Getting older is never an easy thing. I live with the very real and very scary fact that I have a 75 year old body trapped inside me at age 26. We’ve learned that my body is aging 3 times as fast as I am and there’s not much we can do to prevent it. I can take medicine that will help, but I don’t think it will stop or reverse it. The only thing I can do is “deal with it” which I’m usually pretty good at, but after years of “dealing with it” it’s becoming harder to do.
I’ve “dealt” with these types of problems all my life. I try really hard not to dwell on the bad stuff but after awhile you just get tired.
Tired of doctors, tired of medical information being thrown every which way, tired of medicine, tired of surgeries and anything else in between. Tired of being given endless amount of information but never any true answers.
At age 26, I think about many “what if” situations but in my life my “what ifs” have a way of becoming much more real than most peoples. I put a lot of thought and consideration into these situations because they usually become real or at least have a way of changing the direction of my life. About the time I think I got it figured out, I’m sent down in another direction and have to figure out what it all means, and usually prevents me from getting any answers.
I hope one day that will all change and maybe I will have answers for anyone else out there like me. My blog is the only information that’s available for my syndrome. Yes there are a few medical journals from years ago, but as far as newer documentation, this blog is all that is out there. My goal is to reach others with Saul Wilson and to give them a voice and let them know they aren’t alone.
I remember when I was younger (probably early teens) I told my mom and my aunt that I was done with the doctor visits and trying to find answers and finding someone else with my dwarfism. I was tired.
Tired of the doctors giving me that puzzled look like they had no idea what to tell me. Tired of fake promises. And the time they diagnosed me to myself, well I knew then that it was pretty hopeless.
By some chance coincidence a few years ago I did find another girl out there with my dwarfism. It was pure luck that I found her YouTube page and now I do know someone like me but unfortunately both of us aren’t any closer to answers we’ve been searching our entire lives to find.
As I get older I realize the questions I’ve always had never really left me, they were just buried inside because I’ve always known that I may never find the answers and that’s hard to grasp.
So many little people go to the conventions and meet with doctors and other people in hopes of getting answers but I’ve never had that privilege. It’s taken 26 years for me to get recognized under the primordial dwarfism group. I really don’t want it to be another 26 years before being able to take another step towards answers.
We need a faster process.
What do I hope for in 2015 and the years to come?
I hope for no more surgeries and so far that’s looking promising.
But I would really like to learn more about Saul Wilson syndrome (my dwarfism). My life has been the trail and I’ve been paving the way for other people with my dwarfism. But unfortunately we still don’t know much.
At 26 years old, I’ve only met one other person with my type and we don’t even know if there is anyone else out there with our type. It’s very frustrating at times because it feels like there are so many questions and no answers.
Being the pioneer of it all is difficult. I don’t know how many times I’ve gone on the internet to research my dwarfism only to find stories of myself and nothing else. I know my life and what I’ve been through and that doesn’t help me.
I’m hoping this year doctors will have more research in our study and be able to tell me something.
Well it’s finally New Year’s Eve 2014 and what a year it’s been! There were definitely hard times but there were also great times.
I started off the year with a new hip and high hopes of my shoulder replacement being just around the corner. But as everyone knows it wasn’t until November that I got my new shoulder.
Unfortunately I spent most of the year waiting on that phone call and when the months continued to pass by with no word, it became hard to keep my head up. I spent most of my time buried in work because it was the only thing that could help distract me.
My hard work paid off and I got the promotion I was hoping for and then a few weeks after that I got the call from the doctors that they had a hopeful date for surgery. Finally after several hard months everything was starting to pay off and get better.
Now I’m not only ending my year off right but I’m closing the chapter to this part of my life and looking forward to the next several years where I can finally start to live my life without the complications of medical problems.
Five years is a long time to wait but I’m starting to have a good feeling about 2015…hopefully it just continues to get better and better.
Thank you to everyone who has helped me get through this year, I couldn’t have done it without you all.
I was 21 years old when I started fighting this battle. I was at an age when I was trying to discover who I was and who I wanted to be. At that time I was thinking a lot about becoming a writer, or I wanted to write a book at least. I also toyed with the idea of motivational speaking. God knows I have enough life material to last me a while.
But somewhere along the way I lost initiative. I was still recovering from my past medical experiences, never fully getting to the point of getting past them. I was writing a lot but it was more therapeutic than anything else.
After not fully coming to grips with everything and still feeling like I needed time to heal, well that’s when I got another surprise of my life. I needed a right shoulder replacement.
I remember thinking “ok I get through this and then I’ll be ok” but it wasn’t that easy. Instead I embarked on my new adventure of aging bones and joint replacements. Not knowing that the one replacement was going to lead to another and then yet another after that.
Before I know it it’s 5 years later and I have 3 new replacements. Now I’m once again back to the point where I was at age 21 trying to come to grips with everything.
I’m tired and I’ve been tired for years now. I never wanted to be the type of person who asked “why me?” It’s never been in my nature to do so but here lately I find myself doing just that.
Its hard…I can’t deny that anymore. I know in time things will get better, but that’s just it time has never been on my side, so until I actually get that time…well I guess I’ll write and whoever wants to continue following me on this journey is more than welcome.
I don’t anticipate to get there quickly, but I have hope that it will happen. I may not be writing my book that I always thought I would write, but this journey has lead me to this point and I think through this medium people have learned more about me.
