My back won’t stop seizing and spasming so I’ve resorted to my corset. More metal and support in this thing than my back brace. Unlike my brace this was custom designed & fit for me. Making my lower abdominal mess feel better too. If only I have a neck corset that was as effective. One rib is not happy about this but I’m willing to subluxate a rib for a bit of relief. #ehlersdanlos #boobs

My back won’t stop seizing and spasming so I’ve resorted to my corset. More metal and support in this thing than my back brace. Unlike my brace this was custom designed & fit for me. Making my lower abdominal mess feel better too. If only I have a neck corset that was as effective. One rib is not happy about this but I’m willing to subluxate a rib for a bit of relief. #ehlersdanlos #boobs

bellaregretta

bellaregretta:

I’ve been working on this little tidbit for awhile now. I started writing it because I kept seeing these things on My facebook feed, things that even My FRIENDS in real life were posting. Memes, articles, videos and commentary about “real sex” vs porn sex and then alist of things that to me seem…

Great post Bella! 

ehlersdanloszebra

Anonymous asked:

My neighbor just passed from EDS and he was taken really suddenly. He had just been accepted into the University of Illinois to study biochemical engineering. He was kind and the type of person who went out of his way to make sure everyone felt welcomed and loved. He was that special person you meet one time in your life. Because of him, I'm so thankful for pages like this getting awareness out there. If more awareness happens, maybe less people will die in excruciating pain the way he did.

ehlersdanloszebra answered:

I’m so sorry to hear about your neighbor’s death. :( It’s awful to hear such tragic ends happening to wonderful people. I hope more awareness does help us find the support many people need to cope with this painful disease. One of the goals that I have is that we can help one another.

Good news! I’m walking much better! The new braces I fundraised for are helping the way they’re supposed to. It’s very gradual improvements but still! I am now allowed to go back to mild strengthening exercises & I am allowed to start doing some very mild abdominal & upper body exercises. We’re gonna start trying to help my wobbly neck too! Pretty sore now but I’m happy to know my legs are working better.

Good news! I’m walking much better! The new braces I fundraised for are helping the way they’re supposed to. It’s very gradual improvements but still! I am now allowed to go back to mild strengthening exercises & I am allowed to start doing some very mild abdominal & upper body exercises. We’re gonna start trying to help my wobbly neck too! Pretty sore now but I’m happy to know my legs are working better.