Category Archives: Multiple Sclerosis

Can I Do Saturday Confessions on Sunday?

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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?

I Started This Thought Earlier…Our Testimonies

I have been doing a lot of reading, praying and learning about trusting the Lord.  One thing mentioned in some of the teaching I have been reading is remembering to give testimony.  Remembering what the Lord has done.  Sharing that testimony.  I have done some of that in other posts, like this one, but I want to go a little deeper in my life this time around.  Grab your favorite seat and come along with me.

Deuteronomy 6:17 says:

“…keep my commandments, keep my statues and keep my testimonies”

paraphrase taken from A New Thing Ministries Motivation by Kim Potter

Testimonies.  The Word of our Testimonies.  Revelation 12:11 says,

“They overcame him by the blood of the Lamb and by the word of their testimony…”

I desire to be an overcomer in many areas and many ways.  So here I take a few moments to share my testimonies.

My parents did not have a lot of money when I was growing up, but there was a season where the Lord called them to put me in private Christian schools.  And while they were not as expensive as they are now, it was definitely a sacrifice.  Money was very tight, and part way through my 8th grade year, the money just wasn’t there; I was headed back to public school.  It came down to the day I cleaned out my locker.  Friends had planned a going away party, I had handed off some of my chapel duties to others.  I went home heavy hearted.  My mother met me at the door.  Someone had anonymously paid my tuition for the rest of the year.

I went on several mission trips to Mexico and a couple other places in high school.  The fundraising was always up to me.  The Lord provided each and every time.

Since Junior High, I knew I wanted to go to a private Christian College, Spring Arbor, and I knew I would be on my own.  I got some scholarships and grants, but at the end of it all there was a shortfall.  At the final hour, another grant was found.  I could go.  Even when I got there I was going to be paying a great deal by working on campus.  The amount was almost crushing.  But I went each month to make a payment.  The second or third month I was told by the business office that I did not have any balance.  Another scholarship, that I was completely unaware of, had come through.  I owed no more.

After college, I did not find a job right away, rather, I went on the mission field for the summer.  The Lord provided every penny of the support I had to raise, not just for one, but for two 4 month tours.

I got very sick with some asthma issues while travelling.  They continued to give me a great deal of trouble for several years.  But when I got really sick with the Multiple Sclerosis, the Lord took the breathing issues and they have never returned.

But I traded the asthma for severe issues with the MS that I had been diagnosed with at 15 years old.  As the doctors pointed out, the asthma could kill me while the MS would not, but that is little comfort when you are in and out of the hospital 15 times in 3 years in your mid-20s.  I was in and out of a wheelchair and kept getting sicker.  But through it all the Lord was faithful.  He used the times in the hospital to get my attention back on Himself, until the day He chose to put my MS in remission, where it has been for 6 years.  Yes, medication helped, pregnancy helped, nursing my babies helped, but the Lord is the true Miracle giver.  He has brought me from a wheelchair to chasing three kids and training for 5k races.

He heard my heart cry for a family and has given me a wonderful husband and three beautiful girls.  They grow me, challenge me and bless me.

His ear was inclined to me when I begged Him to turn my breech baby, Patrice, back to proper birth position.  He used all our efforts and she was born naturally and beautifully.

Over the last year He has heard my cry many times when the darkness of postpartum depression threatened to overtake me.  He raised up an army of people to pray for me, support me and love me.  He used people I trusted to lead me to those who could help me find the road to reclaim my mental health.

He is so faithful.  He deserves all the glory.  He deserves the word of my testimony.

My Other Health Concern

My first baby girl will be 5 in two weeks.  Two weeks!  Wow.  Later that week, my third baby girl will be 1.  I can not believe it!  And the crazy part is neither of them, or their sister for that matter, were ever “supposed” to exist.

I was diagnosed over 21 years ago with Multiple Sclerosis.  MS is a neurolgical disease that affects the central nervous system’s (brain and spinal cord) ability to communicate with the rest of the body.  Since it affects the central nervous system, which controls the whole body, it can affect any part of the body.  Any part.  It looks different on everyone.  For some it causes only mild issues, for others it causes severe disability.

