The warm blanket we snuggle under.
The kitty who meows us awake.
The neighbor who looks after us (and who we look after).
The kitty who appreciates our attention.
The coffee shop employees who know my order.
The job that gives me goals and motivation (and health care and a paycheck).
The kitty who finally trusts us.
The family for being who they are.
The meals we share.
The quiet times in the evening hours when it's enough to just sit beside you.
The last words we exchange before we sleep.
For this, and for so much more, I have much to be thankful for.
Thursday, November 24, 2011
Friday, November 18, 2011
A Totally True Tabby Tale
This
is Tabby. As you can see she'd like to shake your hand. (And yes, she has thumbs.)
Anyway, that's Tabby. Tabby is a gooooooooooood kitty.
It is mouse season here on the East Coast. As it gets colder and wetter, the outside mice get the brilliant idea to move indoors. There's not a lot one can do except to accept it and set traps in obvious "mice" areas. We have VERY cat-safe traps, so that little paws are kept safe. It wouldn't be a problem for Tabby so much ... she's beyond kitten-hood (about 10ish years old) but Shiloh is estimated to be a curious teen ... about 3 years. So yeah, we're careful.
We've known we have mice (plural ... because honestly no one has "mouse") for a couple of weeks. Not because of signs or droppings but because Tabby has been staring at corners and doors and just generally acting weird (even for a cat).
Last week, I moved the kitty toy box from the corner of the living room because Tabby was staring at it ... and she pounced. (She's about 12 lbs but even so - it was a definite pounce.) The mouse she caught had a body length that was smaller than a large paperclip ...... this was a smalllllllllllllllllllllllll mouse. She looked up at me, mouse mouth and all, as if to ask "ok so now what" and I pleaded to her to please please please head into the kitchen (non-carpeted floor and not a lot of super heavy things to run underneath) and she LISTENED to me!!! SUCH a good kitty. By the time she dropped the little creature on the kitchen floor to show me, it was very close to dying so I praised her (a LOT) and disposed of said critter.
Fast forward to a few nights ago. (Well, a few mornings actually ... 3:20am according to the bedroom clock.) Dead quiet throughout the house. Not a creature was stirring, not even a ..... well ... actually ...
So Tabby comes padding quickly into our bedroom (her little feet on the carpet make a small "psshh" sound as she walks) and says, in an urgent-type voice, "Meow! Meow meow meow! Rrrrow merrow!" which was either "Come quickly, Timmy's fallen into the well again" or "Come see the snack I have to share!" The Awesome Boyfriend was awake and standing before I was fully awake but we both followed as Tabby proudly marched into the kitchen to show us her latest hunting victim ... another ridiculously tiny mouse that was, again, nearly dead. "Such a gooooood kitty" we said, while rubbing our eyes and reaching for a paper towel and a plastic zip-top bag.
And of course she is a very good kitty. But consider this ...
She caught this creature somewhere in the house, likely played with it for awhile, left it in the kitchen, walked into our room (when she could have VERY easily brought the mouse with her), told us to come to the kitchen, and went back to the kitchen for her praises and kudos. I've had some smart kitties before ... but ... geez, that's impressive as heck to me! It seems against the nature of a beast to hunt and then LEAVE the hunted to go get the humans to show off the kill. Seriously I can't believe she didn't bring the mouse into our bedroom.
Needless to say, Tabby's getting extra treats for this. And I'd be honored to shake her hand.
Anyway, that's Tabby. Tabby is a gooooooooooood kitty.
It is mouse season here on the East Coast. As it gets colder and wetter, the outside mice get the brilliant idea to move indoors. There's not a lot one can do except to accept it and set traps in obvious "mice" areas. We have VERY cat-safe traps, so that little paws are kept safe. It wouldn't be a problem for Tabby so much ... she's beyond kitten-hood (about 10ish years old) but Shiloh is estimated to be a curious teen ... about 3 years. So yeah, we're careful.
We've known we have mice (plural ... because honestly no one has "mouse") for a couple of weeks. Not because of signs or droppings but because Tabby has been staring at corners and doors and just generally acting weird (even for a cat).
Last week, I moved the kitty toy box from the corner of the living room because Tabby was staring at it ... and she pounced. (She's about 12 lbs but even so - it was a definite pounce.) The mouse she caught had a body length that was smaller than a large paperclip ...... this was a smalllllllllllllllllllllllll mouse. She looked up at me, mouse mouth and all, as if to ask "ok so now what" and I pleaded to her to please please please head into the kitchen (non-carpeted floor and not a lot of super heavy things to run underneath) and she LISTENED to me!!! SUCH a good kitty. By the time she dropped the little creature on the kitchen floor to show me, it was very close to dying so I praised her (a LOT) and disposed of said critter.
Fast forward to a few nights ago. (Well, a few mornings actually ... 3:20am according to the bedroom clock.) Dead quiet throughout the house. Not a creature was stirring, not even a ..... well ... actually ...
So Tabby comes padding quickly into our bedroom (her little feet on the carpet make a small "psshh" sound as she walks) and says, in an urgent-type voice, "Meow! Meow meow meow! Rrrrow merrow!" which was either "Come quickly, Timmy's fallen into the well again" or "Come see the snack I have to share!" The Awesome Boyfriend was awake and standing before I was fully awake but we both followed as Tabby proudly marched into the kitchen to show us her latest hunting victim ... another ridiculously tiny mouse that was, again, nearly dead. "Such a gooooood kitty" we said, while rubbing our eyes and reaching for a paper towel and a plastic zip-top bag.
And of course she is a very good kitty. But consider this ...
She caught this creature somewhere in the house, likely played with it for awhile, left it in the kitchen, walked into our room (when she could have VERY easily brought the mouse with her), told us to come to the kitchen, and went back to the kitchen for her praises and kudos. I've had some smart kitties before ... but ... geez, that's impressive as heck to me! It seems against the nature of a beast to hunt and then LEAVE the hunted to go get the humans to show off the kill. Seriously I can't believe she didn't bring the mouse into our bedroom.
Needless to say, Tabby's getting extra treats for this. And I'd be honored to shake her hand.
Wednesday, November 16, 2011
The November Chronicles
I will write about my MRI experience in time. Yesterday I experienced something and, since it is fresh in my mind, I'm gonna write about it.
*****************
Along with "arm tremor", I've experienced an extreme decline in fine motor control in my right hand. My once blazing typing speed has dropped considerably, and I just don't even enjoy using my laptop in my downtime anymore because it's more frustrating than anything else.
Because I've slowly developed this tremor, I've slowly found ways to work around it. Since my handwriting is so stupidly tiny and damn near impossible to read, I either use pre-printed labels or I create a document on my computer and fold it into a note card or whatever. If I can pre-fill out forms in my own time, that's ideal. I also have a weird "left-handed assist" thing I do whenever I type now. I get to a point of typing where I use my left index fingers to reset my right hand ... kind of picking it up and dropping it back onto the keyboard ... and then I carry onwards. I also use my left hand for ANY mouse-related computer stuff, even 'tho I am (of course) right handed.
When I'm sitting on the couch at home, I have a pillow shoved up under my right arm for support. Even though I'm not asking my arm to DO anything. I also occasionally give my right hand a brief massage with my left hand. I do random arm "windmill" movements to keep my shoulder lose. I push my right arm straight against something solid to work out any tightness in my elbow, which aches a little from being folded at my side all day. (Even when I'm walking. Actually ESPECIALLY when I'm walking.)
All of these things are dexterity-related. None of them are strength-based things. I do *feel* as though I have lost muscle tone in my right arm from overall lack of use over the past three years, but that's from just not trusting the arm itself. It has betrayed me.
*****************
I met last week with a Physical Therapist. I arrived about 9:40am because I would be asked to fill out a few forms (ugh), sign and date here, initial here, and then I sat quietly and waited for just a few moments before Janie called my name. We spoke (and did various tests) for an hour. She had me seated in curtained-off area in a very busy room but I had her full attention. She was a good listener and allowed me to do my best to answer her questions as honestly as I knew how. I explained that I didn't have a loss of mobility so much as a lack of dexterity. I also shared with her my fears over loss of muscle tone in my not-as-actively-involved right arm, but explained that I really believed that was more in my head than my arm.
We tested grip strength. We ran movement-based tests. We tested resistance and push and pull but when all was said and done, she confirmed pretty much what I had already known: there was no obvious difference in strength between my left hand and my right. She did, however, ask if I'd be willing to return the following week to see an Occupational Therapist, who would be better suited to address my dexterity issues. I was fine with this and we made the appointment for Tuesday at 8am, which was my choice.
