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.

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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.

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.

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

 

History

Before I ever entered into an affair, I was that mom that never did anything for herself.  That parenting style had massive consequences for me.  And in more ways than you could ever imagine.

When Zane was still an infant, I started to experience pins and needles in my feet and hands.  It drove me nuts and they were constantly buzzing.  The sensations moved around on my body and originally I suspected perhaps my back was out.  Maybe a major nerve was pinched and that’s why I was experiencing these symptoms.  So I saw my chiropractor several times, with no improvement.

I started experiencing intense heat along the right side of my face.  It felt as if the nerve there was going off and it felt literally as if my face was burning.  I would lay in bed, breastfeeding my son, with an ice pack over my face.  That’s how horrible it felt.  I created a post on Facebook, pretty much in a panic, asking friends if they knew what this could be.  Some thought it would be peripheral neuropathy.  Others thought it involved the trigeminal nerve that was exactly where my symptoms were.

My husband took me to the ER and that day, the attending physician suspected MS.  I fit the classic profile, age and my symptoms warranted further investigation.  So they performed a brain scan and I braced myself for bad news.  When the doctor arrived back, he said it was clear/inconclusive.  We breathed a sigh of relief.  They never scanned my spine or did a lumbar punch.

I was sent home with instructions to follow up with a neurologist.  But the office couldn’t get me in for another 3 days.  My symptoms were horrendous and I felt like I was on fire.  They prescribed gabapentin at the ER, but I refused to take them as it passes through into the breastmilk.  Which meant, I would have to stop feeding my child-who by the way, couldn’t feed from a bottle.  So I held on, as the pain became unbearable.  My husband just stood stoically by, unable and unsure of exactly what was happening to me.  A few hours later, in the middle of the night, I went into Zane’s room and breastfeed him for the last time, through a mountain of unrelenting tears.  I told him how sorry I was.  That I tried my best.  But mommie needed to take that medicine now.  I held on for as long as I could.  That’s how bad the pain was.

As the entire house slept, I finally took my first dose and waited.  The pain and fire on my face wouldn’t stop.  I thought I was literally going to die.  By 3 a.m., I finally woke my husband and told him he had to take me back to the hospital.  My mom came over to watch the kids and away we went.

My heart was racing, that much I know.  And the hospital was overfilled on what was a full moon night.  They ran more blood and thought maybe I had a tumor on my kidney, which caused the pins and needles to be constant due to some enzyme or something being excreted.  But when tests came back clear, they gave me a massive dose of something to calm me down.  I don’t know what it was.  But one second, I was in the worst pain of my life and the next?  I was hallucinating about a little boy wearing a graduation hat running around my hospital room.  And then, a green leprechaun came dancing through my hospital room next.  There use to be a time when we paid money to experience stuff like this….but those times were long over and the nurse likely gave me an overdose.  I was discharged immediately once I started talking about the leprechauns.  Pretty sure, they didn’t want a lawsuit for what they had just done to me.

I was foggy for the next day and I think within 48 hours, my symptoms were through the roof.  At that point, I didn’t trust our local hospital.  Neither did my family and we all agreed, we were heading up to Los Angeles to been seen at the best hospital.  I would not allow them to discharge me, until they figured this thing out.  They ran so much bloodwork looking for mineral deficiencies, Lyme disease, auto-immune diseases etc.  I saw a neurologist and all they could find was an unusually high heartbeat- tachycardia.  They pretty much came to the conclusion that all of my symptoms were caused from stress.   But they wanted to send me home with beta-blockers due to the heartbeat findings.

When I came home, being my usual stubborn self, I said, “Fuck that” and “If stress caused all these symptoms, then I need to remove the stress.  Not add a pill.”  So I started the process of transforming my life, one walk at a time.  One run at a time.

Now I still had all of the symptoms, and I wasn’t entirely convinced that stress caused this (because I am a stubborn super woman kind of wife/mother) so I turned to eastern medicine and found the best rated acupuncturist.  I explained everything and her first words were, “Don’t worry.  I can fix this.  I see plenty of patients in my office after having their second child.  Their bodies are maxed out.  Completely out of tune.  But this will get better.  I promise.”

Now I have no idea how it even works, but once those needles were put under my skin, I would start to feel an electrical current flowing from one to the next.  It kinda freaked me out at first.  But I would soon come to enjoy that sensation.  At first, I saw her twice a week.  Then we switched to one a week.  Then a few weeks lapse at the end.    It took 11 treatments but I finally got to the point where my symptoms were either gone 100% or they were so minor, it made no use to go back.  I had noticed sometimes that acupuncture increased my symptoms in certain areas after those spots weren’t buzzing anymore.  So it was a calculated decision on when to stop.  The total time frame lasted two months.

Why does all this history matter?  Well for one, I’ve never told you guys.  And two-I don’t even tell my friends all of this.  And three- I really need to write about what is going on in real time.  Because friends-I’m not good at all.

Before anyone suggests I am some type of hypochondriac, let me assure you-I’m not.  I’m probably the most even keeled person regarding medical stuff you will ever know. Fall down?  Oh you are fine, dust yourself off.  Feel tired?  Ah, let’s go to bed early tonight.  Other than seeing my OB yearly and doing a mammogram, I pretty much stay far away from doctors.

So with all that said, let me share that I have had many weird symptoms over the past month now.  First was the return of sporadic and very mild pins and needles in my foot.  Second, I felt a strange electric/heat sensation running up under my right eyelid, which was eerily all too familiar to what I had gone through three years ago.

