RSD and Your Losses
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continued......
byrd45 Mon Jan 05, 2009 8:50 pm
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Recommend Delete Message 21 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:23 PM
Hi Liz,
I feel so bad everytime I hear of what you are going through with your lawyer and worker's comp. I can definitely relate to the stress and hardship that comes with dealing with an idi-t of a lawyer and workers comp who just don't care about the individual.I went through so much bullsh-t with my first lawyer and still cringe at the thought of how terrible he was. He used to scream at me on the phone not return my calls not do what he was supposed to god he was a lazy son of a gun.That is why I finally fired him as I told you a few times now. That is a hard decision and of course is personal too.It worked for me so far though.Worker's comp has withheld treatment so my RSD which was being helped spread instead and went full body while I waited for the slow wheels of justice which finally ruled close to two years later and then I was able to reciev a Lidocaine treatment and several months later Ketamine inpatient treatment. I had to fight in court with them so it would be paid for and luckily they ruled with me. All the doctors even their 2 IME's doctors said I have RSD and the second one said it was work related. They hid the first doctors and the first report from the second doctor from the court until my lawyer and the judge made them materialize it. They didn't wat anyone to see that the first doctor had also said I had RSD and the second doctor said it was work related. Once those reports were admitted that helped alot. It just shows how dirty they are. They had an investigator following me too. They also made me go on job interview even though I could hardly move. If I missed one I could have lost my checks. Finally after that put me in the hospital twice they left me alone.I have been through hell with them too and I feel so bad for everone they put through the same bullsh-t. It isn't right but they only care about their money and that's it. We are just one big dollar sign to them because RSD costs so much to treat.Anyway I hope it all turns out alright for you.
Love,
Robyn
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Recommend Delete Message 22 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:27 PM
Hi Liz,
I hope you are feeling better soon. If you do have to go to the er let us all know how you are doing as soon as you can. I hope you are okay soon. <Big Hugs>
Love,
Robyn
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Recommend Delete Message 23 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/7/2007 9:49 AM
Hi RObyn
This has been a good discussion.I dont even have the energy to go to the er and sit there for a couple hours. Here when you go to the er you have to wait forever. the night i broke my wrist my supervisor took me out there about 12 15 at night and i think it was 3 or 4 when i got home.thats how long i sat with an ice pak on my wrist.i cant remember if it burned or not with the ice but i do know it was hurting so bad.
my wrist is swelling when i use it now. i have small wrists anyhow and i know when its swelling not just from the way it looks but i can feel it tighten up .
i had one dr say i have crps but the wc dr tries to say its arthritis as i broke this wrist before. arthritis doesnt cause all the burning and fire i now experience. i found me another pair of earmuffs yesterday at a yard sale for 50 cents for when it gets cooler out cause my ears burn so bad,mostly the left.
i thought wc paid for your medical.i still think they dont believe none of us when we talk about our symptoms.ive read a lot on the computer about rsd and some lawyers and drs think its some kind of disease that not for real and mostly people with mental problems conjure these symptoms up. yeh,right,i am 100 % positive not one single person here has conjured up any of these symptoms. they are very very real and i wish just one day the people who say these things could walk in our shoes and see how our lives are.yes,it wasnt nice my friend said i shouldnt be reading stuff on the computer as i guess she thinks i come up with this stuff after i read it.but i dont.i am just interested in learning all i can with rsd. i just dont think enough is done for us.here we are all suffering and its like no one really thinks its so bad.
your first lawyer is about like mine i have now. he made me so mad when he said wc caught me carrying in groceries with my bad arm.youre right, i can only lift no more than 5 pounds with that arm,if even that much.i know i cant lift a 4 pound bag of sugar as its too tender and hurts too bad. so i dont even think i can lift 5 pounds.i try to use my arm as much as i can. and they dont see me going on and sitting down for a long time after i go to the store. it wears me completely out and im not even in there 15 min. they might tape us but they dont know what its like for us once we go in and have to rest for awhile because we are hurting so bad from doing not much of anything.
and pauline mentioned the confusion. my mind is getting worse and worse and i get so confused anymore.if i would have to stop and walk away from here for a minute i would come back and be totally lost what i was talking about. i was always so sharp.now i have notes and notes and notes concerning my case and im glad i do cause i have to go back over them.
well,ive rattled enough and my arm is just killing me .not only that i got my migraine back along with chest pains. if i do go to the er i will let you know what they said.
love and gentle hugs
liz
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Recommend Delete Message 24 of 27 in Discussion
From: <NOBR>Northstarmn</NOBR> Sent: 10/8/2007 2:48 AM
I miss being able to cook a meal in a short time period.
