Wednesday, December 29, 2010

Sick of Being Sick

I try really hard not to complain too much in my posts. While, yes...this blog is about my struggles with Migraine & Chronic Headache...I try not to make it all about me, me, me. I hate sounding & acting like a martyr. Sometimes, though, I can't help it.

I am utterly miserable.

Since Monday afternoon I have been in bed...sick as a dog. (Really, what the hell does that mean anyway?).

I have taken every OTC medication & tried every natural remedy I can possibly think of...which has given me no relief. With each day...I feel worse. So now I am guessing I am dealing with a more resistant beast & will need antibiotics.

So here is the real dilemma...

Tomorrow at 7am I am scheduled to have 1 of 2 medial branch blocks at my c-1 & c-2 level.

Now, the responsible nurse in me knows I should've called to reschedule...again...or at least called to inform the staff at the surgery center of my current condition.  I know anesthesiologists don't necessarily feel good about putting sick people "under"...especially for an elective procedure.

However, the hurting, sick me is desperate.  Since I've gotten sick...my head has felt on the verge of explosion & my occipital nerves feel as if they are on fire.

Here is hoping all goes well in the morning & they don't kick me out & tell me to come back another day!

Monday, December 27, 2010

Post Christmas Blues

While I adore Christmas...I despise the days that follow...for several reasons.

First and foremost...the horrendous clean-up!  It literally looked as if a tornado hit my living room...and the boy's room.  I am certain everyone...especially those with kids...can relate.

Then, it is trying to find room for all the new toys, clothes, gadgets, etc!  Every year before Christmas comes, I go through my closets and make the boys go through theirs to get rid of any old and un-used clothes and toys to take to Goodwill.  Although...there still never seems to be enough room.

You see...we live in a shoebox.  That's what I call it anyways...."Our Shoebox".  We are actually looking for a bigger place after the 1st of the year.  Now with 5 of us (including the pups), this place just isn't cutting it.  Unfortunately though, with a bigger place...will come bigger bills. 

Next...it's kind of depressing to me how we all spend so much time and money planning for this big day...then it's all over in the blink of an eye.

Another downer that comes along with the holiday season is the season for fevers, runny noses & sore throats...all of which I woke up with today. 

However...I don't want to end this post without saying that I did have a GREAT holiday despite the stress & headaches.

I was surrounded by loving family and Santa was too good to me and the boys as usual.


The Electric Scooters Santa brought!

Monday, December 20, 2010

Busy...Busy

I went last week to see a new Rheumatologist per the advice of my new Neurologist.  I am SO over doctors...old & new.  In any event, he was SUPER nice and seems very thorough.  I had a ton of labs drawn...I am to call for results this Wednesday.

I (like everyone else on the planet) have been keeping very busy finishing up my last minute Christmas shopping and wrapping presents.  Unfortunately time has once again gone so quickly that I never did get a chance to make Christmas cards....or bake cookies.

Perhaps I will try to squeeze in a family photo in the next couple days....as far as cookies...we are all settling for store bought!

Monday, December 13, 2010

Torture

Well I tortured myself today for the sake of my little sister's Christmas gift.

This year...I was finally able to convince my family to draw names for a gift exchange rather than everyone buying everyone a gift. 

I drew my little sister, Jackie.  Jesse drew my twin sister, Jen.

I was thrilled we got the only 2 girls (other than myself) because I am so sick and tired of buying stinky boy presents!!!

So...why was shopping for Jackie a tortureous event you all ask?

One word...PERFUME!

Now I know alot of you readers out there are shaking and nodding your head in instant understanding...but for those of you that don't get it...perfume shopping is pure HELL for us Migraineurs.  Smelling all those musky scents instantly induced a pounding headache with giant waves of nausea.  I sniffed a grand total of four scents before I decided I couldn't stand it any longer and just grabbed one.

The final product...Viva La Juicy Perfume to go with the Juicy wristlet I got her.

At least if it doesn't smell good...it matches the wristlet!!!





Sunday, December 12, 2010

Day Off

Yesterday I was cancelled from work.  That sometimes happens if we have more staff than patients.  And...I LOVE when that happens!  While most people fear being cancelled for a 12 hour shift...I happen to think that there is nothing better than getting a phone call at 5am asking me if I want to stay home.  My answer, of course, is always YES!

So I rolled over in my big, comfy cloud-like bed and went back to sleep.  I stayed in my bed...napping and watching Christmas movies all day long!

Jesse finally wandered in the door from work around 6pm, I finally got up and dressed and we spent the night Christmas shopping and going to dinner.

Love me a Saturday off!  Especially during the holiday season!

Saturday, December 4, 2010

Not So Fun

Mesenteric Lymphadenitis refers to the inflammation of the mesenteric lymph nodes.   It causes a clinical presentation that is often difficult to differentiate from acute appendicitis.  The most common cause of meseneteric lymphadenitis is a viral infection.

Now...while Zachary is feeling about 90% better and got to keep his beloved appendix...

It would appear that whatever virus Zachary must have had...has now landed in my body.

Fever, vomiting and some not so pleasant accompanying symptoms for 12 hours and counting.

Blah.

Friday, December 3, 2010

Waiting

My poor little baby, Zachary, has been in All Children's Hospital since last night with severe lower right quadrant pain, profuse vomiting and high fever.  Current diagnosis is Mesenteric Lymphadenitis and "fluid-filled" bowel loops.  Anxiously waiting to see if an appendectomy is in his near future.

No sleep + stress & worry = Migraine


In his drug induced stupor...all he could ask was if he was going to miss Christmas!

Thursday, December 2, 2010

My Must-Haves

I am writing this post for the next blog carnival hosted by The Queen of Optimism.  The topic is Must-Have List:  Supplies, Tools, and Lifestyle Adjustments that Empower Me.

So...here are a few of my favorite things...(Raindrops on roses and whiskers on kittens...)

1.  First and foremost...Brendan & Zachary.  My sons are my absolute world.  I literally am unable to put my feelings for them into words.  My heart bursts with so much love and pride over these little boys.  They make my life worth living and put a smile on my face everyday.  Unfortunately they also make me want to pull my hair out sometimes too...but I take the good with the bad!  Haha.

2.  Jesse.  The most amazing person to ever come into my life.  Without him...I don't think I could survive. He is always there to pick me up when I am down, give me a pep talk and encourages me to keep fighting.  He supports every decision I make 100% (or almost), he is my best friend, my lover and great with my children.  He really is my rock.

3.  Ice.  Ice has become a constant companion of mine.  I love the numbing feeling my ice packs leave me with.

4.  Uggs.  Or as Jesse calls them...Uglies!  I wear them outdoors...I wear them as slippers around the house...I wear them with jeans, skirts, & pj's.  I live in them.  My feet are always tremendously cold and the soft, cozy sheepskin keeps them quite toasty.

5.  Milo & Maisy.  My white, fluffy fur babies who are always there to snuggle with me.

6.  Starbucks.  Gotta have one cup of caffeine every morning to assist with putting some pep into my step and help ward off severe headache pain.

7.  Estee Lauder Doublewear Concealer in light medium.  A must have for under my eyes!!!  There will be days when I put nothing on but a little of that to cover up my dark circles.

8.  Glasses.  I am legally blind without my prescription lenses.  I usually wear my contacts because I cannot go without sunglasses to block out the sun and light.  I recently purchased transition lenses for my glasses...but they don't get near dark enough. 

9.  Laptop.  It's my connection to the outside world, medical info...and to all of my new friends here on blogger!

10.  Moisturizer.  I am SOOO dry!  I think alot of that has to do with my recent UCTD diagnosis.  My face tends to feel like sandpaper.  My legs peel and itch like crazy!  Right now I am using Bioelements Absolute Moisture on my face, and Victoria's Secret Drenched In PINK "warm & cozy" body lotion...(vanilla scent is all I can handle).

11.  Ponytail holder.  Never go anywhere without one!  My hair is long...so no matter how much time it takes me to blow-dry and flat-iron it...it almost always ends up in a ponytail.  I can't stand it in my face!

Well...I am quite sure I have way more must-haves, but I will spare you all.  These are prob my top ones...along with my medication.

