Worst Night Ever

We drove home from Orlando on Saturday afternoon. I do not do well with car rides if I am not the driver...but I hate to drive, especially on the interstate, so I often find myself in a catch 22. I reclined my seat, propped my head up with a pillow, covered myself with a fuzzy blanket, sported some super dark sunglasses, turned down the radio, begged the boys to keep their voices to a whisper, took some pain and anti-nausea medication, and flipped open a magazine. I find it difficult to read in the car, but also wanted something to distract me. That's why I choose magazines for my car rides...I can just look at all the pretty little pictures and not really read the words. Well we were about 30 minutes into our trip home and the dreaded happened. My vision began getting distorted as if I were looking through a kaleidoscope. That's how it always begins. I tried not to panic, slammed close my magazine, rolled onto my side and tried to go to sleep. I did ok for awhile, then as we were getting closer to Jesse's parents house, to pick up Milo and Maisy...my symptoms worsened. Darkness started creeping into my peripheral vision. It slowly ascended from both sides. That was new for me. Usually my vision in my left eye gets dark from the top corner and decends. I panicked a bit...begging for everyone to keep silent and for Jesse to step on the gas. The rest of the way home was fairly uneventful. I came home, took more meds and jumped into my bed. I was quite pleased when I woke up from my nap that I felt pretty good. I thought I had managed to keep a full blown migraine away. So I got up, did some unpacking, threw some laundry in the washer and went about the rest of my evening. Before bed I noticed a slight throbbing in the top of my head with sharper stabbing pains in my right temporal area. I had Jesse rub my head a little, plopped on an ice pack, popped some meds to help me sleep and nodded off. For the first time in my life, I was awakened from horrific pain. A pounding in my head that was so great it was unbearable. In all of my years I have never experienced a migraine so bad. It truly was a 10 out of a 10 on the numerical pain scale. Now I KNOW what that means. Even after all of my procedures on my head and years of suffering...this was by far the worst. As Jesse was holding a bucket under my chin to catch the projectile vomit that kept spewing out of me...I begged him to take me to the ER. Apparently at one point I even told him I was going to the bathroom to hang myself. I do not remember. I desperately sprayed DHE up my nose several times. At some point, something worked because I fell asleep sitting up. The migraine continued for about 30 hours before any real relief came. I have been having residual head pain since and am contemplating calling my neurologist for a steroid dose pack. I can in all seriousness say I would rather die than go through what I went through Saturday night.

I'm Baaack

So here I am...back to reality. 

Jesse, Brendan, Zachary and I spent the last week in Orlando.  While it wasn't the spectacular, exotic location I was originally hoping to go to...it was still a vacation.

A vacation away from work, house cleaning, bill paying, pain...(or so I hoped).

We started off last Saturday by going to my sister's new house in St. Pete Beach.  We had some drinks, ate too much food, mingled with friends and kayaked off the beach in her backyard. 

We made our way to Orlando that night around 8pm.  The next couple of days were spent by the resort pool, drinking cocktails, going out to eat and shopping.

Monday night we walked through City Walk and saw The Blue Man Group.  The acoustics were phenomenal, but parts of the show were a bit odd.  Even for me...and I have a very open mind.

The most shocking part of the show, however, was when they mentioned ME!  Me and "My Headache".

According to the folks at Blue Man Group...I need to use some guided imagery to cure my aching head.  Imagine my head as a field...and my headache as a cow...NOW KILL THE COW!

Yup...that's what they said.  I still have no clue how they knew any personal information about me.  Maybe this blog?  If so..."Hi guys from Blue Man Group"!

Anyways...I'd love to "kill the cow"!  But will someone please tell me how?

While we did plan on visiting some theme parks in Orlando...we opted not to.  We decided waiting in hot, long lines in the middle of July was not our idea of vacation. 

We walked through Downtown Disney, ate at Rainforest Cafe and T-Rex Cafe and went through all the touristy shops.  My favs being Basin, where I bought a massage bar and Almond Sugar Scrub and The Tea & Spice Exchange where I bought some loose tea and salt.  One can never have too much salt!  Or butter for that matter!

