This one's long, if you read it to the end I'll mail you a cookie.
Last week I was driving the girls home from school, and I
felt a spider on my elbow. A SPIDER y’all! Normally, this would cause thrashing
and a blind panic, but it’s a measure of how shell shocked I was that I calmly
pulled over and tried to find the offending spider. When I couldn’t, I just got
in and drove home. This is the same me who a few years back saw a spider on her
window, drove across town, pulled into the garage, and refused to get out of
the car until Mike came out to give the all clear that said spider wasn’t
waiting right over the door crack to jump on me and wrap me in its web all
Arachnophobia style. *shudder*
But
things are blunted, and especially that day. This has been a rough few weeks,
with Clara having the UTI from heck and me basically wishing I could switch
spots with her as I sat by her in the ER for two nights. This week she had more
testing done and in two weeks we go to see a specialist in Chicago. I’ve been a
little preoccupied, to say the least.
So I
hadn’t been thinking too much about an appointment I’d been waiting for since
May. Ever since I saw a table at the Sunburst and I stopped and had a
conversation with the volunteers. These wonderful women introduced me to a
world I had only been very partially aware of, and initiated me into the tribe.
At least they were a loving tribe ;) But no matter how much they said I may belong, I had my doubts. I saw my primary care doctor that same week on
Monday, and she referred me to Dr. Collins, THE local (and perhaps regional) specialist
on EDS.
So,
what in the what is EDS? Come on, I know you secretly watch American Ninja
Warrior! Remember the man whose wife was in a wheelchair with this connective
tissue disorder? Well, that’s EDS. Or one of its many faces. EDS stands for
Ehlers Danlos Syndrome. It’s a connective tissue disorder and there are six
types, with symptoms sometimes crossing types but mostly contained in the
primary type. It’s also a spectrum disorder, which is why I have been living
with it for 30 years (okay, 30 SOMETHING years) and didn’t realize it. Some
people can have severe symptoms and are easily identified, and then there are
others who have all these symptoms but never connect it back to the root cause.
I could give you statistics and whatnot but suffice it to say, you probably
know one, or more people with EDS, and they may not know it. As Dr. Collins
said, “did you answer the foot phone as a child?” If you have NO idea what
we’re talking about then you can’t come into the clubhouse, since that’s pretty
much our secret handshake.
But I
should back up. How did I get from a table at a race to a life altering (mostly
for the better!) diagnosis? It started when I was back home in Tucson for a
visit when my mom was sick. This was the time before she passed where all the
kids came home and she was out of the hospital by the time we arrived. I think
there was some definite God work there, we all got to spend time together as a
family one last time before my mom was gone. What a special time….
We were
all hanging out in the backyard and my brother was like, “Oh hey, watch this
cool party trick!” (which isn’t even close to what my brother sounds like but
it was years ago, so I have poetic license). Then he proceeds to pull the skin
up on his arm like a curtain. I’ll try to insert an image link here but if it
doesn’t work google EDS skin images. He then tells us he had been self-diagnosed
with EDS, and he thinks it’s a tissue disorder, etc. I was like,
“oooookkkkkaaaayyy… You’re weird! And I think you made that name up” (on the
inside of course). Then I proceeded to completely forget all about Ken and his
“EDS.”
Ken is way less hairy and more stretchy if memory serves.
So years later, this has to be at
least 4 years now, I walk up to the Sunburst to pick up my race packet, and I
see this table for Ehlers Danlos Syndrome. And a light bulb clicks, I’m all,
wow, my brother had that, or I think that’s what he called it, let me talk to
these ladies. I’m chatting with them, and telling them about my brother, who’s
really bendy and has weird skin, and one of the ladies, Anne I think, looked at
me and was like, “so no one else in your family has EDS?” And quite blithely I
replied, “nope!” Oh self, I’m cringing at your ignorance. As a health care
professional maybe you should have looked it up when your brother told you he
had it? Oofta!
Then I
find out it’s an autosomal dominant inherited disorder, which means one of my
parents had it and they passed it on, there’s not a way to be a silent carrier
like some diseases. And we chat more, and they ask more questions, and, not to
diagnose me, but Pam told me right then and there that she thinks I DO have
EDS, it’s just that mine looks very different from my brothers. I had a
doctor’s appointment that Monday scheduled because my gut is a wreck, and I
told them I would talk to my primary care doc about it (they then shared gut
issues are a symptom of EDS). They gave me the name of the EDS doctor in town,
which is a miracle, because EDS isn’t that well diagnosed, and I can guess
there aren’t a ton of specialists out there.
I had my appointment with my GP
(who, incidentally, is awesome! Hi Dr. Weston!!) and she thought my symptoms
could definitely point to EDS, but I needed to see Dr. Collins to be officially
assessed and diagnosed. How diagnosis
works is this, if you have certain types of EDS, you can get genetic testing to
confirm. Other types it’s by clinical diagnosis. My type of EDS is hypermobile.
Basically I am very bendy and stretchy. Yes, I thought everyone could touch
their wrist with their thumb. Apparently not so much. If you think about it,
connective tissue is everywhere, it makes up your body systems as well as, um,
connecting things. My brother has super stretchy skin, I have baby soft skin (I
totally got the good end of that symptom). My brother also has dislocations of
his joints pretty frequently, where as if I dislocated something you’d have to
pick me up off the floor. Just for fun,
here’s a list of symptoms someone with hypermobile EDS might have. Not
exhaustive, just the ones I could get down as I was talking to the doctor.
Migraine-Um, hello! Yes, this is an EDS symptom. And with
the correct supplements this guy may never have to take another med and may
never suffer another migraine. You are reading that correctly people.