As we draw closer to the end of the year I can’t help but to think back to what a year it’s been. I spent the entire year fighting to get a new shoulder. That fight was something I struggled with all year long but I had no other choice. At times it feels like I lost a year of my life because of that and in retrospect, I did. In retrospect I’ve lost 5 years due to all these replacements.
I tried my best to also work towards goals I had wanted to achieve and even though I did achieve them it wasn’t as rewarding as it could have been because I had an underlying more serious issue I had to focus on.
All my life I’ve had to fight and be patient. The 2 do not go hand in hand. I was raised to fight no matter how hard it was, and most of the time it was hard. Trying to mask all those feelings and trying to not let the stress of it all get to me, well let’s just say there were quite a few days that I couldn’t mask the pain and the struggle and the side of me that I swore no one would ever see finally came to the surface.
Its hard to continue and work and strive for that promotion when in the back of your mind all you can think about is “whether or not the doctors will call today.” Living every day life becomes more and more difficult.
But now as I’m saying goodbye to this year and the past 5 years, I’m hoping this chapter is coming to a close. Or better yet I’m hoping next year can be the start to a new book. I’m hoping to end this book called “Monica’s Medical Journal” and maybe I can start the book called “Monica’s Life”.
At this time however I don’t have high hopes for that, but a girl can dream can’t she…
This surgery has been very surreal because after years of fighting to hang on, now I’m at the point of trying to find out if this is really the end of this chapter? I think a part of me believes it isn’t over yet and until I finally get that final say it’s going to be difficult to get through.
I keep having people ask me “am I glad it’s finally all over?” and I don’t know the answer to that. Are these replacements done? Yes they are. Am I on the road to recovery? Yup I sure am! But there’s still the underlying issue of my aging body, that is 75 years old and I can’t reverse time and fix all that.
About the time I’m suppose to be healed, I’ll be going back to doctors for medicine with the aging bones. When i had this surgery my bones were “ok” and even though that was great to hear for surgery, it didn’t give me that great feeling that “good I’m at the end of all of this”. I know this all isn’t as bad as it could be, but I guess in my mind when this all started happening, I had this idea of everything being “fixed” and that would be the end of it all.
I had high hopes of getting rid of doctors (at least for a few years) and getting back to a “normal” or at least “average” life.
Having lived a life of so many medical issues it’s hard to see the big picture sometimes, it’s more like a bunch of clustered pictures that you randomly sort through, hoping one day it all makes sense.
What do I dream about? I’ll start with going one year without doctors, then I hope to move up and gradually hope for years of being free from medical issues. That’s my new dream.
December 14, marks a memorable day for me because 3 years ago today I walked across a stage and received my college diploma! That day I achieved my main goal in life. You see when I was younger I was told by doctors that I would never aspire to such goals. But that day I proved every one of them wrong and with each step I took across that stage made it that more powerful!
On the day of graduation a good friend of mine bet me that I would be back in 3 years for grad school (I insisted I wouldn’t and no I’m not going back). School never really was my thing. For most people, college is about finding yourself and finding out who you want to become, but I always knew who I was and what I wanted out of life.
The bet meant more than a simple bet because on that day he knew I had achieved my greatest goal and that walking across that stage was all I ever really wanted. Of course, that’s not saying that he wouldn’t have been thrilled if I had chosen to go to grad school. He knew I would do anything I set my mind too.
Now this day is a great reminder of all of that. I will remember that day for the rest of my life.
After over a year of waiting…I finally got my new shoulder that I desperately needed!
It was a rough year indeed. We started out thinking getting the replacement would be no problem, because I’ve had a total shoulder 4 years ago and had my total hip last year. But over the years rules have changed, making this replacement a fight to the very end.
I had a great doctor fighting for me and even though I would get very frustrated I knew he was just a frustrated as I was.
It has been a week since surgery and I am just amazed at how well things have gone so far. I’ve been having some nerve pain in the elbow, but other than that, the shoulder pain has been minimal.
I spend most of my day exercising and massaging my shoulder and elbow.
It’s a weird feeling being able to rub my right hand over my shoulder and feeling something there. There is no longer a lot of pain. For the first time in 4 years I don’t have the pain that goes along with the arthritis in my body.
I am finally pain free from the pain of 3 joints that were very bad off. I still have a long road ahead with rehab for the shoulder but hopefully once I get down that road, things will finally start to get back to my “somewhat normal life”.
The countdown has begun! I am (hopefully) 47 days away from surgery!
The past year has been tough to get through. The waiting was really starting to get to me. Not many people knew just how tough it was to get through each day without hearing anything from the doctors.
I have been needing a break for a while but have been holding off because I knew surgery was coming. I’ve been working non-stop for the past year, waiting patiently for the call. I worked to keep busy but as the days came and past, I was wearing down more and more and am needing a break.
Surgery wasn’t my “ideal” thought for a break- a vacation somewhere would be much nicer, but this year I have to take what I can get.
Next year will be different. I’ll be able to go back to work refreshed and ready to take on the new year. Hopefully my medical challenges (or at least most of them) will be a thing of the past! Hopefully I can start to figure out what is planned for my future.
This battle and these past 5 years are not what I thought my twenties were going to be about, but with my life, nothing is ever what its suppose to be.
It’s exciting to think that in a few months I will be able to put this all behind me and look towards the future and whatever it may hold.