Lessons Learned

We made it through our initial three months on the Auto Immune Protocol diet and then hit the holidays which threw us for a few loops.  We are now on the upswing again and have made a few discoveries along the way.  

Jack, we've learned, is sensitive to nightshades.  I had to be told what those were when we first started this journey.  They are plants that produce an alkaloid compound called solanine. The most common of them are: Tomatoes, potatoes, peppers and eggplant.  I thought avoiding gluten and dairy was rough, but those are a walk in the park compared to nightshades.  Anything labeled with "spices" as an ingredient has to be avoided.  It's rough, but it's worth it.

We traveled over Christmas break and were unable to control most of our meals.  Jack's eczema was awful - back to where he had been before we made any changes. We hadn't noticed how much more pleasant he had become until he was back on the nightshades.  He was grumpy, sensitive to touch and of course, very broken out.   We've been home a few weeks now and he's healing quickly.  

Slowly healing from the inside out.

January 2015 - Down a familiar path - Alopecia isn't fun.
Hair loss from vacation.  When we returned to our strict diet
it began to grow in.  But it always comes back without pigment
and takes a while to show color.

Mak also did not fair well over vacation.  The rest and relaxation did wonders for his adrenals and complextion, but his hair fell out in clumps - to the point where he wanted to shave his head again. We've been learning A LOT about his conditions and pieces of the puzzle are beginning to fall into place and make sense.   He's had Alopecia for years, but it was mostly inactive.  Then he started to have issues with his adrenals and everything went haywire.

Here's the best we can understand.
Event # 1 - January 2012, a broken arm that needed surgery.  With the hindsight we now have we know that anesthesia isn't his friend, and doesn't leave his body easily.  He seemed to recover, but never told us he was always tired.  His personality is to push things to the limit so he did.

January 2012

Event # 2 - Not actually an event, just life.  Working hard at the green house, pushing himself in a P.E. class and being a boy who wanted some muscles, he worked out a lot.  I began to find him sleeping in random places, often.  He started confessing he was tired, and we started to be concerned. We took him to have blood work and everything came back normal.

2013

Event # 3 - February 2014.  A Snowboarding accident that had him in for another round of surgery. This is when things started to really spiral out of control.  The fatigue worsened, he was sick at least twice a month for the rest of the school year. In bed, unable to function for 3-4 days kind of sick.  In the summer he tried to work but struggled to even get out of bed.

We began to see doctors - making numerous trips to Cleveland Clinic.  Since his hair was falling out to the point of needing to be shaved we started with a few trips to the dermatologists.  One of them recommended doing some blood work and noted his iron was low.  This sent us on another search - to find the source of the low iron.
Again, hindsight is so much clearer, and much of this makes sense - but then we were very confused. We now know that low iron can also stress your adrenals.  Though we still don't know the why behind the low ferritin levels.

We visited doctor after doctor, after doctor: Hematologist, Rheumatologist, Endocrinologist, and several Dermatologists. They all told us he was fine, that all his blood work was normal, even though he fell asleep on one of their tables.  

Besides some low ferritin levels (the body's storehouse of iron), no one had anything to offer us. 

Even though this has been a rough few years, we are very aware of God's grace and sufficiency.  We still know how to laugh, and and rest in the peace of knowing our God is in control.  There truly is joy in that.   

I believe the Lord led us to a nutritionist who did a saliva test and determined that Mak was suffering from Adrenal Fatigue.  It is a condition not readily recognized by the medical community so I was not sure how to proceed.  However, he was the only one to offer us any sort of help or hope, so we went with it.

A few months later someone suggested I read a book entitled Adrenal Fatigue By Dr. James Wilson. As I read that book, it was as if he was describing our son.

