Author: hidradenitisandme

It’s really awesome when you have a getaway that proves to be all you hoped and prayed it would be. A few days by the ocean with my sisters and friends was truly needed.

We talked, ate, played games and simply took advantage of some time away from the day to day. My focus was to use that time to do exactly what I wanted to do. I hung out and went out, but I also rested when needed. Sometimes we allow ourselves to be pressured to do what everyone else is doing…NOPE, I wanted everyone to walk away having done exactly what their heart desired on their vacation! This made for a great getaway! I didn’t want it to end, but will simply look forward to the next time🥰

I made plans with someone in my new congregation, early this week to do in person service and lunch. Since that time, I was debating whether or not I would do today’s Sunday mtg in person or on zoom.

After an enjoyable and fulfilling day yesterday and thankfully not feeling worn out, I decided to prepare to be in person. Meanwhile, I also put an instacart order in so that I could make some white chicken chili… something that I had a taste for, and figured could stretch a few days. I chose the 11-1 timeframe for delivery, thinking that it would likely arrive in time for me to receive it and make it to my mtg on time.

….so there’s the backdrop and here’s how things turned out.

First, my night wasn’t at all restful. I tossed and turned for a good part of the night/early morning …. Hot/cold, adjusting and readjusting the pillows I sleep propped up on etc.🙄 I awakened feeling that I may take the zoom route, but yet and still, had a desire to go in person still with me.

I got up and proceeded with my customary prep, just in case I decided to go. It looked as if my grocery order would come in time for me to do so. In the midst of watching my tracking, I see that my order was reassigned and would now be coming at the time I would need to be leaving. My sister Leah text me around this time to check my status. I told her I’d likely be staying home due to the instacart hiccup.

While laying here calculating how much time I’d have to get fully dressed if my delivery were to come in time… The tracking app all of a sudden changed to an ETA of 6 MINUTES! My mtg starts at 1 and it was only six minutes after 12…. At this moment I felt like Jehovah was saying, “I want you to go.”😮

I quickly got up to finish dressing, brought my groceries in and made my way to the hall. IT WAS GREAT BEING THERE!!! The discourse and association were very enjoyable.

I arrived home and started on my dish right away before the motivation and energy slipped away. It turned out well.

I know Jehovah allowed this day to go exactly as it should have. I remained prayerful about what I should do, and he worked it out. I must say and highlight  the icing on the cake for this day were the very encouraging words from my sister Lydia. “Thanks for allowing Jehovah to help you be used as a hero to us and many others.”

I don’t consider myself to be a hero, but those words of encouragement definitely gave me extra wind to fly to and through another day. A seeming comedy of errors turned into a good day….. I’m thankful🙏🏾

Met a friend for lunch in center city, shared in my ministry online, had people come do cleaning in the house, did my online shopping for household groceries, caught up on zoom with my out-of-town sister, went in person to my mtg today and fixed a pot of soup after…….

In between what’s stated, is the receiving of package deliveries, room tidying etc. Even though I’m noticeably more tired than usual, I appreciate Jehovah giving me the strength to keep living instead of simply existing.

As for stand out moments, it was really something to go to what was once my favorite restaurant (Maggiano’s) after sooooooo many years since I’d been there. It was honestly a weekly lunch spot during my working days. Those that knew me always suggested and even treated me there for countless lunches.😊  My family and I would even go there on a whim. Those were days of my zipping all around center city. The below pictures however, are the Loni of today, standing on her old stomping grounds,(waiting for her Uber)anticipating getting back home…lol

And fun fact of the day, well not really fun, but a fact nonetheless 😆 before today, I hadn’t made soup since early on during the pandemic. Back then I was making it quite a bit. Today’s soup was a chicken/turkey vegetable soup. It turned out pretty well.

So what’s next on the agenda? Me bidding you all a good night on this lay-low-Monday eve.💕🙏🏾😴

I believe that strong friendships/relationships depend much on growing/evolving with the other person. Being reasonably intuned and in touch with the goings-ons, changes and developments in the other person’s life, largely impact how effective we are in showing up and being available in the ways that matter to them.

It’s understandable that we all have various responsibilities, challenges and obligations.. that’s life. That being said, when it comes to the relationships that really matter, I believe that effort to be and remain connected isn’t optional.

These musings came to mind when someone expressed to me that they felt a disconnect between us and didn’t know why. I was able to think of many reasons, but it wasn’t the time to speak on it. 😉

HS, as indicated on the title page of my blog,  has turned me into an altered version of a me that I never knew. 27 is a relatively young age to have your life hijacked by chronic disease, particularly one like HS that has turned my entire life upside down. I remain close to those that have in one way or another been connected and aware of who I am now. I also to the best of my ability, work to make sure that I don’t allow this ugly, life impacting disease to be an excuse for not being present and available for the important people in my life. Prayerfully I can remain consistent in this regard.🙏🏾

Today was nice. My Lori and I went to the hall where my little brother was giving the talk. It was great seeing them as well as our aunt, uncle and other friends.

We went for lunch at one of our old diners we used to frequent, and then came home. Being able to get up, get out and go was a WIN… I’m thankful.