*****************
Yesterday I arrived at 7:55am for my 8am appointment. I was given the same forms to sign and initial. Janie walked by and greeted me (by name) and said that Dawn would be with me shortly. The front desk then pulled Janie aside and asked (in a voice I probably wasn't meant to hear) if she perhaps still had my chart. All the notes we'd done ... tests we'd gone through ... anything we'd thought was important was in that now-missing chart. This was less than ideal.
At 8:10am my chart was found and at 8:15am I was called back. I was given water to take my daily dose of Selegiline with and Dawn said "so what does that do for you then?" I told her that it helped to make my arm tremor slightly less obvious. "So if you take enough of that, the shake goes away?" she asked. "If only" was my reply. "I was taking something else but it was over-treating it and in time would cause unwanted movements." She looked sideways at me. "If you take a pill to undo shakes it will cause you to shake?" she asked. "Basically yeah" I said. "Have you seen a Parkinson's patient who has kind of 'flowing' motions? That's the side effect I'm trying to avoid for as long as possible."
While none of these questions were annoying or extreme, the idea that this sort of information was new to the person who I was hoping would help me control the dexterity of my fingers was a bummer.
*****************
We spent most of the next 40 minutes testing ... my arm strength. Given that Dawn was used to dealing with patients who had been in splints or stitches or casts, it wasn't surprising that she didn't have a lot of things to suggest for maintaining dexterity but it WAS frustrating. If she'd gone over my chart in advance ... ohhhhh wait, they'd lost my chart until 5 minutes before I sat down.
As I was answering her questions, Dawn would walk over to another patient and say "uh huh" but I didn't get the feeling she was actually listening to my responses. All in all, it felt like ... being in a hair salon. Same gossip-y vibe, same regular customer base, same rotating of who is overseeing someone's progress ... it was disappointing. I did actually speak up ... more than once ... to say "it's not connected to strength or muscles, it's about nerves" and "it's not a strength thing, it's a control thing" but I was clearly wasting my time. And Dawn's. I guess that was it ... I felt like it was a date neither of us had the guts to bow out of. She finished the appointment with a basic "call me if you want more ideas" but I'd stopped caring about any of her ideas about 20 minutes before that.
I walked out feeling like a guest speaker who had been invited to a forum attended by convicts. I wasn't prepared and she wasn't interested. We were both there because we felt we had to be.
*****************
It's only been two months since my diagnosis, and I don't KNOW what kind of questions to ask, or even WHO to ask. I can only describe what my hand and arm feel like ... I don't know what to do about it. I know what I've BEEN doing about it but that's not working as great as I'd like anymore (she typed, using her left hand to reset her right). So yes, I've muddled through this far but I'd like more muddling tools. And the "not being listened to" part? Yeaaaaaah ... that's not cool.
*****************
I arrived at work feeling dejected. I realize and accept that not every medical or service-related hospital-type person will be up on all their "Parkinson's" info but this was frankly just a case of "lazy". And honestly, pre-diagnosis this wouldn't have been a trigger with me at all. But that's not the situation, which is unfortunate all the way around. I'm post-diagnosis and this IS a trigger. Again, today is the best I will be. By this time tomorrow, I will miss my level of what I can do today. My time - with regards to what I can do now, how I can prepare for the future, and steps I can take to grasp (no pun intended) onto any level of achievement - is being stolen from me at a rate I do not know by a thief I cannot even see, let alone fight. Am I frustrated? I don't even have time for that.
I was met at my desk by a co-worker, Liz, who happens to have all kinds of connections in the medical world specific to Neurology and when I lamented "I just need a name of an OT with Parkinson's experience", Liz (bless her heart) said "I know three. I'll see who has room and get a name to you."
I hope Dawn doesn't wait to hear from me for too long.
*****************
Along with "arm tremor", I've experienced an extreme decline in fine motor control in my right hand. My once blazing typing speed has dropped considerably, and I just don't even enjoy using my laptop in my downtime anymore because it's more frustrating than anything else.
Because I've slowly developed this tremor, I've slowly found ways to work around it. Since my handwriting is so stupidly tiny and damn near impossible to read, I either use pre-printed labels or I create a document on my computer and fold it into a note card or whatever. If I can pre-fill out forms in my own time, that's ideal. I also have a weird "left-handed assist" thing I do whenever I type now. I get to a point of typing where I use my left index fingers to reset my right hand ... kind of picking it up and dropping it back onto the keyboard ... and then I carry onwards. I also use my left hand for ANY mouse-related computer stuff, even 'tho I am (of course) right handed.
When I'm sitting on the couch at home, I have a pillow shoved up under my right arm for support. Even though I'm not asking my arm to DO anything. I also occasionally give my right hand a brief massage with my left hand. I do random arm "windmill" movements to keep my shoulder lose. I push my right arm straight against something solid to work out any tightness in my elbow, which aches a little from being folded at my side all day. (Even when I'm walking. Actually ESPECIALLY when I'm walking.)
All of these things are dexterity-related. None of them are strength-based things. I do *feel* as though I have lost muscle tone in my right arm from overall lack of use over the past three years, but that's from just not trusting the arm itself. It has betrayed me.
*****************
I met last week with a Physical Therapist. I arrived about 9:40am because I would be asked to fill out a few forms (ugh), sign and date here, initial here, and then I sat quietly and waited for just a few moments before Janie called my name. We spoke (and did various tests) for an hour. She had me seated in curtained-off area in a very busy room but I had her full attention. She was a good listener and allowed me to do my best to answer her questions as honestly as I knew how. I explained that I didn't have a loss of mobility so much as a lack of dexterity. I also shared with her my fears over loss of muscle tone in my not-as-actively-involved right arm, but explained that I really believed that was more in my head than my arm.
We tested grip strength. We ran movement-based tests. We tested resistance and push and pull but when all was said and done, she confirmed pretty much what I had already known: there was no obvious difference in strength between my left hand and my right. She did, however, ask if I'd be willing to return the following week to see an Occupational Therapist, who would be better suited to address my dexterity issues. I was fine with this and we made the appointment for Tuesday at 8am, which was my choice.
*****************
Yesterday I arrived at 7:55am for my 8am appointment. I was given the same forms to sign and initial. Janie walked by and greeted me (by name) and said that Dawn would be with me shortly. The front desk then pulled Janie aside and asked (in a voice I probably wasn't meant to hear) if she perhaps still had my chart. All the notes we'd done ... tests we'd gone through ... anything we'd thought was important was in that now-missing chart. This was less than ideal.
At 8:10am my chart was found and at 8:15am I was called back. I was given water to take my daily dose of Selegiline with and Dawn said "so what does that do for you then?" I told her that it helped to make my arm tremor slightly less obvious. "So if you take enough of that, the shake goes away?" she asked. "If only" was my reply. "I was taking something else but it was over-treating it and in time would cause unwanted movements." She looked sideways at me. "If you take a pill to undo shakes it will cause you to shake?" she asked. "Basically yeah" I said. "Have you seen a Parkinson's patient who has kind of 'flowing' motions? That's the side effect I'm trying to avoid for as long as possible."
While none of these questions were annoying or extreme, the idea that this sort of information was new to the person who I was hoping would help me control the dexterity of my fingers was a bummer.
*****************
We spent most of the next 40 minutes testing ... my arm strength. Given that Dawn was used to dealing with patients who had been in splints or stitches or casts, it wasn't surprising that she didn't have a lot of things to suggest for maintaining dexterity but it WAS frustrating. If she'd gone over my chart in advance ... ohhhhh wait, they'd lost my chart until 5 minutes before I sat down.
As I was answering her questions, Dawn would walk over to another patient and say "uh huh" but I didn't get the feeling she was actually listening to my responses. All in all, it felt like ... being in a hair salon. Same gossip-y vibe, same regular customer base, same rotating of who is overseeing someone's progress ... it was disappointing. I did actually speak up ... more than once ... to say "it's not connected to strength or muscles, it's about nerves" and "it's not a strength thing, it's a control thing" but I was clearly wasting my time. And Dawn's. I guess that was it ... I felt like it was a date neither of us had the guts to bow out of. She finished the appointment with a basic "call me if you want more ideas" but I'd stopped caring about any of her ideas about 20 minutes before that.
I walked out feeling like a guest speaker who had been invited to a forum attended by convicts. I wasn't prepared and she wasn't interested. We were both there because we felt we had to be.
