Tuesday, December 31, 2013

So long 2013! Good riddance!

I'm so ready for 2013 to be over! It's been a rough year!

Let's see... This year in recap:

Husband was laid off January 2013 and we because single income again - boo!
March  I joined the Catholic Church. YAY!
April husband was rehired. YAY.
May husband wrecked his bike and ruined his collarbone, breaking it into 4 bits and resulting in a very painful repair. BOO.
June FMLA was declined because of the gap in work history, even though they laid him off and rehired him just because of department size, not performance or anything. BOO.
July - New system at work, new fiscal year, new boss over my super, new everything basically. Yeah...boo.
August through today - tons of stress from medical, bills, work and relationships.

I'm just ready for a reboot. I need balance. I want to feel I can achieve my objectives and get some relief.

(Thank God for the good people at Starbucks!)


2014, this is going to be my year, or imma kick yer "baby new year" butt!

Saturday, December 28, 2013

Charlie the nurse dog

Charlie cuddles on my achy breaky joints, and a lovely image of my knee bruise from the recent trip. ;)


Friday, December 27, 2013

Bloody Friday!


At 3am our day began.

It was so cold this morning that my husband couldn't ride his bike, so we had to hop on down the road to drop him off at work.

Charlie and I decided to go home until sunrise and then go play at the park. He made friends with a Great Pyrenees, and they ran around like crazy dogs! We're so lucky to live near a beneful dog park! It has agility equipment, dog water fountains, durable astro turf and clean up stations. People leave old tennis balls and rope toys there, so I didn't have to haul any stuff with us, just get my keys, wallet and tell Charlie to heel, and off we went!

He was so eager to get there, but obeyed commands until he was out of his harness that I decided it would make sense to get back on up the road and warm up with some coffee.  I adore the staff at our nearest Starbucks! I got mom a frappucino, and Charlie got a puppichino! ;)


We had a huge blood drive at the mall today. My husband and I currently work for a blood bank.


I'm so thankful for all the volunteer blood donors today, and it was fun, but hot dang I'm so done in! My energy levels are through the floor. Usually this makes me cry, but someone disrupted my pattern by hopping up on the bed for a snuggle attack!


It's the first time I've ever seen him try to get on furniture!! I got BATHED in slobbery kisses. :D

Life feels so different with Charlie in it. I catch myself laughing...and it's sad to admit, but it's a foreign sound lately and it takes me by surprise. All due to an 86 lbs puppy!

Thank you, God! Your dog makes me feel so much better! Amen.


Thursday, December 26, 2013

Gluten free Vegan "cheese" pizza
From Mellow Mushroom


Today sucked so I tried to make it better.

I got to visit my friend JM and she was a huge encouragement to me!

Not much to report tonight otherwise. Charlie is laying down chewing the heck out of his kong. He's adorable with it. We went to the dog park yesterday and he had a total blast. Played for an hour and a half with a boxer named Oscar. :)


Wednesday, December 25, 2013

Trying to be able bodied...

Man, I feel like a dope.

I came to my parents' house, and lost my keys in the hurry of getting me and Charlie all together. I decided while they visited with their friend _______ that I would tell Charlie to sit! stay! And just go find my keys..... 



He obeyed and if I had been less independent I wouldn't have fallen and given myself a gorgeous plum and blueberry bruise on my kneecap. Charlie said "aw, mom! I told you so!" And gave me kisses.

Mom gave me arnica and peas in a towel, and Charlie got a bone from petsmart.

Word to the independent minded newly minted gimp who wants to still be independent and able bodied.......ask for help or use the help you have and don't be stubborn and stupid like me. The pain is NOT worth the illusion of independence.

Tuesday, December 24, 2013

Merry Christmas!

I got a new shirt from my husband! Now I know how BBC's Sherlock survived the Reichenbach fall...



He hopped in the Tardis with Doctor #11!

In other news, I saw the geneticist Christmas Eve morning. I'm really emotionally spent today. I can't really write about it at this moment, but let's just say it was a very weird experience to have a doctor spend hours with me and validate my pain and past.

I was diagnosed with Ehlers danlos syndrome by my rheumatologist, but my geneticist thinks I might have either hypermobile type or vascular type, or a complete other condition called "sticklers", which I haven't looked up yet. (I do have some info on it from him, but I was so tired after the visit and then I had to work and serve at Mass so I haven't read it yet.)

I need prayer from you, dear anonymous reader... So I can be tested because my insurance provider doesn't usually cover genetic testing for these conditions. Each test will run approximately 10 to 20 thousand dollars to run. But, if I have vascular type ehlers any of my organs could just decide to come apart without warning signs.... And if it's sticklers, I could have retina detachment and possibly end up blind. Obviously I'm praying selfishly to be spared those two outcomes and just have the lesser of three crosses to bear; hyper mobility type ehlers. In all things I'm reminded of our savior on the cross and of the little flower of Jesus, our dear Saint Therese... May all my sorrows, fears and all my pain be united to the Cross and let me bear pain so others may be spared or see the way to Christ. Amen and amen.

Tonight my Priest related a story of an excited 3yr old who led her uncle to the living room to gaze at a fine china Nativity set. She was asked by her uncle if she knew what it was, and she excitedly said "yes!!!!! It's breakable!"

