Thursday, May 26, 2011

encouraged

My little girl randomly came up to me today and said, "I want to pray to God right now...." and she indicated she wanted me to help.  I said, "You know how -- just talk to Him."

So she turned around, bowed her little head and clasped her hands together and started,
"Dear God, please help mommy feel better......" then she looked up at me with one eye open and asked, "Wait, Mom?  Are you still sick?" 

Oh how that encouraged me!  I have been feeling slightly better this week -- on my feet more, joking around more with the kids, showing them a cheery face most of the time, and doing more around the house.  We've even taken a short walk each day.  I loved hearing her ask that for the first time since I got really sick.  I told her that I am STILL sick but that I'm feeling a little better!  So she should thank God for that.  And she did.  Then she went on to pray that she was thankful for our "beautiful house", that God would help the "people of Japan and Issouri", and "that Olivia will start walking.  Amen".  To which I replied, "Um, Georgie -- Liv is running.  Don't need to pray for that one anymore." :)

I'm off meds this week and next and I've been trying to pace myself since at the end of next, we'll have an appointment with the LLMD.  I just hope this upswing helps and that the doctor's visit goes well and that I stay encouraged.

So thankful for my sweet daughter and her compassionate heart!

Tuesday, May 24, 2011

stripped?

It is awfully nice when someone says you look "great" because they know you are sick and they think that since you look "great" it means you must feel a lot better.  It's fun to see their enthusiasm that you're getting better even though they don't know you don't feel like you've made progress.  Most times I just enjoy that instead of getting all uppity about it and how I should say I don't FEEL great, but thank you.  I just nod and say thanks.  Because, really, isn't it nice to be told you look great?

I believe it's makeup.  And a pretty dress for church.  You strip all that away and, well...you don't look all that "great" anymore.
Makeup covers a lot of flaws (as does a good lens on a camera)-

 Foundation, eye makeup, blush, lip gloss----

 But then take away the eye makeup and lip gloss and you start looking the part of a sicky again...slightly...

 But take away the foundation and you get to see the hives that have been plaguing me this week and the acne that has sprouted up because of the stress on my body, and then the pop of pink you were wearing in the dress is gone making you look paler, and then when you take the smile off because it takes energy, well - you start to look not as "great".

I have shown up to church that way before and I can tell you, no one said I looked "great".  Instead I got hugs and sympathy and prayers.  Because I DID look ill.

I'm not having a pity party at all and these picture don't do justice to my skin flaws, but you get the idea.  Just because a chronically ill person looks great, doesn't mean she feels great.  But I think we'd all agree, it doesn't mean we don't want you to tell us we're looking good.  I think we just also want to know that you know it's a long road and showing up one day looking good doesn't mean we're healed.

My husband will always think I'm beautiful -- hives and all.  He never complains, but he does tell me I look "really good today" when I put on a dress and some makeup.  I like that.  Even if I don't feel good.  I know when he says it, he's not saying, "You're better!" He's seen all the ins and outs of the disease and what I go through daily. He's saying what every partner in life should say every now and then -- "You're pretty to me! And you've still got it goin' on!"  :)

Tuesday, May 17, 2011

headachey

This "paint medicine" as my daughter calls it (it's actually called Mepron), gives me the worst headache when I'm on it.  So being that this is my second week of I don't know HOW many cycles of the meds, I'm headache-y.  It comes on about 2:30pm and just gets worse and worse until bed.  Quite sad.

My little girl came up to me this afternoon as I lay on the couch trying to avoid noises and moving and such and she said in her sweet little voice, "Do you want me to scratch your back?"  To her, this is the UTMOST comfort.  Sweet little one.  To be fair, after she gave me a "scratch back", she asked me to give her one :)  And I obliged.

Lately I've just tried to do MORE for the kids.  As much as I can without making myself pay for it the next day.  This means little things.  Like "looking" when she says, "Look, Mom!" and does something silly or something to "show off".  Or taking the time as I pass my little tyke to give her brief tickles so she smiles and fake giggles.  She's still Daddy's little girl, but she still enjoys when I give her 1-year-old silliness.

