Hey everyone, it has been a hot minute.
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In all honesty, I haven't really felt like writing an update because a lot has happened both medically and in life in general.
Long-story-short, I had an episode in Alberta where my platelets crashed. At this point IVIG and steroid treatment were out of the question as both are deemed ineffective for my ITP. Unfortunately, the out-of-province hematologist I was referred to did not seem to care about my health history. This lack of care and respect for a patient in critical care led me to leave against medical advice until I could get proper care for my disease.
Fortunately, my platelets bounced back up on their own and have been relatively stable.
However, if you know me or have been following along with my story, fall is a scary season for me. And no, not because it's Halloween. My platelets have a tendency to drop below safe levels putting me at an increased risk for a brain bleed. Just a reminder but when my platelets are less than 10, a sneeze or headache can result in death; hence, the name 'fragile friend'.
Further, my other autoimmune disease, Neutrophilia, means that I don't have a strong immune system AT ALL. As mentioned in previous blogs, if I get a fever and do not get to the hospital in time for immediate treatment, I will die. It is time-critical.
How does COVID-19 impact me? Why do vaccinations matter to me?
Right now, I am scared that my platelets are going to drop as they routinely do this time of year. I am watching and praying that the big bruise on my leg doesn't result in a platelet crash. I am scared because if my platelets crash, I do not know my treatment options and a splenectomy might be my next bet. I am scared because either way, if I need treatment, there will not be a hospital bed for me. I am scared because I will have to stay home, hoping I don't sneeze or get a headache, hoping my anxiety stays low enough that I can function, hoping I have enough energy to get out of bed every day. I am scared of being so fragile that a hug could kill me.
I am scared that my neutrophils might crash if I get any sort of illness. I am scared that if I get a fever, I will get to the hospital and they won't have room for me and I won't have a fighting chance.
I am 21 years old and I am eligible for my third vaccine booster shot because of these disorders.
Remember H1N1 back in 2009? I was too late for my vaccination. I caught it. I got deathly ill. It flipped my immune system into attacking itself and, we have significant reason to believe that it is the sole reason that I have ITP in the first place. So what would happen if I got a variant of COVID-19? What will my body do then? I might not end up in the ICU or super sick at the time, but I might have years and years of autoimmune disorders to come.
I respect people having their own choice to what they inject in their body. I don't fully agree with how everything has been handled thus far in the pandemic. But, I do know that healthcare workers are working their asses off. And I also know that people like myself, are fearing their lives because of the lack of consideration from the general public.
Maybe you don't know anyone that has had COVID-19 or a bad experience with it. Maybe you don't understand what over-capacity in the hospitals means or maybe you just don't care too much because it doesn't impact you directly. Right now, I am telling you that it impacts me and threatens my life. If you consider yourself a part of my life, I ask you to reflect on this and your actions. I plead for you to do the right thing in helping others have a fighting chance. I know that if my platelets crash while this pandemic is happening, I could die.
Your scared, compromised, fragile-friend,
Tianna
