Doing the Two Step - In Reverse...

One step forward, two steps back.  Approximately 6-7 hours out and about last week and I get pneumonia.  I don't even have a good spin on this.  Really?  I think they should just shoot me now and mount me on the wall.  They can hang a Christmas ornament on my head once a year and call it good. For good measure, they can hang lights around my neck for birthdays.  I prefer the large silver hoop earrings and no pink lipstick no matter what the taxidermist says.

Telling the Truth & Red Purses

I promised myself when I started this blog that I would tell the truth.  A recent e-mail from a friend underscored the need and made me ooze out of my hole today to do this.  I really don't want to, but in the interest of making sure no one thinks I'm better than I am, I find it necessary.  I think its important to know two things...hang on.

OK--I'm back.  And since I coincidentally have to tell the truth in this entry especially, I went to throw up.  Then I had to change my clothes because while I was brushing my teeth, I noticed that I had missed a little and some went down the front of my t-shirt.  I had to debate on that one--do I want to try and pull that thing off over my head and hurt or just sponge it off and pretend its not there.  Frankly, I would have done the latter, but my husband is home and after all, it is a Holiday.  I'm sure he'll thank his ever-so-attractive wife later.

So let's start there.  Attractiveness.  I'm not.  At all.  And any illusions I once had--gone.  Your family and friends will tell you how beautiful you are and that the mirror isn't accurate.  True story--my husband tells me this all the time.  God bless this man.  Anyway, you know that's not true because you can see for  yourself and because people who don't know you well, or at all, tell you.  Really--in the grocery check-out, at church, at the school.  Once at the check out, I was making what I thought was a great imitation of a person who was "normal" and smiling and joking with the employee.  When we were leaving, she said "I sure hope you feel better soon!"  What?  This how you know.  While its not a big deal that I don't look like Isabella Rosselini (look her up--drop dead gorgeous), it kinda is a big deal to me that I don't have anything left.  I still look like I have two black eyes.  My face is still puffy and blotchy.  I still have to wear long sleeves everywhere I go because I have bruises on my arms and legs.  And I still clean out blobs of hair from the shower drain.  I shouldn't complain because I'm not bald yet and I have a friend fighting cancer who is.  But see--I'm still human and still selfish.  This morning I tried to make my hair look ok, but I just can't spread the hair over the bald spots on the right anymore.  And the gray streaks are making it even worse.  But who has money for a hair cut and color when you're dumping every spare dime into meds, doctors, and vitamins and supplements?  If I had the money, I'd be buying myself an iPad first.  I'm not complaining about the money--but its a universal truth that those with chronic medical care are broke.  Even if you have health insurance (which I don't because no one will touch me), there are so very many untold costs associated with chronic illness, and the costs aren't just financial.  They're emotional, spiritual, family, financial, social...no sense in making lists under each category.

The next truth is that I am an emotional roller coaster and while I wrote about that earlier, I can't seem to get off right now.  Last week I just felt so up.  I was so emotionally positive.  I felt like I was finally taking control and then one morning, I woke up and my brain was back on.  It was GREAT!  Unfortunately, along with that, my dormant snark gene came to life, too and I think that perhaps my family is wishing it would turn itself off.  For example--I live "tweeted" the end of the year awards ceremony for my son's class--just in case someone I know reads this, I will refrain from sharing.  It was one of three things I did last week.  I also sent text messages to a friend I knew was out of town.  Here are the texts--her responses are in parentheses.

I'm in your house--STALKING!

(Hilarious!)

Yeah, where's the chocolate and bubble bath?

(You lovin' my tub?!!)

I would be, but I dropped this big thing with an apple on it in there and now it looks like a jacuzzi but I haven't turned on the power yet.

(R U messing with me?)

Give me a sec...I can't find your robe.

Does your refrigerator usually smoke?

(I'm with [husband] and he said No!)

Oh.  No worries.  We found the fire extinguisher.

(Tell me if your messing with me 'cause I'm totally crying and stressing out.)

No you aren't!  You're messing with me!  Where's the best place for the keg?  The neighbors want to know.

