Chronically Overwhelmed

I typed this up originally to share with my friends who also suffer from chronic illness but have recently decided that in order to make myself feel better and to help people around understand what’s going on, a blog may be cathartic.

Please excuse my language but... Recovery is a bitch. Recovery from ANYTHING is a bitch, and here I am recovering from that one time a little over a month ago that I died.

Sometimes I just can’t. This whole positivity and “I lived! Yay!” thing is hard. I AM positive and I AM happy that I am not dead or on life support anymore; I also am overwhelmingly sad. I am so, so, so overwhelmed by how hard it is to get better. When I visited my pulmonologist AGAIN, he said, “Yeah, this is tough. I thought you would be better by now.” … So did everyone else. When all of my doctors refer to the reaction of medications in a “healthy 27-year-old” I wonder where this healthy person is coming from; I certainly am not her, I died a month ago. I died. And I can’t make it through a day of work. And I am on so many meds that I can’t go two hours without taking another one. And people have stopped feeling bad. It is like they were sympathetic for a while but they had to move on and I am still stuck here. Luckily my doctors believe me (I mean, they have the data) but it doesn’t mean they can figure it out or make me better; they just keep trying to throw things at me and I am still stuck here.

The realization that I felt sick the night that this all went down and my heart stopped has been terrifying... I always feel sick, I have a chronic illness. My daily pain level is a minimum of a 6. I am on maintenance steroids that are more than most people will ever take in their lives and regularly take anywhere from 12-32 pills every day; so sometimes even though I am sick I ignore it. I push through when the symptoms get bad because realistically the symptoms are always pretty bad. That night I felt nauseous, lightheaded, and a massive amount of migraine-type pain; but nothing that would indicate to me that my heart was about to stop. I have had to stop and remind myself that I need to pay attention to the pain and the illness and I need to take the time to rest.

I am sorry, I know this isn’t a happy post but I don’t know how to move forward right now. Fighting is harder every day that I have to call in to work and miss out on living because I am so busy not dying.



Still not dying from: eosinophilic esophagitis, mast cell activation syndrome, congestive heart failure (unknown origin), angioedema, cholinergic urticaria, aquagenic urticaria, and who knows what else.