Another Medical Tuesday
Today I had a follow up appointment with my regular neurologist. She was thrilled and excited to hear that the specialists at the MDA clinic had been able to give me a working diagnosis that he is confident will be proven through subsequent testing. The focus today was the treatment of the symptoms rather than diagnosis. So we rearranged my medications that are used to treat the spasticity/dystonia in my legs to try to focus in on a combination that works. Really good news - the florinef seems to be working as my BP at the office today was 114/75!!!!! I NEVER see numbers that high!!! If we can get it a little higher and stable, then we may be able to try the Baclofen again - I got great results from the Baclofen but it caused a dangerous drop in blood pressure that led to a tour of the local emergency room when I hit numbers like 78/45 and was none to happy about it. The doctor noted that my endurance and strength have declined - for example I used to be able to stand with my braces or minor support (the counter) to complete a washing of dishes. Now after 2-3 minutes I have to sit back down in my wheelchair because otherwise my legs are going to go out from under me. I used to on a very good day be able to wheel about a mile, now I am lucky if I can wheel a block to the grocery store and library on a very good day. We are going to try to add in a low dose of an ADHD medication to treat the overwhelming fatigue because there are some days when even on a solid dose of narcolepsy medication I sleep until 3 or 4 in the afternoon and I am so exhausted that getting dressed is a massive victory. It is difficult to plan anything because I never know if it will be a day that I have energy or a day that I can barely get up out of bed to lay on the couch. Things that influence my energy include how I slept the night before, if I have any lingering or low level (let alone full out) infection, how the dysautonomia is behaving, and sometimes apparently the flight pattern of a butterfly in Brazil. :) I totally forgot to ask her what my PFT results were, but I am assuming if they were dangerously abnormal I would have been notified. I was also diagnosed as having myoclonus, and in a few weeks have to have an EEG done to make sure there are no signs of seizures and that it is originating in the muscles. On the same day I will be evaluated to determine if I would benefit from Botox injections in my legs, and then they will begin the process of convincing my insurance company that it is medically necessary - you know, that I am not treating wrinkles in my feet for cosmetic reasons. ;) The idea of being able to straighten my toes and get my foot flat again is an amazing concept that seems beyond belief.
Today started out far too early for my brain and body to keep up, but it was worth it because on the way to the appointment my father took me out to breakfast at a little hole-in-the-wall place that had awesome breakfast food. We shared one breakfast and I still could not finish my share!! Through all of this I have really been amazed and so appreciative of how my family has come together and been there for me. Never has my father or stepmother or brother complained about the appointments they have taken me to, about the waiting in waiting rooms, about the long drives (because the best neurologists are over an hour away), about the seemingly endless tests. My mother has been my emotional support, and she has never complained once when I woke her up in the middle of the night (nights are my toughest times) in tears of frustration or when I let it all out on her. Everyone has adapted to having to accommodate my wheelchair and my new limitations without making me feel like I am a burden or that I am making things more difficult for them. I am so blessed.
Today started out far too early for my brain and body to keep up, but it was worth it because on the way to the appointment my father took me out to breakfast at a little hole-in-the-wall place that had awesome breakfast food. We shared one breakfast and I still could not finish my share!! Through all of this I have really been amazed and so appreciative of how my family has come together and been there for me. Never has my father or stepmother or brother complained about the appointments they have taken me to, about the waiting in waiting rooms, about the long drives (because the best neurologists are over an hour away), about the seemingly endless tests. My mother has been my emotional support, and she has never complained once when I woke her up in the middle of the night (nights are my toughest times) in tears of frustration or when I let it all out on her. Everyone has adapted to having to accommodate my wheelchair and my new limitations without making me feel like I am a burden or that I am making things more difficult for them. I am so blessed.
Naming the Monster
Today I heard words that I never expected to hear, words that I was too battle weary to hope for anymore. As I sat in my curtained off section of the physical therapy office converted for the day into the MDA clinic, I listened in a bewildered daze as the most amazing of doctors informed me that ALL of my symptoms make sense - that as he listened to me and reviewed my chart he immediately began to get an understanding of what he thinks is going on. After spending 28 years with an ever growing list of medical issues that no one could ever put together or explain, and after 18 months of extreme frustration in which I have watched my life change in ways I never imagine, he thinks he knows where we need to focus our attention in diagnosis. He gave the monster a name, and he is confident in pursuing this diagnosis. It was not the monster I was expecting to possibly hear called out, but I am so thankful to have a name for it, to have a direction, and to have new found supports. The monster is Mitochondrial Disease and the fight is on!
