Author: hidradenitisandme

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?

So, today was a little extra challenging. Soreness contributed to a slower pace and even some indecisiveness about going to my Christian mtg. My mtg starts at 12:30 on Sundays. I’ve had a pretty good rhythm the past few weeks of being back in person. I’ve been leaving the house a few minutes after twelve and arriving on time. Today wasn’t that kind of day.

My back and forth decision making had me leaving the house at 12:21, oy. Fortunately it’s only a four minute drive. Once there, I found a seat and twisted and shifted until finding a tolerable position for my buttocks 😓…. I got through.

The second thing on my agenda, was to pick up crab legs for my mom. She expressed wanting some. The soreness in my bottom made me contemplate going home, but I proceeded to the store. After doing a smell test, I purchased the crab legs and some other items and headed home.

Once home, my sister and I both thought there was a strong fishy odor. She washed them which seemed to alleviate that, and steamed them. I cracked one and had a small portion. The next one I was inclined to smell just to be safe. What did I smell??!! AMMONIA! I announced this so that my mom wouldn’t eat any of hers. After no success reaching the store by phone, much to my displeasure, I left the house again to take them back 😠(my Google search revealed that this smell occurs as seafood is beginning to break down) ..sigh.

I’m now back home and glad I got that out the way since I surely wouldn’t have wanted to leave the house tomorrow, which is my rest day. So yes, call it a day! I winced, shifted, twisted and turned with pain today…but bigger than that, Jehovah strengthened me to get through. Prayerfully some sound sleep will result 😴

It’s been quite a number of months since Hope for HS held any meetings or community meet-up sessions. I like attending because it’s a rare opportunity to be in a space with people that understand the multifaceted components of HS.

The mtg this coming Sunday will focus on mental health issues in HS patients. It’s important to maintain a positive attitude with any illness, but it’s also important to acknowledge, understand and face the effects and feelings that come along with this horrid disease. (the link to register if interested is below) Perhaps I’ll see you there.

https://us02web.zoom.us/meeting/register/tZUlf-usqjouH9bSZjR3BMn0iPPxnuL2w-r4

Had to go into center city(my least favorite place) today for a dentist appointment. I chipped a tooth and wanted it to be looked at, so though tempted, I didn’t cancel.

Being that it takes me a long time to ready myself, I wasn’t thrilled that the appointment was at 9:45😒. My plan was to catch a Lyft to and from. It was such a blessing that my awesome sister adjusted her schedule to give me a ride to the appointment. 🥰🤗🤗❣️ Center city traffic is awful, but she willingly dealt with it, so as to make my life easier. She’s truly a blessing and gift that keeps giving.

Happy to be home and have that out the way. On with my week..,..