All we can do is keep breathing

Charlie and his new flamingo toy

It's been a long month. To be honest, it's been an emotional roller coaster of a month. I find myself randomly crying, and fainting, and laughing. Charlie always makes me laugh.

I'm still hurting over my Grandma passing away, and the fact that we weren't there when she died. I know it's unreasonable and unrealistic, but it's there in my mind.

I've recently seen a neurologist and had an MRI and an MRA. (The most expensive pictures of me that have ever been taken!) I go to see him again tomorrow to hear what he sees going on with my brain. I've been really angry and sad this month regarding health. I know it comes in doses, and I will have renewed perspective and resolve possibly even tomorrow. Right now I just want to take my body off and get a respite from it.

The neurologist said he doesn't understand why no one has mentioned Marfan syndrome to me, because I have long limbs, skinny wrists and chronic pain paired with flexibility. So now yet another rare thing is possibly wrong with me. Russian roulette: EDS, Sticklers, Marfan.  

My insurance sucks. It's better than not having any, that's for dang sure, because I've been there, and that's why I lived with all this crap without seeing doctors for 5 years. Still, they want almost a thousand dollars upfront before they will run an EEG on my heart to help hunt why I keep passing out.

Yesterday I had a scare in public. I was alone, Charlie was training and I was on my lunch break at work. I went to a smoothie shop I tend to frequent when I have spare change and the shakes, because they use real fruit and veg paired with turbinado sugar. I digress. I fainted in the shop. I think if they didn't know me, I could have been robbed by a stranger, or had another ambulance called. I was super hot and flushed red. 90 degrees apparently is too hot for me to be out in now. I have these handy ammonia bars that you snap in half, and the smell reaches me even when I'm out. It's like a lifeline that guides me back through the void. It's a nasty lifeline, because it smells like cat pee, but it's a help.

My primary care physician quit on me. I have to start the hunt for a replacement now. I have an appointment on Friday to check out a new possible doc. I'm going to hit her with everything I have and see if I scare her, or if she's willing to deal with a patient that's a bit knowledgeable and frustrated with the journey.

I have had some great support this month from family and friends though! My parents have been a rock for me, and my mother in law sent me some cash support to help pay for the extra health cost. My friends Janelle, Leah, Rachel, Sam, Monica and Hollee have been amazing support too. Constantly bringing me out of my self made shell of protection made from the emotional equivalent of tissue paper and barbed wire. Thank you for being my friends. Your love is true and so much more helpful than any medication or medical help I can get. I love you!

Matthew and Stephanie, thank you for coming to our place and keeping me company. It was so nice to have a weekend away from my version of reality - to just chat and watch BBC comedy together, and to play with the pets. I love you both.

I just want to be ok

I have gone back to work and my former routine. I'm in need of the break I had as a permanent change, or I need a change in my medications to deal with it all. I'm sorry I haven't posted. I haven't taken any pictures lately either.

Charlie and I went to Mass for the first time last night. I tried to sit in a spot that wouldn't be a distraction to anyone. (Apparently it was our annual Return to Confession service) He did really well. I only had to stage whisper to him twice - other than that, he followed my hand signals for standing, sitting and laying down. The young mom in front of our pew accidentally dropped her container of cheerios for her toddler, and it spilled in front of charlie. He obeyed my whisper, even though he really wanted it, and he left the "treat" alone. Then, when it was time for private confession, apparently where I was sitting was to become a confessional for the guest priest, so Charlie and I left. There were so many people there, I knew I couldn't stand in line, and so I just left. I'm the first to admit to you I'm not a great Catholic, but God is a great God. I'm hoping he can understand and forgive me for not staying.

I've just been really depressed and depleted since my return to work. As soon as I got back, I had to catch up on everything I'd missed, and cover for a co-worker who is recovering from a double mastectomy. Then, unexpectedly, our part time coworker broke her leg in two places and is out, so I'm also doing her job. I'm not doing such a great work of any of it. On top of that, MetLife is refusing my application I submitted before my leave of absence, and I'm now owing the company 40+ hours of PTO I haven't even earned yet, otherwise I wouldn't get a paycheck. So now I'm united with my Supervisor and HR rep, arguing with MetLife that I AM eligible, and DID apply in time.

