Monday, July 17, 2017

I'm NOT sick...I'm just...

I know my posts have become a bit more infrequent the past few months. It's partially a reflection on the fact that I really don't have many updates to share. We're still trying to get to the bottom of the relentless GI issues that began last November...

Month 9. I think this is my longest flare to date. At what point does it stop being just a flare and move to just being how things are now? Hopefully longer than 9 months because I'm not quite ready to wave the white flag yet.

I had an appointment with my neurologist this past week. I like my neurologist, I really do. But this time it was a discouraging appointment because I had been holding on to some hope that maybe she could help with some of the increasing neurological symptoms I've been having. Instead, she basically told me what I've been hearing from everyone for the past 9 months...these "new" symptoms are just fall out from my cranky GI tract. Unfortunately that means nothing much is probably going to improve in this area until we make progress with getting my intestines to start absorbing again...everything is just coming back around to GI...

Years ago when we were first starting down this road of on going medical issues, I remember being desperate for a team of doctors who could help. We probably spent every other appointment dealing with doctors who either had no idea what was going on or didn't care to figure anything out or doctors who thought I was making things up or making myself sick. I have been blessed to always have at least one doctor who believed I wasn't just starving myself or making things up, but that hasn't always meant we've been able to do anything about my symptoms.

Somehow I always imagined that once I got diagnosed and finally had a team of doctors who knew what I was dealing with and had the resources to do the right tests and ability to prescribe the necessary treatments that it would be smooth sailing. I kinda of knew I might not be 100% healthy or get all the way back to where I had been, but I had no reason to doubt that what I considered my worst symptoms at the time wouldn't improve. I just needed that team of doctors who cared.

Yet now I'm facing a different reality. I have that team of doctors. I am very thankful for all my doctors. I truly believe that they care and want to help me any way they can. So what went wrong? Why is it that now that I have that team of doctors I used to only be able to dream about that my symptoms are worse than I ever could have imagined?


I remember going in to appointments feeling like I had to fight for what I needed, either because the doctor really didn't want to have to deal with my odd symptoms or because they didn't think there was anything actually going on. At my neurology appointment this past week, my doctor spent about 5 minutes trying to convince me that some things really are more of an issue than I'm willing to admit. That was a weird turn around...

In my mind, I'm not sick. I'm just me. Okay, so I happen to be living in a body that is allergic to the world, have practically a pharmacy in my house (and in my backpack), 2 feeding tubes, a central line, spend more time on the phone with my insurance and pharmacies than my family, but SICK? No way. Maybe I'll concede that I'm living with a chronic illness, but me actually chronically ill?? Nope, that's not right. I'm just...not sure...I can't really call myself healthy either I suppose...

So if I can't quite call myself healthy, and I'm most definitely NOT sick, what does that leave as options??? As someone with a science background, I thought I'd look at it from a purely quantitative perspective. I'm just...performing systemic functional analysis of my insides (with occasional spot checks of the outside as well)...

SPOILER ALERT: I think something's wrong...

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