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.