I so struggle with thinking I’m complaining by telling people what’s going on with me … but in recognition of a couple different things, I thought I’d give an update with the latest …

First of all, tonight I’ll take my first full dose of medicine … hurray for full doses!  :)

So far, the treatment hasn’t made my symptoms any better.  At times, I feel like my facial numbing is subsiding and just when I say so {like yesterday to a friend}, it comes back.  :(

Secondly, I came across this brochure in my doctor’s office and thought I’d like to share it.  Just the first few pages, but I think they say a lot.  And between the lines, I guess they say a lot about how I’m feeling inside?

Again, my plan isn’t to turn this into a multiple sclerosis blog, but it’s now a part of me and in some sense, I also feel a responsibility to raise and share awareness.  In fact, I added ‘multiple sclerosis’ as a category.  This whole thing started as an “eye update” and I’d been categorizing it that way … but I figured the time has come to put a label to it.

But … eye update seems fitting today … as I’ve just had a flare up this past weekend.  It started in the middle of the night on Saturday … lots of pain in my left eye {eye of choice}.  By Sunday, it’d gotten worse and I was losing vision.  Not significant, but noticeably enough.

I got a hold of my doctor’s office on Monday and they wanted me to come in.  I’m glad I called.  I generally don’t call.  Anyway.  It wasn’t a severe flare-up, but he wanted me to come back for a dose of IV steroids and then a script for oral for 15 days.

I went in on Tuesday afternoon.  And for some reason, walking down that hallway into the treatment room, just got me sort of emotional.  I just didn’t want to be there.  I didn’t want the steroids.

But I got them anyway.  The treatment lasted about 45 minutes.

I’m speaking at Lori’s service tonight, so came equipped to the treatment with my Bible and a notebook.  Also helped me put things into perspective.

Well … a little anyway.

I did have a hard time when the nurse gave me my handicapped parking permit.  Marked permanently disabled.  As I’ve mentioned, I have a really hard time parking.  I just can’t judge the spacing right and really stress about it.  And I’m learning, when I’m stressed {anxious, nervous or tired}, my symptoms flare up worse.

And I also had a hard time when after my treatment, I headed to the lab to have my liver levels {?} checked, as and she was drawing blood for that … I realized I need to do my injection that night.  3 pokes in one day … good times!

But I rebounded.  :)

Anyway.  One good thing, after reading the brochure above, is that it mentions talking to your health provider about “invisible” symptoms.  So when my doc came in to fill out my prescriptions, I asked about it.  He wanted to know which specifically and I told him numbness and weakness {more on that in a bit} are my major annoyances right now.  He said steroids can actually help with that!  Woo!  So I’m adding that to my prayer list …

And for how I’m doing otherwise?  As I said the treatments haven’t helped a whole lot yet.  Some facial numbing decreased.  But add to that limbs that fall asleep frequently on you … not cool!  The other developing symptom I mentioned is that my legs have started weaking.

I first noticed it the very beginning of September and was pretty subtle.  Just enough to tuck in the back of my mind and think “hmmm …”

But last Friday, it had gotten a whole lot worse.  I was headed down to Chicago for a fundraising event … a cruise off Navy Pier for JDRF, that affects my little friend Emily.

At the train station, we needed to move to the other side of the track and the stairs just about wiped out my legs.  They were shaking and not in good shape.  I can feel their weakness even when I’m sitting.  And at one point on the train, I got up to use the restroom, but was squeezed between 4 people and having a difficult time getting up and staying steady.  Then once on the boat, rocking out on the lake … between my vertigo and “sea” legs … I was in bad shape.

I was seriously thinking about a cane at that point.

They’ve gotten better.  That was definitely the low point.  But I’m still unsteady when I walk.  I can feel the weakness.  I don’t think it’s visible to others {unless I’ve taken a sleeping pill, and I’ll get to that in a minute}.  It’s just that it’s something I think about.

I don’t know if that makes sense … every step I take, I have to think about.  I can feel the unsteadiness in my legs … in every step.

Stairs are particularly hard.  And carrying children on stairs is something I won’t be able to do much longer.

