My name is Loni. I'm 44 years old. I've been suffering with the disease Hidradenitis for 17 years now. This blog is my way of sharing what many sufferers choose to hide.
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!
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.
I took the last pill of the prescribed 15 day Prednisone script yesterday. As a result of the increased comfort and mobility it afforded me, I’m praying they I can continue with it. I have a telemed appointment with my dermatologist tomorrow to discuss it.
I’m nine days in on the 15 day course of Prednisone. I believe it’s given me overall relief. I feel I’m able to accomplish more without as much effort, procrastination and discomfort.
Though my rear persist as a notable pain in the behind😉, I feel there’s some improvement there. My observation is that though still painful when standing after standing or sitting for a time, there’s a bit of a decrease in the intensity. I’ll add to all the aforementioned that I hope it’s not all in my head🤷🏾♀️.
Having said that, I’ve been more active the past few days and I’m going to strive to keep that up. I’m also taking the Spironolactone(med that’s supposed to have ingredient that blocks flares) It’s a water pill, so the frequent trips to the bathroom aren’t desirable, but there’s a bigger picture if this can help me live a little easier.
My PCP ordered blood work that showed elevated white blood cells and elevated inflammation markers. She’s pretty confident that it’s all because of HS, but I have to do more labs next week so she can have another look. She also wants me to have a chest x-ray to make sure nothing is going on that would contribute to my weight loss. I’m at 111lbs and clueless as to why I’ve consistently been dropping weight 🤔🤨
I’m thankful for today being productive for me. I changed my bed, wash and dried clothes. My activity plus the Tylenol pm I took a couple hours ago, will prayerfully give me some sound sleep… We shall see🙏🏽👀😴
1. Started the hypertension medication that’s supposed to block hormone that causes flares. Started experiencing lightheadedness about four days in and stopped it. Lightheadedness persisted. Began to think my sinuses might be the cause since I also had some congestion. After a couple doses of the sinus decongestant, the lightheadedness went away. I’m going to consult with my dermatologist about starting the hypertension medicine again.
2. New dermatologist gave me a script for Prednisone at my request. I’ve read about HS patients getting relief from steroids. They were never granted or presented as an option for me. I’m fully aware they aren’t a long term drug, but I’ll be happy with whatever relief they give. It’s a fifteen day course she prescribed. We’ll see how I respond. Me being me and over planning for the future, wanted to wait until a week before my sister’s getaway in Sept to start them so that I’d be feeling my best.(Anticipating that the Dr. may not give me a refill) I know,,, overthinking as usual. Anywho, my Lori reasoned with me on concerning myself with today and not delaying potential relief. Having said that, I’ll start them in the morning.
3. Tomorrow will be my first time going outside in my ministry. Through the pandemic up to now, I’ve been exclusively on Zoom. I’m going to do a little walking for starters to build my stamina. This may also help with some minor numbness I’ve been having in my feet. My doctor believes it’s because I move/lay exclusively one way to avoid agitating HS wounds. I’ll have to see how I can address this the best way. I also have to have blood work done to check into my weight loss.
4. Hope for HS meetup tomorrow. I’m looking forward to that as usual. I had a great venting session with my therapist last Monday, but it’s still helpful to be able to interact and converse with fellow HS sufferers.
So that’s that at the moment…if I think of anything I missed, I’ll let you know 🥰
Hidradenitis Suppurativa 