Subjective Pain, Yo Yo Ma, Porcupines and Soofganiyots

photo by Lowell Lipton

I have found just enough amusement in the words "migraine pain is subjective" to just let it go.  60-some days in with an unrelenting headache/migraine I find myself on the cusp of going back to work in a week--there are a lot of questions I'm asking myself about this, but the main one is, "will I be able to work up to my own high standards?"  Will I be confident and comfortable with the product I put forward?  God, I really hope so.

I often thought I'd go crazy at home not working, but I found that to be an artificial construct I created to make myself feel better about not working.  The reality is I needed these two months and quite frankly I need more time to work out the kinks in my pain managment routine--you see I can get to about 3 pm right now with the pain at about a constant 5 (with 10 being the worst).  If I take a nap, then I can extend that to about 7 pm...but at that point...zoooey mama...it ratchets up and I'm wanting my pain medicine, a dark room and a comfy bed.  All of this is in the context of me not reading, driving or being in any stressfull situations.  Add those three things back in and well, I'm not sure what it going to happen.  Someone once told me to "get comfortable on the edge of the unknown--to be curious about what is coming...".  I think that lesson was for right now.

So, since the FMLA folks find headaches and migraines "subjective", I'm back to work a few weeks earlier than I had hoped.  It will take a lot of planning and management on my part to make going back to work, well, work--both for myself and my teams--not to mention my clients and I want it all seamless, hidden from them because it's not their issue and I don't like feeling weak or "less than" in front of others.  Of course, this is silly because I'm not even back to work and I'm already adding stress.  Excellent.  Good Plan. 

So, we'll see.  Curious about the unknown and all of that. 

During these two months off I struggled early on with the idea of not having a "purpose" other than getting well and I made a list of things I wanted to accomplish.  Of course, I wrote that list in a journal and thought I could journal all about accomplishing this list.  Oh, belly laughs for sure. Serious hysterics at this one.  The list mocked me from afar because I didn't touch the friggin' journal past week two.  That, however, does not mean I did not accomplish a few things.

First, I did learn how to knit. It is not calming for me, but I did it anyway. I can knit basic scarfs with one stitch...if I try to pearl it all goes to hell.  So, all the scarves I'm knitting are knitted, no pearls.  For those of you getting them for a holiday gift...deal with it.

The office, after two years, did get organized. It felt good, but not as good as I thought it would.  Big let down.  Basicially I realized that now I have to keep up the organization.  Not so much a silver lining for me. 

And, I did go through all of the kids schoolwork from the past three years and put the items we thought 'keep worthy' into their memory trunks...along with tiny underwear, baptism outfits and the pregnancy diaries I did keep when I was "round for a reason".  Now my daughter is creating 'memory boxes' for Big Spitty our deceased cat, for her favorite stuffed animal and for the 'first grandparent to die'.  Lovely.   "Monster creation" was not on my list, but I could go back and write it in and then immediately cross it off just to feel that sense of accomplishment. 

I've gotten into an exercise routine...walking, yoga-ing and rowing...I feel so much better for it.  And my iPhone is chock-a-block full of new music for this new 'Exerciser Rene'.

Which is how I figured out that Yo Yo Ma is for Fall...especially Fall mornings that are kinda foggy.  He works really well then. And, I found that I prefer walking to singer/songwriters and alternative music as opposed to rock, pop or techno (unless it's Gavin Froome and then it's good.)

Speaking of techno, that's what my 8-year old daughter wants for Christmas.  That and a giant (bigger than her) stuffed Penguin.  My son wants "30 books and a porcupine".  Seriously, 30 books!  He didn't even get to put the Mac Air on his list...it was no sooner out of his mouth than the laughter began.  First time in a while my husband and I laughed so loud, so hard.  We had to thank him for that.

Back to the porcupine. His best friend has two ground hogs and a hedgehog, so my son figures, what is better than that?   Obviously, he got his critical thinking skills from the other side of the family.  :)

Tonight, the eve of Hanukkah, I made Soofganiyots or Israeli Doughnuts for the kids to take in to their classes tomorrow.  While my Jewish husband had never heard of these, I know they do exist and that they are for Hanukka because they are in "1000 Jewish Recipes" cookbook that was given to me when I married my husband.  So there!    My son, who was helping me for a bit, did ask why we didn't have a "1000 Catholic Recipes" cookbook for me, so I quickly took the conversation back to the porcupine...much safer and easier discussion.