About those sleeping pills?  I’ve been having trouble sleeping … not a huge deal.  Most times, I’m not up very long, just very wakeful and restless.  Anyway, when I was getting my IV, the nurse said she was ordering me sleeping meds too … hmm.  Okay.  I’m game for that.

When the doc was writing up the script, he said it’d be a low dose and I wouldn’t feel groggy in the morning.  Sounds good to me!

Well … I took one that night and finished up some emails and was going to head to bed.  Luckily, CJ had come into my office to check on me, because when I stood up, I couldn’t walk.  I’m pretty sure it was a combo of the drug and the weakness in my legs … it hit me like a ton of bricks … I was so unsteady on my feet, he pretty much had carry me to bed.  And then I slept fitfully.

So I called yesterday and they prescribed something else.  I did better on it last night, but it also makes me feel a tad unsure on my feet, so not sure I’ll be taking them regularly.

One last thing I’d like to mention … my marriage.  Communication is something we’ve always struggled with.  We just have different styles.  CJ is a business man and skims when he reads.  No fluffy stuff for him, just get to the point.

I, on the other hand {and maybe most women?} … like to tell the details, the fluff, the surrounding circumstances, a whole picture to tell the story.

Right now, I feel like we’re in a communication standstill and working hard to get past it.  As I mentioned, I know I need to talk more about what’s going on with me.  At the same time, I feel like I’m trying desperately to sort it all out and make some sense of it myself.  When I have flare-ups or my symptoms get bad … it’s so hard to explain exactly what I’m feeling.  And when you’re married to a facts man … it’s hard to come to one common place in your understanding.

We’ve found a counselor that we seem to like.  I think she’s helping.  She’s sort of no-nonsense and to the point.  We both like that.  I am a fan of getting help wherever we can get it.

Why am I sharing all this with you?  I’m not so sure.  Verbal throw-up? ;)

I’m going through a lot.  Feeling a lot.  Sorting through a lot.  And you, my dear friends … get to come along in that journey with me!

I believe in not just venting to vent, I usually like to depart with some sort of wisdom or inspiration.  I wasn’t sure what that would be with post.  In some ways, I thought just the raw honesty I’m feeling and sharing would be enough.  And then I just got this note from my mom … “word for the day” … perfect for what we’ll be facing tonight and a perfect way to end this post.  Thank you mom …

Refuse to allow the enemy to steal your hope by blanketing you with discouragement. Breakthrough is imminent, but you must take your stand on My promises and be unwavering in your faith. I am your very present help in times of trouble, and I am with you to lead, guide and direct your steps. Trust Me to move you in the flow of My Spirit, says the Lord. Do not be afraid.

God is our refuge and strength, a very present help in trouble. {Psalms 46:1}

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A few people have been asking how I’m doing and if the treatment is working … clearing my symptoms.

It’s not.  Not yet.  I still have hope though …

My vision has been getting worse.  Blurry at times, but my reading vision is mostly being affected.  I had a follow up with an optometrist and I just purchased me a brand new set of bifocals!  Seriously?

Anyway.

Some people have mentioned my peripheral vision or think that’s what’s bothering me.  It’s not.  The best way to explain it, is sort of this hole {super, teeny, tiny small}, but holes in my vision that are missing.  Right smack in the middle of my vision … view.

The optic nerves are dead.  They’ll never come back.  I’ll never see again using those nerves.

The bifocals will help my reading vision and they’ll also help with some of the surrounding vision that I’ve gradually lost from aging {had lasik 9ish years ago … before that blind as a bat} … but they won’t help recover the ‘holes’ missing in my vision.

Just for fun, I thought I’d share a photo of what my vision looks like … fun, huh? ;)

The multi-colored is the damaged {left} eye.  The solid is my normal {right} eye.

The little graph under each eye show where normal should be.  The red line is my left eye and failing miserably.  The blue line is my right eye and within normal.  Yay for normal right eyes!

Anyway.  Now you know … when I’m looking at you … this is how I’m seeing you.

And when you look at me, by all standards, I appear normal.  But what’s going on inside of me is far from normal.

I’m numb.  All over.  My limbs have started going numb and falling asleep.  And it sucks.  I wake up in the middle of the night numb.  I wake up in the morning numb.  My arms, legs.  Face.  Lips.  Head.  Nasal passages.  Private parts {yeah, I said it}.  It sucks.