I look forward to reading everyone else's lists! <3


Silliness With My Boys




Cancelled Procedure

This morning I was supposed to have my diagnostic medial branch block, aka, facet joint injection at my c1-c2. 

Well...I cancelled.

With the holidays fast approaching...I just decided I had to wait.

Financially...it would've cut into my shopping budget to pay the $400 co-pay...Physically...I would be down and out for awile...and I just have too much to get done...and Emotionally...it was STRESSING me out!  I am still unsure if it's the right thing for me to do. 

So...I put it all on hold til after the holidays.

Now to rely on rest, relaxation, medication and ice packs as much as possible for the next month!

Wednesday, December 1, 2010

Donations From the Heart

As I have mentioned before, several months ago, I became a part of our hospital's Perinatal Loss Program.  After I attended a conference on the subject, I realized our stock of items was just not what it should be.  I took it upon myself to contact organizations to see if they would donate items to our program, specifically burial gowns for our sweet intrauterine fetal demise's and stillborn babies.

That's how it started anyway.

Not only have I received literally hundreds of burial gowns, I have received micro preemie diapers, hair lock boxes, hats, booties, blankets, rings, a brand new digital camera and printing station for pictures, etc...etc...the list goes on.

Above is a small sample of gowns I received from the "Mary Madeline Project."  It is an organization that makes gorgeous burial gowns for babies of all sizes from donated wedding gowns.

I cannot describe the gratitude and thanks to these volunteers as I am inundated daily with packages of items.

Now...we have SO much stuff...I don't know what to do with it all.  Somehow I would love to "pay it forward."  Thank goodness for the fact that it would take us many years to go through our new supply. 

Praying for lots of healthy pregnancies and babies in the future!

Monday, November 29, 2010

Not So Thankful Today

As I read through everyone else's blog posts and facebook comments, I am kind of thinking..."What's wrong with me?"

Everyone is writing about how thankful they are this season for this or for that.

I don't feel that way.

I feel bitter right now. 

I feel like shit nearly everyday...and I am not thankful.

I know I sound selfish.  I know there are millions of others out there in the world suffering and starving and unable to enjoy their families.  But I cannot help it.

I have tried to make a list of all the things I am grateful for, like so many of you did over the holiday, but everytime I write it, I feel like a phony and erase it.  Because deep down I feel like having a pity party for myself and want to throw a temper tantrum like a three year old.

Thursday, November 25, 2010

Happy Turkey Day!


Our attempt at a "Family Photo"


All the kiddies

Oy...bright sun, less than amused!

Milo & Maisy insisted on driving to Grandma's for Thanksgiving dinner!

Wednesday, November 24, 2010

So Sad

Back in 2008, my father had emergency back surgery, which has subsequently left him with chronic lower back pain and permanent nerve damage.  I took him to see a new Pain Management Specialist today...and I am JEALOUS!

Totally green with envy...because next week my dad is scheduling to have a trial Spinal Cord Stimulator placed!

Of course, regardless of the fact that it was my dad's doctors's appointment, I immediately asked if he also placed Occipital Nerve Stimulators.

The answer was a big "NO".

BUMMER!!!

Thursday, November 18, 2010

Medial Branch Blocks Round 2

I had an appointment with Dr. B. (pain management specialist) yesterday.  It was just a routine follow up, however we scheduled 2 more medial branch blocks at the c-1 and c-2 levels for December 2nd and December 9th. If those are successful, I may proceed with more Radiofrequency Lesioning.

I have no idea if I am making the right desicion, due to the fact that the previous RFL at c-3 to c-7 failed, but I feel compelled to try again.

It is particulary difficult when my family, friends and physicians all have such differing opinions.

There is just something about Dr. B. that I trust. 

...and I know that pumping myself full of anti-depressants and beta-blockers isn't doing squat for my pain.

Click on the link below to learn more about this procedure.

http://www.valleyambulatory.com/images/chen/Cervical%20Medical%20Branch%20Block1007.pdf

My New Favorite Song

Monday, November 8, 2010

Neuro Update

Jesse took me to see Dr. K. this morning.  It was my follow-up appt for my series of Occipital Nerve Blocks.  As soon as he walked into the room and asked how I was feeling, I burst into tears.  I was afraid to tell him the treatment wasn't successful.  I feared he would throw the "self-defeating attitude" line at me again.  I knew the blocks wouldn't work as I have had them numerous times before...which led to the RFL...which didn't work.  Anyway, he was more sympathetic than I was going to give him credit for.  He wants me to continue the Prozac,  is adding Savella for my occipital nerve and left sided facial nerve pain, and is still adament I stay away from pain medication.  Ha.  I came home and took 2 fioricet, a soma & phenergan.  Some might say I am being non-compliant.  I say I am being somewhat proactive.  I am tired of hurting while washing & brushing my hair, applying make-up, being touched, and vomiting.  It is NOT normal for God's sake!  People don't vomit on a weekly basis because their head is pounding so badly it's difficult to be upright. 

So my current/updated POC:

Prozac 80mg daily
Savella titrate to 100mg daily
Bystolic 2.5mg daily

Ice packs & massage therapy

What meds do you all take???  Is there anything I haven't tried???


Saturday, November 6, 2010

25 Adjectives I Would Use to Describe Myself....

I stole this idea from "Oh My Aches & Pains".  So here goes...

1.  Emotional
2. Fatigued
3. Grateful
4.  Ambitious
5.  Daring
6.  Motivated
7.  Passionate
8.  Enthusiastic
9.  Loud
10. Caring
11. Understanding
12.  Tall
13. Skinny
14.  Moody
15.  Crafty
16.  Clean
17. Defeated
18. Silly
19. Embarassed
20. Envious
21. Knowledgeable
22. Outgoing
23. Broken
24. Helpful
25. Casual

Such a conflicting list!   Guess it depends on the day and on my mood! =)

Wednesday, November 3, 2010

Loss of a Baby

*A little bit about work...I abided by HIPPA regulations and no specific information or names have been used.*


"The leaf with a teardrop reflects both intense suffering of loss and hope for the future.  Though fallen; the leaf maintains it's vitality symbolizing hope.  It cradles the teardrop with it's upturned edges creating a sense of comfort.  As seasons change, so do feelings.   Just as there is winter and spring, there is sadness and hope."

...This is what hangs on the door's of patient's who have lost a baby, whether it be miscarriage or stillborn.  This past weekend, I cared for a family who's baby was born sleeping.  Unfortunately, the mother also had some serious medical issues that required diagnostic testing following her delivery.  Wouldn't you know it...the technician came bounding through the door, cheerfully congratulating the new parents on the birth of their new son.  My heart sank.  I then proceeded to nudge the technician all the while shaking my head "no" and mouthing the words "their baby died."  Obviously, she did not realize this and never intended to bring my patient to more sobbing tears.

Well...not only did this happen once...it happened AGAIN!  When I finally was able to order my patient a meal tray, the dietary staff came bounding in with the same cheerful enthusiasm, congratulating my patient and her husband on their new baby!  I wanted to crawl under a rock...and sob with them.

I know the heartache of loosing a baby.  I lost two.  One which I delivered prematurely at home, the other, under anesthesia via a D&C before the birth of my second son. 

While all of the stories surrounding the loss of a baby are different, I feel that the emotions are similar.  Which are summed up in the quote under the leaf.  It's the loss of the future, and all the hopes and dreams we had for that child.

After realizing that the majority of our hospital staff were unaware of what the sign on the door's even meant, I took matters into my own hands.  I decided to write an article for our hospital newsletter, educating employees throughout other units just what these signs meant and to please use discretion and sensitivity when encountering these patients.

I thought it was going to be a fairly simple task.  I mean...how difficut could it be to tell people what a simple purple card with a teardrop and a leaf means???  Well it was way harder than I thought.  First off...while I am somewhat comfortable speaking of infant death because of what I have dealt with personally and professionally, alot of people aren't.  It's very difficult not to be blunt, or offend someone.  Also, I needed to take people's education levels into consideration.  I had to keep it simple, yet intelligent enough not to sound like an idiot.  I just hope I got my point across and saved some mother's in the future from going through the same experience as my patient did last weekend.

