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Old 04-19-2011, 04:26 AM   #1
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Do I need to carry straws and bibs with me from now on?

Hey Guys,

I have basically been crying non stop for the past couple of days, I have simply had enough, and no longer know how to deal with anything. I know there are people out there a lot worse off than I am, so I may just be whining as usual, but I am just so incredibly tired right now.

My shoulders have been bothering me for quite a while, on a good day my entire upper back and neck (from below my shoulder blades to just below the base of my scull) are just tense, but on a bad day I will have pain in that entire area as well as in my rotator cuffs, and deltoids. The past couple of days have been a couple of those days. I know what caused the sudden aggravation, but it doesn't make it any easier, as my husband inadvertently caused it. Every year we volunteer at an event where people with different disabilities can try out different outdoor activities such as kayaking, jet skiing, sit down water skiing you name it. My husband's job was to help people on and off the jet skis, it was the second year in a row. My husband an the other guys have continuously asked my to try a ride, and even though I am all about speed, I do not trust my core enough to not just collapse an send me flying into the water. In addition to that, I was also afraid of hurting my shoulders by having to hold on. I never said this to anyone as I always assumed that a no i s a no. Well apparently these guys, including my husband, thought my no was based on vanity, and I was more or less bullied onto the jetski on Saturday. (I know I could have refused, but causing a scene would probably not have been a good idea). My core held out, I was only afraid of falling off once, but when we were done my hands were pretty much just stuck in the grip I had used to hold on to the guy's life west.

OK fast forward to a few minutes after the trip. I am back at my "station" (I was in charge of sun safety). A friend of mine brought me a bottle of water, and when I finally managed to get it open, I was unable to lift my arm high enough for me to drink out of it, and instead the water was all over me, the shoulder simply collapsed for lack of a better term. Thankfully no one saw me, but it just knocked me down, do I need to bring straws, bibs, and changes of clothes along from now on when I go somewhere?

I did a lot of thinking before I confronted my husband with what had happened, in some ways it was his fault as he did not respect my no, but he had no malicious intent. I am doing my best to not be angry with him, and I don't think I am, but I am disappointed that he did not stand up for me when I said a no, but instead joined the choir. We have been together for 14 years and you would think that by now he should be able to tell the difference between a no based on vanitiy, or a no based on fear. I guess he is still a little too dense for that. I spoke to my Dr's nurse about something unrelated Yesterday, but also asked her how many otc pain killers I could safely take as the amounts listed on the bottles don't even scratch the surface. She told me to come in tomorrow, I told her that I am pretty sure there is nothing they can do, but she wants to make sure there is no structural damage that can be corrected.

I'll go for now, I know I am probably blowing this way out of proportions, but since my shoulders always hurt in some way or another, this did not have to happen.

Sorry for complaining again

P

 
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Old 04-19-2011, 10:59 AM   #2
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Re: Do I need to carry straws and bibs with me from now on?

Hey P,

So much of your tale sounds like stuff I have lived through. I understand, believe me!

I can relate especially on a few points:

1) My shoulders ache all the time now. It's not MD pain but secondary because of the stress I put on them climbing stairs and getting out of chairs. There's just no muscle around the joints anymore (nor on my knees). The joint takes all the punishment and stress. They throb at night sometimes.

2) I don't need straws yet but I've had to make so many little tools like a handle to open my dishwasher, a lift strap to get my legs in the car, long handled tools to put my clothes on, etc. It seems every month there's a new obstacle. Luckily I'm an engineer at heart (and by trade) and I always visualize some tool that I can make to help me continue with everyday little things.

3) I am one that keeps frustrations bottled up. Once and a while I end up snapping at my wife or kids. Then I feel terrible but I TOTALLY understand that sometimes THEY don't understand how hard, embarrassing or tiring an activity can be. They insist that I go to a party, picnic or out to eat when I may not feel up to it that day.

Hang in there

Mark

 
Old 04-20-2011, 11:14 PM   #3
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Re: Do I need to carry straws and bibs with me from now on?

There's nothing that embarrassing about needing to use straws and bibs, even people who don't have any disability use bibs with their meals, although it's quite uncommon. As for straws, they're a bit embarrassing at first, but no one really comments on it.

 
Old 04-30-2011, 02:27 PM   #4
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Re: Do I need to carry straws and bibs with me from now on?

Sorry you had such a bad day.
As far as straws go, I use them not because I need to, but often my drinks have so much ice that when the liquid gets down a bit the ice comes pouring out all over my outfit and then I am a mess. Straws are usually served with drinks here in southern California. If you decide to use them, I doubt most people would even notice, even in soda cans.

 
Old 05-04-2011, 08:38 AM   #5
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Re: Do I need to carry straws and bibs with me from now on?

Hey there,

Oh yeah I always use the straws provided at restaurants. At this occasion I was at an event in a state park and just trying to drink straight out of a bottle when my shoulder/arm stopped working half way up, and the water was all over me.

P

 
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Old 05-09-2011, 12:00 AM   #6
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Re: Do I need to carry straws and bibs with me from now on?

Hello

Sometimes when I read the postings I'm always a bit taken back of new developments in some ppl's MD that I have already and wasn't aware that it became a problem.

I've been using straws for cans, bottles and glasses for about a year already since I cannot lift my arm to my mouth without lying backwards. I really never thought it was something to getting used to or new.

Sometimes I think I just accept the changes in my body as the next thing to happen without thinking twice about it. I know we are not all alike and reading about the straws I'm thinking that I'm just accepting me going backwards and let it go.

I've always been a positive person but all of a sudden my MD is making me extremely sad, frustrated, and angry and all the other feelings that I'm not used to.

For the past weak my right arm (the only proper working arm) is losing its strength. I'm struggling to even lift my kettle to make coffee

I went to a coffee shop yesterday and couldn't lift my arm high enough to drink it. I've never had a problem with this and drinking out of a coffee cup didnít require me to use a straw but now it's changing.

I know a lot of you are going through these feelings I'm going through now but I don't want to go there. It's not part of me or wasn't part of me and now I have to fight this daemon all over again.

One of my worst fears happened this weekend and that was me falling in the shower. I had to shout out to be helped and my son had to pick me up while I was naked.

He closed his eyes doing this and we didn't even talk about this a few hours later, like it didn't happen.

Why am I feeling like this all of a sudden? I hate this form of "depression" coming over me!

 
Old 05-09-2011, 08:36 AM   #7
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Re: Do I need to carry straws and bibs with me from now on?

Mandy,

I am sorry that your condition has gotten a bit worse. I also hope that you did not hurt yourself even more by falling. I fell in the shower not due to MD, but it was slippery, and that has caused me so many problems. I am glad you had your son to help you, perhaps instead of ignoring what happened, talk about it a bit and come up with a plan incase it happens again (hopefully it doesn't). Perhaps have a robe/towel in the bathroom or somewhere so he can toss it on you? I don't know, everyone's situation is different, but talking about what happened might help ease the worry of your son.

 
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