I have had non-stop extreme vertigo and dizziness.  Spatially, my brain is sending me signals that surfaces have a higher pitch than I know they do.  These symptoms can be explained due to my inflamed Eustacian tube and subsequent retracted ear drum.  I get that and took a course of prednisone to reduce the inflammation.  According to my ENT, my inner ear looks great as of today-but my symptoms remain.

So I can honestly say, if those were my only symptoms- the pins/needles are caused from stress and the vertigo/dizziness was caused from the inner ear issue.

But I’m also experiencing epic migraines.  I’ve had four now since the optical one I had before our trip.  My vision has changed overnight.  I feel as if my brain isn’t getting the right signal to my eyes.  It feels as if my eyes aren’t working together.  And if anything moves past me quickly, my vision doesn’t react correctly.  When I talk to people, I struggle comprehending exactly what was said.  Cognitively, I feel fuzzy.  My head is buzzing and I have ringing in my ears.

Yesterday was the worst.  I felt as if my entire body was under intense inflammation.  Like every damn cell was inflamed.  I felt warm and yet, had no fever.  The only thing I could do was lay in a bathtub of ice cold water to relieve that symptom.  I had another heat wave/band and starburst visual disturbance coming from my right eye, when I awoke this morning.

I saw my ENT for a follow-up yesterday and went through every single symptom.  I finally said, “Look, I think I have MS and am experiencing a relapse.”  I told him all about three years ago and everything that happened then.  He really tried to impress upon me how important it was not to “go there”.  To stay positive.  He made it sound like just having migraines in of itself could cause all these neurological issues.  He said MS was so rare and the chances were so slim.  He did his best to convince me that it’s probably not that, just like all the doctors before him.  I nodded up and down, trying to soak in his positive outlook.  I am a big believer in mind over matter.  And I realize just how powerful the mind truly is.  Heck, you can convince people they committed crimes.  So logically, I know anyone can convince themselves of having any disease.

But I know my baseline.  I know just how strong I have been.  I’ve run 2,300 miles since radically transforming my life through fitness and I’m not a stressed out person.  I suspect my eye issue is optic neuritis which takes seeing an ophthalmologist to diagnose.  I have an appointment with one on Wednesday.  Thankfully, it’s my friend’s husband- so at least I should get a solid opinion on that part.

Today, I landed back at my ENT to perform a test called a VNG.  It’s a series of tests to see if a balance/vertigo issue is related to your vestibular system.  That can only get impacted two ways: disease or damage.  As in lesions from MS.

Well the results came back and my hearing is great.  But my eyes aren’t tracking objects correctly.  Which means…something in the brain.

I’m trying really hard not to “go there” so believe it or not, besides googling what VNG is for a friend, I’m staying away from the internet (except to post here).  I don’t want to go down that rabbit hole of what-ifs.  But I’m scared.  Really scared.

My ENT ordered a rush brain scan so I had that done this evening.  Results should be here tomorrow.

My inner gut says I am experiencing my first relapse of MS symptoms.  The ENT said it could also be some rare benign tumor on the auditory nerve (think that’s what she said).  Trying to stay positive but my head feels so off.  My vision is not right.  I walk holding onto walls or my children.  And anything with motion causes my brain to not process it.  I’m a fraction of myself and I just want answers.

And a good cry.

And a bottle of wine once this is all done (anyone care to share it with me?)

……

………

…and friends–this afternoon I got a call saying my father passed away last night.

I need prayers.  Lots.  In every language around the globe.  It’s been that hard of a day.

 

Vertigo

That’s it.  I’m officially dumping my doctor.  This is the 3rd time she has given me an incorrect diagnosis.  What is it with general medicine physicians?  It must be where all the reject doctors land.  Anyone with a proper skill set would naturally be specialized.  Only in medicine can you do your “job”, be completely inept and still get paid.  Try that in any other field and you wouldn’t get far.

Sigh…I digress.

So today, my symptoms are worse.  I’ve spent the entire day battling vertigo and laying in bed, much to my kids disappointment.  I finally called an ENT I saw a few years ago and basically got myself a same day appointment.

I explained my entire story- where I had been- when I flew home- the migraines and now my ear issue.  The doctor said, “I think I know what this is.  But first let me check your good ear.”

She compared the two and said I had a severely inflamed Eustachian tube which caused it to dysfunction.  I haven’t had any allergies or fever, so she thinks I either got a virus from all the mosquito bites or perhaps I picked up something in the water while snorkeling.  Now add in my recent air travel and the changes in cabin pressure and viola!  I now have a retracted ear drum.

Basically your Eustachian tube controls the pressure.  But it was so inflamed, it literally “sucked” my ear drum inward.  Hence my off-the-charts vertigo.

I’ve been prescribed steroids which I can’t take till tomorrow morning.  They make you jittery and impact sleep if taken too late in the day.  So one more torturous night, then I can start the meds.

I’m not going cray cray (at least not yet).  But my head is spinning and my brain keeps getting mixed signals regarding spatially where I am.  I can handle many things, but vertigo isn’t one of them.

I asked how long till I feel relief.  And the doctor said, “Oh you will know.  You’ll hear a huge pop and you’ll have an ‘A-Ha moment’.  Only then can the fluid drain.  Amazing just important our inner ears are, huh?”

I told her the meds my GP prescribed and she shook her head going, “Tsk, Tsk–yeah that medicine is harsh.  It knocks you out and totally messes with you.”  I wanted to say, “No shit!  I was comatose after taking 1 pill.  Never again will I touch that stuff.”

So that’s the latest.  Let’s hope this puts me back on the road to good health.  I miss running everyday.  I miss feeling normal.  I miss being fully present for my kids.  And I miss sex and having our weekly date nights!