I remember my first time being in the hospital, not knowing what was wrong with me. I then remember the first time I was rushed to the ICU that same day, little did i know I would get to know that place real good. I remember crying and having an anxiety attack over a blood transplant. I was scared of EVERYTHING but mostly confused.I remember waiting for answers, doctors talking to me in some other language using big complicated words, repeating my story like 10 times each day! When I did get an answer? I was bombarded with huge medical terms, numbers, medicines, doctors, scales!!! I wanted to scream. Then I had to take a moment…this was going to be my life now so I had to be strong and snap out of it!
I think about those days and laugh and think wow now i’m a total expert on my chronic illness sometimes knowing more than doctors. I know all my meds, what they are for, what happens if I do not take them etc. Being clueless is scary! Mostly when it has to do with your health. I know that personally I was lucky to have my family. They were with me through all my confusion, my ups and downs, my anxiety attacks, my loneliness, they were my support.
Now if I wanted to stand out? I did, because Antiphospholipid syndrome is rare and they did not know what to do, they couldn’t tell me what to expect. Plus the way my body developed my other chronic illness was scary, the unexpected things I had to go through were hard. Even when you have all the hope and faith in the world hearing your doctors give up and say “we do not know what to do anymore” kills! Hearing those words make you feel hopeless and fill you with sadness.
Today I am still here… You are still here and we are fighting with a smile on our face and if you aren’t that’s ok. Dealing with everything we have, normal life problems and health problems can be a lot. We are strong, and supporting one another to get through this will make US stronger. Keep fighting!