Wednesday, November 17, 2010

This is the long verions... (Part 2)

So, this is part 2, after part 1. I started writing this when I wrote the first part, before I broke it into two parts. The original time stamp on this section read 12:58 AM October 21, 2010, but I never hit publish and instead it went through rewrites in bits and pieces since then... To be honest, I don't feel much like writing this part anymore, mostly because I'm tired of all this, but...

Bloodwork came back. Nothing. They found nothing. But, wait, I should rewind... It took everything I had to get out of bed and I was five minutes late for my appointment and the receptionist lectured me about being on time and told me that if I were late again the doctor would stop seeing me (I was obviously unwell or I would have schooled her on human rights complaints in relation to accomodating disability, but anyway... back to they found nothing...) I started crying (in part to the test results and feeling frustrating, but also in huge part because of the receptionist.) But then, the doctor wondered if I was perhaps depressed. In full-blown sob I said, 'No. I've never been depressed like this. I'm in pain..." I didn't even mention about the conversation with the receptionist. It was too much work. I did, however, manage to get sent to a rheumatologist.

They thought I had fibromyalgia, but after the appointment the rheumatologist said otherwise. She sent me for some more bloodwork. She didn't tell me what the tests were for, but I recognized the combination and names as those for lupus and rheumatoid arthritis. I was already on painkillers and she gave me enough refills to last the rest of my life. Those pills are the only way I managed to get out of bed everyday and go to school. I stopped cooking and just bought food. I stopped doing laundry. I stopped cleaning. I stopped doing anything unless I really had to...

On top of this my blood sugars decided to give me the finger. Within the span of about a week or two, for absolutely no apparent trigger/reason, my insulin needs skyrocketed. I have never had to call my endocrinologist to help me figure out how to manage my diabetes. I've been lucky in always having been able to manage on my own. So, when I called her office asking for help, she returned my call within half and hour and also got the CDE at a clinic I was registered at to call me. She just told me to keep boosting my levels until it evened out and to keep her updated. I think they stopped after I'd just over tripled everything.

Back to the rheumatologist- my tests came back normal. She eventually sent me for x-rays, because she tought maybe it was a bunch of other things and those came back fine. I was starting to get a bit peeved that all my tests were fine, but I was still feeling so shitty. I was also starting to worry that my doctors were thinking it was all in my head. I worried about that a lot, until one day I finally realized they just had no idea. I learned from all this that doctors (and maybe all people, really) are not very good at saying 'I don't know'. And, maybe they thought I thought they ought to know. I hope I didn't come across that way... I just really, really wanted them to know, which I think is a little different (thought perhaps is interpreted as the same as the former.)

Anyway, eventually the rheumatologist said something to the effect that she couldn't find anything physically wrong with me, so all she could figure was that my joints were joints were quite lose and could maybe cause the pain. Maybe I read that wrong, but somehow I took that as an I don't know. But, she didn't leave it at that-- she also said for me to come back in six months for a check-up and to come back right away if things got worse or there was swelling. That last part made a lot of difference at that point, because instead of being the 'I don't know, you're probably just depressed' or 'I don't know, it's probably just a virus', it was 'I don't know, but were going to keep on top of this until we're sure it's nothing else.'

So, I felt okay with that plan, but I was a bit skeptical of her diagnosis. Not because I didn't think her a capable doctor, but because I had a whole host of other symptoms that I couldn't explain with that diagnosis. By that point, my skin was literally peeling away in patches. I had parts on my scalp where if I scratched, I would get big clumps of skin peeling off; while after a shower, drying off my arms the skin would peel and look like little eraser bits. My hair was brittle, dry and falling out. My nails were brittle, peeling and breaking. My teeth were chipping on a regular basis and sometimes event felt like they were loosening. My tongue was flattened out and smooth. My saliva was disgustingly thick and I was majorly thirsty all the time. I was bruising, like massive bruising for no reason; while, any cut I had was majorly bleeding, even the pricks to my finger after lancing. My vision was messed. My feet and hands were tingling all the time. And my cognitive functioning was getting duller and duller and duller.... Until I started to have trouble telling the difference betweem dreaming and waking.

Even though a lot of things from the past year have been a little foggy, I do remember I kept looking at this picture:
Yeah, that picture. I couldn't figure out why I was so drawn to it. I mean, obviously, having diabetes and knowing the history of this photo (it is a picture of a child with diabetes before insulin), the picture is upsetting... But it took me until I felt well again to realize the underlying reasoning going on in my head; All throughout all of the doctors' appointments I've said the same thing over and over: I feel like I'm getting diabetes all over again- the thirst, the parched skin and lips, the lethargy... but there was something more to it that I couldn't verbalize and that was this: I felt like I was starving to death; that no matter how much I ate (and I ate A LOT) I was always famished. Except this time, instead of it lasting the few months it did with diabetes, this time it was going on for at least two years.

I'm not going to tell you what turned things around just yet. I've had too many times that I thought things had been figured out or at least on the right track, only to be disappointed. Also, I'm still very much in the middle of all this and I don't feel like I'm doing quite as good an explaination of everything as I would were it a bit more in hindsight... or maybe it's just too difficult right now. Anyway, tomorrow I go see one more specialist and I hope it is the last one with which I have to meet. I will let you know how it goes and what (hopefully something) is resolved from it.

But, in the midst of this I went to the rheumatologist... and she turned out to be really nice. She did all the usual doctor things of asking for symptoms and doing physical exams and ordering (more) blood tests. She also asked if I was doing anything over the winter holidays. I said I was just going to relax at home. She told me about how she usually goes with her friends to new york for New Years. In the end, she spent an extra fifteen or twenty minutes just talking about regular things and getting to know me... which eased my anxiety, if not physical health.

I stopped having those dreams when I stopped taking care of kids for work. That was maybe three or four years back and until recently, I'd completely forgotten about the nightmares. It wasn't the content that brought it back though, it was the reminder of the gut feeling that used to go along with those dreams brought them back to mind...


Jamie Naessens said...

OMG, that breaks my heart for you. I hope you find an answer & soon! I can't imagine feeling like that but I'll be putting out every positive vibe your way. I think sometimes is finding doctors that will listen to you is half the battle. One thing comes to mind though after reading this - could it be that you are allergic/sensitive/whatever to the insulin you are on? I'm not a doctor or anything of course, but when you say it feels like you have D all over again... well, just thinking out of the box I suppose. & if you don't want to publish my comment here, I understand totally that it might not be best to do so... and in the meantime, I'll keep sending you those +ve vibes!

Virtue said...

Hi Jamie :)

So, first: I think you were clear that you don't have a medical background and were just offering suggestions and support, and not medical advice... so I decided to post the comment...

Most important though: I appreciate the positive thoughts. I'm feeling really nervous about it all. It makes it a little less anxiety provoking to know there's people behind you, though :)

I'm seeing a gastroenterologist (maybe I should have put that in), so thinking is that it's something to do with digestion/food allergies. I changed my diet and things got better. We'll see!

Thanks again for your thoughts and ideas :)

Post a Comment