Written by Maria Martinez for the RSDSA blog.
I am 50 years old and have been married 30 years. I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days.
As a wife and mother, I could not be happier about their choice of spouses.
I adore my husband and had so many plans for this time in my life.
All those plans were waylaid in 2008 after a cervical mitre. The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my left arm was crushed. He would go in and do a “roto rooter” job and create a space for this nerve bundle.
The surgery was a complete success. I regained full function of my left arm which often would just dangle to my side before surgery.
There was a deep ache and pang that just wouldn’t go away in that left arm and into my hand. He sent me to a pain management (pm) doctor who poo pooed all my concerns by telling me that I was getting close to 40 and that there was arthritis in my hands.
As I had never ever dealt with a chronic issue, I did not know what to say or ask. I didn’t have any response to her telling me that I couldn’t be in that much pain except to reiterate that I have a super high pain tolerance. I had passed a 5mm kidney stone without feeling it until it was in the bladder. The urologist told me to keep an eye on my body because my body didn’t respond to pain in a normal way.
I worked for two years after surgery with this pain. I was sent for imaging, to physical therapy, and a myriad of interventions that didn’t affect change.
In February of 2010, I was at work when a wave of hot lava like pain swept up from the incision site into my brain. I was instantaneously hysterical in pain. The office staff was going to call an ambulance, but my husband was by happenstance in the area and my pm doctor saw me immediately.
Now she agreed something was horribly wrong and called the neurosurgeon who had done my surgery two years before. His office set an appointment for that same week. By the time I saw him just a few days later my right arm was on fire in worse pain than my left.
I am an inordinately positive person, but I saw by the look in his eyes something was very wrong.
He sent me to a neurologist for tests and for an updated MRI.
He then sent me to a colleague of his that had worked for one of the foremost military hospitals in the United States located in San Antonio. His expertise with wounded warriors who return with or develop CRPS is top notch. This gentleman had worked as the chief of neurosurgery at this facility.
He leaned his head against the wall and told me two things that would propel me to where I am today. They were “you have to find new normal” and “do your research because you will run into doctors that have no idea about this disease.”
Without all the details and within nine months of seeing him, CRPS had affected both of my legs worse than my arms. I could barely walk within a year of my diagnosis.
The Light Side of Pain
All the interventions to get me where I am today will be shared as I share The Light Side of Pain.
There is hope, there is life and I hope you will be open to some of my discoveries over these last 10 years.
When writing my thoughts, I define Spirit as the core of a person/the essence of who I am and my core beliefs. Physical light is defined as an electric field tied up with a magnetic field flying through space.
The very nature of Light is to dispel darkness.
It is not hard to listen to Spirit when life is great. As a matter of fact, we often just live our truths without giving it much thought.
Tenacious, outgoing, benevolent, caring, sharing, proactive in education, fitness and personal goals.
I know how strong my spirit is. It took me through a very abusive childhood. There was a spark that always compelled me to believe that something great would happen.
I was able to depend on tenacity to move 2,000 miles from home when I was 20 years old from the Houston area to Denver. I got a job as a nanny from an ad in a newspaper. I moved in with a family I did not know to raise two young children and a brand-new puppy.
There was a fearlessness believing this was a new beginning.
That same Spirit led me to believe I could be a great wife and mother. I was a wife at 21 and a mother to both of my kids at 25.
What abuse couldn’t take from me CRPS began to. It started wearing away at my core.
On April 1st, 2010 when I received my diagnosis, I came home and put the lyrics from “Across the Universe” by The Beatles as a banner on my computer. The mantra, “Nothing’s gonna change my world,” filled my head day and night.
I wasn’t even prepared for how CRPS was going to change my life. My Spirit was already clamoring for a voice in the experience.
Between 2012 and 2015, I was bedridden and I was incapable of navigating my everyday life. I couldn’t cook, clean, and some days bathe my own body.
My daughter gave up a scholarship at an out-of-state college to live with us for eight years. Karina has crawled into the shower with me and she’s shaved my legs. That made me question all my whys.
My longest stretch of being bedridden was three solid months at the end of 2015. I don’t know how but my Spirit kept a spark and a hope.
I want to share how to fuel a spark to your Spirit. I know we all have one as we are here today despite what it has or will cost us physically.
- Explore your physical core and and ask Who am I?
- What do I love?
- What have I overcome?
- How do I make this work for me?
- Muse, meditate, listen to great music, light candles, pray, read inspirational books, watch documentaries. Find ways to define your Spirit.
- Feed your Spirit and It will guide you.
- Reignite the Light and this leads us to the Mind part of this process….
- Mind-the ability for rational thought
- Light-as to enlightennot darkto become aware
I must say that just a few months into my diagnosis rational thought was waning. Nobody tells us how to live with a disease.
The CRPS Hole
Dr. Wayne Dyer is a favorite speaker. He shares a story in his presentations about a person walking down the street and they fall into a hole. They continue the same road every day and fall into the same hole until someone rescues them and they learn a new path which doesn’t have that hole.
The CRPS story goes like this. I fall into the same hole because I do not have a map.
I had suffered with CRPS for two years before I was diagnosed. I was completely lost looking up CRPS in the search engine. It was overwhelming; the pain, body changes, career-ending symptoms and nobody to tell me how to live this. By 2012, I was bedridden more than I was not. I would go out one day and be in bed for two weeks.
My longest stretch of living like this was the end of 2015. I was bedridden for three months.
My mind had this dialogue that I was dying. Thank goodness for an excellent primary care physician. At this time, I was seeing him every three months and in between if needed. His protocol was to do bloodwork a week before seeing me.
Except for my blood pressure being high due to pain, I was healthy. This dialogue in my brain was pain, fear and depression coming together to produce catastrophic thinking.
