Do You Believe in Miracles?

Do You Believe in Miracles?

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.

Ellen Smith and friend

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/

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Authored by: Ellen Lenox Smith

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Maureen M.

Ellen, Thank you for sending ‘hope in miracles’ our way. I believe…and I know I have had many miracles in my life. Keep smiling, keep positive. 🙂

Susan L.

I definitely believe in miracles but don’t expect one for my DH (who has also endured two neck fusions)…but I’d welcome one if it came!

Jordan Peterson, the renowned professor from the University of Toronto, has a daughter with complex and disabling health issues. Through endless trial and error, she has finally discovered that she has EXTREME food sensitivities, and they seem to be at the root of her myriad of problems. She is now promoting an all- beef and salt diet that has worked wonders for her. I have not personally tried this diet, but I would if I felt crappy enough. If anyone is interested, her blog is “You Can’t Eat That!” at http://mikhailapeterson.com/

(I’m not affiliated with Mikhaila in any way.)

Joyce Brittain

I have lived with back pain since 1973. #5 back surgery was in 1991. I also have fibromyalgia and COPD. I have learned no matter how I feel, I can “fake it till you make it” until I do feel better, without making everyone around me miserable. Thank you for sharing your story.

Lynda Hillebrenner

Ellen, you are the epitome of a true ‘pain warrior.’ I enjoy all the input you give to the National Pai Report & advocacy’s efforts. Your story is an inspiration to so many of us. Thank you for sharing. There has to be a special place in Heaven for our canine family. I lost my biggest support, next to my husband, when we decided to allow our chocolate Lab, Sami, to cross the rainbow bridge. I truly feel I lost my best friend. She would sleep beside me on the Coushy dog bed we bought for her. She listened to all my sad stories and would put her head in my lap & stay by me, when I was really hurting. She was such a love. My husband does not think we should get another dog, since we are both retired & hope to travel more (when I can). I know my niece would keep our dog as we take care of hers when she travels & she always loved keeping Sami. The only times Sami left me was when my husband would pick up the truck keys to go to the farm. She loved the farm and would stay by the shed or lake while he did his thing. That was her therapy. Now coming home without a warm, friendly greeting from her is hard.
Your courage and veracity, in the face of so much pain is miracle, in and of itself. I pay that you continue to write and give our community a glimpse of your life & how you cope. Thank you.

Dee

Ellen, I just read another good story from you. You are a very good writer. I really enjoy reading anything you write. I am so glad to hear you are getting some of your old life back. It does take time to learn to live with chronic pain. Take care & I hope you will be writing another story soon.

Granny

Beautiful message for a Sunday. The blessings and miracles really are there, despite all the pain and loss. The trick is noticing them for what they are and being thankful…

Virginia

Everyday I see lots of miracles in my life, the most important one being that I have Jesus to love and lean on when things are rough and the going gets tough. He changed my life and have me the hope and the promise of a better life after this one. And He offers this to everyone who will believe.
When you have hope, then you can move on no matter what goes on in your life.
When your companion is a pet, then you know you are loved and they will sense things about your physical condition which no doctor can, and that is truly a life saver.
God bless you for the work you do, Ellen, and for being a champion for all of us out here.
May life be always good to and for you, may the Lord bless you and keep you and yours safe from all harm, and may you keep the faith you have now to continue to be the strong warrior you are.

Judie Plumley

Miracles? Oh, yes, there are miracles.
I have a lot of scar tissue, a lot of nerve damage due to tranvaginal mesh and a MRSA infection in my spine.
There was a time MRSA liquified my spine and I could not walk or do anything really.
Also, I really struggle with anxiety, which has been one of the most difficult things for me. I cry at the drop of a hat.
The medical community gives me panic attacks. I can’t even think of talking to a doctor without getting sick.
I have been using kratom, CBD, and kava to manage my symptoms. I have an orthopedic massage therapist (my son! How is that for a miracle?) I go to every week.
For the last 2 years, with the help of my husband, I was able to care for my mom, who had dementia. Those two years will always be precious to me.
I have pain, and I have to be careful. When I find there are things I cannot successfully do, it upsets me some, but I try to concentrate on what I can do.
The biggest miracle is happening now. I have joined a pain advocacy group on Facebook. There is one for each state. I hope to do something productive with my life in advocating to change laws to help benefit pain patients. I am scared to death to rejoin the outside world, but I am going to do it anyway.
Peace and love to you all.

Brian

Ellen, God bless you! I’m humbled by your struggles and your positive attitude. I’ve had chronic pain for years and yet I’ve managed to be fairly active, even when my meds were recently cut off because of the “opiate crisis”. Now in my province, British Columbia, in Canada, the College of Physicians has recently somewhat reversed their stance, after threatening doctors’ licenses for several years if they didn’t stop prescribing opiates, now they’ve been told that they must do so for legitimate patients. Go figure. And the poor patients are caught in the crossfire. I’m writing this a 4 in the morning because I can’t sleep because of pain. I can’t imagine how you’ve even survived through all you’ve been through. At 66, I’m still kicking and screaming that I should be able to do what I did at 26 and the pain just makes me more upset.

For sure, we have one thing in common. I’ve always had dogs and in 2006 we started a new generation, with a long legged Lab cross that was expected by the rescue center to become 55lbs when she grew up. She’s 95 lbs! And she’s the most kind and gentle dog I’ve ever met. My wife enrolled Kole in the Pacific Animal Therapy Society. Kole was tested extensively with a physical and then subjected to substantial taunts and experiments to test her demeanor. She passed with flying colors and for years now has been visiting hospitals to spread the love around. Though she’s not trained as a true assistance dog, she has a remarkable effect on the people she meets. We can’t take her through the hospital without total strangers stopping us to ask if we have time to bring Kole to visit their loved one. And when she comes home, she’s exhausted – like a true healer who suffers for the good she’s done for others.

Last year we got Kole a buddy, Lola, a rescue from Mexico. She looks like a 60lb Jack Russell, with the same sort of Jack Russell crazy Full-tilt energy from morning til night. Dogs are something very special in our lives. They are about the only thing that can really take my mind off pain for long.

I’m in awe of your spirit!

Jasmin

Wow, I really love this story. Thank you for sharing.