Hidradenitis Suppurativa

Disease-a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

Hidradenitis Suppurativa is my disease.

Diagnosed in 2009, I have had this disease since the summer of 2007. So, I have had it for three and a half years.

My first case was in the summer of 2007. I went camping and took my jet ski out to Cheatham Dam. A knot grew on the back of my leg, right behind my knee, and in a matter of two days it was the size of a gold ball and up and down the back of my leg was black and blue. I will never forget how angry the infection was. I was sent straight to the hospital and admitted in. Hooked up to iv's with antibiotics they sent me straight into surgery. During this hospital trip I was in for 5 nights and 6 days. Later, we learned that I had MRSA, a bad case that had spread up and down my leg as the knot had ruptured inside. The pathology report came back saying that it was a "water type" of MRSA...meaning it had to live in water to live. So...the awesome Cumberland River is where I got the MRSA from. Needless to say I will never come close to the "scumberland" river, ever again.

In October of 2008 I had 3 cysts come up. I went to a Surgical Arts doctors office to have them remove, I was referred to them by a dermatologist. He removed three, but when we realized that my body rejected the stitches and trying to stitch the wounds up did nothing but cause more infection. I was then sent to a surgeon, because the places would not heal properly. I selected a surgeon, off of what my insurance would approve of, Dr. Damon Brantely. He was nothing but an angel that was sent straight from heaven by God to take care of me and my disease.

My second hospital stay was in December of 2008. I was there for 6 nights and 7 days as I had to have two cysts removed, the two that would not heal. I was then introduced to the Wound Vac. A machine that I had a love/hate relationship with. I loved it, because it cut my healing process in half. I hated it, because it was painful and attached to me and I had to carry it around everywhere with me 24/7 for 2 weeks. You think a purse is annoying...trying something that is hooked to you! I have since recovered from these two cysts and they have not returned. Dr Brantley was an angel to me through out every step of the way. Prayed with me before my surgery(s) and had the best bed side manners. Nicknamed me shep, mom momma shep, and dad poppa shep. As he seen as all quite a bit.

After this hospital trip Dr. B had then taught me about my disease and I was finally diagnosed. From 2008-November of 2010 I have had more surgeries than I can count. Most of them are in office. A simple 4-5 sticks with the needle to numb the area, a cut with a scalpel to drain the infection and then putting wet gauze in the wound to pack it. Followed with wet to dry dressings 1 to 2 times a day until the area healed, as I had to let it heal from the inside out, because stitching isn't an option. If I had to guess how many surgeries I have had I would say 30 something. Not technically in 30 different places, because cysts are reoccurring. There is nothing more discouraging then having a cyst come up that has already been surgically removed two, three, even four times. But God has blessed me with the best attitude, so I bite the bullet everytime, call up my surgeon, joke my way through the procedure and move on with the day.

In the summer of 2010 Dr. B moved to Fl. On with his life God relocated him and his family. Was I scared? No...not really. Just sad to be seeing a great family friend move. On to the next surgeon is Dr. Heuman, who is another awesome surgeon. Which, might I add, has great taste in vehicles as he recently purchased from Jenkins and Wynne! ;)

This brings us to "hospital" surgery number 3. November 18th, 2010. I went in with three cysts having to be removed-one of which has been removed twice and another one four times. I was put to sleep and woke up with a wound vac. There again was the love/hate relationship. I was sent back to my room and five minutes later Brandon walked through the door with one of the best presents I have ever gotten. A stuffed teddy bear. I know...really? I am 22. It's the little things in life...we named him Charlie.

Brandon was there for every second of my recovery. Waiting on my hand and foot and timing my medicines and getting them to me on time, watching cartoons and Disney movies with me, having coloring contests...you name it, he did it. "In health and in sickness" never meant so much. 11 days after my surgery I got the wound vac removed! Wet to dry dressings everyday. As of today February 10, 2011 I am still doing wet to dry dressings in the one wound that has now had 5 surgeries. That should explain how deep the wound was.

February 3, 2011 was my 4th trip. Just one cyst. This has been the simplest one. I begged Dr. Heuman to do it in the office, because of the medical bills part, but he said that the area it was in was a tough area to be able to get all the way numb, so off the OR I went a few days later. Went to sleep, woke up with a new hole, and let the packing begin. Brandon, was gone but that's ok because like any other time I have every needed someone there for me, momma is to the rescue. Through every doctors appointment every surgery and follow up, mom has been there. And might I add, with a smile on her face. Without her, I'm not sure how strong I would be...i'm not sure how I would have handled certain things. She's been there to let me squeeze her hand when I feel the pain from the numbing shot. She's been there to wipe my tears when there is no where for the to fall but the table. She's been there to help me with any and everything i've needed. She's been and still is here to pack my wounds, cut the gauze, and make some of the toughest calls. She is the best nurse I have ever had, and she isn't even a real one.

Currently I (mom) is packing two wounds a day. Patiently waiting for them to heal. I'm praying that God will just give me a window from April-June to stay cyst free so I can enjoy all of my wedding plans. The engagment pictures, showers, the wedding, and a fabulous honeymoon in Jamaica! 3 months is all I want. Is it in God's plans? We'll see.

There is no known cure for Hidradenitis Suppurativa and it is simply something that I will grow out of. It's inheritated from my dad and my brother shares the same issue, luckily his are not as severe.

I wrote this blog to give myself something to look back on in a few years. To see what kind of process I have made. I also wrote this for my readers, who are our friends and family, that if they wanted to know about my disease they could. To get a better grasp of what it is that goes on with me.

The one thing that gets me through each and every surgery is knowing the person who is holding my hand through every step of the way, Jesus.

"For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41:13

Amanda