Luctor et Emergo

Well, me writing a post in the second day means there is something to write about. ;-)

Right after I made a comment on FB that I was going to binge watch some old Lauren Bacall movies I was hit with a wave of 'not feeling so good'. I suddenly felt the urge to turn off my iPad, put the fan on high and lie very quiet, with earplugs in in a dark room.

Before I will write about what is going on I will let you in on my daily symptoms so you know it's not something out of the blue.

I have a reversed sleep cycle, meaning I fall asleep at 5 or 6:00 am and wake up at noon. And by falling asleep I literally mean 'falling' asleep. One moment I'm awake and next 'bang' someone turned off my light and I wake up in the same position as that I fell asleep in. Sometimes still wearing glasses and my ipad glaring into my face on the page of the book I was reading. I have an iPad stand next to my bed so I can read without holding it. if you're interested in knowing more about that let me know.

I usually eat some fruit hubby has in the fridge for me like at the moment it is bowls full of cubed ice cold watermelon. That hydrates me and sometimes I go back to sleep more relaxed now until 2:00pm. This is the time that I talk myself out of bed. Unless I'm so horribly ill that all I can so is crawl to the bathroom I demand of myself that I get out of bed even though it's just for a few minutes. It takes about an hour before the feeling that I'm about to die will fade. I'm afraid that if I don't get out of bed I will be in my last stage of ME. I need to get my blood circulation going I have a severe clotting problem. I sit in my wheelchair in my craft room and take my meds, read my email and do what are my responsibilities, paying bills online and shop at Amazon for our monthly delivery.
If I feel okay I might even work on some digital scrapbooking and edit my photos.

Now for my symptoms, everyone is different, my most painful symptom is the inflammation in my spinal cord and the viral stuff that is nibbling just outside my spinal cord. This pain is not even controlled by morphine unfortunately and there will be a time I will need stronger meds. The morphine I get I take in a combo, 1 tablet of Morphine with 1 mg of Alprasolam(Xanax) will put me out, sleep. If the pain is severe I only sleep for half an hour till and hour.
Next up is kidney and adrenal pain. Horrible horrible dull aching pain in the middle of my back. Kidneys and adrenals do not function well and other doctors always told me that adrenals can not hurt, but my current doc was the first to acknowledge that yes they can hurt.
Another pain is a deep down bone pain throughout my lower body which we first thought it had to do with the large lump on my hipbone and were afraid I had bone cancer but the large lump turned out to be bursitis on both hips. Making it impossible at times to find a spot that I can lie comfortable for a moment. When I have a auto-immune reaction, like now, that bone pain travels throughout my body and no bone not even my pinky toe is safe.
Other symptoms are migraines, tachycardia, NCS, which is a family member of POTS but neuro related. It stands for NeuroCardiogenic Syncope. At times when I turnover in bed I pass out. Which always scares the heck out of me because I don't know if I will wake up again.
My what I call minor symptoms are enlarged and painful lymphnodes, rashes(Lyme, mycoplasma, systemic yeast) and whatever virus or bacterial infection is not dormant at that moment in time. They do take turns.

That's enough information for now, maybe even too much.;-)

Late last night my arm where we injected the GCMaf began to hurt, nothing alarming it just hurt to move it. I felt horrible when I woke up this (for me) morning but that is nothing unusual that new or aggravated symptoms show themselves after that hour that I have been awake. I didn't want to think about it too much out of fear of overthinking it and feeling every little thing. But it made itself known this afternoon and while I was laying in the dark I could feel a heat spreading through my bones together with the pain I usually feel during an autoimmune reaction. W.(husband) did a little victory dance, he was happy I had a reaction. I was not so amused. I mean common, even on 0.05ml a reaction? I slowly began to feel more rotten, my ears are firered and feel like when you have a fever only I can't have fevers so this is my way. Slowly all my joints are starting to hurt and get red. My headache reduced itself to a dull ache and now at 11:00 pm I decided to write this while I still feel that I can. Lord knows what tomorrow will bring. Sipping a cup of ginger tea, taking my meds and will be back in bed in a minute.

Patricia asked me if I would do a write up about the genetic make-up that makes you a 'good responder'. I will happily do so when my body wants to cooperate. I can write small blurbs and that piece it together and post it.

Thanks for reading guys and I will write more soon, for now, be well and many blessings.

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