See Part 1 for the beginning of my journey with HSP-Vasculitis. Don’t worry, this part gets happier.
I have been on steroids (Prednisone) and antibiotics for 2.5-ish months now (since the final diagnosis –I was off and on them for a month before that).
I started with 60mg of Prednisone in February and am currently down to 10mg.
My arms have almost fully cleared up – I only have scars left. My legs only have two open wounds and the rest is purple scar tissue.
I have actually been healing pretty quickly. I did have to drop some classes and will be graduating late. I had to cancel some auditions and put transitioning into the adult-working world on hold. BUT I am healing and that is all that matters. The rest can wait.
Based on Part 1, one would assume this situation has been horrible for me. And you would be partly right; it has really sucked. Some good has come out of it though. I have learned that I have family and friends who will support me, take care of me, and pray for me no matter what. I cannot count the number of times I have called my friends bawling or begged them to get dinner with me because I needed a distraction. My mom flew out here to take care of me for a week and be with me when I got my test results, learning what disease I actually had.
At that point, we thought I could have chronic vasculitis or organ failure – I don’t. My bosses changed my workloads to accommodate my inability to stand for longer than 5 minutes without being in pain. My support system has been amazing. I love all of you.
I also realized that, although I wish this never happened, it happened at a good time. Yes, I have to stay in school an extra semester; but I am also able to take more classes and improve my skills. The university has agreed to extend my scholarship for a semester and my teachers have been understanding of my new accommodations. Also, after I get a tonsillectomy this summer, I will be able to work with my voice teacher to learn how to sing again. I had to drop classes, but now I have more time to work on writing my thesis. This blog came out of this hardship!
All of this taught me that every cloud has a silver lining. At least one positive thing happens every day – even if it is super small. For example: today I found out that I do, in fact, have some new ulcers popping up on my legs. This means I can’t get off the steroids like I was hoping to (the side-effects are NOT FUN). It also means I’m not doing as well as I thought I was. I stupidly looked at the scale at the doctor’s office, confirming I have gained weight – which I am very distraught over since I love working out and being fit (something I can’t do right now). I am tired because I haven’t been sleeping well. Etc. etc.
Basically, I am not happy about how today has gone. BUT I found the silver lining. I was allowed to shave my legs for the first time in too long (Thank God for pants). This means that my ulcers have healed enough that my skin is flat again. That is MAJOR improvement. There are days that I look in the mirror and all I see is the weight gain, my puffy face, and the scars. It is not fun to look at yourself and feel embarrassed. On these days, I force myself to spend extra time in front of the mirror, notice what I do like, and emphasize that. I play with eye makeup. I got a haircut and dyed it burgundy. I add a belt around my waist. Etc. This seems superficial, but it helps and that is all that matters.
The moral of the story is:
Find something positive, no matter how small, to hold onto for the day. Don’t let yourself dwell on the negative. Grab onto the positive and don’t let go. If you can’t find positivity in your day, go out and look for it. Start a new hobby that brings joy to your heart – I started blogging. Listen to your favorite song. Call a friend. Drink some wine. Eat a cookie.
Find one thing that makes you happy and do it. If your body is sick, don’t let your mind get sick with it. Half of the battle is mental. If I didn’t find the light in my situation, I would have become depressed very quickly. I didn’t want to do that so I convinced myself to put on my big girl pants and make myself happy. It’s hard – not just some days but almost every day – but it is do-able. I promise.
Find the light. Let it sparkle. And hold onto it for dear life until the next light comes along. You can get through anything. It’s hard but you are strong and I believe in you.