Back in the Day

I long for those days when I used to wake up...

the sun was shining...

the cool air was blowing...

coffee was brewing...

and I'd jump in the shower with boundless energy.  I'd pick out the perfect outfit and accessories to wear.  I'd blow-dry and straighten my hair.  I'd apply my make-up flawlessly.  I'd wake up my babies, change and feed them.  We'd plan a day of shopping or going on playdates at the park.  The biggest things on my to-do list were to make dinner and go to random dentist or pediatrician appointments.

Boy...has life changed.

Monday, November 1, 2010

Fur Babies

The other loves of my life, my fur babies, Milo & Maisy!

Sunday, October 31, 2010

Trick or Treat...




Happy Halloween...Love: Jesse, Jessica, Brendan & Zachary <3

Saturday, October 30, 2010

Labor of Love

While I tend to dread the thought of going to work...I truly love my job.  It's not the work I dread, it's the 12+ hour shifts that kill me.  But, when that shift is over, and I think of the day and what I have gotten to be apart of, good & bad, I am utterly amazed and grateful. Today, in the span of 13 hours, I witnessed little lives come into this world...both alive and well...and as little angels...only to be a part of their families in body for a short time, and in spirit...FOREVER...as well as touching my life and leaving an imprint on my heart. 

Monday, October 25, 2010

Drug Abuse vs. Pain Relief

I was having a bit of an internal struggle with myself today.  Since being hospitalized in the beginning of August, I decided to stop taking a majority of the medications I was on, and made a change to a different neurologist.  Now, I took Dr. K.'s suggestion last week and increased my dosage of preventatives, but my question still remains...What am I to do for the pain?  Right now?  While waiting for so-called (usually ineffective) long-term therapy to kick in? 

The pain in my head seems to be taking a back seat these last few days to the burning, searing, aching to the very core agony that I am feeling in my hips and legs.  I can hardly stand to keep them still.  It's as if there are electric currents running through my bones.  My face is so tight and dry...I feel as if my skin is being stretched to its limit even just opening my mouth.  My lips are sore and cracking, and my cheeks feel like sandpaper.  My left ribcage, or rather right under it is beyond tender to the touch, making breathing deeply or laughing painful.  Is it pericardial or pleural effusions worsening???

I often think these symptoms, along with my chronic, intractable headaches have got to be somehow related.  As well as the history of fluid surrounding my internal organs and elevated rheum factor and sed rate.  Surely I cannot be plagued by more than one ailment.  Although, the sensible part of me...the college educated part of me knows that more often than not, chronic daily headache and migraine is coexistent with autoimmune disorders and other chronic pain conditions.  *BIG SIGH*

So this all brings me to my next point...today...I said FUCK it.  Fuck dealing with this agony and faking my way through it.  I popped 2 pain pills and stayed in bed all day.  And I realized something...I realized I should not have to feel guilty or defend myself for controllong my pain.  If that means taking narcotics, I will take narcotics.  I am not a drug addict, and I don't abuse them.  I have a valid reason for taking narcotics...I am in pain.  I think I will tell that to Dr. K. the next time I see him...as I am asking him to refill my pain pill prescription!

What's Good Today

What's Good Today:
Pumpkin Spice Latte...YUM!


 

Saturday, October 23, 2010

Happy Birthday, Brendan

12 years ago yesterday, I gave birth to an 8lb 8oz little boy, whom I named Brendan Michael.  He has exceeded my expectations as a son and taught me so much.  I was a very young mother, age 21, when I had him.  While all my friends were away at college and out partying, I was home, breastfeeding an infant and changing diapers.  While I wasn't planning on becoming pregnant at such a young age, I wouldn't change a thing.  Brendan and I have practically grown up together.  We are the best of buds.  It is because of him that I went back to college and have strived to be successful in my life.  Not only do I wish to provide my sons with all that is possible...I also want to teach them the importance of education, hard work and dedication.  Brendan is sweet, loving and extremely understanding.  When I am ill and bedridden with pain, he is the first to get me a drink, or cover me with a blanket, or get me an icepack.  At 12, one would think a boy would be moody and standoffish...not my Brendan.  He still holds my hand, cuddles with me and even allows me to hug and kiss him in front of school...even if he is embarassed, he humors me.  He is an excellent big brother to Zachary.  He is very patient and tolerable...even when Zachary is being pesky and taking his stuff.  He comforts his brother if he is scared...and while I am away and they are at daddy's for the weekend, is sure to be a little man and take care of his brother.  He is in his first year at middle school and I couldn't be bursting with any more pride than I already am.  He is so far getting straight A's (except in Advanced Math...) and is making numerous new friends.  He enjoys art, surfing and running and hopes to join the middle school track team.  He is also the "class clown"...always joking and trying to play tricks on people...especially me.  So this post is to say I LOVE YOU, BRENDAN more than life itself.  One never knows true love until you have a child...whichever way they come into your life (and heart).

Wednesday, October 20, 2010

Yay for Botox

I NEED more botox...and caffeine!
                                                      

Monday, October 18, 2010

No More Injections

Just got the last of my series of Occipital Nerve Blocks.  Today's injection was in my most troublesome spot...so if it's going to help, I should know this round.  Trying to keep positive.  But I am guessing as with most treatments and drugs I have tried, it will poop out without any noticeable effects.

I go to see Dr. F...the new chiropractor, again on Wednesday at 930am.  I think I am a glutton for punishment...or just a sucker.  I fear not going I will be missing the opportunity to find a method that just might work.  Besides...for me, going to get massage, soft tissue manipulation and adjustments may not touch the pain, but are quite relaxing.

Anyone have any feedback on the Diamond Headache Clinic in Chicago?

I am still toying with the idea of going to MHNI as my pain specialist suggested, but Diamond is close to Jesse's sister's house, so I am thinking I might want try them out instead.  We could stay at his sister's for free...at least Jesse can if I end up inpatient, and we'd have a car to drive for free, rather than renting one.  I just don't know Diamond's reputation...or if either place is even worth the travel and expense???

Thursday, October 14, 2010

Balancing Chakras

Attempting to feel better after my tortorous experience with my cervical adjustment that has sent me into a tailspin.  Went and got a light massage and my "chakras balanced."  Grasping at straws here...grasping at straws.

Alternative Methods

Saw a new Chiropractor yesterday.  He did some adjustments to my neck...which I was a little skeptical of, but allowed him to do anyway.  I have this unrealistic fear of neck adjustments causing a vertebral artery dissection and me dying a slow painful death.  So of course, when the pain set in last night...I told Jesse..."If I die, make sure they look for VAD on my autopsy."  Yup...I'm a little psycho.  So my take on this chiro and massage thing...I think I am gonna feel worse before I feel better.

Monday, October 11, 2010

Chasing a Bone

Do you ever feel like when you are trying to find pain relief, you are like a dog chasing a bone?  That's kinda how I feel.  Or like a dog chasing my own tail.  Constantly going in circles.  I find myself chasing after every theory that offers relief from chronic headache.  And...to no avail.  It is a constant roller-coaster ride, or like I said, going in circles and it never stops until you are so exhausted and dizzy from constantly pushing through the pain.  I felt good for awhile there, but this week has proven to me that nothing lasts forever...including pain free days.  My neuro said to me this morning as he was shoving needles into the back of my skull that I have a "self-defeating" attitude.  I try.  I really do.  I go into every new treatment with optimism, but the honeymoon phase always fades away.  This new guy is completely against me taking any narcotics of any kind.  This week I have been sneaking fioricet...lortab...whatever leftover drugs I have in my medicine cabinets from other doctors I've been to.  I just don't understand what he wants me to do in those moments where the squeezing inside my brain or the knife-stabbing pains through the left side of my head are so bad that I don't even want to lift my head up from the pillow, or turn on any lights or have any sounds around me....let alone work 12 hr shifts laboring mamma's to be and delivering screaming babies...and try to be a good, productive mother for my sons.  It's so easy for the doctor's to tell you what to do...and believe me, I know what is good and right for me...I have a medical background for crying out loud...but in those times of desperation...popping a pill is all I know to do.  I meditate, stretch, ice my head...but I can't lay around all day.  I end up putting on a happy smile and faking my way through most days.  So, this week...I am increasing my preventatives per Dr. K.'s advice, going to see a new chiropractor on Wed. am and seeing my massage therapist on Thurs. am...and faking my way through everything else.  Possibly with some pills on board, doctor recommened or not!