I miss wearing socks.
I miss wearing nylons
I miss wearing "nice" shoes
I miss missing my daughter's v-ball games
I miss not being able to climb up stairs
I miss not being able to shop for several hours
I am sorry to be such a disappointment to my husband and daughter
I am sorry that I don't bring income into the home like I did
I am sorry that I don't have strength to get my butt off the floor when I fall
I am sorry I fall
I am sorry my legs are like rubber, and the pain flares up and down
I am sorry my drugs are costing us over 500 a month
I am sorry that my Corba Insurance has turned into disablity insurance, and it's $ 705.00 a month
I am sorry you my husband of almost 20 years works for yourself, and we have no insurance on our daughter nor you
I am sorry that you feel like we shouldn't ask for help from the goverment for health care
I am sorry, that I want to bring our daughter to the Dr., but cannot because we have no insurance for her, and you are hard set in your thoughts
I am sorry, that you bitter with me.... I wish I didn't have RSD, and that life was back to what it was... but it's not
I am sorry my depression makes me cry, and makes me hide in bed...
I am sorry that my family, my brother, who was and still is my biggest supporter now is very ill, and I worry about him.....and you shame me for worring about him.....
Life isn't so wonderful
And I keep reading that there is hope, but I know that RSD has taken up much of my L/E, and now working forward on my upper area.
I am sad that my support at the Mayo Clinic isn't what I thought would be....
I guess I didn't measure up to what they thought I should be... or do....
Keep those who you love close...
Be happy, and work forward......each step is worth it...
paulene (north)
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Recommend Delete Message 3 of 3 in Discussion
From: byrd45 Sent: 10/18/2007 2:47 PM
Recommend Delete Message 25 of 27 in Discussion
From: <NOBR>Northstarmn</NOBR> Sent: 10/8/2007 3:07 AM
Robyn:
Gosh.... thank you for your support, I only saw it after I posted again.....
Like so many, I am hurting, and long nights and days....
I know breathe in....
breathe out.....
RSD robs our physical being, but side effects.....
depression, muscle loss, and just the feelinng of worthless...
it sucks to have this life
and it hurts when others see you physically and believes you are just fine.........
Can I ask a question... do other listen to music to "relax them"
and WHAT do you listen to?
email me suggestions (now I am "OLD) late 40s..
I would appreciate any thoughts....
pmfins@msn.com
paulene (north)
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Recommend Delete Message 26 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/8/2007 8:37 AM
Hi Pauline
This sure is a great site,with great people and RObyn has done well here.If it wasnt for Robyn and all the other great and wonderful people here I wouldnt even make it. Coming here is as good as a psychiatrist and cheaper.It has helped me so much to talk to people who understand.
I am thankful my rsd isnt in my legs,although I do experience lots of burning in my left leg and across the tops of my hips.My feet are tender and I cannot go to malls anymore,but I dont have any moeny so it doesnt matter.I get worn out from going to the store just for maybe 20 minutes.
Im old too Pauline,Im almost 60.So Ive already lived most of my life before I got this.I do get very very depressed and keep wondering why me.I still remember when I first got diagnosed and I looked it up and thought no way did I have something like this,that I would beat it.I went through very aggressive physical therapy for a long time.It was so painful but I did regain more use of my wrist and hand.Now its stiffening up really bad,so Ive lost partial use of my arm.I was told my arm was set wrong.I was told I needed surgery after the fall instead of being set by reduction.So I dont know for sure what is wrong,I just know I have all the symptoms of rsd.It is so painful.I just get so darn worn out and tired from all this pain.
well ive typed too long and i cant type no longer.
