So far, I had a bumpy ride (not literally) to the hospital, a blood transfusion and thankfully did not have leukemia, as the doctor considered I might have.
By the fourth full day, I was ready to get out of there. There was a new doctor on duty for my floor and I was waiting on him to tell me if I needed more treatment or if I could go home. I felt better, even if I was still feeling weak. I wasn’t used to staying in one room and in one place. My bed had an alarm on it that would sound if I got out the bed on my own. I had to call someone every time I needed to use the restroom. I even set the bed alarm off one time when I was stretching.
I desperately wanted a change of clothes. This was the part of the pandemic when visitors were not allowed, so I only had what I came to the hospital with. I was wearing my own clothes on my bottom half. I washed my clothes out in the sink twice, but I still felt gross. I also wanted to shower and wash my hair. These were all signs I was on the mend because I really didn’t care at first.
I was antsy and wanted to get home to see my family and cats, but I still didn’t have a diagnosis. At least part of the issue is that my stomach blocks vitamin B12 absorption, which is an essential vitamin. I was taking the vitamin orally, which was not helping my body at all. I received I think 2 injections into my stomach.
I was cleared to go home. The doctor pretended to be insulted by how happy I was to get out of there. Exactly what caused me to need a blood transfusion was never determined, but I improved, so I was given my walking papers.
My sister had a business zoom call at the time when I was told I could leave, so I had to wait until she was done. They turned off my bed alarm, so at least I could pace around the room. I talked to my mother while I waited, and she had a long list of complaints. I figured I must be better if she thought to unload on me, but I didn’t realize at the time how sick she was. My brain was foggy for awhile and I could only see what was happening when I look back on it.
When my sister arrived, the nurse wheeled me down to the car. I don’t have words to describe how good it felt to feel and smell fresh air again. I didn’t know how much I missed it.
Even though I was out of the hospital, I had not recovered as I would learn. My legs felt like jelly, and it didn’t take much to make me tired and out of breath. I remember trying to put clean dishes away in the cabinet and I didn’t have the strength to lift a stack of glass bowls. This went on for weeks. I don’t know when I started to feel normal because I had to contend with the grief of losing my mother. That took a physical toll on me that I cannot separate from my illness.
It is both frustrating and terrifying not to know what caused me to need to be hospitalized. (I didn’t mention this in the first part of this essay, but I had a telemedicine appointment before this occurred. The doctor prescribed me antibiotics and thought I had an upper respiratory infection. Since that was not the case, the medicine only made me sicker.) I have a new set of doctors who are monitoring me for any decline and still performing tests to determine what is really wrong with me. I avoided another scary possible diagnosis around Christmas, when I was tested for an incurable type of blood cancer. I am ecstatic to report that I do not have that. It’s been a little over a year and I still do not have a diagnosis, I only know what I don’t have.
So, how has all of this changed me? I realized time is not on my side and I cannot take it for granted. I always thought that I had time to do all the things I wanted to do. When I was sick, I couldn’t do anything except sit or lie down, so I started working more seriously towards my goals. I wanted to write since I was a little girl, so I published not one, but two poetry books this year. I started writing two romance novellas, which I hope to publish very soon. My health is not guaranteed, so my motivation is to experience as much as I can while I have the opportunity.
I know to follow my instincts. I knew something was seriously wrong with me. I don’t want to imagine what would have happened if I didn’t go to the hospital or another doctor misdiagnosed me and gave me more unnecessary medicine.
Thank you for reading, especially if you read all four parts. I’ll leave you with two pieces of advice: don’t think you always have tomorrow to do what you want to and become an advocate for yourself. If you know something is wrong in your body, don’t stop until you find a doctor who believes and will treat you as you should be.
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