Oh wait.  Not neighbors.  Followed us here from the dumpster behind HEB.  My bad!!

We got your back.  We moved the house number to the neighbors until you have time to file a home owners insurance claim. (The house is for sale.)

Its all good!  Thanks for the hospitality!

Really?  Was this helpful to her?  I decided I didn't have much more to do than to mess with people's minds.  This is not pretty.  I was more snarky about a few other things, but they're PG-13, so I can't really share that.



On Friday I couldn't get out of bed.  Saturday was worse.  By then my lungs were involved and I had a cough plus they felt like they were on fire.  Lungs are nothing to mess with when your life revolves around MCTD.  The end result of my day was being alone in my room, screaming at the doctor and using a swear word combo I have never used before to describe her IQ.  I'd admit to the word, but I think my kids might read this.

Depression sets in, then.  Like it never left.

Yesterday, there was my beautiful sister's blog showing pictures of her with her son at graduation, with him being ordained an Elder (a position in our church) and her grandkids next to her.  I cried.  I wondered if her kids knew how special that was?  Did they all appreciate the time together, the blessings they receive by the gift they have of a mother like her?  I'm sure they do because they are already like that.  And part of me, truth be told, is just plain jealous.

So there you have it.  I'm no saint.  I'm not even good most of the time.  I think I'm supposed to learn that  from this and I am not doing a smash up job.  So yesterday I was determined to go to at least part of church so I could take the Sacrament.  I slimed out of bed and stood there looking at myself in the mirror.  Remember the beginning of my blog?  How much courage did I have today?  I turned around and in my closet was hanging my old red purse.  I wear and accessorize with black, navy, olive green, white.  Boring, boring, boring.  But I love that purse because it's loud and bright and it makes me smile.  So I dumped my stuff out of the old brown one and went dressed in black, with my red purse.  I still had a few people tell me how terrible I looked.  And I came home early.  But I set my red purse on the red table in the entry where I can see it.

Mushy Music and Stuff

I should be writing a blog entry about this weekend that is one of those truth entries.  The ones with the nitty gritty, stuff no one wants to hear about.  But I'm not ready to go there today.  Maybe tomorrow.  In the meantime, this weekend I came across some really great music.  Music is where I go when my head can't take anymore and I feel like I'm going to lose it or just give up.  One of my particular favorite types is rock music done with classical instruments.  For example William Joseph rocking out on the piano to Led Zeppelin's Kashmir.  I discovered a violin player I love--David Garrett.  Check him out on Youtube and search for Smooth Criminal (Michael Jackson) and Thunderstruck (ACDC).  And then there's this song from Rascall Flatts.  Normally, I would have already had this one because I am a big fan, but for some reason the latest album slid in under the radar and I missed it.  When I heard this song, I had to go and get it for myself.  It makes me think of the really wonderful man who has taken all of this on, and continues to do so.  He's not terribly sentimental (OK--not at all), but I know he loves me.   He's the one who won't let go in my life--even when I feel like letting go myself.

Rascal Flatts

Living on the Roller Coaster

When it comes to raising kids with special needs, I might know a few things about it.  It's possible I might even have a few things worth sharing.  But if there's one lesson I've learned well--get off the roller coaster, smile and wave at them from the platform, and let them ride alone!  Today, I realized I'm riding the health roller coaster and I'm pretty much putting it out there--I stink at it getting off it.  Not even kinda'.  I truly, truly stink at it.

Today was a good day.  I got up before 9 am, showered (ok--it was a REALLY good day!), took my schload of vitamins, drank my sludge and was ready to go.  I actually drove into town, enjoyed a wonderful morning with a friend, and then came back home, picked up my kids from school, picked up more veggies for sludge, and then arrived home around 4:30.  This was truly one of my biggest days in many, many moons.  I was tired when I got home, so laid down on the couch.  And couldn't get up.  Period.  No gas for any reason.  The house could have burned down and I would have hoped someone could drop me a glass of water to sip from.  Not to worry!  My brain was still happy!

