I have been very upset by the tragedy in Connecticut, especially as a teacher who drilled with little kids repeatedly for this situation never imagining it could be real. Had this happened when and where I was teaching, I do not know how I would have kept all of my children safe. I know there is nothing I can do to help those who are grieving, but I can do something positive to help overcome the evil.
So when I was at Target to pick up yet more medication, I purchased a package of 5 gift cards and put $5 on each one. I then instructed the pharmacist to give one to each of the next 5 customers. She kept asking me if I was sure and I tried to explain my reasons. So five people who are also in a position of needing to spend money on medication each received a little gift. I wish it could have been more, but an unexpected gift is always welcome.
I did not change the world, I did not undo what has been done, but I did look at the darkness and reclaim some of the light.

It has been a really long time since I wrote anything here. My first reason is that I have become very involved in Compassion International. I have a website where I share information about Compassion and the children that I sponsor that is located here. It is still very much a work in progress and there is much more I want to write and link to and share. The second reason I have not written anything here is that without health insurance my medical situation was forced into a holding pattern. I actually have had to discontinue a few critical medications, including an antiseizure medication also used to control my migraines, due to cost prohibitions. I can not afford prescriptions that cost $400-$500 let alone the ones that cost thousands. God has provided with my two most critical expensive medications and somehow each time I reach for it there it is. It is like the fishes and loaves multiplying. I am very nervous today, even though I should be at peace and trusting the Lord, because tomorrow is my social security hearing to determine whether or not I qualify as disabled. I am frustrated that it has come to a hearing and scared the judge is not going to see the severity of my illnesses. If I could work, do any job, I would rather do that than be as I am now. I feel so useless. If they do find that I qualify as disabled this will allow me access to medicare and increase my odds of getting medicaid. Any and all prayers will be appreciated. Hopefully tomorrow I will update with good news!!

UPDATE: The social security judge was unable to make a determination today regarding my case. She is really torn over what to do and at one point had her head in her hands on the table. The problem seems to be that my medical records lack "objective data" to support my claims. My MRIs and Lab work and DNA testing are not abnormal (or abnormal enough) to warrant a case. However, several doctors who all got the idea from my first hospital admission have used the term somatization, or the physical manifestation of emotional issues. I know this is not the case and do not want this label. She feels it is a well fitting label because there need be no objective data. I may have to go for a psych consult to prove that this is not in my head. I don;t know how emotions could cause contractures, bone shifting, documented weakness, an abnormal EMG, and dangerously low blood pressure. I am frustrated but trusting that somehow God has a plan for all of this. Please keep praying.

My COBRA insurance coverage ends on February 29 - as in Wednesday. I have been praying, my family has been praying, my friends have been praying, and quite possibly soon my sponsor children will be praying. I was notified today that my Hearing for Social Security is scheduled for May 21. While that beats 9-18 months, it sure is not the outcome I was praying for. I had so hoped and believed the judge would just look over the mountain of papers and make a (positive) decision. What is a hearing going to do? It is teleconferenced so the judge will not even see me in person so "the big show" will be shoulders and chest in a wheelchair. I can do a 360 for full effect if that makes him happy. I guess by May I have to shave my legs so I can wear a skirt because I don't think Federal judges are down with blue jeans. My other hope of Medicaid is still closed due to lack of funding. This is Michigan. We probably will not have funding again for a few decades. Stupid auto industry, who needs a car anyway? Actually, that is the problem. So now I am stepping out in complete blind faith that God will provide for my every single need as He promises in the Bible. It may not be how I expected (oh it most certainly is not how I expected) and it will be in His perfect time (which seems to not be synchronized to my watch) but He will provide for me. I wish I could say how, but I have no clue. I wish I could say when, but my calendar is full of empty boxes. All I know is that it will happen and I choose to have faith in the one who created me and has promised to never fail me. I wonder if wheeling over to Canada to buy my prescriptions is a part of His plan? ;)

What happened to my head?
    a) The aliens returned and placed a probe inside
    b) The barber cur it a little too close on top
    c) I am a star in a local reenactment of a great battle in which the cripple always gets shot first
     d) I am having a 72 hour AEEG to try and catch my brain hiccups to figure out if they are seizures

