Strength is my Weakness

I don’t know if you can tell by this blog, but I am often referred to by others as “feisty.”

I would blame it on the hair, as my husband loves to do, but alas, it’s fake. I was born this way. And thank God that I was, because even though my chutzpah has gotten me into trouble once or thrice, or fifty times, it has been the driving force behind my undying faith and passion to find answers to the question that hung over my head for most of my life: what is wrong with me? Like the Little Engine That Could, I just kept chugging up the mountain, seeking answers, rejecting the ones that didn’t make sense, and never lost hope that I would find an explanation for what ailed me. Why? I don’t know – it’s just who I am.

Of course, I am more than just a medical diagnosis, and the obstacles I have faced in my life have ranged: interpersonal, financial, spiritual, legal, etc. and the same personality has come swinging out of the corner every time to fight my battles. I have always been a warrior who fights things head on – not an ostrich who puts her head in the sand. And I consider this to be an advantage…most of the time. This struck me the other day, when someone I met said, “Your health problems kind of remind me of my relative, but she is so whiny about everything. I always thought she was just making it up.” We all know those people, and it can be hard to sympathize with them after a while, right? They are draining! “She may be whiny about everything,” I said. “And she could still not be making this up.” Disease doesn’t care what your personality is – it strikes regardless of whether you have the coping skills or not. But my personality isn’t “good,” and hers isn’t “bad.” I have stopped trying to put things into “black & white” answers, and find, rather, that just about everything has it shades of gray.

Hard to do, but an excellent reminder...

I have struggled for years to not be seen as “whiny.” I take pride in my strength and resilience, preferring to be known as “stoic,” rather than “sensitive” when it comes to my medical issues. And yet, I am coming to learn that there has to be a balance, just like most things. Too much strength, resilience and stoicism can be overbearing, isolating, and difficult to model, especially when I have two little ones watching my every move. 

We have a blue tooth in our car, and sometimes my children are privy to phone conversations of my choosing. I happen to be dealing with an elderly relative who is in end of life stages, and as the ex nurse in the family, I get consulted on certain matters. I was fired up about some issue with the nursing home transfer, and I got off the phone, and my daughter said, “Wow, Mom. The family is so lucky to have you. You are one of those people that knows how to get things done.” A year ago, I would have swelled with pride and thanked her, but my heart sank when I heard this. A Type A personality in the making…

     “Do you know what I have learned lately, hon, that has changed my life for the better?”

     “What, Mom?”

     “If I don’t do these things, someone else will. It may not be the way I would do it, and that’s OK.”

You see, what I am not good at getting done is resting. And by the way, maybe that whiny girl is a lot better at resting and recharging than I am! I had to take a few sick days last week, and it is one of the hardest things for me to do nothing all day. But I need to do that: if anything, I need my kids to see that strength does not mean sacrificing your health and well-being. (Duh! We’re trying to send the opposite message around here…)

So if that means I have a TV and recliner marathon once in a while, then so be it...

If the shoe fits...

I wear these in my dreams

I am grateful to all of you collagen-normal people who hang on with me, supporting my blog and getting the word out to those of us who are collagen-challenged. I have tried to pick subjects with Universal appeal, and this one is no exception. I'm the canary in the mine: what kills me, will eventually hurt you.

One of the first problems I had as a young adult, misdiagnosed with “fibromyalgia,” was debilitating back pain. I was a 20 year old Nursing student, and I could barely make it through clinicals. I went to a pain specialist, who told me there was no medication he could give me that would help my chronic pain, not even narcotics. I would have to just learn to live with it (This has profoundly shaped my life. We’re going to talk about his later on…). He noted my very tight hamstrings, and gave me a TENS unit for pain control during my hospital shifts, which was really effective, and helped me move normally. But that was it: no referral to PT, no mention of lumbar support, or abdominal weakness, and not one mention of the shoes I was wearing. How far I have come since then.

80% of Americans will suffer from back pain in their life, and according to most sources, the causes are poor posture, lack of exercise, excessive sitting, poor diet, and bad footwear. 

Which one are you?

The reason why I am here with you today, is Jennifer, my physical therapist, met me at a party. I was wearing ridiculous footwear (Earth shoes. Don’t buy them). I was sent to a “healthy foot store” by a chiropractor, and the sales people talked me into uncomfortable, expensive sandals that were not at all appropriate for my suspected condition. Jen asked me why I was wearing them, and the rest is herstory…But until then, I had been living in UGGS and flip flops, with the occasional heels for special occasions. And why wouldn’t I? I had been to countless specialists for 20 years: pain doctors, physical therapists, chiropractors, massage therapists, internists, orthopedists, and not one of them ever asked me what I was wearing on my feet or taught me what to wear. But even if they had, I’m not sure I would have listened. I’m a funky girl, and the “orthopedic shoes” of yore would have turned me off immediately. Fashion was always very important to me. It wasn’t until Motherhood sucked the life out of me, and I spent five years in yoga pants, that I had lost so much of my personal identity, I was ready to move into a look that was more responsible and fitting of my new, uh, lifestyle.

