A Whole New World

And this time I wish I was talking about the song from Aladdin. I officially got to add Common Variable Immune Deficiency to my list of diagnoses on December 29th, 2014. In a way, at first I was relieved. I had validation that something was wrong and that there was a medication I could start to help try and fix the issues. My dr told me the specialty pharmacy would take care of everything and I wouldn’t have to worry about a thing. Little did I know that would be wrong on so many levels…

I was forced to enter this world of bureaucracy and nonsense that is the healthcare system. I spent hours a day on the phone fighting and advocating for myself so I could get the medication my body so desperately needed. Nobody seemed to care and everyone I talked to told me a different answer. At this point, I also relocated leaving all my beloved specialists behind.

I was living in an area with no doctors, no care team and I functionally hit rock bottom. Everything was a fight and I had to establish care with a whole new set of doctors. New doctors mean new and more testing and more questioning things. Still a few more doctors to establish care with, but I’m getting there. Some I really like and some have me longing for the specialists back in PA.

And this was probably one of the worst parts, but I had to cancel my much anticipated trip to northern Europe. My one specialist said it’s just not safe for me to be leaving the country given my lab values. Another one said I’m one infection away from pneumonia and a trip to the ICU. I was devastated and cried and I blamed myself. It’s my body and my stupid illnesses to why I can’t go on a trip I’ve dreamed about for so long.

I talked to people that were diagnosed and have this illness and they told me I was doing “everything right” yet I’ve never felt more lost, alone, or confused. I hated CVID and I wanted to send the diagnosis back. Back to the diagnosis factory, back to who knows where, I just didn’t want any part of it. When you get diagnosed with a new illness and especially a chronic one, it’s like you have to go through stages of grief. You grieve the life you used to know and a life before all of this. And yet through the brokenness and the scattered pieces that my life had become, I managed to find the strength to pick up the pieces and keep fighting.

Thanks to my persistence, I was finally able to start my new medication a week and a half ago. Every two weeks I get to give myself a cross between an I.V. and a shot in my stomach for 2 hours. This will become my new normal and a whole new world before November, I never thought I’d have a part of. Things are looking up as my medication was transferred to a new specialty pharmacy that seems like they are on top of things and they will fight for me.

And as a "consolation prize" for having to cancel Europe, I’m going to Disneyland and Hawaii in September! My lab values should be better then and it's just safer staying in Murica. Not necessarily the trip I dreamed of, but both are places I’ve never been before. I’ve signed up for another race well technically two. I’m going to conquer the Dumbo Double Dare Challenge (10k one day and half the next) with one of my best friends from college.

This new life might not be what I hoped for, but it doesn’t mean this whole new world is going to be horrible either. I’m still trying to find and believe that there is good in this world because that’s who I am and no amount of bureaucracy or illnesses can take that from me.