I shake my fist in frustration…and I cry.

“When you hear hoofbeats, think of horses not zebras”  ~ Dr. Theodore Woodward

However, don’t forget…that zebras do exist.  I am a zebra.

I never wanted my blog to be another one of those dedicated to bringing awareness to something.  I also did not intend for it to be solely about me writing letters to my grandchild either…I just wanted a space to get things out of my head.  A place where I could share the things that I want my friends and family (F&F) to know and understand, but really don’t want to talk about.

This is my space.

Today, I am struggling again.  I am sitting in a hotel in Carlsbad, California and I am miserable. Not because the weather is bad or because I am with bad company and not even because I am here for work.  I am miserable because I am not able to do all that I want to do.  I have been forced to miss out on part of the agenda for this trip.

I am limited in my physical activity.  Most of my F&F know about my Ehlers-Danlos diagnosis but have little if any understanding of what that means.  HECK, I am still learning.  But here is the readers digest version (for me specifically, not all EDSers).

This condition is hereditary, my mother or father passed it on to me – I am guessing Mom.

It is a connective tissue disorder.  EVERY PART of and ORGAN in our bodies has connective tissue.

I have the Hypermobility type.  It won’t kill me…just cause me pain…always.  I try not to feel sorry for myself, so many others with EDS have it far worse but today I cried for me.

There are conditions that are referred to as “comorbidities” that are common to EDSers

The doctor who diagnosed me with EDS, has also stated that I have Mast Cell Activation Syndrome (MCAS),  and Postural Orthostatic Tachycardia Syndrome (POTS).

I have TMJ Disorder and Sleep Apnea

It has also caused my airway to be smaller/underdeveloped and contributes to sleep apnea, which I cannot wear a CPAP machine or use an oral appliance to correct because I have a reaction to both of them.  I have had to have allergy testing to figure out why I cannot wear dental devices to align my jaw and learned that my skin is sensitive to pressure due to DERMATOGRAPHISM (basically a histamine response to pressure) and an allergy to Balsam of Peru and Gold (as well as all the other environmental and animal allergies I have always dealt with).

I could keep going, but I am sick of typing about it and explaining my disorder was not the point of my post.  The point is…the frustration.  I hate being limited.  I had to accept years ago that I cannot wear cute shoes with heels.  In the past year or so I was instructed to not use stairs…  Because the worst of my pain stems from my sacroiliac joints being out of whack.  Yesterday…I was at the beach…in CaliFRICKINfornia…and I will be damned if I wasn’t going to get my toes in the sand.

There were stairs, quite a few.

And the days leading up to my trip were not what I call “down” days –  meaning, intentional  time of restoration.  The day of traveling was brutal.  I over did things.

I am paying the price.

 

(For those of you who want to learn more, this article was written by the doctor who gave me the diagnosis:  http://ehlers-danlos.com/2014-annual-conference-files/Heidi%20Collins.pdf)

 

 

The Struggle

I envision myself on a raft that is filled with air and is transparent, but blue.  I float on the ocean, but near enough to the beach that I can hear the waves hit the shore.  I hear gulls crying overhead. I feel the sun on my skin.  I have one foot dangling in the water, sunglasses on, my body is perfectly healthy, I am wearing a bikini.  No one around…just me. My body does not hurt. My mind is not preoccupied. I am at peace. With a song in my head:

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand…”

I have been seeing this image every day for the past 7 days.  I have been kicking the tires on “mindfulness” because I have been dealing with some anxiety.  I guess that, if I am to be honest, I have been dealing with anxiety for several years.  It started the year before my father died.  The stress of his poor health was getting to me.  The constant wonder of when the next call would come.  The overwhelming sense of responsibility and obligation while working two jobs, being a wife and a parent to two children…it was a bit much.  Not to mention the pain…the physical pains that were always there from an undiagnosed condition…Ehlers-Danlos Syndrome, but this post is not about that.

