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

Hope

6:51 PM

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.

My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!
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For Which There Are No Answers

11:46 AM
I grew up a child of a seriously ill parent. My mom had her first stroke when I was in preschool and has gone on to have five more significant strokes, not counting TIAs. She has Lupus and Antiphospholipid syndrome. Her left knee has been eaten away by arthritis and it is starting in on her hands. Her heart caused frequent issues. I knew how to call 911 before I knew how to dial a friend's phone number. I should be used to medical emergencies. But she is also my best friend in the world, the one person I have who understands me without the need for words, the person who is always there when I need someone, the one who has faced this monster along with me. She literally fought to help me learn to eat again, fought for me to not give up in finding adequate care, fights to keep me walking around the apartment as long as possible, refuses to accept anything less for me. And I fight for her.
So now when she is lying in an ICU bed on a vent with more lines running into her than I can count and an open abdomen from emergency surgery that they could not close due to infection and swelling my heart is breaking and my world is turning upside down. Never before has she been so sick that I couldn't talk to her, and I would give anything to hear her voice. I have cried myself to sleep the past two nights. I have fallen on my knees before God and cried out in prayers, many that had no words to them. She made it through the first two days without going septic, so that is very important. She shows her temper when they mess with her and gets royally pissed off when they move her or change her bandages, which lets me know she is still there. She seems to be calmed by my voice when she opens her eyes in panic, and that means the world to me. Today the doctor is taking her back in to surgery in an attempt to close her abdomen. This is not going to be a sprint but a marathon, and I pray for endurance - for her body and mine. Stress does not do nice things to dysautonomia. I took this morning off (my brother and sister in law are with her) and will go up to the hospital for her surgery. I just want to know why, and I know there is no answer. I want to know if God thought that we didn't have enough to deal with, because I am not strong enough for this. Most of all I need my Mom to be okay.
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Going Bananas

4:07 PM




Fake banana flavor should be considered cruel and unusual punishment. As a child I had to take Ditropan in liquid form for a while because the dose I needed was not available in pills and no one though to do math with pills. It was the most horrendous, torturous fake banana flavor. I hated bananas themselves for years after that. So when I squirted the first mouthful of Nystantin in my mouth to treat the thrust that is a bonus gift from two rounds of antibiotics I was horrified to find it sticky sweet and tasting of bananas. I swished and gargled and swished some more then spit it out quite indignantly. How dare they make this medicie I have to take 4 times a day for a week taste of cloyingly sweet rotten bananas? When I went to find solace in my Mom she had the nerve to tell me that she knew all along it was banana flavor and hadn't bothered to warn me! Nice Mom, I know where you sleep!! It is almost worth keeping the field of fungus to avoid that flavoring!! Hey, I wonder if I could grow mushrooms on my tongue? or moss?or lichen?


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Peeking

7:55 PM


I don't know where I have retreated for the past month, but it has been somewhere inside where I feel like I do not have to be anything for anyone and I can deal with life on my own terms. The start of the school year is always hard for me as I watch children and teachers prepare for the return to the classroom and I am reminded that there is no classroom for me, no children eagerly greeting me each morning, no lessons to plan, no rules to break. Add to that the fact that a vast majority of my friends are married (or have just done so) and are now having babies and I freely admit to jealousy at times. I was born knowing how to nurture children, I was born with a heart of a mother and yet this will never be for me and it hurts. I can not safely have any biological children, nor would I risk the chance of passing on the genetics that have caused me to be sick, and no one will ever allow someone with such health disabilities to adopt. When I was a teenager I kept a journal of letters to my future children. So it is mourning for a dream.
Three of four weeks ago I did have my Botox injections done and they have been very successful. This time with a combination of the blood thinner and Vitamin K deficiency I looked like one very bloody human voodoo doll that was held together with gauze and tape. My final bruise is almost gone. I wish I had KAFO braces to wear as they would do so much good, but due to Gollum (the pituitary microadenoma) and the steroid to keep my blood pressure up and my complete inability to get any exercise I have been steadily gaining weight and my braces from last year no longer fit. And at $800 a pair I can't just get another set made.
Six weeks ago when I last saw the endocrinologist he asked me whether or not I thought the medicine he was putting me on would work. Knowing that nothing ever goes easily for me medically I said no. He looked at me strangely and said he thought it would be a huge success. With five days before I see him the medication has done nothing. Sometimes it stinks to be right, but I did tell him so. I sound like such a pessimist, but I have yet to have a first treatment attempt for anything work including most infections.
I have an appointment with a new neurologist on the 24th as the one dr would only be able to see me if I had tested positive for mitochondrial disease (I had funky DNA but not in a known pattern - I created my own) through MDA. The neurologist I saw previously has said with my best intentions in mind that she has no idea what to do with me anymore and this is over her head. I actually appreciate it when a doctor admits that they don't know and are in too deep. So I will be seeing the wife of the MDA doctor so that they can work together to treat me and she has more experience with the "weird and unusual".
I have been listening to a lot of my audio books, which are my escape and my entertainment and my lullaby at night. I find focusing on reading a regular book harder now, which totally pisses me off because I used to read a book in a day or two and now I struggle to get through a chapter. The audiobooks give me the magic of books in a way that is less stressful and easier to access. My iPod is almost evenly split music and books. I greatly prefer nonfiction so I have learned about the Missionaries of Charity and Mother Theresa, the motivations of radical Islamic terrorists, how one girl followed God and is creating massive change in a community in Uganda, the occupation of Tibet and the flight to freedom on one family, and so much more.
My father gave me an air compressor to help inflate the tires of my wheelchair which seem to slowly leak out as I take curbs and such. However, the nozle thingy on the end was old (everything else is new) and it leaks so in the process of trying to put air in my Mom and I managed to flatten the tire. That takes skills to flatten a tire while using an air compressor. My poor brother got a desperate phone call and had to come over to fix the mess we created. Even he had a hard time because the dratted thing has to be held in with force as well as down to get any air into the tire, so I don't feel quite so inadequate. My Dad is going to replace the defective part next week and then I should be good to go. My worst nightmare is getting stuck with a flat tire, cause its not like I can hop out of the chair and start pushing it home.
I will try to update again soon and stop withdrawing so much, but I also have learned that however I feel and however I need to cope are normal and acceptable on this journey. I can't do it how someone else would do it, I can only live out my journey one day at a time.
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A Post With No Name

