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.

Life

When you are facing so many unknowns with your health, you’re no longer living but rather, just existing day by day.  That’s pretty much me in a nutshell right now.  I finally had it out with my primary care physician and spoke to her on the phone for over 35 minutes yesterday.  It was painfully obvious, that she had little to offer in the realm of medical advice.  I knew more than she did and had asked for a simple test to be run, to rule out celiac disease which accompanies this auto-immune disease that I suspect I have.  It took me educating her on my symptoms and what they implicate, and how I need to rule this out too.  It may not help us in our quest to get a diagnose on the auto-immune disease, but it may shed some answers either way.

The ANA and Rheumatoid Arthritis panel, CBC etc came back negative or within normal ranges.  But that doesn’t mean anything.  People go decades before they show as ANA positive.  I suspect I am seronegative hence my results.

I initially thought this might be MS, but was hold by a few doctors that I would present clinically different.  So I dropped that as a real possibility.  However, something did come back as abnormal.  It was my uric acid.  According to how this lab performs the test, a reading of 3.1 or above is considered normal.  Mine was 2.6 which means I am low in uric acid.  This is not as common as being high in uric acid (which eventually leads to gout).  When reading up on ways to increase my uric acid, I found that patients with MS show low uric acid during periods where their MS flares up.

Now in and of itself, low uric acid doesn’t point to much.  But I suspect that my auto-immune disease also shares this clinical symptom.  I know what I felt.  And I know what I was going through for six solid days.  My body was being the attacked and I felt something destroying my myelin or whatever is part of my central nervous system.  I would hear an incredibly loud noise in my ears- like that low deep sound you hear when the TV goes blank and an emergency broadcast system message appears on your screen.  Once that started, I would then feel heat in a certain part of my body.  This attack it was all centered around my right eye.  And that’s the eye that my optometrist found a vision issue which can’t be corrected.  He’s fixed my prescription and out of the blue, I suddenly have a misshapened cornea, whereas my entire life, it’s been normal.  I now have to wear weighted contacts that fit precisely on my cornea.  Normal contacts move slightly when you blink.  But I won’t be able to see out of that kind, which might explain the fuzzy vision.

Since I suspect this is an auto-immune disease, I have gone nearly vegan (I will eat salmon, tuna or other wild caught fish).  I also have cut out all wheat, gluten and nightshade plants.  I’m not going to lie.  I’m going to miss visiting the top restaurants in LA for our weekly date nights.  I can’t take the risk that some cook uses corn oil instead of avocado.  I can’t put anything into my body that promotes inflammation.  I had no idea just how inflammatory dairy, meat, corn, oils etc were to someone suffering through an auto-immune disease.

The good news is, I contacted an expert in this auto-immune disease.  He is based in Los Angeles, wrote a book about the disease and even sits on the board of directors for the foundation that educates the public about it.  If anyone can figure this out, it’s him.  And- he’s agreed to take me on as his patient.  I see him at the end of this month.  Considering who he is and that other recommend rheumatologist said they couldn’t even see me till November, this was a huge blessing.

On an emotional level, I burst into tears last night, worried that I am still so young.  I went 3 years between attacks.  And I can’t help but wonder- Can I endure 3 attacks every decade?  Will neurological damage occur at some point?  Should I start recording messages to my children and leave them in an email account, so that they remember their mother…the one not affected yet by this disease?

Yeah that last one…that’s the one that made me bawl.

It’s just so hard.  So hard to fight when you aren’t even sure what you are fighting exactly.  Just weeks ago, I was running 25 miles a week.  Today, I can barely walk 2 miles.  I’m a fraction of myself.  I’ve lost 6 lbs in a week and I’m trying my best to focus on not losing anymore.  I haven’t been this thin since high school.  And it’s not a good thin.  It’s a sickly thin.  I can see it when I look at myself in the mirror.  I see more of my jaw and skeleton features coming through.  I see it in my eyes.  I’m not the same woman I was before our trip.

Even one of the regular checkers at Whole Foods pulled me aside and asked me, “Are you ok?  You don’t look well.”  And one of the other guys said just yesterday, “How are you doing?”  I replied, “I’m doing somewhat ok today.  Not as good as two days ago.  I feel very weak and have a lot of fatigue.”  We started discussing auto-immune diseases and he said, “It’s crazy how fast this all happened.  Once second, you’re this healthy runner.  And the next second, it’s serious.”  I said, “I know.  That’s exactly how it feels to me too.  I lost 6 lbs in a week.  I already saw I was going through muscle wasting.  It’s incredibly frightening just how quick your body can go.”

And frankly my friends, I don’t know how far my body would truly last if I endured a sustained attack again.  Everyone likes to think they are invincible.  I know I surely did.  Just weeks ago, I was posting push-up videos on my FB feed every day, cranking them out.  I felt he strongest I ever have.  Whatever this is, annialated me- and quick.

I know I have to push through.  That I have to regain everything I have lost.  And train hard to get my body in peak performance.  But I can’t.  Not yet.  The fatigue is still too great.

But I am fighting.  Know that much.  2CH is definitely a fighter and I’m going to learn everything there is to know about T cells and lymphocytes and cranial nerve damage and what my body needs to repair the damage caused from these attacks.

If if you get a chance, watch the Ted Talk from Dr. Wahl.  She cured herself from MS. It has to do with diet and your mitochondria.  And it’s fascinating stuff.

So that’s the latest my friends. Please continue to pray.   I need it….Lots

 

xx