Author: hidradenitisandme

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!💪🏽💪🏽

This picture was taken in Puerto Rico, four years ago to the day. This is me with my beautiful and amazing sister, Lori! There are way too many things, but too few words to describe this anchor, support, friend, confidant and comedian I’m blessed with!!!

This lovely lady has played so many crucial roles in my life! I cannot begin to imagine being without her. She’s someone I can talk to, laugh with and cry too… and I’ve done them all!

Lori has seen me at my very worst physically and been there to help me through, both physically and emotionally. Her presence is so powerful in it’s ability to make my entire soul feel joy, even during some dark times. Some eight years ago or so, I had a bad flare and was very anxious at the thought of possibly having to have it lanced. That, coupled with feelings of, “this is going to be my reality for the foreseeable future”, made me breakdown in tears.😭…. This beautiful lady literally held me until I had gotten it all out, reassuring me that I’d be okay… I’LL NEVER FORGET THAT!

In addition to that, it’s also memorable how she and my nephew(Lori’s son), Devon that I adore, took care of me while I was suffering with a huge and painful cyst on my upper abdomen last June/July. They not only saw to all of my needs, but also provided their customary comedic relief by fussing about what things I needed, should/shouldn’t eat etc🤣….. They’re a blessing!

This journey with HS has at no time been easy, but I’m so very blessed to have Lori Rivera beside me for the ride..❣️

My weekend ended on a good note. I was able to spend some quality time with my eldest sister Leah. We had the chance to talk and watch my favorite Monk episode, “Mr. Monk and the Rapper”. It’s very funny, but I digress 😁….Leah amuses me most and unfailingly makes me laugh, when she meets my sometimes emphatic, over the top or dramatic expressions with a blank stare🤣🤣…I find it hilarious!! I value our sister/friendship.

The picture below is of she and I, on my first outting after fibroid surgery in September of 2016.🥰 She stayed with me the entire day of my surgery, and unbeknownst to me, spent the night at the hospital for my first night 😭. I stayed with her during my recovery. She looked after and took great care of me the entirety of the time… something I’ll always appreciate her for❣️

Sister love is very special. I’m grateful to have her one of my living blessings❣️ ❣️❣️

I had the opportunity to attend a Meet-up with my virtual support group, on mental health and how it relates to HS. It was led by a psychologist. I anticipated attending and wasn’t at all disappointed!👏🏽👏🏽 She touched on the unavoidable byproducts of HS… Depression, Anxiety and Isolation. I could relate to pretty much everything she brought out, from how the depression can manifest more as anger in younger persons (me), whereas it’s more of a sadness or low in older ones, to the effects and fears of sexual intimacy. These are topics I’ve been able to explore in my personal therapy sessions, so it was nice getting that reinforcement.

My mom and sister attended with me, which was also nice. After the presentation, we were able to speak on our individual experiences and share. This was good for me. I realize that as the doctor brought out, sharing and speaking on your life experience, whatever that may be, is so helpful in processing and managing our issues in a healthier way. I look forward to the next meet-up and any and everything else that helps me maintain my physical, mental and emotional being along this path.

I had a dental cleaning appointment Friday afternoon in center city. I’m never thrilled about having to go down there and Friday felt no different. In fact I had grown tired of venturing down there years before retiring in 2018.

Nonetheless, I rearranged my day that would routinely be devoted to my letter writing ministry with friends, and prepared to go to my appointment. Just to digress momentarily, because of its physical and mental drain in prep etc., HS has definitely turned me into what I call, “A One Trick Pony”. It’s this or that, not this and that.

I drove to the train station, parked and caught the train downtown, butt pillow in tow to ensure a “comfortable” trip. The appointment was short and seamless as expected. It wasn’t until the wait for my train back home, in the damp, penetrating, drafty tunnel, that AAALLLLLLL the dreaded and familiar soreness and physical drain from my final years of working, came crashing in😏🙄😖…..I felt like crying thinking, ” how did I go from bouncing here, there and everywhere on lunch breaks etc., to this overwhelming desire to just be home and away from what I at one time enjoyed?”

I regrouped after warming up some on the train, and was then able to thank Jehovah that he’d sustained me to continue working as long as I did with HS. The sun that was shining on my car was also a blessing, as I sat there long enough for those nerves to relax and alleviate some of the soreness. Needless to say…I was all too happy to get home…

Maintaining.. This has often been my response to inquiries about my well being. I’ve found that more often than not, it allows me to honestly convey that I’m neither at my worse, nor at my best. I’m simply striving to manage what I contend with to the best of my ability.

Many people don’t likely give much import to their words or greetings, even when communicating with those they’re in close association with, but for me personally, when I’m feeling sore, tired, unmotivated, frustrated or down, it doesn’t serve my spirit well to cover all that with an “I’m good.” By no means do I stand by with a song and dance at the ready. It is important however, for me to honestly communicate with those who genuinely care about me.

Sometimes being positive is confused with painting or presenting a picture to others for the sake of their pleasure or perception… UNHEALTHY! Living life is exhausting enough without the added weight of doing so for the gratification of others, all the while sacrificing self!

At the end of the day, I want to know and feel that I’ve been true to me! Everything else will fall in place.