I’ve purposefully not written anything for a while because I’m actually pretty superstitious and didn’t want to jinx myself. Even now I’m wondering if it’s too soon… But it’s time for an update since my major flare, fecal transplant and the continuation of my Humira.
I forgot to mention when I was recounting my past with Crohn’s is that the horrible Mr. C. also gave me lichen planus…in my mouth. In July 2011, I had settled into my new (dream) job in downtown Indy and the café at work was AMAZING. I love to eat and they had an incredible salad and fruit bar. Every day, I ate fruit and I noticed that my mouth starting getting irritated. I assumed it was the acid from the pineapple and I stopped eating it. Then my tongue started swelling and it hurt to bend it. I couldn’t even brush with toothpaste because it hurt that much. I was using baking soda and water; and it didn’t remotely feel fresh. Eventually, my gums got really red and puffy, and they actually receded. If you know me, you know my absolutely, number one, super-duper fear is losing my teeth. The issues with my mouth started panic that all of my gums were going to run away and with it, my teeth. I first went to my dentist and he said to try my gastro because it definitely looked like an autoimmune issue. I went to my gastro and he said it wasn’t from the Crohn’s (as far as he could tell), so he sent me back to the dentist. The dentist then sent me to an oral surgeon who then did a biopsy to figure out what it was. That biopsy came back as lichen planus which is normally a skin condition, but also effects mucus membranes. Lovely. My dentist sent me to a dermatologist since it’s a skin issue and the derm gave me a medication used for lichen planus topically, but shouldn’t be used internally because it can cause cancer (but a little bit wouldn’t hurt). I then go back to the dentist, who I should mention I adore, and he says he honestly thought that’s what it might be because 25 years ago he had a patient with Crohn’s that had the very same thing happen to them. You never wish harm on anyone, but you also don’t ever want to be the very first person who goes through something like this. Anyway, he said the challenge with a topical cream that isn’t meant to adhere to a mucous membrane surface i.e., my mouth. He did a mold of my mouth to make a retainer. He carved out special pockets where the inflammation was severe so that I could put the ointment in there and wear it overnight and hold it on the right spots. Three days later, it started getting noticeably better. A week later, the redness went away. Two weeks later, it looked normal again. Praise be! So, yeah, that happened. Just a reminder that Crohn’s can, and does, effect mucus membranes from your mouth to your bum.
Stress is a huge factor for me with a flare. Doctors and scientists can argue about what does or does not cause an autoimmune disease and what makes it flare, but I’m telling you…stress does it for lots of us, including me. In July 2011, I had just started a new job, semi-relocated to Bloomington (all while my dog was staying during the week back at my house with a friend) and also was months away from a wedding. Stress doesn’t describe all of those major life changes. I was neglecting my body and my body is always pretty good about pulling the “Crohn’s Card” when that happens. Thankfully, I was able to find the miracle of modern medicine to help soothe Mr.C’s nasty cousin, Ms. LP, back into remission. Even today, I don’t use certain toothpastes that seem to burn my mouth and I won’t eat pineapple. I just graciously bent my non-inflamed tongue as a reminder of how grateful I am that it’s gone.
Getting a little philosophical, it’s amazing to look back and see the challenges and struggles you got through. Crohn’s repeatedly has tried to knock me down, but somehow (over and over), I have managed to get back up. If life had medals, I’d have a small trophy case to display a few. I am very, very lucky. I haven’t gotten a re-sectioning (knocks on wood) and I’m on a medication that seems to finally (finally!) work. Also, my current gastro, Dr. S., basically attributed my immense willpower to somehow being able to not be admitted to the hospital. All of the gastro doctors in the practice now know I’m a badass. I will wear that badge.
I’ve been back at work for a few weeks now and while it feels absolutely amazing to have purpose again, I will tell you that I’m still learning to balance the demands of being a normal, productive member of society against the side effects of my disease and my medication. The first week, I was exhausted. I could barely drag myself out of bed and then when I got to work I was trying to catch up on everything that I’d missed during my two leaves. By week three, I felt like I had my groove back. People don’t know why I was on leave, but so many of them said “welcome back” and that feels really good. The hardest thing to remember is that people don’t know and so they don’t know that sometimes I catch myself sitting in my office and when I blink my whole body just aches. It aches so much that sometimes I lean my head back for a few seconds and take a deep breath to refocus. And that I miss my daily nap. Every other Thursday, I go home and stare at the injection waiting for me on the kitchen counter and I have to talk myself into it again. Even knowing the horrible pain I was in during the summer flare and the pain I would be in if I was admitted to the hospital, sometimes I have to actually talk myself into doing my relatively painless injection. I say painless because the actually stick doesn’t hurt, but the medicine going in, however, now that does have a sting during and after. For two days after my shot, all I want to do is sleep or lay down. The fatigue is the major side effect for me. We Humira Junkies call it the “Humira Hangover” which sucks because unlike a normal hangover, I didn’t get to have a fun party the night before. My point is…they don’t know. So when I hear that phrase “Be kind because everyone is fighting their own battles”, I truly understand.