Carol G update

[Guest guest]

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

[Guest guest]

Carol G.

So sorry to hear that you are having a time of it right now. Darn meds sure put you in a tail spin along with the RP. RP sure puts your body in an uproar that is for sure. I will be sending good thoughts and prayers your way that you can count on.

As for the group hug I am sending a hug your way too! I wish I had this group when I was first diagnosed. I had to deal with a lot of this on my own then. Keep a positive attitude and that will get you through a lot. It did me. My dr. was always telling me I didn't know how to act sick.

He was the greatest and then he retired. Broke my heart because he was the one that gave me my life back and helped me through the really rough times. He knew if I called him it was important. Even on weekends and nights he would call me right back. They sure don't make dr. like they used to that is for sure.

Take care and hang in there. We are all here for you and everyone else!

Lots of love

Glenda

BTW a grandma! Wow I bet you can hardly wait! That is great news in itself! First ones are always special!