I was put on anxiety medication and after my father died, I assumed the anxiety would dissipate so I stopped taking the medication for almost a year…but I was wrong. The anxiety was still there, I just could not attribute it to anything specific.

My weight has been a constant struggle.  I tried All Of The Things that are available and affordable.  I have enough head knowledge to understand what is and what is not good for me…but I don’t have the control.

The anxiety is still there…here.  And I am an anxiety eater.

I am trapped in a vicious cycle.  It took a while to realize where my anxiety came from…the pain.  The constant thinking about whether or not I can or could or should do something and the repercussions if I try or if I don’t try.  Imagine dropping something on the floor…you would just pick it up, right?  I have to think about how to pick it up.  There may be no pain in the moment from bending or kneeling…but later…later is a different story. Dropping that thing on the floor could haunt me for days.

So I take my medication and I try to do my best to do my best, but anxiety makes me want to DO something, it makes my skin crawl and I can’t PHYSICALLY do the things I want to do to make the skin stop crawling – go for a walk, clean the bathtub, an hour of yoga, take a long drive to nowhere – so I turn to the thing that I can do… I eat.

Now if I could live in a box where the only food available to me was that which was good and healthy and necessary, I would be okay.  I think…I’m pretty sure.  But until recently, there were at least two and sometimes four others in my box and they do not share my struggle.  I also work in a box where people share their edible goodies…there are very few places in the vast building I am in for 8+ hours of my day where temptation isn’t lurking at me around a corner, or down the hall… leering at me…lying to me and telling me that just one bite, piece, nibble won’t hurt.  And I am weak in this matter.  I believe the lie. I give in to the temptation.  By eating…I am DOING something and I feel good…for a moment. Then I feel guilty and ashamed and out of control.  I stuff this feeling, these feelings…because there is nothing I can do with them, there is nothing I CAN DO WITH THEM.  The anxiety comes back.  I try to ignore it.  I long for a cigarette or a glass of wine, both of which would cause me pain in one way or another…creating more anxiety.

I begin looking up prescription weight loss medications but my insurance would not cover the cost and I look up eating disorders and cringe when I read about Binge Eating Disorder and wonder…is that me?  I contemplate calling my doctor…but I know what she will suggest, better eating habits (no kidding), exercise (pain), a dietician (costs more than I can afford), journaling my food (I have and it causes me to CONSTANTLY THINK ABOUT FOOD) … I don’t want to seem help resistant but I am tired of this vicious cycle.  I call my spouse and I cry about it and God love him, he wants to help me fix the problem…but I don’t know how he can.

I simply want to be on that raft, in my perfect body, pain-free, anxiety-free… at peace.

God hear my prayer…

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

GranDawn’s log: Month 7

Dear Nathalie,

No one can believe you are more than half a year old already!!  The years really ARE short.

nathalie7mo

You will be happy to know that the interlopers are gone and you and your parents have returned to your abode.

You will be saddened to know that Aunt Pixie and her kitty Avery moved to Washington… a mere 4 day drive away from home.  Saying goodbye to you was the hardest thing Aunt Pixie had to do that day.  I don’t think I have ever seen that many tears fall upon her face…ever. You have had two video calls with Aunt Pixie already and the most recent one was yesterday…As soon as she started talking to you from the computer you started inch-worming your way across the floor at her!  You were so smiley and pounding your little hand in excitement for quite some time…and then you saw my sock covered foot and decided to gnaw on my toes.  You really were excited to see her, though.  I pray that continues.

byeauntpixie

Your development is happening nicely.  You are sliding around and belly scooting along the floors and you even reach out occasionally to people you want.  You are becoming consistent in pulling on your ear when you are tired…specifically your left ear (or at least when I see you doing it).  You hold your bottle pretty much on your own. Your menu has expanded a bit but I am not kept current on that…you had some concoction that had chicken in it yesterday.

Unfortunately, and contrary to the doctor’s assumptions, you are still spitting up ALL. FREAKING. DAY.

