The last several years have been a roller coaster of events. Since 2010 life has just seemed like its been one thing after another. Since 2010 I’ve had 2 shoulder replacements and 1 hip replacement. I was finishing up college and trying to find out what I wanted to do in life. I was trying to find out what career I wanted. I started to focus on my life and where I was wanting it to go and what I wanted from life.
But I quickly became stuck in this pattern. I realize now I wasn’t exactly living so much as I was just going through the movements of each day.
Over the last year and a half I really started to lose focus of things.
I lost my dad a little over a year ago and that was hard. It has taken me this long to heal from that loss, but I am working on that now.
Last year I lost my grandmother too. She was a great lady who I loved dearly.
I am hoping to start writing more freely with this blog (or at least with some things) because writing has always been my best form of therapy and one day I really do hope my story is out there for others to read…the whole story that is, so far I’ve picked and chosen what I want said.
I don’t know if its this new year, new attitude kind of thing or what but I haven’t been actually living life for a long time now and it is time I need to get things back on track.
I went in November to see how my left shoulder has done over the past 6 months.
I got good news! The doctor said that the X-Rays showed no changes over the last six months since I had had my last check up. So unless I have more pain or something happens, I was cleared for a year!
When I use the shoulder its all about pain control. While I limited the use of it drastically, I still try and use it best I can. I have learned new ways to adapt to things and maneuver the ways I perform tasks such as lifting things or even going to reach for something.
The only times I can really tell that I am limited in the use of it is when I go to outreach for something. The most common example of when this happens is when I am at work and I am running the register and I go to hand someone back change.
While I know the customers have no idea just how much of a struggle it is for me to outreach the money to them, every single time I go to do so I notice the limited motion my arm has.
There isn’t a single time that I go to do this that I do not notice this limitation, but I make do with what I can because the alternative is not having the shoulder and function of that shoulder at all. So for now I hold off on the surgery until absolutely necessary and that can be years from now or it it could be months, but I won’t let it stop me from doing what needs to be done now.
November is finally here!! I’ve been waiting because at the end of this month I go for an update on my left shoulder and I find out if the replacement is still doing ok, or if I will need to plan for surgery so they can take the replacement out completely.
It’s been six months since the last update and at that time it had already gotten worse from the previous check up.
I am nervous about what the doctor will tell me, but I’ve also known for a year that the replacement is failing. For the last year it’s been about pain control and while it doesn’t hurt as bad as it was a year ago I can tell its growing weaker and trying to hold my arm up and use it, the little bit that I do, causes it to grow tired.
I know it’s just a matter of time and in 3 weeks I will know just how much time I have left.
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.