Wednesday, July 29, 2015

Finding the perfect ankle brace... like searching for a needle in a haystack.

And lucky for you, I have done the dirty work. You're welcome.

I know everyone with Hypermobile type EDS is different. Anyone can be ridiculously flexible anywhere, but most people are especially flexible in specific parts of my body. For me, it's my lower half, especially my hips and ankles. Fun fact/party trick: I can turn my ankles 180 degrees behind my body with little to no effort. I didn't even know or realize I could do this until I had EDS, but I started learning very quickly that if I pivot quickly without thinking, I do it all this by accident all the time. And it hurts. I started to feel like I was rolling my ankles on nearly a daily basis--not even from exercising--just daily life being a klutz. I was and am hoping I never have to wear an ankle walking boot, like many EDS-er wear 24/7.

Before I told my geneticist about this, I started looking online and again, with the theme of this blog, came up with little to nothing. My ankle braces started out mild and continued to get crazier and more intense as I found new things. My ankles are so unstable that I am convinced there is almost virtually nothing on the market to keep them in their places, except ONE brand, which I will share. 

Here is the ankle brace spectrum/my ankle brace journey.

MILD (and my first ankle brace): McDavid Classic Lightweight Ankle Brace

Not even close. Not. even. close. This brace did little to nothing to stabilize my ankles from rolling side to side. Almost laughable.

I thought I'd step my game up considering these are lace up, plus the s-wrap around the ankle, plus the strap around the top. Turns out---nope.

MEDIUM-HOT At this point, I had seen my geneticist, who agreed I needed a brace. She recommend the Bauerfeind MalleoTrain S Ankle Support

My geneticist is really into Bauerfeind (a German product) and honestly, the quality of their products is not amazing but comparatively to everything else on the market, it is the best. The reason this one doesn't go up a full level in severity is because it's not very different from the last and I was definitely in between sizes. The sock feels like a compression garment. But the size 2 felt like it was cutting off circulation and my toes were turning purple but the 3 felt so big it felt like it was doing nothing. I also felt like the strap gave little to no support as well. I wasn't asking for a brace to completely hinder my ankle moving my foot from side to side, but I would at least like it to prevent my ankle enough from rolling it. This didn't do that. At all. 

So, from pictures, this one may not seem that different. Is it the perfect brace? No. But Bauerfiend had greatly improved their product from MalleoTrain S. It may not be easy to see in this picture but they have added an extra piece on each side of the ankle that supports the outer part of the ankle bone. For some reason, that made a big difference. Strangely enough, the size 2 that felt so shitty with the last Malleotrain feels much better with this. It's still not as stable as I would need, but it does comfortably fit in an athletic sneaker, so I wear them now for exercise and extended walks. It actually also feels more stable in a sneaker as well, so finally, we have a KEEPER. 

SUICIDAL (/the ultimate ankle brace) Bauerfeind Malleoloc Ankle Brace

This brace was probably made by some evil genius in Germany. This thing is 100% pure ridiculous--in the best way possible. While it is sadly too thick on the sides to fit in an athletic sneaker, it can be worn with other shoes like Converse, etc. This brace actually has foam on the inside the contours to your body. When you wrap the "S" strap around your ankle, it literally has a lock on the outer side so your ankle is just about as stable as it gets. My foot pretty much cannot roll at all. Only up and down--as a foot should. I don't wear this out. I wear them around the house when I'm home and they help. I also wear comfy old long song underneath (that I've cut the toe off of) and stole from my dad. (Sorry Dad.) Yes, they are silly and ridiculous looking but it saves me a lot of hassle so it's worth it.

So, these last two are the two I own and wear for different reasons. Bauerfeind, if you're reading this, I will be the next bionic woman (probs) so feel free to make me your spokes-girl. I look good in blue. 

(It's a Beyonce day.) 

Tuesday, July 21, 2015

Motivational Chronic Pain Related Quotes: For the Basic Bitch in All of Us Part II

A few months ago, I wrote a post that seems to be pretty popular. I decided to add on to it because I am (secretly) a basic bitch and also (still) obsessed with quotes. (Again, if you didn't read the first and you can't read what it says, you can click on the photo to make it larger.)

Here's a few of my new favs I save for a rainy day:

Monday, July 20, 2015

On Caregiving: A Note From My (Amazingly Supportive) Father

I used to be able to watch those pleas on television for money to feed the starving children in Africa and and be completely devoid of any emotion. You know those commercials, children with distended bellies, flies taking up residence in their eyes and some C-list celebrity trying to guilt you into donating “just a dollar a day.” Barely made an emotional dent. And I have to admit that I did feel just a wee bit guilty for not my lack of empathy, but not enough guilt to distract me from whatever I was watching before that damn commercial interrupted things.