*****************
It's only been two months since my diagnosis, and I don't KNOW what kind of questions to ask, or even WHO to ask. I can only describe what my hand and arm feel like ... I don't know what to do about it. I know what I've BEEN doing about it but that's not working as great as I'd like anymore (she typed, using her left hand to reset her right). So yes, I've muddled through this far but I'd like more muddling tools. And the "not being listened to" part? Yeaaaaaah ... that's not cool.
*****************
I arrived at work feeling dejected. I realize and accept that not every medical or service-related hospital-type person will be up on all their "Parkinson's" info but this was frankly just a case of "lazy". And honestly, pre-diagnosis this wouldn't have been a trigger with me at all. But that's not the situation, which is unfortunate all the way around. I'm post-diagnosis and this IS a trigger. Again, today is the best I will be. By this time tomorrow, I will miss my level of what I can do today. My time - with regards to what I can do now, how I can prepare for the future, and steps I can take to grasp (no pun intended) onto any level of achievement - is being stolen from me at a rate I do not know by a thief I cannot even see, let alone fight. Am I frustrated? I don't even have time for that.
I was met at my desk by a co-worker, Liz, who happens to have all kinds of connections in the medical world specific to Neurology and when I lamented "I just need a name of an OT with Parkinson's experience", Liz (bless her heart) said "I know three. I'll see who has room and get a name to you."
I hope Dawn doesn't wait to hear from me for too long.
Monday, November 14, 2011
The November Chronicles
I wrote earlier that there were some ... let's call them "adventures" ... in doing some of my tests while traveling down the road to confirm my diagnosis.
Today's "adventure" is gonna go straight down the toilet.
*****************
It was recommended by my neurologist that blood work, a urinalysis, and an MRI be conducted to check for *any* other factors that could be behind my arm tremor.
You see - as of today anyway - one cannot get an eye scan, brain scan, have a blood count done or do ANY other test to confirm a diagnosis of Parkinson's Disease. (It's one of maaaaaaaaaaany medical things I've learned as of late.) One can do those tests and confirm other things, but there is no marker known where a conclusive diagnosis of Parkinson's can be made. (This is kinda amazing, especially when one considers that Dr. James Parkinson first noted "Shaking Palsy" in 1817.)
The blood work was easy. Four vials were taken by a Phlebotomist who, judging from her skill, had been practicing for decades. I've only had an issue with needles once in my life, and (honestly) it was my doctor's fault. (You should NEVER show a six year old the size of the needle used for a tetanus shot.)
So after the vials of blood were labeled and corked, I was given instructions regarding the procedures required for a proper urinalysis to be conducted. When the collection was done, the sample would be tested for high amounts of copper, which could indicate abnormal liver function and/or Wilson's Disease (which can cause damage to the nervous system).
*****************
Warning: I will do my best to describe this tastefully and accurately. I may not succeed in the former.
*****************
I was told that my collection was to be a 24-hour sample, but not to include my first morning visit to the facilities, because really that's from the night before, I guess. I was given a container which I'd use to hold the collection and a funnel-like device because ... because ... well because women and men are different, that's why.
None of that was what I envisioned to be my biggest problem. No ... my biggest problem was going to be how one collects their - fluid output - for the day when one is at work. I thought about it and decided the best course of action would be to not act at all, meaning no at-work bio-breaks whatsoever.
*****************
That day for me went like this:
Wake up.
Get ready for work.
Feed pets.
Use facilities, no collection required.
Kiss Awesome Boyfriend before heading out the door.
Notice the skies seem kinda dark and cloudy.
Stop at coffee shop for usual order (20oz of Mocha).
Skip mid-morning 8oz hot chocolate.
Eat lunch kinda early (yogurt, granola bar) with hopes of "soaking up" fluid I'd taken in already.
Notice the skies are even darker now.
Also notice the soaking up fluid idea doesn't feel all that successful.
Sit at desk while sipping 18oz of fruit juice and eat second granola bar during actual lunch time.
Process invoices and ... is that rain on the window behind me?
Continue to process payments and try not to notice water STREAMING down the windows.
Sort through email to take mind off of virtual monsoon outside.
Glance disbelievingly at clock on wall, which says it is just 2:10pm.
Order office supplies, including batteries for obviously malfunctioning clock.
Seriously - it's like someone is standing on the roof with a hose or something.
Co-workers in office finally ask why I'm so edgy, so I share my plight with them.
Laughter ensues.
Note that laughter doesn't help with bladder pressure.
Manage to keep busy for rest of the day and ignore giant ark floating by my 3rd story window.
Walk to vehicle while dodging raindrops.
Drive home ... with windshield wipers on high and radio on loud.
Pull up into driveway and exhale for a moment.
Casually walk into home and greet Awesome Boyfriend.
Note Awesome Boyfriend has kindly cleared the path of any pets or obstacles between me and the facilities.
Take my time and act casual about NOT dashing into restroom.
Give up the "brave" act and use facilities while saying a small prayer of thanks for indoor plumbing.
*****************
When I went to work the next day, I was treated like a superhero ... "Bionic Bladder Babe" or something like that. I work in an office of all women and the consensus was that I was either brave for trying to do what I'd done (or, really, NOT done) or stupid ... even 'tho I'd succeeded at NOT doing what I had set out to NOT do.
*****************
So that's the story behind the urinalysis I was asked to do. The test results from it showed nothing unusual whatsoever, so we were able to rule out liver malfunction and Wilson's Disease. My doctor and I were going to continue to work under the umbrella diagnosis of Parkinson's Disease and the Carbidopa/Levodopa route would be followed for the time being. And, as I had noticed by this time, like it or not, the tremor was in fact responding to the medication.
Basically the only thing left standing between me and Parkinson's was the slim chance of something showing on the MRI. As twisted and stupid as this will read, I secretly started to hope that the MRI would show a growth or tumor of some sort. My reasoning was that at least a physical ... something ... could be operated on or removed or treated.
You see ... not only is there no test to conclusively diagnose Parkinson's, there's no treatment method to counteract or halt or reverse its progress. And "progress" it does.
Today's "adventure" is gonna go straight down the toilet.
*****************
It was recommended by my neurologist that blood work, a urinalysis, and an MRI be conducted to check for *any* other factors that could be behind my arm tremor.
You see - as of today anyway - one cannot get an eye scan, brain scan, have a blood count done or do ANY other test to confirm a diagnosis of Parkinson's Disease. (It's one of maaaaaaaaaaany medical things I've learned as of late.) One can do those tests and confirm other things, but there is no marker known where a conclusive diagnosis of Parkinson's can be made. (This is kinda amazing, especially when one considers that Dr. James Parkinson first noted "Shaking Palsy" in 1817.)
The blood work was easy. Four vials were taken by a Phlebotomist who, judging from her skill, had been practicing for decades. I've only had an issue with needles once in my life, and (honestly) it was my doctor's fault. (You should NEVER show a six year old the size of the needle used for a tetanus shot.)
So after the vials of blood were labeled and corked, I was given instructions regarding the procedures required for a proper urinalysis to be conducted. When the collection was done, the sample would be tested for high amounts of copper, which could indicate abnormal liver function and/or Wilson's Disease (which can cause damage to the nervous system).
*****************
Warning: I will do my best to describe this tastefully and accurately. I may not succeed in the former.
*****************
I was told that my collection was to be a 24-hour sample, but not to include my first morning visit to the facilities, because really that's from the night before, I guess. I was given a container which I'd use to hold the collection and a funnel-like device because ... because ... well because women and men are different, that's why.
None of that was what I envisioned to be my biggest problem. No ... my biggest problem was going to be how one collects their - fluid output - for the day when one is at work. I thought about it and decided the best course of action would be to not act at all, meaning no at-work bio-breaks whatsoever.
*****************
That day for me went like this:
Wake up.
Get ready for work.
Feed pets.
Use facilities, no collection required.
Kiss Awesome Boyfriend before heading out the door.
Notice the skies seem kinda dark and cloudy.
Stop at coffee shop for usual order (20oz of Mocha).
Skip mid-morning 8oz hot chocolate.
Eat lunch kinda early (yogurt, granola bar) with hopes of "soaking up" fluid I'd taken in already.
Notice the skies are even darker now.
Also notice the soaking up fluid idea doesn't feel all that successful.
Sit at desk while sipping 18oz of fruit juice and eat second granola bar during actual lunch time.
Process invoices and ... is that rain on the window behind me?
Continue to process payments and try not to notice water STREAMING down the windows.
Sort through email to take mind off of virtual monsoon outside.
Glance disbelievingly at clock on wall, which says it is just 2:10pm.
Order office supplies, including batteries for obviously malfunctioning clock.