It's about 10:30 pm...we sent my daughter to bed about 2 1/2 hours ago.  She just peeked down the stairs and asked me about Mad Cow disease. 

All I can think right now is, thank goodness I learned recently that pain is subjective.

The Paper Chase: Things to be Thankful For And The Sergeant's List

So I was going through all of the paper floating around our house today--paper that our children create on and with in their various activities throughout the day.  Not just school related, it was found falling out of backpacks, stacked on desks and chairs, under beds and yes, even (and already) in the bathroom on the floor by the toilet.

At first, it was just a regular chore, me the memory keeper sorting through what goes in the trash, what each child might want to keep and what I might want to put in their memory trunks for later, you know, when they are grown ups and I want to embarrass them.  However, about half-way through I found myself sitting in the craft/music/sports room reading through some of these--some making me laugh, others making me cringe and some just plain old confusing me as I couldn't 'see' the child that created the thing I was looking at...it wasn't a child I was acquainted with obviously.  Even if it was my kid.

First, I'm happy to see in the "Things I like About"  booklet by my daughters classmates that all of them find her funny and amusing.  A few of them even find her awesome, wierd, nice and terrific.  I agree with all of that (although the spelling was changed to for the sake of her second grade friends) and I 'm happy to see all of these great descriptors.  However, I was most impressed by two of the children who said that she is a 'good friend".  These are not children that my daughter mentions much or has play dates with and I only knew them from the class list or the mentions on the class blog.  So when I asked my daughter about it, she just said that some of her classmates aren't that nice to these two kids and she "kinda takes care of them' sometimes. I asked her to tell me more about this and, with a good amount of impatience, she just said, "I make sure that no one is putting rocks in their shoes at recess, and that they don't get pushed out of line."

Rocks and recess lines...I remember when making and being a good friend was just that easy and without getting to sappy, I told her she was a good kid and that I was proud of her and gave her a hug.  "Whatever, Mom.  Are you sure you didn't take too many of your headache pills today?"  And......scene.

Not that she knows it, but she somewhat redeemed herself later when I read her "Things I am Thankful For" list, because it was pure "her"...sweet, funny and a little wierd.  And here it is:

1.  Food
2.  Making Food
3.  Uncle Charlie

4.  Air

5.  Mom and Dad
6.  Teachers
7.  Brother
8.  Cousins
9. Hearts
10. Life

And in her own "Spinal Tap" moment, she added her own number 11.  More Food

I'm just glad I made the list and I've used logic to be okay with the fact that we came after "air".

Later, I came across an oddly important looking document entitled, "Sargents Test" (sic).  It was obvious from the writing that my daughter had written the questions and my son had answered them, part of some game they had been playing in the park earlier.  According to the document, he passed his "Sargents" test, although the "tester" told the "testee" that he still needed to come up with a better "Sargent" nickname.  But I'll get to that later.

Page one of the test was the stuff that threw me--although I don't really know why.  Boys, even boys like ours who have not grown up around guns, and who aren't allowed to watch movies like "Kill Bill" even though their friends get to, play their version of soldier, cowboy, lawman, etc.  It just blew me away that either of them knew enough to ask and answer questions about "flanking maneuvers" or that the 'stock' is the main body part of a gun.

I was happy to see that he had only 'killed' 4 men and that he'd left (or kept...it wasn't that clear) 69 men alive.  That made me happy and hopefull...hopefull that he could see the 'human' factor of a war and not just the 'cool stuff' like guns and flanking maneuvers. Happy in that he might have actually listed to some of the talks we've had when we thought the 'war' stuff was getting a bit too intense.

We've seen him grow into a solid historian about WW II. He's read "Band of Brothers", "Diary of Anne Frank" and about a million other fiction and non-fiction books about WW II.  He has looked up his Grandfather, Rear Admiral Charles Beasley who was in the Pacific theater of the war on a destroyer and he idolizes my father, Lt.Commander John Huey, a fighter pilot off carriers through 1968.  And, because it's who we are, and because we want him to be able to understand and discuss war and soldiers on a different level,  my husband and I make sure to talk to our kids about the wars they've grown up with--the why's and how's of Iran, Iraq and Afghanistan and especially the human factor of the war in terms of our troops and their families, as well as the civilians who are living through all of this on the other side of the world.

I knew all of this, had participated in all of it, but I don't think I knew what it meant to him, or rather what it meant to his character. And I'm not sure I do now.  But I'm going with the fact that "men killed to alive" ratio was 4 to 69...that my sweet boy values life even at this pretend level. This is something we'll keep talking with him about--that both as a budding historian and a boy who plays war in the park, it's easy to read about shooting and killing and it's easy to play at it, but he can never forget that it all comes down in the end to two things...his understanding of the value of humanity and the choices he makes about that value as he continues to build his character..