    The fragility of the baby Jesus, who came to be completely broken for everyone...to be broken for me....it's very heavy on me tonight. I'm so accustomed to thinking of myself as fragile or broken, and I'm glad to be reminded by my Priest tonight to unite my brokenness to Jesus', and my sorrow over my barrenness to the sorrows of our Mother's heart. I am spared through my medical conditions ever having to lose a child, while she has sorrowed to see her child born to die for all of mankind. I can only marvel and pray and cry thinking about it all.


Merry Christmas, dear ones.

Monday, December 23, 2013

Extra love all around!

No lie... Adding a new family member is joyful and also stressful.


I know it's dark, but if you try really hard you can see my cat Mayhem curled up like a heating pad on my hip bone. Poor baby has been spending a lot of this past week hiding behind the couch. She's a total lap cat, and my lap is her only true hang out. Ever since we've brought Charlie in, she and her sister, Mischief, have been a little put out. Charlie is only 9 months old, and the girls are 8 years old, so the age gap equals an energy gap. Charlie wants to play and they want to sleep on me.

(That's Mayhem.)

This week has been amazing, but also very tiring for everyone. It's the holiday season, so all routines are scrambled about, and then Charlie is new and learning every moment it seems, and he doesn't have a consistent schedule yet because we don't have one. I'm very much looking forward to Christmas, so I can take him to the park and get his energy out by letting him play with other dogs.

One of the things I battle is constant pain and fatigue. I feel like I've been put through an old style hand cranked clothes wringer.

God's blessings abound even admid ruffled feathers and exhaustion. I am so happy to have my husband, cats and puppy to come home to. I know we're going to change dramatically in a year's time, and I'm already antsy to see how. :) 

Okay, enough rambling. I've got a doctor visit in the morning, Charlie gets his stitches out tomorrow, and right now I have a purring fluffy buddy willing to warm my aching hands. Good night!

So where does the "A Zebra" part of my blog title come in?

It's common in the medical world for young doctors to be told "When you hear hoofbeats, think Horses NOT Zebras." Meaning when symptoms add up to a common illness, assume it's the common illness. The problem is, people like me who have uncommon illnesses frequently miss the treatments they need because they get the "brush off" from medical professionals.

I can't even begin to tell you how many times I've been checked for various forms of arthritis to explain my constant pain!

This year I switched primary care doctors.
   When I went to my doctor and presented him with a print out of a condition called "Ehlers-Danlos Syndrome" and asked him to check into it for me, he said he would not because I was stretching too far for an answer and I didn't need a permanent label. I'll be honest that it made me see red. The symptoms and all the images of hypermobile "tricks" I was seeing on tumblr, pinterest and google images were all things I thought were completely normal for everyone, and was starting to see were actually not.

I visited my friend J. M.'s doctor and he said "Looking over your file it's worth checking into. If you have it, you need support yesterday. You're already 27. The onset for this condition is usually unbearable during your early 20's and if you have it you need relief." So, that doctor sent me to a rheumatologist. I no longer see her because her office is so disorganized, but she said "I can tell by your elbows right this minute that you have hypermobility. Let's get you the once over and put you into physical therapy to regain 25% of your legs' use, ok?"

So I went through grueling PT in the hopes of improvement, only to see my muscle tone is so poor that it didn't help at all. I was sent back to the primary care who referred me to a geneticist.

I see the geneticist tomorrow.

You have to fight like a zebra if you are one. I'm kicking for an answer as hard as I damn well can. I want to regain my life and my zest for it. I want to be independent again. I want relief from this constant pain.

It's been five days!


Charlie is beginning to fit in so well with our family!

Our cats haven't quite accepted him yet, but they tolerate him enough to do family nap time.

He's a normal puppy when his harness and bandana are off. It took quite a few minutes to get his attention for this picture. ;) I'm surprised how quickly play is transforming into real help. We were playing this morning and he gently play nipped (a normal healthy person would not come close to bruising), and I cried, and ended up having a pretty major panic attack. Charlie licked my wrists and leaned his weight into to my shoulder like a human hug, and placed his chin on my back. It was so comforting that it stopped my mental storm pretty darned fast! I've never recovered from a panic attack so quickly.


Every night I drag his bed down our hallway and put it at the foot of our bed. I told him to get "baby" and heel. He ran over, grabbed it and did a little jump into line at my left side. I was struggling to bring the bed and I dropped my cotton handkerchief. (I try very hard to not use unnecessary paper products). I have been doing a small load of laundry every night, and trying to get Charlie to pick up things and put them in a basket and he showed no interest, when all of a sudden tonight, I drop the hanky and Charlie stops, drops his toy, picks up the hanky and nudges my hand! "Drop it, Charlie!" And he puts it in my hand, picks up his doll and wags his tail like "see? I'm smart." I told him excitedly and in a high pitched voice "good boy, Charlie! Thank you so much! Good boy! Let's go night night!" And continued. He practically pranced in heel all the way into the bedroom. 

He is such a sensitive boy. God sure knew who I would need and vice versa!  A little reassurance and praise goes a long way with us both. We feed off each other's smiles and happiness. :) 

We have a long way to go, but I'm so encouraged already!





Tuesday, December 17, 2013