Seriously - it's like someone is standing on the roof with a hose or something.
Co-workers in office finally ask why I'm so edgy, so I share my plight with them.
Laughter ensues.
Note that laughter doesn't help with bladder pressure.
Manage to keep busy for rest of the day and ignore giant ark floating by my 3rd story window.
Walk to vehicle while dodging raindrops.
Drive home ... with windshield wipers on high and radio on loud.
Pull up into driveway and exhale for a moment.
Casually walk into home and greet Awesome Boyfriend.
Note Awesome Boyfriend has kindly cleared the path of any pets or obstacles between me and the facilities.
Take my time and act casual about NOT dashing into restroom.
Give up the "brave" act and use facilities while saying a small prayer of thanks for indoor plumbing.
*****************
When I went to work the next day, I was treated like a superhero ... "Bionic Bladder Babe" or something like that. I work in an office of all women and the consensus was that I was either brave for trying to do what I'd done (or, really, NOT done) or stupid ... even 'tho I'd succeeded at NOT doing what I had set out to NOT do.
*****************
So that's the story behind the urinalysis I was asked to do. The test results from it showed nothing unusual whatsoever, so we were able to rule out liver malfunction and Wilson's Disease. My doctor and I were going to continue to work under the umbrella diagnosis of Parkinson's Disease and the Carbidopa/Levodopa route would be followed for the time being. And, as I had noticed by this time, like it or not, the tremor was in fact responding to the medication.
Basically the only thing left standing between me and Parkinson's was the slim chance of something showing on the MRI. As twisted and stupid as this will read, I secretly started to hope that the MRI would show a growth or tumor of some sort. My reasoning was that at least a physical ... something ... could be operated on or removed or treated.
You see ... not only is there no test to conclusively diagnose Parkinson's, there's no treatment method to counteract or halt or reverse its progress. And "progress" it does.
Friday, November 11, 2011
The November Chronicles
When she returned, my Neurologist asked me for the name of the place where I worked. I had thought we were done with the tests but played along and told her. (It's one of many noted places of medically-focused learning on the East Coast., and the department I'm in specifically works in the field of brain research.)
“So you work with doctors who study brain disorders and what not?” she asked, while making total eye contact. The air in the room suddenly felt more serious. I knew this air. I knew this moment.
“Right”, I responded. “We study and test for advanced age-related neurological issues, developmental disorders in children, behavioral and biological brain development” came from my mouth while my OWN brain was going through the hundreds of illnesses and sicknesses and treatable diseases I’d been reading on various emails, wondering which one she’d be assigning to my arm … and, apparently, to my foot.
“I take it”, she continued, “that you’ve done a fair amount of research then – especially after your appointment with your general practitioner.” “Ohhhh yeah”, I laughed. “Until he said it, I’d never even heard of ‘benign essential tremor’ and to think that literally millions of people have it was strangely comforting.” I lightened up. This felt better. She had news to deliver but it ... it felt alright somehow.
“Uh huh” she said. “The thing is that sometimes a dominant symptom is diagnosed, rather than finding the real primary cause of that symptom. It happens pretty frequently actually. Like – when you were diagnosed with migraines, for instance. Sure you had headaches but it was after you walked us through the frequency and the type of pain and location … that’s when we were able to say that your headaches were, in fact, migraines. They are headaches that are also migraines. Someone can have just a headache and not have it be a migraine … but you can’t have a migraine without it also being a headache.”
I nodded, took a breath and continued to listen.
“You DO have benign essential tremor, just as your GP stated. And that, combined with your difficulty in writing, slowly traveling tremor, description of how the interior of your arm feels when it shakes, lack of mobility in your right wrist, your walking gait … I’m nearly certain you have Parkinson’s disease.”
I exhaled slowly. “Yeaaaaah, I’d researched that, too.” Immediately my eyes welled up and my throat tightened.
She handed me a tissue and did her best to keep me focused. “We’re gonna take some blood today and I want you to sign up for a urinalysis. We’ll check for high concentrates of copper, which can cause tremors – I wanna rule that possibility out. Also, as soon as possible I want you to have an MRI to rule out any tumour or stroke-type events. Continue to take your Inderal – no sense in you getting migraines – but I’m prescribing Carbidopa/Levodopa that, over the next 6 weeks, I want you to slowly increase until you’re taking 3 tablets a day. And I want to see you again before the end of October.”
And I’m sure she said other things, too … but my brain had left the building and was floating away.
*****************
I am forty three years old and I have Parkinson's Disease.
No family history. Not even EXTENDED family.
How to tell The Awesome Boyfriend.
My God - I’m only forty three years old.
How to tell co-workers.
Seriously ... forty three. FORTY THREE.
Being one more damn thing for The Awesome Boyfriend to worry about. One more bother. One more burden.
How to face that look that one gets when others know bad news about them.
How to tell family back on the West Coast.
Forty fucking three years old.
*****************
While in the parking lot, I called The Awesome Boyfriend and apologized for it … for the diagnosis. After the numbness wore off a little, he asked “are you going back to work or can I meet you at home?” “Hell yes I’m going to work” I blurted out. “I’m NOT sitting at home and wallowing.”
*****************
A lot has happened since that day. I finished the blood work. I did the urinalysis (more on that later). I did the MRI (more about that later, too). I told my family. I told my coworkers. And, because I work where I work, I was given the contact info of a Neurologist who specializes in Parkinson’s research and was able to get his opinion about the diagnosis, treatment options, and a LOT of additional information.
But the real bummer is that the Carbidopa/Levodopa really … honestly … truthfully … seemed to make a difference, even after just a few days of taking it. Which sucked. A lot. A whole lot. Because since that worked, it pretty much confirmed that she'd found the right primary cause of my stupid little arm shake, which was no longer funny at all.
*****************
I am forty three years old and I have Parkinson's Disease. It probably won't kill me and I probably won't ever see a cure. The best I can hope for is symptom management. There will come a time when I will look back in longing when I had "just" the arm tremor. This - today - is the best I will ever be. Eventual decline is as inevitable as the leaves falling in November - it's both strangely beautiful and sad.
I’ll write about this as things change – which may be often. Read about it or don’t - we all have our own sack of crap to handle and mine is no heavier than yours.
Just, for my own sake, don't treat me differently if at all possible. I'm not defined by this any more than I'm defined by my job or my height or my shoe size. Yes, I’m forty three years old and yes, I have Parkinson’s Disease … but I am – I will always be – more than that.
OK? Got it?
“So you work with doctors who study brain disorders and what not?” she asked, while making total eye contact. The air in the room suddenly felt more serious. I knew this air. I knew this moment.
“Right”, I responded. “We study and test for advanced age-related neurological issues, developmental disorders in children, behavioral and biological brain development” came from my mouth while my OWN brain was going through the hundreds of illnesses and sicknesses and treatable diseases I’d been reading on various emails, wondering which one she’d be assigning to my arm … and, apparently, to my foot.
“I take it”, she continued, “that you’ve done a fair amount of research then – especially after your appointment with your general practitioner.” “Ohhhh yeah”, I laughed. “Until he said it, I’d never even heard of ‘benign essential tremor’ and to think that literally millions of people have it was strangely comforting.” I lightened up. This felt better. She had news to deliver but it ... it felt alright somehow.
“Uh huh” she said. “The thing is that sometimes a dominant symptom is diagnosed, rather than finding the real primary cause of that symptom. It happens pretty frequently actually. Like – when you were diagnosed with migraines, for instance. Sure you had headaches but it was after you walked us through the frequency and the type of pain and location … that’s when we were able to say that your headaches were, in fact, migraines. They are headaches that are also migraines. Someone can have just a headache and not have it be a migraine … but you can’t have a migraine without it also being a headache.”
I nodded, took a breath and continued to listen.
“You DO have benign essential tremor, just as your GP stated. And that, combined with your difficulty in writing, slowly traveling tremor, description of how the interior of your arm feels when it shakes, lack of mobility in your right wrist, your walking gait … I’m nearly certain you have Parkinson’s disease.”
I exhaled slowly. “Yeaaaaah, I’d researched that, too.” Immediately my eyes welled up and my throat tightened.
She handed me a tissue and did her best to keep me focused. “We’re gonna take some blood today and I want you to sign up for a urinalysis. We’ll check for high concentrates of copper, which can cause tremors – I wanna rule that possibility out. Also, as soon as possible I want you to have an MRI to rule out any tumour or stroke-type events. Continue to take your Inderal – no sense in you getting migraines – but I’m prescribing Carbidopa/Levodopa that, over the next 6 weeks, I want you to slowly increase until you’re taking 3 tablets a day. And I want to see you again before the end of October.”
