And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

And So I Ran Her Over

8:46 PM

When you utilize public transportation, you are handed some of the best comedic experiences of your life for the low price of $0.35 each way - along with the pleasant odor of unwashed humans and a host of germs that have mutated to wipe out entire populations. Today I was greeted by the call of "hey redhead", which did a lot to endear me to the little old lady right from the start as I am still in therapy over the multitude of Little Orphan Annie jokes I underwent as a child. She then immediately begins to put me through the Spanish Inquisition regarding my apparent disability. 
"How long have you been in a wheelchair?"
"You sure do have a mess of contraptions on your legs. What are those?" (THOSE are my KAFOs that cost a small fortune and which enable me the movement to kick you, should you come closer)
"What do you mean you got sick?" (Um, my body stopped working right?)
"Can they fix you?" (I don't know, let me call the vet and ask for a price on that. I have a disability, I am not broken.)
"What did you do before you were confined to the wheelchair?" (I am not confined to anything, I utilize a wheelchair which allows me access to the world. I don't see any ropes tying me up in it!)
"Do you live alone?"
"You live JUST with your mother? Where is your Father?"
This is an abbreviated version of about twenty minutes of her interrogating me about my disability, my use of a wheelchair, my braces, my life in general. I bit my tongue and decided it was better to educate her than to let rip with any number of the smart remarks I had in mind, including the basic "this is none of your damn business". However, she began to refer to me as "Oh you poor pitiful thing". I HATE pity. Pity is cursing in my world. Empathy is appreciated, treasured but flat out feeling sorry for me and thinking you are better than me because I have a disability pisses me off. She started to use "Poor pitiful thing" as if it were my name. I bit my tongue. I took deep breaths. And then, when I was getting off the bus I ran over her toes. The poor pitiful thing just couldn't steer that cumbersome wheelchair she was confined in well enough to avoid her toes, especially with those enormous contraptions on her legs. :)
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One of These Things Is Not Like The Others

8:08 PM

I received this award from Lynn at Autism Army Mom.

Here are the rules for this meme (apologies for the original award but I changed some of the language to make it appropriate for my journal):

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes.  It's so bad that not only did I use COMIC SANS, but there's even a little freaking jumping, celebrating kitten down there at the bottom.It's horrifying! But its presence in your award celebration is crucial to the memetastic process we're creating here.

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some crap up, we'll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we're just on the honor system here. I trust you. Except for the 4 that you lied about.! 

3. You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about. I don't care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don't really care.

4. If you fail to follow any of the above rules, I will  hunt youdown and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don't know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I'll leave you alone. I'm serious. I'm going to do these things. 

**NEW** 5. This one isn't actually a rule, but once you do the above, please link up to the Memetastic Hop so that I can keep track of where this thing goes. 

My 4 lies and 1 truth:

1) I am a member of a secret society. Now I must kill you for knowing.
2) I fell while walking across the stage at my college graduation, showing everyone my underwear. 
3) I legally drank before turning 21.
4) I have a tattoo above my buttocks that says "Made in China".
5) I once made my niece clean the bathroom floor with her toothbrush.

I pass this award on to anyone who wishes to participate.
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Ups and Downs

