Sensible Shoes

Steroids make you really really hot and sweaty.  And really, really irritable.  And they take away the filter on your mouth.  And they make you say things you regret.  They do help the MS- I'm back to full feeling in my leg, except for the front portion of my foot and toes.  I still have many more days of pills to take, so we're hoping for the best.

After all the "girl power" surrounding the lumbar puncture, it left me debilitated and run down.  The pain in my back was so excruciating, my mom had to drive me home because I was blind from the pain.  I cannot even tell you the mind numbing pain I was in on Friday.  It was like...  I can't even form words here.  I could not SEE.  I don't know what I was expecting, but I didn't stay on top of the pain.  I wasn't taking the meds until I felt the pain- instead of just getting on a regimen of one pill every 3-4 hours.  When I finally got to that point, that the meds were AHEAD of the pain instead of vice versa, I was able to function properly.  (Not before Liam fell from the middle step and bounced his way to the bottom...sigh.)

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I gave in this weekend and headed to Payless and bought myself some VERY sensible shoes.  I had to have something that strapped the entire way around my foot and was fairly flat.  And I wasn't paying more than $20.

The lines of shoes taunted me- great prices and cute styles.  Pumps and kittens and slings...it was all I could do to focus on the boxes that said "sensible!"  "comfort arch!" "old lady!"  "cankle!"  "birth control in a box!"  Of course the pair I settled with was completely out of my reach, and I was too embarrassed to ask for help.  A seemingly able bodied woman, asking for a clerk to reach something for her?  When the stool is LITERALLY right there?  No, I couldn't do it.

So of course I text Andy.  "I can't reach."  Sad face.  In he comes from the next store, reaches the shoes for me, without saying a word.  A well meaning clerk comes over, "Oh those look comfy!"  Shut your face, clerk.  (NO FILTER.  I BLAME THE 'ROIDS!)

 

The shoes helped me walk better from the get-go.  I was able to un-leech myself from Andy's arm.  I didn't walk out of my shoes.  My knee started to unlock itself.  Amazing what a little $20 pair of comfortable shoes can do for a girl like me.

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I'm a bridesmaid next month.  This weekend was the big shower, and I have to say, it went really well.

Here's Liam and I at said shower:

 

 

Vanity moment: My husband said I looked HOT.  Also, if you look under my left arm (the one NOT holding my son) you can see DAYLIGHT, which means I have my waistline back.  Which means I feel really really good about myself.  There's a lot to be said for that, at the moment.

 

Shout out:  Do what it takes to make yourself feel GREAT about yourself.  Write that novel.  Lose that weight.  Cut that hair.  Buy the shoes that allow you to walk.  Life is VERY VERY short.

Why I wore lingerie to my lumbar puncture...

 

Do you know your name?

 

-Yes.

 

Do you know why you're here?

 

-Yes.

 

Do you feel safe at home?

 

-Yes.

 

Do you have any questions?

 

-No.

 

I was asked these questions at least three times yesterday by three separate people at the hospital.  We arrived in Harrisburg at 7:30AM, after a quick breakfast stop at McDonalds.  I held Andy's hand the whole way there and the whole way in.

 

When I wake up and walk to the bathroom first thing in the morning, it's the first test of how the steroids worked the day before.  I woke up with about 85%-90% feeling in my right leg and I felt good enough to wear a shoe with a little heel. Not much. Just enough to make me feel feminine.  But it didn't stop me from clinging to him the whole time.

 

Before we left I put on a long black maxi dress over top of a teal under shirt, took off my wedding rings and my earrings and put on my makeup.  Underneath it all, I put on a pair of brand new undies and a nude/black push up bra.  Why not?  Who's going to see it?  Eyeliner and mascara, base and blush.  Out the door.

The phlebotomist was in training.  Poor, poor guy.  I open my sleeves and he sees all the scars from the last six days of steroid injections and IV drops and blood draws, and his hands start shaking.  I internally told myself to just calm down- that he wouldn't be there is he wasn't ready for an actual patient.  Just in case, I asked the older, wiser woman who was overseeing him to hold my hand.  She obliged and her hands were warm.  Tiny win.  And he did a great job!  I praised him highly as I was leaving.

