Progress Is So Slow
AnonymousApril 4, 2011 at 2:51 pm
I was diagnosed with CIPD in July,and with each IVg treatment, I seem to get one muscle group back…yes, one muscle group…last treatment was flexor muscles in my left knee…I am in a wheelchair and have a constant reminder that my life, as I knew it, is gone…never does a day go by when someone does something to remind me (not purposely) that I am a burden and require a lot of attention…my friends love me, and one still cries when she is with me…this is the hardest time I have ever had, and I have not had a peaceful life, by any means…yes, I go for treatment (you name it, I have tried it) and continue PT, psych, etc…but, this is so tiring…I am in constant pain and have been to many pain specialists…sometimes, I wonder why I fight…and the thought of it getting any worse has me as worried as living like this…all of this to say, I do not know how to adjust to being this impaired…big hugs and best of health to all of you, J aka Brooklyn’s Best
AnonymousApril 4, 2011 at 3:09 pm
First, I’m glad you found this site. Not only can we relate to what you’re going through, some of what you read on this site can be a source of comfort as well as encouraging.
I wanted to comment on one item in your post: [B]”sometimes, I wonder why I fight”. [/B] You fight because the alternative is giving up and I don’t think you’re ready for that (yeah, I like reading between the lines). You can and will get better, either through current treatment or other alternative treatments that have helped others regain a better quality of life.
It won’t be an easy road, but hang in there. Celebrate everything you can do for yourself each and every time. We all need someone and try your best not to feel like you’re being a burden. If possible, find support of those who don’t make you feel like you’re a burden.
Take care of yourself and be encouraged,
I wanted to ask, what type of treatments have you tried? IVIG, steroids? Perhaps it’s time to try something new.
AnonymousApril 4, 2011 at 4:24 pm
Thanks so much Tina…no one would ever want to make me feel this way, but they are also so saddened by what has happened to me, that they act as if I am who I was (example: a best friend left me in the driveway of a parking lot in 10 degrees F thinking I could wait there alone…I could not move due to sand and ice and did not get warm for 2 days; another friend who I have given thousands of dollars to when I was well had problems with me borrowing $300 for groceries, and made sure I knew it…it goes on and on)…this can be so trying and I wonder sometimes where I get the determination to keep going (btw, I am an admin on a pro-life suicide prevention forum and deal with ppl not finding their faith everday)…so glad to find a place where ppl understand that when I say I am cold while wearing 2 shirts and having a heating pad on, that I am not exagerating…it is comforting to be here…thanks again, Tina, and all the best to you, J
AnonymousApril 4, 2011 at 11:43 pm
I came down with a very severe case of CIDP at age 48 over 9 years ago; & I am still a year younger than you today. I look back & would have given anything to have had an extra 10 yr. to be healthy, but after awhile one realizes it is a waste of time to look back. Getting CIDP is much like the stages of death that we are all familiar, & eventually acceptance comes.
It took me a long time to accept help from others, & I hated that I was so dependent on everyone. My daughter used to come to visit me at Mayo every Sat. (a long drive for her) & also took one day off each wk. to come & visit me. My mother moved in with us for 9 months to take care of me (she was 78 then,) until my youngest son graduated from college & moved back home. He watched me during the day until hubbie got home from work & then he worked the afternoon shift. BTW my son is in a wheelchair from spina bifida. My point is, they were all there for me, the mother who had once done everything for them was now bedridden & unable to brush her teeth, wipe herself, dress herself, etc. How I hated that 3 years of my life.
I never accepted that I would be like that forever, thank God. I kept trying treatments until I found one that finally arrested my CIDP. It then took 2 yr. for me to get to walking with AFOs & a cane, to retest to get my driver’s license back, to fly again, to get on with my life. I am now used to the pain & fatigue, it is just a small part of who I am. If you want to know more, go back & read some of my old posts. There has to be the right treatment out there for you. You might never be 100% again, but you will get to where you accept your “new morm,” & some day you will not think that CIDP is the worst illness in the world. I live a pretty wonderful life even with all of my residuals, just keep fighting…
AnonymousApril 5, 2011 at 10:30 am
[QUOTE=Brooklyn’s Best]I am in constant pain and have been to many pain specialists…[/QUOTE]
Are you on any pain meds? I take Gabapentin, without it I don’t function.
It doesn’t take all the pain away but does help a lot.
Take care and never give up the fight!
AnonymousApril 5, 2011 at 7:40 pm
diagnosis is glacially slow!
I thot I was lucky to be diagnosed [after 3 neuros and heaps of tests?] in less than 18 months! Only to be chided by the head of the neruo dept in a training hospital [at a later date]..telling me I ‘COULD NOT HAVE CIDP’, and respond to IVIG, because? I..wasn’t in a wheelchair yet! I responded in kind: Ever think that I am NOT in a wheelchair because I got it in time? YOUR TIME WILL COME! Seek and get all those other opinions that ‘feel right’ to you! But,keep in mind I’d been diagnosed by the head of another area neuro dept head!? Who’d gotten it on target!
And don’t forget to not only ASK, but DEMAND Physical Therapy! IF you find the right therapists? You will be surprisingly blessed!. The good guys know how to motivate you in stages that you can handle and aren’t GUNGHO!…I hate those gungho guys! They do NO good for US! Learn how to learn to re-use your body and use it w/o compensating for everything! It can be done? I’ve done it? At least a couple of times over. Also? As any therapist to give you safe exercises to do at home…there are many. Just do them a few at a time? Many times over when not in PT. They can build you up faster than you realise!
We cannot be hares in this race? Only tortioses! To rush is foolishness.
Slow and steady, and know that the options are not acceptable!
Hope and hugs and get to it, using your common sense as to what’s good and not good and make that progress. I have faith that you not only can? But, WILL!
December 1, 2017 at 11:19 pm
Hey guys 3 ivg treatments have done nothing..Besides side effects aftr serious headaches dizziness..Walking no better walking withba cane have had 10 months was diagnosed a lil over 2 months ago..muscle twitches fingees move on own ivg dont stop that either..On top of this lung issues 4 cat scans not normal ild.. may need lung biop.. Anyone gone through both of these at same time.. I have to go for another treamtmet next week if it dont work idk whats next..Its been a rough yr.. but im grtful others have it worse than me..thk god inhave a job and insurance
You must be logged in to reply to this topic.