Sorry if my last post left you a little sad. Truth is, it was a very sad time for me. I didn’t know how long it was going to take to get better. Sometimes the downhill plummet that I’ve experienced takes me to deep dark places that are better left bottled up, but I’ve since learned to work through it. Still doesn’t make it easy.
I have, however, turned a corner. It’s noticeably better than it has been. The palms of my hands don’t look like they’ve been scrubbed raw. The backs of my hands, while not the best, are not angry, red, and dry and worrisome. I feel like, even though it would take the entirety of my being to be brave enough, I could probably venture a t-shirt. Without a sweater. Maybe.
I remain, however, conservatively wary. Is this going to see me through until I’m back to where I was? Or is this just a lull before the storm? Such a pessimist.
But every day between now and the answer to those questions remains just a day, and I have to be positive, no matter what.
Cary and I went to Rome together for a few days years before the Bambina. We decided to take a walk at night. It was warm, and as it got darker, it became harder to read the map, so we decided to meander. As Rome is, and many cities around the world, when the weather is nice, people go on strolls to enjoy company and enjoy the sites. We were looking for the Trevi Fountain, made a few bad turns and had to double back, when all of a sudden we turned a corner and came smack dab onto the Fountain. Magical.
Every now and then you do turn a corner and get completely lost and disoriented. But every now and then, you turn a corner and find unexpected moments of bliss.
In July, I was in New Orleans. The weather was hot, that kind of humidity that makes you a little soggy but makes you glow a little with the heat. I was in a strapless dress, walking by St. Louis cathedral with friends. I marvelled at the feeling of the heat and pulled out my umbrella to ward the rain off my shoulders.
In November of last year, this would have been a foreign scene to me. I would not have found myself in a strapless dress. In the daytime. With people. I probably would not have went out to buy the dress in the first place. I would have reverted to my standard uniform. Long sleeves. Pants. No matter what weather, no matter where I was.
But in July, my skin was clear. It was basically all that I had hoped for. Nothing to worry about, no more watching glances from people. No more hiding. It was me being myself, finally. I went into St. Louis Cathedral that day and said a little thanks.
Fast forward to today. I am back in hiding. A recent bout of hand, foot, and mouth disease took me to the edge again. It started with a fever on one of the most important days of my academic life in early August - the opening of the program I oversee. I was meeting parents and students, overseeing a big production. I felt sick - not 100%. As the day went through, I felt woozy, almost wobbly. I didn’t shake a single hand which it completely unlike me- I was sure I was ill, but not sure if it was a cold or if it was something else. I didn’t know that once I got home, I would pass out in a cold sweat, moaning with something terrible taking over my body. It felt like a fever that day, and I could barely move.
I stayed home for the rest of that week - my feet and hands started to swell and soon I couldn’t walk. I couldn’t even pinch open and close things with my fingers. My daughter came down with HFMD two weeks prior, and she was fine - little bumps here and there, but she bounced back. I was waiting for my bounce. Except my bounce never really came.
I spent the new few sleepless nights (because the pain in my hands and feet were unbearable, even with acetaminophen) researching HFMD, trying to determine if I had the standard iteration of HFMD or if I had the Holy Shit Version of HFMD. I expected the dots and bumps per the CDC updates, but the part that scared me the most was that it affected my psoriasis to the point of having to contact my derm to make sure I was going to be okay.
As someone who has a immune disorder, to encounter HFMD terrified me because I didn’t know how it would affect my clear skin. It indeed kicked off a major flare up. I had to go back on the medication that I was on before MTX to relieve the swelling of my skin (this was NOT the HFMD, it was my psoriasis). I needed to see my derm, and we consulted almost daily to make sure I was okay.
I was not okay. A week later, I returned to work, so back I went into hiding. Pants and long sleeves. Even worse, it was at the beginning of the school year, so I was meeting parents and students - crowds of people. My hands were wrecked with HFMD - and the most visible part of me other than my face was hideous. It was horrible for me, and I had to go back into positive self-talk mode again. It was going to be okay. I am not my disease. It was hard, for sure, but it helped immensely.
For the first time, in a very long time, I found myself in tears. It was painful, unbearable, and I felt like no one understood how much I was in pain. Bambina, ever her playful self, kicked me often in my feet - and I doubled over and cried hard. It was the worst I ever felt. Ever.
I wound up getting the cray version of HFMD - with manifestations all over the body instead of just on the hands/feet. My psoriasis, not wanting to be undone, kept pace - and once again, I was full bore. The good news is that finally I’m starting to calm down - but it’s going to be another few months before I feel comfortable again like I was in July.
I am continuing the MTX and using more topicals to help soothe things. I feel like I’ve finally turned the corner and am moving to a good place, but it will be a few more months again until I feel better. Until then, I have fleeting moments of joy, like the rain in New Orleans, to get me through.
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So I’ve been lagging on the methotrexate posts. This usually means it’s a good thing. And then it became a bad thing.
So I’ve been sitting on taking 15mg a week, and that’s been working really well. Then all of a sudden, I started to get that familiar itch. So familiar, I didn’t think twice to ask myself what it was. And then I started to panic.
What started to happen was the return of the spots, the return of the itch that never dies, the fear that yet another therapy didn’t take. Great. I thought about calling my doctor to update her, but I thought I’d let it ride and see where the disease was going to take me. Funny, isn’t it. I’m so used to riding it out that I didn’t think to call my doctor. I was going to see her in two weeks, and who knows, maybe it would turn around. It did, sort of.
So I decided to bump the dose up to 20mg. My doc and I discussed it and she felt that it was a good thing to do. So whereas I was stable and not needing to get labs done twice a month, it was time for me to get labs done weekly again. I’m at the facility so much, the parking lot guy doesn’t charge me anymore. Pity the sick girl. Thanks dude. I really do appreciate it. Parking there is expensive.
Anyway, so I’m back to weekly blood labs, and the dose got bumped up. My doc asked me what happened, and I said, “oh, the students came back to school.” So basically, it’s work. Eep.
Oh well, that’s life. I’m feeling stable right now, but I’ll update you in a week to let you know how it’s going.