Hey, Jameela!
I rarely have an autonomic crash these days.
I had one when we arrived in San Diego for Comic-Con 2019.
We took the late train from Union Station. When the Amtrak doors opened three hours later, in swept the San Diego humidity. I got clamy and sweaty as we pulled our suitcases a mile to the Marriott, because why not get all the exercise you can.
Then we took a fast elevator up to the 22nd floor. Ruh-ro.
The barometric change plus the rapid ascent was more than my nervous system could figure out.
I felt terrrrrrrrrible.
I got very pale, which isn’t a good look for me.
Faint, dizzy, weak and mildly nauseated, with claustrophobia and panic. Isn’t EDS fun. In these situations, I tell my brain there ain’t nothing to worry about, Pumpkin, and proceed with my plans. With caution.
I managed to jump for joy in front of the Hard Rock Cafe, which was converted into The Interdimensional Hole of Pancakes from The Good Place this year. Seeing myself able to do this makes me so f*cking happy.
It took hours for my distress to pass, for my body to find its equilibrium again.
We came back the next morning for breakfast.
I used to skip breakfast, but I discovered that I feel better all day if I eat soon after I get up. New research links skipping breakfast with early mortality. Yikes. Bring me a pancake!
You know who is on The Good Place?
Jameela Jamil
The Ehlers-Danlos Society just gave her an award for going public about having Ehlers-Danlos Syndrome.
Right awn!
“Hey Jameela!
Thanks for the shout out.
You have made my life easier.
Now, I can just say that I have what Jameela has. Even better, some friends have said it to me!
You know how much time and energy I have wasted trying to explain EDS to people who really were only trying to figure out if I had a made up thing like Lyme* or am just depressed or lazy?
I’ll bet you do.
And it’s not like they are going to understand anyway. Because doctors don’t even understand what is wrong with us. When they finally do, it will be f*cking awesome and will lead to better treatment. Because treating this mess is a f*cking nightmare, which I am sure you know.
Wishing you the best!
xo - m.”
*No offense to anyone with Lyme because it is a real disease.
The last thing I would ever want to do on my blog is offend someone.
But unless you were actually bitten by a tick, do yourself a favor and persist at getting a correct diagnosis. Your collection of symptoms deserve their proper label.
We all sure know how hard that is.
But it’s worth it because correct diagnosis is what leads to correct treatment.
Yolanda Foster’s story of Lyme disease is the most tragic account I have ever read of mis-diagnosis, patient exploitation and abusive, sham treatment. Her book gave me nightmares. It is so horrifying, it might just make you feel better about having Ehlers-Danlos.
Tragically, Yolanda still thinks she has Lyme. She is sure the medieval, delusion-based “treatments” she has paid hundreds of thousands of dollars for helped her because they made her so much sicker. Results, for sure! Facepalm.
Being very ill can be very confusing. You can be so sick (as Yolanda is) you cannot tell if you are getting better. You can’t think clearly enough to find your way to correct advice. Being very ill makes you feel hopeless, powerless and victimized. When doctors are cruel, you become an easy mark for conmen and charlatans, so shame on MDs for making things worse in that way.
As for my affliction, Ehlers-Danlos Syndrome, most doctors don’t know anything about it.
You’d better educate yourself fast! so you don’t take damaging advice.
We get offered a plethora of surgeries. I cannot tell you how many joints or bones I’ve been told I “need” surgically corrected. It’s been a lot, starting in my childhood, long before I was correctly diagnosed. I would do one if it made sense, but so far I have had zero.
See this slide from the EDS Nashville Learning Conference by Dr. Chopra, a leading EDS expert.
Surgeons make a lot of money when they perform their highly specialized skill, which they spent years learning. Health insurance complies. Surgeons don’t follow up with their own patients over time to see if their surgeries actually helped. This is tragic.
I cannot tell you how many times I have heard an EDSer say, “The surgery helped for a little while.”
