Reflex Sympathetic Dystrophy (RSD)

[Copper]

I live with my twin sister.She has had to take on several of the activities that I can no longer do.I number one cannot stand somone HAVING to help me,I prefer to do things on my own and number two....I know it is starting to take a toll on both of us.I feel like a burden.I feel useless and that makes me feel helpless to a certain extent.I can no longer drive right now so she has to do all the errands like grocery shopping,constantly picking up my prescriptions(I take way too many for someone who is only 29 years old).I have a hard time cooking due to the fact that I cannot stand for long periods of time which is about 10 minutes.When I do actually have the energy to cook I pull up a chair to the counter and cut all my vegatables that way and do what I can from the chair.When I am finished I am exhausted.For something I used to do all the time I feel like someone should cheer for me becasue I actually accomplished something that has now become very difficult for me.It is hard for me to carry anything around because I need help walking upstairs by holding on to the railings therfore cannot carry much.I feel like dead weight.I feel like I have become a burden to be around as opposed to being a welcoming friend and a helper like before.I have always gone out of my way to help people.I'm haing a hard time letting go of the fact that I cannot do this well anymore.I don't like accepting that I need help now,not just help but I need somoen to do it not just helping me do it.I hate this feeling.I hate being this way.Need some words to cheer me up and help cope with who I have become.I don't want to accept who I have become.

[G0J0G0]

Hi Cooper,
I read your entry with much interest, have much of the same feelings, and can relate in a lot of ways. I guess the biggest difference is I don't live with my sister but my best friend of thrity years the last two of which have been pretty much your story. My wife says that she loves me in sickness and in health (I don't doubt her a bit) and she wouldn't have it any other way. I know it is a lot to live with and RSD takes much more than it gives, but there are opportunities to be productive. You have to learn to accomplish the things that are in the realm of your abilities. My wife tells me frequently that it appears that when I am relegated to the bed it as if I am sitting and wollering in my pity (with loving care with no malice intended), but I know that when the pain starts that there is no going back 'till it subsides. I take comfort that there are and will be days that I am able to get up and get around. I was working two jobs and cutting yards in the summer months and now at times it is all I can do to cut my small garden home size yard and then I cut the front one day and the back the next. I now have so many limitations that is laughable, take today I have been in a flare^ that has had me in the bed ALL DAY from waking up till this evening when the night closes. I know that things are hard and there are hardly any words that will soothe the feelings of inadequacy but tomorrow IS another day and you WILL be able to get to moving around a bit more. The key to conquering RSD is to keep moving and make every effort to get the muscles moving, this will help to get the endorphins to flowing that will help with the pain mgmt. Cooper if I could say one thing to you, I guess I would encourage you to keep your prayers flowing and do everything you can do to get the activity back into your everyday life and don't give this horrific monster any more territory than you have to.
Be blessed in all of your endeavors this evening and the days to come. May all of your days be pain free and you find answers to your prayers and your sleep this evening be sweet. Have a great day, G0J0G0.

[Copper]

HI GOJOGO,
I appreciate your words of kindness and encouragement.They did make me feel better.Yesterday was a bad day for me.The pain was intense and I am still not sleeping weel so my patience level drops.Obviously.The name is Copper by the way.I noticed your replying to Cooper.No big deal.This raod I have ahead of me is quite bumpy but like they always say God did not give me anythign I couldn't handle.I have recently started going back to churcha and that has helped dramatically.I never stopped believing in God I just didn't go to church and worship him.I had a falling out with myself in April.I overdosed on a bottle of pills and almost didn't make it.I was hospitalized for a month,spent time in ICU and racked out quite the hospital bill.Stupid I know.But when you hit rock bottem the only way to go next is up adn I have.I have fought depression for a while now.I do finally feel good again.I get out of bed every day and go to work.I keep my mind busy.I scared my family.Trust me I will never be so stupid.I try to look at each day as it's own adventure.I do not look ahead and worry anymore and I do not look behind me at all the pain I have suffered in the past.I try to focu on the present and the present only.I have to remind myself that often but that's ok.My mother is visting this week so this has helped.She's picking up a cane for me to help me walk.It helps talking here.To finally feel like your not alone.I broke up with my fiance in May so things have been turbulent.He went back home.He moved out with me when my work transferred and it just didn't work out.I am female and 29.I'm not looking for anyone right now-need to focus on me for a while.My friends ask if I 've started seeing somone yet.How can I even think of dating again right now.I have too much on my plate.Too much for someone new to quite handle I think.That's fine with me though.I think I might go back home for a little while and be with my family.That's what I think I need now.Out here there is only my sister tohelp and that can be overwheling for her wihich is understandable.Back home there are more options so that not one person gets stressed out.I have put her through alot this year and she deserves the break I think.Thanks for listening Gojogo.You have a good ear.

