Has it really been 3 years since my last blog post? I sincerely apologize! So much has been going on and so much has changed and yet my RSD/CRPS stays in play. This year I turned 40 years old. This month my RSD/CRPS has turned 23 years long. At this moment I am sitting in my chair, my leg propped up on my ottoman with a pillow under the knee to help support during this summer time flare up.
I have been thinking about my long lost blog for the past few months. Wondering if I should resurrect it and if so what direction I wanted to take it in. Let’s face it. I got tired about blogging about how hard the struggle is to live a life with chronic pain without the recognition of the pain and trying to not let it over take my life. Also blogging about my kids may be a joy for me but as they get older it may be a source of embarrassment for them. What direction do I want to take my blog into?
RSD/CRPS will always be a part of my life. That’s a fact proven by 23 years. It is not my whole life. I am a wife and a mother. I love reading and writing. I am addicted to watching tv and movies. I love fashion but I have a limited budget. I am always cooking. I have a beginners green thumb. I am a moderate healthy eater. Why not blog about all these aspects of my life? We are all unique with our personal struggles but we cannot let them stop us from living our lives, we just change how we live to accommodate these struggles.
That is my plan. To get it all started I am going to blog about our family vacation, destination Uruguay! I plan on giving you a day by day review of our trip beginning with the planning and organization of the trip, the 14 hour flight, the hotel Vivaldi, the activities and the food! So much food!
I hope this sounds like something you are interested in! This is my new take on Life with RSD!
Tuesday, August 7, 2018
Friday, July 31, 2015
20 years and going strong
Wow! I cannot believe it has been twenty years, two full decades, that I have been in this fight against RSD. Do we say Happy Anniversay? It doesn't seem fitting to celebrate this milestone, does it? Oh but it does! In those first few years I was a simple survivor grieving for the life I lost. Slowly I learned how to fight back and become the warrior I am today. I no longer grieve the life that was or could have been because, let's face it, living with this disease has been more than half my life. I don't know if I will ever go into a full remission but I won't give up. I have come too far and have lived through too much!
Twenty years is a long time. Through these two decades I have had 100 epidural blocks, with 2 week long catheterizations, a spinal cord stimulator implant at age 21 with 6 revisions, and I have been on numerous medications.
During the past twenty years I graduated high school and despite the fact that I had to medically withdrawal from college I was able to work after my spinal cord stimulator surgery. I met a wonderful man and together we built a beautiful family. 7 years ago I had to stop working because of my health and I was approved for Social Security Disability. I also had to stop driving at the same time, I still have my license, this was a decision I made based on safety.
In the last twenty years I have witnessed a huge change in the medical industry. Back when I was first diagnosed you couldn't find any information about Reflex Sympathetic Dystrophy which made it difficult to be taken seriously about the level of pain I was in as people challenged the legitimacy of my health disorder! The medical community was in the early learning stages, a doctor confided to me that RSD was a two line paragraph in his education and that the only way to learn was by finding a good doctor who was treating patients. Normally this wouldn't inspire confidence but we were in a teaching hospital and I was basically a kid!!! Even my neuro stimulator has been receiving a constant evolution. I feel like each surgery they have something new to introduce to me! Well, actually I am always researching to stay on top of all the latest information and advances being made. After all it was only a year or two after my diagnosis that they made the name change to Complex Regional Pain Disorder and then shortly after that they named a type one and type two, all of this because it better defines the disorder for the medical community. Remember the first name was not RSD but Causalgia.
Twenty years, two decades, is a long time to fight a major health issue. I plan to keep up the fight for many more decades praying that one day we will find a cure!
Twenty years is a long time. Through these two decades I have had 100 epidural blocks, with 2 week long catheterizations, a spinal cord stimulator implant at age 21 with 6 revisions, and I have been on numerous medications.
During the past twenty years I graduated high school and despite the fact that I had to medically withdrawal from college I was able to work after my spinal cord stimulator surgery. I met a wonderful man and together we built a beautiful family. 7 years ago I had to stop working because of my health and I was approved for Social Security Disability. I also had to stop driving at the same time, I still have my license, this was a decision I made based on safety.
In the last twenty years I have witnessed a huge change in the medical industry. Back when I was first diagnosed you couldn't find any information about Reflex Sympathetic Dystrophy which made it difficult to be taken seriously about the level of pain I was in as people challenged the legitimacy of my health disorder! The medical community was in the early learning stages, a doctor confided to me that RSD was a two line paragraph in his education and that the only way to learn was by finding a good doctor who was treating patients. Normally this wouldn't inspire confidence but we were in a teaching hospital and I was basically a kid!!! Even my neuro stimulator has been receiving a constant evolution. I feel like each surgery they have something new to introduce to me! Well, actually I am always researching to stay on top of all the latest information and advances being made. After all it was only a year or two after my diagnosis that they made the name change to Complex Regional Pain Disorder and then shortly after that they named a type one and type two, all of this because it better defines the disorder for the medical community. Remember the first name was not RSD but Causalgia.
Twenty years, two decades, is a long time to fight a major health issue. I plan to keep up the fight for many more decades praying that one day we will find a cure!
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