I also walk around in a daze.  Like the room is slowly, slowly spinning and I’m going to fall over.  When I’m sitting at my computer, I’m sort of spinning.  My head is.  And it sucks.

I can’t think as quickly as I used to.  I can’t make decisions like I used to.  And it sucks.

I have a harder time in the car … when there’s a lot of commotion {you know … kids, music, talking, life}.  I can’t pull straight into a parking spot to save my life.  And backing up takes me all day.  It sucks.  And I’m scared.

But I don’t tell anyone.  I suppose I should.  I’m just not sure how.  How do you tell someone you’re miserable … almost 24/7 … feeling miserable.

Anyway.

The side effects of the treatment are starting to get a little stronger.  I’m getting hot flashes like crazy … and if I’m not sweating, I’m freezing.  I’m getting achy … just yucky.  I won’t bore you with details.

I’m only up to half my full dose of meds right now.  I’ve taken 4ish injections at half the full dose.  I was tolerating .25 really well … even called my doc to see if I could go up to the full dose faster.  Anything to try to get rid of these other symptoms.

He said no.  The likely side effects {flu-like symptoms} are too prevalent.

I think he was right.  Guess that’s why he has the degree.

I still don’t like giving myself the shots.  The higher dose is making the injection sites tender.  The other day I was doing my butt shot and accidentally released the needle before I was ready … I jumped {but managed to keep the needle inside me}, but anyway, I was sore for a few days.

And since this is a super fun post with my eye images and all … I thought I would share my injection site diagram!  Good times on this blog! :)

So I have a total of 24 injection sites.  There are 8 areas, with a upper, middle, and lower site at each area.  I need to rotate sites each time I give myself the injection, so as to reduce risk of infection, etc.

I’ve given myself all my own injections.  Even the butt shots.  CJ and fam have kind of forgotten that I have to do this … so don’t really ask … and I suppose it’s better that way.

I’m still struggling with it all.  Just in the sense that it’s kind of private or something?  I’m not sure.

I’m really doing fine with the diagnosis and the disease and the knowledge of taking the injections for prevention, etc.

But I think I’m struggling with being sick.  And admitting that I’m sick.  Does that make any sense at all, or am I rambling?

I guess as I was thinking about this post … my thoughts turn to the fact that I look fine from the outside.  I look healthy.  But as you can see from my beautiful graphs and descriptive symptoms … I’m not fine.  I’m not healthy.  In fact, I’m hurting … badly.

And it brought me around to thinking how many of us are hurting.  Hiding.  And hurting.

How many of us have things going on, deep inside … but look ‘healthy’ to those around us.  We look fine, so people assume nothing’s wrong.

I was driving Taylor to school Tuesday morning.  I pulled into the school, dropped her off and made my way out of the parking lot.  There was a van in front of me, going really slow and then finally stopped in front of me.  She got out and started walking to my window.  I rolled it down and was ready to tell her I was new to the school and pretty sure I wouldn’t have whatever information she was going to ask of me.

To my complete surprise … she started yelling at me.  Y e l l i n g!!

I was shocked.  My jaw was literally hanging open.

I’ll save you the details … but apparently, I cut her newly licensed son off as I was pulling into the school.  She made it sound like I did it on purpose.  I didn’t.  In fact, I wasn’t even aware of it.

I said I was sorry.

And I cried.  A lot.  After she walked away of course.

I immediately thought of my disease and how it’s affecting me.  I’m scared.  Quite honestly, I’m really afraid.

And I thought … don’t you know what I’m going through?

Then I thought … there was no reason she needed to yell at me like she did.  If she wanted to make me aware of cutting them off and to be more careful next time … she really didn’t need to do it the way she did.

My conclusion was that she is the one who’s hurting.  And I prayed for her.  Of course, that was after I stopped crying, got over my bitterness, had time to think about it and realize I really wasn’t the one at fault.

Anyway.

We are all hurting.  Each and every one of us.  In one way or another.  We are hurting.  Some big hurts, some small hurts … but all hurts, and all important none-the-less.

