Yesterday I had someone come up to me that noticed I had posted something about EDS and asked what exactly it was and what damage it caused. This is the exact reason I post about EDS. Awareness. I want people to know the name. I want people to know the symptoms. I want people to know the dangers of having this illness. I don't post for attention or sympathy, I post in hopes that people read it. My hope is that some day in the future I will be able to say "I have Ehlers Danlos Syndrome" and I wont get the response "what's that?".

Hand Surgery Update

After spending 1 week in a splint, 6 weeks in a cast, and 3 weeks in a smaller cast I am finally cast free! X rays show that I am not completely fused yet but the hardware does not show any signs of rejection. Still have a lot of pain and swelling and pretty much no function in my thumb but everything surgically looks good. Now its time to be patient and get used to having a fusion.

BEFORE SURGERY 

                                                      AFTER SURGERY

I Am Not Invisible

When people see me they don't know I am sick. They don't see all of my pain and struggles. They see what appears to be a normal healthy 21 year old. When you have an invisible illness you hear things from people like "Well you certainly don't look sick". Although at times I am happy that people cannot tell that I am sick, sometimes it is hard to be doubted and questioned when you do explain to someone that you are sick. To not have your pain, suffering and struggles recognized but questioned is almost unbearable. The feeling of having someone doubt you and tell you that "You can't be that sick if you look completely normal". I shouldn't have to look sick for people to believe me. It makes you feel alone. Not only do I get this from friends, family, co workers and strangers, but I also get it from doctors. Physically I look healthy, doctors see someone that has muliple health issues that don't make sense and an extreme level of pain and they automatically think you are a hypochondriac. I have had multiple doctors tell me that it was all in my head and that I just needed to take an Anti Depressant. I knew my body better than any doctor I saw. I knew there was something wrong, but because physically I appeared normal I was constantly misdiagnosed. I have had medical problems since I was in Kindergarten. I was in and out of the hospital and was just told that I was weird and they didn't know what was wrong with me. I did not get diagnosed until I was 19, after I had already had two shoulder surgeries. I am now 21 years old. I have had 2 shoulder surgeries and have anchors drilled into my bones to keep my shoulder from dislocating. I have had 1 hip surgery where they had to cut into my IT band so that when my hip dislocates the IT band doesn't get caught on the bone. I have had 1 hand surgery where they fused together my bone because my joint collapsed. My illness way be "Invisible" but maybe people aren't paying enough attention. 

How invisible is it really?

I May Not Tell You

Losing Yourself

Having a Chronic Illness or Invisible Illness is a lot harder for people to understand. When you see me you don't see my pain or my struggle. You see my smile not the tears that I am holding back. People say "you don't look sick" or "you are too young to be like this". It makes you feel alone. It makes you feel like a burden to those around you. It makes you feel guilty. Guilty for not being able to do the things you want. You have no control over your body and it is terrifying. The pain doesn't go away. You start off having more good days than bad, and then the good days become less often and you find yourself trying to remember what its like to have good days. What it feels like not to have pain when you walk. Not to be exhausted every moment. You find yourself slipping away from who you used to be. You become the pain. You lose yourself.

Geneticist appointment

For over two years I have been working with my doctor to try and get into a specialist in Seattle. Dr. Ball, who is from Washington and is a geneticist that specializes in EDS came to the University of Utah to work. I got an appointment with him and was "officially" diagnosed with Ehlers Danlos. With EDS there are many different types. I was diagnosed with Classical EDS. Although I already knew my diagnosis, it was different hearing it from a specialist. It made it more real. There was no question that I had EDS and it was like I had to find acceptance in my diagnosis again. He went over all of the possible risks and symptoms with me and was very patient while I explained everything that was going on with my body. If I have learned anything it is that no one knows your body more than you and it is so important to pay attention. After listening to my symptoms he realized I may have more than just the EDS. He thinks there is a very good possibility that I could have MCAS-Mast Cell Activation Syndrome, which can be common in people with EDS. Along with Chiari Malformation and Postural Orthostatic Tachycardia Syndrome. He gave me a few referrals to different specialists and recommended that I get further testing done to make sure I do not have the Vascular EDS. Dr. Ball was amazing. It was such a great experience to speak with someone that knew SO much about EDS.