Wean and Lean in 2014 - Cleveland Clinic, Part I

Hi all,

If you are reading this, you have asked me to update you on my "vacation" to the Cleveland Clinic last week.  THANK YOU for your thoughts, prayers, and overall caring about my health. 

I'll just say - HALLELUJAH!  FINALLY, I have answers, diagnosis', and a game plan to rejoin life.

So... here it is:

For many years, I have been dealing with strange, seemingly (or as I was told) not related issues, that had rendered me damn near useless.  I couldn't walk due to pain on most days, I had pain every where, my knee was hindering every things, and then the strange stuff. On top of pain, I was exhausted - not the type of tired when you didn't sleep enough - this was I couldn't remove myself from the couch, or computer chair (lol) type of tired.  Just going to the grocery store was on a "I have no choice, because I'm out of coffee, coke, and most other things" as need basis.

My hair was falling out quickly.  According to my hair dresser, over 60% of my hair was gone.  Yikes!  Again, my thyroid numbers in November proved that it was fine on the meds as is.  So, that was a massive WTF.  Nobody knew the reason. 

I had been seeing doctor after doctor, specialist after specialist, who would happily put a Band-Aid over the symptoms.  But NOBODY could figure out the whole picture - the "why" or "are these all related".  And, it had gotten to the point where I was convinced I'd be in a wheel chair by my 51st birthday in May.  Hell, who am I kidding -- I'd be in a killer cute pink ramped up scooter!  I still have taste :)

Ahhh yes, the local doctors loved to tell me that all of my symptoms/issues could be fixed if I LOST WEIGHT.  Hey, dumb shit, guess what?  Me being fat doesn't make my hair fall out, make me so dang exhausted that I cannot move, and the chronic migraines isn't due to my shape.  Ughhhhhh

Yes, let's not forget living with daily Migraines.  My local Neurologist told me to keep taking the Bayer Migraine as needed, and to keep a food log to see what might be causing these daily nightmares.  Yes, the easy ones were to give up aspartame, MSG, and food colorings... but they kept coming back. 

I hated to admit it to myself, much less others, that I was in bad shape.  As you ALL know, I'm not prone to whining, complaining, or asking for help, but the time came where I admitted defeat.  Or the Universe bitch-slapped me into realizing I was defeated!!! lol 

It was on our final baseball trip - in August - that reality slapped me in the face.  It was a brutal vacation/trip, and one, frankly that I didn't much enjoy.  A lot of driving, hotels, air planes, and walking.  7 hotels in 8 days, 3 flights in those 7 days, and 2000 miles driven.  The thing I most looked forward to (and became the day from hell) was driving the PCH from LA to Santa Cruz in California.
Let's just say the fear of mountain/cliff driving, motion sickness, and winding road phobia didn't allow for much relaxation.  Oh, and realizing that I'd have to hold my bladder for HOURS until we hit civilization.  :)   The walk through the Seattle airport wasn't much fun either... however it was the straw that broke this camel's back. 

I needed help. 

Somehow I made it through entertaining at Thanksgiving, and Christmas with the Hansen siblings coming to the house.  First time ever, I asked for help.  I asked Kate to bring a few dishes - and that my friends was a HUGE wake up call for me.  I'm a control freak (shocker, not!!), and love to cook and entertain.  Love it!  This year, it was tough - and took my three times as long to get things done.  Hell, there were quite a few things that fell into the "the 'f' if I'm doing THAT this year" category.  Polishing silver:  not happening.  Christmas cookies/goodies:  not happening.  Shopping:  one trip and done (thank god for internet shopping).  Luckily, it all worked out, and we all had a blast! 

Sorry, I digress. 

Back in early November, life was unbearable (at times), and I had reached wits end.  I prayed one night to God to please help me find the way, answers, lead me to the path of recovery/answers.  LITERALLY the next day (I'm NOT kidding) Mike comes home from work and tells me that Grande has a new program they're offering all associates - a health concierge service - that will assist in finding good doctors, specialists, and all-over health care.  I called the next day, and that began the path that led me to the Cleveland Clinic. 

