And then the time came. The dressings were off my neck and my doctor was looking at it closely and the longer it took for him to speak, the more I knew it wasn't a good take. Finally he said that it was probably about a 90% take, which you are gonna think that's pretty good for a body that doesn't do well with taking grafts. Well, yeah, it is pretty good. Problem is, how is the rest of it that didn't take going to heal since my body loves to scar and contract. So I'm going to have to be hyper vigilant in wearing my soft collar and doing neck stretches. And still, even doing all of that does not guarantee it won't scar and contract with the blessed genes I have in my body when it comes to healing. As for my donor site, they didn't say much about it. But I can get it wet now so I can shower with it which is much easier than fastening a garbage sack on your leg so it doesn't get wet.
However, the rest of my appt did not go as well. My doctor's next game plan was not what I had in mind....by far. He wants to give me a 6 month break from all surgeries and doctor appointments...basically get away from all health care facilities for awhile and take some time off. Honestly, I wanted to start crying right there but I held it together and listened to him. He also wants me to start thinking about what I'm going to want to do with my life. He said that he wants to take this time off not only for those reasons given above but also because reconstruction on a burn survivor like myself who was burned so badly and who also does not heal properly is basically a life long process of surgeries. So, to take some time off right now and let my body rest would be the best for me. However, I do not want to take this time off. I hate the waiting game and 6 months of waiting around in this body is my own personal daily Hell. I want shit to get done. Particularly my mouth and lip that I've been waiting and waiting to have done and after it was unsuccessful and my doctor tells me he's going to talk to the burn specialist on the east coast that he worked with for a time about ideas on how to successfully fix it, now I've got to wait 6 months. I want to keep plugging on so that I am able to get going on with my life. His response is that I don't have to wait to get everything fixed before I can start living my life again. Well, I'm not asking for everything to get fixed before I move on with my life. But my reasoning is, the more I keep going on, the more I get done and the sooner I am able to get on with my life because until more reconstruction happens, like for mobility, I won't be able to move on with my life because I have to be taken care of right now because of such issues. I will be staying in this house with my parents, even though I love them and appreciate them very much. There are also insurance reasons that I can't just leave and go on to the next chapter in my life. So I've got 6 months to sit around and wait till it's time to go on with the reconstruction.
Don't get me wrong, I understand, I do understand his reasoning behind this 6 month break. But do you get where I'm coming from in my reasoning for NOT having a 6 month break? I pretty much let tears silently fall down my cheeks the entire ride home. I do have to go back in two weeks to check on the healing of my graft but then after that, it's break time. I almost feel like I'm having one of those relationship "breaks" with my doctor. This is truly going to be so hard for me. I don't know how I'm going to get through it.
"If there is no struggle, there is no progress." ~Frederick Douglass
4 comments:
A break is not permanent. And just like a vacation you have counted down the days to start, it will be over quicker than you realize. It's hard to stop when your mind and body say GO GO GO! but your doctor is a smart man and he knows what he's doing. So, a break it is. Sucks.
In the meantime it is a great idea to step back from your current lifestyle of surgery and recovery and give some thought to what you want to do. No, you can't just move out now and "begin life" so to speak, but you most certainly can begin the process of dreaming, planning, moving forward. I've found that as I've gotten older it's not as easy to just pick up and go. There is more planning involved, more dedication and work. So in a way this is just a natural progression for you. Don't be afraid to figure out how to make some dreams come true. Do some networking. Reflect on your circle of friends and sever any ties that are unhealthy so you can nurture new ones. We can either just let life happen or we can embrace it, the good and bad, and suck each day dry. You, my dear sister, have so much to offer the world with your wisdom and beauty. Take this time to think about how you want to share yourself with everyone and then move forward, one step at a time. You're never alone in this, and you're always loved.
Sarahbeth, I'm not sure if you get the Phoenix Society for Burn Survivors newsletter or not, but here's a link. There may be some stories that you'll find interesting or links to helpful resources.....Steve Gartman http://www.phoenix-society.org/downloads/burn_support_newsletters/spring_2011_20110315_092028_4.pdf
I completely see your point. I think I would want to "get on with it" too although the pain you have to go through during these surgeries seems so hard to take.
Sounds like the doctor is trying to do what is in the best interest of your physical and emotional well being. Yet emotionally for you... getting the lip/mouth fixed successfully is what you really want...it's what you've been hoping for.
Did the doctor not talk to the east coast specialist yet? I thought at your appointment today that they would have mapped something out for the lip/mouth surgery and then presented it to you which would have given you great optimism.
I'm sorry it's been so hard for you Sarah. Whenever that next chapter in your life does start.. whether its a year from now or whenever.. the fact that you have 2 degrees behind you, extreme intelligence and so many other great qualities should give you so much hope for the future.
Hope you are doing ok :-)... And that the leg/neck pain has eased a bit.. and the soft collar isn't too unbearable
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