Luctor et Emergo

Resurfacing

2011-04-11T16:43:00.000-07:00

Going up or down? Is the title of another beautiful image of my friend Vlad @ Vladstudio. His wallpapers and images are free to use. Amazing artist.

The image seemed fitting for a new blog period. I know I have been absence for half a year, too much sadness and grief was going on in my life and while blogging is a good outlet you can't keep rehashing the same issues day after day, your readers will get fed up with it quickly. So I stuck to journaling for that time being and chose to keep my thoughts and rants quiet.

However lately I had to urge to blog again, couldn't find time. Isn't that an oxymoron? A chronic ill person, at home all day with nothing other to do than staying alive has no time to blog. I know! I was amazed and irritated with myself too. What no time? How is this possible? What on earth do you do on a day that you can't make time to blog, a 'friend' asked me.

So I started thinking about that and well, let me enlighten you, here is an account of my daily day activities.

I have a reversed sleep cycle(thank you adrenals) that I'm trying to correct, so I usually fall asleep at 5 or 6 AM. Now daylight is peeking through the curtains at 6:00 AM it's even more difficult to fall asleep. Trying to correct the sleep cycle mans I do go to bed at a reasonable time at 1:00 AM even though my cortisol is than sky high I try to ignore that and try to sleep in the hope that one day it will stick. I will wake around noon and will try to get out of bed. This means I had only 4 or 5 hours of non-restful sleep. Plagued by numbing pain in my joints I wake up frequently and need trips to the bathroom too because I suddenly seem to have the bladder the size of a peanut.

After I dragged myself out of bed and sit on my chair next to my desk that also serves as my medication station, I start by taking part of my meds(Hydrocortisone, supplements, heart homeopathics) and inject Heparin that I had prepared the night before, after that I inject my Growth Hormone and recover from this activity and shuffle to the bathroom. Sit down to wash face and other necessary parts of body that need cleaning, gurgle with special mouth water to kill bacteria that giving me a sore throat, need to be careful not to choke on mouth water and ingest it. Does not go down well. Brush teeth, pull on yoga pants and shirt and am more than exhausted by all this. Wonder if I should go back to bed, assessing my spoons for the the day, I decide to make the trip to the kitchen and be careful not to trip over the dogs who are excited to be left out of their crates and need to go out. Manage to get them to the yard where they turn around and stand before the door looking at me and why I don't come outside in the rain and play as well. Silly dogs. Now on to my frist aid to get my head cleared a bit, espresso!
In the meanwhile it is 1:30 AM.

I have a hospital bed in our family room so I can lie down there and still be part of the activities or watch tv. My small laptop(MacBookAir) is there and the dogs keep me company.
Check email, let puppy out to pee, go back to email, get up again to let pup out to pee. Good grief her bladder seems even smaller than mine! I get enough exercise today!
Get up to take rest of medication and another espresso. Because I can not stand at the counter to make breakfast I have a protein shake with special supplements for breakfast/lunch.(Thorne Research - MediClear Plus Formula).
Give dogs treat balls filled with their breakfast/lunch so they are busy for a while. Go back to laptop on the bed and do some shopping like new supplements, pet food, medication, food. I have been so lucky to have found a cook that cooks home style meals for the price of take out and I order each week healthy menus so W. only has to put them in the oven when he comes home.
Am exhausted, it's 3:30 by now.

Am irritated that it is 3:30 PM, need to be in bed by 4:00 PM to rest in order to be able to get up around 8:00 PM and have dinner and some conversation with husband. Had planned to do some blogging, work on my photos, take at least one photograph a day, start the design of a new prayerbead for a dear friend, write an email to my daughter and work on pup Miss Molly's blog. Who the hell am I kidding? Only myself.
Decide to go at least to the yard and sit on the bench and throw the chuck-it ball for the pups, no need for them to suffer from this illness as well, I suffer enough for half the world population as it is. Take phone with me to get the daily pic. Dogs are excited and run back and forth with the ball. Good, means they will be ready for afternoon nap. They know the drill though and are totally tuned in with my schedule. The days they do not go to Doggy Day Care to play with friends they will sleep in their crates till noon after W. has let them out before work. I'm truly blessed with 2 such lovely canines. They never ever wake me up or whine to be let out and play in the morning. After 20 minutes of some good exercise(for them) we go back inside and off to take a nap.

Gheez I'm exhausted as I lay my hurting body back down in my bed, grateful for the soft and comfy mattress toppers that relief some of the pain in my hips. As I drift off in my meditation and visualization I remember to say thanks for this being a good day. I was able to be up for 4 hours, partly lying down in the family room but still, awake for 4 hours. There are days that I don't even manage 1 hour.

Awake with a startle, confused, is it day or night? Do I have to get up or get back to sleep? Look at phone, it's 8:00 PM time for dinner and to get up. Pups are already out of their crates because W. is home. I didn't notice because I sleep with earplugs in deep deep silence except for the screaming sirenes in my ears because of the tinnitus.
It's always a struggle to wake up because I sleep so deeply in the afternoon, it's like a regular person would be woken up after 3 or 4 hours during their REM sleep and are forced to stay awake. W. knows he should not speak to me for the first 20 min or so because I and non-communicado and will rip his head off. After same meds cocktail as before only now added to the bunch a lovely B12/Gluthatione injection administered my the even so lovely W. in my butt, I start to come around a bit. Time for dinner, it's around 9:00 PM now, and some socializing and more puppy pee trips to the yard(W. not me)
Together we drink a wonderful espresso after dinner and if I feel ok we watch some tv. Around 11:00 PM W. goes off to his room for a good night sleep and takes the pups with him. I go to my room and either fall into bed or read some email and need to catch up on new research. I can not let a day go by without looking at research and blogs of fellow patient friends.

Use the Chi machine for half an hour, if I'm in much pain I might use the far infra red lamp as well. Do some acupressure, listen to visualizations stuff on my iPod or books on tape. Too exhausted and too much sensory overloaded to be able to blog. Not looking forward to the night. Take cocktail meds that should knock me out but it don't. At least it creates a sense of peace in my mind and body and I'm okay with that. Go over the things I am grateful for today, having medication is always one of them. Happy that I made it through another day.

And that was an account of a good day for me, hope you had a good one too!

# # #

I am the master of my fate

2010-11-02T03:15:00.000-07:00

The words of my favorite poem, Invictus, gives me so much courage, time and time again.

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

XMRV Virus

Well, as you probably have guessed by the lack of postings about my ABX protocol it did not work out. In short, it was a disaster.

First, I should not have started with the InterfasePlus to attack the biofilms but start slowly with the Interfase without the Plus and than add a low abx after the dust had settled I should have started working on the biofilms.

Alas that is not how it went. dr. V. told me to start with the Plus and that is what I did, other patients had wonderful results with it, I nearly ended up in ER. Only my fear and terror of ER's kept me out of it this time. I blatantly refused to go. I have seen too many ME friends ending up in ER and being treated with shocking conventional meds and nearly die. Shocking for the system, we can't take the same treatment as 'normal' people get! We're too damned sensitive!

After I slowly tried to build up the InterfasePlus with 1/4 of a dose I got serious Tachycardia, dizziness and low BP which made me faint again of course, blazing migraines and that heart that wouldn't beat a normal beat. I was sweating like I was in menopause and had hot flashes and I knew it was seriously wrong. A great deal of the viral and bacterial infection is in my heart and so are the biofilms. No wonder I started to feel rotten, they didn't like being messed with. Plus my lack of detox capabilities made it even worse. I drank loads of electrolyte enhanced fluids, took charcoal hoping to bind whatever was causing my heart to behave like a 9.0 earthquake, mud packs, the whole shebang.

It took days before my heart rate was back to normal and I can't tell you how exhausting that is. You can't sleep, don't know how to lie down or sit up, toss and turn, bend over to help that little organ that regulates the heart rhythm get back into it's normal shape. I took medication to get the rhythm back to normal and in the end it worked out but all the while I felt like I was dying.
And that was that. I had a relapse that took me almost all summer to get back to were I was and I'm still not there and probably never will.

It has been a difficult summer. A couple of my dear online ME friends died and I had to come to terms with that. All as ill as I am and you can’t help and wonder if that is going to be next for you as well. You somehow have to make peace with it, if not, life, what is left of it is going to be a struggle. I'm still working on it though.
I hoped to be well enough to travel by September, what was I thinking? Of course I wasn't. My daughter gave birth without me being present to her first one, a beautiful baby boy. I know she needed me there, it was a difficult birth and I felt utterly useless and failing as a mom. Again. A 19 hour travel just wasn't in the cards for me.

This rotten disease knows no boundaries in taking what is mine, the more it takes the more it wants. It's a hungry beast with a bottomless stomach. Melancholy and grief seemed to be the theme of the summer, there was just no end to it. Just when you thought you conquered one problem physical or emotional another one popped up.

After new testing, 21 vials again, yes the big ones, we decided to start with the antivirals this time. Test results were not good, viral load is way up from all kinds of viral infections so it's needed to start doing something. If we do nothing it will be over pretty soon so we might as well give it a shot.

At the moment I'm looking at my container with Valtrex, patiently waiting for me to start taking them. I was ready for it had I not decided that a massage would be a good idea I probably would have started by now. But that trigger point massage, from a wonderful in home massage therapist I might add, threw me in a total relapse, again!
Dr.V. had already warned me to be careful not to move lymph fluids but I gathered him being his usually overprotective self towards me, how much damage could a massage do. Well let me tell you,.... a LOT! Within 2 hours I was reduced to a blubbering shaking, shivering mass that didn't know where to turn to get rid of so much pain that was traveling through my body as a roller coaster in a Disney park.

It's 4 weeks now and it's slowly getting less, except the spinal cord inflammation. Dr. V suggested a DMSO IV, apparently it will help for inflammation. I'm scared for cardiac problems but at this point I'm willing to try anything. A side effect of DMSO is it's smell that generates from the patient, comparable to rotten eggs or garlic. The stories I have read tell of couples that need to sleep apart because of the smell and can't stand to be in one room together.
We already have our own bedrooms so we solved that problem. My need to be alone, in total darkness and quietness and strange sleeping hours was keeping W. awake and he has to work the next day so I got my own room where all my things are surrounding me and me hospital bed that goes up and down at the head and feet. I can lay there all day and bother no-one.

Now we have to find a day that I can be up longer than 2 hours so I can get the IV. I hope I can manage somehow to get to the clinic, and sit in the chair which will be a challenge. Last time we tried an IV I left crying because of the pain it causes me to sit in a recliner for longer than 20 min. Maybe if the had a bed I could lay on my side, that would help. Or maybe I can bring my own bed in the form of an Aero bed ;-) Set it up in the hallway and lie down. i might suggest that and ask them to take pics. Great fun ;-) We are so easily amused ;-)

I had a few requests to post some test results and a medication/supplement list of what I already take, will do so tomorrow.

# # #

ABX protocol

2010-05-31T23:50:00.000-07:00

Cpn, Chlamydia Pneumoniae, is an infectious bacteria and the most active bacterial infection in my body and a dangerous nasty bug.

It has 3 life stages. Cpn is not in your blood but it heads for your cells(brains, organs like l=kidneys, liver, lungs, heart, sinus) right away. Once in a cell it takes on the ID of that cell so your immune system does not recognize it. Clever little buggers! Than it sets up little factories where it can reproduce itself and it seals the cluster it has now made and goes into a resting stage.

Around that cluster a film is forming, a bio film and over time other bacteria and viruses harden the bio film wand on the outside with the Cpn bacteria in it so no antibiotics can get to it.

Now what I first need to do is take a medication that will open up the bio film and once it's open the abx(antibiotics) can get in. However these are though nasty critters and they will put up a fight and because of the different life stages we need different ab's to deal with that. If one isn't working anymore the other one can take over and clean up the mess.

The toxins they release will be horrible and no walk in the park, it will make me ill and cause painful inflammation everywhere. Because I have a BIG problem detoxing it is going to be a closely monitored event. I miss certain gene that takes care of providing glutathione used for detox.
The problems is they(the bacteria) have taken up house in the mitochondria which takes among other things care of the detoxing. I keep suppling it with glutathione injections but not sure if it is enough and maybe I'm just feeding the beasts.

The protocol is been used by a lot of people who have Cpn, it's a common co-infection in MS and ME/CFIDS. it's a controversial protocol because it uses up to 5 different abx at the same time for a long time. A protocol maybe take from 2 - 5 years so it's not just a course of abx of 10 days and you’re done with it. No this is a long term plan, it's _that_ hard to kill off the buggers.

There are different variations of the protocol. It started with dr, Stratton who did a lot of research and work on this but had to close his facility because funds dried up. Now where did I hear that before? dr.Freitas anyone? Luckily a lot of information he wrote and produced has been preserved and it all can be found on the Cpn web site.
The 3 protocols or CAP(Combined Antibiotic Protocol)as they are called are recommended by dr. Stratton and dr. Wheldon from the UK who is a microbiologist. Many regular physicians do not feel comfortable prescribing so many abx for so long because the have no experience with it. I'm so lucky and grateful to have W. as my physician who not only is very knowledgeable but also not afraid to think outside the box and accept my ideas and research.

I ordered the Interfase Plus a medication to remove and open up the biofilm and will start as soon as it arrives which according to my peeps at Amazon will be tomorrow.
That will take about 3 weeks according to W. and he said my body will let me know when it's ready to move on to the next stage. How exactly I don't know but I'm sure I'm in for a ride ;-) That next stage will be a abx called Biaxin or Clarithromycin.

This time I truly intend to document it all, because I know so many of you still have to go through this and so little info is to be found. I hope it will help someone.

I'm so grateful for my friends online who support and cheer me on no matter what I do and who are all so understanding of what I feel and let me whine and be silly when I need to. Thanks you guys, where would I be without you? Honestly, without the Internet I would go insane, it's my window to the world.

# # #

The long and winding road

2010-05-31T23:09:00.000-07:00

It has been a while.

Not because I had nothing to say, I left promising a extensive blog about my Chinese Herbal medicine. No I had plenty to say, but as we know the mind can be willing but our bodies do not always comply. I had a set back, not one but a few. Every time I crawled back to the place I was before there was something else that came out of nowhere and hit me on the head and told me where my place was. In my bed, crying in pain, the bathroom puking my guts out, lying on the floor wondering how to get back to the bed.

No, it has not been a great time and it should have been a joyous time. Our daughter and husband have let us know they are expecting their first wee one. Of course we are over the moon for them, at the same time I'm grieving, grieving the fact that I can't be there for her in this so important time of her life. When every girl wants and need her mom to share this intimate moment with. The uncertainties, the troubles, the questions. Not being able to get on a plane and be with her causes me so much mental pain I can hardly explain it. I can handle physical pain but this feeling of failing as a mother is more than I can handle and I curse my body and this horrible illness. I want to be there when the first happy sound comes out of the baby's mouth, I want to smell it's wonderful baby smell, hold it's tiny body in my arms. I want to see my daughter becoming a mom. This is the second time I had to disappoint her, last year I was not able to make it to her wedding either. The flight to Europe takes at least 11 hours plus check-in and security it will easily add up to 18 hours, more than I can handle. A 15 minute drive to the clinic and I need to recover for a week let alone a flight with jetlag to Europe.

This kind of stress caused me to crash and I needed to find a way to deal with it and still be able to be there in some way for her even though it's just virtual with video chat.
It's not the same but it's what we got.

On the health front I am starting the abx(antibiotics protocol)tomorrow. My dr. W. and I had a chat and decided I am unhappy with the way things are going now, I have no life at all. We were waiting and working on getting my immune system on track and restore my body's strength before we could start a viral or abx protocol to kill of the infections either viral or bacterial. But it's not happening. No matter what we do I stay at the same level I was 2 years ago. So we finally decided to go ahead anyway because this is not how I want to live my life. Bedridden, home bound, not seeing or talking to anyone for days or weeks. The loneliness and isolation is overwhelming sometimes and I feel like a freak living like a hermit. No friends who come to visit, not family to support or help out. I needed to do something.

I have so many bacterial infections and the results of blood work stays high. No sign of any virus backing down and leaving me or going dormant. They are all very active.
The bacteria I tested positive for are Cpn(Chlamydia Pneumoniae), Lyme, MAC(Mycobacterium Avium Complex), Giardia and H.Pylori, Mycoplasma.
It's a long list and than there are the viral infections that we will have to deal with sometime.

The abx protocol is not going to be a walk in the park. And I'm scared. But I need to be pro-active and do something otherwise I can just as easily just quit living.
But stil ... I'm scared.

# # #

Wordless Wednesday ;-)

2010-02-02T22:09:00.000-08:00

Prince's Ginseng that isn't a Ginseng

2010-01-23T01:48:00.000-08:00

I started adding Chinese herbal medicine to my treatment protocol this week and thought it might be a good idea to write a bit more about my experience so far. Maybe it will help someone else who's thinking of starting it also.

A couple of weeks ago a research abstract was posted on the CFSresearch list about a herbal treatment with Radix Pseudostellariae aka PRP aka Tai Zi Shen aka Prince's Ginseng.

Below the abstract that was posted.
-----------------------------
[start abstract]
Evid Based Complement Alternat Med.. [Epub ahead of print]
Polysaccharide of Radix Pseudostellariae Improves Chronic Fatigue Syndrome Induced by Poly I:C in Mice.

Sheng R, Xu X, Tang Q, Bian D, Li Y, Qian C, He X, Gao X, Pan R, Wang C, Luo Y, Xia Y, Dai Y.

Department of Pharmacology of Chinese Materia Medica, China
Pharmaceutical University, 24 Tong Jia Xiang Road, Nanjing 210009,
China, yuedaicpu@hotmail.com.

Radix Pseudostellariae is used as a tonic drug in traditional Chinese medicine with immunomodulating and anti-fatigue activities, and the polysaccharide is considered as the main active component.

The purpose of this study is to examine the effect of the polysaccharide isolated from Radix Pseudostellariae (PRP) on mouse chronic fatigue syndrome (CFS) induced by intraperitoneal injection of polyriboinosinic:polyribocytidylic acid (poly I:C), a double-stranded synthetic RNA.