A new store at Downtown Disney is Little Miss Matched.  So sad I do not have a little girl!  But I did purchase some cute socks for myself that will go perfectly with my pastel scrubs!  Or maybe not so perfectly...as they are "mismatched".

Thursday we went to Seaworld's water park, Aquatica.  Jesse's parents, nephew, my sister and her family all came up and joined us.  It was a great day. We were all fried in every sense of the word later that night!  Burnt and utterly exhausted!  But it was a blast and well worth it.

So my vacation was overall relaxing.  I was thrilled to be able to spend uninterrupted time with my boys, eat lots of yummy food, indulge in one too many mixed drinks and haul in a ridiculous amount of new loot from my shopping binges.

Now it is back to reality.  Back to working 12+ hour days.  Back to paying bills and being broke.  Back to babying my throbbing head and searching for relief that I know will never come.

Does everyone else out there get the post-vacation blues?  Because I definately have them!

Off We Go

Getting ready to leave for our summer, family vacation! Be back in 9 days! Hope you all have a great week!

Love, Jess

All Fired Up

I went to Dr. Feelgood's office on Wednesday for a routine follow up and a medication refill.  When I first arrived, the PA...whom I love...came in and assessed me.  Then, what came out of her mouth next had me bawling and having an instant panic attack.

She told me that after discussing my case with Dr. Feelgood, he felt that he had explored every treatment option and that this was basically the end of the road.  Then she said she wasn't sure if he even intended on following through with my medication refills.

I am on a number of medications currently, which I am not proud to announce, but one is an extended release opiate.  One that Dr. Feelgood prescribed to me back in Febuary because nothing else was effective.  This isn't really effective either as far as head pain, but it does help tremendously with my joint and muscle pain and stiffness.

So...I totally panicked for a couple of reasons.  #1...I was flabbergasted my doctor was giving up on me...and #2...if he did not refill my meds, I could and most likely would go through potentially dangerous withdrawal from going cold turkey. 

The PA went out and brought Dr. Feelgood in to see me immediately.  He instantly put my mind at ease.  He said he was not giving up on me as a patient, but that he was incredibly frustrated that the insurance companies override his medical recommendations.  Specifically the neurostimulator trial and the stay at the clinic in Michigan...and that he was out of any other options to give me.  He also stated, as any good doctor would, that he could not continue to prescribe me endless amounts of narcotics indefinately.  Which, obviously, I understood and completely agreed with.  So, that being said...he is bascially insistent upon me changing my insurance when open enrollment at my employer comes around in Novemeber.  I had thought about doing that when they refused my stay in Michigan, and now even more so that they refused the stimulator trial.  He agrees to continue seeing me every 6 weeks and refilling my medications until I switch insurance companies and go to Michigan. 

I am skeptical about going to the clinic as I have heard mixed reviews about their care.  But, I guess I will never know unless I go myself.

Either way...I need to make a change.  I cannot continue on this path of pill popping.

So far nothing else has worked.  Not Occipital Nerve Blocks, not Botox, not Medial Branch Blocks, not Radiofrequency Nerve Ablation, not medication, nothing.

While massage and chiropractics give me relief during the session, as soon as I am done with the treatment, I am back to where I started from...and alot of times in more pain.

So as of now...I plan on continuing with my medication and ice packs and occasional massages and praying that one day relief will come.

Medicated Not Motivated

Ok...while I am not really motivated...I am medicated.  Not feeling too great these past few days.  Hope to catch up with you all soon! XoXoXo!

The Great Vaccine Debate

So...I have this huge debate going on facebook right now.  Not really between me...as I am totally one of those people who believe everyone should have their own opinion...and I refuse to argue about it...but it's between other commentors.  I must say, people are passionate about this subject.

The subject being...vaccinations.

