Emotions Running High

I don't even know where to begin explaining this past month.  It's been a whirlwind.  Overwhelming, frustrating, scary, exciting, emotional, stressful...

First off, I started my new job on October 31st.  For 3 weeks I sat in orientation and computer classes.  It is ALOT and I am in a little over my head.  But everyone I've spoken to said they all felt that way in the beginning.  It's just such a huge change for me.

This past weekend I got to finally see patients.  It was great, but definately different.  I'm still not 100% clear what my responsibilities are, but I am with a preceptor out in the field for 6 weeks. 

Tomorrow, I go back to babyland for the day.  I have mixed feelings about it.  I want to be home for the holiday with my family, and I don't really want to work a 12 hour shift...but I am looking forward to seeing my L&D girls and I'll be getting quite a nice paycheck for being there...which I need for Christmas shopping!

So, aside from my busy work schedule this month, it's been a rough couple of weeks healthwise...and not mine.  Unfortunately my mom had emergency surgery for a bowel obstruction...which resulted in the removal of a tumor, 6 inches of her small intestine and a bowel resection.  We are still waiting on the pathology results of the specimens, so prayers for a good outcome are appreciated.  She finally got to come home on Monday after a couple of unexpected setbacks, so that is what I am thankful for this Thanksgiving.

Happy Turkey Day to you all!!!

Cha Cha Changes

I feel like I have been going a mile a minute lately, I have barely had time to read all your posts, let alone write one.  But, hopefully, things are about to slow down.

I made one of the hardest decisions of my life.  I resigned from my full time position at work.  Yesterday was officially my last day as a full time employee and it was so hard.  I cried off and on all day.  My friends ordered take out for lunch and bought me a giant cake.

I still question whether or not I made the right choice, but until I took that leap...I'd never know.  For the past 5+ years, I've been "Jessica...Labor & Delivery nurse."  Delivering babies has defined me.  It is my passion and probably always will be, but something had to change.

I was finding myself dreading going into work everyday.  I'd literally lay in bed the day before trying to "save" my energy for the upcoming 12 hour shift.  Then I'd drag myself through it...and crash afterwards.  I was miserable and grumpy to be around, and the people I love the most...Jesse and my boys, suffered from it.  I am no longer fun to be around.  I'm not enjoying my life or anything in it.  I am constantly in pain and exhausted and it's screwing with my moods. 

So...after weeks of praying and crying and debating, I gave my 2 week resignation at the hospital.  I will be staying on PRN, which requires me to work at least one shift a month, so I can still do what I adore, see my friends at The Family Birthplace and get my baby fix. 

Now, being a PRN employee equals no benefits.  So I also accepted a benefited part time position as a case manager with Hospice.  What a change this is going to be!  I am going from one end of life...to the other.

If you think about it...they're pretty similar depending on your beliefs.  I birth babies into this world, and I will be "birthing" the terminally ill into another world.  I think there is something magical about being able to witness someone's first breath, and their last breath.

I have some experience with death and dying...as I was the Perinatal and Infant Loss Coordinator for the hospital.  I'm just not so sure what I will be doing as a case manager.  To me, it sounds like my main role is pain management...which is also right up my alley.

What I do know about my new position is...I have total autonomy which gives me alot of flexibilty. I see my patients when I want to see them.  I get to dress up...no more scrubs, which is kind of exciting for me!  I will be getting paid more money...always a huge bonus!  I will be getting my mileage paid for, a laptop and a cell phone...and their benefits are awesome.

So wish me luck guys...I start my orientation tomorrow...which is the downside because it's Monday through Friday 8a-5p and I have NEVER worked 5 days in a row!  Yikes!  If most of America can do it...I certainly can for one week!

Decisions...Decisions

Good morning everyone!  I say that because it's 730am and I have been up for about 2 hours now!  Which is very unusual when I am not working...which I have yet to do in over a month.  I continue to be on my leave of absence for the rest of this week and the beginning of next week.  I follow up with my Neurologist next week to plan my next step.  Right now...it's totally stressing me out as I have had quite some time to think about my current work situation and I have had some opportunities arise...so I have decisions to make, that only I can decide.  I honestly DO NOT know what to do!  I'd love the Man upstairs to just tap me on the shoulder and whisper into my ear and tell me what to do.  My decision could either turn out to be great for me or terrible for me...but I will never know if I do not take that leap of faith.  However...it involves my livelihood and the wrong choice could be detrimental...or a blessing.

