[elijjennings]

I have experienced such an array of emotion since being diagnosed with Reflex Sympathetic Dystrophy. My pain psychologist told my family and myself that we needed to properly mourn and grieve the life that we had. We needed to grieve the dreams and goals we had planned for our lives, as pain drains the energy from me daily. I have tried to let go of things like my freakishly clean house, so that I can hope to spend five minutes sitting on the floor hugging my kids. Life feels impossible some days. We made the hard decision to the have our home foreclosed on, our dreams crushed. My health is now in perpetual crisis, we have looming medical debt, and my marriage in a state of perpetual miscommunication. It can all be overwhelming on a day-to-day basis to say the least. Yet somehow, I feel hope when I see progress as we try and work to grow into a stronger family unit throughout these years of hardship.

Work is all our family life has become these past fifteen months. Working towards understand and resolving my medical issues. The stress and pressure such evil incurable chronic pain diseases puts on a family is almost insurmountable. My husband and I have begun regular counseling visits to open up communication, as chronic pain makes is extremely difficult for me to communicate. I try and explain it to my husband by having him imagine someone cutting off his genitals and while standing there having that happen, have a rational logical conversation with me. My pain is screaming in my head all the time. The pain screams while I try to hug my children, even though often just their touch is too excruciating. The pain screams at the top of its lungs while my family works endlessly to exist.

My sister, Sarah, is been my angel these past few months. She has been staying with our family, caring for our children, through the end of the month. She came in May and has been the stay at home mother that I long to be, as I lay in my bedroom watching my children play thru the doorway. I feel guilt at the sacrifice she has made in giving up her summer before starting college. After my sister returns home, we will be putting our children in childcare for the first time in their lives is our only option. Being a stay at home Mom has been a dream of mine since I was a child. Having a husband that helped that dream come true was such a blessing for the past four years. Although I am devastated at the thought of my children being away from me during the day, I know being in a positive atmosphere amongst their peers is what they need in their lives right now.

I struggle with the guilt of my husband, who is a full time accountant with a BS degree, is trying to get a job stocking shelves at Wal-Mart at night to afford the cost of childcare, along with my healthcare. Greg is a remarkable man that has picked up all the slack of the loss of a parent, with no complaints. It rips my heart apart to see the stress on his face over the various struggles we have undergone the past fifteen months. The strength in our marriage comes from the strength of our friendship that we have always had. Our marriage also now relies on us communicating with a counselor as the medication and the pain make it hard to communicate with me.

Remission with Reflex Sympathetic Dystrophy appears possibly if treated aggressively and quickly, from my research. The lack of knowledge within the medical community is atrocious. The lack of treatment options is heartbreaking. Awareness is the only hope I have of helping the community of people I have met through this catastrophic disease. For the thousands of people suffering with RSD/CRPS I hope to send my story to as many people as possible with the ambition of raising awareness.

Starting a blog, and talking more on these forums is what I hope to be a way of sharing our personal family struggles with chronic pain and Reflex Sympathetic Dystrophy. From the very few support groups I have found for chronic pain there seems to be a lack of discussion on the effects of our families lives, our futures, and our heartaches. I want my blog to be a place free from judgments. Where families, patients, friends, and the medical community can come and share the ways chronic pain disease has affected their lives, in the way that this site does for many of us.

It is impossible for me to communicate effectively the amount of pain that RSD causes me on a daily basis. If cutting my arm off had even the remote possibility of relieving even a small amount of the pain I would not hesitate. I know there are many others out there suffering just like me, and many much worse. I hope we can all reach out and form a community along with our caretakers and medical teams to help bring a better understanding to not only Reflex Sympathetic Dystrophy, but also the effects of chronic pain, medication, and health care treatments on patients and family life.