So yes, I’m still struggling … I’m still hurting … I’m still learning.  My hope is that we can all learn from each other.

I need to open up more.  I think we all need to open up more.  We need to lean on each other.  We need to ask for help.  We need to ask for prayer.  From each other.

I just found this great verse that I think I’ve fallen in love with!!

“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.  Romans 5:3-5

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Alternate titles:

• what the heck!
• help please
• needles hurt
• give me a break!
• i don’t like shots
• my crazy life
• stop the world, i wanna get off!  {my personal fav!}

I was in full on mother-of-the-year mode the other day.  Complete with a crazy threat of leaving the baby in the car while we went into a store.  Really?

But come on … haven’t you been there?  Pretty please say you have!

There are all kinds of activities and crafts I’ve been wanting to do with the kids this summer, but for some reason … life {?} keeps gettin’ in the way!  So I had a day planned where we were going to do some fun things on my list and maybe get some school supply shopping done.

Plans went awry when it looked like Hunter had a suspicious case of chicken pox.  So we started the day with a trip to the doctor’s office.  No chicken pox, whew!

Then we went school supply shopping.  I think I must’ve started the day on a short fuse.  Had to of.  There’s no other way to explain that I could’ve gotten cranky with:

• The frowning, rude lady behind the concession counter at Target, who pretended not to see us standing there.  Then looked at me like I’d just asked her for her firstborn, when I was only asking for a couple of smaller cups to split a bag of popcorn between the obvious children flocked around me.
• The other crabby Target lady who yelled at me to get my kids down from climbing the counters in the concession area.  I looked at her patiently and replied, “They aren’t mine.”  Seriously.  How many did she think I had … that would’ve given me six.  Hmmm.  Sad thing is, I almost did ask them to get down.  Funny how we can feel intimidated so easily by others.
• My very crabby three year old.
• My slow moving fourteen year old.
• My cart spinning five year old.  And I should mention, we grabbed the Cadillac of carts, so the thing was a mile long and she was dangerously close to knocking out the entire school supply area!
• The very cranky man in the parking lot who came around the corner out of no where.  I stopped, so he could pass {remember, I was trying to maneuver four cranky kids and a mile long cart}.  Then looked at me and said dryly, “Excuse us.”  Really sir?  Didn’t he know I was already on the verge of tears?

Then … I noticed in the morning that I had a lunch date planned with a friend.  Totally forgot it was on the calendar, so sent her an email asking if we could reschedule.  It was getting later in the morning and I hadn’t heard from her, so left her a voice mail.  Get a text well after our meeting time that she just got my voice mail.  She’d been at lunch and I was a no-show.  I suck.

Then it was shoe shopping and meeting daddy for lunch.

I should admit, in the midst of this … I just plain wasn’t feeling well.  It’s so hard to explain … it’s sort of this fog that I’m living in.  Sometimes things seem like slow motion.  I can’t process more than one thing at at time.  So when all the kids are whining talking to me at the same time, while I’m trying to figure out what shoe fits or doesn’t, or what’s on their supply list or not, or where we should go to lunch and to call dad, etc. … my mind is yelling, “STOP WORLD, I WANT TO GET OFF!”

On top of that … part of my face is numb and tingling and annoying!  Blagh!

But at least I can admit I’m cranky right?  I told CJ I wasn’t doing well, so when we got home I laid down.

I was feeling better when I got up and ready to continue on with the day.

Shortly after, CJ needed to leave for a meeting … so I was at it alone with the kids.  No biggie, I do it all the time.  Only that was before I turned into a newbie injector!

A little later, as I was working on dinner … Hunter fell asleep.  At first she fell asleep sitting straight up watching TV.  I kept trying to wake her.  Her eyes kept rolling and closing.  She was down for the count.  So what did I do?  Yeah, pulled out my camera!  :)  Isn’t she precious though?

She hasn’t napped since the nukie party.  Before the nukie party … she was a napping queen.  This no-nap thing is really taking a toll on me her.

Anyway.  Dinner was ready and I wasn’t feeling well, so didn’t eat dinner with them … I also had to give myself my shot before we left for church.  And miss teenager was up in her room getting ready.  I knew it was a risk leaving the three ‘little’ ones to fend for themselves, but honestly, I didn’t have a choice.  Oh! and by this time, I was able to get the baby awake and sitting at the table to eat.