How does one choose?!?

On a different note, Wednesday I had my EMG and nerve conduction study.  To say I was nervous is an understatement.  I tend to have severe anticipatory anxiety...and in reality it wasn't that bad.  The electric "shocks" throughout my left leg were a little uncomfortable...but I tolerated it quite well.  I barely felt the zaps to my arm...and the needle portion of the test didn't phase me a bit.  Sad to say...I am used to lots of needle pokes and have almost become immune to them.

The reason being that I hardly felt any of the currents going through my left arm is because I do in fact have neuropathy in that arm.  Really still not quite sure why, but it explains the aching, numbness, tingling and weakness.

As far as my legs, all came out all clear.  The Neuro that performed these tests concluded that the problem with my legs going numb is most likely stemming from a problem in my spinal cord and not my peripheral nerves.  So that remains a mystery.

He prescribed an elbow brace, which I have yet to find one that I'd be willing to wear, to keep me from bending my arm and causing further nerve damage.

I tried on several at the store. One was this hideous long, bulky black thing and I could still bend my arm, so I figured that is defeating the purpose.  I then tried wrapping an ace bandage around my elbow, which he suggested as an alternative...but after 5 minutes, my arm was blue and obviously cutting off circulation.  So I took it off and haven't tried it since.  Obviously I just need to wrap it looser...but I am being stubborn.  I can't function with my arm being straight all the time!  I am left handed for goodness sake! 

What I am wondering, and will have to ask my doctor next week...is the neuropathy and nerve damage permanent?  I can't remember that from nursing school...I suppose I could Web MD it.

As I mentioned previously, I was given prescriptions for Amitriptyline and Verapamil to control my head.  After several weeks of the Amitriptyline and titrating up and weaning down on it to find the right dosage for me...I have come to the conclusion it has proven to be ineffective.  Not only has it done nothing to improve my chronic headaches, it is also not controlling my anxiety issues as the SSRI's did, and the side effects are so tough to take.  So my doctor told me if I felt that it wasn't working, I could stop it.  It's been 3 days now without it.

That's what I really like about her...if a med isn't working, she is quick to say get rid of it as opposed to keeping me full of drugs just for the hell of it.  My goal is to take as little as possible.  Previous physicians have had me on a bazillion pills that were not even doing a damn thing!

I am continuing with the Verapamil ER 120 mg every night before bed.  I have tolerated it well with no side effects.  The only issue is I have been very tachycardic with my heartrate consistently between 100-150 bpm.  I am thinking the calcium channel blocker is not controlling my blood pressure and pulse quite as well as the beta-blockers did, but it could also be the rise in anxiety.

For the anxiety I have been taking Xanax as needed.  I used to take it almost every night as it helped me sleep, but over the past 2 months or so, I stopped that habit because I was building a high tolerance to it.  However, over the past week or two, I notice I am needing to take it during the day sometimes to calm me down and hopefully lower my heart rate.  I am pretty sure I will need to go back on an SSRI next week.  Which I am content in doing.  I've been taking them since my twenties when I was experiencing panic attacks and agoraphobia.  If only one also worked as a Migraine preventative.  As far as I know, none of them do...but does anyone have any information on that?

So my current treatment plan has really dwindled on the pill popping front...and I am excited about that!

I am taking:
-Verapamil ER 120 mg QH
-Magnesium 400 mg daily
-Xanax 0.25-1mg as needed
-Baclofen 10mg as needed
-Norco 5/325mg as needed
-Phenergan 25mg as needed

Notice:  only ONE daily med!!!  Whoo hoo!  The Mag I do take daily...but supplements don't count to me!  I actually started the Mag again to help counteract the inability to go to the bathroom due to the the other meds...plus it is supposed to be good for me.
In regards to the Baclofen and Norco, my Neuro would like me to stop taking them as the Baclofen hasn't done much for me and the Norco causes rebound HA...but out of desperation I take them as rescue meds until my current prescriptions run out.

