Hidradenitis Suppurativa

Will Always Lovvvvvvvve This!! 👏🏽👏🏽👏🏽👏🏽😉😉🥰🥰

I took this pic almost three years ago to the day. My sister Lori and I were invited to accompany some friends to their timeshare in the Poconos. It was an enjoyable and relaxing time aside from a couple hiccups in getting lost and the salespeople of course. 😉

With the past year making it unsafe to travel (and in my opinion with it still being unsafe) I’m appreciative of the memory of this day/weekend that flashed up in my timeline today.

Here three years later, I find myself preparing to vacate my room for renovations to be done over the next week and a half or so. I’m glad it’s being done, but when you have a bunch of “stuff” to move and more than everything, have to be displaced from your sanctuary….the one place where you can get completely comfortable, it’s daunting. Nonetheless, I’m thankful for the help from my sister and nephew as well as my sister Leah, allowing me to stay with her during this time.

Perhaps next year this time I’ll be visiting my friends in GA, be on a beach somewhere or in Europe.🌍 But for now, in this moment, I’ll remember to be grateful and anticipate the completion of my favorite place….my room🥰

Remembering my dear Neph’s, James Devon’s graduation from LIM in 2017.

This little boy of my heart/27yr old man, has proven to be a blessing to me in many ways! He not only looks out for me in practical ways such as bringing me a meal or my laundry, but he checks in to make sure his auntie is okay mentally and emotionally. He has character, depth, perception, honesty and authenticity that many two and three times his age have yet to attain.

Love him beyond words…

Physical maintenance is a must with HS. As mentioned in previous post, it’s the bandaging, pads, ointments etc…but having to deal with my monthly cycle on top of that….Ummmm, yeah🙄😏

This feels like too much to manage sometimes. Quite frankly, too much stuff coming out of too many places! 😠 I feel like I want to break out running at top speed in hopes of outrunning this body I’m presently in.

This is an impossibility, so in the moment, my mind often does a search of sorts… looking up, down, right then left…. In a way, looking for a way out, but for now, there isn’t one. Living in the moment is best, but at these times I think.. another day, week, month, year of this? That’s definitely not productive. So instead, I’ll close my eyes, be thankful that I got through the day and look for a better tomorrow.

Five years ago this week, my family and I took our second, of what would become our annual Ocean City, NJ trip. We would rent a house, pack our vehicles, and enjoy a change of scenery for a few days at the shore. I miss doing this since the interruption of Covid.🙄

Below is a picture I took of my father at the rental home where we stayed that second time in May of 2015. Though different in many ways due to dementia, I’m able to see in him where a lot of my strength and determination come from. Heart attack, abdominal surgeries, brain bleeds etc., haven’t taken away his overall positivity and ability to push through despite.

Be it environment, genetics or both, I’m sincerely appreciative for my father’s influence on me. There’s no doubt that it has helped me face not only HS, but life challenges overall.

I’m grateful.

Today I’m grateful. Most people dread Mondays, but it’s my anticipated, low-key day of the week. It’s the one day that doesn’t require my bandaging/dressing routine. 👏🏽👏🏽
I attended a support group session yesterday, the first of which I didn’t find enjoyable or helpful, but despite that, I was touched that my dear sister-friend, Leslie, signed on with me to support.🥰❤️🥰 She’ll join again for one of the future meet-ups. I was also able to take a ride and have some time with my sister Lori, which is always great!🥰🥰

This past Thursday I had an enjoyable therapy session. We discussed my goal to actively seeing my HS wounds and scars with a better perspective. Acknowledging that they are there, but not allowing them to negatively color the way I see my physical body as a whole, or creating self-imposed limitations on myself. This will likely be a continued work-on, but I feel good about the fact that I’m making forward strides in this regard.💪🏽💪🏽

It escaped me, that May is Mental Health Awareness month. It’s meant to create an atmosphere where people can come to understand, feel free to acknowledge, share and get help for mental health issues.

We all have some form of mental or emotional dysfunction,(even those that don’t admit it) be it a chemical imbalance, PTSD, clinical depression or something else. The simple but interesting truth that most will acknowledge, is that we’re all imperfect. It’s a consequence of the first man’s sin that he passed on to us. Many however, are much more reluctant to acknowledge that that imperfection includes our mental and emotional function.

Most will seek a doctor for a physiological problem, but ignore and undermine the need for professional help when it comes to the fragile mind.😕 This is largely because of the
stigmas that discourage therapy or the seeking of treatment.

By seeking help in the form of talk therapy for myself, I learned that I have low-level depression and anger. This is largely due to Hidradenitis, but other major life events factor in as well. I’m not helplessly controlled by this, but more aware and better able to combat it’s effects. Finding the strength to admit the need for help, seeking it and then making healthy adjustments in thinking and behavior is well worthwhile.

Happy Mental Health Awareness month! Be your best you by availing yourself of all tools available…. There’s never a good reason not to❣️

This is one of those days. Not a day that I’ve done anything different than most Fridays, but a day when my routine/regimen proves to be mentally and physically draining. My very dear sister-friend Leslie just reassured me that having to awaken daily, with a step by step process in mind is understandably tiring. Friends that simply get it mean so much!🥰

I routinely get up in the morning and shower after setting up my ointments, bandages and medical tape. I use my non-stick bandages for the open sites in my armpits, on my breast abdomen and left ribcage and one abdominal pad over the areas on my abdomen and on my ribcage. My ointments consist of Zinc, Ichtammol, topical steroids and antibiotics as well as OTC Zinc ointment. I apply them to the bandages that go in there designated areas.

Wardrobe…..My easiest pieces and most commonly worn items are my cotton tank dresses and wraps. HS has tightened/limited my reach due to the tracts underneath my skin and scar tissue, so these items that don’t require that I pull them over my head, work best.

I also use padded dressings for my buttocks, for the wounds there as well as to provide some cushion and relief from the painful legacy of a significant past flare……Add in the normal things like brushing your teeth, getting breakfast and fixing hair and makeup, and YES, all of this can be, and today, IS very exhausting!

Tomorrow will be another day. Perhaps I’ll have a bit more pep in my step and my daily prep won’t feel like a cruel military drill….but for today.. I’m tired…

Amazing to think about the pre-pandemic norms that I wouldn’t dream of doing now, such as sitting in a movie theater. Nonetheless, this was a movie (Intruder w/Michael Ealy)🥰 and dinner outing with my little sister Bianca, and some other friends.

It was a great day and I’m grateful for such memories during these present times. Organizing outings like this one is one of the things I’ve always enjoyed doing. It has helped me maintain joy in my life. It’s a rush and a high when I know I’ve been able to bring others some joy. Truly one of the best distractions from pain or sadness, to be able to give from the heart. Be it time, attention, an ear or some tangible gift.🎁 I’m thankful to my parents for having sounded such values down into me. They’ve proved to be invaluable ❣️

This has been a good day. I was able to spend the morning in my ministry, sharing with persons by means of written letter, the real hope that keeps me anchored. This centers around Almighty God Jehovah’s promise at Revelation 21:4. There it foretells the end of all sickness and death. A promise that will soon be fulfilled on earth.

My belief and trust in this promise sustains me and gives me joy…. knowing that one day soon, Hidradenitis and all other sickness will no longer exist. Sharing this with others also plays a large part in my life. I’m thankful that Jehovah helped me get up, bathe, bandage and dress in order to participate in this work today. It’s a tiresome routine, but well worth it! I’m reminded of my mother’s expression that “things that come easy often aren’t worthwhile.”

The sense of purpose and accomplishment I feel is invaluable and worth the fight and push!💪🏽💪🏽