This paragraph brought so much to light:
Hypoadrenia means Addison’s disease to most doctors. Therefore the only tests they run to detect hypoadrenia are the tests for Addison’s disease. This puts you in a “no-win” situation. If you present your symptoms to your doctor, he may think your symptoms do not justify running the tests since they are not severe enough to signify Addison’s disease. If your doctor does run the lab tests, you probably will not test positive for Addison’s disease and so you will be pronounced “healthy” and dismissed. If you suggest an alternative test, such as a saliva test for hormone levels that could pick up signs of non-Addison’s hypoadrenia, chances are your doctor has never heard of hormone saliva tests. If he has, he may not know that they are as accurate and valid as blood tests, but more sensitive, or that they have been verified and written up in scientific papers and are accepted by many insurance plans. He will probably dismiss the test’s usefulness even though it is a very valuable diagnostic tool for adrenal fatigue. Either way you lose. Unless you have an exceptional doctor, you may come away discouraged, doubting your own symptoms, humiliated for having taken any initiative concerning your health, and possibly with a prescription for tranquilizers or an appointment with a psychiatrist.

I was so encouraged.  We began implementing some of his suggestions and started to see even more improvement in Mak's energy level. 

We have since learned that low functioning adrenals are a known trigger for Alopecia.  So we have two things to battle, and know that the Alopecia won't have a fighting chance until the Adrenals are functioning properly. His strength is increasing, he's not getting sick nearly as often and he is able to think more clearly.  The recovery is said to take about a year, we're not quite half-way there, but we've learned so much.  Not we just need to persevere.

We are continuing with the elimination diet because it does make a noticeable difference as well.  His thinking his clearer and his hair falls out far less.  Still trying to discern what food might be a trigger for him.

2 Corinthians 1:3-4 

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

Through this all we have been comforted by the Father of mercies.  Each day is a blessing, and though I don't always know how I'm going to make it through a day, His grace proves sufficient.   In the last two weeks I've been given the opportunity to comfort others with the comfort I have received. Others who are just now being presented with a diagnosis of M.S., Adrenal Fatigue or Alopecia.  

UPDATE - We learned this week that eggs cause Mak's hair to fall out in clumps! Though it was sad because he loves them, my heart rejoiced to have another piece of the puzzle.  I've had several months practice of cooking without them.  Breakfast is a challenge - eggs, milk and gluten free...but it's a small price to pay for hair.  

Thoughts on an uncompromising life

I believe I have a very unusual bucket list.  I recently started crossing something off mine, but it will take a while.  For many years I've wanted to devour the book of Daniel and study it in depth.  For various reasons that has been unrealistic, five kids and a busy life might be the normal excuse, but for me it's that I teach a Sunday School class that allows me to dig deep on a regular basis but my brain can't handle two such studies at once. Maybe I'm getting old, or maybe it's just how I think, but I like to meditate/dwell on a book of the Bible, and just one book.

I decided over my summer break to take the leap and begin this book with my students, a group of young ladies.  We are three weeks into the study and I got through verse 8!  I've been fascinated with this young man and the sovereign hand of God in His life.  

Daniel was about 15 years old when he and about 70 other royal boys were taken captive by Nebuchadnezzar, during the reign of Jehoiakim. It's a fairly familiar story, however there are things that are not so obvious.  For instance, I never realized that Daniel was born about 18 years after Josiah, one of the few godly kings, began reigning in Jerusalem.  Daniel's parents were part of the revival and the finding of the lost scrolls.  Could that be why he was named "God is my Judge"?  For certain it is a reason he knew his Scriptures and was committed to them.

The boldness of Daniel as he refused to compromise where God's Word was clear is a challenge to me.  He didn't beat around the bush or make excuses.  He simply told the ruler that his food would defile him.  He was unwilling to step down but he was willing to accept whatever consequences there might be.

It seems to me that he must have had Psalm 37 memorized:

Do not fret because of evildoers,

Be not envious toward wrongdoers.

For they will wither quickly like the grass and fade like the green herb.

Trust in the LORD and do good;

Dwell in the the land and cultivate faithfulness.

Delight yourself in the LORD;

and He will give you the desires of your heart.

