These past few months...

So much has happened since my last blog entry, it's honestly a bit surreal. As I said in my previous entry, I had my 38th surgery back in January; actually I had two surgeries in a two week period for completely different things. 

But in the time since then, I have been lucky enough to accomplish so much! This is my first semester, since going off to college, that I am actually able to have a job. I won't lie and say I'm never in pain or don't come home from the day and am completely sore, but that's just part of the life of living with Sticklers. I am actually feeling so much better about myself and even more proud of myself with everything I have decided to take on this semester along with the fact that this will be my final semester of class before I start my student teaching in the fall. It's crazy how quick everything is going by and that I'm actually feeling pretty healthy at the moment too! But, I'd be lying if I didn't say that I'm honestly waiting for the next shoe to drop... It feels that there is always something happening to me, roughly every 3 months, and I'm getting close to my three month marker so I'm kinda just waiting to see what happens next with me medically, but I'm also praying to God that nothing happens cause I just don't know how I will handle it. Just in my past 5 years of being away at college, I have had about 11 different surgeries... And, ya know what, I can't help but be kinda proud of myself. I didn't quit school, I kept with it, and now I'm graduating!! Truthfully, there were points in my life these past few years that I just didn't think I was gonna make it through this whole college thing, but I'm so glad that I have. Anyone who can prove to themselves and others that they can do what they want in life and succeed with it should be incredibly proud of themselves. I know I am. 

Life as a Professional Patient

It just depends on how relaxing and 
So... I like to call myself a professional patient; I mean I think that is fair considering I have practically grown up in hospitals, some of my greatest heroes are doctors, and I just had my 38th surgery a few weeks ago. Life as a professional patient can be pretty rough obviously, the pay really isn't good, but you do get to utilize a lot of vacation time! Of course, it just depends how relaxing and refreshing that vacation time actually is. Take this pat winter break for myself for instance... I anticipated spending 6 glorious weeks relaxing and enjoying my freedom away from school, and instead I ended up spending it chalk full of doctors appointments and authors. By the end of January, I ended up having my 38th surgery, so it's safe to say that I didn't quite spend my vacation the way I originally planned or anticipated...

But, that's okay. Even if it was spent dealing with doctors and recovery time, I still wouldn't trade my life for what it is. Would I like to not have to deal with so much medical stuff, yes of course I would. But, if I didn't have to deal with all my medical stuff or at least most of it or maybe even just some of it, would I still be the person I am today, and would I even like that person. 

As hard as it is living with an invisible disability or even being labeled disabled, it's hard to imagine life any other way, and I honestly don't know if I want to. 

Living with an "Invisible Disability"...

Well, if you have watched my introduction video about my story and living with Stickler Syndrome, you know that I address the issue of always wishing I could be what I thought was "normal", meaning having a life without all these medical issues, well I'd like to kinda address that again but in a different way. 

As someone living with Sticklers Syndrome, I know that it is a syndrome that is often considered to be an "Invisible Disability" meaning when you look at me, it isn't directly obvious that I have any sort of disability or even anything wrong with me at all, and that is something I feel that I am reminded of on a daily basis. I cannot begin to explain just how many times I have heard, "oh, well you don't look disabled", "you couldn't possibly be physically disabled, you don't have a wheelchair", "well you look normal", or just plain ole' "you're not disabled". When I hear these sort of comments being made to me, normally it is because someone thinks I'm faking it or thank there is no chance anything could be wrong with me cause I look normal to them. Don't get me wrong, it is nice to know that it isn't incredibly obvious that I suffer from physical disabilities, but that also is a curse just as much as it is a blessing. 

Here is an example of something that has happened to me on many occasions. Due to the fact I have had 36 surgeries and certain physical activities like walking long distances can be very debilitating for me when I'm dealing with stuff post surgery or possibly dealing with a new dislocation of my ankle, knee or even my hip, so I have a disability parking pass. I legally obtained this disability parking pass and only use it when I desperately need to due to my medical issues, which unfortunately has become much more frequent in the past 6ish years since j originally got the parking permit basically. 

Well, time and time again I receive judgemental looks, or hear people whisper to their friends or even have had people actually approach me for parking in a handicap parking spot when I have a handicap parking permit, just because when they initially look at me, they do not see a disabled individual. It's safe to say that it does get very annoying after awhile but it also hurts me as well because I shouldn't have to defend myself for being disabled and taking advantage of the resources available to me. 