When I was first diagnosed, there was very little treatment.  They could give you steroids to help when things got really bad but due to the side effects of the mediations, doctors often required your symptoms to persist for 5-7 days before they would prescrible the steroids.  And there was no preventative treatment and definitely no cure.

A lot has changed in 21 years.  There are now several medications that have been shown to slow the progression of the disease and newer treatments that have shown great promise in stopping the disease from getting much worse, but none are cures.

Due to getting sick when I was so young, I was told by several doctors that I would most likely never have kids.  I doubted if I would ever get married.  Who would want to marry someone so sick?  Especially when in my mid-20s when I did 15 hosptital stays in 3 years, a couple of those stays lasting a month while I went through therapy to regain my ability to walk.  Both times I went home in a wheelchair.  Things looked pretty bleak. 

Surprise, surprise, in the midst of it I did find a man who loved me.  And shortly after we met, a friend recommended a neurologist who specialized in MS.  He changed my treatment plan, to be more preventative in nature, instead of waiting for a downturn to do the IV steroids, we began doing them on a schedule, every 3 weeks.  It was nice to not be in the hospital.  Let me tell you.  But it was still hard.  And I still thought I would never have kids.  I was so glad I could again walk, but I desperately wanted a family.  But I thought kids deserved a healthy mama, not what I would be able to offer them.

Then, as sometimes happens with MS, I went into remission.  My hubby and I started talking about a family.  My neurologist was all for it.  I went off all my meds, and 11 months later we had Caitlyn.  I stayed healthy.  I did not need any medications.  And then along came Sue.  Again, I stayed healthy.  I took up running and began running 5k races!!!  Every step is a celebration and a silent Hallelujah to the Lord for bringing me to health. 

Then came Patrice.

I continue to be very healthy.  My neurologist now talks about my disease being mild.  And I love that.

No longer do I wake up every morning wondering if I will be able to walk, move my hands, sit up, instead I wake up counting how many times the baby gets me up.  Way better I tell ya!

Yesterday I made a new bloggy friend.  She is marking 2 years of remission from MS.  And that is a very big thing.  I celebrate with her and hope you will too.

I am also linking this up with Sunday Best at Feels Like Home.  Check out the other posts!

Wonder for 5 Minute Friday


Oh I wonder, wonder, wonder, who, oh who, who wrote the book of love.

I look at my life and see a lot of love.  Yes, in my children, but even more so in my husband.  He is an amazing man.  He makes me laugh.  He holds me while I cry.  He drives me bananas.  He loves me by loving our girls.

God wrote our book of love.  And a precious story it is.  He wrote the pages where my husband loved me in spite of the Multiple Sclerosis. Where he loved me in spite of an explosive temper.  Where he loved me through the ups and downs of three pregnancies and the darkness of postpartum depression.

And what a beautiful book of love He wrote for us.

What makes you wonder?

Head on over to the Gypsy Mama and share

The end of the week – a good time for few words.

Want to take five minutes with me and see which ones bubble to the surface?

Let’s just write and not worry if it’s just right or not. Here’s how we do it:

1. Write for 5 minutes flat with no editing or tweaking.

2. Link back here and invite others to join in {you can grab the button code in my right side bar}

3. Go and tell the person who linked up before you what their words meant to you. Every writer longs to feel heard. {And if you love us, consider turning off word verification for the day to make it easier for folks to leave you some encouragement}

It’s a great way to exhale at the end of a beautiful week.

Praying and Providing

I have been praying for the Lord to provide for us in a big, big way.  Huge.  Feels like one of the biggest prayers of my life.  I cannot fathom how the Lord is going to be able to do this.  It is just too big for my brain.  I am praying that is the way He likes it.  Trust me, as His answer unfolds, we will only be able to stand back and declare, “See what the Lord has done on our behalf!”  And there will be no way for anyone to argue it was not a miracle.

