Blizzard in my Bones...

Perhaps you heard - there was a bonafide BLIZZARD where we live! The sky dumped close to 28 inches on our area. It was so fun to watch the snow fall outside our windows. 

And at one point, we even went out while it was snowing! 

It was windy! 

So windy that Brian almost blew away!

It was freezing! 

But it wasn't too cold for Hope to bring out her stroller and take her snowball baby for a walk! 

We laughed until our tears froze on our cheeks and then quickly rushed inside for hot chocolate. We waited out the storm by playing inside and crossing our fingers that we wouldn't lose power - which we didn't! While we were playing in the basement, I had to capture Brian and Hope's new party trick - Tandem Sliding. Ha!

When the snow seemed to slow down a bit, we got brave and decided to open the front door. It was an incredible sight!!

Ed was up much of the first night with our tractor that has a plow attachment and a snowblower to try to stay on top of the snow while it was still falling. Eventually, he had to throw in the towel. It was so cold and so windy that his face literally froze. An interesting alternative to Botox, but I'm not sure it's sustainable long term. But I digress....

By late Saturday afternoon the snow stopped. We spent all of the day hanging out inside. We watched a movie (Ice Age, ironically!), played some games and I even started to take down some Christmas decorations. I know, I know - it's early to take down the Christmas tree... but I thought I'd get a jump on it. (ha!) After the kids went to bed, Ed and I went back out to attempt more snow removal. I did my best, but I had to give up after about an hour outside. I was worried that I would wreck my body and joints before the next day which I knew would be all about playing in the snow with the kids. Ed ended up hiring someone to plow - thank God. Our new driveway is long - and I didn't want to sit inside worrying about him.

The next morning, Brian woke up and was stunned when he looked out his bedroom window. He's never seen that much snow in his entire life. I knew this was going to be a weekend that would be embedded in his memory forever. I wanted him to be able to look back and remember "the Blizzard when I was in first grade" as super fun!! Hopefully, he will.

Round one outside was during Hope's nap in the morning. I wanted him to be able to play with us without either of us being pulled away to help Hope. I loved watching him make snow angels!

Also fun? Watching him attempt to get up afterward.

He made what he called a "castle and these are the guards, Mom - and can you stop singing "Do You Wanna Build a Snowman now, please?" 

Well, he told ME!

He built a tunnel with Ed...

And we went for a little walk...

Oh, and he climbed a mountain. No biggie. Ha!

After lunch, it was Hope's turn to go outside. As I expected, she was completely fearless and up for anything! Our driveway still had snow packed on it so I took advantage of the hill and sent her on her first sled ride! As you'll see at the end of the video, she was definitely into it.

Brian got in on the driveway fun, too!

We did it again...and again...

and again.

Hope even took ME for a sled ride!!

She also took me - and the sled - but not me ON the sled this time - for a walk down our quiet, empty street.

There was so much snow lining both sides of the street that she couldn't even see over them to find our house!

Brian couldn't wait to show Hope his tunnel and insisted that she crawl through it.

Not going to lie - I was a little afraid she would fall into a snow drift and I wouldn't be able to get in and pull her out! But she made it through and came out smiling, as usual.

Hope went on the sled a few more times before Ed took her inside. I thought she had been out long enough.

 It was really cold! But she is so tough, I'm sure she could have hung out a lot longer than I let her. But worrying is my job!

Brian and I stayed out for a little while longer. I loved watching him sled down our front yard. His laugh is always contagious.

All of this - this whole post - seems like the picture perfect scene, doesn't it? Blizzard! Family time! Playing in the snow!!