7:25 PM

It has been a long time since I wrote here, and yet I find myself struggling to come up with anything interesting enough to bother with a post. So I think this will be a series of small posts, or whatever happens to come out of my fingers as I type.
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On my birthday I had the HIDA scan done of my gallbladder. The first hour was easy, just lying there as a dye collected in my liver and gallbladder. It was boring but I have had longer MRIs so I could easily pass the time. Then they bring in the syringe of misery. This is the hormone that causes your gallbladder to contract. He warned me it "might cause a little nausea and cramping". Okay, that is like saying the Pope might be a little Catholic. It is injected over five minutes, and within seconds of the first dose I was violently nauseous and felt like I had been kicked by a mule. And each time he added more medicine it upped the fun factor. I begged him to just slam it in all at once and get it over with, but that was a no go. The nausea and pain lasted about 20 minutes before abating. I don't have any results yet because on the day of my follow up appointment I did something stupid involving a shower and was in too much pain to go. I now have proper respect for the shower.

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The day after my birthday I went out to eat with my mom, my brother, and Little Bit (my 6 year old niece). Little Bit had very proudly chosen my birthday card so it not only had holographics but played music at an ear splitting decible when opened in the restaurant. :) She loves those musical cards. Its so cute, she signed it herself and managed to misspell her own name. She was showing off a new dress she had gotten when they went back to school shopping and talking about the great conundrum because the had not just the dress in that style but also a skirt and a shirt and she had the hardest time deciding which to get! I had a feeling she might be a bit of a princess when she had to have access to the floor to ceiling mirror at 12 months to approve or disapprove whatever outfit I put her in for the day. Yet she is also tomboy, playing in mud, fishing with her dad, and taking karate.
I ordered crab legs for dinner (they are low fat and don't hurt my stomach as I do not use the butter). I can not figure out how to eat crab legs without things going flying and generally making a mess. Little Bit decided to point out to me that I was being "very messy eating your crabs, getting it all over the table. I informed her I was not taking etiquette lessons from the child who two minutes earlier had two macaroni noodles stuck in her nose to look like a seal.

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Gollum (the pituitary microadenoma) appears to me a prolactinoma. He is sending out mildly elevated levels of the hormone that causes my body to think it is pregnant or nursing. It is possible that the low levels are from my polycystic ovary disease and Gollum is doing something else. We will recheck everything in October, but I am starting a new drug to bring down the prolactin levels this week. I really like the endocrinologist. He is trying to look at the whole picture of my presentation, as he feels that there ae too many diagnoses and something should be able to explain most of my issues. He is a well respected and highly published academic doctor so I am hopeful he may find something.

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I will try to write more soon, more that is humerous and not so boring. Just not a ton of things going on right now, and it has been too hot for me to go out of the house lately. I did go to Target on Tuesday and today for medications and a little wheelchair bowling on the side :) I also took some birthday money and went to my favorite smelly stuff store (Bath and Body Works) and stocked up on hand sanatizers and lotion. Today I had to replace my expensive earphones for my iPod. The others got a short in them and only one ear worked. I hate having to buy the expensive ones, as it feels like shoving money into my ears, but I sleep with my iPod on listening to audio books and so the earphones need to be comfortable, durable, and have good sound to them. I also found a pair of long pajamas with owls on them so that made me very happy! Owls make me very happy!

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Thirty

11:18 PM

Thirty years. That is thirty more birthdays than the doctors predicted I would be alive to celebrate. Thirty more years of life. Thirty years of tears and laughter, of falling down and standing back up, of wonder and amazement, of learning and learning again, of sacrifices and blessings, of giving and accepting, of seeing through the artifice, of passion and determination,of family and the most incredible friendships, of love. In thirty years I have laughed more than I have cried, I have gotten up each time I have fallen down, I have never surrendered to the definitions expected of me, I have been blessed to love some of the most incredible children God has put on this earth, I have learned the power of forgiveness, I have seen the human soul at its most fragile, and I have learned to live without fear of judgement. Over thirty years I have witnessed sunrises and sunsets, chased fireflies across a field of wildflowers, climbed haybales and slid down, splashed through a mountain creek, slept beneath the stars, jumped in mudpuddles, danced in the warm spring rain, received flowers from someone who loved me, walked the ocean shoreline on a crisp spring morning, sat around a summer bonfire, learned to see the world through the eyes of a child. I have been richly blessed in thirty years. I can not count all the blessings that I have received, but I know that they number more than the stars in the sky tonight. I am ever thankful for these thirty years and however many more I am given to not just live but be alive.
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Name it and Claim It

9:30 PM
When I welcome some thing new into my life, it just does not feel right until it has been given a proper name. My computer is named Elphalba after the wicked witch of the west (and I named her correctly!!). My wheelchar is Nessarose, sister of Elphalba who had no arms (my chair has no arms) but could perfectly walk with enchanted slippers. My coffee maker is Klaus,a German in Lederhosen whose speciality is coffee instead of beer and he knows not to talk to me before I have had my coffee. My electric teakettle is Gretel, wife of Klaus the coffee maker, a round and happy Frau who occasionally just has to whistle with joy. My car had a name, like I had a car. Seeing as it is gone we won't bother going there. My ipod is named prism, for through it come music and stories of every color of the rainbow. I have three stuffed animals "Who", "What", and "I don't Know" in tribute to Abbot and Costello. Right now my printer goes by the name "useless pile of scrap metal". I have never named my TV, although my brother named his big screen TV Roxanne and the kids know that if they hurt Roxanne things get ugly - really ugly. So it makes sense that when something moves into my body and sets up shop that I name it too since it is now a part of the crazy thing called me. The spot on my right lung that we have no explanation for but that has never changed is named Bob because I spent a year trying to get someone to at least rescan and it felt like I was always asking "what about Bob"?  My digestive system is named Walter, and it is a very complicated story. But Walter farts can kill. So I have two unnamed additions to my body and that just will not do. One is the pituitary microadenoma that I was taking names for. The other is an assumed lipoma (the scans are unclear) on my left arm that has been there for years but is now growing. So first place in the name that tumor contest goes to Gollum, my hitchhiker in my brain. Second place goes to Peeves, given the honor of being the name of my long term friend in my arm. Prizes will be distributed.
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Some Wishes Bite You in the Arse

