Category Archives: Multiple Sclerosis

Parting Ways

All to the Glory of God–that is why I blog and share my story so openly.  I want others to know it is possible to live and parent well with mental illness.  This, by necessity, causes my posts to be brutally honest, and that is not always pretty.
I have always endeavored to live by the verse 2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

This is not me.  This is not her.  It used to be me.  It’s never been her.

I spent several years in and out of this wheelchair due to Multiple Sclerosis (MS).  I have learned to walk three times in my life…and that last time seems to have been the charm as the MS has been in remission since before that almost 11-year-old up there was even in the womb and I have gone from using a wheelchair to running 5ks, 10ks, and soon a half marathon!

So, today, that wheelchair and I are parting ways.  Permanently.  I am taking back my attic space and you, dear wheeled chariot, are going back to work.

Let me explain.

My family and I felt the call a few months ago to begin helping refugees who are fleeing horrible, horrible situations.  These new Americans have been vetted by every level of government and have waited through years of paperwork to get here.  They are here to be safe, to be free.

I didn’t know what to expect the first time I visited Mary (name changed) but what I found, was a friend–one of my most favorite people in the world.  I like to think I help her and her family, but what I know, is I love being around her and her family.  It brings me much joy and happiness.

Then there was an e-mail from a local agency asking me to help another family.  I was scared to say yes, but thanks to google translate all went well and I got them to their doctor appointment.  One of the family members Helen (name changed) was in a wheelchair.  A really old beat up wheelchair.  In this family, I saw loneliness.  I have known loneliness many times in my life and seeing it so naked before me, I wanted to run…but my heart was drawn to them.

Then, a few weeks later, the agency sent out a list of things needed for a family.  We had two of those items.  A sofa and a vacuum a neighbor had given us when they moved.  I ignored the wheelchair on that list.  Yes, I have one…but I can’t give it away…what if?

Last night, we went to deliver the sofa and the vacuum.  And who greeted us, but Stephen (name changed), Helen’s brother.  They were the ones moving into an apartment needing these items.  And there was Helen, sitting on the floor, needing a wheelchair.  And there was me, fresh from running 5 miles, owning a wheelchair. But, what if…

What if what?

I called hubby to talk to him about it.  He was all for passing along the chair…and she is not much bigger than I…so even though it was made for me…it seems like it is time for it to be made for her.

So today, I put Sue to work cleaning a decade plus of grime off my chair.  Tonight I am going to drop it off to Helen.  Friday I am going to attempt another 10 mile run.

All by the grace of God.

When Your Legs Don’t Work Like They Used to Before

All to the Glory of God–that is why I blog and share my story so openly.  I want others to know it is possible to live and parent well with mental illness.  This, by necessity, causes my posts to be brutally honest, and that is not always pretty.
I have always endeavored to live by the verse 2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

This song is in my running playlist.  It gets me every.single.time.  Because it IS in my RUNNING playlist.

I was not a strong, healthy child.  I was not coordinated.  I was not tough or competitive.  I was not encouraged to become any of those things.  Then, at the age of 15, I was diagnosed with multiple sclerosis (MS).  Walking became a day-to-day question.  I landed in a wheelchair.  All those words spoken about how I couldn’t do things seemed to be spot on.  I couldn’t do anything.

Then a true miracle happened just over 11 years ago.  I went into remission from the MS.  I have now been in remission from the MS almost as long as I dealt with active disease.  Remission.  That is a beautiful word.

Medical Definition of remission. : a state or period during which the symptoms of a disease are abated <cancer in remission after treatment>—compare arrest, cure 1, intermission. (Mirriam-Webster  Dictionary)

A state or period during which the symptoms of a disease are abated.  In the midst of having babies, working, keeping up with life, I almost didn’t notice the remission.  It was just there and I almost took it for granted.

Then, after Sue was born, I started exercising and running.  All the sudden the value of remission and what it really meant, and was, hit me.  Here I was, the girl who wasn’t even supposed to be able to keep up with a household without bringing in help, according to the doctors, past her 20s, was in actuality, working, raising two kids, kind of keeping up with a house (as much as I ever had), and now, learning how to run.

Running.  Me running.  The girl who had always been told she couldn’t do things.  That she wasn’t strong enough for what other kids did, running.