It has shown that the fatigue symptom of mice lasted at least 1 week as evaluated by forced swimming time. PRP (100, 200, 400 mg kg(-1)), orally administered 3 days before poly I:C injection, showed dose-dependent anti-fatigue effects.

In addition, poly I:C led to evident alternations in neuroendocrine and immune systems of mice, such as reduced spontaneous activity and learning ability, declined serum level of corticosterone, increased weight indexes and T lymphocyte numbers in thymuses and spleens, and increased CD4(+)/CD8(+) ratio but decreased proliferation ability of T lymphocytes in spleens.

PRP alleviated the abnormalities caused by poly I:C, and restored the function of hosts to normal conditions. The findings suggest that PRP is beneficial to CFS, and the underlying
[end abstract]
----------------------------

These are the properties of Tai Zi Shen:
Chinese Name: Tai Zi Shen
English Name: Pseudostellaria
Taste Properties: Bitter (Ku), Neutral (Ping), Sweet (Gan)

According to the info from Plum Flower brand of Tai Zi Shen:
[quote]Pseudostellaria is an important herb that helps people recover from chronic illness, especially illness that damages the body fluids.

Scientific research shows that Pseudostellaria to aid in protecting the mucin layer that lines the respiratory tract and functions as an immune defense system.

Additionally, Pseudostellaria is very effective in combating neurasthenia – fatigue, lack of appetite and inability to concentrate. Because of its ability to strengthen the immune system and nourish body fluids, it is a helpful herb for the debilitating aspects of allergies.

Strengthens Spleen and benefits the Qi – fatigue and lack of appetite. Generates fluids – thirst and injury to fluids after a Heat disease [unremitting fevers]. Increases generation of saliva. Tonifies Lung deficiency - cough.[end quote]
-----------------------------

All sounded very interesting and I thought it was worth a try. I never came across a Chinese herb that sounded more fitted for ME/CFIDS than this one. At least for _my_ ME. I consulted my friend, excellent acupuncturist and herbalist C. to ask his opinion and to see if he could locate the Tai Zi Shen for me if he thought it would fit my constitution. The Tai Zi Shen was quickly found and ordered, which was interesting to me as so many other people on the CFSresearch list had trouble locating the herb. I guess if you go to the right source it _is_ available. ;-)

Funny thing about the Tai Zi Shen or Prince's Ginseng is that it is called that way but is in fact not a Ginseng at all according to Naturopathydigest.com.
And I again quote:
[quote] What is pseudostellaria?
Pseudostellaria is the name given to a type of plant that is often mistaken for ginseng, and is sometimes called "prince's ginseng." It grows throughout most of central China, including the Hebei, Liaoning, Jiangsu, Jiangxi and Hubei provinces.

Pseudostellaria roots are between two and four inches long, yellowish-white in appearance, and somewhat horn-shaped. The roots are used in herbal remedies, and contain a wealth of chemicals and essential elements, including copper, zinc, selenium, and more than a dozen amino acids.[end quote]

Pseudostellaria

Pseudostellaria dried

Here is the way I use it:
Put about 30 grams in a stainless steel or glass cooking device with 1 liter water.
Let it soak for 1 hour.
Than simmer for 1 hour.
Pour through strainer in a mason jar or other jar and when cooled keep in fridge.

This is what it looks like:

And a close up.... notice they look like maggots ;-)

C. said it would taste like mint tea. Yeah right ;-) Maybe when you have a vivid imagination it does ;-) To be honest I had to get used to the taste, it has a slight bitter after taste that gave me goose bumps ;-) But I noticed that if you warm it up a little bit it is way less and I actually enjoy it now. When I drink a cup I try to imagine how healing and helpful this herbal liquid is and how it will improve my well being.

I have noticed a slight improvement in mental clarity, I'm still very fatigued and exhausted but can now actually rest and sleep longer. That's a major issue for me. Edema in my legs is less and I have to pee more. ;-)
It's still too early to see real benefits, it's only 4 days since I started the herbs so we need some more time to see real changes. Again the most important thing is that I have no negative effects and that was always the case with any other thing I tried.

Will keep posting on how I'm doing with the Prince's Ginseng that isn’t a Ginseng. ;-)

Tomorrow a bit more about the topicals and my second round of injections!

# # #

Change is coming

2010-01-20T22:58:00.000-08:00

Artwork is from the lovely, funny, multi talented and always an inspiration, Andy Dooley

Change is coming! It's my theme, my mantra for this year, this decade. I can feel there is a change in the air, whether it's good or bad I don't know, but it will be a change for sure. It's about time!

I have not been able to write much the last months. Too ill, too much stress, too much sadness. Too many treatments that started and did not work, too many herx episodes and too little detox.

This year started on a right note, we finally started the treatment we have been discussing since last year July. It looks like a modified Neural Therapy, except we're injecting homeopathic solutions in corresponding acupuncture points. Other ME patients I know that used this (experimental)treatment had very good results with it.

We started with 5 acupuncture points located on my legs and 1 in my elbow, the first session was last Friday. The good news is that I had no negative reaction whatsoever. Besides being sore from being poked at. ;-) I was extremely exhausted and slept for the first time in a long time for 6 hours straight. Woke up at 5:00 AM with swollen hands and a wedding band cutting off blood supply in my finger. It took a lot of oil and soap to get that off. ;-) I had a nasty headache as well which was because toxins were trying to leave my body I think so I drank a lot of water, had a horrible spinal pain, took a Morphine tablet and went back to sleep till 10:00 AM! It's amazing to be awake at 10:00 AM and feel like eating breakfast! Swollen hands were gone.

Normally with my delayed sleep cycle I do not get to sleep until 4:00 or 5:00 AM, wake up at 10:00 AM also but exhausted and sad because I did not manage to get a good night sleep again. I still get up or try to get up at 10:00 AM to keep a 'normal social acceptable' schedule, but the result is not in the best interest of my healing. I should sleep at least till noon. Why I don't? It's because I'm afraid to totally switch night and day and the nagging voice of my mother in my head that only scum lay in bed all day. Funny how that still works.

My cortisol is out of wack. I have 2 peaks during a day. One peaks at 11:00 AM and the other at 11:00 PM. No wonder I can not sleep because my body feels awake because of the cortisol. Normal people have a curving cortisol graph, not me. I go from nothing to a peak like Mt.Hood and than drop pretty quick again.

The next day after treatment I felt pretty well, mental clarity and my mood improved. Physical I did not notice any changes yet but I hope that will soon change after we start injections 3 times a week. It's hopeful that I didn’t have a negative reaction after so many treatments made me decline even more.

I also started TCM, and started with the herb Prince's Ginseng or also known as Tai Zi Shen see also this web site

My friend, the acupuncturist loaned me very generous his TDP lamp if you're not familiar with the TDP lamp Wikipedia has a nice entry to it.

I use a wonderful Chinese oil with the lamp called Trauma Oil, which helps with the pain in my muscles and a liquid Zheng Gu Shui(not with the lamp). The last one is magic to my weary bones that hurt so much. Right after applying it I feel the pain becoming less. Something that no lidocaine patch or pain medication has been able to do.

I'm herxing a little but that is good, my body lets me know is has received the message loud and clear, change is on it's way!

Stay tuned for the next update!

# # #

Creative With Criteria.

2010-01-15T02:19:00.000-08:00

This is a re-blog something like a retweet if you are familiar with the Twitter language. If not, it's just something that has been posted somewhere else and is been used again to either get attention to the worthy cause or because it was something hilarious. In this case it's both!

I recently stumbled across a blog I wish I had known before.
Posted on this blog was the perfect example on how to be creative with criteria. dr.Speedy who is the owner of this blog states that all materials posted on his blog are free to use so I took him up on his offer and re-blog that exact posting. Hope you enjoy it as much as I did!

All materials provide dr.Speedy's blog; The NICE-Guidelines Blog

'The Truth About Penguins'

by Peter Kemp

I wanted to study the nature of penguins

The Canadian definition of penguins is that they are

flightless
they can swim
largest species up to 1.2m tall
they eat mostly fish
they lay 1 or 2 eggs
they generally live in colonies

the 'CDC' definition of these birds is that they are

flightless
they sometimes eat fish
they lay eggs
they can swim

the 'Oxford' definition is that these birds are:

flightless
they lay eggs

The 'Oxford' definition was chosen for the research as the others were too difficult to apply. 100 subjects who met the research criteria were studies in Sub-Saharan Africa.

The research found that penguins:

live in deserts
cannot swim
are up to 2.4m tall
weigh 200 pounds
capable of speeds up to 40mph on land
are mostly vegetarian

Conclusion

The research has discovered the truth about penguins. Those funny black and white birds waddling about the ice and swimming in the sea are making fools of everyone. They are not real penguins and should be excluded from further research into penguins

Correction **

2010-01-09T14:09:00.000-08:00

If you who have read my previous entry you might wonder why the content of that entry changed. I changed the wording. Reason I changed the wording is because I received an email from the President, National CFIDS Foundation, Inc., Gail Kansky in which she explained to me that I posted 'erroneous information' in my blog entry and that my statements contained libel which was unlawful.

The information that allegedly was erroneous was that I stated that because the article that mr. Huntington wrote and was printed in the National Forum, the NCF's newsletter, it represented the opinion of the National CFIDS Foundation.
According to the NCF, this is not true.

mr. Huntington is not a member of the board but a member of the Forum Staff and submits articles to the newsletter.

As mrs. Kansky pointed out to me the disclaimer in the newsletter states: 'Each columnist has expressed his/her own ideas and/or opinions.'.

Her message went on with the request to remove the erroneous information. To prevent further legal action I have removed the statement that mr. Huntington represented the opinion of the NCF.Inc.

# # #

If this was not a blog about ME/CFIDS I now could start the interesting discussion about the legal liability issues you have, being a blogger. But all this would take too much of the little energy I have to spare.

As an Software Architect and Open Source advocate my fabulous husband has been a member of the Electronic Frontier Foundation for years and we as a couple support the EFF organization financially. He provided me with a link to an excellent guide that I will post here. If you blog, please read it, know your legal rights and know where to go to get help.

The Electronic Frontier Foundation's Blogger's Legal Guide

# # #

** - Corrections are marks or comments made on a piece of work -

GIGO (garbage in-garbage out)

2010-01-07T00:45:00.000-08:00

Against my normal policy of blog writing I start this year of with an excellent piece written by Mary Schweitzer. Mary wrote this in response to the article that was published Jan 6th regarding a study done by the Wessely school in the UK about XMRV in British Chronic Fatigue patients.

All over the world 'scientist' are trying/working on to discredit the work the WPI team did and published when they discovered the retrovirus XMRV being prevalent in CFIDS/ME patients.

An IMO disrespectful article called 'Why The XMRV Hype' written by Robert Huntington printed in The National Forum newsletter, gave me goosebumps and made me feel nauseated. The tone of this article was very denigrating and questioning the integrity of the investigators and out to humiliate them instead of being good investigate information and questions. I would have objected to this tone in an article no matter what the subject, it shows very bad taste and lack of ammunition if you have to result to these kind of tactics.

I wanted to write my opinion about the work that is been done in the UK, but Mary does it so much better than I ever can so hence my decision to place her article here.

It's a sad day when the few CFIDS/ME patients organizations are trying to discredit each other and the research work that has been done.

May Be Reposted:

I have posted a response under the title, "Pay Attention to the Data Set," to the article, "CFS patients in UK show no signs of suspect virus," in New Scientist online:
http://www.newscientist.com/article/dn18341-cfs-patients-in-uk-show-no-signs-of-suspect-virus.html

Pay Attention To The Data Set

Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.

There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").

Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.

Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.

These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."

The Kings College picture of CFS can be viewed on their website, at http://www.kcl.ac.uk/projects/cfs/health/

If you are pressed for time, read the section called "Letting go of support," at
http://www.kcl.ac.uk/projects/cfs/health/#Support

The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.

A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, origionally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)

In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.

Note what happens if you use the following:

- Six months of fatigue

- Headaches

- Sleep abnormalities

- General aches and pains

- Distraction or confusion

Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."

The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.

What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.

For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.

And that is what is meant by the old saying, GIGO.

Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.

It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.

Without consistency, there is no science. Only opinions.

Mary M. Schweitzer, Ph.D.

The 'Eureka' moment.

2009-11-04T00:06:00.000-08:00

There has been a lot of publicity about the recent discovery of the new retrovirus XMRV by Judy Mikovits and Vincent Lombardi in cooperation with the Whittemore-Peterson Institue and the National Cancer Institute.

I have been waiting to blog about, so many people have already wrote so many useful and excellent stuff that whatever I will write is not going to make much of a difference. I will limit myself to providing links back to what I think are excellent blogs about it and I will share with you what this all means for me personally because that is why I write this blog, not just to educate the public, there are so many people who can do that much better that I can, but to share with you an important part of my journey. Because we chronics are so isolated this is my only possibility to let my voice be heard. A treatment for this illness will probably come too late for me, I'm holding on by a thread and time is running out fast, but it is my hope that somehow somewhere people find inspiration when reading this to go on and to never give up!

I would like to share with you a wonderful article that was written by Lenita Powers for the Reno Gazette Journal. Please send Lenita a thank you note for writing so eloquent about this.

[quote]
Judy Mikovits remembers that "eureka" moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

"It was January 22, and we were in a San Diego restaurant called the Yard House," said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world's leading virologists.

"We kept waiting for them to say something," Mikovits said. "I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, 'Well, this is going to change their world.'"

And it has.
[/end quote] click here for the full article at RGJ

That last sentence did me in and it kept going through my head IT HAS, IT HAS, IT HAS!!!!

It has freakin rocked my world and that of millions of others!
Not only did it rocked our world but it has given us HOPE and RECOGNITION.
Suddenly the government listened, the CDC listened(although with a half ear, still) and the media found us! Not only are we not crazy and need to be locked up for imagining a disease, it's actually what most of us have known for ages an infectious viral disease.
Granted a lot of research and comparable test needs to be done but the percentages found can't be that much wrong.

Now what exactly did they find? They found a new infectious human retrovirus, XMRV (a xenotropic murine leukemia virus-related virus), in the blood of 67 percent of the Chronic Fatigue Syndrome patients they tested. There are only two other known human infectious retroviruses HIV is one of them. The discovery means it is possible that XMRV is the underlying cause of ME/CFIDS

Of course a lot of fellow ME/CFIDS'ers were shocked, they are from the group that still hoped there was a cure for what they had and it probably never crossed their minds that at the base of all this could be a virus. I belong to the other group who always knew deep in their hearts that it couldn't be anything else than a nasty virus causing all systems to go haywire.

Than there was the note that said 'infectious' this send a wave of fear through the groups of people. What exactly did that mean? Could you give it to others around you?
Well yes and no. Dr. Mikovits has said she has found XMRV in saliva ("cheek swabs"), besides plasma and semen, and that indicates higher transmissability than was mentioned in the official release. It's possible it will be transmitted through the birth canal. More research is on it's way about this important part.

Having the retrovirus present in your blood does not mean you will get ill, in a lot of people it can lie dormant forever. It stays with you for the rest of your life because it inserted itself in your DNA. Having an active XMRV means it can be turned on and off like a light switch by factors, such as stress hormones like cortisol, or in response to the presence of inflammatory 'cytokines', protein molecules secreted by immune cells to help regulate the immune system."

This for me explains why my body is constantly trying to lower my cortisol and why I don't tolerate hormone medications where I'm low in according to test. The body had located the XRMV virus and knows that by producing more cortisol in reaction to stress the XMRV will be turned on and cause havoc. Same for the hormones I tried to take and that made me so ill. Doctors never believed me when I told them I could not tolerate hormones. Now I know why, the body lowers the hormones on purpose so the XRMV will stay in it's dormant state.

Many physicians are hesitant to celebrate with you the discovery of this virus. Most of them 'take a step back' approach and tell you nothing changed and nothing will change with this discovery. They think it's just another virus added to your already high viral load, just like your EBV or CMV. It's a bit disappointing but I can understand why they are being careful.

Saw dr. V. today we discussed the results of my extensive 24 vials blood test. He had the same opinion, I already knew because I saw dr. T's opinion on his web site and didn't think his corporate dr's were going to have a different opinion.
He is fully supportive of testing me for the XMRV and agrees I'm a likely candidate.
The wait is for the WPI(Whittemore-Peterson Institute) negotiations with the large labs to offer the same test the private VIP labs is offering but cost 650 USD. Which is a bit steep especially for those on disability.

If have very mixed feelings about the test, it's great to get the acknowledgment that you have a legit illness at the same time it means a life sentence with a heavy load of medications to keep the virus in check. On the other hand and this is my biggest fear, if you test negative, than what? Suddenly you don't belong in the ME/CFIDS group anymore but still have this unknown illness with a high viral and bacterial infections, you will not have the right to testing and medications others who tested positive will have. You'll be another outcast that will need to struggle and fight on by herself as you have done for the last 30 years. Can I cope with that or will the disappointment be too big to handle? I don't know. I just don't know and it's giving me sleepless nights.

Think of it this way dr.V says, nothing has really changed you're still the same with the same symptoms. So you can go on on the path we have set out. But that is just it. We want more, we want treatment not just guessing if this will work or not.
My tests results were a mix bag My EBV load was less but others were up, my Natural Killer cells were down to below 10. My cardio was up and I acquired a couple of new Herpes viruses so I have now the whole series. Anyone wants to trade let me know, I have doubles!

Heavy metals also showed up in my tests this time. Not good. Now I have to work on removing those and they will not go away without a fight I'm afraid *sigh* I can't get any sicker than I already am. I timed my standing up time, it was below the 2 minutes before I collapse in pain and exhaustion. How much more can I take?
We're about to find out I'm afraid.

For more info on XMRV go to the WPI website and check their Q & A.
Below are a few links to interesting articles and blogs about the subject.

Hillary Johnson's: Our Vietnam War Ended Today

Peggy Munson's blog: Fly Away to XAND-ado, or Where Is Elaine DeFreitas?