Commit yoru way to the LORD,

Trust also in Him, and He will do it.

He will bring forth your righteousness as the light,

and your judgment as the noonday. 

The Psalm goes on a while longer, but the point is simple, obey God and trust Him to take care of your enemies. Daniel had to have had the bigger picture in his mind than just that one meal, he had to be trusting God to keep His word.   Even more importantly he feared God rather than man.  That is my prayer, for myself and my family.  That we would be bold and uncompromising and fear God rather than men.

Along For The Ride

After spinal tap - August 2013

Bruising on my lower back from the
 lumbar puncture August 2013. 

Ever been put on a ride at an amusement park that you weren't ready for?  This past year has felt like that for our family, and we weren't exactly buckled in when it started. We began with a steady incline of little things that didn't seem too big, but then reality started to set in as we got closer to the top, and we knew we were in for some twists and turns.   Last August, after 11 years, I was finally diagnosed with M.S.  The diagnosis and disease have really caused me minimal issues.  However the battery of tests that allowed the diagnosis to be made are still haunting me.  Thirteen months after the last and most painful test I am still recovering.  A spinal tap, or lumbar puncture, was performed in August 2013.  I must have a very difficult spine to work with because they hit bone several times.  Then I went home and got the dreaded headache - a result of my spinal fluid leaking. I had to return to the ER for a "blood patch" where they re-enter your spine and plug up the hole.  Again, they hit bone.  The bruises you see were literally bone deep, and I'm still in pain after all these month.  Scar tissue has built up and I am still working on breaking it up and getting full mobility.  My days are fine, but this really does rob me of sleep - but what mother isn't always tired?  

His Alopecia at its worst. 

As I was dealing with my pain and lack of sleep, we began noticing issues with Mak, little clicks heading up to the top of the ride.  Swollen or hard lymph nodes on his scalp, finding him sleeping all over the place, sick almost every other week and bald spots popping up.  His Alopecia, which had basically been in remission for years, was rearing its head again. We started with the pediatrician with the typical tests, and EVERYTHING came back normal, but hey, let's try some antibiotics... 

February 2014 

After Surgery

Then in February he fell while snowboarding and broke his collar bone.  Surgery and five screws later, we endured that healing process.  

Even in the midst of that his other symptoms kept nagging at us.  There was nothing glaring, just a lot of little things, like each click of the roller coaster heading to that first drop.  

One of the many visits for injections
 July 2014 . 

The most obvious thing was the Alopecia, and we knew we needed to address it.  After seeing a local dermatologist she recommended we head downtown to Cleveland Clinic's main campus.  It was there that new bloodwork was drawn, and the first results sent us heading toward the real ride.  Low Ferritin levels - the storehouse of your iron.  We thought we had an explanation to the fatigue but wanted to get to the cause.  This is when all the twists and turns come, and you hang on tight.  In between our monthly dermatologist appointments we  saw a hematologist, rheumatologist, and an endocrinologist. All of them gave us the same blank stares.   So we decided to see a Nutritionist who took a look at the grand scheme and did a full history, plus a battery of test.  His conclusion was that Mak's adrenals were failing due to a parasite.  He's been put on a bunch of supplements and we are working on building up his immune system. 

As a mom, I want my kids to be healthy, so I've been on my own side journey of research.  I've put more knowledge into my head than I will ever be able to regurgitate but the main thing I have come a way with is that what we eat has a huge impact on our health.  
The nutritionist recommended a gluten and dairy free diet.  Right before we had visited him I had waded my way through a book on the science behind autoimmune and diet.  It also recommended no gluten or dairy, but went farther to eliminate a large list of foods for a three month period.  Mak was so desperate to get better he was willing to try anything.  So, we stepped off one ride and got on another.  

Jack's Eczema August 31, 2014 

Three in our family show signs of autoimmune. Mak with his Alopecia, myself with M.S and Jack with Eczema (not commonly understood as autoimmune). 
And here we are three weeks into a major change in the way we eat.  