That is one topic I plan on bringing up next week...rescue meds!  Essentially...I have none that she has prescribed for me...and I believe rescue medications are just as important as preventative medications when dealing with the unpredictableness (is that a word?) of Migraine and chronic headaches.

I just have no idea which ones I could take.  Not only did I not tolerate Ergots and Triptans...this Neuro won't give them to me anyway because of the Basilar Migraine issue...they're contraindicted...but opiates sometimes make it worse, although if I take enough they just knock me out.  I have never tried Tramadol, which I have heard some of you take...wonder if that would help, or maybe go back to Fioricet?  Who knows!  Now I do know those can also cause rebound HA, but I am VERY careful about that.

Any suggestions would be awesome....I love to hear what other people are taking to try and control their symptoms!

Wishing...

...I was back on the beautiful, sandy beaches of Barbados!

What A Weekend

This weekend was spent babysitting my three nieces while my sister was on a mini-vaca in Puerto Rico.  My friend, Kelly came along with her gang of four.  That left two adults with nine children!

It worked out quite well.  Kelly took care of the seven bigger kids the majority of the time, while I laid around and was on baby duty.  I am used to juggling the care of multiple newborns at once...so it was a piece of cake with two.  I have a routine at work with my babies.  Change diapers, vital signs and meds, feed and back to sleep for 3 hours. I tried to get Kathryn and Sydney on that schedule and for the majority of the time it worked, except the sleeping part.  They wanted to "play".

We took the whole group to the park down the street, watched the older ones kayak at the beach in Jen's backyard, set up sprinklers for the younger ones to run through and baked a ton of cupcakes.

I ate more this past weekend than I have in quite awhile.  We ordered pizzas, sandwiches and made homeade macaroni and cheese with hotdogs.  When I say we...of course I mean Kelly!

It was nice to get away and feel like I was living a little outside of the four walls of my bedroom.  But...by the end of the 3 days...I was ready to go back to my little hole.  I now remember what it was like to get up every couple of hours in the middle of the night for feeds...and didn't miss it.

I have to say though...since being home...I am missing those sweet faces, baby toes, ruffled little butts and their yummy smells.  I could snuggle all day long with a baby sleeping soundly on my chest, burying their little faces in the crook of my neck.  I am definately in my element that way.

On to some updates about my ever puzzling health.  I continue to be on a leave of absence from work.  While my employers and co-workers are nothing more than supportive, I have this tremendous amount of guilt and anxiety about not being there and letting everyone down.  So I am a little stressed about that.

I went and saw yet another Neurologist yesterday...and loved her!  Let's see if we can make it past the honeymoon phase and last long term.

She...and I kinda like the fact that she is a she...took the standard medical history and did the usual neuro exams.  She said my symptoms reek of something neurological but it could be difficult to pinpoint the cause.  She informed me that sometimes people have symptoms and never find out what is causing them, in which case we just treat the symptoms.  That is kind of difficult for me to accept as I want an answer to this mystery.  I had more labs drawn and next week I am having an EMG and nerve conduction test. 

When I was discharged from the hospital a couple weeks ago, I was put on Amitriptyline.  I had worked my doasge up to 50 mgs every night before bed, but I am not tolerating the side effects very well, so she decreased it to 25 mgs every night.  I still woke up groggy this morning and feel like it is sucking the moisture out of every cell in my body.  Hopefully it'll get better.

She is switching my beta-blocker to a calcium channel blocker.  While this will not help with my daily chronic headaches or my numbness and tingling she is hoping it will keep my basilar migraine attacks at bay...keeping me from any more admissions to the hospital.

I explained to her what happened with the Botox and how Aetna has now denied coverage because of my hospitalization due to migraine and them assuming it is not effective.  She offered to write a letter to Aetna explaining that I was not actually hospitalized for migraine but for other neurological symptoms.  See why I loved her?!?

It also didn't hurt the fact that she called my previous doctor "sloppy" and was disappointed in the fact that he was prescribing medications specifically contraindicted in basilar migraine. I got some satisfaction out of her basically calling the guy an idiot.

What I liked the most about her was that she listened.  She listened and believed every word I said.  Rather than just put my symptoms in this neat little box of complications from basilar migraine she is investigating further causes.  Migraine doesn't cause your legs to be numb, blue and cold.  They look like they belong on a corpse.