When asked by an annoying woman in the elevator who just stared at me and asked "Oh My God What Happened to You?" I was tempted to go with A. Instead until noon on Thursday I am wired for sound. I wonder if I can tweak these things to get a decent radio station since we live in the last thing to pass as a city before God Forsaken nowheresville. We hit the event button twice, so hopefully we caught something already. Although it would be my luck to wear this darn thing for 3 long days and have a big episode as we are taking the electrodes off. I loved the instuctions that came with the hook up - don't shower while having 28 electrodes attached to you and a battery box recording them. Um, duh! If it itches (if? if? it started itching before she was done putting the leads on!) don't scratch. Right, cause in my sleep I can control that. That is why for sleeping purposes I get to add a snug knit winter hat over top of the ensemble. Do not stick anything sharp under the bandage to scratch your head. No chewing gum because it makes a nifty pattern on the EEG.
The one direction that has me a little perplexed is the fact that I am not supposed to use my cell phone except on speaker phone or text. Apparently the phones can interphere with the wires and electricity. Now I thought cell phones and their electromagnatism were deemed safe, yet I am being told not to put them near my head because they will scramble my brain's electric signals. I may rethink how often I use my cell phone!
The ditz who hooked me up yesterday had a philosophy that tighter was better for wrapping my head. I have deep red marks under my chin from where she put the chin straps. However, like a winter hat that is a size or two too small the bandage slowly crept upward trying to pop off my head. The suggestion from their office of sticking a nylon over it did not seem like a good idea as I have no bank robberies scheduled this week, so my poor mom had the job of carefully removing what was still on my head and then rewrapping the whole thing. Her chin straps are not gagging me so right there is a huge improvement. All the leads are covered and attached, and I have my trusty hat.
Thursday morning my mom has a DR appointment at the same office building where I need to go get fasting labwork done, so I may venture out in my new look to get labs done and then go out for breakfast. Breakfast is the easiest meal to find a vegetarian option in most restaurants. For fun I could decorate my head with stickers, because at this point dignity is a mute point. Thursday afternoon is dedicated to removing the leads (I have a solution to remove the adhesive that is holding them in place) and then washing my hair 3-4 times to get out all of the sticky conductive goop. Thank God I cut off the 11 inches when I did to donate!! I will be using the cheap shampoo to wash that many times and not my fancy organic expensive shampoo.
Until then I am wired for sound and my head is nice and warm!!

It is incredible the difference in my severe, constant, unrelenting nausea since I became vegetarian and nearly vegan (I love honey butter on bagels and there is chocolate). I used to have to take an anti-nausea pill, an acid control pill, and a pill to empty the contents of my stomach rapidly anytime I ate anything. Now I take them as needed. I can go days without needing anything for nausea except for a pill at bedtime. I am actually getting protein into my system again, and vitamins that I was seriously deficient in because I was existing on so little. However, discovering that the key was to eliminate all animal proteins was not made by any doctor. The doctors kept saying that it might be food allergies, or all neurological, or the result of Gollum (the microadenoma on my pituitary gland), or medication effects, or to just wait 3 months and come back (my favorite - lets do nothing and see if anything changes!). I put the pieces together and it seems that for some reason my body can no longer tolerate or process animal proteins. I have gone vegetarian once before, for a summer, and I have been vegetarian long enough now that once again meat actually smells repulsive. I have no moral issue with you eating it, and I am not out to buy vegan faux leather costs more than the real thing shoes any time soon, but I will stick to my meatless barbque ribs. Thank God that vegetarian comes prepackaged and microwaveable because when I developed the issues with animal proteins I did not simultaneously develop the ability to cook. I look at the raw Tofu and other weirdly named vegetarian proteins like Quean (making things up here) and Waegan and laugh because I have no idea how you take that stuff in the package and make it edible. I then move over to the vegetarian chicken breasts marinading in sweet and sour sauce that you microwave for three minutes before eating and am back in my territory. I do have one question though. If we never established what part of a chicken was the nugget, what exactly is a vegetarian chicken nugget made from?

I grew up where you lined your boots up outside the classroom in elementary school and somehow never came home with the same pair. Elementary schools had sleds as playground equipment. I could playoutside for hours in the snow. The worst part of winter and playing outside was always the bundling process, especially when you had a grandparent or parent who thought that anything not covered by at least two layers would fall off. And it would never fail, the moment the last snap was done and the scarf tied you suddenly and inexplicably had to go to the bathroom even if you just went 5 minutes prior.
So I know cold and I know bundling. These skills have come in handy in what I have come to think of as Survivor Woman, Bedroom of Death. We live in an older apartment building that is heated by a boiler system, and my bedroom is as far away from the boiler as you can possibly get. The vents in the living room are closed and it is still warm while my bedroom could serve as cold storage. I half expect one morning to wake up to a few Penguins from the local zoo just hanging out. So each night the challenge is to dress in enough layers to make it through the night without waking up violently shivering and aching from the cold. Layer one usually consists of something like thermal pants, a long sleeve t shirt, and socks. Layer two is then fleece pajama bottoms and a sweatshirt. Gloves are kept next to the bedside and a hat has been known to make its way into the ensemble. By the time I am done I look like the kid brother from A Christmas Story "I Can't Put My Arms Down". I am also not ashamed of busting out the footie pajamas and even wearing a layer under those.
Hopefully my bundling days will soon come to an end as I finally broke down and ordered an electric blanket. I used to have an electric mattress pad which was wonderful but it was broken in one of my moves, and they are more expensive than the blankets. I just hate spending money on something I will only use for a few months out of the year. Then again, hypothermia sucks.

