You're just going about life, dealing with all the ups and downs that come with it. All of a sudden, with no warning what so ever,
On top of everything in your life going up in flames, you also have to deal with the unfortunate reality that you are slowly going blind, due to cataracts.
Hi. This is me. My life is currently a dumpster fire. Not in the way that permits me to become a victim though.
It's hard enough living with a disorder called DiGeorge syndrome. Living in denial about DiGeorge for half of my life, hasn't helped my life much either. DiGeorge Syndrome is known as a defect in the 22nd chromosome. Basically, this means that my genetics and everything in between are all messed up for life.
It was hard for me to accept DiGeorge as it was not particularly a disorder that is well-known. It's difficult to explain to people all the symptoms that it comes with, and all the trials and tribulations I have faced, so I usually take the easy route and say I have typical anxiety, depression and ADHD (which all stemmed from this disorder, by the way).
It's been a struggle accepting myself and all of my flaws. I know there are other adults my age that also have DiGeorge because it is being spiked out about more online, than it had been in previous years.
I never wanted to become a poster child for DiGeorge, and I still don't want to, nor do I think I would even qualify. I just know my truths, and the fact that I am finally ready to share them with others who might need insight keeps me from going out to the middle of some abandoned woods, and screaming my lungs out in frustration.
At the end of last year, I came to terms with the fact. that my lifestyle I was living wasn't fulfilling. Sure, I had a car, I had my own apartment and I had a job that paid my bills. Even though I joke about being a hermit, I even had a small social life. I wasn't able to comprehend the fact that I needed more. I needed to learn how to love myself. I needed to take responsibility for my depression and my PTSD. I also needed to come to terms with the fact that there was no denying it anymore, I needed health care.
And thus started the tedious process of applying for SSI. I'm currently in the middle of this process, and I keep getting denied for Medicare. This is also why my family involved a lawyer to help my case.
My eyes started becoming bad at the end of last year. I had extensive astigmatism, and found driving at night to be uncomfortable. I also found that my vision in my right eye kept getting worse and worse. Turns out, cataracts aren't just something that happens to old people. The reason that I, a 32 year old female, would even have cataracts all points back to my fantastic genetics.
Right now, this prevents me from working or even driving. After months and months, my family and I were able to schedule my surgery. It is currently the beginning of May, as I type this, and I still have a few more weeks to go. I also don't know if I can keep sane while waiting so please join me as I document all of these changes I will have to put up with these next few weeks. I have no idea what my future holds, or what type of job I will get when I am finally able to start working in the real world again. I just hope that recording this journey might be a form of comfort for me, as well as something I can look back on and tell my future self that I made it.
I also hope I can reach other adults who have DiGeorge syndrome as well and will be able to form a community with our stories.
Life is definitely a dumpster fire at the moment, but it's ok because I know I have been through worse and I can get through this as well.
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