Our Christmas Card Video. Merry Christmas all!!

4th HINT observation & MS support group

Almost there!  One more trial and then I get worms!  Give me an internet *five*!  Anyway, I'm happy to report that today's MRI appointment was uneventful and only took 2 hours.  My shortest appointment yet.  The needle went in like knife to butter without a hitch too.  The only hiccup was I had to pee during the MRI so bad my eyes were turning yellow.  Yes, I went before they put me in the machine and yes, I took my meds that morning.  It didn't matter.  So after they put the contrast in they let me out to got to the bathroom.  Then, we finished the rest of the MRI.
After picking the kids up from Jenny's and feeding them supper, I went to my first MS support group meeting called "Circle of Hope" that meets once a month.  It was a small group, but everyone was very friendly and welcoming.  Confidentiality is very important so I won't go into detail about the group.  I will say, I ended up feeling like the guess speak for the evening.  I was new, so they wanted to get to know me which meant they asked and I answered their questions.  I got to talk about the HINT trial which, as most of you know, I love talking about.  And of course interpreting and homschooling came up too.  It was more uplifting than I thought it would be.  I was scared that if I met people who suffer severely with MS it would freak me out.  But, everyone was so ...normal.  It was comforting to be around people who understand what I'm going through.  I will try and make it back there next month.

Our simple Christmas

Christmas for us this year will be even more simple than last year.  Yes, we still have the same 4 foot fake tree my mother-in-law gave us years ago.  Bless you MomB, it has served us well!  We have the same old decorations and some new ones the kids made.  The kids are buying each other one gift from money they earned.  They got a few gifts from my side during Thanksgiving because we don't travel for Christmas.  Yes, it boils down to the lack of money but, it has given us an unexpected gift...peace.   Our house is tranquil.  At least where Christmas is concerned.  We make treats that we will give to the postal worker, neighbors, and the few family members that live by us.  And, of course, we will be decorating our gingerbread house.
I've read a lot of Facebook post over the past few weeks about Christmas.  People posting about the rush to buy gifts, finding great deals, getting ready for visiting family, posting pictures of their decorated trees, and the true meaning of Christmas - Jesus.  I love it all.  Some of it is very entertaining while others are insightful.  But all of it has made me thankful for our very simple Christmas.
We don't travel, there is no big meal, or relatives to worry about.  We don't do Santa Claus and our kids don't feel deprived either.  We won't get a credit card bill that will give us a heart attack, our energy bill will not be noticeably higher and we don't mail Christmas cards anymore.  We do a Christmas video/card that we send out electronically.  It has saved us a ton of money and is a lot of fun to make!.  We go to church on Christmas Eve without fear of persecution and the next morning we sleep in.  Christmas morning starts by reading the Bible and prayer, then the kids can open gifts.  We sometimes spend the majority of the day in our pajamas.  I may even turn the heat up to 70 as a special treat.  This kind of Christmas is more than most of the world will get to experience.  How in the world could I ever complain or be ungrateful.

Sam reciting the poem, "Learning to Read" by Frances Ellen Watkins Harper.  She memorized this in 6 days. She made a few mistakes, but still it was a long poem and I think she did pretty good!

Here are the words:
Very soon the Yankee teachers
   Came down and set up school;
But, oh! how the Rebs did hate it,—
   It was agin’ their rule.

Our masters always tried to hide
   Book learning from our eyes;
Knowledge didn't agree with slavery—
   ’Twould make us all too wise.

But some of us would try to steal
   A little from the book.
And put the words together,
   And learn by hook or crook.

I remember Uncle Caldwell,
   Who took pot liquor fat
And greased the pages of his book,
   And hid it in his hat.

And had his master ever seen
   The leaves upon his head,
He’d have thought them greasy papers,
   But nothing to be read.

And there was Mr. Turner’s Ben,
   Who heard the children spell,
And picked the words right up by heart,
   And learned to read ’em well.

Well, the Northern folks kept sending
   The Yankee teachers down;
And they stood right up and helped us,
   Though Rebs did sneer and frown.

And I longed to read my Bible,
   For precious words it said;
But when I begun to learn it,
   Folks just shook their heads,

And said there is no use trying,
   Oh! Chloe, you’re too late;
But as I was rising sixty,
   I had no time to wait.

So I got a pair of glasses,
   And straight to work I went,
And never stopped till I could read
   The hymns and Testament.

Then I got a little cabin
   A place to call my own—
And I felt independent
   As the queen upon her throne.

New tax for us. And it won't even help solve the problem.

Gazette spin:  "The city of ------- was able to keep taxes low by implementing a $10 wheel tax."
No, the douches just added a another tax instead of using act 10 to save us money.  They kowtowed to the unions and now the unions won't budge on anything.  They didn't shop for better benefit packages, or requiring teachers to pay a very minor amount toward their own benefits and pensions.  No no no, they rushed contracts through knowing the new budget bill was looming.  Real stellar group we got there.
Governor Walker is not to blame here.  This is purely the city's doing.  Other cities are prospering because they implemented Act 10 savings.  But oh no, my family has to live in one of only 3 cities that didn't.  All 3 cities are struggling big time!  We have a $8-$10 million budget deficit and this is how they plan to fix it, just add another tax.  And this tax will only generate about $2 million.  So it won't even freakin' fix the deficit problem!  And they wonder why this town if failing!  This new tax will just be another way for them to waste our hard earned money.