But then we had kids.

Somehow the mere presence of these cuddly, screaming, adorable, sleeping depriving entities unlocked the emotions stashed in the recesses of my brain. Any TV show, movie, or commercial that depicted a child in any sort of distress induced that salty moisture in my eyes that I heretofore had hardly ever experienced.

As any parent will attest, the absolute worst is when your own child is ill or injured. The slightest fever could induce completely irrational fears of childhood leukemia. And don’t even mention the apprehension of flesh-eating bacteria that was induced anytime any sort of skin redness appeared.

Luckily, both of our children made it through the childhood and adolescence relatively physically and emotionally unscathed. Despite our best efforts, it did not appear that we caused and long-lasting damage to either of them. Our daughter graduated from the top fashion school in the country and and secured the job of her dreams in New York City. Our son was off to college as a pre-med with a high ranking GPA. While our arms were a little sore from patting ourselves on the back, we were just beginning to relish and enjoy our time.

And then it happened. February 23, 2013. Our daughter was at an ER in New York with searing pain in her neck and shoulders. Over the next several months, the pain migrated to her back, sides and hips. To make a very long story short, Erica had to quit her job and return home to live with us, exactly what a 24-year old had in mind for a career path. Rather than parties with the fashion gliterrari, she now got to experience leftover spaghetti and meatballs with parents. After months of poking and prodding, Erica was diagnosed with myofascial pain resulting from a genetic disorder, Ehler-Danlos Syndrome.

The worst was those nights when I had to witness Erica literally writhing in pain for hours. At that point, no medication or therapy offered any significant relief. This was, to me, a parent’s worst nightmare. Yes, I know her condition was not life-threatening. She is not confined to a wheelchair and her future still looks bright. These thoughts, though, provided little solace when she was coping with an undiagnosed condition over which we had little control.

As parents, Erica’s condition has provided us with some hard learned life lessons. We had to both learn how to be supportive and to cope with our collective changed circumstances. We wished we could have been more enlightened earlier in the process. In that vein, I would like to share what we learned as caregivers, with full recognition that there are exceptions to everything and what I suggest may not be applicable to all. The additional caveat is that Erica had resources that many lacked, such as generally supportive parents and good insurance. With that said, here is just a short list of what we learned.

1. The Pain is Real.

She’s not faking it. She’s not being dramatic. She’s not simply trying to get attention. She does want to get better. And, most important, it’s not all in her head.

2. Distraction Can be the Best Pain Relief

Most traditional pain medications, at best, did nothing, or at worst, had significant side effects that made Erica feel even worse. What did seem to provide some relief was just sitting with her and watching TV or looking at stupid videos on the internet. Netflix and Amazon were invaluable.

3. The Illness does not Define the Person

Erica desperately did not want to be known as the “chronic pain person.”The problem is that when dealing with a medical issue as all-encompassing as what she was experiencing, it is easy to let to her condition subsume conversation on any other topics. It dominated every interaction, including interactions between my wife and myself. We eventually learned to remind ourselves that we were the same individuals we were before the onset of Erica’s illness, with the same interests and eccentricities. The three of us made a conscious decision to talk about topics other than Erica’s affliction. My wife and I actually would agree not to talk about anything related to Erica’s condition while we went on walks or had dinners out.

4. Avoid Caregiver Fatigue

Recognize your limitations.There is no doubt that caregiving can be more than a full-time job. You can not always take a break when you would like, but you must take one when you can. Stress reduces your effectiveness as a caregiver. In addition, the unspoken truth is that stress can lead to resentment, which in turn leads to guilt. Certainly having a co-caregiver helps.Try to learn to recognize the onset of caregiver fatigue and take the necessary steps. It may be an afternoon nap or time away. Erica and I learned to recognize when my wife was bordering on stress overload. At those times we simply sent her away for the weekend. I recognize this may not be an option for everyone, but you must learn what is realistic and doable for you, And don’t feel guilty about taking a break. It will benefit everyone.

5. Nurture Your own Relationships

Caring for a child with a chronic condition can stress a relationship with a partner. When possible take time off together. As much as you feel to the contrary, you don’t have to include your child in every activity.

6. Timing is Everything

While your child is in the midst of a serious pain episode is not the time to try to resolve serious issues. It is not beneficial to discuss treatment options, simmering personal disputes, or future life choices in the midst of severe pain. When your child is suffering, her focus is not what job options she should pursue. Someone in distress does not have the desire, ability or inclination to deal with major issues. We have found that discussions on “big” issues were consistently unproductive at these times.

