Living Life With RSD/CRPS Friday, Sep 19 2008 

I am trying to control what I can not control. That is total body pain due to rsd/crps.  My body has rsd/crps on every appendage, torso, neck, and head.  I am writing this blog, to reach those who need some one to talk to.  For the family members that need another point of view, information, or help.  I will always write back or do my best to give you personal testimony of my experiences. I have been living with this dreadful disease for 7ys.  I have survived more misfortune, suffering, and pain due to my health than what most people experience in a life time. For the doctors that read my blog and need advice for a patient whom is suffering from rsd / crps there is only one thing I want to say right now. STOP telling us to do cold to hot water for what ever extremity might need to be desensitized. It is the wrong way to go about it. Instead, find that one thing that might be tolerable mine was a heating pad and go from room air to heating pad do not over do it and always remember less than best, is the best policy.

Robin

Coming back Monday, Aug 2 2010 

I went from doing okay, to going down hill fast. I did not take medicine like I should have  for almost a year. WOW, have I payed for that mistake.  My body went into pain over load and it made me sick to my stomach. I got to weighing 84 pounds and felling like shit in a matter of month’s. Now I am fighting back . Also am back with a doctor and slowly getting my strength back. You can’t fix stupid!  I know now never to do that again no matter how much I hate taking medication.

Burning Truth Sunday, May 16 2010 

The hard cold facts about this disease is that were going to suffer and we all die. It is just how you wish to go out. Suffering to what extent and for how long is only between you and your higher power. I have met my maker twice with this disease and been paddled back. I am now at a place in life and okay for my god to take me at any time. It’s not that I want to do die, I have just come to peace with it. I wake up every morning praying to let me be the best mother, wife, daughter, sister, and friend. I push myself to ride the motorcycle, dance, do yoga, and always be there for my children. I try to carry a loving attitude to everyone that shall cross my path.  I always smile, it will relax the people around you. I push through my days.  Praying all day long and making sure I tell everyone around me I love them, hug them, and kiss them. I’ve been told I wear a poker face, it’s to hide what really going on with me.  To the outside world nothing is wrong with me at first glance.  Get close enough and I am trembling with pain. The muscle spasm and electrical pain are unconscionable. Bones that feel like they have broken and popped through my skin.  Some days it’s too much but looking into my children’s faces some how make it all worth the torture that I am ravished with, with having the full body RSD type II.   

A week ago, I thought I was having a heart attack.  No matter, the doctor did the EKG and then said it’s just pain.  The doctor did not want to help me but later gave in. Only with help of  my medical advocate. I do highly suggest making sure you have someone who knows the medical field to help you with this fight. I was sent home with nothing but smallest dose of another drug that doesn’t help that well. Don’t forget your doctor is GOD when you are still earth-bound. I have had the humbling experience not to consider them GOD.  Now I am stuck in a limbo of  not having a  pain doctor or should I call it “Purgatory“. Please don’t make this mistake.  I am on the lowest pain medication right now fighting my way back into being on more drugs. I have made the mistake of pulling myself off all medication and just trying to fight on my own. It has become too much to handle and my quality of life went down greatly. I would rather be on medication that destroys my body than deal with this amount of pain. I live now in a state that the doctors are very closely monitored.  I have thought about moving back to Colorado but my children and husband are very happy here. I have also grown to love this state but not the Doctors. I believe that through all my research and being the lab rat that ketamine is the answer until they can find the cure. Love, Smile, and just be grateful for what you have no matter how hard it gets. Make your peace and just try to put on foot in front of the other..

Waiting Game Monday, Jan 4 2010 

I have not wrote in so long. I have been off my medication for about eight months. The RSD has just totally taken me over. I still have some good days but they are far and few between. I am currently trying to get into a new pain clinic but due to insurance it has been hard. Now I am playing the waiting game.

Biking Across Country Again W/RSD/CRPS Monday, Jul 20 2009 

Last year, my husband and I went to Sturgis, South Dakota on our motorcycle Starla. We went 2,500 miles round trip. I would have never in my wildest dreams thought this would be possible with this debilitating disease. Some how I mustard up the strength and set across country. It was accelerating. My adrenaline glands were pumping and my body was in high gear most of the way. I did have pains along the way… OH YES!  My focus while riding  was what going to be around the next turn. It was breathe taking. This year, I am packing up to do it again. When I ride I never forget about my rsd/crps I can’t. It is constant and relentless. I always say my prayers and remember everyone who is still suffering from rsd/crps before my rides. Have a wonderful summer because this is the only time with the hot weather my rsd/crps is a little more tolerable.

Struggling with day to day life With Full Body RSD Saturday, Mar 14 2009 

This past week I have been struggling with my pain. The weather got really nasty and dropped 40 degrees. I do so much better when its warm to hot and the temperature does not fluctuate. I am doing my tricks for my trade. My trade is surviving RSD. So this week, I really concentrated on meditation, yoga, hot baths. Being a mother and a wife, I had so much to accomplish this week that I  really stressed myself out. I know that I am trying to live as normal of a life with the RSD. The RSD always seems to catch up and then bites me in my butt. Now I am paying the price for all that I did. But right now I am unable to sit back give myself that much needed pity party and rest. I need to to get my house in order and cleaned for my family that’s coming into town. So with  faith and a prayers I will push through all this pain, stress, and feeling overwhelmed and just get it done.

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