The cracked Zebra

Day 25 – Behind The Scenes For many of us the behind the scenes footage would be drastically different from day to day. Even from event to event. I really like being as mobile as possible so I do what I have to to make that happen. Around the house, I will wear my afo’s (or not.) If I don't I will have more leg pain the next day if I walk around too much. If I am having a bad pain day and don't plan to move much I will just not wear them. Once I put them on though that's it for the day. They don't come off again until I know for sure I don't need to leave the house. My feet have a tendency to swell so if I take them off too soon I may not get them back on. I also wear who’s (wrist, hand orthosis) I had never heard this term, and it always makes me think of Whoville…Anywho…I wear these to keep my unstable thumbs in place and to support my wrists which are quite weak. I usually wear these all day every day with the exception of cooking and wa...

Day 22 – Your Advice For Someone Newly Diagnosed Understanding complex conditions such as EDS and HSD can feel overwhelming, especially for the newly diagnosed. For me, it was a mix of being overwhelmed by all the information and a rushing feeling of everything in life finally making sense.  The relief was refreshing and washed over me like a wave of knowledge and power. I had a name for something that ailed me. It wasn't depression or anxiety and it was most definitely not all in my head as I had heard from several doctors. After almost 40 years of unexplained pain and injuries that just made no sense. I finally had answers. Part of me really wanted to go back to all the dismissive doctors and specialists and tell them what was really going on. I wanted to advise them to spend some time learning about this condition since they so easily disregarded all of my concerns. The overwhelming feelings took over later with the realization that while I did in fact ha...

Day 21 – Make a Promise to Yourself A couple years ago I asked my friend if she wanted to go for tea. She replied that she couldnt because she had to paint her nails. A bit taken aback, I reminded her that she could paint her nails anytime reiterating to her that we should definately go out! Yet again she told me no and stuck by her original plans, so I said ok maybe another time. I really didnt understand why painting her nails was so important to her. I tried to let it go but I just couldnt, something just kept nagging at me to ask her what the big deal was. If your anything like me you will understand the overthinking that ensues when your thrown for a loop. I could just not shake why she would refuse a tea date. Did I say something or do something that upset her? Had I been a bad friend? Honestly t was driving me absolutely nuts! I had to know! I just couldnt take it anymore. No matter how hard whatever I had done was going to be hard to hear, I had to go to...

Day 16 – Mental Health Today's blog comes straight from the EDS Society. They really said it best so I don’t want to stray from their message today.....  Enjoy!  Not only is May EDS awareness month it is a month that hosts many awareness days and weeks as well. Today is the start of Mental Health Awareness Week. Chronic illness and emotional and mental health concerns can often occur together, and, can have a negative impact on each other. They need equal consideration to avoid either being misunderstood or undertreated — and EDS and HSD are no different. EDS and HDS can force a person to focus on their body. But their emotional and mental health is just as important as their physical health. It is important to understand the connection. The stress of dealing with any chronic illness creates understandable pressures. Having serious physical symptoms remain unexplained or dismissed as “in your head” can trigger a number of emotions and a low mood. It can...