[lorigood243]

Hello Friends

Its one of those days....I have had internal RSD for 5 years that has me mostly in bed all day. My care taker is my husband of 28 years. We use to have such an active life before this struck me following gallbladder surgery. I was just diagnosed with RSD 3 months ago and finally have better meds so Im not in constant pain, but it hasnt helped me be free enough to walk well. Oh i also have 75lbs of edema on the right side of my abdomen and now within the past 2 weeks, my left forearm has started to swell. I know RSD may worsen over time...Im not ready to accept that. Its too overwhelming. What can be worse than being stuck in bed at age 48? Well at least im not stuck in bed in constant pain anymore...so thats a blessings! I work from home selling office supplies. I had been doing this for 20 years before I got sick, so i am blessed i have work i can do from home. My hobby is making jewelry for myself and friends and family. I have always been the main bread winner, while my hubby was a stay at home dad raising our twin girls. Now our girls are 19 and off to college. So he is here taking care of me. We lost our home 2 years ago because my income went way down when i got sick. Now that I am out of pain, I am able to work more and hope to get our income back up.

So thats a picture of my life. He is 58 and he is devoted to me and has taken care of me for the past 5 years. He is a loner, always has been and doesnt have any friends. His world is me. He use to have hobbies...but went away after I got sick. He reads alot and watched TV and cleans the house and is a great chef. He doesnt drive because he lost vision in one of his eyes, so we go out about 3 times a week if I drive us, which i fortunately can still do.

Do any of you have a similar situation where RSD has down scaled a great active life that you once had and its just you, your caretaker and RSD? Hubby and I get along great but of course get on eachothers nerves now and then. With all of my health problems there is no chance of having an intimate relationship that we once had. RSD robbed that too. I think hubby is depressed but wont see a doctor about it. I dont feel depressed like i need meds to help me, but Im certainly not happy about my situation. But I dont cry over it i just deal with it, what else is there to do?

Any suggestions on things to do to improve my quality of life for me and especially my hubby? Sometimes when your in the middle of a room full of problems, you cant find the obvious door to open to get a breath of fresh air...

I appreciate your thoughts
Lori

[jenno]

Hi Lori,

Thanks for sharing this very heartfelt post. I am a caregiver, like your husband, so I cannot even pretend to say that I know your pain.

But, in reading your post, it is very apparent that you are an amazing woman, and I am certain that even though at times your husband may be overwhelmed with the situation, he realizes that he has been blessed to share this very challenging journey with you.

It is also evident that you have overcome tremendous obstacles, and continue to do so each and every day, so although you are looking to the forum for additional coping skills, and I can't really offer much advice ... I am confident that you will continue to find the strength and wisdom to cope.

Thank you for your post. It really touched my heart.

Originally Posted by lorigood243

Hello Friends

Its one of those days....I have had internal RSD for 5 years that has me mostly in bed all day. My care taker is my husband of 28 years. We use to have such an active life before this struck me following gallbladder surgery. I was just diagnosed with RSD 3 months ago and finally have better meds so Im not in constant pain, but it hasnt helped me be free enough to walk well. Oh i also have 75lbs of edema on the right side of my abdomen and now within the past 2 weeks, my left forearm has started to swell. I know RSD may worsen over time...Im not ready to accept that. Its too overwhelming. What can be worse than being stuck in bed at age 48? Well at least im not stuck in bed in constant pain anymore...so thats a blessings! I work from home selling office supplies. I had been doing this for 20 years before I got sick, so i am blessed i have work i can do from home. My hobby is making jewelry for myself and friends and family. I have always been the main bread winner, while my hubby was a stay at home dad raising our twin girls. Now our girls are 19 and off to college. So he is here taking care of me. We lost our home 2 years ago because my income went way down when i got sick. Now that I am out of pain, I am able to work more and hope to get our income back up.

So thats a picture of my life. He is 58 and he is devoted to me and has taken care of me for the past 5 years. He is a loner, always has been and doesnt have any friends. His world is me. He use to have hobbies...but went away after I got sick. He reads alot and watched TV and cleans the house and is a great chef. He doesnt drive because he lost vision in one of his eyes, so we go out about 3 times a week if I drive us, which i fortunately can still do.