I also appreciate my nephew that saw to me looking right before leaving out the door.😚 I’ve shaved my head, and he saw where some patches of hair needed to be removed. I protested not wanting to make my sister wait since she was picking me up, but I’m thankful for him looking out.💗

It’s mentally beneficial going in person to the meetings and in the ministry when I can. Obviously I’ll need to utilize zoom as well, however I’m going to keep it going for as long as I can. To that point, I came up to my room after getting back home today, and pulled out several items – boots, bags, stocking tights and clothing that I can wear the upcoming weekend in service and to the hall. This is a HUUUUGE help in getting me out the door, so it’s never too early to prepare.👍🏾 That’s my other big accomplishment of the day.🙏🏾❤️👏🏾

I’m so happy to have made it to the beach with my sisters! I’ve been wanting to smell, hear and see the ocean for some months and I finally made it!🌊

I was thrilled that my sisters and I were able to spend the past few days at the shore. We rented a place and hung out together.🥰 Having that uninterrupted bonding time with them was great!

The weather was warm and dry, which was an answer to my prayers.🙏🏾 Yesterday was the warmest day, so we decided to go to the beach in the afternoon. I honestly thought about skipping the beach and just lounging, we were all probably in need of just an additional few days to do nothing, but we pushed through and went.

This body makes it hard to get going, but I felt like I told HS “NO”, and followed through with my plan. I’m thankful for the support, assistance and love of my sisters. They made this getaway what it was. I’m blessed to have them❣️

I likely don’t need to mention if you have followed my blog, that the first order of the day for me is my shower. That being followed by my bandaging, I always have a good amount of trash to clear from the floor and bed. That includes underpads and other items I use on a daily basis.

I typically move/get things cleaned up and done pretty slowly, which I’m fine with… As long as I eventually get it done.

Well today, I hadn’t gotten back up after performing my hygiene routine, before it was time for my telephone appointment with my therapist. In the midst of the call, my sister Lori, swoops in, armed with gloves and cleaning agents, collected all my trash and disinfected my floor, dressers etc. before I knew what was happening!😆

Yes, I protested because I don’t ever want to be an extra item on her already full plate, but I also can’t help but to be so deeply touched by her amazing self sacrifice and love for me….. She’s really something and I’m blessed.🙏🏾

Oct 29th dermatologist appointment to discuss possible biologic infusions….see if something out there can help me

Stay tuned…🙏🏾

So how about a very patient, yet threatening bully, waiting for the time he’ll attack you. You don’t know when, you don’t know what the extent of the damage that will be done, but you strongly anticipate and fear that it’s imminent.

This is the best way I can describe my experience and the flare/developing flare on my stomach for the past FOUR MONTHS! Yes, four months.😕

About mid June, I began to notice a hardening next to and extending below an older flare site that leaks constantly and that I have to drain when it gets backed up throughout the day to avoid discomfort. Up to this point I hadn’t had any problem draining the site, but now, to press this area felt like a hard mini panel of plastic or something had been slipped under my skin and noticeable sensitivity. 🥴

I soldiered on, praying that it wouldn’t develop into anything crazy, but still anxious that this wouldn’t be the full extent of it.

July comes and goes, and while the sensitivity has changed the way I have to drain the former site, the area still is pretty flat. Around the end of August, I noticed that the “hard panel” now has a puffiness over it. OY VEY!🫣 The bully is just about done taunting me and is now ready to make his move.

I proceed with draw out salve, tee tree oil and hot showers in order to coax it to a head. By the end of September I had a full grown egg shaped flare on my lower right abdomen…yeah.

Despite the anxiety that this causes, I proceed on and try to go about my days. I continue to pray that it doesn’t become like flares I’ve had in the past, and I also remind myself to be thankful that I hadn’t had any pain accompanying my bowel movements at this point or pain in response to gravity etc.

Fast forward to this past weekend. I spent a few nights with my sister Lori.🥰 I feel and realize her connection to, concern for and awareness of my situation. It’s for this and other obvious reasons that I was very unhappy to awaken at her place Monday morning with pain upon standing in the flare site.😥 I didn’t want HS to interrupt the time we had together.

I didn’t tell her immediately about this development, but I didn’t have to. Her awareness caused her to hear the slight sound of my pillbox.(She’s amazing.lol) She said, “what’s going on with your body Loni?” I hesitantly told her. She made me a concoction of tea that included fresh parsley, thyme, garlic and ginger that I drank that night and Tuesday morning before returning home.❤️❤️

That brings me to today. I’ve continued to treat the site and take pics for my reference, to see if I saw any signs of skin breaking. I’m happy to say that after showering, the cyst is open and slowly oozing. PRAISE JAH!🙏🏾

I decided to shave my head tonight and I don’t plan on going back. I was in my early twenties in the picture on the right…. literally a head full of hair, but my hair is no longer healthy as it was.

Now in my early forties, after having had a period of time when I had to take hypertension medicine (known to damage hair)and I guess just with getting older, the splotchy spots were getting larger and my ability and even willingness to manage my hair have greatly diminished. HS of course plays a big part since it has impacted my range of motion, where even reaching up there is challenging.🙄

…….Sooooooooo, how bout we make life a little easier? This is the new me, and yeah..I like it! ☺️

Sidenote: My sweet sister just called me after I sent her the picture to make sure I was ok…🤣🤣. I assured her I wasn’t in a life crisis..lol