love and gentle hugs
liz
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Recommend Delete Message 27 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/10/2007 3:28 PM
Hi Paulene,
You make me laugh ... Your not old girl I'm 43 and I'm not old so neither are you. RSD does make you feel older than you are though I will agree with that. I like alot of stuff from the 60's on up even some 50's. I like Lynyrd Synyrd,The Rolling Stones,The Police,The Talking Heads,Counting Crows,U2,Neil Young,Enrique Iglesias,Nickleback,B-52's,Beatles,The Who,AC/DC,Bob Seger,Sheryl Crow,Gloria Estefan,Ozzie Ozbourne,Greenday,The Eagles,Jimi Hendrix,Grateful Dead, Peter Gabriel,Kansas,Dr. Hook,Bowie,James Taylor,The Temptations,Stevie Wonder,Commodores,Aerosmith,Bon Jovi,Melissa Etheridge....there are alot more but that is all I can think of right now. As you can see my musical taste is pretty varied so there is bound to be some things you will like to. Happy listening!
Love,
Robyn
Recommend Delete Message 21 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:23 PM
Hi Liz,
I feel so bad everytime I hear of what you are going through with your lawyer and worker's comp. I can definitely relate to the stress and hardship that comes with dealing with an idi-t of a lawyer and workers comp who just don't care about the individual.I went through so much bullsh-t with my first lawyer and still cringe at the thought of how terrible he was. He used to scream at me on the phone not return my calls not do what he was supposed to god he was a lazy son of a gun.That is why I finally fired him as I told you a few times now. That is a hard decision and of course is personal too.It worked for me so far though.Worker's comp has withheld treatment so my RSD which was being helped spread instead and went full body while I waited for the slow wheels of justice which finally ruled close to two years later and then I was able to reciev a Lidocaine treatment and several months later Ketamine inpatient treatment. I had to fight in court with them so it would be paid for and luckily they ruled with me. All the doctors even their 2 IME's doctors said I have RSD and the second one said it was work related. They hid the first doctors and the first report from the second doctor from the court until my lawyer and the judge made them materialize it. They didn't wat anyone to see that the first doctor had also said I had RSD and the second doctor said it was work related. Once those reports were admitted that helped alot. It just shows how dirty they are. They had an investigator following me too. They also made me go on job interview even though I could hardly move. If I missed one I could have lost my checks. Finally after that put me in the hospital twice they left me alone.I have been through hell with them too and I feel so bad for everone they put through the same bullsh-t. It isn't right but they only care about their money and that's it. We are just one big dollar sign to them because RSD costs so much to treat.Anyway I hope it all turns out alright for you.
Love,
Robyn
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Recommend Delete Message 22 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:27 PM
Hi Liz,
I hope you are feeling better soon. If you do have to go to the er let us all know how you are doing as soon as you can. I hope you are okay soon. <Big Hugs>
Love,
Robyn
Reply
Recommend Delete Message 23 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/7/2007 9:49 AM
Hi RObyn
This has been a good discussion.I dont even have the energy to go to the er and sit there for a couple hours. Here when you go to the er you have to wait forever. the night i broke my wrist my supervisor took me out there about 12 15 at night and i think it was 3 or 4 when i got home.thats how long i sat with an ice pak on my wrist.i cant remember if it burned or not with the ice but i do know it was hurting so bad.
my wrist is swelling when i use it now. i have small wrists anyhow and i know when its swelling not just from the way it looks but i can feel it tighten up .
i had one dr say i have crps but the wc dr tries to say its arthritis as i broke this wrist before. arthritis doesnt cause all the burning and fire i now experience. i found me another pair of earmuffs yesterday at a yard sale for 50 cents for when it gets cooler out cause my ears burn so bad,mostly the left.
i thought wc paid for your medical.i still think they dont believe none of us when we talk about our symptoms.ive read a lot on the computer about rsd and some lawyers and drs think its some kind of disease that not for real and mostly people with mental problems conjure these symptoms up. yeh,right,i am 100 % positive not one single person here has conjured up any of these symptoms. they are very very real and i wish just one day the people who say these things could walk in our shoes and see how our lives are.yes,it wasnt nice my friend said i shouldnt be reading stuff on the computer as i guess she thinks i come up with this stuff after i read it.but i dont.i am just interested in learning all i can with rsd. i just dont think enough is done for us.here we are all suffering and its like no one really thinks its so bad.