But the reality is - I literally could have burst into tears at every turn. I never know when my Rheumatoid Arthritis will flare up - or if something I do will trigger or exacerbate it. Unfortunately, Sunday morning I woke up feeling like my bones were crumbling. The pain was so bad - and the swelling, too - that I started a round of Prednisone along with pain medicine to help. (It didn't yet) 

Having RA is what it is - I can't change it. I try to approach it like I do everything else in my life - with a positive outlook. But I have to tell you - it can be very depressing. I have a chronic, progressive disease. I try not to complain on a daily basis - or bring it up much at all to Brian, especially. I do this because it will only get worse. If I can't hack it now - or show up in all areas for my kids, especially physically - then I'm screwed!! More like THEY will be screwed. I feel like I need to create a lot of long lasting memories of an active, engaged, fun, happy Mom now just in case it gets to the point that I really can't do as much down the road.

If you know even a little bit about me - it crushes my spirit to even think this way.

So, when it's especially painful - like it was on this glorious snow day - this possible "once in a lifetime blizzard" - I go into a place mentally where I can block out the pain and focus on being with Brian and Hope. Does that work? Well, not really... but sometimes I can distract myself from feeling. I get them in and out of all the layers of their snow gear - not an easy feat and it takes me quite a while. I play outside and try to avoid climbing into the snow where it takes up a lot of my energy to trudge through the deep drifts. I help pull Brian onto his sled and hold him there until he counts down for blastoff. I know I end up paying for it later, but that's okay. It's okay - at least to my heart, not my body - because creating a lot of long lasting memories of an active, engaged, fun, happy Mom now... just in case... is just as much for me as it is for them. And if they don't remember, it's written here with photo proof. 

"Mommy survived the blizzard in her bones during the blizzard of 2016 - and she was so happy to make memories with both of you."

(p.s. - Not looking for arthritis advice. I'm holding off on any RA meds as I'm still nursing Hope... and I'm under the care of a fabulous rheumatologist.)

Enough is Enough is Enough...

Today, I'm entitled to a pity party.  Says me.

Yesterday morning I met with my Rheumatologist.  It has been a long time since I had an actual appointment with her.  It didn't make sense to see her during the "trying to conceive" years - I wouldn't have gone on medicine.  But now that those days are behind us... and my RA is getting worse... it was time. I'm glad that she was a friend before becoming my doctor - it made yesterday's news easier to take.

Raise your hand if you've had enough of the Leong roller coaster ride and want to get off.

Yeah, me too.

So the good news is - I still have Rheumatoid Arthritis.  (Hey, I'm trying.) The bad news is - I need to start on medications to prevent joint damage.  What medication will be decided after I get blood work and X-Rays, which I'm getting tomorrow morning.  It will likely be a monthly IV infusion of Orencia.  I'd love to hear from anyone who's taken this!

The other good news is - I have an explanation for the other terrible symptoms I've been dealing with.  The bad news is - it came with the diagnosis of Fibromyalgia.  

I really didn't want to be diagnosed with anything... but especially not Fibromyalgia.  There's such a stigma attached to that.  People think it's all in a person's head... that the person just needs to relax... that it's not real... and on and on.  My doctor told me it's very real, which I knew, but I suppose I was nervous about the judgement.  Then it dawned on me.  Insurance companies have a diagnosis code for Fibromyalgia.  And insurance companies only have diagnosis codes for "real diseases."  So, there you go.

But really.  I think there was one circle of purgatory that Dante left out.  The one for Fibromyalgia sufferers.  Believe it or not - I try hard not to complain.  If you live with me or see me often, you'd never know what I'm feeling physically.  I rarely talk about it - even to Ed.  Every so often I bitch about it here, but not that much!!  Today, I'm letting it out so you have a glimpse into how it really feels to be me these days.

Did you ever have the Flu?  You know the day before you actually get sick when you feel kind of like a Mac Truck hit you?  You can't shake the tired feeling... you're in a daze... it takes all of your energy to do anything... nothing you try 'wakes you up' or makes you feel better?  That's pretty much how many of my days feel.  Now, it's not every single day.  Fibromyalgia is elusive - it comes and goes without any rhyme or reason.  One day I'm feeling great and making plans... another day I'm feeling lousy and canceling the same exact plans.