Do any of you have a similar situation where RSD has down scaled a great active life that you once had and its just you, your caretaker and RSD? Hubby and I get along great but of course get on eachothers nerves now and then. With all of my health problems there is no chance of having an intimate relationship that we once had. RSD robbed that too. I think hubby is depressed but wont see a doctor about it. I dont feel depressed like i need meds to help me, but Im certainly not happy about my situation. But I dont cry over it i just deal with it, what else is there to do?

Any suggestions on things to do to improve my quality of life for me and especially my hubby? Sometimes when your in the middle of a room full of problems, you cant find the obvious door to open to get a breath of fresh air...

I appreciate your thoughts
Lori

[lorigood243]

Thank you Jenno

Such a thoughtful reply. I am so sorry that you have a family member with RSD. They are blessed to have you and all you do to keep them uplifted. The words in your reply to me, tell me that you are an amazing woman with boundless energy and so strong. I know its not easy being caretaker. Some days are so much harder than others when your loved one lies in pain. Just know how grateful they must feel to have you in their lives. not everyone can be a care taker. After i posted yesterday hubby and i had a long talk and he affirmed how much he adores me and is grateful for me earning the money so he can be here to care for me. So i am much better today but still want to find ways to enrich our lives. I was surprised that i didnt get more replies...it left me wondering if people arent doing well with their caretakers. at least I know from your reply that one person is doing well.
Peace and blessings
Lori

Originally Posted by jenno

Hi Lori,

Thanks for sharing this very heartfelt post. I am a caregiver, like your husband, so I cannot even pretend to say that I know your pain.

But, in reading your post, it is very apparent that you are an amazing woman, and I am certain that even though at times your husband may be overwhelmed with the situation, he realizes that he has been blessed to share this very challenging journey with you.

It is also evident that you have overcome tremendous obstacles, and continue to do so each and every day, so although you are looking to the forum for additional coping skills, and I can't really offer much advice ... I am confident that you will continue to find the strength and wisdom to cope.

Thank you for your post. It really touched my heart.

[Grettas3]

Hi Lori,

I don't have CRPS but my husband does so I can relate to how he may be feeling. One thing that I have just recently done is to start posting on this site...I cant tell you how much all the advice and warm wishes help. I know that from my point of view...all I wish is for my husband to be comfortable. It hurst us to have to see you all go thru this and not be able to help it go away, I feel helpless sometimes. Sounds to me like you have a very special, kind-hearted husband. When Im feeling really frustrated and overwhelmed it really helps when my hubby gives me a big hug and expresses how gratefull he is for everything I do. Our whole life has changed too...he doesn't like going out anymore and when there is too much activity in our house he gets anxiety. That makes it hard especially because we have a 13,9 and 3 yr old...nothings quiet about a precocious, rambunctious 3 yr old!

So has life changed? Yes..it has. Money is tight, we cant go out like we used to, the kids fight more, DH and I fight more, sex isnt the same, nothing is the same and sometimes I get very angry and depressed that this happened. But I , just like your husband Im sure, am not mad at my hubby. I am ****** that this disease came into our home..its just not fair.

Originally Posted by lorigood243

Hello Friends

Its one of those days....I have had internal RSD for 5 years that has me mostly in bed all day. My care taker is my husband of 28 years. We use to have such an active life before this struck me following gallbladder surgery. I was just diagnosed with RSD 3 months ago and finally have better meds so Im not in constant pain, but it hasnt helped me be free enough to walk well. Oh i also have 75lbs of edema on the right side of my abdomen and now within the past 2 weeks, my left forearm has started to swell. I know RSD may worsen over time...Im not ready to accept that. Its too overwhelming. What can be worse than being stuck in bed at age 48? Well at least im not stuck in bed in constant pain anymore...so thats a blessings! I work from home selling office supplies. I had been doing this for 20 years before I got sick, so i am blessed i have work i can do from home. My hobby is making jewelry for myself and friends and family. I have always been the main bread winner, while my hubby was a stay at home dad raising our twin girls. Now our girls are 19 and off to college. So he is here taking care of me. We lost our home 2 years ago because my income went way down when i got sick. Now that I am out of pain, I am able to work more and hope to get our income back up.

