The Not So Terrible...FIVES?

I always hated the expression, "the terrible twos."  It seemed so rude and disrespectful to the poor child.  And it seemed like a projection of what the world thinks is "typical" behavior of a two year old.  You know - when they start to get into all kinds of mischief and trouble?

Well, I'm here to tell you - I have discovered that the "terrible twos" do not discriminate.  They aren't just for two year olds.  And, as it turns out, they are not so terrible.  At least in this house.

Gavin, it seems, is going through the NOT so terrible FIVES!!

Last night, as I took - ahem! - a bathroom break, this happened...

I wasn't gone very long (how long is just none of your business, thank you!) and before I left the room I did a sweep with my eyes.  You see, Gavin has been cruising the counters and the kitchen island looking for ANYTHING he can get his hands on lately.  He pulls it down to look at it, put it in his mouth, shake it and/or throw it.  Sometimes it's all of the above and in that order!  But last night I saw nothing that he could potentially ruin, break or hurt himself with - so I thought it was safe to go to the loo.

When I walked back in the room he had a tub of VERY concentrated lotion open.  He was laying in it - smearing it all over the floor and smiling.  I ask you - how in the world can that NOT make you happy?

First of all, there's the mystery of how he got the tub open at all.  Then, there's the whole sensory component.  He obviously loved how it feeled in his hands - and everywhere else!  It was everywhere.  Globs in his ear... in his hair... on his clothes... in his mouth... all over the floor... all over the glass front oven (which was really tough to clean!)... and all over the cabinets, counter tops and even up his nose.  He was SO pleased with himself.

I love that he's acting this way even though it really keeps us busy and on our toes!  Gavin used to be the easiest one.  If you left the room you could pretty much guarantee that he'd be in the same spot when you got back.  But this new Gavin is so much better.  I'm so encouraged that he's moving up the developmental ladder.

You can see the difference in him in this little video.  He's purposefully playing "Peek a Boo."  And when I try to change to another activity, he clearly shows me he wants something else!  Take a look...

It's been very cold and rainy all week.  I suppose we're experiencing London weather to feel closer to Ed while he's there.  He will be coming home tomorrow - yay!!

The weather has not been great for my arthritis, unfortunately.  Yesterday I paid a visit to my Rheumatologist and we are planning to get me set up on the Orencia infusions just as soon as our insurance authorizes it.  I've been having some pretty bad days.  A few mornings I was afraid carrying Gavin down the stairs!  My knees ached so bad - and he is so heavy and squirmy - I was fearful that one of my legs would give out.  It really sucks to have arthritis like this at my age.  I'm not that old!!

The boys and I have enjoyed our "alone time" this week... and I have lived a very envious single life each night while Ed has been gone.  Why, just last night I was in my pajamas and black socks mopping up lotion from my kitchen floor while listening to the Dixie Chicks.  

It's okay to be jealous.

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.