Every step I take, whether it is fast or just barely moving, I do to the glory of God.  He is the one who saw fit to give me back my balance, to give me back my strength, to give me back my legs, to give me back so much more than I could ever ask or imagine.

Ephesians 3:20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us

He has given me so much.  And I am thankful for all of it.  And now I am dreaming big.  I am dreaming of picking up my pace so I can run with some other ladies in a relay (me??) and even bigger yet, I am dreaming of running a 1/2 marathon in September.  I have even gone so far as to register for the race.  I have put my money where my mouth is and in 245 days I will put my feet where my heart never dreamed they would be.

It’s a long journey, getting from those first running steps with the Wii fit until today, but today found me braving the elements like a good Michigander and getting in a few miles.  I had to do some tiptoeing through ice, but it felt great to be outside.

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Oh My Heart

Friday was my birthday.  It was a glorious day, so my girls and I headed out to a local park that I just love.

After I did some cleaning around the house.

I enjoyed every minute of both.

You see, about 20 years ago there were days I only dreamed of doing either thing.  I was diagnosed with Multiple Sclerosis in my teens.  It was a bumpy ride.  There were hospital stays, 15 of them to be exact.  There were medication injections, a cane, a walker, a wheelchair, car hand controls.  Did I mention it was a bumpy ride?  I was told by doctors that things would probably get worse.  It was pretty bleak.

And then a friend introduced me to Dr. R–a neurologist who specialized in MS.  Things changed.  He took care of medical needs, that previously landed me in the hospital, in his clinic. Medication needs that had previously taken me out of my life for days at a time, now took 3 hours of my time every three weeks.  Something else amazing also took place during my appointments with Dr. R–he listened, he worked to improve my quality of life, and he cared.  When my now hubby proposed–Dr. R  and his staff worked to get me  as healthy and as strong as possible so I could enjoy my wedding.

Through Dr. R encouragement and consistent treatment of the MS, I began to have hope my hubby and I could have a family.  Up until Dr. R, I was so afraid of my children having a weak mom and possibly MS themselves, that I refused to consider having a family.  Dr. R showed me MS was treatable, manageable, and not a death sentence.
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The MS receded a bit, and hubby and I had Caitlyn, then Sue, and finally Patrice.  And haven’t required any treatment of the MS in 10  years.  During my last appointment with Dr. R, I asked him how this was possible.  He said, “well maybe you have a course of MS.”  To which I laughed.  Fifteen hospital stays, 2 for a month each, years of steroid treatments, hand controls on my car and in and out of a wheelchair…mild!  “Well, he said, we know hormones play a roll in MS starting and they can play a roll in MS stopping.”

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I now exercise a lot, chase my kids around, homeschool my kids, am working on getting back to running…all things I personally never dreamed of doing…all because of the confidence Dr. R gave me to step out of my fears.

This post has taken me a week to write.  In part because I wanted it to be just perfect, in part because I never wanted to write it.  You see, I found out last week that Dr. R passed away.  I haven’t seen him in quite a few years due to the MS being in remission, but I always knew he would be there if I needed him.  And now he’s not.  My heart breaks for his family, my heart breaks for the MS community, and my heart breaks for me.

What will we do without Dr. R?

 

 

 

Did I Hear You Right?

I am currently in a partial hospital program to learn more about how to manage my bipolar symptoms.  I have an extra day home today because the weather decided to turn, well, wintery.

So far, the program has been great, though exhausting.  I came home last night and slept 11 hours.  I don’t know what is wiping me out so much.  The hours of sitting in a warm room.  The listening carefully to others comments.  The thinking about all the things that brought me to this program.  The Bipolar itself. I don’t know what, but something is wearing me out.

But I would say, after the first two days, going to the program has been a good choice and will reap good rewards.  Except for a hiccup yesterday morning.

Each morning we meet with a nurse to review our previous evenings and our goals for the training day.  Yesterday, the particular nurse had taken my medical history, so knew about the Multiple Sclerosis (MS) in my history just previous to our meeting together as a group.

As I talked about my husband, she did the math and figured out I had been dealing with active illness at the time my husband and I married.  And she said, are  you ready?

Wow, you are really lucky your husband married you with you having MS.

