About Me

I was diagnosed with Heritary Hemachromatosis (genetic iron overload disease) in 1998. It's pesky but does not affect my lifestyle. Being diagnosed with Psoriatic Arthritis in 2004 did, however. My psoriasis is almost nonexixtant but the joint issues often cause me to walk like Fred Sanford. I took a popular injectable biologic medication in 2006, fully aware of the risks and darned if I wasn't one of the few that reacted adversely. It did kick my joints into remission but caused other permanent health conditions. And now I am here...legally blind from steroid induced glaucoma. I took Prednisone eye drops to treat the optic nerve inflamation I developed while on the arthritis medication. Around the same time the eye issues started, I began having neurological symptoms. I'm currently being tested for MS. Out of those tests came another diagnosis...a clotting disorder. I am collecting "ologists". Worse thing about loosing significant vision is not being able to drive. That puts a major cramp in my lifestyle. So I am learning to ASK for help. That is not easy for me. I was very independant and self-sufficient. I am learning so much more than how to ask for help though. I am learning what's important I'm learning that I have more control over what happens in my life. I may not be able to control how many medical specialist I need to manage my health but I can control how I react to my circumstances. Financially, it's been very challenging. Ive faced eviction twice this year and been forced to mooch toilet tissue off of friends. I am on food stamps and recieve public assistance. I was denied disability twice and now have an attorney. But I feel stronger than I've ever felt. I did not know what I was capable of until I was tested. Now I know that I'm meant to do so much more with my life than I had anticipated. The time I am living right now is part of my education...part of my life training. I am going to be able to help others who are in similar situations. My 13 year old daughter has Asperger's Syndrome (high functioning autism), OCD and is Bi-polar. Together, we are writing a book together about making the world a more accesible place for people with invisible handicaps. When I first lost vision, I told my daughter that I was beginning to see how it must feel for her to have to live with a disability. She thanked me for trying to relate to her but replied "Mom...you really DON'T know how it feels because when people see your cane, they know what to do for you. They just don't know what to do for me." So we are teaching people what to do. First, the challenged person has to decide what they need so that they can convey those needs to others. My daughter now tells people that conversation is difficult for her and then she says "But this is how you can help me participate. Please speak one at a time and allow me to complete my sentences". It takes a lot of courage to tell others what you need. I have always had a strong desire to write. Now I can do that. I have always wanted to go back to college since I did not finish due to my health problems when I was in college the first time. Now the Commission for the Blind will send me to college. My life did not end when I lost vision. It changed. It took a different turn. And I am going with it! There is so much to me than what I am telling you now but this is a start. I'm happy to find a place where people are celebrating who they are rather than focusing most of their energy on their percieved losses. Every human on the planet has a disability of some sort. We all have to use what we have to the fullest. That's how we change the world.