Wednesday, November 4, 2009

But You Don't Look Sick

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I wish I looked as good as I feel. I get alot of...... wowww you look so good! If people only knew what we PHer's have to go through to make ourselfs look good. Most of the time my smiles are fake! Sometimes I hate taking pics, and whoever takes them always makes me smile. And sometimes I feel so terrible that I don't want to smile. My pics come out with a BIG smile on my face, therefore people assume that I feel GREAT! I have not felt GREAT in a very long time. I can say that sometimes I feel ok or maybe even good, but not GREAT! When you have PH there are alot of BAD days for us... more bad then good! We take one day at a time. That is the only way we can do this. PH is a disease that takes everything out of us. We need a cure. Fight for our cause! And don't assume that because we look good we feel good!
Thanks for reading :)




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Cathy

Sunday, November 1, 2009

November is PH Awareness Month

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I cant say I will post everyday. November is PH Awareness Month. And I will write about how it affected my husband, children, grandchildren, brothers, sisters and ME. We need to spread the word out. Many patients are misdiagnosed each day. It is very frustrating when you are told by Dr's that there is nothing wrong with you! You know something is wrong, but they tell you different. And when you are finally told what you have, it feels like if something was just lifted off of you, like a BIG relief. Even though you are told that you have a LIFE threathing disease, you are glad that you finally know what you have!
It has been very hard on me and my family. So much confusion so many tears, to much acceptance, alot of pain. So many downfalls. But... I am glad that I know what I have. I know what I can expect. I know my limits, even though sometimes I am overhelmed. And sometimes, yes I over do it and pay for it the next day... but stubborness is a part of me that well.. will never go away.... Please speard the word about PH and lets hope a cure is found soon!

On another note I started a new PH med on Saturday. Its called Adcirca. I am having the usaual side effects that go with this med, but I am hopeful that it will work for me and help me feel better. I don't ask for alot better just a bit :) The elephant that decided to come visit me and sit its PHat arse on my chest has finally gone back where it belongs, and my SOB is getting better. I am also much better with my stress and my sadness, its getting better, still there but... thnx to my bff JenC. I have a better attitude and I am doing better, I dont know what I would of done without her. Thank-you so much JenC... you are the best friend anyone could ever ask for :) And thnx for not leaving me in my time of need... luv ya

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Cathy