Trip to UW Children's Hospital

Yesterday Zach had an appointment at the American Family Children Hospital in Madison (nothing serious, just needed a specialist for a minor issue.  Zach asked that I not blog about it).  It is apart of the UW hospital where I go for my MS appointments.  That place is the most confusing hospital EVER!  You have to take a separate elevator for the parking garage and then there are different elevators for different floors for the actual hospital.  2nd floor in one area doesn't mean you will be on the second floor of the children's area!  AAAHHH!  Who is the sadistic architect for this maze?!
Anyway, my friend Sarah Worthing was kind enough to drive us to the hospital since I was feeling dizzy and my right hand was weak.  I was a little concerned about driving so far while having these symptoms.  Thank God she did drive.  My dizziness increased the minute I stepped into the elevator.  I stumbled a few times but nothing serious until we got to the check-in desk.  That is when it felt like the world was spinning at super speed! Down I went.  I laid there and chuckled while everyone else is gasping and asking if I'm alright.  I explained why I fell, that I was alright and just really embarrassed.  Sarah said my ears were red.  I asked for a wheelchair because I really didn't want to fall on my ass again.  They got me the kind that you can't wheel yourself.  It only had little wheels that lock instantly after the person behind you stops holding in the bar as they were pushing.  Kind of like the safety bar on a lawn mower that will shut off the machine if you let go.  So that meant I had to rely on everyone else to push me where I wanted to go.  Zach took the initiative and wheeled me everywhere.  My feet were not exactly safe from walls and he took that as an opportunity to treat me like a race car.  I'm in a wheel chair;  my hair shouldn't be flowing behind me like I'm in a convertible.
I called Namita in the research lab, because I couldn't find Dr. Fleming's phone number, and told her about my Thanksgiving event and the dizziness I was having.  She got a hold of him and we set up an appointment for tomorrow, Wednesday.  I'm better now.  Dizziness is gone and I've got my strength back, but I'm going to have Joe Scarpelli drive me anyway.  Just in case.
Dr. Fleming called me last night to check on me, what a great guy!  I told him what happened and he explained that as a newbie MS patient it's normal to have a big episode like I did at Thanksgiving, then recover and have "after shocks" for a few days.  And like earth quake after-shocks they are not as violent as the first big event.  They slowly diminish as the days pass.  So far today I only have tingles in my fingers if I look down with my head.  After awhile, if not treated, those MS attacks can cause permanent damage and you can't recover anymore.  I can't wait for my HINT treatments!

MS is a weight loss killer!

Since being diagnosed I've gained a few pounds.  It's uncomfortable and I'm done with it.  At least I want to be done with it.  I've started South Beach again but unlike last time it's taking longer to work.  Add to the fact that exercise this time around has to be light.  No inhaler allowed.  Crunch Yoga it is. It's a combo of yoga and pilates.  It makes me sweat but not breath too hard.  Oh, but things have gotten even more interesting after my latest ER run when all my extremities went limp.  Now, I have the tingles shooting down my arms every time I stretch them forward.  The stretching feels good when I'm all done with the routine, but during it is very off putting.  I'm going to work through it for now.  Unless my doctor tells me to stop.
The other issue that is preventing me from exercising lately is Samantha has been sleeping in the living room.  The kids share the same room but sleeping in the same room has not been going well, especially if Samantha is sick.  Which right now she is starting to get over.  She snores and it's driving Zach crazy.  So she sleeps in the living room.  Where is the only place I can exercise?  THE LIVING ROOM!  I have no place to escape to.  I can't afford a gym membership either.  Rock.  Hard place.  Me.

It's wouldn't be the Holidays without an ER run.

Matt dragged me to the Wausau emergency room yesterday which is out of our insurance network.  Yes, I spent a large part of my Thanksgiving in the ER.  I didn't want to go, but when all of my limbs were so weak I could barely stand, or hold a cup I finally gave in.  It happened so suddenly and all over my body.  It started with my right leg first and spread all the way up my leg to my right arm then my left leg to part of my left hand.  My limbs felt weak, cold and heavy.  I even had a hard time signing my name (I'm left handed) when we were checking in.  They did the normal myriad of tests including a CAT scan.  I did have a headache too in my right temple.  After about 3 hours all the test came back clean.  My cat scan didn't show a stroke or blood clots.  I was a little nauseous and they wanted to give me medicine for it but I refused.  I was pretty sure it was just because I was hungry and I didn't want it to mess with the HINT trial I am in.  By the time we were ready to leave, my headache had gone from a 6 to a 1 on the pain scale and my legs were back to normal.  I still had issues with my right thumb and index finger but it was nothing compared to how it was earlier.  I was wheeled into the ER and I walked out of there with a spring in my step!
After talking with doctors we came to the conclusion that this episode was brought on by caffeine.  It was the only thing out of the ordinary that I had done.  I  had a coffee and pain medicine with caffeine in it that morning.  I thought I had read the ingredients and I didn't see caffeine on the package.  Later, Matt found the continued section of the ingredient list where it was listed.  Oops!  I normally don't drink anything with caffeine and that morning I had giving my body a double dose of it.  No wonder my system was freaking out!  I'm fine now.  All the weakness and tingling have disappeared.
I PRAISE GOD with my boldest of text for His loving healing and care.  I certainly got a scary hint of my possible future, but I also got to see how loving my husband is during a hard trial!  He was my rock.  I'm thankful to the Lord for giving him to me.  When I was in doubt about going to the ER, he was and is unapologetically sure it was the right decision.  He kept me entertained while waiting for test and never complained about having to sit there.
Now I'm off to talk to the insurance people.  Pray we don't pay an arm and a leg for this little ER visit.

My first MS symptoms in my appendages.

Yesterday my right calf leg muscle felt like it was...I don't know how to explain it.  It was kinda tingly but it also felt stiff.  It didn't feel weak though.  This morning my leg was back to normal, but my right hand and half of my left now is tingling.  It feels like it does when your hand starts to fall asleep. It is weaker than normal and it's making typing well, interesting. I really hope it goes away soon.

Blown veins and contrast on my clothes...good times.