1:36 PM

I have been wishing for answers for the GI symptoms, for the neuro issues, for the dysautonomia, for the weird random symptoms, for the whole package to be wrapped up in shiny paper and topped with a bow. Well that wish can keep looking for a star that will let it hitch a ride. But I did get a few of the wishes within the genre granted and it turns out perhaps I should have been more specific because they seem to have come around and bitten me in me arse. My neurologist of all people figured out the severe nausea and stomach pain when I eat most anything other than simple carbohydrates. It should have been so obvious that I am now, more than ever, going to be switching GI doctors in the practice. My body, it turns out, is incapable of absorbing fat. Any fat that goes in up top comes out down below and causes as much misery as possible along the way. Now what we do about this I have no idea, I am hoping that we will work this out at my next GI appointment in a week or two. But it is an answer. Then I got the results from my brain MRI that was done almost two weeks ago. We did this one to try to diagnose the reason I have no sense of thirst, so we did a special focus on the hypothalamus and pituitary glands. My brain as a whole was structurally normal. The hypothalamus passed inspection. However, the pituitary gland has a hitchhiker. The pituitary gland is 9mm in size and I have a 3mm microadenoma that has decided to make itself at home. Anything under 10mm is a micro and adenomas are almost always benign. So it is a little guy, but he wasn't there on my last MRI and I would prefer he not grow. So I will be seeing an endocrinologist at some poing in the near future to see what effect the little guy is having on my body. Little guy needs a name. Any suggestions are welcome. I wished that we would find something tangible to explain some of the intangible symptoms, but perhaps I needed to be more specific once again.
I am very tired, so this is going to be short and strictly medical. I apologize. I will try to do a regular update very soon!! Thank you so much for reading and caring!!
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Bad Girl

3:57 PM

Yesterday I was a very poor representative for those of us who use wheelchairs as I allowed my sarcastic temper to have fun. I was frustrated because I had wasted 45 minutes at the lab because the doctor forgot to mention to me that I needed to be fasting for my vitamin levels to be checked. Then the mall was crowded and apparently they have not heard of air conditioning because I swear it was cooler outside than inside. So my first victim was an older guy that I got stuck behind in traffic heading to Target where I needed to get my 14 prescriptions. He was talking on his cell phone and would suddenly just stop walking, causing me to have to suddenly just stop rolling. When I was finally able to clear him, I pulled up next to him and informed him that suddenly stoping like that could be dangerous for his health and I added in my opinion of his intelligence.
Victim number two was a teenager working at Auntie Annie's pretzles. I should point out I was wearing a white skirt. I ordered a pretzel and a medium drink. She tossed them onto the counter in front of me and gave me my change. I was about to put $5 in the tip jar because I know they work for less than minimum wage because they can receive tips when she just up and walked away. She did not dry off the drink cup, she did not offer me a tray, and she did not offer to carry the items to the table a whole 15 feet from the stand. I muttered loud enough for her to hear "thanks for the help. there goes your tip witch" only I did not use witch. I am bad. It was a bad day. I had just spent $200 on medications and missed the bus by 5 minutes. I dried the cup off with napkins and stuck it between my knees, like I usually carry things when in pants, and balanced the greasy pretzel paper sleeve on my lap as I wheeled over to the table. I was victorious.
Victims number three were a gaggle of older women walking in a long group across the hallway of the mall. I had picked up some good speed because there was a slope downward. As I approached they realized I was not steering away and broke off into two groups. Passing through I announced "score, 7-10 split". 
Victim number four was on the bus. He was blatantly staring as I got on the bus and was being strapped down. It was not your usual look of curiosity but rather "eyes are falling out of the head staring". So I looked at him and said "It's called a wheelchair". Missed opportunity to educate but it felt so good to just stop the staring, living in a fish bowl feeling.
In more positive and fun news I totally messed with the mind of the customer service worker at Payless. Due to scheduling issues I missed my June Botox appointment which means my feet and legs are as tight as can be. Shoes are a challenge and trying to put my braces on is a joke. Well we came up with the idea that ballet slippers would be perfect because they are so soft and giving, and its not like I am walking in them. So I was looking at the different sizes when she came up to me and asked "Can I help you find what you are looking for?" I replied very happily "No thanks, I have found it. I am just debating size." There was a long pause and then she answered with a shakey "Oh, okay. If you need anything just ask." I can not imagine what was going through her mind when a chick in a wheelchair is buying ballet shoes. I never explained and left her perplexed.
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More Randomimity

3:50 PM


Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"

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Oasis in a Desert

I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!

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Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.

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Tummy Time

Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.

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Heat Hermit

Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.

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Happy 4th of July!!
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Things that go Pthhhht

11:02 PM




I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!



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A Budding Grafitti Artist

12:41 AM




Kevin was a child whose developmental delays were clearly a result of his home environment and not a result of any intrinsic disability. He, and thus we, reported abuse on numoerous occasions but no one listens to a three year old boy with speech delays and a fear of strangers. Kevin was prone to extreme rage which he could not identify nor figure out on his own how to regulate (this was an IEP goal for at least two years). He also lacked impulse control. One day we had been coloring with markers for art and I had put the bucket of markers out of general reach, but still within reach of a climbing child I would discover. The children were playing nicely in centers when all of a sudden Chrissie came running up to me and announced "Kevin is drawing on the walls!" I looked and sure enough, Kevin was using a brilliant blue marker to decorate the imaginative play area, drawing on the walls and the table and the play kitchen and a few dolls. Calling him over, I asked him what he was doing. With an angelic face he answered "Graffiti." 
"Kevin, we do not have graffiti in my classroom. We respect our things."
"I sorry."
"I am glad that you are sorry but that was a bad choice. What happens when we make bad choices?"
"[things] we don't like."
"Now you are going to have to clean up your grafitti,"




I filled a small bucket with soapy water and plopped in a sponge. I then supervised as Kevin scrubbed away every mark of his graffiti. The problem was he seemed to be having fun cleaning, so I decided that we would extend our grafitti removal project. So with bucket in hand we went to the two other special education classes and did some more cleaning until it was not fun anymore. Each teacher also played along, acting horrified that Kevin would write graffiti on his classroom walls and toys and talking about what a bad choice that was. When we walked back to our classroom, Kevin barely cleared the ground with the bucket he was lugging.
"Kevin, do we do graffiti at school?"
"No ma'am!"
"What happens if you do graffiti?"
" You clean it. And clean more."
"So are you going to draw on my walls again?"
"No Ma'am!"