Yup, she said that.  To me.  In a group.  And reduced me, excuse the pun, to a Charity case.  Wasn’t that so wonderful and altruistic of my husband to marry me?

Thanks lady.  I might have spent the last 13 years telling myself he married me for me and with one comment you sideswiped away a lot of progress.  So here I sit, typing this out to you in tears.

Hubby and I might have joked about it last night, but at the core of my being,  it is anything but a joke.

I am Charity.

I am not MS.

I am not Bipolar Disorder.

I am not Generalized Anxiety Disorder.

Maybe I am all those things.

Oh My God.  Thank you dear nurse, for gutting my belief I am worthy of love just for who I am.

EDIT:  I approached the staff at the program and the nurse sincerely apologized for her comment.  She was very sweet and sincere.

Turning the Tables

Okay, here is a TMI post.  Read or don’t read.  You’ve been warned.

As I have mentioned, I am exercising and trying to figure out my eating like crazy.  My typical day includes 90 days of exercise.  I start with PiYo in the morning and then in the evening hit the treadmill.  I watch Disney movies (what??  I like them) and walk.  Well, most of the time.  Last Tuesday I RAN two miles on the treadmill.  I was watching Mulan.  I walked .18 of a mile then threw a shirt over the treadmill display and decided to run until they got to the part where the “soldiers” were singing about wishing they had worked harder in gym class.  That is, at my pace, two miles into the movie!!!!!  I am telling you what.  That run still makes me  smile.

Thursday night I watched Aladdin and logged 1 mile running.  There wasn’t quite as much in me that night.

Today I ventured outside.  I was so excited to try and pound out a mile or two.  Two bad I took the route that starts with a steep and then long hill, running into the wind.  I made it half a mile and had to slow down to a walk.  And coughed for a couple hours afterward.  I guess that cold last week is still hanging around.

I want to run 5K again, 3.1 miles, so bad I can taste it.  My goal is at least a 5K to celebrate my 40th birthday.

There is a wonderful beauty in the irony that will hold.

On my 20th birthday, I had been sick with Multiple Sclerosis for five years and was taking the first medication to ever show promise in giving a person more times in remission, but not necessarily better long term outcomes.

By my thirtieth birthday, I had done 15 hospital stays over a two year period, including learning how to walk again–twice after the MS yanked that freedom from me.  I was, by that birthday, into the second year of doing pulse IV steroid doses every 3 weeks just to try and be mobile.  We had to plan my meds around my wedding in hopes I would make it through the ceremony and honeymoon without the wheelchair.  I love my wedding pictures,  but hate the moon face I had thanks to those medications.

Thankfully, I went into remission, we had Caitlyn, then we had Sue, and finally Patrice.  I ended up being one of the very blessed people who experienced remission during and after pregnancy…and ever since.

Roughly four years ago, I ran my first step.  Then started doing 5Ks, a 10K and ran the five miles across the Mackinaw Bridge on Labor Day 3 years ago.

Unfortunately, the high doses of a particular medication I took for the Bipolar caused extreme muscle weakness.  I stopped running and lost my confidence entirely by May 2012.  Exercise and strength have been missing ever since…until about a month ago.  A friend of mine and my dear cousin, along with a host of other people had been encouraging me to keep trying.  And I finally started again.  It didn’t go well at all.  So I went back to walking and started doing PiYo.  I am now a little over a month into those Beachbody workouts and I feel so much stronger.  I am back to craving exercise, it makes me feel good no matter what the scale or Bipolar tell me.

2014-10-21 13.03.42

I’m seeing the start of weight and inches lost.  Here’s the TMI:  I have lost 6.5 inches around my hips and an inch in one leg.  And remember those steroid doses?  They gave me the gift of a rotten layer of fat over my ribs.  I hate that fat.  Maybe more than any other jiggles on my body.  But this week, I realized, I can no longer pinch the fat there!!!  There is still a lot there–40 pounds to lose–but progress is good.

I love that I am taking off that Ab weight.  The MS left that horrible junk, but now I am showing the MS who is boss by exercising, living, and doing.

So instead of those battles with MS during those other decades?  This decade, I am going to celebrate strength and sticking it to the MS.  I’m going to take my strength and work and run with it!!