After admission, I changed into the hospital gown and Andy folded my clothing on the bedside table.  Since he's a man, he didn't know to hide the bra.  That's what you do at the hospital and the doctors- you take off ALL your clothing, and then you hide your unmentionables.  But I left it go.  Because the push up bra signified that I was still me, I was still young, I was still sexy enough to wear lingerie to the hospital at 7:30 in the morning.  I cared about me.  Many would give up, but I would no be giving up.

The lumbar puncture was awful, but not that bad, all at the same time.  I'm actually in more pain now, just typing about it the day after.  The lady who did it- Lori- was pretty.  The aids were kind and funny.  I chatted about my son and my husband through the whole thing, trying not to think about the needle going in and the fluid going out.  Yes, I did cry a little, but it was more from the emotion of it all.  The MS.  The thought of the actual procedure.  The thought of what was to come and what used to be.

There's this common misconception that if you can give birth, you can do anything.  Not true.  There are different types of pain- physical, emotional, spiritual- they have their own qualities and their own trials.  Don't let anyone tell you that birth pains are the worst. 

When I came out, Andy was waiting for me.  Bless his heart.  I fell asleep and they woke me up to tell me I was okay to go.  Andy helped me put my clothing on, push up bra first ("That's upside down, sweetheart...okay, THERE you go.") And then the undershirt, and then the maxi dress, and then the itty bitty heals.  He has no idea that what I was wearing gave me such empowerment, even though he was the one dressing me.  We walked out hand in hand and went to get our son and go home to be a family.

Liam clung to me like a little koala while he was settling in last night.  We just let him sleep in bed with us.  Sometimes a little boy knows just what his mommy needs.

Humility 201

This is what steroid treatment looks like. 

This is what your entire family in RI looks like- as you're Skyping your son's first steps. 

This is what pure love looks like. 

For the past six days I've been undergoing this extreme steroid therapy to try and drive out the palsy that the MS is causing in my right leg. So far... Eh. The nurse comes every day. I take time off work- time I do not have pay for- and I lay there for an hour while the chemicals flow into my body and try their best to bring down the inflammation in my right leg. 

I get fairly drowsy after this and I have to relax for a bit, but sometimes I can go back to work. 

The problem lies that I can't bathe properly with that stupid IV in. And I hate to ask my husband for any help with this. So as soon as my mom got home from RI, I made the call. 

"Mom. I need a shower."

We wrapped up the arm and got to it. My mom made no big deal about it, just washed my mop of hair and scrubbed me with a loofah. I felt like a million bucks after she was done. 

Except that I was so vulnerable. I started to sob. I am a grown woman, with husband and son. And my mom is washing my rear end. When is her job over? When can I be a "big girl" and take care of myself? Has MS really robbed me of all of this?

My mom of course just held me when I cried. Dried off my leg. Combed my hair and helped me put on my night clothing. 

The IV is out now and I was able to shower on my own- but there's still this level of humility. That even though I am capable of being on my own, I still need an advocate. Just like my son needs me, I need my mom. And maybe there's a part of a mom who needs to be needed, no matter how old her "baby" is. 

I imagine it was hard for my mom to look at me. To be thinking- my perfect daughter whom I held in wonder 28 years ago, has suddenly been diagnosed with an incurable disease. 

What if I have to look at Liam in 28 years and think the same thing?

Time will tell. I am not MS. Is isn't going to define me. There's no way to know what the future holds so why dwell? For now, I'll watch Liam's first steps away from us and encourage him to run. Soon I'll run after him. 

There's a Monster in my Dining Room

Well THIS thing showed up last night.  Around 10PM, a white van pulled up to my house and a man deposited this into my hands and then left.  I sat it in the dining room and then stared at it.  My husband wrapped his arms around me and our son.  The blue bag has a five day dose of steroids that's supposed to just knock the pain and numbness in my leg clear out of the park.  A nurse will come administer it for the next five days- it will take about an hour every dose.

"I don't want to do this.  I don't want to have this."

"I know,"  Andy replied. "But what other choice do we have?"