After that day Kevin turned into a marker monitor, making sure they all had their lids on and that none left the tables. He always reminded me to put them away in the cupboard after we used them. And he never wrote on anything other than paper and appropriate materials again. :)
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My redundant life

4:04 PM


It has been a while since I have written because my life is rather lacking in the excitement value. Each day seems a lot like the next: lather, rinse, repeat as necessary. There are slight variations - today I am laying on the couch in my blue and pink plaid pajamas, yesterday I laid on the couch in my colorful owl pajamas (I love owls). I may switch up what kind of cereal I have for which meal, and there was the huge moment when I had corn on the cob instead. We lost spring to a month that pretended to be winter and now to a month pretending to be summer. It has been over 90 degrees on multiple days already - I live in the North for a reason! I did my dues in the South! So I have been trying out different ways to start/write this post:

It was a dark and story night... Um, isn't every night dark? And while we have received enough rain for me to call Lowe's and ask if they had Gopher bark in stock, we have been blessed to avoid the storms. Scratch that one.

Once upon a time...  Oh no! This almost always guarantees a prince, and the last prince charming I met was anything but charming in the end. If that was a prince, I am now accepting dates from frogs.

Long, long ago and far far away...Lets see here. This delightful disorder has decided to turn my memory into a very short term process so that kills long, long ago. And far away? I don't think that Target counts as far, far away.

In a galaxy far away... I may have my head in the clouds a lot of the time, but the rest of me resides solidly on Earth. Besides, I would probably get starship sick.


There once was a man from Nantucket...Too predictable.

There was an old lady who swallowed a fly...  One, I have accidentally swallowed bugs that have blown into my mouth and it is retched disgusting. Two, there is way too much mean on that list for my stomach to handle and I would be down for the count long before the horse.

Old MacDonald Had a Farm... I have cleaned up enough poop in my life between my niece and my students. We are not adding animals into the mix!

This is the house that Jack built...  Lets see here...this is the stain where I spilled the coffee on the top of the pajamas I wore while lying on the couch that needs rebuilt?

OK, that is all of the "creative" introductions I can think of and not a single one works. So I guess I am out of ideas for today, but I will try again this week. Perhaps I will bring out some of my favorite stories of my children from teaching. "There once was a teacher..."
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GI Doh!

8:28 PM

I feel like I need to apologize for all of the years that I took eating for granted and never appreciated it the way that it should be appreciated. These past two and a half years have taught me many things, including that there is so much more to the process of eating than I had ever appreciated. I have a far greater respect for how much work many of my kids do just to eat.
I had last been to see the GI doctor last May when I was having another fun round with severe dysphagia and serving as a taste tester for infant foods. The muscles finally got their groove back and I figured I was good to go. There was one hitch in the "all is better" though. It turned out that the only foods my stomach would accept without extreme reactions (pain, violent nausea, vomiting) were simple carbohydrates. My meal choices were narrowed down to breakfast cereal, oatmeal, bread, bagels (I occasionally still choke on those), rice, tortilla chips, pancakes, mashed potatoes, and macaroni. Oh, and I can tolerate milk and small amounts of cheese and freeze dried peaches and apples (to make eating them easier). This diet not only got old after a while - cereal for three meals a day is not something I recommend. The other concern is that I am missing huge aspects of a healthy diet like protein, and potassium, and a multitude of other essentials. What is also annoying is that I am eating very little, and have double checked by measuring calories, yet I am consistently gaining weight. Do you know how annoying that is? My third concern is that I get severe pain behind my right ribs at times, after I eat. So it was back to the GI doctor.
The GI doctor and I apparently were not at the same train station at that appointment because he was focused on the occasional difficulty swallowing that has remained after the dysphagia which is not an issue. I was focused on the above issues. The two trains kept passing but never meeting. He even admitted twice to not listening to me as he was writing (doodling?) on a notepad. In the end he insisted I have another swallow study done before we look at anything else and I agreed to prove to him that I was right when I said I can swallow.
So I had the swallow study done yesterday to please the GI doctor. I hate this test because Barium has its own specific definition of disgusting. After a feast of Barium, the surprising results were that I can swallow fine. As I was waiting for the bus I noticed my mouth felt weird, but I attributed that to the fact that I had drank thick barium and eaten barium coated crackers and not been given anything to drink afterwards. I got home and was not feeling good so I took some benedryl for my allergies and laid down. I am so thankful I took benedryl. When I woke up my mouth still felt funny and my throat hurt but I still didn't connect the dots. I had to chug milk anytime I swallowed anything like my meds and I could not eat dinner and laid back down. It was not until evening when I looked in the mirror at my tongue that I discovered that it was swollen and covered in "hives"/raised sores. I had my mom look in my mouth and throat and it was all fire red, swollen and covered in the same "hives". I am betting these go all the way down into my stomach given the pain when swallowing and the stomach pain. Apparently in between the last swallow study and now I have developed an allergy to Barium. Now I know that the ER was probably a decent idea, but I could breathe fine and my ER copay is a great deterrent. I called the doctor today  to see if maybe he could call in a round of steroids but he said to go to the ER. That copay is still a great deterrent and since it was not getting worse I decided to keep taking benedryl every 4 hours and stick it out at home as long as it does not get worse. The upside to this, once my tongue fits neatly back into its allocated spot in my mouth and I can swallow and talk normally again (I currently sound like I have been hitting the bottle hard as everything slurs together), is that I never have to do anything involving Barium again.
So next Tuesday I go back to the GI doctor to go over my results (I already know - normal, duh!) and see what we do from there. I have an idea - lets look at something other than swallowing! I can get the food into my stomach, it is convincing the stomach that it is food that is the problem!
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What Goes Up.....