After three weeks on a new diet -
no topical treatment at all

For Mak the results are slight, his thinking is clearer and his energy is slowly returning.  For me the results are more obscure - my skin has never been this soft.  No more constant chapped lips and cracking feet.  But for Jack the results are more visible.  He's had an outbreak on his leg since the summer of 2010, in three weeks the improvement is visible, it's not gone, but it's not nearly as large or red (the spots on the right are gone).  We are thankful for the visible on Jack to be encouraged that there is internal healing going on in us as well.  

It's a ride I would rather not have gotten on, but that was not my choice.  My choice though is to count it all joy when I fall into various trials, knowing that the testing of my faith produces patience.  I want to let patience have its perfect work so I may be perfect and complete, lacking nothing.  

M.S. August 2013

Mostly Smiles

Meaningful Security

Minimal Sorrows

Master’s  Sufficiency

Many Supplications

Merciful Sanctification

Mystery Solved

These are just a few of the ways M.S. is defined in my life.  Though its official term is Multiple Sclerosis that is not what it means for me. Please allow me to explain. 

Eleven years ago in August an odd thing happened to me.  As I was driving to church, I took a sip of coffee and noticed that the left half of my top lip felt numb.  I found that odd, but didn’t think much of it.  However the next day the numbness had spread a little farther up my face.  After a few days it had covered the whole left side of my body.  I was unable to walk without help, smell with my left nostril, taste with the left side of my tongue and my vision was double.  My husband was out of the country on a mission trip so I found someone to watch my three small children and drove myself to the Dr.  That was the beginning of a lot of tests, but the first stands out the most to me.  It was a defining moment in my life.  The Dr. told me that my symptoms seemed a lot like M.S. and she sent me to the lab.  As the cheery nurse who was taking my blood asked what I was there for I had to choke back tears and tell her I was being tested for M.S. a disease I knew almost nothing about.  As I got in the car to head home, the tears did come, but so did a resolve, as well as a verse from Job.  Chapter 1 vs 21 “Naked I came from my mother’s womb, and naked I will depart. The Lord gave and the Lord has taken away; may the name of the Lord be praised.” I spoke it out loud and meant it.  I would praise Him no matter what.  That brings such amazing security, to see how your heart responds in a trial, to be able to trust my Sovereign God completely even if He takes away my functionality. 

It was a very humbling time for me, having to rely on others to do simple tasks.  I have no trouble helping others, but letting them help me is hard.  To lie there and watch as someone folds your clothes and cleans your kitchen is not easy, but it is very educational.  During that time God gave me several verses to really cling to.

1 Peter 1:6-7  In all this (my eternal inheritance in heaven) you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. ⁷ These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed”.

2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 

1 Peter reminded me that trials are short lived, at least in light of eternity and that trials are given to prove my faith.  I was encouraged that by simply enduring through I was bringing the result of praise, glory and honor.  My faith was being strengthened.  2 Corinthians reminded me that when I am weak I give God far more credit because I realize I can’t do it alone.  It is a great relief to be able to boast in your own weakness – but it is a hard lesson to learn.

I continued on with a myriad of tests.  Every other Dr. was either baffled or not confident enough to diagnose me. In the midst of all the tests my feeling, vision, taste and smell were slowly returning.  My limp was the last to leave, but by January it was gone as well.   The last Dr. I saw said “I don’t know what’s wrong with you, but if it happens again come back.”

When I went home I wrestled with the temptation to worry about if whatever “it” was would come back.  To this day I have not experienced anything close to the severity of that attack.  I have had bumps along the way, minor episodes when my vision goes double, or an aching in my head returns, or extremely irritating and uncomfortable sensations occur on the left side of my body and occasional “fuzzy thinking”.  I have always been functional and taken those episodes as reminders of God’s amazing grace and that each day is a gift.

