One of the most important things I learned, both pre- and post-tx, is the importance of a good support system. Now this might sound like some psychobabble, but its importance cannot be underestimated. Without a core group of people that you can depend on for various things, from helping with grocery shopping to just coming over and listening when you're having a meltdown, these folks are very, very important. They're so important, in fact, that having or not having one is an important part of the transplant evaluation, because if you don't have people to help you, you can (and probably will) be so overwhelmed after transplant that you won't be able to care for yourself properly. And that's no good since it jeopardizes the success of the transplant.
I have been very fortunate on many fronts. My family, especially my parents, have always been fantastic when it comes to dealing with meds, talking to doctors, and getting what we need. That doesn't mean that we haven't had our moments--far from it. There have been plenty of swearing, yelling, throwing things, and generally questionable practices. :) But my family has always been on top of getting the meds, taking me to appointments, and making sure we (OK, I) was really, really compliant. That's very improtant when considering transplant, because if you aren't compliant before, what indication does the center have that you will be after? My younger brother and sister were also great, even learning to mix IV drugs and give me the meds when my parents couldn't do it. I've seen plenty of families where the parents are not interested at all in their child's care, with bad results. I am very fortunate that I was not one of those kids.
Secondly, and maybe even more important, are my gerat friends. It can be so hard to find people outside your family who are willing to befriend someone who isn't "normal." But in grade school, and, later, high school and college, I was blessed with great friends who were willing to be buddies and take on all my issues in stride. Tiffany, Branden, Milia, Troy, Tom, Sean, et al. , have been particularly great and I want to thank them. Now if you've read my post about the roomie from Hell, you know that this is often not the case. But these guys are awesome. I can test my blood sugar in front of Tiff, have IVs given, whatever, and she doesn't bat an eye. That is so valuable in a friend. They've come and visited me in the resort, come over when I've had IV drugs to do, and been very compliant whenever I couldn't drive or if I had to leave a party early to do drugs. Sure, they weren't perfect, and there were times they would "forget" I wasn't normal, but that's better than it being a constant reminder.
So many people do not have the capacity to deal with those of us who are not "normal." To paraphrase As Good As It Gets , it's often a "bit too much reality" for everyday. Being friends with someone who might die is hard for people. It's disconcerting to visit a 15 year old in the hospital and see IVs and such, but it can be even more jarring at home, when syringes are in the fridge next to the Coke and a sharps box is next to the trash can. Some people were incapable of providing the emotional support I needed, especially as I got closer to transplant, and could do less and less but needed people more and more. It was scary and I needed others outside my family to talk to, since my family was just as stressed as I was. And I was their daughter/sister--I couldn't be completely open with them. I felt a strange desire to protect them from how I really felt, something that's not all that uncommon among people with health issues.
I am so grateful to all these people who have been my supports. I don't know what I would have done without them. I never taken them for granted and I am so lucky that they were there--and continue to be here--with me as I go along this road. Without their support it definitely would not have happened.
No Poet at Inauguration 2017
17 hours ago