Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Carol G, It's so good to see you post so soon. You have a great attitude. Hopefully you will get good news and it won't be RP. But if it is, please don't believe all the stuff you read about having a short life span. It isn't true. We can all testify to that. lOL So glad that you are part of the family now. When you get time, tell us your story. Have a great time at your Son's. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Carol G, Thanks for all your wonderful input on the throat problem. Mine is a little better today. I'm hoping it is just a bug of some kind, but will keep close watch on it. Thanks to all the others who have given me info on this. The throat thing is all new to me. Don't know what I'd do without all of you to give imput. Hope you all have a wonderful Sunday. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Hi , I'm glad to hear your throat is getting better, or is it still? I so hope you won't have to worry about it, or feel it, much longer. I mailed my check today, I hope you'll get it soon. I'd love to hear the planning of the foundation, and of the correspondence you hope for from the new Dr. I'd also like to think he should be willing to get involved and listen to what we all have to offer in terms of invaluable information from the greatest people.. I hope your throat isn't any worse today, and you're ready to head on to a new week with a smile! Take Care, Carol G. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi Carol, So sorry that you are having such a rough time of it right now. Hopefully the cytoxan will be just the right medication for you....even tho' it is scary to be on it. Congratulations on the your first grandchild! It will amaze you how much the joy and anticipation of that birth will see you through! Grandchildren are truly wonderful in every sense of the word! We have five and each one of them are special and so loved! I will add you to my prayer calendar! Love, squeek --- Carol Giordano wrote: > Hello my dear extended family. First, I need a group > hug... Thanks, that makes me feel better already! > It's 3:15 am, and as usual I can't sleep. > > Now, let me welcome our newest - you are > among the finest group of family members in the > world, we are all here for you. My update will > hopefully answer some of your questions, but don't > think you're going to end up like me or any one of > us. There is not a " typical " with this disease, but > our experiences will help you formulate your best > defense and help you know what will be right for > you. > > I was diagnosed 3 months ago, have been on various > levels of Pred, my highest, now, is 75, over this > past weekend, and will be at 60 for at least 2 weeks > before I pray I can start to taper down, as I am > having all the worst possible side effects. I have > been on Dapsone for over a month. These aren't > working, as I have had a major progression in > disease activity over the past few weeks brought on > by a simple cold that progressed to > bronchitis/pneumonia, then proceeded to start to > play havoc w/ my face, mouth, eyes, inner ears, and > is starting again in my nose and throat, basically > from my chest up. It's got me good this time! > > My Dr. and I agree it's time for a more aggressive > approach to stop this monster while we try to > determine the activity/damage and make sure there's > not something else going on here too. Originally we > had discussed adding Methotrexate, but he said it > would take too long to start to work, and we don't > have that time at all. So we're skipping over the > " 2nd line defense " and going to the front line with > the big guns. > > I started my first dose of Cytoxan pills today. I'm > not going to try to deny this is freaking me out. > The term " chemo " drugs has it's own problem, and the > more miserable I feel the more I can see the > potential problems. I won't complain too much right > now, I know all the possibilities, my blessed Dr. > spent 2 hours with me yesterday talking through it > all, but I need support from people who know this. > My family is shocked that it has come so far so > quickly, and of course they can't know how it feels > or what to do, except cry with me right now, and > they are all males, except my dear Mom, who is being > so strong for me, despite her own failing health. > What's weird about it all, after three months, today > was the first day I realized that when I'm talking > about this, I'm talking about me. I've started > crying at least 10 times today, and of course the > Pred helps that too. I know I'll get through this, > especially with your help, it I may never have side > effects, I'm trying desperately to be positive. I > would like some honest feedback about the Cytoxan, > though, if you have taken it. I need to know. > > It frustrates my Dr. that there has not been more > research and clinical trials on this. We talked > about the foundation, Dr. Buckner' s study, although > he was hoping she would be doing more now for > treatment,rather than cause. and Dr. Trentham. He is > frustrated that he has to educate the other > specialists he has to deal with for me including > radiologists who didn't read my MRI thoroughly, to > my Neurologist who had never heard of RP, and so on. > We NEED to get this out to more medical > professionals and the public. I am not able to be > too active right now, but you'd better believe that > I will be sending those emails when you guys pick > the day for mass mailings to everybody and anybody. > I'm upset enough for all of us, especially for my > unborn first grandchild that I just learned of, who > I don't want to ever have to even worry about this > cRaP! (I'm so excited about the baby - it's the > bright spot in our lives right now!!) > > I will give you more as I learn more, and I hope you > all do the same. I am thinking of each of you with > your situations, we are so few, but we each have our > special lives and each one of you hold a special > place in my heart. I hope you are in control of this > for yourselves, and if you feel like you're not, > don't wait til it gets worse to do something about > it. I'm not waiting and it's still getting the > better of me. My Dr was talking to me over the > weekend from his home, and he got mad at me when I > told him I didn't want to disturb him at home... you > know what he said? " CALL ME " . You deserve a Dr like > this too. If you don't have one find one now! This > disease can act and destroy quickly, I, and I'm > sure some of the others are proof of that. > > Alright, kick me off the soapbox so can get > back on...I love you and I'll be with you in > my heart on Thursday. > I'll try to address each of you over the next > several days, I'd like to catch up with everyone, > and You all be helping me by reading what is going > on as you take care of yourselves and be as happy as > you can possibly be. > > Thanks for listening, Carol G > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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