Re: Re: suffering from RP- new

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Newest

Rp can be a real pain that is for sure. The mayo sounds like a good start! I know how it is when you can't do like you used to. You will learn how to get around not being able to do what you used to. You just learn a different way of doing it! )

I will be sending good thoughts and prayers your way!

Lots of love

Glenda

Re: suffering from RP

you are newing diagnosed too? I am really having a hard time with it. It really scares me to death, I used to be so full of life and now I am left wondering how to get a hold of my life. I am in constant pain, I wake up crying almost every night. Thank God for my boyfriend who has tried to make the adjustment easier on me. I just don't know when the med are going to start working. It would be so much easier if someone could tell me why, when, how, and what. I used to be such a go-getter, I mean I took charge of everything. It is really hard for me to adjust to this lifestyle. I am currently not working and it is driving me craaaaaazy. I can't drive andywhere, I just simply can not so the things that I used to do. I am scheduled to go to Mayo may 30, I hope that they can help. Do you know of any books or literature about this disease? Anything that would help me understand. My flares have been ongoing since November, I have had it in both ears, my feet the past few months and now they think it is in my left lung. I am scheduled for a CT needlt biopsy on MOnday. It just doesn't seem to want to let go of me. Any advice? DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU