Butterflies

 

 

 

 

 

 

 

 

 

 

 

As I looked down at Niall’s message, I felt a twinge of curiosity.  Who was this guy?  His message seemed so harmless.  So simple.  So innocent.  What could possibly happen by replying?  I didn’t get the feeling that this conversation would go anywhere, which I can say in hindsight, provided a false sense of security.  Or maybe I was already compartmentalizing or justifying my behavior.   But I definitely didn’t think at the time that this would end up in an actual, long-term affair.  I really didn’t.

Feeling confident, I hit the reply button and responded to the faceless profile photo and generic name: beachCEO

For some reason, I thought about Billy in that moment.  And how we had locked eyes across the bar and had mad chemistry at that first glance.  That was what I was chasing…not an affair.  I was chasing butterflies.

Well this would be interesting seeing as I am older than you! Hahahaha, but in all seriousness, after reading your profile, you seem to be seeking most of what I am too.  And logistically, you’re my neighbor so this could work out perfectly. But I am really picky. And what I crave is that instant attraction, the one that makes your heart flutter and you can’t wait to see them again. And I am patient, so although AM markets itself as “the place” to have an affair, so far, I haven’t found anyone “affair worthy” or worth my time.

I have only given my photo out once. I don’t keep any photos on AM. So if we chat long enough and I feel a connection, perhaps we can meet for a drink. I would send you my photo long before that of course. But the one guy who met me said I was beautiful, girl next door, refreshing, couldn’t believe I was on AM, a busy-mom-on-the-go, down to earth, and very easy going.

So tell me about yourself. What is your ideal situation? Are you married or just in a relationship? Depending on your answers, I will give you my personal email and then we can chat from there…

Hi there.  Yes, I am married.  Two kids.  I am very new to this site.  Not looking to change my situation (nor anyone else’s).  But looking to find someone I connect with mentally as well as physically.   Most importantly, I am looking for absolute discretion.   I take care of myself and hope to find someone who does as well.  Love to cook (can make a mean lamb roast) and love to travel when I’m not working.  You could say I am a bit of a foodie.  I’m an executive working in start-ups, looking to find someone special who will literally take my breathe away.

What about you?  Have you traveled much?

I hope you have a nice day 😉

Me too.  Married, not looking to change my situation whatsoever.  But I miss that spark that comes with someone new.  I am very new to this site as well.  Like I said before, I’ve only shared my photo once (the guy I met for a drink).

I’m 5’6, 135 lbs, brownish blonde hair, green eyes, tan, fit.  I am not going to say I have the body of an 18 year old.  Heck, I have had two kids!  But yes, I take care of myself as well.  I run 4-5 times a week.  Love to be outdoors etc.

I use to live in Europe, have traveled all over the world…EU, Africa, south east Asia, Oz/NZ, Fiji etc.

Discretion, of course, is part of this.  It’s imperative 🙂

Hope you have a good day as well.

 

Did you really travel to all of those places?  I’m officially jealous.  I’ve always wanted to do a safari in Africa.  You’ll have to tell me all about it when we get a drink.  My favorite country in Europe is Italy.  The food and the wine are phenomenal.  And the architecture!  You must go, if you haven’t been yet.

And I want to assure you now, that I am not interested in the body of an eighteen year old.  Chemistry matters most to me…and finding a sexy, classy woman is what I seek- which by the sound of it,  you are 😉

You must get inundated with messages all day.   I’m flattered that you responded to mine.  Tell me more about yourself.  I want to discern your tastes and know more about you.  Do you have any plans for NY’s?

Your friend,

Niall

 

Wow…he gave me his name. That’s brave.  It must be fake.  Or he is really stupid to be putting his real name out there like that.  I couldn’t help but think, “Keep your guard up, Kate.  You don’t know who this guy is.  He could be some axe murderer for all you know.”  But there is a certain level of faith one needs to have when dipping your toes into these cheating waters.  But I…wasn’t quite there yet.

