Wednesday, October 17, 2012

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




4 comments:

  1. The Leong Family is always in my Prayers!

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  2. A tip for the fibro diagnosis- don't be one of "them". I'm referring to the people who complain about it nonstop to anybody who will listen. They are also common sights in the ER wanting pain meds. If you go to the ER for anything, don't make the fibro into anything. Say you have it, what you take, and that's it. You'll probably get the evil eye since about 99% of the time, people claiming to have it are really just addicts. They don't take meds they should take, they just want narcotics (because they have "fibro" not fibro. The difference is whether you have it or are just an addict). And the are a pain in the rear (we really need a way to disable their call light).

    I don't expect you'll be anything close to what these people are. Take what your rheumatologist prescribes and you'll be ok. If it makes you feel better, I doubt youre on actual pain meds. It probably is something that helps with pain caused by fibro. Several commonly used meds are also used to treat seizures. They reduce nerve activity, which prevents seizures, or in your case pain. For example, I take gabapentin for epilepsy, though I have met a few who take it for fibro. A really common one for fibro is lyrica, which is occasionally used for seizures, though not frequently. But remember, you'll be ok. You'll have good days when you feel like youre on top of the world. And you'll have bad days where you don't even want to get out of bed. But, its ok. You have two little boys and a wonderful husband who love you and nothing will change their love. I'm praying for you all everyday.

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  3. Darcy are you sure you don't have adrenal fatigue? I felt the same exact way you do and with your history....all you have been through....it would surprise me if you didn't have it! Once I got that and my thryoid under control, all the fibro stuff went away. Prayers to you and Mr. Gavin.

    Cindy

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  4. This post is like my diary when it comes to how you described your arthritis and exhaustion... especially from a mothers point of view. I feel the same anxiety u do about wanting to do more and feeling like ur stuck in a body that won't move. I'm actually wearing a ball cap today. . For the 2nd day in a roow.. lol. I have arthritis from an auto immune disease. . Hashimotos

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