Which descriptive words best explain your CMT? Just remember, no profanity! Ben's Rules!
Here are some ideas for 'A'
Annoying?
Aggressive?
Aggravating?
Am I on the right track?
painful
You sure are!
Frustrating
Depressing
I am sure if I really want to I can find words for A-Z!
I thought I would share this with you guys and gals...I did a little test, every time I take Advil for pain, whether it be for CMT or headache of back, I find that it does something to the CMT! I feel stronger, walk better, no weakness, like I can do more than I usually can...and so forth. At first I thought it was just coincidence, but I noticed that when I do take it that is how I feel. Perhaps it is the Ibuprophen it the Advil, not sure. I will definitely ask my neurologist whenever I get an appointment. Any one else noticed this????
Atrocious
For me, I choose "Annealed".
I can say emotional, because people don't take us seriously. They ask rude questions like why are you limping,and walking with a cane.
Hi Carm,
I know, this type of med helps me too, it helps the joint/bone pain of arthritis, and the muscle pain of Fibromyalgia! In fact it helps me more than any other med I've taken for arthritis. Daypro is my best help, however, I was going over the daily limit, and my Rheum made me cut back, he explained that they can damage the liver and kidney! So please be very careful to follow the daily limits guide!
Wishing you well,
SK
Hi Richard,
So good to hear from you! How exceptional you are, I give you a chance to vent and complain, and you give us a way to grow stronger and overcome!
Thanks a thousand for your contribution,
SK
Dear Martha,
You know, there is far too much of this bad behavior going on! We are supposed to be a highly evolved society, but I see much more compassion shown to animals than to humans! I adore animals too, but what happened to compassion and empathy for fellow humans?
I don't like that this is happening! I have nearly gotten thrown out of the grocery store defending a woman with MS using a scooter, and another time for defending a young man with a handicap parking sticker taking grief!
If ever I'm to be locked up, it may be for something like this and believe me, I'll call every newspaper I know about this!
Wishing you well,
SK
Great adjectives everyone, anyone else? John? Jayme? Tami?
Thank you.
You're welcome, always good to hear from you, Martha!
That's the spirit SK! I've got this quixotic dream about bein a CXMT superhero,that shows up and RAISES some awareness...doctors, teachers, peers, spouses, whatever!
SK said:
Dear Martha,
You know, there is far too much of this bad behavior going on! We are supposed to be a highly evolved society, but I see much more compassion shown to animals than to humans! I adore animals too, but what happened to compassion and empathy for fellow humans?
I don't like that this is happening! I have nearly gotten thrown out of the grocery store defending a woman with MS using a scooter, and another time for defending a young man with a handicap parking sticker taking grief!
If ever I'm to be locked up, it may be for something like this and believe me, I'll call every newspaper I know about this!
Wishing you well,
SK
SK said:
Hi Carm,
I know, this type of med helps me too, it helps the joint/bone pain of arthritis, and the muscle pain of Fibromyalgia! In fact it helps me more than any other med I've taken for arthritis. Daypro is my best help, however, I was going over the daily limit, and my Rheum made me cut back, he explained that they can damage the liver and kidney! So please be very careful to follow the daily limits guide!
Wishing you well,
SK
Sorry SK what is Daypro? Is it over the counter medication? How many were you taking in order for your doc to say over the limit? I also found that a good massage therapist does good. I'll tell you why...used to see an amazing one for years (we actually became good friends), at the time I thought it was ok. But now that she has moved far away, haven't really found someone who does what she did, not just any old massage. I searched and tried a few, not the same. Finally, last week I was referred to one by my Spiritual healer, we connected well. Ok, not sure if this is psychological or not, but I felt much stronger, and the soar on my foot that I have had for years, was less painful ! I figured out why this is, she gets the circulation all going due to very little in legs and especially feet. That is what I need, circulation for every nerve and muscle to work a bit more. Now I can't be going every week as it is not cheap...but I know it helps cause I was soooo week when I stopped going to my first therapist.
Forgive me if I have asked this question before everyone...can we build our calve muscles a bit once they are gone. Doctors say no, but other people say yes, its all in what you believe, "law of attraction". I am going to find out from my personal trainer that I used to use, what exercises would do this, and if it is possible! What do you think???? I hate wearing pants all the time, its hard for a woman, won't wear shorts, bathing suits (only if I go away on vacation), only long skirts right to the ankles. This sucks!
Carm
Martha Carrier said:
I can say emotional, because people don't take us seriously. They ask rude questions like why are you limping,and walking with a cane.
Martha, I agree! I don't like this either, when people ask "what's wrong with your leg"? Before I was embarrassed to say, now I just say "I have a rare genetic disease"...
Carm
Thanks Carm. When you say charcot marie tooth disease they look at you as though you made it up.
Carm said:
Martha Carrier said:I can say emotional, because people don't take us seriously. They ask rude questions like why are you limping,and walking with a cane.
Martha, I agree! I don't like this either, when people ask "what's wrong with your leg"? Before I was embarrassed to say, now I just say "I have a rare genetic disease"...
Carm
Here are some suggestions from webmd for your calves.
http://www.drugs.com/pro/daypro.htmlhttp://www.drugs.com/pro/daypro.html
Yes, Daypro is a prescription, but you can go over the limit with the over the counter anit-inflammatory meds, like Tylenol, Motrin, Excedrin. I have the 600mg tabs, an was taking it 3x daily. Was told 1200 was the limit, though some things I have read say 1800.. He told me that was why I was constantly needing my blood work done, to check kidneys and liver. He recommended that if I needed to, to take more morphine instead of Daypro! Now my Rheumatologist is a teaching Univ Professor, who also has his own practice.
Oh sometimes I have 'too much spirit'! My Nan was a character, not even 5' tall, not even 100 pounds, but dynamite comes in small packages! We lost here in her late 80's, she was so horribly crippled from arthritis and Gilliam Barre Syndrome, probably Sjogren's Syndrome, but her spirit was always strong! We still marvel at her, fondly laughing and telling stories! So I guess I 'get it honest'!
Yes, I am constantly teaching as well, most people don't know about Raynaud's or Sjogren's either, and Fibromyalgia has such a horrible stigma to it! I've had a stress test and the Cardiologist looked at me as though I was speaking a foreign language when I went over my info with him, he said 'They're all autoimmune, right?" I nicely shamed him and suggested he visit Wikipedia!
Now you see Richard, YOU look like a superhero, I'm the one you just never suspect!
I am helping to raise awareness of CMT even here on the various sites on Ben's Friends! This small group of exceptional people is doing more that you may realize about raising awareness! You teach me, I teach others!
Carm, my mom is 82, and would never wear capris in her late years, she asked me to take her shopping and finally bought 4 pair, she said she is at the point where she just doesn't care, she wants to be comfortable. Perhaps just go get the shorts, capris, or dresses, and if you want to exercise, this should be the incentive? Or just adopt mom's idea, and suit yourself!