Long time, no see! It’s been a hell of a few months, but what is autoimmune life without a little unexpected misery, right?! For real though, the past few months I was at my worst that I’ve been in almost a decade.
I had to have jaw surgery a few days after Christmas. I needed bone grafting done as my jaw was very weak from bone loss most likely attributed to all the steroids I’ve had to take in the past ten or so years. I figured I’d get it done right after Christmas, that way I’d have a long break to recover before having to go back to work in the new year, and I’d start 2018 off in good health and good spirits.
My diseases had other plans.
Surgery went well. Until a week later when I was still bleeding, still in excruciating pain. I had a post-op follow-up and even though I was on antibiotics, there was an infection and severe inflammation around one of the surgical sites which was not allowing it to heal. So I had a giant open wound in my mouth because my body said NOPE to healing. Which – as us spoonies know – when you have inflammation they give you – STEROIDS. The same damn thing that caused me to have to have surgery in the first place. So more steroids, more antibiotics, and thankfully more pain meds.
The surgical site finally healed.
I got about one “good” week in where my face was okay, I was finally eating solids and therefore had enough energy to give my all at work, home and to myself. I felt “normal”! I did fun things with my toddler, I put in a full week of work, was getting to the gym again now that I could eat enough to sustain a workout, and even had enough energy to go out with friends a few times!
And then, it was like I got struck down by lightning. My Trigeminal Neuralgia decided to rear it’s ugly head after a very long hiatus. It seemed ironic that after all the complications on my left side of my face that my TN came back, since mine is on the left side. My surgeon and my doctor both don’t think there’s any correlation, as they said it would have triggered it right away if that nerve was hit, but it sure seems ironic that I hadn’t had issues with it in years and suddenly BAM. So since I hadn’t been on meds for this for some time, my doctor wanted me back on, as I was getting hit hard – it was every couple of minutes around the clock. And anyone who has felt that pain knows how debilitating that is. I honestly could not function. So I got put on Carbamazepine to help my TN….
It took about a week….but the meds started to kill off the nerve spasms my TN triggered. I was starting to get to that “normal” feeling again, finally! After a week however, I started to feel really run down…like I was about to come down with something. I got really fatigued, and my body hurt more than normal. I took everything down a notch – did a lot of parenting from the couch and working from home so I could stay in bed as much as possible. I thought I was doing all the right things if I was coming down with a cold or the flu…but that wasn’t what was making me feel run down. After a week of feeling this way, I woke up one morning with a rash that covered my entire body – literally from head to toe and every crevice between. This rash was under my fingernails. It was on my palms. In my ears. EV. ER. Y. WH. ERE. It didn’t itch or burn or anything. I thought my Fibro or Behcets was getting wonky because I wasn’t feeling well so I ignored the fact that it looked like my body just had acid poured on it, and took my dumbass to the gym. Well…that didn’t last long, as suddenly while I was there it became very hard to breathe. About 45 minutes in, I remembered the pharmacist telling me when I picked up the Carbamazepine that if I got a rash to go to the hospital immediately. I had totally forgotten about that, so I went home, and did a video visit through our hospital to see if this was actually necessary. She took one look at my face and told me to get there ASAP.
It’s been two weeks now. I’m back at work for the first time in two weeks. I still have the rash, but it is no longer blistered and has started to fade in some places. My dad flew in while I was in the hospital and him and my husband took over all the home and child duties. And they still don’t know what I have. The doctors are going back and forth between DRESS Syndrome and Stevens-Johnson Syndrome – both very similar. Both illnesses caused by Carbamazepine. Both treated the same way. But slightly different in how they affect the body. My labs are being drawn every few days, and each time it confuses my medical team more than the time before. Whatever it is has also triggered a Bechets flare-up, so needless to say, I’m severely conserving my few spoons I have to do only what is absolutely necessary right now. I have to work.
United States Healthcare is a joke….so if I want to have the medical care that I do, I have to work, which causes me to become ill more often, so it’s an endless cycle. I have to be a parent. My husband has to work also, so in the evening after work I’m on my own there, too.
So right now I’m in survival mode. It’s been three months of pure chaos. But I’m still hopeful for this year. I’m hopeful that once I’m over this gigantic hump that all will be a little bit better from here on out.
I am fortunate in that I have a wonderful care team that is extremely attentive to my needs, never keeps me waiting and keeps me actively informed on my health. I wanted to start off 2018 with my health strong and my attitude stronger. My health didn’t work out – but it’s still early. My attitude is somehow still hopeful – and will be even more so once they figure out how to fix this!