CFIDS Watch: Horror Statistics From US Government

RGJ Editorial: Researcher's discovery gives new hope to Chronic Fatigue sufferers

RGJ: Daughter's illness led family to seek help, start institute

RGJ: 'I don't ever want to seem like I'm suffering from this disease'

Dr. Donica Moore on XMRV: ABCnews "Does a Virus Cause Chronic Fatigue?" [Oct.19,2009]; Good Morning America Health

Sleepless in Portland

2009-10-03T03:41:00.000-07:00

What do I think about every day?
Improving my quality of life! Being able to walk down my street with my dog to the park. I loved walking, especially in my neighborhood, meeting neighbors, making smalltalk. So never give up? I don't know. Right now I'm not feeling it.

Day 5 and no sleep whatsoever. How long can a human being go without sleep before collapsing all together? I tried to nap in the afternoon, my usual schedule from 2 - 6. Normally I have trouble waking up and would rather stay in bed than get up and have dinner. Not so now.
I take my medication, my body is exhausted but my brain is wired like a college girl on spring break. Before this nasty episode I would grab a book and read, now my eyes are too tired, are burning and have blurred vision. Annoying as hell! I want to sleep, my body wants to sleep my brain is on a merry-go-round.

On top of that the government in all it's wisdom has given the State of Oregon money to improve infrastructure and repair roads and highways. Great! Why they have to repair those roads with the most heavy material they could find always at night is beyond me, it's like having a car full of teenagers with a bass loudspeaker on full blast next to your window. Or so it seems. I have put in the most powerful earplugs I could find but still the whole house is vibrating on doing doing doing.....
Of course I know what they do the work at night but still is it unreasonable to ask for a couple of days of rest? People who are noise sensitive like me, who go insane when they hear the fridge go on and off all night, who can hear a clock ticking from the other side of the house, light bulbs buzzzzzing need some relief! It's enough stress and pressure to start thinking of everlasting silence. Really, it can drive you over the edge. So besides me not sleeping because my brain is reacting to some sort of chemical, there is also the road workers who making my nights a living hell!

I have now put in my noise cancellation headphones, real expensive ones that take the form of your ear and have put on my 'sleep' application on my iPhone. Thunderstorms and rain and will let it run all night if I need to. Hope it will help a bit.

Why can't I sleep? What is causing my brain to go haywire? What has changed? i can only lead it back to the start of some new medication called Isoprinosine, it's an immune stimulator. Isoprinosine has both immunomodulation and antiviral properties, it increases the Natural Killer Cells and is especially helpful in the treatment of the Herpes family. HHV4/5/6 etc.

How it functions is written very clearly here, much better than I ever can, so hop over there and read up. What concerns me, besides the side effects is this phrase: "This immune modulator inhibits human herpes viruses and other infections by mimicking the effect of hormones produced by the thymus gland."
Right.... and everything that tries to activate, alter or even point at my non existing hormones always has driven me into depression and often made me even suicidal. Why I'm not exactly sure, I do know I did a gene test that proofed that yes I was indeed very sensitive to these kinds of medication.

Also it says and I quote; "Side effects: Unknown, although any type of hormone or hormone analog supplementation can be hazardous."

So it's a fine line I have to walk, is the insomina, the wired brain and slight depression acceptable for using Isoprinosine? Do the negatives outweigh the benefits? And what benefits can I expect anyhow? Up till now I have only felt worse than the weeks before. I didn't know that that was possible but apparently yes, it is.

I'm so sick and tired of trying out medication and only feeling worse. I all these years I have never come across a medication that helped me feel better or lessened my pain or even my mood. I'm really really bone tired and am getting discouraged by the lack of progress.

I'm off to be now and hope I can get a few hours of sleep. Just a few that's all I ask. 5 days without sleep is just too much. Maybe should start thinking of using either marijuana or Xyrem. At least with MJ I would have some fun along the way ;-)

Wish me luck. ;-)

# # #

Laurel's CFS/CFSAC Testimony

2009-09-30T14:54:00.001-07:00

My fellow blogger Laurel who is also diagnosed with severe ME was so brave to make this video testimony for the CFS advisory committee.
Please read Laurel's blog entry on more about the committee and her reason for making this video.

Thank you Laurel for giving us a voice!

30 Things About My Invisible Illness You May Not Know

2009-09-22T19:52:00.000-07:00

It was invisible chronic illness awareness week! I didn't even knew we had one but I landed on an excellent blog and stole this idea from her to contribute to the 'awareness' of invisible chronic illness. ;-)

The week is already over but I thought it still would be fun to post the questions so you all get to know me better. ;-)

Please send me you link if you decide to do your own. The list can be downloaded/copied here.

If it's not readable the cute image below says 'It's All In Your Head' . ;-)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myalgic_Encephalomyelitis: MYALGIC(muscle pain) + ENCEPHALO(relating to the brain) + MYEL(relating to the spinal cord) + ITIS(inflammation) = MYALGIC ENCEPHALOMYELITIS (brain and spinal cord inflammation with muscle pain)

2. I was diagnosed with it in the year:
1985

3. But I had symptoms since:
1971

4. The biggest adjustment I’ve had to make is:
Giving up my independence, no more driving, shopping, showering, getting dressed, putting on my shoes by myself.

5. Most people assume:
That I'm just a fat person who needs a wheelchair, if only she lost the weight she could walk if she wanted to.

6. The hardest part about mornings are:
Waking up and realizing it's another day in solitude ahead of me.

7. My favorite medical TV show is:
huh?

8. A gadget I couldn’t live without is:
My iPhone

9. The hardest part about nights are:
The pain and loneliness

10. Each day I take _ pills/vitamins. (No comments, please)
54

11. Regarding alternative treatments I:
Use a combination of Western and alternative, whatever works I will use/try it

12. If I had to choose between an invisible illness or visible I would choose:
Visible

13. Regarding working and career:
There are more important things in life that working and a career, like health, friends and enjoying life.

14. People would be surprised to know:
I'm an introvert.

15. The hardest thing to accept about my new reality has been:
The isolation and giving up my independence.

16. Something I never thought I could do with my illness that I did was:
Be assertive and become a bitch if the need arises.

17. The commercials about my illness:
None existent.

18. Something I really miss doing since I was diagnosed is:
Traveling.

19. It was really hard to have to give up:
Walking/hiking, dancing, nights out.

20. A new hobby I have taken up since my diagnosis is:
Designing prayer/meditation beads. Necklaces and bracelets

21. If I could have one day of feeling normal again I would:
Travel to the Netherlands and visit my daughter.

22. My illness has taught me:
How many friends and family I have and that in the end and when push comes to shove, you're alone.

23. Want to know a secret? One thing people say that gets under my skin is:
I am also tired sometimes, have you tried ______ treatment/supplement/pill/book/diet? It helped me a lot.

24. But I love it when people:
Do things for me without asking.

25. My favorite motto, scripture, quote that gets me through tough times is:
Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is possible

26. When someone is diagnosed I’d like to tell them:
Read, research and read, read, read as much as possible about your illness and don't gather a lot of physicians around you who do not communicate with each other. If possible stick to just 1.

27. Something that has surprised me about living with an illness is:
The stigma it has.

28. The nicest thing someone did for me when I wasn’t feeling well was:
A friend took care of the pups I had in rescue at that time when I crashed.

29. I’m involved with Invisible Illness Week because:
The stigma about invisible and chronic illness need to be removed and become visible!

30. The fact that you read this list makes me feel:
Not so alone and I you have an invisible illness I hope you also fill out and post the questionnaire!

Find out more about National Invisible Chronic Illness Awareness Week http://www.invisibleillness.com

The road is long...

2009-09-15T00:57:00.000-07:00

That song keeps playing in my head, some neurological circuit clash.

It's from, He Ain't Heavy, He's My Brother... song from the Hollies.
The road is long
With many a winding turn
That leads us to who knows where

The song is about a man caring for his brother who has cancer, 'No burden is he to bear We'll get there' 'He ain't heavy, he's my brother.'

Always touches me, these lyrics. Lately more than I used to, being a burden creeps up into my thinking. It's difficult when you're a chronic to keep a sense of 'usefulness', to somehow find a way to give your life and suffering a meaning. According to my Buddhist way of thinking, suffering is part of life, but isn't too much suffering not overdoing it? Am I going to reach enlightenment sooner if I suffer constantly? ;-) No of course not, all should be balanced. And there lies my problem.

How can I reach a balanced way of life when I have too much suffering and too little usefulness? I struggle every day with the fact that I have to depend on others to care for me. Just to get my basic needs met like washing my hair, tying my laces, putting on my shoes, shopping etc. Do I give enough in return to balance it all out? What can I give in return other than my love and support? These are the questions that I'm pondering while I'm laying on my bed pacing myself, and while I'm pacing myself I am stressing myself out by thinking these thoughts. This is not working and is counter productive.

I used to put a lot of energy into dog rescue, it brought me joy and a sense of accomplishment. If I rescued a dog from a horrible death or worse a life as a lab animal, nourished him, trained and vetted him and saw him off to a wonderful happy forever home, It made me happy. The last rescues we had was the litter of 4 pups last winter, from which we kept one, our Fynn. So seeing my friend in rescue busy with a lot of dogs I felt it was my time to rescue one as well. Unfortunately W. put a hold on that. He pointed out I wasn't able to care for all 4 last time and 2 ended up going to my friend Vicky who helped me when I had a crash. W. said it would happen again and there would be no one to help me.

Maybe he was right, without his support I can't do much. I need to rely on him to drive me places, if he feels that is too much of a burden and he can’t support that I have no other choice than to accept that. It was a major blow though, it was _the_ one thing that brought me joy and gave meaning to my life. That I somehow still was able to contribute to society. And whether I like it or not the thought that a dog will die because I couldn't rescue him is upsetting and I try not to go there.

W. and also my dr. tell me over and over again I need to become more selfish, put myself first in order to get well, to hell with others and their needs. Maybe they're right. Maybe not. How much will they like me if I'm not supportive anymore, not so social, helpful etc. Will I loose the last friends I have left? Will they contact me less and less? Will W. start working more and more? Will I become even more lonelier and a hermit than I am now?

We'll see, I will take them up on their suggestions and become a selfish chronic. Starting today. I will sleep as long as I feel like and won't feel guilty about it. ;-) That is if I can sleep of course. See, I'm already running into problems ;-)

The road is long
With many a winding turn
It will leads us to who knows where.....

Stay tuned, updates will follow. ;-)

# # #

Prisoners of Pain

2009-09-11T16:13:00.000-07:00

Prisoners of Pain

We're trapped inside these bodies
alone, frightened, pained.
No escape, no release,
everyday's the same.
How we long to unzip this flesh
which traps, denies and drains,
and step into a better world
from the one in which we came.
We see through different eyes now,
unsure of what we're seeing.
The feelings we had so long ago
are gone, forever fleeing.
Who's to take us seriously
when we try so to explain?
Who's to hear our screams at night?
Who's to feel our pain?
When will the spirit leave?
When does the soul depart?
Is our mission now in life
hiding safely in our hearts?
Lord, give us the strength we need
to awaken each new day.
Let others find the cause, the cure,
please help them find a way.

Frequency Specific Microcurrent

2009-09-11T03:20:00.000-07:00

What is it, what does it and how is it used? First a bit of history and information.

[quote wikipedia]

Frequency Specific Microcurrent or Frequency Specific Microcurrent Therapy (FSMT) is a therapy based on neutralizing and eliminating disease radiations through the use of electronic equipment. The effect is to be achieved through neutralizing those frequencies that are alleged to be incorrect for the damaged or affected tissues.

A mild electrical current is introduced into an area of damaged soft tissue. The introduced current is believed to enhance the healing process underway in that same tissue. The current is applied using electrodes that have been either moistened or coated with a gel.

[end quote]

It all started magnets in the late 1700s. The development of electric current in various forms in the 1700s brought about all kinds of experiments in clinical electromagnetism. In the USA, over 10,000 doctors were using electromagnetism on a daily basis by the 1880s. The rise of the pharmaceutical companies brought with them the fact that they needed dr's to conduct field trials of their newly discovered drugs.

Despite the fact many people were benefited from this kind of treatment it was banned by the AMA before WWII.

Dr. Albert Abrams in the early 1900s found very specific frequencies that had predictable therapeutic effects, today the Abrams frequencies are still being used.

About 15 years ago Dr. Carolyn McMakin, a chiropractor from Portland, Oregon, brought microcurrent technology up to modern day standards and began teaching doctors and other licensed health care providers how to use frequency specific microcurrent (FSM) for the treatment of many different conditions. Her machine, made by Precision Micro, has FDA approval.

What happens to the cells during a FSM treatment?
Microcurrent frequency is thought to affect cells in such a way that a dysfunctional frequency stuck within a cell will be neutralized. The cell can then resume its normal functions, one of which is making a most vital energy molecule – ATP. Studies have shown that microcurrent can cause an increase in cellular ATP production up to 500%.
FSM basically decreases pain and reduces inflammation in the tissues of the body.

A treatment usually takes from 15 minutes to 45 - 60 minutes. The results can last from a few hours to days. With repeated treatments the cells are every time much less likely to return to their old and wrong or disturbed functions.

It's painless, it's applied by putting 2 electrodes in a wet towel around my neck and one around my feet of ankles. The positive and negative pole.

It works wonders on Myofascial Pain, Neuropathic pain, all kinds of Cord Mediated Pain among them also infections to the cord, immune and glandular support and a whole long list of other conditions.
See this web site for a list of conditions and the use of FSM and the FSM theory. And another one very clear explanation.

Nice tidbit of information, very few people know that when Lance Armstrong was performing in the Tour de France he was treated every night with FSM!

I have had 3 FSM treatments, unfortunately I am one of those people who do not react spontaneously to FSM by noticing a lot of improvement. The first treatment I was extremely tired afterwards, had many cognitive malfunctions, my English was horrible, I mixed up Dutch and English words, couldn't remember the meaning of a word or object, I couldn't remember how to drink, I could put the water in my mouth but could not swallow it. That lasted only a few minutes but it was scary.

I slept well that night, my mood improved the next day I finally felt a tiny glimmer of hope. But it didn't last long after a day I was back to my old self but this time with a small detox. I drank a lot, am still addicted to coconut water which gives me lost of electrolytes and that's good!

Second treatment still no reaction right after treatment but slept well for 2 nights. Mood again improved a bit for 2 days and than it was over, this time I had a full herx also because we added homeopathic solutions to the protocol. I felt horrible, vertigo, I walked like a drunken sailor and my back hurt like never before. The pain is excruciating, the virus has inflamed my spinal cord and I'm paying dearly for that. I got lidocaine patches to help with the pain but they could be regular bandages because I don't notice the difference.

Third treatment I went into detox right away, sore throat, swollen glands, edema, kidney pain, headaches, vomiting, vertigo, tinnitus, nasty allergies, water just keeps dripping from my nose. I did sleep for 3 nights now so we are making progress. Mood did not improve this time. I'm pessimistic about the outcome, I realize I do not have much time left. The fact that I came to realize that 1 in 3 people with such a high EBV load as I get Lymphoma doesn't help either.

The FSM we are using is to prepare and repair my immune system so it can do it's works when/if we start anti-virals. I write if because it isn't sure that we will, I might not be able to survive that. We will certainly start autohemo therapy with pleo injection together with neural therapy.

Will write more about that later.
Devin Starlanyl, writer of 3 Fibromyalgia books used FSM therapy for her myofascial pain and improved so much that she bought her own microcurrent machine and stayed with dr, Carol for 2 weeks. dr. McMakin's web site .

My course of action goes slowly, so slowly that I'm desperate to feel any improvement, just a tiny bit would lighten my mood. W. accuses me of being fatalistic, that hurts, I see it more as realistic. He doesn’t know what it's like to be locked up in a disabled body that screams in pain every time it moves. When he comes home from playing soccer with muscles screaming in pain he knows it will be over the day after, mine never leaves it's my constant companion.

Every once in a while I can look at myself in awe, like an outer body experience. I look at myself and am amazed that I'm still able to function and wonder when I learned to scream in silent screams? Very few people can see my pain, in fact almost no one sees my pain. Even W. asks every now and than what is wrong with me, when I think the whole world must be able to see how much pain I am in. Apparently I have become a master in hiding the pain, the fear and the sorrow.

Time is running out or am I outrunning time?

If you are interested in FSM and am looking for a practitioner go to dr. McMakin's web site were you can find a link to practitioners.

The heat, intolerance and exhaustion

2009-08-10T12:36:00.000-07:00

Heat Exhaustion - Hyperthermia - [quote wikipedia] Hyperthermia, in its advanced state referred to as heat stroke or sunstroke, is an acute condition which occurs when the body produces or absorbs more heat than it can dissipate. It is usually caused by prolonged exposure to high temperatures. The heat-regulating mechanisms of the body eventually become overwhelmed and unable to effectively deal with the heat, causing the body temperature to climb uncontrollably. [end quote]

And that ladies and gentlemen was what happened to me when on a sunny Monday morning when mercury in our normal very mild temperature wise NorthWest Pacific town was rising to a ridiculous 102F and our heat pump decided to brake down.
I woke up that morning wondering if I had a bad dream because I was all sweaty, wet and nauseated, until i noticed the room was also very warm and humid. I jumped(*cough*, no really ;-)) out of bed and held my hand above one of the central air vents. Warm air was blowing out . This could have 2 causes,
1 - my husband had set the thermostat accidentally to 'heat' instead of cold or
2 - the pump just broke down and was blowing the warm hot air in.

After a check I decided it was number 2.

I panicked and mailed W. and upset email. 2 weeks before a company sent us a brochure claiming it would be a good idea before summer to have a air-conditioner tune up. i thought so too, after all I am home all day, the central air is on all day if it brakes down I'm not a happy puppy. I's like a car, you don't wait until you car brakes down but have regular check ups. But W. was sure it was a scam and just a brutal way to make some money over the backs of stupid consumers.
Well.... look who was stupid now hmm? It was me, who had to sit in the f*cking heat all day!
Funny how quickly a house heats up if you have no central air no matter how crappy it is. Within a couple of hours it was just as hot inside and it was out. Luckily after W.'s refusal to tune up the air I purchased a wind blower on Amazon thinking it somehow could be useful to have a powerful fan like unit on hand, just in case.

