Boston

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!

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Learning to listen to my body, not my mind!

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.

 

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A special thanks

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.

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I don’t feel my age

It’s been a while since I’ve written.  I am 4 months out from my left shoulder replacement and finished up physical therapy last week.  Life has been busy with getting back into the routine of things.

I am now back to work which keeps me plenty busy.  And this is the first time in 5 years that I’m returning to work and not having to start a process for dealing with another surgery, which is a nice change.

At times it’s frustrating because just a few years ago I was 21 and had plenty of energy and didn’t have to deal with pain and now 5 years later (and 3 replacements later) I’m trying to get back to the life I had.  But at 26 I’m dealing with the aches and pains that most people don’t experience at my young age.

Im hoping that doctors can figure out something to help with these daily aches and pains because it would be nice to feel close to my actual age.

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Dealing with life

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.

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Finding answers

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.

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My hopes for the future

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.

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Saying goodbye to 2014

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.

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Getting to this Point

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.

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Closing This Book

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…

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