Patience vs. Frustration

Patience is a virtue.
You will learn patience.
Patience is key.
These are all  phrases I have heard my whole life, but when it comes to limb loss, patience really is a must learn.

I always thought that as my limb lost volume (shrinks) it would be easier and easier to fit a socket, but now I am not too sure how I came up with that thought because for me it has been the opposite. And with the difficulty of getting the socket to fit comes one good thing (besides a proper fitting socket of course) and that is learning patience. It has taken almost 4 years of being an amputee to realize that this has been a good thing.

There comes that time when you put on your leg and walk; you begin to feel your socket starting to not fit….well, fit. In my own experience there are things that my prosthetist can do to help the fit for a length of time. But eventually there just isn’t anything that can be done and it’s time to get a new properly fitting socket. To someone who does not wear or have a prosthetic, then best way I can explain this feeling is that it’s similar to wearing a shoe that is too big; you can add socks to take up room, but it never will fit the way your actual shoe size does.

For me what seems to be the trend is that I will get a socket designed for me, wear it until it is so big that I cannot possibly add another pad or sock and then it is time to start the process to get a new socket. Each time I get a new one, the length of time I typically wear it for doubles from the last socket I had (i.e first one 6 months, 2nd socket 1 year, 3rd socket 2 years….etc.). So here I am because the process has started over yet again. I haven’t ever really been the person that needs things to be done right this very minute, but I also haven’t been someone who loves waiting for something. Especially when that something has everything to do with how I get around on a day to day basis. But I have learned how to be pretty patient overall with how the process goes. Typically something that takes a few weeks. Well not this time.

It Starts

A few months ago my socket started getting loose on my limb and I was having issues with keeping suction. I went in to see my prosthetist and we came to the conclusion that it was time for a new one. We casted right away as usual and that went well, then it was time to wait for my liner which takes time to make and ship. In the mean time I am still going back and forth from my socket that is fitting horribly and crutches. My practitioner told me it would be a few weeks and I would be good as new. When the liner came back it didn’t fit my leg. I didn’t understand why it didn’t fit because the casting is an exact replica of me, so what the heck? Well then it dawned on me that I had been working out more now than ever before, both with and without my C-Leg. My doctor asked me if I gained weight, which I told him I certainly did not, but rather that I bulked up from working out.

We realized we were going to have to make some adjustment and have the liner remade again. A week or two later we get the liner again and it seemed to fit well this time. Okay great, so now it should just be a few weeks till we are totally finished because we have the most intimate part done. A temp socket was built for me, we got all of the adjustments, tweaks, alignment and everything set up properly. I was told it would be no time and my socket and leg would be ready to go. Awkwardly enough, I was starting a new job that day. Lots of new things all at once, swell! New socket to get used to, new faces to meet, new procedures and responsibilities to understand. Can you say overwhelming! The last thing I was focused on was how my leg was feeling, I was just trying to remember people’s names and make sure I didn’t fall on day one.

The aftermath of not paying attention to my body

When I got home that night my leg was so sore. I knew before taking it off that things were not gonna be good. Just as I suspected, it wasn’t. There was a spot right near my skin grafts that had rubbed and blistered from the liner and being in the chuck socket all day. There were close to ten tiny blisters in a line right on a weight bearing spot. GREAT! Not only was this whole getting a new leg process taking way longer than I thought, but now there was no way that I could put this leg back on for work the next day. I tried to think what could have caused this to happen, but being an optimist (and maybe busy) I just told myself that I didn’t have things lined up properly (being so new and all), and that I needed to let things heal and try it again. I know probably not my smartest decision. So for the next 3 days I went to my new job on crutches.  Hey, it wasn’t the worst thing that has ever happened and it got any questions out of the way right from the start.

After my leg healed up, I thought I would give it one more go ahead with the temp socket considering when I tried it on the time before getting blisters it was fitting great! Yeah, no. I wore it another day at work, only to get home to find a deep cut/scratch in the same spot the blisters were just a few days prior. So obviously something was not right. I waited another four or five days before my scratch healed up. I headed back to my practitioner to get to the bottom of things and get something working right. Well by that time I had been out of a leg 8 of the last 9 days. That was totally out of the norm for me because since I started walking without assistance (cane or crutch) in early 2011, I hadn’t gone more than one, lazy, day without wearing my leg. You might be able to guess what happened next. My limb swelled up so much that by the time my scratch healed and I got back to see my practitioner… I couldn’t even get into my old socket that was HUGE before!

Throw back Thursday style

My only next option was to go back in time, dig out the good ‘ol Ace bandages and wrap the daylights out of my little leg for a while. Good lord, I forgot how big of a pain that was. Trying to find JUST the right amount of tightness while not cutting off my circulation, having the bandages slide down my leg while walking. Between the blisters, cuts, wrapping, crutches and ill given time frame… well I was pretty frustrated and losing any ounce of patience I had. It’s like really, my time frame getting pushed back, again?? It was at that moment in which I told myself and everyone else who works on leg stuff with me to please no longer set time frames of how long something will take. I didn’t want to hear that I will be at x in my recovery in x amount of time. When I am told or tell myself something will happen by this or that time, it almost always does. Of course only within things that I truly can control. But I get really frustrated when I am told often times that something will be ready on this date or this will be happening by then because truth is nobody ever really knows that is what will happen!

What I Know Now

When I was learning how to walk with one leg on crutches and then also on my C-Leg, many different people from PT to OT, from the doctors to the nurses, they would tell me “You will be doing all of your normal stuff this summer”, “you will be able to do everything on crutches by March”, “You will be healed and wearing a leg on a regular basis by the end of this month”. And here’s the problem…. none of them really knew if that was accurate or not because you never know what will happen. I was being placed into the pool of “average”. And the bigger problem was that my amputation and surgeries were not anything close to average. Almost all of the estimated goal times were very far off where I actually was and that was hard to swallow.

I am sharing this not because I am trying to be rude, degrade anyone or set too high of standards, but goals and time frames are what keep me going!! And I tend to get hard on myself when things are not ready when they are supposed to be (within reason). But sometimes it’s not about patience but rather false expectations. I have found I am a lot happier and more understanding if things take a little longer than I might think they would. Getting an estimation rather than a date seems to work much better. It has helped and I really wish that I would have done this earlier! If the goal is big enough, then there is nothing wrong with setting a wide open time frame and one that is realistic for me specifically. Since making a conscious effort to not focus so heavily on a time frame; I am a much happier person. There is a fine line between advocating for yourself and setting too high of expectations of others. Finding the middle is key.

Finally the New Socket

Good news is- I finally got my new socket! After wrapping my leg for weeks, being on crutches for a month, recasting and getting every detail exactly right, I got my new socket!! It is beautiful and I love it. It took a few weeks to get used to, being that the liner, inner socket and outer socket are all brand new. My socket was build different this time my limb has built up muscle and will continue to do so as I work out. My hope and advice within this blog is to be an advocate for yourself, speak up and express what you feel is right for you. Take the necessary time to get every last detail spot on with your fit. It is well worth the time, energy, frustration and wait and keep at it regardless of frustration and what your expectations are because everyone and every socket is a little bit different than any others ever made.

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