Day 9 update – Changes

It’s been 9 short days since my surgery and I am happy to report I am feeling better each day. My arm did give me a scare Thursday, though. I had a rash going down my arm, there was a black spot in the wound not going away, and the drainage was changing to a darker, thicker yellow. I went to the ER worried it might be getting infected.

When I got to the ER, I dealt with two nurses who didn’t know anything about Hidradenitis. The first one that took my vitals and information saw just HS in my hospital file and thought I had Herpes Simplex. I quickly had to correct her and told her I had Hidradenitis Suppurativa. I asked her to please change that in my file right away! She didn’t know how to spell it and had to ask me what it was. I told her it’s a skin disorder that causes painful boils and bumps in the groin, armpit, breasts, buttocks, or any other area on the body that has hair, sweats, rubs together, or folds. I told her is is not contagious, is not herpes or any other sexually transmitted disease, and that there is no cure. She left the room for a minute, my guess to look it up, and came back and took me directly to a room. She has very understanding and nicer to me after that pause out of the room.

The male nurse that came in next had the same questions and didn’t even believe that I was laying in the bed with 9 open wounds until I showed him. I told him about Missouri and other states recognising this week as Hidradenitis Awareness week and encouraged him and his colleagues to get involved in that. He was very nice and understanding and I am glad I got him interested in learning more about HS.

I saw two, ER doctors after that who knew all about HS (thank God) and got the surgical team to come look at me. The black spots were just slight necrosis (dead tissue) that I was told was normal and will heal just fine as it was minimal. The surgeon actually said I was healing very well for just one week post-op and said, unfortunately, HS surgeries drain more and take a little longer to heal than other skin surgeries. I just have to keep it clean and cover it when it’s draining to soak up the excess drainage. I asked her how long it will take to heal and she said it can take quite a few weeks to start closing up. Basically, everyone’s body heals differently, but I should be just fine in a couple weeks as long as I keep it clean and not too dry. The rash was from the tape adhesive allergy as I thought. I told her I thought I might be flaring on or near a groin site because of being so close to my time of the month. She said, that can happen and told me to call my surgeon’s office if one pops up so he can look at it. I see him again the 22nd of this month.

I am praying so very hard that I don’t get a flare right now! Having the surgery was my way of having some hope for at least a year or so of remission. I know there is no cure, but I am praying for a little break here! Please, God, just give me some time to heal and lose weight! Let me get back to some sort of life again that I can enjoy. Let me feel a little happiness and healthiness, please! All my wounds feel swollen and look a little puffy like they are inflamed, yet the Doctor said I looked so good. I’ll post pictures after my period is over so you can see week 2 or 3 of healing. Not to be gross, but the wounds look like someone blew their nose into the openings and it gets everywhere at times. This is what kinda worried me about my arm, but I learned that is is just called Fibrin. My body is making a scab and this is is just part of healing. Open wounds look way different and gross when they heal than a closed wound. If I had puss coming out of a closed wound, this would most likely indicate an infection. I have no odor to the wounds and no fever or red streaks, I am healing fine.

I think I need to comment about the name change and, soon, a website change. I feel the name Hidradenitis Suppurativa Warriors best fits this page because we are all warriors when it comes to this disease. I have bought the name and will change that here next month when I can afford the $18 WordPress wants me to pay to do so.

I started this site just to blog my journey through health issues I have. I have since decided to change that to include a more Hidradenitis awareness approach. I will blog about my journey, post information about HS as I find them, and will working on having other’s share their stories here if they chose to. I want this to be a blog of hope and awareness. I have a guest author signed up that will be working on her story to share with you very soon. She suffers like the rest of us, so give her some time to get this done. I look up to her and the millions of other HS sufferers out there. We are warriors just like other’s with chronic illnesses. However, most illnesses are highly documented and researched on…HS is not. Do you ever see ads on tv to donate to HS cures, research, or awareness? Aside from Humira ads, that’s all I’ve ever seen on TV about this. I Emailed a local TV station in Columbia, MO to inform them about the Governor signing a proclamation for hidradenitis suppurativa week for June 4-10. I asked if they would like to help spread awareness. You know what response I got? None! I bet if I called about cancer or something like that, they would have called right away. I am not putting down cancer, mind you, I am just saying…we are the lowest on the totem pole and that needs to change.

I want to donate my time to bring Hidradenitis out of the dark and advocate for change. More needs to be done to find a cure or at least better medical treatments. More awareness needs to be brought to not only the average person, but to the medical professionals who don’t know enough about it to treat us. Heck, a lot don’t even know what it is at all. HS patients suffer with pain and embarrassment from the lesions and scars every day. This causes shame and deep depression. It effects every aspect of our lives and there is not enough support for us. There are zero support groups in my area for this and I want that to change ASAP. I can only make phone calls and do things online while I heal, but I am willing to get started and have decided to sign up for volunteer work with Hope for HS.

My husband is a veteran and I am frequently with him when he visits his many doctors for his disabilities. When I informed a couple of his main doctors about my HS surgery and that I would not be able to come with him to a few appointments, they too didn’t know what hidradenitis was. I know a great patient advocate there and will be bringing HS awareness up to him soon. I am sure there are veterans with this too.

Lastly, I am working on rewriting my story in honor of awareness week and will post that tonight along with my candlelit visual from my bedside honoring 4 fallen HS patients and the millions who suffer still today.

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