This picture has been on my mind lately.  When I saw it recently the caption came to mind - "Before the Fall".  This was RIGHT after I had been diagnosed with Lyme.  I was fresh off a pregnancy and wasn't feeling as terrible as I had in the past and we actually had some sort of "hope" that maybe we caught "it" (Lyme) at a point where it wouldn't be a huge fall to be treated.

 It was summer, and we did so much that summer all in a span of a few weeks.  We went camping, trudged through a 14 mile overnight mountain climb, spent time with family, went to a sort of college retreat (where the pic was taken---I was dancing in a skit), and went camping again.

I'd say about a week after this shot was taken I was convulsing in a parking lot somewhere in Utah.  Scariest.drive.home.EVER.  I could barely move and we had a 2 day drive to get home.  Once there, I could barely walk, would fall often, and would convulse often.  And my husband still had to work so I was home alone with the kiddos.  Those were the days where my 3 year old was told that if "mommy's eyes ever close and don't open,  you need to call Daddy." And she was taught how.  If she ever saw my eyes close a little to rest she pleaded with me not to close my eyes.  Poor thing.

But I do see how far I've come from AFTER the crash.  We see improvement.  Even though it's been rough and I'm sure will still be rough, I at least feel like I see a tiny glimmer of light coming from the end of the tunnel.

We're blessed to have been given so many good things and so many encouragements along the way.  It makes the times when we're so so down survivable because we know that God has our best in mind.  We know He's in control.

T-minus 17 days until we fly to DC to see my LLMD.  Hoping for good news and some more improvement before then :)

OH and btw - if you haven't heard yet, Netflix is offering Under Our Skin to watch instantly.  This is a great documentary about Lyme, the controversy about the disease, and also just what we Lymies and families of Lymies go through.  So watch it if you haven't yet!

Monday, May 9, 2011

peaceful ~Mother's Day for the Chronically Ill pt. 2~

I had the blessing of feeling pretty good this Mother's Day!  It was my favorite Mother's Day so far.  Last year I had recently had a baby and was in newborn "fog".  The two years before that my husband was deployed so it made Mother's Day hard, especially since my little one wasn't at an age to "appreciate" me :)  The year before that, I was pregnant and my husband and I debated whether I was a "Mother" yet :)

So anyway, it was a lovely day with the family but there was one thing that really stuck out to me.  In church Sunday School, my 3 1/2 year old daughter made a card for me.  They were to fill in the blanks (with help) and answer some questions.

My mom's favorite color is........BLUE (this isn't entirely untrue - I like all colors but that morning she had given me bright blue nail polish and I had said I loved the color).

My mom is......10 OUNCES....years old  (This brought a smile to my face but incidentally, on the car ride home she said, "Mom? How old are you?  I just said '10 ounces' but how old are you?')

My mom's favorite food is......MAC AND CHEESE. (Well, it makes sense because since I've been on the last round of meds, I've been so nauseous that nothing sounds good to eat....EXCEPT mac 'n cheese.  So we've had it once a week lately.  I can see why she'd say that)

My mom's favorite thing to do is......REST.  (WOW.  It hurt but made so much sense why she'd say that.  I really do rest all day save for the very few and far between days that I can get up and do a bit of housework.  I asked her if she told the teacher that I was sick and she said, "No, I just told her you rest.")

My mom loves to........TALK.....with me. (Since I obviously can't do much else)

I love my mom because......SHE LOVES ME.  :)

Tuesday, May 3, 2011

tired. ~Mothers Day for the Chronically Ill~

My mother will be out of town....so out of town that I won't be able to even talk to her on Mothers day.  So my time to well wish her was last week.  I had to do it over Skype because she doesn't live near.  Problem was, my body was fighting a virus.  And when it does that on TOP of having Lyme, bad things happen.  I didn't even have energy to talk.  I whispered most of the day.  Even that took lots of energy.  So I resorted to writing what I wanted to say to her over Skype.  A sort of virtual Mothers Day card.  I felt bad it had to be that way but it turned out to be the best.  She loved it.  I put on some background "mom" music and showed her a set of 10 or so "cards" that had what I wanted to say written out on them.

Such is the life of the chronically ill.  I'm glad my family understands.