But have no fear! In many ways Fashion has gotten more responsible, and we have much better choices now. I am happy to report that I have still got it (snap!). I am on a mission to find funky, healthy shoes and accessories, because I have learned that limping for three days is not attractive. I have also discovered that by doing the things I need to do to take care of my body, I look better than I did in my 20s. Eating right keeps me thin. Doing my ab exercises, which strengthens my back, gives me a tight, flat stomach. I may be the weirdo with the skull fanny pack, but I look pretty damn good in a bikini at age 41!

Ditch the UGGS: try these instead

True health is true beauty, and that’s what I never knew back then. I now see the fashionistas shuffling through the mall in their UGGS and flip flops, with their sagging ankles, and cankles (really, those shoes do nothing for our legs, ladies), and I cringe not only from an aesthetic point of view, but also as the Ghost of Chiropractic Future, knowing what is in store for them.

Do you have foot pain? Jen says foot and ankle pain of any kind is not normal, not even when we get out of bed in the morning. If you change your shoes to  a "healthier" version and continue to have pain, you may need to use an orthotic or insert. Try an over the counter insert first, Super Feet or Lynco which also has children's sizes (you want to get one with a posted heel and arch support). If pain continues, you might need a custom orthotic made, but not all custom orthotics are created equal, she cautions. It depends on the lab where they are created. Want to know more about that? Ask her!

So here is the Malleable Mom’s guide to picking good footwear, based on my research, and awesome medical team. (Men, these pictures yell at women for their fashion choices, but the rules apply to your shoes too...)

• Has arch support built in
• Cannot easily be bent in half or twisted side to side
• Holds your heel (not a slip on)

  

  This flip flop won't flop

• Could snugly hold an orthotic (not a slipper shoe where it would slide around inside)
• Absorbs shock: doesn't have a flat or flimsy sole
• Bends at the ball of your foot only

If you want to wear a heel, choose a platform so the slops of the heel is not severe. If you have a high arch, and you naturally pronate (feet turn in), a wege shoe will correct you. But, wear it for short periods of time, like an evening out, not all day, or for times when you will do a lot of walking. For example, to replace my beloved gold sparkly heels, I got these:

They are just as eye catching, but I don't limp the next day. And I get more compliments from these shoes, especially from men, than any other pair I have owned!   

So go through your closet, run the test on what you own, and then use this as an excuse to go shopping keeping the new rules in mind. Let's teach our daughters that their health is more important than fashion trends, and that they can still look good and feel good. 

Get these from Clarks

Why I Heart Kinesio Tape

Two important takeaways in boosting your child’s self image in the face of chronic medical issues: watch TV and lie.

OK, hear me out.

I lost my dignity a long time ago. I think it was somewhere between being naked in a room of people while I suffered 16-33 hours of pain through two childbirths, walking around for the next 5 years with “questionable” white stains all over my clothes (Spit up! It was spit up…), and then running the gamut of public parenting (I see the judgmental stares…I know they are cute, but they still deserved to get yelled at…). So, when being a “responsible” connective tissue patient meant making even more changes to my life, I was ready. Such as, wearing a fanny pack so I don’t put any pressure on my traps by carrying a purse. Done. I rock it (see skull fanny). Or, wearing flat shoes so I can wear orthotics. Two words: ankle boots. I pull around a wheeley-bag (leopard print), sport circular hickeys from cupping sessions (thanks, Gwenyth, just…stop talking, OK?)

The Big G "Consciously Uncoupling" with reality

My TENS unit is disguised by most cardigans, and when I wear my black wrist brace, I wear a long black sleeved shirt so it looks like an “arm warmer.” Making EDS fashionable has become my personal mission.

I have to admit, that I have been stumped by the phenomenon that is Kinesio tape. If you’re unfamiliar with this product, it is simply a miracle. I don’t know how it works, but here is an awesome article about it. What I do know from my own experience, is that for the myofascial pain of tendonitis, trigger points and other such pains that come with the EDS territory, taping can bring near complete relief in minutes. My children love it, and rather than feeling helpless when they hurt, I can give them a giant muscle band-aid. Once you learn how to put it on, it’s easy to DIY, and it stays on for days, which is great for your paycheck…not always for your wardrobe. I have walked out of the house more than once in a Maxi dress for a night out only to realize that I had bright blue tape on my neck and shoulders. I tried the nude one for a while, but sadly, it stinks. I have crowd sourced my PT office, and the color that lasts the longest is blue, so set your expectations now.

