Positive Things About Having CIDP
AnonymousMay 17, 2010 at 4:23 pm
There is an amusing thread about the positive aspects of GBS. So why not start the same thing about this wonderful gift of CIDP. After all ever cloud does have a silver lining even if you really have to dig for it some times.
So there goes:
1. After many year I was finally able to justify getting a riding lawn mower!
2. I can take a nap in the afternoon and not feel guilt
3. I don’t have to feel guilty about not volunteering to help out anytime there is a request for help.
4. My wife has stopped making “Honey do” lists.
Please fee free to add to the list
May 17, 2010 at 5:30 pm
1. I get to blame it on CIDP instead of admitting I am just too old.
2. I get to meet a lot of doctors and a really great bunch of nurses.
AnonymousMay 17, 2010 at 7:10 pm
I simply blame ‘the meds’.
Don’t remember? ‘Meds’.
Can’t do a trip? ‘Meds’.
When I must do some things? And I fall asleep in the middle? ‘Meds’.
Folks, don’t always believe ‘the condition/disease’? But ‘Meds’ they can comprehend.
Thing is, folks tend to think that there are ‘meds’ that can keep one awake, not feel pain and actually function well! Like to know what THEY are on! Sigh.
AnonymousMay 17, 2010 at 7:11 pm
At parties, if anyone needs a Margarita shaken, I’M THEIR MAN!!:D
On a seperate note, I had a thought the other day…someone should force hospitals, insurance companies, etc., to give out their equivalent of “frequent flier miles”! Hell, most people here could go to the moon and back, if they got something for every dollar they’d spent on treatments, drugs, etc.
May 18, 2010 at 8:00 am
Elmo I agree with you 100%. Today I am taking in a cake to share with the staff at the hospital to “celabrate” my 100rth IVIG treatment in the unit.
The hospital should be showering me in gifts for patronizing them, as there are other options in the area.
The staff was also unaware it is Neuropathy week.
AnonymousMay 18, 2010 at 9:40 am
– I get to REALLY stop and smell the flowers. Especially if I happen to fall in the garden.:o
-I am catching up on those Classics I have been meaning to read.
-I GET massages now instead of GIVING them.
-I am less vain about my shoe ware.
-I am less obsessive about a clean house.
_My dog and cat let me use their bed for naps.
– I don’t have to dread doing my taxes anymore!
-No more schedule or dressing for work. PJs are the “in” style now.
-BEST OF ALL…. No more tent camping!!! Only B&Bs now!:D
May 18, 2010 at 2:03 pm
After 8 years of CIDP and monthly IV infusions, here is my positives:
1. Gained a better relationship with my family back home who we see once a month now 🙂
2. Understand health insurance better than most customer service reps and am very proactive in my health care overall.
3. MOST IMPORTANT – changed the course of my professional life from a civil engineer to a homeschooling mom of 4 and couldn’t be happier!
4. Met some AWESOME people on this forum – some have passed but they made lives brighter when they were here!
5. My level of empathy for those with not obvious handicaps has greatly increased as has my patience.
6. It’s true – docs don’t know everything.
7. Miracles happen!
May 19, 2010 at 8:32 am
LOL! Great idea for a thread Jim. It brightened my day.
1. I’m no longer that “last person to leave” a party.
2. When I “accidently” bump into girls I’m not given that suspicious look. (uh, ‘scuse me mam). 😉
3. Little old ladies ask to help ME cross the street.
AnonymousMay 20, 2010 at 6:10 pm
Such as VOTING? Our state has ‘drive thrus’ for those of us who can’t walk well or the like! Before this year? I’d just get ushered to a seat, and go when called. Ahhhh!
Same w/some restaurants. I hate being ‘stared’ at? But I sure wouldn’t want to ‘tip-over’ on them either.
AnonymousMay 21, 2010 at 3:51 am
Thing is, folks tend to think that there are ‘meds’ that can keep one awake, not feel pain and actually function well! Like to know what THEY are on! Sigh.[/QUOTE]
Hey, I know this is kind of a “joke” thread. But there is medication to help keep you awake. It is also for the fatigue of autoimmune diseases. First there was Provigil, however, the cost of that now is very high and it is supposedly not as good as Nuvigil.
Depending on what your present status is Nuvigil may be an option for you. There are also discount cards for 12 months on their website available now.