And I’m sure she said other things, too … but my brain had left the building and was floating away.
*****************
I am forty three years old and I have Parkinson's Disease.
No family history. Not even EXTENDED family.
How to tell The Awesome Boyfriend.
My God - I’m only forty three years old.
How to tell co-workers.
Seriously ... forty three. FORTY THREE.
Being one more damn thing for The Awesome Boyfriend to worry about. One more bother. One more burden.
How to face that look that one gets when others know bad news about them.
How to tell family back on the West Coast.
Forty fucking three years old.
*****************
While in the parking lot, I called The Awesome Boyfriend and apologized for it … for the diagnosis. After the numbness wore off a little, he asked “are you going back to work or can I meet you at home?” “Hell yes I’m going to work” I blurted out. “I’m NOT sitting at home and wallowing.”
*****************
A lot has happened since that day. I finished the blood work. I did the urinalysis (more on that later). I did the MRI (more about that later, too). I told my family. I told my coworkers. And, because I work where I work, I was given the contact info of a Neurologist who specializes in Parkinson’s research and was able to get his opinion about the diagnosis, treatment options, and a LOT of additional information.
But the real bummer is that the Carbidopa/Levodopa really … honestly … truthfully … seemed to make a difference, even after just a few days of taking it. Which sucked. A lot. A whole lot. Because since that worked, it pretty much confirmed that she'd found the right primary cause of my stupid little arm shake, which was no longer funny at all.
*****************
I am forty three years old and I have Parkinson's Disease. It probably won't kill me and I probably won't ever see a cure. The best I can hope for is symptom management. There will come a time when I will look back in longing when I had "just" the arm tremor. This - today - is the best I will ever be. Eventual decline is as inevitable as the leaves falling in November - it's both strangely beautiful and sad.
I’ll write about this as things change – which may be often. Read about it or don’t - we all have our own sack of crap to handle and mine is no heavier than yours.
Just, for my own sake, don't treat me differently if at all possible. I'm not defined by this any more than I'm defined by my job or my height or my shoe size. Yes, I’m forty three years old and yes, I have Parkinson’s Disease … but I am – I will always be – more than that.
OK? Got it?
Thursday, November 10, 2011
The November Chronicles
If you've ever spent time with any medical specialist, I think it's safe to say that they're generally NOT known for their warm, fuzzy bedside manners. My Neurologist was 25 minutes behind schedule ('tho I was her first appointment of the day), and breezed in as 'tho she was a few minutes early. She started firing questions at me faster than most repeating guns have the capability of - family medical history, self medical history, worries, age, height, walk this line, touch these fingers, move this arm, now move THIS arm, move these fingers again, draw these circles, touch your nose.
And yes, this was BEFORE I'd had my mocha. It was a hell of a way to start a day.
Between each "test", she'd type furiously into her computer while saying "ok got it". I must've heard "ok got it" about 45 times in 15 minutes. The $1,000,000 question I still had was: Ok, what have I got?
*****************
It was when she had me walk down the hallway for the third time that it dawned on me. While she had read my medical history, she was testing me for things the GP had already cleared me of. I appreciated her thoroughness, even though it made me somewhat nervous. But, overall, I figured it was her time to waste. I guessed she would just cross a few things off the list and we’d go from there.
When I came back to stop in front of her, she said “now we both know that’s NOT how you typically swing your arms. I know you’re thinking about it and trying to walk as ‘normal’ as possible but I gotta really see what you walk like so let’s do it again”.
Properly scolded, I did a few more laps. Then she had me sit back down and tested my reflexes and my wrist flexibility and pricked my toes with pins. When she was writing down more responses and uttering more “ok got its”, she stopped mid-keyboard stroke and said “tell me why you’re holding your right hand down.” She was being blunt and honest, so I did the same. “Because it’s shaking and I’m embarrassed.” “Ok fair enough” she responded. “So go ahead and just let it shake and why don’t you tell me how long your right foot has had a tremor.”
I looked down … disbelievingly … and, as if it knew it was in trouble, my right foot was completely still. “Oh”, I said, eager to nip this line of thought in the bud. “Oh – haha – no. That’s just because my arm shaking when it’s resting on my leg is gonna make my leg shake. Ha! That’s all.” and I immediately moved my arm off my leg, as if to show how in control of my limbs I was.
Instead of agreement, I received another “ok got it”. This phrase was becoming less and less satisfying with each time I heard it. I was told to put my shoes back on while she visited her office for a few minutes.
I put on my socks and shoes while glaring at my right foot in disappointment … the problem child.
*****************
And yes, this was BEFORE I'd had my mocha. It was a hell of a way to start a day.
Between each "test", she'd type furiously into her computer while saying "ok got it". I must've heard "ok got it" about 45 times in 15 minutes. The $1,000,000 question I still had was: Ok, what have I got?
*****************
It was when she had me walk down the hallway for the third time that it dawned on me. While she had read my medical history, she was testing me for things the GP had already cleared me of. I appreciated her thoroughness, even though it made me somewhat nervous. But, overall, I figured it was her time to waste. I guessed she would just cross a few things off the list and we’d go from there.
When I came back to stop in front of her, she said “now we both know that’s NOT how you typically swing your arms. I know you’re thinking about it and trying to walk as ‘normal’ as possible but I gotta really see what you walk like so let’s do it again”.
Properly scolded, I did a few more laps. Then she had me sit back down and tested my reflexes and my wrist flexibility and pricked my toes with pins. When she was writing down more responses and uttering more “ok got its”, she stopped mid-keyboard stroke and said “tell me why you’re holding your right hand down.” She was being blunt and honest, so I did the same. “Because it’s shaking and I’m embarrassed.” “Ok fair enough” she responded. “So go ahead and just let it shake and why don’t you tell me how long your right foot has had a tremor.”
I looked down … disbelievingly … and, as if it knew it was in trouble, my right foot was completely still. “Oh”, I said, eager to nip this line of thought in the bud. “Oh – haha – no. That’s just because my arm shaking when it’s resting on my leg is gonna make my leg shake. Ha! That’s all.” and I immediately moved my arm off my leg, as if to show how in control of my limbs I was.
Instead of agreement, I received another “ok got it”. This phrase was becoming less and less satisfying with each time I heard it. I was told to put my shoes back on while she visited her office for a few minutes.
I put on my socks and shoes while glaring at my right foot in disappointment … the problem child.
*****************
Tuesday, November 8, 2011
The November Chronicles
After a month on the Inderal, I honestly tried to talk myself into believing I was shaking less. Really, I tried. Ask my friend Kathleen - hell, I was practically bragging about how much better I was doing when we had dinner in Philadelphia.
The truth of the matter was that yes, I was experiencing FAR fewer migraines, which was a blessing in and of itself, of course. But this time, since I was taking the Inderal for the express purpose of controlling the tremor ... well ... maybe I was expecting a little too much. Again, we can talk ourselves into pretty much anything when we're observing our own patterns. (Remember the ice cubes that you're not supposed to think about?) Was I really shaking less or was I just really wanting to believe I was shaking less?
*****************
I wrote to my GP and said "Hey doc - can we up the size of the dose to see if that helps?" and he agreed to do that - and also made an appointment on my behalf to go get a second opinion from a Neurologist. Which I was totally alright with. I wouldn't expect a GP to be 100% comfortable in diagnosing a neurological disorder after all. And he had already let me off the hook for my biggest worries so I had nothing to lose! Hell - bring on the Neurologist.
The truth of the matter was that yes, I was experiencing FAR fewer migraines, which was a blessing in and of itself, of course. But this time, since I was taking the Inderal for the express purpose of controlling the tremor ... well ... maybe I was expecting a little too much. Again, we can talk ourselves into pretty much anything when we're observing our own patterns. (Remember the ice cubes that you're not supposed to think about?) Was I really shaking less or was I just really wanting to believe I was shaking less?
*****************
I wrote to my GP and said "Hey doc - can we up the size of the dose to see if that helps?" and he agreed to do that - and also made an appointment on my behalf to go get a second opinion from a Neurologist. Which I was totally alright with. I wouldn't expect a GP to be 100% comfortable in diagnosing a neurological disorder after all. And he had already let me off the hook for my biggest worries so I had nothing to lose! Hell - bring on the Neurologist.
Monday, November 7, 2011
The November Chronicles
The doctor was already writing me a prescription for Inderal as the rest of the questions and answers came fast …
“How did it start? Did I trigger it during my ‘Katrina’ days?” I asked, as though it was one word.
