Chocolate & Vicodin By Jennette Fulda

I finished a new book today.



It took me a total of 3 days to read it through.  Once I started, I just could not stop.  I related to Jennette the second I opened the book...while not on the weight and food aspects...but definately on the headache front.  I saw so much of myself while reading it.  She, just like my fellow blogger friends, made me feel so not alone in my chronic pain and quest for pain relief.

I particularly enjoyed her no nonsense, sometimes sarcastic attitude and brutal honesty.

What really resonated with me while reading the book were her stories of feeling lonely and isolated in her suffering and no one really understanding her invisable illness...including doctors.  Also, that people automatically think you are all better just because you're getting through the day without curling up in a ball and crying out loud (at least in public)...when in reality...we are crying...we are screaming and crying on the inside...and we are sobbing behind closed doors.  We are getting through the day because we have to. We are getting through the day because we are popping multiple pills and doing ridiculous procedures just to do so.  Then when that day is over...we are holed up in dark rooms, with ice packs on our heads, praying to be able to push through the pain tomorrow.

A MUST read for all chronic pain sufferers or friends & family of chronic pain sufferers...even for someone who just wants to understand what literal hell it is to have an unrelenting headache every. single. day.

By the way...I totally wanna eat one of those chocolate cupcakes with all the pretty little feel-good pills on top!

Fill in the Blank Friday

Ok...so I know I am a little late and it's not Friday...but give a girl a break...I just busted my ass saving lives and bringing new life into the world for 2 days straight! =)

1. I am currently obsessed with my ipad!  I am still learning how to navigate the thing, as I am very technicalogically challenged...but...I have downloaded lots of fun apps and get to read my books on it, as well as my favorite blogs!

2.Today I am exhausted because I worked 2 back to back 12 hour shifts which included laboring a sick momma on high risk meds that ended up a cesarean section and going to another unit to assist with a "Code Blue" by doing chest compressions...which let me tell ya...can wear you out!  Whew!

3.The age I am is 33 and the age I feel is 83!  The fatigue of being in pain non-stop makes me feel 50 years older!

4. My favorite place is the beach.  It's about 10 minutes from my house and I practically live there during the summer with the boys.  However, the task of packing up and dragging a bunch of stuff out there for the day can be quite daunting.  Overall it's worth it when you're floating in the water, listening to the waves and birds, smelling the salty sea air and getting a tan! 

5.Something I have been procrastinating is having my dad over for dinner.  I HATE to cook.  I have tried to like it, but I just don't, especially since my pain has become chronic.  Gotta save my spoons!  Thank God Jesse cooks and the boys like take-out!

6.The last thing I purchased was a bag of sea salt potato chips at lunch from the MMH cafeteria.

7.The thing I love most about my house is my bed...preferably with my Sweetie, my boys and my puppies all snuggled up with me!

So...you can join in the fun by either filling in the blanks in the comments or link up over at The Little Things We Do!

Blog Design

Ok...so I probably look like an indecisive psycho...

That's probably cuz I kind of am.

I cannot for the life of me decide on a design for this blog!

Any suggestions???

Oh...and I am totally blaming this indecisiveness on the headache and one too many pills...that aren't even helping!

Psych Evaluation

Last Wednesday I had a psychological evaluation.

It took a whopping 3.5 hrs to get through this evaluation.

In order to be approved by my health insurance for an occipital nerve stimulator, they require that I be evaluated by a Psychologist.

We did alot of talking.  In fact, this guy was great at making me feel comfortable at talking.  Now, those that know me well would laugh...because, let's face it...I am a talker. A BIG talker! However, I tend to clam up and put on this "must be perfect" act when faced with anyone in the mental health field. 

After the Dr. got all the sordid details of my past and my medical history, we moved on to tests.

I had to take 2 written examinations.  One of which was 300 questions!  Good thing I am a quick test taker.  It was comprised of 300 true or false questions about how I perceive myself and how I believe others perceive me.  Regardless of  the anxiety I have and the bouts of sadness this chronic pain has brought about...I do think I am fairly mentally stable.

The final verdict from the Dr. was that he is in deed recommending a trial stimulator for me and that he does think I am mentally and emotionally stable to handle the procedure.

Me, on the other hand...not really so sure.  I am a nervous wreck!

Distraction

I find it odd that when I am at my worst pain, I feel the desire to inflict more pain upon myself.

For instance...when I cannot tolerate the thumping and throbbing in my head anymore...it comforts me when Jesse either takes the palms of his hands to either side of my temples and squeezes with all his might...or takes a fistfull of my hair at the base of my skull and tugs as hard as he can.

I have also gone as far as banging my head againt the wall, punching the top of my head with my fists, and wrapping different accessories, such as a towel or belt, around my head tightly.

