What’s Next? Moving forward

I first want to thank God, my husband, and all my friends and family for sticking by me all these years while I’ve been dealing with my illnesses. I don’t think I would have made it through without the support I’ve had. I have gone many years without telling anyone that I even had HS. It was shameful and gross to me and I just didn’t want people to know. My mom, oldest daughter, husband, and doctors were the only ones who knew for years. I mean, who wants to hear about puss and boils? Gross. I hid my pain away and, for a few years, replaced the HS and back pain with the bottle. I literally almost drank myself to death. It was my unhealthy way of dealing with the pain, lack of medical care, and the shame I was feeling. I ended that nightmare (drinking) in 2016, but picked it up again in 2017 for only a few months before I said ENOUGH! I am no longer going to be this person! I am better than this! I am going to kick this illness in the ass! God, yes GOD, got me through that dark period. Yes, my husband was there for me as was my oldest daughter, but GOD took my desire to drink away 8 months ago. It wasn’t until my HS progressed so bad in my groin and buttocks November of 2017 that I found a Facebook HS support group. The group and people in it gave me hope. For this first time in 12 years, I was no longer afraid to speak up about my illness. I wanted to bring my illness out of the dark and spread awareness. I wanted my life back!

It’s now been 13 years or more since I first noticed the HS. I say “or more” because I may have had it longer. I can’t remember the exact year I got this. I just know it was somewhere around 2005 or 2006 that I first noticed a boil. I thought nothing of it. I’d never heard of Hidradenitis. My mom was a nurse practitioner for most of my life and I’d never heard her talk about it either. I didn’t tell anyone, not even a doctor, about my boils until the one in my arm got huge and wouldn’t go away in 2013. I was a nurse aid from 2010-2016 and thought I had MRSA. The ER in 2013 said, “Nope, just some bacteria. Here’s some antibiotics and go home.” My diagnosis was just “boils”. The Dr didn’t even lance it. It wasn’t until 2015 that a doctor told me what HS was and gave me a label for my boils. At that point, it was only in my left arm. My groin boils would come and go still. In 2016, the groin boils started turning into tracts and one even got cellulites and an abscess the size of an orange. The ER Dr had to perform an incision and drainage (I&D). By 2018, you could push on one area of my armpit or groin and puss would come out of 3 or more different areas nearby. You can read my story on this blog.

Fast forward to now. I have had surgery to remove the stubborn areas of my HS. There were 9 areas of different sized lesions removed. Some where hiding deep under the skin and not found until the surgeon cut into me. It’s been a long month of healing. I am still healing. My arm still hurts, but it was the worst area and will take a bit longer to heal. I am very very happy to report that yesterday, for the first time in years, I put on underwear and pants with no pain! I can sit, cross my legs, walk, get dressed with no HS pain in my groin or buttocks! It’s also done wonders for my marriage *grin*. No more gross puss and no more boils. I will stress right here that surgery is in NO WAY a cure to HS. I know that I may someday get another boil. I actually have a couple small ones that only pop up when I am on my period. My saving grace is that I now, after 13 years, have a dermatologist and Primary Care doctor who will handle any new lesions (boils, flares) before they get out of hand like these did.

What’s next? Well, I still have arthritis, sciatica, and scoliosis pain I need to deal with. I am already dealing with my digestive issues and have a good team for that. I am able to walk without HS pain, but I can’t walk well with the back pain. My right hip is higher than the left as per an X-ray in 2017. I have a bulging disk in my lower back as per an MRI in 2006 that has caused me to be bed bound or caused me a trip to the ER a few times a year. My upper back and neck are deteriorating as per an MRI in 2013 and fusing together. My right hip and knee cause me great pain at times. Walking up and down stairs makes my knee cap feel like it’s going to just pop out of my skin sometimes. I can be just sitting and have severe right hip pain. Rain, cold, or humidity cause the pain to be worse. I guess it’s true what they say about arthritis sufferers….we can predict the weather lol.

My PCP promised that once the HS surgery and digestive treatment was out of the way, we would work on my back and arthritis issues. “One thing at a time”, he said. I know he wants to find out what type of arthritis I have first. He will most likely send me for another MRI of my back and/or refer me to a neurologist. I do have issues with part of my body or a whole area going numb very easy. This indicates possible pinched or damaged nerves in my neck or back or both. I know there are non-invasive surgeries that can be done for sciatica pain. I would welcome that. I would love to walk without pain. Yesterday, I could only handle about 1.5 hours before I had to go home. That was with sitting to eat for 20 minutes. If I could just walk without pain, I could lose weight easier. The more weight I lose, the better my back and joints will feel. Anyway, that’s next on my list get fixed. Wow, “fixed”. Am I broken? I kinda feel that way sometimes. I digress.

July 9th I will see my dermatologist about preventative treatment for my HS. I am also getting a medical clearance paper to go back to my gym. They wanted medical clearance after surgery before I could rejoin. Yes, I am going to rejoin even with back pain. I think the more I move and strengthen my back, the better I will feel. I know I will have to start slow, but I will get there. The back surgery I keep seeing states you can literally go back to work the next day. It shows a person with just a bandaid on their back walking out of the clinic. They just cut the nerve causing the issue. I am not sure if this will be what my Dr (s) would want, but we shall see. I can only try. I will do what they want unless it will put me in a wheel chair for life..which is where I am headed if I don’t do something now, while I am only 42. You would think I was 82 by the way I talk. OMG this is not how I imagined my 40’s being. Anyway, I have hope. I really do.

I am going to Sam’s Club again today as I promised my husband. Even if I have to use a stupid power scooter. I got this. I really do.

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