Is a surgery supposed to be a temporary fix? I don’t think so. Maybe what helped was rest, ice and pain medication, not even the surgery.
Healing-oriented, minimally invasive treatments that have helped me improve my joints are: bracing, PRP and prolotherapy. It isn’t right that insurance companies pay for extremely expensive surgeries but not for these simple joint injections. What an inefficient use of healthcare funds.
When I was totally disabled (as I was for many years) I made my #1 priority monitoring my symptoms and trying to improve them. In fact, I shut out everything else. I missed the entire Obama Presidency because I was very busy being completely self-absorbed with (1) not losing my mind from EDS torture (2) finding a way to get some improvements out of my defective body. I heard it was much better than what’s going on now, so sorry I turned out. Oh well.
Back then, I used to make longs lists of my medical issues and think hard about each one.
Me: What to do to make this bit of torture go away?
Me: I’m going to need some luck, that’s for sure.
I’d try to learn. This was when the internet was a baby so information was scarce. I had to go to this building called the library and open a thing called a book. They’re made of paper. You have to flip through them by hand.
Me: What can I do to alleviate any little bit of my suffering with the ultimate goal of unburdening my body and getting really healthy! Or at least to a level of discomfort I can endure, which is more realistic!
To admit to myself that I wasn’t improving made me despair, but opiates helped with that because they give your brain a feeling of peace and optimism. I took the minimum I could to get by. My dose did not kill my motivation, luckily. I was always 1000% driven to improve my health and get a life. Loss of motivation is a common consequence of cannabis use, so do be careful. Cannabis also causes more anxiety and depression over time and is linked to higher rates of suicide. It also shrinks your brain. And it’s highly addictive. Hey there was a time when opiates were thought to be miraculous, too. Hope I didn’t offend anyone.
For years I tried to improve with activity and exercise, but got pretty much nowhere. Ouch.
When I got a boost from something Dr. Plance was giving me (what was it?) I noticed. I was paying close attention and totally focused in on how I was feeling and what was working. The biggest factors I evaluated:
“Am I stronger? Sleeping better? With more energy? Less pain? Able to like do stuff? On injected C, yes! ”
With injecting C into my fat, I began to heal like never before. I began to catch up on my sleep deprivation, and to think more clearly. The more frequently I injected C, the better I felt. Finally, after six months of doing this everyday, I could exercise and handle it. It was slow going. Physical rehab hurts for anyone who is severely de-conditioned. One must persist.
From more exercise, I could get much needed healing circulation and more strength which improved stability, all of which conspired to relieve my EDS suffering even more. No pill or diet change or surgery will do for you what exercise can, Kids. And that is true for collagen-typicals as well. Did you hear this episode of the Hypermobility Happy Hour where Lara Bloom talked about how much exercise has helped her? Je suis d'accord, Lara!
It is a common thing for an EDSer to add more and more procedures, supplements, restrictions, diagnoses, drugs and surgeries to one’s regimen, and proclaim it is all working. But it may be a confused mess that is draining your money and time and attention and perhaps even making you worse. See Yolanda above. No offense to anyone.
Unfortunately, medical interventions can cause more damage and more problems for patients as delicate as we are. I know of instancessssss of EDSers getting spine fusions and this leading to digestive organ shut down. Our healing problems are underrated. Ports and surgical sites can get infected and fail to heal. Unacceptable risks!
Eventually, with frequent injections of Vitamin C, I became un-disabled and got off all my pain meds and went back to work. Now I wake up rested, ready to go. I never crash. I exercise almost everyday. I do TRX and kettlebells. I exercise like a man.
Delivering Vitamin C to my body everyday by intramuscular injection everyday seems to compensating for my genetic error.
I got here from listening to body with ruthlessly honesty, being focused on my goal like an elite athlete. And getting really f*cking lucky. Which is why I write my blog. If you were the one that got lucky, I sure hope you would tell me.