I turned on the fan, did a miss wet t-shirt contest on my own and sat in front of the fan in my wet t-shirt. It really helped to cool down.Of course all companies I called to come out and have a look at the heat pump where busy for days. The first appointment I could get was Wednesday afternoon. That would mean 3 days in this scorching heat! And not just me but also my pets, Lotte our oldest dog is 14 really had problems breathing and staying cool. I hosed her of every hour to keep her cool. W. took mr. puppy-dog to doggy day care where is was cool and where they have a pool, lucky bastards! W. himself went to his employer in his air cooled building and I was left at home on my own.
I did pretty well the first 2 days but at the end of day 2 I was getting really ill feelings, my heart started beating irregular, I didn't sweat anymore, my skin felt cool but it was like I was burning up from the inside. I couldn't pee anymore no matter how much water with electrolytes I drank, my body decided to hold on to it. I couldn't sleep that night, the whole house was like an oven and we had clocked that day at 108F. My body was swollen like a pregnant whale and that's how I felt like too.

Wednesday morning W. took me and the pups to a coffee house with free wifi and the dogs were allowed inside as well. We stayed there till 1:00 PM, I was still pretty optimistic, thought it would be fixed in no-time. Unfortunately the guy who came around to look at it saw a leak in the freon pipe and declared the whole stuff broken down and advised us that we needed a new system. The pipes run under the ground, finding the leak would be impossible according to him. Problem was a new system would take 2 weeks to install.
Needless to say I went berserk, I really went hysterical, and I can get real pissy and bitchy when I'm overheated. The thought of another day in this heat(it was a 114F by than) was enough to send me over the edge. My whole body shot down, I started shaking, had goosebumps, blurry vision, irregular heart beats etc the whole shebang. Typical signs that one has before going into a heat stroke. I told W. I either had to go to ER or to a hotel. I could not stay out in the heat a day longer it would have killed me. I would like to take the pets with me so they would be cool as well and so we moved into a hotel, which gave us some time to figure out what to do about the heat/cool system.

After a few hours of lying in a wonderful quiet dark room with cool air running over my body I felt a whole lot better. Still in a full flare but not at the end of a full brake down and death. Still every time I went outside to get some food or let the dog pee I got the same symptoms very quickly and made it back inside in a hurry afraid of fainting in front of the hotel guests and being taken to ER or so.

The estimate for a new heating/cooling system was about the price of a new car $16,000 - $20,000 That was a shocker. And that didn't even include the features I wanted like HEPA filtration and zone heating/cooling. To me it has always been ridiculous why I would need to cool/heat the whole house if I only use one room. So zone heating was high on my list. We thought about it over the weekend in the hotel, decided to hunt for a portable air conditioner so I could at least cool my office/room where I also have my hospital bed and I could sleep there. That wasn't easy, AC's were sold out in almost every store. In the end I found a nice one at Frys that is portable and we can use it in other rooms as well. W. installed the AC let it run and came back to fetch me from the hotel. We decided to ask a second opinion from another company on fixing the heat pump. I didn't see the point in spending a 20,000 for a system that didn't include my features.

My room was lovely cool, it was strange opening the door to the rest of the house and being in an oven again. I have spend the rest of the days in bed, really really ill, I have horrible back spams that occur when I'm upright for longer that 2 minutes. Being in the heat with heat exhaustion affected my immune system and made it work even less than it already did and destroyed a big part we were working on building up again. The viruses and bacteria in my spinal cord saw their chance and started an inflammation in my spinal cord, which renders me basically immobile.
I can't cook anymore, I love to cook and bake but I can't stand in the kitchen anymore, it's just impossible. Not being able to cook means less nutritious and healthy meals. When W. comes home from his work he's exhausted as well and doesn't want to cook so we are getting by on take out now during the week. I hate it. I want my body to become strong and eat well but I can't even fix myself a salad or a sandwich. I can't make my smoothies anymore or my protein shakes. I suddenly came to the realization that I'm really disabled now! ;-(
And with that realization I knew I had to get an electric wheelchair. One of those power chairs so I can move around the house, it will give me the rest I need so much while still being able to cook and do my hobbies.
My physician agreed with me and I'm researching models I would like. We will need to make some changes into the house, like the sunken living room floor and the bathroom so I can maneuver the chair around. Scott, our contractor is experienced in that so he will come around to discuss what will be best for me. Maybe in a few months my spine will be recovered, or I finally will be able to get rid of the viral and bacterial infections that plague me but the treatment plan we have is for 5 years so I do not expect a speedy recovery. The chair will come in handy in so many ways, if I don't need it anymore I can always sell it. For now I'm looking forward getting one and being able to do things I could not do the last year. I could even do exercises in my chair!

And the heat pump? It has been fixed for $400 within an hour by the other company. All this stress, pain and waiting for nothing just because a company wanted to sell a new system. I should sue them! ;-)

# # #

Vacation

2009-07-25T00:21:00.000-07:00

It has been a while, I didn't have much to say, my condition went in a downwards spiral being caused by a lot of stress. My daughter got married and I was to ill to fly to Europe and attend the wedding.

One day I woke up with a horrible case of vertigo but still life must go on even though I swaggered from left to right through the house steadying myself at the walls. It was so scary, I was totally disoriented and afraid. When I think back now I still get emotional about it. No one came to help me out, work was being done on the house, stuff needed to be organized for vacation and I was feeling like I was about to die. *sigh* What a mess! Reminded me of our move across the pond from France to Oregon. Same situation.

All kinds of other events were occurring that I needed to be responsible for and to be honest I had way too much on my plate to be able to execute that all. Still it needed to be done so what do you do? Yes, you function on adrenaline. And what happens when you function on adrenaline? Right again, you crash and burn. And boy did I crash and burn, not once not twice but over and over again. I knew I would have to pay dearly for that, I knew and still I went ahead. It's the sad state my life was/is in. W. was suppose to take this all off my hands but his work got suddenly an urgency that overruled all matters, or so it seemed.

Anyhow, we're back from a few days on the coast, I tried to stay in the reality and not dwell on what happened the last few weeks. It's over and done with an nothing I would do could change that, the future hasn't happened yet so I better enjoy myself today.

We or _I_ chose the Pacific coast in Washington State a small town called Westport.

View Larger Map

Reason I chose that is because cars are allowed on the beach which made it easy for me to drive my scooter onto the beach and enjoy the soft sand between my tootsies and the beach was a paradise for the dogs who could run off-leash and splash away. It was real quiet there we often had the beach to ourselves and didn't meet anyone.
Below; me on my scooter on the beach! You can see my hair has been falling out again and I'm almost bald. Boldy bald me! ;-)

Funny but after all these years of being ill I still miscalculate the amount of time I can sit in a car. I figured the drive to Westport was somehow doable and I didn't complain to W. but I was in excruciating pain when we arrived. The drive took about 4 hours and obviously too much for me.
I was out of my comfort zone but still was able to enjoy a lot of things, the beautiful beach, the no-allergies air, the walks/drives we took through the dunes etc. We were so busy doing things that I didn't get a chance to read the books I brought with me. Unfortunately the beds we slept on were horrible and it wasn't just me. W. complained about it too. After a few days he went to sleep on the living room pull-out bed/couch so I wouldn't be disturbed by his tossing and turning.

I took a break from my twice daily Heparin injections and the growth hormone injections, I just wanted to be able to enjoy myself for a change. Didn't notice much difference after stopping but I guess my blood will know ;-)

By carefully monitoring by energy levels we managed to have a relaxed schedule. breakfast on the balcony with the view of the sea, getting dressed, rest, than some activity, lunch and siesta for me. W. went swimming in the pool or for a run of the beach with mr.pup. than afternoon tea on the balcony and preparation for dinner. We bought the most lovely fresh tuna right of the boat and enjoyed that almost every day with a salad and a nice french bread. Than we would have after dinner coffee on the balcony, watch some tv, I would update my daily blog and off to bed.
A few pics with few from the balcony of our condo.

Our condo the last top floor left, and yes we had an elevator!

View to the right.

View to the left.

Sounds boring to a lot of people but it worked for me/us. Or at least I hope so. W. said he enjoyed the time together and I have to trust and believe that. It can't be fun having to slow down your life because your wife is seriously ill. I bet there are times he would love to have some action packed weekend or holiday.*sigh* but what can you do. I'm learning not to feel guilty about it, it's a slow and agonizing process.

Now we're home after a horrible drive back, I had to throw up a couple of times because I was in so much pain from sitting in the same position for some time. And with for some time I mean longer than 7 to 10 minutes.
The vertigo returned and I became disoriented, very scary. But I made it back home and I'm looking forward to spending some time alone, by myself to recover from all this. Somehow I don't believe that is going to happen, a whole list of to-do's was already waiting for me when I got home. Will have to figure out a way to get them done, I refuse to go back to the crash and burn method.

If you want to read more about what we did on vacation hop over to my vacation blog, Pacific Beach, I'm working on updating it because we had no Internet connection in the condo.

# # #

Letter from my congressman David Wu.

2009-06-05T15:06:00.000-07:00

Wow, my congressman replied to the letter I sent him! How nice. Hope it will make a difference one day.

Dear Mrs. B.:

Thank you for contacting me regarding research funding for Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). I appreciate hearing from you on this important issue.

As you know, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is a disease which has no single diagnosis, treatment or cure. Chronic fatigue syndrome is a debilitating and complex disorder characterized by profound fatigue that is not improved by rest and that may be worsened by physical activity. Persons with CFIDS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these symptoms, patients often report various nonspecific symptoms, including weakness, muscle pain, impaired memory and concentration, insomnia, and fatigue lasting more than 24 hours. In some cases, CFIDS can persist for years.

As a member of the House Science and Technology Committee, I know the importance of investing in biomedical research. I have consistently supported Congressional efforts to double the National Institutes of Health (NIH) the budget and continue to support funding increases to the NIH. I strongly support increased research into the causes and treatment of diseases and medical conditions, including CFIDS. All Americans should have access to effective health care, treatment and prevention in response to all manner of health issue. As Congress continues to debate funding for CFIDS and the CFIDS Advisory Committee, I will keep your thoughts in mind.

Again, thank you for writing to me with your concerns and for sharing your experience. I appreciate you taking the time to advocate on behalf on the millions of Americans who are affected by CFIDS and related disorders. If I may be of additional assistance, please contact me at my Oregon office at 503-326-2901 or 800-422-4003.

With warm regards,
David Wu
Member of Congress

Isolation, loneliness and going insane with ME.

2009-06-01T01:03:00.000-07:00

Another beautiful image made by the wonderful Vlad.

Some of you asked me in private what's up with the isolation complaints.
Well it's like this; we lived in California from 1999 - 2001, fall out from the 911 disaster forced us back to Europe and my W. favorite was France, mine was Scotland. I did foresee big problems because neither of us was fluent in French, fluent enough to read legal papers and deal with authorities. But W. promised to work on that and that it would be his responsibility to deal with them. We also promised each other that if it wasn't working out after 3 years we would leave and move on.

In France we found a lovely home in a very small and rural town in Bretagne/Brittany. Lovely but isolated. First thing we learned was that after being used to living in California it was difficult to make friends in the northern part of France. I especially write the Northern part because obviously friends who live in the South did not have the same problems we had and did make some nice French friends.
For me I think the problem for the Bretagne people were the thousands of Brits who move to the area and did very little to integrate into the French way of life. The French would consider them very rude with their demands of speaking English and not observing the French working/free hours. While we were trying they did not knew the difference between a Dutch couple or a English couple.

Because I took care of lot of the move details and organizing my health was gong backwards with huge steps, it also didn't help that I could not get the medication I used in CA. French rely for a big part on their own produced medications and do not import much. Doctors refused to read my medical files and wanted to start testing all over, didn't believe my diagnose. All in all I became really sick real quick. because of the medication I use I can not drive and while living so rural does have it perks it also isolates you from the rest of the world. W. worked from home and emerged himself in that. Starting to work at 9:00 or 9:30 and worked till 8:00 PM than dinner, some tv and back to his work.
Needless to say that this wasn't working out for me at all, after 3 years of trying to find some decent medical help and to make friends and have a social life I called it a quits. When Intel and Google contacted W. with a job offer we accepted with both hands.

I was so excited and dreamt all day about making new friends, finally do all those womanly things, like shopping, gossiping, chatting, having a cuppa or a glass of wine together!
Finally doctors who believed that I was ill and get my medication back, I dreamt of going back to school doing cooking classes, painting, volunteer work, driving my care everywhere!
Oh to finally have a life again!
However also this time the organization of the move was on my shoulders and I overdid it.
The first 2 weeks here were fine and than I started fainting everywhere, I contracted another complication, NeuroCardiogenic Syncope( Fainting because of sudden drop in blood pressure) and Cardiacmyopathy, deterioration of the function of the heart muscle.

I could not go out anymore by myself, it was too dangerous. I could fall on the street and get hurt, I fainted in stores, while waiting for the bus and driving was out of the question too.
And while I did find a wonderful physician and am receiving treatment now after 3 years I'm still at the same spot as where I was when living in France.
I can't go out to make friends, I can't do a course because my cognitive function is also affected, short term memory is horrible, everything I have learned today will I have to do over again tomorrow. Besides that an hour in the company of strangers wears me totally out, I will be exhausted and have to stay in bed for at least 3 to 4 days to recover.
No new friends means, not many people you can call for help, a drive to the store or a dr. visit. I have to rely for anything on W., every little thing I have to ask for. Pick up my medication, books from the library, women items from the drugstore etc. it's embarrassing and degrading.
I know he doesn't mind but I do, I would love to feel like a woman for once again. With nice clothes and some perfume, have my nails done and look and feel great.

I'm making some progress though, it's just baby steps. I now have a electric scooter that I can ride to the library when I feel good enough, but further than that there is no store of coffee shop in our neighborhood because when we choose this location we didn't expect that I would become house bound, if we had only suspected it we would have moved to the inner city where I would have had access to the stores and café's right away. We have been thinking of moving to another location, especially when W. is on conferences I'm all by myself with no access to the basic elements of life. But with this housing slump there is no way that it's going to happen any time soon. Our neighbors home was on the market for 2 years and they just sold in last week.

And now with the flu I have to stay at home even more, I can not go out in big public gatherings like a market or a festival like the one that is going on at the moment in Portland, the Rose Festival. It drives me up with wall sometimes and I'm ready to peel of the wall paper with my nails. Sometimes weeks go by without speaking to another human being than my husband. it's a good thing I'm an introvert, an extrovert person would prolly have killed herself by now ;-)

So that's why I'm isolated and yes it is lonely, at times it feels like my spirit has died and I don't recognize the person I have become. If I didn't have my electronic gadgets that let me connect to the Internet, my window to the world I would go insane. I hate what this disease does to me and how it limits the way I want to live my life.

# # #

I'm still here!

2009-05-31T01:17:00.000-07:00

Have not been keeping up the blogging thing. I have been feeling rotten, isolated and started to have a pity party. Every now and than one needs to have a pity party cause no-one else will do it for you ;-) Instead of writing about I withdraw into my own introvert world and try to deal with it.

Depressed, down, treatment not making any progress at all, one year anniversery of the death of my heart and soul dog Gwen. God, I miss her so much. I still believe she will come out of her crate any minute or see her in familiar places. I miss the way she always comforted me, how we would lay on the bed snuggled, her soft silky fur going through my painful fingers and how she would push her back into my tummy trying to get as close as possible. Those soft sensitive ears with the silky fringe that I keep in a box in my drawer, the fringe not the ears of course ;-)
I miss her in so many ways, the unconditional love that she gave me for 12 years, I miss that the most. Because lets face it, humans are not capable of giving unconditional love like that, there's always a hidden agenda with humans, whether that is you spouse, a child or a friend, it doesn't matter. It's my experience that humans are not capable of giving that without expecting anything in return.

I love Fynn, our new pup very much, he's a wonderful dog in his own way. I just don't have that spiritual connection (yet) with him that I had with Gwen. Maybe it will grow, I don't know, right now my yearning for that connection is big and I miss it. Especially when you are living far away from family, old friends and being isolated like I am, a special bond like that with a dog can make a world of difference.

This flu thing is still making it's rounds so I am still on house arrest, no public places for me yet.

The Heparin injections are going fairly well I'm now onto 2 daily 2000 units which still isn't much, normal range is 5000 units 2 x daily. Only thing I noticed is the blue bruises where I inject myself and the nose bleed that wouldn't stop yesterday. Bright almost fluorescent red blood was pouring out of my nose like it was the Columbia river on it's way to the Pacific! I finally managed to stop it with an icepack, so we know the Heparin is doing its job.

The Human Growth Hormone injections are going every other day and the Energy(Glutathione/B12/B6/Folic Acid) are on every day, yay! Not really Yay! because they are horrible painful injections, I'm still not used to that and when your whole body is hurting a small injection can send you over the edge.

The results of my 21 vials/tubes of blood test will be in by now and I'm curious to see if some things improved. My Epstein Barr reading was 1:11000 instead it the normal range of 1:10. Nasty buggers!

Well that's my update for now, I'm working on some new artsy projects to feed my spiritual side, at least the weather is beautiful. But for someone with photo sensitivity like me you have to stay inside or pay for it dearly with a hyper immune system reaction. Everything outside looks so much nicer though and people are happier as well.

I guess we all ME/CFIDS people are waiting what the FDA will do about the Ampligen medication. Will they allow it as first treatment for ME/CFIDS or not?
We wait and see. Personally I think all this waiting ans creating suspense is driving up the Ampligen stock like crazy and I don't think that is ethical. But who would suspect the FDA to be ethical right? No one in their right mind would think so. After all the people actually making the decisions are all on the boards of the big pharmaceutical companies, it's only logical they will try to drive up the stock price. The FDA almost sucks as bad as the CDC, and don't get me started on the CDC and ME/CFIDS! ;-)

All this excitement is not good for me, I'm off my high horse now and back to my crate ;-) G'nite you all.

# # #

Just one of those days

2009-05-02T00:46:00.000-07:00

Hectic and not on my regular schedule.

Always confusing and distrupting, but we're trying to go with the flow. Today is Friday and that means weekend is up. I used to like weekends now they’re just disruptive.

