I am tired and here is a signal boost

I had an MRI last weekend, and an abdominal ultrasound this week. I have a work deadline today and a job application deadline that I really hope means they accept stuff today, because I just sent in my package.

Someday soon I hope to post about the fact that Lily is about to turn 30. (!!!!!!!!!!!!!) This is…it’s something. And I am scrambling to look for a job and to deal with my own continuing diagnostic adventures, but I have to do something special amidst that scramble to help mark the fact that this remarkable young woman has defied her doctors’ expectations and lived and blossomed.

So while I scoot around my world, please go read this: “On The Fear Of Being Different: Childhood, Audism and Able-Bodied Privilege”, posted at gradient lair.

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.

My sister is disabled, and my extended family are not really around

I’ve talked some about my struggles with anxiety and depression here, and my discovery that this is likely linked to fibromyalgia. I’ve been working with a therapist, and have been since a really awful depressive phase not so long ago that I needed help getting out of. This sets the scene: we were talking about Lily, and how I sometimes feel like my parents unwittingly have treated me as their primary supports. My therapist asked me whether I had extended family who could help support my parents, and I told her that they had sort of faded away years before.

Look, I know that Lily is a handful. She’s weird to look at, she’s hard to understand, she’s almost defiantly imperfect…and my family, like many people, values appearances and propriety and sophistication. (Well, the family I know. We’re/I’m estranged from a number of them.) Lily doesn’t fit into the paradigms that I see my family claiming.

Despite whatever other impressions I may convey here or the frustrations I may experience, I feel like my nuclear family really is one of the best on the planet. When I visit them, we’re just fine without anyone else around. We have lively conversations, we laugh and fight and play, we cook and eat, we garden and go for walks and watch movies and do normal life stuff. It’s great.

But my feelings about my extended family are much more complicated. Some of them are awesome people, the sorts of personalities that I can remember knowing were kind even as a small child. Others are just not the sort of people with whom I would normally choose to spend large chunks of time. This impression has just grown over time, as I’ve grown. Look, my family are generally good people, but honestly? I think some of them have struggled with Lily, and with the general vibe my family gives off. (I think we’d be black sheep even if Lily were less obviously different. I should also probably mention that one side of the family is also more distant because they’re (a) more physically distant and (b) there’s a difference of religion.)

Allow me to give a little background: I consider myself to be the “grandchild” generation. I was the second grandkid and the first girl. The boy that came before me was born with severe disabilities. I remember spending time with his family after Lily was born (I don’t remember anything – I think – before her birth).

I can be honest: I’ve spent far too much time resenting their behavior, rather than accepting them for who they are and relating to them on their own terms. My ideal is believing that in a society like the US, we should never compel any one person to care for someone else against their will. That works out okay if other people want to help; if others don’t, though, it gets really messy, really fast. (Which I’m sure you’ve noticed as I’ve talked about my own feelings about caring for my sister!) I’m trying to let go of worrying about my nearly-absent extended family. It feels like wasted energy, now, and because I have some of the best friends a woman could want and we live in the US, which does sometimes try to take care of its own, I can let go of some of my anxiety about being there for my sister, or for my parents and they take care of Lily.