your first lawyer is about like mine i have now. he made me so mad when he said wc caught me carrying in groceries with my bad arm.youre right, i can only lift no more than 5 pounds with that arm,if even that much.i know i cant lift a 4 pound bag of sugar as its too tender and hurts too bad. so i dont even think i can lift 5 pounds.i try to use my arm as much as i can. and they dont see me going on and sitting down for a long time after i go to the store. it wears me completely out and im not even in there 15 min. they might tape us but they dont know what its like for us once we go in and have to rest for awhile because we are hurting so bad from doing not much of anything.
and pauline mentioned the confusion. my mind is getting worse and worse and i get so confused anymore.if i would have to stop and walk away from here for a minute i would come back and be totally lost what i was talking about. i was always so sharp.now i have notes and notes and notes concerning my case and im glad i do cause i have to go back over them.
well,ive rattled enough and my arm is just killing me .not only that i got my migraine back along with chest pains. if i do go to the er i will let you know what they said.
love and gentle hugs
liz
Reply
Recommend Delete Message 24 of 27 in Discussion
From: <NOBR>Northstarmn</NOBR> Sent: 10/8/2007 2:48 AM
I miss being able to cook a meal in a short time period.
I miss wearing socks.
I miss wearing nylons
I miss wearing "nice" shoes
I miss missing my daughter's v-ball games
I miss not being able to climb up stairs
I miss not being able to shop for several hours
I am sorry to be such a disappointment to my husband and daughter
I am sorry that I don't bring income into the home like I did
I am sorry that I don't have strength to get my butt off the floor when I fall
I am sorry I fall
I am sorry my legs are like rubber, and the pain flares up and down
I am sorry my drugs are costing us over 500 a month
I am sorry that my Corba Insurance has turned into disablity insurance, and it's $ 705.00 a month
I am sorry you my husband of almost 20 years works for yourself, and we have no insurance on our daughter nor you
I am sorry that you feel like we shouldn't ask for help from the goverment for health care
I am sorry, that I want to bring our daughter to the Dr., but cannot because we have no insurance for her, and you are hard set in your thoughts
I am sorry, that you bitter with me.... I wish I didn't have RSD, and that life was back to what it was... but it's not
I am sorry my depression makes me cry, and makes me hide in bed...
I am sorry that my family, my brother, who was and still is my biggest supporter now is very ill, and I worry about him.....and you shame me for worring about him.....
Life isn't so wonderful
And I keep reading that there is hope, but I know that RSD has taken up much of my L/E, and now working forward on my upper area.
I am sad that my support at the Mayo Clinic isn't what I thought would be....
I guess I didn't measure up to what they thought I should be... or do....
Keep those who you love close...
Be happy, and work forward......each step is worth it...
paulene (north)
Reply
Recommend Delete Message 3 of 3 in Discussion
From: byrd45 Sent: 10/18/2007 2:47 PM
Recommend Delete Message 25 of 27 in Discussion
From: <NOBR>Northstarmn</NOBR> Sent: 10/8/2007 3:07 AM
Robyn:
Gosh.... thank you for your support, I only saw it after I posted again.....
Like so many, I am hurting, and long nights and days....
I know breathe in....
breathe out.....
RSD robs our physical being, but side effects.....
depression, muscle loss, and just the feelinng of worthless...
it sucks to have this life
and it hurts when others see you physically and believes you are just fine.........
Can I ask a question... do other listen to music to "relax them"
and WHAT do you listen to?
email me suggestions (now I am "OLD) late 40s..
I would appreciate any thoughts....
pmfins@msn.com
paulene (north)
Reply
Recommend Delete Message 26 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/8/2007 8:37 AM
Hi Pauline
This sure is a great site,with great people and RObyn has done well here.If it wasnt for Robyn and all the other great and wonderful people here I wouldnt even make it. Coming here is as good as a psychiatrist and cheaper.It has helped me so much to talk to people who understand.
I am thankful my rsd isnt in my legs,although I do experience lots of burning in my left leg and across the tops of my hips.My feet are tender and I cannot go to malls anymore,but I dont have any moeny so it doesnt matter.I get worn out from going to the store just for maybe 20 minutes.
