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

The Battlefield

9:57 AM
**I realize that my family and many of my friends already know about this part of my history, but not everyone reading here does and it is such a defining part of who I am that I feel it is important to share again.**

My family has a relatively strong military history, and one of the keystone lessons I inherited from this legacy is the fact that you never walk away from a battlefield until every brother an sister is also off of the field. If you are blessed enough to walk off of the field unharmed, you go back for those still fighting and for those who have been wounded. Leaving fighting and fallen brothers and sisters behind is incomprehensible. I believe that this deeply rooted belief is part of the reason that from such a young age I knew that I had to be a special education teacher and there was no other occupation on earth that would be right for me. Of course, this was on a subconscious level and I also delighted in working with children with special needs and the requirement to constantly think creatively and the opportunity to celebrate every tiny step. But I also saw, and still see, in each child what I could have and, according to medical science, should have been. I see my brothers and sisters who are still on the battlefield fighting for equality, for respect, for access, for appreciation of their incredible Abilities, for people to believe in them, for a world without labels, for a chance to just be children. I can not walk away from my fellow soldiers, I can not abandon those who are fighting the same fight and those who are being lost to an ignorant society.
I was born in August of 1981, and other than a bit of drama when my police officer father suddenly remembered his revolver in the delivery room and decided to pull it out to ask the doctor what to do with it (I never claimed he is calm under pressure) all went well. From all appearances I was a healthy, vocal, and very bald baby girl. When I was five months old my mother had rocked me to seep in the downstairs living room while watching a movie on TV. My nursery was upstairs, but she dd not want to miss the end of the movie so she laid me down on a blanket on the floor. As she watched the movie, at her feet I quietly and without struggle ceased to breathe. With movie credits rolling, she bent over to pick me up and discovered a blue-gray baby with no respirations and no detectable pulse. Thankfully we lived in a very small town and within a short period of time following what could only be a horrifying 911 call volunteer rescue workers were holding my life in their hands. Over the next 6 months these volunteers would come to know me very well, and whenever a call for my apnea came in they knew exactly who it was and what was necessary. One even very calmly and rationally told my mother that she could either leave the front door unlocked or he would remove it from its hinges should it ever be locked when he arrived on a call because "his baby girl" was on the other side of that door. He did not have the nickname "Moose" by accident.
After that first severe apnea event I underwent extensive testing, seeking any cause for me to suddenly stop breathing without warning. Finally the only diagnosis the doctors could offer was severe apnea, "Near Miss SIDS" (Near Miss SIDS because had my mom not found me in time I would have died and it would have been attributed to SIDS). I was discharged with the early 1980s apnea monitor which compared to modern technology is as high tech as pong compared to wii. I seemed to average 3 alarms thst required emergency support a week, and my poor brother learned to sleep through the chaos. However, the apnea machine was not portable in that it could not be used during travel. Someone had to use superhuman powers to watch and make sure that I did not fall asleep and stop breathing. The problem is we are all human.
My parents had been brave and taken my brother and I over to the house of their friends. With a fragile infant they rarely got to go out anywhere together, and forget a babysitter! They ended up accidentally staying out later than anticipated and I was sleepy. My amazing, incredible brother did all he could at the wise old age of 6 to keep me awake but he was exhausted too and was soon overcome with sleep. Every fer minutes my mom turned around in the death trap of a Jeep that my father insisted on owning (removable doors? all the better! Canvas roof? perfect!). somehow in one of those gaps I fell asleep and ceased breathing. By the time she noticed, I was a limp, purple-gray rag doll without a pulse. In 1982 there were no cell phones, so calling for help was impossible. She tried to do CPR in the front seat of the Jeep while my father set new land speed records driving to the nearest hospital. My brother slept, so used to chaos. When they came to a screeching halt in front of the ER my mom ran inside screaming "my baby's not breathing" and then literally threw myy lifeless body over the counter to a doctor who was standing there trying to figure out what the screaming was all about. He gets bonus points for a decent catch.
The doctors spent hours trying to stabilize me, and they were able to attain respirations and a pulse but I was still very precarious. Even though I was now alive again, the greatest fear was damage sustained by my brain. When the ambulance arrived to transport me to the Children's Hospital, the emergency room doctor came along with me in the ambulance because he believed that I would crash again before I reached Children's and it would require more than the skills of a paramedic to have any chance of bringing me back. At Children's Hospital they achieved physical stability and assessed my brain functioning. I should add that at the time this was the very best Children's medical facility in the state, and among the top in the region.
The doctors called my parents into one of those little meeting rooms that just constantly weep grief from other "talks". In no uncertain terms the doctors informed my parents that based upon every test available I had suffered massive, irreversible brain damage. This damage was so severe that it was going to be terminal before my first birthday and that during my remaining time I would just continue to suffer longer and longer apnea episodes. Even if I somehow made it to my first birthday I would be so profoundly brain damaged that I would never attain any skills beyond those I had attained before this apnea episode. They then suggested that my parents sign my care over to the hospital for the remainder of my life because it would be such a tremendous burden, and that they allow the hospital to be responsible for my treatment for the remainder of my life. To reassure my parents, they were encouraged to have another child because they were still young. My mother firmly informed the doctors that I was not a car that you return to the dealership when it is damaged and then you just go get another one to replace it. I was her child and she did not give a flip about how "damaged" I was or how hard it would be to take care of me. I was coming home with them and until the time of my discharge they had better do everything to keep me alive.
I continued to have severe apnea episodes until right around my first birthday when it seems my brain finally was able to make the necessary connections to regulate breathing during sleep. After discharge from children's I continued to meet every developmental milestone right on time, except for some delays in motor skills. When I was talking in complete sentences before I turned 2 and began reading at 2 1/2 my parents were reassured that brain damage was not really anything to worry about. I entered Kindergarten reading chapter books, doing 2-3 grade mathematics, writing multiple page stories on a typewriter, writing poetry, and concerned about issues like poverty and discrimination. My motor skills were delayed growing up, but nothing that limited my access to play with my peers. When the public schools tested my IQ to determine what form of gifted services I would require, I definitely did not demonstrate brain damage as I tested very well.
According to all of the testing and some of the best doctors available I was given a diagnosis of profound and terminal brain damage. There is no medical explanation for why I survived with so few signs of these prolonged periods without oxygen to my brain, and why I lived when other infants did not. I was given a gift and I have a need in the depth of my soul to use it wisely and to make a difference. I can not walk away from the children who were not allowed to escape, who are still fighting, who are the most amazing, most brave, strongest, most individual and willful, wanting to claim their place in this world, that I know. You never leave your brothers and sisters behind.
Read On 3 comments

