File Away…

I just realized…I’m of an age…and…no…I’m not talking about hot flashes…although…they might fit in here…I’m talking about medical records…and…no…I’m not talking about a department at the hospital…I’m talking about the file that is ever growing in my closet…

So…what is precipitating this ever expanding file…well…like most things in life…it is a multi-faceted answer…

The Chiari I Malformation started it…when I realized…that I’d had symptoms for years…and…tests…the results of which…were now lost…and…they could have been of value in determining when my brain went south…literally…you see…hospitals don’t keep MRIs forever…they usually keep a report…but…not the films…

It was then…I realized…yes…I’m a nurse…and…yes…I’ve probably told patients this a thousand times…but…it’s different when it’s you…that…I had to be my own advocate…I had to keep up with my own health information…

So…the file began…with a complete written history of my symptoms over the years…it grew fatter…with MRI results…and…then with CDs of all the MRIs…that way I’ll have them forever…you can request these…the facility may charge a small fee…but…worth it…

I know…you might expect…that I would keep those kinds of records…but…what is amusing to me…I’m starting to put things in there…that I used to just remember…like the date of my last Tdap shot…lab results…and…the name of the antibiotic…that I have an anaphylactic allergy to…

Yeah…you’d think I’d remember that name…after my lips swelled until I looked like the Aflac duck…I whelped all over…and my vocal chords swelled until I lost my voice…but…somehow…Levaquin…is a hard name for me to remember…maybe…I should write it down…maybe…I should put it in a file…oh…I just did…

So…all this rambling…is to say…that…even as a nurse…I thought keeping a medical file…was for somebody else…not for me…maybe it was for old folks…or really sick folks…but…not for me…

Now…I know…you are never too young…to be your own advocate…a lesson…I suppose…I learned the hard way…but…Bertha…says…that’s usually how I learn…as…she hits me over the head with the skillet again…do…you think…maybe…just…maybe…that caused the Chiari…she assures me it didn’t…but…I’ll add it to the file…just in case…

Hmmm…this blog certainly didn’t go the direction…that…I thought it would…oh well…they usually don’t…have a great day…be an advocate…yours…

Jane

All’s Not Fair…In Love and Chiari…

I want to write…but…I’m not sure that my thoughts are coherent…quit rolling your eyes…and…snickering…my thoughts are usually coherent…well…sometimes…okay…you’re right…they’re rarely coherent…good…then you probably won’t notice the difference…you are getting testier than…Bertha…geez…

I stayed home from work with a headache…I called it a migraine…people understand migraine…but…honestly…it’s a Chiari headache…and…I’ve had them for years…although…I didn’t know what caused them…I just knew…that bright lights…barometric pressure changes…and certain music…would trigger headaches…that sometimes lasted for days…

At this point…almost bedtime…my head doesn’t exactly hurt…but…it’s still cloudy…feels like I have a hangover…and…no…I haven’t been drinking anything…except water…and I didn’t take narcotics…don’t be so quick to assume the worst…geez…it’s just the fuzziness that lingers after the pain goes away…

Honestly…I don’t have the headaches…nearly…as often as I used to…but…each time I do…it feels like an assault…a disappointment…each time one is over…I somehow…assume it is the last…

Then…I remember…

He said the surgery wouldn’t stop the headaches…but…I wanted it to…he moved my brain…tucked it all back in…where it was supposed to go…I wanted all the symptoms to go away…it seemed only fair…

He said the surgery wouldn’t reverse the numbness…but…I wanted it to…he moved my brain…tucked it all back in…where it was supposed to go…I wanted all the symptoms to go away…it seemed only fair…

This list could go on…and…on…with what could be considered minor inconveniences…except…there’s little point to enumerate…most of us have a list of some sort…badges of honor…badges of dishonor…from years of living…scars…visible…invisible…that we deal with…

And…although…it sounds like I’m whining…I’m really not…I’m just coming to terms with it one more time…

He moved my brain…tucked it all back in…where it was supposed to go…I wanted all the symptoms to go away…it seemed only fair…