For the next 2 days I am off to be pampered.  My dear friends are cutting and coloring my hair and giving me a massage and pedicure to help me feel better.  I love having close friends in the spa industry! 



Basilar Migraine or Not?

Not sure where to begin with my latest update...or lack there of because I still have no answers. 

Surprise...surprise.

On my birthday, July 27th, I noticed strange sensations in my left leg and foot.  I shook it off and thought it was because I sat on my ass in a 10 hour computer class all day.  It was numb and tingling...a "pins & needles" feeling. 

Over the next week or so, I noticed it getting worse...and it was not going away.  While it is very annoying...it was also beginning to be painful. 

Eventually I started feeling the same sensations in my left arm and hand.

On August 17th, I had my second 10 hour computer class.  I realized throughout the class that I could also not hold up my left arm or write.  I am left handed, so not so good.

It just so happens that sitting next to me was my Neurologist's wife, our hospital Stroke Coordinator.  While we chit chatted about our common history of Migraine, I told her the other symptoms I started experiencing.  She sent her hubby a text, and he called me with an appointment for the following morning.

He was of the opinion that my left sided deficits were due to Basilar Migraine.  While yes, my head hurt as it does every single day, I did not feel like it was Migraine.  Although he explained it was still probably symptoms of one even though I didn't have any aura as I usually do.  That kinda made sense so we came up with a plan.

He gave me 2 IM injections right then and there.  One was DHE, the other, Reglan.  I was to come back to his office every 8 hours for the next 2 days to have the injections.  So...I did and I wanted to jump out the window.  I felt like I was crawling out of my skin.  I felt so jacked up and anxious.  I now realize it was from the Reglan and I will never consent to getting that medication again!  For a week I had full blown panic attacks.

Anyways...he also sent me for yet another brain MRI...which was normal as always.

Over the weekend he sent me home with a "rescue cocktail" of Lortab 10/500 mg and Ativan 2 mg to take every 8 hours.

They did nothing for my symtoms, as I knew they wouldn't.

On Monday the 22nd, he called me and asked if my arm and leg were magically cured...of course, they were not.

So...he had me direct admitted to the hospital for "Status Migrainosus".  Which I still did not believe I was experiencing...but really, who am I?

So I VERY reluctantly went.  All the while continuing to have severe panic attacks from the Reglan.  I was quite literally a basket case! 

I was given cocktails of IV Depakote, DHE, Phenergan and Benedryl for 3 days.

It sucked.  The DHE made me so sick.  But if there is any bonus...it was I couldn't eat or keep anything in my stomach and I lost 5 pounds!  Gotta keep looking at the bright side, right!?!

I also had an MRA/MRV the 2nd day I was there.  The results came back with a possible blockage in my left transverse sinus (back of brain).  So the Neuro (oh and not mine because he failed to come see me at all while I was in the hospital, even though he admitted me) explained that I would need a CT Venogram to confirm and if there was a blockage, I would need a shunt placed.

I had the CT Venogram on my 3rd day there.  The report came back as asymmetrical transverse sinus, probably congenital. I was told that could be normal and that a shunt was now not necessary.

I had had days of medications that were not helping my symptoms and my diagnostic tests appeared to be normal, so I requested to be discharged on Wednesday.

I continue to have left sided weakness and numbness and tingling.  I continue to have my usual daily headaches and all the other wonderful accompanying symptoms I have been experiencing for years.

I have yet to have a follow up with my Neuro, and I have been calling everyday for a week, with no return phone calls.

I went and picked up all my medical records, discs of MRI's and reports of all my testing and sent it off to a specialist up north...so hopefully I will hear something next week!

I got a kick out of reading the progress notes written by the neuro who saw me in the hospital.  He made numerous mention of decreased strength and sensation on my left side...yet no one seems to think it is abnormal for a 34 year old female to be experienceing this, nor is anyone coming up with a plan of care.  Again it was said to be a characteristic of Basilar Migraine.  Really?  Since July 27th?  Doubtful.

I went and saw my Rheumatologist so I could  feel like I was being somewhat proactive.  He, of course, said he believes it all to be neurological, however ran a bazillion labs, which I hopefully will get the results on Tuesday.

Meanwhile, I have been off work since August 9th and have no clue what I am supposed to do now.