Had my 2nd MS HINT observation today.  Only 3 more to go before the actual trials.  I always have to have blood drawn for these observations.  Until now it has been fine, but not this time.  They decided to just have my blood drawn in the Research Lab.  That is were things went wrong.
Instead of doing the individual tubes the lab nurse decides to just draw out my blood with one big tube and then separate it in individual tubes.  This means she has to draw the blood out instead of letting it flow naturally.  Plus, she used my left arm which is usually not the best.  I prefer my my right for all needle excursions.  I started to get very nauseous and dizzy.  The needle was also right on a nerve so it hurt A LOT.  I stuck it out as long as I could until I just started to pass out.  She stopped drawing the blood, had me lay down and drink Juicy Juice.  We were done drawing blood for that day.  They said I looked pretty pale.  I mean more pale than usual.  They decided to switch arms for the catheter.  She got it in and then it wouldn't work.  So she had to take it out to see what was wrong.  It was bent.  That was vein number 2 that was now useless.  She tried again on a new vein and started to put in the saline (to flush out the vein) when my arm started to feel like it was on fire.  My eyes started watering and I told her to stop.  She knew she had blown my vein.  That was the 3rd useless vein and my first blown vein.  She took her gloves off, put her hand in the air and said "we are calling a pro. to come in."
He had to come from the hospital lab so it took awhile but when he got there he found a viable vein in my right arm and got that catheter in in no time.  He put gauze over the needle tapped it on and I was off to the MRI.  Now they do the first round of test without the contrast.  I just lay in there with the tube connected to the needle in my arm.  As usual, I fell asleep.  I woke up when she announced they were putting in the contrast.  I've done this many times before and it's normal to feel the cool liquid flow up the tube and into my arm.  This time however, I felt it flow up the tube but my side started to feel wet.  I squeezed the emergency ball and told her I felt wet and suspected the catheter fell out.  She was flabbergasted and shut the machine off to come investigate.  She pulled me out, looked under the covers and felt my wet clothes.  The best part was when she lifted the catheter and it started spraying contrast all over the place!  Mainly on me, the machine, and the floor.  We later came to the conclusion that the reason the catheter didn't stay in place was because of the gauze.  Normally they tape the needled right to my arm.  Nice tight seal.  This guy had a different approach.  One that doesn't work well when liquid is being pushed in. That was vein number 4.
A new nurse came in and asked if I wanted to still try and do the rest of the MRI ( I only had 3 more test to go).  I was game.  She looked at my right arm and said that one was spent.  She was going for the left.  She gets the needle in and starts putting in the contrast.  It felt like someone lit my arm on fire.  I told them to stop.  That was vein number 5 and the 2nd vein that was blown.  They were done trying.  The rest of the MRI was canceled.  It wasn't a complete wash though.  The images they got without the contrast can still be used.
The ladies in the research lab must have apologized a hundred times.  I told them I was going to take pictures of my bruised arms and bring them the next time I come for my MRI.  And because teasing doesn't translate well in print I will clarify that I was joking with them.  We did have a good laugh about the catheter debacle.  I'm glad I'm in this study.  The people at the UW research lab are really down to earth wonderful people.  I'm not just doing this research for me but for them.  They want to cure MS as much as I want it to be cured.  And I'm glad we all could have a good sense of humor about days like this.

Oven update

Went to the store and picked out an oven $541 after taxes and warranty  Came home and Debbie had her handy man, Jim, over who took my old washer and dryer away.  YAY!  Anyway, I told him about the new oven I just bought and why. So he takes a look at it and says, "you can fix that with a new broiler coil for around $50."  WHAT?!  So I look it up online and there it is for $51.  Duh, should have done that in the first place.  Already canceled the new oven.  Thank you God for placing Jim in my path before I paid for a new oven when I didn't need too.

Catastrophes need to be done now!

Last night our oven went out.  It didn't go out with a whimper either.  It went out with a strange buzzing sound, sparks and smoke.  I was preheating the oven for supper when I heard what sounded like a bug zapper and saw smoke coming from the oven vent.  I open the oven to be assaulted with flying sparks from the upper coil.  I quickly shut the door and turned the oven off.  The stove top was dangerously hot too.  After we let it cool we opened it up to see what happened.  The top coil was melted and an entire section completely broke off.  So now we have to buy a new oven.  Another expense we can barely afford.  I feel we are under attack!  I've been so stressed out over finances lately.  The kids have already been warned that there will only be one Christmas present for each kid this year.  And if things keep going this way we may have to just make some presents instead.  I have been looking for a part-time job that will allow me to continue home schooling.  Pray I find something or that the Lord will grand us a miracle.  I am so blessed to have helpful family and friends.  Kiki is letting us use her oven til we get a new one and Debbie offered her's too.  Gotta count the blessing as they come!

The pumpkin

Matt's beater of a car finally died.  On the interstate no less. Of course we had to tow it back to town because it really was in the middle of nowhere.  I just about died at the tow charge.  Then came getting it fixed.  That was a total waste of time and money.  I should have gone with my gut and told them to trash it.  But instead we decided to try and bring it back to life.  This was no Frankenstein's monster; it was NOT coming alive ever again!  Mind you, this also happened right after my little trip down the stairs.  After realizing we no longer had a car and Matt needed one for work by Monday we set off on our search for a reliable car.  Debbie was nice enough to take me around and look at cars while Matt was at work (using the van of course).  We narrowed the choices down so the next day Matt just had to compare, select, compromise on price, and purchase.  Part of the deal was them "buying" our old car.  All this meant was we didn't have to pay to have it towed away.  Now we have a nice 2006 Kia Rio and a car payment again.  "Yay" for the car, "boo" for the new monthly bill.  I'm sure you are wondering at this point why in the world this blog is titled The Pumpkin.  This is why:

Zach wants to paint a jack-o-lantern face on it for Halloween!

The inevitable fall down the stairs

Well it finally happened, I fell down the stairs.  Tripped on the stupid dog's tail and down I went.  She just always has to be right by my feet when I'm trying to go up or down.  Thankfully, I was already holding onto the railing so I managed to fall on my rear all the way down. I did wench my shoulder because of the death grip I had on the railing and slammed my elbow on the stairs. Frost was fine.  She got out of there fast to escape the mommy bouncing down the stairs.  After a short recovery I decided to keep my plans of cleaning out my shed with neighbor Debbie.  I knew if I laid down and "rested" I would end up stiff.  I did however, ask Keith to interpret for me for Sunday.  I was pretty sore the next day (Oct 9th) and the pain in my shoulder has yet to fully subside.  I even got a massage, courtesy of my good friend Prudence.  It was nice, but I think I might need to see a chiropractor.

