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.

Garden of Achin'...

Yesterday had me down for the count.  A long, "One Mississippi, Two Mississippi...Five Thousand Mississippi" type of count.  Why?  I'll tell you.  But for all of those people (me included) that tire of hearing about my ridiculous physical issues - now is your chance to run away from your computer.

This week I felt a spurt of energy!  So, Wednesday - when the boys went down for their afternoon naps - I grabbed my gardening gloves and went outside to weed.  There was only one big job which was to cut down my large daisies for the season.  The rest was "a little weed here - a little weed there" - not hard at all.  I was psyched.  Very psyched.  I felt normal and was so happy to have done something other than perfect the look of a slug.

The next morning, yesterday, I was not psyched.  At all.  I woke up in serious pain.  It took me a while just to walk to the bathroom.  Ed was concerned and told me if I needed him to come home, he'd figure it out.  He was hoping I could get an appointment with Dr. Trish or Dr. Kang, but I couldn't.  The pain wasn't touched by a strong pain med plus a strong prescription Tylenol.  Ed hugged me as I cried uncharacteristically and saw him off to work.  I was so sad.

I had a chat with the boys and told them that Mommy wasn't feeling great.  I used words like "achy" and "sore"... and heard them repeated back to me all day by Brian.  "Mommy isn't feeling good.  You're achy, Mama?"  "Gavin, Mommy is sore.  Right, Mama?"  It seemed like they were "extra good" all day, as if they sensed that I was struggling.  It was so sweet.  And it totally sucked.  The boys pretty much watched PBS and movies all day long.

I have to face it - I can't do the things I used to.  While getting out of hard labor sounds awesome, it's really not when you're physically unable.  

So, that's why I bailed on the journal yesterday...in case anyone was wondering.

In other news, the boys are GREAT!  Brian is still doing such a great job on the potty.  He had an accident today that was probably my fault.  I tested him during his afternoon rest time and he peed in his bed.  In retrospect, it really was way too early to test him.

Gavin is as sweet as always and hasn't wasted any time getting his strength and his great attitude back after his long hospitalization.  Now I just need to get his weight back and we'll be all set!!

We're Turning A Corner!...

8am:  I saw a smile.

Stay tuned...

(Come on.  You can't tell me that wasn't worth of it's own post.)


***

9am:  I think we've turned a corner.  Gavin's last dose of Toradol for pain was at 1:30 this morning.  He could have gotten it when he woke up, but when he gave me that weak smile I told them to hold off.  So far, so good!


Gavin's laying sideways in bed watching Little Einsteins with his arm around his new favorite stuffed Beagle.  A gift from his friend, Addie!

The doctors just did their rounds and were all in agreement that Gavin can leave the intensive care unit TODAY!  At some point we will be moved to another floor.  As soon as the private corner room with a view is ready for everyone's favorite patient, I'm sure.  They are going to start weaning him off the Vapotherm slowly over the next couple days until he's able to keep his oxygen up on his own.  And today we will really encourage him to eat and drink.


Ed is coming out this morning with Brian.  Now that Gavin is in better spirits and less "frightening" looking, I think it would be good for them to see each other. Then I'll take Brian home and spend the day with him before coming back to the hospital for the night.


Please cross everything that everything goes according to plan!!  Today has the potential to be a great day.


***
10:20am:  Brian arrived!!

Brian was VERY happy to see Gavin and had lots of questions.  What's that for?  What's this thing?  What's in his nose?  He didn't seem scared at all.

 Gavin didn't have any smiles after this morning, but I really think the presence of Brian lifted his spirits.  So much so that he started DRINKING!!!  Just little sips, but it's a start!

Ed lifted Brian up to look out Gavin's window.  Something even I hadn't done until today.  The hospital is under construction for a huge remodel so it was a big treat for Brian to see all the trucks and construction workers!

Brian and I are on our way home while Ed and Gavin move to his new room.  We're going to the same floor where Gavin spent months as a baby - 3E.  I know we'll see lots of familiar faces!!  I'll write more when I get back tonight after I get Gavin's progress report from Ed.

