Hidradenitis Suppurativa

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 💗

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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💪🏽

I was fortunate enough to be able to have a sisters weekend with my two sisters last week. It was a needed change of pace and scenery. Spending time with the both of them is always a joy, no matter what we do.

I’m especially touched by the care they both took of me, anticipating and jumping in to help with whatever I needed. I’m self-sufficient by nature, but truly appreciate the assistance when my body is uncooperative, primarily due to HS fatigue. And it’s not just what they did(making my bed, fixing my plates, doing my hair) but HOW they did it…never hurried or impatient, but lovingly.

My sisters are a blessing! It didn’t take the past weekend for me to realize this, but it was really nice having time to appreciate it even more 😘🤗

I was able to get out and get some air today. It’s super easy to stay in bed, but a trip to the zoo gave me the chance to get some exercise and a change from my norm.

I chose to have a pic taken in front of the sloth, as it’s the representative for Hope for HS, the support group I belong to. The sloth is a reminder to us HS warriors that we need rest and have to move at our own pace. We do ourselves good to respect both of these realities.

I’m thankful for this day☺️

Random observation…but I find it almost amazing the amount of trash I produce every day. Before all my gauze, pads, underpads and medical tape get used, it’s like this:

Sooo, with the renovation of my bedroom, I needed to purchase a new trashcan. Sometimes I’m mildly amused, but more often dejected by how HS demands that I compromise girliness and femininity for functionality and practicality. So no cute little fancy trashcan would do for my purposes, but I found something that would work. So there you have it.

Long to short, this certainly isn’t a matter I lend a lot of consideration to, but in keeping with the theme of this blog, it is a reality of my life with HS…. Therefore, I share😌