It has even gotten to the point where girls at work and my children will give my hair a yank if asked.

Wierd, huh?

I asked Dr. B. about this bizarre behavior I have been engaging in...

His response...

Good ole' distraction.

By creating different sensations...whether it be different types of pain, different areas of pain, numbing or vibration...it's all doing the same thing...

Distracting me from the relentless, chronic pain I feel in my head.

Distraction techniques can be very useful when trying to cope with pain.  While it does not take the pain away, it can help take the edge off.

I do not advocate going to the extremes I have gone...but less dramatic techniques I also use includes...

-Watching tv
-Reading
-Meditating
-Yoga
-Taking a bath

But...really...back to the hair pulling it is!

Om.....

I have been a huge fan of yoga for 12 years...hell...I even have the "Om" symbol tattooed on my body.

After Brendan was born, I religiously practiced yoga everyday, in my living room, during his naps.  Yoga is what led me to shed all of my baby weight...and then some.  In fact, after Brendan was born, I was actually in the best shape of my life.  Granted, I was only 21 years old, but yoga made me long & lean, strong and balanced.

I was a dancer all of my childhood.  I think the 13 years of ballet, tap and jazz fueled my passion for yoga.  In a way it makes me feel like I am dancing...in slow motion...focusing on my breath.

As the years passed, and I got busier....my yoga practice fell by the wayside.  Although I have always gone back to it at different times.

Before I started feeling REALLY bad with my head, some of my girlfriends introduced me to Bikram Yoga.

For those of you not familiar with Bikram, it is a system of yoga that consists of a set series of 26 postures and 2 breathing exercises. Bikram is practiced in a room heated to 105°F with a humidity of 40%, causing it to be categorized as a form of hot yoga.

Now...at first I thought it was completely nuts to do anything in a room that hot....but after my first class...I "got" it...and was hooked....for a little while anyway.  The heat completely loosens up the muscles and joints...I could do things with my body I hadn't done in years.  There is also nothing better than to sweat all those nasty toxins out of your body!

Now as my head became more and more fickle, I decided the Bikram was just a bit too much.  So, it was back to doing the Hatha, Vinyasa and Ashtanga types of yoga.

While on my LOA from work last year, I did a slow, relaxing yoga series every single day...along with practicing meditation.

Since being back to work the past 6+ months...I haven't done squat.  It's difficult enough for me to even make it through the day!

But, after Dr. B. mentioned maybe doing some yoga might be beneficial to my head...I decided that I needed to pick it back up...last night.

One of the doctors I work with has been wanting to try Bikram...so being the brilliant (non-thinking) person I am, I offered to go with her.

So at 6pm yesterday evening, I found myself sweating my ass of in HOT HOT HOT yoga!

At one point, Dr. L. looked at me and told me to lay down as I was about to either pass out or throw up all over the place! 

Of course I didn't listen.  I kept right on going.  And thankfully did neither of the two.

I did make it through the 90 minute class...in fact...I was quite impressed with myself.  I limbered right up and remembered most of the postures.

But...I did end up with a WICKED migraine.

I came home after...took way too many pain pills, laid in the bathtub with ice on my head, and sipped mint tea.

Today...I worked 12 hours, breaking down in tears (only once though) from the excruciating pain radiating out of my head and walking around with sore, wobbly legs.

Jesse said perhaps Bikram is too much for me to handle right now...maybe the slow flow restorative type might be better?!?

My Favorite Valentine's

What a lucky girl I am!

More Contraptions

Here are some more contraptions I have added to my "Arsenal of Weapons."

Weapons against head pain.

In the back there is the Homedics Shiatsu Massage Pillow with heat.  Actually this is behind my back right now as I type this.  However, it does hurt a little.  The massaging motion can be a little strong and well, the knobs that rotate in a circular motion are hard as a rock. 

To the right is my new cervical traction device.  Probably my most desperate, pathetic purchase to date.  Jesse laughs hysterically when I put it on as I look like something straight out of Star Wars.  Problem is, I have a long neck to begin with, so I need to inflate it all the way to get any traction...then I panic that it is going to pop in my face!  It kind of feels good on though...I like the stretching feeling.  It's a hurts so good kinda thing.

Then there is my pink Brookstone neck massager that I bought in WI.  I have mentioned it a few times...but now you can all see it.  I like to lay on it at the base of my skull...I imagine the tingling sensation is what the ONS might feel like.  I hope it is!  Only problem is...the vibration make my teeth chatter!  Haha.

And last but not least is a new ice bag that I just ordered.  I figured since my ice packs are basically a permanant fixture on top of my head...I might as well get a cute one.  So...ta ta ugly blue rubber ice bag!

Superbowl XLV



Feelin' so fly like a Cheesehead!

