The Worst Part

My Crohn’s disease has tentacles. Hidradenitis Supprativa and Psoriasis are the biggest appendages, followed by fatigue, nausea, joint pain and depression. Any one of these things can take me out at any given moment. Sometimes these tentacles are worse than the Crohn’s itself. 

I have been in clinical remission from Crohn’s disease for the past two years but I still deal with one or more of these side items every day. Every single day. It is exhausting. 

The worst would have to be Hidradenitis Supprativa otherwise known as HS. I would advise that you not google what this looks like. I’ll just tell you that it can cause large pockets or tunnels of raging infection, typically in places that you sweat, such as your underarms or groin area. There really isn’t anything I can do about these things beside wait them out when they occur. Nothing in my body ever wants to heal because of the immunosuppressant drug I am on, so sometimes I deal with these extremely painful abscesses for a couple of weeks at a time. They are always there, waiting to become inflamed. 

The other worst tentacle would have to be the Psoriasis. I have this weird type called Guttate Psoriasis that causes these red itchy spots and dry patches of skin. It can be triggered by strep throat. The last time I got that, my skin was spotted for about two months. Again there isn’t much to do other than UVB light therapy to make it go away. It just has to run its course.

Both the HS and the psoriasis were drug induced, caused by the Remicade infusions I take every six weeks for the Crohn’s. It’s an enigma because Remicade is also a treatment for those two things, yet it caused it in me. That is the fun of autoimmune disorders. The puzzle keeps adding new pieces.

The worst part is the fatigue. It doesn’t matter how many hours of sleep I get at night, I still wake up feeling unrested. Before I got my diagnosis I couldn’t understand why the hell I was so tired all of the time. Two naps a day didn’t even help. My mind kept tricking me into thinking I was just being lazy. Sleep in the only time my body gets a rest from fighting itself.

The nausea is the worst thing. It usually hits me first thing in the morning, but it can happen at any given time and it is incapacitating. I have been to the emergency room more times for uncontrollable nausea and vomiting than for any other reason. 

The joint pain is becoming the worst part. This is the newest development in my list of ailments. It began with a bit of weakness in my hands. Then my elbows began to ache. The pain has now travelled down to my hips. It seems to have eased up since my infusion last week, so I imagine it will begin to hurt again as the medicine wears off.

The worst thing about it all is the depression that follows. How am I not supposed to feel mentally overloaded with all of these things? Sometimes I feel sorry for myself and for my children that have to watch me suffer at times and the realization that this is a lifelong deal. Pain is a very lonely island to live on.

The worst part is all of it. In waves and bits and pieces. I don’t write this to get sympathy or attention, I would find less embarrassing things to talk about, believe me. I don’t know why I write this or anything for that matter. I guess I wrote it for someone that needs to read it and realize none of it is their fault. Probably that someone is me.