Me from A to Z

A- Age:  34

B- Bed size:  Queen

C- Chore you hate:  Vacuuming

D- Dogs:  Two Maltese, Milo & Maisy

E- Essential start to your day:  Coffee and Meds

F- Favorite color:  Pink

G- Gold or silver:  Silver

H- Height: 5' 9.5"

I- Instruments I play:  None, although I wish I knew how to play piano.
.
J- Job Title:  Registered Nurse

K- Kids:  Two awesome boys, Brendan (12) and Zachary (8).

L- Live:  In Florida

M- Maiden name:  Salley

N- Nicknames:  Jess, Jessie

O- Overnight hospital stays:  Yes...many, unfortunately.

P- Pet peeve:  Nail biting...Zachary and Jesse both bite their nails and it drives me nuts!

Q- Quote:  "One day at a time".  Not exactly insightful but it's how I live my life.  That and "Medicated and Motivated!"

R- Righty or lefty:  Lefty

S- Siblings:  Two sisters, Jen and Jackie, and one brother, Tim.

U- University or college attended:  Florida College of Natural Health (Esthetician) and South College of Florida (Registered Nurse).

V- Vegetables you dislike:  Cucumbers

W- What makes you run late:  Oversleeping and Kids

X- X-rays you’ve had:  Too many to count, but lots.

Y- Yummy food:  Sushi and Italian

Z- Zoo animal favorite:  Monkeys

*************

I got this idea over at The Sassy Lime ...I would love for others to play along, so if you do, make sure to leave me a comment with a link to your blog so I can read your answers!!!
 
Hope you are all having a fantastic weekend.  Mine's been rough and I have alot to tell, but cannot muster the strength to do so today!  Fill ya all in later!
 
Love, Jess
 

 
P.S....See that message on my shirt..."Hot Mess"...Yup...that's me!

Perfect Babies

One of my oldest and closest friends, Kelly, moved back home this week with her precious, newest additions.  This is Kathryn and Sydney.  I was dying to get my hands on them and take some pictures.  Being babies, they did not cooperate as well as I would of liked, but I still got some great shots.

There is nothing I love more than tiny, yummy newborn babies.  They are so soft and smell so sweet.  Technically, Kathryn and Sydney are not newborn though.  They were born premature, weighing 4 lbs each.  Now they are about 7 weeks old, weighing 7 lbs each.

Perfect itty, bitty baby toes are my absolute favorite.  That, and teeny tiny baby butts!  Nothing cuter!  I am so greatful to have my friend and her family home.  Kelly is my friend I wrote about in a previous post about my panic attacks and agoraphobia.  She isn't my friend, she is another sister.

I also took some amazing photos of her two little boys as well...which I will post later.  They are so handsome and just as sweet. 

On a different note...I go for my MRI in an hour and a half.  Which really means I should be in the shower, but I just had to post some of my new pictures!



My Brain is Too Big

Turns out my brain might be too big for my skull.

Chiari Malformation was brought up as a possibility a couple of years ago by my previous neurologist.  After an MRI of my brain, he ruled it out.

I went yesterday to Dr. Feelgood's office for my 6 week check up and a medication refill.  Unbeknownst to me, Dr. Feelgood was out of town and I saw one of his associates.  I hadn't seen this dr. before, so I was asked to go through my entire medical history. 

She decided to pull up some of my MRI scans and review them for herself, right then and there.

After going over them for what seemed like forever....she is of the opinion that my MRI is definately abnormal with the cerebellar tonsils extending into the foramen magnum, possibly compressing the brainstem.

In layman's terms...my brain is too big for my skull.

No wonder my head feels like it is about to explode.

I do not want to get my hopes up, thinking I found an answer.

I am also nervous that this might be the right answer.  Which will most likely mean that brain surgery will be in my future.

I am scheduled for 2 more MRI's. 

In the meantime, I have weaned myself off of one of my pain meds as I felt it was not helping, and the dr. added Baclofen to take three times a day.

I do not know if it is the Baclofen, or the weather...but my head has been killing me these past two days, more than normal.  Not a migraine...just a more severe pounding.

I know some of you out there are currently taking Baclofen...does it cause you to have headaches?

