Diabetes Social Media Advocacy Blog Guest Post

I know this is a bit late, but I was a little out of it when this first posted over at the Diabetes Social Media Advocacy blog: http://diabetessocmed.com/2010/guest-post-by-virtue-b/

I'd like to say thanks to Cherise and everyone over at DSMA for allowing me the space to write. All the posts for Diabetes Awareness Month were great to read.

Thanks again,
V.

In the sea of endless night

So, I've pretty much stopped sleeping.

I had problems with insomnia since forever, and maybe ten years ago started to taking an older anti-depressant at night to help me sleep. But in September when I stopped eating gluten and started feeling better I suddenly found I could sleep without any meds.

When I changed my diet I knew full well that eventually my doctors would tell me to start eating it again for about a month before the did an endoscopy to see if I did in fact have a detectable reaction to gluten. I had all these ideas that I would argue or put it off until I had finished school, but somehow in the doctor's office I didn't even flinch. I just agreed to start eating it again.

I thought, very briefly, it might be nice to have all the foods I had before... I even thought I might enjoy it. Make a list and eat whatever, just in case I find out I wouldn't be able to eat it again. I don't know how I could have been so ridiculously naive. I spent the first week in agony. I stopped sleeping then because I was in some serious pain. But, then it stopped. I don't feel any of that anymore.

Now, however, I feel like I'm losing my mind. I can't sleep. The other night I stayed up thinking of the same thought over and over. I have a rather disturbing temper now, which I think stems from the fact that I go through periods where I feel rather disoriented or confused. The other day I lost it and punched the side of my desk. I didn't really think it was that hard Okay, I punched it really hard and I punched it three times. My knuckles maybe had a bit of a black-eye for a while. It was one of those things that seemed helpful at the get-go (and honestly it was a pretty good release after a particularly stressful day), but turned out to be kind of stupid forever after thing. Also annoying, the bouts of spontaneous crying have returned. I got my flu shot the other day and there was a kid screaming and I almost completely lost my shit.

Let me tell you about my usual self: I used to work looking after kids. We were at the park one summer day. Somehow one of the spikes anchoring one of the swing sets had come unearthed from the sand. A little boy running around barefoot stepped on the spike and it tore into his foot down to the bone. His grandparents were kind of stunned and rushed him over to the fountain and just kept flushing the blood away. I walked up and asked if they had an extra diaper. I remember the man said something like, "Why would have a diaper at a time like this?" I calmly apologized for not elaborating and explained that if they had a diaper they could wrap the foot up in the diaper, tape it shut with the tabs and drive the boy to the nearest ER. So, I got them a diaper. They wrapped it up and away they went. I returned to playing with the kids without thinking twice about what happened (though I do remember somehow dealing with that spike too, thought I don't remember how anymore.) I miss that self, the person that could just deal with stuff. I'm not opposed to feeling anger or sadness or whatever, but I am opposed to it like this. It is not my normal.

Anyway, I have two weeks left of eating barf bread things and then the scope. I am not looking forward to the scope, but I think the doctor sensed the panic look in my face and mentioned they could give me something if I was really anxious about it. I just really don't like people near me in a way that I can't control. In the meantime, too, I've called the doctor that first prescribed those meds to sleep. I can work my head around self destructive behaviours for two weeks... if I have sleep.

I'm trying to keep an open mind about all this. I keep telling myself the tests might all come back fine. Maybe this is just related to other things. Secretely, though, this shit is not making me feel good. I think I just keep telling myself it's something else so I can push through the next two weeks. The truth is, after all this is done, I'm never eating gluten anything regardless of what the tests show. My body is telling me it's done. Even my blood sugars are messed, with unexplained lows after eating and equally bizarre highs at other times.

I miss sleeping and dreaming.

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...