“Too hard to figure out, since you were taking Inderal back then. You can't really make this happen or injure yourself to have this occur, ‘tho ... just like migraines, you either get it or you don't.”
“Does it ever just go away?”
“The short answer is 'no, it doesn’t'. (I liked that he said that. I like honest doctors and hearing one admit there wasn't an easy answer available was reassuring to me, even if I didn't like the response itself.) "There's no treatment or cure that will eliminate it altogether so- un-medicated - you'll forever have bad handwriting, and you’ll shake. Medicated, it can be reduced to be nearly unnoticed by those around you, 'tho you'll still feel it. More than 8 million people have ‘ET’, but less than 60% ever see a doctor about it because they’re worried about what it COULD be.” (I liked that he said that, too. I could relate to that message VERY well.)
Then he added ...
“Do you drink?”
“Typically not this early in the day”, I laughed.
“Well, start having a beer or mixed drink with dinner. It will probably reduce your shaking when the medication is beginning to wear off near bedtime. It'll buy you enough time so that you can fall asleep.”
(This was something The Awesome Boyfriend and I had discussed. When we’d do our “marathon meals”, there was usually alcohol at some point. But we were normally so focused over how great the food is that we’d forget to sneak glances at my arm.)
*****************
When I finally arrived at my desk at work, I took to the Internet. “Essential Tremor” may not be the most popular diagnosis, but there is a LOT of information about it. Of course I wanted to call The Awesome Boyfriend with what I was digesting as good news, but I decided to wait for a face-to-face conversation. I couldn't imagine starting a conversation with "so I went to the doctor today" and not being there in the flesh to show him I was fine.
I was instructed to email my doctor in a month to report on how things were going. He told me that if I didn’t feel I was shaking less, we could do tests to absolutely eliminate MS and Parkinson’s, just to ease my (and mostly The Awesome Boyfriend’s) mind but my new doctor - the one who just told me that I'd always shake and to start drinking more - really seemed to believe what we were looking at was ET.
Or, as I will call it in my “always being positive” spin, "The Hippy Hippy Shakes".
Because if it sounds funny, it really can’t be all that serious.
“How did it start? Did I trigger it during my ‘Katrina’ days?” I asked, as though it was one word.
“Too hard to figure out, since you were taking Inderal back then. You can't really make this happen or injure yourself to have this occur, ‘tho ... just like migraines, you either get it or you don't.”
“Does it ever just go away?”
“The short answer is 'no, it doesn’t'. (I liked that he said that. I like honest doctors and hearing one admit there wasn't an easy answer available was reassuring to me, even if I didn't like the response itself.) "There's no treatment or cure that will eliminate it altogether so- un-medicated - you'll forever have bad handwriting, and you’ll shake. Medicated, it can be reduced to be nearly unnoticed by those around you, 'tho you'll still feel it. More than 8 million people have ‘ET’, but less than 60% ever see a doctor about it because they’re worried about what it COULD be.” (I liked that he said that, too. I could relate to that message VERY well.)
Then he added ...
“Do you drink?”
“Typically not this early in the day”, I laughed.
“Well, start having a beer or mixed drink with dinner. It will probably reduce your shaking when the medication is beginning to wear off near bedtime. It'll buy you enough time so that you can fall asleep.”
(This was something The Awesome Boyfriend and I had discussed. When we’d do our “marathon meals”, there was usually alcohol at some point. But we were normally so focused over how great the food is that we’d forget to sneak glances at my arm.)
*****************
When I finally arrived at my desk at work, I took to the Internet. “Essential Tremor” may not be the most popular diagnosis, but there is a LOT of information about it. Of course I wanted to call The Awesome Boyfriend with what I was digesting as good news, but I decided to wait for a face-to-face conversation. I couldn't imagine starting a conversation with "so I went to the doctor today" and not being there in the flesh to show him I was fine.
I was instructed to email my doctor in a month to report on how things were going. He told me that if I didn’t feel I was shaking less, we could do tests to absolutely eliminate MS and Parkinson’s, just to ease my (and mostly The Awesome Boyfriend’s) mind but my new doctor - the one who just told me that I'd always shake and to start drinking more - really seemed to believe what we were looking at was ET.
Or, as I will call it in my “always being positive” spin, "The Hippy Hippy Shakes".
Because if it sounds funny, it really can’t be all that serious.
Friday, November 4, 2011
The November Chronicles
I awoke with the alarm and while I went about getting ready for my day, I made myself be aware of two things: (1) Try to appear normal so as to not alert The Awesome Boyfriend that I wasn't going to work but was heading to a doctor's appointment and (2) try to occasionally notice what I was doing - or not doing - when my arm began to shake.
I took a shower, fed the cats, got dressed, gathered my work items, kissed The Awesome Boyfriend farewell, and left home and not once ... NOT ONE STUPID TIME ... did my arm shake. I drove to my coffee shop and sat at what used to be "my" table and read the morning paper. No shake. I drove to the hospital and parked. No shake. Maybe I had cured it by just making the appointment.
*****************
So it was that my wounded ego, banged-up chin, no-longer shaking arm and I registered for our 8:30am appointment. As I sat in the waiting room, I glanced at the stack of magazines in the corner. As God as my witness, the smiling, eternally youthful face of Michael J Fox underneath the “Good Housekeeping” header stared back at me.
“Oh just fuck you”, I muttered to the room.
*****************
My doctor walked in and shook my hand with our introductions. “Good grip”, he said. “Damn thing hasn’t shaken once today”, I responded. We did the standard question and answer routine (smoke? No. Exercise? No. Sleep? Pretty well.) and then we did a few basic strength tests - push/pull motions, holding my arms out in front of me, rotating my shoulders and neck, etc. Since there was no numbness, lack of movement, or stiffness, he thought a pinched nerve was unlikely.
I wasn't happy about this. A pinched nerve was what I wanted to hear. A pinched nerve eventually will heal. Ruling it out left the scarier stuff on the table.
He moved into my medical history and asked about my past prescriptions, which was when I told him I used to take Maxalt for migraine pain and Inderal for daily migraine management but that my prescriptions ran out about the time this started to get worse. He nodded and set down his clipboard.
It seems Inderal was created for - catch this - "chest pain, heart attack prevention or treatment, hypertension, tremors, heart rhythm disorders and other circulatory concerns". As it was being prescribed to recent stroke victims, more and more patients who were also migraine sufferers reported back that the frequency of their migraine attacks went wayyyyyy down. So the manufacturer ran tests and - lo and behold - they'd accidentally created a migraine suppressant. Here I was being given this to prevent my migraines because this stuff had a good side effect ……. and it's likely I'd been "shaking" the whole time. I'd just happened to be taking the right pill to suppress the tremor.
As he was telling me this, he glanced to my arm – which was shaking. “That”, he said, “doesn’t look like a Parkinson’s shake … not even close. A Parkinson’s shake is more of a finger-pill rolling kind of thing … that is an ‘Essential Tremor’ shake.”
*****************
After years … YEARS … I had a name – “Essential Tremor” - or, as I heard it in my head - “Not Gonna Kill Me”.
I took a shower, fed the cats, got dressed, gathered my work items, kissed The Awesome Boyfriend farewell, and left home and not once ... NOT ONE STUPID TIME ... did my arm shake. I drove to my coffee shop and sat at what used to be "my" table and read the morning paper. No shake. I drove to the hospital and parked. No shake. Maybe I had cured it by just making the appointment.
*****************
So it was that my wounded ego, banged-up chin, no-longer shaking arm and I registered for our 8:30am appointment. As I sat in the waiting room, I glanced at the stack of magazines in the corner. As God as my witness, the smiling, eternally youthful face of Michael J Fox underneath the “Good Housekeeping” header stared back at me.
“Oh just fuck you”, I muttered to the room.
*****************
My doctor walked in and shook my hand with our introductions. “Good grip”, he said. “Damn thing hasn’t shaken once today”, I responded. We did the standard question and answer routine (smoke? No. Exercise? No. Sleep? Pretty well.) and then we did a few basic strength tests - push/pull motions, holding my arms out in front of me, rotating my shoulders and neck, etc. Since there was no numbness, lack of movement, or stiffness, he thought a pinched nerve was unlikely.
I wasn't happy about this. A pinched nerve was what I wanted to hear. A pinched nerve eventually will heal. Ruling it out left the scarier stuff on the table.
He moved into my medical history and asked about my past prescriptions, which was when I told him I used to take Maxalt for migraine pain and Inderal for daily migraine management but that my prescriptions ran out about the time this started to get worse. He nodded and set down his clipboard.