House Call

7:52 PM
I have spent too much time dealing with medical issues when I start to diagnose my household appliances with medical conditions. My garbage disposal has poor gastric motility and severe reflux, as in the process of doing dishes I had to run it 6 times just to get the standing water in the sink to drain and it returned to me the same chunks of lettuce 4 times. I offered it tums but it did not like chewing those, so I think I will need to call in a garbage disposal GI consult as I am tired of discovering refluxed chunks in the water that collects any time I run the faucet. I dealt with enough reflux presents as a teacher, I don't need appliances sending meals back at me. My ceiling fan has sinus tachycardia with occasional arrhythmias. It is apparently not firmly attached or something because it wobbles in a steady rhythm to the rotation of the blades, much like the loud monotonous ticking of a very large grandfather clock. I have actually gotten used to it and only notice when the rhythm suddenly skips or changes for a short period of time. However, since it appears like it may take flight from my ceiling in the near future and the constant ticking seems to annoy others I think I need a ceiling fan cardiologist. My bathtub lever thingy has arthritis as it is very creaky and stiff and difficult to coax into an extended position from its usual downward bent position. I have attempted massage therapy with mild success, but it loudly complains each time I try to ease it into its functional position. I will try some more massage therapy and perhaps some injections into the joint before calling in a bathtub rheumatologist. My air conditioner has mild asthma as it wheezes slightly, but that is treatable with rest and TLC. Heck, even my laptop had to spend 3 weeks inpatient for what the paperwork described (in its "computer terms for idiots section") as a damaged brain and central nervous system. Apparently my computer caught my illness from me!! :)
Read On 0 comments