As a M.E/CFIDS person one needs a schedule or at least I and some of my online friends swear by a regular schedule. If you don't, you more than often end up doing too much and paying for it dearly. Like now. Typing is difficult, I type the wrong letter in the wrong place and thank god for spellcheckers. I'm just too tired and wired and should go lie down, but I want to keep my blog up now that I'm writing again.

So weekends are disruptive, we sleep in, have breakfast too late, I get to have my siesta too late and than dinner is at 8:00 PM or 9:00 PM still on French time. I know I could hold on to my schedule but my weekends are for my hubby, he already has enough on his plate dealing with a spouse with a chronic illness, the least I can do is try to let the weekends be as they were before I got so ill, wayyyyyyyy back many many moons ago when I did not have to live like I was a 106 y.o.

Well, the decision has been made. I can not attend my daughters wedding. I know, I know, dr. V. told me that months ago but still I tried very hard to get better and inside you hope against everything that he is wrong. But he wasn't, when he told me I was a very very sick person I kind of looked at him in disbelieve. No dr. ever told me I was very very ill, they didn't even believe me when I told my symptoms and struggles to stay alive. When they tell you It's All In Your Head (IAIYH) often enough you start believing it yourself a tiny bit. So I guess it needed time to sink in what dr. V. told me. It scared the shit out of me of course, and for a while I ran around not knowing what to do to make it all better in an instant. But alas, what was build up in more than 30 years can't be cured overnight, and patience is a virtue. Not my strongest point though.

I wanted to go and be at her wedding so much! Doesn't every mother? Of course it hurts and I've cried my eyes out but I'm not concentrating on that anymore. If she would know that I would be very sad and crying it would spoil her happy day and that's not what I want, so forget me missing that day and lets focus on making her day the happiest day of her life. She will have loads of friends and family there, her father will be there and it will take away some stress also. There was a bit of uncomfortable feelings from people who haven't seen me since she was a tiny baby and there was hesitation from their side if they were going to attend or not, well now they can. ;-)

Of course she was sad, but being her mother's daughter she said she saw it coming and it wasn't a surprise I wasn't cured overnight. A 12 hour flight, plus hours of check-in and security plus jet lag and mix in airplanes being breeding nests of viruses and bacteria, stress of meeting someone who abused me, add all that up and it's a recipe for a disaster waiting to happen.

They anticipated that I wouldn't be able to be there are will make a video so I can watch it later and we will video chat online of course when she gets dressed in her gown so I can 'kind of' be there.

I hope the flu pandemic will have fizzled out before their honeymoon to Aruba. it was our surprise gift to them, a once in a lifetime romantic holiday!

All in all I had much to deal with lately, it all starts falling into place again and I hope we will have no more surprises or crisis'. ;-)

Time for my injections, g'nite all.

# # #

Dr.V. Visit Update

2009-04-30T22:13:00.000-07:00

The picture below is one of those uplifting message I get send from the TUT club. I have been a member for about 8 or 9 years I think, long before The Law Of Attraction became a media hype we were already discussing Thoughts become Things and receiving daily Notes From The Universe. It's fun, it's uplifting and you are the total focus and I like that ;-) The picture below if drawn by Andy Dooley, Mike brother and they always make me smile. You can't read the words very well by it says:

Everything happens in your life for a reason,
Whether it's short lived, or for a season.

No matter how bad it might be,
This too shall pass, as you will see.

Every problem you face is a gift to grow,
Look within your heart and let the love flow!

Well, it took me more than a week to recover from that visit. Boy was I down in the dumps! It all started when I arrived at the clinic and Mark told me dr.V in all his wisdom had decided this was a good time to get re-tested. Which meant 21 vials/tubes of blood. Poor Mark, who is the lab technician of Quest Labs and has an office in the clinic, his computer system was down and he had to do all the admin stuff by hand not fun! I have hyper-coagulation and thus very thick and sticky blood that comes out in drops instead of flowing nice and freely. But Mark is a very good it only took him 6 times to get the full 21. A record!

I was happy to see dr.V and he was happy to see me, it's always nice to know you're liked by your physician ;-) And he is so driven and enthusiast and that's very catching. We discussed my bladder problems and he promised to look up a homeopathic remedy and said we should do an ultra sound to make sure nothing nasty is in the way. Discussed medication and the fact that I'm not doing well on any chemical medication, no progress with anything we tried and we tried a lot, from thyroid medications and hormones to antibiotics. I'm very low on my Thyroid so one should expect to improve with thyroid meds but not me, I get worse. I have almost no progesterone or DHEA and if I take some I get horribly and violent reactions. Same with serotonin. If I take anything that affects my serotonin I become suicidal.
I'm a freak of nature ;-)

Anyway we added new supplements to my already full program. DGL which I absolutely love! They are chewy tablets that taste like good Dutch licorice so I can't wait to take them twice a day. They sooth the stomach lining and digestive tract which has been affected by the darned antibiotics.
Further dr.V. suggested we started Heparin treatment, because I am so hyper-coagulated it is important to treat that and injections with Heparin is one way to do that. I inject myself twice a day with 1/10 or the treatment the 'normal' people use. Normal dose is 5000 units 2 daily, I use 500 units 2 daily. Since already a week has passed I can tell you it was mighty difficult to get the Heparin. After I got home I discovered Heparin was recalled last year because it was tainted in China and there were a lot of deaths here in the US. I must say I became a little worried, but I do hope that other pharmaceutical companies made sure they didn't have the tainted kind.
I finally got some yesterday, the clinic was so kind to send me some because no pharmacy wanted to order them for me. I have no idea how pricey it is as I have seen no bill yet ;-)

What the Heparin does is dissolve the sticky stuff in my blood vessels and arteries so the immune cells can enter through the artery wands and do their job i.e killing the nasty bugs and viruses. The side effects of Heparin will be a herx reaction (yeah!! looking forward to that ... not), bleeding, blue bruises etc. this is all at the normale dose but because I react so strongly to anything we expect me to have the same reaction on a low dose.

Tonight I took my firs shot, so I'm now up to 4 different shots a day and I even heard dr.V mention of giving colloidal silver intravenous when the going gets though with this H1N1 influenza! I'm starting to feel like a junk ;-)

Will keep you all posted on how this new Heparin stuff is going to work.

Of course I had a very strong reaction to giving so much blood that I relapsed and was basically house and bed bound again for a week. All my muscles joints and organs hurt,and I had a fever.
One good thing came out of it, it all of a sudden occurred to me that I also could very well have trigger points that would or could point to pelvic pain. I looked it up in Clair Davies 'The Trigger Point Therapy Workbook' book and lo and behold there it was. I got out my Sonoform Ultrasound massager and treated the points he mentioned and today already feel a lot better, so I hope I'm on the right track.

# # #

Monthly dr.V visit

2009-04-22T00:43:00.000-07:00

My monthly visit with dr. V. in the FFC clinic was on the program today. Which always means a lot of stress in making sure to be ready in time. Showering needs to be done etc.
To give non CFS people an idea how that looks like I will share this experience with you. ;-)

My appointment today was at a convenient time at 11:30 AM.
Last night I didn't sleep well, my bladder pain was troubling me, no matter what side I lay on there was this throbbing pinching pain. The last time I looked at the clock it said 4:32 AM. I finally drifted away on a dream filled cloud. Got up at 6:00 to go to the bathroom and again at 7:15 so no refreshing sleep for me. Stayed in bed until 9:00 AM.

9:00 AM stretch, open up one eye to see if the world agrees with me today. Open up blinds above me to let sunlight into the room and wake up. Get iPhone, check for important/exciting/fun/loving email msgs, nah... none. *sigh* Check other email account, nah.. nothing only spam. Pet the puppy, snuggle with him, do everything to delay actually getting up. Puppy pierces my ear so I can wear another set of earrings and makes it not easier to stay in bed. Wants me to get up and play! So far for support from your pets. *mumble*

9:15 Carefully sit up, make sure not to sit up abruptly and end up passing out. See if legs still work because feet feel numb. Shuffle to the bathroom, thanking the good spirits that our room is so small that I do not have to walk very far to get there. Avoid looking in the mirror as that only depresses us more. Sit on the toilet to rest, try to fetch the towel hanging too high on a hook while sitting, dang..... hook popped out of the wall. Get up, get non-smelling shower stuff because people in clinic do not appreciate smelly shower stuff on other people and head to W.'s bathroom in the hall because he has a bath with a shower and handrails that I can hold on to. I'm almost there when I realize I forgot my sponge on a stick, shoot will have to go back now. Have to rest on the toilet again before making the trip to W. bathroom again. By now it's;

9:30 Stand under warm water, not too warm because that makes all the blood run to the surface of the skin and not enough to send to my brain which will make me pass out again, wouldn't be the first time, you learn pretty quick when you keep falling on the sharp edge of the shower stall. Call W. for assistance in washing while I hold on to the rails. He washes my hair and all other parts, luckily he works from home today. Rinse,... oh oh turned too quickly and see the room spinning, wait for it to stop. Stupid room. Fetch towel and towel off partly dry, now need to step out of the bath. Stupidly enough there's no rail to hold onto while stepping out, make mental not to fix that. Wonder how long mental note will stay in memory ;-)
Shower as short as possible, can not remember the day that showering was a relaxing wonderful experience that could easily take 20 min.

9:40 shuffle partly dry to the bedroom and fall on the bed exhausted. W. makes sure I lie down ok and goes back to work. My head is pounding just like my bladder and I'm damp and sticky. Try to ignore uncomfortable feelings and practice zen.
Oh God I'm tired!

9:55 get up slowly, am almost dry except nooks and crannies. Brush teeth while studying self in mirror. Hair is falling out again, need to clip it so it doesn't look funny. *sigh* *double sigh* Dark circles under eyes looked interesting end 60's now it looks plain horrible. I don't know the person looking back at me and wonder who she is. I know she could use a spa pampering, a mask, some eyebrow therapy and loads of camouflage make-up to cover up all the marks of a chronic ill person.

10:12 Stand in front of closet try to decide what to wear that I can take off easily and also put back on by myself. Something that doesn't hurt my skin while I'm wearing it would be nice also. There are days that even the seam of a soft t-shirt will hurt so much it's unbelievable. Decide to wear loose sports capri with tank and cardigan and of course flip flops. Can't put on regular shoes by myself. Feel like a toddler.

10:23 have been sitting on the bed while struggling to get bra on. Feel tears of frustration coming up but ignore. Wrestle and finally it's on, now pants, one leg goes fine other one is stuck in the leg. Damn!!! Getting angry doesn't help either. Rest for a while while trying to think positive thoughts. Finally leg goes through and I can pull up the pants. Am sweaty and exhausted again! Wonder what it was like to feel like a woman, sure as hell didn't feel this way!
Put head through the tank and am happy it goes on so well, nice tank! Only to discover I got it on backwards. *sigh*.

10:40 now and I haven't even had breakfast yet. I should dhave eaten before I went to shower. Rest on the bed, take meds and there is W. with daily injection. Okaaaaaaaayyyyyy. Have to pull pants down again for injection, oh dear Lord it hurts like hell. I don't know why that stuff need to hurt so much. Suppose to be 'energy injections' Ha! Pfffffft energy injections!! Think again positive thoughts and imagine fluid spreading fluid wave of energy through body. Must try harder next time, didn't work. Now need to stay in this position until it doesn't hurt to move anymore. Feel wave of exhaustion overtaking me and I drift off........

10:55 SHOOT! need to hurry now, quickly grab energy bar, bottle of water, medical history file and file with notes and out of the door. Will pay for surge of adrenaline later. Can rest in the car on my way to see dr. V.

11:05 sit in our comfortable Saab and enjoy the scenery, if you don't get out much the scenery changes quickly in the spring, trees are blossoming, people smiling because of the sun, nice! Ignore bladder that tells me I should have gone to the bathroom before leaving the house. Will go at the clinic. Arrive nicely in time at the clinic at 11:30.
Are you tired yet? ;-)

Will report tomorrow about dr. V.'s visit, need to catch up on some sleep now.

# # #

Today's a bit better(knock on wood)

2009-04-18T01:53:00.000-07:00

After the disaster Wednesday, a day I can't remember much from but I obviously wrote my blog, I started to feel a bit better this evening.

Wednesday was horrible, I was doubled over from pain and shivering with fever. Strangely enough whenever I have a fever all my joints start to hurt immediately, like that inflammation has been dormant and they all of a sudden realize it's time to wake up and have some part of the fun and action. Thanks guys!(of course they're guys ;-))

Thank god for morphine, it lessen the pain a bit but mostly it shuts down my mind, I will float in blissful slumber in and out reality and have less pain that way.
We CFIDS/ME people have a problem with our opioid receptors, they are less sensitive to opioids and unlike other people we do not process the pain relief the same way as others do. There was actually a study done recently and it's encouraging more researchers are now looking into it.

A friend of mine who is a Eastern Physician gave me the tip to start drinking Cornsilk tea. Also known as Zea Mays. Corn silk works mainly in the urinary tract. It acts as an anti-inflammatory in the body and as a healing agent, it has a soothing effect to irritated tissues. The potassium balances out the diuretic effect of the herb, which useful in water retention. Corn silk is thought to have a beneficial effect on the kidneys, reducing kidney stone formation and relieving some of the symptoms of existing stones.

I send W. out into town to score me some of these herbs and he came back with a nice bag of fresh herbs bought at the Limbo store(thanks Carter!) so I could make tea. I have been drinking it faithfully and it does taste nice and smooth. Together with the pills dr.Shyui Dong, the acupuncturist gave me I think and hope it is improving. Tonight for the first time I had less sharp knives piercing my pelvis and bladder!

In my quest for find an additional general practioner I came across an interesting article about dr's making housecalls. Just what I needed and organization here in Portland that makes housecalls meant for people who can't leave their homes to visit a physician. I was very excited about it, I really can't visit a dr. who has a waiting time of 1.5 hours in his office. If you know how much energy it takes to only get washed up and dressed, you will know that leaving the house and sitting in a waiting room for 1.5 hours is not doable. I would have to pay for that for days to come.

So I applied to become a patient and was told on the phone immediately without they even questioning me who I was and why I wanted to become a patient that I didn't qualify. What was she psychic? Could she look through the phone ans see and diagnose me? No, the service was for older people only she said, well I am older I replied, but apparently not old enough. Ridiculous! They should have mentioned that on their web site! Chronic ill patients and under the age of 90 should not apply. Gheez!
Than in the end when I protested she wanted to know in a very humiliating way why I couldn't leave my home and I explained about the M.E and CFIDS. Well now I certainly did not qualify, they only treated people with real illnesses. EXCUSE ME?
Please walk a mile in my shoes, if I would be able to do that that is. Stupid &*&^%&^%$$! Anyone who's reading this in the Portland area and wants to have a peek here you go Housecall Providers Inc.

I could have protested and sent emails and become angry but I just decided to let it go, she has already made up her mind about me and my illness so it was a done deal. Can't spend any energy on people that ignorant.

So my search continues, somewhere there will be a physician who still makes housecalls and I will find him/her!

Time for bed, night night.

# # #

It's been a week...

2009-04-16T01:05:00.000-07:00

A week that I spend most of the time in or on the bed. Every day I planned to write but just couldn't spare the energy and inspiration of doing so. Anyone familiar with the 'Spoon Theory'? Well if you are I can tell you I chronically had to lend spoons on a daily base from weeks ahead and we all know what that leads to. If you click this link the Spoon Theory will be known to you also and you can begin to understand what it is like to live with a chronic debilitating exhausting illness.
Or you can print it out and send it to all you friends, co-workers and family. I'm sure they will be surprised of how little they knew about what it's like to be you.

My first appointment with the acupuncturist went very well. She totally understood what I needed, additional therapy to support my body in becoming stronger and more energy. Stronger so I can withstand the treatment of killing off the viral and bacterial infections that taken up house in my cells.

The treatment took over an hour, my insurance pays for 20 treatments so that is nice. Additional I received some herbal medicines that are going to help with my Qi and energy. After a day I noticed a more upbeat mood and even some hope for the future, my bladder infection was less and I even started to think about doing some art work! However on Friday my UTI was back in full force and it is so painful I often doubled over and couldn't get up. I have had kidney stones before and am afraid this is being caused by one as well. But the on the other hand the Chlamydia and Mycoplasma infections that I have can also cause UTI's.

Being in so much pain got me irritated and snippy, I didn't feel like doing anything but went out anyway. Stupidly enough I went to sit on a cold bench in a doggy park, what was I thinking? Not obviously!
By Monday I couldn't get out of bed but had to because mrs.Mop was due to arrive to clean the house and it needed to be tidied up, otherwise she cleans around it but not under it. So I crawled through the house, crying my eyes out because of the horrible situation I'm in. W. had left for work early and wasn't there to give me a hand. It sometimes feels like I'm in a horror movie and I think 'this can't be my life, it just can't'. It's so surreal.

Today was my second acupuncture appointment, I told her about the UTI an she offered to treat it right away with acupuncture. When she placed those needles at the bladder points it was like I got an electric shock, it was very painful, it did become less after a while but according to my dr. this was a good sign, she placed the needles at the right point and healing could begin.
I also got some herbal pills for bladder and bacterial infections called Chuan Xin Lian and what I did read about it sound very promising so here is to hoping it will do the trick.

At home I rested a bit and drank some tea on the couch, when I got up I passed out. Flat out to the floor, luckily nothing was in the way and I didn't hurt myself. It has been a while since I fainted, I guess this time it was from the stress of the past days and the pain and fever. My pup was sitting close to me, worried about what was wrong. We spend the rest of the day with my morphine pills in bed.

Hope tomorrow will be better, today it felt like this could easily be my last.

# # #

Tomorrow is another day

2009-04-07T23:28:00.000-07:00

True.
For some it isn't of course, one never knows when tomorrow stops being another day for you. You can be doing your thing, in the gym, at home, reading the newspaper, walking the dog and next thing you know it's over. Or you could have a nasty illness that is eating away at you, but still, you won't know until it's over. Unless you arrange the time of death yourself of course, but that would take away the element of surprise. But that was not what I wanted to write about.