Other than all of that, life seems to be back to routine…although rumor has it there may be a kitty in your future.

grandpas-girl

Happy 7th-month tiny one.  Keep doing what you are doing.

Love, GranDawn.

 

GrandDawn’s Log: Day 187

OH MY GOSH NATHALIE!!

I totally missed your 6-month milestone, your second quarterly review!   In all fairness to me, only by 4 days.  I might even say that it is your fault.  YOU have been quite the distraction this week.  Perhaps we can place the blame elsewhere… but that would be a long story and I don’t know if you understand the word “interloper” or if you would ever be able to wrap your head around the lackadaisical way the County of Elkhart handles things regarding unwanted “Tenants at Will” but let’s just remember this is the year you spent living at The Grand’s house for the holiday season… yes, you have pretty much been staying with us (your parents too) since Thanksgiving.  In the spirit of the holidays, I am just going to give the review 5 stars and thumbs up!!

The good thing about having you here every day is that I have really gotten to watch you in all your glory and fury.  Yes, you have fury…and it is ADORABLE, but maybe not so much when your parents are trying to sleep.  You are sleeping more during the night but there is no real pattern to your sleep time.  I think this crazy living situation has sort of screwed that up for you.  BLAME THE INTERLOPERS!!  Your daytime naps only seem to average about twenty minutes (unless you count the ones where GrandDawn gets you to sleep). You still demand to be entertained most of the time, which is really unfortunate for whichever parent is in charge of you because that means that a lot of things don’t get done regularly.  I imagine it is really hard on your parents with Dad working a normal(ish) Monday- Friday 9am to 5pm (ish) and then Mom working whatever days 4 – 6 days a week usually at 3pm to 10:30pm.   People who work the same shift can tag team childcare and household chores… but then they need full-time childcare and that cost can be expensive. There is always one sacrifice or another in parenting.  Moving on…

You are SOOOOO close to mastering sitting up (spitting up is something you excel at and may have even earned a degree) and your rolling over is spot on…you have tested out the Downward Dog pose for Yoga and quickly dismissed it as a means for transporting yourself and have opted for simply rolling along the floor toward whatever objects have your attention.

I want to let you know that most babies BABBLE. You, my dear Nathalie, growl and grunt. You are a little weirdo and I love it!  You fell asleep on me the other day and you were even growling in your sleep…followed by smiling in your sleep.  Super. Flipping. Cute.

You have successfully (meaning without showing signs of being allergic) consumed oatmeal, sweet potatoes, peaches, apricots, prunes, apples, bananas – sort of,  combinations of those things, and I believe next on the list is pumpkin or blueberry.  If you show signs of being allergic to pumpkin I will be heartbroken.  AND…your father allowed you to suck on a lemon and you did not make the face one might expect from a baby experiencing a face-puckering citrus fruit for the first time.  I wasn’t there…but I imagine he may have been disappointed.

You have also experienced your first illness… it began right before Christmas and you were feverish and congested and based on the past day or so, I think you are finally getting through it.  I must apologize because odds are that my pneumonia which then became your mom’s pneumonia became your own personal ick… I am so sorry.

nathalie-sick

Your first Christmas has come and gone.I am happy to report that the very first Christmas present you opened was…A UNICORN!!!  I think that your seventh present was a unicorn too…Thank you, Mrs. Jen! A this exact moment you are visiting with Grandma Christine and Grandpa Doug and they brought you SO MUCH STUFF!!!  I hear that you are being a super cute baby for them, and I think you may have a diabolical plan to hide your fury so that they keep bringing you more!  Between all of your grandparents and the extended families, you received quite the HAUL .. Let’s just call it Mount Spoiling and be done.