Uncharted Territory

2:52 PM
I have been living in a medical world since infancy, and I can not remember a time in my life when I did not have to take daily medications or have to see at least one doctor on a regular basis. I learned to swallow pills early in life because I decided that I was tired of the disgusting tasting liquid medications, and that there had to be a better way than having to be held down with someone holding my nose and mouth closed until I swallowed (I was a stubborn kid and those medicines were nasty - there were many laps run around the house as someone tried to catch me to get to the holding and administering steps). It was much like trying to give medication to a cat, only I was highly verbal and never failed to express my displeasure about the experience. I was disgusted by the lack of appropriate supplies in my toy medical kit and supplemented it with things like alcohol pads, gauze, "IV tubing", "syringes", medical tape, "nitro", "prescription medication", a "prescription pad" and an "ultrasound machine" and X ray machine. My dolls did not have "owies", they had double pneumonia, bronchitis, kidney infections, strokes, chest pain, lupus, cancer, and unknown diseases. I played out my medical experiences with my dolls, and eventually even had access to real syringes and IV tubing for the poor abused dolls. I even completed the first successful arm reattachment on a Cabbage Patch doll when my favorite doll's arm literally came undone and off of her body. I stiched it back in place and the patient survived, with just a bit of an unevenness in the length of her arms. Not bad for an 8 year old surgeon!
So as I grew up and was handed medical diagnosis upon medical diagnosis, it was familiar territory to me. I accepted it, learned about it, took control, added to my medicine cocktail as needed, added a new doctor as needed, and kept on living my life. No one could ever tell from looking at me that inside I was a war zone of chemicals and misguided immune cells and misspelled DNA and miswired parts. I never experienced any real grief or sense of loss because I had never known any other life. It was just another lemon to toss on the theoretical pile for that lemonade someone was going to make and my life was not interrupted. I coped so well because it was life as I knew it and it never changed any critical aspect of my life or my ability to live as I wanted.
So this illness is uncharted territory for me in so many ways even though I have been doing the Medical Mambo since infancy. This illness has radically, and suddenly changed almost every aspect of my life. I can not keep it hidden and it is immediately evident to someone seeing me that there is something "different" about me. I can not yet take control over this illness, and the medications are not treatments for it but treatments for its symptoms. I can not even truly educate myself because it is a rare diagnosis of symptoms, not cause. For the first time I have had to deal with the grief, the loss, the mourning, and the anger that comes with a serious illness that disrupts your life. However, since I am used to just going on as normal I become quickly frustrated when I become angry or sad or long for how things used to be. I expect myself to just "suck it up and deal". Nothing prepares you for something like this, not even 26 years of living in a medical world. There are days when my view is very positive, and there are days when I am more melancholy. There are times when I just want this to all go away, and times I feel as if I have adjusted really well to this entire new life. There are times when I can see all of the positive things I have gained from this experience, and times when the losses seem more overwhelming than the amazing blessings. Almost a year into this it is still uncharted territory and something I thought I would have been better prepared for, but find is a strange and foreign land that I travel through. It has its own unique beauty, moments that take your breath away, and it has its own rough terrain but it is unlike anything I could have ever imagined. After all, none of those baby dolls ever came with a wheelchair!
Read On 2 comments

A Gray Day Indeed

11:27 AM
I spoke with my amazing neurologist this morning, and we did some problem solving and discussed the most recent issues that have made their presence known. A large part of me wants to just ignore all of this, to ignore that Big Green Monster, and pretend like nothing of significance has happened. Unfortunately, that would be as successful as trying to use denial to stop a flood. My briefly and hastily scribbled notes from our conversation summarize things pretty well. I need to make an appointment with a urologist to evaluate my bladder and the best way to deal with the fact that it appears it has joined the list of body parts with malfunctioning sensory nerves and spasticity. Remembering all of the testing I had done on my bladder as a child before the very general diagnosis of neurogenic bladder was made, I am pretty sure this is going to involve tubes in places God never intended for there to be tubes. See, there are entrances to the human body and exits and I am a firm believer in the fact that the exits are exits only. Next, I am to start on Cipro until I can get a culture for a possible kidney infection to my local internist for analysis and sensitivity because since I can not tell when my bladder is full it could easily back up into my kidneys and have created a significant infection. This infection could be what has caused my increase in weakness, and my back pain (even though the back pain is not in the kidney region) as an untreated infection in someone like me can cause increased muscle weakness, increased fatigue, increased symptoms. Symptoms like relying on my wheelchair more in the house where I used to use just my crutches or walker, having significant back pain, increased aching and weakness in my legs, and not being able to maintain lying on my side in bed without support. If these symptoms continue even after I start the antibiotics then I am to see my neurologist early next week. If things get worse or I have any issues I am to call her immediately. Our next step in the diagnostic process is going to involve very expensive testing for genetic disorders and such for the spastic paraparesis, as all other testing has come back normal. The testing is even more important because I can not obtain any family medical history from my father's side of the family beyond my father, his half sister, and his mother.
I am frustrated at this point, because it seems like whatever this monster is refuses to give me any chance to enjoy even a shred or normalcy before it starts to attack again. I am angry that this just goes on and on, and that it continues to be such a defining feature of my life when I have a different life I want to be living. I am scared because we can not identify this monster and we can not predict what it will do or figure out a way to fight back. I am worn down from almost a year of this without any respite or end in sight. But most of all I am choosing to remain hopeful and to have faith that God is in control, and that all that I do not know is known to him and that all that seems random chaos to me is being made into perfect glory by him.
Read On 1 comments

Wheelchair Etiquette

10:56 AM
I realize that I have been going out into the world automatically expecting people to know how to interact with someone who uses a wheelchair, and yet thinking back on my own educational experiences I recognized that these skills are never really taught to us in our society. I have the advantage of having worked with amazing children with special needs, and having been a vocal advocate for all individuals with disabilities, so even before I ended up with my butt sitting in the wheelchair I was fairly conscious of at least some of the basic issues. Being the one sitting in that seat has been quite an education for me, however, and I would like to share my wisdom. I should warn you that some of it may be shared with my usual sarcasm and dark humor, because this is me and sometimes the truth hurts, but it hurts less with a good laugh.

