A Dream Come True

A Dream Come True

Symptoms of Ehlers-Danlos Syndrome gradually began to have a more significant impact on my capacity to function normally. The medical community had been unable to provide me with any type of diagnosis which made any sense. I was forty-two at this time when I took this picture on the beach and allowed myself to dream. It may not mean much to you to look at this photo of two dirty old sneakers standing on the sand but behind me was the handicap beach chair that I needed to use to get onto the beach safely. For me, this photo represented my vision that someday I would return to walking without the fibula and tibia and feet slipping out of position. And in that dream, I would walk again on the sand even down to the edge of the water. There, I would feel the power of emotion of accomplishment being back on the beach, a place dear to my heart.

Ellen Lenox Smith

At the age of fifty-four, I finally received the correct diagnosis and I began my personal journey to seek a new way of life. I was determined to not allow my medical condition to deprive me of life with meaningful experiences. The journey began searching on how to improve the quality of life that seemed to be slipping out of reach. Some people, even family members, would question the decisions I made in seeking treatment. When It took twenty-four surgical corrections to improve my life and perhaps even to sustain my life, decisions I chose and do not regret. After four years in a wheelchair, and over nine catatonic episodes, I am not complaining about the surgeries, recoveries, and isolation it brought on. I took risks but the decisions were mine and I chose to live with consequences whatever the outcome. My life has been altered significantly from the symptoms of EDS but altered does not mean diminished. What I see instead today, is a new and improved quality of life I wasn’t sure could ever be for me again.

  • Every day, I work on living life with EDS. I am careful to avoid both medications and food not compatible to keep inflammation down that reduces subluxations and dislocations.
  • Every day, I exercise to keep my muscles strong to not only take over their job but also that of the ligaments and tendons defected since birth since this is a collagen defect one is born with.
  • Almost every day, after years of no relief from pain, I am now better able to stay on top of my pain levels and get better quality of sleep due to a simple teaspoon of cannabis oil I take before bed.
  • Every day, I rest and sleep at night with my bi-pap machine to be sure I get the oxygen needed to get through the night
  • Every night, my service dog monitors my breathing and alerts me if for some reason my trachea, hyoid bones and/or sternum cut off the breathing.
  • Every day, I use the Cusack Protocol of supplements to replenish what is missing in the system from this condition
  • Every day, I carefully take medication three times a day to keep my blood pressure elevated enough to live life and stop passing out.
  • Every day, I try to use my mind and keep my spirits up and not get stuck on “why me” and instead try to enjoy what I do have.
  • Every day, I try to pass information forward that might help others on this difficult journey.
  • Every day, I wake up and take a quiet moment to run through my mind all that I am thankful for to attempt to stay as positive as possible.

Every day is work but somehow, I have been rewarded with some positive changes I never expected. That photo at the top has started to come true. Twice this summer, I was able to walk on my own, gingerly, onto the sand and even down to the edge of the water. It is a gift I have always dreamed about for the past tough fourteen years. To transition from a wheelchair, to walking on hard surfaces, beginning to walk up and downstairs again to now adding walking briefly on the sand, is a huge transition that I am so grateful for.

What I have learned from this is that we need to hold on and try to not give up for we don’t know what tomorrow may bring. No one could have convinced me that after fourteen years of surgeries, isolation, loss of friends, judgment by others, even in the medical field, telling me I look fine due to their lack of understanding, that life could improve as it has. I know with two incurable conditions that things can again change, but for now, I will bask in the joy of seeing this old photo and knowing it has happened – I can walk on the sand again!

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.

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Authored by: Ellen Lenox Smith

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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Stephen

The Slacker Family should fight back against all 50 states. Their company made the very best long acting pain med I ever took. Chronic pain patients do not abuse their pain meds as they know if they take more of their meds then they want what they need in coming days. The drug problem in America comes from the Drug Cartel from Mexico and people getting on dark web ordering any kind of prescription pain med or any drug they want. People who order pain meds from China, plus China sends them into America in shipping containers – China will not stop this as they will do anything to bring America down and loves that so many stupid people will turn into junkies as it cost this country more money that could be spent making this country stronger. Drug Cartel make drugs that look just like pain meds that real drug companies make here or any country. People who are dying, over dosing are illegal drugs that come from China and Mexico plus other countries to this and smuggled into our country. America had a some docs who were running a pill mills for money plus tell where to get their prescription filled at drug stores. Thee should not even be guide lines put on pain meds at all, pain has no limits and primary docs should be able to write what a patient needs as they know their patient better than any doc. I’m as angry as this Marine is. Junkies should be punished and drug dealer – not us Chronic pain patients. This reformulated oxycontin plus the generic does not come close to controlling pain at all. Ever since 2016 when our government changed laws about main doc not able to give us what we need for pain, no xannax like drug if on pain meds and now guide lines, pain has no guide line. DEA stop drugs coming in, stop dealers and that’s it. Our government has such stupid people and their criminals, laws for them and laws for citizen. Let all doctors do their job and get the bad ones instead of punishing real pain patients. Congress is a bunch of asinine criminals and stupid.

Something else if you remember going to pain management you had to have MRIs to prove that you have an issue if it wasn’t visible like being in a wheelchair or missing limb or deformity. Now pain management pushes spine stimulators, forced injections BC if you don’t get the injections you’re kicked out. And now focus on physical therapy over and over, not going to turn you into an athlete what a joke! Those creams that were Voltaren gel, unregulated supplements forced to buy at pain management, Chiropractic treatments even if it made your body hurt worse forced at pain management, forced spine surgeries and other types of surgery’s. Now pain management only wants the ignorant, best insurance, and the worst of the worst shape people like the had multiple back surgeries. Now pain management is injections or surgery only non opiates. No wonder they’re closing. We all kn that’s not effective enough. Govt building the wall, El Chapo tunnel so stripping people of opiate treatment is not going to stop illegal drugs coming in & only going to make people turn to illegal drugs for relief. They’re accomplishing nothing other than killing more innocent people.

