I have a consult with a pain mgmt doctor on the 27th.🙏🏽 My goal is to get something for the pain caused by the HS in my buttocks. If they can give me something safe to minimize that, then I’ll be able to live a much fuller version of my life.
We’ll see what they say.
Today marks my five year anniversary of retirement from the City of Philadelphia, District Attorney’s Office!🎉☺️ How the time has flown.
I remain grateful to Jehovah that I was able to stop working as my circumstances dictated. I try to make the most of my situation and look at the various ways that this has been a benefit.
Life is in fact like a box of chocolates😉.. (And sometimes those chocolates are a bit rancid)🤣 however we press on and do our best with what we have.
The sponsor of my support group held a meetup this evening, and I’m glad I signed on. A dermatologist hosted, but it was an open floor setting. We were encouraged to share our story, what we use to cope etc.
I raised the question about pain management doctors and if anyone had gone that route for HS. Nobody had. I expressed how the pain in my buttocks was my reason for asking. I explained to the best of my ability what it feels like. WELL, at that time, one of the other HS patients told her experience that sounded exactly like me!!! That was the best part of the entire meeting!! OBVIOUSLY I’m not referring to another human being suffering, but to hear her say that the HS in her buttocks trumps the pain everywhere else and how tired she is of the wounds weeping and the smells, it was a big deal for me….. actually being in a moment where I truly wasn’t alone…VERY VALIDATING!
I was reminded of what a former coworker and friend once told me. He said that as much as he loved and cared about me and hated that I have this disease, the reality is that he’s still going to go to bed and go to sleep, and live life normally, that he’d never really know how I felt. That was one of the best moments of honesty I’ve experienced because it was so true!
The other reality is that there are people that understand exactly what I contend with, and tonight was proof of that. So glad we both decided to share.
After reading about its benefits, that include helping with skin disorders, this will be added to the natural supplements I’m now using(cinnamon, oil of oregano, tumeric, zinc gluconate and a multivitamin) . I also found a salve on Amazon that has Goldenseal in it. That’s on the way as well.
I had a derm appointment last week. Much of the same offered, outside of a diabetes medication she prescribed (Metformin)for the purpose of controlling blood spikes that can cause flares. I’m using the cinnamon for that reason. Unlike the Metformin, it doesn’t cause diarrhea, vomiting and other gut issues. I’m very blessed to have a healthy gut…I CERTAINLY DON’T NEED TO ADD A MESSED UP GUT TO WHAT I ALREADY CONTEND WITH! No thank you.
I’m going to keep watch on what results I see with the natural supplements. I’m hopeful.
I attended my Sunday mtg yesterday in person. I was happy to get there and even happier to be accompanied by my Lori and Devon. The interactions at the mtg were enriching and the time together in general left me feeling emotionally and mentally satisfied.
We followed that up with a good meal before returning home. It was truly a great day 🥰
I finally cracked open a bottle of Prednisone I’d been holding onto on Tuesday. I was saving it after being told by my dermatologist that it was too dangerous to be prescribed on a constant basis. I wanted to address some inflammation and decided to start the 15 day course.
This will be my second time taking it, and like the first time, it has given me the noticable extra push to do my day to day task. I’m typically a one-and-done girl. Choose one task and call it a day. Not so yesterday. I was able to get myself together for the day, do my ministry on zoom, drive to the mall to make a return, stop for my beloved Wawa ice and take a script to the CVS to be filled! Yay me!
Matthew 6:34 days that each day has enough of it’s own troubles. Having said that, while Prednisone is too dangerous for me to take on a consistent basis, I’m going to take advantage of the boost it’s giving me presently in helping to combat the HS fatigue. Something is better than nothing.
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…..
I wouldn’t want to know what life would be like without my beautiful sisters🥰. This day was one of many examples of just how great mine are.
My awesome sister Lydia was the motivation for me moving this old body out the house for a sister’s breakfast. Our time together in addition to her generous treat were the highlight of my day🤗.
I returned home to find my room straightened up and laundry dried and folded. This was thanks to my beautiful sister Lori.
Third, my lovely sister Leah thoughtfully purchased some popcorn of my choice for me to have for a snack. I feel nothing but full in my spirit from having these wonderful women in my life. Blessings they are for sure.🙏🏽☺️❤️
Today’s goal, against the advice of my sister, was to go to the laundromat to wash some items too big for our home machines. My Lori advised it would be exposure to too many people/germs for my immune system.
As I said, despite this, I was going to go. My plan was to set everything up and wait in my car till done. When I made mention to my mom of my plan for the day, she too expressed that she thought it wasn’t a good idea. At that point I felt I should listen. Two warnings was more than enough for me. Some people trivialize it, but one run with COVID was quite enough for me. I have enough physical challenges.
Since I was already readying myself to get dressed, I decided to give my room a break and sit in the living room with my mom for a while. We watched a few shows and a movie. At a point, I needed a snack. Upon standing, the dreaded pain in my buttocks hit me…OOUCH! Oy, the only pain medicine I had today was half a dose of extra strength Tylenol… Just enough to get me through the morning routine. My mom gave me an Advil, and I took another in addition to a Tylenol when I returned to my room a little bit ago.
Would’ve never believed 24yrs ago, that sitting would be one of the hardest things for me to do……LIFE
Hidradenitis Suppurativa 