My story starts back in August of 2013, I was 24 years old at the time and was just beginning to kick off my career in portrait and event photography while waiting tables on the side. I was and still strive to be active and healthy, but was met with a very cruel surprise after a long, busy dinner shift that has since thrown quite a good sized wrench in the spokes. I was required to wear long, black pants and a long sleeved shirt to work so I did not notice until I returned home that I was covered from my elbows down in little red spots that looked to be a severe case of petechiae. This had my mom, who is a nurse, and I pretty freaked out. We had never seen anything like it and it was pretty random because they were not there just six hours earlier before I went to work.
I scheduled an appointment with my doctor for the next day, he took one look at it and diagnosed me with an allergic reaction which my mom and I knew was complete BS. I couldn’t feel the spots and they were not palpable (raised) or on the surface of my skin, they were under my skin. But I did as the doctor requested and took his prescribed allergy medication, which low and behold, did not do a thing. The spots began to get thicker and after about a week I was beginning to feel like I had a minor sunburn and noticed that the spots were growing to be palpable and were accompanied by joint pain in my hips, knees, and ankles. So after weeks of utter confusion, hoping it would just work itself out and go away, we were finally referred to a specialist who would not be able to see me for another two to three weeks.
During that period of time things got much worse, the rash got worse and so did the joint pain. Then one night out of the blue I was hit with some of the most excruciating abdominal pain I had ever felt in my life. It got to the point that my mom realized it was not just a stomach ache and off to the emergency room we went. We had come to find out that my intestines were so inflamed that I was literally full of shit. Because of this incident I was able to get in to see the specialist much sooner than scheduled, and thank goodness because he actually knew what was wrong with me. That day I was diagnosed with a rare form of Vasculitis in adults called HSP (Henoch Schonlein Purpura). This disease is normally only seen in young children ages four and younger, but there is a lucky 1-2% of adults who get it and I just so happened to be part of that percentage and the older you are when you retract it, the more susceptible you are to have it affect your kidneys which can send you in to immediate kidney failure. Luckily, it has not reached my kidneys and the rest of my innards are perfectly healthy… for now, but lets pray it doesn’t get that bad.
So I have been dealing with this crap for going on eight months. I have switched over to a 100% organic diet, I cant have alcohol, and I cant even go for a walk without my skin and legs flaring up like a damn firecracker. But even in the midst of dealing with all of that, I think the worst part about living with Vasculitis is not the pain, or the ugly unsightly rash, it’s the fact that almost NO ONE knows what it is and that there have not been enough cases of it in adults to know how to treat or prevent it. I have an appointment with a rheumatologist at Virginia Mason Hospital in Seattle coming up in the next couple of weeks and I am praying that he knows how to help me so I can kick the shit out of this thing.
Cassie
Washington
Submitted 05/14/2014
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Another rough day. It’s a beautiful Monday and I am in the middle of trying to build a back yard veggie garden. And after only 20 minutes of trying to dig tiny little patch in the ground, I feel like a 300 pound, 60 year old woman who has been smoking for 40+ years. What would be a normal task for anyone else had pretty much taken it out of me for the rest of the day. I can barely breathe, my hips and knees are practically swollen strait and my legs are as red as a damn strawberry. I am 25 years old. This is not ok.
I have no idea if you still go on this website at all but your story is similar to mine. I am currently 18 years old and in my senior year. I got the same rash as you along with abdominal pain- I went to the ER four times and had doctor’s appointments 5 times within the past month, only to be sent home and told by the hospital and clinics that it was just an ordinary rash that had to run it’s course. However, at this point I could hardly walk and going to school was absolutely not an option. My body was covered in red spots with the exception of my head, and moving around or touching the spots felt extremely painful. I felt humiliated and embarrassed, showing up to the ER and then being told to go home because there was no emergency. Finally, I got into a rheumatologist who diagnosed me with HSP and everything started to make sense. I cannot go to school at the time (unsure if I will be able to graduate on time), and most of the people I explain this condition to simply do not understand. I can hardly eat and it’s odd to not exercise like I used to. I hate staying home all the time and having so much pain. If you ever do read this, I hope that you are doing better now and I hope things look up for me. It’s nice to see someone who relates to me and understands the struggle of dealing with doctors who do not know much about this disease.