It’s complicated!

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Have you ever been super excited for something and you wait and wait and then the time comes and, yeah, it doesn’t go as planned? It’s kind of a bummer, right?!

I headed to Boston on Friday so I could try on several compression garments with the hope of getting out of this orthopedic boot and into a sneaker. A SNEAKER! I haven’t worn a shoe on this foot in 3.5 years. Can you imagine?

So at the crack of dawn, off we went. I was hopeful that things would go well and was prepared for any bumps in the road, such as the foot opening up again. My lymphedema therapist allowed me to bring several different samples of compression garments that may possibly work.

It is a rather complicated situation. My lymphatic system has been compromised and we have worked very hard to bring the swelling down and maintain that. I had 750ml of fluid from the knee down, and now it is controlled and that fluid is gone! In order to manage the lymphedema, I go to therapy a few times a week and my foot is wrapped every single day. And when I say wrapped, there are several layers of foam and short stretch compression bandages to control the swelling.

With these wraps, I cannot fit into a shoe/sneaker. So the idea is to get out of the wraps and into a compression sock/garment that will allow me to fit into a shoe. The garment will control the swelling while being less bulky.

In addition, I will transition from my orthopedic boot and get back into my carbon AFO brace. That is, if this type of brace will still work with my delicate foot. From the infection I had in my foot, it left the bone and Achilles tendon exposed for 9 months, and the numerous surgeries to heal that area has left it very fragile.

To add to this, since my new hip dislocated, I am at a 60 degree hip restriction for life. Yes, folks, for life. Do you see where this is going? There are so many moving parts! The compression garments need to ensure that there is no “pulling” or “shearing” in the foot area so it doesn’t open up that old wound. The garment also needs to be something that I can get on and off by myself which is no easy task with my hip restriction.

My carbon AFO needs to be able to support my drop foot but it can’t be to snug around the back of my foot, because if it is, it will open that fragile skin.  We won’t know if it will work until I can actually put it on.

The folks in Boston did not approve of the compression garments that I had with me. They believe I need to have a custom garment made so I wasn’t even allowed to try them on!

So the plan is to continue with the wrapping and orthopedic boot for now. I see my orthopedic surgeon in 3 weeks and we hope that someone can be there to see about having the custom garment produced.

We all agree that it is better to do this right the first time, even if that means I need to wait a little while longer. It’s been 3.5 years – a few more weeks and/or months isn’t that bad.

It’s complicated but progress is being made and that is a beautiful thing!

For now, I will continue to kick butt in physical therapy! My hamstring muscles are stronger, which is awesome. My quad muscles need a LOT of work and it is a struggle! While I still can’t raise my leg on my own, I practice every single day and I am confident that I will improve. The flexion in my knee needs to improve greatly and we continue to work on that as well. “Normal” extension in the knee is 140 degree flexion, and I am currently at 40 degrees. So there is plenty of work to do.

There are days where it feels overwhelming, but as long as I see progress, I feel encouraged. I will NOT be defeated!!

If you are out there reading this and have similar struggles, hang in there!

Until next time, be well and go out and do a random act of kindness.

Jewels

 

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