Ten days ago, I thought I was going to end up in the hospital again. My generalized unspecific inflammation had skyrocketed with the introduction of a new medicine the day after Thanksgiving, and a week later, I had to stop taking it due to some very serious, potentially life-threatening reactions. My body’s immediate response to any of these kinds of reactions is to turn up every single inflammatory response, as bodies are supposed to do when exposed to attack (illness, injury, etc). The problem is, I was already at an 11, so ramping up inflammation caused my body to crash. Over the first weekend of December, every bone, muscle, joint, and organ in my body hurt individually. I’d gained 4 lbs in a week of pure inflammatory fluid. My eyes wouldn’t see correctly, my digestive system shut down, my skin broke out in rashes, and every tendon/joint was so tight that I literally couldn’t not lift my legs (had to shuffle-walk), nor could I stand up or sit down without aid. So yeah. I thought I was going to end up in the hospital again.
Instead, my rheumatologist came to the rescue and prescribed me a 12-day tapering pack of a steroid called methylprednisolone. I’ve been on 6-day tapering packs of this stuff probably a dozen times in my life, the earliest being around the age of 12 with my first major hive outbreak. I know I tolerate these steroids well (unlike something like Prednisone, which I definitely do not!). Most people hate taking steroids. They cause weight gain, constipation, problems with blood sugar management, increased appetite, and more. Y’all? I love these things. They aren’t a longterm solution and I would never want to take them as a daily regimen, but MAN steroids make me feel like a normal human being again.
Y’all have heard me say that my body is an alien, yeah? Well, here’s a good example. When I’m on steroids, I do have some of the issues people get, like blood sugar fluctuations and extreme hunger. On the other hand, I lose weight as if I’m crash-fasting. It’s not true weight loss – this is why the scale is a really crude and poor judge of actual health or size determination – it’s because my body sheds all the inflammatory fluids it’s built up. My fatigue disappears and I have energy for once. My skin glows and becomes healthier. All the random aches and pains go away. I feel like my body is 15 years old again, like I can do anything.
It’s no different this time. In the first four days of this pack, I’d already lost 6 lbs, while eating at least 1.5x more than normal. The pain in certain tendons – particularly the right sciatic nerve/tendons and the left psoas area – didn’t go away completely, but for the first time in weeks, I could lift my left leg up at the knee more than an inch or two, and I could move it in an inward motion (like to cross your ankle over your knee). I could sit/stand without support, and could even get on and off the floor easily, squatting, kneeling, or from any other position. I could move freely again! My eyesight and digestive system returned to normal. And weirdly, the localized triangle of swelling on my left foot almost completely disappeared – when it’s been there for fourteen months now. (Photo: top taken 12/5, bottom 12/11 – same time of day after same amount of movement.)
Of course, things can’t continue on this way. Steroids aren’t a permanent solution. This particular pack started at four pills a day, then three, and so on down. I’m currently on the first day of the trio of one-a-day before going off the pack completely. On a 6-day pack, I notice the effects start to wane and the inflammation beginning to win again around the midway point (three-a-day, when it starts at six-a-day). It was the same here, right around Monday, when the steroid side effects (too much food, blood sugar fluctuations, insomnia) combined with increasing inflammation caused increased fatigue and the beginnings of pain again. My weight stabilized about six pounds down, sure to increase a couple to pre-spike levels after I’m off the pack altogether, and the intense hunger dropped off when I got down to two-a-day. A little fluid has returned to my foot as well, but it’s still mostly fine. I’m sure that after I’m off altogether, a lot more of that fluid, fatigue, and pain will come back. I’m just hoping this pack can reset me enough that I’m not at hospital-levels of inflammation!
And in the meantime, I’ve enjoyed my brief break from the realities of my f-cked up body. In complete contrast to the previous weekend, this last one was amazing. (All pics from this post, except for the pre-steroid version of my feet, are from this past weekend.) Jason and I went hiking together on a new-to-us trail. I attended a cookie party with some friends that same afternoon. The next day, I spent the morning baking the sugar cookies that we would later decorate in the evening as a family, including facetiming with Morrigan and his girlfriend Katy, which was so nice! Especially since Morrigan doesn’t yet have the time off of his new job to come down to TX this winter.
Even beyond the fun stuff, it’s been incredible to get some very basic things done: laundry, cleaning my room, organizing my files, etc. Invisible illnesses suuuuuuck. I’m just really grateful for the science that can give me a slight break when things get too bad, and that I didn’t have to end up in the hospital again last week!!