  Last night Jesse and I went to his parents house to watch the big game.  Naturally, being from Wisconsin, they are all die-hard Packers fans.  And that is NO exaggeration!  By default...I have also come to love the Packers over the last 3.5 years.  Hell...I'd be kicked out of the family if I didn't!  Haha!  Same goes for the University of Wisconsin Badgers.  Jesse flew up to WI three times this season....twice to see the Badgers play at Camp Randall (one time I also went along) and once to see the Packers play at Lambeau Field. 

Anyhow....yesterday morning I woke up feeling fairly well.  As always, I am super sore and tremendously stiff...but after a cup of coffee, taking my time getting out of bed and popping some pain medication...I was raring to go.  I don't know what came over me...as I have had very little motivation and "get up and go" these days.  I ended up completely re-organizing my apartment and now have an enormous pile of stuff to take to Goodwill and to sell on E-bay.  I'm sorry... But I just cannot justify giving away some of my designer bags and certain jewelry for free.  However...I am on a mission to simplify my life. I hardly ever wear jewelry anymore, other than a ring that Jesse bought for me on our first Valentine's Day and a diamond ring handed down to me from my grandmother from when she was my age, and my lovely CZ studs in my ears.  Guess my lack of jewlery wearing and bag toting has to do with the fact that I no longer have much of a life.  My days consist of wearing blue scrubs 3 days a week...and pj's, yoga pants and tee's mostly every other day.

So after my rampage of going through the apartment like the tazmanian devil, the boys went with their dad to an enormously elaborate Superbowl party at their aunt's bazillion dollar mansion...and Jesse and I headed off fhis parents.

I kind of went between paying attention to the game, taking more medication, and playing on my ipad.  I had only a few sips of Jesse's beers throughout the night.  Well approximately one hour before the game was over...I had had enough!  I think I pushed myself too hard without a break during the day...and all the hooting and hollering over the game didn't help.  My head felt as if it was on the verge of exploding.  I cried the entire way home...as I was also stuck driving Jesse's truck because he was a tad bit intoxicated.

I came home, medicated yet again, packed my noggin in ice and passed out til 10 o'clock this morning.

I had my brain MRI this afternoon.  Sedated myself as I am very claustrophobic...so it went pretty well...and quick.  Think I dozed off here and there.  The tech said nothing really "jumped out" at him and he allowed me to review the pictures.  They always do that for me as kind of a "professional courtesy."  However...I don't really know what I am looking at on an MRI...but I saw nothing that would look like a lesion and certainly no tumors.  Obviously that's fantastic...I still always secretly wish they'd find something benign they could just remove and make my pain go away though.

All in all a decent weekend...and I am THRILLED for my sweetie that his Packers won the Superbowl and he can be proud of his new man crush...Aaron Rodgers!  He even referred to Clay Matthews as a stud last night!  Haha!





The Winning Moment

  

 





From the Mouth of My Little One

"Mommy...why don't you take some medicine for your headache?"

The Saga Continues

Here is the latest on my quest for relief.

I saw my pain management physician yesterday.  I've decided that I would really like him to primarily treat my headaches.  He is young, innovative, takes my pain seriously and treats me as a peer....which I like.  I hate when doctors have that  holier-than-thou attitude and act so patronizing.  Not only have I been dealing with this ailment for 7 years...I have spent countless hours researching signs, symptoms, causes, treatments, diagnostics...you name it.  Plus...I am a nurse...I do have some medical background.

So while I told him I was really interested in him being my main "head" guy, he is encouraging me to at least consult one more neurologist.  One that he has a pretty good repoire with and one that is usually on board with his plans of care.  Which is what I need.  I am so frustrated with doctors disagreeing with each other!  I see it at work...I see it in my care...it's annoying.  No wonder patients get so confused.

So tomorrow I am going to call and schedule an appointment with yet another new neurologist. 

Dr. B. also scheduled me to have another MRI of the head just to be on the safe side. I do have a right sided temporal hemangioma, which has been stable for years and is unlikely to be the cause of my headaches.

I am also in the process of waiting for approval from my insurance company for an Occipital Nerve Stimulator trial.

As Dr. B. said...I might as well go ahead with the trial...if it doesn't work or I don't like it...I won't get the permanent...if I do...I will...as simple as that. 

One question to my friends out there that have the stimulators...do you all have your leads placed at the occipital nerve and/or in the epidural space?  I think he wants to try 4 leads on me if it gets approved...2 in each spot.

My decision to go forward with the trial is that I really would like to eventually eliminate the amount of medication I take, particulary pain medication.  I am petrified of being dependant on them, if I'm not already.

Most of the large headache clinics I checked out had a "one size fits all" medication regimen they give to patients.  I've done numerous med combos and I am not willing to do more. 

So...the saga continues with waiting for approval from the insurance company.

Keep your fingers crossed, my friends!!!