So I’m in my bathroom preparing my injection, when there are kids calling me asking for this, or that.  I tried to explain that “I was giving myself my medicine and I’d be there in a few minutes.”  Nope!  They wanted me and wanted me now.

It was crazy.  Seriously, I thought … give me a break!  Can a mom just give herself a little injection here?  Reminded me of how many times I’ve had convos with other moms about not being able to ahem, do a #2 alone getting any privacy in the bathroom.

I was finally able to give myself the injection.  Ouch … I don’t like needles … I don’t want to do this anymore … I don’t want to be brave … I don’t want to be sick … needles hurt … shots suck!

And then I packed up all my paraphenlia and went out to the kitchen to face the madness tend to the children.

And then to church to pray, and be filled, and gain strength, and feel peace.  Tomorrow’s a new day …

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Hmm … what to say?  I want to update you all on how I’m doing.  But at the same time, be careful not to turn this into an ad for MS.  ;)

I guess it’s my blog … my journal … of my life … and now my life includes MS.  So I suppose it’s only natural we’ll be discussing MS from time to time, right?  And you’re all okay with that, right?

After a bit of phone tag, some tears & begging {me, not the nurse}, I finally got my nurse visit last Thursday.  She couldn’t have been sweeter to fit me into her schedule.  CJ was headed out of town the next day, and I really wanted him there for the training.

She comes in and we all sit down.  It’s times like that, that I realize how crazy my life is.  Four barking dogs, kids running amuck.  Taylor was trying to make herself lunch … I’m watching her burn her hands in the steam of what she’s making … I have to ask the nurse to wait a minute so I can explain to Tay what she’s doing.  And just as I’m ready to give myself my first injection, Wynt comes over, flops down and says, “whattcha doing?”

Sigh.  I think one of the harder times in this process was when we explained to the kids that I was ’sick.’  We were up north and I was trying to get ahold of the nurse line.  They finally called back, so I left dinner for 20 minutes to talk.  When I came back, Wynter asked if I was sick.  Curt and I hadn’t really discussed what we would tell them, so I sort of looked at him for an answer.  He said no.  Wynt asked why I had a nurse then.  I looked at CJ and said we really should tell them.  So we did.

Told them about the name of the disease and that I would need to give myself shots.  “For the rest of your life?” Wynter asked.  CJ said no.  I said yes.  “For the rest of my life.”  I had just talked to the nurse and asked her that very question.  For as long as I want to try to hold off further progression of the disease.

It was in that moment, “for the rest of my life,” that everything started sinking in.  And just to assure … we were very positive in what we told the kids and they were good with it.

Back to training … it was hard giving myself that first injection.  But I did it.  No one knew, but I was fighting tears.  Actually, I think the nurse knew … and she encouraged me.  Told me what a great job I was doing.  I kind of have to chuckle … really?  Doing a great job giving myself a shot?  :)

So … here’s my paraphernalia.  For some reason, it’s the sharps container that gets me everytime!  Who would’ve ever thought I’d have the need for a sharps container in my home?  Or shopping their website {I’ll spare you the link} for a compact travel solution.

Until I get use to things, I have this cheat-sheet mat to use.  You lay everything out on the mat and walk through the process.  Right now, it takes me about 15-20 minutes … but once I get the hang of things, should take me a little over 5.

There’s a whole, little process involved.  Attaching, mixing, shaking, sterilizing … then I get the auto-injector thingy ready.  It’s really a clever little machine!  I don’t see the needle at all until after I take it out {of me!}.  The hardest part for me, is pulling the trigger.  Yeah, there’s a literal sort of trigger … with a loud snap … that releases the needle.  I leave it in for 15 seconds {count it out … one onethousand, two onethousand … it’s a long time!} to get every drop of medicine out.

Right now I’m on a titration dose … meaning I’m slowly moving up to my full dose.  That’ll help reduce side effects, and so far, I think it has.  I’ve felt a little … but I don’t think nearly as bad as if I was the full dose.  At 7 weeks, I’ll be up to my full dose.