[G0J0G0]

You are welcome Copper,
I am sorry to have quoted your name incorrectly, this seems to happen more frequently since RSD invaded my/our life. I am so glad that you are doing better and will be praying for you and yours. It is unfortunate that the relationship ended with your fiance' but better to know now than when it is too late. I am sure your sister welcomes the opportunity to take care of you but I can understand you not wanting to expect to much from her for it is a huge load to care for someone with our condition. My wife does a masterful job and I can tell at times I am a hand full. My bride of 26 yrs. swears whe wouldn't have it any other way but I KNOW it is much more difficult than most people can imagine.
Allow me to say, if at anytime I can offer an extra set of ears I can be reached here or through a site called rsdandyou,com (a support and information site). And remember the Lord will always be there for you for He states "He will never leave you or forsake you" and He is a Friend that sticks closer than a brother, and you will never get a busy signal when you dial His number. Have a great day and be blessed, and I will try to get the name straight {grin}, gojogo

[Copper]

You made me cry at the end of that about God.You are right.Thank you so much for comforting me.Your wife sounds like a ver special person.You are very lucky to have someone take care of you so well.I could only wish for that some day(ina man that is :) ).I'm heading to the movies to see a midnight showing of Hellboy 2! Something fun to do after work.This week has been rough.I will look you up on that sight.You seem to bring comfort and knowledge to what I need to hear.Thank you so very much.Talk to you soon.

[G0J0G0]

Hi Copper,
You are right she is more than special, truly a help mate in every since of the word. I hope the movie went well and you are enjoying many pain free hours of relief. On the site I mentioned there are many people that share our journey and would love to offer a hand or word of encouragement making it through this endevor. Look me up, and enjoy the informatin that others share, have a blessed day, gojogo

[G0J0G0]

Hi Cooper,
'Jus kidding I mean Hi Copper, how are you this evening. I was reading up on some others here and ran across your name and noticed that you haven't posted anything lately and wanted to check and see how you are holding up. Have you been able to keep the pain in control, and how are things in general? I don't mean to be nosy, just concerned that things are going well for you and yours. keep in touch and be blessed, g0j0g0

[Copper]

Hello GOJOGO,
Things have been better.The last few days I have been in a wheelchair becasue my RSD has taken a turn for the worse.I can't walk right now and it hards for me to even get out of bed becasue the pain is so intense.I am flying back to my home state Massachusetts to recieve some good medical care.I'm just not being taken care of here.It has progressed quite rapidly.Back home I have doctors set up already to take over my care.I am taking a medical leave of absence so I'm not sure how long I will be gone.For example I ran out of pain meds last night and becasue my doctor only works 3 day s out of the week I didn't have any for this morning.Mornings are the worse for me.It's hard to even move.My sister called the doctors office at 8am when they opened and my doctor has not given me a prescription yet and it 10 hours later so I am at work in a wheelchair suffering with no pain meds.Today sucks.It is my last day at work before my medical leave and I am flying home this weekend.My employees are throwing a good luck pot luck for me.I weill miss them and the work but I just can't concentrate any more.It's too difficult.My memory is shot,my patience level has dropped and my frustration level on some days goes thruogh the roof.I wish I had better news for you.How have you been?Have you ever taken Lyrica for pain meds.How does it wokr for you?I'll keep in touch.Please do so yourself.Thanks for everything.

[G0J0G0]

Wow,
I feel your pain and understand taking a leave of absence for treatment. And in this journey I wish you well and hope that the docs in Mass. can offer you the treatment you need and deserve. The reasons you mentioned is the reason I have been out of work basically since diagnosis. Keep monitoring the site here or look me up on rsdandyou,com and let me know how things progress and how your well your pain is controlled. Have a great and safe trip and be blessed, gojogo

[Vincenza Kenner]

I too feel exactly as you do at times but the two people in my life ( My husband and son) that help me all the time remind me that they really love me and would rather help me then have a total stranger come in and help. I have RSD but in my wrist and slowly going thru out my entire left side. I do lots of crying but the only thing that seems to have temporary relief is lots of prayers. I don't know if you are a believer but I sure am and if I can't look up to God for help, who else can I look up to???
Just try it. I know it won't help for as long as you want it to but it sure makes you feel better after you do it. Best of luck,
Sincerely,
Vincenza (Vicki) Kenner Goodridge, Minnesota