My daughter did not like wearing her tape in public that first time. It was summer, and we were at the pool. Lots of people asked her about it, and she decided that price was too high. One night after that, we were out ordering dinner, and the cashier noticed the tape on my arms. “Cool,” he said. “What sport do you play?” At first I wasn’t sure what he was talking about. “That stuff – I’ve seen it on TV during the Olympics, right? What’s your sport?” Without missing a beat I said, “Beach volleyball.” My kids smirked behind me. “Oh yeah? That’s awesome. I could tell – you look like an athlete. Well, here’s your food.” I look like an athlete? Nice!

Me, right before we creamed Germany in 2012

I’m not sure what lesson I taught them, but after that, she wasn’t as embarrassed to be seen in her tape. Maybe the lesson was that not everyone is looking to hear our sob story, and that she is not obligated to tell it – that it’s OK to go with the white lie from time to time, especially when it helps us focus on the best part of ourselves. My kids are athletic. They will be able to truthfully talk about their own sports: ballet, soccer, horseback riding, hip hop, and wherever else their heart takes them. Even if they were taped from just waking up in pain, they can choose to focus on their inner Olympian. 

I too had been athletic when I was growing up: dancing, swimming, yoga, but not knowing that I have EDS for so long has caused me a lot of injury.  They won’t be like me, I’m doing everything I can to make sure of it. I think life has been better for my children’s generation that it was for mine: back then we picked on the fat kid, the asthmatics, the four-eyes, and God help any child who had to use adaptive equipment: social suicide. Now much of the anti-bullying rhetoric is working. My children have sported glasses, retainers and braces on their teeth, back support pads, orthotics, keyboards for writing, Kinesio tape, ice packs, ankle, knee, and wrist braces, and not one kid has ever teased them for being “weird.” They will grow up in a world where people are learning how to take better care of their body, even if it means you look a little silly sometimes.

the Worst Tooth Fairy Ever

I am a “good enough parent,” but I am a really crappy tooth fairy. 

I forgot, again, last night. I think I have remembered once. Thank god it’s the older girl, and she knows it’s me, and she knows that I’ve had a lot on my mind. Oh, who am I kidding? She knows that I have no short-term memory anymore. I have been on Topamax for two years for headache prevention, and my medical friends jokingly refer to this as “dope-amax” because it makes you “stoopid.” I would have had to put a post-it on my bedroom door, and I didn’t.

But judging from some of the Facebook feeds I have seen from all of the other negligent fairies, I know it’s not just the medicine that affects me: it’s parenthood. It is freakin’ complicated, and our brains are on overload. When I was first pregnant and working full-time as a nurse, the memory dullness was just starting to affect me on the job. One of the older nurses said, “Oh honey, that’s just placenta brain. You’ll get used it.”

     “When does it go away?”

     “It doesn’t.”

I don’t think it has anything to do with chemistry, rather, it has to do with the sheer amount of information that we need to cram into our brains now that we have ourselves and dependent people to manage. With each added dependent, it gets worse.  Medical and dental appointments, field trip forms, haircuts, favorite flavors of chips, favorite colors, birthday parties, science fair projects, the list goes on and on. Add to that, reminders to keep good posture, drink enough fluids, not twist their arms around in their sockets, wear their orthotics, do their PT, take collagen supplements, wash their face and use moisturizer, floss, and 1,000 other things that we have to say and do to get these creatures socially acceptable by the time they are 18, and you’re fried.

When I first started taking the horrible drug, (can you believe some people take this for weight loss?) Life was very, very rough. When Mommy goes down, everybody goes down with her. I was a zombie for months, and I had to develop external coping skills really fast. The first thing I did was use my smart phone for everything: I used my calendar, and set reminders and alarms for all appointments. My iPhone screams at me all day long now. I also use a lot of physical reminders: there are post-its all around, and I painted a giant blackboard wall in my kitchen that my children call “Mommy’s brain.”

If we’re out of food, “put it on the wall.” If it's not on the wall, it doesn't happen. (Green tip: take a photo of your shopping list so you don't have to write it down). I made sure to reserve a section of the wall that I call “Caught being Awesome” where I note things they did well, because many days I feel like all I do is nag and yell (but none of you know what that’s like, right?)