Cake Week

Two.  Two Birthday cakes.  Two little girls.  Having  special days.

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A friend who can decorate Barbie cakes (Isn’t she pretty and you would be totally blown away by how fast my friend decorated her)

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Ass cream and Hairy Queen.  I love how the girls search for a way to say a word when they don’t know, or just can’t remember.

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And there are no words how thankful I am for a hubby/daddy who knows how to rollerblade/rollerskate!!!  I tried, I really did.  I ended up in tears from frustration, embarrassment and failure.

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I am beyond thrilled my walker of days gone by, that I leaned on so heavily to get from one point to another when my brain couldn’t tell the rest of my body quite how to work, are now being used by little girls learning to skate.

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I am hopelessly in love with a man who will come home and help our absentminded 6 year old look for her glasses she lost, again.  He searched and cleaned with her…so mama didn’t go bezerk yelling at her.

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I am so blessed to have him for so many reasons.  He plants a garden and then cans yummy things for us to enjoy all winter.

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I run as often as possible and I am so excited that my distances are increasing and I am now running far enough that my 8 year old declares she is not going with me anymore because I run too much.  I so appreciate that my hubby never seems to begrudge me my running time and I can’t express what all the support from friends on Facebook and text message means to me.  It makes my heart sing and my smile huge.

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My heart sings with the beautiful weather we have been happening.  And I am VERY proud of myself that when I took the girls to the waterpark yesterday, and found that the 6 year old had no shoes with her whatsoever, even after being told to get them and asked countless times if she had them, that I kept my cool and that her sisters, while deeply disappointed, didn’t give her too hard of a time when we had to go home instead of having fun.

These are my 10 things I am thankful for.  How about you?

Thanks to my friend at Make Mommy Go Something Something,  I found this blog hop and am joining in over at Considerings

Loss of a Friend

Is it possible to make a friend by reading a book they wrote?  I believe so.  I believe Annette Funicello became a friend of mine when I read her book, A Dream is a Wish Your Heart Makes.  I didn’t relate to her fame or fortune obviously,  but I related to her battle with Multiple Sclerosis.

I read her book in 1994 a few years after I was diagnosed at the age of 15.  It felt so good to read her words and to find someone who understood.  Someone who was bringing light to a disease that was often hidden and misunderstood.

I battled MS many, many years.  I did many of the injectable medications, 15 hospital stays in 3 years and 2 years of IV steroids in a freestanding clinic.

In that time I finished high school, put myself through college, spent a couple years on the mission field, met and got engaged to a miserable jerk, thankfully got dumped, met a great guy and got married.

Then suddenly I received the golden ticket of MS.  I went into spontaneous remission.  We started a family.  I have been in remission now for almost 7 years.

My girls don’t know a mama in a wheelchair.  They don’t know a mama sick from powerful steroids and medications.  They know a mama that can play with them. They know a mama who is getting back to running.  They know a mama who was greatly inspired by Annette Funicello.  She gave their mama hope when she needed it.  She let a young girl know she was not alone with this crummy disease.

I have cried so much since I saw the tweet about Annette passing away Monday at the age of 70 from complications of the MS.  I don’t know what to do to honor my friend, but there must be something.  Some way,  I can join the many who will seek to honor her in any number of fashions.  I don’t know what that will look like, but know, my friend, you will not be forgotten.IMG_20130409_3My Patrice wearing her Disney jacket (she, at age 2, is in no way interested in standing still for a picture)

 

And the world goes round

But not always in a good way…

I have been in remission from Multiple Sclerosis for 6+ years.  My main issue with the MS was walking, and a lot of dizziness.

It has been nice to be free of it.

Then my psych put me on lithium.  One of the side effects is dizziness.  It was mild.  Worth living with.

The last two days have seen it explode.

Today it is almost constant and causing lots of visual disturbances.

And I’m scared.

You better believe I am hoping it is the lithium.  That is likely to be an easy fix.  I have a call into my psych in hopes we can easily adjust the medication.

Anything but the MS.  Anything.

Can I Do Saturday Confessions on Sunday?

Something Something Button

I have a million blog posts in my mind. I have a million other thoughts in my mind. It is hard to put any of them together. I couldn’t come anywhere near putting them together yesterday.