I know, I am sure some of you are going to get all fired up over this, but I am going to clearly state my experience and offer no opinion...well maybe a little one.

When Brendan was a infant and had his first vaccination appointment, I was all set on giving him whatever the doctor recommended, totally in agreement for all vaccines to be given.  I mean...it's the right thing to do for my child and the community...right?  Or...maybe not. 

So...he recieved the usual Diptheria, Tetanus, Pertussis, Measles, Mumps, Rubella, Polio and Hep B. 

I do not remember exactly how long after receiving said shots...he went out.  Like unresponsive to any kind of stimuli unconscious. 

The doctor's eventually chalked it up to an allergic reaction to the Pertussis portion of the vaccine.  Now...with the mixture...it is quite impossible to pinpoint the exact culprit...but as a young, new mother, not yet an RN with any experience...I took the doctor's word as gospel.  And I have to admit...I do love my Pedicatricians and trust them immensely.  They are highly regarded in this town and I have a close working relationship with them in the hospital.

So in future years...Brendan received the DT version...minus the Pertussis.  So, yes...that means my son is not vaccinated againt Whooping Cough.  It has concerned me through the years, especially when there was a supposed outbreak in this area...but what I witnessed when he was a baby was also very frightening...so I was always torn.

When Zachary came along 5 years later and was about to recieve his first set of vaccinations...I was advised to skip the Pertussis portion altogether due to his brother's (what they called) severe allergic reaction.  So again...I complied...freaking out every time one of them got a cough.

To skip ahead...last week...Brendan went to the Pediactrician's office for yet more vaccines.  It is time for his 7th grade boosters.  Now, the office we go to does not offer DT...so we go to the Health Department for that one, however he recieved the MMR and Varicella.

A couple days later...he looked like this...

He awoke covered in a rash...face swollen, a fever and swollen joints in his hands which he complained hurt when he tried to open and close them.  Poor guy was crying because he had no idea what was happening to him.  All he knew is he looked awful and he hurt.

So, again...at the recommendation of his Pediatrician...off to the ER we went.  I thought perhaps that was a little over the top, as he was not in any respiratory distress...but the fact that his hands and face were so swollen and his joints hurt...scared me enough to take the physician's advise. 

In any event...it was decided between all docs involved that it was a probable reaction to the MMR due to the Measles-type rash and accompanying symptoms.  He was given antihistamines and steroids. 

This was on Sunday...it is now Thursday and most of the symptoms have resolved...he is just still a little spotted.

I am again finding myself torn to continue with the entire vaccination schedule...for both my boys.

I am obviously aware of the pros...but now have come in direct contact twice with the possible cons.

So the question to my Facebook friends was a simple To Vaccinate? or Not To Vaccinate?  Then World War 3 broke loose on my Wall. Oy!

Birthday Boy

We celebrated Zachary's 8th birthday yesterday at Mimi's (my mom) house. It's funny, every year, I ask the boys what they would like to do to celebrate...and the answer is always the same. Pizza & ice cream cake at Mimi's! It's definately become a tradition in our family to celebrate every milestone and holiday at her house. I guess the kids all like the consistentcy. Aunts, uncles, grandparents and cousins all came together once again to celebrate Zachary turning one year older. It's hard to believe my baby is no longer a baby. Makes me a little sad. Those infant and toddler years are a distant memory. Now I will have tween and teen years to contend with soon. I am thankful to have such well-behaved, sweet boys. My Zachary is definately the more ornary of my two. He has a smile as big as his heart and a laugh I could just hear over and over again. He is a snuggler and looks up to his big brother. He loves music and he loves to dance. Definately the entertainer in the family. His enormous big blue eyes will make you melt, and his head full of gorgeous curls are enough to make any girl jealous. His favorite color is green. He enjoys soccer and basketball...and cannot wait to start his second year at surf camp. He spends his days off from school riding his bike, fishing in our pond and pounding the neighbor kids with water balloons! He adores Jesse and constantly reminds him that he is his best friend. Happy birthday to one of the loves of my life...I am so lucky to have been chosen to be your Mommy!  XoXoXo!