Tummy issues-We’ll just say, to be polite, EDS’ers tend to
get backed up or flow too quickly. And see above as to my reason for visiting
my GP. Again, totally treatable with diet & supplementation.
Torn cartiledge/etc-So remember when your fearless blogger
had to go get hip surgery at the ripe old age of 32? And the only explanation
was years of wear and tear? Well, here’s a new theory. Right about that time I
started taking a cardio kickboxing class with Mike, and it was on awesome,
impact absorbing, grippy floor. So when you pivot, say for a round kick, your
bottom foot may not turn all the way around like it would with a proper round
kick. Normal people would then be able to kick with the top leg so far. But my hip
labrium were all like, “dude, we surrender!” and they just tore and allowed me
to complete the kicks. Um, thanks? So years of working out on basketball courts
and worn carpets have actually been protecting my joints until now. Who knew?
Light headedness-some people get POTS, look it up, but yours
truly has neurally mediated syncope. Basically my blood pressure and heart
rate, already super low (thanks EDS!) drop down so far that I pass out. Or at
least in my case feel woozy until I grab some ground.
Small mouth & dental crowding-Hello 7 teeth extractions
and braces for days…
Terrible eyesight-the optometrist told me last time I asked
that “they don’t measure that high” so basically, blind. Along with this is
difficulty seeing at night (which I have and which is why I hate to drive at
night, but now I have a documented reason to bum a ride).
Insensitivity to local anesthesia-Yes, I hated the dentist
for years, because whatever they did HURT. Then I moved here and got a decent
dentist who gives me a lot of Novocain. God bless the Midwest!
Arm bumps-they’re just weird…again, should be able to get
rid of them with the supplements
Depression & anxiety, difficulty falling asleep and
staying asleep, and always doing three things at once-basically, Dr. Collins
explained that you can “rest & digest,” or “fight or flight.” I guess you
don’t DO fight or flight, well, whatever you get the drift. Basically I produce
a lot of adrenaline. So something that wouldn’t cause you to jump will give me
an exaggerated response. Over time, my body’s like, man, this is SO wasteful (I
hear my grandma Catherine in there telling me to wash the tin foil!) so it
makes more receptors for adrenaline. Now I have normal levels of adrenaline,
but way too many receptors for it. Guys, I totally have the advantage if a
wooly mammoth is chasing my baby. But I don’t have the advantage when say, I
need to get up in front of people and do something that scares me. Too much
adrenaline=terrible job focusing and crazy heart rate/messing up. Oh, and I’m
never able to sleep and I suffer from depression and anxiety but those things
alone merit an entire blog post, so let’s table them shall we?
Bone tumors-“It’s not a toomer.” But then again, it was. The
tumor in my jaw, what, 6 years ago? Thank you EDS.
And then pain. Oh yes pain. Luckily for me, I don’t suffer
from this to a severe level. If I squat down to take pictures for eBay, my
joints complain. My brother is in constant pain. So on the pain spectrum, I’d
say I got off pretty easy. Over time, people with EDS can develop early onset
arthritis, so that’s something to be aware of, but I’m not borrowing trouble.
There’s more. Of course there’s
more. But those are the ones I’ve had to face and those are the ones I’m
dealing with now. Now for some good news-I can run. Oh yes I can run! You’d
think it’d be hard on the joints, but when you run you don’t hyperextend your
joints, and that’s what I’m protecting against. In fact, staying physically fit
and active will help to manage and maybe decrease symptoms. If you’re healthy,
your whole body is happier. TRUTH.
I mentioned diet and supplements
above, a LOT of my issues can be helped or completely alleviated with changes
in those. Drastic, yes, but still an option. Let’s just say I’ll be getting rid
of a few things none of us needs, like HFCS, food dyes, MSG, white sugar, and
sugar substitutes. Then there’ll be those things that are a little tougher.
Gluten, sugar (yes, I realize I listed it above, and still….), shelf stable
processed/preserved foods, milk, and meats with hormones, and possibly
tomatoes, potatoes, and peppers. I also now get to avoid grilled, fried, or
toasted food. See yah George Foreman. I’ve
gone from taking zero supplements a day to a whopping 11 pills, BUT like I said
above I may be able to drop the migraine meds, so even though it’s 11 vs 3, it’s
an even swap in my book.
So where am I now? I won’t lie.
I’ve had some moments where I’ve felt pretty broken. Changing my diet so
drastically is going to take effort. I love food. Chocolate cake is my buddy.
We don’t hang out every night but I know I can call him on a Saturday when I’m
chillin and he’ll come right over. But Mike and I survived the food month of 7
eating only 7 foods so I know I can do it. I keep telling myself this and
pretty soon it WILL stick.
Exercise-well I can run, but what
makes me sad are the exercises I DO have to give up. No yoga. No kickboxing. No
Zumba. No workouts on real gym floors. I was literally hours away from starting
to teach a “real” class again and had to give it up because of the excellent
flooring. Seriously, where’s the frowny face emoticon when you need it? I need
to start at the ground up and make sure all my form is spot on. My body will
let me do things I shouldn’t, and then I’ll pay for it. So the master becomes
the student? Or the advanced student becomes the student? Or, well you get the
point.
I also have guilt. The girls
will be changing their diet with me. We won’t know for sure until they’re
older, but I’m 99.9% sure Olivia has it. Clara, I’m leaning towards no. But I
feel like crap for bringing my faulty genes to the gene pool. I know there’s
really nothing I can do about it, but as a mom I feel like I should have KNOWN
and protected them. It’s kinda my job. But barring that I’ll be doing my best
to protect them from here on out. I pray that they don’t get the worst symptoms
and since I am aware of the EDS now, if they are symptomatic, I can help treat
those symptoms quickly.
Having EDS isn’t ideal, but we’re
in this together, and we ARE going to make it out the other side!