In the process of praying, I have been praying and reading scriptures about not being afraid.  About God’s provision.  About peace. 

Have I mentioned, what I am praying for is beyond my wildest dreams and beyond comprehension?

But I have seen the Lord work mightily.  Maybe not in how I would expect, but mightily.  Take the running I am always blogging about…10 years ago I was in and out of a wheelchair due to Multiple Sclerosis.  Trust me, no one ever thought I would run for fun at that point.  No one.  Actually at the time, a doctor told me he thought I would walk again but he didn’t know when.  Fast forward a few months, and a friend gave me the name of a neurologist who specializes in MS.  He started treating the MS aggressively.  And he encouraged me to dream again.  I got married.  My health stabilized for just a minute…hubby and I decided to dare to start a family…my doctor was all for it.  11 months later Caitlyn was born…  Remember that minute that my health stabilized?  It has now last almost 6 years.  No one can quite explain it, as far as we can figure, the horomone changes related to pregnancy and nursing have changed the behavior of my MS.  I have gone from being sick most of the time, to never.  Praise the Lord!  He chose to move mightily on my behalf…

There have been other times and I will share more as I walk this new journey of trusting the Lord.  Please feel free to share some of your own stories in the comments below…we can all stand to hear how the Lord works!!!

Every Day–5 Minute Friday

 
The Gypsy Mama hosts a really great blog hop on Fridays…5 Minute Friday.  Here are the “rules”
 
Wanna just write? Without wondering if it’s just right?
Indulge in five rich, delicious minutes of pure writing.

Tell your readers you’re linking up here and invite them to dig in too.

And most importantly, go visit, read, and compliment the five minute chef who served something up right before you.

Easy peasy.

This prompt of every day has me a little stumped.  The Gypsy Mama wrote a great post, but I can’t very well copy her’s, now can I?  So I had to think.  A little hard to do after a really long day at work.  I have only been back two days and both have been crazy busy.  Ah well.  Here is what came to mind as I thought about every day…
I have a history of Multiple Sclerosis.  I say it that way because I have been in remission for 5 years (totally awesome, Praise the Lord, I know!)  But before the remission, I was really sick.  Some days I even spent in a wheelchair because I could not walk.  Other days I could not use my right hand as it would claw up and not move.  There were lots of different things that could be wrong at anytime, so every day I did an inventory before I even got out of bed, I would move each part of my body to see if it was going to work that day.  But slowly, as I got more confident in the remission, I quit testing every day.
That every day testing has returned, but for a different reason.  Now, because of the 9 months struggle with postpartum depression and anxiety, I have begun testing every day…how is my stress level?  How is my mood?  How is my response to the girls?  How am I feeling?  How am I reacting?
I recently finished an intense treatment for the depression called transcranial magnetic stimulation or TMS.  I am doing much, much better.  I can not even tell you how much improvement there is over 3 weeks ago, but for now, I test myself every day, many times a day…but I am trusting that one day soon, I will no longer test every day…

 

Healthy Happenings–Multitude Monday

Here we are at a third week of recounting that which I am thankful. 

As I have mentioned in other posts, I have a history of MS.  I just realized the other day that I was diagnosed 20 years ago.  I was 15.  It’s likely I was sick with it before then.  It looked like MS was going to win over my desires as it was often flaring and making me sick.

In 1994/1995 I started Beta Seron, the first medication to treat MS.  It was/is not a cure, but it was shown to lessen the number and severity of exacerbation.  Doing those shots was no fun, but things did seem to get more stable.

By 2000, I had tried another medication, Avonex.  That one also worked some.  Neither was fun.  Giving yourself shots never gets routine, if you ask me.  I started needing high doses of steroids.  I was in the hospital 15 times over the next three years.  Twice my balance and walking got so bad I needed rehab to learn how to walk again,  Both times I went home in a wheel chair, the second time they told me they didn’t know when I would walk again.