I’ve had two injections so far, and tonight will be my third.  Saturday, with CJ gone … I was at it alone … and it went fine.  I did it!  I’m doing it!  Yay me!!  ;)

Alrighty then … some good news … look at the cute bin I found at IKEA to store all my stuff!!  Cute, huh?

Lastly, my friend Tiffany was in research mode again and happened upon this video.  I really hope you’ll watch it.  It’s a little lengthy {I mean, come on, who has 4:13 minutes to sit and watch a video?!?}, but it’s the last minute or so that has the most impact … I guess at least for me it did.  In fact, for some reason, I haven’t cried that much since my diagnosis.

Oh! I should tell you … U2 is the soundtrack … so maybe it is worth the time investment?!  Have I mentioned what a U2 freak I am?  No?  Another post then …

The film is a joint project of the Multiple Sclerosis International Federation (MSIF) and the Hertie Foundation launched on the first ever World Multiple Sclerosis (MS) Day, 27 May 2009. It aims to capture the attention of people worldwide, motivate them to learn more about MS and become involved in the global MS movement.  You can find more information on it here.

And I guess as a larger picture {cuz you know how I love the big picture!}, what the film tells me … is that we need to be kind to everyone.  Everyone.  We don’t know what they may be suffering with, or dealing with.  Someone may look okay on the outside, but hurting so badly on the inside.  We need to start being kinder and more understanding of those around us.

Thanks Tiff for your research powers, care and love! ;)

And just a huge thanks again … to everyone for your concern for me, for your calls, emails, flowers!  I’m loved.  I’m blessed!

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I’m not so brave.  I’m just trying to be strong.

I am not a fan of needles.  I’ve come to co-exist with them, but I truly despise them.  I absolutely can not imagine sticking myself with one … on purpose!

I’m pretty sick.  Pretty much of the time.  But I’m trying not to complain and trying my best to push through it.

And … I have no choice.  So rather fight it, complain about it, dread it … I might as well embrace it.  Right?  Big sigh …

I think of my little friend Emily, who was diagnosed with juvenile diabetes in 2nd {?} grade.  She has to poke herself all the time … she now wears an insulin pump around the clock.  She gives me courage to be brave, to be strong.

Or my friend Lori, who’s last post was heartbreaking … but from it, she’s given me strength and grace I didn’t know I was capable of.  In fact, I had a conversation with her at church on Sunday … thanking her for the strength she’s shown {at least on the outside} through her illness.  It’s given me the resolve to face my adversity {no matter the adversity}, the same way.  And my hope is, someone will someday feel the same way about what I’ve shown them.

After I last posted, I thought I would start my treatment right away.  But it’s been a bit of a run-around with the insurance company and nurse line.

The good news is, if all goes according to plan, I should have my medicine here tomorrow.  Then I can call the nurse line and schedule her to come out.  I need to have my treatment in hand before they’ll even talk to me about scheduling her.  I tried, covertly, to schedule before I had my meds … you know, try and hurry the process along.  They had no part of it.  Not even tears worked!  My hope is, if the meds arrive tomorrow, I can schedule her on Thursday or Friday to come out.

Ahh … as you might imagine I have so many emotions and thoughts surrounding this.  And I’ll share more later …

Right now I wanted to share something that hit me so strongly in church on Sunday and I thought it might speak to some of you as well.

You know the story of Job?  Amazing story!  Click here for a condensed, easy to read version.  The jist of it is, God allowed Satan to do unspeakable, unbelievable tragedies to Job.

The lesson in this, and a twist to the story I hadn’t thought of before … God trusted Job with these trials.  God knew a lesser man couldn’t handle it.  You know the old cliche?  God won’t give us more than we can handle?  How many of you just rolled your eyes?  Probably the last thing you want to hear when you’re in the midst of a trial!

But this is what I think … I consider myself privileged {if you will}, that God chose me to go through this trial.  He’s trusting me to ‘handle it.’

There may be tears, and I may have weak moments.

But I think in the midst of our most difficult circumstances and trials, if we can remember that because we’ve been chosen and trusted with our situation … then I choose not to let my God down.  I don’t want satan to rejoice … I want God to look him in the eyes and be able to say “I told you so …”

Amen?

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