Ms. Emily Hell On Wheels Guide to Interacting With People on Wheels'

1. My IQ did not become cut in half the moment I sat down in my wheelchair. Please do not speak to me as if I am completely unable to follow a basic conversation. And for the sake of everything sacred and holy enough with the baby talk - that high pitched voice and overly false excited tone that even toddlers hate is just rude. In other terms, "Excuse me, but does this wheelchair make my brain look small?"

2. I'm in a wheelchair, not hearing impaired. There is no need to yell when you talk to me, unless it somehow makes you feel better to look really ridiculous.

3. I'm down here. Talk to me, not to whomever I happen to be with. It is unquestionably rude to ask the person I am with questions about me when I am sitting right there as if I can not hear you because I am a foot or two below your eye level. Remember, I am at the perfect height to ram into your legs "accidentally".

4. Think before you open your mouth. A brief list of comments I am so tired of hearing is as follows:
* Oh, did somebody forget you? (Yes, just like you forget a purse someone forgot a 28 year old in a wheelchair on the sidewalk. Ugh! I hear this one when I am waiting for the bus "without adult supervision")
*Who is here with you? (Gasp! I can go places all by myself without adult supervision - they do let us out once in a while!)
* You sure drive that well. (Why thanks, you sure manage walking with those legs well too!)
* Oh you poor thing... (Save the pity unless you are making a cash donation)
*Why do your feet point the wrong way?/Why are you so knock kneed and pigeon toed? (I don't mind questions about my disability, but tact people! I usually answer that I am studying ballet.)

5. Ask before pushing my wheelchair, even if it looks like I am having a hard time. Having someone suddenly start pushing your chair is very much like having someone suddenly pick you up and start carrying you somewhere. I don't like being pushed around.

6. Please ask questions, and ask instead of staring. Allow kids to ask questions. Education is always better than fear or ignorance or stereotypes. I promise I don't bite...much. :)

7. If you see me struggling with a door that is not wheelchair accessible, would it kill you to open the door? Karma people, Karma!

8. Remember that while I may use a wheelchair, I am still a 28 year old woman with dreams and wishes, thoughts and opinions, wisdom and insight, worth and value, and desires and hopes. I just happen to access the world by using wheels. Most of all, remember that in a heartbeat you could be me and how would you want to be treated.
Read On 1 comments

Go Away Big Green Monster!

10:11 PM
I loved using the children's book by this name to teach even my little ones how to deal with fear - it is a simple concept book where page by page a monster's face emerges until it is complete via layered cutouts, and then the reader is empowered to make it go away page by page by telling the parts to "go away" until finally only the base remains and you tell it "Go away big green monster!". I even had an awesome hand puppet that accompanied the book so my kids could build the monster themselves using tactile input and real interaction and then take it apart again.
So how come when I yell at this big green monster that is constantly lurking just behind me, he only laughs? I tell him to go away with his spasticity, with his pain, with his sensory loss, with his contractures of my feet, with his dysphagia, with his fear and intimidation but he just laughs. This Big Green Monster has the power of the word progressive, and I can't seem to use the skills of talking away my fears or rationalizing them away to make him go away. In September of 2008 the monster was nibbling at my toes and feet, by October he was also contorting my stomach with dysphagia and nausea, by December he was grabbing at my ankles with abnormal tone and my pulling at my legs with weakness. By January he claimed my feet and was steadily working his way up my legs. By May the EMG testing demonstrated abnormalities throughout the nerves of my legs. Now the monster is impacting my bladder and trunk muscles. Go AWAY Big Green Monster! GO AWAY! Can we call a truce, you stop where you are and just go away? No more loss of sensation, no more loss of movement, no more increased pain and fatigue, no more loss? No more Big Green Monster?!?
Read On 0 comments

