Author: hidradenitisandme

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..,..

These words, found at Ecclesiastes 7:8, are very true of the past 24 hours for me! Not knowing when I’d get relief from the huge boil I unwillingly hosted was a source of frustration and anxiety, as it adversely impacted my daily normal functions.

Today, to come to the realization that it finally had opened was such a relief!!! Some of the soreness and sensitivity will persist a few days, but my joy is not lessened by that.

It would be awesome to be able to say that’s the last time I’ll experience a cyst like that, but reality leaves no room for that. I’ll simply say that it’s great having come to the end or at least end of the hardest part of this flare. There’s quite a contrast between how I felt yesterday and how I feel now! I’m thankful to Jehovah for sustaining me and for all the support of my friends and family 🙏🏽🙏🏽

After about three months now of dealing with a flare on my abdomen that in the past month became massive(4 inches wide and extending out half an inch), I finally see a sign of hope. There’s some skin breakage that will prayerfully soon be the site of what will be an explosion based on past experience with cyst this size.

Regardless of the mess it causes, I’ll be elated to be free of this burden. Fortunately, it isn’t really bothersome when not touched, but going from a laying to standing position isn’t an unforgettable thing😖 gravity allows me to feel the actual weight and sensitivity of the inflammation. That in addition to moving my bowels because of pressure from stomach muscles.

It may be that the powdered zinc I applied yesterday moved things along. I put some more on the area today in addition to draw out salve.🙏🏽🙏🏽

It won’t be necessary for anyone to inquire. When this monster breaks…. I’ll sound the bells…. BELIEVE ME!

It was my goal to devote at least 30hrs of my time this month to my ministry, inviting persons to commemorate the ransom death of Christ Jesus.

Despite an ongoing flare, typical soreness and sleepless nights, I’m very happy to say that Jehovah not only helped me reach my goal, but beyond! I was able to devote 40hrs to my ministry and I’m so happy about that!

Being engaged in the ministry doesn’t/hasn’t and won’t alleviate me of my maladies, but I find it’s been the absolute best way not to focus on them! I’ve enjoyed the enriching association.

I’m so appreciative to my family for their help in this. My sister many mornings has seen to me having breakfast, prepping my smoothies or fixing something to fortify me. My mom has made sure food items I’d likely grab before signing on for service were set out on the kitchen table and gone behind me to put them away so I can sign on in time, and my baby boy, my nephew, checks in to see what I may need. As recently as this afternoon I text to ask him to bring something to eat up to me after service, at which time he told me he’d already begun preparing something 🥰 I’m beyond fortunate and truly blessed!

My 30hr goal remains for the month of April. I’m confident that with Jehovah’s help and the help of my family, I CAN DO IT!💪🏽🙏🏽