So thats a picture of my life. He is 58 and he is devoted to me and has taken care of me for the past 5 years. He is a loner, always has been and doesnt have any friends. His world is me. He use to have hobbies...but went away after I got sick. He reads alot and watched TV and cleans the house and is a great chef. He doesnt drive because he lost vision in one of his eyes, so we go out about 3 times a week if I drive us, which i fortunately can still do.

Do any of you have a similar situation where RSD has down scaled a great active life that you once had and its just you, your caretaker and RSD? Hubby and I get along great but of course get on eachothers nerves now and then. With all of my health problems there is no chance of having an intimate relationship that we once had. RSD robbed that too. I think hubby is depressed but wont see a doctor about it. I dont feel depressed like i need meds to help me, but Im certainly not happy about my situation. But I dont cry over it i just deal with it, what else is there to do?

Any suggestions on things to do to improve my quality of life for me and especially my hubby? Sometimes when your in the middle of a room full of problems, you cant find the obvious door to open to get a breath of fresh air...

I appreciate your thoughts
Lori

[lorigood243]

oh Grettas

Thank you so much for replying. As in your house, SO much has changed in mine. I cant imagine going though this illness with a small child to raise. Your love and heart must be as big as Kentucky to do all that you are doing.

Yes I do thank my hubby regularly and hug him. Sex is non existent...he doesnt ever bring it up but i could do more to make him feel loved on that part. When you are in pain, its hard to think passionately. But i know that would help. I try to get out about 3 times week but its hard. if we go to a store and dont need much he always runs in and i wait in the car. If we have a loot to get i have to make sure thy have an electric wheel chair for me to get around in because i cant walk well. I need to build up my strength
its all hard and takes energy. But I want a better life, so i will hav to work on it.

Stay strong and know how important you are to your family. I can tell you are a special lady. Its very nice to meet you. Thank you again for your kind reply. Big hugs to you! You Have helped me, more than i can say.
Lori

Originally Posted by Grettas3

Hi Lori,

I don't have CRPS but my husband does so I can relate to how he may be feeling. One thing that I have just recently done is to start posting on this site...I cant tell you how much all the advice and warm wishes help. I know that from my point of view...all I wish is for my husband to be comfortable. It hurst us to have to see you all go thru this and not be able to help it go away, I feel helpless sometimes. Sounds to me like you have a very special, kind-hearted husband. When Im feeling really frustrated and overwhelmed it really helps when my hubby gives me a big hug and expresses how gratefull he is for everything I do. Our whole life has changed too...he doesn't like going out anymore and when there is too much activity in our house he gets anxiety. That makes it hard especially because we have a 13,9 and 3 yr old...nothings quiet about a precocious, rambunctious 3 yr old!

So has life changed? Yes..it has. Money is tight, we cant go out like we used to, the kids fight more, DH and I fight more, sex isnt the same, nothing is the same and sometimes I get very angry and depressed that this happened. But I , just like your husband Im sure, am not mad at my hubby. I am ****** that this disease came into our home..its just not fair.

[keep smilin]

Originally Posted by lorigood243

oh Grettas

Thank you so much for replying. As in your house, SO much has changed in mine. I cant imagine going though this illness with a small child to raise. Your love and heart must be as big as Kentucky to do all that you are doing.

Yes I do thank my hubby regularly and hug him. Sex is non existent...he doesnt ever bring it up but i could do more to make him feel loved on that part. When you are in pain, its hard to think passionately. But i know that would help. I try to get out about 3 times week but its hard. if we go to a store and dont need much he always runs in and i wait in the car. If we have a loot to get i have to make sure thy have an electric wheel chair for me to get around in because i cant walk well. I need to build up my strength
its all hard and takes energy. But I want a better life, so i will hav to work on it.

