I should really have seen it coming! Why didn't I? The entire month of January, I was so extremely exhausted. No, not what 'normal folks' call exhaustion. This kind is far different. I lived those weeks feeling like a new mom who was woken in the middle of the night and then told to go to work all day, and then come home and cook dinner, and then run the boys to hockey practice, and then run over to watch my daughters volleyball game and then come home at 10 at night and try to take care of the household chores... it felt like all on 2 hours sleep. The saying, I'm so tired I can't see straight. Well that was me! It's true and it happens. I was so exhausted, I literally couldn't walk straight either. I felt as if I'd fall asleep during work. I felt nauseous. Irritable. Crabby! My poor family.
My life was too busy, too full to get sick again. The day I almost collapsed and fainted at work shouldn't have come as a surprise to me. But it did. My husband picked me up, drove me home (I was unable to drive) and I collapsed into bed hoping I'd feel better after some rest. Hours turned into days, days turned into a week. I was unable to sit up without feeling dizzy and faint. The inside of my head/ears felt like it was inflamed and ready to explode. I slept probably 18+ hours a day. Aches/pain, ringing ears, heart palpitations, night sweats, and the crazy rash on my face all back. I was too ill to even take myself to the doctor. I kept telling myself that I had a 'sinus infection.' (After all, I did have pressure in my head/ears, and dizziness, right?) Thinking sleep and and cleaning out my sinuses would eventually help. It didn't. After a week, knowing I couldn't call in sick to work anymore without seeing a doctor, I drug myself into the clinic. I told the doctor I had a sinus infection and needed antibiotics. I left in tears when I was told that I did NOT have a sinus infection and wouldn't be given any meds.
Another week went by with out any change. I had a very hard time admitting what was really going on. Desperate, I drug myself back to the clinic, this time to a different doctor. This doctor would help me, right? I confessed my history, hoping I wouldn't be treated like a crazy person. I begged for help. I prayed something could be found so that I could be treated. I was pleasantly surprised to find a doctor that was willing to listen, and willing to look for answers. She even seemed concerned. She took enough blood to feed an army of vampires and assured me she'd find what was making me so ill. She sent me home with a prescription for 60 mg of prednisone wanting to help me start to feel better right away. I felt a glimmer of hope.
4 days later found me waiting in the doctor's office for the answer to what's been making me ill for so long. Surely something would have shown up in the blood work with how severe my symptoms had been. I was, instead, given the all too familiar computer print out on Chronic Fatigue Syndrome. POP! The balloon of hope I felt, deflated! I felt like I had been slapped in the face. "Really? CFS, you came to that conclusion already! No additional tests? No specialists or more knowledgable doctors to be seen first?" I thought. "What about seeing a Rheumatologist? What about further testing for celiac? What about further testing for Lymes?' I asked. I continued to ask her if she heard the statistic on how many of the blood tests for celiac come back a false negative and that a better way to check was a biopsy. She agreed with my statement. She agreed to send me to a Rheumatologist, and agreed to send me to have the biopsy. I also mentioned a non traditional Lyme's test that I knew was more accurate. (My father has Lyme which was missed many times by the traditional tests and finally diagnosed my a not well known test called Igenx.) I told her I'd like to take this test. She was certainly agreeable. Agreed to 'What ever 'I'D LIKE?' But who was the doctor? Was I supposed to come up with my own idea's on where to go from here? Sure, she gave me a new prescription for Ritalin and claimed it would help my energy levels. I wasn't given a pat on the back this time and told I would be sick a long time and there was nothing they could do. But, it felt the same when she told me she'd 'be there for me on my journey of CFS.'
I was back to where I never wanted to be! Hopelessly ill and on my own.
Hi Angie, I have just shared your blog with friends. Hang in there XXXXX
ReplyDeleteLike yourself, I too am waiting for Medical Assistance. Ampligen & Antivirals seem to help so many - when they make it mainstream we will all be able to get back to living with gusto!
Sending my very best wishes for yourself and your beautiful family ((((Angie))))
Leslie... I know it's been many months since you commented on my very sporadic journal. I, obviously, hadn't been checking in for a while. But, I DO, really, appreciate your wishes. Thank you!! It certainly helps knowing I'm NOT alone (even though I feel like it many days) and there are other's 'out there' who do really understand what I'm going through.
ReplyDeleteI, too, tried antivirals years ago. They didn't help. I'm curious, however, what Ampligen and Gustol are??? Are you taking these? You must have a CFS like illness yourself?
I'm sure you know how it is... after being so sick on and off for SO many years, you are willing to try anything (even sacrifice an arm or leg if it'd help) to... just. get. better!!!!
I'm also curious how you qualified for medical assistance? As, I have had to quit my job this past year, due to being unable to be reliable for work, and the loss of an income in this economy has not been easy (esp. with all of the deductible/copays/med's I'm on that I didn't have when I WAS working.) I looked a little into SS benefits.. but I doesn't look to me that a vague DX of simply CFS is covered???
Thanks for any advice you're willing to offer And, thank you SO MUCH for blessing me with your sweet little message of comfort.
May the Lord bless YOU, Lesley. You will be in my prayers! =D
Angie, I too have CFS and its a nightmare. Some days I get angry just at the thought of getting out of bed. I also had to quit my job due to not being reliable and it has really hurt our family. My prayers go out to you and your family. Maybe we can keep in touch
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