The Slacker family that made oxycodin is being sued by all 50 states. I have a medical book thats 100 yrs old & it says opiates r addictive. I have a medical book that 10th edition 2009 Bates guide to physical examination and history taking by Lynn S. Bickey it’s for Physicians & it states in there that opiates R addictive. I have a Physicians Desk Reference 46 Edition that states that opiates are addictive. I have a book the cardiologist compendum of drug therapy it has in there opiates are addictive. Why doesn’t the Slackers family look at old medical books to prove that they did not lie to Physicians that Physicians already knew opiates R addictive. People in chronic pain are dependent not addicted to opiates it’s the only way to lower the pain threshold to survive not to get high. No one can control how anything is misused including glue & aerosol cans. People died from inhaling aerosol / glue. Why is the focus on this family is it BC they’re rich? Now lawyers found out they have more money so they want to go after more money. The misuse of Oxycontin is exactly that someone chose to misuse it & mix it with something else. They have 2,000 complaints there are over a hundred million chronic pain people that can outnumber those deaths. I think we need to be behind the Slacker family in order to get our issues met. Why is it the people that misuse r more important than the people who are truly suffering? Yes they died but they made mistakes.Its their choice not ours, why do we pay by suffering. If they died from overeating would food companies be sued & the rest of us have to starve?

James McCay

I once had a wonderful life, a life I thought was wonderful anyway. It ended at age 34, I’m 52 now.
I lived in Pt. St. Lucie, FL from 1990-1994, worked in the areas most prestigious hospital (12-hour shifts) & had GREAT co-workers. We could switch days off so we could have four days off in a row whenever we wanted. Vacations? Not needed! So while my wife worked, I went snorkeling 3-4 days in a row, in the clearest light blue water!

I usually went to “Bathtub Beach” aka “Bathtub Reef” where HUGE heads of worm coral (bigger than wrecking balls) started the reef that went to Key West. I loved snorkeling in the shallows by the worm coral half exposed during low tide and created the large “bathtub” like area that got up to 95-degrees!

All sorts of tropical baby fish would use this area and it’s tide pools to grow large enough so they could swim out to the real reef, which was a 1/2 mile from shore. Most saltwater tropical fish go through two phases: junior & adult stages. Most juniors were spectacularly colored. One junior species (likely a Damsel) was a brilliant blue with a dash of red & yellow and only 1/4 inch long. They were so spectacularly colored; you couldn’t miss them!

They’d often get stuck in small tidepools on top of the exposed worm coral. Back then (1990-1992) we were allowed to walk lightly on the exposed worm coral with fins on our feet only (as our bare feet would push too deep in the coral). Then I’d lie on my stomach, put my head in the water & just watch all the wildlife “doing their thing”. The little fish would hide in crevasses from the beautifully banded cleaner shrimp, blood shrimp, and little crabs. It was like looking at a whole world inside an area no bigger than a gallon bucket bottom.

Then I graduated to snorkeling with BIG Great Barracudas! They’d never bother me, nor I them. There was nothing like watching them catch lunch w/a 30 MPH lunge!

Stuck in NYC, memories are my life now… but priceless.

Wendy Paley

I totally agree with Robert. You truly are an inspirational person and I enjoy reading your posts very much. I also wonder, like Robert, why good friends forget about us and stop coming by or calling. I guess They feel uncomfortable and do not know what to say to us even though we do not expect them to say anything. We just enjoy having some company for a while or chatting on the phone. Or maybe it makes people feel vulnerable that something bad healthwise could happen to them too.
Ellen, I love the beach like you do and I am so happy to read that you got to experience walking in the sand down to the water. May you get to enjoy this many more times in the future.

Those of us who face challenges physically sometimes forget to count the blessings we do have. Every day is a blessing of some sort.

Debbie

Good for you! My daughter and granddaughter have EDS. We first noticed the problem as a toddler when she’d be playing outside and all of a sudden, her arm would hang limp by her side. This went on for years until she was in the 6th grade, when a doctor at the ER diagnosed EDS (they couldn’t keep her shoulder in socket). He sent us to the physician who wrote the medical textbook section on EDS and luckily lived near us. Then we had a diagnosis and began various treatments.

She just turned 40. She’s worked hard on her body, and is in good physical shape. But she does still have shoulder, hip and knee problems severely. Her spine is a mess. However exercise has helped keep her in her best physical shape possible, and has greatly improved her ability to get from being in bed to now working and living a much better life.

I am SO proud of her! Even though she struggles with insanely high BP, severe chronic pancreatitis now too, she never gives up.

I am wishing you well, and continued positivity. Keep up the good fight! I know some days aren’t the best (to say the least), still appreciate them for simply being another day you get to see the sunlight.

I love your attitude and willingness to share your story. Thank you!

Robert Mirasola

You are an incredibly inspirational person. You force me to stop feeling sorry about my own illness (Crohn’s Disease) – because wonderful people like you suffer challenges much greater than my own.
And why do people forget us and stop coming by and calling? All I can say is I hope that does not happen to them if they ever face a time of suffering. Emotional support is so important to those of us with health challenges. Whenever it is lacking in my life, I go out of my way to provide to someone else.
Bless you.