It seems Inderal was created for - catch this - "chest pain, heart attack prevention or treatment, hypertension, tremors, heart rhythm disorders and other circulatory concerns". As it was being prescribed to recent stroke victims, more and more patients who were also migraine sufferers reported back that the frequency of their migraine attacks went wayyyyyy down. So the manufacturer ran tests and - lo and behold - they'd accidentally created a migraine suppressant. Here I was being given this to prevent my migraines because this stuff had a good side effect ……. and it's likely I'd been "shaking" the whole time. I'd just happened to be taking the right pill to suppress the tremor.
As he was telling me this, he glanced to my arm – which was shaking. “That”, he said, “doesn’t look like a Parkinson’s shake … not even close. A Parkinson’s shake is more of a finger-pill rolling kind of thing … that is an ‘Essential Tremor’ shake.”
*****************
After years … YEARS … I had a name – “Essential Tremor” - or, as I heard it in my head - “Not Gonna Kill Me”.
Thursday, November 3, 2011
The November Chronicles
One Saturday, we drove to our favorite fruit market to get the last of our jams done. With an entire bushel and a half of freestone peaches and 15 quarts of fresh strawberries in the back of the truck, we'd stopped at a hardware store for a last-moment jar purchase. We were nearly sure we had enough jars for the jam, but this particular location always had the same style jar we use and a few more wouldn’t hurt.
It was a warm summer day and I was glad to be wearing my flip-flops and sunglasses as I looped the bags with jars around my left arm and slung my purse over my right. I strode out the door while The Awesome Boyfriend was somewhat ahead of me – readying to open the truck door to stash the last of our required supplies.
My right foot dragged? Or caught the edge of the concrete landing outside the doors? Or scuffed on *something* and I went down. The Awesome Boyfriend turned as he heard me but by the time he started back to help, I was already flat on the ground. My legs and knees were slightly bent to the left, my arms were on either side of my body (not ahead of me to break my fall), and my purse and the jars were, luckily, far away from my face. My chin was flat against the ground as I said my first word … “ow”. The second words were “oh crap the jars.” (No one can tell me I’m not focused on what’s important!)
My left knee got most of my weight so it bruised up nicely and my chin was, of course, quite blackened (and stayed that way for more than a week). My pride and bravado was what took the biggest hit and I know what The Awesome Boyfriend and I were both thinking as we walked slowly to the truck. Sure, I’ve ALWAYS been klutzy but … the connection was too easy to make. I didn’t start crying until my passenger door was closed … and it was the first time I think I shared exactly how scared I really was.
*****************
And you would THINK that would be enough of a wake-up call, right? But when it really struck me was during a conversation I had with a dear friend I used to work with. He was helping me arrange for a birthday gift for my mom from a West-Coast artist and called on a Wednesday evening to say everything was under control and the piece (a painting) was nearly done. And then he said “hey – remember when we had lunch while you two were out here? Please don’t be upset … but I noticed something and it scared me and …” As it turned out, I wasn't as good at hiding my "personal earthquakes" as I thought I'd been.
His timing was incredible - my first appointment in meeting my new GP was the next morning.
It was a warm summer day and I was glad to be wearing my flip-flops and sunglasses as I looped the bags with jars around my left arm and slung my purse over my right. I strode out the door while The Awesome Boyfriend was somewhat ahead of me – readying to open the truck door to stash the last of our required supplies.
My right foot dragged? Or caught the edge of the concrete landing outside the doors? Or scuffed on *something* and I went down. The Awesome Boyfriend turned as he heard me but by the time he started back to help, I was already flat on the ground. My legs and knees were slightly bent to the left, my arms were on either side of my body (not ahead of me to break my fall), and my purse and the jars were, luckily, far away from my face. My chin was flat against the ground as I said my first word … “ow”. The second words were “oh crap the jars.” (No one can tell me I’m not focused on what’s important!)
My left knee got most of my weight so it bruised up nicely and my chin was, of course, quite blackened (and stayed that way for more than a week). My pride and bravado was what took the biggest hit and I know what The Awesome Boyfriend and I were both thinking as we walked slowly to the truck. Sure, I’ve ALWAYS been klutzy but … the connection was too easy to make. I didn’t start crying until my passenger door was closed … and it was the first time I think I shared exactly how scared I really was.
*****************
And you would THINK that would be enough of a wake-up call, right? But when it really struck me was during a conversation I had with a dear friend I used to work with. He was helping me arrange for a birthday gift for my mom from a West-Coast artist and called on a Wednesday evening to say everything was under control and the piece (a painting) was nearly done. And then he said “hey – remember when we had lunch while you two were out here? Please don’t be upset … but I noticed something and it scared me and …” As it turned out, I wasn't as good at hiding my "personal earthquakes" as I thought I'd been.
His timing was incredible - my first appointment in meeting my new GP was the next morning.
Wednesday, November 2, 2011
The November Chronicles
I've had my arm shake for ... well ... ... let's just say for far, farrrrr too long. If I were being very honest with myself, it was very slightly shaking upon occasion when I was doing my Katrina recovery, but I always figured I was just working new muscles and it was easy to shrug off.
It's funny what we as humans will put off - either because it isn't "big enough" to bother with making an appointment, or because we're not sure of how to describe it if we WERE to make an appointment, or - at times - because if we make the appointment, we're admitting that there is something amiss.
And I've had bigger fish to fry - medically, physically, and emotionally. Adding to the stress was my extended joblessness, which brought about my feeling as though I was yet one more burden for The Awesome Boyfriend to care for, and the near constant interview process where I honestly stopped believing I had enough to offer an employer.
Not wanting to add to anyone’s load, I kept most of my concerns and feelings of not measuring up to myself – which I readily admit added to my self-induced stress level. Some days it took a WHOLE lot of energy to stay positive … and, while to the casual observer it may have appeared that I wasn’t doing anything to warrant being tired, there were certainly days where I was exhausted and grateful to finally just go to bed.
*****************
For awhile, when my arm would shake, I could shove it down to the right side of my body and kinda sit on my hand. This would enable me to ignore it and – even more important – it would prevent it from being noticed by anyone else, too. I found LOTS of ways to ensure my shaking would be ignored – writing personal checks alone at the kitchen table and allowing myself about 8 minutes per check, typing notes and printing them on paper to insert into cards sent to friends, saying I was cold or tired, holding something in my hand (like a pencil) and purposely “bouncing” it … oh, I was clever.
Eventually though The Awesome Boyfriend started asking me questions – “how is your balance?" and "do you walk with a strange gait?" or "do you swing your arms evenly?” I’m not a mental midget … I knew what he was asking. Those are Parkinson’s indicators … he was testing me for Parkinson’s. As a Research Scientist with many years of medical school swirling about in his head, it’s his very nature to ask for reasons behind certain behaviors – but there were days when I made it quite clear I was not his research project. I knew his concern came from a good place in his heart but … denial, she is a seriously righteous bitch.
As for noticing these things myself, I can only say this: Clear your mind. Take a deep breath. Don't think about ice cubes. So - quick - the image in your head right now is of an ice cube right? Of course it is! You can't test yourself to see if you swing your arms normally because the minute you think "I need to walk from this parking space to the store. Let's see how my arms swing", I promise you the test is ruined. You have to have someone else observe you walking ... but you can't KNOW they're observing you. Our brains are kinda nutso that way.
*****************
Finally I found a job, so I began the task of having my (considerably large) medical records transferred. This took a lot of forms and a lot of writing by hand – something I was embarrassed to admit was becoming more difficult with each passing month. It was a dance, really ... hold the pen with my writing hand (my right) but guide the movements with my left. When the shaking got too bad, stop and walk away. Repeat as often as needed until task was completed.
I decided that when I was finally officially transferred to my new health care provider, I’d make an appointment to be seen about my own “personal earthquakes”. (I’d taken to calling them this because it sounded funny, and I figured that something that sounded funny couldn’t be all that serious.) I wasn't wrong when I figured that process would take months. So more time rolled by ... but since I didn't know where to start with this problem, that was alright with me.
On the job, I told myself I couldn’t ask for medical time so early in a new working environment. And then the job got super busy so I couldn’t do it then. Next The Awesome Boyfriend and I were traveling to the mid-West, so I didn’t wanna wreck that trip with stupid medical stuff. Whoops – now we were headed to the West Coast to visit family and friends ... yeeeeeah, I had all kinds of reasons why I couldn’t make that appointment.
