Feeling better today. My sisters breast biopsy was benigne so that was great news. My other sister is trying to deal with her problems but having a hard time. Trying to be there for her but having a hard time sometimes just dealing with my problems. I just finished my two rounds of IVIG infusions yesterday. My feet are still somewhat numb feeling but the burning in my hands has subsided and I DID not get the horrible headache with the infusions (yet anyway). Trudging along and trying to find some normal in this CIDP life I have been given. Summer is finally here (it was 103 degrees here yesterday!). My spirts always rise with warmer, sunny weather. Maybe I will get 4 weeks between my next IVIG infusions instead of the 3 I got last time. I can hope. Take care all and thanks for the kind words. 😮
Thank you all so very much, i did turn my life over to my higher power in 1986, and believe me i wouldn’t be here today if i hadn’t! went to work today and turned in my letter of resignation, went to PT before that, then stopped and bought a new mattress! i couldn’t stand the thought of one more night of pain. i hope it helps….well tommorrow is the big day and your right, then the wait. on a positive note, my 17yr old grandson came over to help me start cleaning up my garden, i am so furtunate to have such neat grandkids…next weekend we are suppose to take our fishing boat and go to some lake in Miss. with my son and his family and my grandson in the Navy is meeting us. so….
i will get to meet my great-grandaughter, Olivia who is 6mths old for the first time.
yes, i already did report that Dr. and yes, i will (when everything settles down)
write a letter, and more than one will receive a copy. i am sure he denied every word however, i did find a very reputable, knowledgable, and (so far) very kind neurologist. i’m tired now, going to bed…good night all and God Bless!
I have jumped on your suggestions and as I write you, I wouldn’t know I was ill. Of course that can change at any moment!
But, you have all rallied behind me and been a fantastic support to me. If I could thank you each face to face I would…but please know that this forum has revitalized my hope, helped me thru a bad spot and put me on a better plan for my life.
There is not enough gratitude I can express to you all.
You have been the support I needed when I needed it with the perfect words of encouragement and understanding.
Thank you seems like it could never be enough, but for now…it is simple gratitude I have for each of you.
God bless you.
Thanks to all of you who for your prayers and concerns. I have spent most of the past two days on various websites reading about rental disease and dialysis. I have come to the conclusion that I am not going to agree right away to dialysis, because once it begins it is something which must be continued for life. After reading mostly material from the National Kidney Foundation and for John Hopkins Hospital, which is a major kidney research center, I have decided to make radical changes in my diet which I believe will at least delay if not eliminate the need for dialysis. Just like GBS, I believe it is something with which I can life.
I AM FEELING MUCH BETTER TODAY, I CAN FEEL THE BOTTOM OF MY FEET AND LITTLE AND THE TOP, AND PART OF MY LEG, I HAD A RECURRING UTI THIS WEEKEND THAT WAS MAKING ME WEAK THE DOC SAID, I FELT GREAT TODAY I WENT TO SEE MY MOM AND SAT WITH HER FOR ABOUT AND HOUR AND THEN MY IN LAWS ( i must be feeling good);) SORRY I HAVEN’T ANSWERED ANYONE BACK I CAN’T FIGURE THIS WEB SITE OUT YET, MY PRIMARY CARE DOC DID CALL ME FRIDAY NIGHT AND SAID IT WAS CIPD, I SEE MY NEURO DOC ON WEDNESDAY. THANK YOU ALL FOR YOUR SUPPORT. TALK TO YA SOON.
I used to be a 70 hour management consultant; travelling constantly and fixing all the world’s problems each and every week! 😉 I did this for about 8 years with CIDP, until I finally recognised and accepted the wreckage in my body; knew I couldn’t do it anymore and decided to stop.
Now I am home most of the time. I never thought I was a gardener; now I have a back deck covered in lots of different pots full of beautiful succulent plants, each with their own unique colour and surprises. If I can do abit of gardening in a day, trimming, watering, transplanting — wow, it makes me feel like I have accomplished something. Even just enjoying sitting out in the sun with them is nice.
The other thing is “putting my face on”. That is something my Grandmother used to say, I never really understood it until now that I have reached my advanced age !! My GP knows I feel rotten if I turn up with no makeup, he even is concerned if I don’t have lipstick on!! (I don’t even actually wear alot of makeup!) It is all that “if you look good, you feel good” stuff….doesn’t always work…..!
And, echoing the posts of alot of the others, being able to do something for your family. For me, being with my 11 year old boy is really special. Feeling well enough to get up for the early Saturday soccer game. Joining him on the Playstation for a few minutes until it hurts too much, or even just playing catch. Kids resilience is outstanding. Nothing feels better than an “I love you, Mom” 🙂
hi wendy. i’m so glad your friends were able to help your frame of mind a bit. you really find out who your true friends are when a tragety such as gbs hits you and alters your life. i lost a life long friend when she came up from georgia and saw the condition i was in. i haven’t heard from her since. oh well, it’s her loss, not mine.
that’s great that your sisters and mom help you clean. (guys really don’t know the difference between cleaning & picking up). my hubby helps, but it’s not the way i would do it. i’m trying to find a new person to come in and just clean the things i can’t reach or maneuver my body to get to. such as; i got stuck between the toilet and vanity once, trying to clean behind the toilet. wasn’t funny then, but it’s pretty funny now. one of these days, i’ll have to tell you all about shaving my legs. (now i get them waxed) ‘nuf said for now. everyone keeps telling me that i should write a book on living with gbs.
i have a good sense of humor and that’s how i get through the rough times. so when you get down, try to see the positive or funny things in life and try hard to smile. or if that doesn’t work, we’re always here for you to lean on. we’ll hold you up. i promise.
with love and hugs,