Click here for more information on Chiari Malformation

Quick Question

Anyone ever tried Stadol NS for their head? I've read mixed reviews and was thinking maybe I should ask my Neuro to try it. I give Stadol IV frequently to my laboring patients, but don't know anyone personally who has used it for Migraine.

34 And Fabulous

Wednesday, July 27th, I celebrated my 34th birthday with my sis.  I ended up having to go into work for 10 hours, so that wasn't such a happy birthday.  That night my mom, dad, grandmother, sister, our significant others and kids all had a pizza dinner followed by ice cream cake.  For 34 years now, Carvel ice cream cake is all we have ever had on our birthdays.  It's a tradition I never intend to break!  Yum! 

Here is hoping for a happy, healthy year!

As part of my birthday and every other holiday gift this year...Jesse and I booked a cruise to Alaska last night!  We will be sailing on May 18th!  So this gives me something very exciting to look forward to and gives me time to start saving some $!!!

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!!!

Goofy Faces of Zachary

Oh how I love this boy!

P.S.  Brendan will be next!!!

Panic Disorder with Agoraphobia

A fellow blogger inspired me to write this post.  The topic is something most people in my current life don't even know I suffered from.  However, I decided to start this blog as a way to cope, meet others, and perhaps help someone else.  So my life has been an open book of sorts for the past 10 months...I figured I might as well share some of my past in hopes that someone will maybe learn a little.

When I was 18 years old and still living at home with my parents, I started getting these strange feelings.  It started off as periodic episodes of intense fear, that would make me feel as if I were about to die or loose control.  I would get heart palpatations, numbness and tingling throughout my entire body, dizzy, faint, vomit, uncontrollable diarrhea, hyperventalation, difficulty breathing...you name it...I felt it.  The kicker is...nothing would set theses episodes off.  I would just feel this way completely out of the blue.  I kept it quiet for quite some time because I was so embarassed.  Eventually...those episodes...turned into a daily way of life.

I find that to be interesting since my head seemed to take that route years later.

I remember one day where nothing I did would distract me...and I literally thought I was going insane.  If I wasn't dying...I wanted to.  Finally, I took my mom out on our porch and told her what was going on.  As a nurse, and unbeknownst to me...an anxiety sufferer, she told me it was anxiety attacks.  She gave me a half of a Xanax...and I freaked even more. 

Up until a few years ago...I did not drink, nor take any kind of medication for fear of feeling out of control.  I was scared to even take cough medicine!  Boy, ALOT has changed!

I was unable to be home alone.  My mom would leave in the mornings to take my little brother and sister to school, and I recall sitting on the couch for the 10 minutes she was gone, shaking and throwing up non-stop.

I couldn't eat, I had no appetite and I had a fear of choking on everything...which led me to look completely anorexic.

I would have the most irrational thoughts...and no matter what my brain knew...my body responded the way it wanted to...without control and against my will.

Eventually the fear of driving and leaving my house started.  One day I was stopped at a red light at a four-way intersection.  I then noticed cars surrounding me on both my right and left side.  I began getting hot, sweaty and I thought I was going to pass out.  So I did the unthinkable.  I slammed on the gas.  I slammed on the gas and ran that red light, right through a busy intersection.  After that incident, I decided to stop driving.  It led to me holing myself  up in my bedroom all hours of the day and night.  I wouldn't leave my bed.  But, I couldn't sleep.  I would stay up all hours of the night until I could non longer control my eyelids staying open...then sleep until late in the afternoon.  Every night before I did finally fall asleep...I would pray to God that I would wake up and all those feelings of doom would be gone.  Yet, everyday...I'd awake and instantly feel the panic.

After what seemed like forever of going through this...my mom dragged me...kicking and screaming out of the house and to a psychiatrist.  This was obviously something I wasn't going to just get over.

The Dr. diagnosed me with Panic Disorder with Agoraphobia.  I was prescribed a daily dose of Paxil, and Klonopin as needed for the really rough times.  At the time, I knew nothing about those classes of medications.  When I learned that Klonopin was an anti seizure medication...I could not understand why the Dr. had prescribed it, as I certainly wasn't having seizures.  I threw it away.  Back then I was unaware that meds were used for more than one ailment!

