Light at the end of the tunnel

First off I wanna apologize for the lengthy pause of posts. These past 4 weeks have been some of my darkest days dealing with my disease. As most of you know I had a series of mishaps, I ended up breaking both of my ankle braces in a matter of 3 days. When the first one broke i was able to get in the next day and get it covered by its one year warranty. At that time I sent the broken brace in and had no choice to go without a much needed brace on my left foot while i waited for my new brace to be made and shipped from Sweden. Two days later while trying to keep up with as normal of activities as possible my right ankle brace split. It still had some strength to it but I had no choice but to stop wearing that brace as well due to the high risk of getting a carbon fiber sliver in the shin. If you have ever gotten a wood sliver …. well lets just say its only a fraction of the pain and discomfort as a carbon fiber sliver. (much smaller and breaks off easier. which makes it next to impossible to remove it all on your own) When I called my Ankle brace provider to inform them that now this one broke they had me come in yet again. Upon arriving for this appointment I was informed that the warranty had expired and we needed to go through the process of having my doctor sending a prescription and then casting and ordering new ones. In the mean time they were able to do a temporary fix to get me by.

Then came a decision that didn’t come easy for me. The braces I wear are Allard Custom Blue Rockers. I have been wearing this style for the past 8 years or so. It wasn’t until I started wearing these that I got the confidence to wear shorts in public. And finally felt like I walked normal enough that people wouldn’t notice my strange walk. It got even more reassuring when I’d tell people about my disability and they responded with saying they never realized anything was wrong with me. A true testament to these braces and to my internal strength of keeping it together. A brace I would rather not give up. The downside though is they are made in Sweden, Yes Sweden! With them needing to be shipped over seas it takes a lot longer to get the new braces in. With needing insurance approval and then shipping it can and usually takes 3 months from casting to receiving the new braces.

Which brings me to Insurance. A great blessing to have it cover most of the cost, but I’d love to sit down and chat with them about their policies regarding AFO’s (Ankle Foot Orthodics) Afo’s are covered ONCE every 5 years. That’s not to crazy but here is where it gets interesting… I have been in AFO’s for 18 years of my life now and the longest I have ever been able to get a pair of AFO’s to last me is 18 months before they break. Sometimes I’m able to get them replaced under warranty which is usually 6-12 months at best and other times I have to fight for new ones and have multiple doctors prove medical necessity and then wait months. So why dont I just wear an old pair or get a second pair? That would be ideal but insurrance only covers 1. And by the time I get the new ones my old pair and broken and no longer covered to get fixed.

Back to the decision I needed to make. With a 3 month wait looming over me with trying to get my beloved Custom Blue Rockers. I started to look into other alternatives. I found the Kinetic Research Side Element AFO’s. They are made in Florida and are still Carbon fiber. My orthotist has been amazing. She shows me different options that she believes will help me but ultimately  leaves the final choice to what I feel will be best for me. We discussed the side element and pros and cons. They only take a month after insurance approves them. Sure beats 3 months. But then we discussed an option i swore I would never even consider. Thick Plastic AFO’s! The type of braces that kept me out of shorts throughout high school. But the Pros were pretty good. #1 They are Cheaper, #2 Insurance approves faster because its not carbon fiber, #3 I could get them 10-17 days after approval, #4 They are made in house, #5 They are easier to adjust and relieve areas of pressure, #6 They can make them into the Side element design that I really liked. Which all lead to me taking a huge chance And choosing the quickest route.

Being without my proper bracing it caused stress on other body parts, such as the tops of my feet, ankles, knees, and hips (which is the next major muscles and nerves to deteriorate), Back, and even extreme nerve pain. I even ended up breaking another toe, and experiencing a lot more pain than i’m used to.

New afo
My New Hard Plastic AFO
Kinetic Research Side Element AFO That inspired my new AFO’s
blue rocker
Custom Blue Rockers that changed my life

This past week I got my new Plastic AFO’s and even the original Blue rocker that got sent back under warranty. And for the first time ever I fell into a loop hole and got a backup pair of AFO’s. So hopefully the next time my AFO’s break I will not be without during the lengthy process.




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