Finally, let’s talk about the rankings of your favorite people… because you know I was trailing behind GrandFather and Aunt Pixie; however, I do believe that I have lapped them! We have been playing a lot together and I have made you laugh and laugh and GROWL. This past week with you I have had the magical touch in making you fall asleep and for one of your naps you slept for 45 minutes, followed by 30 minutes of snuggling with me and then slept for another 90 MINUTES!!! WOOT!! How do you like me NOW?!?!?   Not to mention, I have found the magic trick to putting you down when you fall asleep in my arms…a good magician does not share their tricks. Unless of course, all of this magic touch is a by-product of your illness.  Whatever…I’m celebrating in the end zone and taking my penalty with glee!

nathalie-six-months

Happy New Year Nathalie!!!

Keep loving me the most.

Love, GrandDawn

 

GrandDawn’s Log: Month 5

Dear Nathalie,

Though you did not realize it, you were present for a couple of very important moments this month.  First, we had to say Goodbye to your mom’s first cat, Ash.  She was an old cat, same age as your momma, but she became senile and she was not living a happy life.  You, however, did not have a care to give about this event based on the picture below:  goodbyeashLook at that, your mom and dad are saying farewell to a heavily sedated cat and you are just living it up!  It’s not your fault, I get it, no one has taught you any manners yet.

Aunt Pixie celebrated her 26th birthday, and you missed it.  It’s okay, we know you don’t have a car or a phone… or the motor skills to operate either of them or the vocabulary to wish someone a Happy Birthday.  Maybe next year.

You also celebrated your first Thanksgiving.  You were completely oblivious to the mountain of food but you were so happy to be surrounded by people.  You were so busy people watching that you hardly noticed that you had a protrusion trying to work its way through your tender little gums.

Yes, you are teething…and it sucks. You live with your hand in your mouth most of the time, but don’t worry – Gramma ordered you a Munch Mitt.  You also like to nom on your blankets so I also ordered you this weird thing called a Terry Teether.  Let’s hope something brings you some relief.

Between teething and the regular waterfall of regurgitated formula that you expel, you are constantly damp. Based on being with you for several days straight,  and the science behind the people at WebMD, I am fairly certain you have GERD.  I have been trying to mentally invent a contraption for you to wear around your head or neck to catch the flow of liquid that regularly escapes your mouth.  A bucket bib per se, but one that has the bucket part right under your chin –  because a regular bib just doesn’t cut the mustard.

Enough with that.  Let’s talk about the cool things you are doing.  You DEFINITELY like squeaky toys and Aunt Pixie someone has threatened to shop the pet aisles for your Christmas toys. You are rolling over onto your tummy and lifting yourself up.  You are showing your future potential as a contortionist by chewing on your feet.  You like to grab the faces of the people within in your grasp (and promptly gauge them with your sharp little nails).  You are experimenting with baby food… you are not keen on the apples but so far sweet potatoes are acceptable – rumor has it that bananas are next on the list and this will be a very intense moment as this is one of the things your father seems to have an allergic reaction to…I will be asking my friends to pray for you later today.  Oh, Miss Nathalie, how I wish you had been born with my iron stomach.  OH, you also seem to enjoy when I cover you in a blanket and slowly pull it off of you, sort of like peek-a-boo but not really. You seem to need constant entertainment; I read somewhere that is a sign of higher intelligence… why couldn’t you just be – nevermind – you’re perfect.

nathalie5months

Keep reaching for your toes Little Miss.  We love you bunches.

Love,

GrandDawn

 

GrandDawn’s log: Month 4

Dear Nathalie,

You have survived 4 months and 4 days of life thus far.  Bravo little one, BRAH VO!

You are developing quite nicely.  Your visual acuity is on point and your ability to reach out and grab your feet has come along quite nicely.  Which also means that you enjoy it when I play with your feet!  For today anyway.

Your ability to crush the heart of a grown up is well above average –  you have the “sad look” perfected like no other.  There is something about the way you squint your eyes and push out that little bottom lip that makes the heart just seize up from the desire to make you happy again.  I fear for your Grandfather… he did not get the nickname “Uncle Sucker” for nothing.  We may just have to change the “Uncle” part…

On one of your more recent visits, I subjected you to a viewing of one of my favorite animated movies:  The Last Unicorn…to be honest, I watched it while you did your Nathalie thing and discovered new objects and demanded to be entertained… the only time you showed any interest was during the theme song… so, like a good GrandDawn, I purchased the song and added it to your playlist.  I really hope that playlists are still a thing when you are old enough to comprehend this letter.