Thursday, September 30, 2010

Love-Hate Relationship...

...that's what I have with massage.

A Love-Hate Relationship.

I finally went today for a massage after a couple of months off.  Ok...it hurt.  Like...really hurt.  But it was like a "hurt so good" hurt.  Although, I must admit, at times, it was truly agonizing.  It just made me realize how tight my muscles really were.  So...I plan on torturing myself lots more.  I set up appointments for every 2 weeks.  I am back to trying the more holistic approach.  I always go back and forth...back and forth.  Western medicine...Eastern medicine.  Just searching for anything that works.  I think my next step is a Chiropracter...again.  My massage therapist said my jaw is completely misaligned.  Which I already knew and have ignored that fact.  But maybe some kind of jaw adjustment will help. 

Right now I am in the "honeymoon" phase with my new neurologist.  Maybe what we are doing will last this time.  I am pessimistic though.  Nothing ever lasts.  But you know when you first go to a new dr. and the  treatment seems to work for awhile?  That's the honeymoon phase.  What I seem to be in right now.

I have had a few headache free days over the past couple weeks.  Usually the pain is pretty unrelenting, so this is good.

Unfortunately my intense "body work" this afternoon sparked a lovely headache and some nausea.  All those toxins being released and spread throughout my body is making me not feel so well.  But...in the long run, I think it will be worth it!

Sunday, September 19, 2010

Invisible Illness Week 2010


In recognition of Invisible Illness Week:

1. The illness I live with is:  Chronic Headache and Occipital Neuralgia (I still am unsure of exactly what kind of Headache I suffer from).  Possibly something autoimmune.  Still investigating!

2. I was diagnosed with it in the year: 2003

3. But I had symptoms since:  I suffered my first Migraine with Aura in 2003 during the pregnancy of my second son.  My Headache became chronic 2 years ago.  My rhematoid factor has been positive since 2008.

4. The biggest adjustment I’ve had to make is:  Socialization.  I have become quite isolated.

5. Most people assume:  That the more I do, the more I'll want to do.  What people don't realize is the more I do, the more pain I am in, which leaves me even more drained.

6. The hardest part about mornings is:  Getting up.  I have severe muscle spasms and stiffness, especially in the mornings.

7. My favorite medical TV show is:  Mystery Diagnosis.  I watch it hoping I will see someone with the same symptoms as me!

8. A gadget I couldn’t live without is: My cell phone.

9. The hardest part about nights is:  Staying asleep.

10. Each day I take __ pills & vitamins:  Depends on the day.  Daily I take 3 preventatives and 3 supplements.  Some days I take anti-inflammatories and rescue meds too.  Overall...too many meds!  I hate it and I am trying to eliminate some!

11. Regarding alternative treatments:  I am a huge fan...especially of massage.  I am about to try acupuncture again.

12. If I had to choose between an invisible illness or visible I would choose:  Neither!  But if I had to chose, I'd say invisible.  I am too vain for a visible illness!

13. Regarding working and career:  I still work full time in my career of choice, however it's a huge struggle.  I have put my aspirations of getting my Master's degree on hold.

14. People would be surprised to know:  That I am in pain EVERY day.

15. The hardest thing to accept about my new reality has been:  Not being able to do everything I want to do.  I need alot of downtime.

16. Something I never thought I could do with my illness that I did was:  Stay at my job. 

17. The commercials about my illness:  Is a joke!  Everyone who suffers from the pain I do knows that Excedrin Migraine is like eating a tic tac!

18. Something I really miss doing since I was diagnosed is:  Going out and having fun!

19. It was really hard to have to give up:  My social life.

20. A new hobby I have taken up since my diagnosis is:  Blogging!

21. If I could have one day of feeling normal again, I would:  Either go out dancing or go to an amusement park and actually ride the rides!

22. My illness has taught me:  Alot!  Understanding, compassion, limitations, strength...

23. One thing people say that gets under my skin is:  Take a tylenol, or take a hot bath, or exercise more, or sleep more, or eat healthier....etc...etc...etc. People I have tried it all, and if it were that simple don't you think I'd already be doing it!!!

24. But I love it when people:  Acknowledge the fact that what I suffer from is more than just an ordinary headache.

25. My favorite motto, scripture, quote that gets me through tough times is:  One day at a time.

26. When someone is diagnosed I’d like to tell them:   Honestly???  Oh shit...that sucks!  Good luck finding a competant doctor and some relief.  That's probably not the right answer, huh???

27. Something that has surprised me about living with an illness is:  I have to go with Steph from Headwise on this one...my ability to adapt.

28. The nicest thing someone did for me when I wasn’t feeling well was:  There are so many!  My boyfriend has been a godsend.  There isn't anything he would'nt or has'nt done for me.

29. I’m involved with Invisible Illness Week because:  I want people to know there are alot of us out there!

30. The fact that you read this list makes me feel:  Warm & fuzzy! =)

Thursday, September 16, 2010

Short & Sweet

I am going to keep this post short and sweet, as I am having a not-so-good head day. Although, this new Brookstone shoulder pillow massager thing I bought in Wisconsin is helping a little...along with drugs and ice packs of course.  Anyways, I went to see a new neurologist (Dr. K.) today... and he does in fact seem to be a "headache specialist".  He seems to know his stuff.  Of course, he is completely changing my current plan of care...which is good, because it's not working, but also frustrating because I will most likely be withdrawling again and having to get used to new meds.  Unfortunately, he also told me the RFL was a complete waste.  Which I kind of already knew too.

So new Plan of Care:
-Prozac 40mg daily...this kind of scares me!  But he says he's had great success with it and migraine prevention.  Anyone else ever tried it???
-Meclizine 25mg daily...for my vertigo
-Bystolic 2.5mg daily

He is all about the "prevention" aspect.  He wants me to stop all my other meds at this time, except my Sumavel injection as needed and Phenergan as needed. 

I am also going to get Depo-Medrol injections the next 4 Mondays.  I have had a ton of Occipital Nerve Blocks before...but we'll see!

So as of now...I will be down to only 3 pills a day. 

I don't know how it's going to be not taking all my other pills I'm used to taking...but it's worth a shot!

Wednesday, September 15, 2010

Need a vacation from my vacation!

I have been quite busy since I last wrote.  Jesse and I flew to Wisconsin with his parents last Wednesday.  We went up for a surprise 60th birthday party for his uncle.  As nervous as I get flying, I still love to do it...mainly because I know getting on a plane means I'm going on a vacation and I can forget about reality and responsibility for a while.  However, I usually need a vacation from my vacations.  We spent everyday shopping and visiting family members.  Shopping is very high on my list of priorities...but we did SOOO much walking!  We came home Sunday night around midnight.  I picked up my boys Monday and spent quality time with them, then worked a 12+ hour shift yesterday.  Basically today...I can hardly function.  I am exhausted and my head has been on the fritz for days now.

I decided to finally make an appointment with a new neurologist.  Supposedly a "headache specialist."  I am wary of that title though, as alot of neuros claim to be "headache specialists" and really don't know squat!  But, I'm keeping my fingers (and toes) crossed.  I go tomorrow at 10am. I also received a letter from Aetna today stating that HCA hospitals are no longer in-network.  My last 2 hospitalizations were at an HCA hospital as that is the only place my current neuro has priveledges.  Good thing I am making a change.  Although, I wasn't sure it was going to be a permanent thing...now it might have to be!

Monday, September 6, 2010

One Lovely Blog Award


Thank you, Jamie at Chronic Migraine Warrior, for passing on this "lovely" award to me.  I appreciate all of you who read my blog and who continue to support me through my journey of figuring out my head, and for all of your words of wisdom! =)

Here are the rules of accepting this award:

-Accept the award and post it to your blog with the name of the person who has granted the award and his or her blog link.

-Pass the award to 15 other blogs that you've newly discovered (if possible).

-Remember to contact the bloggers to let them know they have been chosen for this award.

Here are some of the blogs I have chosen to pass this award on to...