6:20 PM

I wish I had something brilliant or hysterical to write about, but I have spent the last week since my Dysautonomic crash recovering and sleeping 16 hours per day or more. That was definitely one of my worse crashes and one I would like to avoid. The actual written protocol that I have in my medical binder of records and other pertinent information, because doesn't everyone have one of those, to treat a crash is to carefully infuse fluids until my blood pressure begins to rise to my normal, treat pain as needed, and call the neurologist with any questions or concerns. Living in a small town, the local drs have no familiarity with someone as complicated as me and thus my neuro wrote out a treatment plan. Also unfortunately triggers are not easily avoided. They include things like getting too warm or too cold, being in a loud environment for too long, bright lights, flashing/flickering lights, stress both emotional and physical, low blood sugar, forgetting to drink enough (because I have no sense of thirst), and pain. Stress can actually include positive emotions like being excited about something. Things I can no longer do because of the triggers include going to concerts (I love music), going to movies in theaters (I have about a 60/40 odds of triggering a crash if I go see a movie, not in my favor, from the rapid flickering of the film and the loud soundtrack), attending any crowded events, being outside in summer. Yet even if I avoid all triggers I can still crash for no apparent reason, seemingly out of nowhere. This is something that it took a long time for my family to understand, that I really was sick at virtually every family get together because it was so stressful, loud, and crowded. Now the stress has been reduced a LOT, and as you can see from the video of the wrapping paper fight I did fine this year.
This coming week I have two doctors appointments that I have delayed just a wee little bit. So I have been having almost daily fevers for the past, um, two months or so. Sometimes Tylenol works, sometimes throwing in an illegal Ibuprofen finally works, sometimes they are stubborn. I know dysautonomia impacts my body's ability to regulate temperature so I am going with that being the cause, but I have a feeling my internist is going to be a little unhappy that it has taken me two months to come in and mention this to him so we can eliminate other possibilities. Actually I am taking bets between the internist on Monday and the hematologist on Tuesday as to who is more angry with me for my "ignore it and it will go away" approach to medicine. Hematology is my yearly checkin since I am on Lovenox (injections of blood thinners) for Lupus Anticoagulant (blood clotting disorder) after having had a stroke (RIND) when pieces of two blood clots in my arm broke off and went through the hole in my heart (PFO - we did not know about it until afterwards) to my brain. I think I may be bounced back to the GI doctor/nutritionist since even though I have recovered the ability to swallow, my stomach seems only able to tolerate simple grains like corn flakes, bagels, toast, corn chips, and rice. If I eat anything more complicated, especially a protein, I become very nauseous (Thank God for Zofran!) and my stomach hurts. Yet I am gaining weight as if preparing for a famine.
I will try to write something much more entertaining this week. If nothing else I can write about freezing to death tomorrow when temperatures are in the single digits with negative windchills and I am waiting for a handicap accessible bus to take me to my doctor's appointment and the fun of wheeling through snow and slush. Tomorrow I will be wearing enough layers that I will be able to do a wicked imitation of the kid in A Christmas Story "I can't put my arms down!".
Thank you for reading this!! You Rock!!
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Anatomy of a Dysautonomic Crash

11:06 PM

Yesterday I experienced one of my more severe, most dreaded Dysautonomic crashes (also known as crises but I prefer the term crash as it is very much like suddenly slamming into a brick wall doing 60 mph and crumpling to the ground). I had simply gone to the pharmacy to pick up three much needed medications and this act resulted in my body being unable to process the input it was receiving and I went from functioning to slamming into that brick wall in about 10 seconds flat. The typical crash goes like this - my blood pressure peers over the edge, contemplates the alternatives, and then plummets. It is secretively a sadomasichistic entity that loves to torture itself and the body in which it dwells by climbing peaks and throwing itself off of them, never knowing where it will land. I develop a headache that makes my migraines look appealing and that is impervious to pain medicine. Laying absolutely flat - no pillows, no incline at all- in a pitch dark room and not moving a muscle can take a little of the edge off of the headache. I am dizzy and if I try to move into an upright position frequently tap dance very close to passing out. Nausea follows the headache, and last night I ended up vomiting. Impressively, I vomited in the dark into a trash bag lined garbage can and did not miss a drop - nothing on the bed, nothing on me. I am a professional. My heart rate does weird things during these crashes and it frequently alternates between skipping beats and throwing extra ones in for the fun of it. This started at about 4pm yesterday and the fun did not end until sometime around 6am. I finally fell asleep around 3:30am after being able to slip some meds into my stomach and convincing it to keep them down, but at that point I still had the massive headache.
Today I am in the "hangover" phase in which it feels very much like I have done 10 rounds in a boxing ring, then gotten run over by a semi truck as I crawled home. I slept basically all day today as my body tried to reset itself, and I have been having to try to push fluids to make up all the ones I lost out on. If I am going to feel this hungover, I at least want the night of drinking before hand and the embarrassing stories to go along with it. Preferrably with pictures and or video. I have never even been near drunk, but I know what a hangover must feel like, including the little man who pranced in a field of manure and then danced a jig in my mouth while I slept last night. Evil little creature!  The frustrating thing is that, while I can avoid known triggers of these crashes, they still happen out of nowhere and slam me hard and fast and viciously. All that seeking ER treatment would do would establish IV fluids, there is no other treatment plan for these crashes as any medication administered has a risk of triggering another extreme reaction. I do have access to zofran, pain medication, and reglan at home but they only do so much. This is a part of living with Dysautonomia that few people see, that few people understand, and that does not neatly fit on a checklist of daily living skills for assessment.
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10:32 PM

