Week Vibes & The Month

It’s Monday and I’m back. Let’s just say this week has been an interesting one, so I’ll take a mini break from the story line of my condition, but the month I was in the hospital will follow below. So as most people know, I cut my hair. I cut my hair probably the shortest it has ever been. I’ve always liked long, flowy hair and I was actually trying to get my curls back until I messaged my trio and asked for their opinion, they agreed I should go for the cut and I told them I would that weekend. Spur of the moment decision… I cut it the next day. I feel like my life is currently at a stand-still and even though I am working full-time while going to school full-time, I still feel stuck. I needed a change; I needed something different and interesting. 

Also, it was Mother’s Day, so a big Happy Mother’s Day to all of the amazing mother’s in this world! I know so many amazing women who are mother’s that go above and beyond for your children, especially my momma bear. I’ve had a few flare ups during the week but nothing I cannot handle besides body aches and being unbelievably tired all the time.  


Now to continue with regular programming:

Last that you have read I was out of surgery and being carefully monitored. I barely woke up the next day because my body was drained and I was so drugged up on the pain medication I could barely open my eyes. I felt my mother and my father next to me and that was all I needed. During the first week of being in the hospital, I was in the ICU. Only close family and a significant other at the time. I couldn’t begin eating until about Wednesday or Thursday and then that’s when shit escalated quickly… I had a huge tube in my neck going down into my liver. Sounds weird right? But on that Friday or Saturday, the doctors had begun to tell me they would move me down back to pediatrics so they were going to have to remove the tube. I, being the naïve bimbo, thought that they were going to put me under anesthesia so I wouldn’t feel a thing. NOPE! Within five minutes, the doctors and nurses pushed my shoulders down and started pulling the tube out of my neck while I’m here screaming bloody murder. I felt the tube go all the way up and out and even when it was out they had to push down on my shoulder to stop the bleeding because I could bleed to death. I remember while this is all happening my cousin screaming at my aunt, asking what they were doing to me and my sig. other running out of the room because he was about to vomit. After that, I thought I was all good and no more pain would come my way, but… wrong again. They had to start me on blood thinners because all they knew was I had blood clots and they did not know how they were forming or why. So there are two types of blood thinners, pills and needles. Needless to say, the injection form of the blood thinner works quicker but it hurts and burns like a bitch and a half. Five minutes after they took out the tube, they injected the blood thinner into my stomach and once again, I screamed. The serum unfortunately feels like your skin is burning and I had to take those injections for about three out of the four weeks I was in the hospital. Throughout the next three weeks, I was told I had about 20 different conditions, I had to be put on the liver transplant list (which my parents did not allow) and I celebrated Easter in a hospital bed eating jello. Needless to say, it sucks being in the hospital on a holiday but some nurses are so amazing, they made me feel like they really cared about me. It was not until about week three, they finally figured out I had Budd-Chiari Syndrome with Myeloproliferative disease. I forgot how they found out, but they have never figured out why this has happened to me in the first place. On my last day in the hospital, I had another procedure in which they take out bone marrow from your back and test it. This is when they figure out that I had a Jakk-2 Mutation and I found out that needles and spines DO NOT MIX. While writing this, I reminisce about that month. How strong my family, friends, and sig other were, how my mother spent every single day with me in the hospital even though she did not have to, how my father played no games with my health and how a month, a day, can change your life in a second. I thank all the people who saw me during that month, who wished me well, who didn’t understand what was happening but still reached out and loved me unconditionally and to the people who deal with me now, who deal with this girl who is constantly sick, who’s body hurts 99% of the time, who has to cancel plans not because she wants to, but because she has to.

There’s still plenty more story left…

Thank You,

N.Rarity

 

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N.Rarity

Nina Marie is a 25 year old Bronx native. She has her bachelor's degree in English Literature and she is working on her master's in Early Childhood Education. She has a love of Disney and animals. She was diagnosed with Budd-Chiari Disorder, Myeloproliferative Disease, and a Jakk-2 Mutation at the age of 19. While going through several surgeries and most doctor's appointments, she realized that the best way to get through this hard time was to put it out in the open. Thank You.

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