Author: hidradenitisandme

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

For the past couple weeks I wanted to do the following: 1. Get a bag of ice from chick FIL a.(it’s my favorite) 2. Get the always sold out on Instacart, Cheetos Paws from Acme. 3. Get my flu shot. (scheduled this for next week)

At face value, none of these may seem like a big deal, however getting them accomplished despite the draining effects of HS makes them huge! Tuesdays and Thursdays I’m up and dressed to participate in my ministry on zoom, and for the past couple weeks I’ve told myself I would set out on one of those days after service and get these things done. It never happened. For the most part, any task or outing that follows my morning bandaging/clean up routine is it for me. That includes doing my ministry online.

Well, refusing to put it off anymore, I was able to get my ice this past Saturday while headed home from my parents anniversary lunch. And today, after my ministry, I pushed myself out the door, and got my little items from the market and mailed something at the post office.👏🏽 My errands, household tasks etc may be carried out piecemeal, but that’s the best way I can do it and I’m thankful for Jehovah giving me the strength to do that.🙏🏽💪🏽❤️

Yes, an addendum 😊…I also washed my hair yesterday….A FEAT INDEED….YAY ME!💆🏾

Yes, my dreaded gyn appointment was yesterday and I couldn’t be happier to have it behind me! I was ready for it to be over as soon as I made the appointment.

Having said that, it was time for me to go. I was a year past my annual exam and also, I haven’t had my cycle for six months. Despite any dread, as an adult, one has to take responsibility to tend to their health. Fortunately for me, my big sister Leah offered to accompany me. She also drove us to and from, all without being asked. I have the best sisters ever! They look out for me so well😘😘😘🥰

As for the appointment itself, the doctor was very kind, informed and considerate. He said he’s only seen one case of Hidradenitis Supperativa worse than mine. His goal is to have a team of practitioners address and manage my HS to prayerfully get it under control. I’m open to what may prove beneficial. We’ll see what comes out of this.

My day started with my showering, ointment/bandaging routine. Sometimes after showering, while in the process of bandaging, a burning sensation will set in my buttocks. I try to quiet it with my draw out salve and boil ease ointments. Sometimes it helps and sometimes it doesn’t. It eventually worked today. I got out of bed to complete the bandaging for the upper portion of my body and searched for something presentable to wear in my ministry. I made plans to work in person door to door service with my sister Leah🥰

In the midst of dressing, I thought it wise to take a Tylenol to hold me over until I was able to eat and get some prescription Motrin in my body for the typical soreness. Hadn’t gone anywhere yet but was pretty much already exhausted.😴

Dressed, breakfast and meds, now I just had to wait for my dear sister to pick me up. She did so, and having the opportunity to be out in the ministry, and as a plus working with her, made the aforementioned all worthwhile 🥰😘👋🏽🙏🏽 I was very happy to have put forth the effort, and appreciative that she made it possible.

I came home, ate and sat up for quite a while in my living room. Gauze, burn and foam pads plus pillows didn’t prevent the biting pain in my buttocks once I stood up😖 I’m now in my bed and the pain has abated. Even with the ever present difficulties of HS, I’m still grateful for this day, of which being with one of my beautiful sisters was the highlight ❤️

My sisters and I returned from the shore today. I can’t believe it’s over already.

As always, we very much enjoyed our time together 🥰. I love and marvel at how little it takes for us to have a great time together. I treasure how we love, understand and look out for each other. There are no perfect friendships, but the genuineness and honesty that characterizes ours, is priceless. Easy meaningful conversation, complete trust and many laughs 😄.

How cool it would be to be able to leave HS on the shelf while vacationing, but that isn’t possible. In the face of the challenges it presented, my beautiful sisters saw to my comfort and convenience to the best of their ability. I LOVE THEM SOOOO MUCH!

My heart is full with gratitude for these ladies😘

It’s a no go…Dr. said Prednisone has too many negative effects for any consistent use, including suppressing the entire immune system.. She’ll provide it if I flare, but that’s it. I understand, but it’s disappointing nonetheless.

She suggested Humira… Drug that requires injections.

There you have it….the struggle continues 😏