Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Stylish ID Bracelet

When got my alert bracelet I didn't want to wear the same ugly silver thing all the time. So just purchased the plaque and then I custom make the bracelet part. It can easily be done with items purchased at a craft store. There is some web sites that sell them too http://www.stickyj.com/

Re: Re: To be disabled or not to be-that is the ?

I just read a comment that Jim L. just said in a recent post. About being in line to vote, and when asked to go to the front of the line,because that is what they were alowing people with disabilities to do. He was given the attitude of "What is wrong with you"---That striked a real cord with me, because that is what I struggle with ---being unable to do things because of my condition/disease.....but at the same time "looking fine".
I almost would rather suffer with the pain (and do) than use one of the handi-cap carts at the stores. One time at the post office I stood in a line for over 30 min. just because I was to embaressed to go to the window labeled "for handi-cap/disabled use" Not that I am embarrassed because I have a disability....but because of the looks and the "what is wrong with you" types of attidudes.
I have a permanent Handi-cap parking card that hangs on your rear view mirror, and yes, I do use that (when I can even find a handi-cap spot) But, still see from time to time the looks from people. And can only imagine what they are thinking.
I also hate going to the Dr. and telling them all your aches and pains and them saying "well you look good"--- How am I suppose to look, like I just got hit by a train---because that is how I feel.
The outer shell is perfect but the insides are all a mess.

Re: ID Bracelet

I have never been what I would consider disabled by the MC, just inconvenienced or embarrassed. But I was disabled by West Nile Virus. The pain was so severe I could barely walk and standing in line was out of the question.

Like you mentioned, I looked fine on the outside and people would give me funny looks when I parked in the handicapped spaces even though I had plates ordered by my doctor.

Since my balance was off I picked up a collapsible metal cane and started using it when I went out - not leaning on it but just using it to have a better sense of where I was in space. It's amazing the difference that made in people's attitudes.

If you are truly in pain or have some other disability you should not punish your body because you're worried about what people think. Be confident and use whatever options are available to you to conserve your energy for your family and daily tasks. Standing in line or walking through the grocery store rather than using the scooter may mean you give up doing the laundry or cooking a meal...what's more important?

On the other hand, I think it's wrong to use accommodations and possibly deny someone else the use when you don't need them. For instance if I'm feeling well enough to walk a short distance I'll go for the exercise rather than park in a handicapped space. It's tempting to take advantage of things like that for convenience when you don't need them just because you can.

When I went to do early voting the line was about 500 people long. There was no way I could handle that. The officials told me I could sit by the voting booths if someone else held my place in line but I couldn't just go ahead of someone. I think that's fair. What I did instead was call the election commission and they let a friend pick up a mail-in ballot for me (I had requested to be put on a permanent mail-in status but they hadn't recorded it for some reason.)

Some of my disabled friends have gotten the free business cards on the Internet or print their own with a blurb that explain their condition. If someone challenges you then you can help educate them by giving them a card.

I know this is a soapbox for me, but remember that MC by itself is not considered disabling. You will not be able to qualify for Social Security Disability or get special plates or placards. However many of us have other conditions in addition to the MC or have another myotonic disorder like paramyotonia congenita which does cause significant disability. If you have symptoms more than stiffness and some muscle cramping (which may include some pain but should not be disabling) then keep pushing for further diagnostic workups.

Jan

Re: Re: ID Bracelet

Hi Jan,
So you are pretty consistent with your stance that the MC should not cause much pain. I am just wondering if you have any suggestions for me because I have quite a bit of exhaustion and pain in my legs in the evenings. I have been tested for just about everything. Do you think the pain is not from the MC? Do you think the MC could be causing foot/ankle pain and atrophy in my feet? Could it be secondary to the MC because of damaging my muscles by moving against the tightness?

Re: ID Bracelet

Shannon,

I think it's possible that you may have tendonitis or other connective tissue injuries if you really push against the stiffness, but like Lois said, you should not have any atrophy.

Do you have any foot drop or foot drag symptoms? Have you had a full brain and spinal MRI to check for lesions? According to my neurologist you can have nerve root damage in the spinal cord that won't show up on any scans. That's what caused my severe leg pain - it was like someone had poured concrete into my legs at times, and then other times I felt like a voodoo doll someone was stabbing with pins. It was pretty horrific but I got through it and now only have occasional pain or neuropathy.

If you want to email Lois and myself privately with a list of what tests you've had done maybe we can make a few suggestions. Obviously we aren't doctors and can't practice medicine, but we've seen a lot of injuries and chronic pain syndromes and might be able to point you in the right direction.

Jan

Re: ID Bracelet

Hi Shannon - I'm not going to address the pain issue, because it seems so individual and variable. I do get calf spasms that hurt like heck sometimes, and I definitely have pain that is MC related, but then I also have pain related to an old knee injury, and a work-related issue. And now, I also have some mild arthritis.

But someone with MC shouldn't have muscle atrophying. I can say that, even at my most sedentary, my MC has always caused me to be flexing and tensing and moving, resulting in very toned (and in my case, enormous) muscles. I now know that my intense activity levels in my youth caused me many and frequent micro-tears - but it all seemed to just make me stronger and more muscular. Atrophy sounds counter-intuitive. Even with my hammer toes, bunions, and other foot troubles, my feet are still really "strong".

Jan - What is your input? Lois

Re: ID Bracelet

I actually really like my silver one - I decided if I have to wear something all the time, I would at least have it look like jewelry. So I got the sterling silver triple rope bracelet, (my favorite type of chain), and I wear it with the alert placket in the inner part of my wrist, so it just looks like a bracelet! Lois

Re: ID Bracelet

I just wanted to alert anyone who did get a sterling silver Medic Alert bracelet, since I touted mine so much. On Christmas Eve, as I was preparing some appetizers, the bracelet suddenly fell on the floor.
One of the links which holds the ID emblem had split apart at the point where it loops through the emblem.
I have had it just 1 year, and e-mailed them, and they will repair it free.
But just keep an eye on yours, or if it looks like any of the connections are thin or weak, notify them, and they will repair it, since these need to be reliable! Lois

Re: ID Bracelet

I have the same symptoms as Shannon. I had a muscle biopsy done and they saw atrophy. I also have extreme exhaustion in my legs. I usually have to pull myself up the stairs by using the railing. And I also have the aches in my thigh muscles. Sometimes, in the middle of the night I get charlie-horse cramps in my calf muscles. My weirdest pain is next to my right shoulder blade, where it feels like I have a knife stuck in there.
I am always cold. Even on a hot day, if there is a little breeze, I feel cold. I have to sleep with a hot water bottle.
I am loving this site, since my doctors can't seem to tell me much. You all have made me feel a little more sane, by acknowledging that this is happening to me, even if no one can see it. My sister says I am just being lazy.

Re: ID Bracelet

Sue,

Sorry you're having so much trouble with pain and weakness. A few of the things you mentioned made me wonder if maybe you aren't having some gallbladder issues. Have you ever been checked for that? The pain by the right shoulder blade along with muscle weakness is especially suspicious. You don't have to have obvious gallstones to have the pain and other symptoms.

Jan