As I type this, you are visiting  Dr. Sarah Bajuyo and getting shots (your mom loved getting shots – really, she did) and your current stats are 13 pounds and .02 oz and you have sprung up to a whopping 24 1/2 inches!  Your father likes to point out that you are more than 1/3 of  your mother’s height.  It’s okay, your mommy might be less than a giant physically, but she is FIERCE – don’t mess with her… she may appear to be a cute, little, angelic snuggle bunny – and she is for the most part, but she can turn into the Mother of Dragons when you push the wrong button… consider yourself warned.

nathalie4months

To be honest, you are still simply perfecting the art of cuteness and not much else.  You are trying your hardest to hold yourself up in a sitting position but you just aren’t there yet,  you keep spotting your feet and then you reach for them and once that happens your course is set and downward you go… like one of those little Roly Poly bugs…pill bugs I think they are called.  Anyway,  until you get that stuff down, I am afraid that we just can’t move forward with some of the activities I have in mind for you.  (Like learning how to write, type,  complete jigsaw puzzles, and Aunt Pixie is sure to want to teach you how to use chopsticks while you are mastering the art of common utensils.) I suppose we just need to let you develop your gross and fine motor skills for any of that to happen… Although, it would be really awesome to see a baby using chopsticks while writing on a fine piece of parchment with a calligraphy pen.

I know, I know… slow my roll.  I hear you.

Just keep doing your Nathalie thing, you will eventually catch up…I have patience.

Love, GrandDawn

 

 

GrandDawn’s log: Day 93

Dear Nathalie,

Yesterday you officially turned three months old!  Go YOU!

You’re at an age where I have to do math in order to title my blog posts…but you’re worth it, for now.

Now, for your quarterly review:

I thought that I was beginning to notice that you enjoy it when I play with your toes, and after checking with your mommy supervisor, it was confirmed for me today!  YAY!  I don’t know why I like the idea of playing with your toes, other than being able to play “This Little Piggy” along with all of my whimsical variations of it…it could be an illness.  When you are old enough to complain, feel free to ask me to stop.

Your babbling is at that stage where it is adorable and your spittle bubble blowing abilities are top notch!  You are pretty capable of rolling from your back to your side. Your digestion could use some improvement, what with the constant spittle after feeding… it’s an issue that you need to work on.  I had spittle in my jacket pocket from you yesterday…that was ridiculous.

You are beginning to really interact with the toys I shove in your face and you do love a good minute in front of a colorful television screen.  We have all resigned ourselves to your morbid lullaby… your father now has it downloaded.

nathalie3months

Your face is definitely a mommy/daddy mashup.  Your eye color seems to be favoring that darker blue of your mother.  Your hair color…might actually be mine.  If so, people will call you a redhead, and a blonde, and there will be random people who say your hair is brown… like Aunt Pixie, she says my hair is brown. I admit, my locks are all three, it’s quite wonderful to not have to color it as I go gray silver white  whatever color each individual strand decides to turn into.  If you do get my hair color, you’re welcome. I will, however, apologize in advance for the unbearable warmth if you get the QUANTITY of hair… you come from a long line of thick locks, and if you have thin hair, it ain’t from my branch of the tree. If you get curly hair, I am totally saying it is from your dad unless they are perfect ringlets…we shall see.

I think that covers everything for now.  I don’t know that you will receive any kind of monetary compensation for your performance, but lots of love and ridiculous faces from and interactions with silly adults are coming your way…perhaps an increase in food variety, if you get that digestion thing handled.

Overall, good job Nathalie, thanks for joining the team.

Love, GrandDawn