I first found this fourm when I was diagnosed wih RSD, but I wasn't ready at that point to talk so openly about this issues in my life at this point. Finding groups like these, and starting my blog will all be a way for me to heal.
Thank you for taking the time to listen to my personal struggle with this disease. So far I’ve been kicked in the gut and punched in the face but I’m still swinging. I refuse to give in to the disease for myself, for my family, and for anyone that has been afflicted with a chronic pain disease.
Eli
http://rsdburningsacrifice.blogspot.com

[Darlene]

Happy having you come to be with the whole family. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Seems you have been through some ruff times.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[ballerina]

Originally Posted by elijjennings

I have experienced such an array of emotion since being diagnosed with Reflex Sympathetic Dystrophy. My pain psychologist told my family and myself that we needed to properly mourn and grieve the life that we had. We needed to grieve the dreams and goals we had planned for our lives, as pain drains the energy from me daily. I have tried to let go of things like my freakishly clean house, so that I can hope to spend five minutes sitting on the floor hugging my kids. Life feels impossible some days. We made the hard decision to the have our home foreclosed on, our dreams crushed. My health is now in perpetual crisis, we have looming medical debt, and my marriage in a state of perpetual miscommunication. It can all be overwhelming on a day-to-day basis to say the least. Yet somehow, I feel hope when I see progress as we try and work to grow into a stronger family unit throughout these years of hardship.

Work is all our family life has become these past fifteen months. Working towards understand and resolving my medical issues. The stress and pressure such evil incurable chronic pain diseases puts on a family is almost insurmountable. My husband and I have begun regular counseling visits to open up communication, as chronic pain makes is extremely difficult for me to communicate. I try and explain it to my husband by having him imagine someone cutting off his genitals and while standing there having that happen, have a rational logical conversation with me. My pain is screaming in my head all the time. The pain screams while I try to hug my children, even though often just their touch is too excruciating. The pain screams at the top of its lungs while my family works endlessly to exist.

My sister, Sarah, is been my angel these past few months. She has been staying with our family, caring for our children, through the end of the month. She came in May and has been the stay at home mother that I long to be, as I lay in my bedroom watching my children play thru the doorway. I feel guilt at the sacrifice she has made in giving up her summer before starting college. After my sister returns home, we will be putting our children in childcare for the first time in their lives is our only option. Being a stay at home Mom has been a dream of mine since I was a child. Having a husband that helped that dream come true was such a blessing for the past four years. Although I am devastated at the thought of my children being away from me during the day, I know being in a positive atmosphere amongst their peers is what they need in their lives right now.

I struggle with the guilt of my husband, who is a full time accountant with a BS degree, is trying to get a job stocking shelves at Wal-Mart at night to afford the cost of childcare, along with my healthcare. Greg is a remarkable man that has picked up all the slack of the loss of a parent, with no complaints. It rips my heart apart to see the stress on his face over the various struggles we have undergone the past fifteen months. The strength in our marriage comes from the strength of our friendship that we have always had. Our marriage also now relies on us communicating with a counselor as the medication and the pain make it hard to communicate with me.

Remission with Reflex Sympathetic Dystrophy appears possibly if treated aggressively and quickly, from my research. The lack of knowledge within the medical community is atrocious. The lack of treatment options is heartbreaking. Awareness is the only hope I have of helping the community of people I have met through this catastrophic disease. For the thousands of people suffering with RSD/CRPS I hope to send my story to as many people as possible with the ambition of raising awareness.

Starting a blog, and talking more on these forums is what I hope to be a way of sharing our personal family struggles with chronic pain and Reflex Sympathetic Dystrophy. From the very few support groups I have found for chronic pain there seems to be a lack of discussion on the effects of our families lives, our futures, and our heartaches. I want my blog to be a place free from judgments. Where families, patients, friends, and the medical community can come and share the ways chronic pain disease has affected their lives, in the way that this site does for many of us.

It is impossible for me to communicate effectively the amount of pain that RSD causes me on a daily basis. If cutting my arm off had even the remote possibility of relieving even a small amount of the pain I would not hesitate. I know there are many others out there suffering just like me, and many much worse. I hope we can all reach out and form a community along with our caretakers and medical teams to help bring a better understanding to not only Reflex Sympathetic Dystrophy, but also the effects of chronic pain, medication, and health care treatments on patients and family life.

I first found this fourm when I was diagnosed wih RSD, but I wasn't ready at that point to talk so openly about this issues in my life at this point. Finding groups like these, and starting my blog will all be a way for me to heal.
Thank you for taking the time to listen to my personal struggle with this disease. So far I’ve been kicked in the gut and punched in the face but I’m still swinging. I refuse to give in to the disease for myself, for my family, and for anyone that has been afflicted with a chronic pain disease.
Eli
http://rsdburningsacrifice.blogspot.com

You are so lucky to have such great family support. How is your husband doing? He was getting some good support from Jim but your husband has not been posting lately. Lots of wonderful caregivers on this site would be very willing to provide him with help!