The Incredible Adventures of Malleable Mom
Thursday, May 8, 2014
Thursday, May 1, 2014
Why I Drink
Sure. We all go through it. The nightly hijacking of our adult time by the terrorists among us: our offspring. Think that I have any more sympathy for mine just because they have medical issues? Think again...
Night Noises: A One Act Play
(inspired by the hit children's story 'Go the F*** to Sleep!')
by: Ashley Fuchs
Dedicated to: my children, without whom, I would have time...and a life...
Dedicated to: my children, without whom, I would have time...and a life...
The
Cast:
Mom:
Ashley (Me)
Daughter:
Eldest Rubber Duck
Son:
Youngest Rubber Duck
Dad:
Mr. Ashley
The
Setting: A typical bedtime routine on a school night, 20 minutes past bedtime and just past the point where
my patience has run out…
[In
Son’s room]
Mom:
“It’s past bedtime, so it’s time to tuck you in. Do you have your wrist braces
on?”
Son:
“No.”
Mom: Sigh…"The ones you wear every night? That you should know you need to
have on by now? Where are they?”
Son:
“I dunno.”
Mom:
Turns on light. “Well, help me look for them.” Found under the bed with about seven
balled up socks. “How did they…? Nevermind. Good night. Sleep well. Do you need
anything?”
Son:
“No”
Mom:
“OK. I love you.”
Son:
“See you in the mor-ning!”
Mom:
“See you in the mor-ning!” Steps out of room.
Son:
“Mom!”
Mom:
“What?”
Son:
“I need water.”
Mom:
“I just asked you that. You need to get it before we get into bed. It’s too
late now. Good night…”
Son:
“I NEED WATER OR I’M GOING TO GET DEHYDRATED AND GET A MIGRAINE!”
Mom:
(Grrrrrrrrrrr): Get.it.yourself. I have to put your sister to bed and sit down
for five minutes tonight.
[In
Daughter’s room]
Mom:
“OK, hon, it’s bedtime, so put down the book and…good LORD how did your room get
this messy? Anyway, did you brush your teeth?”
Daughter:
“No.”
Mom:
“It’s 9:00! I sent you up to do that an hour ago. Get it done…and remember to wash
your face and put on night cream so you will have nice skin…”
Son:
“Mom?”
Mom:
“Go to sleep, Son!”
Son:
“How come she gets to stay up later than me?”
Mom:
“I’m closing your door…”
Son:
“No!!!”
Daughter:
“I’m finished!”
Mom:
“Great. I was just watching your fish swim around while I waited. Did you remember to feed him?”
Daughter:
“No…”
Mom:
Gathering chi, counting to three. “If you don’t feed your fish, then it won’t
live. Let’s do it now.”
Son:
Leaping out of bed “I want to feed mine!”
The children feed
their fish, peppered by minor arguments over who gets to go first, etc.
Finally, everyone is back into their own beds with the lights out.
Mom:
“Goodnight, Daughter. Do you have your wrist braces on?”
Daughter:
“No.”
Mom:
Losing it…“REALLY? ‘Cause I seem to remember that’s something that you have to do
every damn night! Where are they?”
Daughter:
Looking at a pile of clothes next to her bed. “Um…”
Mom:
“OK, I’m out. I haven’t sat down all day. You find them and turn your own light
out. I love you…very much…”
Daughter:
teary “How come Son gets a better tuck in than me!”
Mom:
Sigh…”Because it’s 9:20 pm, and you should have been asleep 30 min ago.”
[In living room]
Mom
sits down with Dad, who has just finished washing the dinner
dishes and walking the dog. A television program is on.
Mom:
“So, how was your day?”
Dad:
“Well, actually…” Footsteps are heard on stairs. Both parents freeze. “Who is
it, and what do you want?” Dad says in a not-inviting voice…
Son: (in a small voice) “Mom…?”
Mom:
Dropping her head in her hands. “What.”
Son:
“My hip hurts. I need tape.
Mom:
“Yeah, your hip hurts, Son. You tried to ride your scooter down a hill and fell
off, pulling your groin. You probably subluxed it. I offered you ice and you
refused. You need ice.”
Son:
“Can you tape it?”
Mom:
“I will tape it in the morning. Do you want ice?
It will make the swelling go down and make you feel better so you can sleep.”
Son:
“No.”
Mom:
“Then go to bed, and don’t come down again.”
Two minutes
later…
Mom:
“Son! I said not to come down again!”
Daughter:
“It’s me.”
Mom
and Dad: “What are you doing out of bed?!”
Daughter:
“I need ice. My knees and ankles hurt from ballet.”
Mom:
“Why didn't you do it when you came home from ballet like I suggested? It’s 9:40! You need sleep! And I
need to have some time with your Dad that doesn’t involve the two of you!”
Daughter:
“But Mom, I’m just trying to do what you said to do when I hurt!”
Mom: Walking to the kitchen. “This is why I drink.”
End
scene.
Monday, April 28, 2014
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...
Thursday, April 17, 2014
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.
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.
Which one are you? |
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!
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!
Ditch the UGGS: try these instead |
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 |
Tuesday, April 8, 2014
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 |
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.
Thursday, April 3, 2014
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.
Tuesday, April 1, 2014
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.)
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