Author: hidradenitisandme

I thought it would be nice to watch a movie with my family Sunday to spend some time. Though the movie was subpar, being together with them was a treat ❣️

The fun of criticizing the poor acting and directing, just about made up for what it lacked😅 Really though, it’s most important having those moments to remind me of how blessed I am to have so many quality people surrounding me. I thank Jehovah for my family. For wherever we disagree or even annoy each other at times, our love is real… That’s a beautiful thing🥰

Plate of love

Without the benefit of a backstory, you wouldn’t know why this plate of snacks means so much. Well, here’s why…..

It has recently come to my attention that my anemia has worsened and the effects of that have begun to manifest. This being the case, it’s problematic for me to go extended times without eating.

This is significant because HS and it’s maintenance causes me to move slowly and sometimes just drag. The result is that I’ll sometimes delay eating so that I can bathe, bandage and dress so as to be punctual for my online meetings and ministry.

With this knowledge, my beautiful oldest sister, Leah, took the time and energy to prepare and bring me this nutritious snack yesterday morning to ensure that I was properly fueled… Yes, I was appreciative and touched! I’m so blessed to have her in my life 💞🥰😘

I don’t ever remember caring much about daylight savings time, but now, I absolutely hate the late rising of the sun and its early setting..Hate it!

I guess with age I’ve come to appreciate how much the sun does for our physical and mental well being, especially in these crazy times. And unlike with it’s counterpart, the moon, I’m oddly able to sleep much better during the day.

Oh well, about three more hours till daylight. I’ll try to doze off till then 😴

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🥰