*****************
While we were having lunch with my parents on my birthday, my mother said “so are you going through some kind of withdrawal here or what?” (My mom and I … we’re a lot alike.) I explained that I was gonna get it looked at blah blah blah and waived it off, as I’d grown accustomed to doing. As we left for home at the end of our visit, my mom looked me straight in the eye and said “do something about that.”
I’d been given my orders.
So we arrived home and I surveyed our Summer plans … lots of “jam” weekends, trips to favorite restaurants that were just overnight treks, quiet times on the job … I guessed it was time. In the middle of July, I checked out available appointments … and I picked the furthest one out I could find. (I’m not stubborn – I’m Irish.) So at least now, when asked “hey – what’s with your arm?”, I could honestly reply that I had an appointment to get it looked at.
With the designated time and date looming, I’d already told The Awesome Boyfriend that I wasn’t going to let him know when my appointment was – he was already concerned, there was no reason to have him extra anxious on a specific date for no real reason. We started with our jams and our reservations and enjoyed the warm, Summer days.
It's funny what we as humans will put off - either because it isn't "big enough" to bother with making an appointment, or because we're not sure of how to describe it if we WERE to make an appointment, or - at times - because if we make the appointment, we're admitting that there is something amiss.
And I've had bigger fish to fry - medically, physically, and emotionally. Adding to the stress was my extended joblessness, which brought about my feeling as though I was yet one more burden for The Awesome Boyfriend to care for, and the near constant interview process where I honestly stopped believing I had enough to offer an employer.
Not wanting to add to anyone’s load, I kept most of my concerns and feelings of not measuring up to myself – which I readily admit added to my self-induced stress level. Some days it took a WHOLE lot of energy to stay positive … and, while to the casual observer it may have appeared that I wasn’t doing anything to warrant being tired, there were certainly days where I was exhausted and grateful to finally just go to bed.
*****************
For awhile, when my arm would shake, I could shove it down to the right side of my body and kinda sit on my hand. This would enable me to ignore it and – even more important – it would prevent it from being noticed by anyone else, too. I found LOTS of ways to ensure my shaking would be ignored – writing personal checks alone at the kitchen table and allowing myself about 8 minutes per check, typing notes and printing them on paper to insert into cards sent to friends, saying I was cold or tired, holding something in my hand (like a pencil) and purposely “bouncing” it … oh, I was clever.
Eventually though The Awesome Boyfriend started asking me questions – “how is your balance?" and "do you walk with a strange gait?" or "do you swing your arms evenly?” I’m not a mental midget … I knew what he was asking. Those are Parkinson’s indicators … he was testing me for Parkinson’s. As a Research Scientist with many years of medical school swirling about in his head, it’s his very nature to ask for reasons behind certain behaviors – but there were days when I made it quite clear I was not his research project. I knew his concern came from a good place in his heart but … denial, she is a seriously righteous bitch.
As for noticing these things myself, I can only say this: Clear your mind. Take a deep breath. Don't think about ice cubes. So - quick - the image in your head right now is of an ice cube right? Of course it is! You can't test yourself to see if you swing your arms normally because the minute you think "I need to walk from this parking space to the store. Let's see how my arms swing", I promise you the test is ruined. You have to have someone else observe you walking ... but you can't KNOW they're observing you. Our brains are kinda nutso that way.
*****************
Finally I found a job, so I began the task of having my (considerably large) medical records transferred. This took a lot of forms and a lot of writing by hand – something I was embarrassed to admit was becoming more difficult with each passing month. It was a dance, really ... hold the pen with my writing hand (my right) but guide the movements with my left. When the shaking got too bad, stop and walk away. Repeat as often as needed until task was completed.
I decided that when I was finally officially transferred to my new health care provider, I’d make an appointment to be seen about my own “personal earthquakes”. (I’d taken to calling them this because it sounded funny, and I figured that something that sounded funny couldn’t be all that serious.) I wasn't wrong when I figured that process would take months. So more time rolled by ... but since I didn't know where to start with this problem, that was alright with me.
On the job, I told myself I couldn’t ask for medical time so early in a new working environment. And then the job got super busy so I couldn’t do it then. Next The Awesome Boyfriend and I were traveling to the mid-West, so I didn’t wanna wreck that trip with stupid medical stuff. Whoops – now we were headed to the West Coast to visit family and friends ... yeeeeeah, I had all kinds of reasons why I couldn’t make that appointment.
*****************
While we were having lunch with my parents on my birthday, my mother said “so are you going through some kind of withdrawal here or what?” (My mom and I … we’re a lot alike.) I explained that I was gonna get it looked at blah blah blah and waived it off, as I’d grown accustomed to doing. As we left for home at the end of our visit, my mom looked me straight in the eye and said “do something about that.”
I’d been given my orders.
So we arrived home and I surveyed our Summer plans … lots of “jam” weekends, trips to favorite restaurants that were just overnight treks, quiet times on the job … I guessed it was time. In the middle of July, I checked out available appointments … and I picked the furthest one out I could find. (I’m not stubborn – I’m Irish.) So at least now, when asked “hey – what’s with your arm?”, I could honestly reply that I had an appointment to get it looked at.
With the designated time and date looming, I’d already told The Awesome Boyfriend that I wasn’t going to let him know when my appointment was – he was already concerned, there was no reason to have him extra anxious on a specific date for no real reason. We started with our jams and our reservations and enjoyed the warm, Summer days.
Tuesday, November 1, 2011
The November Chronicles
"Even if something is left undone, everyone must take time to sit still and watch the leaves turn."- Elizabeth Lawrence
*****************
We are a people of "go". "Move". "Achieve". "Complete". Our microwave popcorn takes too damn long to pop and it takes whole minutes to get our morning cup of coffee. Various obstacles get in our way and we go around them ... over them ... through them ... whatever it takes to get THERE.
And, when we arrive THERE? We take stock, see what is next, and continue, which is to say "we go forward". Depending on what we went around, over, or through, we are - at times - observed by other individuals who shake their collective heads and utter words like "strength", "drive", "focus". Which, when one takes a moment to watch the leaves turn, one may recognize as complete drivel.
When someone suffers a loss or experiences a sadness, it's not as though they are given the opportunity to not carry onwards. After several days (or weeks or months) of recovery, we are expected to slip back into routine. Even if that routine is just to recover.
Proof?
Welcomed or not, there was a sunrise all over this planet on September 12th, 2001. And there has been a sunrise every day since, too.
*****************
I have said many times that I never started this ... uhhhh ... well THIS ... for anyone but myself. I've always written - even in fits and spurts. I tried writing stories in high school but nothing all that interesting had happened to me yet.
My high school days are long behind me.
This November, I've decided to write ... as I see fit, and sharing on this rather public space only what I'm comfortable with - protecting what is mine, respecting those on the journey with me, and attempting to define my THERE. I realize that, by my own description as written above, I will fail. My THERE - like everyone else's - moves as rapidly as the second hand on a clock. So it may be more accurate to say that I will reveal my journey thus far.
*****************
Perhaps it all started while I was tearing down an abandoned house in November of 2006 ...
*****************
We are a people of "go". "Move". "Achieve". "Complete". Our microwave popcorn takes too damn long to pop and it takes whole minutes to get our morning cup of coffee. Various obstacles get in our way and we go around them ... over them ... through them ... whatever it takes to get THERE.
And, when we arrive THERE? We take stock, see what is next, and continue, which is to say "we go forward". Depending on what we went around, over, or through, we are - at times - observed by other individuals who shake their collective heads and utter words like "strength", "drive", "focus". Which, when one takes a moment to watch the leaves turn, one may recognize as complete drivel.
When someone suffers a loss or experiences a sadness, it's not as though they are given the opportunity to not carry onwards. After several days (or weeks or months) of recovery, we are expected to slip back into routine. Even if that routine is just to recover.
Proof?
Welcomed or not, there was a sunrise all over this planet on September 12th, 2001. And there has been a sunrise every day since, too.
*****************
I have said many times that I never started this ... uhhhh ... well THIS ... for anyone but myself. I've always written - even in fits and spurts. I tried writing stories in high school but nothing all that interesting had happened to me yet.
My high school days are long behind me.
This November, I've decided to write ... as I see fit, and sharing on this rather public space only what I'm comfortable with - protecting what is mine, respecting those on the journey with me, and attempting to define my THERE. I realize that, by my own description as written above, I will fail. My THERE - like everyone else's - moves as rapidly as the second hand on a clock. So it may be more accurate to say that I will reveal my journey thus far.
*****************
Perhaps it all started while I was tearing down an abandoned house in November of 2006 ...
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