What will tomorrow bring?
Monday, September 22, 2008
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Chronic Fatigue,
M.E,
Pain,
Protocol
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0
comments
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.
# # #
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.
# # #
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