My Grandma's health keeps getting worse, my sister lost her job, my other sister is on the other half of the globe and I just want to be with them. I want to go back to childhood before my health made it so hard to move, and before I was ever depressed.

I'm sorry for no updates. I am trying.

Feeling like myself again.

First, a huge thank you shout out to Mr. Swanson for sending Charlie a specially selected homemade version of a barkbox!!!

Charlie still hasn't finished the rawhide stick! That's a first!!! Usually rawhide treats last up to two hours only!!

Thank you!! 

--------------------------------------------

I had a visit from my dear friend JM yesterday, and was able to go to knit group today! I'm feeling much more like what I think of as how I should feel.

 Every day I've gotten up at whatever time my body decides. Some days it's before 7am, and others it's around 11, but then I get up gently, and go feed all the critters...Zeus outside, mischief and mayhem and then Charlie inside. I wash my face, and sit on the side of the tub to comb my hair, and then I walk with Charlie back to the bedroom to put on day clothes and make the bed. Charlie brings me everything I ask for (some days with only one request, and other days it takes quite a bit of coddling). By this time, the inside cats are done eating and eager to "help me make the bed" aka run like wild beasts under the sheets chasing out wrinkles and playfully grabbing the blanket as it settles down.

Then it's my turn to actually eat. I've been washing face, combing hair, and EATING every day of my leave (except those first two days. I slept). I'm very proud of this. Most days while working I've been washing my face, throwing on clothes and dealing with my hair in stop and go nightmare morning traffic. NOT girly or professional at all! And then I just sleep all weekend, leaving all the chores undone. No dishes or clothes washed, no bed made, nothing done.

 ...So I take my first three daily pills with Breakfast.

Then I sit until I feel better, but it's not so bad because I have Charlie who is willing to play gently or bring me the remote or iPad, and I have mayhem to use as a heating pad, and mischief to look at (she really is pretty....and a touch me not to boot! )

When I feel better, it's usually time to take Charlie out and feed him his elevensies (he eats like a hobbit! 4 or more times a day...a cup at a time) and maybe get his help loading the dryer, or taking him outside so we can both try to get vitamin d exposure (the lab results came I and I'm very very low on vitamin d. 1000 iui wasn't registering in the recent blood work, and I've been on it quite awhile.)

Then I am tired again, and give myself permission to be tired and lazy, because I have paperwork saying I have to be restful or I will not be allowed back at work, so I chill out and watch Charlie gnaw a bone, or we watch a nature documentary with lions or dogs. My stomach rumbles, and yay! It's a whole ten steps to the kitchen instead of a long walk, elevator ride, long walk and scarf it down because you have 20 minutes plus more walking to make sure you're at your desk on time.

I take as much time as I need for my throat to accept the food, and I'm not left feeling bruised and exhausted, because I took the time to eat each bite so I don't pop my jaw, like I do I while hurrying. It's time for the next round of meds, and I fight it just a bit, because I don't want to sleep while I'm alone with Charlie,because he's a baby and needs full attention.

After that, I might wipe the big counter and load my few dishes, and then rest and knit, or practice commands with Charlie, but at 3pm, I know to expect husband home, and when he does come home, Charlie bursts to full life and activity, rough housing with him and I know I can nap if I need to. 

That's just half a day. 

I love my career, and feel like I am helping to save lives. I'm looking forward to going back. I will be honest that I feel much more rested here at home, and it's refreshing to take this sabbatical. <3

Charlie has been busy!

I'm still on medical leave from work.

Charlie has been a great comfort to me. He's picked up all sorts of things he's never encountered before! A bowl, my iPad mini (it was on its side), an empty egg carton, a small Tupperware dish! He's been helping with the laundry, getting my shoes and practicing at curbs with me.

Charlie has also been busy eating cow bones, playing ball, tugging rope, catching his baby doll mid-air, and catching up on sleep and episodes of "too cute!" On netflix.

Today was a huge day hat left me physically drained, and I was really glad to have him with me. I wonder sometimes if he gets overwhelmed leading such an active life with me...or if he regrets picking me at the shelter. He doesn't seem to, but I am starting to really count on his help.

Here's a picture of my special boy!

He wanted my eggplant "Parmesan" (gluten and dairy free alternative)! No begging, buddy boy!

2 weeks...

