Being in "awkward places"

I have spent a good portion of my earthly existence being stuck in "awkward" places. None of that is helped by being an awkward person in general. Socially awkward is the understatement of the year when it comes to me. Unless I really know a person well, it is difficult for me to relate to them in social situations as a general rule. Part of that is due to possibly being on the autism spectrum, having issues with sensory processing, and dealing with the constant changes that my illness and disability throws my way. Which brings me to another point.

I'm an awkward disabled person. Not just in the sense of being "regular person" awkward either. One of the things I love about social media and the internet is that it allows me to connect with others who are going through a similar disease process and similar issues related to illness and disability. However, because Mitochondrial disorders were long thought to be "definitively passed on by an affected individual," for many years people affected or with a suspected Mito diagnosis were strongly discouraged not to even try to have children. This subject most definitely has evolved over the years, and that school of thought is becoming less common. Last January when I saw Dr. Kendall, she basically told me that there was really no way to know at this point whether or not my particular disease process was going to be passed on to children, nor how likely it is. She told me basically to go for it if I felt it was right. At this point, there is a small population of people in the Mito community that are in the same place that I am. Disabled, pregnant, and going by the seat of their pants as far as prenatal care and pregnancy complications go. There is almost no literature published on pregnancy and Mitochondrial disorders. My hope is that as time goes by and medical science advances, there will be studies and more information for people like me. As Mitochondrial medicine advances, we are likely to see more and more individuals in the same place as me. This is both awesome and scary all at the same time, but I really hope that at some point there will be a good amount of literature and protocols involved!

Lately I've been struggling a lot with grief. My life has drastically changed in the past year especially. It was January of last year that my long escapade of being on Family Medical Leave began, and I was only able to return to work for a few months before I realized that I was not able to continue working full time anymore. In fact, working in a clinical nursing job in long term care just didn't seem like it was possible anymore. This realization was horrible and it took me several months to accept. For years I worked hard to get where I am today. I went to college for five years, worked my entire way through those college years as a CNA, moved on my own, bought my own house, and had a secure job that I loved. Now, in the blink of an eye, there was no way to maintain that way of life on my own. My body simply could not handle the physical or emotional stress of the job. Though I'm ill, and my illness has undoubtedly progressed significantly as of late, I guess I thought this would be many more years, at least a decade down the road. All of a sudden that dreaded moment was here. I've always prided myself on being an independent person, but now I couldn't do so much on my own. I have to rely on my husband at times for some physical needs, especially during the times where I'm in the midst of a crash or an autonomic episode. Accepting this as my new reality has been anything but easy, and I find myself upset a lot. This is completely natural, and understandable I think.

The thing I guess that I struggle with the most is being in an awkward transition in life. I'm disabled and chronically ill, but not enough to need full time disability benefits at this point. Not to mention the fact that I do not yet have an official diagnosis of Mito or Peripheral Autonomic Neuropathy, two diagnoses that would allow me to quality for disability. Not only that, but I would like to be able to provide more income for my family than I would on disability. I want to work out of the home or in my home for as long as possible. While I have lost some of my independence, I don't want to lose any more if I can help it. I fully realize that there may come a day when I need disability benefits, but I would like to avoid this as long as humanly possible.

With all of this being said, I am beyond blessed and overwhelmed to have all that I do in life. I have a wonderful husband who loves me and takes excellent care of me. I have a beautiful baby girl on the way. Though I struggle with illness, I do have people in my life who do their best to help me, show me love and patience, and try to understand what I'm going through. All of these things are incredibly gifts that I do thank God for each and every day.

I started week 30 of my pregnancy yesterday. I have 6-10 weeks before my little girl comes. I can not wait to meet her. I continue to pray that God will allow me to carry her as long as possible for her to be healthy.