Adrienne McGuire's EDS Story

I am thrilled to welcome an amazing guest poster to Defying Gravity, Adrienne McGuire. Check out Adrienne's other compelling reads at Daily Path.

I’m 37 years old and was diagnosed with Ehlers-Danlos Syndrome Type III just last year. I have two children who are both very active and require a lot of physical and emotional attention, which can be a real challenge when you’re suffering, which I have been for most of their lives. I saw many different doctors over the years, all of whom proclaimed that they could find no reason for my pain. Some chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else going on.

Hindsight is 20/20; isn’t that what they always say? Looking back now, I can see that my EDS and POTS problems started when I was young with several fainting spells and a distinct inability to withstand any amount of heat without passing out or nearly passing out. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears daily. And that was eleven years before my diagnosis.

Last year I had to say goodbye to the old me and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of EDS along with a case of POTS that fluctuates with hormones, as do my other EDS symptoms. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down. I had to explain to my children that I can’t do all of the physically active things that we used to do, and that was really tough. I mourned my lost abilities to run, hike, carry my kids, and play on playgrounds. I had a mental break and ended up in the emergency room several times. That was 9 months ago. Today, I am moving forward.

Though I lost some abilities, I gained so much in the way of mental strength and focus. I could no longer work as a legal assistant but I became insanely determined to create a life for myself that worked. By pacing, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning how to ask for help, I have managed to look at my life with a positive spin. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I take medications that control my POTS symptoms which means I can get out more, albeit in short bursts. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than I ever was before.

Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate ladder to create a life that worked for her.  Her journey down the road less traveled took her to www.dailypath.com, where she is now an integral part of the writing team.

And The Winner Is...

Congratulations!! Please send me your mailing address! I hope you enjoy your FaceCaddy! :)

Why Hands-Only CPR Could Be Dangerous

One of my biggest phobias is passing out in public. Granted, it has only happened once but it was quite a memorable occasion considering it happened on the day of my college graduation. Luckily, my friend was able to rouse me and I don't think I was out for too long. I was given some water and snacks and muddled through until the ceremony was finally over and I could get the heck out of the blazing sun and into the air conditioner. I thank my lucky stars that no one called 911 and that no one made a huge scene.

Since that day I have hoped that I never ever pass out in public for fear of people making a scene, calling an ambulance or even administering unnecessary CPR. The following public service announcement advocates the use of hands-only CPR, which I am not opposed to at all. I do take issue with the incomplete CPR instructions, however. While I love that this PSA incorporates sign language to drive home the hands-only CPR idea, it's message could be potentially dangerous for a potsy who passes out in public:

"If an adult suddenly collapses, call 911. Then push hard and fast in the center of the chest."

Um, they skipped the part about listening for breathing and checking for a pulse...in the wrong overeager hands, hands-only CPR could result in unintended harm for people who pass out. Just because an adult has passed out does not necessarily mean they have suffered a heart attack. It could be a low-blood sugar issue, a heart arrythmia or orthostatic hypotension.

Always, always call 911 FIRST and FAST! Then, assess the situation quickly. Check the ABC's: Airway, Breathing, Circulation. Make sure their airway is unobstructed and clear. Check to see if they are breathing. Then check their pulse to make sure they have one. If they do have a pulse, DO NOT administer CPR, at least not yet. But keep monitoring their pulse until help arrives. It is also courteous to say something like "I'm here to help," or "Help is on the way." The person may or may not be able to hear you but try to keep them calm and comfort them. If they have any clue what is going on then they are likely pretty terrified. If you do have to administer CPR you may end up breaking a person's ribs, but that is a small price to pay for keeping them alive. And remember, you are protected by the Good Samaritan Law. No one is going to press charges for trying to save their life.

Top 10 Dumbest Things Doctors Have Said About POTS/EDS Diagnosis

Earlier today it occurred to me I have encountered some really, ridiculously dumb doctors these past few years. I seriously wonder how some of them ever made it through medical school. I figured I should compile a top ten list while I'm thinking about it so I don't forget some of these gems. Good for a little comedic relief. I actually laughed out loud in their offices at a few of these.

10) "Is it too late to join Cirque Du Soleil?"--Sleep Medicine Doctor upon hearing about my EDS diagnosis

9) "Just stand up slowly and don't do squats or you might pass out."--Primary Care Provider's advice on how to manage POTS

8) "You're so flexible you shouldn't be in any pain. Only stiff old people like me have pain."--Primary Care Provider's response to dislocated jaw

7) "Here's some tissues and a prescription for valium. Have you ever seen 'Valley of the Dolls?' That was a good one."--Primary Care Provider's treatment for dislocated jaw

6) "I'm going to get you something hard to bite down on for whenever you're in pain."--Primary Care Provider's prescription for TMJ pain

5) "Surgery never holds on people like you."--Orthopedic Surgeon examining my joints

4) "Oh wow--your elbows! That's pretty wild!"--Physical Therapist upon joint evaluation

3) "That is the only joint in the body we never learned about in med school."--Orthopedist in regards to the TMJ

2) "Trust me, I'm just as scared as you are!"--Anesthesiologist 5 minutes before my appendectomy

1) "Go home and take it easy. Try to get some rest."--Just about every doctor I've ever seen. Don't they think I've tried that already?

