Why hello there! Super long time, no see.
Things have been wonderful, trying, and evolving to say the least. I don’t want this post to be extremely long and boring. There will be plenty more blog posts to catch you guys up on everything. I’ve had a lot of growing pains within the last year and I want to share the most recent events to give you a general idea of what has been going on lately.
I have had a uphill battle with my autoimmune disease, Leukocytoclastic Vasculitis (also known as Hypersensitivity Vasculitis). This form of vasculitis is a disease characterized by inflammation of small vessels. This disease typically manifests on the legs in the form of a rash/bumps which can turn into large skin ulcers or lesions. If you think it sounds painful and gross, you’re completely correct. I’ve been dealing with the symptoms of this disease for years now and thought it was something I could resolve on my own by changing up my lifestyle.
Some of these changes seem to work for a short amount of time. I’ve tried Whole 30 (which by the way I loved and should really do again), Paleo, Keto, Gluten Free, you name it, I thought it was going to be the cure for this disease and have me glowin’ like Beyonce.
About two months ago, I started one of the worse flares I have ever experienced. Something about this flare set off red flags and I knew I was in for something major. Typically, standing and sitting for extended periods of time would trigger a flare. Which sucks for a girl that is use to going to 3 concerts a week and dancing the night away. The first sign of a bump/hive on my legs, I would take Benadryl before bed and sleep it off. Usually it would clear up by morning and I could go about my life. But not this flare, this was something different.
I tried my typical ‘drug myself with night time pain relief and allergy meds’ method but the pain from the hives on my legs literally wouldn’t allow me to rest. After about 2 sleepless nights, I began to panic. How was I going to be well rested enough to get up and work? How was I going to heal from the flare? Are my symptoms getting worse?
Days became weeks with no relief. I turned to the Facebook vasculitis groups for answers or for anyone that could relate. Everyone showed empathy and sympathy but I didn’t really find any answers to resolve my current flare. I had no choice but to start calling out of work to rest since I was missing so much sleep due to the amount of pain I was in. Usually my flares would take place on my lower legs, but this flare was on the back of my thighs. Which is literally the worse place it could have happened. I was unable to lay or sit without feeling like I was sitting on knives. I didn’t know what to do or what doctor to contact but I knew this had to be the last time I ever felt this way.
A common theme that emerges among people living with an autoimmune disease is the feeling of being alone with their illness. I felt very trapped in this rollercoaster of “eh, I feel okay today” and then the next day feeling like I wanted to just get my legs removed. I started going to every doctor I could think of and was prescribed medication for depression and given pain killers. Nothing made sense and I felt like no one was able to help me.
Finally, about a month ago I saw a nurse practitioner who I am pretty sure saved my life. The wounds on the back of my thighs had an infection and needed to be cleaned surgically. They were also so deep at this point, that I needed to get a skin graft (I actually received a xenograft which is a skin graft where donor skin is used). I was hospitalized for a week and a half and let me tell you how grateful I was for this. I finally felt like I was being heard, plus my pain was managed enough where I was able to rest. The gratitude I have for the doctors and nurses that treated me is out of this world.
I have been out of the hospital now for 2 weeks and still in recovery. I have a in home nurse come to dress my grafts twice a week and I go to the wound clinic at the hospital once a week. I have some pretty fantastic zombie skin grafts that are looking healthy and healing. My stride is becoming less of a waddle and more of a walk. This blog post is my introduction back into the bloggersphere because this something I need right now. It’s something I missed and I have been neglecting my passions.
One of the most common questions I am asked is, “How did the flare happen and why was it so bad?!” The simple answer is stress but the slightly longer answer is forgetting to live my purpose. It’s so easy to become a person that says “someday” or “I want to” and put YOU on the back burner. I’m done with that. With the help of a new medication, an amazing support system, and a whole bunch of much needed self love, I am pretty sure I am jumpstarting a new bad ass chapter of my life.
Thank you to all of you that visited me in the hospital, sent me messages, left me comments and sent positive and healing energy my way. Your beautiful energy is more than I could ever asked for and is majorly appreciated.
XO, a go go bye!