Good morning Jeanie. Your response to my post took me by surprise because no one ever ask me my side of things before except very short comments from people I know. The impact on our lives has been sugnificant to say he least.
I'll first say we have no children, my wife Suzy and I have been together almost thirty years. She worked for years for a very large company, I've worked in the graphics business for many years. We had big plans to move out of the rat race and pay cash for a home on Maryland's eastern shore, a short distance from the Atlantic Ocean and the Chesapeake Bay. In 2002 Suzy tripped a fell, breaking her wrist and that was the end of our big plan.
Her wrist healed and the pain got worse. Within a year her doc stated that she thinks she has RSD and sent Suzy on her way. For two years Suzy jumped from doctor to doctor keeping this all a secret from me. Suzy never was fond of doctors ever since she was a little girl and avoided doctors before her injury. I have only known her to see a doctor twice before her injury. The impact was huge because she was afraid I'd leave her so for a couple of years she prepared herself for it. She told me she had RSD on a cruise in 2004 and of course I had know idea what RSD was. I read up on RSD and went into denial thinking there is no disease like this, can't be.
To make a long story short I witnessed the injustice she was going through with the insurance companies, doctors and as far as I'm concerned, the DEA. I've always loved my wife, would stand beside her at any cost but I had to prove it to her because in her mind she wasn't worthy. She did not want to be a burden to anyone, to me or her immediate family. She convinced herself that I was a lost cause, so I had to put myself into her shoes and try to understand her logic, thinking and her pain and RSD. I became her advocate. It has been a battle with the system the whole way. The tougher it gets the angrier and more determined I get.
Suzy lost her job in 2006. Our insurance rates skyrocked and now we have no insurance because of a Chapter 7 bankruptcy which denied us COBRA coverage and the Hipaa rates were too high. I pay cash for her treatment and meds which is cheaper than the insurance but is not sustainable over time. We did save plenty and this has kept us afloat but not for ever. We would have sold our house but the markets crashed.
But there is also the good news. Suzy, even though she's undermedicated, she has improved. She does trust what I tell her about us. Even with my old company going bankrupt I was unemployed less than a month. Suzy's date with a judge to recieve her SSDI benefit should be around springtime and it is this benefit that will make her feel, and I, much more secure knowing that she has some medical coverage allowing me to pick up supplemental insurance for her.
Your experinces and feelings are very similar to my wife's. Suzy feels very guilty for getting this disease and I've worked hard to convince her not to feel this way. We used to be very social on weekends but not much anymore. The positive of this is she thought I'd go insane staying in on weekends for the first time in decades but it was one of the things I did that surprised her. I'd stay home with her helping around the house as much as I could tolerate and liked it! , however, I will and do convince her to get out once or twice a month to visit our friends together. I only do things with her at my side, not physical or stressful events, mostly social at friends homes where she can lay down in a quiet space if needed. At first she wouldn't but I insisted because I believe this is beneficial to those in this condition as long as they are not going through a flare or are bedridden. There was a time she was bedridden and I slowly got her out and about, to move around, to work in her gardens etc. but, at the same time arranged things to be less stressful.
Suzy does as much as she can and thats good enough for me. She's tough and stubborn, was very athletic at one time and love her for still being here with me.
Jeanie, all you can do is do the best you can. Your husband only wants the best for you. When you have a good day I'm sure he's proud knowing that he's a good husband and father and wants you as his wife to be proud of him, that he's a good man, a responsibe, caring husband. This is very important for him. He wants to save you, protect you and your children, it is during these tough times that a real man can shine!
"What if anything can we do to strengthen you. Where do you get your strength?" My answer to this is to give a smile or a laugh when possible and my strength is my love for my wife and being a true husband and man, and to do the right thing. She took care of me all those years, so, now I'm taking care of her.
"It is difficult to keep a good attitude when dealing with a loved one with this disease?" It sure is, my attitude isn't the greatest all the time. I grew up in a very vocal Italian family that has a talent in raising its voice very loudly which isn't condusive to RSD at all and I've never been one to have much patients. But over all my attitude is steady as she goes.
"I do try to keep a good attitude, gratitude and encourage everyone". "I tell them this is not their burden to bare and yet it is". "If you have any input as to how the caretaker deals with your pain from watching a loved one suffer, do share." Jeanie, I think you pretty much summed it up. I can't think of anything different than what you've stated. Perhaps you can go to the mall with your children on off hours, when the crowds are at their lowest. Your husband and children may want you to get out more, depending on your circumstances of course. If at all possible give it a try but in a very low stressful way. like visiting friends but have the ability to brake away and relax somewhere when needed perhaps. Maybe go to the park etc.
I hope and pray that one day there will be a cure or a procedure that calms this disease at the very least. Your husband and children love you very much and will do anything for you. Please don't feel guilty, it puts everyone in a sad state and doen't really help. To give feelings of appreciation is enough, it makes the caretaker feel worthy. Thanks for your post Jeanie and take care. I pray for pain free days for you and your family!
jim