I saw the doctor today. I've been put on two weeks leave from work, to focus on my health. I'm not gonna lie, it's a hard pill to swallow to admit that all my efforts over the past few month haven't been enough to pull me through, and they also haven't helped me take care of myself. All my efforts have backfired on me, and it's causing a faster breakdown.

sigh.

I wonder if I'll finally have the energy to make food for myself. I wonder if I'll get anything done. I wonder if I'm going to have renewed energy to try again and have better balance, or if this time off is going to reassure me that I really do need to fight tooth and nail for disability again.

I've got two weeks to figure it out.

The fight for "Control" and "Normal"

I'm paying for the long weekend excursion of the Birthday party.

It's not pretty.

For the first time ever I've given in to the pain and I'm wearing my bulky white "LOOK AT ME!!!!" cervical collar at work. Learning to honor my body's limitations is a biotch. I constantly juggle pride, pain, need and wants all in the effort to achieve "Control" and "Normal". I read an awesome article that related chronic illness and embarrassment and it sums it up in a very healthy way. (http://chroniccurve.tumblr.com/post/15070372449/embarrassment-and-chronic-illness)

I came in to work, pulled up in the parking lot and all I could remember was the fight I had with myself the first time I used my cane in the work place:

Brain: "Everyone's going to stare at you."
Beth: "They won't stare for more than a moment in shock."
Brain: "They're going to want to know what happened. If you were in an accident. They're going to be nosy and you'll have to answer them all."
Beth: "They're going to be curious and worried for me. They're not going to be nosy. I'll just have to tell them.
Brain: "You know it's not fair that you have to advocate everywhere you go. Just keep the cane in the car. You only wobble a bit, the pain is nothing. You've hidden pain before. You haven't fallen this week. You can just keep it in the car."
Beth: "Bite me. I'm going in."


When I got inside, of course I clocked in as fast as I could, used the least used hallways, ducked into bathrooms when I heard footfalls and finally arrived at my cubicle. I was able to get by without a single comment for all of 30 minutes.

People are naturally curious. It's not a sin or a shortcoming. It's a gift. It helps us check into the softer side of our nature with compassion or to analyze problems. Sometimes curiosity leads to great discoveries.

It's hard to choke back pride and the desire for self resiliance when your body is failing you though. It's hard to push on with bravado when you don't want anyone to pry. The first encounter with someone commenting on my cane was a trusted friend at work and he saw me walking from up ahead of him. "I don't like that, Ms. Beth!" he called out. I answered as cockily as I could with a wink: "Nobody asked you. I love the butterfly design." (He only meant he didn't like that my illness was affecting me so much.)

I'm constantly facing the truth that I can't really fight for "Normal" and "Control". It will burn me faster than jumping into a bonfire. I battled the choice to get a service dog for so long I've driven everyone I know to the brink of their ability to be patient with my waffling back and forth! And then it was: "Do I go with this agency? Do you think we can go without one? Can we afford a dog? Will work allow it, or will they find a way to phase out my job posistion (like what happened to a dear friend)?"

Every single day is full of choices. Sometimes I get so freaking sick of all the 50/50 of my life. Today's choice was unbearable pain in my neck, or open myself up to comments and concern but be in less pain. I chose less pain.

I'm the farthest thing from a role model, but Spoonies, PLEASE choose in favor of honoring your health - be it mental or physical. Otherwise your body/mind will beat you to a pulp. I promise the comments and concern sting less than the flames of a bonfire that will burn around you if you chase "Normal" or being in "Control".

Our friend "H"

Our friend, "H" came by today and brought Charlie a rawhide treat! It's his first rawhide ever - and I think he's in love. I wish I could have been there to visit with H and see Charlie's reaction first hand, but I'm sure he'll hand me a slobbery mess of rawhide when I do get there. LOL!

Look at his coat! It's so shiny and healthy! I was petting his ears this morning when I dropped him off with Granddaddy Dadid, and I didn't want to go. I had errands to run before work, but I just felt like staying curled up in a ball with my boy. So far two guests have RSVP'd to his party! I went and got the plates, napkins and forks. :) I've been reading different recipes for cake, and I've decided I want to have real cake for the people at the party, and I'm going to make a dog food cake for the pups. :)

My medicines are working again! Yay! I feel better after I take them. The pain management dosages keep it all at a numbed down version of the pain. If I had a few days I'd hibernate from relief!

