Confirmation

We knew the likelihood when the neurologist first pronounced the words: indications of Multiple Sclerosis.
All of the signs were there.

It seems a bit twisted to put my husband through more tests, especially the spinal tap, but doctors do like to have confirmation.

This time, there was no hesitation as the doctor entered the room. He flipped on the computer screen, turned off the light, and began pointing.
See this brain MRI? These are the lesions that got you referred to me.
See these spinal tap result numbers? Down here is where we like to see results. Up here is where you are.
See this spine MRI? These are the newest lesions. They're multiplying.
Everything. Every single result confirms Multiple Sclerosis.

And, folks, that's just it. There is no "test" for MS. There are indications. But, no test to give a positive or negative result.

However, when every single test indicates MS, there's no turning back.

So, we held hands & listened.

The run-down of the latest meds. The recommendations of the doctor.

The entrance of the nurse with her matter-of-fact attitude. How many shocked faces like ours does she see each day? As the doctor confirms our worst fears, then flees - & she's left to pick up the pieces.

Here - here is a book & pamphlets & a barrage of verbal information.

Here are the explanations of the meds - the nurse will come out to your house to show you how to give yourself your weekly shot. This is the list of side effects.
These are the meds we've already tried that didn't work for you.

Information overload.
Numbness.

My husband sat by my side, but I don't think he was there.
Afterwards, he asked me to go over everything that was said. Apparently, he heard almost nothing after the doctor showed us the film of his newest spinal lesions.

I've been a bit obsessed since then. Researching online. Reading blogs. Looking for "alternative" treatments.
It's been a never-ending emotional roller coaster of ups & downs.

My husband appears to be digesting the news. He's made the phone calls to immediate family members.
They've taken it pretty hard, which sucks. He needs them to be strong for him. It's not fair for him to have to reassure them. But such is life.

He's started a new medication, along with a massively increased dosage of Vitamin D & the addition of a daily magnesium pill. The nurse comes soon to teach him how to give himself the weekly shot of the newest drug. The packages of his medications began arriving earlier this week. We've cleared a spot in the refrigerator for them.

It's all real now. No denial.

Hello Multiple Sclerosis

I am constantly told that I live a charmed life. I suppose, in many ways, that's true.
I married my high school sweetheart. After over 23 years together (the last 17 of them happily married,) I still call him my best friend. Together we have 3 amazing children. Not perfect, mind you, but intelligent, compassionate, creative, empathetic, wonderful children.
My husband works hard for this family & I am thrilled to be a stay at home mom. For us, this "traditional" way of life has worked. Living on one income has required sacrifices, but we feel it's been worth it. We don't live in the trendiest area, our vehicles are ancient, we love bargain shopping, & the kids won't ever find a long-lost twin at summer camp - but we are present in the moment & we value the little things in life the most.
Little things like road trips, board games or cards by kerosene lamp, living room dance parties, long hikes through nature, visits to amusement parks, days at the zoo, etc. We emphasize both quality & quantity of time.

Time. A word not all of us stop to consider.

Time. Something that we take for granted ...

until we're forced to acknowledge that tomorrow is not guaranteed.

We knew something was wrong years ago. He can't remember things at all. He gets distracted. He becomes dizzy & almost falls down - his left hand goes numb - his eyesight blurs. The headaches are almost constant - chronic migraine, they said.
So I stay home. I run the household & take care of the kids. Because he just can't. He can't remember. At times, he can't function. Who cares if some say being a stay at home mom is easy or "not hard?" You have no idea what my day-to-day life is like.

Every time he'd go in to the hospital or doctor's office or ER, they'd examine him & send him home.
Was he imagining it? Was he a hypochondriac? Did we need better doctors? More tests?
Through the years, he's been on every medication imaginable. The depression meds turned my usually happy-go-lucky spouse into a grouchy monster. The meds for vertigo, headaches, exhaustion, numbness, etc. did nothing.
In fact, he ended up in the ER because the pharmacy failed to realize that the interaction of his meds could kill him. That was fun.
The MRIs. The spinal taps. Nothing.
Two years ago, it was still all clear. I sat with him in the doctor's office as they waved that clear MRI film at us. No answers, but no known monsters, either.

Then, the phone call from his doctor to "make sure" to keep the neurology appointment.
Okay. That's scary. And terrifying. Why wouldn't we keep the appointment?
When they showed us the film this time, the white dots were everywhere. Like fluffy pieces of cotton candy.
"Would you please point out what shouldn't be there?" I asked the doctor. "All of this," he answered. "This should be clear."
The white dots - the lesions - on my husband's brain were staring at us.

My husband & I held hands & waited until the doctor 

looked up & spoke the words we now expected to hear: 

MS. Multiple Sclerosis.

I was familiar enough with it. My husband's dear friend died from complications last year. But, another friend has been coping & living life day-to-day for over 20 years.
For every celebrity who struggled - Richard Pryor, Annette Benning - I can throw out a Montel Williams.
I've googled my husband's symptoms enough over the years to have had suspicions - even if neither of us could say the words.

The neurologist is supposedly one of the best in his field. Very matter of fact. No bullshit. Difficult to understand his accent - so we have to stay quiet & focus our full attention. This means we can't turn to our usual coping mechanism of sarcasm & cracking jokes - that just impedes communication.

We now await the results of the latest Spinal Tap to confirm the MRI & blood test results.
Then - what? - our journey begins, I suppose. Although, our journey truly began years ago.

I wish people would learn compassion. Learn not to judge. Just because you can't see or define an illness, it doesn't mean the person isn't suffering.
Just because it looks like someone is living a charmed life, don't presume that you know everything going on. There could be secrets. Illnesses. Inner struggles which they have chosen not to share with you.

Most of our family has no idea of my husband's likely diagnosis. Only a few friends are aware, & we're forever grateful for their help picking up kids, or sitting with my husband in waiting rooms.
I plan to use this blog to chronicle our journey with MS. I feel like I need an outlet of some sort.
The hope is that it impacts our lives so little that I have nothing to write about. Wouldn't that be wonderful?