But the Lord had plans for me.  He used the medicine of the doctors and work of the therapists to restore my body.  And I found a specialist who helped manage the MS.  I would do steroid bursts in his office every 3 weeks, we didn’t wait for me to get sick and play catch up.  No more hospital stays.  The steroids made me sick and weren’t any fun, but they helped.

Then in July 2005 I had my last steroid burst.  My body went into a spontaneous remission.  Then we started our family.  I have been pregnant or nursing a baby since November 2005.  And for me, pregnancy and nursing have been very healing.  Thank you Lord Jesus for using my babies to heal me.  I have needed no medication since July 2005 and my doctor has gone from being cautiously supportive of me staying off meds and having kids, to being 100% supportive and considering my course of MS mild!  Praise you Lord Jesus.

My history of walking/balance/strength issues makes every step walked or run a testimony of the Lord’s work.  Every step I push myself to run is a praise report.  Every time I spin my girls in a circle is a beautiful Amen.

And for this and many more things I am thankful.

13.  the desire to be healthy.

14.  the strength to run.

15.  doctors the Lord blesses with knowledge to help others.

16.  a daughter with 20/20 vision.

17.  my new treadmill so I can keep running in our cold Mitten.

What are you thankful for?  Head on over to A Holy Experience to see some breathtakingly beautiful photos and see why others are thankful.

Getting to Know YOU

These days are filled with busyness, joy and love.  And dirty diapers, feeding baby and holding baby.  And play-doh, cartoons and coloring.

When we were at the doctor earlier this week for Patrice’s check up, the doctor gave us that little sheet about baby’s development.  One of the things it said to do was get to know your baby.  And that is what we are doing.  Here is some of what we have learned:

Patrice likes to be held.  She doesn’t sleep much otherwise.  She likes the baby wearing wrap.
Patrice likes to eat, and eat and eat and eat.  We’ve never had a baby who liked to eat at this young of an age.  Our older two slept most of their first weeks, getting them to eat was a challenge with a capital C!

Patrice gains weight.  At 6 days old she was within one ounce of her birth weight.  Sue was still losing at that age, Caitlyn was just starting to think about gaining.  At 10 days old, Patrice was 7 ounces over her birth weight.  I am amazed.  She is doing so well, we do not have to go back to the doctor until she is 2 months old.  Both the doctor and I commented how we have never been set loose this early.  We have always been in every week or so until about 3 months old to check weight gain, particularly with Sue.

What I have learned about myself:

I can handle 3 kids, and enjoy it, a lot!!!!!!  Today is the first day I thought I might go crazy but that feeling has passed.  Thank you Mr. Play-doh, Mr. Sidewalk Chalk and Mr. Coloring Books.  You are providing much needed distraction for the older kids.

I feel very accomplished for doing cloth diapers with Patrice.  Does it make me a better mom?  No way.  Is it something I thought about doing with Caitlyn and Sue, but wimped out on, yes.  But thanks to a dear friend I feel less clueless this time and have a great set of supplies.  The earth and my wallet thank her.
I love my littlest girls’ name more and more every day, especially her middle name.  Thank you honey for indulging me in naming her after our midwife.  Actually, I adore the names of all my girls, and each of them, their middle name, holds extra significance.  Caitlyn is the combination of names from three special ladies from my high school years that were great encouragement to me in my Christian walk.  Sue is my mom’s name (and my middle name).  And then there is Patrice. 
Now, maybe most would not think to name their daughter after their midwife, but my midwife has given me a great deal.  She gave me the opportunity to learn my body could handle and do a lot.  With my history of MS, I got told a lot I could not do this or that, enter any number of things, but when I first approached my midwife, who I found through an internet search, she saw me as a person and simply acknowledged the MS existed, giving it no more importance than it needed.  She helped even my neurologist see it did not have to hold me back. She has encouraged me along the  way when I struggled with some postpartum depression with my oldest, and when Sue was not gaining weight she helped me brainstorm ideas on how to help our little one.  She has answered so many e-mails, too many to count really.  She also helped us find solutions for Patrice’s breech position, never giving up and saying we would have to have a c-section. And she invests herself in the mom’s who are privileged to know her.  She has, in short, become a friend. And that does not even begin to touch her role in our birth story (which I am almost done getting written).
I know there is much more to learn about Patrice and about ourselves as we do the family dance, but there are some glimpses in our first 12 days.