Im old too Pauline,Im almost 60.So Ive already lived most of my life before I got this.I do get very very depressed and keep wondering why me.I still remember when I first got diagnosed and I looked it up and thought no way did I have something like this,that I would beat it.I went through very aggressive physical therapy for a long time.It was so painful but I did regain more use of my wrist and hand.Now its stiffening up really bad,so Ive lost partial use of my arm.I was told my arm was set wrong.I was told I needed surgery after the fall instead of being set by reduction.So I dont know for sure what is wrong,I just know I have all the symptoms of rsd.It is so painful.I just get so darn worn out and tired from all this pain.
well ive typed too long and i cant type no longer.
love and gentle hugs
liz
Reply
Recommend Delete Message 27 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/10/2007 3:28 PM
Hi Paulene,
You make me laugh ... Your not old girl I'm 43 and I'm not old so neither are you. RSD does make you feel older than you are though I will agree with that. I like alot of stuff from the 60's on up even some 50's. I like Lynyrd Synyrd,The Rolling Stones,The Police,The Talking Heads,Counting Crows,U2,Neil Young,Enrique Iglesias,Nickleback,B-52's,Beatles,The Who,AC/DC,Bob Seger,Sheryl Crow,Gloria Estefan,Ozzie Ozbourne,Greenday,The Eagles,Jimi Hendrix,Grateful Dead, Peter Gabriel,Kansas,Dr. Hook,Bowie,James Taylor,The Temptations,Stevie Wonder,Commodores,Aerosmith,Bon Jovi,Melissa Etheridge....there are alot more but that is all I can think of right now. As you can see my musical taste is pretty varied so there is bound to be some things you will like to. Happy listening!
Love,
Robyn
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RSD and Your Losses
byrd45 Mon Jan 05, 2009 8:49 pm
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Recommend Delete Message 1 of 3 in Discussion
From: byrd45 (Original Message) Sent: 10/18/2007 2:43 PM
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Recommend Delete Message 1 of 27 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 9/20/2007 11:08 PM
Hi Everyone,
We haven't had a weekly discussion for a long long time so here is one for you all!!!!
Sorry it took me so long and I can't guarantee how often you will see these but I will try my best as my health allows it : sound fair to everyone?Let's discuss the following question.........(this is a little personal so only if you feel comfortable okay)What are two things that you feel devastated,angry,or upset to have lost because of RSD?
How are you all doing this week?I'm hanging in there on this end.Been staying busy starting to think about college and hopefully scholarships(keeping fingers and toes crossed on that one!) for Joe I am so happy he has decided he wants to go to college. I think he will really like it alot. It will challenge him where high school and the other grades may not have except for favorite courses of his.I never regretted going myself. I was the same way he was too. I didn't think I wanted to go for quite a few years there. It seemed such a huge thing I guess,things are so different when you are 17 looking into a future not written yet.Anyway, it really makes me so proud of him not that I'm not always proud he's a real good kid I am real lucky there.Also been drawing in short spurts but it makes me so happy.I miss being the artist I have always been.It's like a long lost friend to me.That's what I ended up taking in college art and photography. Alot of you who have known me for a while might already know this about me.To me this is the one of the most devastating parts of having RSD. Giving up my career and life I knew as an artist and working professional.I'm right handed and my RSD originated more in my right hand and arm with less severe
severe RSD in the left hand and arm.That makes it real difficult to draw and hold your camera and lug all that heavy camera equipment around. I used to move all my equipment and carry it by myself before I was hurt I was in pretty good shape physically. Boy did things change overnight I don't have to go into all the details there.Even worse though for me is what RSD has done to me and my family.It has changed my relationship with my husband in many ways. We have had to adapt our lives and luckily I have someone who stands by me at every turn. If he didn't I don't think I could keep going like I do.It has caused emotional problems for all of us and I've had to start treating my depression with medication.We see a family therapist which helps us talk through alot of problems with the family and Matt's care.Matt is a great kid who we love unconditionally but with him being Bipolar and ADHD we are glad to have a therapist involved for when you need that impartial opinion since Matt's behavior can be challenging at times.Both my kids and husband battle depression from dealing with the daily trials of living a life with a loved one with RSD.RSD is so horrible to go through for the person and how horrible it is to watch someone who you love with every bit of your heart in excrucuating pain day in and day out without a breath of relief.That does something to the human spirit you know I'd say on both sides of the fence.Well if you feel comfortable then go ahead and add your thoughts or ideas to this post.
