A world withough suffering. A world with no pain. We could live life the way we want to. There would be no premature death, no illness or disease. Life would be worth living.

Genetics has come a long way since our parents time and since their parents time. Vaccines, new medical treatments and new research topics spring up every day. If somehow we could end suffering, if by chance we could end pain, would it be worth it?

As genetics expands we get the feeling that eventually we will have the potential to eradicate all human suffering from the earth. The feeling is electrifying. Think about it though, we would be killing people. The glimpse of this world we would be creating is scary. Our ideas about the eradication of suffering is optimistic but are they really so far away? A world in which so many people are found, are considered , unfit to even be born doesnt sound like the ideal life to me.

There is a difference. We could use gene therapy to treat medical conditions, not get rid of them. As much as I hate suffering with RSD, and as much as I hate seeing other people suffer, to declare that we absolutely know who has and hasnt the right to life at all is unimaginable.

I personally dont trust the human population to be able to decide. After all we are only human. We dont know what will happen today or tomorrow so how can we make choices that will affect our decendants forever?

This stuff I'm talking about, it shouldnt be only talked about in small groups. No, it should be discussed everywhere, with everyone. Especially kids. We are the future, we need to know about this stuff.

I think that by completely getting rid of human suffering we would be getting rid of what makes us human in the first place.

Speaking from my point of view, I have learned so much from my suffering with RSD. I have realized what we would be missing if we were perfect.

From RSD I learned what truely matters in life. I learned that I can conquer my pain over time if I try hard enough. I learned that I can help other people with RSD through their pain with words. I dont have to be a genetisist to help people who suffer like me.

My point is, are we really trying to eradicate pain and suffering or are we trying to play the role of God? Are we trying to protect ourselves and our family members from pain or are we trying to play with the lives of our friends.

Life without suffering would be great but...
I dont trust US.

Yes, as a physical being, pain is important to experience in order to survive. But, a lifetime of agonizing pain is hell on earth. If one was to acquire a painful syndrome and suffered for any length of time then relieved completely of the pain, that would be heaven on earth for that person, their family and friends.

And that is where our faith in the Lord comes in. Accepting Christ as our one and only savior, and gaining salvation brings us to an afterlife free of pain. We are only here for a short time (even though every second feels like a thousand years) Hang in there, and I pray God comforts you in your thoughts and pain.

There are many types of pain,,physical and mental,and inner from the heart wrenched,,,,,But everything worth haveing ,has a price,discipline,suffering,ethics,integrity,,,,suf fering builds character,perserverance,patience and love and values,,,,,And as my sister in Christ just mentioned,,,Christ had to suffer to take away the sins of the world,,God the father would only accept a pure unblemished sacrifice as a sin offering,,the pure for the unpure,,He had to be in everyway made likemankind,,even in his humanity to not only look like us but to feel pain,,no special attributes to alleviate the pain forwhich he knew he would suffer,[Hebrews 2;17-18}for he was the biggest phophet that ever lived,,,,,,When i feel bad about the pain that I suffer and it is great at times,,,I am ashamed of my weakness,my disgrace,,I am a pathetic feeble man,unworthy to ever being counted,I am an embarrassment to mankind and to my maker,,,,,,,,,,,,Isaiah 52:13-15 says that Christ was beaten so bad before being hung on that tree for us,,that his appearance was so disfigured beyond that of any man and his form marred beyond human likeness,,,,,,,,,,,,{translation],,he was beat so bad,you could not even tell or make out that he was a human being,,no man has ever went thru the pain and suffering that he endured,,,,,Im a pitifull man not even worthy of mentioning his name,,,,,,,,,I at times because of my pain,,welcome death,,,wishing for its arrival,,but I am being told in my heart by God,that,,that would be the selfish way out,,there is work for me to do,,I must find the strength to endure and retain my joy and appreciation of life for which the lord has gracously given me,instead of selfishly worrying about myself,,I need to focus on others,,,,The lord also revealed to me,if I left early,,,the damage that I would cause and pain I would infllict on my wife,selfishly leaving her to deal with all of this on top of what problems she already has,,,,,,,,,,,So I must change my attitude and find joy and peace in the Lord and enjoy my wife who is my dear friend

