My experience has been that there is nothing like a rare disease to make a person feel helpless. It doesn’t matter how many miles you travel (for me it was 7,000) to find expert treatment. Over time I know I lost my hope and sense of empowerment. Then last year I learned that empowerment sometimes can be found again in the simplest of ideas. My regaining my sense of empowerment had been 10 plus very painful, long years in the making.
Dercum’s Disease sufferers like myself face the same obstacles Too few doctors know about it and there is no known cure. Also, there are really no reliable treatments. I had just gotten married when it set in with a 60 lb weight gain, numerous painful lumps, brain fog and increased immobility. My physician had one other patient who in the past had the same symptoms. In the years to come I saw doctors from one side of the country to the other multiple times where Dercum’s Disease and other associated illnesses were diagnosed. Dercum’s Disease and two other of the disorders can put considerable non calorie based weight on a person. I likely had some of these disorders since childhood. All those years and no one knew why I was as I was. Having names for what was wrong with me helped, but there were no answers.
In spite of seeing the country’s top experts, I found zero relief. I still didn’t give up easily. I did both the standard and out-there treatments. I heard through a friend that she found hope spending a few days in an out of state University hospital’s ICU getting round the clock Ketamine infusions. Fearful of my husband losing his job, my husband had to drop me off at a homeless shelter- in that community. That is where I stayed until a bed opened up in the intensive care unit. During the treatment I went through a 2 day psychedelic trip. Ketamine can do that. It did not benefit my health, but I did though, acquire a small collection of wigs because of the hair loss. I tried.
As is the case with many with Dercum’s Disease, the weight kept coming on and my diabetes and coronary labs got worse. Tachycardia joined the mix. To make it harder to combat, Dercum’s Disease and physical workouts do not go together. There is a problem with the lactic acid that lingers around the Dercum’s Disease lumps. The only physical activity I can tolerate is in the pool and that is not easy for me to access.
I kept doing what the rest of the people in the Dercum’s Disease crowd were doing and whatever doctors said to try. My physical and mental state worsened as I appeared destined to live in an ever-growing painful shell where I would die young from cardiac and or diabetic health issues. That is what people with Dercum’s Disease usually die from.
Doctors told me that restricting calories would not help my disorder. My disorders kept the weight piling on. So like any other red blooded American woman, it didn’t keep me from trying. Is there anything we deem worse than being large? It’s how we are socialized. I followed Weight Watchers, RAD, Paleo, KETO, Low carb, the American Heart Association Diet, South Beach Diet, The American Diabetes Association diet. . It all combined had minimal positive results. Some had horribly negative results.
Every six months or so I was traveling to see one of the national experts on Dercum’s Disease and the other disorders commonly associated with Dercum’s Disease that I have. I would arrive with some hope. Sometimes I would be understood and sometimes I would feel not understood. They would put a hoop up for me to jump through, I figurately would jump it with bells and a smile. My Dercum’s Disease continued progressing. My health got worse.
Then I just could do it no more. I traveled out of state once again and was honest with my doctor.
“I’m ready to stop chasing the unicorn”, I believe were the words I used.
I do believe that there is some empowerment that can be found in accepting reality. The doctor that day told me to just accept it all as it being what it is. I have to admit that I was at the time relieved to hear that because I really could not handle trying anything else. Really had tried more ways of getting better than most. My family had sacrificed so much. All those miles and dollars spent on improving my rare condition and everything associated with it, and nothing worked.
Fast forward a year later. It took a weekend of endless vomiting, where I found myself in the hospital and received the lab results for me to finely listen to my body. It was the spring of 2018 when all that happened and the only logical conclusion was that I had to change my way of eating. I had been on the same way of eating everyone else in my shoes had been told to follow. I had been eating low carb and focused on proteins. From that point forward, I had to do something different. The only reasonably healthy foods left for me to eat were the foods I had been told would be bad for this condition. Sure they were the same foods I grew up eating from our garden, but they were considered to be “high starch” by current popular recommended diet standards.
I did some research and sure enough, there were studies done that for my overall health I could eat the garden delicacies such as basic vegetables and fruits. I could even eat beans! I felt I had nothing to lose. I would start eating this way, get labs done and then talk to my doctor.
I indeed did start to eat that way and within a month had labs drawn to make sure the change agreed with me. That cardiologist appointment to discuss the results was the best doctor appointment of my life. His receptionist asked me if I had gone through bariatric surgery. My cholesterol had dropped 57%, my A1C dropped 3 points, and I had dropped a couple clothes sizes and quite a bit of weight. The cardiologist told me to continue eating that way. He even cancelled some of the cardiac testing he had jotted down before seeing me.
That was the moment I felt empowered for the first time in years. I made a decision for myself, sought medical labs and advice at the onset and found my own way to make a positive difference for my health. . One by one, my doctors all were in agreement that I should continue eating this way. From Ohio State University to my cardiologist to my primary care doctor to my cardiologist, everyone was amazed with the results.
I just passed the 1st year anniversary of empowering myself through intuitive measures for my care. I have gone from a size 32 to a size 14. I’ve gone from 13 pills a day to one prescription and a supplement. I am no longer on diabetic or cardiac related medications. I have no more IBS symptoms or year round allergy concerns. My legs that had been miss shaped with one leg larger than the other, are now the same size and shape. I’ve lost 60% of my Dercum’s disease tumors in my stomach. For the first time in my post pubescent life, my top half and bottom half are the same size.
It’s’ true I still have Dercum’s tumors in my stomach, arms, along both ribs, along my spine and the base of my back. They are in my neck and head legs and feet. I still have difficulty sleeping, being comfortable, and the misery can be considerable. I have brain fog, but it’s improved some. I still have to spend my day with my legs up and spend more days in bed than I want to but there is no choice. I still am forced to use a wheelchair in the house when in the kitchen. A motorized scooter is how I manage myself out in the community. I average once a week getting out if my husband drives. Every now and then I can pull off driving if it’s just in the neighborhood. Sometimes a little further than that, but we don’t count on my being able to do such things. I am still significantly suffering from Dercum’s Disease.
But I use to have surgeries to remove Dercum’s Disease tumors. Now without surgery, 60% from one area have vanished and I possibly added 20 years to my life by improving my overall health. What is not to love about that? I wake up every day with hope. Hope is a powerful commodity not to take for granted. My finding my empowerment didn’t find a cure but it did find a useful treatment for Dercum’s Disease, Lipedema and Lymphedema . Those disorders have not advanced. They have improved in ways that shouldn’t have happened through just nutritional changes. . It also reversed my cardiac and diabetic numbers so I could get off all that medication. So while there is suffering, to have any positive change, I am so grateful.
Empowerment isn’t about suddenly being handed a magic wand and all your problems are solved. Empowerment doesn’t mean what works for one person will work for another. Empowerment for me is that I can count on myself to make decisions and to think for myself. You never know what might change your life.