I was on top of the world--so excited, feeling like I was going to beat this thing.  Enter reality.  A few short moments later.  My brain turned off, too.  As in couldn't remember, couldn't put two words together, couldn't think what I needed to do next.  All I could obsess over was "when do I get to sleep?" I thought I had rounded the corner on that one.

Then I read a horrible headline that came across my news feed.  An 8 year old girl who committed suicide.  She hung herself on a barb wire fence.  I couldn't deal with it.  I wondered how she even knew how to do that.  I wonder what things she saw at home or was exposed to there.  I hated myself for thinking about that way when its more probable that her parents were devastated and in agony.  I wondered what would make an 8 year old want to do that?  I have a short memory.  I already know because my child went through that.  Suddenly, my exhaustion and the length of my day overwhelmed me and I couldn't see the sun anymore.  I started to cry.  Not just for her, but for her mother, my child, myself, all the hurt children in this world.

I received a text from my sister.  "Don't dwell on the negative, stay positive!"  And there I was, seeing myself on the roller coaster again.  Its a constant struggle for me:  staying focused on the positive so that the negative doesn't mess with my mind.  I'm not back yet tonight.  I'm still down there trying to climb out.  Even writing hasn't fixed this.  What I really want to do is cry and cry and cry.  

Why Isn't this Fixed Already? And the Better Question--Why is This Funny?

It's been an entire week on the "new" regimen of vitamins and supplements.  So far, this isn't fixed.  Shouldn't it be?  I have done everything I was supposed to and this week am going to step it up a notch by actually moving around more than just from the bed to the couch and back to the bed.  Next week I should be ready to start some serious training.  Not only am I not completely healed, but my feet and hands look like they have retained half the missing water in the Guadalupe River.  I find this highly annoying.  Friday I spent a great afternoon and evening with my sister doing a whole lot of nothing too important.  It was great.  I think I woke up from my nap following these activites Friday on Sunday afternoon.  This too, is annoying.

A very wise woman I met said that "hindsight is easier because during the trial, all we tend to feel is the trauma." (Kris Belcher)  She was right.  Since I first heard that over a month ago, I have been trying to find the humor where I can. This morning I decided in light of another night of zero hours of sleep, that instead of thinking about how discouraged I am, I would try to find the humor in my situation, then start making a list.  I plan on consulting this list frequently.  I am also guessing that this list is going to take some doing.  So far, I have two things on the list.

1.  Hair.  I am losing my hair--by the handfuls.  It is distressing to me, and I'm sure much more noticeable to me than to others.  However, I am comforted by the fact that those on the areas of my body in which I do NOT want hair (ok--really, who are we kidding here?  The chin.) are intact with all of it hanging in there tough.  It takes a chain saw to saw that stuff out.  I am fortunate, however, that I do not suffer from the same thing that men do as they age--each hair that disappears from the top sprouts out the nose or ears.  This also brings up that whole scriptural passage "not even a hair on your head will be lost."  Really?  In light of plucking, shaving, laser removal, waxing, etc. I'm not completely convinced that this promise was particularly well thought out.

2.  Somewhere in this weekend I did manage to slime out to the store for birthday fixings for my son's 12th birthday and for some organic veggies to juice with.  Which brings me to the second thing I find funny:  juicing--just the whole concept.  To do this, you need a juicer.  These things are the size of small engines and just as shiny.  It sounds like an airplane taking off in a hangar.  You also need veggies.  The concept is this:  if you can't figure out a way to make it palatable, you juice it.  This means that any veggie that no one would ever willingly eat is endowed with supersonic qualities and when juiced is going to make me feel healthier than I've ever felt before.  I smell a small, yet powerful Washington Inedible Vegetable Lobbying group at work here, but whatever.  So the required vegetables are things like spinach (actually don't completely hate that one at least in its solid form) and anything else green:  parsley, kale, collard greens, mustard greens, beet greens--just greens in general.  If this is too bitter, then you can add carrots for sweet.  Really?  Last I checked sweet involved  cocoa beans, six cups of fat and three gallons of pure cane sugar.  Proponents of juicing will tell you that if you add just a "little bit" of fruit, you can't taste the vegetables.  That would be what we call quantum leap logic.  OK--so procedurally, you just mash all this goodness up into a ball, send it down the chute and gag down what comes out the bottom.  It speaks somewhat to the issue at hand that I'm not only willing to do this, but spent money getting stuff to do it with.  Historically speaking, had the Children of Israel had to drink this sludge rather than eat bitter herbs at Passover, they'd still be in Egypt.  Just saying.