On another note, I have to agree with my daughter (the "tester") about his choice of nicknames:  Fish Eye and Dead Claw just don't have any, well, meaning or panache.  He'll have to work on that as well.

Melancholy, Baby Or The Soundtrack of A Painful Morning on Short Term Disability

It probably doesn't help that I'm listening to Holly Golightly signing "Slowly But Surely", or that it's a grey, grey day, or that I'm still at home with a migraine/headache that has been constant since September 30th. 

This is a new and unpleasant experience for me...me from the family of "no blood, no foul" and my personal favorite, "you can find sympathy in the dictionary between shit and syphillis".   Me of the marriage to the man who is disabled with a chronic pain/neurological issue for the last 6 or so years and deals with it well.  No matter what, I was always the type of person to get up, find a way to fix things and move forward...that is what I do.

But right now I feel stymied by the cage of bureaucracy I find myself in--stuck between the bars of doctors and insurance companies and short-term disability organizations that all move on their own timeline regardless of what the other company, or patient needs.  I thought since I've been diagnosed finally with Occipital Neuralgia things would get easier with the paperwork, but actually not.  Go figure.

Am I receiving good care?  Yes, I believe my doctor has a firm grasp on the issues and is working a conservative, but smart course of treatment. And, as a bonus, I like and trust him.

But I'm realizing that "care" is a complex entitity for me.  Just like with your children when they are sick, medicine is never enough--they need the right blanket, the right stuffed animal, the right lap to be cuddled in.  The right story at night, the right whispered conversation in the middle of the night and the right silly movie from the couch in the middle of the day.

I doubt it's just me, but adults on short-term or long term disability need our own version of these things:  

My own version of my "blankie":  a call from the boss to check in on you, to let you know that you are still a part of team. Calls and notes from friends and families...not about getting well, but about connecting you to things outside of your own head and body. 

Things you can count on:  like the right records being faxed to the right entity without having to check and double and triple check.  Promised updates on your 'file' coming through when they are supposed to.  Knowing when you are going to get paid so that you can take care of your family.

Things you can accomplish: whether it is cleaning out the junk drawer in the kitchen or trying something new like knitting.  I've spoke of this before on this blog, but it's about having a "purpose", whether big or small, aside from getting better or well.

(Egads, now Richard Thompson is singing "Beeswing"--I've got to play something a little more chipper.)

Luckily, I have a great "blankie" with my friends and family, and I've got a good list of "purposeful to do" things that don't make my headache worse.  The "things I can count on" are a bit more problematic and cause anxiety which then rachets up the old headache....viscious circle.  

(Okay, Lords of Acid, "Let's Get High and Have Fun" sounded better in theory than practice...Now I'm back to Nina Simone, "Four Women".) 

The worst part of it all is feeling like you are being judged for taking Short Term Disability for something like a headache....even when I explain that it's been constant since the end of September.  Even when I explain the double vision, the nausea, the speech dysplasia, the pain that makes me want to grind my knees into a rocky asphalt road while hoping for a car to come by and just clip me a little.  It didn't help when my first doctor asked my husband, in the context of the FMLA paperwork, "How many times has she tried this?".  Me, a 60-70+ hour worker, who is always there for the people I work with and for!  Lowest point, definately. 

But I know where to find sympathy, right?  And relatively, I've got it easy...there are bigger problems in the world and people more worthy of an "emotional blankie" than little old me.  Besides, I've got Yoga tonight...that's good for at least two or three good giggles at myself.

So, I'm ending this with Hello Saferide and "Last Bitter Song". Fitting.

Yoga Made Me Cry, And The Rest of the Week

About 60 minutes into the 75 minute class, the teacher asked me to "grasp my sucess" or something of the like.  I couldn't.  In fact success wasn't just eluding me, it was fearsomely mocking me.  I felt like crying or puking, knowing me probably both at the same time.  We had just got done doing this meditation that required me to fold my right hand together with the thumb under (think about it as the exact wrong way to make a fist when you are punching someone or something), squeeze it tight as you can while attempting whistling and focusing on the end of your nose at the same time--and I think there was a special type of breathing that was supposed to happen at the same time. For me it was like trying to tap my tummy and rub my head at the same time--nothing came together and at the end of the 11 minutes I felt like a complete and utter failure.  I can't whistle, I kept forgetting to look at the end of my nose and I think I was breathing in when I was supposed to be breathing out.  The only good news is what I could hardly unclasp my hand and it hurt, (Yoga Claw!) so I gathered from the feedback that this was a good thing.

