In January I was diagnosed with Henoch-Schönlein purpura (HSP) vasculitis. What is HSP-Vasculitis, you ask? Basically, it is an autoimmune disorder that causes small blood vessels (usually those associated with red blood cells) to become inflamed and bleed. It is most common in males prior to age seven. So, how did I (a twenty-something female) get it? Well, I’m just super lucky… We actually aren’t 100% sure what caused it; but we think that a bad case of strep, that resulted in step colonizing in my tonsils, made my immune system freak out, culminating in HSP. That is the short version, read on for more details.
I really struggled with what to name this post. Should I title it “My Battle with Vasculitis” or “My Journey with Vasculitis”? Obviously, I decided to use the journey version. When I thought about it, I realized that although this is a battle, one that I’ve been fighting very hard, “battle” is too negative a term. Look at it this way; if I fight a battle for months, it seems never-ending and bleak. If I go on a journey for months, there seems to be room for positivity and light at the end of the tunnel. So, get ready to hear about my journey (that includes some battles) with vasculitis.
Seriously. This disease has brought about some of the toughest moments in my life. There have been days when I have been miserable, curled up in pain, bawling my eyes out, wondering if I was dying. There have also been days when I laughed about limping and happy-cried because I felt so blessed to a great support system. I could probably fill a lake with the amount of tears, both happy and sad, that have been shed since December.
So what exactly happened?
Let’s go back to December 22, 2015 when I noticed that a bump on my arm was not, in fact, the acne that I thought it was. It had grown and more had popped up. Plus, I had this weird razor burn (or so I thought) on my legs. I had to sing (in a sleeveless dress with a big leg slit) on Christmas Eve in front of a large congregation. I did not want to look like I was a leper! Little did I know, this was nothing compared to what was coming. I was prescribed steroids for five days and sent on my way. Things started to clear up! And then I ran out of steroids….
Fast forward to New Years Day.
The previous night, I felt great. I shaved my legs and wore a brand new pair of (very) skinny jeans. The next day, I woke up with the weird “razor burn” rash again. I thought I just needed a new razor and to trash the pants. Then I noticed a bump on my arm was very swollen and hot. I went to a doctor (one of the few that was open on a holiday) who thought it was MRSA. He took a culture and gave me antibiotics. It wasn’t MRSA. When I went back in to get the test results, he referred me to a dermatologist and asked me to email him when I figured out what was wrong. It’s not fun to be an anomaly to a doctor…
I went to the dermatologist who said it was probably vasculitis but it looked really weird and I am too old and female to get HSP. He prescribed me steroids in addition to the antibiotic and sent me to do blood work and get a biopsy of a swollen lymph node – it could be lymphoma. Great.
I don’t have lymphoma. We just learned that my node was reacting to something… didn’t know what yet. Next, I went in to get a biopsy of the bumps on my leg. A note about biopsies: my gel-pack biopsy (that I got 2.5 months ago) has not healed. My biopsy with stitches healed in 4 weeks.
PSA: If you are going to get a biopsy, ALWAYS get stiches to close the wound. Never get a gel-pack.
Then I flew off to be in a friend’s wedding. During the dress rehearsal, I realized I could not bend my left knee fully and it was swollen and painful. My ankles were also swelling. I thought this was due to wearing new heels all day. I wrapped my knee with compression wrap and moved on with life.
Before getting in my dress the next day, I took off the wrap and my entire knee was broken out with lots of tiny red dots. Luckily, my dress was floor length and I could hide it. I was freaking out inside but I convinced myself that it wasn’t worth ruining my makeup over. So, I got dressed and acted like everything was fine. I couldn’t fix it right then anyway. I iced my knee until the ceremony began. It was numb for the whole service so I was able to enjoy myself, beaming with pride for the newly-weds.
During the reception, I had to sit down and ice my knee, ankles, and feet because they were so swollen. I cried to the mother-of-the-groom several times; but I kept reminding myself that although I was in pain and upset that I couldn’t be dancing with my friends, I was still able to be at the wedding and watch the fun. Plus, a nice, cute guy came and talked to me and mimed slow dancing with me while I was stuck in a chair. It was not my ideal way to spend the night, but I had a good time nonetheless.
But then it got worse…
The next day, I tried to fly back to my school. My first flight was delayed and I missed my connecting flight. I was in too much pain (crying in the airport is embarrassing) to have an eight-hour layover. Luckily, I was stuck in the city that my aunt lives in and so I rescheduled my flight for the next day. She picked me up and took me to the ER where my mom met us. They assumed I had HSP but they still didn’t fully understand how I could have it so I got strong pain meds and went to go rest.
Finally, I got back to school
– still unsure what was wrong with me. For weeks, I was in excruciating pain (hydrocodone is fabulous), getting worse, and scared I was dying. I went to another ER and was told they couldn’t do anything for me except refer me to a dermatologist – who couldn’t fit me in for two more weeks.
Ridiculous, right? Good news is coming, I promise.
As I was sitting in church choir rehearsal a few days later, a lady came up to me and asked “How did you get vasculitis?” My jaw hit the floor. She had only seen the ulcers on my ankles from a couple seats over and knew what I had?! I had seen SO MANY doctors who were unsure and this one just happened to know what was wrong with me?! She is now my Rheumatologist who I see on a very regular basis. After MANY tests (predominately blood-work) with the rheumatologist and dermatologist, we decided that I did, in fact, have HSP – and a very bad case at that. I am just very unlucky. But things finally started to look up. – See Part 2.