Vitamin D and MS

While at my neurology appointment I asked Dr Fleming about vitamin D.  I've heard and read a lot of stories where MS people claim miraculous healing by taking D or D3.  He told me the trial study on D showed no improvements for MS patients.  I told him that many people say doctors will deny the heal benefits of vitamin D because they don't make any money off of it; you can just by it in the grocery store.  He laughed.  And then told me something shocking.  "We [UW Health] hold the patent on vitamin D.  If anyone wanted vitamin D to be the cure, IT'S ME!  I would have made millions!  So tell your friends that yes doctors are corrupt and greedy (said very tongue and cheek) but we could not make this work even if we fudged the numbers."  He said, for some people vitamin D seemed to make the MS worse, if it was too high.  He told me a regular amount of vitamin D is good and I shouldn't stop taking the supplement, but don't take too much or expect it to cure my MS.
I don't have an aversion to taking vitamins.  I take lots.  And perhaps vitamin D alone doesn't work but I do think  vitamin supplements can at least help and perhaps coupled along with others can do a lot of good.  In fact, I'm adding kelp to my supplement routine. I need to improve my diet and exercise in my daily life more too.  Heck, almost everyone in America needs to do that!  Hard part is for the study/trial Dr. Fleming asked me not to put myself in situations where I would have to use my inhaler (so it doesn't skew the tests results).  He told me to tell the hubby I'm not to shovel any snow since my asthma is only a problem in the winter.  I can live with that.  So exercise has to have many breaks which makes it hard to make any progress.  Most of the weight I need to loose will have to be with diet control.  Crap.

First day of MS observation

I went to University Hospital this morning at 10am after dropping the kids off at Kathy Seeger's house.  I didn't get out of there til 2:24 pm.  Originally the appointment was suppose to be 2-3 hours.  Anyway, first was the blood work, then we went off to the MRI.  I fell a sleep while in the MRI machine.  Operator got freaked when I didn't answer right away that I was alright.  After that Namita was paged so we could get on with the rest of the tests.  Instead I waited and waited.  After 45 min I asking them to call her instead of paging. Sure enough she never got the page.  So after lots of apologies we finally got back to the rest of the testing.
Anyway, I got blood drawn, was asked a bunch of medical questions, MS physical [similar to a drunk test], and a math test to evaluate cognitive skills. I've never felt stupider than I did after that math test.  It seemed so simple.  A voice on the computer says a number (#'s1-9 only) then another number which I had to add and tell (not write) the sum before the voice says another number.  When the next number is said I have to add that number to the last number spoken. And so on and so on.  It seems easy but I tested it out on the kids and they got frustrated because they kept wanting to add the next number to their last answer and not the last number spoken.  Once you get it wrong, it's hard to get back on track.  The trick is is to just wait and add the next two numbers you hear and continue from there.
After Dr. Fleming was done with his part of the evaluation my MS symptoms were categorized at a 1.5 out of  10. 10 being the worst.  Mainly my eye and bladder got me that score.
Oh yeah, I also was sent home with SWAG.  Drum roll....stool sample kit!  Sam nearly through it across the room when I told her what it was. HA!  I have to bring in a sample to each evaluation, which is once a month.
I will have 5 evaluations (one a month) then I will be on the HINT (whip worms) for 10 months.  Then, more evaluations for a couple more months to see how I'm doing after the trial is done.  After the whole trial is done I am allowed to get a copy of how it went.  For now they can't let me see or know anything so I don't screw up the results.

Matt's scary almost accident!

I got these emails this afternoon from Matt:

Somebody tried to cross into my lane.

Which would have been fine if it hadn't been the exact same space I was occupying!

 

A few seconds of squealing tires and a dizzying 360 degree view of the highway later, I was stopped in the far left lane, perpendicular to the shoulder, while traffic backed up to the right of me.

 

...Good times.  Good times.

But losing control of the car while it spins around and back and forth across three lanes of interstate is enough to keep one's hands shaking well after it happened.

It's funny.  My life didn't flash before my eyes.  The only thing on my mind was what death would feel like.  Because I thought for sure it was about to happen!  Ha!

Thankfully no one was in either lanes by him!  We thank the Lord for protecting him!  He didn't even get hit by that driver who, by the way, kept on driving.  His car did shut off, but after letting it cool down a bit, it did start again and he even made it on time for work.  So many factors worked in his favor. No other cars next to him, not winter, and everyone behind him stopped and went slowly around him.  I can't praise the Lord enough that he is safe!

little ears

So what age do kids pick up on Mom and Dad speaking in 'bedroom code'?  Apparently age 12.  At least that is how old Zach is now when we realized he was understanding us.  Oops!  Time to change the subject.

Rotting tree gets scalped!

Our one and only tree in the front yard has been sick since the day we moved in.  It has gone down hill more and more each year and threatening to drop large limbs on our cars, roof, and people.  After much back and forth with Allient Energy, they finally came 2 days ago and said they would cut off most of the tree limbs.  Leaving the large trunk behind.

No surprise the kids instantly turned the debris into a playground.  Here is Sam in the 'fort.'

The walkway to the front door was blocked by branches so the kids took turns chopping a path.

Instead of paying for someone to haul the mess away I just advertised "FREE FIRE WOOD!"  Already got some people to take some wood.  We did spend the day yesterday loading my neighbor Debbie's trailer with smaller branches and leaves and hauled it to the city yard waste department.  There is still a lot left to do, but we can't get to it til the large limbs are removed.

