Who-EZ-Anna

cropped-laura-tindall-2016.jpgI never want to forget that my six year old, Claire, couldn’t pronounce Louisiana. She kept telling everyone, “We’re moving to Who-EZ-Anna.”   We’ve been here almost six months and I’m sad she says it the right way now.

Vegas to Louisiana: It’s kinda a big deal.

I’d still take 100 degrees of dry heat over 80 degrees and humid.  Humidity is no friend of mine.  My 16 year old loves it though.  She says it feels like a warm hug.

The people here are kind.  The food is OH SO YUMMY and there are Crepe Myrtles everywhere.  I am obsessed with Crepe Myrtles!!!! Especially purple ones!

I have a new neurologist.  She seems to be very smart… She’s an MS Specialist and she’s about a mile from my house.  I’m still not taking a DMT/DMD (Disease Modifier) whatever you call it– US uses one term, UK uses a different one, it’s confusing to me.  I did, however, begin something to hopefully help ease some symptoms.  The doc started me on Low Dose Naltexone a couple weeks ago (4.5 mg).  I am cautiously optimistic about it.  I find I can tolerate the heat a little better and have a little more energy. I’m also currently in a sort of bipolar Autoimmune Diet phase.  By bipolar I mean that I love it about half the time and hate it and pretend to not know about it the other half.  I know if I went back to eating a strict Autoimmune Paleo diet that I’d feel much better.

That’s about all that is going on here.  I keep the air on 72 round the clock and everyone else has to wear sweaters and socks 😂.

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It’s been a minute…

I know, I know…. A blog should have frequent posts.  A year later, here I am.  See, when I started this, it was because I couldn’t find another homeschooling Mom who had MS.  I know this for certain because…boy did I ever search.  I wanted to be encouraged and not feel so alone.  I wanted to get ideas, read about someone else having a hard time.  I wanted to cry and laugh.  I just felt like it was needed.  But, after writing a few posts, I began to feel quite vulnerable.  Honestly, all of a sudden I panicked…. Do I want people all up in my business like this?  Do I really have anything to say?  Do I sound like an idiot to someone who has had MS for years?  I still feel all of that, but I’m back anyway.  A lot has sure happened in a year.

Friendly neighborhood hospital

Madness.  My husband left for the weekend so my body decided it would be a good time to go ape crazy.   I was feeling a little more numb than usual and my brain felt heavy and woozy.  I know those are terrible descriptors, but I can’t think of clever words at the moment.

After a day of swimming…. you’re thinking-  heat did it…. I don’t think so.  I wore my cooling vest filled with ice packs AND dipped in cold water just for extra measure.  I stayed in the shade, drank 3 liters of water, and stepped in the freezing cold pool regularly.

Back to my story.. So after swimming, I was driving and kept feeling like I was going to black out.  I had strange almost electric-like seconds of darkness WHILE DRIVING my kids. So, ended up at my friendly neighbor ER.  That was a terrible experience.  CT Scan, EKG… They sent me home.  Once I got home things got super wicked weird.  Numb all over, brain felt full and like cottony.  My vision on the left side started going wonky again.  My eyes were jumpy.  Then guess what?  I peed on the floor.  Yep, I did.  There was no pee, then it was all over the floor.  My body was so numb I didn’t even know I had to go.  It was most disturbing!  And kinda funny too.

I talked with a doctor from my primary care group.  He sent me back to the ER.  There, I began a 3 day IV infusion vacation of Solumedrol steroids.  I had essentially six MRIs in one, an EEG and lots of labs.

The result?  Acute Relapsing Multiple Sclerosis

I’d been told MS before, but the “Acute Relapsing” was a new.  The neurologist on call was super sharp.  He knew his MS stuff.  The sweet, sweet lady who did my MRIs also has MS and spent lots of time encouraging me and then showed me all of my brain and spine.  She showed me on the post contrast images where all the active inflammation was on my brain.  She then recommended her neurologist and we talked about support groups.

I told the neurologist I’d give Disease Modifying Drugs a try.  He said it was time to start fighting the MS.  So I suppose the next step is learning how to do self injections THREE times a WEEK!  I know it’s not a big deal, lots of people do it, blah blah….. I don’t like shots, ok?

So there it is.  I’ve been home now for three full days.  I feel worse now than when I went to the hospital.  Im not sure what that means. The nerve signals in my body are all jacked up.  I’m having shocking electrical nerve pains.  But I’m so thankful to also be feeling sensations that were numb for months.  I don’t know if it will last, but I’m thankful to just “feel” things, even though it hurts.  I’m still feeling like I’m going to pass out several times an hour.  I have ringing in my ears and my vision is still strange.

I’ll keep you updated.