Cautious.  That was me.  Niall would have to gain my trust before I would ever reveal who I was…or agree to meet in person.   I took a deep breathe, twirled a lock of hair between my fingers, then abruptly formulated my response.  Our messages, were like a tennis match, volleying back and forth in real time.

I too want that chemistry, which can be so elusive.  If I am going to cheat, it’s going to be with someone who rocks my world for lack of a better phrase.   So far most of the guys on AM are Neanderthals!

I have lived an interesting life. I am sure you have too. I moved abroad in my twenties, first Paris then London where I finally lived for about 6 years. I worked for various fashion companies. Then relocated back to the states where I continued to work.

As for NY’s, 1 party…not sure if we will go. Our sitter is sick so it will be a game day decision. What about you?  Fascinate me with your life story in a paragraph or two 😉

It was at this point, that I took a breather from our conversation.  Time was flying by and I was getting sucked into this non-stop conversation.  Which if you knew me, wasn’t really my thing.  I had things to do…miles I wanted to run.  And kids that needed tending to.  Talking to Niall was bleeding into “my time” throughout the day.  And I noticed that immediately (this is a huge warning sign of affairs).

I grabbed my running shoes and started lacing them up.  But not before refreshing my inbox one last time.  There, on the page, was a shiny golden key which Niall had sent me.  For those of you unfamiliar with how AM works, that means you’ve been sent private photos.  I immediately clicked on the message and staring back at me was a baby faced, slightly rounded face, 34 year old.  One photo was a close up in business attire while the other was a full length, in more casual clothing.  He had dark brown hair and chestnut eyes.  Was definitely taller than me but looked very, VERY young.  That wasn’t really the look I was aiming for (I wanted someone older, slightly greying- like Billy, to be honest).

I only had an instant to stare at his photos.  Because at that very moment, my husband came home and flung open our bedroom door.

I quickly turned off my computer, laced up my running shoes and headed out the door….chasing butterflies.

 

 

 

 

 

Pondering

Something has been on my mind.  And I really can’t talk about this anywhere else but here.

I was thinking about this the other day.  The fact that, even though I had an anonymous blog, I never did write about my affair with Nial.  I never processed it- well at least on paper I never did.

I ran.  And that became my therapy, spending countless hours rehashing everything Niall ever said to me.  And going over everything a million times in my head.  To the point of exhaustion and finally letting him and the memories of him go.

For roughly two years, I was ok.  But then my health declined.  And I’ve wondered now…did the stress of everything cause my auto-immune disease?  Should I have blogged about it?  Would that have helped?

I’m such an independent person.  And although I love to write, back then, I just needed the solitude as the pain was too great to even articulate.

I loved Niall.  And despite knowing in my heart that we should both stay with our spouses, it didn’t change the fact that I loved him dearly.  And losing him from my life cut deeper than I said.  The pain of losing him was brutal…as well as the aftermath of our affair.

Because I am stubborn and independent, I’m not someone to raise my hand saying, “I need help.”  I handle everything on my own.   Always have, always will.  Is that detrimental to my health?

What if that mentality backfired and triggered an auto-immune disease to develop?

I have so many thoughts along these lines. I would love to purge myself of any memories of Niall.  But I can’t.  That’s not how affairs and memories work.  Niall is still there….

Sure you move on, but the memories are like a caboose that follows you around.  Depending on the curvature of the track, sometimes you see them clearly.  Other times they are hidden from view, stuck in a dark tunnel, as you chug along the track.

It doesn’t help that I ran into Niall’s wife last week at the annual Christmas Lighting ceremony.  Vivianne had run ahead to look at a store window display since it was decorated for the holidays.  As I stood on the north side windows, less than 8 feet away, there she stood staring at the very same display- but from another angle.

My heart dropped.  And I scanned the crowd like an FBI agent, while feverishly texting my best friend to, “Fuck!  Come to X,Y,Z store NOW!”  Bless her heart, she was there in minutes, as we had gone together to the event.

