Thursday, July 5, 2018

Time to get a little personal

I've made the decision to blog every Wednesday, Although today is Thursday. Why did I wait an extra day? Well I wanted to share some personal things I've been dealing with and it had to wait till today. As mentioned in a previous post, I've been dealing with some health issues. Lots of blood work, diagnostic tests and specialists. Well the good news is I'm getting closer to a diagnosis. I want to share my last year with you.

Well I thought it all started in August, but have since learned many of my health issues even from childhood are relevant. In August I got this god awful rash (I thought it was an allergic reaction), someone compared it to vacuum suction marks. It was painful and I could hardly move. I spent nearly every day in urgent care or the doctors office. I was put on oral steroids for 6 weeks. At the end of August I saw a specialist who did what's called a punch biopsy of the marks I had. The results came back positive for  leukocytoclastic vasculitis (LCV). This is an autoimmune disease of the vascular system, there is no cure. LCV is commonly a secondary diagnosis to other autoimmune disorders. So we continued with more tests. Everything was coming back negative, yet I was in so much pain, I was exhausted, like couldn't even lift my head. I'd sleep for 18+ hours a day and couldn't function. We knew something was wrong, but couldn't pinpoint it. I saw my PCP, a dermatologist, an internist, a resident that specialized in rheumatology, a cardiologist and had a referral for a rheumatologist. My PCP, the intenist and resident all thought it was fibromyalgia. Well I have a nursing background and just didn't feel that was it. I still thought there was more to my story.

Finally in June I saw the Rheumatologist, for those of you that don't know they specialize in autoimmune disorders. Well after one hour with me, she went over signs and symptoms, looked over photos and said she's convinced it's Lupus. So back for more blood work I go. She also informed me she saw signs of it in my blood work from August. Now I will admit, this is the exact diagnosis I suspected. Most people it takes years to get diagnosed, but it looks like less than a year for me. So I feel very lucky. If you don't know, Lupus is a disorder where your immune system attacks your own body. There is no cure only treatment, which isn't very pleasant either. Lupus can also attack your organs. I already have suspected kidney and heart involvement.

So why am I happy to get diagnosed with this? Well simple, the sooner I start treatment the better it is for me. People with Lupus are now living full life expectancy with proper care and treatment. I also spent the past nine months in bed, my memory failing, couldn't get my thoughts straight or even out at times, no will to go on, no motivation and depression took over. I was one 12 different medications (I hate taking meds). I'm ready to face my disease head on. So I said enough is enough, I started writing again and here we are, release week for the revised version of Immortal Embrace. I vowed to not let my disease win over my life. I have my drive back again and so excited for what the future holds.

Today I had a MPI Stress test. This is a test of the heart, I had to walk on a treadmill until a target heart rate was met. I was injected with a special dye and the MRI photos were taken of my heart. I returned 3 hours later for more MRI photos to be taken. I won't have any results for a few days, and have five...yes five more heart tests coming up between now and October. I see the Rheumatologist at the end of this month and will hopefully start treatment as well as further investigation into my kidney's.

So that's my story, I want you all to know that no matter what it is you might be going through, you're not alone. reach out to me on social media, email, whatever. I'm here to listen. I'm writing again, and have like 7 books coming out before Christmas (including the revised Embrace Series). I will keep everyone updated on my progress in both writing and health and thank you for standing by me. I love you all.


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