My Body's Betrayal......................

I decided that when Maggie nudged me into creating this blog that I wouldn't turn it into a poor me festival. Sticking to those guidelines has been easy, the tendency to cover up my issues and suck it all up has become second nature. My brain has plenty of time to think about how Ehlers-Danlos has effected my life and I don't have many people to talk to about it. So why then, when having so much to say about my special condition, am I afraid to write it down. Maybe sharing my torment could help someone else who is stuck in this syndrome or help another who cares for someone in my same predicament.

Ehlers-Danlos Syndrome. Hmmm...... Type III, Hypermobility type. That's me. Actually, there is a whole lot more to me than this disability. Reminders that EDS isn't my title, character, or societal definition takes serious commitment. Wrapping myself in a day of pain, the piercing pain in my sacrum. Every second is a bucket of pain, pills, and desperation. Telling Forrest that EDS has become my definition of myself, who i am, and where I am or not going. It's strange, the hurt has been so prevalent for so long that I never know what is really hurt, and it takes something crippling, popping, cracking, mis-aligning, searing, or stabbing to get my specific attention. Attention to details, that is more my game. The overall picture hurts undoubtedly and acknowledgment gives the pain power. So powerful that if not suppressed and ignored surely begets my disabilities definition of myself. I am pain, I am Ehlers-Danlos Syndrome Type III with fibromyalgia, scoliosis, and chronic myofascial pain syndrome. There has to me more.

The guy in the picture has extreme skin hyperextensity, I think I have seen him on TV in a freak circus. Yet again giving bad information for the world to misunderstand our situation. At least he is making a living at being EDS inflicted. We could all be so lucky.

Life Update

Things are moving along out here in wine country. Forrest has one more term of Diesel classes and he is an official certified Diesel Mechanic. He has to take some classes to complete the requirements for his AAS degree and will work on them while returning to work soon. I am so proud of him. He really worked hard. Though I wish we had more time together, I can't complain. He does it all so we can have the life we have dream of.

I am currently taking strides in earning my Landscape Design Certificate. It has been a struggle to return to college, but I am doing what I love which helps to lift the burden from my shoulders, mostly. I am working closely with Students with Disabilities, my instructors, and the head of my department. Everyone at Portland Community College wants me to succeed, and has been extremely helpful and understanding. It has been interesting continuing to teach others about Ehlers-Danlos Syndrome, most people look at me and could never tell there was an issue. I don't want to have to be on disability my whole life. I would like to contribute as long as I can and hope that by finishing this program I can handle doing contract work from home. This will allow me to hopefully work at my own pace, take breaks as needed, and leave beautiful gardens as my legacy to the world when I am gone. I would really love to have a small rare plant nursery. That all depends on when we buy a chunk of land to homestead on.

My dad's illness has been hard to deal with. Multiple myeloma is a stupid, stupid cancer. He had blood tests this past week and the chemo and radiation are working. We just hope that he stays in remission when this round is over, as usually but not always, multiple myeloma is not cureable. I have never been so scared for either of my parents. My dad is doing most he can to eat better and get lots of exercise. It is a little rough when he has to take Dex, which is a potent steroid that happens on Fridays. Buzz Buzz. We are going to the coast this Thursday to take photo's of the damage caused to the coast mountain range during the strong wind storms this winter.

My mom has been making really cool silver clay jewelry and playing with her new kiln. The pieces she has made are really cool. I have been trying to make her do more. She really knows how to design nice things and has been collecting things from nature for inspiration. My momma has so many ideas.............................so little time!

Love to all.

IRIS

Forrest N Iris @ Someplace Else?

Someplace Else, huh?? It is actually the name of our local tavern down the road. I get the strangest looks when i tell people I am at Someplace Else.