Hold on, the Light will Come

Music has always soothed my soul.  It brings me answers, it brings me peace, and it brings me joy.  This morning my Heavenly Father answered my prayers of last night via a simple song.  What follows is the link to the song and the story. For all of us who are waiting for the light in the darkest periods of our lives.

Meridian Magazine - Hold on, the Light will Come

(MP3 to the song is at the end of the article.

The "2 am's"

I have always felt that the 2 am's are the worst.  Nothing prepares you for them.  It doesn't matter whether you are up because you child is making your crazy or because you can't sleep or because this dumb-ass (repenting now!) disease won't let you sleep.  I struggled this morning, had a decent afternoon and evening, and am now sitting in bed typing here because this is part of it, too.  The nights are endless and discouraging.  Everyone around me is sleeping, including my faithful Dakota--my Newfie who takes care of me.  It occurs to me to reach over and smack my husband who sleeps soundly no matter what, but I do refrain.  I have some self control.  Some--not a lot.

When it was "just" insomnia, I watched infomercials.  That stuff looked necessary after awhile!  Then I worried about kids:  was I doing everything I could for them?  Was I the Mom that could help heal them?  Later it was kids again:  my heart breaking in two because theirs were already broken.  I think that's when I learned that a broken heart actually feels broken.  I couldn't breathe.

But now, MCTD has stolen my sleep.  And at 1 am, I find my sense of humor is waning, my pain is growing, and my stamina is taking a breather.  I am extremely dizzy, so I have to wake my husband to go into the bathroom and I'm really glad I didn't smack him.  I'm not sure if others get them, but my mouth is full of sores.  Sometimes I will have them all down my throat, but tonight I am grateful its only about a dozen.  I brush my teeth again and use mouthwash hoping that if I do that enough, the sores will burn up and go away.  I'm not sure if there's any logic in that, but I have nothing else I can do.

I'm also stressing because my daughter, who is in her first couple of months of college far away in Idaho, found out about how sick I am.  Her friend came home for the weekend and saw me at church.  She told her she was shocked at my appearance.  OK, really it isn't that bad, is it?  I don't want anyone to answer that, actually.  My daughter called frustrated because she didn't have a part-time job so she could get a plane ticket and come home.  I told her I looked lousy, but that might just be completely unrelated to the disease and to stop worrying.  The truth is tonight I'm worried about her, but I'm torn, too.  Torn between the worry and the fact that this beautiful daughter cares that much about her Mom.  If others knew her story (and it is hers alone to tell), they would know what a miracle that is.  It melts my heart.

I'm near tears.  I have no reason why except I'm tired, worn out, and want desperately to sleep.  I saw a tweet from a fellow patient who said she was going to go on the lupus walk fundraiser.  I grabbed this computer and thought "I'll go too, it will be my goal!"  Then I realized that I couldn't make right now.  I read the fine print on the web page.  There is no cure.  There is no treatment.  There has been no advances in 51 years in the treatment and medication of lupus.  So now I'm crying.  What if I'm wrong?  What if this is as good as its going to get?  Who will I talk to at this time of night to soothe my soul?

And now I'm ashamed.  Because I know who I talk to.  He who knows my pain, who atoned for my sins and who can heal me.  If it is His will.   So, I'm closing this entry tonight to talk to Him.  I'm not going to ask for this to be taken from me because I don't want to miss the lessons I'm supposed to learn.  But I am going to ask for strength while I learn those lessons and the faith to know that He is directing my life--and then to thank Him for the opportunity I have to grow in this life.  He will heal me when it is time, in His way.  In the meantime, I'm going to ask Him to have just a little more patience while I figure out how to truly submit my life to Him.  Since He is perfect, I'm guessing his patience is, too.