1. 10 centimeters and beyond
2. the tramadol diaries
3. Rudy's Beat
4. The Fibromyalgia Experiment
5. Dreams at Stake
6. Overflowing Brain
7. Mom Migraine
8. War on Headaches
9. Single Infertile Female: Now What?

So I guess I cheated a little...I only chose 9.  It's not because I couldn't come up with 15 fabulous blogs, but because I wanted to chose blogs that others didn't already pass this award onto.  If you go to my blog list...you can see all the blogs I follow and read faithfully!

Friday, September 3, 2010

My Genetic Replica

I am currently reading this book called "Identical Strangers".  It's about a set of identical twin girls, separated at birth and adopted to different families.  At the age of 35, they find out about each other and meet.  I am loving all the little factoids about twins and the theories of nurture vs. nature.  Being an identical twin, I just kind of thought of my sister as "just" a sibling and never really thought too much about it.  Obviously in college and all my Science & Psychology classes I learned some twin facts, but now as I read this book, I am truly fascinated.  I am realizing I am quite special!  Haha.

First before I delve into my main question to you guys out there...I'd like to tell you a little about my sis and I and how we came to be...

My parents married young, at the ages of 18 & 21.  We were conceived on their honeymoon.  That's their story anyways! =) Well my mother felt as if she was getting way too big...way too fast.  She states the doctors all just kept telling her she was having "one big healthy boy".  In the 70's they did not do routine ultrasounds, so she never had one despite her concerns.  In fact, the doctors told her to stop eating so much and put her on a diet!  And guess how much weight she gained...25 lbs.  With twins!  And they put my petite mother on a diet for being too big.  Anyways, at 36 weeks gestation, my parents were standing in our nursery, admiring the room that was about to be filled by "one big healthy boy", when her water broke.  After a night of labor...I was born at 10:01 am.  So the doctor then tells my mother to bear down to deliver the placenta...and then..."OMG...it's another head!"  My mom said all she could do was scream..."I told you...I told you!"  And just as if out of a movie, my poor dad passed out cold on the floor! So out came my sister at 10:04 am.  We both came into the world weighing and measuring the exact same. 5 lbs. 5 oz. and 17 inches long.  Now since we obviously were not "one big healthy boy", we were two tiny, little girls...we had no names.  We were "Twin A" and "Twin B" for 3 days.  Finally...we became Jessica Kelly and Jennifer Leigh.

The interesting thing about Jen and I is that we are also what they call "mirror- image" twins, who account for 25% of identical twins.  Also known as reversed asymmetrical twins, mirror-image twins occur when the fertilized egg splits later than 7 days after conception.  In most cases, the reverse asymmetry presents itself in small, obvious ways.  Such as I am left handed and Jen is right handed.  However, some identical twins may also show reversals in dental features, fingerprints and facial features.  In the most dramatic form, the internal organs of one twin are reversed, with the heart being on the right side of the body. 

Identical (monozygotic) twins are clones of nature, each descended from a symmetrical splitting of a single fertilized egg into cells that contain the identical sequence of billions of even tinier DNA molecules.  Identical twins share 100% of their genes. 

That being said, my question, and the question of most people I know is...if Jen and I are exact genetic replicas of each other, why is it that I suffer from this debilitating neurological disease and she doesn't???

Now to somewhat anwer my own question...I did some research.  Identical twins are very likely to share Migraine Disease indicating a strong genetic component, however, the disease is clearly not caused by a single genetic mutation; rather a person becomes susceptible by inheriting mutations in a number of genes, each probably making a small contribution.  Nongenetic components operate as well, because even identical twins are "discordant" for the disorder; sometimes one twin will suffer from Migraine, and the other will not.

Interesting.

I am extremely thankful that my best friend, my "clone", does not suffer from the hell of this disease...but...WHY am I the one who got it?!?!?


Thursday, September 2, 2010

Overwhelmed

Life is overwhelming.  Simple as that.  I don't know how else to describe this feeling I have everyday.  It's quite ridiculous.  I don't do more than most other normal people.  Yet...I feel so bogged down with just the basic activities of daily living.  I haven't even been able to muster the strength to log onto my computer.  All I wanna do is lay down.  I don't feel depressed, just sooo tired all day...everyday.  Even though I long to sleep 24 hours a day...I don't.  I have managed to be very productive.  More so than I have been in months.  Maybe that's why I feel wiped out.  I tried to take things slowly...but in my life, that's not an option.  Gotta jump back in...full force.  I am now back to full time status at work.  Even though that means only working 3 days a week...they are 12+ hours a day of constantly being on my feet and running around like a chicken with my head cut off!  Since I have been back, I have been "baby nurse" every shift.  Which consists of going to every single delivery and "catching" all the babies and doing all their care.  While that's my favorite part of my job...it gets super busy as baby nurse!  I have had 8 babies a day the last 2 shifts I've worked.  It's not too bad if the babies come out good...it's when they come out bad that it gets hectic.  Then I fall behind.  I am very systematic and organized and one little blip throws me out of wack.  Although, while I am at work, I handle mostly every situation with confidence and am able to shift gears quite rapidly...it's when I get home that I crash.  I guess every nurse can attest to that.

In addition...I am also back to being part of our Perinatal Loss Program.  And tonight...I run my first support group on my own!  Yikes!  When I was asked, I just couldn't say no!  Having had 2 losses of my own, I was compelled to be a part of this team.  I feel I have a special connection with these mothers who lose their babies and as morbid as it may sound, I enjoy taking care of these quiet little angels and giving them the best care they could possibly have for their short time here on earth.  Those few hours those families have with their stillborn babies are the only moments they will ever experience with their son or daughter.  We spend precious moments bathing the babies, taking photos, clipping locks of hair, footprinting them and watching as the parents cry and hug and kiss their sweet angels.  Its heartbreaking, but I know we are doing a good thing and providing a special service to these families.

More stress has also come my way since the boys have gone back to school.  I spend a minimum of an hour each afternoon sitting in car rider lines picking them up from school.  I just read, so I guess it's not that awful.  It's just getting my ass motivated to get out of the house!  Another thing...the homework!  Oh the drama of homework!  And I say drama...because inevitably someone always ends up yelling and in tears while doing homework...and it's usually me!  I claim to have no patience what-so-ever.  Funny since I am a mother and a nurse!  Last night I helped Brendan with his homework for 2 1/2 hrs!  He is in middle school for goodness sake!  He gets more homework than I did in college!  He is also in advanced math...I don't remember half that stuff!  So while he is learning...so am I.

On the headache front, I have been ok.  So far this week I am good.  Only mild symptoms.  I did practically knock myself out at work on Tuesday though.  Not so good.  I stood up from washing my hands in a patients' room and banged my head on the corner of the television.  I instantly saw complete whiteness (weird it wasn't darkness) and fell backwards into the arms of one of my co-workers.  So needless to say, I was a little dazed and confused after that.  Other than a big knot on my head, I am fine now. 

While this week has been good...last week sucked.  When I look at my headache log, last week was all moderate to severe symptoms.  That being said, I did make the first step and called Michigan Head Pain and Neurological Institute (MHNI).  I am waiting for a nurse to call back to get my medical history, then I will make an appointment to go.  I cannot live my life so up and down.  A big trigger for me is stress and anxiety...and I don't foresee my life slowing down anytime soon...so I need help.  Dr. B. mentioned going in and lesioning my c-1 and c-2 and has also mentioned an occipital nerve stimulator, but I'd like to see if I can go to MHNI and see what they say.

On this so-called CTD front, I think I might be having some kind of flare-up.  My face is so tight, dry, itchy and red...I can't stand it!  As a former aesthetician, I take impeccable care of my skin.  I have never experienced this before and it is driving me nuts!  My tremors are still there and annoying, and my thighs are so achey down to the bone, but I am dealing with it.  As all of us in pain have to do.