According to the government of this great country, I do not qualify as being disabled. I have been denied Social Security Disability and now must begin the oh so fun process of appealing. Looking at my alphabet soup of medical conditions and the severity of the dysautonomia and dystonia I would really hate to see how ill they would like me to be for me to qualify on the first go round. I am working with a company that deals with Social Security Disability, courtesy of my Long Term Insurance company, and so today we began the additional reams of paperwork over the phone. I think I am now responsible for killing an entire acre of the Amazon Rainforest for all of the paperwork completed. My medical records may be responsible for half of the deforestation. So as she is asking me questions we have the following conversation.
Her: Could you do your previous job today?
Me: **Laughter** Oh wait, you are serious? Lets see, I can't hold my arms over my head to blow dry my hair but sure I can pick up and position children weighing 50+ pounds. It was full contact teaching, not sitting at a desk and reading aloud to students.
Her: Could you work for 8 hours?
Me: **Laughter** In one day? Or across a week? There are days my blood pressure is so low I can not sit upright, and I take two strong antinarcoleptic medications and still sleep 16+ hours a day most days. Plus I don't have the ability to sit upright that long without severe pain.
Her: If you could work would you?
Me: **Indignant snort** Do you really think that at 29 I would rather spend most of my days stuck in this house or doing the job that I got the best education in the world to prepare for and loved more than anything?

I think one big issue with my application  is that even with all of the diagnositc testing and specialists we have yet to arrive at a clear cut diagnosis. We can diagnose the symptoms, we can treat symptoms, but we can not identify the main disease or disorder that is causing all of the damage. It is believed to be something genetic but beyond that we have eliminated but not identified.

My biggest fear, or concern, is that I had been praying to qualify for Medicare before my COBRA insurance coverage runs out. Michigan is a "skip state" which means something like we skip the first appeal and go straight to the second and more comprehensive appeal. This translates to a process that generally takes 7-34 months. Without access to health insurance, it will be a mute point to determine if I am disabled or not. I am holding on as hard as I can to God's promise to provide for all of our needs in His perfect timing.
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Insomnia and Internet Access

2:32 AM

Unlike the world's cutest now eight year old pictured above, I can only fall asleep sitting up on the rarest of occasions. In fact, tonight I can not sleep period. I feel like a character in a bad Dr. Seuss book on sleep.
"I can not got to sleep tonight
My sleeping thing is just not right.
I could not, would not in the bed
Not with a fancy pillow for my head
I could not, would not on the couch
That left me feeling like a grouch
I could not, would not on the floor
I can't get down there anymore
I could not, would not with my iPod
Not even after I politely asked God
I could not, would not with a guy
Well only cause none showed up for me to try
I could not, would not count the sheep
They went on strike with Little Bo Peep
I could not, would not with the prescription drugs
At maximum dosage I am not even buzzed
I just can not go to sleep tonight
And by now I am quite a fright
Please sleep let me try you out for a while
Insomnia is not my style!"