7. Adjust Expectations

Your child may not be able to do everything you think she should. Forcing someone to do something when they’re experiencing significant pain does not constitute good parental discipline. It merely exacerbates the pain. While there may have been times that I felt like I was being manipulated, I eventually that learned providing reasonable assistance was not synonymous with coddling. Instead, it helped Erica’s recovery and generally enabled her to take on more activity at a later time. While I am disappointed when Erica has to cancel a gym session, I realized that she is the best judge of her body. She has learned the hard way what she can do and when she can do it without adverse effects.

Thursday, July 16, 2015

Travel Tips For Chronic Pain I've Come Across Prepping for London

I'm starting to compile a large list of "hacks" for traveling/moving abroad with chronic pain. More will be added to this list, but again, after exhausting Google, I have found no go-to site with a list how to make traveling easier.

Here is a compiled list of a ideas.


  • Plan ahead: don't try to do everything on your trip, get plenty of rest a week or so ahead of time, prioritize the things you want to see, include time for rest each day and the first few days to combat jet lag
  • Talk to your doctor: I had discussed with my doctor writing several lists (one for my disability advisor, one to receive a "disability room" at my housing, one for my flight, one for loans and one for the other specialists I will have there). Specifically for your letter to new specialists, it is a good idea for your doctor to detail your current meds, your allergies (especially drug related allergies) and a basic synopsis of your diagnoses and prognoses.
  • Buy travel insurance: This is a given. If you are too sick or in too big a flare to go, things always need to be cancelled every so often and you'll want your money back when it does. (This may also require a note from your doctor.) 
  • Don't change meds and/or therapies a few weeks before leaving.


  • When booking your flight, get accommodations. Just do it. It'll make your life easier. The key is to spend as little energy as possible on your flight so you can enjoy your vacation/new place of residence. Get wheelchair service in the airport--you will be able to skip lines to board, check in, etc. Ask for aisle bulk head seating (the seats in the front of each class with more leg room). See if they can give you an upgrade--I got one for business class. 

  • Medication: ALL medication you are bringing should be packed in a carry on. If you are going for 15 months like I am, you will most likely need a carry for just your drugs. At this point, you can use your doctor's note and call the airline's medical clearance to get more carry ons and check in bags for medical equipment, drugs, etc. Get all your drugs from a place like CVS Caremark that can give you all of them in advance. According to British Airways, customers and TSA will not have problems with me bringing a carry on bag of drugs and equipment like a TENS-Unit (as long as I also have the manual). 
  • Take breaks to walk up and down the aisles so you're not sitting constantly. Lay on the floor if need be. (I asked.) 

  • Get a direct flight. Seriously, going budget is not worth the pain. Avoid layovers. 
  • Drink lots of water! Bring an empty water bottle to fill up once you are at your gate. 
  • Try to reduce stimulation and bring comfort items. Noise canceling headphones are a godsend. Sunglasses, a blanket, a really nice neck pillow, etc. 
  • Pre-medicate before your flight. You will be happy you came prepared!
  • Dress comfy and wear lots of layers.
  • Give yourself LOTS of extra time at the airport (added breaks).


  • Start early. Since you need to rest the week or so before leaving, I have started slowly packing now, a month or so before my vacation. I know this may sound silly to some, but it makes me feel less stressed, since I am leaving for a year and still need to get a lot of things.
  • Make a giant list and check things off as you go through so you don't forget. 
  • If you can afford to, bring creature comforts from home like a good pillow, equipment used for pain management, splints, circulation socks,pain salve (depending on size), icy hot packs, eye mask, etc. 

  • Find all the things you'll need around you, who and what delivers, and how much. I know all the closest grocery stores, dry cleaners, pharmacies, hospitals, etc. I've also looked up where to find caretakers if I would ever need them.
  • Get all your new doctors' appointments set up before you go so you can get settled right when you get there. 

  • In London, there is Amazon UK Prime. I plan on ordering all my medical equipment to arrive perfectly the day after I move in so it's less work I have to do later. (I've made a Pinterest secret board with links to all the things I'll need to buy when I move.) 

Like I said, I haven't done the trip yet so I will change/add/delete accordingly as time goes on. 

Tuesday, July 14, 2015

15 Things No One Tells You About Chronic Pain As A 20-Something

Syndicated from Huffington Post.

This was originally published on The Mighty, a site that finds the strength, joy and beauty in disability and disease.

1. Sometimes you feel like a lab rat/medical experiment gone awry.

"House M.D." doesn't even begin to cover all the weird treatments and experiments you've undergone to aid your health. Your "medical team" becomes the people you know and hear from most.

2. The idea of going out and maintaining a normal 20-something social life is laughable.

Think you're going out for a few drinks tonight? Oh wait, you can't because of your specific diet, medications you're on, etc. Friends may be disappointed. You may be bored (really bored). Netflix will be your bestie, don't worry.

