Treatment

I finally have a treatment scheduled after about 2 years (yikes!). The doctor wasn't so impressed with me but life happens. I guess I've been so happy with Bobby and learning what an adult relationship is like. I can't say I regret it! I'll be writing once I am through with that!

Back to reality

The love of my life. What can I say... He loves every piece of me. I never thought I would find someone who could love me completely. I look down and see something so grotesque most of the time. He doesn't see it, or so he says. He sees me for me, who I am on the inside. Here we are in Cancun, having the time of our lives. Before him, I would have spent the entire trip looking for ways to cover up my malformation. This trip, I spent only a small amount of time doing so. He has inspired me to love myself and not let this disorder stop me from truly enjoying things such as this. 

But then, as noted above, I came home and had a reality check. My doctors appointment didn't have wonderful news and now I sit here wondering what my future holds. My doctor told me things are getting worse, which I knew would happen. It's different to realize it's happening right now. I tried to explain to my support systems that I'm very worried but I don't know if they can understand the real extent of my worry. They tell me it will be fine, but is that really the case?? Looking for inspiration....

My disorder

This is my disorder. After reading another blog and using the internet to look up other pictures of Klippel, I realized that those dealing with this may feel they are alone because this is no textbook disorder. Everyone's situation is different. Is there anyone out there like me with tips on how to make life easier?? 

My compression stocking has been a life saver!

my inspiration

My dear mother, where would I be without her? Probably feeling sorry for myself all alone somewhere. Although I had much support from my father, brother, and the rest of my family, she was the one who stood beside me through all the trips to the doctor and all the disappointments. She mentioned writing a blog to get the information out to those who are also struggling with what is known as Klippel-Trenaunay Syndrome. I went through lots of doctors who truly had no idea what they were doing, their focus was on the money. My mother busted her butt to find a doctor who knew what was best for me. After years of hard work, she succeeded. Who knew that Fargo, North Dakota would provide me with the best doctor I've been blessed with?? Denver was pointless, Rochester did nothing for me, and Minot was a disaster... but Fargo, just the place I had hoped to end up in, gave me just what I needed at just the right time. Dr. Teigen has worked WITH me, encouraging me to be part of my treatment rather then telling me how it is going to be. He's done so wonderfully that I haven't had to have treatments for about a year and a half. My knee and foot are now to the point that I do need some help. But, I went from treatments every 6 months or more, requiring much down time, to sporadic treatments only requiring 1-2 days of rest.
There is no way I can repay my mother for her hard work. I look forward to writing more. I think this will be a therapeutic process if I am able to find and connect with more people out there who are dealing with this disorder.