I wanted to give an update my treatment plan and tomorrow I will add acupuncture to it. I will go and see a acupuncturist who is conveniently located down the street and over the hill. I will go on my own, with my scooter no husband accompanying me. This will be a first, I'm scared to death the scooter will stop working. Her batteries have been kind of off lately, she doesn't run as fast anymore as she used to and the last time W. had to push me up the hill.
I can already see myself stuck in the middle of the road and no way I can push that scooter by myself. What to do? Do I call the automobile club for assistance? The police? My husband? Do I leave the scooter standing there and attempt to walk home? W. says he took the scooter and the batteries to the battery shop and they checked out okay, so I guess I should put my trust in that. ;-)

The acupuncturist who I'm going to see said she had experience with people with CFS and they all improved greatly she said. We'll see, it's not the first time I try acupuncture. I mainly need it for my joints who are hurting so much as a side effect of the HGH injections. I'm hoping to get some relief and maybe even the numbness of my hands could be treated. That would be great.

I think combining eastern and western medicine is the way to go, getting the best of both worlds.

8 weeks ago I started a non systemic antibiotic treatment, which basically means the antibiotics are not being absorbed into your blood but stay in your intestines. My level of ammonia in my blood was high and dr. V. wanted to lower it. To be honest it is the worsted thing that has happened to me in a long time. It totally messed up my bowels, I never ever had a problems with my bowels before. I have had my share of constipation and diarrhea, but everyone has had that problem when using opioids as pain medication.
I also needed to take an awful tasting liquid called Generlac to make sure I would 'go' often enough to lead the bacteria out of the body.
Well I was in for a treat! Horrible stomach cramps, gas, bloating, nausea, more cramps 24/7. Really, I rather give a natural birth to a child than go through that again. Strangely enough when I got tested again after the first round of antibiotics my ammonia was UP instead of DOWN! What's up with that?

Dr. V. was clueless also, he had never seen that before. His answer to this phenomenon was a higher dose of antibiotics for another 3 weeks. Than a week rest and a new test to see what's up. Well I am in my rest week now and I can announce that not only are my intestines totally messed up, painful, sensitive, inflamed and crampy but my bladder is also inflamed. Feels like I need to pee all the time but it's a different feeling than having an UTI.

I did some research and the word is that yes, bacteria do leave your body but with the diarrhea and the sensitive thin wall of the intestines and the vagina it's very well possible that some escaped to my urethra. The walls have become thin and fragile because of menopause and illness and are thus less resistance for bacteria. Jay! As if I didn't have enough to worry about. Truly, every woman who had an UTI knows how horrible it feels. I have been drinking loads of cranberry juice, take cranberry pills and homeopathic solution called Solidago or Goldenrod. So far it doesn't work and I'm getting irritated with that gut awful painful feeling that you need to pee all the time.
Will do some home test to see if it's not an UTI and than let dr. V. decide what to do next.

The next course of action would have been the bacterial infections fight. It would take multiple rounds of antibiotics and I'm not looking forward to becoming so ill and herxing again.

Well, first lets wait and see what tomorrow will bring us. It's always a surprise isn't it? ;-)

# # #

The Spring Blues

2009-04-07T15:37:00.000-07:00

Is it strange how some people can't seem to understand how devastating it is having to loose you life like you do when you have M.E? Even though they have known you for years. I keep getting amazed by hurtful remarks made without thinking. As always when spring is here I get sad, melancholic and a bit envious because I see people smiling, enjoying the outdoors having fun with each other, happy the dark winter time is over. While we people with a house bounding chronic illness like ME/CFIDS are still locked up inside.

After all these years I still struggle with that, I can feel so much anger and longing inside that it feels like I could burst every minute now. Obviously it doesn't show, no one ever asked me what was wrong and how did I feel today.
I long to be able(instead of being dis-abled) to hop into my car or ride my bike and go to town, stop at my favorite coffee joint and drink an espresso on the terrace while enjoying the scenery or reading a newspaper. Walk to park and have a picnic with W., it seems light years ago since we did that. God how I miss that!

I can stand all the pain, the uselessness of my body, the numbness, the inability to move, all that is physical. What I can't deal with is the lack of nourishment for my spirit and soul. It feels like it's dry like a riverbed in the desert. I need to find a way to connect with like minded people, a good conversation, sharing a laugh, enjoying a meal together, just exchanging a phone call saying hello and how are you this morning.
It has been too long since someone asked me how I was doing that morning, did I sleep alright? Is that pancreas still giving me any pain? it would make a world of difference if there were some good friends who I could share the up and downs, the trials but also the highs with. At the moment there just isn't and I'm not joking when I say that it slowly kills me.

Today someone who should know me better suggested I should go and sit in a park on a bench an wait till someone would approach me for a chat. It hurts to think that they would think I would be so desperate that I should go and sit in the park and practically beg for some attention.
I'm human, I have a right to have likes and dislikes, because I am disabled doesn't mean I have to settle for less. I have a right to like taking classes, go swimming, go to a workshop, drink a coffee on a terrace. Why should I settle for sitting in a park waiting for someone to approach me, I would feel very awkward. Do I have to give up all my dreams and my likes and wants?

Funnily enough is that also always the question therapists ask in one of their first conversations, 'Make a list of all that you want' or 'What is it that you want?'. Than when you make that list or tell them what it is that you want it turns out to be totally unrealistic and not possible to achieve.

A therapist I spoke to suggested hosting afternoon teas for friends. A lovely idea, something I would love to do if.... I was healthy and actually had friends to invite.
Someone who is bed/house bound like me can't prepare a high tea, let alone having the strength to sit through one and not being overwhelmed by all the stress of organizing. As I said, not practical possible. The trick is to find something that is still enjoyable within my physical limits. It is becoming increasingly difficult to achieve that.

Weekends are full with being as 'normal' as possible for my husband, go to a grocery store, go a doggy park and my weekend is gone again, and I will have to pay dearly for these activities. Don't get me wrong I do enjoy the time with my husband but I would love to do something that was on my list of enjoyable things like visiting a museum or a concert.

Right now, I'm gong for a nap and hope this horrible melancholic, homesick feeling has lifted when I wake up.

# # #

Spring Cleaning!

2009-03-17T13:46:00.001-07:00

Yes I needed to spend so time to let my creativity out and redesign my blog. Hope you like it.
Today Jennifer Louden on her blog over at The Comfort Queen asks;
'Is there anything you want to take a break from this week?' 'Any part of you that is ready for a rest?'
Does she need to ask? Heck yeah!
My whole being needs a break from this life. Gosh wouldn't it be handy if there were just a couple of parallel lives that you could join? When you were tired and worn out in one just join another and come back refreshed. Now there's a thought, I wonder why no-one else has thought of this.
Let you body rest and heal in this life, join another and in a couple of weeks you motor is up, running and purring like a kitten again. Also handy for medical procedures, just leave you body in the hospital and come back when all is fixed! A bit like a car into the garage for a yearly service.

I have a too big imagination. Always has been my problem, I see possibilities and images that others don't seem to get. It does enriches my life though ;-) I'm never bored, can't remember the day I was ever bored. Just close my eyes and travel into my brain. ;-) Do others have this as well or am I just a freak or very special? ;-)

# # #

Happy Holidays!

2008-12-25T01:53:00.000-08:00

Living with your limitations

2008-12-23T13:59:00.000-08:00

Living with your limitations......
A couple of days ago I posted on a message board those wise words and how I (try) to live with that. I wrote wise things such as knowing what your limitations are and enjoying the moments that you’re able to see beyond your limitations and being content, or trying to be content with that.
All very inspirational and true, and if I read it know I think ‘oh gheez get of your high horse!’. Little did I know I had to eat my own words a few days later.

Well, I guess I _do_ try to live within my limitations, I mean I have to, what choice do I have? The other one is not to live at all and believe me sometimes that does feel like the better option. Like today for instance.

I don’t know if it’s the weather(22“ of snow and ice), the fact that my husband went out without me and even though the weather is horrible I would have welcomed getting out of the house even if it’s just for a few minutes and a quick coffee somewhere, or the fact this pain from the side effects of the HGH injections is gnawing away at me, or the fact my daughter just send me pictures of her buying her wedding dress with 2 complete strangers(at least to me).

I’m just so freaking mad and upset with this illness, why do _I_ have to live this way, if you will call this living. I’m at that point again that I look with envy at others who are going about their day to day stuff without realizing how privileged they are. I’m mad because I’m not able to hop on a plane and fly to Europe to go wedding dress shopping with my daughter. I mean how many time do you get the chance to do something special like that with your daughter? It’s a typical mother and daughter thing and again I’m absent. I’m mad because I feel I’ve let her down on this special and intimate occasion and so sad that we can’t share this milestone together. I’m jealous because she is sharing it with her mother-in-law instead of me. Not only am I missing out on so many things but so is she, this horrible illness is affecting all people in my life, not just me. When I saw her photos of trying on dresses my heart broke, it was THE one thing I wanted to do with her. I’m happy for her of course, she looks stunning in her dress, and I will have to get over this, it is what it is. Very little I can do about it.

I’m looking out of the window, my limited view of the world, it’s the same as it was 3 years ago when I moved in here, it’s hard to believe I have been living like a hermit for 3 years now. It’s hard to believe the dreams and plans I had when we moved here, drive, travel, swim, go to bookstore, browse little stuffy antique stores, go to cook-offs, see America, get my green card(check, did that), start a small business(ha ha ha, who was I kidding?), go to school, learn new things.

Who could have imagined that the moment we moved into this house the door to the outside would be locked for me and all I would see for the next 3 years would be the house across the street and our yard? Not me, that’s for sure! I was still fairly optimistic when we moved here, after all, I organized the whole move and everything. Hindsight, that probably did me in. When I started fainting and started to have black outs a few weeks after we moved I knew I was in trouble.

Over the years my world has shrunk to these 4 walls and I thank the Universe for my computer and reliable internet connection, it is my connection to the outside, without it I would be lost and probably wouldn’t survive.

Now we 2 days left till Christmas I do not feel ‘the spirit’ at all. In fact I am upset, hurt and more lonely than ever. It has been a rotten year and I sure hope the next one is going to be better.

On days like these I miss my beloved Gwennie, my Border Collie, my heart and therapy dog more than ever. In earlier days she was always there to let me cry in her fur, lick away my tears and give me comfort by molding her warm strong body into mine and we would lay on the bed until I felt better. Now she’s gone and I feel hopelessly lost and alone. The animal communicator told me months ago that Gwen thought I would not be able to cope with the loss of her. She was right, I can’t. I try, I promised her I would try with all my might but it’s so hard. I know a few people who will read this will shake their head and laugh about it, grieving so much about a dog! What a waste of time, get a new one! That’s alright, they don’t understand the soul and spirit connection I had with her.

I think I will take some rest and go to bed, maybe things will look better after a nap.

On the health front; I’m getting now my daily Human Growth Hormone injections which have the nice side effects that my hands and arms are numb and I have RSI in both arms, at night I wake up and can’t feel my arms or am able to open a bottle of water to take a sip or hold a cup. Picking up meds that I need to take is hopeless as well. I’m totally helpless and need to wake W. to give me my meds. But besides the numb feelings it hurts like hell. Muscles and small bones grow(growth hormone) and nerves in those areas get compressed and hurt.
But we hope it’s for a good cause because I need those Natural Killer Cells. Lets hope the other side effect such as LEUKEMIA passes me by. ;-(

That every other day W. gives me my ‘energy injections’ Lord knows why they’re called that they do not give me any energy at all!

Well, off to bed and sleep off this horrible feeling!

# # #

Back to Earth

2008-12-08T16:04:00.000-08:00

Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is possible.

I try to life like that and every now and than it turns around and slaps me into my face. It lets me know that I might indeed expect too much and that all that dreaming leads to nothing. But I am learning more and more every day how important it is to care myself as if I was my own best friend. And yes, I do risk a lot and no it’s not safe, but what choice do I have?

I have been floating between not conscious living and being aware of what is going on and actually feeling things.
After the test showed why I couldn’t make growth hormone and glutathione, we decided to start with Growth Hormone injections and later in the week ‘Energy’ injections. I put ‘Energy’ between quotes because the name doesn’t cover the work it does. It does everything BUT giving me energy.

W. my beloved mate, has been so brave to give me the injections, a guy who turns his head away as soon as there are needles shown on tv. I owe him big time! The Growth Hormone injections are easy peasy with a pen, the ‘energy’ injections need to be assimilated in a syringe and given with a ‘real’ needle every other day. They hurt like hell, but I will not tell him or show him because I don’t want him to be afraid of hurting me. It has to be done so I’ll just grind my teeth, take deep breaths and play ‘mind over matter’.

A few days into it and I started to have numb finger tips. I didn't think too much of it because I had numb soles of my feet for a while and we thought they were MS symptoms which we never really followed up on.

Than a few days later I started to get inflamed joints, and Carpal Tunnel Syndrome pains, by now my whole under arms and hands are numb, first right and now also left. Did some research(of course) and found that people with HIV and treated with also growth hormone before they start treatment also complained about the same side effects as I have. We need Growth Hormone to enhance the production of natural killer cells to fight of the infections.

Scary part is that these symptoms do not go always once you stop the injections. Your bones and muscles grow thanks to the growth hormone and thus leave less room for nerves and they get compressed. Jay, now I found a logical explanation and I start to wonder why my physician didn't warn me for this???

Seems not everyone who takes growth hormones has the same side effects, some people go up a ring size and a shoe size. That explains the 'growing pains'. Another side effect seems to be that people who took growth hormones developed Leukemia. Scary!

The ‘energy’ injections are Glutathione, B12, B6 and Folinic acid. Normally one would say that B12 and 6 should give energy, not so in my body. I’m detoxing heavily. I’m drinking as much as possible and hope to keep detox damage at bay.

Right now, typing with numb fingers is difficult if not painful. Imagine coming from the dentist with your jaw numb, but than in your underarms and hands... Got the picture?
I emailed dr. V. hope he has some really good ideas about this, at the moment my itty little bit quality of life that I had is going rapidly downwards. I need _someone_ to save me.

The image above is from my talented mac colleague Vlad. Vlad makes wonderful images, the low resolution versions are free for you to download for your desktop/wall paper. Please pay him a visit at Vlad's Studio's

# # #

A piece of the puzzle

2008-10-31T00:32:00.000-07:00

The photo hasn’t anything to do with the topic, or maybe a little. I notice the beautiful fall colors outside again and that’s a major improvement of the last weeks. The piece of the puzzle that we, that is dr. Vosloo and I found was that tests showed that I had a double chromosome that makes an enzyme that is responsible for breaking down neurotransmitters like dopamine, epinephrine and norepinephrine, plus that I have a gene that makes that toxic accumulation in my body doesn’t get cleared and that explains my adverse reactions to drugs. And why I act so differently and strong to certain medications and supplements

The progesterone that I was taking made me severely depressed and cycling through severe moods. I was up with my thyroid medication to 5.0 mg and after a few days I started to have tachycardia, very rapid heart beats/fluttering up to 160 beats a minute with a low blood pressure. This is a very scary feeling because I know it can cause a cardiac arrest and there’s not much that you can do except wait it out and hope it will slow down. I try meditation and breathing techniques to stay calm and not freak out. I’m used to slow and irregular heart beats but these tachycardia were not good. W. insisted I go to ER but I know if I go to ER they will keep me in the hospital because of all my other symptoms and I will not make it home again.

Luckily it slowed down towards the morning and I was able to get some sleep. Next day I quit the Thyroid meds and gave my system some rest. After stopping the progesterone and the Thyroid meds I felt instantly better, mentally that is. No more crazy mood swings and dark suicidal thoughts, no more waking up crying with that extreme feeling of sadness.

Not that it’s all happy go lucky now, I’m still extremely sad about not being able to go out and have normal social contacts, do a course, go swimming or just out for a coffee with a girlfriend. But I can see the beautiful things again outside my window, my view on the outside world.

I did go out last Sunday, we went for a walk, or W. walked and I rode in my scooter to a beautiful park. The weather was gorgeous, our dog Lotte enjoyed being outdoors as well, she sat on my scooter on the way back, she’s 13 years old and gets tired easily ;-)
By Tuesday I was ill again, shivering with fever and chest pains, problems breathing and wouldn’t you know it, Pneumonia.

Dr.V. told me to use Colloidal Silver in my nebulizer because I can’t use antibiotics, that would wake up and start the kill off of the other nasty viruses in my body and it’s not ready for that yet. I have been using the nebulizer now for a few days and already feel the difference. I can breathe more easily, no chest pains and my thinking is a bit clearer plus the fever is gone.
It’s really a miracle substance this Colloidal Silver
If you ever decide to give it a try make sure you have the purest form that makes all the difference, otherwise you pay for a bottle that is not effective at all. I think that 'Sovereign Silver' is the best brand out there. They're not scared to publish their comparisons and have a really nice informative website. I buy my Colloidal SIlver at iherb.com though because they are way cheaper.

Sovereign Silver: http://www.natural-immunogenics.com
For supplements etc. http://www.iherb.com

# # #

Where's the fun?

2008-10-13T12:39:00.000-07:00

When I started this blog I wanted to use it to poke fun at myself, my illness, a way to reflect on a life that is getting increasingly harder for me to live. It’s a mere existence than living. I do no longer have the feeling of contributing something useful to the world or at home for that matter. I used to get compliments or thank you’s for the small or big things I did even it was just as small as cooking a meal. Nowadays I have to ask for them, how pathetic is that. I do it but at the same time I know it will make me feel inadequate. I always thought it was normal to give each other compliments or thank someone for doing something for each other, it makes the other person feel good and loved. Me having to ask for a compliment or a thank you, what does that mean? Does it mean I’m not worthy of getting compliments or thank you’s or is it that what I do so insignificant that it doesn’t deserve or generate a compliment or thank you?

I wish I could do more, do BIG things, make a difference in someone’s life, have brilliant career, have interesting things to tell in the evening after the day comes to an end, but I don’t, I can’t. I can do small things, like cook a meal, have a cup of tea ready when my husband comes home and I expect the same recognition for that as if I did a BIG thing. I guess that’s were the discrepancy lies. Other people don’t recognize it as a major effort on my part. They don’t know that by doing that small thing for them I have given up the total energy I had available for that day and won’t be able to do anything else. Like writing my blog because I’m zapped of life’s juice.