I started taking the Paxil slowly.  Like ridiculously slowly...and not as I was supposed to.  But, remember...I had irrational fears of putting anything into my body that would alter how I felt or reacted.  I would cut it into tiny slivers.  I am certain I wasn't getting anything by doing that.  I did come around, put on some big girl panties...at least training pants...and started taking regular doses. 

Throughout that entire time, my best friend, Kelly, would come over and just sit in my room with me.  After starting the meds, and seeing a therapist on a bi-weekly basis, I began to be able to go out of my house a little.  I still wasn't able to drive, or be alone...but my sister and Kelly would take me to the bookstore (where I bought every book on panic attacks I could find), or to a movie, or to dinner.

I felt comfort in reading stories of others out there suffering from the same thing as I was.  I was not the only crazy person...and I was not going to die. 

I also never wanted to be around anyone who didn't know about my condition.  Which was only a select few.  I did not want to have a severe attack, and others not know what to do...or worse yet...not understand.  It was humiliating.

I don't know how long exactly I suffered before I began to actually live again.  But...I did.  I went on to have a somewhat regular life for awhile.  I began working, formed a romantic relationship, moved out on my own...and got pregnant with Brendan at 21.

While I had the occasional anxiety attack, I had learned tools to "talk myself down."  If I picked up something to read, or called Jen or Kelly to distract me...it would eventually go away.

I continued Paxil throughout my entire pregnancy and through the year of breastfeeding.  Thirteen years ago, the risks to a baby were unknown.  These days...there is actually a class action lawsuit againt the makers of Paxil for several reasons.  One of which is that it causes birth defects in the fetus.  Brendan was born healthy.  He was born without a Pectoralis Major muscle in his chest...and as he gets older may need surgery...but more of the cosmetic kind.  I was told he'd probably suffer from weakness in his arms...but that is not the case.  He also suffered from terrible reactive airway disease as a young child...which did require surgery at All Children's...and now is on 2 steroid inhalers and albuterol daily.  Is that from the Paxil?  I don't know...and honestly, I don't care.  Most babies born these days from Paxil exposure suffer from cardiac anomalies and more critical illnesses such as Pulmonary Hypertension.  So if his issues are related to the SSRI...we got off easy.

I did well for awhile.  I was able to care for my son without too much anxiety...and as I said, I led a relatively normal life.  Until I stopped breastfeeding.  I am unsure if it was the switch in hormonal balance...but the panic and agoraphobia started up again...4 years later.

That period did not last nearly as long, and I had a great support system, as always. 

Over the next 10 years or so, I continued to take the Paxil.  Not necessarily because I felt I still needed it...but because everytime I tried to wean myself off of it...I went through horrible withdrawl.  No matter how slowly I did it.  Google it.  Seriously!  There's a class action lawsuit for the withdrawl aspect as well.  It was torture.

Only when I started seeing a neurologist was I switched to Cymbalta.  Then to Prozac...which I am still on.(but also now...for pain control).  After 16 years...I seem to be unable to come off of an SSRI without major complications.  Which means, yes, I did go through Zachary's pregnancy and year of breastfeeding on Paxil as well.  He wasn't missing any muscles...but had seizures as a baby.  Unrelated to the meds though.

My panic disorder and agoraphobia disappeared years ago.  While I do still feel anxious alot of the time, and have an occasional panic attack, such as when I have to fly...I have no problems popping some pills to calm me down.  Luckily they do go away after...although I never feel I am ever totally out of the woods.  I could have another period of my life ruined anytime, anywhere by uncontrollable, irrational fear.

I feel like if I came through it...anybody can.  Really, it's difficult to put into words how bad I was...but I was B.A.D!!!

Scarves

Yup...I have broadened my horizons and moved on to scarves!



Chasing the Blues Away

Well, I finally learned how to create my own header.  My last one mysteriously disappered.  Anyhow...hope you all like it!  I do!  And it totally conveys how I feel on a daily basis.

I realized I haven't written much about my head lately.  But, the time not writing about my anguish and showing off my new hobby has been a fun distraction.

The reality though...is I'm miserable.  Not that that feeling has ever really gone away.  I am very good at hiding my feelings and pressing on...doing what needs to be done as far as work and kids and being a good partner and housekeeper.  I can only keep that charade going for so long before I crumble.  Right now...I am a heaping pile of agony, depression, anxiety, guilt...you name it.