I am hard wired with an innately oversensitive awareness of justice and a compulsion to correct the injustices. I have been this way since I was a toddler worried about the homeless having to sleep outside on the cold winter nights and the children who had no one to love them. My special passion is for children in need, children cast aside by society, children without a chance, children in desperate poverty, children abused and sold as objects. The problem is that the problems are so big and I am so small. It is very easy to get overwhelmed and think that it is impossible to do anything. I want to change the world, to purchase a house in one of the many poverty and AIDS ravaged countries and take in as my own the children no one wants, to change laws and policies, to build schools and shelters and safe places to be a child. Yet for some reason God has decided that, at least for now, I am not going to be in a position where I have the financial resources or health to do all the life saving, life changing things I would do if only I had access to money. Instead I am at a place where I can change the world in smaller, more personal ways. I can change the world for three little girls. I can occasionally support orphans with special needs at Sarah's Covenant House. I can give a little to Reeces Rainbow so that a child can be rescued from a life in an institution. I can do little things with great passion.I can change who I am to be a more open, responsible, dedicated, unafraid to advocate person and that too can change the world. Simple love can change the world.

I could never write a speech as eloquent, as rich in truth, as powerful as those written by Dr Martin Luther King Jr. He led the way to changing our society and he did it without violence or hatred.
In honor of the day set aside to honor him I wanted to write my dreams for our country and our world, the call to action I would set forth for society were I in such a position to be heard.

I dream of the day when no child dies of the effects of poverty. A day when every child will have enough to eat, clean water to drink, and homes that shelter during the storms.

I dream of a country where health care is a right and not a privilege. Where we recognize that as part of our constitutional rights of life, liberty, and the pursuit of happiness we have a right to access medical treatments that will extend our lives, give us liberty, and allow us the opportunity to pursue happiness.

I dream of the day when discrimination based upon disability is vanquished. The day when society will not observe an individual with a disability and automatically come to conclusions about their quality of life, their abilities, and their value. A day when we will be seen for the people that we are and not the disabilities that we happen to have.

I dream of a day when all children from all socioeconomic levels will have equal access to quality education. When children of every race, every nationality, every religion, every ability will sit together in our classrooms and be engaged and challenged by teachers who are supported and properly trained.

I dream of a day when children can just be children. When they will be safe from becoming child soldiers, when they will be protected from the gangs that attempt to recruit them, when they will have the mentors and parental guidance they desperately need. A day when all children can play together without fear.

I dream of a day when all religions learn to respect one another, to honor each other instead of committing horrible atrocities in the name of their God. The day when the unifying message of God is Love is given life and breath.

I dream of a better tomorrow, of a world where everyone has enough, of the end of racism and sexism and ableism, of the innocence of childhood, of peace, of coming together instead of tearing apart. I have a dream.

My "words" that I want to live out with passion this year are faith and hope. Faith includes believing that the Lord will provide in all circumstances exactly what is needed without fail. Hope is the joy that comes from faith, the belief in something more, the intangible that you hold on to when all seems lost. Faith and Hope are meant to be shared, and so I would like to introduce to you two very special little girls that are now my very special little girls.

Meet sweet Miangeda! She is six years old and lives in the mountains of Haiti. She was chosen to be ours by my mother and I as she just captured our hearts. She looks so solemn for such a little thing. I have not yet received the full sponsorship packet for her, but I do know that she loves reading and playing with dolls, and is doing above average in school. Please add this little one to your prayers!

I would like to introduce precious Monique! She is nine, going to be ten in August (her birthday is only 5 days after mine!) and lives on the flatlands of Burkina Faso, one of the poorest countries in Africa. I fell in love with her and can not wait until the day I receive a picture of this sweetheart smiling! I do not have her full sponsorship packet either but I do know that she has few if any toys and instead enjoys playing with boxes. Boxes, it just breaks my heart. She too is doing above average in school despite all obstacles. Please add her to your prayers!!



This is the Bethelehem Child Survival Program in Bory. Haiti. Haiti's maternal mortality rate is 630 per 100,000 while the infant mortality rate is 86 per 1,000. The Child Survival Program provides monthly health screenings for pregnant mothers, a monthly food kit of healthy nourishing food, immunizations and health screenings for infants and young children, education, parental skills training, and job skills training. Please pray for the mothers and children who receive care here.

Yes, I live on a very limited budget. Yes, I could use the money elsewhere. But elsewhere is not where I am called to use it and elsewhere is not going to make a difference in the lives of two beautiful, precious little princesses who already look so weary. Elsewhere is not going to provide immunizations to babies, elsewhere is not going to feed pregnant mothers, elsewhere is not going to educate a community of young mothers on how to meet the needs of their child - simple things like hygeine and avoiding infections to how to read a book together. Elsewhere and Some other time are always going to be there. These children are here, now and they can't wait. I believe that living with passion means giving until it causes sacrifice. I can not change the world, but for now I can change a few lives. God will provide the rest. And I get to share with these little ones the fact that they are in fact true princesses of the Lord, real princesses and instead of being forgotten they were chosen and so loved!! It all comes down to faith and hope!

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!

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.

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.

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!!

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!!

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..."

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!

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.

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. :)