It has been awhile since posting.
At the end of December, after continued flare ups, I realized this was going to be a longer road than planned. I was encouraged to apply for disability and I began that process on December 30th by submitting my application.
At this point I have:
Each one of these comes with their list of woes. Often times I will have a flare up of one, which will then trigger a flare up of another. My specialist and I are trying different forms of medications, supplements and therapies. It's hard to tell what is working and what isn't.
I also took a neuro-cognitive test that shows I have inflammation and/or brain damage. When that is flared up it is hard for me to find words and sometimes even form sentences. I have to lay down and sleep, that is the only thing that has helped with it.
In light of national mental health awareness month, I will say that I have also been diagnosed with severe depression. Often times when I'm bed-ridden and can't have light or sound it is hard to not feel down. I have gone from functioning enough to feel like I am contributing to society through my work, to being a woman with two masters having to crawl into bed at the drop of a hat. It is hard to make plans with people because I never know when a flare up is going to occur. I live moment by moment.
There are things I do to cope with my depression. I pray, listen to meditations and do breathing exercises. I chat with people online while I'm in bed. I listen to podcasts and read when I'm able to. I spend time in nature and travel. I've begun looking at things that make me smile and do them when I can.
One day I was in a lot of pain and the thought, "I want to die" kept interloping into my thoughts, so I decided to shift my mindset and say "I want to dye my hair" whenever it entered. After more than 24 hours of thinking this, I of course wanted to dye my hair. A week later, a wonderful friend was gracious enough to do it for the cost of the materials only. I have been able to share my story whenever someone asks about my "mermaid hair".
Having chronic illnesses and chronic pain is very debilitating. After being holed up for a few days or a few weeks, you lose strength and you're constantly fighting to build it back up. At the same time, you have to pace yourself, because if you push too hard you could end up in a flare up or crash again. It is also very lonely. People in your life are moving on with theirs, while your stuck in bed. I'm so thankful for those that check in via texts and video messaging. I never know when I'm going to be able to focus and function. I also feel bad that I haven't been the friend or family member that is as supportive as I once was.
I continue to pray that I find a treatment plan that works for me, as well as for guidance as to what to do with my future. I hope disability is approved so I have some source to pay bills while I get things figured out. My medical leave ended in April, and I have not been working since October.
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