Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-07-2009, 12:42 PM #1
Breezy55 Breezy55 is offline
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Default Trying to Cope/Need Your Support

From Breezy55: Its not enough just to have RSD and all the pain that comes along with this painfull and misunderstood diesaes that we all have. Besides dealing with that,my Mom is in the end stage of Alzheimiers. My Dad and I had put her in a home for almost two and one half months,however you woud not believe the hidden cost's that were not given to us before Mom was placed there! Also when she was in the home my Dad started to go downhill so fast emotionally it was not like him. During this whole time I was staying at there condo. My Dad was recovering from his 2nd hip replacement. With him having that and with me with my RSD and my mom in the home,what a mess! Has anyone on this site gone thru this before? I need all your prayers and support on this one! My one and only brother live out in Utah,the rest of us live in Wisconsin. Well my phone is ringing right now,it is my Dad again. I have to run for now.
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AintSoBad (07-10-2009), Dew58 (07-07-2009), loretta (07-07-2009)

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Old 07-07-2009, 04:21 PM #2
loretta loretta is offline
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Hi Breezy,
I am so very sorry. It seems you are being hit at every angle. I know from experience.When my parents died, I did NOT have RSD. So that is a huge difference.I was 25 and health. My parents lived in Oregon and my husband and I lived across the country. But I am so very thankful I was able to go back and spend the last 4 months with my Mom. There was no hospice back in 1973, so I took care of here 24/7, learned to give shots, etc. My aunt and husband came out for the last month. 7 years later, my father developed heard disease, and my husband and I moved back. Dad lived a year, and I cooked two meals a day-he ate with us. My best friends mother, like a second mother to me, got Alzheimiers and was put in a home toward the end. I visited her weekly and the emotional pain of seeing her in that state was unbearable as was watching my mother slip away in death.
As I write this letter, my husband is getting ready to drive from Arizona to Washington State to see his mother. His dad died 4 years ago, and his mother still lives alone at age 86. She gets very very upset when we talk about assisted living. My husband has one sister that just lives a few blocks away, but she is 68 and has diabetes, rheumatoid arthritis, has had a heart attack, and generally feels terrible. My husband is 72 and is under the stress of caring for me, full body 13 yr patient of rsd. It's really tough trying to do your best in caring for elderly parents and they see things from their eyes only. My husband's sister doesn't get along with her mother or her father , when he was alive, for that matter. She talked her mother into getting a reverse mortgage, so she can drain all she can. Like charges her to go to the store, Dr. everything she can think of.
But that's no surprise. I just feel for my husband in having to have so mujch on his shoulders.
Please know that there are many of us that have been thru difficult circumstances, are thoughts and prayers go out to you. It did help when my husband got the State help that she qualified for. So many hours a week for house cleaning, grocery shopping, Dr. appointments. He calls his Mom every day and that helps. I call occassionally bot his Mom and Sister. Although sometimes that's a challenge. Please know we are thinking of you and realize what an emotional challenge this must be for you. Take care of yourself, loretta
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Old 07-07-2009, 05:11 PM #3
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Originally Posted by Breezy55 View Post
From Breezy55: Its not enough just to have RSD and all the pain that comes along with this painfull and misunderstood diesaes that we all have. Besides dealing with that,my Mom is in the end stage of Alzheimiers. My Dad and I had put her in a home for almost two and one half months,however you woud not believe the hidden cost's that were not given to us before Mom was placed there! Also when she was in the home my Dad started to go downhill so fast emotionally it was not like him. During this whole time I was staying at there condo. My Dad was recovering from his 2nd hip replacement. With him having that and with me with my RSD and my mom in the home,what a mess! Has anyone on this site gone thru this before? I need all your prayers and support on this one! My one and only brother live out in Utah,the rest of us live in Wisconsin. Well my phone is ringing right now,it is my Dad again. I have to run for now.

Hi Breezy, My Mom is also in the final stages of Alzheimers and Parkinson's. My Dad, who lives with me, is in and out of the hospital on a regular basis and last year my husband was diagnosed with cancer so I do understand how you are feeling. It is overwhelming and heartbreaking at times. I try to focus on the positives...I've been fortunate to have both parents live well into their eighties. That doesn't happen all that often. Also, it really is a privelege to be able to repay them in a small way for all they did for me growing up. I take one day at a time, pray for strength and courage, and try to look for the good in a difficult situation. Hope things get better for you and remember that nothing bad lasts forever. Try to take care of yourself...Jeannie
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Old 07-07-2009, 05:20 PM #4
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Heart Breezy....Here for you!