12:04 AM



Tuesday I had an appointment with my GI doctor (quite possibly my soon to be replaced GI doctor but that is another post) which is on the second floor of a brand new medical building by the hospital. I arrived a little early, only to find out that regardless of my 3:30pm appointment time the doctor was not expected in the building untill some time after 4pm. I need to learn his procedure days and refuse to take appointments on those days. So I read an entire National Geographic magazine, and the great and mighty doctor finally appeared. As I was wheeling back to the exam room I crossed paths with him and he stopped in his tracks and looked at me as if I has grown a third eye that was winking at him. He asked me how I got there. Okay, now I know the doctor has had a long day but what the heck is going on? I stare at him. He informs me that the elevator is broken and he had to take the stairs. My mind immediately goes into that place where you run through eighteen different scenarios at once. I am new to this wheelchair stuff, I don't know what you do when the elevator breaks while you are on an upper floor. So we decide to proceed with the appointment and pray that the elevator is resurrected during that time. The appointment sucked (more on that in another post) and towards the end the nurse comes in to report they have no time estimate on how long it will be before the elevator is repaired. I now start thinking if I could slidel down the stairs on my butt safely with someone carrying my chair and just how many bruises that would result in. On the same floor of the medical building is pulmonology, and they happen to have a patient in a wheelchair as well. Their nurses, being smarter, called the local fire department to come carry the patient downstairs so I am just going to be added on to their work order. Have I mentioned that last time someone tried to carry me down stairs I fell and it sucked? So first two EMS workers show up, apparently in case I get dropped rescue workers will be right on scene. I really don't know their purpose, the little chick EMT carried my purse down the stairs and my wheelie bars. Then the firefighters arrived. This is one hell of a way to meet cute guys, but I didn't mind a few of the views I got. :) They then explain they are carrying me, in my chair, down the two flights of chairs and I have to be tipped back to the same angle as the stairs. I think I hit a record new shade of white. But what choice did I have? I informed them that I was more than "nervous" and they encouraged me by saying they had already done this once so they wrked out the mistakes on the first guy. Two flights of stairs have never seemed so long in my life as I bumped along. Seeing as my wheelchair already needs some repairs, I was waiting for something major to decide to go as we were going down the stairs, like the back which is already askew. When we got to the bottom I was ready to kiss the ground, had I been able to reach it. I had to wait for EMT chick to come down with my purse and wheelie bars so the fire fighter and I were talking. Lord help him, he is cute but I wonder about the brains. He asked "Was the elevator working when you got here?". Seriously?? I looked at him and said "Nope, I hopped my wheelchair up all those stairs." Dude, Here's your sign.
I now pray over the elevators that I get in that not only will they get me up to my destination safely but that they will return to get me when I need them and safely restore me to dry land. I can do without the fire fighter escort.
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My Amazing Mother

11:00 PM
Most mothers give their infants life once, which is a beautiful miracle, but my mother spent a year in her life breathing life back into me and giving me life again and again. I was born an apparently healthy infant, bald as bald could possibly be and full of attitude, and giving no signs of the genetic disease that was already written in every cell of my body. When I was five months old my mother was rocking me to sleep while watching a movie on TV. She did not want to miss the end of the movie, so she laid me on a blanket on the ground rather than taking me upstairs to my nursery. When the movie finished she discovered I was grayish blue, not breathing, and had no detectable heart beat. The monster in my genes had decided to rear its head in the form of relentless apnea. My mother learned infant cpr, I was hooked to a monitor, and no one ever slept through the night. Our address became well known to every fire fighter in our small town and they did not bother to knock on the door if a call came in, they came through the door one way or another. Yet the apnea was vicious. After one particularly prolonged episode at 6 months of age, my parents were taken to the little room no parents ever want to go to and informed that I was profoundly and terminally brain damaged with a life expectancy of less than six months. The recommended course of treatment was to leave me hospitalized or placed in an institution until I died naturally of another episode. My mother refused to give up on me. She informed the doctors that I was a child, not a used car that you return and replace because it is broken. I went home with her that day. The apnea continued up until my first birthday, but my parents persevered and delighted as I met every milestone. When I started to read at two and a half, my mother realized that she was in for a totally different ride than any of the doctors had tried to prepare her for.
My mom has been my biggest supporter. She believes in me even when I am unsure. Without her support I never would have had the courage to apply to Vanderbilt, let alone done well enough on the scholarship weekend to win a full Deans honors scholarship. Without her support I never would have had the courage to apply to Virginia to teach and I would have missed some of the most amazing children that touched my life, and an incredible friendship with a friend unlike any other. Without her support I would have never had the strength to go through the torturous ordeal of relearning to eat in early 2009 when I had lost the ability to swallow, and I would be dependent on some sort of artificial nutrition. Without her I would not be me. I would not have my very keen sense of justice, my heart for others, my willingness to risk getting hurt to love those who need it, my passionate way of living life, my foundation of faith, my wicked sense of humor, and so much more.
So not only has my mother given me life more times that we can count, but she has shaped that life and given me the strength and support to be the person I have become. I an blessed to be her daughter, honored to be her friend.
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Spring Kaleidoscope

12:46 AM

Spring used to be one of my favorite times of year, but now it is bittersweet. I still love the crisp bite as fall snaps back as it recedes (eventually, someday), I love the sudden explosion of green everywhere, I love the brilliant sunshine that emerges after the rain, I love the endless variety of flowers each as if painted by hand. I love how everything is bright and new and alive again. I love to go out in a fresh spring rain and chase puddles to splash just because I can and to twirl in the raindrops falling down with my arms open wide.
The bitter part comes because this was always a particularly active time as a teacher, with IEPs to write and end of the year excitement to plan and the joy of explorations outside for hands on learning, and the delight of seeing how far my kids had come in one school year. We always went on a Bear Hunt for Easter because everything had to be secular, and the kids followed directions of prepositions like over, under, on, around, through to find stashes of small toys until at last we reached "the bear cave" where they creeped in and found a box of bears to choose a special friend from. In May we hatched our own butterflies and watched them grow from egg to caterpillar to butterflies that we eventually set free. I was always amazed that my not so "gentle hands" never killed a butterfly in their eagerness to see them and get to them. We made special mother's day gifts and cards, and father's day too because that came after school ended and I loved being creative with these. We baked cookies, cut up fruit for fruit salad, made invitations and sent them out, decorated the tables, and set them so we could enjoy a Mother's Day tea made and served by the children (with assistance as needed). We planted flowers and watched them grow, each having a day with the important chore of watering and measuring them. There was always out water day when I asked for the kids to be sent to school in swim suits with a change of clothes and we took the huge water table, buckets, a wading pool, and every water toy ever invented out into the hot sun and just splashed until everyone was content. On the last day of school I set up a carnival in our classroom with a pinata, classroom games like bowling and bouncing frogs and pin the tail on the donkey and matching ducks and face painting and lots of balloons and bubbles with prizes at each game and special snacks. Then each id received their goodbye package from me - a framed photo that I had taken of them during the year, a photo CD of all the pictures I took, a new book chosen just for them, bubbles, and a small toy or stuffed animal.
I miss all of those classroom adventures. I miss the wonder of finding a ladybug and the lessons that came naturally from it. I miss the wide eyed wonder watching a butterfly come out of its cocoon. I miss the laughter, the fun of learning, I miss getting good and messy in the name of education. I miss my kids.
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My Easter Miracle