Stay strong and know how important you are to your family. I can tell you are a special lady. Its very nice to meet you. Thank you again for your kind reply. Big hugs to you! You Have helped me, more than i can say.
Lori

Shame that RSD has linked us here but Iam still very grateful having the pleasure to meet you ... I understand your situations..one step or movement here nor there makes such a difference in our lives.. Funny, as I will ask my kids or my husband to do something for me..it's only 3 steps from me and just as I ask it..I realize how silly it is..or isn't...and funnier that I was a tennis instructor and so involved in sports all of my life..and here I am counting my steps.. due to intense pain form our illness...but my real point in this is.. my heart has not changed..what i hold in my heart is still the same..love and respect for all of my family and friends and yet to be friends..there is plenty to go around and I can't wait to share it.. it trully is the small more free things that matter to us..whether it be a smile or a giggle between friends..even a tear or two..We'll take it..with pride!! We all doing great..just great..even in spite of our 3 lettered friend, RSD!!

Much love, Kathy

[lorigood243]

Thank you Kathy....

Your reply just brought tears to my eyes! Yes, I count every step. Yes things that are close to me that I should be able to just get up and do it for myself...just makes my head spin. My husband is very kind about getting things close to me without giving me a hard time. I keep my requests to the bare minimum to not exhaust him, he has health issues too. I worry about him and what if he gets sick, how will we manage. Sigh...i just have to deal with my current circumstance and try to to think of "what ifs".

This afternoon something weird happened to him when we were getting out of our car. he had leg cramps, felt exhausted and after about 10 minutes rest he said he was okay..then he got a head ache...excedrin fixed that...but he worried me that he had a mild stroke. He doesnt have insurance and wouldnt let me take him to the hospital just to get checked. Of course im freaking out, he says he feels fine now. Please place him in your prayers that he will be perfectly fine, his name is Steve. Im worrying like crazy, which helps nothing! I just cant take one more thing. I feel like i live on the edge with RSD of my health issues sometimes changing daily.

I wish you peace Kathy. That you may gt stronger and less pain each day. I will keep you in my prayers that only good things will come your way!
Hugs and blessings
Lori

Originally Posted by keep smilin

Shame that RSD has linked us here but Iam still very grateful having the pleasure to meet you ... I understand your situations..one step or movement here nor there makes such a difference in our lives.. Funny, as I will ask my kids or my husband to do something for me..it's only 3 steps from me and just as I ask it..I realize how silly it is..or isn't...and funnier that I was a tennis instructor and so involved in sports all of my life..and here I am counting my steps.. due to intense pain form our illness...but my real point in this is.. my heart has not changed..what i hold in my heart is still the same..love and respect for all of my family and friends and yet to be friends..there is plenty to go around and I can't wait to share it.. it trully is the small more free things that matter to us..whether it be a smile or a giggle between friends..even a tear or two..We'll take it..with pride!! We all doing great..just great..even in spite of our 3 lettered friend, RSD!!

Much love, Kathy

[keep smilin]

Originally Posted by lorigood243

Thank you Kathy....

Your reply just brought tears to my eyes! Yes, I count every step. Yes things that are close to me that I should be able to just get up and do it for myself...just makes my head spin. My husband is very kind about getting things close to me without giving me a hard time. I keep my requests to the bare minimum to not exhaust him, he has health issues too. I worry about him and what if he gets sick, how will we manage. Sigh...i just have to deal with my current circumstance and try to to think of "what ifs".

This afternoon something weird happened to him when we were getting out of our car. he had leg cramps, felt exhausted and after about 10 minutes rest he said he was okay..then he got a head ache...excedrin fixed that...but he worried me that he had a mild stroke. He doesnt have insurance and wouldnt let me take him to the hospital just to get checked. Of course im freaking out, he says he feels fine now. Please place him in your prayers that he will be perfectly fine, his name is Steve. Im worrying like crazy, which helps nothing! I just cant take one more thing. I feel like i live on the edge with RSD of my health issues sometimes changing daily.