Jane

Promises…Revisited…

Joys are like stray cats…the more you feed them…the more you get…

Bertha

Yesterday…I wrote about promises kept…and I believe that keeping promises…especially to myself is vital…to my overall wellbeing…but…there’s a flipside to yesterday’s post…and that is…my Mama’s sage advice…don’t make promises I can’t keep…

Like a kid in a candy store…my eyes are often bigger than my stomach…okay…not really…I know my stomach is way bigger…I have a mirror…it’s just an expression…geez…anyway…my intentions…my promises…are often bigger than my capabilities…AKA…my energy level…

Yesterday was an awesome day…I made no promises…I just did things…I felt great…about nine o’clock…as I took the third load of clothes out of the dryer…I realized…I felt good…I mean totally…I felt good…

My next realization was…I couldn’t remember the last time that I had felt that way…no underlying headache or fuzziness…no fatigue…all things that I have since my Chiari surgery…and…I know…it was over a year ago…get over it already…and trust me…I want to…and…it is so much better than even six months ago…

Bertha’s recommendation…make the most of it…enjoy it to the fullest…she didn’t even hit me with the skillet…and…I did…I got so much accomplished…and…even visited with a dear friend…it was a beautiful day…I didn’t want it to end…

Part of the beauty of the day was…my realization…that my lack of accomplishment on many days…has nothing to do with being lazy…it is so easy to convince myself that laziness is the culprit…it is so easy to blame myself…when in fact…that just isn’t true…

My take away from this…make realistic promises…to myself…basing them on how I feel…not what I think the world thinks I should do…peer pressure rears its ugly head…

Today…I woke up with a headache…I’m tired…and…although…I’ll do what I need to do…I’m glad I did the laundry…and vacuumed…and all those other things…yesterday…because…today…I’m making no promises…

Jane

A Second Time for Almost Everything…

The School of Essential Ingredients by Erica Bauermeister…was the first book I read…when I got home from the hospital last year…there wasn’t much I felt like doing…but…if I curled around…just so…I could get in a position on the sofa…that supported my heavy head…and I could read…

It was the perfect book for me at the time…it was soft…it was comforting…I could almost smell the food they were cooking…reading it…made me want to eat…it made me want to cook…it made me want to live…it made me want to read…a lot…and I did…finishing it in a couple of days…

It was an easy suggestion for book group this month…

Interestingly…I’m finding…as I reread it…that I’m enjoying it even more…the softness…the texture…I’m not in a hurry…I’m savoring the words…I’m letting them soak in…

The experience has made me realize…how often I read too quickly…so enthralled by the plot…wanting to know what is going to happen…that I miss the words…the delicacies of the pictures painted…the true beauty of the book…

It’s a pattern that I’m seeing repeated in my life…the need to…savor the coffee…breathe deeply…look for the joy in the moment…read slowly…do one thing at a time…be present…

Thankfully…there’s another cup of coffee…another breath…another moment…another chance to read…or reread…another chance to slow down…and be present…

Jane

Drop the Mouse…Step Away From the Forum…

Put on a party hat…blow a horn…throw some confetti...pop the champagne…join me for my Anniversary celebration…

Well…honestly…put on your tennis shoes…drink some coffee…eat a bowl of oatmeal…and let’s go to the gym…that’s how I’m really planning to celebrate the one year anniversary of my…Posterior Fossa Decompression…AKA…Craniotomy…AKA…Brain Surgery…

When the Neurosurgeon first confirmed the diagnosis of Chiari I Malformation…I needed more information…you know what I did…geez…I’m so predictable…I Googled…

And…while I got some professional medical sites with some useful information…for the most part…especially when I was looking for what to expect afterwards…I found links to forums…

And…against my inner wisdom…AKA…Bertha screaming like a banshee…DON’T GO…

I went…

The posts literally scared the bejesus out of me…I didn’t stay long…at least not pre-op…I knew I couldn’t read these terrible things…and go through with the surgery…I just couldn’t…