Prayer and anointing with Grandpa Mathie

"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. " - James 5:14.
I was blessed to have my grandfather do this on August 16th.  His prayer and petition for healing brought tears to my eyes.  My children got a rare opportunity to see my grandpa as a man after God's own heart with his tattered old Bible that is written in, highlighted, and book marked in several places.  They prayed with him and watched as he put a dab of oil on my forehead.  We have seen the Lord answer prayers in the past.  Not always the answers we want, but always the right answers.  I have faith his answer will be the perfect one for my life.
Yesterday, as I was working outside picking up stick and debris from our front tree being reduced to a very tall stump.  I noticed the vision in my left eye, that has been giving me so much trouble, was actually clearer than it normally is when I work outside in the heat.  My mind instantly turned to my grandfather praying over me and anointing my head with oil.  God is good all the time!

The puberty talk...gone horribly wrong.

Zach has been talking all day about how he thinks he's going through puberty simply because his voice squeaked a few times.  So inevitably Samantha asked, "what do girls go through in puberty?"  Zach doesn't even give me time to respond and yells, "YOU BLEED EVERY MONTH!" along with maniacal cackling.  This of course horrified Sam and she responded, "No we don't." and then looks at me for reassurance which I couldn't give.  I kicked Zach out of the room and gave her the low down on what it means to become a woman.  She was not happy.  She asked if it hurts.  Ugh, I had to tell her about cramps, but I explained that exercise and eating right will make them less painful and possibly nonexistent.  That'll get her to eat her veggies!  I'm so manipulative.  Then she asked, why all the bleeding.  So I had to explain the birds and the bees.  She must have figured if girls go through so much then boys must experience a lot too.  So she made the mistake of asking.  She was not pleased.
Poor girl will probably have nightmares now.  I had this image in my head of how I was going to explain it all.  It was going to be wonderful and bonding.  Not, "YOU BLEED EVERY MONTH, HA HA HA!"

I've been approved

Dr. Fleming called today and told me I have active lesions so I qualify for the trial. Talked it over with Matt and we think I should do it. I actually have to have MRIs and neuro exams every month for 4 months before I get the actual treatment.

Wausau trip with Mabe

Drove Mabe to Wausau to see John and Jeff Duranso.  Lori and Lisa were away on a church trip.  While up there my grandfather anointed my head with oil and prayed over me.  It was really spiritually moving for me and the kids.
The next day, Jer and Laura invited us to go tubing.  Mabe and John were invited to join us.  It was a blast.   John was the bravest of all the kids!  He was the first one to get on the tube.

When the ride was over the tube dipped forward, flinging him into the water!  So Mabe joined him for the next ride to make him fell safer. 

It was Mabe's first time tubing and by her multiple fist kisses (sign for "love it") it was pretty clear she was having a great time!

John raved about it so much Sam was next to jump at the chance but she wanted me to go with her.  No problem I was totally game for that!

Typical adventurous Sam loved every minute of it!  She kept wanting Uncle Jer to kick it up a notch.
Since she was now confident and comfortable with tubing I got off so she could ride with cousin John.
the bumps were their favorite!

Zach was with us as well, but he was dead set against trying it.  We all tried to convince him but he said he preferred staying in the boat.  So Mabe and I got on together.  Jer took this opportunity to drive a lot more crazy!  It was so fun!

Jer also had water skis and asked Mabe if she wanted to give it a try.  She was braver than I and gave it a try.

It didn't go as well as she hoped.  Whenever we would get started the water was spraying up into her face and nose so she would let go.  We all know how uncomfortable water up the nose is. OUCH!  She tried several times before giving up.  She does want to try this again sometime, but will use a nose plug next time.
After seeing all the fun everyone was having Zach finally gave in and went on, as long as I went with him.  It didn't take him long to confess he loved it.  He said to me while on the tube. "I can't believe I was afraid to do this!"

Now that Zach was on board with the tubing fun.  All three kids rode together til we had get off the lake.

Can't wait to be able to do this again!  I really hope Matt can do this with us next time.

Zach's 12th Birthday

 Zach and I frosted this cake together (Whip cream frosting - delicious!).  The character is pokemon's Oshawott.  Don't ask me what that is or means.

We were so blessed to not only have Aunt Mabe with us for Zach's birthday, but our friends the Christensens were visitng from Haiti.  John was able to bring Caleb and Nathan.  Jenny was up north with David to drop him off at camp.  And on short notice the neighbor boys, Andrew and Levi, joined us.  It was a small get together without gifts.  friends and family were enough.

 After all had left, Zach did get some birthday presents.

Aunt Kiki got him the always awesome Hitch Hiker's guild to the Galaxy.  I might steal this once and a while, shhh.
Aunt Mabe gave him an art book teaching how to draw Japanese cartoons and Matt got him a Farside comic book.  Few weeks later while in Walmart he finally used his birthday money to buy Heroica Lego game.  I helped pay for some of it as my birthday gift.  Happy 12th Zach!  Your child hood days are quickly coming to a close.  I have joy in seeing you grow and sorrow in the knowledge you will leave one day to start your life as an adult.  I'm convinced this is why The Lord gives us a much longer time with our children than any other animal.  He knows what it is like to watch a child leave the nest.  What grace He gives us parents.

HINT screening.

I went in today for the HINT trial screening.  HINT stands for Helminth-induced Immunomodulation Therapy.  Helminth is a small parasitic intestinal worm [whip-worm].  In order to qualify I have to have new lesions on this MRI compared to the last MRI in June.  Sort of a smaller window than I originally thought.  If I don't qualify this time I can go back for another screening in 60 days.  If I still don't qualify then I will not be able to participate in the trial.  Although I sorta want to be in this trial it would be silly of me to wish for new lesions.  All I can do is leave it up to God.  He will get me sorted :).
I started the screening process with a delightful woman named Amita Azud.  She filled me in on all the above info but more in-depth.  We then proceeded to the research department which is in an area of the UW hospital with no windows.  Of course, 3/4 the way through I had to pee.  Like really bad.  When they stopped to put in the contrast I begged to be let out to use the bathroom.  I even peed before getting into the machine, but my bladder couldn't seem to last more than 45 min!  Note to self, take bladder control meds before an hour and 20 min MRI visit.  Again, I blogged way too much personal details.  Deal.