***

I enjoyed every millisecond of my time with Brian.  From the elevator button pushing on the way down...to the stop in the gift shop on the way out for the biggest, bluest lollipop Brian's ever seen...to the chat on the drive home...to our afternoon of coloring, cars, stickers and giggling.

Kinda like this...

I asked Brian on the way home what he would like to do with Gavin when he comes home.  He said "Ummm....Gavin to laugh."  I asked if he wanted to make Gavin laugh and he replied, "Maybe giggle."

My Mom met me at my house with lots and lots of comfort food to bring back to the hospital and leave at the house for Ed.  (Homemade potato soup - divine!)  Near the end of my time at home, Brian had a bit of a meltdown.  He buried himself in my neck and just sobbed and sobbed - near hyperventilation.  I think, even though he was happy and we had fun all afternoon, it was his way of "letting it all out" and I didn't try to stop him.  We went up to my bedroom and sat in the rocker for a while.  I asked him if it's been hard for him to miss Mommy and Gavin.  He said yes.  I told him it's okay to be sad.  That I was sad, too, and missed being home with him.  I asked him if he wanted to plan a party for when Gavin and I got home.  We planned to make cupcakes and get balloons and he said that it had to be Mommy and Gavin and Daddy and Miss Sara and Brian.

Done.

When I got back to the hospital, Ed reported that Gavin had a bit of a tough time with pain.  That was the only bad news, though!  He ate yogurt, drank Pediasure, Kefir and was smiling away.  I couldn't believe it!!

But then - Gavin proved it to me.

I fixed him a big dinner and was shocked at how much he ate.  This is all good news.  

The only hiccups came from his IV and his Oxygenation.  When the respiratory therapist attempted to turn down the setting on his Vapotherm, he "de-satted", requiring her to turn it back up.  And then later, when the nurse was getting ready to give him his IV meds, she wasn't sure she was comfortable with the IV site.  She called in the nurse manager and the two of them had to break down the IV (which pretty much means remove the thousands of layers of tape so they can see the actual needle.  which also means torture Gavin.) to get a better look at it.  After some manipulation (which meant crying, yelling, sweating and near gagging from Gavin) and flushing they thought it must have been a blood clot and kept the IV.  Thank God.

Gavin could get his medications orally, but that can be a crap shoot.  Getting his Lasix and his antibiotic through IV is a sure thing.  As long as the IV works - I'd prefer he get his meds that way.  But if they have to pull it - I do NOT want him to get another one.

There's really no predicting when Gavin will go home.  Once they wean him down on the Vapotherm, they'll want to switch him to regular Oxygen.  And then he'll have to keep his oxygen sats up before they discharge him.  It's hard to predict.

He's had a restless night tonight.  Hopefully he'll wake up tomorrow with that smile again.

Forward and Backward - Day Five...

10:15am:  If you read the post I wrote last night, then you won't be surprised to learn that Gavin is pretty miserable this morning.  He's been awake and crying, whimpering and restless since 7am.  I laid with him in the bed and he wouldn't let me leave.  He nuzzled his head into me and gripped my hand as he cried.  I couldn't help crying with him.  Ed just arrived to take over of the bedside comfort session so I could have a break.  Gavin has had it, I think.  He is just so, so sad.

My heart breaks for him.  

We took a few steps forward and a big step back this morning.  Gavin had another X-Ray first thing today and it came back looking worse.  Not the news we expected.  We're hoping that doesn't add on too many days to his stay.

However, Gavin is handling the Vapotherm very well.  He's keeping his Oxygen Sats up, which is great.  They made the bold move to stop his IV fluids and attempt all oral feeding.  We need the IV port for his antibiotic and Lasix, but we don't want to overload it and risk losing it.  The doctors also discontinued all pain medications except Tylenol or Motrin by mouth as needed for fevers or discomfort.

The plan today is to keep him on Vapotherm all day as long as he tolerates it.  They are leaving his soft collar on.  I'll try to encourage him to eat and drink.  And Ed and I will bust our behinds to try to get a smile out of him.  It's possible we will be kicked out of the intensive care unit and onto another floor tomorrow or Sunday, but we will definitely be here all weekend and possibly into next week.  

We shall see.

***

1:10pm:  Gavin has spiraled down.