More Questions Than Answers

10:42 AM
I have several more topics that I want to write about on here, but since I have been sans laptop or reliable internet for over three weeks I need to do a little catching up first. I made what entries I could using my cell phone, but that is limited especially since it is not a particularly fancy phone. When asked by my aunt if it was a smart phone, I replied "it is of about average intelligence".
Anyway, my team of three all star neurologists have finally achieved the holy grail. I have a medical diagnosis. Wait. We have a diagnosis but it is a diagnosis of symptoms and not cause. Drat it all, that is not the holy grail. That is a bronze medal perhaps. Well, anyway at least they have achieved something no one else has been able to achieve since I first started showing symptoms way back last September (they were very mild then, and then rapidly progressed). The official name given to this monster is Progressive Spastic Paraparesis/Paralysis. Actually, to get more official it would be Idiopathic Progressive Spastic Paraparesis/Paralysis. Idiopathic meaning cause unknown, although we are still methodically working on trying to find the cause. However, since I am missing half of my family's genetic and hereditary history we face a daunting task of trying to piece together genetic possibilities. On my father's side of the family the only information we have is about my father, his mother, and his half sister. Not a lot to go on there when working with mystery diseases. We are also looking to see if the issues that have been present since birth with my immune system are to blame. The diagnosis itself can be broken down further to make it easier to understand. Progressive: it began way back last September with my feet suddenly starting to rotate outward, as noted by the physical therapists I taught with, then progressed to include dysphagia from the dysautonomia, and major foot deformities, and sensory loss now up to my knees and oddly while I have my standard poorly developed fine motor skills the sensory loss is mirrored in my hands and arms, and I also now have sensory loss in banding along my back and trunk. Spastic: my muscles have too much tone in them, causing them to become tight and to contort into abnormal positions, leading to the deformities of my feet, the inappropriate rotations at my knees, and the inward rotation of my hips, also leading to painful spasms of the muscles. Paraparesis: weakness of the lower extremities, also is impacting my trunk muscles up to about rib level. Paralysis: loss of proper functional movement and sensation of my lower limbs. What we do know is that it is a spinal cord and nerve issue as the EMG demonstrated no deterioration or dying off of muscle cells but clearly demonstrated that my nerves could not properly conduct the signals to the muscles of my legs - instead of a steady smooth signal to move it came through in broken up little bursts. Now the questions remain - what caused this? How far exactly will a progressive disease progress? Should someone have caught this sooner and prevented the major deformities of my feet through bracing them? Does this connect to the dysautonomia I was born with, and if so how? If not, how was I so lucky as to end up with both of them? Can I hope for improvement or should I just hope now that things remain stable? How do you explain a rare disorder to someone when not much is known about it and the cause remains a mystery?
Read On 0 comments

