As most of you are well aware every month when it is time to refill Charlotte's meds I almost always end up crying on the way home, or parked in my space outside the hospital. There is always some small frustration that sets me off and reminds me of all of this messiness; how much dealing with insurance companies, receiving bills for $700, safety of the meds I am picking up, seeing the other families/children hurting is just worlds away from where my life was two years ago. I hate it everytime, I've hated it for almost two years. It's like seeing a picture of someone you loved who has died and mourning them all over again each time. I know I still have a long way to go in accepting this reality of ours, in just finding a way to be okay with it. My psychology teachers advice of "accepting it all", the only way she say's our children can deal with chronic illness such as this is for us to accept it, all of it, the meds, the tests, the pokes, the pain, and even possibly their death. I'm not sure I can accept it all and be okay with it, but my hope is someday I will fake it like an oscar winning actress. Right now I do a good job, walk around with a smile whether I'm happy or breaking inside on that particular day. I really expected to be healed by now, to have dealt with it all and gone back to my happy go lucky life. My 100% belief that everything is "gonna be all right" as the song goes.
I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..
Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)
In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.
On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.
