Posted 6/7/2010 11:51 PM (GMT 0)
Springsjean, I am so sorry you're having such a rough time...my heart goes out to you. Just hang in there and trust that it will all somehow work out as long as you don't give up trying. I know how hard it is and how frustrating it is at times to hear others say that when we are feeling so down and hopeless. I also go through long periods of non-stop crying (and sometimes unbelievable rage but that's another story...lol). I too was always a very strong person but this darn disease can certainly beat us down, both physicially and emotionally, but that doesn't mean it will break us or that we can't beat it.
I did almost a year of iv's and am still mostly bedbound/couchbound and know how hopeless it feels at times. I'm not on the forum as much as I used to be but I can say without a doubt the people and information on here have saved me. I learned from others sharing their stories that there are others ways of beating this darn disease and even though this is a very misunderstood, lonely disease we are not alone. A few weeks ago I was so hopeless I was about to just give up but then I came across one of Gary's posts and was given renewed hope to keep trying.
I know how it feels to put so much hope into a specific treatment protocol, especially one that seems to make the most sense and our doctors recommend, but that doesn't mean another protocol or approach will not work just as well, if not better. Everything to do with LD is trial and error.
You might want to ask your doctor to submit a letter of medical necessity or an appeal just to give it your best shot. If that doesn't work, move on and hope for the best....keep in mind that there are other protocols that can work.
Hang in there and know that at least there is one place...this forum...where you can come and people will understand.
I hope you feel better.