Susan Waddle
Your Replies
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July 5, 2017 at 9:24 am
LWolf:
Had the same issues with the contacts. E-mails did not work, phone number did not work, then I found the person about 3 hours from here, Ft. Myers, Fl left a message, never called back till I called again, short conversation but I person called from Alabama which was only once, BUT he gave me more info than anyone.
Volunteer ? I tried they want you to run, teach other doctors about it, do presentations on your time and dime. Filled out one app. received a call then nothing. Guess they make money on the donations. Check with your hospital and the ALS they may have more info. You are in a major area, there has to be something.
The happy pills, and your situation, I would remove that from this blog, its no ones business about your personal situation AND many times doctors put you on meds just to keep you quiet.
Let me know about the meetup. and Keep in touch! HUGS
July 5, 2017 at 9:17 amMy husbands IVIG was done everyday for 5 days. Did not work, then they did Plasmapharasis for 5 days, that kicked in, but he was in the hospital for over 4 weeks for the transfusions then released, unable to walk or talk to a rehab center for 6 weeks.
You must be talking about after her first initial infusions for upkeep if she needs it, apparently she does. We were told it is once a month, will find out more next week when we see another nuero.
Good Luck! It is a trying experience.
July 4, 2017 at 5:55 pmInteresting that you say you are weak and wobble. Jim still does too.
The meet up groups are the same here too, hiking and such but I have seen painting and beading, AKA craft groups.
This foundation did have a day in the park last November with patients and suppliers. It was ok, but I would not say it was a chatty group. We did run into one of his PT’S that has CIDP and never knew it. That was a surprise.
I know about people thinking some one is a hypochondriac/worrier many are, but with this disease you never know when it will hit again, I keep asking what symptoms are we to look for if it is a relapse? More pain and numbness from one doctor, the other stated more weakness. So what is it? One neighbor we have has ALS and they have a group that meets, see if you can get into that group to socialize, bet they let you in. Just remember, we are all in this together!
July 4, 2017 at 10:42 amLwOLF
I know what you are feeling. My husband is the one that was first GBS then now it it CIPD. He was just in again (hospital) in our area what we KNOW it was a set back, they put him into observation for 36 hours and off he went , HOME.
Isolation feeling? YES for him and I. My fellow co-workers don’t understand nor does anyone else and I am dealing with my own health issues, not anything like yours, I feel last year, broke my knee, still having problems, was doing GREAT, till my check up with ortho, and that doc screwed up everything. Trying and praying to start a new job here but having a problem standing and walking.
It seems like when this happened to him, he got hacked on the computer. 22 former patients of this hospital got hit, bank accounts, investment and more. Not all was recovered.
He too is having more and more problems, we are going to Tampa NEXT Tuesday to our other nuero doc WHO said it is CIDP not GBS. She seems to know what is going on.
Are you getting monthly infusions? This is one thing our local nuero doc stated about.
If this foundation does not provide a site that is private to those WHO HAVE THE DISEASE them I can stand up and form a blog just for us. You have my e-mail, keep in touch. Where are you located?
They offer liasons in or around the area, mine was worthless! I am hearing that this disease is on the rise.
Hang in there, if they do not have you on an HAPPY PILLS (NOT PROZAC), get on one. He was on one that worked miracles at the hospital but it dried his mouth out so he quit it, they tried 2 others and he threw them out. One thing I am going to ask about next week in Tampa. He does need something, he is also on disability but does FORCE himself to work in the yard, but he pays dearly for it. His attitude is “this is not going to get me” but everyday it is something new that pops up and we don’t know if it is a false alarm or the disease. No TRAINING AT ALL!
Hugs to you, sorry doing this without my glasses….not a good thing! LOL
June 18, 2017 at 4:43 pmSandra:
It is hard to find a person or persons who really know what you are experiencing. The GCB/CIPD was great for me when my husband was first diagnosed with GBS and now we find out it is CIDP and that was only because we went to University of S. Florida in Tampa as we live in Ft. Myers. It was a awful 62 day hospital stay then 6 weeks of rehab, he has progressed about 89%. But there are days that I wonder to if this is a relapse, like this morning, pain, the pillow feet, more back pain than normal, but to go to our local hospital would be a joke, I would rather take him to our VET. I too and still trying to find out what to look for. Everyday he has stomach aches, migraines and more and I feel that he is getting worse, but our appt. in Tampa is not till July 11th,. Yes we have a local nuero, but they have no clue, they want us to come in to see them every time we go to Tampa to find out what the experts say! I should give them the bill!!!!!!!!!!!!!! You can always e-mail me at sjwaddle@comcast.net if you just wish to chat. One thing I have found, this organization put me in touch with a person in Sarasota, WHO only called me back once! So much for the support. I have signed up for a patient liason yet I have not heard back from this women. BE STRONG AND FIGHT! You have it in you, deep down inside. This has put my life on hold and ruined many aspects of our life.