7:00 PM


As I previously discussed in an earlier journal post, I lost my health insurance on March 31 when my standard 18 months of COBRA coverage ran out. I faced a huge conundrum because the school district (Dante's Inferno level 14) gave me 10 days official warning and no information regarding programs available post COBRA. Strike one - a personal insurance policy would cost me a fortune and provide enough coverage to last about two weeks. Strike two - I am in appeal with Social Security so Medicare is out. Strike Three - Medicaid required a three month process of submitting documentation and waiting for some grand governmental diety to determine if I am indeed disabled before I could receive any services let alone the cost due to me making too much money. But God never accepts a strike out. There is a little clause that the school district (may they enjoy their spot in the Inferno) never notified me of which states that if you are disabled when you start COBRA or become disabled while on COBRA you can apply for an extension of coverage at the end of the 18 months. I found this little tidbit out doing research online. Strike one - they require a letter from social security and I am in appeals. Strike Two - the school district hates me with a passion and would hate to have to give me more benefits. However, I was able to establish that given that social security is in appeal, a letter from them is impossible to obtain, and so we went with documentation from my medical team. My neurologist is my hero because he wrote the most kick butt letter listing out every diagnosis I have and explaining that I am 100% medically disabled and severely disabled. Less than a week after them receiving this letter I received a letter in the mail. I HAVE MEDICAL INSURANCE AGAIN!!!!! It is for 11 months, so it ends February 28, 2012 but that gives us so much more time to work on things!!! ANd the miracle continues - I never had to pay a large sum of money for a prescription, I never had to stop taking a medication because I could not afford it, and I never had to go without necessary medical care!!! God ROCKS!!! I was terrified as I watched my medication supply deplete and knowing I could not afford to purchase the next refill. I was wondering if I would survive long enough for Medicaid to decide I was disabled or if the lack of medication would prove the point before then. To be blunt I was scared of dying and I feel like I have been given back my chance at living again. I know it sounds dramatic, but my health care and medications literally keep me alive. Thank you to everyone who prayed, who offered good thoughts, and who cared. I burst into tears when I read the letter because it was such a weight lifted and fears dissipated. Such a lesson in the fact that God provides exactly when it is needed and I should have trusted all along instead of wasting my time on fear.
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Waiting For Superman: Two and a Half Years in the Trenches

9:35 AM

For two and a half years I worked for a large public school system in Virginia as a special education teacher. Our schools were site based managed which translates to the principals having absolute power over everything that happens at the school, with little accountability. To demonstrate this effect on student learning, let me compare two different elementary schools that I taught at. School One received a high percentage of students who did not speak English upon entering the school system and who tended to be a migratory population. Over 80% of students received free or reduced priced lunches, and it was not uncommon for entire families to live in single rooms of homes shared by multiple famillies. Special education numbers were relatively high. School Two was in an upperclass neighborhood where children entered with a high percentage of students having received a private early childhood education. A vast majority of students were fluent in English as a first language, less than 20% of students received free or reduced priced lunches, and the population tended to be stable. School One consistently performed higher than expected on standardized tests, and higher than most other elementary schools in the district including School Two. School Two had just average performance on standardized tests. School one had a culture of great teachers working together for the benefit of our children. School Two had a culture of every man for himself. School one put into place the resources the children required to learn including an ESL teacher for each grade level, a Spanish speaking assistant in each class in lower elementary, a highly accessible guidance counselor, and a school social worker who helped families access resources. School Two used resources for fancy technological resources and placed the blame for test failure on the students. At the first teacher's meeting of the year pictures were shown of students who had failed and "should have passed". The principal was an ineffective leader and an entire grade level had quit the year before I taught at that school. Teacher turnover was high and teacher collaboration was low.
In terms of poorly used resources, I can attest to the resources provided to my special education classes and purchased with school finances yet obviously given no thought. As a preschool special education teacher I had no need for the stacks of lined writing paper I received, or the scissors (heaven help me if I give a three year old standard scissors!), or the folders, or the binders, or the pencils (in fact we had our pencil sharpener removed so little fingers could not explore) or poster paints. What we needed and had to beg, borrow, and steal to get were things like construction paper, finger paint, velcro, batteries, and cleansing wipes. My classroom for children with multiple and severe disabilities had more writing paper, crayons, markers, scissors, notebooks, pencils, workbooks (!), glue, and poster paint than I could have used in three general education classrooms but we had no batteries for our battery operated toys and switch devices, no cleansing wipes, no adapted writing devices, no slant boards, no devices for the visually impaired, no construction paper, only three working push button communication devices for a class of 7 nonverbal students (so 3 at a time could communicate), no adapted computer until I brought in items I had received from a grant while teaching preschool, no velcro, etc. Each year I taught I spent an average of at least $500 of my own money to supplement the resources, or lack of resources, provided to me by the school district.
These are just some examples from just two and a half years of teaching. My teaching was interrupted by becoming disabled, but had I not I was planning on quitting with the district at the end of the third year with School Two even though I would have obtained the almighty tenure because I was so disillusioned. I was looking into private schools for children with disabilities that were less constrained by the public school attitude towards special education, where children came first regardless of perceived ability.
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Waiting For Superman