My options

Had my first neurology appointment today as a MS patient.  I met with Dr. Fleming, who I had seen 5 years ago.  He seemed to feel the need to explain why he missed my MS 5 years ago.  I told him I completely understood.  I mean I had symptoms that were very similar to migraines. The diagnoses then seemed to fit.  This recent "flare-up" was a little worse and with the additional lesions on the MRI it was logical to check for MS, unlike 5 years ago.

Dr. Fleming is a big fan of analogies and described my MS this way:  Imagine an iceberg.  The very top is like people with obvious MS symptoms ( numbness, weakness, etc.).  Under the water are like people who never have any symptoms and never really know they even have it.  I'm at the water line.  Just barely any symptoms.  Of course this can change at anytime.

He sent me home with some information about current medications that may help manage or reduce MS flare-ups.  He cautioned that theses info packets are basically advertisements and should be taken with a grain of salt. 

• Rebif
• Betaseron
• Copaxone

He did prescribe Oxybutynin for my bladder.  That's right folks, I am one of the luck MS people who constantly has to pee like every 2 hours.  It's been such a problem that I can't get a full night's rest.  I'm hoping this will help.  He recommended that I cut the first dose in half (so my body can acclimate itself) and take it tomorrow morning while I'm having my morning tea and breakfast.  Then keep track of how much time there is between potty breaks.  You just had to know that right?!  Then, if I'm happy with results, I can take it at night before bed since that is really the only time it's a problem for me.

He is also sending me some info on a current trial going on that I might be interested in.  If I decide to do it I will have to drink worm eggs...eeewwww.  Here is a pdf file link describing it. 

[PDF]Fleming's Worm Egg Research Entering Second Phase

It's does look promising.  He said the reduction of lesions for some MS participants was 60%.  That is very encouraging.

Multiple sclerosis explaination

From talking with several people after my diagnosis and getting a lot of questions I realized explaining MS would be helpful.  I'm going to be quoting from the National MS Society a lot so if you want more detailed info go to their website: http://www.nationalmssociety.org

First off, the cause of MS is still unknown.  They do know that it's a disease of the central nervous system (the brain, optic nerves, and spinal cord) and is labeled as an autoimmune disorder.  basically that means my body's immune-system is attacking the protective coating around my nerves called myelin.

So the white spots on my brain in the MRI scan are areas where the myelin coating is damaged and replaced with scars of hardened "sclerotic" tissue.  Dr. Fleming says it's more like blisters on the brain than hard tissue.  When that happens the nerve signals can't transmit properly or may be severed completely.  This can cause a wide variety of symptoms depending on where the damage is. Symptoms like:  "blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, and blindness and more. These problems may be permanent or may come and go." - nationalmssociety.org

"Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited." - nationalmssociety.org.  I was officially diagnosed at the age of 32 but I showed symptoms when I was 27.  This is a very typical age to get MS.  In most cases MS is not fatal but most struggle with increasing limitations.  So far, my vision, concentration, memory, and speech have been affected.  These kind of symptoms are considered invisible.  While they affect me greatly it may not be noticeable to others.  I feel like what makes me me is slowly being stripped away.  The talkative social butterfly I use to be is shrinking.  I fear getting involved in social situations (especially those with unfamiliar people) because I don't know if my verbal abilities will fail me or not.  I worry about being in charge of something and my vision, memory or concentration just won't allow me to get the job done.

Studies also suggest that those lacking certain vitamins and minerals add to their susceptibility.  After doing some research and reading about others with MS and what they have done health wise that has helped.  I have chosen to take vitamin D3, fish oils, B-12, Migrelief (B-2, magnesium, feverfew in it) Newchapter organics Every Woman multi-vitamin + Herbs and minerals.  I take these all twice a day except B-12 which is a morning only pill.  Since those who are overweight and unhealthy have more MS symptoms than those who are healthy.  I'm going to probably join the YMCA and start a swimming regiment.  Heat and humidity can cause MS symptoms to flare up.  In my case I noticed when I work out my vision in my left eye become unbearably blurry.  I'm hoping that swimming will keep my body temp level while I exercise.  I'm also going be more strict on my diet.  Sticking to South Beach because I've done it in the past and know it works.  I have an appointment July 21 with my neurologist.  At the appointment we will be deciding what needs to happen next.  I may or may not be put on medication.  We'll see I guess.

I hope this all help explain a lot.  If you have more questions, just type them up and I'll try to do my best to answer them.

The diagnosis

Got a call from Dr Seeger's nurse Shannon, and she told me that I have an excess amount of proteins that is considered a positive test for MS.  I got the call at 7:50AM right around the time we were dealing with a severe thunderstorm.  I cried with the God this morning.

Day of hospital testing - Done!