Breezy,

I have not been in your situation concerning your Mom's diagnosis of final stages of Alzheimers and Parkinson's, and your Dad missing your Mom, as well as just having hip replacement.

I will pray for you, and your family.

Currently, I am facing a stressful situation, as I fly to AZ.,on 7/9/09, and be with my sister(52 yrs. old) as she goes through pancreatic cancer surgery. I think you and I must remember that we are no good to anyone if we are "Flaring"..so, take a breath, pace yourself, and keep some time just for YOU.

I am here for you,

Dew~
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 07-07-2009, 06:45 PM #5
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Breezy 55,

I'm so sorry you have to go through all of this. Our parents are wonderful and special. The things you do for them now are so important and you will cherish the time spent with them.
Take care of yourself and take time for you so that you don't flair.
Sherrie
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Old 07-08-2009, 06:01 AM #6
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Hi I am so sorry for your family and own stresses. I can't imagine how hard this is. Do you have healthy people to support you through this? The only advice I guess I have is to make sure you reach out to the people that can help you in real time as well like family/friends that don't have health problems. Even just getting out I think for coffee with someone can help you fight through this and feel supported. Sending many better thoughts to you and your family
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Old 07-09-2009, 09:49 AM #7
Breezy55 Breezy55 is offline
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Default Trying to Cope/Need Your Support

Thanks to all for all the support so far! I love my parents so much and try to do as much as I can for them each and every single day. They do have help that comes in every a.m. for 3 hours. My Mom had rectal cancer at the age of 40 years old. So everyday someome has to do her irrigation. We are also going thru a hard time,my counsin who I am so close with and basically grew up with-her husband also is now facing death. He has pancreatic cancer too. It is so hard for me when I go over to my parents condo and see my Mom,and never knowing from one day to the next if her mind will be in the state of a two year old or a six year old.I also am a single mom. I do have three boys,however they are so busy with work and their families. Also they do not live very close to Mom and Dad.My parents just had their 60th anniverary! I am so proud to be their daughter! I also just went thru having breast cancer about six months ago. However I did beat it,it did not beat me! I was luck I found it early doing a self examanation. Well I hope that everyone is having a good day! Once again thanks so much for all that was said. Breezy55
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Old 07-09-2009, 07:10 PM #8
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Hi Breezy55,
Your mom was so young with rectal cancer. That was what my mother had. She was 46 when she passed.Like I mentioned, I learned how to give morphine shots,colon cleanses, but I treasure our time together.
I didn't know you had breast cancer.I just got my yearly letter reminding me of getting tested. It's the new digital mammogram, that is supposed to enhance the image and get earlier detection. I 'm glad you found your cancer early. My mother in law, got hers early also, 27 years ago. I'm grateful for the group here also. Just a few words mean a lot. We know this disorder, and to hears words of understanding from other rsders mean so much, we know they truly understand what it's like to have this.
Please know we are all thinking of you with compassion and love, loretta
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Old 07-10-2009, 12:51 AM #9
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prayers are not a problem,,,these painfull times are very depressing and stressfull,,i need to do what dew mentioned,,i have to learn how to find a groove to stay calm which i hope[from all your alls postings,,will calm down and surpress the flares ups,,,i get iritated when they happen,,and get annoyed fast and a short fuse and i get worse and worse and ramt on and on,,,its a wonder my wife hasnt put a speed knot on my head, that ajax wouldnt take off,,,,,bobber
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Old 07-10-2009, 11:52 PM #10
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Hi Breezy,
Just wanted to check in and say hello. You are dealing with so much, your mom and dad's health, while you yourself have RSD. I lost my Mom at 46 and am so grateful I could be with her the last few months. And my Dad at 59 and got to be with him a couple of years. I know how difficult it is, but not from the prospective of having RSD and caring for them. Are you on any antii-anxiety meds? This is one that has helped me.
But since my Dr. changed my sleeping med, he cut the anti-anxiety med in half and I have been able to decrease my vicodin also. He is doing a study for the pharmaceutical company-seroquel is the sleep aid. Ambien wasn't working and I wasn't able to go to sleep until 5-6 in the morning. I'm not in the study, he is almost done with it. He said that wasn't acceptable and played a big part in my pain, and general health.
I hope you are take some time for yourself each day. I know that's difficult, but important. Thinking of you every day. Your friend, loretta
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