After surgery…it was a different story…I had strange things going on…were they a complication…were the normal…were they related…I Googled…

Yup…more forum links…less professional medical sites…

I went…I needed to know…what I found was a delightfully supportive group of people…who were having the absolute worst case scenarios that you could imagine…

Simple little things like my runny nose…elicited stories of botched surgeries…and leaking spinal fluid…I went back to see the Neurosurgeon…he reassured me…I had a runny nose…probably caused by the same allergies that had made my nose run for 40 years…my spinal fluid wasn’t leaking…

I developed a strange earache…yup…more leaking spinal fluid…and botched surgery stories…I went to my medical doctor…earwax buildup…

My face started hurting…I was nauseated…I had a fever…un huh…same stories…I went to the dentist…abscessed tooth…(it had been precarious for a few years)…tooth extraction…no spinal fluid leaking…

Might I mention that spinal fluid leakage was my biggest fear following the surgery…

Headaches resulted in unlimited accounts of complications…back to the Neurosurgeon…development of a small pseudomeningocele…(tiny leakage of fluid contained in the skin)…fairly common…reassured…I was doing fine...

I don’t even remember the next thing that sent me back to the Neurosurgeon…for more reassurance…and finally I said…look…I’m scared to death here…I know I’m a nurse…I know I should know this stuff…but…it don’t…I need to know…am I going to live a normal life from this point or not…

He gave me a puzzled look…didn’t I know…I was doing awesome…I didn’t have all the comorbid conditions that those people in the forums have…I was young…I gave him a puzzled look…he reassured me I was…he reassured me that he would be there to answer any questions that I might have…

Basically…he reassured me…I was essentially going to be okay…

I left the forums…not that I’d ever…joined…I just sneaked around and read what they said…and left…I realized that the people who had good results from their surgeries…weren’t spending time posting in forums…they were living…finding other ways to spend their days…I wanted to be one of them…

I’d love to say that I haven’t been back to the Neurosurgeon for strange symptoms…but I have…and thankfully…each time I have been reassured…and sent home feeling better…with…no leaking spinal fluid…

Jane

When Intentions Collide…Julie and Julia Provide…

Okay…technically…it’s still 2011…but I really wanted to get a jump start on my 2012 intention…

I spent yesterday…getting ready to live fully today…I joined a new gym…convinced that as the one year anniversary of surgery arrives…I have the stamina to exercise again…I took paintings to be framed…bought cloth napkins for my newly gifted frog napkin rings…I planned my to-do list for today…

But…alas…my body evidently knows that it is indeed the last day of 2011…not yet the first of 2012…

The cold I’ve been attempting to ignore…another…most likely re-gifted…Christmas present…is making itself well known…and reminding me…being gentle with me…isn’t going away…just because I’m enjoying life to the fullest…

I’m attempting to reconcile the two…listening to my sniffling body…while fully enjoying a day in my PJs…watching Julie & Julia…on TV…and interestingly…there are no accidents…it seems to be exactly the movie I need to encourage me…and keep me in balance…

I’m reminded…that I must follow my passion…but…at the same time…respect my everyday existence…for it is from that existence…that my passion flows…

I’m reminded…to keep going…to keep writing…even when I don’t know where…it will take me…for I am going exactly where I need to go…

I am reminded…that food is truly more than nourishment for the body…it can…and should be nourishment for the soul as well…and should be savored…not swallowed without thinking…

I am reminded that there is more than one way…some doors will close…and others will open…

Interestingly…I feel a little better…may even accomplish a few of those to-do items…but…they seem of little consequence now…the urgency is gone…as I gently enjoy life to the fullest…

Jane

It Wasn’t Brain Surgery…Well…Yes…I Guess It Was…

I wore a three-strand turquoise necklace yesterday…it looked lovely with my brown outfit…I got several compliments…I accepted them graciously…it was a milestone…

Not the accepting of compliments…although I admit…that still isn’t my strong point…but the ability to wear a necklace…for over 12 hours…that was the milestone…it’s been almost a year since I could do that…