It’s not that I didn’t mention this to them, it’s that they take something like having dinner at night for granted, it’s business as usual to them while for me it’s a major accomplishment. It has not always been this way, I used to get acknowledged for the little, small things I did, but somewhere down the road it has stopped and with that, a little bit of my self worth. I have been hurt by these little things more than I can tell, it makes me feel so inadequate and worthless. My soul and spirit is longing for that small acknowledgement of usefulness, than I make the mistake by asking for it. Which only makes it worse because I know it’s not freely given and meant but asked for and received on command.

When does a life stops being worth living? This life what I live is increasingly sad, full of grief, frustration, anger, pain, pain and pain and nowhere to escape to. I hate it when people tell me to look at the things that I still CAN do, yes I can still read a newspaper in parts, not that I remember a word what I have read 2 hours after that, yes I can still write my blog, email friends, pet my cats and every once in a while I go out to a place to drink coffee or to a shop.
Is that fulfilling, is that feeding my soul, makes my spirit soar? NO, I crave human contact, a good conversation, a giggle with a girlfriend, a gossip, a shoulder to cry on, a comforting hug, the fun of doing something together, creating, baking, cooking, a phone call just because I was thinking of you. An in depth contact, people my soul connects with. I miss working with people who are like minded, people I don’t have to explain why or what I mean or do, I miss interaction the sparring between friends, the jokes, the laughter, the crying. I’m lonely. Life passes me by, I try to connect with people online as much as possible, I try to help people online as much as I can even though my hands might hurt typing and I make a 100 errors a minute typing I don’t mind if it will make a difference in that person’s life.

But it still makes me feel like a hermit, something society has spit out. It hurts more than anything, it’s no the life I envisioned years ago. Even when I was ill than it didn’t cross my mind that I would become so depended on one person, that I wouldn’t be able to leave my house if that person wasn’t around, I didn’t foresee that I wouldn’t be able to shower by myself, that I would need help putting on my shoes or getting dressed. I always thought I would get a bit better, that my quality of life would improve but it hasn’t.
I never would have thought that I wouldn’t be able to walk around in my neighborhood, or through the park, that I wouldn’t be able to take public transport to get somewhere, that I can’t make a dr’s appointment and go on my own. I never imagined that if I needed something from the store I had to wait for weeks before I was able to get someone to get it for me and not run out to the store to get a roll of tape myself.

Me, the independent feminist, that girl who proudly burned her bra on the barricades in Paris, who took care of herself since she was a little girl, she who has a deep understanding of the universe and who can read people easily, that woman who is a highly sensitive person(HSP) an introvert but still craves human contact. That girl who was so assertive before it even was in fashion for women to be assertive, that girl who could do anything a boy could do. The girl who people loved to be around who everyone was always happy to see, who could dance night after night after night and never got tired of it, who loved to sing, to make music, who was a promising painter.....
That girl.. that woman... who is now depended on another person for her daily needs, where did she go to? I miss her so much, I crave for a little piece of the life that she had.

This life I have now is nothing but an empty shell of what it was before, my life was full, FUN, meaningful and active, filled with people who cared for each other and the world they lived in. If this is all there is for me and if it’s not getting any better I will have to find a way to make it more fulfilling, I will have to find things I can do to make myself feel useful. If not I’m afraid I will come to the conclusion that with all the pain it is not worth living.
Not only has this disease that’s called M.E/CFIDS taken my physical life, it also threatens to invade my mental and spiritual life.

I can not let that happen.

# # #

More bad news

2008-10-07T12:25:00.000-07:00

Just received an email from dr. V(finally, a reply to my email of 3 weeks ago!) that he received more test results from the 21 vials stuff.

The test is C4A level, a specific immune component and it is very high at 34,815 (Normal range is 0-2830).
So it shows my immune system is very active and this contributes to your symptoms.

I understand that part but WHY is my immune system so active? Is it because of the high Viral and Bacterial load?

What worries me is that dr.V says that it does not require immediate action. I wonder where he bases that on. Those figures to me look extremely high. I had nothing to compare my levels with, most studies have been done for Lyme disease and that doesn't generate such high levels.

I came across a poster session that has been done by dr.Shoemaker where he treats CFS patients with high amount of C4A with low doses of a drug called EPO or erythropoietin.
A poster session at a clinical meeting is for attendees who have information they want to share but whose data either were not submitted at all or else may not have been accepted as a clinical paper for presentation. You gather your data and put it on a large sheet of poster board and then exhibit it for a set period of time while other attendees mill around, hopefully reading your poster, all the while you stand there ready to answer questions.

<quote>
Erythropoietin (EPO) its function is a blood volume enhancer, is apparently also very effective at reducing C4a levels in inflammatory diseases. This lead to Dr. Shoemaker giving 60 CFS patients 8000 units of EPO five times over 15 days and then measuring their C4a and symptom levels.

The results had an interesting dichotomy; while the C4a levels in all the patients dropped, about 80% of the patients symptomatically improved while 20% did not. It turns out that the 20% who did not improve had exceptionally high C4a levels. Normal C4a levels are below 2830 ng/ml.

The responders dropped their C4a levels from 8300 to near normal, about 3200 ng/ml.

The non-responders initial levels were so high, about 19,500 ng/ml that even substantial improvement still left them with higher levels than the responders had at baseline (12,500 ng/ml). In short, it appeared that their C4a levels were too high for the EPO to give them relief at the dosage given.

<end quote>

So their levels about 19,500 are considered extremely high, compare my levels of 34,815 they must be enormous than.

What I did read, according to wiki is that C4a is a human gene part of the Complement component 4A. The Complement system is part of the larger immune system that is not adaptable and does not change over the course of an individual's lifetime; as such it belongs to the innate immune system. However, it can be recruited and brought into action by the adaptive immune system.

C4a is a Anaphylatoxin. Anaphylatoxin is able to trigger degranulation of (release of substances from) mast cells or basophils, which is an important part of the immune system in all kinds of inflammation and especially as part of defense against parasites. If the degranulation is too strong, it can cause allergic reactions.

I guess you can say that in my case degranulation is too strong.

Anyway, my body is so much depleted at the moment we need to get it into shape first before I can start treatment for the viral stuff.

For once, for one g*ddammned time I wished I got some medication of whatever that would make me feel a tiny tiny bit better. Just a small lift in my pain or exhaustion would be nice.

I’m sorry to say that I’m really really am getting depressed about it all and have a very negative feelings while I should think happy positive thoughts to encourage my healing.

I’ve got nothing left to pull it from.

# # #

Wishing and hoping

2008-10-06T11:27:00.000-07:00

Dr. V. and I made a basic plan to at least get my immune system in good condition. Apparently my ‘reverse’ T3 thyroid isn’t good and that’s why my Thyroid isn’t functioning either. I told him my experiences with taking Thyroid meds even though they were compounded for me, they gave me chest pains, irregular heart beats and even more Orthostatic Intolerance problems. I even tried to open the capsules and divide them up in 3 and fill new capsules but that also gave me the same side effects so I stopped taking them. The pharmacist told me that if I developed cardiac problems I should stop taking them and that’s what I did, against the wishes of my GP. In fact he was angry with me.

These dr’s do not understand that the function of my heart is not something I am prepared to mess with. It’s the motor of my body, if that stops working it’s over, surely they teach them that it med school?

But dr. V told me I was precribed the wrong thyroid meds, it should have been for my reverse T3 and it wasn’t.
We agreed to start at 2.5 mg and work up to 10 mg a day. At this moment I’m at 5.0 mg. It still gives me irregular heart beat, no chest pains at this time. I’m willing to se if it improves when my body is used to it more.

My medication at the moment looks like this:

5.0 mg of TRIIODO-L-Thyronine in the morning, can’t eat for 1 hour.

1/4 or 5 mg DHEA (need to build up to 1 tab of 5mg)

with breakfast:
20 mg Hydrocortisone
10 mg Loratedine
300 mg Aplha Lipoic Acid
4000 FU Nattokinase
80,000 units Serrapeptase
6 tabs Wobenzym
500 mg Quercetin
500 mg Bromelian
5000 UI Vit. D3
6 grams Vit.C
1 caps Probiotcs
4000 mg Super EPA
100 mg Ubiquinol
2 tabs Padma Basics

Before midday rest:
20 mg Hydrocortisone
4000 FU Nattokinase
80,000 units Serrapeptase
1/4 of 5 mg DHEA
30 mg Morphine Sulfate
0.5 mg Alprazolam

before dinner:
20 mg Hydrocortisone
300 mg Aplha Lipoic Acid
4000 FU Nattokinase
80,000 units Serrapeptase
6 tabs Wobenzym
500 mg Quercetin
500 mg Bromelian
5000 UI Vit. D3
6 grams Vit.C
4000 mg Super EPA
100 mg Ubiquinol
2 tabs Padma Basics

Before sleep:
75 mg Pregnenolone(need to build up to 200 mg)
10 mg Progesterone
30 mg Morphine Sulfate
1 mg Alprazolam

All this info is probably totally uninteresting for non-ME/CFIDS people, but for those who do have this rotten illness know how important it is for me to write this down so we can compare notes.

I need to see another physician to get my HGH(growth hormone) injections prescribed. It’s expensive so we’re hoping my insurance will cover it. My growth hormone was very low, it was in the 80’s and it should be in a normal range of 200-350.

Hmm... somehow I remember that someone I knew in the Netherlands lost a bunch of weight with HGH injections. That would be a nice side effect ;-)

I just wish there was something that for a minute would take away my pain, it’s driving me insane. I’m trying all kinds of tactics like zen meditation, visualization, Kabala pain technique, spa, massage, low current massage, heat, cold, nothing helps.

Next on my list is Marijuana, I’m so lucky to live in Oregon where medical Marijuana is free. They even help you find a dr. to get you a card so you can start using it. Since I don’t smoke, a nebulizer would be great. Will have to check that out.

# # #

When it rains it pours.

2008-09-23T14:19:00.000-07:00

Unfortunately today did not bring the good news I was hoping for.

The results of my 21 vials of blood were in and they didn’t sound good.

I tested positive for a large amount of bacterial and viral infections.

To name a few:
Cytomegalovirus - highly positive
Myoplasma Pneumonia - positive
Human Herpes Virus 6(HHV-6) - highly positive
Chlamydophila Pneumoniae IGG - very high positive
Chlamydophila Pneumoniae IGA - high positive
Epstein Barr Virus (EBV) the highest positive amount I ever had. Normal range is 1:10 mine is 1:11000!
Candida Albicans AB positive
Besides all this I also had a positive for Lyme.

One small positive was that I had some natural killer cells active, which means they are trying to fight the infections.

My white blood cell count was high as were my RDW’s. My Tromboplastin time was high but that has always been the case.

Cardio CRP was 20.7 were the normal range is <1.0 low cardiovascular risk, >10.0 persistent elevations represent non-cardiovascular inflammation. I guess we can safely say that I have a non-cardiovascular inflammation.

DHEA was not measurable. Normal range is 15-170, mine was <15.

Surprisingly my B12 was high 2000 where the normal upper range is 1100. I guess all those nebulized B12 paid off ;-)

Coagulation test was high at >4.0 H where ref.range should be below 4.0

Fibrogen was 576 H with a ref range of 175-425

IGF-I was low at 88 L with ref range of 92-190

Serotonin was too low but that’s nothing new and there’s now easy way of fixing it as I have serotonin syndrome.

Cortisol was low at <1.0 L. Normal peak should be around 20.6

The viral and bacteria infections scare me to death, I know what treatment lies ahead of me and I wonder if I will be able to survive it.
I know the kill off from the nasty buggers will release a large amount of toxins that will make you really really ill. i might have to look for a doctor with experience in treating multiple life-phase infectious agents.

Now I have to lie down, I came home vomiting after my IV and my heart is racing like it’s participating in Formula One, feel horrible instead of better and will do extensive research on what the heck they put in their cocktails that makes me so ill.

I have the gut feeling there will be a cancelation of my precious vacation.

# # #

What will tomorrow bring?

2008-09-22T14:19:00.000-07:00

This week has been a rotten week, leading up to my birthday and our planned long weekend vacation to finally get some relaxation and change of scenery. We had to cancel our vacation for 2 years in a row due to medical issues, both times it was W. who had the medical problems not me ;-) So I so hope that this year we will be able to have a short vacation. I booked the hotel and made arrangements for a cat sitter to come by and feed the kitties. Keeping my fingers crossed that tomorrow at my new appointment with dr. V all goes well and that I won’t get ill again from the IV.

My nights have been horrible, the pain is too much to bare and when the day comes I often wonder how I’m going to make it through the day. I dread going to bed at night because I know I have to go through the same torture again.

When W. takes me out shopping and we drink a coffee on a terrace I often look at the ‘normal’ people. How different their lives are, how much they take leading a normal life for granted. Putting on a coat by yourself, taking your keys and going out the door to a run to the supermarket are boring normal chores to them. I would give everything to be able to lead a normal boring life like that and not have my days consists out of health and medical issues. From the early morning to deep into the night my times is filled with doing research, writing and comparing notes with others online, discussing treatments etc.

It shouldn’t be necessary, wouldn’t it be great to be able to go to a doctor and say this is wrong with me, it hurts here and he says 'oh I know how to fix that!'. Up till now I always had to do the research while my brain is already fried, there are just too few doctors who are educated and have the knowledge to deal with the complexity of this illness. And I guess it’s not a popular field to be working in, not much money is to be made from us, there are not easy fixes just ongoing trial and error protocols.

I hope that one day I will be able to trust a doctor completely to have the knowledge to treat my illness, up till now I have only come across physicians with limited time and who become impatient if I do not react to a medication like they think I should or a totally other class physician is the one that fakes the knowledge, not knowing I’m fairly educated about my illness and know and read the latest research daily.
Those who fake the knowledge are the worsted, it’s such a disappointment if you can’t have a professional relationship with a physician, someone who you need to have on you medical team to manage your health.

I have had physicians call me a ‘train wreck’, call me ‘too much to handle’, and ‘too complex with too many symptoms’. Makes you wonder why they became physicians in the first place, if they wanted an easy job they should have applied at McDonalds to flip burgers.

# # #

The darkest hour is just before dawn....

2008-09-16T14:25:00.000-07:00

Isn’t that the truth?
I know from experience, lying awake the whole fscking night, not being able to find a spot that does not generate heaps of pain and seeing the hands of the clock turn from midnight to dawn. Right when my despair is the deepest, light starts seeping through the blinds again. Funnily enough that’s not a comforting sight though. It means I have to face another rotten day, exhausted from pain, exhausted from grieving for a meaningful productive life lost, exhausted because all the joy has gone from my life. This is the hour that I often ask myself what’s the use of holding on, to keep on trying. It’s the hour that is the most dangerous, the loneliest hour I have ever experienced. The hour that you realize that in the end you are alone, it’s just you and you will have to comfort yourself or else you will give up and end it all, because all the years of relentless-never-ending pain, physical and mentally is getting to be much much more than you can take.

I know that if I can get past this hour I will pull the shattered pieces of my life together and will try to make it through another day.
Sometimes when earlier in the night my Morphine kicks in and I am able to fall a blissful short sleep, I wake up crying, tears dripping from my eyes, my pillow wet from tears because of the pain. My hip, shoulder, knee, feet every part of my body that touches my mattress is hurting so much, that I rather give natural birth to 10 babies than to face this much pain ever again. My husband, already used to my crying at night, absently half asleep reaches over to stroke my back trying to comfort me. I carefully sit up, taking care not to move too much because I will get dizzy and my orthostatic intolerance also works in bed and I will black out hen turning to another side. I try all relaxation techniques that I know of to fall asleep again, sometimes that works until I wake up again this time biting my pillow not to scream in pain and wake up hubby who needs his sleep because he has a difficult stressful job the next day. I get up, shuffle about, to the bathroom, clean my face and look at the person in the mirror with the haunted eyes and the black circles under her once sparkling blue eyes. She somehow looks familiar, like vague copy of someone I once knew. Who is she and what is she still doing here night after night after night. The soles of my feet are killing me, it is like walking on broken glass, when I finally reach my bed again I ponder on which side to lie on now. Can’t lie on my back because a disc in my lower back is pushing on some nerves that send jabs of burning pain down the back of my legs and so we start again on a side and maybe sleep for a hour until the pain is too much to bare again. I’ve tried to read but my vision is too blurred from exhaustion and my body needs sleep, if only the pain was gone or even less. I try to remember a night that I was able to sleep without waking up from pain, I can’t. Maybe 20 or so years ago when I still had a life, I can’t remember what it feels like to sleep for more than 2 or 3 hours in a row or waking up refreshed.
No-one knows where the pain comes from and even my morphine tablets do not touch the pain, they make me sleepy and make me fall asleep when the pain is still on a conscious level. Once it has reached my sub-conscious level in my sleep, I will notice it in my dreams as well.

Worsted aspect of dealing with so much pain night after night is that my spirit is depleted, my soul is dark and grieving, it’s like that part of my life has already left me and only my physical shell is still here. I noticed it more after my beloved doggy girlfriend died, she gave me a reason to get up in the morning, even though she had cancer she still wanted to be with me and go out. But in the end I saw her feeling like I feel right now. She wanted to be left alone and the pain that radiated from her eyes made me cry, still she didn’t want to leave me. She knew I needed her like she needed me. Now she’s gone, she’s free of pain, lucky girl.

I wonder if doctors know how our nights look like when the talk to us about your sleep habits. Go to bed at 10:00 PM they say. Your body needs to make cortisol between 10:00 PM and 2:00 PM they say, no coffee after 6:00 PM, no TV in your bedroom. Do they know about the monster of pain that haunts our nights? That by going to bed at 10:00 PM you’re inviting the monster to come over earlier so he can torture you even more? Have they ever been visited by the monster themselves? Do they know about the darkest hour before dawn? Maybe they should, maybe that would create more compassionate doctors, because that’s something we do not have enough of in our lives. Compassionate people, wether it be friends, children, spouses, family or doctors are much much needed. A day with a compassionate caring word, a hug, a cup of tea in bed, a pet on the arm or just a caring ‘is there anything I can do to make you feel better?’ is a better day and who knows maybe even a better night.

