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Archive for May 27th, 2012

It’s not so much what we say sometimes as how we say it and what we really mean. And, this is more than whether the glass is half full or half empty.

A lady from church called yesterday to tell me she was so happy that I didn’t need surgery and that there was no blockage found during the angiogram. I am so very appreciative that she thought of me but not all of the news was as good as that. I don’t know how things get so messed up. The doctor said they could not operate or treat my AVM in another manner because it was too dangerous. This is not the same thing. The doctor said to leave it alone and wait until it ruptures-not a great thought since it is growing. Don’t get me wrong. I am satisfied with the results that I received but the two ideas are not the same. If something could be done I was willing to take the risk, but I wanted to first make sure there was no aneurysm. Aneurysms usually rupture more frequently than AVMs. I can understand being happy to not have surgery, but it is not often that the doctors will say, “Let us watch it some more.” The interpretation:  I can still walk or at least get around with some help so let’s leave it alone because more than likely I will not walk afterwards. As for a blockage, that wasn’t the case at all. I don’t know where that came from.

I don’t have a tumor but it is almost like having something like that, and not being able to operate to remove it or treat it. It drives one crazy knowing it is there and nothing can be done. As time passes, you know it will not get better but will get worse and will cause you to lose more and more control (paralysis). I used to worry about it but I learned that this is just another part of me. I have to claim ownership because the AVM isn’t going anywhere. We are bonded together for life it seems.

I don’t know if someone is relaying this information to others or if it is the misinterpretation or both. Some people have known that I had something wrong and would say, “I hope you will get over this soon” like it was a cold virus. When people cannot see what is causing the problem, they have a difficult time understanding. I guess that is why I have felt the need to try and explain this in detail on my blog, hoping to bring more understanding. There are not a lot of these things around (AVMs); each one is different; and those of us who have them feel so misunderstood.

I’m not having a pity party and I do not want to dwell on this. But, I want people who have known me for about 30 years to understand what I suffer from. I have never been one to talk about my problems bringing attention to myself, but now that people I have known for so long really do not understand, I feel compelled to speak. I am a pessimist at times. However, I operate in the realm of optimism—that anything is possible. I am slightly happy to not have surgery but if surgery or other treatment could fix me, I was going to embrace it. Life is too short no matter what. Live today and every day as if it were your last. There will come a time when “today” will be our last. Have no regrets!

Happy Gardening and I don’t mean to be morbid-just the opposite!

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