Fade

I wrote this on May 26, 2014 but never sent it to CEO for some reason.  We wrote to each other every single day back then. Not sure why I didn’t sent this, but I stumbled upon it today.  Moments like these still happen- Reminders!  They are always popping up- even still.  Reading this over again, it’s almost like it never really happened.  It feels so far away and yet not, if that makes sense.   

This use to happen quite a lot after we first met. I would be busy with something. And out of the blue, a memory of you would flash into my mind almost like a photo being taken. It just happened right now, as I was getting ready to go to sleep and turn off my iPad.

It went off like a flash in my mind and made my heart skip several beats. And I found myself half-smiling and half-gasping for air at the same time. I was suddenly back in SF, in our hotel room. It was early morning. White crisp sheets surrounded us. And you turned over to face my back, placing your fore fingers around my panties and pulling them off with such desire. No words were said, other than hearing the vibrations of your breathe against the back of my neck. I remember it now, only I am watching it unfold from above…like a movie. It’s always like a movie for me….

I remember how great it was to wake up like that. To let you take me over and over during our time there. It was raw. It was passionate. Exciting and memorable. It took my breathe away like it did just now, remembering you…your touch…your hands…all over my body as I moaned and panted through every single passionate thrust inside of me.

Every inch of you…every inch of me…together again in our own little world. Holding me down…then kissing me…my neck…then grabbing my ass so tight as you fucked me till every every last drop of cum came out. Turning me over, now face to face, you said, “Kate….you captivate me.”  You didn’t need to say those words, although it made my heart smile. I felt it too.

You took my breathe away that morning. And gave me such butterflies that it felt like I had a lump stuck at the top of my throat. Just seeing the picture again in my head…..white sheets, black silk thong being pulled off….me and you. A rush of excitement pulses through my chest similar to the feelings you get when your dropping from a roller coaster.

And just like that, it stops. The picture fades. And I am back in my bedroom getting ready to turn off the light. I don’t want to say goodbye to that memory so I try to fall asleep as fast as I can, so I can see you again in my dreams. And keep reliving the sweet memories over and over again.

Fate

Tonight, I texted my husband, “Want anything else from Whole Foods?”  And he replied asking for a specific craft beer that I had never heard of before.  I finally found it on the shelf and as I placed it into my basket, two little girls came running past me.  I lost my breathe, not from their beauty, but because they are CEO’s kids.  And they look just like him (especially in the eyes).

Yep, I had another run-in friends.

I froze, then stealth glanced the perimeter and saw his wife, now standing in front of the seafood counter with two little girls tugging at her shirt.

Great.  Just great.

This has got to be the 10th time I have run into her.  It’s like fate keeps bringing us together.  I don’t even run into my own friends this much.  Statistically, what are the odds?  Like nil?

I quickly grabbed my phone and took a pic, because this has become a running joke between my best friend and I.  I sent her the photo (it was only the back of her body) and yet her reply was priceless, “OMG!  I know who that is!  Fuck how on earth do you keep running into her?  You don’t even live in that small of a town.”

Before I could reply, it suddenly dawned on me, “Niall could be behind them, perusing the produce section and shopping as a family.  Oh geez…please say he is not here.  I’m in my workout clothes and sweaty from a 6 mile run…then again, my ass has never looked better.”

I took a deep breathe, turned the corner and there was no Niall to be found.  Just all the friendly workers who know me by name, waving to me saying, “Heyyyyy Kate.  What’s up?”

I couldn’t help but think…she’s in my territory.  There is a huge Whole Foods less than 1 mile from her house and yet, she came to this little neighborhood location.

As I checked out, I half expected for her to end up in my lane.  Thankfully, that didn’t happen.  I pondered back to the time I ran into her over the holidays, both of our kids staring into the same decorated windows during the annual Christmas stroll.  And sadly, for the second year running- Niall is never by her side.  It’s always just her…and the girls…alone.

He’s a brilliant entrepreneur, but an absentee father and husband.  Had we left our spouses and ended up together, I would be just like her.

Alone.

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.