Snap, Crackle, and Pop... My Joints

Hey Zebras and my wonderful family and friends!
I posted this picture on my Facebook after it made me laugh pretty hard. In case anyone doesn't get it, I wanted to explain a little. Part of this painful syndrome is dislocations and subluxations. To dislocate something, it has to completely be popped out of place. I have had my left knee completely dislocate twice in my life and have had my elbow and shoulder dislocate. A subluxation is when something gives out or feels like it's going to dislocate, but doesn't. Both are really scary. I have had subluxations numerous times in my life. It's pretty frequent and very frustrating.
Another thing quite common is joints popping and cracking. Alot of times, for me, if I don't crack or pop a joint, I continue to have pain and sometimes it increases. Popping and cracking joints helps with pain. It also helps because joints slip out of place so much. 

When Pain is Stronger than Pain Medications

This had to be the worst part of EDS Hypermobility Type. Of course everything is hard with EDS Hypermobility Type, but this is so hard. I woke up this morning with alot of pain all over. On mornings like roots morning, I'd much rather stay in bed, in hopes of avoiding extra pain. However, this Sunday morning, I needed to get my butt to church to praise God for giving me life and helping me through EDS. I still have pain, even though I took all the pain medication I'm allowed to. The strongest thing I have (tramodol) made a small dent in my pain level, but because it wasn't the first thing I took to ease pain, I now have pain, can't sit still and feel a little out of it and loopy.  My brain feels super distracted and totally not normal. I wish pain medication was always stronger than pain.  Unfortunately, as those of us with chronic pain know very well, it doesn't seem to work that way very often.

Life Changing Diagnosis

Yesterday, I received the life changing diagnosis that will impact my life greatly.  I'm actually excited to have this diagnosis because now, the search for an answer to the big picture is complete. Now, I don't have to wonder what's wrong, now I wonder,  what is the best way to treat it.
So, are you ready? The official diagnosis, by a geneticist at University of Michigan, is I have Ehlers-Danlos Syndrome Hypermobility Type. The good thing about this type is is not going to alter my life span, like some of the other types do. A really good link to understand more about Ehlers-Danlos Syndrome Hypermobility Type is EDNF.org. it's really important to understand that each type of EDS has different genetic makeup and, with a diagnosis of one, I don't have to worry about it progressing to a different type. It can get worse, the pain, dislocations, and subluxations can get worse and more frequent though. It's not the best diagnosis to have. There are alot of struggles and pain ahead of me, but with my family, friends, and most importantly, God with me, there is nothing I can't get through. I love you all! Please email me at carley.cook1@gmail.com or contact me through whatever avenue you can if you have questions or comments. Keep in mind though, I'm learning too!
I love you guys!
Gentle hugs!


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Such a Pain!

Pain can go away and never come back, and I would be perfectly fine with that.  Pain is super annoying.  I think everyone understands some level of pain.  Pain comes in all kinds and all levels.  I know i have felt minor pain and massive pain, neither of which are fun or cool.  Unfortunately, with Hypermobility Syndrome and very likely EDS 3, pain is more common than not.  It is a constant struggle that typically never goes away.  Even when it feels like there isn't pain, it's usually it's because that noticeable pain isn't present, but the small nagging pain still is.
I think the hardest part of Hypermobility Syndrome and EDS-3 is that it is a hidden and invisible disorder.  I may look healthy and happy but really I may be feeling a massive amount of pain and be struggling to even walk without hurting.  For most of my life, I have kept my pain kind of hidden from most people.  I didn't want to be the annoying one that always complained about being in pain or struggling.  I would act like everything was great and try to suppress the pain and frustration.  Now that I feel like I have validation and understand that there is a reason for how I feel, I feel much more comfortable talking about it.  Even with feeling more comfortable talking about it, I still try not to only talk about pain.  Basically, if you see me and I look healthy and like I'm feeling really great, I'm probably not.  My knee may have just given out for the thousandth time, or my hips might be rotated out again and so my left leg is shorter than my right.  What you see on the outside could very easily be a perfectly crafted mask to make you think I'm doing great.

Being Amazing

Even though I'm almost always in a lot of pain globally, I always try really hard to "be amazing".  I try really hard to be positive and happy, even though I have every right to be negative.  What is the point of being negative and bringing down everyone around you when you can make people smile.
For as long as I can remember, I have had massive amounts of pain, mainly in my joints.  I have always had incredibly soft skin, joints that dislocate, joints that like to give out, and dry eyes to the extent that I couldn't wear makeup longer that a few hours without it really bothering me. Since I was really young, I have been able to do weird things with my joints, especially my fingers and arms/shoulders.  I also crack/pop all over.  I can crack my fingers, wrists, elbows, shoulders, neck, entire back, hips, knees, ankles, and toes.  I have to admit, the pain sucks, but it is what it is and I don't like to be a negative nelly.
Just trying to stay happy and positive.

Sending gentle hugs!