I stood in this spot, 9 months ago. I was there with Doug, we were installing vinyl graphics on the window. These vinyl graphics to be exact:
9 months ago @wuggied and I were installing window graphics for a customer when I had one of my first episodes relating to #antiphospholipidsyndrome. That was at the end of July. I got my diagnosis of #APS in November. #work #vinylgraphics #chronicillness #invisibleillness #butyoudotlooksick #life #spoonie #hughessyndrome
As I stood and watched as he masterfully applied the graphics to the window, I was struck with dizziness, at the time I thought it was low blood sugar. Later I would realize it was the my body alerting me that there was something going wrong. It was a late July day. It was hot, humid and it was not even noon yet. I remember telling Doug and the lady we were doing the graphics for that I needed to sit down. After a few minutes the dizziness passed and I felt better. We finished what we were there to do and then went and ate lunch. We came home and Doug got ready to go to the place he works for massage. After he left one of our friends called and asked if I wanted to take a day trip the next day to my hometown to show her and her kids around and to see my family. I told her I’d love to. I didn’t mention anything that had happened because at the time I thought it was an acute issue. I phoned my mom after that and told her of our plans to visit. While I was on the phone with her I was hit with a double vision spell, this was the first of what has turned out to be many of these spells. Looking back I wish I would’ve gone to the doctor then. Though honestly I am not sure it would’ve made a difference, I went a few weeks later, with the same symptoms, and it still got me to the same diagnoses of Antiphospholipid Syndrome and later Lupus.
July 23, 2013, that is forever the day my life changed. Since that day I have felt like I was picked up and sat down into some random person’s life. It is almost like being dropped into a foreign land and expected to survive. I’ve had to learn a new language, medication names, medical terms, abbreviations. (R means Thursday folks! I learned that this week). 9 months, granted this journey started with my miscarriage, but I didn’t realize it, but I know thinking back I was aware 9 months ago something was wrong. 9 months I’ve known something was wrong. I often catch myself thinking, this is not me, this isn’t happening. I know it is, I know it is real, but there are moments, I really wish I would wake up and things would be back to the old normal, that life would be simple again. I will endure and I will get through the tough parts of this. I can remember early on my old PCP asking me if I was depressed, I think at that time I was still too scared to be depressed, and now I’m honestly not sure if I know the answer to that question or not. If I read the clinical symptoms of depression, then yes I am depressed, but it’s much more than that isn’t it? I’m still waiting on the Therapists to call me that my PCP has referred me to. I look forward to talking to them. One of my personal goals is to be able to come off of Mirtazapine at some point, which I am actually on for anxiety and insomnia but it is an antidepressant. I haven’t set a time frame for this, nor have I even mentioned it to my doctor. For now it is beneficial, it helps me sleep at night, it keeps the majority of the anxiety at bay, and it doesn’t leave me feeling like an emotionless zombie. Though I admit there are days I wish that were the case.
I’m going to end this because as I expected this has rendered me in tears. I still can’t talk about the first part of my journey without crying. It’s all part of processing it. If you are still reading thank you for letting me share my story with you.
I leave you with a peaceful picture and the namesake of my hometown. This is one of the places I took my friend and her two boys. I really thought that day may be the last time I would see this place. It was so beautiful. I’ve been back by a handful of times these last few months and each time I go I snap a new picture.: