How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

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 Pain News Network.

13 Tips for Living with Gastroparesis

By Ellen Lenox Smith, Columnist

Few people understand what it’s like to live with gastroparesis – a digestive disorder that slows or stops the movement of food from the stomach to the intestine. Not being able to digest food and eliminate waste properly causes abdominal pain and bloating.

Gastroparesis can develop when the vagus nerve is damaged by an injury or illness and the stomach muscles stop working properly. In my case, it was triggered by Ehlers-Danlos syndrome.

The most extreme cases of gastroparesis lead to severe nausea, vomiting, and dehydration, when urgent care may be required at a medical facility so IV fluids can be given.

You can’t allow partially digested food to ferment and become toxic in your body. There are cases where death has resulted from not being treated.

I have been searching for answers for two years now. I had times when things seemed semi-normal. But for the past three months, I have been having on and off luck with elimination and wanted to share some tips I’ve learned that may help if you also suffer from gastroparesis.

1. Changing eating habits can sometimes help control the severity of gastroparesis symptoms. It is suggested to eat six small meals a day instead of three large ones. Less food makes it easier for the stomach to empty.

2. Chew food slowly and thoroughly while drinking at least 8-ounces of non-carbonated, sugar-free, caffeine-free fluid with each meal.

3. Walking or sitting for 2 hours after a meal -- instead of lying down -- may assist with gastric emptying.

4. Avoid eating high-fat foods, because fat slows digestion. Red meat, pork and fowl should be ground.

5. Avoid raw vegetables and fruits. They are more difficult to digest and the undigested parts may remain in the stomach too long. Oranges and broccoli, in particular, contain fibrous parts that do not digest well. Acceptable vegetables might include avocado, summer squash, zucchini, or mashed pumpkin.

6. A person with severe symptoms may have to turn to liquid or puréed food, which empty more quickly from the stomach. Puréed fresh or cooked fruits and vegetables can be incorporated into shakes and soups.

7. Some doctors recommend a gluten free diet. Even mild gluten intolerance can result in the development of thyroid imbalance, which could worsen gastroparesis.

8. Fermented food rich in lacto-fermented foods such as sauerkraut, kimchi, black garlic, and kefir can also improve digestion. Bone broth is very nutritious and healing for your gut, as it contains calcium, magnesium, phosphorus, sodium, potassium, glucosamine, chondroitin, and glycine to ease digestion and soothe inflammation.

9. Believe it or not, chewing gum can make a big difference too. The act of chewing produces saliva, which not only contains digestive enzymes but also stimulates muscular activity in the stomach and relaxes the pylorus, the lower part of the stomach. Chewing gum for at least 1 hour after meals is a very effective treatment of gastroparesis.

10.  High-fiber laxatives such as Metamucil that contain psyllium should be avoided.

11.  You might want to considering giving acupuncture a try. Needles are believed to restore healthy immune and neurological function while removing blocks in your life-force energy called ‘chi’.

12.  Colonics is also something to consider and what I have had to turn to weekly to eliminate waste. A colonic is the infusion of water into the rectum to cleanse and flush out the colon.

13.  There are medications that can help. I had amazing and quick results using metoclopramide, but unfortunately ended up reacting to it and had to stop. That was heartbreaking!

Living with gastroparesis is not easy and most people connected to you have no idea the sensations it is creating in your body. Remember that eliminating is a natural and necessary process. You must rid your body of those toxins and not allow them to ferment inside you.

I hope that one or more of these suggestions will help to improve the quality of your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website. 

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 Pain News Network.

CNN Gets It Wrong About Pain Patients

By Sarah Daniels, Guest Columnist

You may have seen last night’s CNN town hall meeting on “Prescription Addiction: Made in the USA.”

I couldn’t believe it when Dr. Drew Pinsky said that real compliant pain patients are “a very tiny minority” of prescription opioid users.

I’m so sick of being grouped in with addicts! Because of all the new CDC regulations, I had to go weeks without my medication after being on high doses of opiates for a long time.

No one would give me my medication. Every pharmacy I went to said they were out. One pharmacy had the medication and was getting ready to fill it when the head pharmacist came over and told me unfortunately they wouldn't be able to give me the script. When I asked why she said they didn’t have it. I explained I was told they did and it was being filled. She said it wasn’t enough.

I asked if my doctor could write a different script for a temporary amount, would they be able to fill it and she just handed it back to me saying, "Like I said, I’m sorry, I can’t help you."

Then I went to a hospital pharmacy that did have the medication and they actually told me they needed to save it for patients who had short-term pain like surgeries for broken ankles. When I asked how someone's broken ankle pain was more important than my chronic pain from my genetic illness they asked me to quiet down and leave. If I didn't they would have to call security.

I was being polite and respectful, because I know as a pain patient you have to be the best advocate you can be, especially with all the stigma attached to opiates. I was also being quiet because I am never loud when discussing my pain meds, as you never know who is listening.

I never fight or argue or really raise my voice with anyone. I am a happy person despite my illness. I am grateful and thankful for each day I wake up and am able to spend with the people I love.

I did not appreciate someone making me out to be a completely different person than I am. It was like they actually felt threatened by me. Give me a break. I was in a wheelchair.

Now I’m not able to find the medication. My doctor wrote me a script for the medication because we have both decided it is the only thing and best thing for me to be on. It gets me out of bed and still, I can’t get it.

Now I am forced to go to a new pain clinic with new meds, where they're making me stop medical marijuana, which is the only thing keeping me from a feeding tube. They are making me come in for a visit once a week and each week I have to get drug tested and get labs drawn which costs $16. The visit itself costs $35.

SARAH DANIELS

SARAH DANIELS

They also want me to see a pain psychologist twice a week (who I already saw with my previous pain specialist and was cleared by). God only knows what that costs.

I’m on disability. It barely covers my insurance and yet I have to do all of these things to be compliant. I have to come up with the money for all of these appointments and procedures, find someone who will be able to drive me, as I am disabled and cannot do so on my own, and also be  well enough to even leave my house to make these appointments, just so that I am considered compliant. So that I can take a medication that I’m not sure will even work.

I am just disgusted by what is going on. As pain patients we are left in the dust. Nobody stands up for us. We try to stand up for ourselves, we are pretty strong, but we need bigger louder forces on our side.

Sarah Daniels lives in the Detroit, Michigan area. She suffers from Ehlers Danlos syndrome and gastroparesis. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Spreading Awareness and Hoping for a Cure

By Sarah Daniels, Guest Columnist

When I was 25 I decided to reclaim my life. I left an abusive relationship and worked very hard on my physical and mental health. With diet and exercise, I went from 240 pounds to 180 pounds in about 5 months.

I thought losing weight would make me feel better, but as soon as I dropped weight I began to have debilitating pain. It got so bad I could no longer walk. Not only was it painful, I literally couldn’t move my leg. There were days I couldn’t get out of bed.

Most of the pain was in my hips; radiating down my legs into my feet. My doctor had no idea what to make of this so she sent me to a specialist. I waited months for the referral. Finally, my prayers would be answered. The specialist would be able to help me!

Instead they laughed and told me I should join the circus because I was so flexible. I am double jointed in every part of my body. I should have known then that this was just the beginning and it was going to be a long ride.

Four doctors, two physical therapists, and $8,000 worth of useless therapies later, I finally found a specialist who diagnosed me with Congenital Hip Dysplasia. They told me I had a torn labrum, severe tendonitis of the hip, and a shallow socket that permitted my hips to dislocate with even the slightest movement. In order to “fix” me they would do a surgery called a peri-acetabular osteotomy (PAO).

SARAH DANIELS

SARAH DANIELS

At the time, this surgeon was one of only two in the U.S. that performed PAOs. It was fairly new but had promising results. It had been three years since the onset of my symptoms, so I was desperate.

An incision was made into the skin, through the muscle, through the nerve, and into the bone. The pelvic bone was then cut in four spots, making it freely mobile and the head of the femur bone was reshaped. Lastly, the pelvic bone was tilted forward, and the femur is fit into the head of the joint. Three huge screws held everything together.

A PAO is one of the biggest major orthopedic surgeries in existence. The recovery was supposed to be 3 months and then I would have my right side done.

It took about 3 months for me to even move my leg on my own. It took 6 months to learn to walk again. Finally, after a year of recovery, I would continue on with my new normal: constant pain.

I had complication after complication from my hip surgery. Two years went by as I told my doctors I was continuing to have excruciating pain. They ignored me and told me it would go away.

I ended up going to a chiropractor when I herniated a disc in my back. After he took the x-rays he came racing into the room. Did I know my pelvic bone was broken in three different spots?

My bones had broken around each of the screws that were holding my hip together. No wonder I was in hideous pain.

I had surgeries to remove the screws, but my health continued to deteriorate. Emergency room visits became a usual thing for me. All of my joints began to fail.