Psychological Testing -MS Study

Tomorrow I will leave for UCLA to have my first appointment for an Estriol Study in MS Patients.  My first appointment is Psychological and Cognitive evaluation.

Wait…. What???  I’ve never had any kind of psychological test.  So, this is what I am imagining:

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This looks like a DOG with RABIES and drool flying from the sides of his ugly face!  He looks angry and he’s coming for me!

I’m not sure I will pass this test thing.

Wish me luck.

Cognitive issues and fear

“It’s the damage you don’t see, the damage in your brain… The slow decline of cognitive ability…that’s what is concerning, maybe more than the physical disability- or lack thereof.”

This is what I’ve heard several neurologists say (all in slightly different wording) that has me a little curious.  What if they ARE right?  What if my decision to avoid Disease Modifying Therapy (aka MS Drugs) for the time being is costing me dearly in brain function?

This is particularly scary to me because I homeschool.  My youngest is five.  I need to be sharp enough to homeschool for quite a few more years.  I’ve had several situations where I can’t seem to remember how to do math and reading becomes difficult.  My understanding (which is still limited as I am new to MS) is that each relapse, while it somewhat resolves, leaves some potentially permanent damage.  It isn’t always seen as physical disability.

I’ve talked with quite a few MS patients and, so far, I’ve only met one who was happy with their treatment.  Most complain of various side effects and none seem sure that it is even helping.  Still, I wonder….  What if one of these injections or pills could help prevent damage?

I would love to hear from some people who like their medication and do believe it is helping.

Jericho was Loud

Today I picked up my oldest little man from his Sunday School class.  His teacher told me he wasn’t himself today.  He bolted out the door (which isn’t abnormal).  He usually goes outside where it’s a little less chaotic and waits.

So I went to pick up the other kids from their classes.  As I walked through the crowded hallway, I saw him hunched in the corner… Squatting with his nose facing the wall and hands over his ears.  This isn’t the first and won’t be the last.  But today something new happened.  It caught me by surprise and I was overjoyed by it.

A sweet friend of mine was standing in front of where he had hunched down.  She was using her body to hide him and protect him from all the people wanting to make sure he was okay.   I was so encouraged to have an ally.

I got him out to the van and rode in the back with him on the way home.  He just sobbed.  He’d told his teacher he had a headache, but I knew this was much more.  When we got home, he went to his room and hung out where it was quiet for a while.  He later said that they had studied about Jericho.  Ohhhhhhhhh.  It all makes sense now.  Part of the lesson was all the kids making as much noise as they could.  I knew that must have been wretched painful for him.  Being stuck in a room with no escape for an hour was tricky enough, let alone everyone make loud noise all at once.

These things happen. There’s no way to predict when or where, but they happen.  He’s perfectly fine now, even smiled when he told me some details from the lesson.  We recover, we move forward.

I just keep thinking about how God placed my sweet friend in that hallway at the exact moment and how she jumped in to help him.  This is why connecting with a church family is so unbelievably important.  We SO need one another.  God has created some amazing people and placed them around us.  All we have to do is be real and let them in.  The Blessings are Astounding.

*I feel I should add a little edit here.  I read this post and wondered how I might feel reading this if I were his Sunday School teacher or any of the kids and adults that were concerned about him in the hallway.  First, his Sunday School teacher is an amazing woman.  She is also an excellent teacher and loves these kids.  I’ve also never talked with her about possible Autism or his Sensory issues.  She has a great class and they all love her (especially my boy).

What do you have left?

I ask that at least twice a day.

 

IMG_6693What do you have left?  Sometimes I ask because they’re getting on my nerves.  Sometimes I ask because I want to go to Costco and wanna know how guilty I should feel leaving before the school day is officially over.  But MOST of the time it’s because I typed up a perfect weekly schedule on a fabulous spreadsheet and I want us to stay on schedule.

It doesn’t matter why I ask.  The question always comes with a sliver of Mom guilt.  Sometimes I wonder, “If I have to ask them what they’ve done in school and how much is left, am I too hands off?”  “Is there a disconnect here?”

I’ve heard this from other Moms of older elementary and middle school kids.  If the work is getting done and it seems smooth, we start to question ourselves.  Maybe they don’t have enough school or it’s too easy?   Am I lazy?  Why aren’t they complaining more?

The real answer?  EVERYTHING is JUST FINE.  We listen to them read.  We check their Math (or at least their grade).  They are learning what the curriculum intended they learn.  We make sure they read their Bible.  We ask them reading comprehension questions.  I mean….  Seriously, things are JUST FINE.  Probably better than fine.

They should be learning to follow a schedule and make decisions about time management.  That’s one of the great things about homeschooling.

Maybe we should just RELAX and be thankful they aren’t struggling right now.

(And by the way….. Nothing wrong with a field trip to Costco now and then.  It’s Life Skills.