When my alarm clock goes off in the morning, I'm insulted.  No matter how early I go to sleep - it never feels like enough rest and I just can't believe that stupid black box has the audacity to expect me to move.  But I need to turn it off - so I lift my arm which weighs about fifty pounds and wince while it's on its way to the button.  If I stall, I'll just delay the inevitable, so I rely on adrenaline to get me up.  This is when it really sucks.  Between the Fibromyalgia and the Rheumatoid Arthritis, mornings are just awful.  When the soles of my feet hit the floor - it feels like fire.  Like someone set my poor little piggies who just wanted to get to the damn market on fire.  And my knees feel stiff as boards.  I'm always grateful that Ed's still sleeping because watching me hobble around the bed into the RUDE and BRIGHT bathroom is not sexy AT ALL.  Well, unless you're into that type of thing.  If that's the case, this may not be the blog for you.

I can't even believe how tired I am in the morning.  Most mornings I forget I have medical issues and I reprimand myself for getting to bed late or staying up reading too long or not being as energetic as I used to be or PULL YOURSELF TOGETHER, KATE!!  It's very depressing to feel so depressed - especially when you don't think you're depressed but then the thought that you FEEL depressed when you're technically NOT depressed then, in turn, MAKES YOU depressed.  Did you follow that??

I sleep walk my way through a shower - if I even take one.  It takes an extraordinary amount of energy to get ready in the morning.  I'm not even kidding.  Many days I'll just throw on a baseball cap if I'm not going anywhere.  And sometimes I put on the baseball cap even if I am.  I just don't have the energy to care.  Even my eyeballs hurt, which is one of the main reasons I wear my glasses (besides conveniently hiding my dark circles - brilliant, right?).  

Before I leave the bathroom, I make a last glance at the clock and find myself counting down the hours until I can get in bed again.  And no, not for sexy reasons.  (Well - sometimes for sexy reasons, but mind your own business)  Then I berate myself again - "Why would you wish your day away when you have those adorable children to spend it with?!!?"  The guilt is terrible, which is why I push through all of it to appear like everything is fine.

Morning diaper changes and dressing truly makes me want to weep.  My fingers and hands hardly work - and getting down on the floor is excruciating.  But I want to be present and normal for Gavin and Brian - and pushing through the pain and fatigue won't kill me.  And it's truly impossible to feel more tired at that point, so who cares.

For the last year, I've noticed a decrease in my drive.  I used to be more on top of things - therapy, thank you notes, making plans with people, making my sons' birthday videos, I could go on and on.  I thought for some time that I may be depressed.  Then I thought, maybe I'm just bored of doing all of that or it's unnecessary extra stuff.  Then it was, maybe I'm getting old and forgetful.  But there's a real symptom called "Fibro Fog" that causes difficulty in remembering, concentrating and...oh, I forget what else.  Basically - you're turned into a space cadet.  But not the sexy kind.

One day I thought, "Maybe I should exercise."  That was one quick nano second before I remembered getting out of bed,  which was equivalent to a freaking triathalon.

I can handle the pain (with pain meds that help me get through the day, unfortunately) - but what is hard for me to handle is the guilt.  I want to be the Mom that does more more MORE.  My symptoms lately have been so severe that I find myself putting the TV on so the kids are amused while I sit and stare at the wall.  (It does make me feel better that the wall happens to have their pictures on it)  I have been cutting so many corners because I feel like crap.  But again, if you're around me - you'd think I was just a happy, positive person who happens to be lazy.

Part of me is grateful for a diagnosis that's real.  It will keep me from beating myself up and thinking I can "snap out of it" if I just wanted to.  Now I'll be able to remind myself that "snapping out of it" isn't possible.  And I'm very grateful to Dr. Trish who I know will help me feel a lot better - maybe even 100% - because I don't want to go on medication for this AND my RA.