I wish you peace Kathy. That you may gt stronger and less pain each day. I will keep you in my prayers that only good things will come your way!
Hugs and blessings
Lori

I am very happy to keep both you and Stve in my prayers.. it would be my pleasure and I am happy you shared with me... Please, try not to worry .. I totally know that is easier said than done but it is very important for you to stay comfortable with RSD.. We try to keep guard up from a flare..worry and stress will cause a flare..So how about I promise you that I, myself and our other wonderful family here will keep you safe..Allow us to watch over you..taking charge while you rest and relax.. both you and Steve..you deserve a rest!! We will all pray for you and Steve! My wish for you is an enjoyable night..

Hugz, Kathy

[daniella]

I am sorry for all the pain and added stress the RSD causes for us plus our loved one. So many caring people on this board who all deserve health and happiness.
To the OP I know your husband can't drive but do you think he could join some group or type of hobby? I was reading this book and it said how important it is for our loved ones to take care and do things for themselves. It may give you both a break. Even without a health condition being with another person so much can cause tension. Do you guys have anything you like to do together? I know you said he lost vision in 1 eye but can he play a board game or watch a movie? I think sometimes even small things can help lift each other spirits. Not that it is going to solve things but any little lifter can help
As for finance issues I wish I had answers. People without health condition don't realize how this not only impacts how we feel but also daily life in every aspect. Jim I am so sorry and I wish you and your wife luck in Nov. You and the other loved ones who come to the board to learn and support are amazing and I hope you see that.
On a side note for the first 2 years of this I did not see anyone for the mental impact of this condition. I had in the past before my RSD/PN but had the feeling if one fixed my pain then mentally I would be fine. Well that was not happening so I went back to psychiatrist and I do biofeedback as well. Obviously mentally it is still a daily battle and the pain is high but I am still glad I went. I have learned to cope better with life and pain in general. I just encourage others who either have RSD or are a loved one with it to consider going.

[lorigood243]

Thank you so much for your loving reply. I feel like you were sitting here in my living room as you wrote your post.

I think I need the mental help. I get scared of the unknown of what each day might bring....you know what i mean. I have internal RSD and i fight acid reflux and diarrhea and lots of little problems that i dont know if they are RSD or something else. It makes Steve crazy that i take so much medicine both prescribed and OTC. I read all the different posts here and hate to whine about my own problems when there are so many others that suffer in their own ways.

Steve and I went to a concert at our local Library Sunday night. We have a very nice time. I had to sit in my wheel chair he sat behind me and we held hands and just enjoyed being out together. There are many Fall festivals where we live and we are planning to go to some of those. I hate that he has to push me in my chair, but he doesnt mind at all. Hes glad to be out together too.

So after all my thinking which i over do...i think with all the advice I received here...i think we will be okay. I will check for mental health help at my local county facility. My health insurance doesnt offer good coverage.

Wishing you a blessed day and many thanks!
Lori

Originally Posted by daniella

I am sorry for all the pain and added stress the RSD causes for us plus our loved one. So many caring people on this board who all deserve health and happiness.
To the OP I know your husband can't drive but do you think he could join some group or type of hobby? I was reading this book and it said how important it is for our loved ones to take care and do things for themselves. It may give you both a break. Even without a health condition being with another person so much can cause tension. Do you guys have anything you like to do together? I know you said he lost vision in 1 eye but can he play a board game or watch a movie? I think sometimes even small things can help lift each other spirits. Not that it is going to solve things but any little lifter can help
As for finance issues I wish I had answers. People without health condition don't realize how this not only impacts how we feel but also daily life in every aspect. Jim I am so sorry and I wish you and your wife luck in Nov. You and the other loved ones who come to the board to learn and support are amazing and I hope you see that.
On a side note for the first 2 years of this I did not see anyone for the mental impact of this condition. I had in the past before my RSD/PN but had the feeling if one fixed my pain then mentally I would be fine. Well that was not happening so I went back to psychiatrist and I do biofeedback as well. Obviously mentally it is still a daily battle and the pain is high but I am still glad I went. I have learned to cope better with life and pain in general. I just encourage others who either have RSD or are a loved one with it to consider going.