As if bad rhyming ala Dr. Seuss was not enough, you now get the priceless opportunity to read whatever comes floatng from the muck and the mire to the front of my addled brain and out my fingers. I probably should not have internet access when dealing with insomnia!


* I actually had to speak the phrase "Excuse me ma'am but could you please retrieve your dog from my leg" this week in the elevator. Apparently her dog did not have a banana in his pocket but was in fact very excited to see me and hopped right up on my foot rests and decided my leg made a hot afternoon date. I just thank God it was a miniature something and not a Great Dane!

* When picking up prescriptions at the pharmacy, the pharmacy tech sees me and automatically goes over to the spot for my last name and searches through it. We hit the motherload as he returned with a sack of meds. The sad part was when he asked me if ten sounded right for the number of prescriptions, not only did I have no idea if that was correct (God Bless Automatic Refills) but I also knew I would be back in a week or so for more.

*According to Social Security I am not considered Disabled. This sucks Ostrich Eggs and means we have to go through an appeal. It also makes me wonder how much more screwed up I need to be to qualify! I honestly think the problem is the lack of a cut and dry diagnosis. That and they are all could use some preparation H in a jumbo tub.

* While at the mall last week, I politely informed a man who kept stepping in front of me that I would not hesitate to run him over. He said I needed a horn, to which I replied he needed a rearview mirror to check before lane changes.

* I am such a total geek/nerd. With the iTunes gift cards I received for Christmas I have been downloading documentaries that I never get to see in a theater because I live in The Middle of Nowhere, Michigan. Just like I prefer nonfiction books to fiction books, I prefer documentaries to regular movies.

* I scared and confused the crap out of a small child while shopping at the mall. There was an item hanging from a high rack that I wanted and no one anywhere to be found willing to help me. However, there was a child about three or four years old staring at me intently from the child seat of a shopping cart. So I did my "Amazing Standing Cripple" act and unbuckled my feet, undid my seatbelt and held on to the rack while I stood up long enough to grab what I needed. When I looked over at the poor child she had a look of pure confusion and shock on her tiny features that in all honesty was hilarious to me. I want to hear how her mommy explained that one to her!
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New Year

6:35 PM

I am not a fan of New Year's Resolutions because they are generally unrealistic changes that result in a sense of failure by the end of the month. Besides, if something in my life needs a change why should I wait until a specific day of the year to change it? I do like the idea of an entire year spreading before me untouched, unwritten, unformed, rich in possibilities and hopes and dreams. I like beginnings and fresh starts, but really we get those every morning when the sun rises and we are given another day.
Things I would like to accomplish in the new year are a renewed sense of appreciation for everything in my life. I have recently (starting sporadically last year and consistently in October) begun listing 5 things every day that I am thankful for that are specific or connected to that day. It makes me recognize the multitude of little blessings as well as the big ones. So that is my "resolution". I could add that I would love to try my wheelchair out at a skate park and see how much air I can catch before I (fail to) land, or that I really would like a diagnosis - even a custom made one just to humor me would be appreciated like "yurskreewid disease", or that I would love to watch the weight I have added from taking steroids and other meds to increase my blood pressure combined with limited activity melt away but really I first need to learn to love myself however I am. Besides, failling to launch myself into hang time or getting a diagnosis or lose weight are in a lot of ways out of my hands, but gratitude is within my control.
And so for the record, today I am thankful for all of you who are reading this, for tylenol to bring down my daily fevers (yes, I know I need to call the doctor as these have been going on for over a month), for every step I am still able to take even though they require assistance, for the escape in music and audiobooks, and for hope and dreams.
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Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

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To read a post, just click on the title for that day's post and you will be taken to the entire journal entry. If you click on the photograph, you will see that picture enlarged.

Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.