First of which, is that I’m closer than ever before to trying the biologic, Humira. I had a HS community meet-up a couple of weeks ago, and it gave me the opportunity to ask others about their experience with the drug. It’s a mixed review. Some had success for a time then it stopped working, some had minimal success with it. At this point however, I’m working towards pushing my dread of daily needle injection aside and see what it’ll do for me.

The ladies I spoke with, credited Humira with helping to dry up the drainage. For me, that would be awesome!! My drainage is constant and I’m so over it! Just the other evening, I took my time to clean my floor as I often need to do because of drainage of blood and pus. I was pleased with my efforts and laid down to rest. I awakened after nodding off, stood up, and automatically heard the drip drop of blood steadily coming from an older wound on my abdomen 😫. Fortunately, I’m now in the habit of putting a chuck/underpad on the floor for times like this. Even at that, it required more cleanup.

This reality lent to some anxiety while staying over with my sister. Fortunately, there was only one accident in the bathroom where there’s tile floor. I was trying to go lay back down after using the bathroom when blood from my buttocks began to splatter on the floor..SMH. At that point I just cleaned up and showered. No returning for extra Z’s like a normal person 🙄.

In the midst of the more recent day to day, I must make mention, of the many unexpected kind words and acts I’ve been a recipient of. My absence at meetings for worship has resulted in very kind outreach from a number of people. This has been encouraging. Sometimes feeling funky despite these things makes me ask myself if I’m truly appreciative. I realize that I’m human, but the mind takes many trips when dealing with such an ugly chronic condition.

Though challenging, I’ve also been trying to arrange more activity in my life. Most of my time is spent home in my room. It’s simply just the easiest place to be. However, I’m aware that I need diversions when possible. Most recently I was able to go out a few times to have a meal with friends and as I mentioned, to my sister’s for a visit. My plan is to keep looking for little ways I can still live and not just exist.

I’ll lastly make mention that I’m trying a regimen of supplements to see if I can get some help there (Vietnamese cinnamon, tumeric, oregano oil and zinc gluconate)🙏🏽. Real talk, there are/have been countless days when I wish I could just not wake up. Wake up every morning to a body encrusted in blood and puss, wake up to bandages and ointments, wake up to decreased energy and drive, wake up to a life completely different from anything I would’ve imagined 15yrs ago… All those things. But when I get a little excitement about a new herb or supplement, it lets me know I’ve made it through that dark moment and will push on to the next…..