Niall wasn’t there but of course, it made me think of him.  How could I not?  One second I am enjoying the holidays, the next second, that Niall caboose was suddenly the first carriage of my memory train.  Front and center…and it all came flooding back.

So the memories have been triggered by another casual run in.  It’s bound to happen where we live.  So it’s kind of expected, but still a shocker every time.  It doesn’t get any easier.  The entire thing has made me wonder if I should finally write my affair story.  And get it all out on paper.

Do I need to process something?  Could it make my condition worse?  Is it somehow causing my current condition?

I don’t feel stressed, as of today.  But then again, if the doctors knew about what I have gone through these past few years,  I wonder if they would say, “Yeah, stress can cause all sorts of symptoms.  Even yours.”  Or, “Absolutely not.  Stress wouldn’t cause this.  And could not trigger an auto-immune disease.”

I would love to hear your honest thoughts…as this is a sincere question and point of discussion going around in my head.

Instinct

I’ve always had a strong sense of instinct and I have followed my gut all my life. Not to sound conceited, but I’m rarely incorrect when following my gut.  That’s not to say I haven’t done stupid things in my life (like falling in love with Niall when he was never mine to begin with).  My gut was screaming at me back then, about how wrong my behavior was. But clearly, I possess the talent for ignoring my gut instinct sometimes too.

But in regards to the medical mystery I’ve been battling, my gut was right.  Despite the #1 expert in the field slamming the door in my face and canceling my first appointment, declaring he did not see an auto-immune process he could treat, that asshole was wrong.

For once in my life, I really wish I was wrong.  But my instinct said I wasn’t.  I kept pushing for more tests and practically have an honorary medical degree by now.  I set about figuring out my case myself.  And well, my dear friends….I was right.

Upon admission to Cedars Sinai Hospital in Los Angeles, I asked the admitting doctor to run a specific test.  It’s in the admission notes that I requested it.  Did they?  Nope.  And I never knew (until I ordered my medical records), that the rheumatologist overseeing my case failed to run it.

They don’t tell you shit when you are an admitted patient, my dear friends.  They just don’t.  Once you are admitted, you get visited by several doctors in your room.  And they ask questions, poke and prod.  And the entire time you’re kinda wondering, “When is anyone going to involve me in this discussion.”  It’s honestly the strangest experience.  I felt like I was some foreign alien while they looked me over, doing their consult.

On my own, I told them what I suspected I had.  But I think their male egos wanted to somehow prove me wrong.  Because my attacks (and the symptoms of that) equal very rare complications of the disease.  I read their non-verbal behavior to say, “Yeah right, you have this disease.  Statistically, it’s rare to find these symptoms in a patient, especially since your labs look great.”

But as my lovely eye doctor said to me much later in this journey, “It’s rare…until it’s in your chair.”

Am I angry?  Of course.  These doctors put me through hell, referring me to the director of MS believing I had MS.  And I lived for over a month believing that the doctors listened to me, ruled out this auto-immune disease and somehow determined that I really had MS.  But those fucking piece-of-shit doctors, that the #1 expert in the disease relied upon to do a thorough work-up on me, failed.  And miserably.

Technology is a sector I follow and I had learned about a new test, comprised of 9 antigens which can detect this auto-immune disease in patients exhibiting symptoms for less than 5 years.  It’s the newest test out there.  Which is why basic logic says to order this, instead of the other antiquated tests which detect antigens only expressed when you are decades into the disease (or completely full blown).

My results came back last week: everything on the new test was normal but one antigen.  I tested sky high on that antigen.  There is no reason for my body to be producing this antigen unless I didn’t have the disease…and all the while, I was being dismissed by the doctors.

I’m angry.  I have every right to be.

I want to send a certified copy of this  result to every doctor who was brought into my case at Cedars, emblazoned with the these words: ASSHOLE- I was right!  You FAILED.  Please surrender your medical license so other patients aren’t put though the same hell your gross incompetence did to me.

