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

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

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

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

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

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

The day before Thanksgiving I was lucky enough to have a double schedule of a standard neurology appointment to be followed by Botox injections from the Movement Disorder Specialist Neurologist. I arrived early for the first appointment, that with the general neurologist. I am not sure why I bothered, as she has yet to ever even manage to be on time let alone early in the year or more that I have been seeing her. So I waited, and waited, and waited. Finally, just when I was due upstairs in the Movement Disorder Specialist's office she walked into the room. Now her office knew I had an appointment with her colleague upstairs at a specific time and chose to keep me waiting downstairs and finish that appointment first. This comes into play later. Her big revelation is that I am far too complex to receive care under a general neurologist anymore, and she wants me to receive care for the dystonia from the Movement Disorder Specialist and for the Dysautonomia from another Specialist and to try to get to the Mayo Clinic if I ever get off of their waiting list for the waiting list. I waited over an hour to be told you have no idea what to do with me? Seriously? And you want my copay for this too?? She did order a bunch of labs because I have further loss of sensation and proprioception in my legs and feet which is strangely mirrored pretty closely in my arms and hands. By this point I am 40 minutes late for my appointment upstairs with the Movement Disorder Specialist for the Botox so my chart is shoved onto my lap and I am told to head directly upstairs, do not pass go, and do not dream of collecting any money.
I arrive in the office upstairs as fast as I could wheel, hand them my chart, and am asked very coldly if they were running late downstairs. Um, no, I decided to go out for drinks between appointments. Duh!! I was asked this same question no less than three times by every nurse, nurse practioner, and even the doctor. Apparently what they wanted me to do was leave downstairs, come upstairs at my appointment time, and then go back downstairs to be worked into the schedule. Great, I would have done that had anyone communicated that to me. So it was a rushed appointment, which I generally am not fond of when it involves long needles and my body. The Botox injections were less painful at the time of injection than last time, but more painful in terms of aching muscles later in the day and over the next couple days. I also got a weird headache right after the injections this time. I asked the Movement Disorder Specialist a question that the neurologist had fielded to him, and did not particularly like the answer I received. Lately I get what feels like the same increased tone in my legs in my lower to mid back. When this happens if I am standing or attempting to take steps with my walker it is very difficult if not virtually impossible for me to move my legs (I can move them a little better if lying down). He feels that this indicates that there is something going on involving my spinal cord, but since I have been imaged repeatedly, and my insurance charges a small fortune for any type of scan (Damn Green Cloak and Green Dagger) we will just watch it for now and see how it progresses. Oh fun!! And to test the progression of the sensory loss another round of EMG testing may be in my future. Santa, that was NOT on my Christmas list!!
Other than having to make an appointment for a check up with my internal medicine doctor, who is now holding my prescriptions hostage until I see him as it has been too long between appointments, I should have a decent stretch of doctor free time. Now if only my back would stop hurting, I might be able to see how much of a benefit I get from my new leg braces during peak Botox effectiveness!!

I adore words, finding in them an almost magical power that extends far beyond the representation of concept or emotion. There is a lyrical, musical, ballet dance to words and the sound and feel of the word is just as critical as the intent of the word. Discombobulated has long been one of my favorite words, ever since I first tasted its weight and tone as a small child. Nothing else quite captures the state of jumbled up, tangled, frazzled, out of my own control, not sure which way is up or down as being discombobulated. My reason for not writing anything in a long time is that I have been living in a perpetual state of discombobulation.

My dysautonomia has become significantly more active as the fall days turn colder, and I do not know if that is just a coincidence or if I am in for a long winter.I have been held hostage by my body all month thus far inside of the house, and I am getting very tired of spending my days on the couch or curled up in my bed. Tomorrow I plan on forcing my body to suck it up and deal with a short outing to Target as I am out of some of my medications and they don't deliver (I got spoiled by the old fashioned pharmacy that delivered in the smaller town I used to live in!). Emotionally I tap dance along the spectrum from anger to depression (more like mourning or grief for what I lost) to days of acceptance. I should have paid better attention during those dance lessons as a child as I keep getting the steps wrong and ending up all tangled and befuddled.

I can not believe that it is already time for me to need to get working on making my Christmas cards, and I don't even have my craft table officially set up in my bedroom. Thankfully this year's planned card is simple in design and should be an easy assembly. I had considered doing homemade Christmas gifts as well but that is so not happening this year. Maybe next year if I start in August I will have a prayer of getting done in time.

I have my next round of Botox injections scheduled for the day before Thanksgiving, and I am hopeful that this appointment is not cancelled (the first one for this round was cancelled as the doctor had to go out of town). It has been an unpleasant process to gradually regain the spasticity that was taken away by the first round of injections and I much prefer the range of motion and comfort that I had following the injections. I also see my neurologist on that day, and we have many details that need to be discussed including what symptom management will look like since it appears the search for a diagnosis has been surrendered and if this new back pain is progression of the dystonia and how I can stay hydrated to prevent the recurring bladder/kidney infections when I have absolutely no sense of thirst (thanks to the dysautonomia).

In a completely random note, it has already snowed here. Excuse me, but I don't remember placing an order for an early winter or cold weather. Thankfully the little snow that stuck melted quickly the next day. Snow sucks when you are in a wheelchair and the cold sucks when you can not regulate your body temperature. I love looking at the snow, but I hate having to go out in it when it is windchill negative freeze your breath. I still want to find the genius who thought that metal push rims would be a great idea for a wheelchair that would be used in a Northern state with frigid winters. It is like that scene in A Christmas Story when the kid gets his tongue stuck to the pole, only with my hands on the push rims. I had to buy a new, very warm winter coat as the coat from last year did not fit and matching hat, scarf, and gloves. Unfortunately, with my KAFOs, there are no winter boots that I have found that fit over them so I have to be very, very careful transferring in the winter. 

I will hopefully be back soon to write something more creative, more insightful, and more entertaining. I am writing this tonight as I try to lull my brain into a relaxed state during an annoying bout of insomnia. Therefore, I promise absolutely nothing in terms of comprehension or logic. :)

As a small child I was hypersensitive to the tags in my clothing. My mother had to painstakingly remove every last reminant of any tag from every single item of clothing before I would agree to wear it. I would hear her grumbling as she picked at seams with sewing scissors after every back to school shopping excursion. But those tags in something new were intolerable to me, I could continually feel them grating against my fragile skin and what to many would be a light touch was magnified to torture. Yet in old hand-me-down clothes that had been through the washer countless times and the tags had been softened with age I did not demand that every tag be removed because they had been softened with time. They were tolerable because they were in something broken in, something that had taken the abuse of the world and worn away the hard edges. It took time for the raw scraping to transfer to a soft and gentle touch; time and wear and use.

I realize after reading comments to my last post that it may come across that I have a huge chip on my shoulder or extremely high expectations when it comes to how others act towards me in relation to my disability. Using a wheelchair, using leg braces, not being able to walk independently - those are all brand new tags in my life. After two years they are not as intolerable as they were in the beginning but they are still no where near as soft and flexible and gentle as the other tags in my life that I have lived with for so much longer. I admit that it stings more when I feel someone react to my using a wheelchair because that tag is still grating on me. I use humor as a huge coping mechanism, and that is why I frequently just laugh at the situations that feel awkward or out of place. I also know that because these tags are not worn soft with time, I need to keep in my heart and mind the fact that most people have good intentions and just generally have limited experience with individuals with different abilities.

But I do also hold society to a high standard, because if we do not have high expectations than nothing will ever change. I will gladly educate and advocate. The inclusion of individuals with disabilities in our mainstream society has come so far, but has so very far to go. Ignorance is not an excuse, as it was not an excuse during the Civil Rights movement, but an opportunity to educate. Sometimes I need to remember that it is an opportunity to educate and ignore the rubbing of the tags. Ignorance is a tag that rubs raw, but it is one that is only softened by education and by teaching those who "don't know any better". It is showing the world what it means, and does not mean, to have a disability. It is working to create a world where having a disability is not equal to having a handicap*.

I hope this post makes sense. I tried so hard to explain what is on my heart in a manner that would be easier to understand.

* A disability is a difference of abilities as compared to a norm. A handicap is when a difference prevents the individual from being able to engage in a desired aspect of society. So it is possible to have a disability but not a handicap, and technically to have a handicap without a disabilty. In the game of wheelchair basketball, being ambulatory is a handicap because you are not used to using a wheelchair and you will struggle to keep up and not end up as roadkill.

This time of year seems to be a very melancholy, introspective one for me. Last year I thought it was because it was full of all of the first "last times" - a year since I taught my kids, a year since I got sick, a year since I was able to hike, a year since I walked independently, a year since I became dependent on a wheelchair, a year since I lost so much. Apparently those anniversaries are just as powerful the second year as the first because I started to get into a funk as October began, and it was the beginning of October when I really started getting sick two years ago. I feel the old emotions creeping back in - the frustration, the anger at my body for betraying me when I had everything I had ever wanted in life (a job teaching special education, awesome friends, and was ironically the healthiest I had ever been before this happened with hiking and teaching all day and doing yoga), the aching longing to have all of the unanswered questions answered and to give this monster a name so I can call it out into the light, the grief for what I lost. Now it sounds like I am sitting around feeling sorry for myself and that is absolutely not the case, but when I least expect it I find these old feelings creeping around again when I thought they were long gone. I guess there is a season to everything and this is my season to mourn. Soon enough it will be my season to dance and celebrate and be joyful. Even in the mourning I am thankful, for in order to feel loss I had to have had some incredible experiences and opportunities and I am forever thankful for them and for the life I have been given. Considering I was never supposed to live beyond my first birthday, every day is borrowed bonus time.
I have another entry that I want to write soon, but this is what came out when I sat down to type so I am going to go with it for tonight and save the other for another day this week. This is more real to what I am experiencing now, a real image of the fact that there are still seasons of mourning two years out and probably ten or twenty years out just as there are seasons of celebration and seasons of joy and season of dancing.

* photo courtesy of iStock Photo

I am officially moved into my new apartment that I am sharing with my mother, and the apartment is awesome. However, moving is perhaps one of the most frustrating and exhausting processes on earth. We have boxes stacked in every room in the apartment except the bathroom, and our goal is to have everything unpacked and put away and organized by Christmas. What is scary to think about is the fact that I could literally throw away every single box I have that is still packed, and other than missing my journals, I  would have every single thing I *need* and could replace anything else easily. Needless to say, as I unpack I am very carefully sorting through items and either donating or throwing away any items I have not used in the past 4-6 months. Possessions have never been a big deal for me, and I am driven in life by making memories and interacting with others, not with acquiring things. I am actually most happy when I have just the basics that I need and a few wants.
So when we moved into the apartment we apparently forgot to make some sacrificial offering to the toilet gods because on the second day the toilet made a strange sound and then proceeded to do a very realistic impersonation of Old Faithful. Water was not running over the edge, it was erupting from the toilet. Before I remembered the wall shut off valve it had flooded not just the bathroom but the entire hallway. Maintenance showed up 30 minutes after we called carrying nothing more than a plunger. Um, Dude, we're gonna need a bigger boat. An hour later, the toilet is precariously "fixed" and he has made an attempt at the flood with a wet dry vac and we go to bed with fans blowing in the hallway to dry the carpet. I am especially thankful that I choose to get carpet without padding to make it easier to maneuver my wheelchair because that makes this mess a lot less of an issue. Three days later I have prayed over the toilet and flushed it, and it is refilling when I hear a sound that I can only describe as the sound one would expect to hear if the bowels of the earth opened up and proceeded to suck down Niagra Falls as the toiled completely drained of water. Apparently somewhere along the six stories of pipe there was an obstruction, and that god awful sound was the sound of it breaking away. Either that or the toilet gods decided we had paid our dues and removed the curse. I still pray before I flush the toilet and try not to get too close to it unless necessary.
Amidst the chaos of moving I also had my follow up appointment for the Botox injections to determine how well the first round of injections had worked and plan for what the next round will target and such. It was a very short appointment, which frustrated me as I drove 90 minutes each way just to talk to the doctor for 5 minutes - no exam even. I am getting new braces made as my old ones never fit right and now totally do not fit right since I have achieved a more normal position and the ability to have my legs positioned and held in even more normal positions. This time I am getting KAFOs, or Knee Ankle Foot Orthotics, because when I stand and walk I lock all of my joints for stability. The problem with this is that I have joint hypermobility and to lock my knees I actually hyper-extend them which is causing pain and throwing me even further off balance. So the KAFOs will provide the locked knee support without allowing me to hyper extend my knees.
Right now I am temporarily set up with the internet running from the main phone line in the middle of the living room because the phone guy failed to install phone service in all of the rooms of the house when he came out, and the soonest they can come back out is Tuesday. So my internet access is still limited as it is a hassle to finagle it out here. Which is okay because I have not been feeling up to doing much more than working with my mom on a box or two a day and then resting. I don't know if I have some sort of infection or if the dysautonomia is just warning me that I have been pushing too hard for too long.
I will try to update from the box piles again soon, for all three people reading this LOL :)

It has been a while since I have posted anything. Most people hibernate in the winter, and living in the great frigid north I am not opposed to that tradition in any way. However, thanks to the failure of my body to regulate temperature, I also have to hibernate inside with the blessing of air conditioning on summer days that are too hot. This summer has been unusually hot and humid, meaning that my ability to get out and do anything has been greatly limited. Add in the total lack of access to transportation unless someone decides to take me somewhere and I am a house hermit. But not for long. So long as everything works out as it should, in just over a month I will be moving in with my mom to a two bedroom handicap accessible apartment that is in the bigger town with a fully accessible public transportation system that allows me to be independent and go wherever I want whenever I want. I will also be able to get my wheelchair into the bathroom (bonus!), and turn around in the bedroom (double bonus!!). It may seem like I am losing independence by moving back in with my mom, but I am gaining so much more independence by having access to freedom. I can go to coffee shops to read and hang out, to the store when I want to, to the YMCA to go swimming in their handicap accessible pool, and so much more. I can reach counters in the kitchen and prepare food. I can get in and out without struggling with a less than safe ramp. So prayers that this goes through without any difficulties would be greatly appreciated!!
In other news, I spent Wednesday hanging out with my favorite almost 6 year old, my niece Little Bit. I certainly will not be able to call her that for much longer as she is growing like a weed fed Miracle Gro! I am absolutely in love with her openness to the world and the fact that she is neither embarrassed nor afraid of my health changes. When she has a question, she asks it without hesitation. "Why do you wear gloves to push your wheelchair?" "Why are your legs like that when you walk?" "Does it hurt?" She climbed all over my wheelchair to explore it (again, she is fascinated with it) and even gave one of the family cats (who deserves kitty sainthood) a short ride. She helped push me up a steep ramp so I could watch her swim lessons and then ran with me as I coasted down the steep ramp afterward and laughed at how much fun it was to go so fast. She is so matter of fact and accepting and I love her view of life and the world. My Little Bit is growing up and recently lost two of her baby teeth. My brother, the tough paramedic, can not handle loose teeth and was totally freaked out by the process but Bit is very proud. She is very fair when it comes to gender, stating that the tooth fairy can be a boy or a girl, and she has no clue what he or she does with all those teeth. Apparently age 12 is when you officially become too cool for family, because my other niece and my nephew are both now too cool to spend time with family although I give my soon to be 14 yr old nephew a lot of credit. He had a friend over and very nicely introduced him to me, and then a few minutes later came out to the living room and asked if I wanted anything to eat or drink. Without any prompting from an adult! He really is a great kid/young man.
My Botox injections were postponed from Wednesday to two weeks from Wednesday due to some meeting that came up at the last minute that the doctor had to attend. I just want to get them over with (I am tired of considering just how much this might hurt) and see if I get any benefits from them. I am benefiting from the most recent changes in medication, although it needs to be adjusted somewhat again.
In stomach news, I am still stuck at pureed "stage 3" baby food level. I was so excited to find out I was able to eat a package of mini muffins without smooshing them with milk because they were so super soft, only to discover through a horrendous stomach ache and other GI issues that they were saturated with oil and I can not process that right now. I also had a horrid reaction to broccoli baby food mixed with mashed potatoes. I am getting somewhat used to the stomach pain, and have down the exact combination of meds to take when it hurts versus when I am severely nauseous versus when it both hurts and I am severely nauseous. Too bad my insurance company rations my Zofran (antinausea medicine) to 48 pills per month, even though I receive a generic. I am allergic to Phenergan, and Compazine proved useless the first go round with this so I am rather stuck. I also use Reglan up to 4 times per day. I need to see if my GI doctor has any ideas of other combos or meds we can try or add for nausea that my insurance might cover. I hate having to choose to feel sick many times because I need to save the meds for when I feel really, really sick.
Other than that, nothing much is happening. I will definitely try to update more often although I think there are maybe 2 people who even read this. Oh well, I write for myself as much as for anyone else although it would be nice to someday help someone else in my situation or a similar one out. I have been awake 4 whole hours which means it must be nap time! :)

Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down

Dysautonomia is a term I utilize frequently on this site but have never, to the extent of my memory, really explained in any depth. There is a brief synopsis on the right hand side under "who's on first" but not a lot of detail. Severe non-familial dysautonomias like I have are considered to be extremely rare and therefore not a lot of research has been undertaken in pursuing their causes or treatments. To begin at the beginning, which is usually a good place to start, the word dysautonomia means a failure or malfunction of the autonomic nervous system. The autonomic nervous system is like the cruise control of your brain - it handles all of the automatic functions that your body must do minute to minute, hour to hour without conscious thought. It is absolutely amazing to consider how much our bodies process and maintain without any conscious input from us. In dysautonomia, this auto pilot or cruise control does not work right and so all of those automatic functions are at risk of being compromised. Symptoms vary from person to person, but I will use my particular presentation to illustrate what life with dysautonima can look like.

Neurological symptoms: Ataxia (difficulty coordinating and maintaining balance in space), Lack of proprioceptive awareness (not being aware of where my body is in space), Severe migraines, Difficulty concentrating, Absent circadian sleep wake cycle, inability to feel thirst or hunger, dizziness and near fainting from low blood pressure or low blood sugar

Respiratory: Severe apnea as an infant, Easy shortness of breath upon exertion

Cardiology- Postural orthostatic tachycardia syndrome, episodes of ventricular tachycardia, extremely low blood pressure, arrhythmias

Dermatology: Inability to produce the natural oils that protect the skin

Endocrinology: Inability to regulate body temperature (get fevers for no reason, or when in a hot environment; also drop below normal body temperature for no reason but especially in a cold environment); high risk of heat stroke, absence of the ability to sweat even when extremely hot, frequent episodes of low blood sugar usually from not eating due to not feeling hunger

Urology: Neurogenic bladder, bladder spasms, frequent infections

Gastrointestinal: poor gastric motility, delayed gastric emptying, IBS like symptoms of alternating extremes, abdominal pain, bloating, frequent severe nausea, dysphagia

Others: Dysautonomic crises or what I call crashes when my BP drops radically, my heart rate and rhythm become unstable, I develop a severe migraine, severe nausea sometimes with vomiting, dizziness, personality changes; severe fatigue

Some of these symptoms overlap with the Mitochondrial Disease, so it is difficult to tease out which are strictly from dysautonomia and which are from Mito. But it does demonstrate that it is a disease that impacts your entire body and your entire life. All because somewhere in my brain the messages get scrambled and discombobulated and can not process correctly.

"He that conceals his grief finds no remedy for it." Turkish proverb
"Give sorrow words. The grief that does not speak whispers the o'er fraught heart, and bids it break" William Shakespeare
"If you suppress grief too much it can well redouble." Moliere
"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love." Hilary Stanton Zunin
"There is no grief like grief that does not speak." Henry Wadsworth Longfellow

This is going to be a heart-wide-open, raw and vulnerable entry; there will be no attempts made to dress up my emotions in their Sunday best and tie pretty ribbons around the truth nor is it dressed in rags for dramatic effect. It is real, it is pure, and it is honest.
Lately I have been dealing with a grief I have never experienced before, and a grief that is difficult to process or explain to others. I hurt deeply, ache as though my heart may fall apart, have times of feeling bitter anger, and at times am sadly resigned to the situation. I am mourning the loss of so much of my life, the things that brought me such joy and defined who I was as a person and shaped my existence, and the loss of countless dreams that are now forever out of reach. It is not just a loss of what was but a loss of what could have been, a loss of the past as well as the future. In many ways I feel like some part of me has died. I go on with my life, I have good days and days of laughter and treasured memories, but something is achingly absent like a part of me has been cauterized. I don't want that old self to die, I don't want to surrender those old dreams, I don't want to admit defeat and have to allow this to change my life forever when I was so blessedly happy before. For the past 18 months I was able to lie to myself and hold on to the illusion that there was still some chance that there would be a treatable, curable diagnosis identified and I would be able to resume the life I had been living as if it had just been put on pause for a while. Now that I have a diagnosis of Mitochondrial Disease, I have to accept that there is not only no cure but no treatment. That this is a progressive disorder which may continue to steal away parts of my life, continue to rob me of dreams, continue to deny me of aspects of life that I use to define myself. If I did not live my life full out, living in every moment, living with no regrets, living at 100% with passion I would not have so much to grieve, but then I would not have so much love in my life either. It hurts more because I live more, I push boundaries, I defy expectations and definitions, I play by my own rules and love openly - love life, love others, love God.
Yet I mourn so many losses. I mourn the loss of my independence, for I have always been fiercely and proudly independent. I miss being able to just decide to go somewhere, to go exploring or on a short day adventure and not be limited to the ability of others to transport me. I mourn the loss of my physical abilities. I will never again chase after my niece and scoop her up in my arms as she squeals in laughter. My feet will never feel the rocky ground beneath them as I hike up the side of a large hill, using my arms to pull myself upward. Kneeling on a tiled floor I will never again guide the feet of a child as they take their first tentative steps. I mourn the loss of many of the things that brought me great joy and served as ways by which I defined myself - my work as a teacher and a volunteer, my passion for photography (it is much harder to access places to photograph and the angle is different in a wheelchair), my love for nature and hiking and exploring. I mourn the dreams lost, large and small. Dreams of ever being allowed to provide foster care or adopt children (I long ago understood that I can not risk having children of my own), dreams of hiking parts of the Appalachian trail, dreams of missions trips, dreams of dancing someday at my wedding, dreams of classrooms full of children.
I recognize that I can, and am, creating new dreams and a new sense of self but for now I am still mourning what I lost. The wound where it was ripped away is still too tender and too fresh to withstand the abuses of life without pain. It takes time, it takes patience, it takes growth of those new dreams and that new hope, and it takes acceptance of the grief.

Apparently this year there is going to be very little of the season that I adore called "Spring" and a great deal of the season that my body detests called "Summer". The dysautonomia leaves me rather like a reptile in that I can not adjust my body temperature very well, so when it is hot outside I am very prone to heat exhaustion. It would help if my body could make the effort to sweat, but by the time we get to that point I am already in trouble. While I also am miserable in extreme cold, I prefer winter over the heat of summer because you can always put on layers but you can only (legally) take off so many. Another huge issue that arises to the forefront this time of year is one that is virtually impossible for someone with a functioning brain to comprehend. I do my best to explain it, but it is as if I am from some weird other planet. I do not have the capacity, ability, brain signals, awareness to feel thirsty. I can and have easily gone 24 hours without drinking anything other than the sips of water required to take my medication. (On a side note, I also do not have the capacity, ability, brain signals, awareness to feel hunger or full like normal either. ) Obviously this poses a big problem because I am rather fond of my kidneys and they already take a beating from all of the chemicals they are asked to process from my medications, not to mention we know at least one has a cyst on it. Also, with my extremely low blood pressures being dehydrated is like playing on a tightrope blindfolded without a safety net - just a bad idea. To explain what I mean by not feeling thirsty, I never get a signal that my body requires liquids no matter how desperately it may indeed need them. When I do drink it is because I am forcing myself to do so or because a beverage tastes good. If my mouth is dry I chew gum or swish a small amount of water and swallow it and then have no need to drink more. To try to understand, imagine you have just eaten the largest meal of your life and are absolutely and unquestionably full. Now someone sets down a 7 layer chocolate cake in front of you and hands you a fork, telling you that now you must eat your dessert. You have no desire to eat that cake, your brain is not telling you to eat that cake but everyone else is telling you that you need to eat that cake. This is sort of what it is like for me to drink something - I feel no need to drink, because I feel no need I often end up feeling nauseous from drinking a full glass of something because my body does not recognize the need for the liquid, and I am content without touching it yet everyone is telling me I need to do it. I can't quite imagine what thirst feels like, but I do recognize that my brain is obviously malfunctioning and I think I understand the concept from reading and studying development. So we have tried numerous things to get me to drink. First there was the theory that I just needed to do it - the Nike approach "Just Do It". That worked as well as one would expect. Then there was the theory that what I needed to do was carry a water bottle everywhere with me and take a drink from it whenever I remembered. Here's a hint, if I don't feel thirsty do you think I remembered the water bottle let alone to drink from it? I left a trail of countless water bottles in my wake each with maybe three sips taken before I totally forgot. Now I am supposed to be on a 3 hour timed schedule. Every three hours, when I go to the bathroom (my neurogenic bladder requires timed elimination) I am then supposed to get myself something to drink and drink it. Any guesses on how well this is going? Some days I do really well, and other days I am lucky if I get 16oz in over the entire day. What is really bad is that I take Topomax, which comes with a big bold warning that it is imperative to drink while taking it because it is known to cause kidney stones. Oops. Thankfully so far my kidneys show no damage from a lifetime of abuse, and they keep chugging along. But how much longer can they take this? At my follow up MDA Clinic appointment this is an issue that I know we need to seriously address and problem solve because 1) I am constantly on the edge of significant dehydration, 2) this is not helping my low blood pressure, 3) I feel better when hydrated, 4) kidney stones would be bad, and 5) my kidneys are the only ones I have and I think they have been abused enough.
I should write another time about how weird it is to have an abnormal/absent sense of hunger and abnormal/absent sense of full and the joys that brings including frequently forgetting to eat until my blood sugar plummets. I don't do much better eating on a schedule than drinking on one most days. :P With that glitch you would think I would be skinny, but nope - I have my back up belly in case the dysphagia gets severe again (that's what I am calling it, so it seems purposeful instead of just weight gain from the inability to exercise anymore).

Because we apparently missed a test to run on my brain and body, yesterday I had an EEG conducted prior to my appointment with the Dr. E to consult on the administration of Botox to my legs and feet. I drew the first lucky card of the day and became a guinea pig for someone just learning how to conduct EEGs. While she was very nice, I think I ended up with at least a dozen extra red pencil marks on my forehead and scalp as she measured and remeasured. Then she very slowly applied the leads using the theory that more adhesive and conductive goop is always better. Have I mentioned that I am allergic to all things adhesive? So we finally get approval from her supervisor and do the EEG testing. Results - my brain is using its wires according to plan. I would have been really upset had there been any signs of seizures or abnormalities considering that I am on a mega dose of Topomax (antiseizure drug) already for migraines, and another antizeizure drug that helps control muscle tone. As a result of the overzealous technician I had a delightful bulls eye on the middle of my forehead from her firmly and securely attaching a lead there. My hair was also glued down to my scalp, but luckily this was not my first go round with this test and so I had brought a hat. Washing my hair last night took about 20 minutes, a lot of scrubbing, and a lot of warm water to soak off the goop and the shreds of gauze still stuck to my head and be able to get my fingers through my hair let alone a hairbrush. It still itches today, so I think I may need to do a good scrub, round two this evening.
Then I had my consult appointment with Dr. E to determine whether I qualified to receive Botox treatment in  my legs to hopefully assist in releasing some of the excess tone. However I once again drew the lucky card and was given a Medical Student to play with first. She was a cute little thing and I wondered if her mommy knew that she was playing doctor. I tried hard not to laugh when she sat down and eagerly asked for my medical history. Instead I politely informed her that she would need more that that one sheet of paper if she wanted my entire history and that perhaps we should agree upon the cliffs notes version. After going over a condensed medical history, and explaining to her about how I am impacted by Dysautonomia, I then became exhibit A. I had to take off my shoes and braces so she could see my distorted and contorted feet. She asked me the stupid questions of the day.
"Where did you buy those? (pointing to my AFOs)"
"Those are custom made AFOs made by X Orthopedics."
"So did you get to choose the design?"
"Yep. I figure people are going to stare anyway, so I might as well give them something interesting to stare at."
Uncomfortable silence on her part....crickets chirp.....I try hard not to laugh.
"So to put your shoes back on do you have to straighten your toes?".
"Um, I have tried that and the thing is, they just don't straighten. So even with shoes on my toes are curled like this."
"So can you straighten your feet?"
"I can pull them towards neutral for brief periods of time, but this rotated position is how the muscles pull them. I can only hold them for a very brief (seconds) period of time in any other position because it is like pulling against a gigantic, powerful, and tight rubber band."
"So it is more comfortable the way they are (turned under)?"
"No, it hurts like this. My ankles hurt, my toes hurt, my legs hurt. I would prefer they not do this, but the extreme tone in my legs pulls them into this position. Does this look comfortable?"
"oh. Um, not really."
When she did the part of the neuro-exam to check for sensitivity, I did not have the heart or the patience to correct her and explain that you poke with the pointy end of the safety pin, not the rounded end. I am curious how she got into medical school and am just really hoping that she just began her neuro round. I had to play nicely with her for an hour. Then the real doctor came in and it took all of a ten minute discussion to decide that yes, I would in his opinion benefit from Botox injections. He wants to target the muscle on the back of my leg, one behind my shin bone (I am trying not to imagine what is involved in accessing that one!) and one or two others. I will receive the injections at a yet to be made appointment once they receive approval from my insurance and then order the proper dosage and quantity of Botox. Dosing is not an exact science, especially since this is an off label usage for it (which I found strange since I am more familiar with using it in this manner through teaching kids with spastic cerebral palsy and other disorders that caused excessive tone than cosmetic reasons) so the first dosage is like any other medication really - the best calculation but each person reacts differently. It takes 2-3 weeks to see results and results peak at about 2 months. I do plan on warning the doctor when he does the injections that a recent episode of Mythbusters, which proved that women can tolerate more pain than men and redheads more than any others, also showed that cursing increases pain tolerance by 30% and I may take the liberty to test that theory myself - afterall he is going to be injecting a muscle BEHIND my shinbone!!
All added together I was at the neurology clinic for 3.5 hours - 1 of which I spent as Exhibit A for the medical student. Because of my "unusual" medical history and presentation I tend to be lucky and draw med students and interns and residents frequently. But all in all it is good news - the wiring works in my brain, and we have a new tool to try and reduce the spasticity/dystonia in my legs.

I remember at one point not all that long ago having this mysterious substance called energy. I think I got a hole in my fuel tank because energy is a very rare commodity. Today my BIG, HUGE accomplishment was getting dressed and going to the store Right Next To my apartment building. It is so close I can see the back of the store from my window. I managed to roll there, with a stop to rest once I got inside the store, and get basics to stock my cupboards and fridge for the next few days. Coming home was easier because the rear driveway of the store is a HUGE slant, and the very best part of the exhausting trip. I perch at the top of what is basically a launching ramp and check carefully for traffic on the side street at the bottom. Thankfully this is small town Michigan, so traffic is rare and I can spot any vehicles easily. Then I eek my chair out over the edge of the driveway and throw my arms up in the air. At the bottom of the downward trajectory is a double bump of curb and pothole that adds some serious air time. I usually come to a stop somewhere in the middle of the road, although I have made it completely across the road before. This feat scares the dust out of the mainly elderly population that happens to witness it. So, anyway, by the time I arrived home I had used all of today's supply of energy and more than likely a good share of tomorrow's. There are many dishes in the sink waiting to be washed, and the floors need to be vacuumed and mopped (hint, that takes many days to accomplish and I may be seeking assistance with that as it eats up about a week of energy), and I am too tired to do anything about it. Not sleepy tired - although I did crash with some weird system errors earlier (I was violently shivering, freezing cold, every muscle hurt, and I was groggy) and took a nap then- but physically exhausted to the point that I can feel the weight of my eyelashes tired.
Here is a good example of tired. My blood sugar crashed this evening, and I was in the kitchen fumbling to mix up a protein powder that I keep for when I don't feel good enough to eat. I was having trouble opening the new milk jug, so I placed the half gallon container between my knees (now would be a good time to point out that my knees rotate inward with spasticity) to hold it and then firmly twisted the lid. Apparently my knees were applying significant force to the jug because I created a milk fountain. After a few choice and creative curse words, I looked at the large puddle on the floor and looked at my pajama pants which were already wet. I then stripped off my pajama pants and tossed them on top of the milk puddle and let them soak up the mess. I was too tired to go get a towel, or to dig under the sink for a roll of paper towels. I was then too tired and shaky to go get new pajamas, so I wore nothing but a t-shirt until the next time I went into my bedroom for medicine and then I snagged a dry pair of pants. The shakiness is gone thanks to the milk protein drink, and my soaked pajama pants are spending the night in the bathtub until laundry day tomorrow when I will pay a little extra to the wonderful woman who does my laundry for having to deal with stale milk smelling pajamas.
My BIG goal for tomorrow? I am running out of dishes, so I think I need to wash at least a few of those so I have some plates and bowls to eat from.

I am sleepy as I write this, so the odds of it making any sense at all are at best 50/50. :) Make your wagers now! This photograph is of the image on my new favorite T shirt from Zazzle. I may rely upon a wheelchair for mobility, but I still have attitude. For a while now I have been feeling like my life is stuck in this sick and twisted version of the movie Groundhog Day where each day is a repetition of the day before and there is no escape. I thrive on having to think, to problem solve, to be creative, to engage and interact, to create new ways that have never been tried before, to celebrate successes that to the outside world seem insignificant but to the world in which my heart dwells are achievements akin to climbing Mt. Everest backwards while blindfolded. For too many months my life has been on hold. I have been in a stagnant holding position, a medical limbo, a place of existing but not living my life to the fullest. That is not me. I need to live my life and live it out loud, to live it to the limits, to live with passion and pursuing the gifts I have been given and the marvel of truly being alive. I can either wait in this holding position to die, be that at age 35 or 75, and just wander through the intermittent time, or I can take control back in my life and live every single moment that I have no matter what life throws at me. I will rebel against this disorder that continually whispers "you can't" "you lost", "that is impossible" and throw in its face all that I can do, all that is not lost, all that is possible. I will chase my dreams, even if those dreams have been changed slightly, and I will not remain stagnant any longer. It will take time to get a plan of action in motion, but I am beginning the process. I am breaking free of the hold that this has had on my life and declaring that I will live my life boldly, unabashedly, in faith and mercy, and refusing to sacrifice a moment. I must create something powerful, something beautiful, something of change and impact from this situation. I must choose to live instead of just being alive. In the future I see myself returning to college to pursue a Master's Degree, regaining my independence so I no longer feel trapped by relying on others for my access to the world, and reclaiming the passions in my life. I, and only I, will define who I am and what I am capable of, and my life will be limited only by my ability to imagine and to believe and to create adaptations as needed.
If this sounds dramatic, I apologize but this past week has been rough emotionally. This was a break through to realize that life will not be like this forever and that I can change so much of my reality. This life is mine to life, or mine to surrender. I am a rebel with a cause again!
P.S. Please let me know if this does not make any sense and I will rewrite it when I am more awake. I am very groggy and sleepy but wanted to write this tonight.

There are bad days, and then there are bad dysautonomia days. Today is a bad dysautonomia day. I have spent the entire day curled up on the couch and unable to maintain an upright sitting position for more than 5 minutes. Toasting waffles for dinner was a race with my blood pressure to see if the waffles would be toasted before my blood pressure hit the floor (and took me with it). Waffles won, but not by much. I have fought to stay hydrated, which is rather difficult when you never feel thirsty and even more difficult when your intestines decide that they need to rebel and stage a mass evacuation drill and even more difficult when your stomach decides to try to work in reverse, causing severe nausea. I have been alternately a good degree or so below normal body temperature, huddling under my favorite blanket, and a good two degrees above normal, my skin feeling on fire and burning to the touch of anything. My heart decided to join in on the fun and created some funky new rhythms as it also alternated between not quite too slow and not quite too fast. Yet with all of that going on, I still laughed today. I still shared jokes, I still celebrated friendship, I still wrote, I still listened to an audiobook, I still watched favorite tv shows, I still planned and schemed and dreamed. I still lived and laughed and loved. Even on a bad day, on a day when I wanted to cry but honestly could not find the energy to do so, I lived each moment as much as I could. That is a priceless lesson I have learned from this Mitochondrial Disease- even the bad days need to be lived to the fullest. And just for the record, I still hate Pollyanna.