Love,
Robyn
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Recommend Delete Message 13 of 27 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 9/25/2007 5:42 AM
I guess what rsd has taken most away from me is my sense of worth . Not so much now as it was in the beginning . I had always worked and loved my job I was also very active played sports of some sorts year round before rsd, it made me really angry when I couldn't do all the things as before . The kids have all been pretty understanding about it but sometimes I still can see resentment in their eyes when I say I can't do that or I don't feel like doing that
RSD has also taught me allot I can put my energies elsewhere I'm on the board of directors for our local rsd support group here in denver ,active in the denver area bird club and am working with a support group for bi polar kids here in denver.
I've been lucky in the doc area think I have one of the best around I've been with him for the last 15 yrs I also have a great primary care doc who works right along with my pain mgmt doc .
glenda
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Recommend Delete Message 14 of 27 in Discussion
From: <NOBR>Rittlemom1</NOBR> Sent: 9/25/2007 10:52 AM
Liz, years ago I reported my divorce attorney to the bar association , imagine my surprise when I answered my door bell one day and found him standing on the other side of the door. lol He had the papers Ihad been complaing about for over a year and told me that my actions were not necessary. I told him it was obvious that they were as it got me the papers I should have had over a year ago..lol He said to me make sure you let the association this matter has been reloved please. He has since become one of our city council men and has been for years so I giggle to my self often when I see him now as he has changed from the cocky young GQ back then to the gray haired beer belly everyday guy today. I hope his attitude has mellowed with his body!! lol Kathy
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Recommend Delete Message 15 of 27 in Discussion
From: <NOBR>Northstarmn</NOBR> Sent: 10/1/2007 1:46 AM
thank you for this discussion. what do i miss because of my rsd
working
socialization
well health
participating in my daughter's life
having a marriage
cooking - not having to have to "plan out three hours to make dinner"
cleaning
POPPING out of bed
Just doing things, going to pick apples, and then making a pie, and having to have
to rest, or delayit until the next day
The list can go on, and we all know it..
I HATE THE PAPERWORK ..... I don't understand, and I don't do things from SS as they want, as it confuses me... I FORGET.
I hate the depression and feeling like I have failed.
The good thing is... I have thisgroup.
Paulene (north)
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Recommend Delete Message 16 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:38 PM
Hi Paulene,
I could really relate to what you said in your post about the things you missed. Like doing things without having to plan a huge timeslot and just going and doing an activity you want to without having to stop and rest. Also the paperwork and how it confuses you and not being able to remember stuff. The one one sentence that hit me in the gut because I realize I feel that way myself is somehow feeling like you have failed here. Why does it make us feel that way? That really hit home with me and thank you so much for saying that and sharing your feelings.You are so right though the depression definitely goes with that feeling same for me <big hugs>
Love,
Robyn
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Recommend Delete Message 17 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:45 PM
Hi Glenda,
I defintely have similiar feelings about this. My sense of self worth is damaged from RSD and it seems that everyday I am trying to make repairs to it. I see it in my children's eyes as well and occasionally when they get frustrated with me they will say something they don't mean. Like you are always sick and you know what they are right. I am always sick I just hope some day they won't hate me for it. That is a real fear of mine that some day it will become to much for them. We do love each other alot so hopefully that is just my little insecurity at play in my mind. I just wish I could snap my fingers and make it all alright for all of us.
Love,
Robyn
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From: byrd45 Sent: 10/18/2007 2:46 PM
Recommend Delete Message 18 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:53 PM
Hi Eileen,
What you said about being a shell of a human being and feeling guilty about your husband having to take on all the hopusehold duties sounded just like around my house. That is the story here too. Things have changed so much for me that I am not the person I once was and I do miss her as much as everyone else does around here.My husband has to do so much around here to and work full time too. I feel guity alot even though he is wonderful and doesn't blame me for being sick.I guess those are my bumps in the road I still haven't maneuvered yet. It's hard isn't it to have to depend on others when what you really want is to have the energy and wellness to take care of things on your own.
