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RSD UPWORD



Last Updated: 5/14/2009

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State: California

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Monday, March 09, 2009 

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do.
Eleanor Roosevelt
US diplomat & reformer (1884 - 1962)
Wednesday, January 16, 2008 

Current mood:  determined
Category: Blogging
Another big update complete! Have a look!
Wednesday, August 01, 2007 

Current mood:  sad
Bound by RSD am I to a world that doesn't believe.
Alone, I am not, for there are many of us who stand in the shadows and grieve.

The pain consumes us in part or in whole.
We no longer have any control.

If only it took just one to change the fate which has been bestowed upon me.
If only their eyes were open and I could make them see.

But still, we wage a war against an institution that believes me to be unfaithful and untrue.
What will it take to make them believe me, I don't know......do you?
Friday, July 13, 2007 

Category: MySpace

It's a wheelchair, and I'm not a toy!  I heard myself saying this over and over on Monday.  By the end of the day, I and think we all have had enough of me and my wheelchair!

You see, running errands takes a lot of is an out of me now, especially when we need to go to large stores where a lot of walking is necessary.  Because of this, I now have a lightweight wheelchair for these trips.  We thought it would be an answer for me; something that would allow me to have more freedom to go places with my family, but the first time out…. well let me just tell you how it went…

Our first stop was Costco.  Although they have scooters, I thought it would be better for the kids to start practicing as I knew we would need the wheelchair at our next stop.  I asked my oldest daughter, who is 13, to push me around while my mom pushed the grocery cart and walked around with my two other children.  What an experience!  As a passenger of a wheelchair I had no steering wheel or brakes; all the corners are blind and many people don't care to move out of the way or make any accommodation for personal in a wheelchair.  Towards the end of the store, my oldest daughter commented that I needed to learn to trust her, so I bit my lip and she did a good job. I discovered sitting in a wheelchair is painful, especially upon rising to walk, as that is when my body really let me have it!


Here's her take on the whole thing:

Yesterday my Mom had to use a wheelchair that my grandma's friend donated to her for when her legs hurt. She was upset over using something that gave her more freedom! It sort of angered me at first because she was always complaining about being stuck in the house or being not able to do something because it hurt to walk. I wanted to tell her to stop acting like a child that didn't get actually what she wanted. I know she wants to be able to go to work and do other things with her body but we also know that we can't have everything we want.  When it comes to being granted something to give us away to get her around then she should take it. Even though yesterday frustrated me a lot I think it angered me more about how she pitied herself a little more than she should.  I know that she feels sad, weak, and frustrated but sometimes you have to do what you have to do.


Then we were off to super Wal-Mart.  I knew we would have to use my wheelchair here because the scooters are in such bad shape that they are dangerous, wires sticking out and such.  It was my younger daughter's turn, she's 10.  We soon found out that the customers here are much more impatient and rude, then anyone we had encountered at the last store.  I found a real respect for people who have to use a wheelchair all the time!  For example, when the person pushing you doesn't hear you, either you pass what you want to see or your left trapped because the person pushing you left to see something else and you can't move because you're in someone else's way. 


Now by this point, my son, who is 8, was feeling left out because he wants to push mom too.  He finally gets a brief opportunity, but is rapidly stopped by his older sister.  I know its sibling relationships, but if his sisters would give him a chance, he could do anything for the most part at his sisters can.


Of course there are two sides to every story.  Here is what my children had to say:


This is what my younger daughter said:

Although I don't want to hurt my mom, it upset me that she has RSD and had to use a wheelchair.  I was angry at mom because she was being so bossy, when I was pushing her in the wheelchair.  It was hard yesterday with my Mom in a wheelchair, people stared at us.


This is what my son said:

I had to push my mom in a wheelchair and it was really frustrating because she didn't like being in a wheelchair!


When the day finally came to an end, my kids were totally frustrated with me for being so bossy, and frustrated with each other.  Somehow, I felt like I lost all parental authority when I was in a wheelchair.  Also, I felt like I wasn't respected by adults as well, nor could anyone hear me unless I seemed to be speaking louder than normal and this came off as yelling, which is not what I meant at all.  I was in pain, uncomfortable, frustrated, angry at the inconvenience of being in a chair, and no fun to be around.


But every experience seems to have a lesson for me.  What did this experience teach me?  First, I need to accept the chair and stop feeling sorry for myself.  At the time, this really didn't occur to me, but looking back at it I need to let my children have a chance to control the situation and trust them more to do what needs to be done.  If I need to give any direction, telling them once or twice is enough - over and over solves nothing.  I didn't take the time to recognize that they understood my feelings and were trying to do the best that could. Finally, we all need to work together.  A little give and take, a few deep breaths, and more practice, will make it easier on all of us. 

Friday, May 18, 2007 

Throughout the development of our website and this blog, as well as, our children's school projects, we have learned a lot.

We have learned that people who don't know about RSD want to be taught.
We have learned that people who thought they knew about RSD need to be taught.
We have learned that our friends and family want to help but don't know what to do.
We have learned that a few people that know us have a family member who has RSD (this was a shocker!)
We have learned that there are people in the RSD community that will help us to succeed in our endeavor.

Our mom has learned that we are not alone.  There are many, many more families just like us and creating this website/blog will help us reach them.

As of today, our Myspace site has been updated and will continue to be on a regular basis.  Over the weekend we will be updating our website as well.

We hope to meet many more who are affected in some manner by RSD, whether it be the afflicted or caretaker or family member or friend.  We have learned that we all have something to give one another.

Thursday, May 10, 2007 

Please come visit us at mysite.verizon.net/rsdupword/

Meanwhile we're going to get some sleep. 

Tuesday, May 08, 2007 
Our website got corrupted because we tried to use the _ in our name and it locked it up.  Don't know why, but it did!  So, no more sobbing, we are rebuilding it better and it will be up by 5/11/07!  Sooner, hopefully.  Everyone will have a page to express themselves as well as RSDSA has given us permission to describe RSDS via their website.  Exciting Stuff!  Please check mysite.verizon.net/rsdupword/   and let us know what you think in our comments section here.  Spreading the word about RSDS is our goal...for this we need everyone's help.
Monday, April 30, 2007 

Category: Goals, Plans, Hopes

Last night and today have been productive.  We established a website and got it going.  Since the kids are going back to school tomorrow, I don't know how much update will be done.  But I'm hoping for something!  When we get information posted I will note it here also.  And give you the URL.

 

 

Saturday, April 28, 2007 

Current mood:  excited
Category: Goals, Plans, Hopes


RSD_UPWORD: Reflex Sympathetic Dystrophy Understanding Pain with Openness, Research and Determination

Our family is putting togther and designing this website.  Please keep checking back. and let anyone know about us that might be interested.  You should be seeing many changes in the next few weeks!

Sunday, April 22, 2007 

Current mood:  sleepy

This website is currently under construction please check back with us soon.  Thank you.