Why should I have even thought that the new medication relfan would work. Maybe my expectations are to high, I know I will forever have this Disease and the pain associated with it and the sensitivity to touch and certain materials and I will never be in a pair of take me home tonight big boy boots !! It is a mind set I must try and change or at the very least shake it like a polaroid picture. I know there are others out there that have tried so many different treatments and are waiting as I am for a new drug or a CURE. But until then the Doctors should listen when we tell them something is wrong we know our bodies. If you are in pain tell someone. Do not suffer, we shouldn't have to, but, because there are so many junkies it is hard for the Doctors to give us the relief we so badly deserve. I won't stop this Blog till we push the AWARENESS Envelope, Lick it, and Mail it to everyone and anyone. The message must be sent. I can not express how important this is, you might not know someone but maybe someone on your friends list does. I want and need for them to know they are not ALONE. I also want to stress to everyone once again and for always. This Disease is Real !!! I will gladly show you, and on the right touch me feel me days, let you touch my lovely lady lumps.
Try walking up stairs or down or how about a gravel driveway or even snow even with custome made orthotics. Or sometimes the pressure the lumps place on a band of nerves, even while your sitting, can cause immense pain. If you have it in your hands or feet and you say to your Doctor I am having pain and he states well there is no associated pain with this disease, Find yourself another Doctor. I have itching and Burning in my feet both are affected. I to have pain sometimes severe. This disease bithers me when I sleep I have foam i place my feer on so the pressure isn't pushing through to the lumps. Night splints do not work because of the constraints it places on my feet. My left foot my toes are curled and it still gets swollen almost 2 1/2 years later. It affects my daily living as well, its hard to focus and concentrate on the pain meds or even without. The pain gets so bad that I can't think straight. Keep in mind it takes about 20 or so minutes from the time I take the pain med till it kicks in, Somedays I can't even get on a shoes or socks because even the weight of it will make my feet ache. I prop my feet up in my electric lift chair and on my electric scooter, which one day I would like to get my own and chrome it out lol. Maybe install a small sound system. I would be riding in style. Well I figure if I am going to be riding it I might as well have it my way and be comfortable. !!! But for now I must say .. Red Rover I cannot play today I have some lovely lady lumps to tend to.
Good Night for now and Please pass the word on !!! Becky
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