3. Some people are really open and kind about your chronic pain. Some are just the worst.
Explaining your chronic illness truly becomes an art. You read their body language and take their past experience and personality into consideration before divulging your illness. Then, usually, it's a game of 21 questions.

4. There are good days and bad days.

Good days and bad days depend on a lot of the perpetuating factors you may have. Some days, I'm good enough to take a day trip to go shopping and other days, showering is a legitimate goal if you can make it out of bed.

5. You become your own doctor/pharmacist/advocate.

Doctors can make mistakes sometimes. I double-check all of the interactions of my drugs when I'm prescribed new drugs to make sure I'm not going to accidentally kill myself. Do your research. Many of the things that work for me now consisted of a series of trial-and-error combinations of medicine and therapies.

6. With chronic pain comes new and different priorities and limitations.

The way I best describe any given day is that my life is like an iPhone battery, and I'm on energy-saving mode. Everything from cooking, to getting dressed, to going out to eat, to working take a little (or a lot) of battery. Some things I used to love to do are just not worth it anymore.

7. Chronic pain is a full-time job.

I'm not kidding. If I could show you my calendar, between all my specialists, I have on average about four doctor's appointments weekly. Half of them are usually out of town -- meaning they're out of state. I also, on a monthly basis, get acupuncture, chiropractic work, Reiki, massage, trigger point injections and see a personal trainer (who specializes in chronic pain) twice a week to weight train. If something pops up out of nowhere and everything needs to be rescheduled, I'm on the phone for sometimes hours rearranging appointments.

8. Certain foods become your best friends.

When my pain was at its worst about a year ago and I had no medication to help my pain, all that could comfort me was mashed potatoes and ice cream. Turns out, mashed potatoes and ice cream are not a cute look for my body and with my physical limitations, cooking healthy food for myself and exercising is much more challenging.

9. Sleep, above all, is key.

Seriously, if I get no sleep the night before, my whole day and body goes to sh**. Getting enough sleep is worth it.

10. Maintaining a love life? LOL.

I haven't even begun to crack the chronic pain code on this one. I have no answers here.

11. Get a pain guru.

Having someone close who's been through the ringer with everything you're dealing with is so helpful. Anytime I call her frustrated about something, she has five to 10 different solutions I never thought of. My pain guru happens to breed puppies. Speaking of which, puppies are just about the best therapy you can have, so get those, too. Nothing feels better than lying in a pile of puppies.

12. You will have haters.

Send donations in their honor to your favorite chronic pain charity.

13. A few people will be inspired by you, a few people may feel too sad to even be around you and a few people may slit your tires when they see you in handicapped parking with a handicapped tag.

The tire thing didn't personally happen to me, but it did happen to someone I know. Don't forget, just because you can't see an illness doesn't mean it's not there! Don't be those people.

14. Silver lining: you get to watch every show you ever missed out on and try a lot of hobbies you never thought you'd have time for.

Hobbies I've started since medical leave: learning French on Rosetta Stone, writing, flower arranging, pottery, painting/sketching, jewelry design, puppy socializing, volunteering at a pit bull rescue, cooking, baking and reading.

15. Chronic pain has forced me to see the world in a different way. It has forced me to embrace all of my vulnerabilities and genuinely be a better person. Ironically, because of my chronic pain, I am now finally able to do exactly what I always dreamed of.

Wednesday, July 1, 2015

Now Officially A HuffPost Blogger!

HuffPost has syndicated my first article via Please read and share!

Since I was invited to blog for HuffPost, I am able to post whatever and whenever I want. I have plenty of things I would like to write about for them, as well as rewriting old blog posts, but I would also like to use this is a tool to be a voice for other chronic pain sufferers as well. With pain, many voices are not heard or understood.

That being said, if anyone out there with chronic pain has any ideas or suggestions they would like me to write about, please let me know. You can email me under "contact" with the email listed or in the comment section. I've met so many people who have had pain much worse and longer than I have and am always looking for insight.

Working on a big list right now! I have a few other pieces I'm working on for different sites now (plus recovering from this horrible GI virus I still have) but I will come back to this and focus my efforts on HuffPost. (I also have no idea when I became this busy WRITING of all things.)

I feel very humbled to have come this far, to be honest. This blog was just an idea for a long time that took a lot of balls for me to work up the nerve and write. I was honestly expecting mixed reviews. (I know how the internet works--there are always critics.) But I have been overwhelmed with the love and support I've received from the little pipe hole of a project I started a year ago. I'm looking forward to see where this takes me and, more than anything, happy to see that many of you really find it helpful and use it as a resource.

Thanks guys!