Thunder, Lightning, and Rainbows

2:45 PM
There are days when you feel like a little gray cloud is hovering over your head tossing raindrops at you, and then there are days when you feel like there is a giant storm cloud hanging over your head tossing lightning bolts at you. A week ago Thursday was one of those thunder and lightning days. First of all, I had to wake up at what is an unholy early hour of the morning in order to be at the doctors office by 9:00am for a spinal tap. Did I mention that this was a spinal tap being conducted with absolutely no anesthesia? Due to some beloved combination of genetics from being a true redhead (research supports the fact that redheads require more anesthesia) and my funky body, I do not respond to novacaine or lidocaine. I also do not respond to conscious sedation besides becoming slightly testy at the fact that I am told I have received enough medication to sedate an NFL team and yet am fully conscious and not sedate. So I was looking forward to that procedure about as much as one looks forward to walking barefoot in hot lava. I had been spending a few days at my Dad's house, and so I had not only my wheelchair but also my new forearm crutches and a duffel bag with clothes and medication to drag along. At O'still dark my stepmother loaded all of my accessories and luggage into the back of her pickup truck and I straggled into the passenger seat. However, her morning was going as well as mine and she forgot one tiny little detail. She forgot to close the tailgate. At the first turn in the road my duffel bag made its leap for freedom, with us completely unaware. Miles down the road, at the next turn, my wheelchair rolled out and into the middle of the road. Still oblivious. Two miles later it occurs to my stepmom that she does not remember closing the tailgate. Let the lightning bolts strike. She panics and blames herself, and I somehow remain freakishly calm. I guess compared to having my belly button pierced from the inside out, this all seemed relatively minor. We backtracked and discovered my vagabond wheelchair as someone was removing it from its desperate attempt to roll on down the road. I must commend the manufacturer because that chair took a bounce and was none the worse for it. We even found the brake extenders. For a cheap rental chair that thing sure has taken a beating! As we backtracked we could not locate my duffel bag anywhere. My poor stepmom was hysterical and I once again was very oddly all zen about it and not concerned because it was just stuff and stuff could be replaced. At no point did I become upset or concerned, which I believe is a total testimony to God because I have a strong German Irish temper and when stressed it tends to have a very short fuse. We could not locate my bag anywhere, so we set off for the doctor's office with my bag MIA.
The spinal tap was just as delightful as I had anticipated, but the doctor was skillful and truly did his best to try and make it less painful. However, I must say that I heard thunder when he told me I had to roll over onto my side WITH THE NEEDLE IN MY SPINE. When I mentioned that I was not so sure about this idea, he promised not to touch the needle - while this assured me I would not experience the shooting pain that came every time he touched the needle, it did not assure me that the needle would not move as it hung out in my spine as I turned over! The brand new resident whose other jobs were limited to cleaning my back with betadine, helping move my legs, and standing in the corner asked if there was anything he could do to help me. "Yes, you could remove this needle that seems to be stuck in my back" I replied. He was not sure how to respond, so he answered "I am not sure that would help you". "From this perspective it sure seems like a good idea!" He needs to work on a sense of dark humor. Once I was on my side, the radiologist doing the spinal tap announced that, joy of all joys, he needed to put the needle in further. I'm sorry, are we doing a spinal tap or piercing my belly button? After shouting "ouch", he promised the needle was in and that he would not touch it again until he removed it. Unfortunately, they apparently needed enough fluid to fill a child's swimming pool as it took 15 minutes to collect all of the vials. God bless the nurse, she told me they had ordered a large number of vials because of the many tests they wanted done but that she was going to collect a little extra and request that all unused fluid be stored and saved so that if the doctors decide they want to run more tests they will have spinal fluid without torturing me, um having me undergo another spinal tap. Oh, and to get the fluid to drain out I was elevated on this table that looked like a modern day electronic version of the ancient tilting rack. Their assurances that I would not fall off because there was a block at my feet would have been more reassuring if I were able to feel said block at my feet!! Ugh!!
So after spending 4 hours hanging out in the recovery room flat on my back, with a bandaid on my back and a bandaid on my butt from the shot of zofran I needed to tame the tantrum my dysautonomia threw at the invasion of the spinal needle, I was allowed to lie in the back of the truck to go home and lie flat for the remainder of the day. My bag was still missing, even after my dad had walked along the road near where we found my wheelchair and could find no signs of it. I was fine with it, and just thankful that my iPod and phone were in my backpack along with most of my critical medications. Again, so God and so not me. When I got home and was changing into pajamas to serve out my flat on my back sentence, my cell phone rang. It was Target pharmacy calling to tell me that someone had found my duffel bag and because I had a bottle of medicine with my name and their pharmacy number on it they used that as a way to locate me. They took my bag to the local police department where my father picked it up with all contents intact. Every pill, every syringe of lovenox, every item of clothing, every everything was there. It turns out a nurse on her way to work saw my bag right after it fell and stopped to pick it up before anyone else could steal it. She had to take her child to daycare and then go to work, but when she went through the bag looking for identification she saw my medication and knew I would need it as soon as possible. She never left her name, and I have no idea who she is other than the rainbow at the end of a day full of thunder and lightning. And reassurance that there are still amazingly good people in this world who do kind things without seeking reward or accolades, but just because it is the right thing or a good thing to do.
Read On 1 comments

Victoria's Not So Secret

8:43 PM
I am somewhat modest in my choice of clothing, believing that I can have my own sense of style without needing to have even the imagination showing. In the past I have been incredibly shy and self conscious, but for some reason I have found a new confidence and assurance in who I am since discovering my life on wheels. Not only does this make dealing with the frequent stupid comment easier, but it makes life in general more enjoyable. As a result of the many body changes from my illness, I have needed to purchase multiple wardrobes including undergarments. I made the mistake of purchasing a "7 styles in 1" bra from Victoria's Secret because at the time it was comfortable and seemed highly functional. What I failed to take into consideration was the fact that in order to serve 7 styles, the straps were removable, and that being in a wheelchair my arms, shoulders, and upper body move a lot more than usual. In fact, I can state with documentation that they move enough to cause both bra straps to come unhooked from one of their two fastening locations, causing a bright pink bra strap to dangle out of each of my shirt sleeves for all of the world to see while wheeling in a store. There is no dignified way of dealing with this situation. There is no dignity in this situation. I surrendered and just went for the reach up my sleeve and shove the dangling strap down my back route. There were a few guys who found this process highly entertaining, and I was tempted to collect money for the free show but by that time I was blushing as pink as that blasted bra. Normally I would have ended up humiliated for life and most likely in tears of embarrassment. Now I just ended up laughing hysterically at the entire situation and how I managed to break free of both straps within the same short time period. Apparently Victoria's Secret is not always such a secret...sometimes it is a bright pink flag flapping in the wind out from underneath your T shirt sleeves.
Read On 2 comments

Its Alive!!