Thursday, August 19, 2010

Oh Lazy Day

I am sitting here, drinking coffee, reading blogs...totally unable to motivate myself.  I woke up feeling exhausted after a rather fitful night of sleep (I should say, no sleep).  My legs have really been bothering me this week.  I don't know if it's related to this somewhat vague diagnosis of Undifferentiated Connective Tissue Disease or what.  I kind of took that diagnosis and threw it out the window.  Mainly just concentrating on my head troubles.  Maybe there is something to be said for this CTD.  My legs just ache down to the bone.  I feel a need to have constant pressure on them...or move them.  Last night while watching a movie with my boys, I made Brendan (my oldest) lay across my legs.  Then in bed, made Jesse do the same.  It was either do that, or move & kick all night long. Which I did anyway.  Jesse literally found me laying under our mattress one night to get relief.  I crave pressure. 

My tremors in my hands are getting so bad, I am noticing difficulty writing.  I shake doing any fine motor skill.  I was scrubbing in on a cesarean section once and the doc told me to lay off the coffee!  Well, I shake & twitch without coffee.  I hate to admit, I have been heavily relying on xanax to help.  Scares me because the more I take...the more I need to relax me.  I do not know if the tremors are related to my other ailments or genetic.  Probably both.  My grandfather had essential tremors and my father has been on Parkinson's disease medications for his tremors for years.  Maybe that's whats next for me.  =(

I saw Dr. B yesterday.  It was my 6 week follow up for my Radiofrequency Lesioning.  We both were basically in agreement that it did not completely help my head.  However, I do seem to be feeling better this week in that aspect.  But...between the RFL and my Botox kicking in...I feel like I need a neck brace!  It's taking all my energy just to keep my head upright.  I lean on things as much as possible.  So now I am having some intense shoulder and neck muscle spasms as a result.  Oh joy!  It is ALWAYS something! (boo hoo).

Dr. B's very strong recommendation...send me to the Michigan Headache & Neurological Institute in Ann Arbor.  He has some pull there, and says they're one of the best.  I gotta do some research, then decide.  So we'll see...

But for now...it's a lazy day for me!  Too tired & sore to do anything.  Then of course...the guilt sets in.  But not today...no guilt.  I was uplifted by a post I just read from "The Tramadol Diaries."  So off to "Eat, Love and Pray" today!

Monday, August 16, 2010

Another Good Day





Spent another good day at surf camp with the boys yesterday.  I am thrilled to say, I have been headache free for 2 days.  I don't remember the last time this has happened!!!

Wednesday, August 11, 2010

Back to "Normal" Living

Yesterday I finally went back to work.  I was nervous the night before and when I woke.  Scared I couldn't get through a 12 hr day with no pain.  Once I got there though, I was ok.  I work with such a supportive group of people, I knew I could do it.  Plus Jesse had told me to call him immediately if I felt I couldn't get through the day and not to force myself.  He even said if you have to quit..."I'll get a second job."  Obviously I don't want to quit my job, but having the knowledge that I could walk away if I absolutely needed to was comforting in a weird way.  We were pretty busy at work so all the running around and catching babies left little time for me to acknowledge my head.  I guess working is a good thing for me.  When I am home, I tend to notice every little twinge of pain and dwell on it.  I have realized over the past 3 mths that I have no coping skills of my own.  I may need to get help with that.  As a nurse, I can teach my patients copings skills, but I can't wrap my head around it when it comes to my own problem.  So after being at work for over 12 hrs...it's an understatement to say I was exhausted.  I literally felt sick from fatigue driving home.  But I am taking it slowly, only working 2 days a week to re-adjust.  And I remained headache free for most of the day...only needing to drink some caffiene and take an 800mg motrin.

I just came back from an appt. with Dr. E.  It went well.  Now I kind of feel like I don't want to go see another Specialist at this point.  We had a really good talk and made a new plan of action.  Plus, he said if we don't progress, he is sending me to Tampa to the "House" of migraines.  I did actually see the dr. he is referring to once, but she agreed with his plan of care, so I never went back.  I also got a round of Botox while I was there.  Still not quite sure if it really helps, but my insurance covers it, the dr. believes in it...and it leaves me wrinkle free so I keep doing it.  In a few minutes I am going to take a Sumatriptan injection with a Xanax to try and banish this headache that is now starting to creep in.

Monday, August 9, 2010

New Doctor & Going Back to Work!

I had my appointment this morning with my new primary care physician, Dr. W.  I really liked her.  Thank goodness!  I was so hoping I would.  She was extremely thorough with me...more so than any other PCP has ever been.  She did a complete head to toe physical and went over my medical history extensively.  Even at the end when I started sobbing like a lunatic, she handed me some tissues and was very sweet.  She gave me a referral to a new Migraine Specialist.  I don't necessarily want to "fire" Dr. E. (yet, anyways), but I do want some other opinions.  Dr. W. said she'd leave my complicated head up to the neuro's!  Good choice on her part!

So tomorrow is a big day for me.  Back to work after an over 3 month leave of absence.  I am petrified!  I know it's like riding a bike, and I know my job well, but I am still nervous.  I am praying for a no migraine or headache day!  Pretty tall order considering I have one almost everyday.  As long as it is somewhat bearable and I have no vision loss, I think I can do it.  Since being discharged from the hospital I have had a headache most of the time.  There have been times where it has gone away, but come back again.  I am sure most can relate to that!  So today I picked up my new prescription of Sumavel DosePro and just took an "injection" to see if it would help.  Again, I want so badly to be pain free when I wake up at 530am!  Well, first of all...it's such a weird delivery system!  It kinda hurt...and it left a dime size indention in my thigh that bled for 30 minutes!  I hated the feeling the medication gave me, as I do with all triptans, but took an ativan and got through the initial side effects.  Now, I am just itchy all over!  Is that a bad sign?

Sunday, August 8, 2010

The Fight Continues...

Last weekend I had a terrible migraine attack.  Well, when I woke up Monday morning, it was still there.  I had tried all my meds in my cabinet, plus the ones Dr. E. called in for me on Sat.  I did my usual ice routine in the dark.  Nothing was relieving the throbbing, pounding pain.  These headaches tend to feel as if someone is inside my head twisting and banging on my brain while intermittently stabbing it.  Nice and graphic, eh?  I also couldn't seem to get a handle on my blood pressure, even after a double dose of my Corgard.  Obviously pain elevates BP.  Anyway, as soon as I woke up on Monday morning, I called Dr. E's office to see if I could get in and maybe get a shot of Toradol or something to get the pounding to go away.  It had to stop as I needed to return to work on Tuesday!  So they scheduled me to come in at 240pm.  After a hellacious hour wait in the waiting room with bright lights and a blaring tv, I got taken back.  Don't migraine specialists think to make their waiting rooms more suitable for migrainuers?  By this time I was back to wanting to die.  I was crying, feeling so helpless and defeated as always.  Nothing takes this pain away!  I re-explained the events of the entire weekend, the pain, the vomiting, etc.  I also made mention that in 3 weeks I have had a 13 lb weight loss.  I am sure due to meds, pain, vomiting, anxiety, etc.  Well Dr. E. and his ARNP bluntly said..."You look sick."  Well no shit!  So I was sent over to the hospital and admitted (very relunctantly on my end I might add).  For 5 days.  Diagnosis: Status Migrainous, Hypertension and Dehydration.  Finally something was being done.  Even if it was the day before I was to go back to work and "normal living".  So while I was there, I received IV hydration, and a plethora of IV medications such as Potassium, Decadron, DHE, Depakote, Morphine, Zofran, Ativan.  I also finally had a lumbar puncture done.  Although, results were send out, so still pending.  The second to last night I was there, a cardiologist was called in because my HR was dropping to the 40's and some arrhythmia's were showing up on my telemetry monitor.  Go figure.  I had an echocardiogram and everything was stable.  I do have mitral valve prolapse, but have since childhood.  My medications were changed and I was discharged Friday afternoon.  Yesterday I was a freaking basketcase.  I could not stop crying!  I am assuming it was medication related.  I like to think it was anyway and not just me completely falling apart.  Today is a much better day and I am "getting by."  Still had a headache yesterday, not so much today. I am going to see my new primary care physician tomorrow morning and I think I am going to take the step to ask for a referral to a new neurologist.  I need that new set of eyes and ears.  I can't continue on this path.  I am tired of fighting.

