I'm joining this conversation way late, but I wanted to let you know that I have lupus nephritis, and I'm near stage 4 in the shut down process...I have had to discontinue salt and drink tons and tons of water.
About Cellcept, I really believe it helped save my life when I was too sick to hold my head up or move out of bed; it seems to be the easiest to tolerate and is quite powerful without the side effects of methyltrexate. I would encourage you to ask your doctor about it....I had pretty high doses and was able to keep it down without the stomach problems of everything else.
I think we ALL serve such a mighty and powerful safety net for one another on this website. Saysusie had a dream bigger than I think she could have ever imagined when she started this. You have hearts and prayers holding you every minute of every day, you are not alone nor will we ever leave you alone. As human beings, our limits are tested with these trials and at times it feels like "I'm too tired in my soul to keep on keeping on", I know I have felt like that. Some days you just want to go to sleep and not wake up with pain.
Preparing for our departure from this life is difficult to think about much less to work out; but having worked in the medical field for over 20 years - and losing two brothers suddenly; I decided that I want to make it as uncomplicated as possible for my loved ones...they all know my preferences and that I want a "celebration of my life" occassion, I hate funerals...they're too sad and it's not my style. I want everyone to bring their memories and stories of our time together and be joyful of the opportunities that we had together. I'm sure this might freak some people out, but when I went to my first "celebration of life" party - it turned my whole thinking inside out and said to myself "what a great idea"...and it was truly an enjoyable day and we all discovered that we had much more in common with one another because of the love we shared that person. Does that make sense?
My prayer for you is that you will have the strength to endure...it need not be graceful; I pray that when you have those "small bursts" of pain free moments that you soak them up like a dry sponge and breathe deep the fresh air of love. You have so much to give to your family, and let them love you through this...we all need an anchor in our lives that makes us stay our course...and you have family and friends that are willing and I'm sure waiting for you to call and I hope you will....and let them be a blessing to you in your time of need. After all, it's what shows us how committed those relationships really are. Love is about giving and I'm sure you've done your share....now let others give to you the help and nurturing you need.
Cry when you need to, sleep when you want to, dream everyday...and remember how precious you are to so many in your life. You have added so much to our by sharing yourself with us. We honor you and hold you in our thoughts and prayers.
God Bless You, Todd.
"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown