By Ellen Lenox Smith.
Living life with chronic pain in conjunction with medical issues of any type, you hope for and often imagine, miracles coming your way. Your life is suddenly jolted and instead of living the life you are familiar with, you are working to advocate for yourself in ways you were, in all likelihood, not prepared to take on. The first step is to build a network willing to take on the responsibility of often complicated and challenging medical conditions. Next, you must commit to attempt to address the intensifying emotions which so often are generated by chronic conditions. Individuals afflicted with medical conditions must develop techniques to manage their emotions so that they don’t control and dominate their lives. And then, you work daily to stay on top and not let this medical condition be what defines you. It is a lot of work requiring daily efforts that those living pain free can’t begin to
truly understand. You have to live that fine line of fighting, advocating, adjusting, not giving in and eventually, learning to accept the new life you have to face. And then, if you are like me, you sometimes dream and hope that this will either just be a bad dream you wake up from or all of your efforts might just produce that miracle you had hoped for.
I have worked now for fifteen years, after finally being correctly diagnosed at the age of fifty-four, addressing medical issues living with both Ehlers Danlos and Sarcoidosis. I have coped with twenty-four surgeries, endless reactions to medications and healthy foods, having to attend weekly appointments in manual physical therapy, doctor appointments, surgeries and testing. I spent four years mostly in a wheelchair, have spent years barely able to eat good food along with not being able to metabolize most medications. Despite all this, I have always tried to hold on for a better quality of life, a cure for future generations, along with dreaming of miracles happening, while facing this deterioration in the quality of my life.
So what do I consider my miracles in life?
When I was not sure I would ever walk again that confined me to a wheelchair, I met a young women in our state who had a NEADS service dog. I decided to apply for one as I realized I could use the help in so many ways. The interview was exciting, I was approved but the wait took eight and a half months before the call came in to report they had found the right match for me. A week later, I reported for my two week training to meet and work with my new service dog. At the time, I was very weak and about to have more surgery so I really struggled to get through the training. However, as soon as Maggie, my new service dog, and I bonded, the training was successful and she came with me to stay. She immediately began changing my life for the better, but most of all, in just eight days after being home with me, she saved my life. On Thanksgiving morning, with all our four adult sons, daughter in laws and grandchildren home, I had stopped breathing in the middle of the night on the hospital bed, despite using a bipap machine. She somehow scensed this, jumped onto the bed and nudged me until the airflow was able to resume. She and I have had this relationship ever since, including monitoring my breathing when I work out in the pool. She is my first miracle to share for without her help, I would have lost my life years ago.
After a fifteen year struggle, I am now walking in stores, no longer being pushed in the wheelchair or requiring the store provided scooter. I recently began to walk down the street with my dogs and I even tried stepping carefully this summer onto the beach, with these same legs that once had me confined to a wheelchair. To me, this is one of my miracles. Along with surgeries, persistent exercising and trying to eliminate medications and food that often cause excessive internal inflammation, I have just, for the first time in fifteen years, been able to leave the wheelchair at home! Walking again was something I was not at all convinced would be part of my life. For me, this is a huge miracle.
After my first of two neck surgeries, I suddenly found my gut totally shut down. This lasted for two years. It was just as difficult to accept this, as it was losing the freedom of walking. I was truly disgusted with this new regime of weekly visits for colonics and home enimas on the other days. I truly thought the motility issue would be for the rest of my life. I felt old, dirty and not like a normal person at all and I struggled with the emotions that accompanied this issue. And then in November 2017, after our Thanksgiving company left, my husband and I picked up a cold. I couldn’t turn to regular decongestants, so I remembered a homeopathic doctor telling me about using alfalfa tablets to soak up the congestion. I started to take them, and within twenty-four hours, and two years later, I woke up and eliminated on my own. Experiencing the daily effectiveness of this natural substance, I have continued to take the six tablets of the alfalfa in the AM and again in the PM with positive results, despite not needing it for congestion anymore. This is to me a miracle for I truly thought my motility issue would be with me for the rest of my life. A year and a half ago, I had my first neck fusion and shortly after, I discovered I was not able to read without creating severe headaches so I had to accept this next loss in life. And then again this past January, I had a second neck fusion. As I attempted, during recovery, to skim the
newspaper, I started to notice that I was able to read more and more and was not getting that same negative reaction. I actually never dreamed of this miracle of reading being returned to my life, but it has happened. I am now transitioned to small print from large print books and enjoying the thrill of reading again!
