I saw my PCP today. She thinks that the rash and welts that I have are probably related to my IBD and extraintestional manifestations of it. But according to the National Library of Health, psoriasis is an extraintestinal manifestation of IBD. So, who knows what exactly is going on.
Now I’m on two different strengths of topical steroids to help control the rash and welts. I’m also waiting on getting a referral to see a dermatologist. My PCP said that they’re normally booked out several months in advance. Which sucks. My PCP said that I can cancel the appointment if we get it under control before that but I have a feeling that it won’t be. And I have no interest in having to constantly be putting steroids on my skin.
It’s also a bit depressing to think about. My invisible illness isn’t so invisible anymore. The welts are pretty painful and there was a point where they were making me look like a junkie. And where most of them are showing up is of course on my arm with my new tattoo. I had a new one show up on my collar bone today. And one on my elbow yesterday.
I really hope that they don’t show up on my face or hands. That would be horrible. My hands especially since I work with my hands. I need my hands to make a living.
What I really want right now is to go more than 6 months without something being wrong with me. The last year has been really rough. I got diagnosed with an incurable autoimmune disease. I’ve been hospitalized because of a severe reaction to a medication. Had two different colonoscopies. I was on steroids for 10 months.
I’ve been so exhausted that it was all I could do to get through work. I couldn’t keep up with the chores around the house or have enough energy to go grocery shopping. Luckily a friend came over and helped me clean my house some. I don’t know what I would of done without her.
I’ve been on 5 different medications to treat my IBD and the only one that is working so far(besides steroids) is Humira. I’ve had so many blood draws done and had iron deficiency anemia at one point. Now I have a vitamin D deficiency. I’ve seen three different GI doctors and my current one is now three hours away. I’ve had my diagnosis changed from Ulcerative Colitis to Indeterminate Colitis.
I’ve had to spend a few thousand dollars in medical bills this year along with taking time off of work. Luckily with work I have unlimited sick days but I can’t take off more than 3 in a row before I have to go on short term disability. But the amount in medical bills suck. And I probably won’t be able to really claim any of it on my taxes because of what the income to medical bill ratio is.
And then I’ve dealt with bouts of depression. Which isn’t fun either. There’s times that you get caught up in thinking that this is what you have to look forward to the rest of your life. Countless medications, bathroom trips, shitting yourself, chronic fatigue and constantly battling your body to just live your day to day live.
There’s days that all I want to do is just scream and cry but that won’t get me anywhere. The only thing I can keep doing is trying to take life a day at a time. Be Brave. And remind myself that I am not my disease, no matter how much I feel like I am.