#iamhsaware

I’ve noticed something since joining back into the HS support community. I see a lot of people post about what’s worked to help them and none of the stuff I’ve ever tried has helped me. 

I’ve tried so many things over the years with very little if any, progress. I won’t deny that it frustrates me that I just can’t seem to catch a break but I don’t feel jealous of my fellow HS sufferers. 

I’m actually happy that there are those that have found relief from this dreaded disease. I feel joy when someone in the support groups talks about how they are having good days instead of bad ones. 

Warning! This post includes graphic photos which may not be suitable for those that get squeamish easily. Pictures are of open wounds. 

Now that the warning is in place, let’s get to the update. 

I had surgery twice in December of 2017 on my left armpit and under the left breast to remove hidradenitis suppurativa diseased tissue and for placement of a wound vac. The wound vac was a nightmare and I had to discontinue use after just a few days. Since then, I have been going to see my wound care physician every 1 to 2 weeks. I have been on antibiotics 75% of the time and was on steroids for a month and a half. My wound cultures have come back as Pseudomonas and MRSA. 

I saw an immunologist earlier this month because I’m allergic to so many antibiotics. He diagnosed me with Multiple Drug Allergy syndrome. I had a midline placed in my left upper arm 28 days ago for daptomycin infusions for 21 days. I was hospitalized June 12th overnight for observation and for a consultation with a rheumatologist. I was tested for lupus and other auto-immune diseases but everything came back normal. The rheumatologist offered no treatment since I’m allergic to Humira so he kicked my case back to my wound care physician. 

I went to see my wound care physician this morning and he asked me what my long-term treatment plan idea was. I told him that I feel that we are running out of options and the only thing to do is try to keep the infection under control and manage my pain better. I had the midline removed while I was there and he’s sending me back to the general surgeon to have a port placed after the first of July for another 21 days of daptomycin. 

I also went to see my primary care physician and she wants to get me in to see an infectious disease specialist in hopes of getting rid of the MRSA and Pseudomonas infections. We both agreed that sending me back to a dermatologist would be a waste of time since they’ve never helped me before. I saw enough of them in the past 22 years. 

I had asked about entering pain management but she said that she would like to help me as long as she can. I’m weaning off the gabapentin because it's causing me to have angioedema. She’s given me a prescription for Tramadol to take as needed. Since I have a pretty high pain tolerance, I will be using these sparingly. Plus, I’m sick of taking pills. 

Tomorrow I am starting the auto-immune paleo diet in hopes that it will help me go into remission. 

Now for the photos: First up is the right axillae. It was dormant but has decided to become active again. The problem is that it won’t drain properly due to the scar tissue from the numerous I&D procedures I’ve had over the years. 

Next up is the left axillae. This one is actually doing quite well for the most part. This was wide open from front to back after surgery. I’ve just got a couple of holes that just don’t seem to want to close. 

Now for the problem: Under the left breast. It’s better than what it was after surgery but it’s stopped healing. I have hyper granulated tissue and this is where the infections are. 

And because my other side got jealous, Under my right breast has decided to open back up in 3 areas. This is along the incision from 2007 when I had my botched breast surgery. It just rips open every so often. 

These are my tattoos. My ink means a great deal to me. I got the fairy tattoo on my left forearm first. I love fairies and I already had my own design of the straitjacket with wings but was afraid that, if I had gotten that one first, I may never get another tattoo. 

The straitjacket with wings is on my right forearm and it is my own design. I spent years perfecting it to get it just right. It has such a deep meaning to me. 

I was going through a lot of personal struggles when I decided to get it tattooed on my body. I felt like I was chained up and the wings symbolize the hope of freedom from the emotional chains.