My name is Elaine Campbell and I live in Florida with my two cats. Sterling Archer and Luna. I am unaware of how long I have had HSP but my doctors estimate somewhere around 6 years. My symptoms were not as severe as they are now and no where near as life threatening. About 10 months ago I was working a full time job and planning on going back to school, when all of a sudden I got tonsillitis that I couldn’t get rid of. Leading up to this, for about 11 months prior to this bad case of tonsillitis, I had tonsillitis 9 times and each time it responded to antibiotics. Well In April of 2016 I got a case of tonsillitis that went away after antibiotics and then came back 3 days later accompanied with a lovely skin rash and some very severe abdominal pain. Urgent care tried to tell me that I had Scarlet Fever and sent me home after an injection in my butt. As the days passed I noticed the rash spreading. It didn’t hurt (at first) and it wasn’t itchy. I looked up Scarlet Fever and saw that it is usually associated with unresolved Strep Throat. (My tests had always come back negative for strep throat all 9 times) I looked at the rash online and red descriptions of what it should look and feel like. There I saw it in black and white: (Scarlet Fever rashes feel like sandpaper) My rash looked nothing like the images and did not feel like sandpaper.
Fearing that there was something very wrong and having new symptoms every day for the first 2 weeks, I called a primary care doctor. Then the fun started. “Ma’am it looks like you have Vasculitis.” I looked at my doctor and said vascu-what? What the hell is that? Then I got scared. I got really scared. My doctor looked scared. So started the long journey of figuring out what the hell was wrong with me. I couldn’t work because I could barely get out of bed, I couldn’t move without my skin burning, the rash at this point had spread down my butt, all over my legs, down to my toes, the bottoms of my feet, and on my arms and hands. The abdominal pain lasted 3 days on and 3 days off. Just like clock work. Each time I’d have a flare it would be worse that the last one. Each time I thought the pain can’t get worse than this and it always got worse. My blood work showed high white blood cell counts and elevated CRP levels. My doctor referred me to a rhuematologist, an oncologist, a urologist, and a gastroenterologist . On top of being severely tired, my joints started to swell and it constantly felt like someone was trying to kill me with a sharp object. I could barely make it out of bed most days and I was basically bed ridden for 3 months outside of doctors appointments. I was in and out of the hospital and begging the ER doctors to admit me every time I went in. They laughed at me, they treated me like a junky, they made me feel crazy. Finally, in June 2016, while at home, I followed my rheumatologists orders to gradually drop down my prednisone so that I would have a flare up in approximately one week. We wanted to do this so that I could get an angiogram and the steroids wouldn’t cause a false negative. Only my flare up decided to come the very next day. I’ll never forget that morning. I woke up in so much pain that I was shaking uncontrollably. I was crying uncontrollably when I woke up. I thought let me run in and grab a prednisone and it’ll surely stop this from happening. I popped it and got in my bathtub. What followed was the worst pain I have ever felt in my life and when I say I thought I would die alone in my apartment in my bathtub, I’m not joking. I really thought this is it. I better call my mom and say goodbye. I was screaming in agony at the top of my lungs. It felt like someone was taking a chainsaw, an ice pick, and a gun and just hitting me over and over again in my abdominal area. I had a bottle of Perks sitting on my bath tray and I literally wasn’t sure if I should take one and wait it out or not take one and find a way to the hospital. I called my mom to see what to do. I was hyperventilating on the phone with her and I kept saying, mom I don’t think I’m going to make it. Thankfully my partner at the time who was out of town, called his mother who is an RN and she came and got me. I was a mess that day. I got to the ER and my blood pressure was 197 over 98. I was immediately rushed back and what happened next changed everything. I will always say that you are your only advocate. If no one will speak up for you, you have to. No matter how bad you feel or how close to death you are. I begged the doctors to admit me. They wanted to send me home with pain pills and pump me up with steroids. I refused! I told them that if they didn’t admit me that I would be back every single day until they did. I called all my doctors and gave them the phone numbers to the hospital and to the doctors on duty. I told them that I felt like I was going to die if someone didn’t do something.
Finally, at the request of my primary care doctor and my rhuemotologist the doctors admitted me. I ended up there for 6 days. I was pumped full of 8 to 9 different antibiotics because they couldn’t find the infection I had. They didn’t know where it was coming from. In just 4 days my white blood cell count had risen from 16000 to 22000. I was swollen from my arthritis and from all the fluids I was getting. At this point my rash was over about 85% of my body. I was miserable and uncomfortable. I was by myself, I was scared, and I literally have no idea how I got through that time. There I met some of the best damn specialists and I owe them my life. Dr. Angel Rosario a Gastroenterologist with Florida Hospital came in and immediately saw my skin rash. He grabbed my shaking hand and he said, “honey, I’m going to figure out what this is.” I remember crying and begging him to help me. I also met an infectious disease doctor who tested me for every damn thing under the moon and even though she didn’t have to she sat with me and talked to me everyday when no one was there. She assured me that we had caught whatever this was in time. She then told me that her mother died from Vasculitis because doctors didn’t believe her about her abdominal pain. The doctor teared up and told me that this was the reason she got into medicine. She wanted to be the doctor that listened.
I was admitted on a Thursday and had a colonoscopy scheduled for Monday morning. I had to drink a gallon of laxatives to flush out my intestines so the doctor could see well enough. I was sedated and when I came to, Dr. Rosario was standing over me with a photograph of my intestines. There it was, the little red dots that had plagued my skin, they were in my intestines. There were thousands of them. They looked like little explosions of anger and rage. I couldn’t believe how tiny they were. I remember thinking, “how could something this small cause me so much pain?” I immediately burst into tears. I knew what it was now. We didn’t know what was causing it, but I had a picture of what it was and I knew it was a major breakthrough. By Wednesday I was discharged and I finally got to go home and sleep in my bed. I thought the battle was almost over. It was just getting started. Over the next few months I had so much blood taken from me that I was beginning to wonder how I had any left. I was on first name basis with my phlebotomist, all the nurses in my rhuemotology office, and all the staff at my primary care office. I was averaging 2 to 3 doctor appointments per week. My oncologist was concerned about my white blood cell count so I was scheduled for an emergency bone marrow biopsy which hurt like a ******. Thankfully we were able to rule out cancer and I got a rock solid diagnosis of Henoch-Schonlein Purpura. Then the medications started. That’s where I am now. Try and fail try and fail. I’ll never give up. This disease isn’t taking me, not while I’m still breathing. lol I honestly have been through hell. I can admit that. I have done chemo, I have done more chemo, I have gained tons of weight from steroids.
But you know what I learned about all this. Like the most important life lesson. Never, ever be too busy to spend time with the people you love. Yes, life happens. Before I got sick, I was constantly moving and not paying attention to people. Not saying thank you, not saying I love you, not stopping to smell the flowers or look at the sky or hold my friends. I take my relationships so much more seriously now than I ever did before. I take my life so much more seriously than I ever did before. It isn’t until we are faced with the fact that we could actually die from something, that we realize, Oh shit, I should eat that cake. I should kiss that person. I should love harder and deeper. I should go back to school. I should do whatever I want right now because I really might die tomorrow. This is my story. It’s not the whole story but it’s a snapshot of it. It’s what I could muster up with a box of tissues next to me and a dying laptop battery.
-A grateful to be alive goddess