Crap* Pie

Well, whether I like it or not, I’m still alive. Still slogging along. Still wishing for what seems to be impossible. Still wanting to reach a day when I look forward to waking up in the morning but being skeptical about the likelihood of that actually happening. Still going through the motions of being a student, smiling, and carrying out my responsibilities (most of them anyway). Still trying to find the balance of toughing things out versus asking for help.

If you didn’t see the picture in my previous post, this is what my right wrist (plus some hand and arm) look like. I’ve been wearing it for five weeks, and it will be another six weeks before I see my orthopedic specialist again. In the meantime, I wear it pretty much 24/7 and have OT (occupational therapy) with a hand specialist weekly.

My splint is pretty noticeable—much to my chagrin. When I wore K-Tape or a small brace, people didn’t notice a whole lot. Now, they notice all the time, and they ask questions all the time too… It’s not that I truly mind people asking what happened, but when people who have never talked to me before see it as a reason to approach me, it kinda seems like I don’t matter, and all they care about is satisfying their curiosity and perhaps appearing thoughtful. Others ask me how my wrist is feeling every single time they see me. Thanks for checking in, but nothing’s changed in the last 4 days, or 16 hours, or however long it’s been. Unless you know of a situation that may have made it worse or that I had an appointment that may have provided new insight, once a week, or even every other week (excepting knowing me well and having a reason for asking) is probably often enough to check in.

I think you’re probably trying to be nice and that you have good intentions, but to be honest, it’s now been a week more than a year since this ordeal started, and I kinda get discouraged and feel like you’re minimizing the fight that has exhausted me and the journey that I’m on when you keep on asking “how’s your hand?” “how’s your wrist?” “is it any better?” “how’s it feeling?”  etc. but don’t ask how I’m doing. I guess maybe it’s not so much that I don’t want people to ask how it is, it’s probably more that it’s only one piece of my current struggles that it’s hard when it’s the only thing people ask about.

When people see “me,” they see a wrist splint. They see a physical problem. Different people interpret it and respond in varying ways, but a significant number of interactions are dominated by stuff about my torn ligaments…

Last week, I got to talk with one of my campus’ pastors. We’ve met multiple times the past two semesters, but we hadn’t met since the splint became my most constant companion. I had multiple things I wanted to talk about, but guess what the topic became? Yep, my wrist. The contraption surrounding it. The impacts it has on daily living. Yada, yada, yada. I appreciate that he asked, but I think 10 minutes or so on that would have been sufficient; it was around 30-40 minutes.

I don’t remember quite what I said, but it was something along the lines of if I were to take the amount that my wrist affects me in life and represent it on a pie chart, it would probably only be around an eighth. I guess that was surprising. Not surprising, was then being asked the question of what else would be in that chart. We did not call it a pie chart, and we did not call it a crap pie. We used a different word that I had never said until a few months ago; when I use it, it’s kinda weighty. We discussed the s*** pie for a bit, and then drew it on a sticky note. We didn’t have time to even touch on the ingredients in each section, but when asked for broad names, I think what I came up with is fairly representative of the general areas of difficulty.

When I look at my little s*** pie, it seems tidy and not so bad. But, the labels are just that, labels—and there’s many, many ingredients in each slice. As an example, the slice I called Health Stuff, includes things like

• …having to be up a minimum of 30 minutes before I eat breakfast because I have hypothyroidism and have to take levothyroxine every morning
• …being out of refills on a prescription and having to schedule an appointment, attend the appointment, get the piece of paper, drive to the pharmacy, and wait for them to fill it (which could be 20 minutes, or it could be a little over a day if they didn’t have it in stock)
• …trying to understand my insurance coverage and pay what I’m supposed to—neither too much nor too little—and making phone calls to clarify benefits, plus talking to providers who tell me one thing (ex: bill should be $25-$35) but then getting an EOB (explanation of benefits) that says something different (ex: I will owe $175)
• …the previous point about insurance plus some other things making it necessary to contact my mom to try and figure out what’s going on and what I need to do
• …always being tired regardless of how much sleep I get (because yay for a rare disease with a prevalence of less than 50 in 1,000,000). The medication I was prescribed helps some with the daytime somnolence, but it’s still not uncommon for me to fall asleep throughout the day when possible
• …pretty much always taking my container of meds with me because I take them five times a day. Iron has to be at least 4 hours from levothyroxine, and so does magnesium. I’m supposed to take magnesium twice a day, but it’s supposed to be with food, so just like that I have pre-breakfast, with breakfast, with lunch, with dinner, and then I take the neuropathic pain med that helps my ulnar nerve in the evening. Throw in being around people sometimes when meds need to be taken, and yep, more stress
• …the fact that I can’t eat gluten. I’ve not been tested for celiac because after discovering on my own that it’s way better if I don’t eat it (I’ll spare you graphically described symptoms), I see no benefit to eating it again in order to be tested, and a couple HCPs I’ve seen agree. Last time I accidentally ate gluten (I’d done my due diligence checking packaging multiple times in a row and knew I could eat it, and then they changed it), I just didn’t like the taste of the food, but I ate it anyway, and about an hour later, I was throwing up. So fun <not> When I was able to check the packaging a day or two later, I saw the offending wheat flour.

Multiple other things are in the Health Stuff slice of the pie, but I think that gives a decent picture. There’s a lot of stuff going on in life. I’m exhausted. I don’t know what to do. I want to fix everything. I understand the idea of human beings not human doings, but doing is what I know.

Day one of the semester, I wanted to give up. I still want to give up, but I’ve made it through five weeks. Not sure how I’ll get through the next eleven, but it’s not optional, so my determination and grit better get ready to take on week six. And perhaps, along with the determination and grit, I can find some grace and compassion for myself. We’ll see…