Every few years an episode would be a bit more than annoying and I would be prompted to go back through the gamete of tests again. But I got the same results “We don’t know what’s wrong with you.” Through those times there was a bit of frustration but not for the reasons you might expect.  You see, in all of this, from the outside I looked just fine.  No one could tell if I was doing well or not. So when an episode would hit, it was easier for me to just pretend all was well instead of go into a long explanation of what has happened and how I feel but don’t know what is wrong with me.  I was never frustrated by the symptoms themselves, because I have such a peace that God is in control of my life and will grant me the grace I need for each situation. 

Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Has proven true in my life.  When I am tempted to be anxious I turn to God and He grants peace that is beyond my ability to explain.  His sovereign Hand that is working all things together for my good and His glory is such a comforting thing to rest in. 

This year God brought a new couple to our church, and it was through them that He finally led me to a diagnosis.  I had an episode in April and began speaking with my new friend.  As I explained my symptoms she nodded her head in understanding and would finish my descriptions of certain things. It was the first time I had ever had someone truly understand as I explained how I was feeling.  She insisted I go see her Dr.  Honestly, I didn’t want to, more tests and a dead end weren’t my idea of the best way to spend my summer.  But there was this prompting on my heart to go, so I did. 

This Doctor was more thorough than any I have ever seen before and he was determined to figure it all out. So back to the lab, the ophthalmologist, the main campus of Cleveland Clinic for more tests than I’ve ever had before, and the results are in – after all this time, I finally have a name for what randomly interrupts my life: Multiple Sclerosis.  But you know what? It really doesn’t change anything, except it is much easier for me to explain to people why certain things at certain times are hard for me.  It doesn’t change my outlook on life because my God, who is my source of strength, is still the same.  His grace doesn’t change based on a label I may have, and my faith won’t change based on an ability I lose. In some ways it excites me, because I get to see how He will use this for His glory.  I know He has a reason for it all.  He is the God of all comfort and as He has comforted me, I can comfort others. 

2 Corinthians 1:3-4 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, ⁴ who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

I can’t say that this has all been easy, but I can say that God hasn’t yet given me more than I can handle, and through it all He has made me stronger, more content and joyful.  I think my favorite meaning for M.S. in my life is: Master’s Servant – that’s what I want to define me. 

Random Stuff

These are just some random shots.

Ok here is the story to this one. The kids have discovered hot cocoa recently and decided they like it for their snack. I turned to look at Mak during school and had to laugh. As you can see most of the drink didn't make it into his mouth. I sent him to wash his face, but all the kids insisted I take a picture first.

Kayte was so tired the other night she didn't wake up when we brought her in from the car..she stayed sleeping through a diaper change and being put into bed. This is so cool. TJ was talking with his teacher online. She was doing a math lesson with him.

Jack's dinner plate tipped over the other night at Opa and Oma's house. His food all all down the front of him. David decided a picture was more important than cleaning him up right away.

The video is silly. It's just Jack and Kayte jumping up and down on a chair excited to see snow. Kayte loves to move the chair and look out the front door.

Another thing that has been difficult to catch on video is how much Kayte reminds us of a blond version of Boo from "Monsters Inc." especially when she runs.

Christmas at a glance

A few of our Christmas pictures

Our California Trip

I have way too many pictures to sort through before I am able to post about our actual trip to California for Christmas, but I have a nice story of our adventures of going to and from.

Let me start out with the fact that we were truly blessed to be able to go out, and with so many people whose flights were cancelled during the Christmas season we are thankful we made it at all.

Our adventure began with packing - which took several days. I felt quite prepared as we arrived the proper 2 hours early for our flight. We zoomed through check in and security, sat down only to hear this:

"Our plane is here, our Pilot is here, but our flight crew is stuck in Newark. We are doing our best to get another flight crew"

Long story short, we were supposed to arrive at LAX at 8:15 pm, but got in at 11:45 (which was 2:45 am to our bodies). We got all our luggage - they had plenty of time to get that on the plane - lugged it to the car rental shuttle stop and waited. And waited. And waited. We saw every shuttle bus but the one we needed. After a few phone calls we learned that the company we had chosen closes at 11:00, but another one would honor our order. So we piled all our bags onto the next bus and rode on over. There we were told they didn't have a vehicle to fit our family. Since it was 1:30 we decided on a hotel. Some man who felt sorry for us gave us a ride to the hotel.

