My name is Loni. I'm 44 years old. I've been suffering with the disease Hidradenitis for 17 years now. This blog is my way of sharing what many sufferers choose to hide.
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 🙏🏽
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!
“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 ❤️
The top two are two sites on the right side of my abdomen where flares previously existed. The pic on the left second row is my right armpit. And on the right is my left ribcage and part of my armpit.( You can see some of the drainage and scarring)
I’m specifically thankful for two things today. The first being something that most would likely not give any thought to. I’m thankful, one, that I was able to sofa shop with my sister and actually sit and test the sofas. We ventured out for this same purpose five weeks ago, but because of the great sensitivity and pain in my ……. rear, from a long running flare, I was unable. Aside from this, I typically use a doughnut pillow because of the sensitivity caused by the remnants left from a very bad flare I had three years ago. This most recent episode even made that ineffective.
Soooo, though I’m not 100% back to my base level according to my not-so-new normal, I am significantly better!🙏🏽🙏🏽 The most accurate description of how I felt, was that I was sitting on a porcupine 😖. I’m so happy to be past that!!
Secondly, I’m thankful for the online Hidradenitis support group I recently found! It’s so nice being able to see and interact with people that understand what it’s like to live in the world of HS. I especially appreciate this because so few people that have this disease, at least the ones I’m aware of, who are willing to reach out and connect. Today was my third meeting and I plan to keep attending as part of my overall effort to keep enduring and maintaining my mental and emotional wellbeing, as well as taking the opportunity to share what I find helpful with others.
Today was a great start to the month! I had a wonderful time in my ministry, and can’t help but to be appreciative of Jehovah giving us just what we need at the right time!
Every day is different, but it’s important to take it moment by moment. Having a day with minimal discomfort and being blessed with beautiful friends and great association is a reason for joy and thanksgiving ❣️
My goal is to reach 30hrs in my ministry for the month. Looking forward to more days like this one 🥰
I’ve been away from posting my day-to-day HS experience for three years now. I was largely sidetracked by my venture and efforts to retire, and subsequently be approved for SSD.
I’m thankful for the outcome of both endeavors, now being three years into retirement. Though I didn’t choose this eventuality, and would much rather be healthy and grumbling about my 9-5😃, I accept it as a blessing! I honestly look back in almost disbelief that I was able to push through and work with HS plaguing me. There’s no doubt that Jehovah gave me what I needed to endure.
As for my condition, it persist. Flares still come, pain and discomfort remain loyal companions and the mental fatigue of this life altering disease still take their toll. Despite this however, I do manage to hold onto joy and hope! My faith, friends, family and therapy are all strengthening aids in helping me not to give up and give out!
I’m now 39yrs old and in my 13th year of suffering with HS. Thirteen years as an ‘Altered Version of a Me that I Never Knew.’ Physical scars, wounds – some open and active, some closed and other HS site mutations have lent themselves to a challenging mental and emotional journey… But I’m still here….. Sometimes down but not defeated,…. My fight continues 💪🏽
I’m reading up on surgeries performed on HS. I’m trying to temper the terror I feel at the thought of being hollowed out and left open to heal from the inside out or needing a skin graft, with open-mindedness and the prospect of increased quality of life.
If you have an experience or knowledge about surgical techniques you can share, please do.
There have been significant time lapses between my postings. I hope to become more consistent again, but honestly can’t make promises because of the unpredictable nature of life.
Having said that, I am very happy on this eve of a month long break. I’m taking a medical leave. The thought of not awakening to an alarm unless I so choose makes me so happy!!! No missed trains, long uncomfortable days or having it brought to my attention that my cyst have leaked through my bandages!……yes, behold last Tuesdays lovely surprise..
So, for many reasons, I’m thankful to be getting a break, at least from work. It’s a blessing and I wanted to acknowledge it. Thank you for reading😊
Hidradenitis Suppurativa 