Well, typically when this happens, I really try to just shrug it off and let it go, it's not worth the energy to get upset over the looks or comments people make to one another about me, but it's a different story when you decide to make an example of me and think you're doing the right thing by confronting me about Peking in a handicap parking spot. So when this occurs, and unfortunately it occurs more often than I wish it did, I do defend myself to a point, but there are some people who are just plain rude and mean when it comes to situations like this. 

Here are two separate occasions that I was approached by someone for being parked in handicap parking when I legally could park there, and they both had to different reactions. 

First, I went to a well know fast food place here in Missoula and parked in handicap parking because I had recently dislocated my kneecap so walking even short distances was hard on me, well a man who was sitting with his young son at the front window witnessed me park there and gave me one of the dirtiest looks I had ever been given, but I told myself just let it go, it's not worth it. So, I ordered my food and as I was waiting for my order the man who had watched me park in the handicap parking spot decided to make an example of me in front of his child by approaching me about my parking choice... 

His words were, "um... Excuse me but you're parked in a handicap parking spot." My obvious response to him was, "yes I know I am." He proceeded to tell me how don't look handicapped and how I shouldn't take advantage of something like that when I CLEARLY have no idea what it is like to live with a debilitating physical disability. I was so incredibly caught off guard by this I didn't even know how to respond. So I simply told him, "well, thank you for that speech, but I actually am disabled and have the right to legally park there because I have the permit to." All he had to say to me after that was, "well you don't look disabled!" And just turned right around and went back to eating with his son. I was so distraught by this that as soon as my order was up I tried my best to get out of that building as quick as possible and just got to my car and cried... After that, I told myself that I shouldn't have to defend myself like that ever again, especially to a complete stranger and after they were nothingn but rude and judgemental to me.

Well, needless to say, I have since had more situations like the one I just explained come up over and over again, and I finally came up with the perfect comeback to someone who decides it's their job to point out to me that I don't look disabled,, and I'd love to share that heat, but firt let me explain when I came up with this wonderful comeback! 

Well, this time when I was approached again by a complete stranger about parking in a handicap parking spot, it actually occurred when I was just getting out of a doctors appointment. As I was walking back to my car, I saw a truck slow down near my car as the driver was searching for a parking spot, and the only free ones happened to be in handicap parking, and from what I could see he did not have a handicap parking permit or license, well as I proceeded to my car, the man driving the truck decided he needed to literally park his truck behind me so I couldn't move my vehicle and actually get out of his truck to approach me about parking in a handicap parking spot. Now this man was even worse than the one I described earlier, he not only was rude and mean but he was actually yelling at me through his entire speech and even told me it was pathetic of me to take advantage of what is most likely my grandmother's handicap parking sticker. Once he finally shut up, I told him, "well I'm really sorry that that is how you see me, but I actually am disabled and where I park really shouldn't be any of your concern." Of course, automatically his response was, "well you don't look disabled!" So I said to him, "well you don't look like an idiot, but I guess we are both wrong on our assumptions of each other." I could not believed how stunned he looked, I immediately unlocked my car and got in and he quickly turned around, got into his truck, and sped off... 

I felt empowered for standing up for myself, although I did feel slightly guilty for insulting the man and calling him an idiot, I just was so frustrated with him and his actions toward me that the guilt I was feeling was very minimal. Maybe I should have said something different to him, but I'm not ashamed for doing it and I do not regret it. So I've decided that if anyone again feels the need to be rude and mean and even someone aggressive toward me about not looking disabled or for parking in a handicap parking space when they think I shouldn't, then I plan on saying to them exactly what I said to that man. 

It literally breaks my heart to think that someone can be so quick to judge simply based off of another's looks. Just because I am living with an "Invisbile Disability", doesn't mean that it isn't any less debilitating than what someone else may be living with. It isn't anyone else's job to remind me that I don't look disabled, I already know that. 

My only hope is that people will take out of this the fact that just because someone who may not look disabled in your eyes doesn't mean they aren't disabled, and that people should really think before they approach anyone in this sort of situation, because you honestly aren't making it better, you're just making it worse, more uncomfortable and making those of us living with "Invisible Disabilities" feel like we are just an inconvenience to you and the world around us. 

What do you all think? Do you think I approached the situation in a good manner or to the best of my ability at least, or do you think I should have gone about it in a completely different way??  

Have you experienced any sort of situations like this simply because you don't looks disabled?? 

I'm very curious to hear your thoughts over the matter! 

XOXO, 

Courtney 

Post Surgery...

I'm not really sure how many people actually view this blog, but for me, I want to make it kinda an outlet for myself. Help myself deal with all the lovely curve balls that are continually thrown at me... 

With that, I thought I'd give a little update and maybe ask some questions to get some opinions from anyone out there willing to share! 

