Hopeful? Devastated?

I saw my new dermatologist today to follow up with my Hidradenitis surgery and remission plan. Before I get into that, a few things have been going on. I had heavy bleeding half way into my period that sent me to the ER. My fibroids I had 20 years ago may be coming back and I will be seeing a gynaecologist July 31. This explains the irregular, heavy, prolonged, clotty, and painful periods. I also get back pain and bladder pressure that’s worse on my period. They can take my uterus for all I care at this point. I have my tubes tied and four, grown kids anyway. I am done with periods SO SO DONE!

My arthritis and scoliosis pain is getting so bad that I am limping when I walk now. It’s worse in my right hip that is higher than my left and in my right knee. I also have neck and upper back deterioration found in 2013. The pain from my HS and arthritis has made it hard to sleep for days. I am also having restless leg syndrome and hot flashes with insomnia. YAY me. Tomorrow, I see a rheumatologist to find out what type of arthritis I have and get help treating it.

Back to my Dermatologist: She was AMAZING! She looked at every inch of my skin and even my scalp. She said my hidradenitis is still inflaming my left arm and right groin! The friggen places I just had surgery on! She found it starting in my right arm and my right breast. She found yeast in my belly button and HS starting there. I clean my belly button out several times a day! She said it’s hot and my pants sit there, which will cause this issue. I had never had HS there before! The sores I keep getting on my scalp, face, neck, upper back, and chest is called folliculitis (inflammation of the hair follicles). She said it’s in the same family as hidradenitis, but not the same. She told me that for HS that is in it’s advanced stages, they try surgery to clean everything out and then try a combination of antibiotics and biologics. She’s putting me on clindamycin cream for my face, neck, and back and Humira for the Hidradenitis. The University hospital has a wonderful patient rep there who can get my Humira pens in 2-3 weeks or less (normally). She got me an appointment with the pain management’s clinic and I see them this Wednesday at 4pm. This Wednesday also happens to be hubby and my anniversary. WOW, maybe he can have me pain free for a while HAHA.

Why am I devastated? Maybe that’s not the word. I don’t know what to call it. I am sad, mad, and feeling almost defeated with this HS and pain. I drove home trying not to cry. I thought the surgery would help me find remission. I was wrong. I can only look at the bright side, I got the worst part removed and the drugs can have an easier time keeping the HS at bay. I HOPE!

I am also going to get pain management, arthritis help, and gynecological help. Now, I just need to make a call for depression help. Between my husband’s brain injury and my health issues, I am overwhelmed and just exhausted. I am fighting to help both of us because he can’t do it himself. It’s a lot on my plate. I need therapy to handle all the stress. I need someone to talk to, but have really no one in real life TO talk to. My husband is there for me, but it’s not the same. I need a support group with other people in REAL life who “get it”.

I am going to try and sleep tonight and start over at 6am to get to my rheumatologist tomorrow. Stay tuned for more.

2 thoughts on “Hopeful? Devastated?

  1. I saw you on facebook. I have HS also. No one in my family understands or thinks I’m in as much pain as I really am.

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    1. I’m very sorry that’s happening to you. The pain can be intense with HS and I wish other’s understood that. The most important thing to remember is focus on you. You know it hurts. That’s what’s important. Maybe have a doctor write to or talk to the person and explain HS pain to them. Like my derm said, you’re in fire, it hurts, let’s put it out. It can feel like a deep burn on the skin or a shooting and stabbing pain. Sometimes it even throbs! Depending on the size, it can be constant or come and go. God forbid anyone or thing touch the boil or lesion! You’re in my thoughts.

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