I'm just sad.

I'm sad I cannot will myself to feel better.

I'm sad that no one is giving me a magic cure.

I'm sad that I am letting my co-workers down for not being able to pull it together to go to work.

I'm sad that on a daily basis my children ask me "Mommy, do you feel good today?"...in the hopes that I will actually say yes and we can spend some time doing something fun...together.

I'm sad that Jesse has had to go through the majority of our relationship taking care of me.

I'm sad that I am forever waiting for damn insurance approval so that I might have a procedure that may improve my quality of life.

I see my primary care physician on Monday morning, hoping to get a referral to a GI doc to figure out my increasingly worse abdominal issues.  And I know I have said it before...but when the head hurts...the gut hurts...and when the gut hurts...the head hurts worse.

Also looking into other options for going out of state for treatment.

Hope you all are having a better day than me, but sometimes...I just gotta vent!

Lots of love!

Springtime Flowers



Colorful, springtime, flower toddler & baby hats



Celebration (or Not)

I am struggling to find the right words for this post.

I initially wanted to write about Mother's Day....and how grateful I am to have amazing, strong women surrounding me, encouraging me, and constantly supporting me.

I wanted to write about how thankful I am to be blessed with two handsome, sweet boys...and how lucky I am to have been chosen to be their mother.

Then, I read some of your posts...and I felt guilty.

Guilty because there are some people out there that tomorrow..will not be celebrating.

Those that have had the unfortunate experience of not having a mother of their own...and those that have had devastating losses...and those that have and always will  be unable to concieve or become mother's themselves.

However...I am celebrating...as callous and selfish as that may sound.  Me not celebrating Mother's Day, and what I do have would be like me not celebrating Christmas because other's don't believe or me not celebrating if I won the lottery because not everyone won.

Tomorrow I am celebrating the fact that I do have a mother...a mother that did the best she could to raise her 4 children, a grandmother that has always been there for me in everyway, and the 4 babies that I grew in my tummy...2 of which are in heaven and 2 of which I am going to smother with kisses and hold onto for dear life.

Obsessed

Here are some more of my hats...

Yup...I have become a bit obsessed with the knitting.  I find it quite relaxing...and it does not require much thought or effort.  However, I'm thinking I need to broaden my horizons and learn to make some other items though.  Guess I better turn on some more YouTube!

Happy Easter



The Easter bunny came.




What's this?




Diggin' for more...




Oh so serious!




Such a sweet face.




Ending the day with a water balloon fight.




Just a little more water.

Hope you all had a Happy Easter!

  

Knitting Baby Hats & Other Ramblings

My days off from work are supposed to be lazy, relaxing and stress free.  At least that's what I wish they were.  These days...not so much.  I have been running around just as much when I am off work as I do when I am at work.  And when I do...only bad things come from that.  Jesse actually scolded me this morning for it.  My days off lately have been spent at doctor's appointments, nail appointments, hair appointments, Brendan's orthodontist appointments, Zachary's parent/teacher conferences, waiting in car rider lines, doing homework, researching things for work (that's another post), learning how to knit, trying to have time for reading & blogging (which I obviously have neglected)...and preparing for Easter Sunday.  Whew...I am exhausted just typing all of that.  In all honesty...I am not coping well with my overwhelming schedule and my never-ending pain.  I have totally been disregarding my health.  My yoga routine has fallen by the wayside...and my diet is anything but healthy...if and when I eat at all.  Most of the time, food is so unappealing to me...and ends up making me nauseous. *BIG SIGH*

The other day at work, some co-workers of mine were discussing another employee's migraines.  I just sat there, quietly listening...when one of them said to me..."Maybe so & so should get the stimulator instead...you seem fine."  Now I took this 2 ways.  First...I was actually relieved to hear my peers think I am "fine", as I am always paranoid people can see through my act.  I try very hard not to complain at work.  Secondly, my "act" seems to have bitten me in the ass.  Because, apparently, if I don't complain...people assume I am no longer hurting.  Which is so far from the truth, especially lately.  I feel like I am on a downward spiral. 

On to more exciting news...I FINALLY learned how to knit.  YouTube is actually good for something!  So here is my latest creation...for the wee ones I catch at work!