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.) 

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.

My Shitty Experience With Taking Drugs for Pain (As Told Through Chronic Illness Cat Memes)

Over the last two years, I've made it pretty clear that I have a love/hate (pretty much all hate and no love) relationship with drugs.

Not sure why my body hates me, but like everything else, it's something I'm slowly getting to the bottom of.

Just in the last year and a half, these most of the drugs I've tried. (Please note under any normal circumstance would I ever be posting my drug medical history, but a lot of people with fibromyalgia/EDS/MPS/MCAD --everything I have-- usually has sensitivities and intolerances to a lot of things.)

Drugs with an * behind them show that I had side effects. Drugs with multiple * mean I probably thought I was dying. 

Side note: I was dumb and didn't write down what they were. 

If they are on the list without an * it means they didn't give me side effects but didn't help.

*Note: I know some of these are not in the right categories. I took this right from the notes in my phone.

Anti inflammatory:
Mobic
Celebrex
Flector patch
Naproxen

Muscle relaxers:
Soma
Flexeril
Robaxin
Tramadol*
Tizanidine**
Neurontin/gabapentin*

Benzo's:
Valium
Xanax
Ativan* tolerance
Klonopin

Sleeping pills:
Lunesta *
Ambien - 10 mg with phenergan 50 mg
Sonata*

Anti nausea:
Phenergan- must eat with food, 50 mg in combo with ambien 10 mg

Pain killers:
Vicodin *****
Tramadol*****
Percocet**** 
Hydramorphone***

Cymbalta***
OxyContin****
Nucynta ****
Opana****

Morphine****

Antidepressants:
Wellbutrin***
Zoloft *
Lexapro *
Amiytriptyline****
Lyrica***
Prozac *
Doxepin****

Misc:
Tylenol
Advil
Aleve
Ibuprofen
Medrol dosepak
Capsaicin cream
Benedryl
Melatonin

So, doctor friends/family (or anyone with common sense), you can start see the relationship of general categories that weren't working my favor. I know there are more drugs to add, I just can't even remember what they are. I have irrational fears about going to the ER because doctors will probably just give me painkillers anyway. My PCP has actually told me when I need to go to the ER I shouldn't go to the ER.

As I'm sure you can sense from this list, I don't really have much to take in the way of pain at all. Especially break through pain. These are the questions I am asked the most about. The only things I can take and try to take as little as possible are Toradol (an intense NSAID that rots in your GI tract--I get LECTURES FROM EVERYONE about taking this--you're not supposed to use it for longer than 5 days after surgery), Ativan (which I previously had a mild addiction/withdrawal from) and Robaxin. The last two I take in conjunction with Ibuprofen. Most of the time, these kind of take the edge of. 

With really bad pain, nothing does. And trust me, there have been times in nights of desperation with really bad that I'm almost desperate enough to try more painkillers but ultimately logic strikes and pass on it. I end up just trying to drug myself enough to pass out. This seems like the best solution (other than throwing myself off a bridge or trying to convince someone to take a hammer to my head).

I have a whole pharmacy of drugs at my house. 

I have a several giant boxes of all the drugs I've tried. Slowly I'm starting to get rid of all of them. Or do this. (Because I think it'd be hilarious.)

I also use heat/cold, China Gel, TENS unit, compression wear, a custom pain salve made from essential oils, trigger point/foam rollers, my U shape body pillow, epsom salt baths, food (hence the weight gain), etc. (Almost all these things can be found through various posts with links on my site.)

You may be asking yourself "Erica, were painkillers really that bad?" and my answer to that would be "Yes, yes they were." Here's a few things that would happen when I took pain killers or antidepressants:

1. extreme nausea 
2. perpetual vomiting 
3. throat closing/trouble breathing
4. rashes
5. hives
6. rapid heart beat
7. extreme dizziness (to the point that I couldn't stand)
8. feel like bugs were crawling all over me
9. ridiculously bad IBS
10. more spasms
11. dry mouth
12. blurred vision
13. headaches
14. night sweats/nightmares

When I went to see my geneticist at GBMC, we could tell some of these were allergic reactions and some were something else, so she ordered me a Genelex Youscript Test. It's a pricey one, but luckily my insurance covered it. It's a swab cheek test that analyzes how well you metabolize certain drugs. It's very confusing to read, even for most doctors but a lot of the reps there are very good at explaining to the least science-y person ever. But, no surprise, I was an "intermediate metabolizer"/slow metabolizer for the phenotype that includes many painkillers and antidepressants. According to the Youscript site, this is the definition of an intermediate metabolizer:

• Intermediate Metabolizer. An intermediate-metabolizing enzyme is considered to be less active. It doesn’t break down a drug as completely as a normal metabolizer, which means you might require a lower dose. A lower dose prevents the unmetabolized drug from building up in your body and possibly causing side effects.
• Poor Metabolizer. A poor-metabolizing enzyme has very low activity. It is possible to have side effects even with a very low drug dose, because the enzyme is very slow to break down the drug.

Generally, once most doctors find out you're an intermediate metabolizer  (if they even know WTF it means) they will never prescribe any drugs that fall into that category. It's hard based off the information they give you form the results to figure out what are intermediate metabolizers and what aren't. The service from for Youscript told me with my results, if I took something that was an intermediate metabolizer for me over a decent period of time, most of the drug would stay in my system since it wouldn't be digested and become toxic to me, even resulting a potential stroke. Now I have software by Youscript where I can plug in all my meds I'm on with the meds I want to try and see if there are interactions or if they a bad metabolizer for me. It's getting to be a little too much fun for me. 

Having the kind of pain I have with no meds is really hard sometimes. I have to go the "natural" way out of force. Most people that have the same diagnosis and pain I have are on SERIOUS meds (like morphine 24/7). If I had drugs that worked my days would be a lot less limited and I wouldn't have nearly as many sleeping problems if I had something to help my pain at night. Then, I wouldn't need to be on Ambien. I'm at the point where I've pretty much tried everything and not much is left except medical marijuana, which although I am not a smoker, I would try it if it helped. I am willing to try anything as long as it doesn't kill me. 

I am also looking into a Butrans patch. It is an opiate but it would be a patch so it would enter through skin systemically. I wouldn't be *thrilled* about being in pain killers 24/7 like I would with this patch, but I really think, if it actually helps, it would improve my quality of life. I don't really have much of one right now, so I'm still really trying. 

One thing I am very excited about is a product called Quell I ordered. It is a wearable pain relief system that you wear around the top of your calf. It uses some kind of neurotechnology to send signals to the brain through electric waves to change your pain path. There's a chance it wouldn't work, but it's worth trying. It can even tell when you're sleeping and you can adjust accordingly with a compatible iPhone app. Hopefully it'll arrive in June! 

PS. I found this "chronic pain workout" and I really enjoyed it, so I am sharing it here.