I qualify as a patient under the MDA clinics, and so will be continuing to see the neurologist and team of specialists there. We are also going to do genetic testing for the specific subtype of Mitochondrial Disease that the doctor is considering most likely. In the near future I will be having an occupational therapist evaluate me at home for safety, functionality, and to suggest any equipment or changes that could be of assistance. We are working to set up PT, OT, and SLT (speech language therapy) that will be covered by my insurance and that I can afford. I am also going to undergo testing to make sure that my oxygen levels maintain an acceptable level during the night. Finally, I was started on a low dose of Florinef (sp?) to attempt to coax my blood pressure into a more acceptable range as the neurologist feels that just the constant low blood pressure can cause severe headaches, fatigue, difficulty concentrating and with memory, dizziness, and shakiness which certainly is not helping the situation.
I physically am not any better than I was this morning; but by having a name for the monster I feel empowered. By having a name for the monster we can also have a general understanding of what is within the realm of expectations, and what can be done to fight back. By having a name for the monster I can educate myself, I can access "community", and I can see the monster for what it is, and for what it is not.
If this is a bit jumbled, I am very tired after a long day and I am still processing this information. I am thankful for the amazing neurologist and for the hope I received today, and for the MDA clinic that allowed me access to top specialists. I just need to get acquainted with this monster and then tuck it away in its place.
I qualify as a patient under the MDA clinics, and so will be continuing to see the neurologist and team of specialists there. We are also going to do genetic testing for the specific subtype of Mitochondrial Disease that the doctor is considering most likely. In the near future I will be having an occupational therapist evaluate me at home for safety, functionality, and to suggest any equipment or changes that could be of assistance. We are working to set up PT, OT, and SLT (speech language therapy) that will be covered by my insurance and that I can afford. I am also going to undergo testing to make sure that my oxygen levels maintain an acceptable level during the night. Finally, I was started on a low dose of Florinef (sp?) to attempt to coax my blood pressure into a more acceptable range as the neurologist feels that just the constant low blood pressure can cause severe headaches, fatigue, difficulty concentrating and with memory, dizziness, and shakiness which certainly is not helping the situation.
I physically am not any better than I was this morning; but by having a name for the monster I feel empowered. By having a name for the monster we can also have a general understanding of what is within the realm of expectations, and what can be done to fight back. By having a name for the monster I can educate myself, I can access "community", and I can see the monster for what it is, and for what it is not.
If this is a bit jumbled, I am very tired after a long day and I am still processing this information. I am thankful for the amazing neurologist and for the hope I received today, and for the MDA clinic that allowed me access to top specialists. I just need to get acquainted with this monster and then tuck it away in its place.
Faith and a Long Awaited Appointment
This afternoon I have an appointment at the regional MDA clinic. I was referred by my amazingly dedicated primary neurologist in an attempt to try to find a diagnosis (there is at least one specifically that she has in mind to rule in or out). To say that I am nervous and anxious would be a wee bit of an understatement. Yet I am not nervous and anxious for the reasons that many people who would find themselves at such a clinic would be; I am not afraid of hearing that I have a certain disease or disorder. We already know that I have some sort of significant progressive neurological disorder that has tossed my life inside outside upside down. We already know there is some major malfunction that ties in with the severe dysautonomia. I have had to accept that something has forever changed how I am able to use my body as a tool to access the world, and I know that I am dealing with something that has a little more of an attitude problem than the common cold. What we do not know is WHAT exactly the disorder is, we have no name for it, and with no name we have no way of knowing how to fight the monster or what to expect from it. I am nervous and anxious that once again this will be a dead end. I am having to slowly accept that modern medicine has limitations and we may never be able to give a name to this monster, and I will forever have to live in the gray area of the unknown. For me, this is very difficult because I crave even the illusion of control in my life. All along none of this has been in my control, my life has been God's from the beginning but for so long I was able to fool myself into believing that I had some control and in this I found comfort. Now that comfort is gone and I am learning what true faith is. Faith is in the gray, unknown area - in accepting that even if there is never an answer it will all be used to God's glory and that from what seems like a less than ideal circumstance to me will come amazing blessings. Faith is accepting that I don't have to have all of the answers. Faith is hard. For today, faith is believing that God has already created the perfect plan for this day and that His will for it is better than mine - be that an answer or not. For today, faith is letting go of the fear and anxiety and trusting that God will provide all I need.
More Air
I have a long and miserable history with flat tires, including an infamous incident with a gigantic pothole impersonating an innocent mud puddle and breaking the rim with a shocking thunk. I still drove another several miles on that busted rim, and no I have no idea how I managed to do that but I am female and I don't "do" cars, and since it was driving I figured it couldn't be that bad (see my logic???). So perhaps it was not the best idea in the world for me to have a wheelchair with regular tires. I can not technically check the air in the tires on them because with my stunning and amazing fine motor skills, by the time I got the stupid pressure gauge thingy on right I would have let all the air out of the tire and be able to go "yep, its flat!". Instead I use the subtle system of observation - when my brakes start slipping that is usually a good sign that I need more air.
