RSD and our care takers
 

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

Thanks for sharing!
 

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.

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

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.

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

Hello friends..
 

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:grouphug:

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

Dear 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:grouphug:

Thanks lorigood243 for creating this post. I wanted to post here earlier but I'm at a loss for words on top of all the battles and fires I'm putting out. My wife has RSD these past 8 years. We both are going through the worst storms in our lives together of 30 years. We are struggling for her pain relief because we lost our insurance coverage and the bills are pilling up. We are very close to losing our home and are 2 months behind on our mortgage. The banks will not deal with me because my income dropped and do not make enough money. Social Services will not deal with my wife because I make too much money.:D I've had to come up with several methods to make ends meet with the help of people who know us very well and trust us on our word.

The good news is my wife, for the first time, will go before a SS admin judge this november 2 to acquire her SSDI in which it seems we've been battling for for years and it does look positive. I've filed for a home modification loan today. I also have my congressman looking into my wife's SS case and to push the bank to deal with us on the house. Our loan on the house is several years old. It is not upside down, no second mortgages or liens. We have $250,000 equity on a home in one of the few hot housing markets in the US. The bank knows this and was ready to foreclose within 2 weeks of being 2 months late on the mortgage without talking with us or going through the courts. It seems the banks are grabbing these homes at any excuse, this said by the congressman and his staff who now have a full time rep from his office to deal directly with this bank. The best news is if my wife does not get her benefit, in which she worked for 30 years and paid into, and or the bank does not approve a home loan modification I do have an investor who will back us up on preparing the house for sale quickly.

If we sell the home we will move a few miles from our State to Maryland which has a much better hi-risk Pre-existing condition insurance coverage than our current residence which is terrible to say the least. Sorry about the ranting but like I said said its one fire after another but I believe we will find less stress, very important for those with RSD of course, in a matter of months one way or another. Wish us luck!!! :):)

Dear Jim

to say my heart goes out to you both is an understatement! I live in Virginia o i understand a bit about our crazy laws. I call my husband my hubby because we have lived together for 28 years. He has always been covered on my insurance and my company just switched insurance companies and they wanted a copy of our marriage certificate, well i dont have one so they wont cover him...we have to get married so he can be insured. Its a long story but i wanted to wait until i was 50 to get married, but it will probably have to happen sooner so i can get him covered. BUT

in regard to your house problem....i lost mine to foreclosure in 2008 it was overwhelming but now since i have lived in an apartment, it has been the best thing to happen to me. the pressure of tying to keep and pay for the house feels good to be gone. I am an office supply sales person and have always done this. the past 5 years i have been working from home. My pain level had been so high i couldnt do very well but now that it i being managed better i am selling more. My hubby doesnt work because of his health problems and he takes care of me. its hard when a strong awesome life you once had turns upside down. Im just glad we got our kids mostly raised before we fell apart. I couldnt have done this if they were little, my heart goes out to those who have little ones.

It sound like you have good people advising you but i have an awesome loan officer in Virginia if you need someone, just let me know...email me at lorigood243@yahoo.com

blessings to you and your lovely wife Jim! I do pray that all will come to the best resolution for your quickly!
God bless you
Lori