In spite of all of these coping mechanisms, teeth are left under pillows. Forms are not signed. Appointments are missed. Relatives' birthdays are missed (that was fun…) I have had to learn to do two very important things:  

1. Learn how to give a really good apology. If you don’t know how to do this, there is actually a formula. In The Last Lecture, Randy Pausch describes “proper apologies have three parts: 1) What I did was wrong. 2) I’m sorry that I hurt you. 3) How do I make it better? It’s the third part that people tend to forget…. Apologize when you mess up and focus on other people, not on yourself.” I make my kids give good apologies every time – as Randy puts it, "a bad apology is like rubbing salt in the wound." And I model it by giving good apologies to them as fast as I can. Learning humility has been a hard, but rewarding, lesson for me.

2. Know that the mess ups are probably making your kids better people. This goes beyond forgiving yourself for messing up: it means embracing the mistakes as a necessary part of your kid’s healthy development. That is what it means to be a “good enough parent” and not a “perfect parent.” I remember the first time I really lost it with my first child, because she had pushed my buttons and I yelled at her. I cried to my friend, and he said, "It's better that she learn boundaries from the person who loves her more than anyone in the world, than from a world that doesn't love her at all." So, if you’re doing really well, and you have it all together, go screw up sometimes. It’s good for them.

Pain: it's NO joke

My daughter looks over my shoulder at the monitor. “What does ‘mal...malay...’

     “Mal-ee-able.”

     “Yes. What does that mean?”

     “Look it up.” I give myself a mental high five for not enabling her.

     “mal·le·a·ble adjective 1. capable of being extended or shaped by hammering or by pressure from rollers...” Woah! Not what I was going for…

     ”Try the next one, hon.”

     "2. capable of being altered or controlled by outside forces..."

     “Flexible. Malleable means flexible.” Sheesh. Thanks, for your help Webster’s…

When I was naming this blog, I gravitated to something that sounded comic-bookish. Sadly, Elastigirl was already taken, and I don’t feel like paying royalties to Disney. My friend put it perfectly: “When I saw your blog, I immediately thought of you as some Super Hero Mom.” Funny, that’s how I see me (Cue fog machine! Cue trumpet fanfare!…) Sadly, I never seem to have any cool super powers. Last night, driving home with a bad headache, for example, I would have been “Sensitive Girl: able to hear the sound of her children breathing too loudly in the back seat! Reduced to tears by the setting sun burning through her corneas! Able to sense the vibration of her son kicking her daughter’s chair like the roll of thunder!” And then, I become the villain. (Cue sinister laugh...)

When I’m in that much pain, I have no energy or patience to handle anything. This is something that people don’t always understand about chronic pain. Someone may have just had an accident, or a surgery, and be in 8-10 out of 10 pain for a given amount of time: a few weeks, or months even. But when someone has been in 5-7 out of 10 pain for years, it may seem like less pain on paper, but your energy stores are used up, and you have nothing left to handle it. The experience of living with it is worse. I have had periods of good energy before, with small periods of bad pain in between, and those times are not as bad as long periods of moderate pain that wipe me out.

Last night was rough, but one of many such nights that we have experienced over the past three years. My husband is travelling, so I’m on my own. We were out of the house, waiting for my daughter during ballet. My son also had a headache, and he gets really loud and whiny and clingy when he has one. Aaaaah – all I want to do is get.noise.away.from.me. He doesn't have the papers that he needs to do his homework. We get home and I realize that he forgot his backpack, with my iPad in it, at the cafe in the ballet school. Blinding pain. Can’t.think. My son looks miserable. Breathe. Take one step. I call my friend who owns the cafe. It’s there and safe: I’ll get it tomorrow - after I have had a full night’s rest. I hug him. “These things happen,” I remember to say. I have to remind myself to say and do kind things when I am like this, or I will just look and act mean and miserable.

His medicine kicks in faster than mine, so he calms down, and I pull him to my lap, and give him the quiet cuddling he has wanted, with a reminder to approach me gently when I have a bad headache and he will be more likely to get what he wants. "You have a headache?" Sigh. Really? All three of us trade back rubs, and the kids put me to bed, which they love to do when I hurt. They shut down the house, and tuck themselves in. I have trained them to be very independent on days like this, and they love "feeling big" by taking care of Mommy

I did not get a full night of sleep; pain woke me a few times. But I still got up today (incidentally, to a house full of pranks. Happy f-ing April Fools Day. My kids do not yet understand the concept of the headache hangover...) I’ll go get the bag, and all will be well. And I’ll keep going, every day, because not every day is like this. But when they are, I keep putting one foot in front of the other. I guess I am capable of being whacked with hammers after all (Dim lights, end scene.)