We have been married for like a thousand years, and when Mr. Pennington and I were first together, we loved to go to Disneyland. Back then, in my 20s, I was so ill and weak from Ehlers-Danlos Syndrome that he had to push me around the park in a wheelchair. I am hardly the only EDSer that ever needed that. Horrifying to be so young and so sick! We made the best of things then.
Fast forward to now, five years of injecting myself with Vitamin C everyday.
Mr. Pennington and I went to Disneyland. We spent the night. We had not been in many years. The first day we did Disneyland Park. The second day we did California Adventure.
We walked a total of 18.5 miles over two days. Yay for us!
I think I have outgrown Disneyland. I am only willing to tolerate crowds like Christmastime Disneyland at places such as the Louvre. At both venues, you risk getting trampled to death if you go at the peak of tourist season. Never again do I want to go to Disneyland in December.
I highly recommend the masala lamb cheeks and also the pork adobo from the food carts at California Adventure. There is nothing good to eat at Disneyland Park, in my opinion, except for the frozen bananas, which I think are better than the ones served at the LA County Fair, which does have some great food. At D-land, other than my frozen banana, I save my appetite for later. There are many fantastic Vietnamese restaurants in Orange County to enjoy.
I try to eat only when something is worth eating, an easy weight management strategy from French Women Don’t Get Fat, a book I highly recommend. You save a lot of calories if you skip the mediocre. I must spare my feet, knees and hips the strain of excess pounds.
The placebo effect is powerful, so powerful that it is a major problem for researchers doing clinical trials. How can they tell if a drug is working or it is just a placebo effect? Your own brain, if it is convinced it is being helped, will flood your body with happiness and pain relief. Perhaps nothing is worse for a human than hopelessness.
How do you know you are benefitting from a placebo or actual healing?
Placebos (and I do love them!) wear off.
I survived my intractable Ehlers-Danlos pain and fatigue on the placebo effect. Before I was diagnosed with Ehlers-Danlos. I could not think clearly, so it was easy to fool myself. I blocked out the outside world, also easy when so incredibly ill. This got even easier loaded on opiates, which make you feel that everything is okay.
In those days, I constantly convinced myself that what I was trying right then was absolutely helping me. I would have lost my mind if I had not done otherwise. Looking back, it was all wishful thinking. In fact, most things I did made me worse, in large part because I did not have a correct diagnosis. But the idiot things I did gave me hope, and that kept me going, so not so idiotic after all.
Nowadays I stay away from quackery, do my own research, and always try to expand my medical education. This is easy because the internet exists. I also visit the Los Angeles Public Library to address my medical problems. It was impossible to do searches for library books before the internet. I am on my way to the library now, to pick up the holds I placed. I am learning about the nervous system these days. How do you get the nervous system to return to normal after a lifetime of pain? Must be a way!
Get a correct diagnosis!
Only if you know what is wrong with you can you avail yourself of what is known about your disease and how to manage or treat it. If you have no diagnosis or a wrong diagnosis, you are groping in the dark or headed in the wrong direction. You are also susceptible to quackery. Quacks are very good at extracting money out of very ill people.
I was only hopeless with my diagnosis for a few weeks. A chiropractor pointed out I have EDS shortly before I met Dr. Plance. I endured only a few weeks of planning my suicide before I met this fun, magical person, who suggested I not kill myself because all we had to do was get me to heal a little, and, really, what was the big deal with being super flexible, right??? No, totally wrong, but nonetheless the right attitude! Why?
Genetic disorders are monstrous messes coming from only one very simple in cause: one biochemical failure.
Regular diseases are way more complex and have a ton of factors that cause them. What a relief to know! Human genes multi-task, which is why one failure of an important gene to do it’s job right makes such a big mess.
Dr. Plance refused to treat me like I was hopeless. We never ever even discussed that. He just made me laugh and kept trying to push my body to heal. Easily entertained, I kept coming back and he kept trying new things on me, since I was game for that. We had a lot of fun, and mostly discussed life rather than my disease. Our relationship turned out to be an incredibly fulfilling and wonderful experience for which I am truly grateful.
“You walked 18 miles? Are you okay?” he said.
“I’m fine. My feet hurt a little,” I said. Then we laughed and laughed. It is just so funny.
“Hey would you take my name off your blog?” he asked.
And here we are. Ehlers-Danlos managed. Me looking good and having fun, which is the meaning of life.
My skin is also benefitting from the C loading via intramuscular injection. I am aging so well, I don’t even have a plastic surgeon yet, and I live in Los Angeles. I am letting my hair go grey because while getting hit on by boys in their 20s is nice for my ego, it is awkward. They simply aren’t good at it. Over 40 only, please.
I still have aches. I am still a flimsy person. But I am on no pain medication regularly. I have an excellent quality of life, not just because of the C shots, but also from intelligent use of exercise and posture. This reminds me, I should mention a book that changed my life: 8 Steps to a Pain-Free Back: Natural Posture Solutions. I cannot comment any better on using your joints well than this author. I suggest you pick up a copy.
I slept 11 hours the night we returned home from our weekend at Disneyland. I soaked my feet in ice water the next morning.
My feet were the first part of my body to transform into an unending feeling of ripping-apart-pain-meltdown. None of the damage to them is surgically fixable, honest podiatrists tell me. This is fine, because I prefer to keep surgeons out of my joints.
I manage my feets with the help of another fantastic book Every Woman’s Guide to Foot Pain Relief. Her suggestions are different from what podiatrists told me to do for my endless foot pain. This book keeps me running around doing whatever I want, and also makes my knees and hips happy.
If all this injecting of C had been a placebo, I would have returned to my baseline misery years ago. Healing takes time, especially collagen repair. I have only continued to improve. #NotAPlacebo