"I can rewind time to Monday when I thought this was just a pinched nerve."

"No, no you really can't."

The few people I have told now look at me with sad puppy eyes.  EVERYONE apoligizes, like they feel guilty (but secretly glad it's not them.)  "I have MS."  "Oh!!!  Libbie I'm SO SORRY!"

And everyone wants to know how they can help.

"Well, how 'bout you reach in my brain and make all the spots go away?"

I'll be strong as soon as I'm not so sad.

The end.

Curveball

Originally I was going to write about my son biting and how we are struggling with discipline.  Do we smack a 10 month old?  Do we tell him "bad!" and then punish him?  He likes to push the buttons on the PS3, and he likes to eat the kitty food.

And then my husband and I had an intense falling out.  So I was going to write about that.  About the ins and outs of fighting fair.  About how to know when to get counseling.  About when to leave and when to stay.

And then we started to heal.  And we went to a concert in the park with our son, and the sun started to come out in our lives.  And I was going to write about God's faithfulness and how in the midst of pain, we can find joy- finishing up with some quips about how our son danced the whole concert.

But then I was thrown a curveball.  And I was considering blogging about it, but then suddenly forgot how to write.  I forgot what words meant.  I forgot how to form sentences.

When you lose feeling in an extremity, it messes you up for a long time.  When I lost feeling in my left leg two months ago, I thought it was a pinched nerve.  Sciatica, some said.  The doctor said tendinitis and bursitis were to blame.  Give it time!

When it didn't go away and I changed doctors six weeks later, he sent me to a neurologist...

When I had the MRI and the neurologist called me back to see me within the next 24 hours...

When she told me I had MS...

For a moment, you heart stops. 

My husband's mouth dropped open.

I just stared at her.

You get news like that, and you suddenly don't care that your kid is biting.  You don't care that your husband is currently your best friend AND your worst enemy at the same moment.  You don't even really care about God's faithfulness, as hard as it is to type that.  The room starts to go in and out of focus.  The doctor double checks to make sure you're still "with her" and if you have any questions.

"Here!  Let me ask you questions about something I have no idea about!"

No.

My husband spoke for me, "We'll be as aggressive as we can with this.  How do we start."

The doctor outlined a specific course of action- a mega dose of steroids first, to get rid of the numbness in my leg.  A spinal tap to see the progression of the disease.  A follow up appointment in a few weeks.  We just nodded.  She said the services will call us.  We just nodded.  We left the doctor's office hand in hand- perhaps holding each other up, perhaps holding on to one another so one of us didn't fly away.

I'm sure this blog is now going to evolve into a blog about parenting with MS.  Maybe I'll be able to reach a whole new group of people.  Time will tell.

A Little Blurry

Here's a selfie of, um, myself:

 

Here's a picture of Liam in the ER riding around in his new favorite thing (besides the carts that look like cars at the grocery store):

 

Here's where I came to the realization that I have absolutely no idea what to do with Liam 100% of the time in a confined space.

 

 

On Wednesday during the day, I had an EMG or my right leg- my numb one- and I was in a TON of pain. If you've never had or known anyone who had an EMG, it's TORTURE! It's a two part test where they first shock your nerve endings and then they put needles in your muscles (and then get you to flex) and listen for the sound waves it makes. After about 10 seconds of that, I was done. The test lasted close to 20. It was just torture.

So Thursday I was really sore, but I called and they said to use Motrin and compresses and I'd be okay. Thursday night we were weeding and we were the whole way around the flower bed. We were going to put the garbage out and then go swimming in Liam's little pool. I was putting the weed bags over the pickett fence and I had half my foot on the cement path and half my foot in the flower bed, and my ankle snapped (same one I've sprained twice, now three times) and down I went.

I was just screaming because it hurt so bad. I knew it was broken. The pain was soooo intense. So Andy's all upset because he's like- you've done it again, now you can't hold Liam anymore, etc. He gets me an ice pack and some water, and by the time he gets back I'm passed out. So he called 911, and hands Liam off to a neighbor, (this of course makes him scream) and they come get me and take me to Hershey Med.

