My brain has no inherent circadian rhythm. Without the support of (expensive) medications, I do not follow anything that comes close to a 24 hour sleep wake cycle. This poses difficulty when trying to exist in a world that seems rather attached to its 24 hour clock system. It is especially ironic that the same issue that makes it almost impossible to function during the day without medical support also frequently causes frustrating and challenging insomnia at night. I can never independently fully wake up or fully fall asleep. I would like to request repairs be made as that has to be covered under the 50 year, 50,000 mile warranty. :)
So tonight I can not fall asleep. I have tried all of the usual tricks. I laid quietly and listened to an audio book, and while I learned a great deal about Obsessive Compulsive Disorder I learned nothing about sleeping. I listened to soothing, calm classical music and remembered why I hate riding in elevators with built in speakers. Since the idea of warm milk just creeps me out, I had hot ginger tea (awesome tea with ginger, vanilla, and coconut). I even tried counting sheep but that never works for me. I start out all right, but then I start to ponder why it is sheep you are supposed to count instead of anything else. Sheep are not particularly cute animals, nor do they tend to be pleasant smelling. Why not count hummingbirds, or butterflies, or cows jumping over the moon, purple elephants, or frog bumps on a log? Then my imagination becomes bored and so my sheep start appearing in costume - frilly tutus, flapper girl dresses, tuxedos, kilts, etc. By that point I have lost count and am still wide awake.
I have tried sleeping with my head at the head of the bed, at the foot of the bed, and diagonally across the bed. I have done the frustrated sleeper rotisserie where you turn every few minutes from front to side to back to side and back to front. I have read chapters of Awakenings (ironic title, I know) and besides feeling even more assured that trying LDopa was not a good option, I am no closer to sleep than when I woke up this morning. So I have decided sleep is for sissies. I am going to use my hours of sleeplessness to accomplish something - what I am still a little foggy about but I am not going to continue the cycle of a sheep fashion show and sleep rotisserie any more. I will do something productive until my brain figures out that it is dark outside, and it is late, and that on the schedule is this sleep stuff. Anyone for some hot chocolate? :)

* I apologize for the poor quality of the photos in this entry. I forgot my digital camera and had to rely on my cell phone for taking photographs. My cellphone is having issues, but I do not want to replace it until it is thoroughly and officially deceased.*

After much rescheduling and postponements due to medical issues (dysautonomia flat out sucks, there is no pretty way to word it), I was able this week to spend an afternoon in my wonderland. Now from what I understand I am relatively odd in the female world in that I detest shopping for most things. Clothing shopping is torture, grocery shopping is a tedious and dreaded chore, and I am not one to get excited about collecting do-dads and thing-a-ma-jigs to decorate. In fact, I am most happy knowing that if it were necessary I could readily pack all of the belongings that hold importance to me into the trunk/backseat of a car and have no regrets. But there is one kind of shopping, one kind of store in which I can easily spend hours upon hours wandering in wonder and joy. I love their smell, their peacefulness, and their aisle upon aisle of pure magic.

 

Lately I have been reflecting backwards on just how much my life has changed, and I realized that there are big things I miss from my "before" life but also a lot of little things. So I decided to put together a list of the things that I miss the most. I also decided that I would then complement that list by listing all of the things that I truly appreciate that have happened in the "after" life.

Memories
* Driving a car
* Hiking
* Reaching things on higher shelves without having to ask for help
* Being able to wear low socks (AFO braces require high, basically knee socks underneath them)
* Being able to buy shoes easily (AFOs do not fit in hardly any shoes - thus I rock converse with dresses)
* Being able to attend concerts (I lost that to the dysautonomia)
* Being able to take a shower instead of a bath
* Painting my toe nails in less than a two hour process
* Carrying a purse instead of a backpack
* Not looking up to everyone (I have a great view of belt buckles and backsides)
* Teaching
* Swimming without a flotation device
* Being able to break a glass and not have to call someone to come clean it up for me so I don't pop a wheelchair tire
* Wearing my polka dot rainboots and splashing in puddles
* Living in Virginia
* Sitting in a chair without strapping my feet down
* Not glowing in the dark from countless MRIs, CTs, Xrays, and other medical tests

Appreciations
* I totally skip the line at airport security and am through in about 15 minutes total no matter what
* I can run into people who annoy me and then play innocent and no one yells at the chick in the wheelchair
* I am saving a ton of money not having to pay for gas
* I have learned to truly live in the moment because nothing is guaranteed and to appreciate all I have as I am so blessed
* I have some of the most amazing friends and family in the world who have walked this journey with me and never let me fall so low that I could not get up again (Steph, you are an angel)
* God has a great sense of humor
* Laughter can do amazing things (Steph, you made me laugh in a place and time I thought I would never laugh - the tree and the words "hang in there"...priceless)
* Doing the right thing is always worth the cost
* I have a totally new appreciation and perspective on what my kids go through and all that is asked of them, and they are now my heroes even more than before if that is possible
* Every time I was at my weakest God sent me just the person I needed to be there for me and offer me the words and support I needed - a nurse at PWH, a dietician at GWUH, my home healthcare nurse, my amazing friends, prince not so charming
* I have learned to dance a new way to the music of my heart
* Watching how Little Bit sees me, how she asks questions but sees me as just the same Aunt Beth has been the most priceless treasure - my leg muscles may not work so well anymore but I am still her silly Aunt Beth and she loves "helping" by pushing me (even if she can not quite see over the wheelchair to steer!)
* Relearning to eat all over again has taught me to appreciate so many little things that seem natural and go unnoticed until they become a struggle - I appreciate each breath I take, each time I can coordinate movement, each sensation I feel, each swallow, each heartbeat, each taste of food not pureed or from gerber!
* Knowing that God has been with me all of the way and that He has plans to turn what to many would seem a disaster into something beautiful to glorify him!

Time has always been a difficult concept for me to experience in the same ways as others; perhaps because of the lack of a natural sleep wake cycle that would frame things into intrinsic patterns of days and weeks. It is often the case that once I sleep, be it a two hour nap or overnight, an event is transferred to the distant part of my memory so whether it happened that morning or when I was five I experience it pretty much the same way. I realize that I am odd and that this probably does not make sense even in writing, because I know from experience with others and studying in college that this is not the way the human brain is supposed to be wired to work. What can I say, I was never manufactured to factory specifications. ;) I must say there are advantages to my odd sense of time in that I am highly adaptable to most circumstances and can adjust to just about any living situation or routine change.
So with this odd and unique method of experiencing time, and the ongoing process of adapting to and accepting the long term implications and progression of this neurological disorder, my coping has been a bit different from the standard expectations. In many ways this has already felt like "normal" (i.e. what I remember and am used to) for a long time and memories of my other life before this feel as far away as memories of the bedtime stories I used to listen to as a little girl. Yet in other ways it is still raw because each morning there is that briefest of moments where I forget, where everything seems as it always was, and then that moment ends in a sudden realization of all that has happened. It is one of the sweetest moments followed by one of the most bitter. I still long to have the freedoms I used to have, the freedoms of not having to rely on others to access the world in so many ways, the freedoms of movement unhindered in my body. Yet these freedoms seem almost like a dream that I had, almost like a faded old photograph of something that was so long ago instead of less than 18 months.
Even my dreams at night are changing. In my dreams I can still walk, still run, still dance but now at some point in my dream I realize or "remember" that these are things that I can not do and am confused. I may walk in my dreams but I am somehow unable to do the one thing that is necessary to save someone I love. I am becoming restricted even in my dreams. Slowly it creeps in where it does not belong.
I am not dealing with as much anger over this happening as I am dealing with a longing to just finally have answers, to have a diagnosis, to have a name for it and perhaps ideas of how to treat it. I still sometimes have bad days when I mourn for what I lost, even though it may feel like a long time ago it cuts into my heart very deeply now, but I have many more days when I am alive in the moment and thankful for all that I have been given. It is a challenge when new symptoms, or progressions of symptoms of the related dysautonomia continue to pop up, but I have never backed down from a challenge before. I would just really like to know what I am up against, and how best to fight it now and through times to come. Because I have miles to go before I sleep. :)

I don't think Garth Brooks had any idea of just what those lyrics "I am much too young to feel this damn old" meant when he sang them. At age 28 I frequently feel like somehow, even though I still can't pass for 21, I have gotten a recycled body that already has a good 100,000+ miles on it. I am thankful for all of the ways that my body systems manage to get things right each and every day, and marvel at how something so small can cause things to go so wrong. I am still dealing with issues from the dysautonomia - apparently it has decided that it needs some attention now. On Monday at my doctor's appointment my blood pressure was inaudible, which means I was in the freakish low category but somehow I managed to sneak out of there without a trip to the emergency room for fluids and monitoring. I did not get a free pass on everything though and have to undergo some unrelated tests. Oh the fun never ends. When the doctor asked when my last mammogram was I told him I was only 28 and that according to the owner's manual, I had another 12 years on these things before they needed to be taken in to the shop. Well, on Tuesday they get taken in to the shop 12 years early. So anyway, all this week I have been having issues of sudden drops of blood pressure when I sit upright or stand which makes life interesting. I have found myself lying flat on my back in some interesting places in order to avoid passing out. I call it inspecting the ceiling.
Basically other than the medical stuffs my life is pretty boring right now, and boring is pretty good. I do need to come up with a better topic and write more on here soon. Oh I tested my wheelchair in snow this past week and it does well - better than the old rental by a great deal! No more damsel in distress stuck in a snowbank!! I also tried to explain to an old lady today that the reason I looked just like someone who was in a wheelchair and used to live here but with darker hair is because I AM that person and failed miserably (my hair is lighter red in the spring and summer when I am in the sun more). We both ended up confused, but she said next time she saw that other girl she was going to tell her she had a twin. I gave up. I guess I have more than one self. It really is Me, Myself, and I afterall!

After yesterday's day long dysautonomic crash/crisis, today I was delighted to awaken and discover that I was able to tolerate a more upright position without my blood pressure crashing faster than the stock market when bank bailout loans are due. My BP hung out in the 90s/60s today, but I tolerated it better - only having to retreat once to the absolutely flat and immobile emergency crash position. Usually I am fine until it hits 80s/50s, so I think there is something else underlying this ongoing siege of the dysautonomia. One is certainly dehydration, as I am struggling to maintain fluid intake. I do not have any interest in an IV though, so I am doing my best. Trying to drink when you have no sense of thirst, and then adding on top of that feeling poorly is quite a challenge. Tomorrow morning I am going to have some Gatorade dropped off so that should help some with electrolytes - I know pedialyte is better but I have issues with that stuff. Another possible issue is an underlying infection as I have a low grade fever and signs of my chronic sinus infection flaring to a more significant infection. So I am starting a 10 day round of cipro tonight to hopefully take care of any underlying infection. I also have an appointment Monday with my internal med. Dr. just by chance, so if I am not better I can mention this all to him - not that he has any clue how to treat dysautonomia. :) Gotta love rare diseases. Bonus for the day was being able to sit propped up on the couch and in the recliner! Also able to enjoy watching the opening ceremony of the Olympics (I am getting tired so I am recording it now to watch tomorrow AM). I did well in my wheelchair to maneuver around the house, but for any extended time I would start to lose trunk control and just was too weak to maintain a good position in my chair. Hopefully a full good night's sleep, fluids, and antibiotics will help tip things back into my favor!

Yes, it is 2:30 am and I am lying on the couch awake, having a small snack after just having taken a bath, and writing here in my journal. No, this does not seem odd to me but I have the full context of my day. To put it bluntly, the dysautonomia kicked my arse today and spared nothing in its processing malfunction. Sometimes I can figure out a trigger for what set off the dysautonomic "crash" or crisis, but considering I woke up at 7:30am with a severe headache, nausea, and low blood pressure I am pretty sure there was no extrinsic trigger unless sleeping is now bad for me. All day my blood pressure hung out in the 90s to 80s over low 60s/upper 50s. Not the lowest I have ever gotten, but sustained over a long period of time it was miserable. I spent over 6 hours lying absolutely flat, trying as hard as possible not to move, listening to audiobooks and sharing my bed with my trusty blue barf bucket emesis basin. The rest of the time was spent lying flat on the couch. I drifted in and out of sleep, and ate a grand total of 2 bananas smashed up, a handful of pretzels, and a popsicle. I fell sound asleep at about 8pm and slept until 12:30am, when I woke up and realized that my brain had rediscovered how to regulate and process the little things in life like blood pressure, heart rate, and digestion. Unfortunately I was dealing with dehydration from not drinking enough while being so sick (yes, I could have gone to the hospital, but I was feeling too miserable to deal with people poking at me and all they can do is run IV fluids) so I was having severe muscle cramps. I made myself a large cup of green tea and took a warm bath to relax the muscle spasms. Now I am working on catching up on fluids a bit before I try to sleep some more. My poor brain is still very edgy, and a bit confused regarding time of day, and processing things a bit slower than normal but I will take that over being literally knocked flat on my back for17+ hours. The dysautonomia is probably the hardest thing I deal with medically because it has the capability, and frequently uses it, to bring my life to a sudden halt and to hold me captive to a body that is flashing error messages and failing to compute the most basic of tasks. I never know when it is going to go into a crash/crisis and there is no current treatment in place other than fluids and time to treat a crash/crisis. It has the capacity to suddenly become life threatening, and I always have to be vigilant about trying to get enough fluids even though the dysautonomia causes anhydrosis - a lack of the ability to feel thirst- and consistent nutrient intake even with impaired digestion and avoiding known triggers and trying to catch a crisis before it escalates. I so appreciate and am thankful for all of the amazing things the human body does every moment, every day without our conscious thought and am doubly thankful when my brain gets them right instead of hitting an error message.