….actually, maybe I will do that.  I love that idea!!!!

But I realize my anger will only exasperate my condition….so I run.  Or walk on my bad days.  I’m managing my condition the best I can but some days, my symptoms flare to the point of being pretty damn difficult.

I’m not interested in being a guinea pig for big pharma.  I want HSCT to cure me of this auto-immune disease.  First, I must get the final diagnosis (yes despite this result that hasn’t been declared yet).  Then, to convince a doctor to harvest my stem cells, give me 4 days of high intensity chemo to destroy my immune system and then reinject me with the new stem cells.  It’s the only cure.

The only way out of this mess.

Changes

 

 

 

 

 

 

 

 

 

 

So I switched hospitals.  I think I shared that this was something  I had been considering for a long time.  It took speaking to my primary doctor, who agreed, before I pulled the trigger.  I spent a considerable time praying over finding the right doctor.  And asking God to please bring me a doctor who will actually listen to my entire medical saga thus far.

Well this week, my prayers were answered.

I made an appointment with a local rheumatologist, yet part of the new hospital.  I wasn’t expecting much and frankly, was only using this appointment to “get into the system” at this hospital.  The MS doctor had already referred me to two rheumatologist, which are the best of the best doctors at the hospital.  They initially said I couldn’t been seen till spring of 2017 (yes- this is the reality of just trying to get a diagnosis people).  After many emails back and forth, and lots of pressure from my side, the MS doctor was able to get me in this year.

But now, I don’t even know if I will need them.  That’s how great my appointment went this week.

Introducing Dr. K.

I had nothing prepared to say.  But I came armed with 4″ of paperwork and all my MRI’s to date.  When she walked into the room, I just said, “I’m really happy to finally meet you.  I have a complicated medical history story.  And there isn’t one doctor who has bothered to listen to it all.  Will you be the first one?”

“I’m all ears”, she said.

For the next hour, I took her through every single twist and turn.  From my attacks in 2013 through to this year.  She took extensive notes during the entire story, frowned at various time (like when I shared the doctors suspected I had a tumor and I was rushed in for a MRI).  And she got angry at parts of my story, “Why didn’t that doctor see you?  What was his reason?!?”  And when. I explained how I lived for over a month, thinking. I must have MS since I was referred to the MS doctor, she said, “There is a constant battle between rheumatology and MS.  Both departments are constantly referring patients back and forth.  It’s a long standing battle, I’m afraid and it puts patients like you, in limbo.”  I hadn’t realized the politics and dynamics between these two departments, so it was refreshing to hear such a personal insight.

When I explained that I had ordered my medical records and that they were littered with errors, and that I didn’t have time to clean them up and wait 60 days for doctors to respond to my complaints she said, “Don’t worry.  I’m not going to be biased here.  But just so you know, the MS doctor wrote a very nice note in here about you.”

I presented my case and explained what disease I thought I had.  But that I was open to other theories, however no one had diagnosed me to date.  When I explained we had maxed out our deductible, she replied, “Well we are going to reorder every single test that has ever been done on you.”

I watched as her fingers feverishly pecked away at the keyboard, multiple times.  Then said, “Everything I do, from here till the end of the year, will be free.  Come January, I’ll be on the hook for everything.”

I shared all the supplements I have been taking and Dr. K said, “Great- going the all natural route.  You’re taking everything I would recommend.”

“For now, no medications.  I don’t want to mask any of your symptoms.  Let’s get all these tests run.  Review in two weeks- then make a game plan.”

I seriously love Dr. K.

Twelve vials of blood later, I left with a big smile on my face.  I finally have a doctor listening to me and managing my case.  There is one special test that can only be run by the actual hospital, so I need to drive there.  Between the kids schedules, that pushes that test out to later next week.  And that’s the one test which always comes back abnormal.