...My friend Hawk sent me a starbucks card this week, so Charlie and I got a coffee and puppichino on Sunday. It was so nice to sit outside with Charlie at my feet, a warm coffee in my hand and a gentle breeze blowing. The staff at my local Starbucks knows Charlie now, and are always supportive. Since he's still in training and a bit rambunctious, the only store he's stepped inside has been pet stores. We just go through the drive through, and then pick a spot outside to sit together.

At work today we found out by accident that our Big Boss has decided to tear down our cubicles and put us all in a row like a telemarketing call center. They're going to cover the windows and have us side by side. I'm losing half the cube space I have now. I hate that. My cube is the one place that is orderly and perfect. I can find you a file in under 30 seconds if you ask me for it. I decorate it once a month after I get off work, so it's always fresh and interesting to look at. I believe in the mission of my job, and I'm so passionate about it - but I'm discouraged. I spend all my energy at work, and have no social life, and then it feels like all these changes at work are just picking away at my spirit. If I have to take down my personal stuff it will be the last straw.

....I spoke with the Geneticist again, and he apologized. I'm glad I called because he forgot that he was supposed to be fighting with my insurance provider so I could find out what my final diagnosis is! This morning after doing some of my errands I stopped by the eye clinic and it turns out the reason my new glasses have been giving me so much trouble is because the frames aren't fitted correctly. So the uber cool frames have to go, and now I sit and wait again. I don't really care for the new frames - they're tortiseshell - but if they finally fit and I can see without a fishbowl effect, I'll be satisfied! The good news is that the eye doctor said my retinas look firmly attached, so I'm taking that as hope that it might not be Sticklers Syndrome after all.

Well, my darlings, my coffee break's over and I must go forth and stand on my head. ;) Take care until we gossip again!

A message to my Spoonies:

Good morning star shine, the earth says "hello"!

We got up at 4am and took my husband to work.

It's raining like crazy, and today I discovered Charlie

Is afraid... Of umbrellas.

He had to face his fear of the weird sound of rain on

The umbrella, because he can't have fear and not try

To overcome it to help me. I'm really proud of him! It only

Took 5 minutes, and although he was uneasy the whole 

walk from the car to the front door of my Mom and Dad's,

He did it and was focused on obeying my order to stay at

"Side" (perfect 'heel' on my right hand side.)

We had a nice nap, and now he's warming my feet while I 

drink a coffee and try to get going again. Gotta be at work

In an hour and get off at 5. I'm exhausted just thinking about

The remainder of our day. At least he'll be warm and with my

Family, learning and having fun! And at least I have these 

moments of snuggle time to get me through until we can 

cuddle again.

I just feel so sore all over. I twisted something in my ankle

Last night, and it hurts like the dickens. I hate fighting

Chronic illness on the weekend. It's when I usually get to fall 

apart and not battle it. Oh well! Gotta keep fighting!

Another day another dollar.

"Momma! Wake up! It's morning and I brought you a sock!"

"I'm a good boy. I wake you up so we can play!"

"....you're not supposed to say 'good morning, baby!' and then stay in bed."

It's been a real cold few days! Nothing like up north or the Midwest, but still. Very cold. Poor Charlie has to wear one of my old night shirts when he goes outside so he doesn't shiver so hard.

We went to our friends' house and he got to meet Cletus and Ellie Mae. Cletus is a weimeriner mix and Ellie Mae is a pit bull. He had SO much fun with them, but it really made me take a second look, because in my mind Cletus was the same size as Charlie and in reality Charlie's head is twice the size, and he's an inch taller than him.

I was really disappointed that Charlie thought it was appreciate to pee on the table leg and amp speaker. So embarrassed too. He's been so well behaved indoors that it was shocking, and then that feeling was compounded with guilt because we hadn't visited with our friends for a few months and our new dog decides to unleash waves of mellow yellow. ::le sigh::

...my medication is still not being tolerated by my system. I read online if you're throwing up and having muscle spasms or twitching to call your doctor, so I did, and called the pharmacist as well. After 8 hours of throwing up, missing work, sleeping too much and back and forth with the doctor, they all decided it's psychosomatic and I must keep taking the generic. Let's unjust say I want to punch them all in the face, or make them feel how I'm feeling. To be completely honest, it takes all the starch out of me when people don't believe my truth of what I'm facing.

