Three weeks ago I went to the National Institute of Health to help with research for Saul Wilson Syndrome.
I was there for a week and they ran many tests to learn more and to help me learn more about my health. I was able to find out that I am healthy and for the first time in my life I feel confident in regards to my next several years.
Next year I turn 30 and I will be entering into my thirties with a good understanding of my health, that is something I’ve never been able to say before.
Hello everyone, I’ve been working tonight to add more pictures to my slideshow so check out the new pictures and thank you to everyone who follows the blog.
In order to write a blog you must be willing to share with others your story. You must be willing to open up and talk about things.
All my life I’ve done the opposite. I kept things in. I did this because with everything I’ve faced in life the only option I ever saw was, you stay strong and deal with it.
I built up this wall a long time ago and breaking it down is hard to do. When I was younger I’d write in journals, I still do.
I often feel like there’s this whole other side of me that people never see. That’s kind of how I want it.
When people look at me they see the strong me, the strong person I’ve fought so hard to portray. Only a few people have seen me at my weakest moments, I don’t break easily but over the last few years with all that’s happened I’ve had a few times when I couldn’t hold strong anymore.
On April 14th (at about 3:30 PM) I was at work when my phone rings and it’s my doctors office calling. As I look at the number and start to answer I know this is the call that tells me an update on where we stood with my shoulder replacement. I had been waiting 6 month to hear the update.
Luckily I was in the office and was alone when I got the call because it was a hard call to take and while I had a feeling this might be the outcome hearing it out loud made it all too real.
As I listened to the doctor tell me he had been working with the company to devise a plan the result was that there just isn’t enough bone left in my shoulder to hold the replacement.
I knew right away this meant no new shoulder and also realized that it meant in time I’d lose my shoulder.
For a moment the line was silent as I fought back tears and I realized that this was an extremely hard phone call my doctor had made for he had fought so hard to help me any way he could and now here we were both wishing things were different.
Growing up having surgeries, there was always a solution. This was the first time we hadn’t been able to find a solution to fix the problem.
After a few months of using my shoulder less the pain got better. All the while I knew I was losing function of that shoulder. It was the only way to lessen the pain.
I’m learning how to do things differently. I’m left handed so it’s been a bit of a challenge. You don’t realize just how much you use something until you have to limit what you do or act like you can’t use it at all.
Months had passed by and I hadn’t heard any updates on the shoulder and while a part of me was hopeful a bigger part had a feeling that surgery might not be an option. I tried to stay positive but when we had met with the doctor and talked it over it felt as though the guarentee wasn’t a guarentee at all just a “we will try anything” approach.
At first I said do nothing because I felt as though because it wasn’t a “I know this will work” solution and there were too many uncertainties it felt like the correct choice. But then once I had time to think it over the “what if it does work and I chose not too” kept weighing in on me.
I had to try it even if it ended up not being the solution, I had to try.
Well since its been a year since I’ve wrote anything I guess I need to backtrack and talk about the problems I’ve had with my left shoulder. A year ago my shoulder started to have pain and I tried to work it out, then sought out help from my physical therapist but ultimately I had to go back to my orthopedic surgeon as I knew something wasn’t quite right.
My doctor ordered X-rays and ct scans of the shoulder. After the CT results came back I learned the replacement was failing. After only 2 years of having this replacement in it was no longer holding on and was turning outward.
The options I was given were (1) to do nothing and work on pain control, basically don’t use that shoulder, (2) work with the company and my doctor to try and build a new implant and see if that would work or (3) take the replacement out and lose my shoulder.
At the time I opted to work on the pain control and do nothing because the truth was trying for a new replacement didn’t seem as though it would work. While it was a tough choice to make I had to go with that option and think over the idea of redoing the replacement because it wasn’t a guarentee it would work.
There was a lot going on at that time and everything was just too overwhelming. However about a month later when I was still in so much pain, I made the call and told my doctor “let’s try for a new replacement”.
i havent wrote in a very long time. While a lot has happened I have been busy and kind of got caught up in what was going on and trying to handle everything.
