Friday, February 11, 2011

Half of a surgery? And RARE DISEASE DAY is coming up

Well, I had a D&C and Hysteroscopy today, my ablation was not able to be done, my uterus is enlarged and I have to discuss more at the follow up on the 24th.

Dr. Masters did tell me about it and explain it but I had just woke up from the anesthesia so I don't remember much of what she said and to be honest, lol Chris didn't understand what she said, so I will talk to her in 13 days and figure it out then.

On to Rare Disease Day

On February 28, 2011 We are celebrating a Day I wish we didn't need. Rare Disease day is very important its recognizing those of us who have things wrong that others do not know about, I have 2 potentially 3 very rare diseases. These things affect EVERY bit of my daily life and truly alter how I do things, how I function, and choices I make.

When I say I have Chiari, Intracranial Malformation, or Orthostatic Hypertension, People look at me like I have a 3rd eyeball. They do not know what they are (now people DO know A lot about orthostatic HYPOtension, or low blood pressure upon standing, but mine doesn't drop, it goes WAY up…way way up…needless to say, I guess I just like to be unique.

Today prior to my surgery Dr. Masters walked in and the first thing she says is she talked to Dr. Dobrin today and she was talking about how she wanted the stress test before my surgery with Dr. McIntosh in March…Hello!!! I am the topic of conversation, my doctors know me, yes, but to discuss me in regards to ANOTHER procedure, OH MY Goodness, ya, I love that I am that popular, but it kind of worries me too, because it means that they are looking a lot deeper into my case…

Oh well, it will all be ok.

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