An Update on My Physical Abilities

A year ago, I was just getting strong enough and able to take care of myself again after living with my parents for three months. After that, I could move back home with my husband in Kentucky. We (Doug) moved into a one story house and had made sure it was  handicap accessible before I got back. Pregnancy plus multiple sclerosis (MS) is ideally supposed to help the MS, even though it’s not on meds. Well, as I learned (even though I almost already knew), I am an exceptional case. Without meds, the MS in my body was pretty terrible. I’d gone without meds for a few years right after I was diagnosed with MS, until we found a drug that worked. For the first time in ten years, I was going MS-med-free, and it seemed to be going the same way. I would get an infection, and it would trigger a relapse. New lesions appeared in my brain during pregnancy. The day after I gave birth, I tried a new med that’s supposed to help patients with MS, too (not that it’s been researched tons yet). And although new lesions didn’t appear in my brain, the weakness was still pretty terrible.

In October, I was hospitalized when I became septic with a bladder, kidney, and blood infection all at once. When I get sick, I usually lose all strength in my body. After I was discharged (and stronger because antibiotics were helping me), I started some home health physical therapy (PT) in November. In January, I started up on outpatient PT, starting at the strongest I had ever been than working with that particular PTist, Judy. (She’d worked with me when I was pregnant, too.) I told Judy the first day I saw her that I wanted to ditch the walker. And pretty soon I was walking with two arm canes, and now, if I walk with an arm cane, I only use one! I still use my walker when I’m real tired, but those times are limited. (Yay!) Then, I started up on this walking machine thing called the Lokomat. image

Basically, I go through the motions of walking, with about 50% of the effort on me. I also am not bearing any weight. For the first time in years, I don’t have to use most all my muscles to activate a weak one. The longest I have gone is for 30 minutes (as of April 3). This has also helped me with my stability! For the first time since January 2016, I have been able to stand for a whole shower, instead of needing a shower bench to sit on part way (or the whole way) through.

We have hired help at home (my caretaker/nanny) that helps me take care of my little girl, as I still can’t transfer her well or really walk with her yet. Whoever is there is also my hands and feet, as I still get tired pretty easily by running around or lifting things. And I call it “supervision” of me to make sure I don’t do something I probably shouldn’t be doing. They’ve been with me since Lydia was three weeks old, and in that time, I have better learned to ask for help when I need it. (Um, Lydia is now seven months old. SEVEN! Next thing I know, she’ll be off to school!? Lol.) Amanda, the gal who comes to our house to help me out that’s closest to my age, has become a dear friend of mine. I guess that longing for a friend to just sit and have coffee with I’ve had for years has finally been fulfilled!

So, I’m making a ton of progress. And, we just found out that after more than a MONTH, the only MS med that has ever really worked for me has FINALLY been cleared by my new insurance company, so I can start taking that again! I can’t even imagine my improvements after that starts! But don’t worry, I’ll keep ya’ll updated. 😀

Hugs, everyone! (Even if I don’t know you, I’m gonna send you a hug. I like hugs, and I’m excited about this stuff.)

Anna

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When I am weak, I am strong.

When I can’t walk, I feel like a FAILURE.  I feel I can’t physically do all I usually can do just fine—I feel like my body is making up an excuse for a cop-out.

When I can’t walk, I feel HELPLESS.  I need people to help me do what I SHOULD be able to do.  I am so thankful for friends who help me.

When I can’t walk, I feel like GIVING UP on everything else, too.  I ignore invisible weakness, and push through other things unseen—but when I am having troubles walking on my own…I’ve reached a bad point.

When I can’t walk, I feel TRAPPED.  Sometimes, I DO have energy, but I can’t do anything about it.  What can I do when weakness of my body restricts me?

When I can’t walk, I feel EMBARASSED.  I’m such a slow walker, trying so hard to lift up my foot enough so I don’t trip on it, and take a step.  The more I can’t, the slower I move.

When I can’t walk, I sometimes FORGET about the Lord, who is lifting me up every moment.  I forget that I’m alive and can have hope for a better future despite this disease.

When I can’t walk, my weakness is VISIBLE.  In my weakness, Christ’s power is made perfect, and I am strong in Him.  FOR WHEN I AM WEAK, I AM STRONG.  Do you see Christ’s power in me?  If not, maybe it’s okay when I can’t walk well, so that His power may shine through me!

Anna 🙂

“Five, Six, Pick Up Sticks!”

I can’t even describe it.  My physical struggles this morning help me understand others.  I am home at the moment, spending the last few weeks here until I go back to school.  Today, I volunteered myself to pick up branches and sticks before mowing the lawn today.  We have a pretty big front lawn, and eight trees live there.  Little did I know exactly how much the two storms we had this week blew down.  I’m only half done now, and I’m going back out there in a bit.  I’m not sure if it’s wise to be going back out there, as the MS is being really stupid this morning, but I do believe I am.

