Hidradenitis Suppurativa

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 😏

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 🥰

So, after prayer, deliberation and consultation..haha, I’ve decided to try the medication the dermatologist prescribed me, Spironolactone. It’s intended use is as a diuretic for people with hypertension, however it contains an ingredient that works to block a male hormone that causes HS flares. I took my first pill today.

Further research said that some also experienced a decrease in pain. I will use it cautiously, especially since my blood pressure runs relatively low already. I don’t need ANY extra problems!!!🙅🏾 I’m in the hoping/praying it makes my life easier zone. I just came to the point where I had to give it a try.

I’ll keep you posted.🙏🏽

Today was my first time out of the house in over two weeks after getting over COVID…yes, on top of HS and everything else, I contracted the virus 🤦🏿.

I’m thankfully clear now and also in a much better place mentally after managing all of that. In the moment it felt like too much.

I had the opportunity to get out and spend time with my sister Lydia today. We had lunch, relaxed and she painted my toenails for me.🥰🥰 This had special significance because the day I tested positive, was the day I was going to treat myself to a pedicure.💅.. obviously I didn’t go.

Life has it’s hardships for sure, but there are also an abundance of blessings, and my sister is definitely one of mine. I thank her for a good day 🥰

I finished a jar of emuaidMAX today. It’s an ointment that my aunt purchased for me. There were good reviews on Amazon from those that said they had Hidradenitis, and she brought it to me last week. The one ounce jar is expensive.

I focused it on my buttocks since it’s my most challenging area. I didn’t notice any change. It’s important however, to be open to the possibility that something may help, even after a number of letdowns, so I don’t regret giving it a try.

Hope is essential in not coming apart with HS. To that point, I went ahead and ordered another ointment I saw on Amazon, that also had good reviews. I’m appreciative of my aunt waking up the HS vet in me😉, that after fourteen years, sometimes forgets to try something new. You get so use to the, “it is what it is” feeling, that everything can seem like a waste of time.

Beeswax and propolis magic salve is next on the list, due for delivery tomorrow. We’ll see🙏🏽