Love,
Robyn
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Recommend Delete Message 19 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:04 PM
Hi Kathy,
I went through that at first when I was knew to RSD a few friends from work had that outlook about me being home and of course I would hear that when I would meet people I didn't know like at parties etc.I felt so upset by it that it would make me want to cry. They didn't understand and probably never would either which I realize now is okay. Not everyone is going to understand what we are going through but as long as we do and our loved ones do that has to be enough. I don't even talk to or know those friends from work now 6 years down the road. The two friends from work that stood by me always understood from the beginning and never said anything hurtful along the way. I went through that too with some so called friends.Well live and learn they say right! I feel sometimes that I have learned almost a lifetime since I was diagnosed .I have been flaring alot lately too. I guess it's the change in the weather?
Love,
Robyn
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Recommend Delete Message 20 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/3/2007 8:18 PM
Robyn
I have been flaring really bad lately myself.Maybe it is the weather.Im not sure.Im sure all this stress doesnt help but lately my wrist is just killing me,so tender and so much pain.I need to go to the er. I can barely type.
love and gentle hugs
lzi
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From: byrd45 (Original Message) Sent: 10/18/2007 2:43 PM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 9/20/2007 11:08 PM
Hi Everyone,
We haven't had a weekly discussion for a long long time so here is one for you all!!!!
Sorry it took me so long and I can't guarantee how often you will see these but I will try my best as my health allows it : sound fair to everyone?Let's discuss the following question.........(this is a little personal so only if you feel comfortable okay)What are two things that you feel devastated,angry,or upset to have lost because of RSD?
How are you all doing this week?I'm hanging in there on this end.Been staying busy starting to think about college and hopefully scholarships(keeping fingers and toes crossed on that one!) for Joe I am so happy he has decided he wants to go to college. I think he will really like it alot. It will challenge him where high school and the other grades may not have except for favorite courses of his.I never regretted going myself. I was the same way he was too. I didn't think I wanted to go for quite a few years there. It seemed such a huge thing I guess,things are so different when you are 17 looking into a future not written yet.Anyway, it really makes me so proud of him not that I'm not always proud he's a real good kid I am real lucky there.Also been drawing in short spurts but it makes me so happy.I miss being the artist I have always been.It's like a long lost friend to me.That's what I ended up taking in college art and photography. Alot of you who have known me for a while might already know this about me.To me this is the one of the most devastating parts of having RSD. Giving up my career and life I knew as an artist and working professional.I'm right handed and my RSD originated more in my right hand and arm with less severe
severe RSD in the left hand and arm.That makes it real difficult to draw and hold your camera and lug all that heavy camera equipment around. I used to move all my equipment and carry it by myself before I was hurt I was in pretty good shape physically. Boy did things change overnight I don't have to go into all the details there.Even worse though for me is what RSD has done to me and my family.It has changed my relationship with my husband in many ways. We have had to adapt our lives and luckily I have someone who stands by me at every turn. If he didn't I don't think I could keep going like I do.It has caused emotional problems for all of us and I've had to start treating my depression with medication.We see a family therapist which helps us talk through alot of problems with the family and Matt's care.Matt is a great kid who we love unconditionally but with him being Bipolar and ADHD we are glad to have a therapist involved for when you need that impartial opinion since Matt's behavior can be challenging at times.Both my kids and husband battle depression from dealing with the daily trials of living a life with a loved one with RSD.RSD is so horrible to go through for the person and how horrible it is to watch someone who you love with every bit of your heart in excrucuating pain day in and day out without a breath of relief.That does something to the human spirit you know I'd say on both sides of the fence.Well if you feel comfortable then go ahead and add your thoughts or ideas to this post.
Love,
Robyn
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Recommend Delete Message 13 of 27 in Discussion
From: <NOBR>glendapullum</NOBR> Sent: 9/25/2007 5:42 AM
I guess what rsd has taken most away from me is my sense of worth . Not so much now as it was in the beginning . I had always worked and loved my job I was also very active played sports of some sorts year round before rsd, it made me really angry when I couldn't do all the things as before . The kids have all been pretty understanding about it but sometimes I still can see resentment in their eyes when I say I can't do that or I don't feel like doing that
RSD has also taught me allot I can put my energies elsewhere I'm on the board of directors for our local rsd support group here in denver ,active in the denver area bird club and am working with a support group for bi polar kids here in denver.