Insomnia, oh no, not quite

Over the years I have had bouts of insomnia for many reasons…when the Multiple Sclerosis was at it’s worst I was in the hospital 15 times in three years for steroid IVs.  That will cause major insomnia.  Then I found a doctor that would do the IVs outpatient, so it was two more years of them going to the clinic, much better than the hospital, but still causes insomnia.  Then there are random bouts everyone gets.  And my favorites, seriously, are the ones caused by pregnancy.  Insomnia is actually my first clue I might be preggo.  This time around my husband even noticed and when I told him our family was growing, he said “what made you test, the insomnia?”  It is worst during first and third trimester, but that’s okay.  It is totally worth it.

But today I have been up since 4.  Insomnia, nope.  My girls are sick again.  This time with horrible colds.  And I woke up to Sue coughing.  And the poor thing is so confused.  Think about it.  The gagging of throwing up can be an awful lot like a cough and she just stopped that about a week ago.  So now, when she coughs from her cold, she cries for her “bowl” that she lived with while battling her stomach virus.  It is sad, and cute.

But being up with her, while miserable, is still nicer than the insomnia from the MS treatments.  That was horrible.  I would be sooo tired and then all the sudden I was awake.  The steroids would have me all revved up.  And your mind, after a few days of steroids, is not quite “normal”.  I found with those meds, I obsessed more.  Something would start to bug me that unmedicated I could brush off, but with 3 days of 1000 mgs per day steroids, and that little thing became huge.  It would make me so angry.  Or sad.  Or sometimes, when I was lucky, maybe something would strike me as funny and I could not stop giggling about it.  (That did not happen often!)

And yet, I would do all those steroids again.  It was better than the options when I first got sick.  I was originally tentatively diagnosed at age 15, though it was 4 years more before someone would say it officially (ask any MSer, that is normal and frustrating).  But in the beginning, it didn’t really matter if they officially diagnosed me or not, because there was really nothing they could do.  I remember that first neurologist, looking at me, and saying, “there is nothing I can do for you. I hate teenage MS because I can’t do anything.”  Gee thanks lady. 

She kept her promise, she didn’t do much.

It was a little better when I went away to college, a few years had passed and new meds were coming out.  The first preventive medication was Betaseron interferon 1b. It was, and still is, an injection you did yourself every other day.  It’s goal was not to treat the symptoms but to decrease chances of flares, which are times the MS gets worse and there is more potential for permanent damage. 

It did decrease my flairs some, but not to nothing.  But it was something, it was something I could proactively do. I could give myself the flu every other night.  Okay, not really, but that is what the side effects felt like for about the first month. 

And I continued on Betaseron for almost 5 years.  And it helped to varying degrees. 

Now, when someone is diagnosed, there are not only medications, there are several, 5 main ones for prevention of flares and, hopefully, disability.

I am thrilled to not currently need any treatment.  Pregnancy is often a great treatment for MS, 90+% of women go into a remission while pregnant.  Nursing the baby often prolongs that in women.  (I think I will nurse my last baby for 20 years or so, that will work, right?)

And many of the above options were helped along by the National MS Society, either because of awareness they raised, funding they provided or support they give/gave to patients walking the MS road.  And for that I am very grateful, so as I have said, I give at least an annual nod to the MS by participating in the MS walk in May.  This year it is May 2nd.  I am thrilled beyond words to be walking it with my beautiful family.  The family I thought I would never have because of the MS.  We will walk to let the MS know it can not keep us from moving forward.

If you would like to be involved by supporting me financially in the walk, please see my link at the bottom of my blog. It will take you to my personal page.  I would greatly appreciate it, as would the other 16,000 people living in my state alone who have MS.  We need you to help us keep walking.

Here is a picture of Caitlyn from the walk 2 years ago.