Suzanne’s Story

Hi everyone, my name is Suzanne and I’m a 39 year old female from Manitoba, Canada living with HS Disease. I was 26 years old when I experienced my first symptoms, a flare so bad on my inner thigh that I could barely walk.

I had no idea what it was or what I was in for.

My HS diagnosis came approximately a year or so later. How it happened was that my mom mentioned to her dermatologist that I was having a constant struggle with recurrent “boils” and was there anything he would recommend, as I did not have a dermatologist myself. He wrote a note on a piece of paper that had 5 words. Those words were “Hidradenitis Suppurativa-Call for Appointment”. I remember thinking what the heck is that? So I googled it and man it sounded terrible, yet correct at the same time. I then decided it was best to make the call and get an appointment.

I am currently employed at a local family owned tire store as a Sales Support/Billing Administrator. The majority of my day is spent sitting, which is a problem as my HS affects me mainly in the Groin area. The condition has affected my ability to complete work when I flare as I am unable to sit. I have ended up many times in the hospital to have Incision and Drainage, and being enrolled in the local IV Drug Program due to the Cellulitis Infections I have also had. I had to miss a lot of work a couple years back, after problems with one of my HS Surgeries happened.

I had a Sweat Gland/HS Cyst removed from my groin and I continually had bleeding from the area. I went to the hospital as I knew something was wrong and they had to admit me for the weekend until the surgeon could come in and see me. It turns out the incision ripped open, and because it was so deep I needed wound packing. That meant Home Care coming to my home daily for well over a month. Due to my Diabetes I heal slower than a Herd of Turtles.

I would describe the pain from HS as unbearable with a burning, stinging and stabbing pain that comes with every movement. The pain can leave you never wanting to leave the house. The only relief you have is lying down, but that doesn’t happen. My workplace has no idea what HS is. It is a skin disease I speak of when I say I have to go to the Dermatologist. Why would I miss work over a skin disease?

Because to this day I am too embarrassed to tell them that it affects my groin. Embarrassed, Ashamed, and I feel Alone… I often think people must think I have a rash that needs cream on my leg or something. Nobody who has heard me speak of HS has even sounded interested in it. Better yet if anyone actually does find out what will I say? My Family, Fiancé and Best Friend know (I figure after all someone should come visit me in the hospital!).  Either Tylenol or Advil doesn’t help the pain; the only thing that spells relief for me is I&D (Incision and Drainage).

 

Other challenges I’ve encountered living with HS include other health issues. In 2013 I found out that I have Congestive Heart Failure, which was a tough one to handle. Deciding if I should tell my family was the toughest decision I had to make. I did not want them to worry about me, but then the list of my medical problems kept growing as time progressed: Enlarged Liver, Enlarged Spleen, Diabetic with Insulin Resistance, High Blood Pressure, High Cholesterol, Bowel problems, Psoriatic Arthritis, Bi-Polar disorder and Ovarian Cysts (PCOS).

I was told I have Metabolic Syndrome last fall. I agreed, saying there is no way I could have something wrong with each organ. There has to be one thing causing all of this. It wasn’t until the handout I received at the HS walk that I realized this likely stems from the HS.

In March of this year I suffered a TIA mini Stroke, which stands for transient ischemic attack.  It is a brief episode of neurological dysfunction caused by loss of blood flow (ischemia) in the brain, spinal cord, or retina without tissue death (infarction). It is often a warning that a large stroke is on its way.  It’s a blood clot I had in my brain that caused a temporary blockage.  I am now on anti-coagulating pills for the rest of my life.  I always say “I will be okay; I’m one tough cookie”.

Humira is a medication I take to manage my HS, and have been on it for many years now. I also have used Marijuana for Pain Control and have a CBD Cream that I use on Flares. If a lesion is extremely painful I use topical freezing cream that I purchased at the pharmacy to numb the spots. Last week a nodule was found on one of my lungs which means my Humira is on hold until it is investigated.

I also use Dettol Baths with the hottest water I can stand. Dettol is an old fashioned antiseptic solution hospitals would give to new moms to add to the bath water and have Sitz baths. I found out my pharmacy carried it in the first aid section and thought I’d try it. So I will have a bath with a cap of Dettol added to it [it’s poisonous so watch out].  I then apply Vicks-Vapor Rub to the spot, which makes them soften and burst very fast. I also use betadine surgical scrub which the pharmacy brings in for me.  It may look like you’ve been shot, but it definitely keeps you clean!

If that doesn’t work I try to let nature take its course, but if not I am off for Incision and Drainage. Sometimes my Dermatologist gives the lesions steroid shots if they are very painful but not ready to be opened.

There are 3 stages involved with HS but I do not know what stage I have. I’ve lost count of the hospital visits and the number of surgeries as well [I’d guess between 12-15]. I was at the plastic surgeon yesterday and am slated to have another HS Surgery in August or September. If I could grant a newly diagnosed person with HS a wish for their future I would wish for a cure…. and cool weather year round. I would also like to see more public awareness and the opportunity for more funded medical research, better medications and more importantly; the ability to find a cure.

My life would be different if I didn’t have HS. It would be great to be able to use vacation days for an actual vacation instead of being on bed rest or in a hospital room. I’d go south and go deep sea fishing in the heat! Every day I would be able to do physically what I wanted to do. But HS is what I have and without it, I just wouldn’t be me.

I believe that God Gives his toughest battles to his strongest soldiers and so far I have nailed it, if I do say so myself…

 

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