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🙏🏽
It’s Sunday evening and I’m reflecting on the weekend. I was able to make it in-person to my mtg. It was good being there.
I came to the realization that humility is an important quality when you’re battling health issues. I say this because, person’s taking notice of my slow pace today was a little bothersome to my ego. I then had to reason with myself and correct my thinking. We all need some help at some point, and I’m no exception.
Aside from that, my mind keeps going back to one of the most encouraging things I’ve had said to me. My cousin told me yesterday, that to him, I’M HOPE! That was so incredibly touching! He expressed that my fight helps him move forward. I’ll carry that with me always.
I know I don’t have to be the poster child for strength and endurance, but it means a lot knowing that my struggle goes beyond me and my world.
I had an appointment with a new dermatologist today. It was telemed. I found it strange not to have received my link by mid-afternoon. I called and was told it would be sent at the time of the appointment.
The appointment was for 4:10. They sent the link at 4:15, that’s fine, but what annoyed me was the simultaneous phonecall asking if I’d completed the consent forms. Really?! I made this appointment a week ago and they’re just now asking me this! They proceed to send a PACKET, that I needed to print and complete before being seen. All this assuming I had a printer since they weren’t eSign formated 😠 oy!
Long to short, the doctor is going to have me try a diuretic called spironolactone. It can decrease a male harmone that may contribute to flares. She also prescribed an antibiotic combo. So again, we shall see. Praying for something positive 🙏🏽
This day began with me being anxious that my car could be towed from the lot I parked it on Saturday. 🙄 I typically never park there, but didn’t have it in me to circle the block again. So this morning, I did my version of hurrying, and went out to move it when I’d finished dressing.(I was pretty confident with it being there Sunday and Monday since it was a holiday) 🤷🏾♀️ Today I felt I might be pushing it.
I was then able to grab some breakfast before signing on for my ministry. When I signed off, the urge to get in position for a nap began to creep in, but I rejected it. I proceeded to put my AC in, empty and recycle my Amazon boxes and print my label to return some unwanted clothing items. For me, that equals productivity!👏🏽
I began to feel sore and decided to have my dinner, take some pain meds and I’m now unwinding for the day. 4/5 o’ clock is the new 9/10.☺️ Who knew this day would come?
Hidradenitis Suppurativa 