When told that I required brain surgery for Chiari I Malformation…exactly a year ago yesterday as well…I hadn’t realized the poignancy of it until the words appeared on the page…many things went through my mind…the obvious…would I live or die…there are always risks…what kind of aftercare I would require…and who could provide it…a complication of living alone…the possibility of staff infection…I am a nurse after all…

But…as all these things ran through my mind…I never considered that I would have major changes in common…ordinary…everyday things…

I had no clue that my head would feel like it had a two-by-four attached to the back of it…stealing the simple pleasure from laying on my back…or laying back in a warm bath…and totally change the depth perception of leaning back into a headrest…

I had no clue that my hair would be sore…literally for months…or that it would sparkle when the sunlight hit it…not a comfortable feeling I might add…

I had no clue…that wearing my favorite earrings would suddenly feel akin to hanging a cannon ball from each ear…

I had no clue that the seeming weight of my head…would make sitting at the computer for more than five minutes…totally out of the question…no writing then…

I had no clue…that because my surgery also involved my cervical vertebrae…that wearing a necklace would become unthinkable…

I had no clue…about a lot of things…the list could go on and on…but…honestly…I’m glad I didn’t know…there was enough to dread…enough to fret about…without concerning myself with the foolishness of accessories…

Even though due to permanent nerve damage…I still have many…most…of the symptoms that I was having…and will live with them the rest of my life…they are familiar…nuisances…like annoying relatives…who are accepted for who and what they are…not always welcome…but always there…my surgery was a resounding success…

So…I celebrate…my hair isn’t sore…it rarely sparkles…I can wear most earrings…obviously…I can sit at the computer…I can write again…and…now…as I approach the one year anniversary of the surgery…I can wear a necklace…definitely a milestone…

Jane

Gray is the Old Brown...

I ran into my hairdresser tonight…okay…I didn’t really run into her like with the car or anything…I just saw her at an event…geez…you are picky today…

Anyway…I’m really a week past needing a cut…I’m sure she was aware of my shagginess…but she never said a word…she’s nice like that…

Pineapple...hot off the clippers!

In fact there are a lot of things I like about her…tops on the list is the way she cuts my hair…except for that one head shaving she gave me before my surgery last year…she said I looked like a pineapple…and yes…I asked for it…but I digress…

I also really appreciate…that she never makes snide remarks about my gray…

And we aren’t talking a strand here…a stray hair there…we’re talking full head of…‘looks like Mama on Mama’s Family’…gray…

I’d like to say that I am one of those women…who decided to age gracefully…to be exactly the way the good Lord made me…but that ain’t exactly so…

I’m scrapy…I put up a fight…

I saw the first gray strays in my early thirties…I highlighted with a vengeance…in my forties…it took the heavy-duty all over stuff…the only problem was…my hair really didn’t take to color very well…

I’d spend an hour or so in the salon…getting it just the perfect shade of light brown…only to have gray temples and a strange shade of orangish-gold everywhere else within a week…

I’m also blessed with rapidly growing hair…which was truly a blessing when I look liked a pineapple…on the other hand…I always had those bright, shining roots…AKA…it didn’t take a hairdresser to know…did I or didn’t I…everyone knew that I did…and I needed to…

So…a couple of years ago…after careful consideration…I took the plunge…I went gray…

Honestly…most of the time I’m happy with the results…

But if the truth were told…I would rather have light brown hair…

I’d rather look like I’m thirty…I’d rather weigh less…sag less…ache less…just to start the list…

Unfortunately…the truth of the matter is…I look like a fifty-something…I need to lose a few…okay…a bunch…that skin ain’t going to be taunt again…and the aches…oh well…that’s why they make heating pads…

But…you know…I’m happy…I’m content with my life…I like who I am…I like how I am…gray hair and all…the pounds, wrinkles, and aches…I deal with…it’s all part of being me…of growing older…and hopefully wiser…

Maybe I am becoming one of those women who decided to age gracefully after all…who knew…

Jane