As I wrote this morning, he was miserable when he woke up and didn't receive any type of pain medication before he fell asleep.  He slept until 11:30 - and woke up moaning and whimpering.  Suddenly our room became very popular.  Three doctors came in to examine him and all were in agreement that Gavin was in pain.  But why?  He shouldn't be having pain from his adenoid or tube surgery anymore.  His arm is fine from the IV infiltration yesterday.  The pneumonia may make him feel poor, but not cause pain.  They are equally confused and concerned.  They asked the ENT doctor to come down to check his ears... and they ordered a film of his belly.

In the meantime, they put him back on IV pain medication.  He just fell back to sleep in his chair next to me at 1pm.  

That plan to eat and drink and possibly head out of ICU tomorrow is no longer a possibility.

Something is wrong.

***

The mystery continues.  

Thanks for all of your suggestions of possible pain sources.  I brought up constipation and five day post op adenoidectomy pain to the doctors and they agreed that indeed it could be a possibility.  

I also wracked my brain for other ideas.  He's been wearing that soft collar since Monday and it seemed to me he was favoring looking towards the right.  Maybe he has a stiff neck, I thought.  So they took the collar off.  The good news is that his breathing was fine without the collar so he doesn't need it anymore.  And I guess also good news is that he immediately turned his head to the left - blowing my theory that he had a stiff neck and could only turn to the right.  (Is anyone else reminded of THIS EPISODE of the Brady Bunch?  I know - inappropriate during this time.  I can't help it - I'm a Brady Buff.)

I also asked if the eye surgeon could come back down to check Gavin's eye.  If, perhaps, his cornea tore again - that would be very painful.  They did a thorough check and his cornea is intact, thank God.

The belly film showed some gas and stool - but nothing outrageous.  They gave him a suppository and we're waiting for him to have a bowel movement.

In the meantime, I tried offering him a drink here and there and he was just not interested.  He's been crying, grinding his teeth constantly, sad and whimpery when he's not sleeping.

The ENT surgeons came down and checked his ears - just in case something was going on there.  They pulled out some dried blood - but everything else looked fine.  Just to play it safe, they ordered ear drops with a mild steroid for the next couple days.

The last thing they tried was testing for viral cultures.  They swabbed his nose and sent it to the lab - but it could be a while before we learn if anything grew.

So, here we are.  The good news is - he was successful on the Vapotherm via nasal canula all day (albiet a rather high setting).  He will go back on BiPAP through the night.

I'm getting a little bit stir crazy.  I have tons of down time when Gavin is sleeping - I sit in front of my computer and obsess over news stories and Facebook updates.  If I can't leave the room - at least I can get out of my head and distract myself from the reality of this.  I get so bored at times that I refresh my email and facebook a hundred times a minute - anything yet?  How about now?  Maybe now?  But then that is tempered by the hours I spend laying in bed with a whimpering Gavin as he clings to me and I sing songs to him over and over and over.  When I stop to think about Brian at home, I worry about him missing me.  But when I weigh the two sides - I'm where I'm supposed to be.

I'm pretty sure Brian is doing okay, though.  Today Sara set up the "Leong Olympics."  Here are the photos for your enjoyment.  I know they cheered ME up!

The Opening Ceremonies...

Excited for the games to begin!

"Game face" ready for the Javelin... 

Badminton...

Gymnastics...

"He shoots!  He scores!!"

Participating in "the mile."  Four laps around "the square"...

I don't know.  I could be wrong - but I'm pretty sure Brian is fine.

***

10:20pm:  

There are four things you should notice about this photo.

One:  Gavin is still awake at 10:20pm.

Two:  The room to the right of him has the lights on full blast and probably will all night due to what that patient is dealing with.  The room to the left of him has a very loud family who is dealing with a lot, too.

Three: Gavin is still on Vapotherm.  He will go back on the BiPAP when he's closer to sleep. 

Four:  Gavin is not crying, pouting or wincing thanks to medication to relieve his mystery pain.

It has been a long night.  Gavin is just miserable, but seems to be calming down as you can see in the photo.  The suppository he was given did work and it didn't seem to bother him when it did, thank God.  From past experience, it could have been a traumatic experience due to his already low tone and the pain medication.  

Hopefully tomorrow will bring answers - a miraculous recovery - or both.