I HAVE TO SAY…

TW: blood, near death

I’ve unintentionally broken one of my goals for the year which was being more consistent reading, writing, and posting. This time I can honestly say, it’s because of reasons outside of my control. As I learned from last year, life happens.

I’ve been having a lot of trouble with my Hidradenitis Suppurativa (HS) and the recovery from the surgery I had. Can you believe the surgery was eight months ago and one of the wounds still hasn’t healed to this day?

Anyone with HS knows that there are a lot of unsavory, uncomfortable, and painful symptoms that can come with it like fatigue, open wounds, drainage and foul smells, headaches, chills, etc. Because of this, I didn’t know something deeper was wrong. Other doctors I saw also didn’t catch it, attributing my irregular blood test numbers and abnormal wounds to HS as well.

At times I felt weak, but being anemic and going through my first blood and iron transfusions, I thought I just needed another blood transfusion. I was in a lot of pain, but again, I attributed that to my HS changing forms post surgery.

It became a STRUGGLE to get myself out of bed. I don’t just mean my mind wasn’t right. I mean I physically couldn’t move without pain. It took hours for me to convince myself to push through it to get up to go pee. I struggled getting into the tub to take a bath. My legs shook when I walked when a few days prior they didn’t. I didn’t know what was wrong with me and I was exhausted and scared, slowly swallowing my pride and moving past my stubbornness and getting closer to going to the hospital like my parents suggested.

It’s funny how God or the universe or whatever you believe in sometimes forces you into a choice when you don’t choose it for yourself. I felt really weak after coming back from the bathroom on January 24th after 6 or 7 pm. I was debating getting in the bath and getting my wound care done, but I wasn’t sure if I had the physical strength. And then I started bleeding. A lot. I was lightheaded and couldn’t get dressed to go to the hospital. I thought it would stop, but it didn’t. After twenty or so minutes, I felt like I was going to pass out and I told my dad to call an ambulance before I lied down on the floor.

The pain I was in was unbearable. I was the weakest I’ve ever felt. I wanted to go to sleep but no one would let me. I was scared I was going to bleed out and die. I’m 26 and I have a daughter. I wasn’t ready to die.

We made it to the hospital and that’s when it clicked I was septic- had an infection in my blood. I wondered how long I was septic for. I felt stupid and silly for not realizing what I was experiencing wasn’t abnormal because of the HS, that it was something more serious that was untreated. Then I felt angry that no one noticed it sooner from my blood work when the paramedics knew right away.

I transferred hospitals by ambulance to go to one with a plastic surgeon in the morning. Navigating and managing my pain was difficult, even though I didn’t have to walk from place to place . I ended up having two or three surgeries and multiple procedures in the span of a week and a half. The entire experience was terrifying and even now I have moments where it’s hard to even think about everything I endured.

I stayed in the hospital for almost three weeks where the food is bland and people wake you up to take medication or clean you up in the middle of the night. I was so elated once I was out, only to be put back in the hospital a week later for four more days because of an infection the hospital surgeon saw developing at my follow up appointment.

I’ve been home for about two weeks now, and have been in significantly less pain than I was before. I still have a nurse come to do at home wound care from the very first surgery I had in July and from the surgeries I had in the hospital, but even that is going better than it had before.

I’m just ready for this chapter in my life to end. I obviously have things I need to work through from the experiences, but I’ve felt better enough to start reading a little and even write this which is progress.