My First IV!

2008-09-09T23:53:00.000-07:00

Well, no I did not feel miraculously energetic and so much better as they other ladies who were there also getting an IV claimed to be. Don’t know what is wrong with me but I obviously do not fit the picture. I was excited about the prospect of feeling better and was looking forward to this IV business.

The IV took 4 hours, I arrived at 9:00 and after taking my vitals, (which is always funny) they got the IV started after a few tries.
it’s funny because I have a set of extra cervical ribs in my neck, they push down my arteries and nerves and often is very painful. Because the squeeze my arteries i do not have a pule on either side of my arms. Nurses always seem to think I’m joking and just go ahead looking for a pulse but have to give up sooner or later. Even in my neck it’s difficult to find.

Halfway trough the I felt a horrible nasty headache coming up but attributed that to the warm and stuffy medical rooms and the bright TL lights. I’m very light sensitive, bright lights quickly give me a headache. Dr. V. came by a couple of times to check on me to make sure I was doing fine and the IV was not going too fast. It went slowly but steady. They provide you with snacks and drinks if you want to, the women across from me ordered a full lunch and their daughter came over and delivered their salads and sandwiches. By this time I was so nauseous that the smell of their sandwiches made me vomit. Do you have any idea how difficult it is to get up from a chair with an IV in your arm and hurry to the restroom?
I felt flustered and hot and my face was looking bright red, *make note to look up what exactly it is they put in these cocktails, could be something like B vitamins like Niacin because of the flustering. By now I was sweating and it felt like hot flashes in menopause! I just wanted to go home and lay down in my dark room and not move for at least 3 days! I admit it probably can be fun to chat with others about your illness and experience but the chatting and constant yapping and laughing drove me insane! Maybe I just not used to being around so many people anymore, after all I have spend almost 3 years home bound without seeing anyone.

I tried to read some but the letters were swimming on the page and a magazine is difficult to hold with one hand I discovered. W. called he was ready to pick me up but my IV was still going and I told him it would be another hour. He wasn’t happy, he had meetings scheduled and did plan for my IV to have a delay. Messed up his schedule. I felt anxious about that, it’s bad enough he needs to be my chauffeur and now I made him wait too. It’s all becoming so embarrassing and frustrating for me, not being able to do anything by myself.

Finally at 1:00 PM I was done, made a new appointment for over 2 weeks, paid my bill of $125 and shuffled after W. to the car.
I have never been so glad to see my home, usually it feels like I’m going back to prison and being locked up again but this time I was actually happy to be home ;-)

I lied down and than my joints started hurting, my eyes burned, I had muscle spasms, my head had a noise it like it had a whole marching band of trolls practicing in it. I took 2 Morphine tablets in the hope to be able to sleep some and maybe be better when I woke up.
I did sleep but didn’t wake up feeling better. In fact it was the same as the few days last week. I will have to discuss this with dr. V. I think there’s something in the IV that I react badly to. I have 2 weeks to recover before the next IV. ;-)

First visit

2008-09-09T15:37:00.000-07:00

Today was my first visit with the new dr.
I went after much doubt and sleepless nights to the Fibromyalgia and Fatigue Center here in Portland. Why the doubt? Well in the CFS/ME message boards and mailing lists they do not get good reviews and people do not think highly of physicians who promise to cure you within 4 months or that you will see a 85% improvement in those 4 months. They were called charlatans, out to make a quick buck and a lot of other not so flattering names. Granted some of the complaints were legit, they do want you to use their supplements but I see that no different than modern western physicians who are being pushed my pharmaceutical companies to promote their medications. Lyrica anyone?

I decided to go anyway, my insurance will cover out-of-network charges I hope and the rest will be up to me. I will buy my own supplements.
I will take away from it what will be useful to me and ignore the rest. Main reason for changing my mind about the FFC clinic was also that they hired a new physician, a naturopath dr. V. I wanted to see him as they always have a better view of what goes on in a human body than ‘regular’ physician I think who only look at a symptom and how to get rid of it.

Dr.V was all I hoped him to be an more. We had an excellent conversation, he wasn’t put off by my long list of symptoms and he is from South Africa, which gives us a bond, we’re both immigrants and we actually can understand but not speak each others language. ;-)
We only talked about my history and how to start with the very basics and to creat a good foundation, pending my blood tests results.
I will go for an ‘nutritional and gluthatione’ IV coming Thursday. I had a little twinkle of hope when I left his office after a visit of 1 and a half hour.

I did have my blood test right away and I warned them for my low blood volume and ‘sticky blood’ which always results in 1 or 2 vials of very slow dropping in blood. After trying 4 times he finally hit a artery that was willing to give some blood and instead of the 10 vials dr. V ordered(they normally do 37) he even took 21. he was happy he managed to get so much and I was caught up in the moment. I should have protested at 10 but I ‘forgot’ how I feel after only giving 1 or 2 vials.

I barely made it home and have been so ill for the past 24 hours as I have never been. My whole body hurts and I can barely crawl to the bathroom to get a drink or pee. I’m angry with myself for letting my guards down, I should have stood up for myself and told them to stop because I was going to be ill. My body can take only so much abuse. Having low blood volume means your heart has to work even harder to pump the little blood available around and it can’t reach my brain in time and the results are fainting again.

I will tell them coming Thursday and it will NOT happen again. We’ll see how the IV goes on Thursday, will I feel miraculously energetic and happy again?

Invictus

2008-09-08T14:40:00.000-07:00

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Take 2

2008-09-07T15:15:00.000-07:00

As you probably will have noticed the protocol I was about to embark on in February has not been an overwhelming success.
In the past few months I have gone through some very traumatic times and still am grieving very much.
The dog I mentioned in my earlier post, my therapy dog, my friend and confident, my sole reason for getting out off bed in the morning was diagnosed shortly after my last entry with Lymphoma cancer.
Her treatment consisted out of keeping her as comfortable and happy as possible because she already was in an advanced stage. Although I cared for her with all my love and it wasn’t any trouble at all it took all the energy I had and I was too exhausted to take good care of myself. I tried very hard to keep her alive and with me but she died on May 8th. I was the hardest thing I ever had to do and that I have ever experienced.

Pets unlike humans will give you unconditional love, no matter what you look like or how ill you are or how much you can or can not do.
She often was my sole comforter, I cried billions of buckets of tears in her fur during her 13 years with me. Shortly after she came to me as a puppy I became so ill that I had to stop working and together we went through a lot. She was always waiting for me when I came home form yet another useless dr’s visit, in tears and disappointed, her tail wagging and so happy to see me. I would make a cuppa tea and we would sit in the yard throwing a ball or frisbee and the world would seem okay for a while again. She kept me grounded and alive.
Now that she’s gone I feel lost, alone and no reason to get up anymore, there are no words enough to tell you how much I miss her. Everything that was wrong in my life she made right, now that she’s gone the things that were wrong present themselves with a raw reality and I have to face them alone, without her her comforting me.

When she was dying I promised her during our many human/dog conversations that I would do all that was in my power to get better, to improve my quality of life. She was holding on to life with all that she could because she didn’t want to leave me, I think she knew how much I needed and depended on her. I promised her and told her it was okay to let go that I would be alright and I would take care of myself.
And than she was gone.....
And I woke up the next day in tears, not knowing HOW on earth I had to take care of myself when there was absolutely no reason at all anymore to go on.

It has taken me almost 5 months to get the courage to see another physician and to give it another try. I’m still full of doubt, I don’t know why I keep trying, afraid to be disappointed again and also fully aware of the fact that this is probably going to be my last attempt to try yet another miracle cure. I’m so tired of all the miracle cures, to start over again and again and again..... But the alternative is giving up and I promised her I wouldn’t do that. So this is for you sweet face, I’m keeping my promise!

Friday - Februari 22

2008-02-22T22:03:00.000-08:00

I thought it might be fun to give you little insight how my day looks like.

After getting up 7 times during the night because had to go pee, at --
7:30 am - startle awake, think it's 11:00 or so only to see it's 7:30 turn around slowly because of orthostatic intolerance and do not want to get dizzy while lying down.
8:00 am - wake up again because arm is tingling, try to go back to sleep
9:30 am - wake up again decide to get up. Slowly stretch limps to see if all is working. No - arms don't work. Wait till two fingers don't feel dead anymore than pick up other arm and move a bit. Feels like it could fall off any minute. Look at clock ---
9:50 am by now. Sit up see the room spin like you have the most horrible hangover ever. With all will power you have make the room stop. Pfew.... try to get vertical, hit the floor on your knees immediately because soles of feet give you unbearable pain. While on the ground have a serious conversation with the dog about the state of her crate. Try to get up and stumble to the bathroom. Get a glimpse at the clock, darned....
10:10 am - stumble through the bedroom, hit hip against sharp edge of stupid stupid stupid chest with drawers, who the hell put it there? Go to the bathroom, do usual business glad to be sitting down again for a moment. Ponder if should stay there for a while and just sit. No, better get going. Throw on bathrobe try NOT to look in the mirrow and stumble back to the bedroom. Let dog out of her crate, carefully turn around and walk to the hallway. Look at the alarm clock.
10:30 am - on way through the hallway hit other hip on the washer..... GRRRRRR who put it there anyway, what a horrible place for a washer. Round the corner, fall over the dog who lies down there and because the blinds are closed you didn't see her and she didn't hear you because she turned deaf. Clucth the dog and cry in her fur about the unfairness of it all. Finally arrive in the kitchen.
10:40 am - Greet the catz who are happy to see you but even more happy to see their breakfast. Put food in microwave for cat 1, put tuna in bowl for cat 2., give defrost turkey to cat 1 both happily snacking away. Wow, you are in awe of yourself, that went pretty well.
10:50 am - take Thyroid medication plus Ubiquinol + Hydrocortisone + Flavinox+ Loartedine+ Shark Oil. Drink lots of water because capsule is stuck in throat. Put the kettle on for cuppa tea. Because of the Thyroid meds you're not allowed to eat for 1 hour but it doesn't say anything about drinking.
11:00 am make tea, walk carefully back to hallway and office. Put tea down and suddenly remember that you forgot to let the dogs out. *sigh* have to walk back and wait till they have done their business.
11:10 am - Pfewwwwwww sit down and sip some tea and cry in frustration because you're already exhausted and have no clue how to get through the rest of the day.
11:15 am Check on email maybe something fun and nice has arrived. Hmm.. no, spam, spam, friends who are also sick and in a flare, depressing medical research news. Maybe do some online retail therapy later to balance everything out and support the US economy. ;-)
Noon - It's time to get up and wash up and put on some clothes, it's a no-shower-day today. Can only shower 3 times a week because it's too exhausting. Try to get up and realize legs don't work properly. Do some stretching and walk step by step to bathroom.
12:30 PM - shoot.... forgot the washing thingies, have to go back to the linen closet. mentally curse myself for being such a fog head, does not help....
12:35 pm - finally start washing body parts, sit down to rest and do the other half. Brush teeth, do nose rinse, look in mirror, pat down hair. Put on deo and moisturizer, otherwise skin will feel like its about to crack. Can't breath, nose airway is blocked again, bend over to pick up towel and feel the lights go out. Come to it and check to see if I broke anything, no don't think so. Look for a something to hold onto to get up. Decide not to use the sink, might come down. Shuffle out of the bathroom and use the bed to get vertical again. While there lie down on bed to recover from fainting again and hope heart will return to normal function. Look at alarm clock dammit......
1:15 pm - Finally managed to get on some sweats and a shirt. Stumble back to kitchen to make toast and coffee and get all the stuff for the nebulizer. First do nebulizer stuff, messure with dropper, 1 dropper of Gluthanione and 4 with water. Sit down, get a magazine and turn on nebulizer, breath slowly, try to remove cat from magazine, breath slowly and read 2 words, remove cat from magazine again. Forget to breath out and cough, not good. Give up on magazine and get a catalog look at pictures while doing nebulizer. Done...
1:25 pm get toast, put on some butter, take medication that have to be taken with 'breakfast' . Turn on espresso machine, get cane and walk carefully outside to the mailbox to get newspaper.
1:30 pm sit in backyard with coffee, 'breakfast' and newspaper and cry some more because of now double exhaustion and constant dizziness. Throw frisbee for dog until newspaper is read and coffee is gone. Tell the dog to go pee and go back inside, frozen and exhausted and in, pain, pain, pain.
2:05 pm - while walking past the litter box see that it needs to be cleaned. Pick up plastic bag and sit down on the floor of the sunroom because nearly passed out again. Fsck Fsck Fsck...... I HATE this illness.
2:15 pm - scoop our cat waste and thank wonderful company that makes purrrrfect cat litter.
2:30 pm - after putting all stuff away look at the clock and realize that there will be no time to work on blog now because it's time for nap. Put the dog in her crate with a biscuit, give the catz some treats and crawl into bed. Oh God that feels good..... am exhausted. Take medication and hope for a few hours uninterrupted sleep. Wonder when suppose to eat lunch and will I be able to get up to make dinner. Feel like failure and have pity with self. Turn on positive thoughts of love and being kind to self.
3:00 pm - sleep..........

Luctor et Emergo

2008-02-21T15:14:00.000-08:00

'I Struggle and Emerge' -- it's my blog title. If you have read the first post below you will know that I'm struggling and I keep on struggling but I _do_ hope to emerge someday. I was tempted to delete the posting and start fresh but just decided to leave it, maybe someone will recognize the feelings and it will let them know they're not alone in this.

Well something had to give, I couldn't continue to carry on like this any longer. I picked up a book written by a Biochemist Scientist, dr.Martin Pall - 'Explaining 'Unexplained Illnesses'.
It was a difficult read, dr. Pall is a Bio-Chemicus and not a medical dr. so he looks at illness at cell level and not as medical dr's do at blood level. Luckily I have my own scientist at home, although not a bio-chemist W. knows how to read scientific material even if he's not familiar with the content. So he read the difficult parts for me and explained what I couldn't grasp through my brain-fog.

In the book dr.Pall describes his research and his theory which he calls the 'NO/ONOO- cycle' To explain his theory in short:
dr. Pall believes all 'Unexplained Illnesses" ( Fibromyalgia, CFS, Multiple Chemical Sensitivity, Post Traumatic Stress Syndrom, Gulf War Syndrome etc.) are Initiated by Short Term Stressors.

For Chronic fatigue syndrome/Myalgic Encephalomyelitis this can be:
Viral infections, bacterial infections, physical trauma, severe psychological stress, carbon monoxide exposure, organophosphorus pesticide exposure, ciguatoxin exposure, toxoplasmosis (protozoan) infection.

He believes that these short-term stressors initiate a single complex biochemical cycle which elevates levels of potent oxidants in the body - the nitric oxide/peroxynitrite cycle (NO/ONOO- cycle) - and is responsible for causing CFS, FM, MCS, PTSD, and other chronic diseases.

He believes that this cycle need to be down regulated in order to be able to recover or improve.

Dr.Pall, a CFS patient himself, worked 8 years on this research. Together with dr. Grace Ziem, MD, specialist in MCS(Multiple Chemical Sensitivity), he developed a protocol that seems to help a lot of patients.

I was anxious after reading all the materials to start the protocol as well, until now nothing else seems to help, no pharmaceutical medications helped me get well, only treated one symptom until the next one appeared.

To me it all made sense.
I discussed the theory with my PCP and got tested before we started the protocol so we can keep track of various levels of deficiency and if would need something else besides what the protocol prescribes.
Ordering the compounded materials did take some time, we had to work out some kinks. Kudos go to my partner in crime W. who did all the calculations and explanations to our PCP. More kudos also to my PCP dr.Miller who was so open minded to work with me on this even though he was not familiar with the material and protocol. He didn't hesitate though to give his full support.

I received all medications, supplements and hardware ;-) to start going and thought it would be a good plan to document my process in this blog as I go along. Maybe it will help someone and it's good for me to keep track, vent my frustration, whine and celebrate every victory as I'm determined to EMERGE one day!

Will go into more details about the protocol over the next days, don't want to overwhelm you all ;-)

The layers of this illness

2007-10-19T15:32:00.000-07:00

The invisible darkness or how one person can be 2 entities.

In a way you could say I have a multiple personality syndrome(MPV). I know I'm ill now and most of my time is spend indoors, alone. But every now and than I feel good enough to go out, to the park, the city for a coffee, me with my scootmobile, W. walking and we'll just sit there, me soaking up the atmosphere, being amazed by all those people who hastily move around, places to go, things to do. It's than that all of a sudden like a knife piercing my head and heart and out comes pouring the memories and images of a vibrant fun young girl/woman. She has loads of friends and acquaintances, she has fun, laughing, always up for a new adventure, she looks good, stylish yet like no-one else and sophisticated, always up for a new adventure, a picnic, a BBQ, weekends full of joy camping and swimming, singing silly songs at the campfire, building sand castles with her daughter, she is a person of strength, to lean on for all her friends, she is known for her loyalty , she gives and gives and gives. Who is this person? I 'm not her anymore, yet she and I are the same person, it's my alter ego.

I'm sitting there staring at a group of friends having fun, I know what I must look like to them. A middle aged, overweight, bald, handicapped female, driving one of those ridiculous scooters, she walks with a cane but it she really ill or is it just because she fat? She looks healthy enough, maybe she if she lost the weight she wouldn't need that scooter, lazy bitch. I know I look depressed, where is the fun in my life, where did that person I once was disappear to? Where is that girl that drank cocktails on a terrace in the afternoon, who went to football games and drank a beer and went dancing all night long? A wave of overwhelming jealousy washes over me, I _so_ want to be able to join them in their fun but instead I'm locked up in this world called M.E and illness that dehumanizes you. It's sad, no-one knows that woman I used to be anymore, it's like she never existed, like a fantasy that went up in smoke, a Fata Morgana. What's left behind is a weak shell of that vibrant person. Like someone said, this is an illness with layers and layers of grief and loss. If you shed one another appears.