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
Hi Courtney!
ReplyDeleteMy name is Caroline - I am 25 and am not "officially" diagnosed with Stickler's, but have many of they symptoms (cleft palate, retinal detachment, ear tubes as a kid, joint trouble). My hearing is not bad, but not what it should be.
I totally know what you mean about being tired all the time - I feel like no matter how much I exercise or try to get in shape - I am always exhausted! Even just walking up the stairs or something.
What scares me the most is the possibility of passing it to my children! I can't imagine doing that, especially if they could end up with worse symptoms than me.
Feel free to contact me! I just started a blog, but you can also email me at patton_ce@yahoo.com - it is neat to find someone similar to my age with the same situation!
-Caroline
Hi there Caroline!
ReplyDeleteIt's so nice to actually communicate with someone around the same age as me that actually has an understanding of what it is like to live with this syndrome!
In regards to your comment, I would love to communicate with you more over this matter, it would be really nice to hear your story.
Also, I'm sure since you know about Sticklers and are dealing with some of the symptoms, I thought I would just give a little advice. And I apologize if this is stuff you have already heard before :)
Well, I completely understand the fear of potentially passing this syndrome to your children. I had that same fear. I would suggest looking into meeting with a geneticist and seeing if you can have a clinical diagnosis for Sticklers Syndrome. There are genetic testing facilities but from the research I have done I believe there are only two facilities in the world that perform genetic testing for Sticklers and one of them is located in the US but it is a very expensive process.
I went through the clinical diagnosis and found out I have all but one symptom of Sticklers, so they concluded that based off of my symptoms that I could be globally diagnosed with Sticklers... Anyways, my point behind this is that Sticklers is 50% genetic meaning that if you are leaving with this syndrome your children have a 50% chance of developing the syndrome as well.
For myself, I thought long and hard about my situation and based off of other medical issues I am/was dealing with and talking with my doctors it was concluded that it would not be in my best interest to have children, so when I was 18 I got my tubes tied. It was not an easy decision to make by any means, but it turned out to be a blessing in a way because when I was 20 I ended up being diagnosed with precancer for cervical cancer and my only treatment option was to have a hysterectomy so it made dealing with that much easier since I already couldn't have childen. Obviously if you've watched my video on this page, I'm just repeating myself and I'm sorry for that if it's the case! Haha :) but I would love to get in contact with you and discuss this matter a bit more.
I'll shoot you an email soon!
~Courtney