As weight kept melting off me, coupled with stomach aches, on and off, decrease of energy and increased brain fog for years, I finally discovered I wasn’t able to metabolize foods properly. It was confusing and heartbreaking to try to identify which foods were the culprit. I finally was advised to have a food sensitivity test done to identify what foods to stay
away from to try in an attempt to calm the body down and regain strength with food that helped instead of hurt me. At one point, my food sensitivity testing showed little left to live on - chicken, rice and a few vegetables. It was so heartbreaking to watch others enjoy the food I wanted to also be able to enjoy. However, my miracle came with patience and diligence on following my diet, minus the culprit items. By eliminating them for at least three months, I have been able to return to eating and enjoying many foods that I had to avoid. The process paid off and I can find a variety of foods at many restaurants which I can eat safely and enjoy, thus enhancing my quality of life.
Similar to issues of not being able to metabolize many foods, I have also spent my life, since birth, reacting to medications. As my pain levels increased tremendously, I was electing to not take anything - choosing no reaction over trying more medications that failed and made things worse. Then one day, my surgeon called and asked if I would take a DNA sensitivity test to identify what it was I could metabolize for they were at a loss in the hospital as to how to help me with pain relief after much needed surgeries. Strangely, only two things showed up which I could metabolize - ketamine and cannabis. While I may never be completely pain free, these two medications have, without a doubt, rescued me from a life of severe pain and misery. These two medications have been my miracle for now I can receive pain relief in a hospital with the ketamine and when home in my legal state, I take cannabis in an oil form. Also, I can always turn to my DNA results to consult with the Genelex company to be sure if a new needed medication will be metabolized.
Another miracle for me is realizing the joy of writing, advocating and trying to share and reach out to others also attempting to cope with chronic pain. I found a new family with the US Pain Foundation, found my voice, and I am learning to express myself in writing. These involvements have helped me to discover and accept my new normal by finding a new purpose to my life.
I have introduced meaning back into my life which I did not expect could be included living a life with two incurable, painful conditions.
Just today, I tried driving again. I have not been able to drive for about thirteen years now. Many surgeries on the legs, neck fusions and years of PT and proper strengthening helped me arrive at this moment. I truly, after so many years, didn’t even dream this could happen! I am thrilled that if we have an emergency and I stay this well, that I will be able to assist my husband if he needs my help. It is a lot of pressure on a caregiver to always be the strong one to carry the other through the tough times. We presently have me strong enough to be closer to the true partner. I know the reality is that I will have to be careful with this new addition in life and will be limited on how much driving I will be able to take on.
Some of you may not consider these changes miracles, but they are for me and make me grateful and smile. What about you? Are you able to identify anything that feels like a miracle to you, while living with chronic pain? We clearly all have to work hard to get through our lives that have been so dramatically altered. I truly hope that your hard work will also someday pay off and that you, too, are able to identify some light at the end of the long tunnel you may find yourself in. It doesn’t matter how small the change might be.
Developing effective coping mechanisms along with holding onto life with hope and determination is so critical to our mental health. I will always hold dear to my heart that the fact that my adult children are observing the manner in which I handle what I have been given to cope with and I truly hope they will remember their mom as a fighter instead of
one who was stuck feeling sorry for herself. My Dad set that example in life for me as he struggled years with many forms of cancer. Yet, he still found a way to keep smiling, care about others and never gave up with seeking happiness and the positive in life, despite the many obstacles he was forced to confront.
May life be kind to you,
Ellen lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/