So, can you join me in pretending I am writing my Secret Mommyhood Confessions on Saturday? I’ll confess my need to follow all rules, even which day to post topics, on another Sunday Saturday…

In case you missed it, I recently weaned Patrice after 19 months of nursing. Of course, if you missed that, we have never crossed paths on twitter or my blog, so I should say, “HELLO, welcome to my part of the web!”

Back to the topic at hand.

Weaning her makes me sad, and scared.

Now before you think I’m getting on a high horse about how breast is best…let me pause and say, I believe that, but that is not any part of this blog post. I’ll let others worry about beating that drum.

I’m sad and scared for me, not her.

I’m sad because I was uber proud of being a nursing mama. It was something I set out to do and did it. Big confession here, I did it was some judgment of other mamas and from a high horse, but that is another topic, heck probably one for the doctor and I to deal with. Please let me say I’ve been learning a lot about that high horse and I’m climbing off of it.

I’m sad because now anybody can do any or all of Patrice’s care. She doesn’t really need me anymore. Daddy can do everything I can. A lot of it better than I. I can’t sit and cuddle her without her wanting to nurse. This morning she clawed me when I wouldn’t nurse her and tried to just hold her. She climbs into daddy and “Miss Susie’s” arms to be rocked. Not mine. Never mine.

I’m scared I will lose my place in the breastfeeding world. Who will listen to someone who weaned their baby for their own needs instead of letting the baby self-wean?

I’m scared the depression will deepen, as it already has, due to the hormone changes associated with weaning. Weaning itself can cause postpartum depression. What if I get even worse? I am hanging on by fingernails as it is.

And my biggest fear is the hormone changes will allow the Multiple Sclerosis to come out of remission and I will lose the physical progress I have made. And that terrifies me. A horrible run, where you fall flat on your face, is better than one single minute of steroid treatments for MS or half a moment in a wheelchair. What if the nursing and pregnancy, continuous for all these years, has kept me healthy. What will I do if I wake up one morning and I literally no longer know which was is up? I am pickin’ scared of that possibility. Just typing it is making me dizzy. Oh no.

(Um, yeah, I think it is a good thing I have a standing appointment with my doctor every week!!!!!)

What makes you sad or scared about a big change in your life?

Join me at Kimberly’s.

Hodge Podge of Thanks 382 -400

This week’s Multitude Monday’s is going to start with a story about Patrice and climbing and showers and cinnamon rolls.

Yesterday, Patrice woke up with quite the runny nose, so she and I stayed home from church. I hate the thought of being that mom who brings their child to nursery only to make all the other kids sick, so we stayed home. I straightened up the kitchen and then decided to enjoy a leisurely shower.

Patrice is a climber, but I thought I had everything blocked off.

I was wrong.

I come out of my shower refreshed to find a little girl on a chair at the counter, finishing off two, count them two, cinnamon rolls from Ikea, a dum dum sucker she found in her sister’s Valentine’s Day candy bag, and a sleeve of saltine crackers.

She handed me what was left of the rolls and crackers, the sucker, which she had unwrapped and was eating properly, was hers!

My dum dum sucker. I opened it, I'm eating it

That was at about 11:30 am. Patrice did not eat again until 8 pm. All offers of food were turned down!

382 (112). Nice hot showers
383 (113). Little girl surprises after said shower
384 (114). Little girls strong and healthy enough to get into trouble
385 (115). Wonderful weekends meeting new friends
386 (116). Comfortably wearing a size 8 pair of jeans for the first time in 8 years
387 (117). Pretty new shirts
388 (118). Lovely paintings around my home that were painted by my mother-in-law
389 (119). Friends, on-line and in the flesh
390 (120). New projects at work.
391 (121). Understanding new projects at work
392 (122). Meetings at work getting postponed when I am not ready to handle them
393 (123). Yummy cucumber water
394 (124). Worrying about getting my workouts in, rather than getting out of my wheelchair
395 (125). Talking about running 1/2 marathons instead of learning how to walk again after an MS attack
396 (126). Buying me a punching bag for exercise rather than making sure our house is handicap accessible
397 (127). New medications working
398 (128). Side effects subsiding
399 (129). Colorful rice
400 (130). Being able to pray again.

For what are you thankful?