Hidradenitis Suppurativa

I looked at the drainage I had this evening from my HS spots on my abdomen and initially thought, “Wow, thirteen years is a long time of this.” Also, “do I have it in me to keep going with this until Jehovah sees fit to eradicate all sickness?” (Rev: 21:3,4)”How much more physical morphing/decreased range of motion can I have and still function?” Again, these were my initial thoughts/feelings.

I then had the thought, “Loni, yes, it’s been thirteen years of this ordeal, a challenge indeed! However, how is it that you’re still here? Because Jehovah has sustained you, and he’ll continue to do so.” (Phillipians 4:13) This is the mode of thinking I want to work to maintain. It’s a daily exercise, but I have to keep working at it.

Every day is and will be different, but one moment and day at a time is more than enough to manage.

This past Saturday was a good day for me. I rested longer than usual, and then spent the afternoon with my sisters, Lori and Leah.🥰 Two of the most beautiful, quality people I know, and I’m just fortunate to have them both as sisters.

Some simple take out, store browsing, many inside jokes and good conversation was the recipe for an enjoyable, soul enriching time! How I love them so!!

I really want to make sure that we have at least one day of bonding a month. Life gets busy, and time goes quickly, but for me, this is an essential part of my life. Truly can’t wait till we’re together again ❣️❣️

It was two years in June since I last visited my sister’s in GA, a trip I’d make at least twice a year before covid.😏 I genuinely miss those laid back quality visits with my family.

Like everyone else, we’ve tried to adjust to this new normal. Though many of us are fatigued with video conferencing, it does in fact prove to be a blessing. It’s important to maintain bonds and connections despite these pandemic challenges. When people really matter to you, it’s just what you do!

Connecting with my sister’s today, stood out as a reminder of how fortunate I am to have such great people in my life! Simply catching up is enriching when you have friendships built on solid foundations. No bells and whistles needed. I’m thankful🥰🤗😘

‘You’re feeling yucky and gross, but that’s not who you are”

My therapist expressed these words to me today, and I really appreciated them. I was visited by my period a few days ago, and that on top of the constant draining I already experience due to HS can be overwhelming. There’s literally always something coming out of me, and it gets to be a lot to manage when I have my cycle to add to the unpleasantness.🙄

Besides it not feeling pleasant, seeing it day after day presents a struggle to remain emotionally on track. It’s truly a reality that can’t be understood if not personally experienced. A friend and former coworker once told me that as much as he loved and cared about me, the reality is that he’ll never feel what I have to feel. I found his candidness very refreshing. His words were profoundly true.

I was able to express my feelings and frustrations during my session. That’s was helpful and again gave me this great takeaway that I hope to really make apart of me one day…..

An HS warrior’s fight never ends💪🏽👊🏽

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 💗

•