Beat the Summer Heat with a FaceCaddy!

As a chronic TMJD sufferer with EDS I have been enjoying my FaceCaddy for several months now. The last few days have brought warmer weather and I once again realized just how great this product really is, not just for pain relief but for temperature regulation as well. Regardless of whether you have headaches or jaw pain, the FaceCaddy renders ice packs easily wearable, which is perfect for potsies in hot weather! I suffer from extreme heat intolerance, as do many other dysautonomia patients. The relief this product provides is tremendous. Due to the FaceCaddy's insulation, the ice packs stay cool for a long time without having to swap them or refreeze them.

I love this product, and am going to give away another zebra FaceCaddy to one lucky reader to celebrate the summer solstice!

To enter the Summer FaceCaddy Giveaway, please leave a comment below and let me know why you'd like to win! Also be sure to list your name and email address.

Entry deadline is July 10th. I will draw a name from my big floppy beach hat and post the name of the winner here on Defying Gravity, so be sure to check back after July 10th. Winner will be selected at random.

*You will automatically receive one bonus entry if you entered my first FaceCaddy Giveaway in honor of EDS Awareness Month.

*Anyone can receive an additional entry by sharing this giveaway post on Facebook.

Thanks for reading and good luck! :)

If you can't wait until July 10th and want to order a FaceCaddy now, purchase any CaddyWraps product online at CaddyWraps.com and enter "Take5" in the coupon code for $5 off your order!

Compression Gone Colorful!

I could not be more thrilled that Juzo has decided to make compression hose more colorful. It's about time a medical-grade compression company married function and fashion! I was SO elated to receive these beauties on my doorstep. Shown in pink, fuschia, and ocean, respectively. My only caution is that the fuchsia is a bit more reddish than pink, but a beautiful bright color nonetheless. They fit and feel awesome! Check them out!

I am 5'3", 115 pounds and wear size 7 shoes. In Juzo I wear size small knee highs in 20-30 compression strength. To obtain your own measurements, simply measure the circumference of the widest part of your calf and the circumference of your ankle. It may also be helpful to measure the length of from your knee to your ankle (especially if you're particularly tall). In order to work most effectively, compression stockings need to fit fairly snugly so determining the right size is important. They are also available in 30-40 if you need a stronger grade compression. And finally, they come in an array of LOVELY colors for nearly every occasion. Juzo even makes tie-dye ones now! Check out all the options listed below.

For a much more detailed guide on the latest in fashionable compression gear, check out Michelle's recent post aptly titled, 'Compression stockings: From beige to brilliant.'

For more information on the Juzo colorful compression line, please visit www.juzousa.com or call 1-800-222-4999.

BackCaddy Review!

Anyone who doesn't know about the CaddyWraps line yet should. Not just people in chronic pain (like me lately) but anyone who has a pulse. Last month I introduced you to the FaceCaddy, which has been a godsend for helping me cope with intense TMJD headaches. Anyone who goes to the dentist should own one!

The BackCaddy utlizes the same time-tested insulated ice/heat technology to provide lasting warmth or cold therapy to relieve sore muscles and joints. The BackCaddy helped me get through a particularly painful period this month: I strapped it around my waist to help relieve menstrual cramps. Normally I wear a ThermaCare Heat Wrap but those are a bit pricey and add up since they are a one-time use product. I also have a trusty hot water bottle but it sometimes leaks and I have actually burnt myself with it before because I filled it up with too hot of water.

The BackCaddy on the other hand, is foolproof. Comfortable, portable and powerful. I popped the large gel pack into the microwave for less than 2 minutes, placed it in the insulated BackCaddy and strapped it on for several hours. To my pleasant surprise it stayed warm until I removed it! I REALLY REALLY wish I would've owned one of these right after my appendectomy earlier this year. The hospital sent me home with an awkward, rock hard ice pack that leaked. The BackCaddy would have saved me from extra aggravation and suffering for sure.

I recommend the BackCaddy without reservation for anyone suffering from EDS, back problems, menstrual cramps or even abdominal surgery recovery. It is available in two different adjustable sizes. At 5'3" and 115 pounds I am far from a giant, but I was able to wrap the BackCaddy taut around my waist to fit perfectly and comfortably.

