Finding the perfect ankle brace...

...is 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.

MEDIUM ASO Ankle Stabilizing Orthosis Brace

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. 

HOT Bauerfeind Malleotrain Plus Ankle Support

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.) 

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:

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.

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.

GENERAL:

• 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.

FLYING:

• 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).

PACKING: 

• 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. 

ONCE YOU'RE THERE (IF YOU'RE MOVING):

• 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. 

What to Pack When You Need to Go to the ER

Last week, I had to go to the ER. I hate the ER. It is always a last resort. That day I woke up with a high fever, nausea, bad GI problems, dizziness, generally feeling like I got hit by three buses, etc. I ended up having probably the worst possible version of whatever shitty virus is going around + my general pain.

Dad: "You look dead. Give me a thumbs up."

I couldn't hold down food, liquids or drugs, so my dad took me to the ER because I was so dehydrated I could barely move.  It took forever for them to bring me back after a lot of drama I caused in the waiting room yelling things like "poor care" and "I need to speak the administration immediately!" in my half comatose, angry state. Obviously the first thing they tried to do was get an IV in me, which seemed like an impossible feat. I think 6-7 nurses AND doctors each tried about 3-4 different times in all different spots, all with their own dumb theories about how to do it. One doctor even used a ultrasound to find veins and ironically, he was the fucking worst one.

The night I got home.

The next day. I've looked like a heroin addict for approximately a week.

I was in a bed in the hallway for several hours and eventually got moved to a bedroom and was able to leave late that night.

Below are a mixture of things I brought and things I wish I had brought. Because, damn, when better to be prepared, right?

• Noise Cancelling Headphones - You will THANK me for this later. If you're stuck in the hallway with a headache for 1+ hours, all you hear is constant beeping, people screaming, doctors yelling. My body is sensitive to that shit. Even if you don't listen to music. Put 'em on.
  
• Medical Wallet ID Card - I need to make one. I had been waiting until I moved to London so I wouldn't have to change all of my information 20,000 times before I moved, assuming I wouldn't have to go to the ER before I moved. Silly me.  Make sure it has your doctor's phone numbers, a list of current meds you're on, diagnoses, emergency contacts, allergies to things, etc. This is crucial, especially if you're too out of it to explain. You can even print them online and laminate them together. 
  
• Packet of Medical Info including doctor's notes approving the medication you're on (especially if you're on narcotics), a description of diagnoses and how you're managing them, and a list of all the drugs you've had bad reactions to
• Change of clothes - In the case you have to stay the night, or something gets vomited on, blood on, etc. Better to have them.
• Pillow and travel blanket- ER people tend to forget you exist sometimes. Bring your own stuff. From my fever, I had bad chills and had to wait FOREVER to get a blanket. Brought my own pillow, which THANK GOD, but it did get covered in blood. Damn you ultra sound guy.
• Toiletries, especially Listerine- if you puke, you will wish you could brush your teeth, I would also throw in a brush, some hair ties, tooth brush and tooth paste, some dry shampoo, etc. 
• Drugs while you wait- You may have to wait awhile. In the mean, I had brought some Ibuprofen for my fever and headache, Zofran for the nausea and my typical pill box of fun pain meds
• Phone and whatever other chargers you need
• Snacks- even if you can't eat, your poor, miserable family members will get hungry 
• iPad- you need to entertain yourself somehow
• Squeeze Pig (or just something to squeeze)- I use my squeeze pig for injections but I could've totally used him when they were searching for veins for 2 hours. 
  
• Wet wipes- Guess who left the hospital covered in blood. We can't all look like animals. 
• Cool Towel - You wet this thing and snap it, and it stays cool for HOURS. Perfect for fevers. I wish I had mine. 
  
• Eye Mask - Zone out, especially if you're sleeping over. (This is my new one.)
  

Let's hope this never happens again. Ever.