Nice to hear your first treatment went well and i hope it's the same for you come friday...you don't want to start giving up, i know there's alot to the disease as so many of us know and especially myself....you need to look at the disease in which it's not going to beat you and pace your daily life when you are able to get about stronger as we all suffer the draining and tied days.
Over the years i've had no endless things happen to me since i was 18 until in my late 20s with my seizures i actually thought i can't keep living my life like this enclosing myself in incase i had one or went into a trance while outside amongst the public, so i carried on and excepted my situation's and when i ws told i had Lupus it did'nt bother me i just wanted to know what i'd got so i could carry on and get the help i needed.
Go Sandie Go! You can do it! As you can tell I’m cheering you on. The hardest part of the chemo for me was the way I thought my family was looking at me. The feeling of “i cant do this any more” or “what did i do to deserve this” are all natural feelings. Make sure you have someone you can talk to that will just listen. I broke down so many times wanting to give up but after a good cry i was ready for a new fight!
I pray every night for each and every lupus sufferer to live a happy and healthy life! My daughter then prays for a cure!
I’ve done about 10 rounds of cytoxan over the last 3 years…it did help me taper my prednisone, but once I stopped the treatment I had to increase my drugs again. My side effects were minimal …some nausea mostly. I work in a restaurant, and for days after treatment the smell of food would send me running to the toilet to throw up. Zofran helped a lot. It’s been about 8 months since my last infusion and my doctor thinks I may be due for another round soon …
It sounds like you've been through abit with the infusion's and i hope your next time your ok...i've just been offered IV trial and i've got to let the doctor know in 2mths...i don't mind as long as no steriods are involved.
Hugs Terri xxx
Pam said:
I've done about 10 rounds of cytoxan over the last 3 years...it did help me taper my prednisone, but once I stopped the treatment I had to increase my drugs again. My side effects were minimal ...some nausea mostly. I work in a restaurant, and for days after treatment the smell of food would send me running to the toilet to throw up. Zofran helped a lot. It's been about 8 months since my last infusion and my doctor thinks I may be due for another round soon ...
"Thank you" for the push and full support where our lovely member Sandie is concened :)
I look at it this way...yes the disease is a pain with it's daily symptoms besides some drugs being just as bad but if we don't fight the lot and carry on, we all mays well throw in the towel together.
Love Terri xxx
ward0818 said:
Go Sandie Go! You can do it! As you can tell I'm cheering you on. The hardest part of the chemo for me was the way I thought my family was looking at me. The feeling of "i cant do this any more" or "what did i do to deserve this" are all natural feelings. Make sure you have someone you can talk to that will just listen. I broke down so many times wanting to give up but after a good cry i was ready for a new fight!
I pray every night for each and every lupus sufferer to live a happy and healthy life! My daughter then prays for a cure!
Terri , I couldn’t have said it better! I actually just got out of the hospital because the rash on my face blistered due to cytoxan treatments. I have learned to shrug my shoulders and roll my eyes and chuckle “why not”!
One thing i always say don’t dwell on what you don’t have. Be thankful for what you do. Someone out there has it much worst than you!
Thank you mate....just like you say, there is people in worser situations regarding health..the disease can cause death according to how bad we have it and how it strikes but i look at issues like this...i could go across the road today and get instantley killed.
Well how you walked out the hospital with a don't care attitude it's the best to carry as i'm like that and it's what we have around us to live for that counts.
Sending my love and hugs to everyone! Cytoxan is a very powerful drug and it used to wipe me out after my infusions. My liver couldn't handle it and I had to stop taking it. I know it works for some patients and I hope it works for you.
My doctor refuses to give up and keeps trying all sorts of "experiments" on me. I've tried Enbrel injections, too. That medicine didn't do anything for me, but at least we tried. There are so many more meds we've tried and we aren't giving up.
It is a lot to deal with and life will never be the same....BUT, you can live life to the fullest if you stay positive and take care of yourself to the best of your ability. Rest when you need to rest, cry when you need to cry, reach out for support and don't be afraid to be scared. We are ALL there together!
It is a lot to deal with and life will never be the same....BUT, you can live life to the fullest if you stay positive and take care of yourself to the best of your ability. Rest when you need to rest, cry when you need to cry, reach out for support and don't be afraid to be scared. We are ALL there together!
Lovely to hear your spirits are high mate but everything you put there covers everything i've stated to members through messages but in passages but you did it all in one throw "Good one mate"
I hope you weekends been as pleasant as possible and thinking of you dearly. xxx