So I figured it would be a quick stop this morning on the way to the grocery store with my Dad for back up (cart driver) to put air in the tires. He of the more dexterous fingers checked the air in the tires, and my method was right. The darn things needed more air. However, the "Free Air" machine apparently had decided that its goal for the day was not to provide Free Air but rather to "free" air from whatever it was trapped inside. So by the time my father was done wrestling with my wheelchair and the machine, I was able to go "yep, its flat!!". In this cliche of a small town, the other gas station (because there are only two) does not have an air machine. We checked. Neither does the little oil change joint. We checked. After 15 minutes of driving around a very small town, my dad decided the easiest solution would be to just go to his house and have him pull his air compressor out of the garage to fill up the now very flat tires. Of course the air compressor is located in the far back corner of the garage because who needs an air compressor in the great frozen north before say, June? So what should have been a quick 5 minute process took about 40 minutes. But the good news is that now that there is actually the proper amount of air in my tires, it is so much easier to drive and maneuver. Apparently low tires make it feel like you are pushing the wheelchair through wet concrete. What do I know, I am a girl who never even figured out how to put the chain back on my bicycle or put air in the bike tires!
So I figured it would be a quick stop this morning on the way to the grocery store with my Dad for back up (cart driver) to put air in the tires. He of the more dexterous fingers checked the air in the tires, and my method was right. The darn things needed more air. However, the "Free Air" machine apparently had decided that its goal for the day was not to provide Free Air but rather to "free" air from whatever it was trapped inside. So by the time my father was done wrestling with my wheelchair and the machine, I was able to go "yep, its flat!!". In this cliche of a small town, the other gas station (because there are only two) does not have an air machine. We checked. Neither does the little oil change joint. We checked. After 15 minutes of driving around a very small town, my dad decided the easiest solution would be to just go to his house and have him pull his air compressor out of the garage to fill up the now very flat tires. Of course the air compressor is located in the far back corner of the garage because who needs an air compressor in the great frozen north before say, June? So what should have been a quick 5 minute process took about 40 minutes. But the good news is that now that there is actually the proper amount of air in my tires, it is so much easier to drive and maneuver. Apparently low tires make it feel like you are pushing the wheelchair through wet concrete. What do I know, I am a girl who never even figured out how to put the chain back on my bicycle or put air in the bike tires!
Sleep is for Sissies
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? :)
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? :)
In Wonderland
* 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.
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.
A bookstore is a very dangerous place for me to be unsupervised because there are just so many BOOKS!! How do you ever pick just one?!?! I have my own personal strategy for visiting a bookstore. I first peruse the books on the big displays - the new releases, the big sellers, the mass market successes. Then I explore further. I seek out hidden gems that are tucked away and forgotten about, little treasures without the fanfare. I spent a good hour just breathing in the smell of new books, touching them, reading their potential, and seeking the ones that pulled at my heart. I visited the classics as I always do, but this time none of them called to me.
Perhaps it is the teacher in me, perhaps it is the child that refuses to grow up, but no visit to a bookstore is complete without spending time exploring the Children's section.
I flipped through some of my absolute favorites from childhood, and discovered new books that I would love to share with a class full of kids.
Once I had finally settled on my book....s...okay I confess I ended up buying 4 new books, a new journal in which to keep track of all the books I want to read and all my favorite books, new bookmarks for my new book, and an audiobook, what can I say?!?!? Hello, my name is Bethany and I am addicted to books. Anyway, once I had settled on my books, I went over to the coffee shop where I enjoyed a delicious chocolatey coffee treat and dove in to one of my choices.
I wish I could have spent more time at the bookstore, but I think my bank account is thankful that I had to leave to catch the bus after enjoying my coffee and book for a nice 30 minutes. Otherwise a few more books may have found a new home. ;)
Books are my wonderland, my escape, my journey through the world, my fountain of knowledge, my means of making sense of things that do not make sense. Words are magical to me. I think in words, I understand in words, I express myself in words, I imagine in words, I process in words, I find meaning in words, I discover truth in words. Words can change a life, can shape the future, and can alter history. So books, as the keepers of words, are very potent. I love being surrounded by their strength and beauty and passion. I love the vast knowledge and possibilities and perspectives and truths all waiting to be discovered. I love being surrounded by so much more than myself.
Memories and Moments
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!
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!