Well, since the last time I wrote (which I apologize for it being so long ago, I'm planning on making this a weekly submission so we will see how that all goes I guess), it feels as if so much has happened in my life, and yet as if nothing has really changed at all. 

Since my latest surgery, I'm felt myself become stronger, and I no longer feel that white lightening pain I did throughout my spine, caused from the metal rods placed there for the fusion originally, which is a great feeling and definitely a step in the right direction! But, I do still feel pain, not as much as I expect to feel, but it's more muscular pain than anything else at this point. I've started my physical therapy and am also registered for a dance class. Now, I know what you may be thinking, "why the heck is she in a dance class after just having major back surgery!?" Well, let me explain. 

Basically, if I want to graduate on time, I have to take this class now, because it's only offered during the fall of odd years... But so far I think it is actually going to be very beneficial for me to take this class along with my physical therapy, I can already feel my entire body becoming much stronger than what it was prior to surgery. 

My only concern is for another medical issue or injury to come up; which as you know, is very common for someone living with sticklers. Due to the whole connective tissue disorder and our joints being affected (some people are affected by extremely loose joints than others) it's no surprise when we have a dislocation or if we are just suffering from an achy body... But I really hope that the change in exercise, plus getting healthy again is going to really make life a little easier for me medically, at least that's the plan at least. But I guess we shall see. What happens... I promise to keep you as updated as possible. 

But, I have some questions, I'm just curious if anyone else that is living with this syndrome or if you know someone with it, if you or they deal with anything I've mentioned in my posts or the video I have located on this blog...

Do you wake up in pain, or even wake up in the middle of the night from pain?

Do you feel overly tired even after getting a good night's sleep?

Do you find simple tasks like walking up stairs or even carrying your groceries to be a difficult task? 

I know these are pretty general questions, but it's amazing how much someone can tell you or being to tell their story just through a few questions!! If you're willing to share feel free to comment or, contact me even. My in for should be posted! 

Well that's al for tonight everyone!

XOXO, 

Courtney

Update:

Well.. I know I promised an update awhile ago, but since my initial post a lot has been going on for me medically.

I ended up having bi lateral TMJ jaw surgery around the end of February, and then just a week ago today I ended up having my 3rd back surgery.. To say these last few months have been filled with medical issues would be a bit of an understatement.

I still would very much like to really dive into this blog and see what I can do with it, even if it doesn't become a big deal to the rest of the world it's still a big deal to me. It may have originally started out as a simple homework assignment for a technologies class, but I'd really like to see where I can take it from here.

As you can see, I added a fun little (short) video about myself to help explain what Stickler Syndrome is, and to give you all a fresh look at me, so hopefully it's a full new addition to the blog and you all like it. I want to remake the video though, make it more detailed and longer to better explain my life and what I have lived with so that maybe others living with this disorder won't feel so alone.
As I am currently ink recovery from my most recent spinal surgery, it will be awhile till that happens but be on the lookout for some fun changes to this blog...

Until then...
Xoxo
Court

What is it?

What is Stickler Syndrome?
I'm sure if you're taking the time to read this blog, you must be connected to Stickler Syndrome in some way, shape, or form. Maybe you have been diagnosed with it or maybe a loved one of yours has recently been diagnosed or has been living with this syndrome for many years, and if any of these are the case I'm sure you're looking for answers.  Or, you could end up being like most people I know and have never even heard of this syndrome and now are very interested in further investigating the medical mystery that is "Stickler Syndrome". 

I'm not here to give you all the answers you're looking for, I'm definitely not a medical professional, a professional patient maybe, but that's the furthest my career in the medical field goes. I am just a woman looking to help other understand this syndrome and maybe find my own answers to my questions in the process.

I know that since I've been diagnosed with this syndrome I just have developed more and more questions in the years since my diagnosis; only ever so often do I sometimes find some sort of answers to all my burning questions, but that only happens typically by some strange chance of luck. You'll understand this a whole lot better once I dive into the big details of my life and living with Stickler Syndrome.

So… Lets answer one of those burning questions you probably have, "What is Stickler Syndrome?". 

Well, by medical definition, Stickler Syndrome is referred to as a group of genetic disorders affecting connective tissue, specifically collagen.This syndrome is characterized by distinctive facial abnormalities, ocular problems, hearing loss, and joint problems. 

I have actually come up with my own unique definition for this particular syndrome. I much rather prefer to refer to it as a dramatic inconvenience to life. Actually, I sometimes like to call it both a blessing and a curse but that really depends on the day. But, I'll get to that in another post. :)