Sunday, August 1, 2010

Change is a Comin'

WARNING...long winded post!  Sorry...had alot to say today! =)

I'm not sure if anyone noticed, but I changed my subtitle.  It used to say "Trials and Tribulations of Migraine with Aura, Chronic Daily Headache and Occipital Neuralgia."  Now it just reads "Migraine Disease."  As an RN, Migraine sufferer and Google junkie...I thought I was pretty knowledgeable about all this migraine stuff.  I've listened to doctors, read books, read the internet, listened to friends, read all of your migraine blogs...etc...etc.  One book I hadn't gotten to reading however, was Teri Robert's book, "Living Well with Migraine Disease and Headaches."  I am now reading it on my new Barnes & Nobles Nook that Jesse got me for my birthday.  I am realizing it should have been the first resource I went to when I started having these damn chronic headaches.  I changed my subtitle because, now that I think about it, I am not quite sure what type of Migraine Disease I even have!!!  When I go through the classifications according to IHS, I feel as if I fit into every category!  I have been told by different doctors that I suffer from Basilar Migraine, Migraine with Aura, Transformed Migraine, Ocular Migraine (correctly called Retinal Migraine) and/or Occipital Neuralgia.  All of which have different treatments.  So which is it?  Certainly I can't possibly have all these types!   I also realized from Teri's book that I am using some terminolgy wrong.  As a nurse, that is not exceptable to me!  Although I have to admit, unless you are having a baby or coding, I don't know much of anything else!  So, Teri...if you ever read this post...I will try my best to use correct Migraine terminology!  You have taught me so much so far! =)

So, since I am talking about migraine....I may as well tell you, I had one hell of an attack this weekend.  Maybe one of my worst.  Ok..so I guess the best way to tell you all how it started would be to be quite candid.  Although it is embarassing!  I'll give you the short and sweet version.  I have been experiencing horrible abdominal issues.  I am sure from my meds, although I have always had some issues, even before migraines took over.  On Thurs, after my mom's bday celebration, I had taken some laxatives (maybe too many).  Well, I was up all night with fluid coming out of every orifice.  Nice, eh?  Anyways, as I posted previously, I spent the night on my bathroom floor because I was so sick.  Well around 2am Friday, a terrible headache started to set in.  On Friday night, I thought I was dying.  If I wasn't, I wanted to.  It was at at least a 9 out of 10 on the pain scale.  I could not move an inch without feeling as if my head was going to explode.  I did not want to make an ER trip, so head packed in ice and every medication on board, I finally passed out.  Woke up yesterday, still there.  I was shaking, confused, unsteady...the works.  I took my blood pressure several times and it was continuously elevated.  Like 140's/100's high.  Finally I gave in and called my Neuro.  He called me in some Reglan.  He told me to take 20mg of that with a Benedryl, and to take 40mg of my Corgard.  Ok...I don't know if it was the Reglan or what....I started panicking...feeling like I was crawling out of my skin.  Now I know that happens with IV Regaln...but not sure with PO.  I took another Benedryl and a Xanax and passed out.  Thankfully.  So this morning I guess I am ok.  A little on edge, been on the toilet a few times already with tummy issues, and my head pounding is down to about a 5.  I have to soldier on though...gotta take my munchkins to surf camp.

What confuses me about my headaches is that they don't fit into any typical Migraine classification.  Sometimes I get aura, sometimes I don't.  Sometimes it's visual and olfactory (I tend to smell rubbing alcohol alot), sometimes it's not.  Sometimes it's total left vision blindness, sometimes it's not.  I said before, my left pupil dilates, but now I am not so sure that my left pupil is actually dilating, or that my right pupil is actually constricting.  The most confusing part to me is the pain.  It is never unilateral.  It is always bilateral.  It is a throbbing, pounding, heart beating in my head kind of headache.  It occurs at the back and top of my head.  I often get intermittent sharp, stabbing pains throughout in various places. It's as if the top of my head is going to blow off and my eyes are being pushed out of my eye sockets.  I can't move or bend over.  I always experience nausea and sometimes vomiting.  I sometimes get diarrhea.  I am always phonophobic and most of the times photophobic.  Sometimes my nose runs, sometimes it doesn't.  I always get tired, disoriented and confused, slurred and slow speech when I have a severe attack.  I get pale and cold and numbness and tingling in my lips, sometimes hands.  My daily headaches are not as severe, but same type...although no constant accompanying symptoms. 

Personally, I am thinking I need a lumbar puncture to rule out intracranial hypertention.  But no doctor ever listens to me.  Hence the reason I am going to see a new primary care physician on Aug. 9th.  Then go from there.  Possibly then on to a new Migraine Specialist......

Friday, July 30, 2010

Birthday Fun...and Not So Fun

Well, it's over.  I hate to say FINALLY... but I need to re-coup.  As usual, my body betrayed me.  Tuesday, the 27th, was my 33rd birthday.  Jesse decided after I opened my gift to take me shopping, then out to dinner.  It was great.  I felt ok, but as with almost any kind of exertion, I fought a headache all day.  On Wednesday, my wonderful girlfriends threw me a little birthday beach bash.  We laid at the edge of the water, sipping our "grown-up" punch, watching all the kiddies playing in the ocean.  Soon after...it starting raining!  Like monsoon rain.  Luckily my girls were smart enough to set up a tent.  So we all huddled together on wet, sandy blankets under the tent and ate cupcakes.  Yup, all 13 of us...it was so cozy.  The kids had a blast playing football in the sand during the downpour though.  Really, that's all that matters.  The kids happiness.  It did eventually stop though, and back to clear, blue skies and sweltering heat.  That's Florida for ya.  It's so hot right now, the only way one would even want to be outside is to be in or near the water.  Thank goodness, I have both a pool and the beach nearby.  Last night was the end of the celebrations.  Dinner at my mom's, with the family.  And, if you all remember, I do share a birthday with my sis.  It was nice, although family gatherings definately always throw me into a tizzy!  We are a loud group of people.  By 8pm, I was dying to go home.  I needed that peace and quiet...and darkness and ice packs and medicine!!!  I don't want to live my whole life like a hermit, or a recluse....but EVERYTIME I think I am feeling better to live normally, it bites me in the ass.  I spent the majority of my night on my bathroom floor, sick as hell and in agony.

Monday, July 26, 2010

The Versatile Blogger


I was thrilled the other day when I was reading the "MigrainePuppet" and saw that she had nominated me for this blogger award!  How exciting!  I am so new to this world of blogging, I wasn't sure if people were really even reading my posts (other than the few comments I've received).  I started writing this kind of as a therapy to me, after being inspired by reading other blogs.  I was amazed how many people suffered from migraines and other chronic illnesses and wrote about it.  It's very comforting to know you're not alone.  I was a little skeptical of having other people read my thoughts and learning such personal things about me...but I'm over that! 

So I guess there are rules to follow once one receives this lovely honor...so here goes...

Rule #1:  Thank the person who gave you your award.

To my new blogger/migraine pal, the MigrainePuppet, I thank you very much for this award.  I will try my hardest to come up with new and versatile things to blog about!  So keep reading! =)

Rule #2:  Share seven things about yourself:

1. I have been a labor & delivery nurse for 4 years.  I recently completed the task of obtaining my RNC, which is a specific certification in obstertrics.  I am cross trained in labor, "catching babies", NICU holding, and scrubbing in on cesarean sections.  I am also part of our Perinatal Loss Program.

2. I have 3 siblings.  An identical twin sister, a younger sister and a younger brother.  My mother and all of us girls are RN's.  My twin sister even works on the same unit as I do!

3. I danced for most of my childhood (tap, jazz and ballet).

4.  I wish I could sing!  I sing in the car....but I can't carry a tune to save my life!

5.  I am totally in love with my dogs!  They are both Maltese.  Milo (male) is a year and Maisy (girl) is 10 mths.

6.  I am obsessed with Chelsea Handler!  I love her show, her books and I follow her on Twitter.  I even refer to her by her first name.  She's my "girl crush" I guess.

7.  I am like the paparazzi.  I take pictures ALL the time.  My boys and Jesse get SO annoyed with me!

Rule #3:  Pass the award on to bloggers you think are fantastic:

http://singleinfertilefemale.blogspot.com/
http://keeponsmyelin.blogspot.com/
http://atyourcervix.blogspot.com/
http://headwisewoman.blogspot.com/
http://migraine-ista.blogspot.com/

There are sooo many more I love and read, but those are a few of my favs!