That one phone call to the local "concierge" passing me off to Pinnacle Care/Private Health Advisory for a review of my health chart.  Within 24 hours, they called me back and said the advisory board reviewed it, and need you to go to either Mayo Clinic or the Cleveland Clinic.  We tried for Mayo's for the ease of location.  However, Mayo's didn't accept me, because.....I HAD NO DIANOSIS'.  That was a doozer of a blow right before Christmas.  So... Cleveland Clinic accepted me with open arms. 

As it turned out, it was a major blessing that Mayo turned me down. 

It took a while to get every thing set up, and the only thing they asked was that I see a local Rheumatologist so that all specialities could be ticked off the list.  Great.  The guy was a total asshole.  You all know the type..... about 5'2 on a good day.... a member of at least 3 country clubs so that he can feel like a well-rounded jackass, probably drives a Ferrari convertible (red), and wears his reading glasses low on his nose.  Ok, now that that picture has been painted in your brains eye, picture me going in, not really giving a hoot about what he has to say, because I'm still heading to Cleveland Clinic regardless, and hearing him say "there is nothing wrong with you, you're fat, and you've wasted your time and mine".  EXACT WORDS.  No lupus, RA, fibromyalgia, or any other issue. 

It's amazing that I didn't cold cock his ass.  Nice huh?!?! How classy of me :) 

Off to Cleveland we went......

I had decided (in my own head) that when at the CC, I would be 100% honest, forthcoming, not argue with them, and would accept whatever happened without question.  I decided that they are the ultimate experts, and whatever they say... goes.  I had to lay ALL of my cards out on the table, or something would be missed.  No more walls, control, or excusing every little thing. 

The first day we met with the Internist, who would become "our Quarterback" of my medical team.  He spent 80 minutes talking with us.  Who does that?  Literally 80 minutes.  He came in, and sits in front of us, and just wanted to talk.  How did we meet?  Where do we live?  Wanted to get to know us as people vs. a new patient.  He was awesome, and has amassed quite the impressive background.  He spent time in Evanston, IL at Northwestern, and quickly realized that I was a Packers fan to his Bears
affiliation.  I guess no one can be truly perfect?!!? lol.  He was close.  By the end of the appointment, I was in tears of joy.  He is good, really really good.  In the midst of the appointment, my dearest husband told him that I snore all of a sudden (last few years), and gag on my own spit.  lovely!  Well... that led to another addition of the Sleep Clinic while there.  He had studied my entire health history prior to my arrival, and already knew what most likely was going on.  The sleep issue he didn't know about (why would he?), and was happy Mike tattled.   The doctor wanted to hear every symptom, every complaint, every strange thing that I could think of, including personality quirks.  My god, did he KNOW what he was in for?!?! lol  So... on the premise of 100% honesty, I laid it all out there: 

• Hair loss (more than 60% of original hair)
• Exhaustion
• Walking ability - pain, sharp shooting pains, lack of motion, Achilles (stabbing knife pain), cannot stand for long periods.
• Migraines - chronic - daily (mostly)
• Restless leg syndrome (self diagnosed)
• Tingling of feet, legs, and fingers
• Swelling of lower extremities, knees, legs, ankles, feet
• All over pain, on some days cannot walk from bed to the bathroom.  Other days, no pain at all.
• Knee issues - diagnosed as patella osteoarthritis.
• Unexplained weight gain  - substantial.
• New rosacea diagnosis.
• Allergies - to all but one antibiotic, peanuts and shellfish.
• Barrett's Esophagus Disease.
• Chest pain for no reason

Quirks:

• Can't stand crowds.  Will start pushing people.  Airport security lines as example.
• Personal space - have to have it or I go cray cray.
• Loud noises, strobe lights, and flickering lights drive me to a migraine.
• Smell aversions.
• Anxiety for silly reasons.  Travel days are hell for me, and those around me.
• Chaotic environments send me to a tizzy fit.  (think cafeteria)
• Inappropriate freak outs when someone else is driving, and worse in adverse conditions.

~ ~ ~ ~ ~ ~

With that list, I thought no way would it all tie together. 

By Tuesday at noon, I had all but one major diagnosis in the bag.  (or hag, in my case!).  Some had  to be proven by further blood work, tests, and such.  By the end of the week, they were. 

