We are going to get real and deep in this blog.
The past few months have been some of the hardest of my life. Even harder than when I was going through my Crohn's Diagnosis. As many of you know, I was admitted to the hospital back in January due to not being able to hold foods and liquids down. (You can read about it in my past blog, "Admitted"). Well, after that, things continued to decline and I had a follow-up with my GI. He ran a bunch of tests and scans, but everything came back normal and even indicated that my Crohns Disease is in remission.
Being in remission is amazing news, but it does not give me any answers as to what is going on. My GI believes it is a functional or motility issue and referred me to Mayo Clinic. However, just because you are referred to Mayo, does not mean they are going to "accept" you as a patient. Basically, they review all of your medical histories and see if they can help you. Twenty days after my file was sent, we finally heard back saying that I was declined because all my labs and scans were normal, they don't know why I am being referred. My doctor called back and they said they would look back over it and let us know in 5-10 business days....
This past Monday, I went to the ER because I felt off. I felt like I was going to pass out, my vision blurred, and I felt light headed and heavy. I took my blood pressure at home and it was low. The triage nurses wrote me off saying it was probably a migraine or narcolepsy... WHAT?! The one nurse thought that since it hit suddenly, maybe it was narcolepsy. The other explained to me that you don't have to have a headache to have a migraine and that it was probably just a migraine. I get that I'm young. I get that I was trying to say I was having a heart problem and felt weird, but that should not affect my care. The nurse even said, "I'm not trying to write you off, I'm just letting you know." I was already thinking she was writing me off but DON"T TELL ME THAT! IT JUST MAKES IT WORSE! After a long night in the ER, the doctor diagnosed me with POTS and told me to follow up with cardiology. However, ER doctors cannot diagnose you with POTS and there is a lot of testing that needs to be done to get that actual diagnosis.
On Wednesday, I woke up feeling like I did on Monday, but had things to get done. I went about my day, while feeling like crap. At dinner, I threw up, which has been common since January. Then, on the way home I told my sisters I really felt like I might pass out and felt the sense of heaviness I had felt on Monday night. They both said a few minutes later they looked over and I was slumped over. I was breathing but my eyes were unresponsive. When I came to, I was disoriented and threw up again. My dad took me to the ER. They did blood work, an EKG, and a CT scan. These all came back normal, so they gave me a liter of fluids and we discussed possibly admitting me for observation. With my appointment coming up with cardiology and the doctors saying there was nothing that could really be done and telling me it probably relates to my GI issue, we decided to go ahead and head home.
Thursday morning I woke up throwing up stomach bile and unable to hold anything down. I called my GI immediately to see if we had heard back from Mayo. When he called me back, he let me know my case is still in review. I slept most of Thursday but became a little stressed when I woke up at 4pm, because I needed to drive back to Tennessee for a mandatory meeting on Friday.
My parents decided it would be best if one of them drive my car and they drive back together in another car. Everyone is concerned about me driving and passing out at the wheel. Everyone is just trying to get me to that cardiology appointment in a little over a week.
I just want to know what is wrong with me. I just want to feel better. I just want to have energy. I'm so tired. I'm tired f being written off at ERs because I'm young. I'm tired of I don't knows. I'm tired of not being able to eat. I'm just tired.