Matt, I and the kids left our house at 8am on Wednesday, July 6th, to drop them off at John and Jenny's house.  John and Jenny will be keeping the kids til July 10.  During that time they are even going camping at Lake Emily for the weekend.  Lucky ducks!  Karen is going to be driving our kids to the camp grounds since there isn't enough room in John and Jenny's van.  Then Karen is going to meet my mom and dad in Plover on Sunday and give them the kids who will then spend the rest of the week in Wausau.  they have never gotten to do this before and now that my mom is not working it's a great opportunity to be out on the farm.  So by the time the kids return on the following Saturday they will have been away for a week and a half!  We have never been apart for that long!
Anyway after we dropped of the kids and said our goodbyes laced with behavioral reminders and I love yous, we headed off to the UW hospital in Madison.  We had to be there by 9:30am for check in.  My first appointment was an EEG at 10am.  Basically the doc glued wires to my head and I watch a checked TV screen that moves for a half and hour for each eye.  Pretty easy and very boring.  When I was all done he used nail polish remover to get the wires and glue off (well most of it).  I had glue chunks in my hair the rest of the day.  I then checked at the registration desk about where to go for my lab work.  They said I didn't have lab.  I knew I did so I went up to neurology and asked them.  They didn't have record of it.  I wasn't convinced so I asked to talk with Val, my doctor's nurse.  Well Val was on vacation but her substitute checked Val's notes and sure enough the order for lab was there.  It just never got entered in to the computer.  If I wouldn't have been persistent, I would've had to drive all the way back to Madison just to do lab work cause someone dropped the ball.
After getting directions for the lab area I got 4 vials of blood drawn and then Matt and I went to eat at the cafeteria.  Oh my goodness was the food selection awesome!  I was really hungry by that time so I bought more that I should have.  Dumb dumb idea.  I was full during my spinal tap and very uncomfortable.  Well, more uncomfortable than I had to be anyway.
The spinal tap procedure was... Well to be honest, awful!  Matt wasn't allowed to be in there with me which sucked.  Also, I'm sensitive to lidocaine and if given a lot I tend to get sick.  Doctor Seeger said that was going to be a problem because that is usually what they use and any other substitute was a lot like lidocaine and would cause the same problem.  Since I'm usually fine with a little, she had me do the spinal tap sitting up so the process would be 10 minutes long and not 20-30 minutes long.  I was totally fine with that.  However the downside is I had to hunched over my full stomach, blech.  After I got injected with the lidocaine I got sick.  I felt the urge vomit.  Now this might have been because I was nervous about what was coming next.  I'm not sure. I did manage to keep it in and after my hair was pinned up I felt a little better.  I was told not to move because she marked the area and if I moved she would lose the spot.  But I was hunched over for about 10 min and my shoulders and neck where getting very sore and we hadn't even started the spinal tap yet.  I told her I was worried I would end up moving because I hurt so bad.  I asked for a pillow or something so I could rest on that while I was bent over.  She said "Oh you mean I forgot to give you a pillow?!  Sorry about that!"  Seriously lady?  She finally hands me a pillow but I was so tensed up by that point because my neck and shoulders were killing me.  I did feel the needle for the spinal tap and I felt it the whole time.  There wasn't just pressure like most people say.  I think that had to do with the limited lidocaine she gave me.  I felt shock bursts go down my right leg several times which made me involuntarily flinch.  The last shock was the worst as she was pulling it out.  My right side has been sore ever since.  I hope I never have to go through that again!  She did show me the vials of spinal fluid.  It's clear like water.
After she put a bandage on me I had to lay down for 1 hour.  Matt was allowed back in the room and we watched TV while I drank caffeinated beverages and ate salty pretzels on a full stomach.  Again blech.  I had to eat salty things and drink caffeine to help my body replenish and to prevent a migraine.  It was about 2pm when we were finally allowed to leave.  I was told to lay down as much as possible for the next 24 hours and not do much for a week.  Matt took me home and cared for me.  I was so hopped up on the caffeine I couldn't sleep so we watched episodes of The Big Bang Theory.  I did succeed at not getting a migraine. Yay!
I've been watching videos on Netflix or reading my book again today.  I still hurt but not too bad.  Luckily I have an awesome hubby who is doing everything for me.  How blessed am I!  Finally got to shower and still can't get all that glue out of my hair.  Dr. Seeger said she hopes to get back to me by Monday on the MS test.  She said she will call regardless if the test is positive or negative.  So I should know by next week if I have MS or not.  I have peace about it which only the Lord could provide.

Relapse

So I have been struggling with my vision again in my left eye.  Doctors ordered another MRI and when compared to my 2006 MRI there are more lesions (white matter-plaque or scar tissue). They actually look like little light gray spots.  The concern of MS came up again so this time I get the joyful experience of a spinal tap. *sarcasm*

I'm very nervous about this procedure.  I get weak just thinking about it.

Here is what I will be experiencing on July 6th:

Lumbar Puncture

For a lumbar puncture, you lie on your side with your knees drawn up toward your chest. This position helps widen the spaces between the bones of the lower spine so that the needle can be inserted more easily. A numbing medicine (local anesthetic) is put in the skin. Then a long, thin needle is put in the spinal canal to collect a sample of cerebrospinal fluid (CSF). Your doctor may need to move to another area of your spine if it is hard to get to the spinal fluid.  Process takes about 20-30 minutes.

After the procedure, I will have to lay in the supine position for 24 hours, then for 5 days I have to take it easy so the puncture site can heal.  Matt is taking the day off for the lumbar puncture and will be caring for me.  Jenny has so graciously volunteered to take the kids for a while.  Kiki, John, Jenny & boys plan to take the kids camping at Lake Emily too while I'm laid up.  Then, my mom is taking the kids up to Wausau just because she wants too.  I don't know which day yet she will be bringing them home.

I ordered my 2006 and 2011 MRI images and notes.  Seeing ones own brain is very surreal!  It took some studying and practice but I think I am now able to discern a lesion or two.  The speech area of my brain has some lesions so that explains a lot!  Recently I have been having a very difficult time speaking.

Here is a picture of some of my lesions:

Turns out the vision problem is an inflammation of the optic nerve of my left eye.  I don't know if this is related to the lesions or not.  The doc said to take baby Aspirin and see if that improves my vision.  So far, little to no improvement.

Well, that is the skinny on what has been going on with me.  I will update when I can.

Sam's knitting instructions

 

Kids preform at St Elizabeth

Sam Preforming Through the Woods

Zach preforming Glorify Thy Name.
I don't have the video yet because Blogger won't let me.

Matt the sewing king

Matt made both of these stuffed toys.  Zach created/made up this character, Scorpio, years ago and is still his favorite.  So Matt made this stuffed version for Zach to have.  So not to leave Samantha out, Matt made her the Tenth Doctor from Doctor Who.  Ladies and gentlemen SCORPIO AND THE DOCTOR! 

Zach's mental math

Can you do this math problem in your head.  I sure can't.  But, Zach can.  Everyday him and I have this battle with math.  I want him to write it out so I can see how he got the answer and he doesn't see the point in writing it out if he can do it in his head.  By the way here is the answer:

Colleges, you better start lining up now!