He periodically has me fill out mental wellness checks. In 2014, he didn’t like what he saw and what my family was telling him. He gave me a consult to see a therapist. I chose a Cognitive Behavioral Therapist who in just a few sessions set my thinking into a different mode.
My new thinking was, and to this day is, My Life Needs a Captain!
Internal Power
Before CRPS I was a whole human with all parts of my psyche integrated.
I now am two parts.
I, my rational self, strong minded self, am in control of a very cranky, bratty body that daily has no desire to do anything.
I take a very conscious evaluation every day of what the true situation is pain wise, weather, what my activity level was previously, how close I am to treatments, what I have used in my CRPS toolbox, what I haven’t tried yet and I make those decisions for that day. Every day is completely different.
I’m sure you have heard the true story of ship and the lighthouse.
The ship saw a blip on their radar and radioed, “Move, I am a military warship.”
The reply was, “You move, I cannot!”
After the blustering captain of the ship continued his stance, the other finally gives him all the information.
“I am a Lighthouse! You must adjust your course!”
Light-as to enlighten, not dark, to become aware.
Each of us will have a different map for this disease. What works for one will not work for another. What I can do is take points of Light from many sources and map my course.
I take that to my executive self, plot a course and I become the navigator for CRPS, not CRPS for my life.
I am the LIGHTHOUSE!
I just refuse to stop enjoying my life
Remember, the body is the vehicle I live in and a Light is a burden that is not heavy, easier to carry than a heavy load.
I saved the body for last because it is still the last to get the memo that I AM GOING TO LIVE DESPITE CRPS.
The neurosurgeon who diagnosed me told me to research this disease as I would sit in front of doctors who knew nothing about this disease. I haven’t been to an ER with CRPS symptoms since the Fall of 2014. Every time I went to the ER my daughter and husband would comment on how computer monitors were lit up with CRPS information because the doctor and nurses were getting a quick overview of a disease they had never heard of.
In doing research I am not unaware of the ravages of this disease. I think it is a horrible disease with complications that are life altering. Knowing this, I just refuse to stop enjoying my life.
I’ve experienced every stage of grief about what my life before CRPS was and what my life after CRPS is now.
I’ve experienced every symptom as CRPS moved from the nerves in my neck into my left arm, mirrored into my right arm, into my legs, my intestines, stomach, bladder and esophagus. CRPS has also affected every bone and piece of cartilage in my skeleton.
So, how in the world do we come to terms with this?
First it is extremely important to build a strong medical team. My PCP, Dr. David Guerrero is responsible for my health. As of my last visit all my numbers are in the healthy range except my cholesterol. We have a plan in place for my next visit in August. My health has improved so much that as of this year, I now see him twice a year instead of three or four times.
I turned 50 in December. He is taking my age and CRPS into account when he looks at my file. He also has a pulse on what my other doctors are saying.
My gastroenterologist has taken care of my gastric issues since 2013. When I first started seeing him I took in an article about the systemic complications of CRPS and asked him to make it a part of my permanent record. I had highlighted the portion that dealt with my gastric issues. Dr. Alfredo Espinoza had been invaluable in keeping my digestive working so that these issues have not gotten worse.
My final doctor is my pain management doctor. Dr. Ricardo Alvarado has been so amazing at thinking outside the box for his patients. I have at least 15 friends that I know personally who see Dr. A as he is known to us. He has been invaluable at getting all of us into a healthier way of thinking about CRPS and the options we have for pain management. He and his office fought to get Ketamine infusions paid for when I had been denied for four years. His comment of, “Let us fight for you,” has never left me.
An excellent TEAM for this bad, cranky body is a must.
Despite how CRPS has ravaged this body, I am healthy, I have changed my diet to alleviate pain, I am now able to exercise, and I clean my own house.
I have friends who see neurologists, psychologists, chiropractors, pulmonologists, immunologists and every other specialty there is to manage their CRPS.
If you’re in the same boat, here are a few practical things for you:
- Keep an ongoing dialogue about the changes CRPS brings and address them accordingly. Ask if you do not know who to see for these.
- Have a handy toolbox and don’t forget the importance of laughter
- Have an excellent support system
- Be kind to yourself
- Self-care is not selfish
- Manage emotional energy
- Decide how you want to use your physical energy
- Eat healthy
- Exercise moderately as led by your physicians
- Find your passions and find ways to live those
Kirsten is a woman in our group who is also a Marine. We’ve all heard of “Semper Fidelis” which mean Always Faithful. Semper Gumby is a term used by the Marines as a tongue in cheek reference because their plans and orders can and do change at any given moment and indicates, “Always Flexible.”
Semper Gumby is a point of Light on our map.
I have CRPS friends who have gone back into their careers after long absences of working, I have friends who have continued to work, I have seen women start a family, I have friends who skydive, write books, a friend just returned from Hungary and Romania after over a week of missions work.
I want to go back to a key point in the first definition of Light.
A strong, supportive, proactive group of peers is needed to do this successfully
I started a public Facebook Page because I could not find anything with San Antonio and CRPS in the same sentence when I started my journey. I started a page just for information.
A group is offered when a public page is made. I made it, but I wasn’t interested in a group. In 2010, without me adding anyone or making any posts, people started asking questions and somehow, they thought I had an insight. I did more research to try to help in any way I could.
This has led to the best friendships, partnerships, buddies, problem solvers, I’ve ever known.
Alexia Swanepoel and I administrate this beautiful group of people in our Facebook Group.
Together a collective intelligence of educated, proactive, positive people are LIVING with CRPS. I know there is a way of living with this disease because I see it every single day in the posts that are shared.
There is so much laughter, love and life to live.
There is a place of Light living with CRPS!
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