Painful Days

Yesterday I had 200 units of Botox injected into my face, head and neck.  Knowing full well it would throw me into agonizing pain, my Neuro ordered me a side shot of 60mgs of Toradol.  Which his medical assistant decided to give me in my scrawny arm.  Ouch!  I don't know about you all...but I usually give and recieve Toradol in the rear...and I much prefer it there...way more meaty!

So...as a result of mutiple needles sticks and lack of food intake...I decided on the way out it would be a good idea to pass out.  Yup...me...the nurse...the one who sees blood and guts all day long...who has had numerous pokes and IV sticks in every part of my body a bazillion times without flinching...fainted in the hallway of my doctor's office.  My blood pressure plummeted and my heartrate was a whopping 48 bpm when I woke up.  Ooops.

It was so embarassing.

So...then I proceed to drag my sorry ass to work this morning, squinting my eyes in pain and apparently slurring my speech and talking very slooowly.  Then...I get asked by my charge nurse if I'm high.  All I could do was laugh.  Of course she soon realized the absurdity of such a question and quickly apologized.  Honestly...I wish I was high...it possibly would've helped.

Today...I also packed up the belongings of one of our 3 month old baby girls that has been living her entire short life in our NICU on a ventilator...that passed away last week.  I went into work in the middle of the night after she took her last breath to take her picture.  I took pictures of her still, peaceful little body.  I took pictures of her mother, father and big sister cradling their little angel...of her tiny feet...perfect ears, petite nose, curly hair, clenched up fists.  The family found the strength to come back to our unit today to gather her memory box full of those pictures...to be used for her memorial service later this week...her beautiful satin gown with pink flowers and lace bonnet...her footprints...curly locks of her dark hair, and all the other momentos that I and the other nurses that cared for her had gathered in those 3 months.  And I cried.  Letting that box go...was me saying good-bye.  Good-bye to a sweet baby that will forever be in my heart.

Burst My Bubble

Yesterday I recieved a letter from Aetna.

I assumed it was just an Explantion of Benefits as I get them regularly...but my heart skipped a beat when it stated that the insurance company has made a decison about coverage for Percutaneous Implantation of Neurostimulator Electrodes.

It read:  Coverage for this service has been denied for the following circumstances...

(Now I will spare you the two page details, but one part that got me was where it said):  "Aetna considers use of cervical spinal cord stimulation for the treatment of members with disc herniation, neck pain, and/or cervicogenic headache.  Based on the clinical rationale provided above, coverage is denied as not medically necessary under terms of your benefit plan."

Are you fucking kidding me?!? 

Even if I put aside my diagnosis of Basilar-Type Migraine, my diagnosis of fused cervical vertebrae, bulging discs and bone spurs which in turn cause constant cervicogenic headache should be enough. 

Seven years of medication, surgery, injections, and other various treatment still was not enough to convince them that my quality of life is diminished and a Neurostimulator may be beneficial.  At least allow me the trial implant for crying out loud!

I suppose Aetna would rather another member of society be walking around hopped up on opiates and muscle relaxers.

Way to go insurance companies....you suck!

Photos By Mamie

Creating this blog has allowed me to meet so many amazing, strong women that I now consider to be my friends.  One of whom, is Mamie McClellan...a fantastic photographer and a chronic pain sufferer.  She lives her life battling multiple illnesses such as Crohn’s disease,  Rheumatoid Arthritis, Fibromyalgia and Supraventricular Tachycardia...all the while raising her daughter, Katie, and persuing her passion for taking pictures.  I was honored to be asked to send her some of my knitted hats to use as photo props.  Here are a couple of recent pictures taken of beautiful baby Emily wearing a Pixie Dust Beige hat with naturally rolled brim in Fairy Tale Pink accented with a cute little flower...perfect for any little girl!

Be sure to check out Mamie's blog...Photos By Mamie!!!