Walking was tough going.  But crawling was so much easier.  The ground always welcomed me.  Even when I had intended to stay standing and pick up a few sticks, the ground drew me to it.  I crawled around, gathering sticks until my hands were full.  Then, I had to get back up.  Each time I attempted rising, I had to pause.  This was usually the point when I would say a little prayer.  Sometimes it took two or three attempts to rise up once again.  Other times, I would be almost up and I’d fall back down to the ground.  Still other times, I’d crawl back to the ranger (where I would deposit the sticks), that I could hang on to it and use it to help me up.  This didn’t always work.  Eventually, I would get up, go and cast the sticks into the back of the ranger, and then turn around to see where others were.  I started looking for areas where there were many sticks in one general area that I wouldn’t have to get up right away.  Yeah, after falling and struggling to get back up, I did the same thing.  Over and over again.

It’s difficult sometimes to stay walking upright and obeying God when falling into sin and staying down is so much easier.  Sin always welcomes us to it, and we find ourselves falling when we don’t mean to.  But God uses each valley we go through, each fall we encounter, to teach us.  Work is being done by us and in us for the Lord even when we don’t realize it.  The sticks and branches are everywhere, and it seems like there are always more to pick up.  But we keep picking them up.  Eventually, they’ll all be picked up and the lawn, branchless and home of the many trees that were the culprits of the hassle, will be mowed.  The trees are beautiful in themselves, and they’ve been a part of the lawn ever since I can remember.  Storms come in our lives and blow things everywhere, but the sun comes back!  Sometimes, we are helping to pick up the sticks left from somebody else’s storm, and God uses us that way.  (I am just full of analogies today.  But don’t worry, I’m done.)  God works in ways I’ll never understand, and my struggles this morning got me thinking about it.  But to describe it simply can’t be done.  So I’ll rest in the Lord and trust him through it all.  He gives me strength to make it through struggles.  Even if it’s not physical, I trust what he’s doing!

Smiling despite circumstances, Anna =)^2

Letting You in My Walls…

I was diagnosed with MS when I was thirteen years old.  It will NEVER define me.  People who know me don’t see my limp anymore, unless it’s worse than usual.  People who know I have MS forget because I don’t let it get me down and I am positive a lot of the time.  I don’t let people see in on the secret that every single day has its own struggle.  I cover up the knowledge that I’m getting a teensy bit worse with a smile.  If I could, I myself would forget about the disease, as well.  But it becomes more difficult to manage when I pretend it’s not there.  If I tuck the disease away for a time, its shadow gets bigger and bigger until I can’t handle it by myself anymore.  And then who besides God do I tell?  Will anybody hear me?  Will anybody help me?  Who can do something about it? I do not want to be treated differently.

Anna, I hear.  You’re not being selfish by letting others know your struggles.  You find joy in comforting others who are struggling.  Let them find joy in comforting you.  Asking others to pray for you is not selfish, either.  It’s what I want you to do.

At the words I am reminded of my hope and the reason for my positivity: Jesus.  No, I can’t physically keep up with others.  I let them encourage me or give me a piggy-back ride.  However, I can spiritually run alongside someone else.  I can encourage them and lead them to one who is stronger than me who won’t hesitate to lift them into his arms to carry them: Jesus.

I worry because I don’t know what each day will bring, especially regarding the MS.  But Jesus whispers, Pass it over here to me.  When I do, it does not weigh me down any longer.  I get frustrated because I have more responsibility than I want; have had this responsibility for too long.  But Anna, I hear, it doesn’t have to be such a big responsibility if you keep letting me help.  So I pass that over to my Lord, as well.  There are people who care about you, Anna.  Let them in.

So I make a list, because I’m good at those.  In my list, I give reasons why I’m frustrated.  I share that even though people don’t notice my limp anymore, I do, because it’s hard walking with a limp.  I share how quickly weakness sets in and what that sometimes affects.  I share my frustration of the symptoms I deal with that nobody sees, the ones I don’t like to talk about because nobody understands them.  I make another list, a list of lies that I’ve been believing, lies that transform into stress that in turn affects my symptoms.  I make a final list, a list of ways that could help people experience and try to understand.  But who would want to make themselves physically tired and then walk around with a weight around their left ankle, just to feel how heavy it gets by the end of the day?  Who would want to wear gloves doing everyday activities just to experience my daily struggles?

I am reminded once again of the fire that burns inside now, the fires of my passion and love for my savior and redeemer, Jesus Christ.  I’ve struggled, too, I hear. And you have me.  No struggle shall overtake you, for I am bigger than it all.  And I PROMISE that we will get through this—together.

Jesus Christ is my reason for everything.  He is my shield and my refuge.  He is my strength, and he is my smile.

 

“Always” by Passion

 

My foes are many
They rise against me
But I will hold my ground
I will not fear the war
I will not fear the storm
My help is on the way
My help is on the way

Oh, my God
He will not delay
My refuge and strength always
I will not fear
His promise is true
My God will come through always
Always

Trouble surrounds me
Chaos abounding
My soul will rest in You
I will not fear the war
I will not fear the storm
My help is on the way
My help is on the way

I lift my eyes up
My help comes from the Lord