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I'm a redeemed child of God and the momma to four vivacious daughters. I'm passionate about finding hidden blessings in the trials of life, living it out in an honest and open way, while encouraging those around me to believe in better.

9
Aug

struggles & random thoughts

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.

eye-photo

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.

injection sites

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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Posted in eye update, multiple sclerosis

 

10 Responses to “struggles & random thoughts”

  1. Heather says:

    It is in the leaning on others that we can be built up, cared for, & filled with love. I know it can be scary or make you feel vulnerable, but I think it is the brave soul that can share their pain and fears and ask for help. I know you are hurting, but know that we are here for you however you need us and I know we are all praying for relief & strength for you to come asap! Love you!! And PS where the pic of you in the new specs? :-)

  2. Elizabeth says:

    Oh Tracie, this is such a great post. I know it is so hard to be frank about pain–I have the hardest time sharing anything like that even with those closest to me. Isn’t it so much easier to just carry on and pretend that everything is calm inside and out?

    I admire your bravery in sharing this here, and you will be in my thoughts!

  3. Pam S. says:

    compassion-’to suffer with.’ may you receive so much. you are an incredible vessel.

  4. LobotoME says:

    oh tracie – sending hugs and healing thoughts your way! you are so brave… xo, jenny

  5. cyndi says:

    Your honesty is so refreshing. Coming clean about how we feel and asking for help is not something any of us are very good at, but to do it in such a public way. Wow! I’ve said it before and I’ll say it again…you truly are an amazing woman and such an inspiration to so many of us!

    I’ve struggled with sensitive skin for years and for the past 10 days I’ve been dealing with some seriously itchy skin on my left arm (from my hand to above my elbow). I have no idea what is causing it (which is incredibly frustrating) and all my doctor can say is that it was caused by contact. Contact with what? Well, we don’t know. I was given a celestone shot to try and calm my skin down and not only did that not help, I’ve now developed a rash around the injection site (and up my back). I was a mess last night feeling sorry for myself since I can’t seem to get my arm to stop itching and now have a funky looking rash decorating my back. Reading your post this morning has put it all in perspective for me. Thank you for helping me see past myself.

    I wish there was something I could do to help you with your present circumstance. While I can’t be there to make you laugh, help with car pool duty, or things of that nature, I can promise you that I’ll continue to read your blog, keep you in my thoughts, and pray for you. I hope my prayers are able to bring you some peace & comfort. Hugs…

  6. Rachel says:

    The “but you look fine on the outside” thing is huge. …one of the many oh-so-wonderful things about this stupid disease. (right up there with trying to figure out how to re-define yourself post-diagnosis.)
    Sometimes it feels like it would be helpful to wear a sign with big bright letters that said “I’m sick, D@mn it!”.
    …hope it helps to know that there are other folks out there who get it.

  7. Heather says:

    I know you weren’t looking to be the “face” of a disease, but your honesty and information is helping others to get what ms if really about. And honestly, “getting it” means more compassion to a disease you can’t always see on the outside & hopefully also more funding/research/solutions! keep it up!!! love you!

  8. Melinda says:

    Hi Tracie:
    I wandered over from Me Ra’s great post about you today. Your images are BEAUTIFUL! I attended Me Ra and Brian’s workshop in Seattle in June and have loved watching my “Seattle Sistas” bloom but now I’m realizing there is a whole legion of us out here, who’ve had the honor of taking the workshops and have been inspired by Me Ra and Brian to capture those special moments. I’m so glad you’re moving forward with this calling even in the face of some scary stuff. This post of yours that I’m commenting on reminded me of one of my favorite quotes: “Be kind, for everyone you meet is fighting a hard battle.” – Plato. Hard to remember when someone is yelling in your face but it definitely helps me gain some perspective later. Blessings to you!

  9. you move me, You truly move me. I read about you on MeRa’s blog site, and I just had tears rolling down my face. Tears of sadness…Tears of joy…Tears that rejoice in a Savior that you and I both serve. You’re story has inspired me to make the next step towards my dream. You give me new meaning to the verse : I can do all things through Christ that strengthens me.”
    Thank you for being a testimony..I needed to be reminded.

  10. terrie says:

    tracie, tracie…. love your new glasses. but most of all love that you aren’t too proud to realize you need support from others even though you don’t want to ask for it. enjoy exuma, you are in my prayers.

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