All through this whole ordeal there was not one complaint from our kids.

Though TJ did ask what else could go wrong :).

The next day we finally got our rental van and began the 5 hour drive to Bubba and Nana's.

We had to stop at In-N-Out Burger,

because we are deprived of it in Ohio,

and Kayte had her first taste.

About three hours later she puked it up.

On our drive up Highway 99 we always look for the "Pine and the Palm".

David managed to snap this great picture of them.

This is the center -between the northern most point and the southern most point - of California. Two trees are planted side by side, a Pine Tree and a Palm Tree.

(If you're ever on that route it's just south of Madera).

I don't have a photo for how our trip ended. I only thought of taking a picture after it was all over. On our return drive south, we stopped at another In-N-Out Burger, and an hour later Chatham vomited it all over. Maybe we need to do some rethinking on our dining....

As a "gut reaction" to the sounds and smells, Kayte also threw up. It was quite a mess!!!!

Through all of this we kept thinking of things to be thankful for.

For one uncle Cameron had some plastic bags in his car.

Also we weren't heading to the airport, but to Aunt Kayce's where there was a washing machine!

THANK YOU UNCLE CAMERON AND AUNT KAYCE!!!!!

Sinter Klaas Day

The van Wingerden family started a "new" tradition a few years back. It's actually an old Dutch Tradition, and we all love it. We don't celebrate on the actual Dutch Sinter Klaas Day - we celebrate when we can organize all vW's schedules to get together. This year it was Dec. 13th.

We started with a simple but family favorite meal: Pizza from Lorenzos! (sounds totally Christmasy doesn't it?).

Then we gathered around the fireplace and Opa read the true Christmas story from Luke 2.

Then all the grand kids found their wooden clogs lined up by the fireplace, and posed for the obligatory picture. Kayte, Jack, Gracie and Blake are on top. Hailey, Todd, Chatham, Hannah - holding Abby, Mak and T.J. Then Will in the very front (never too far from his Mommy)

Chatham read to us the opening of the riddles - each kids had a clue in their clogs, and the gifts were hidden around the house.

David read Kayte's Riddle - she wasn't too interested.Kayte loved her new travel bag and magnadoodle! Jack's riddle - of course all the older cousins help him to solve it.

TJ and his new Sudoku game - for the plane trip.Mak showing off his travel bag - did you notice they all got one? Plus something to put in it.
His riddle was my favorite:

No Doctorate, no Masters,

no Bachelors for me,

The reason I work,

I have Zero Degrees.

He found his 2nd clue in the the freezer :)

Grandma has a stack of gifts for each of the kids too - a little activity or book to put in their travel bags.


And to finish off the night we have our traditional snowman cake - which doubles as a birthday cake for Oma.

Christmas Party!

Yesterday we have our "school" Christmas party - actually we just invited a family, who invited another family, over. We made cookies, ate pizza, decorated cookies, read books, ate cookies and listened to Christmas music.

This is "Miss Wendy" (I met her that morning) with Carson and Chatham.

Roll out the dough! We had 9 kids in all. Look carefully to see Jack. He has become a very timid child, and it took him until the cookies were baked and half decorated before he could come into the kitchen - and that was holding my hand. He did come around though and realized how much fun it was.

Carson again!

TJ and Jack

(who has taken to winking for almost all occasions - it gets him out of saying "thank you")

Kayte (who was very upset for some reason at that moment), Carson, Mak and Will. Mak really is tall, but he is also several years older than William.

Will, Macie, Maddie and Chatham.

When I tried a group picture we couldn't see the cookies :) So I broke them up into little groups.