Diagnosis': 

Severe Fibromyalgia. 
For those that don't know, diagnosis of mild, moderate and severe are based on how many check marks on the Government and American College of Rheumatology (ACR) criteria, which include chronic, widespread pain for at least 3 months, and the presence of 11 out of 18 tender points.  Well... I had 17 of 18 of those tender points.  Along with Somatic symptoms that might be considered: muscle pain, irritable bowel syndrome, fatigue/tiredness, thinking or remembering problem, muscle weakness, headache, pain/cramps in the abdomen, numbness/tingling, insomnia, depression, constipation, pain in the upper abdomen, nausea, nervousness, chest pain, blurred vision, fever, dry eyes, ringing in the ears, heartburn, oral ulcers, loss of/change in taste, seizures, shortness of breath, loss of appetite, rash, easy bruising, hair loss, frequent urination, painful urination, and bladder spasms.  So based on all tests, I am considered severe.  Yay, now what prize do I win?!?! lol 

Central Sensitization Syndrome (a direct link to Fibro).  Loud noise, light, smells deeply effect me.

RLS (Restless Leg Syndrome) - given a magic pill for that

Obstructed Sleep Apnea - This new C-pap machine SUCKS.  Did I mention (lol) how claustrophobic I am?!?!  These two don't mesh well together.  Ok, so, last night was the first one with this damn entrapment machine, but it did bring back horrid memories of a head brace worn with my braces as a youngster, which lasted not long, if memory serves correctly. 

MOH Chronic Migraine - due to addiction to caffeine and Bayer Migraine medication (OTC).  This diagnosis is the most pressing, most threatening of all. Apparently, when high levels of caffeine and Bayer are mixed for a lengthy period, it creates a "Anacin" toxicity in a body that is quite dangerous. At my current level, it is a hairs-breadth away from shutting down/affecting my internal organs.  Oh shit, THAT got my attention.  What really bites the most is that the local Neurologist told me to keep taking the Bayer Migraine stuff if it was working.  It couldn't have been more wrong, or worse advice given.  (More on this in a bit)

Thyroid:  Hypothyroid (I've been under care for this since late high school) but it's out of whack again.  DUH.  Will be seeing one of CC's Endocrinologist when I return the end of March. 