Also, I was pleasantly surprised to find that the BackCaddy features gentle compression which is GREAT for POTS patients, especially in the abdominal area where our blood tends to pool following meals. Would work well with the gel icepack (included) in the summertime as a more affordable alternative to a cooling vest and the extra compression the BackCaddy provides is an added bonus for any potsy.

You can purchase a BackCaddy and the entire CaddyWraps line at CaddyWraps.com or Amazon.com.

Acupuncture May Support Autonomic Function

I have decided to give acupuncture another try. I tried it nearly 5 years ago following my car accident before my POTS had been diagnosed. I was very, very sick at the time. My acupuncturist always commented on my fast pulse and how it would eventually settle after I had been laying on the table for awhile. At the time he determined I was suffering from adrenal fatigue, (which I probably was) in addition to the undiagnosed autonomic dysfunction.

It was the lowest point of my life, when I wasn't sleeping for days on end, consumed by the chronic TMJ headache and tachycardia. I could barely even describe my symptoms at the time, they were all consuming and I was truly afraid I was dying. Just to think back to that time makes me shudder. I've come a long way since then, but my jaw seems to be getting worse. As I mentioned before, I have these stubborn muscle knots behind each ear that also cause earaches. Nearly every doctor I've been to has diagnosed me with TMJD. What brought me back to the acupuncturist is the fact that he knows how to use needles. I'm hoping to try some dry needling of the muscle knots there to see if it will break the spasm cycle and for how long.

As far as acupuncture is concerned, I believe there is some real validity in the science behind the centuries-old practice. This is not to say I have totally given up on all realms of conventional medicine (at least not yet!) but that I think eastern medicine more effectively assesses the patient as a whole, interconnected being instead of simply another number to send home with a prescription. Western medicine tends to rely too heavily on chemical pharmaceuticals, dispensing a different pill for each separate symptom while never stopping to consider if symptoms are somehow related.

In a perfect world, everyone would have easy access to truly integrative medicine, where doctors of all disciplines unite to most effectively treat the patient and all their ailments. I have yet to find a place like that around here. Eastern and western medicine should work well together instead of against each other. Many conventional practitioners dismiss the effectiveness of acupuncture or consider it some sort of voodoo magic. Acupuncture, however, is not magic, but rather a slow healing process that has been scientifically proven to effectively treat many conditions. I believe there are many ailments that respond well to acupuncture and many that require the intervention of more westernized medicine (i.e. my appendicitis earlier this year). However I have to wonder why my appendix went bad in the first place. Would it have still gone bad if my body were healthier on the whole? Perhaps. Or perhaps not.

I had my first session today and so far so good. No significant noticeable progress yet but no worsening of symptoms either. As long as my insurance approves this, I intend to continue with acupuncture sessions this year to improve my overall health and hopefully combat these painful muscle spasms. I read something interesting the other day, a current theory on the mechanism of acupuncture worth sharing:

Autonomic Nervous System Theory: Acupuncture stimulates the release of norepinephrine, acetylcholine and several types of opioids, affecting changes in their turnover rate, normalizing the autonomic nervous system and reducing pain.

Therefore, acupuncture should only help improve my POTS symptoms too. I will continue to provide updates on my adventures in acupuncture. Stay tuned.

Giveaway: Summer Survival Sample & Coupon Pack!!!

Greetings my fair readers! Summer is here already and I wanted to make it a priority and host some fun giveaways for my lovely readers. As most of you know by now, I am extremely sensitive to chemicals and allergic to just about everything (a slight exaggeration, but you get this idea...). I figured it would be fun to assemble a pack of products I use regularly (in sample or coupon form) that agree with me and my crazy body. In the summer survival kit, you'll find an array of toiletry samples such as lotions, face creams and serums, shampoo and conditioner, body wash and other fun random surprise items to brighten your day. :)

You will also find high value coupons for some of my favorite products including a coupon for a FREE six pack...of Dole Pineapple Juice. Not quite the six pack you had in mind, right? But WAY healthier during the summer months! It's high in potassium and vitamin e and helps level out my electrolyte levels. My favorite thing to do is mix it with coconut milk and guava juice and pretend it's a real mixed drink. ;) I've also included coupons for O.N.E. Coconut Water, one of my favorites!

To enter my summer survival kit giveaway, simply leave a comment on this blog post with your first name and become a follower (unless you are already following, of course). For a bonus entry into the big floppy beach hat from which I will draw not one, but TWO lucky winners who will each receive a summer survival kit, please share this with your friends on Facebook!

Enter by June 21, 2012!

Good luck! Hope that you enjoy these products as much as I do!

June 6: Day of Visibility

Image courtesy of Jane L. Stoops-Smith.

Download your free poster at DysautonomiaPrison.com to commemorate the Day of Visibility for Invisible Illnesses.