Courtesy of Dysautonomia and the working diagnosis of Mitochondrial Disease, I have no functioning sleep wake cycle. Circadian rhythm is a joke. My poor brain is very discombobulated and without chemical assistance is never able to fully awaken and is never able to fully fall asleep. It is like an endless night of the living dead. I take my "lets convince the brain to wake up medicine" as soon as I get up in the morning, but there is about a one hour lag between when I take them and when they convince my brain to wake up. That one hour has led to some great family stories of the hysterical things I have reportedly said and done, and more than a few unexplained bruises. This morning was a great example of my brain NOT on drugs.
I made myself a cup of coffee, which I can do in my sleep thanks to a coffee maker upgrade back last fall. You pour boiling water across your lap once because of a combination of not being awake and poor arm strength and you quickly problem solve. I love Klaus my Keurig coffee maker. So I took my heat resistant, silicone lidded cup of coffee with me into the bathroom where I get dressed (I know, some may say eww but I was not using the toilet or flushing it so hush). I set my coffee down in the bathroom and then went to gather up my clothes. I then tossed my clothes into the bathroom (my wheelchair does not fit - by a freaking inch- so I transfer to a walker) and went to turn the light on. I stared at the two switches. I tried one, but that only made the room darker so that was no good. I put that back where I found it. I tried the other one, but that just made an annoyingly loud noise, so I put that back where I found it. OK, come on I know one of these had to be the light switch! TWO minutes later I realized the lights were already on!! Nice. As I was getting dressed I discovered that when I got dressed yesterday morning after my bath I had not only put my underwear on backwards but inside out - and had not noticed it for 24 hours. Bonus. I managed to get dressed with everything in the correct position, sipping coffee along the way. Teeth brushed, hair pulled back into sloppy ponytail, I finally looked in the mirror. I decided I needed to apply Cetaphil. I took the lid off of the jar and stuck my finger inside only to discover I had just stuck my finger in my coffee. Coffee as a facial was not going to do it for me. I tried that again with the correct lotion which worked so much better. Then I came out into the living room to put on my AFOs and shoes. Putting my AFOs on is a wrestling match (if you want to know why look at the post two entries ago with photos of the spasticity and dystonia in my feet), so at first it did not occur to me that I was having an unusually hard time getting my brace on. Five minutes later it occurred to me that it was the wrong brace. Odd thing is that the curve of the wrong brace was a more comfortable fit to my foot in many ways - it let me keep them curled.
This is why I have a rule with anyone who might come in contact with me during that hour lag period that nothing I say or do can be used against me. I am not to be held accountable to anything you might convince me to agree to doing and anything I say that makes no sense can not be used to humiliate me. The same thing applies to the lag period between when I take my "convince the brain to go to sleep medicine" and actually fall asleep!!

On Thursday night I completed an at home study to determine whether I am able to maintain my oxygen levels while asleep and whether my heart rate drops during sleep. It was a simple test, all it involved was wearing a pulse oximeter on a finger and sleeping with it. The challenge was in the poor planning of the designer of the system. Actually, the first challenge is the fact that in my sleep I can escape from anything and everything regardless of its medical necessity and have no memory of doing so. While in the hospital I often came close to removing my IV in my sleep because it was bothering me. Bandages have been removed, socks are always removed. So I figured the little finger clip had no chance of lasting through the night. Considering my tools at hand, I broke out the medical tape and fastened that clip to my finger in such a way that I would wake up before victoriously removing it from my finger. Houdini would have been proud of me. So back to the challenge posed by the designer. The finger clip plugged into a monitor and recoding box about the size of an old cassette walkman, and there was exactly 12 inches of cord between the clip and the monitor. Just enough cord to tangle and to hang myself. There was no way to set the monitor beside the bed, it had to climb on in and sleep with me. Not an issue until you consider that someone thought it would be helpful to have color coded LED lights visible from the moon on the recorded that flashed approximately every second. I tried stuffing it in a sock to smother the light and it made no difference. Finally I smothered it with an extra pillow and fell asleep. I woke up at one point during the night to the shock of my left arm being violently jerked straight out from my body as the recorded plummeted from the bed and, since the clip was fastened to my finger securely, took my arm with it. Trust me, that wakes you up quickly. It looked like I was fishing for alien testing equipment over the side of my bed. I reeled it back in, apologized for having committed the crime of moving in my sleep, and promptly fell back asleep. So I should have any results from the test next week some time. One funny moment was just after getting it hooked up and laying down I got the hiccups. In order to stop the hiccups I took a deep breath and held it. I then watched as the oximeter slowly began to register down to 93...90...88..86. Oops, but it got rid of the hiccups!! I included a little note explaining that one on the printout.