9:57 PM

This evening I curled up on the couch with my laptop and favorite blanket and watched the documentary Waiting for "Superman". I must first note my potential bias as having been a teacher and having a vested interest in the education system. That said, this documentary was heartwrenching in capturing the failure of the American education system. No child or family should have to pin their hopes on receiving a decent education on a lottery drawing because everyone from the parents in the neighborhood to the administration at the school know the local school is no place for a child. When money has failed and legislation has failed, thank you No Child Left Untested (No Child Left Behind) then something else must change. What worked 50 years ago is not going to work today. The first thing that every teacher, administrator, policy maker and legislator must agree upon is the belief that every single child regardless of preconceived notions of failure is fully capable of learning and succeeding. The next thing that  needs to be done is to get rid of the obstacles to radical change. Teachers unions are far too powerful in their ability to cripple efforts to make radical changes to how we educate children. I do disagree with merit based pay based upon the current assessment system as the testing completed is prejudiced against ESL learners, children with disabilities, and children from different backgrounds. I am all for eliminating tenure and making teaching like every other job - if you fail to do your job up to expectations then you lose your job. No free rides just because you made it through two or three years. We need to look at the schools that are succeeding, the radical schools that are breaking all the rules and defying all of the odds and learn from them. If we don't start to apply the lessons they offer to us, we are soon going to cease to be a superpower in the world due to a lack of educated populace. I would totally recommend this movie for any parent, anyone who cares about a child, or anyone who cares about the future of our society.
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I've got it....never mind

12:45 AM

I learned something new and critical to life today. The moment I utter the words "Oh no thank you, I've got it." whatever object I am referring to will come to life and voraciously launch itself as far from my body as is possible. The items become projectiles in a show of willpower and supremacy of inanimate objects over my ability to contain them. I went shopping at the magical, amazing local bookstore today and had my usual stack of books on my lap. A kind person asked me if I needed help with my items and I repliec "Oh no thanks, I've got it but I appreciate the offer." A minute later those books were flying as if possessed by literary demons and scattered in a semicircle around me as if a small explosive device had detonated. Now blushing, I collected the books from the floor with much difficulty and much shame. After purchasing my newest treasures (I had a gift card left over from Christmas- bonus!) I decided to visit the Starbucks at the store because it is the closest thing to a real coffee shop I can get to in this town. As the cashier handed me a tray with my Italian Soda and Banana nut muffin on it she asked if I wanted her to carry it to the table for me. I once again replied "Oh no thanks, I can get it but thank you for offering. Three rolls later and everything goes sliding forward at terminal velocity. Somehow by slimming my knees up as high as possible considering my feet are strapped down, jerking the chair backwards, and grabbing for my drink I manage the world's most ungraceful save and only encounter minor whiplash. I saved the Starbucks, which is the most important thing because a spilled Starbucks is worth crying over! So it seems that people asking me if they can help triggers some switch in the universe that causes my objects to scatter with great speed. So now I know if someone asks me if I need help and I say I am fine I should immediately secure all items in their full and upright positions and prepare for turbulance. :)
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Governmental Logic

1:01 AM

I do believe that the world has gone insane, and our government is leading the way. Two weeks ago I sent in the eighteen page pamphlet to apply for Medicaid, thus becoming complicit in the deforesting of an acre of rainforest. I called today because my insurance runs out on March 31 and I am becoming a little anxious here. It turns out that the program the social worker feels I best qualify for requires me to fill our more paperwork, because one acre of rainforest is just for sissies, and then send it to the state capital for them to decide if I am disabled. If I am then bonus, I have health insurance. If they deny it then I am screwed. The best part is that this is usually a three month process. Right. I tried to explain to her that I don't have three months, hell I don't have three weeks and she said to get samples from my doctors. Because doctors give out three months of samples of medications that cost $650 a month or injections that cost over $1500. Apparently if you are disabled and most in need of medical insurance they figure you can afford to wait three months to get it. So soon I will be picking and choosing which medications I purchase, discontinuing Botox until further notice, and avoiding labwork and doctors offices like the plague. There is one last ditch effort I can make to try and get insurance to continue and I plan on trying what I call plan desperate tomorrow.
Just for fun, this time after the Botox injections I ran into a slight complication. OK slight as in one of the injection sights became wickedly infected. No I did not go to a doctor, I bandaged it at home until finally I called the neurologist who did the injections because it was swollen, red, the size of a quarter and had an open sore in the center. Charming, I know. He gave me some directions and it seems like it may be slowly healing. I have had severe cellulitis before when an angry ghetto spider bit me in Pittsburgh, so I know what to look for and how much it sucks. That time I looked like I was smuggling a golf ball under my skin and there was a fun red line wrapping up my arm. This is no where near that bad. Although I do want to bring in the next of kin for the ghetto spider for questioning, just to rule them our for revenge. :)
Last time I promised a more up beat and witty entry and well, you can thank the Government for the fact that that one didn't arrive yet. I will try again later this week.
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Welcome Spring?

11:33 PM



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On Pins and Needles

6:43 PM

Yesterday was round three of the Botox injections, and hopefully not the last. Hopefully whatever replacement I find for my ending health insurance will cover Botox as it has been a tremendous benefit and provided relief. The photograph above is of the very old EMG machine used to check and make sure the Botox needle is in the right location prior to injecting medication. I liked the creepy mad scientist look it gave in the photo. :)
So the injections went as well as can be expected, and I am actually grateful for the fact that I have sensory loss in my legs because looking at him using the muscle to bend the needle back behind my shin bone it occurred to me that this should probably be painful. Yes, I supervise and watch because when anyone is coming at my body with a needle that size I prefer to monitor exactly what they are doing with it. Plus it is a control thing. I am noticing a pattern though. All three times after the injections I have crashed within a relatively short period of time. Yesterday was the shortest as I was not out of the office building and I was starting to feel dreadful. We stopped to get me something to drink so I could load up on meds, and then I focused on breathing during the hour and a half long drive back to my house. The drive sucked. By the time I got home I was beyond pale with a lite tint of green around the edges but I had managed not to vomit in my Dad's truck, for which I think I deserve bonus points. I was knocked out pretty much for the rest of the day. Today I am hung over not just from the crash but the day after Botox hangover - sore weak muscles, flu like feeling, low grade fever. I slept until noon today, woke up long enough for a cup of coffee, and then slept until 4:30pm. I will try writing a more witty, insightful, and informative entry some time this weekend but I am exhausted and foggy from the combo hangover. My poor legs look like I went to a fencing contest in Lilliput and lost. Thank you for all the prayers and support!! I am so blessed!
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Quagmire and a Zombie