Why collective bargaining for government workers is a problem.

Unions at one time were needed in America. They improved work conditions and gave workers a voice. Fast-forward, we now have laws in place that protect the rights of all workers - union and nonunion. So the union entity is almost irrelevant and has become a cartel that can bully it's agenda in the political arena.

In Wisconsin the biggest complaint from state workers is Governor Walker taking away most collective bargaining rights. They scream: "unfair, your are taking away my rights! My voice!" However, that is fundamentally untrue. As it is right now, state employees get to bargain on both sides of the table. As tax payers and as union members. Sure, they pay taxes like the rest of nonunion Americans, but here is the kicker, they get their taxes back in their pay check. It's like taking money out of one pocket and putting it in the other. Plus, they get payed from the tax payers. Sweet deal right?! For nonunion people they get payed from their private sector employer (who also pays state and federal taxes), taxes are taken out and given to the government to pay the employees. That is why government should never make more money than the private sector. This is basic economics that even my kids understand.

Now, back to collective bargaining. Here is a basic definition.

"Collective bargaining is a type of negotiation used by employees to work with their employers. During a collective bargaining period, workers' representatives approach the employer and attempt to negotiate a contract which both sides can agree with. Typical issues covered are hours, wages, benefits, working conditions, and the rules of the workplace. Once both sides have reached a contract that they find agreeable, it is signed and kept in place for a set period of time. The final contract is called a collective bargaining agreement." - Wisegeek.com As is clear, the collective bargaining "rights" are only held under the contract agreement. And the agreement is for a set period of time. It is not a right under state or federal constitutions.

With that definition in mind understand that the tax payers are the employer and the state workers are both employer and employee - since they both pay and receive tax money. So, government-tax-paying-employees who knows they will get their taxes back in their pay check will, of course, rally for higher taxes (usually on the "rich") at the bargaining table and rally for better benefits, wages, etc. at the bargaining table. That is double representation during collective bargaining negotiations.

Innocent childhood felon

Matt told the kids today that we want them to enjoy their childhood while it is still innocent.  Sam replies, "Is my childhood going to commit a crime?"
Best. Line. Ever.

Author response

I previously blogged about Zach at the YMCA and shutting off the water before it flooded.  Matt has met the author of The Dog Poop Initiative.  So he wrote the author, Kirk Weisler, on Facebook and told him about Zach taking the initiative and shutting the water off after some kids just point at the mess being created and walked away.  If you haven't read it, I recommend reading it to your kids and even yourself.  It's common sense stuff, but it's the civic responsibility our society is lacking.  If you see a mess don't just point it out, complain and wait for someone else to take care of it - CLEAN IT UP!
Kirk Weisler, was impressed with Zach and sent him a signed copy of his book!  He wrote:  " Zach, You are a Super Scooper.  Continue to take the initiative and be a LEADER." - KW

Sam's 9th Birthday - update

Like I had posted before, Sam didn't get much of a birthday.  But she did get a special birthday trip with her Aunt Kiki to Build-a-Bear when she got better.

Here they are with Sam's monkey, Alana.

Aunt Marybeth's blanket did finally arrive along with the pillow she made for Zach.

Ignore the picture's date.  My camera went wonky that day.

Sam's 9th Birthday

Sam had a very sickly birthday this year.  She started her illness(fever, sore throat and sinus infection) on Sunday January 9, right after Mary Beth arrived for her visit, and after several trips to the doctor's office and lots of sleep, her fever finally broke January 15.  So she didn't get to celebrate her birthday like she would have wanted.  But she did get her favorite breakfast, crepes, and her gifts from her family.  From Zach she got the pillow pet pictured above.  She named it Mutt.  I bought her the fuzzy pink pants in the picture above.  And from the doctors she got a myriad of meds.  Mary Beth made her a blanket but it hasn't arrived yet.  When it does I will add a picture to this post.  I promised her she could have her bff Lily for a sleep over for her birthday.  Once her stuffy nose is gone she will finally get to do that.  I feel so bad that she didn't get much of a birthday party.  I think this year we will have to throw her a party in the summer to make up for it.

ultimate motivator

Nothing motivates an older brother like his little sister passing the swim test before him.  Zach was determined to pass tonight.  He worked himself to near exhaustion that when he said he was ready to take the test I thought he might be too tired- but he did it!  I don't know who was prouder him or me :).  Plus, now I can drop the kids off at the pool and exercise alone.  Ahhh, blessed freedom!
Then Zach goes and proves he's a good citizen.  There were some rowdy boys in the boys lockers who noticed that part of the locker room was flooding because some showers were left on.  they commented how cool that was but didn't do anything about it.  Zach went to investigate and couldn't believe these kids just saw the problem and walked away.  So he goes in and shuts all the showers off.  Moments like these reminds me why Matt and I work so hard to educate our children to be responsible respectful citizens of the world.

Swim test

We joined the YMCA last week and the place to be, for the kids, is the pool.  But, I have to be with them until they pass the swim test.  Sam was sure she could do it right away.  So she tried and failed.  Mostly because she didn't breath while swimming.  Zach saw Sam fail and told me, "If Sam can't pass then I won't either."  But they both started working hard to improve their swimming each time we went to the pool-which has been like 4 times.  Sam choose to practice the back stroke since she was told she had to swim the length of the pool and back again whichever way she wanted to just as long as she was swimming the whole time-no touching the walls.  So today she practiced and practiced when she was confident she could do it, she told the life guard she wanted to take the test again.  Now this was a different life guard from last time so as Sam is finishing her test he says.  "She has to swim on her front to pass the test."  I'm like no way is this guy going to dash my child triumph because he decided her way was not good enough.  So I told him of the last guard who said it would be fine and he let her pass.  I was so happy for her and could see how proud she was of herself at succeeding.  She never knew that the life guard almost didn't pass her.