I've been lucky in the doc area think I have one of the best around I've been with him for the last 15 yrs I also have a great primary care doc who works right along with my pain mgmt doc .
glenda
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Recommend Delete Message 14 of 27 in Discussion
From: <NOBR>Rittlemom1</NOBR> Sent: 9/25/2007 10:52 AM
Liz, years ago I reported my divorce attorney to the bar association , imagine my surprise when I answered my door bell one day and found him standing on the other side of the door. lol He had the papers Ihad been complaing about for over a year and told me that my actions were not necessary. I told him it was obvious that they were as it got me the papers I should have had over a year ago..lol He said to me make sure you let the association this matter has been reloved please. He has since become one of our city council men and has been for years so I giggle to my self often when I see him now as he has changed from the cocky young GQ back then to the gray haired beer belly everyday guy today. I hope his attitude has mellowed with his body!! lol Kathy
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From: <NOBR>Northstarmn</NOBR> Sent: 10/1/2007 1:46 AM
thank you for this discussion. what do i miss because of my rsd
working
socialization
well health
participating in my daughter's life
having a marriage
cooking - not having to have to "plan out three hours to make dinner"
cleaning
POPPING out of bed
Just doing things, going to pick apples, and then making a pie, and having to have
to rest, or delayit until the next day
The list can go on, and we all know it..
I HATE THE PAPERWORK ..... I don't understand, and I don't do things from SS as they want, as it confuses me... I FORGET.
I hate the depression and feeling like I have failed.
The good thing is... I have thisgroup.
Paulene (north)
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Recommend Delete Message 16 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:38 PM
Hi Paulene,
I could really relate to what you said in your post about the things you missed. Like doing things without having to plan a huge timeslot and just going and doing an activity you want to without having to stop and rest. Also the paperwork and how it confuses you and not being able to remember stuff. The one one sentence that hit me in the gut because I realize I feel that way myself is somehow feeling like you have failed here. Why does it make us feel that way? That really hit home with me and thank you so much for saying that and sharing your feelings.You are so right though the depression definitely goes with that feeling same for me <big hugs>
Love,
Robyn
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Recommend Delete Message 17 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:45 PM
Hi Glenda,
I defintely have similiar feelings about this. My sense of self worth is damaged from RSD and it seems that everyday I am trying to make repairs to it. I see it in my children's eyes as well and occasionally when they get frustrated with me they will say something they don't mean. Like you are always sick and you know what they are right. I am always sick I just hope some day they won't hate me for it. That is a real fear of mine that some day it will become to much for them. We do love each other alot so hopefully that is just my little insecurity at play in my mind. I just wish I could snap my fingers and make it all alright for all of us.
Love,
Robyn
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From: byrd45 Sent: 10/18/2007 2:46 PM
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From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 7:53 PM
Hi Eileen,
What you said about being a shell of a human being and feeling guilty about your husband having to take on all the hopusehold duties sounded just like around my house. That is the story here too. Things have changed so much for me that I am not the person I once was and I do miss her as much as everyone else does around here.My husband has to do so much around here to and work full time too. I feel guity alot even though he is wonderful and doesn't blame me for being sick.I guess those are my bumps in the road I still haven't maneuvered yet. It's hard isn't it to have to depend on others when what you really want is to have the energy and wellness to take care of things on your own.
Love,
Robyn
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Recommend Delete Message 19 of 27 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 10/3/2007 8:04 PM
Hi Kathy,
I went through that at first when I was knew to RSD a few friends from work had that outlook about me being home and of course I would hear that when I would meet people I didn't know like at parties etc.I felt so upset by it that it would make me want to cry. They didn't understand and probably never would either which I realize now is okay. Not everyone is going to understand what we are going through but as long as we do and our loved ones do that has to be enough. I don't even talk to or know those friends from work now 6 years down the road. The two friends from work that stood by me always understood from the beginning and never said anything hurtful along the way. I went through that too with some so called friends.Well live and learn they say right! I feel sometimes that I have learned almost a lifetime since I was diagnosed .I have been flaring alot lately too. I guess it's the change in the weather?
Love,
Robyn
Reply
Recommend Delete Message 20 of 27 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 10/3/2007 8:18 PM
Robyn
I have been flaring really bad lately myself.Maybe it is the weather.Im not sure.Im sure all this stress doesnt help but lately my wrist is just killing me,so tender and so much pain.I need to go to the er. I can barely type.
love and gentle hugs
lzi
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