Rule #4:  Contact the bloggers to let them know they've been nominated.

Saturday, July 24, 2010

Aresenal of Weapons


So, I am one of those dumbasses that buys everything on the market that promotes "pain relief."  Here is just a small glimpse of my "aresenal of weapons".  Others are too big to fit on my kitchen table, such as the inversion table I bought last year.  What the hell was I thinking when I bought that?!?  I can't even bend over without my head practically exploding and falling off my shoulders, let alone hang upside down!  But, on the internet, I read it reduced some peoples' migraines, so I had to buy one!  Jesse must have been a Saint in another lifetime to put up with me and my crackhead antics.  Although, he greatly benefits from it daily...so I said..."Happy Valentine's Day, Honey!"  Anyways,  my lovely photo to the left shows some of my items I have come to depend on.  I have my nebulizer (which I can only use when no one is home...all the boys in my house gag when it's on!).  In it I use "Head Aide" essential oil which consists of lavender, spearmint, rosemary, marjoram, basil and vetiver (whatever that is).  I must admit though...It gives me a headache!  Haha.  Go figure.  Almost all scents do.  Should've known better with that one too.  Next up...the device that looks like a set of small red breasts...is my "Still Point Inducer".  While laying down, it rests in your sub-occipital area.  This is one of those things that is a "hurts so good feeling."  Gotta be careful getting up though, I get very dizzy.  Then I have my trusty blue ice pack.  One of many.  By far my favorite headache companion!  There's the overpriced "special headache" pillow (blah blah blah)...that I use, but I think it's too hard, so a softer, comfier pillow goes right on top!  The lovely pink eye mask is my new purchase.  I had an ugly blue one that fit too tight around my sensitive noggin, so I traded it in for a pretty pink brocade and satin one from "Cris Notti".  Let's see...there are also my wax ear plugs I use when the noise is really too much to bear, or when I'm trying to read and Jesse won't turn down the damn t.v.!  Also my yoga dvd's...although P90X yoga is my favorite, these are for those more relaxing times....and then there is my new relaxation CD (which I have yet to listen to) that my Pain Psychologist made for me.  I am seeing her as a request from Dr. B.  Although, she really hasn't taught me anything I don't already know or practice, but we'll see.  I mean I labor women through childbirth for goodness sake...I think I know relaxation techniques!  Geez!

Can't Sleep

Ok...first off...let me just start by saying this blogging thing is annoying the shit out of me right now!  AHHH!  I keep screwing things up.  Perhaps I should'nt be replying to other people's blogs or writing my own post at 1:19am, irritable as hell, in pain and doped up.  I curled up in bed tonight with Jesse and my sweet fur babies (my other munchkins went to daddy's for the weekend) at 8:30pm to watch "The Bounty Hunter" with Jennifer Aniston & Gerard Butler.  I thought for sure I'd fall asleep at least half way through the movie since I had actually gotten out of bed a couple of times today, didn't take a nap, and took my pain and sleeping pills.  Nope...movie ends...and miraculously I'm still WIDE awake.  So I slip on my new satin eye mask, throw my down comforter over my head and close my eyes.  I ended up tossing and turning in misery for 2 hours before I decided to say f-this and got up.  So here I sit, drinking "sleepy time" tea in front of the computer with really not much to say, other than having a little bitch session.  I could let you all know that I seem to be regaining some feeling back in my right neck/upper back area...too bad it's searing nerve pain.  Off to read some more blogs and hopefully not screw up anymore replys...sorry S.I.F.!!! =)-  Sweet dreams...eventually...

Friday, July 23, 2010

Post RFL

All I can say is, one step forward....and two steps back!  (or is it the other way around?)  I am now 3 days post RFL.  Obviously, if you have read my previous post, that first night was HELL.  Yesterday was much, much better!  I had alot of soreness in my neck, as to be expected, but no real head pain.  I stayed in bed most of the day, took my pain medications, and again, surrounded my head and neck frequently in ice packs.  This procedure has produced some strange sensations.  Although, strange sensations is something I am used to.  I am always having some limb go numb or have "pins & needles."  But I no longer have any feeling from the middle of my neck down to the middle of my back.  It's gonna take time to get used to.  I can feel if I have an itch, but can't really feel myself scratching it.  Although deep pressure (like massage), I can feel.  I also feel as if my skin is "crawling."  Bizarre I tell ya. 

So this morning I woke with a strong pounding in my head.  Not so good. =(  It feels full of pressure.  I can't bend or move a certain way or if feels as if my eyes are going to pop out of my eye sockets and the top of my head is going to explode.  This is something that I have experienced frequently over the past 7 years, so I am used to it.  Guess the RFL did nothing to cure that aspect.  I have to be patient though.  It takes 4-6 weeks to get the full benefits of the procedure.  But, as I mentioned to Dr. B. in the first place, I don't see how this procedure will improve my vascular migraines, nor this other pounding headache like I have right now.  But, he tells me one step at a time.  Unfortunately, I am a complicated case (as I've been told by many), that we have to try and "fix" one problem at a time.  So, first the nerve pain, then the others.  Oh and I have so many "others"......

Thursday, July 22, 2010

My Radiofrequency Lesioning

I was petrified going in the morning of my procedure.  Everything I had read about RFL said it was a torturous procedure done while wide awake with a long, painful recovery.  Of course, Dr. B. assured me that was not the case, but I tend to expect the worse and didn't believe a word he said.  I mean...the internet certainly knows more than the drs., right?!?  This would be the reason Jesse keeps threatening to disconnect our internet modem...and banning me from WebMD.  Anyhow, when I got to the surgery center, I was pleasantly surprised to find a lovely anesthesiologist waiting for me, with syringe in hand,  the second I was taken into pre-op.  She was ready to inject my fentanyl before I even had an IV site!  They couldn't get that IV in fast enough as far as I was concerned!  I longed for that relaxing, melting sensation to come over my body as at that moment I was twitching with anxiety and felt like I was jumping out of my skin.  Of course, not being able to have anything by mouth 12 hours before the procedure, I was dehydrated.  It took 3 attempts to get my IV in as my veins kept "blowing".  As a nurse, it was frustrating!  Now, I don't always get IV's right away either, but I know where my good veins are and the nurse wouldn't listen to me.  She jokingly kept saying..."Stop being a nurse and just be the patient"...although I know she really meant it.  So, finally IV in place, fentanyl on board and being wheeled blissfully into operating suite.  I was placed on the table, face down and started panicking once again screaming, "I don't feel sedated enough...don't start yet!"  Then....nothing!  I woke up in a recliner in recovery, completely dressed, sobbing and dry heaving.  I always cry coming out of anesthesia.  Apparantly I was put completely to sleep!  Yay!  (Dr. B. later told me that he does not use the old barbaric method of making the patient stay awake). So after a few sips of ginger ale and some more Zofran, I was set free.  Pain wise, it wasn't unbearable at that point.  Still the good drugs kicking in.  I felt pain only on my left side, right side...nothing.  I got home and right to sleep I went.  The rest of the day went fairly smoothly.  I took my pain meds around the clock and kept ice packs on constantly as ordered.  Then...WHAM!  Almost out of nowhere, I awoke in the evening in what I can only refer to as utter agony.  The pain in the sides of my neck is what I would describe as a deep, burning ache.  It hurt like hell.  My head was pounding so hard, I thought the top of it was going to pop off.  I had sharp stabbing pains shooting through my eyes and ears.  I could do nothing but cry and ask Jesse over and over again why I did this.  My mother's boyfriend (an ER physician) was working and I knew I could go to him for help, but I chose to wait it out.  In my mind I kept thinking "what if I have a spinal headache?" So I took every medication I had in my medicine cabinet, surrounded my head and neck in ice packs, drank some caffeine and laid flat on my back.  Eventually I fell asleep.  I awoke the next afternoon at 1pm to Jesse hovering over me, making sure I was breathing!  He does that quite often.  I am lucky to know I am being looked after and frequently checked on when I am in my medication stupor.

Monday, July 19, 2010

All the Pretty Little Pills


Here's hoping I won't need so many of these after my procedure tomorrow!!!