11:58 PM





I was notified via a little handwritten note attached to a form I requested from my former school district (Dante's Inferno level 14) that my COBRA health coverage runs out as of March 31. Nothing like a little warning here. The really annoying part is that without health insurance, especially prescription insurance, I pretty much become a contest to see which major body system fails first. For a while there I felt overwhelmed, as my options are pretty limited and the time is short. This would not be an issue if Social Security had not been such bastards and had just approved my claim and not forced an appeal because then I would have Medicare. Two options have already been eliminated. I can convert my COBRA insurance plan to an individual health care plan, but insurance is apparently for the healthy. Once I met the $2500 deductible, I would pay up to $100 per prescription until the insurance company had paind $2500 and then it would be all on me. Two of my prescriptions added together would take out the $2500. It allows a gracious 2 physicial visits per year. Something tells me Botox and wheelchairs and leg braces are not covered. I then checked to see if I could be added on to my father's insurance plan as a disabled dependent, but he is now on Medicare and so that is a no go. I am down to throwing myself at the mercy of the state and praying that there is an answer. I have faith that God will provide an answer, as He has never failed me before and He is not going to change His ways now. Even though it feels like I am in the middle of a quagmire, barely able to lift a foot without losing my boot to the muck, I know He is creating a way. Prayers are always appreciated.



Zombies are real, and I had the bizarre chance to meet one this week while having my blood drawn. Apparently they are drawn to Vampires. I was having my blood drawn, half listening to the conversation in the curtained area next to me because they were talking as if they were on a Broadway stage without microphones. Suddenly I hear the man make a proclamation that startled me.
"And I have rigor mortis!"
Now being the daughter of a large city homicide detective, I am relatively familiar with rigor mortis. Being a word nerd, I am relatively familiar with the root word of mortis. If he has rigor mortis then he definitely wins the prize for having the worst day ever. Considering he was breathing and talking, and I later saw him shuffling down the hallway, I can say with some certainty that he is not fully dead. This leaves one of two choices. He is out of his mind insane or a zombie. He never called out for brains, but given the cumulative IQ of the staff it would have been a meager snack for him and my brain is so scrambled it probably would cause an ulcer. I am guessing the guy is a little stiff in new situations and sticks out a bit at parties. I wonder if I get a diagnosis of rigor mortis of Social Security would approve me then? :)
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Randomimity in Winter

10:48 PM





I am totally stuck with "nothing worth writing about" block, but I want to put something up here. Thus you will be subject to the random sparks of my mind as it tries to kindle a fire to keep itself warm because it is once again below zero outside. Now I get that I live way above that Mason-Dixon line, but does Mother Nature need to keep rubbing my face in it and giving me a white wash? If we could get the windchill into a positive two digit number I would be her new bestest friend. I lost one of my wheelchair gloves in the vast black hole that is Walmart, which means I now have one pair so when my hands get soaking freezing cold and wet from the slush that no one gives a darn about doing anything with anymore I have no other gloves to change in to. I suppose I should shake the money tree extra hard and buy replacement gloves, but dang it - who would find and keep a single fingerless glove? And its not like it was brand new, it had been put through its paces for a while and was nicely broken in.
I finished the experimental dosage of massive antibiotics to see if we could eliminate an infectious cause for my daily fevers and so far, so good. I did manage to acquire a sinus infection while on a broad spectrum antibiotic, which amazes me but shouldn't as my immune system really does suck like that. And this time of year is like playing craps every time I go out because I am allergic to the flu shot and I rely on public transportation - oh what a bad combination that is, being unable to get the vaccine and then immersing myself in a mobile petri dish of horrors.
Speaking of the joys of the mobile petri dish, I had a woman who was using a motorized scooter sitting next to me on the bus and she felt some strange compulsion to tell me her life story. She also kept patting my arm. Then she looked at me expectantly like I was going to reveal the deep dark secret of how I became disabled and how hard life is for me. I just looked at her, smirked, told her "Yeah, I caught a bad case of dystonia" and pulled out my cell phone to play WordTwist. She visibly sagged in disappointment over the fact that I was not giving her at least an equally juicy story full of horrors and "poor me"s. Sorry lady, I had just done battle through Walmart, sans gloves, and I was in no mood to have a Hallmark moment, or a Mallox moment.
I think maybe this weekend I will finally take down the small Christmas tree that is still sitting on the craft table in my bedroom and put it away. After being hesitant to do much for the holidays this year, I am now too lazy to take all of the ornaments off of the little sucker and pack it up. It is oh so tempting to just cut out some hearts, stick them on, and make it a Valentine's Day tree, then repeat with Shamrocks for St. Patrick's Day, Eggs and flowers for Easter, etc. But eventually I do want my craft table back. It is also very tempting to just shove the entire thing in a box, ornaments and all, but I know that next December I would be very angry with myself for that little stunt. Sad thing is, I am not really ashamed of still having the Christmas tree up, as much as almost proud in a twisted sort of manner. :)
I will hopefully be back soon with more insightful, thoughtful or at least funny insights. Like the fact that the punk who decided he was done with his slice of pizza at Walmart and chucked it over the shelves from his aisle into mine where it landed dangerously close to me is lucky he can run faster than I can wheel or I would still be picking his DNA out of my tires. Or the fact that the people most likely to help you when you are in a wheelchair and can't reach something or drop something or get stuck in, say, 14 inches of snow are women of childbearing age. It brings out the mothering instinct. Men rarely help unless they have a woman with them that they want to appear especially chivalrous for, or I flat out ask them and they get a neat deer in the headlights look. Sometimes I like cornering a guy just to see that look when I ask for help. Its like I am asking for help getting dressed instead of reaching the milk.
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I Want One!

7:30 PM


I have wheelchair envy. I want a Tank-Chair wheelchair as shown above. This thing is awesome! It can handle snow, like the 14 inches we received this past week on top of the foot or so already on the ground, and its snowing again today! It can handle sand and water so beaches are accessible!Wet, slippery pavement is no problem!  And no one is going to be stupid enough to get in your way when you are driving down the aisle of the local store in one of these!! If I ran over toes in this thing, I would most certainly get the person's attention!! And leave tread marks behind!
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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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Job 8:21

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



Blog Info

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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.
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