12:16 PM
Three weeks, three long and painful weeks later my laptop has been restored to working condition. The great joy is that nothing that I had saved on the computer has been lost!! The great irony is that Best Buy's Geek Squad puts the computer repairs into "simple terms" and as such, my computer suffered a failure of its brain and spinal cord which caused it to be unable to function properly. So now my computer is imitating my physical illness? Is this a human to machine viral infection? :) Now that I have my computer back there are several journal entries that I have wanted to write that were too difficult to try to type out on my cell phone's keyboard where I am literally all thumbs. Those should be arriving soon, but first I am going to quickly back up all of the important files I was so blessed not to lose this time when my computer decided to imitate my miswired brain!
Read On 1 comments

Price Check

12:43 PM
I am very skilled in the arena of guilt, and hold myself to greater expectations than I do others. As a life long perfectionist it has been a learning curve coping with all that has happened, and both God and I have laughed at my tantrums along the way. I have found great freedom and a sense of being whole and complete again through art - something I was afraid to really try before because I was not perfect or good enough. So today I used birthday money and a small amount of my own to completely stock my supply of quality watercolor supplies. Part of me wants to feel guilty for wasting good money on a want rather than a need, but how do you put a price on feeling whole again and finding peace and an escape on the painful days and strength on the weak days? Do I have my priorities all wrong, or just right? And I know God is chuckling as I ponder this, knowing He has already given me the answer if only I would listen.
Read On 1 comments

Causing Trouble

11:03 AM
I am out running errands and already at my first stop I am causing trouble. At the bank I use, it is a physical impossibility for a person in a wheelchair to access the building independently. The doors are too heavy and positioned in such a way that they are virtually impossible to open. I spoke with a manager who said when they remodeled 3 years ago it was up to code and I could use online banking. To deposit a check? Her response was to use the drive thru. Since I come by bus I said I could wheel through but under ADA I have the right to access the building and I can not be their only customer in a wheelchair. Supposedly this will be passed along to "higher ups". I may call higher ups as I don't like being told I can roll through the drive through! Is equality too much to ask for here? I dont think God laughed at her ironic suggetion!
Read On 0 comments

Cellulitis from bug bite last summer in Pittsburgh one very hostile insect

7:52 AM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

7lb French Kissing Bandit

7:49 AM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

HOT!

7:46 AM
So I have pretty much lost pain and temperature sensation below my knees. The primary exception is the contracted toe joints which greatly magnify any bump. I dropped my crutch on my foot and screamed, not because of the huge red swelling bump on top of my foot but because it nudged my big toe joint. So yesterday I totally forgot to check the bathwater before stepping into it. Apparently I had turned it way too far towards that H. What amazes me is I never felt pain or burning when I stepped in but somehow my brain got the message that I needed to step out and check with my hand. All of this processing took less than 5 seconds too! When I tested it with my hand it was dangerously, painfully hot. I have no idea how the danger message got through when I sensed no pain or heat, but I am so thankful it worked! I thought I had completely lost functional assistance from my feet and legs, but God laughed and I joined him in laughter of joy and delight!
Read On 0 comments

Mama Said There'd Be Days Like This

2:36 PM
Yesterday in the mail I received back forms I had needed my neurologist to fill out for me. While I know we now have a working diagnosis of progressive spastic paraparesis and paralysis, the weight of that has yet to sink in. I took a good blow yesterday when on the forms I read the doctor's assessment that I am fully disabled and will not be able to return to work in any occupation at any point. Ouch! I was no longer putting huge odds on being primarily ambulatory, but that stung. Just how progressive is this? Can we halt things where they are now or will the sensory loss and muscle weakness continue to progress? Why do I feel like I am a prisoner inside of my body? I hate hard hitting gut check reality slap to the face days. But you take it, and live each moment you are given in faith and hope and gratitude. And as I refuse to surrender I know God is watching as a proud daddy, smiling and laughing in delight.
Read On 0 comments

My birthday cake

5:14 PM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

Short Birthday Note

10:18 AM
I will try today or tomorrow to access the internet via my mother's dinosaur with an attitude as there are several entries I want to write that are too long to type out on a cell phone. My thumbs are good but not that good. Yet I wanted to post my amazement and gratitude at celebrating my 28th birthday today. First, I survived being 27 which was one rough year. Second, I am eternally in gratitude and praise that when the best doctors in the state pronounced me profoundly and terminally brain damaged at 6 months of age with a 3-5 month life expectancy God just laughed. He laughed even harder when I started reading at 2 1/2 and harder when my IQ testing came back. For his plans are not our plans, and I am so thankful. I live each day in gratitude and with a sense of responsibility to not waste the gift I was given. But today is all about celebrating life, celebrating blessings beyond imagination, and celebrating a God who laughs!
Read On 1 comments