I woke up in the ambulance (Andy said after around 20 minutes, I'm not sure how accurate that was because I'm sure it SEEMED a lot longer than it was), and it was terrible, because the pain was so intense, my body was just shaking- like convulsing. Andy said it was terrible. They gave me oxygen and it helped to calm me down. I can hear Andy telling my info to the staff and as soon as I "came to," they gave me two percocet and I was VERY fuzzy. I was completely covered in grass and I was stinky and sweaty and I didn't even have on clean underwear!!! I was breaking ALL the doctor visit rules!

The X-rays came back that it was just a sprain- and the doctor said he would have rather it be broken, because a broken ankle can heal, but a sprained ankle never REALLY gets back to 100% for a VERY long time. So I stayed with my parents for the next week- Liam and I. I slept on the sofa and my mom helped me to get around.

Andy was just awesome. He took really good care of me at the hospital, and I just love him so much. I knew it was good for him to have a few days and nights to himself. He was sort of able to go and come as he pleased at home. But when I got home, I saw he hadn't changed the sheets, and my side of the bed had things on it. Boy if I was sleeping alone for a week, I'd take over the WHOLE bed!!!!!!!!!! I guess old habits die hard, and that's a good thing ;)

So that's my story. And also why I didn't write last week :-/

 

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I do need to say that if I ever doubted my husband's love for me, I was sorely mistaken.  When I was passed out, I was going in and out.  And I could hear him in a panic.  I could make out his voice among the paramedics.  I could hear him repeating "Oh God, Oh God" over and over again.  I could feel his hand on my arm.  I could hear the EMT tell him he wasn't allowed to help lift me.  I could hear the panic and worry and anxiety in his voice.  I heard him say, "She does all of this stuff, I don't know what to do."  When I woke up in the ambulance I started sobbing, not from the pain in my body, but from the pain I had caused my husband. 

 

I didn't try it.

 

But I do need to say- in some strange way, it strengthened our marriage in a way nothing can express.  I felt like I realized what he meant to me and I to him.  A week sleeping apart- a week of him coming to pick me up and take me away like a date- a week of him tending to me and our son (we went out to eat, and he had to change a poopy diaper in the public bathroom...).  All eyes were opened as we saw each other so vulnerable.

 

Blessing in disguise.

Nursery Floor

 

 

You would think that when your child comes home like this ^^ that it would be a SHOE IN for a full night's sleep.  Turns out, this is untrue.

 

 

Yesterday was Liam's baby dedication as seen above.  (I'll have better pics later.)  But it was HOT.  You like how we all coordinate?  I feel like I'm slouching...  Anyway.  We had about 50 people there, and it was amazing!  The ceremony was short and sweet.  We sang "Jesus Loves the Little Children" at the end and Liam made the sign for "more" after we were done singing.  More singing, please!  The cake was yummy and the decorations were noted.  I love when people say, "Everything looks beautiful!"  Because if you know me, you know how much thought I put into everything I do.  If you can see by the pic above, Andy and Liam had coordinating shirts on (same colors, different plaids) and I had on a dress with jewelry to match their outfits.  Which of course matched the cake, and the balloons, and the plaid napkins...  Obsessed much?  No, never.

 

 

I swear my son's feet never touched the ground all day.  With both sets of his grandparents around and 50 of his closest family and friends, the boy was well loved.  Which translated into a very clingy boy for the rest of the day, and the rest of the weekend.  The child refused to be put down.

 

Of course his sleep schedule is completely messed up, since his grandparents are down. MIL always told me how they would even leave parties to make sure the boys had their naps and got in bed on time.  This apparently does not count for my child.  Every once and a while, Andy and I would stop chatting and look for our son.  Sure enough, my MIL would have him off somewhere else in the park.  Poor kid didn't even get to enjoy his own party.

 

So that's why I'm asleep on the nursery floor.  I use the word "asleep" VERY lightly.  I'm stretched out on my college bed comforter with the boppee nursing pillow under my head.  Liam has somehow burrowed his way into the comforter and he is snoring soundly.  I'm sure I'm going to pay for this tomorrow.  But it's amazing what you'll do to get your child to sleep through the night.