  I'm tired of fighting a nameless, faceless chronic illness. I'm constantly pushing myself at 100+% and can only achieve a maximum of a normal person's 56%. It's depressing. I'm tired of fighting so hard.

Today a coworker said "I don't know why you're not on disability. You should take that government money and stay home or travel!"

I have no energy to explain or confront. I wish I could hibernate for a little while.

My family has been really supportive, for which I can only thank them. 

I'm just feeling adrift. I'm glad I have Charlie and my kitties. They bring pure joy, and don't judge me for my illnesses or choices - something I wish I could cut myself slack for, but never seem to be able to do.

So sick of professional idiots.

My insurance, doctor and pharmacist are set out to kill me if they can.

They decided to give me a generic instead of my normal prescription, and refused to give me the real drug without an order from my doctor. He wrote the general order form for it because there was no generic on the market, which resulted in me getting a generic by surprise last night when I went to get my refill.

The pharmacist argued with me that she was trying to save me money, and basically bullied me verbally, like I was stupid for trying to demand my brand name pill which costs almost $40 a month versus $4. It's a complete waste of breath arguing with her, because she's able bodied and doesn't care or understand what it's like. I've battled so long to get a drug that works, only to have this happen. You see, I ALWAYS get sick off generics. Currently I have some kind of congestion pounding away at my face like a thousand mini jackhammers, and so I said "screw it! Give me the damned things. I just want to go home!"

Well, I took it this morning and what do you know? I barfed up my innards like no tomorrow. Twice.

I called the pharmacy to see what fillers and inactive ingredients are in it because I can't have gluten or dairy, and she didn't effing call me back! So now I get to spend my whole weekend trying to keep down a pill I need to function as a human being. Basically my only off days are ruined and she doesn't know or care. I have to wait until Monday, try to get ahold of her and the doctor too. I want to slap the pharmacist for arguing with me. I don't care that she went to college and thinks she knows what the frak she's talking about. I want to slap her for her disbelief ruining my only off days in the past two weeks on a weekend no less!

Not to freak anyone out, but it's possible to have a seizure if you just up and stop taking this pill.

I don't have the energy for this bullshit.

It's like when my insurance tried to strong arm me into having my pills delivered. They sent letters, cards and constant phone calls, even after I verbally rejected them. "It will save you time and money, as well as stress. No more keeping track of when your refill is due! Straight to your door! Cheap!!"

It's not cheap if I have the generics delivered and have no way to correct it. It's not cheap to have to take off work to make it to the post office in time because they WON'T deliver it to my door, as I live in a small flat and our mailbox is the size of a flea wearing spanx, so I have to go pick it up at the post office in town when they're open. Oh, and unlike the pharmacy, the post office is in a historic building with marble steps which are impossible to climb, and no motorized cart to sit in and wheel over to the pick up window.

It's like when phlebotomist say "you need to be a big girl. I got this with a regular needle. I know what I'm doing!" In response to "my veins are tiny, they roll and collapse easily. Please use a butterfly needle."

I'm just tired of professionals thinking they know better than me and that they can argue me into submission, when I'm the one stuck with this body 24/7 365 days of the year! I believe I know more about my body than you, buckaroo!!!!

Groceries

Mischief -----^

            ^------ Mayhem

         ------^ Charlie Majors

Spoon theory: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I am out of spoons. Food isn't even in the pantry or anything! I'm just glad it's inside the house!  Sorry I haven't posted much of anything interesting about Charlie's progress. He's a great, silly, playful puppy. He's a little dee dee dee (check Carlos Mencia), but he's learning. He's already figuring out he can literally open doors for me. ;) Tonight he kept trying to give me my socks right after I took them off. Lol

Not a good day.

Nothing good to report. Bad mental health day. Lots of rain and freezing temps, so Charlie didn't get to play today, resulting in a short attention span and lots and lots of puppy energy. Dislocated my elbow and shoulder tonight. Totally sucks.

Here's a picture of us watching Alabama before they got slaughtered in the first half of the Sugar Bowl:

Charlie the nurse dog

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

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.

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.

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.

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.