Hidradenitis Suppurativa

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.

I had the opportunity to spend today with my sisters, and truly feel enriched. Their love is palpable and I’m very thankful for it. While my intention was to join a support group session today, I think it says a lot that it slipped my mind in the midst of the quality time with them. Laughter, conversation and a good meal are simple things that mean so much when it’s shared with those you love🥰.

HS-wise, I’ve reached out for feedback from fellow patients, to get an idea if any of them have experienced flares or the like, related to the Covid vaccine 💉. I’ve heard two bad reactions thus far, oy😒. It is my aim however to be objective if those seem to be one off experiences. We’ll see….

A true friend shows love at all times and is a brother who is born for times of distress.—Prov. 17:17.

This is one of my favorite scriptures and was highlighted as the focus text for yesterday in the attached publication. It is so true and deeply resonates with me. There is no questioning or doubting of a friend like this! I’m greatly blessed to have people in my life that exemplify what a true friend is. They are my true and chosen family… The ones I honestly can’t and don’t want to imagine my life without. 🥰

These are the people that bring an automatic smile to my face, make me laugh, make me feel filled up and full of love, listen to hear not to reply, give me positive reinforcement and so much more! When I’ve had dark moments along this path, times when I no longer wanted to live….their presence in my heart, import in my life, as well as Jehovah’s spirit, has anchored me and helped me regroup…. There’s no pricetag that can be placed on that! I’m eternally grateful 🙏🏽

https://www.jw.org/finder?srcid=jwlshare&wtlocale=E&prefer=lang&pub=es21

I attended my fourth support group meet-up yesterday. It’s interesting to see and hear people from different parts of the globe, who though somewhat varied from person to person, all have the same tried-failed-try again experiences with HS. The group setting encourages sharing products, meds, etc that have helped each person individually. I’ve appreciated hearing about things that I’ll try/look into, as well as sharing what has helped me.

More people than not, I’ve learned, hide this illness or lie about it, even with family and friends. It’s not clear cut and neat, so it’s harder for people to accept it about themselves, let alone be honest or open with others. I understand this fully, but the secrecy and withdrawal can only compound the depression that already comes with having HS. I actually believe this to be true of most personal struggles in life. Everything isn’t to be shared with everyone, but suppressing, hiding or pretending, aren’t sustainable ways of living….for anyone. I’d be in a lot worse shape if I chose to do that…..if here at all.

I do hope to encourage others not to be ashamed because of this hand life has dealt them. At the same time, I’ll strive to remember that I have HS, I’m not HS…..I have HS, but it doesn’t have me!

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“If you awakened tomorrow, with only the things you thanked God for today, what would you have?”

I heard this question posed a few years ago at a religious convention. For me, it drives home the point that though life has many challenges, I should never fail to reflect on and more importantly, thank Jehovah for all the good he does and has done for me on a daily basis!

One thing I thank him for, is the encouraging support, acknowledgement and feedback of those of you I chose to share this part of my life with.🥰❤️🥰 I’m not AT ALL a social media person, but this is more about having a way to show my full self, especially with those that matter to me. So, again, I thank you and I thank Jehovah FOR YOU❣️

So, as one can imagine, I’ve spent a considerable amount of time explaining to people what Hidradenitis Suppurativa is.(short explanation – chronic cyst and boils due to malfunction of glands in the armpits, breast groin buttocks, and for me this includes my left ribcage and abdomen) Also, as it pertains to me, I am in the third and most extreme stage. What does that mean? It means that all my affected areas have scar tissue, openings and tracts underneath the skin that branch out, expanding the areas where cyst can and do form causing flares.

Even with that, the day to day challenge of living with this disease, especially as a woman, cannot be tied up in a textbook definition. Hidradenitis causes my body to constantly produce and drain pus as well as blood in areas where my wounds are deeper…. Constant Drainage! This is one of my biggest challenges. This aspect of HS is inconvenient, uncomfortable – as you can imagine having fluid coming out of multiple areas of your body would be…. but it also has deteriorated my inborn femininity….. That’s the hardest part outside of painful flares!

I’ve spent these 13yrs bandaging, protecting bedding, clothing and honestly morphing into something that feels much unlike a woman and sometimes unlike a human at all.

Having said that…. The below are pics that I can share to give a visual for better understanding:

Thank you for allowing me to share. Being open and honest with those I love and I know love me is part of my coping mechanism… Thank you again ❤️

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