But much of me is pissed right now.  And I feel I have every right to be.  If I take a step back and look at my life like a stranger would - I'm shocked.  The amount of things that I've been asked to handle has been MORE than I think I deserve.  One thing after another thing after another.  I'm freaking sick of drama and issues and disease and hospitals and therapists and infertility and - need I go on?  It's enough.  

On top of all of this, we have Gavin's genetic results hanging over our heads.  I promise I'll talk about it soon - perhaps as early as next week.  Today I met with a neuromuscular doctor at the hospital that we've never seen before - along with Gavin's neurologist - and we came up with a game plan for what the next steps should be.  But we need to wrap our heads around everything before I even try to explain what's happening.  Please keep all of us in your thoughts and your prayers?  Enough is enough, I say.

One last thing.  My post "On Loss" seemed to touch a lot of people, for which I'm so grateful!  But there was one comment in particular, in my guest book, that I can't get off my mind.  Please go and read the beautiful comment from an anonymous, self proclaimed "old woman" that moved me to tears.  I wish I knew who she was...where she lives...how old she really is...I want to know you!!  If you are reading this and want to write to me, I'd love to become your friend.  Your note made my night and I'm so glad that my post helped heal your heart.  xoxo

It's Time...

Last night, as I gave the boys a bath after their haircuts, I found myself struggling to get up from the floor.  My knees were so stiff.  And last night, the pain in my hands and the strange sensation in my arms woke me up several times.  If Ed hadn't left for work before I even woke up, I would have asked him to help me get dressed. Not every day is like this, thank God.  But today has been pretty rough.  I am so achy...everywhere.  The pain is in all of my joints - but because it's so painful it makes you carry yourself differently to compensate.  So I end up with back pain and shoulder pain and it's really all a big mess.  Last night I sat at the piano, a place I used to spend a lot of time.  I don't mind saying - I was really good at one point.  My favorite piece to play was the Pathetique by Beethoven.  But that's in the past for sure.  As I sat there, I stared at my fingers.  I am starting to see some of the deformity around my knuckles that comes with Rheumatoid Arthritis.  There are mornings that I can't get my wedding rings on.

I think it's time.

I called my Rheumatologist.  I explained the situation to her secretary and told her I'd like to make an appointment.  Perhaps it's time to consider my options with medications.  I really can't do this anymore. I told her that I'd avoided medications - they are pretty toxic after all - because we had been trying to have a baby.  She said that yes, it had been a while since I was there last.  Two years, she said.

Gulp.

That hit me like a ton of bricks.  We had been trying...desperately...for two years.  Blah.  

Let's move on.

So I have an appointment set for mid-October.  I would love to get back to regular visits with Dr. Trish, but I don't know how I'll manag that yet.  Between pick ups and drop offs and Dr. Trish's schedule that's mostly morning appointments...I'm not sure I can make it work.  So - I turn to you.  For those of you struggling with RA or with lots of knowledge about RA, I'd love to hear your thoughts on treatments.  What do you take?  What have you experienced as far as side effects?  Do you do shots or IV infusions?  What have you been told?  Tell me everything!!

I'm feeling pretty depressed.

There were two things that cheered me up today - a Sara/Sarah combination!

Miss Sara was amazing with the boys today while I sat in the corner and stared out the window.  Just kidding.  I was staring at the ceiling.  Just kidding.  She really helped me out with diaper changes and lifting and buttoning pants (the boys, not mine!) and comic relief.

After lunch, we had a goodbye visit from Miss Sarah!  For those of you who don't know, Sarah was one of our original helpers and really became like a daughter to me.  It's time for her to head to Turkey for an extended mission trip.  It's likely we won't see her (except on Facebook.  Thank God for Facebook!) for several years.

But miles and time zones can't separate her from our hearts.

We're proud to share "Our Sarah" with the people of Turkey.  This girl is going to change the world.