Mr. King,

There is another significant side to this disease that we the patient, and you the caretaker that I do not understand. With respect to my husband and children how does this impact your lives. I see the frustration on my husband's face at times, I see him doing chores that I always took care of, We do not socialize much anymore, due to the time duration that my body can withstand. He does everything in his power to keep my stress level down, including keeping secrets with the kids. My daughter's would love nothing more than a trip to the mall with me, or breakfast, instead there are days they just have to settle for a cup of tea and a good movie. I always encourage them to go and do things without me, but often they won't for fear of leaving me out. I do the very best that I can do in a day and yet I know deep down in my heart it just isn't enough. What if anything can we do to strengthen you. Where do you get your strength? It is difficult to keep a good attitude when dealing with a loved one with this disease? My husband is wonderful to me, he gets me through some really bad days, and I really do not know what I would do without him. 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.

God Bless you and all caretakers, you are truly a blessing in our lives.

Jeanie

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

Hi Jim.

I live on the Eastern Shore near Chestertown. It is a lovely area! Wouldnt trade it for the world!

Suzy and I have been going to eastern shore our whole lives. We both grew up in the DC area, primarily Md. I've got friends who live southeast of you in Snowhill, MD. We've looked at homes in all three states, Del, Md and VA. Before Suzy's accident we were looking very closely at Captain's Cove in VA just over the Md-VA border. A gated community with a golf course on the Chincoteague Bay. But of course things have changed now. VA is out because of a lack of quality medical facilities because of lower population and the fact VA isn't to swift with medical care infrastructure in the first place compared with Md and many other states. Also, I hesitate to move to estern shore because of lack of family presence and possible help and support for Suzy if something happens to me. But, if we do it'll be Del. or Md.

Kim, a little trivia for you. Did you realize that the first settlers to the new world may in fact have settle in eastern shore? That these settlers may come from Europe not Asia? If you are courious look up the history of the Clovis Indians in which they where discovered in New Mexico dating back 10,000 years. But in the last 20 years 400 clovis sites have been found in the Washington DC area and the oldest dating back 14,000 years on eastern shore. Just a couple of years ago a new Wilson Bridge was built to replace the old one on the Potomac river. Clovis spear points were discovered along the shoreline. These Clovis points resemble exactly spear points of european origin not asian. Very interesting.

Dear Jim,

I apologize for the late response to your courteous reply. Your response to my questions were simply astounding due to the fact that my husband has said some of the exact same things. This disease is very difficult to manage for both the pt and the caregiver. I am just amazed at times how my husband just handles this with steadiness and ease. Never judges me nor criticizes me for not being able to do simple tasks on a given day. You are both truly noble and honorable men.

It sounds as though your situation is very similar, in just a fleeting moment all of your goals and dreams have been changed or maybe temporarily rearranged, that is how I prefer to look at it.

I do try to keep things as normal as possible for the sake of the kids, however, with this disease it is almost impossible to not endure major lifestyle changes that affect the whole family and that is really hard to handle at times. I too, like your wife actually tried pushing my husband away, in my mind I really did and do think he and the kids would be better without me. I tested his love and faith, as if you guys don't have enough on your plate. There are times I would actually get angry with him for being able to do some things that I can no longer endure. Silly isn't it. But, like you, he stood his ground and proved himself that we were in this together and without me he had no dream!!!

I recently had to take a week trip to my parents, they live in the country up north, on a one level house where I can move around much better. My son drove me, I do this a few times a year to give my family somewhat of a break and of course I always enjoy my time with my parents.

I am glad to hear that your wife is doing better. I pray that her disability comes through for both of you, I am sure that will take some of the burden off of you. God Bless you Jim, thank you so much for your support and sharing. Sometimes just hearing things from another person can make a world of difference. You and Suzy are truly an amazing example of for better or worse, in sickness and health. May you both have time to recapture a part or all of your dreams.

God Bless "Cheers to all Caretakers"

Jeanie