I also continue to learn everything I can so I am able to make choices that will enhance my health, not create more problems. It is very tricky to know what to do when our disease is so poorly understood.
We could help each other by being honest about negative consequences from treatment. I’ll start here.
I will admit that Lexapro weakened my bones more than opiates. I didn’t know this might happen. I was pisssssssed when I saw that DEXA. I got off Lexapro gradually but quickly. Then I went on Microzide for my bones. I’ll let you know how that goes.
Chiropractic adjusting was the very worst thing ever done to my body. I wish I could take that back.
One of the things I am most glad I did, besides saying no to surgery, was cut out antihistamines. They are so hard on the brain and we already have enough brain fog and fatigue. Why the brain takes such a beating from chronic illness is not understood but it does. Rehabbing the brain is essential for EDS, in my bold and unapologetic opinion.
Long-term effects of antihistamines are not known, but some studies of what they do to the immune system are concerning. If you take a lot of them they may cause a rebound effect when discontinued, meaning worse mast reactions. An EDSer might also be driven to take them because they calm the anxious nervous system, so other ways to chillax must be found. Personally, I link my mast reactions to anxiety and panic, not environmental triggers. When I get a painful rash, it’s time to wave my white flag for the day and give up. I fully embrace my feelings of defeat. I take a nap, if circumstances allow. I only nap my couch with curtains open and TV on so my body does not get confused and think it is nighttime and throw off my circadian rhythms.
This is why I high-dose naltrexone. It knocks down that EDS anxiety in a way that makes my brain more resilient and less anxious, not more dependent and more sluggish and stupider like opiates, antihistamines, benzos and cannabis do. Hope I didn’t offend anyone.
Don’t forget how much I dislike Pilates and yoga for hypermobile people! For God’s sake, stop contorting your spine and pulling your joints out place! You are making yourself worse! Do stabilizing exercise! There!
I have offended EVERYONE!
Comic-Con was fabulous, especially because I have been so many times, I now refuse a convention pass. I just can’t go in there again. Mr. Pennington took this pic while I hung around San Diego.
We danced at Hop Con where they had a Silent Disco this year. Yeah!! I love to dance. I can’t do the cray-cray beer flavors there anymore, so I snuck in wine.
We toured the Maritime Museum which I highly recommend.
I captained a submarine and imagined having scurvy during the Age of Sail, which wasn’t hard.
Perhaps best of all, I got the most amaaaaaaaaaazing sports bra at the Reebok store, called the PureMove.
The saleslady promised me I’d love it. She was right.
Since I run now and do plyometric moves, I needed something better for impact. I’m a 32F, all real.
I tried it running on the treadmill at the hotel gym. OMG. This thing feels like neoprene but it isn’t. It actually hardens up with movement. It’s magic!
I went back to the Reebok store, thanked them and bought another. They gave me the Comic-Con discount.
This bra is a deal at only $60. You can get a really awful sports bra that does nothing for way more money.
“The Reebok PureMove Sports Bra was named one of the world’s ‘Best Inventions of 2018’ by TIME Magazine. Challenging what we expect a high-impact sports bra to be, the PureMove Bra has a minimalist, sleek design with free-cut edges for a barely-there feel. This design is made possible by revolutionary fabric with Motion Sense technology that reacts to your movement.”
This bra is f*cking awesome! Get one and try some skater hops. What fun.
Did you hear what this sexy guy said about how this exercise effects the nervous system? Tone up yours with circulation, speed, agility, coordination, balance and resistance.
And some cray-cray jumping jacks. F*ck eah!! Work out like a man!
You must keep your knees pushed outwards when doing jacks. Do not let them fall inwards, in which case the kneecaps cannot track properly, ouch! He moves is knees well.
Gradually build up to dynamic moves like this. Fix your posture, too. You must use your joints as nature properly.
You might be able to if you inject Vitamin C every day.
Have you seen my blog?