All in all, it’s been a good week.  I even ran a 10k race.  Although my time was four minutes slower than last years, I’ll take it.  I’ve been through hell and back all summer, so just to finish was my goal.  I thought I would have to walk the race.  But I didn’t.  I ran the whole way.

The fighter in me kept going till the finish line.

Pain

 

 

 

 

 

 

 

 

 

 

It’s been over three months now…and still no remission.  Nor diagnosis.  I’m functioning and able to get the kids to school.  But I’m certainly not at my baseline and my symptoms keep ping-ponging all around my body.

I can honestly say, I’m in a shitload of pain.  I’m not a wuss either but this is chronic, unrelenting pain now.  My joints and about 6″ above and below them feel like they are burning.  Deep within my muscle there is a searing pain combined with joints that pop, click and from time to time, blow up looking red.  I take photos each time that happens and when I showed the Chief of Rheumatology, he said, “I don’t know what that is.  We’ll ignore it for now.”

Unfortuntely, I don’t get the option of ignoring it.

I saw the MS doctor and she said I don’t have MS.  I’m pretty certain this is an auto-immune disease so it’s pretty much on me to manage my case.  Which means, I’m changing hospitals.  There’s really only three great hospitals in Los Angeles, so I’m hoping this switch will finally land me in the offices of doctors who want to really listen and dig at my case.

As a runner and athlete my whole life, I never thought I would say this.  But…medical marijuana is starting to look very appealing at 2 AM and your arms and legs are on fire.  I’m not into smoking pot whatsoever but this pain is breaking me.

Diagnosis

It’s been three months since this medical saga started and still no diagnosis.  The hospital stay came to 30k (gotta love American healthcare costs–$860 for a vitamin B12 blood test, I kid you not!).  Thankful, we have excellent insurance so I’m not too worried.

I’ve had three MRI’s which are $6500 each.  Add in all, with the specialists, lab/radiology and doctors appointments (15 visits and counting), I think we’re hitting 75k worth of medical charges and still no diagnosis.

I saw the Director of all MS for one of LA’s most prestigious hospitals and she said for sure, this isn’t MS.  She thinks I have some underlying inflammatory disorder.  No shit Sherlock.

My day starts with applying Lotamax in each eye, which means I can’t put my contacts in for 30 minutes as the medication works.  I then stumble into the kitchen blind for a probiotic that I take first thing. Then I take 4 horse sized omega pills to help with my chronic dry eyes.   Then comes the vegan multiple vitamin and B complex pills.  Followed by turmeric and 6 Evening Primrose pills.  My eyes are so dry, I have to hydrate them with special drops now before I can put my contacts in.  And often,  I have to repeat the entire process- removing the contacts to rehydrate my eyes for a second time, then reinsert my contacts.

All of that…and I haven’t even gotten ready yet!  The clock seems to be ticking and time keeps flying by and I’m stuck fighting this mystery illness and handling my symptoms.  In a nutshell, it’s been pretty hard.

I’ve had to face the prospect of maybe having a tumor in my brain (thankfully the doctor was wrong and the brain MRI came back clear).  I spent weeks thinking this may be MS, which obviously wasn’t an easy thing to contemplate.  I’m a deep researcher and I was already half-way to signing up for HSCT and heading to Mexico for treatment.

As of right now, I know my immune system has been fighting something. Two labs came back abnormal: cryoglobulins and my C3 was low.  And I’m starting to think all my crazy symptoms may be caused by a virus.

I lost a lot of weight during this.  And every time I run into someone now, they always say, “Wow you look amazing.  What are you doing?” It’s very strange to look in the mirror and seeing the perfect body, yet knowing you didn’t do anything to deserve it.  And it’s strange seeing a body that looks healthy, yet isn’t.  They usually follow it up with, “Did you spend the entire summer working out?”  And that’s when I finally say, “Actually no, I spent the entire summer battling a mysterious illness.”

Usually they shrug up their faces.  People don’t really know how to react.  And I’ve figured out that most people don’t want to hear anything negative.  But not everyone.  I’ve gotten a huge amount of support, love and prayers from people I would never expect.  And that’s been surprising to say the least.