AnonymousJune 18, 2010 at 2:29 pm
1. I have learned that everyday is a gift and to find at least one reason to smile everyday.
2. My patience with others has grown tremendously, you never know what is going on in another’s life.
3. I have come to realize I have the best man at my side, he is always patient and kind with me. We aren’t even married (yet, engaged) but he has chosen not to leave when I know there are many out there who could not handle the load of caring for another.
3. You learn who your true friends are.
4. I have what I call my “Gimp Pimp Limp” why you ask? Because it seems that more men have started asking for my number since I’ve been sick. My friends think it’s hilarious and you have to find the humor in it wherever you can.
5. I get to take a nap and no one questions me!
I have found many positive things about it, though at times it is hard to find anything positive. Thank you for creating such a fun thread, helps to keep the head up. Put a smile on my face! 🙂
AnonymousJune 19, 2010 at 12:26 am
I had no idea we had such creative & funny people on this forum, kudos to all of the posts & for making me smile tonight…
1. Definitely the handicapped license plates, think hubby loves them as well
2. Handicapped seating at sporting events or when we order tickets for anything! I know hubby really loves this one.
3. Gained a lot of weight, blame it one the steroids (actually I did gain 80# on the steroids, but then lost 50 of it.) Gained it back, blame it on the steroids (in truth I am beginning to think I eat too much for how little I move.)
4. Don’t want to get together with someone, just bring up the constant fatigue that comes with CIDP. Sad to say, I have used this one.
5. Seriously, the best thing about getting CIDP are all the wonderful people I have met on this forum in the past 8 years: whether through email, the phone or in person. I am proud to call all of them friends…
AnonymousJune 19, 2010 at 2:45 pm
I have stopped worrying about money — I have little to worry about.
My Tax refund got higher (all these credits, at least for another year or two)
My daughter and son are getting a free college education, we qualify for great aid, and they are both smart !!
Nobody fusses when I quit working because I get tired.
The nap thing is indeed wonderful
And probably the 2 most positive things about having CIDP:
1: The need for solid, loving family relationships is more important than anything
2: Money and material things are incredibly secondary to family, faith, and peace of mind
AnonymousJune 20, 2010 at 12:03 am
Get pulled over and tell the policeman I will fail any field sobriety test because I have Chronic Demyelinating Inflammatory Polyneuropathy. If the cop still thinks you’ve been drinking after pronouncing that, go ahead and try to walk a straight line.
My brother (who has MS) have our annual heel toe walking contest to see who teeters, totters and falls first. Gotta have some fun.
June 25, 2010 at 2:00 am
From a caretakers perspective
I have a great relationship with my teenage daughter from spending so much time with her in the hospital
We have the best friends anyone could ask for. When i’m in the hospital with our daughter I always know our son is taken care of
When my daughter is with me we handicap it and she’s not embarrassed
My daughter has found her inner strength
My daughter does a great Quasi Moto when her face is acting up
We are going to France for vacation. Thank you Make A Wish
Our family can do anything
AnonymousJune 26, 2010 at 10:24 am
CIDP has taught the quiet introverted mouse (ME) to roar like a lion. I have learned how to be my own advocate. I live in a life care retirement community and I battled for two years with letters and speaking out to get this community to provide a bus with a wheelchair lift for people like me who can live independently (I am wheelchair dependent). THEY STARTED RUNNING A MINI BUS ON JUNE 23rd.
My next battle is a walk through gate that opens up to a shopping center that a joins the retirement community. I can go over to the shopping center in my power wheelchair IF I can get maintenance to fix the gate the way I need it to work.
June 27, 2010 at 11:20 am
Liz I commend you! ” Ask and ye shall receive.” And yes sometimes I am learning that we have to ask more than once, but it often pays off.
Sounds like you live in a very beautiful place in Florida and if you can eaily get to your shopping what a life. I just know it’s going to happen.
AnonymousJuly 7, 2010 at 7:23 pm
What great thread! I am convinced that a positive outlook is important in dealing with this particular ‘opportunity.’ I believe that keeping active is an important part of dealing with CIDP, and it is a lot easier to keep active when you have a positive frame of mind.
Here are my benefits:
– I now have an iron-clad reason to get someone else to cut my grass.
– Kids and teenagers get out of my way when I stagger down the street, carrying a heavy, metal cane.
– I have met a lot of really cute nurses.
– I have a good excuse to avoid any social event I don’t care to attend.
July 7, 2010 at 10:19 pm
CIDP has drawn me closer to God, closer to my wife and kids, and I’ve found a lot of new friends here at the discussion Forum.
Also I’ve been able to help some others who are starting down this path.
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