Monday, March 25, 2013

What's Important to Remember

I have club feet. I am not club feet. They are a part of who I am. They are not who I am. 


I experience chronic pain. I am not chronic pain. Pain is a part of who I am. Pain has shaped my life in many ways. Pain is not my life.


I have struggled because of my club feet and pain. My struggle is not just my club feet and pain. Struggle is a part of life. Struggle is not all that life is.



All that I am includes things that are difficult, and things that are less so, things that are neutral, and things that allow me to soar, things done to me, and things I do. I am not any one of these things. I am all of these things.

Wednesday, March 6, 2013

New Guest Post - Lacey Gets Her Wings!



 I am thrilled to be able to share the following guest post with you all! Lacey Phipps is well known to many clubbies, both for her fantastic dance moves, and her extraordinary decision to undergo double lower-leg amputation, in order to end years of pain and frustration. Her decision, and her manner of dealing with all that decision's ups and downs, have been instrumental in helping me change my own perspective on amputation as a therapeutic solution, but for a number of other clubbies, as well, who are now making that same brave decision. So - I will let her tell the story directly!


My decision to amputate came from the fact that my feet were no longer useful to me. I was born with a condition called clubfoot. I was treated with a modified Kite method by Dr. Charles Johnston. When this didn’t work I had several other operations in the hopes that they would “fix my feet”, these included tendon lengthening, a triple arthrodesis, and when all that failed they just kind of “put together things that looked like they might fit”. After 20 years of this I got tired of it. I had been in a wheelchair for years by the time that I decided to have them amputated, and finally I had enough.

My first suggestion to those of you who are considering having this done is be sure you’re really ready for the consequences. I didn’t realize how hard things were going to be when I did this. You don’t realize how important legs are in simple things like rolling over in bed or putting pants on! Getting onto the toilet is an adventure as well, as are a million little things that you take for granted every day! You have this time between getting them amputated and getting legs where nearly everything is impossible. For those times you need a lot of people supporting you! When I first brought up having my legs amputated everyone was shocked for one, and some got over it sooner rather than later. I was tired of being dragged around to all these other doctors and never getting any kind of results!

Second suggestion; get a wheelchair after you have it done. You may think that you’ve got amazing crutch skills, but trying to balance on one fake leg and crutches is almost impossible! The equipment you’ll need is an important topic. You’re going to need things like wound care supplies for when you get home, a shower bench, a transfer board for getting in and out of the car when you don’t have legs on unless you’re really strong, a wheelchair and, a good set of forearm crutches ( I highly suggest Walk Easy). It’s pretty expensive but insurance should take care of most of it!

The next thing you need to think about is the actual act of going in and submitting to having your leg amputated. My experience was at a children’s hospital, so for those of you not lucky enough, or unlucky depending on how you see it, to have it done at a children’s hospital your experience may be different. All I remember was going into the holding bay for those having surgery, having them put something in my IV and I was out. Waking up was weird especially after the second one. After the first one I was pretty much sedated for 3 days, but after the second one I remember everything from waking up and the sun was down, to having a friend bring me a blanket and her rubbing it on my face for some reason. 

The next step in your recovery will be going off to inpatient rehab, depending on how good your insurance is again. Here you’ll learn how to do everything for yourself again. I was only here for a couple of weeks each time, but it helped tremendously.

I wish you peace and I assure you as someone who’s been through this already that it will all be ok! You’ll come out better after all is said and done with a new lease on life! If you’d like to contact me because you or your child is considering amputation please feel free to send me a message on Facebook. Just leave a comment below and I will get in touch! My prayers are with you in this difficult time!



So many thanks to you, Lacey! We all benefit from your hard-won wisdom!

 

And to you other clubbies, or any doctors who lurk here from time to time - guest posts are urged, welcomed, and really nice to see. Help your fellow clubbies with a bit of your story, or solutions that have helped you. I look forward to hearing from you all! 

Oh, and most importantly - All guest posts are vetted by me before they are posted, as no one can post to this blog except me, regardless of what some may think!