This post is going to be dedicated to explaining the new adventure I'm about to embark on in the form of at home, self administered IV infusions.
Starting tomorrow, I will be giving myself IVs once every three days, in order to administer my Cinryze therapy. This is something I thought only existed in my dreams, and that I'd never have the luxury of experiencing - being able to give my body the exact pieces and parts that it is unable to make on its own. Lucky for me, Luke is a paramedic and has been giving people IVs for the past 10 or so years, and I have him at my disposal. I do have to learn how to do it myself and will probably do one every couple of weeks just so I don't get too rusty and to keep up to par for the days that our work schedules are completely opposite and I don't see him for 24 to 48 hours; but if I have a professional at my disposal, I might as well put him to work, right? :)
You may be wondering to yourselves, "where does she get this medication, and all of the supplies to suddenly have the ability to get an IV in her living room while watching another episode of HIMYM?" Well my friends, let me tell you - health insurance and people with lots of money who DONATE to financial assistance programs are amazing things. Allow me to break it down for you - each dose of Cinryze costs approximately $7,000 and I need one of those bad boys every three days; that makes ten infusions per month, equaling an estimated $70,000 monthly. That's just the medication itself; that's not including the box of medical supplies I also receive biweekly containing butterfly needles, saline filled syringes, reconstitution water, empty syringes, saline locks, mixing needles, sterile drapes, individually wrapped sterile gloves and a sharps container.
Now, I have a really good job that pays me fairly decently. But I'm not sure even a doctor's salary could actually afford the copay involved with those kinds of costs. Luckily, gratefully, amazingly there is a financial assistance program that I fully qualify for that will provide up to $100,000 YEARLY in copay assistance - and that's plenty to cover what the insurance won't. I can't even begin to think about trying to put into words the incredible feeling that surges through me when I think about how appreciative I am to that assistance program and all of the wonderful people who work behind the scenes to make things like this available to people like me.
Speaking of behind the scenes, I need to take a moment to put my parents up on a pedestal. I never used to understand why my Mom would get so upset every time I got sick, and ended up with my face in the toilet puking my brains out for hours on end...until I got to a point in my life when I started thinking about how guilty and upset I'm going to feel if/when I pass this wonderful little defect along to my kiddos. I used to think that she was mad at me for BEING sick...and now I realize that she was pissed that this is a piece of her that she gave to me, and unfortunately can't ever take back. I never realized how awful it had to have been for my Mom and Dad to watch me be sick, and not be able to do a damned thing about it other than finally drag me to the ER when I said I was ready - there were sleepless nights for my whole family when I'd go to the ER at 2 am, and finally be brought back home with just enough time for my Dad to get ready for work and head back out the door. I know that as a parent, your role is to do anything for your kids, but some parents get dealt a heavier hand than others, and mine are no exception. They've been the base of my support system all along and I'm positive they're to thank for the strength that I have now - that's not even mentioning the financial obligation they had until I could afford my medications on my own, because let me tell you, steroids aren't cheap either. Living with this has made me stronger, and it's definitely made me appreciate the small things, not taking so much for granted, because I physically can't some of the time. Science and medicine are always making new breakthroughs and refining the knowledge that's already out there, so I'm confident that treatment and living with this genetic shitbag can only continue to get better and easier. So you know what, Mom? This is a bond that we share, that is indescribable to anyone else, and I'm ok with it; sure it's a little screwed up, but it's ours.
Stay tuned for an update tomorrow on how day one of being my very own voodoo doll goes.
~Somewhere between always and forever, Chelsea Leigh
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