Some days I have to use a wheelchair to get around because the multiple dislocations in my knees, hips, shoulders, and wrists prevent me from using a cane or even crutches.

I finally went to a geneticist and was diagnosed with Ehlers Danlos Syndrome (EDS). It is a group of hereditable connective tissue disorders with a mutation in the collagen, the glue that holds your body together. Symptoms range from easily bruised skin, broken bones and torn ligaments to digestive disorders and life threatening cardiac issues.

This diagnosis was my saving grace. It finally connected everything. On the same token, being diagnosed with an incurable chronic illness is an entire grieving process in its own. It is important to be responsible about recognizing signs and symptoms, but you also can’t let it consume you. You have to stay positive even though there is no end at the light of the tunnel. I began to find different ways of dealing with the pain, deep breathing, meditation, and listening to music. It was tough but I was getting by.

Then another problem developed. I was constantly sick to my stomach and couldn't keep anything down. I spent most of my days throwing up and didn’t know why. I lost 70 pounds. No longer was I only dealing with pain, I had no energy or nutrients to keep me going. I went to a gastrointestinal specialist, who diagnosed me with Gastroparesis.

Ordinarily, muscles propel food through your digestive tract but with Gastroparesis, your stomach's motility works poorly or not at all.  My digestive tract was almost 100% paralyzed. I had to do something or a feeding tube would be in my near future. I had always been overweight my whole life and never thought for a second, I would literally be starving to death.

On top of everything my illnesses had already taken from me, they was now taking my body. I stopped getting my period and couldn’t stop the weight from coming off. I went from a size 12 to a size 0 in a matter of months. Friends would tell me I was lucky I was thin. Lucky? I feared for my life!

I spent most of my days with my head in the toilet, praying I wouldn’t aspirate and die. When I was too weak to sit up on my own, my boyfriend would sit with me, watching to make sure I was safe. I would give anything to be able to eat again, to be able to look in the mirror and see my vivacious frame, instead of the sunken skeletal figure that was there now, but this is a distant reality for me.

Like Ehlers Danlos Syndrome, there is no cure for Gastroparesis. With medication, a new eating plan, and a daily shot to the stomach, I have been able to get somewhat of a handle on my illness.  

In the beginning of this story I was a happy, healthy, outspoken young woman with a great job, and the world on my shoulders. I had infinite possibilities ahead of me. I am writing to you now as a 29-year-old female with the body of an 80-year old.

I completely exhausted my savings due to my numerous surgeries, office visits, and medications. I had to quit my dream job that I loved. I am no longer able to work and had to file for disability at the age of 28.

I was let go from my most recent job after two years because they thought I needed to "focus on my health." I tried to keep my job for as long as I could. It was the last thing that kept me connected to the normal world. They provided my full dental health and vision insurance, which is obviously essential to my life. I’m now stuck with an almost $600 monthly Cobra insurance bill with no idea how to pay it.

I have thousands of dollars of medical debt, I am months behind on my rent and utilities, and at the time of writing, I have no groceries or gas. My illness has taken everything from me. My body, money, job, my positive outlook, independence, and friendships!

I am lucky to have a family that loves me. I have been blessed with an amazing boyfriend that does everything in the world for me, whom I love insurmountably. But even they are overwhelmed. Loving someone with a chronic illness is not always easy and definitely not always fair.

I’m writing this not to get sympathy. Sympathy won't help me. It won't cure me or make me better. I write to you because I want people to know that this horrible illness exists.

About 1 in 5,000 people are affected by Ehlers-Danlos Syndrome and the varying comorbidities associated with it. I want people to know that there are hundreds of thousands of our fellow human beings that are suffering from this rare illness.

Most doctors think if you have EDS it just means you are flexible. I have even had doctors tell me I should join the circus. If I have to, I will single handedly wipe out all of the ignorance surrounding Ehlers-Danlos Syndrome. It has now become my goal to create and spread awareness.

I don't spend a lot of time these days wishing for my old life back. It only depresses me. However, I do take time to think about the future. With medical technology advancing every day, and with the help of others, there is no reason we should not be able to find a cure!

I know this has been a long story to read. It hasn't been the happiest story or the most positive story, but it is my story. I will do whatever it takes to spread awareness. I only ask that you can join me in fighting for this cause!

Sarah Daniels lives in the Detroit, Michigan area. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Sarah would also like you to know that that February 29 marks Rare Disease Day, which seeks to raise awareness about rare diseases such as EDS.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.