Food (Or, I am Summer's Gut)

My relationship with food? It's complicated. My bored asshole immune system has decided that my gastrointestinal system is its new playground. It literally hates my guts. Nausea? check. Pain? check. Oh hey look, there's an eject button in my intestines? Check.

I've had issues with nausea for a few years but it's gotten worse in the last six months. At times I struggle to eat enough, so nuts or bags of M&Ms are my new bedtime snack. When I do eat I often have pain, to a greater or lesser degree, which makes the whole thing not much fun. The pain is very similar to feeling overfull. I've always disliked that feeling and will happily leave one bite to avoid it. Now, however, I have to push through.

I think my endocrine issues are playing a significant role in this. I return to the Endocrinologist on Tuesday to discuss my lab results. Cortisol was high I know, but endo is tricky! That's why we have doctors ;) Seriously though, I'd love to be medically boring. That would be amazing.

Posh or Not

First impressions are important. No matter what a doctor may have read in my chart, she still forms an opinion of me when we meet. I present as an intelligent, educated, middle class white woman (undereye concealer plays a big role). In short: posh. In reality I'm poor, prefer rock to classical, dropped out of college, and am decidedly unfancy. Just thinking about being posh makes me itch.

Sometimes my "healthy person drag" counts against me, making me seem like a bored, attention-seeking malingerer. The best docs see through that, however, and realize the effort involved in creating that illusion. Having pride in myself shows that I haven't lost hope, that I want to function in and enjoy the world. The best medical professionals take me seriously, accept the contrast between my outward appearance and extensive medical record, and work with me to build a treatment partnership. You don't have to be or look posh to do that.

This day I was looking particularly good :)

Let's Talk About Pain

I'm always in pain; it's a fact of my life. Yet I almost never talk about it. Pain is not relatable, pain is unquantifiable, pain is invisible, and pain is personal. With the war on opioids, pain is also political.

The amount of daily pain I experience is unimaginable to the average person. Yet I'm so used to it that I forget how abnormal it is. The Mankoski scale is a good gauge with caveats: 22 years of constant pain mean my brain and lifestyle have adapted. And pain meds (please don't call them painkillers) don't work on my pain.

Mankoski Pain Scale: 

6 – Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 – Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 – Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 – Unable to speak. Crying out or moaning uncontrollably – near delirium.

If you saw me out and about you'd likely peg me at a 6. My pain is almost never 6. 7-8 is typical. It took me a few years to train myself not to make "pain face." Sleep is always a problem. I often have times when language and cognition* are difficult as a direct result of my pain level. Sudden spikes in pain will knock me back a step or cause grunts or groans.

I cope: I sleep when I can and as much as I can. I distract with music, tv, socializing online, getting out in the world, hanging out with friends. I bounce by attention around online to increase the distraction. When it's really bad I have a drink or two, vape marijuana, or sleep. But alcohol and MJ don't reduce pain, they just make me care less. Other people have their own coping mechanisms because pain and coping are individual.

I've made a good life through a hell of a lot of work. But sometimes I still wonder what it would be like to be pain free. I can't imagine.


*I mistyped cognition, autocorrect fixed it, and I had to stare at the word a couple times before I confirmed that it was the correct word and said what I meant. This is not uncommon.

Mission: Very Difficult

My mission, whether I like it or not, is to get myself to the hospital lab for a morning blood draw. This may not seem like a big deal but I am not functional in the morning. I'm supposed to have the draw asap after waking, however it takes at least an hour for my brain to really come online. My waking time of 10am means I can avoid traffic, though.

Transportation is the main consideration. I live intentionally close to the main medical center, but driving oneself to the hospital is never a small matter. I know where to find street parking around the hospital but not at it. And parking garages are complicated. I'll probably take the bus, less to pay attention to that way.

The stress of trying to predict how I'll feel is one of the big issues in my life. I realized recently that I manage very well, considering this is an impossible task. I have become very good at setting and maintaining boundaries!

Less Angry Eyes

I saw the ophthalmologist today and got some good news. All the eye drops and heating and massage actually started to work, and the oil glands are less blocked! Tthe glands that are still blocked (the majority of them) are showing movement of the blockages. Yay!

The last two weeks have been a medical whirlwind. There was an insurance issue with the Benlysta infusions, leading to a last minute infusion cancelation, another rheumy visit, and a rescheduled infusion. I had a total of 6 medical appointments in 2 weeks, not counting physical therapy. Too much. But it's done now and that feels good.