Maybe this is a common experience but keep that in the back of your mind, should you ever fall ill. You’ll notice who your friends are…and aren’t.

This is going to totally show my age, but the children’s TV program Mr. Rogers use to say on his preschool program, “Look for the helpers” when there is a tragedy.  And during this, I see many helpers popping up in my life, checking in on me- offering to come along to appointments etc.  I feel like each and every one of them has been used like an angel in my journey to a diagnosis.

And then there is my husband.  He has been my rock.  He has been my everything through this.  And he has stepped up more than I’ve ever seen.  The affairs don’t matter.  They are long gone, forgiven- and in the rear view mirror of our marriage.  God has given me a new set of eyes for my husband.

And that’s the hidden blessing in all of this.

Perseverance

Well a lot has happened since I last posted.  I still don’t have a diagnosis.  I was admitted to the hospital after I emailed the disease expert a photo of my knees.  I woke up one morning and they were both red and swollen looking- hot to the touch.  For several days after, they felt like the knees of a 90 year old- burning and achy.  That’s never happened before and I was worried that it meant I was about to flare up and potentially have another attack.

So the disease expert said to go to the hospital.  He was traveling but said his fellows would admit me, which they did.  I was there for 3 days while tons of doctors came into my room, asking me all sorts of questions.  And not once listening to my entire medical story.  I got poked and prodded and asked, “Can you feel this?  Is this sore?  Can you open your mouth and pull down your bottom lip?”  It was weird.

One doctor came into my room alone and I finally asked, “Can we talk off the record?”  He nodded yes.  I threw out my best guesses regarding what this could be, and he said, “It’s pointing in that direction.  But you need to be patient.”  Then they discharged me.

To be honest, all my labs look pretty good (heck they should.  I’ve always taken such great care of myself).  My ANA which indicates an auto-immune disease came back at 40 on the dot.  Usually if you have an AI disease, your numbers will be much higher.  Mine is the lowest score you can have to even test positive.

Other than that, the hospital hasn’t found much. They gave me a referral to a neurologist and she’s the big kahuna in the field of neuro diseases. In terms of a referral, you can’t be seen by anyone more experienced than her.  So we wait.  She can’t fit me in until the end of September. But I phone each day asking if there has been any cancellations.  My discharge orders said to be seen within 1-2 weeks.  So this isn’t ideal.  I need to see her sooner.

I reached out to another doctor and he ordered a bunch of brain MRI’s last Friday. I spent 1.5 hours laying in the tightest tube ever.  It was an older model machine and they didn’t even have headsets (just ear plugs).  At the last minute, that doctor ordered tons of extra views: specific nerves, optic nerves, brain stem and the entire brain itself.  I’m glad he did it, but it was really hard to be in that machine for so long.

My newest symptom is my heartbeat.  It’s racing for no reason and waking me up in the middle of the night.  So I saw my primary doctor yesterday (and btw-she blows as a doctor and this is completely above her pay scale-I need a better GP).  Anyways, I am now wearing a high tech heart monitoring device and she’s ordered another MRI, this time of my spine.

I’m hoping all of these tests will provide all the clues that the neurologist needs in order to make her diagnosis.  But I have a feeling, there will be more tests which she orders.

I’ve lost a shitload of weight.  All my shorts and jeans are baggy on me.  I bought a new pair of jeans and shorts as an interim measure.  I don’t like being this thin and want my more fit looking body back.  But the scary thing is, I fit into skinny leg 26″ jeans and a size 0 short.  I’m pretty certain I’ve never this thin.  And that scares me because if I endure another attack, I can’t see my body doing well by losing another 15 lbs.  I’m pushing food into me all day long but it’s like my body keeps losing weight.  It’s as if whatever disease this is affects your metabolic rate.

Please continue to keep me in your prayers.  It’s been the hardest two months of my life.