Its been difficult. An outsider looking in wouldn’t know just how difficult the last 9 months have been as I’ve been working to hold it all together and do as I’ve always done and just dealt with each day as they came.
I’ve just returned from my LPA convention in Denver where I was told by a doctor that was at the convention that they had read my blog. It was amazing to hear that she had come across it and she was so glad to have the chance to meet me in person and hear my story.
I often forget how important my story is because to me it’s just my life and who I am…I forget that I am the one writing this story and helping to form information on Saul Wilson Syndrome. There is nothing out there on this dwarfism, I am the voice for the dwarfism.
After being in meetings the last few days and listening to how important this research is, I’m trying to keep in mind that while I may stand alone on the search for answers…I do have to make the stand and work to make the connections. My future depends on it and along the way I may learn more than I intended too.
Hello everyone, hoping to log in more and give updates. Just got back from Boston convention for little people. Was able to meet with the doctors and at this time they don’t have any new information, which is pretty much what I thought they would tell me.
While I was there I googled Saul Wilson Syndrome (thinking I wouldn’t find anything new) but I found a case study that was done on a boy in Japan. I brought the information to the doctors and they did not know of this case.
It’s amazing to me how I have gone searching several times and every once in awhile (not to often) I end up finding another case. I’ve found 2 cases just by typing my dwarfism into the search engine and hoping for the best.
Which brought me back to here. I started this blog because there is nothing out there for Saul Wilson Syndrome. Right now I am fighting for this alone but my hope is one day this will be the database for others…this will be a guide. Others will have the answers that I never did and knowing that gives me hope. It can be years from now, but I am here to be the one who started advocating for the future and to me that is a great thing!
Hello everyone I’m back up and back to writing…so here’s what’s been going on!
After I got through the last 3 surgeries my doctors were asking me “does the pain prevent you from living your life?” And at first I thought “no I still live my life and do what I have to do.”
I guess in that sense it hasn’t prevented me from living my life, but lately I’ve been rethinking that question and I’ve come to realize maybe I wasn’t thinking of the question completely.
Over the past few months I’ve realized that the aches and pains do affect how I live my life. There have been several times that friends have asked me to go out to eat or go do something and it seems like I always have to weigh the question in my head. Usually it ends up being “yes I want to go but how is this going to affect me later that day or later that week?” Many times I have to just say I can’t go because I know I’m tired and I know if I don’t listen to what my body tells me, it will be hell to pay later.
Sometimes it it can be difficult to listen to my body and not my mind because my 27 year old mind says “you’ll be ok” but my much older body tells me “you need to rest”.
So because of that I have learned that I don’t have the energy to do all the things that I sometimes want to do, therefore yes my life has been changed and does prevent me from living my life (somewhat). I’m still pretty stubborn and sometimes pay for it later because I am 27 and I shouldn’t always let it affect my life.
Ive just got to remember to be more cautious and pay more attention to what my body tells me.
For the past few months I’ve been working with my doctor and a media crew from the company who built my replacements. They plan to use the footage for their website and so that the engineers can get an understanding of the people who they are helping when they build these custom implants.
They asked me “what are some things that you can do now that you couldn’t do before your shoulder replacement?” And even though this was a simple question I kind of laughed when they asked me and went on to explain “well you see for me it was a bit different because I still did everything I needed to do with the hurt shoulder.” “The truth is I didn’t let it stop me from living my life, it just hurt whenever I did use it, but I still went to school and went to work.”
So then they asked “in what ways has the replacement improved my life?” ME: “the replacement improved my life because I no longer have pain. I still have limited range of motion but the fact that I am living pain free in that shoulder is the best outcome I could ask for.”
i explained to them that without these replacements I don’t know what kind of state I would have been in and really when I think about it, if I wasn’t able to get these replacements done I would have been in sever pain. I explained to them that there were no other options and I am grateful to have found a doctor willing to go that extra mile and take on my unique case and I am grateful to the company who built these custom implants because I am where I am today because of them.