The teacher, who was actually amazing, soothing, funny and more made some mention, in general, at the end of the class about being a pre-beginners class and I' m pretty sure it was meant for me.  But no, I'm going stick out the regular old beginners class, so next Saturday I'll be there, fire breath, yoga marching and trying to direct it all to my third eye. Oy vey.

The rest of the week had ups and downs, but overall I'm feeling, finally, like I'm moving forward through this whole migraine from hell medical leave.

UPs: 

• The Austin Weather!  Cool, crisp with the scent of wood fires in the air.  At night, there has been the hint of moisture, so a little fog.  To me, this is perfect weather and I could live year round in it.  It makes for especially nice walks, both in the morning as a workout and at night meandering around the neighborhood with my husband. 
• The Fushigi Experience:  my daughter had been asking for the Fushigi (an anti gravity ball from a long-form commercial that promised magic, delight and it was theraputic!  After three months of mentions, she gets it for her birthday.  Twenty minutes later, the screams of "It's a rip-off" bounce around the house.  You ask why this is under an "Up"?  Well, first, it's funny as hell to hear your 8-year old ranting righteously about the magic ball being a rip-off.  And secondly, it's a good lesson for her to learn.  The Fushigi Ball now holds a place of prominence--a silver, glowing sphere on the mantle under the television.
• New Neil Diamond album!  "Dreams".  I'm not an undercover fan at all.  I love Neil, especially the stuff from the last decade or so.
• Deep Relaxation Yoga.  I have to admit that I've allowed myself to fall off the edge of curiosity  when it comes to yoga and I'm comfortable  building my wings, mistakes and all, on the way down. I even went so far as to by a CD and a lavender eye-bag so when I can do it at home.  The first time my daughter was interested in joining me and it was going well until the voice on the CD asked us to direct our energy to the "right buttock, the left buttock".  Sophia, standing up from her little rug, snorted and said, "I can't learn anything from a guy who doesn't know that people have just one butt!" and marched off to her room.  I wasn't sure if I should let that energy expand into the universe, but I figured it couldn't hurt.
• Halloween was fun!
• Something Is Working:  Whether it's the medications, the cortisone treatments, the better eating, sleeping, exercise or yoga...or all of it together.  My migraines/headaches seem to be leveling out.  They haven't gone away yet, but the seem to be settling into a manageable mode.  I'm looking forward to the next round of procedures and what positive outcome they can bring!

Downs

• In one of my first Deep Relaxation Yoga classes, the teacher asked us to think of and talk about a person in our lives, but who had passed away, who we tried to model ourselves after.  The majority of the women in the room, of all ages, and including me, brought up our Grandmothers and described them as "fearless, fierce, confident, strong, takes no bullshit".  It made me wonder if this generation would be described the same way by our granddaughters.  I'm not sure--I think we have a lack of good role femal, pracital and strong role models, quite frankly and are afraid of the "bitch" label.  When I think of strong and practical women, I have quite a few in my personal life--but only two in my global life (Hillary Clinton, Rachel Maddow and Eleanor Roosevelt).  I must find more, or as Eleanor said, "You must do the things you think you cannot do."
• I'm sick to my stomach and heart about this 'sound bite' society we live in now.  We all want things fixed faster than fast--the economy, healthcare, jobs, education, etc...yet we don't take responsibility for the fact that we all had a hand in creating the fiasco, and it took us a long time to screw things up so badly.  So instead of sticking to the person we voted in, we start searching for the next group of people who, regardlesss of their good intentions, won't be able to satisfy the needs in the time we give them.  It's a vicious circle that concerns me more and more and personally, I blame anyone 40 and younger...we should be smarter than this and we should have the determination to work the hard work to get it done right.
• Finally, and related to above, after living through this mid-term election I look back to something else Eleanor said and find it even more true today, "Sometimes I wonder if we shall ever grow up in our politics and say definite things which mean something, or whether we shall always go on using generalities to which everyone can subscribe, and which mean very little."  I think we all know the side we are erring on.

So, no books yet, obviously, but I'll get there.  As I will with the Yoga...hopefully without tears or arguments over whether there is one buttock or two with an 8 year old.  I just gotta keep remembering...in the future, I'm awesome.