Author: hidradenitisandme

I try to avoid any activities on Wednesdays, so as not to take energy I need to attend and be alert for my spiritual meetings. Though this is the case, I did have a dental hygiene appointment this afternoon in center city.

Today was actually the day I rescheduled it for because of not wanting to go downtown some weeks ago. Even though I awakened already anticipating my return home, it was a quick and painless task.

Afterwards, I stopped by my sister’s home, ate and spent a little time with both my sisters. My body was well ready to be freed of my clothing and bandages, but I was able to power through and be in attendance on Zoom for this evenings meeting. All in all, the day went well.

Last night was one of those nights where not resting sound proved to be more agitating to me than usual.🙄 I appreciated seeing this very pertinent scriptural text and comment for today. It kept some of my frustration at bay……. emphasis on SOME..😉

Though I now contend with this insomnia and Hidradenitis as a certain contributor, Jehovah most definitely helps me endure, and will soon takes both of these trials away from me! My thorns in the flesh will be gone! (Isaiah 33:24)

“Don’t Dress Rehearse a Tragedy” Wise words quoted to me by my dear nephew-son today. 🤗

I was feeling a bit mentally tired out by my to-do list for the day. Granted, it encompassed more than a typical day for me, but his words put it all in prospective….one task at a time.

I think being retired for almost four years now, coupled with managing HS and the mental/physical fatigue that results, makes me sometimes manage my life in a finite way. As was also brought out by my nephew-son, balance is necessary, something I’ll try to be more mindful of. ……I appreciate him🥰

Sharing in my ministry, getting some errands run and getting my parents and aunt out for some sun and air contributed towards a good and productive day. I’m thankful for the God-given strength to accomplish those things.

I now find myself delaying trying to settle in to sleep being that it’s only 9:30, and my body will awaken me like clockwork in two hours. Daylight savings has added insult to injury. As of late, I’ve been trying to go to sleep later so that I can be closer to morning hours when I awaken. After the first two hours, I’ll be awake two or three hours, go back to sleep, awaken again etc. I honestly get more physical activity at night, than I do during the day(.tossing, turning and adjusting pillows and underpads)

Since tomorrow doesn’t require an early rising, I decided to take a Tylenol pm in hopes that it’ll give me some solid REM sleep. I sacrificed my treat of a large cup of ice this evening to help towards the cause 😄. Hoping and praying for the best 😴🙏🏽

Time goes by so quickly. A new week is only a few hours away. This past week was long, mentally/physically taxing from people working in the house to the always unwelcome visit of my cycle.🙄 But I’m thankful it ended on a quiet note.

I look forward to tomorrow, Mondays being my lay low day. I anticipate that the week ahead will be less eventful than last and am hoping to sleep sound and long tonight 😴 Will see what’s in store. Whatever it may be, I’ll deal with it as it comes.

My sisters are invaluable! I had the opportunity to spend this weekend with them and though only a few hours since leaving their presence, I miss them so very much ❣️

There’s nothing like the security that comes from knowing you’re loved, supported and understood without much effort or explanation. The conversation and laughter has left me feeling blessed and enriched. There’s nothing of a material nature that could feed my soul the same way as beautiful quality time with them!

If I had my way, we’d be together all the time. I wouldn’t trade them for anything! They’re certainly counted among my blessings 💗

Sooooo, I give myself at least two hours to get ready for any given activity. By now, you likely realize this encompasses bathing, bandage and dressing. It also includes breaks during the process that help me keep cortisol levels down where they belong.

Well, today is Tuesday, a day I devote to my ministry, which commences on Zoom at 10a.m. What time did I awaken after a less than restful night that included me going downstairs to turn the heat off that my father had set at almost 90?!! 9:20!😱😱😱

I thought there was no way I’d be able to get ready in time! But I’m happy to say that with Jehovah’s help, I made it. This is not without consequence, as it set my nerves on edge, agitating my HS spots, however after some rest, I felt better.

All in all, I’m thankful it worked out. May it not happen again anywhere in the near future 🙏🏽

One of my weekend highlights, was being treated to lunch by my nephew-son Devon. He took me to a place we like in Plymouth Meeting, PA called Redstone.

We were able to get outdoor dining, there was a nice breeze and we finished just in time to beat the rain. Most of all, spending quality time with him proved to be an enriching experience.

I’m very fortunate to have such a thoughtful young man as my nephew. He’s a blessing ❤️

These two words came to mind after an enjoyable day out with my friend.

I returned home after an outing at the botanical gardens and a few misc stops. As I exited my car, the typical soreness was there, and it occurred to me, it always will be🤔💡. Until Almighty God Jehovah cures me of this disease, I’ll always contend with the pain and discomfort of it. However, it also occurred to me that I can’t allow this to stop me from living!

I can’t stop living because my present reality isn’t ideal, and I won’t. There are still joys to be had, despite the challenges. So yes, I’ll keep going!💪🏽

It’s Friday and I had a good morning. With Jehovah’s help, I was able to get up around 8:30 this morning, shower, bandage, dress and grab breakfast before signing on to meet my group virtually for my ministry.

This is no small feat provided I typically have restless nights full of tossing/ turning/propping etc. I always awaken to find my bed underpads covered in blood and pus, with the desperate need to cleanse my body of all the leakage from the overnight hours. This is a daily physical and mental ordeal.

Having said that, I always thank Jehovah for helping me get up and shower so that I can proceed to get in gear for the day ahead. There are very few days when I’m not able to draw from him, the strength to do what I need to do. I’m thankful for this.

After sharing in my ministry, I’m pretty much done for the day..lol. I feel tired but fulfilled. Sometime I say or think, “why am I so tired just after being on Zoom?” But then I remember the lack of sleep from the previous night. So today, after having done what’s most important, I’m back in my bed. Some reading and a nap are the two remaining items on my agenda.

While the limitations placed on me by HS are clear, I still have a joy in my heart from what I am able to do. I’m confident that maintaining focus on the positive will help me continue undefeated as an HS warrior💪🏽