The last treatment plan we had set in place, failed, as it only made my conditions worse. Following the weaning off of that medication, the plan was to wait a little bit while my Neurologist/Mito doc, Pulmonologist, and Immunologist concluded a plan together, all being on the same page. It's been months and I'm still waiting. It's frustrating as all this time spent waiting, I'm feeling worse and worse. Calls to my specialists have resulted in feeling even more angry and upset, as the suggestions (the ones that were even an option to begin with) take an extremely long time to even get into my system, let alone, start working on trying to improve my symptoms. I need relief now. But no one seems to want to be the hero in this situation and help me when I feel like I'm needing it most. Personally, I feel like I keep running into situations with my doctors, having the same talk, and opening up and explaining to them that they're not helping me and they're not understanding.
So, I'm in the process of looking into different doctors, different specialists, at different hospitals, hoping that eventually someone is going to come up with a plan. A decent plan that hasn't yet been tried for me. I finally realize d, I can't s it around waiting for someone else to be the hero in my story. I need to be my own. So that being said, this will be a long process because I still need some of the specialists I have now, but I have to try. I have to, once again, explore out to different hospitals, explain my situations, and not stop until someone, somewhere is willing to take my case on and try to help me get my feet back on solid ground. I have to try... I have to try... I have to be my own hero... I have to try...
World Rare Disease Day is February 28th and World Rare Disease Month is February 28th-March 31st. I will be answering a set of questions each day, spreading awareness about the certain illness I fight that are RARE. So, starting on Feb. 28th, look forward to a post I will be doing every day throughout the entire month! Also, I know I mentioned it in a previous post, but any and all type of questions that you may have can be asked on my Contact Me page. Spreading awareness starts by answering questions that you have, so these diseases can become not-so-rare diseases anymore!
P.S.S.
Also, for anyone who used to follow my blog before:
It was previously chronicallyblissful but as you can tell,
I've officially changed it to warriorindisguise!