A good stab in the back

8:52 AM
The spinal tap yesterday went as well as possible considering they placed a four inch long needle into my spine. I did not say any inappropriate words, although I fully admit to a few good shrieks of ouch. I was blessed and avoided a spinal headache, although the dysautonomia had a small tantrum after the procedure. Now my back just hurts like I was simultaneously kicked by a very angry mule and stung by a few bees with a grudge. I am moving like I am 90 and grouchy, but the test is over and I love the nurse who thought to take and preserve a little extra fluid in case they decide the vast number of tests being run are not enough, so hopefully I will not need to do this ever again! When I have access to a computer I have a great story about God laughing, a run away wheelchair, and a mystery woman saving the day. Till then all I can say is my life is always an adventure!
Read On 0 comments

Met Prince Charming, Now seeking

7:19 AM
Met Prince Charming, Now seeking a few good frogs.
Read On 1 comments

A Battle of wills and plastic

10:42 AM
I finally have a prescription for bilateral custom ankle foot orthotics to properly hold my feet and ankle in a more natural position. Since they have been contorted since December, bones and ligaments have literally rearranged themselves in an odd version of Chinese foot binding. So today we begin a battle of wills - mine vs. this disease, with the assistance of custom made plastic braces to hold my feet close to flat, my toes close to straight, and my ankle in neutral. This will hurt as I adjust to them once they are made, but I am more stubborn than this darn disease! So now I need to decide on a color, because white is so not my attitude! And I know they can be made in color! Might as well give people something cool to stare at since they stare anyway! ;)
Read On 0 comments

I hate mysteries

10:11 AM
This will be short as my laptop is still being fixed and so I am writing via email on my cell phone. Yesterday at my neurology appointment I received a partial diagnosis: we know the what but not the why. I have progressive spastic paraparesis and paralysis. The cause remains a mystery, and so methodically testing continues with the awareness we may never solve the mystery. I hate mysteries. I need to know not just what and how but why. So tomorrow morning I am having a spinal tap sans anesthesia to try to rule out anything attacking my spinal cord. Then I get to spend a required 24 hours flat due to my blood thinners and medical history. Without a laptop, which has a mystery ailment of its own. Where is House when I need him? :)
Read On 1 comments

Baked apple stuffed with raisins and cranberries in a cider sauce

11:00 AM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

Never dare a Redheaded German Man That He Would Never Do Something

4:48 PM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

He french kissed me and his breath smelled like his rear end - not my type!

4:46 PM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

Thursdays Fresh Vegetables in sauce over rice

4:44 PM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 0 comments

French Kissing Poodle

12:33 PM

This message has been sent using the picture and Video service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

Read On 0 comments

Pan seared turkey breast in fresh cinnamon orange sauce w/ steamed squash side

5:11 PM

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Read On 1 comments

Before and After

1:26 PM
It is interesting how one event, large or small, can divide a lifetime into “before” and “after”. In my case, there was my life “before” this specific unidentified illness turned everything upside down, inside out and backwards and my life now, “after”. Of course there is a good amount of overlap between the two, as I am the same person, but it is the things that are different that are most intriguing sometimes. These differences can be annoying or frustrating, as in the limitations on previously beloved hiking, but they can also be wonderful discoveries. "Before" I very hesitantly and only at the strong encouraging of my friend experimented with art in the form of attending a few stamping parties and making some collage type ATCs (which I never ever showed to anyone else). "After" I have discovered that while I am never going to be a professional, or even a great artist, I can escape to a place where I forget about "before" and can experiment in so many different ways with my perspective of the world through visual arts. I am no longer fearful of failure, of being less than perfect, of making mistakes or not doing things right. I am certain I break more rules of the art world than I can count, but I don't really care. For me it is one of the few things that belongs completely to the "after", one of the few times I can absolutely forget "before", something wonderful and new and unexpected that has emerged. And oddly enough, with those fears gone, I am far better than I ever was before (still not good or great) but I delight in it and that is all that matters to me. Where I expected only loss I found great gain. At my expectation, once again, God laughs.
Read On 0 comments

Job 8:21

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



Blog Info

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

Wild Olive

Wild Olive

BlogHer

BlogHer.com Logo

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.

Blog Archive

There was an error in this gadget

Labels