Diagnostic hell

It’s been awhile since I posted. Frankly, I’m exhausted and a little miserable and am doing my best to focus all of my writing energy on the project I’ve been assigned at work. WordPress tells me that I should be celebrating my blog’s anniversary, but my body is pointedly reminding me that I am currently observing my first anniversary post-diagnosis with fibromyalgia.

I’m no longer sure that’s an accurate diagnosis, or if it is, whether it’s my *only* diagnosis. I am back in the land of blood tests and fancy procedures and being grateful for my insurance not requiring copays for those fancy procedures. (I’ve just had a gastrointestinal study and seemingly am supposed to have another one soon. I’m scheduled to see my GP next week, likely to do more than just the one blood test I’ve asked her to order.) There’s just something very odd about being diagnosed with (and treated for) the stomach bacterium Helicobacter pylori (which can cause ulcers) and then shingles within a six-week period. Neither infection is the kind of infection that you just get from someone else – they’re the kinds that tend to linger in your body and emerge, one day, for reasons we don’t yet understand fully.

Work has become stressful in a new way: I have been feeling too close to the research materials (studying human biology: totally weird) because of the medical aspects of some stuff and my being a patient so often these days and because of the genetic ancestry stuff I’m doing that makes me feel too much that I’m alone in my lab group as not-male and not-100%-European. So at the end of the day, I’m usually in physical pain and have a hard time being thoughtful. This is made worse by the fact that the frequent vomiting makes it really hard to find foods that are nutritious and satisfying, and water sometimes triggers vomiting, so I’m not eating or drinking consistently and am spending my evenings sitting on my couch playing video games, watching TV, or reading fiction.

In the meantime, my life as big sister is…interesting. I mentioned that I wrote a little book that’s meant to be a casual introduction to my sister’s life, from my perspective, and since my family has been interviewing a whole lot of staff in an effort to replace people who are not working out, I’ve heard from a lot of new people that they like the book. Nice to hear, but I’m not sure how much of a difference it is making in my sister’s interactions with those people. Watching from the sidelines makes me want to sit down and tackle the draft of how people treat us based on how we look or seem to them, because, wow, I’ve learned a LOT about how people see my sister in these last few weeks. I am thankful that Lily has remained a pretty dynamic conversationalist on the phone; it tells me that no matter how frustrating her staffing situations might be for everyone involved (I consider these poor matches that strain staff and client both), she’s still paying attention and thinking and in relatively good spirits.

And my mom came out to where I live to help me deal with the first GI exam, because I had to be under anesthesia, and they don’t let you leave their office alone after that. It was immensely gratifying and still is really hard to cope with my mom telling me not to feel guilty that I am struggling and need help, even if she and my dad are always busy taking care of Lily in one way or another.

So: plenty to write about here, and insufficient resources to get that done in a timely manner. Maybe in the next couple of weeks I’ll start getting back into blogging, as this work project winds down. (Not that I’m going to hold my breath!) But I’m still here and Lily’s still doing her thing, despite everything life has thrown at us recently, and I’ll share more of our stories when I can. 🙂


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