Hair loss:  Due to stress, and a normal 3-month shedding cycle.  Possibly aided by the thyroid whack out. 

~~~~~~

Holy shit, right?!?!? 

All this, in 4 short days.....all this, after spending over 4 years dealing with it (some longer).  All this, when the local doctors thought I was nuts.  All this, and my life had become unbearable. 

I've always said that I can deal with ANYTHING, I just needed to know what I was dealing with. 
Except for the upcoming wean... the rest will be fairly easy to fix/deal with. 

Now.... for that upcoming wean. 

Hello, my name is Julie, and I am a Coke addict. 

The first step in any program is admitting that there IS a problem, right?!?!?  Well... there it is in black and white.  I am laying it all out there for the world to see.  Screech those brakes!!!  The "Coke" I am speaking of is Coca Cola, not the white powder street drug varietal :D

In order to properly diagnose my true Migraine situation, I need to be clean from the caffeine and Bayer regime.  The ONLY way I'm allowed to do this is to be under direct medical supervision, preferably in a hospital environment (a rehab program), and it must be a slow wean.  Luckily for me, there are two highly trained Migraine Headache specialists in the area.  The CC doctor trained one directly, and the other one was his partner at the CC for a time.  He felt comfortable allowing me to be under their care for the wean.  IF, this doesn't work for whatever reason, I will have to spend a month in out-patient drug rehab at the Cleveland Clinic, while sleeping in a local hotel.  In addition, Mike would have to be in attendance every Friday for the duration.  That's a HUGE commitment, and life interruption.... so I am trying to avoid that at all cost. 

So, I have my appointment the first week of April... and the wean will be formulated at that point.  In the mean time, I was directed to keep my coffee, and coke, consumption at the current levels as goes for the Migraine med.  Luckily, the migraines have mostly subsided. 

~ ~ ~

I am heading back down to the CC the last part of March for further testing, and to see the Endocrinologist for the thyroid.   I think I'm scheduled for a thyroid ultrasound, Achilles MRI, blood work (what the 22 vials previously taken at one sitting wasn't enough?!?!?), Sleep Clinic adjustment meeting, and to attend a Fibromyalgia all-inclusive Clinic. 

YAY! 

The bubble that we were living in while there, was pretty incredible!  The heavy load was lifted from my shoulders, and my entire being was elevated to damn near glee levels.  I found myself crying in all but one appointment, just from sheer joy and relief.   I know Mike didn't quite know what to make of the new Julie (or the old one), and was shocked at how (his words) "really open" I was with all of those I came across.  Especially the Psychologist.  I needed to see her in order to be accepted into the Rehab/Chronic pain rehab program.  Should I be happy that I was accepted?!?!  lol  However, the Psych. spent her Grad school, and Post Grad school years in Madison at the UW.  YAY!  She worked hand in hand with the PACT program (where my brother Steve is enrolled), and knew first hand what stresses I am under on a daily basis dealing with my brother Steve.  During this visit, she was asking about events in my life that I can pinpoint that caused me to inwardly deal with stressors.  When I mentioned that when my parents found and read my diary as a early 20-something year old, that was one I could remember.  She kept digging, and I would give canned answers, such as "stuff NO PARENT or NO KID would EVER want their parents to know about" type of response.  She kept digging!  So, I laid it all out there..... lol.... (remember it was the early 80s, need I say more?)... and let's just say, Mike's jaw hit the floor.  He was in the corner, shaking his head, almost laughing.  P.S., nothing I "shared" was new to him... he just couldn't believe how "open and honest" I was. 

She asked, I answered.  ha ha ha ha ha ha

It is simply amazing to have been blessed with this experience.  The light bulbs have been turned on, and tons of little and big Aha moments.  Deep, thought-provoking conversations, and life changing answers.   All this because of a simple little prayer one night.  FINALLY! 

~

Game Plan:

Deal with the Fibro:  Get my fat ass into a geriatric water aerobics class, pronto.  Oh, I am also allowed to swim, slowly, one lap (a full lap, down and back).  I joined the Y, and have been going M, W, and today (F).  I have to go at a snails pace, no weights.  Just water.  YAY!   I haven't truly swam a full lap since my days at Westside Swim Club (or fibro fog is making me forget).  It felt SOOOO good to stretch out those same muscles, and how quickly my body remembered all those laps for swim  team.   I am a water fish any way.... so being ordered to a pool is not work for me!  Hell, I barely classify it as "exercise" - it's more like play time in my mind.  However, my soreness reminded me that it was work-ish :D

RLS - I'm one a wonder drug that allows me to sleep through the night.... dealing w/ slight druggie feeling, but will work on adjusting the time taken vs. going to sleep.  It's been only a week since we've been home!

Get weaned (see above)

On the C-pap machine. 

Deal with the limitations of Fibro and Central Sensitization.  It totally explains why I go psycho on Mike's tush when he plays the radio every time we're in the car.  He has to have noise, it drives me nuts.  I'm guessing there will be some bumpy roads ahead while adjusting to an acceptable compromise. 

See a counselor to learn/break down my Type A, control freak, do-it-all life. 

Accept that life has been changed. 

~ ~ ~

A lot of people have Fibro... and for any time that I thought to myself that it wasn't a real disease, I'm sorry!  Like so many, I thought it was a lame excuse for simple aches and pains.  I looked at some  and thought that they were complainers, whiners, and generally weak people.  Again, with that damn 100% honesty thing!!!  Boy was I wrong.   I found out it's common amongst Caregivers (took care of Mom, and alcoholic father trying to take of her).  Triggers are: dealing with a death (hmm, a few of those)... more common in women (last time I checked, I pass this!), and those that are tough cookies - dealing with all of it, keeping it all inside, introverted stress.  Yup... it's no wonder.  This is the simple explanation, at best. 

Life goes on.....

I am looking forward to the upcoming Cottage season!  Now, I won't feel guilty about hiring a cleaning service to attack the spring cleaning at the cottage :).  It is so easy to maintain, normally, but for a big clean job.... I have to call it.  Bring on Merry Maids :) 

So... I must end this... as it's time to head out to the Y. 

Thank you ALL for caring!!! 


PS:  It was in the middle of the Migraine neurologist appointment that Mike and I came up with the motto of this year.... "Wean and Lean in 2014".  I was saying "this year it's about the Wean, and Lean"... and Mr. I-am-known-for-my-"special"-lyrical-ability, came up with the final product! 

So.... WEAN AND LEAN IN 2014, it is!