I took ______ and went from being in a wheelchair to doing 3 Triathlons a year!

*The item shown above is not a real product and I am not in the process of making any MS drugs.

Jenn's at home research she uncovered all kinds of MS solutions.  The internet was fairly new at this time so knowing if something was legit was more difficult.  Creams, patches, diets and even powders that all claimed to have "amazing" results with MS.  They always had outrageous success stories.  These "testimonials" to me seemed pretty over the top.  However, I was not the one looking to cure/help with a disease.  To Jenn some of these sounded really good.

So we ended up trying some of them.  None of them where FDA approved.  There were plenty of pictures of people wearing white doctors jacket with success quotes about the treatment next to them.  The one thing that they weren't was inexpensive.  Generally in the $150-$500 price range.

My thoughts/approach was to go with it and support Jenn.  I had serious doubts about its claims and such but I also had the little voice telling me "what if it is true and helps/cures".  If she wanted to try it and it did not present a health risk then I was good with it.

Jenn ended up trying some of them.  One was a cream made up of all kinds of vitamins that you put onto a patch and stick it on.  Other than creating a red spot on her where the patch was it did not do anything.  She was disappointed that these "alternative" methods did nothing.  What it did for her is bring to light that the internet can be unreliable and untruthful with its information.  She wanted to know how they could claim such results?  I explained  "you can say or claim anything you want on the internet.  I could put on a doctors jacket and claim that something works.  People see the doctor apparel and assume (in some cases) that the person really is a doctor.  The "testimonials" are likely not even from real people"

My problem with the people and "companies" selling this stuff is that it sells its goods on hope. I feel this is predatory selling.  You market to a group of people who desperately want to be better and boast unproven results and sell the whole thing on hope.  People who are ill buy hope.  My guess is that the people selling this stuff know straight up that it won't help but by marketing with hope they stand to make money doing it.  They will put a clause in the purchase agreement that keeps them out of legal liability for results.  Simply modern day snake oil salesman.

With all of this said there are true alternative treatments that can produces positive results.  I have talked to people who have done them and had success.  The one thing became very clear very early in Jenn's battle with MS it is different in each person.  Essentially meaning that something can work great for one person and provide no results for the next person.

Next post: Oh Avonex, why is your needle so big?

Thanks for reading.

-Brent

Reject Defeat

I'm home full time.......now what?

You can take Jenn out of a productive job, but you can't her need to be productive out of Jenn.

Then:  4:30am - alarm goes off, get up, into the shower, pick out today's wardrobe, turn on coffee maker, start to put on make up, return to kitchen to pour a cup of coffee, return to bathroom to continue getting ready, back to the kitchen to drop down some toast, return to bathroom to complete getting ready, return to kitchen and butter toast, turn on morning news, sit, eat toast and watch the traffic reports.
Now: no alarm set, no hustling around to get ready, just you and the cats and dogs.

Then: 6:00am dash into car and hit the road to work.  Drive like half-crazed person to try and beat the traffic and get a good parking spot at work.  Arrive at work at 7:00, give morning "hello's" to coworkers, log on to computer and check email.  Check voice mail messages and take notes on calls to be returned today.  Study work calendar to ensure that the day is prioritized correctly and make needed corrections.  Quick run into the kitchen to put lunch in fridge and grab a cup of water. Return to desk, log into the phone system and away we go.
Now: get up.  A shower can be optional.  Determine if vertigo and fatigue are making a morning visit.  If not proceed to kitchen to get a cup of coffee and make a little breakfast.  Now that breakfast is done look around the house for something to do in order to be productive.

Then: 4:00pm run to car like your hair is on fire to once again try to beat the afternoon traffic.  Get in to car and immediately turn on AM radio to get a traffic report.  Listen to traffic report and adjust travel home to miss as much traffic as possible.  5:15pm arrive at home and change into comfortable clothes.  Take a peek in the fridge in hopes of scoring an easy to make (hopefully leftovers) dinner and relax until Brent comes home from work.
Now: Look to make dinner.  Not sure if you have enough energy to make something that requires more than turning on the oven and placing it into the oven and setting the timer.  Watch TV and wait for Brent to get home.

This is what the change was for Jenn.  Going from a fast paced professional career to being home full time with not a lot to do in order to feel productive.  Wow, what a mind game.  How do you make this dramatic adjustment without driving yourself crazy?  In America we put so much self-worth into our careers.  You know, how far did you advance by what age and how much you earn. Jenn retired from work at the ripe old age of 27.  I put myself in her shoes and what it would be like for me to be home all day and not working.  Needless to say my head hurt after a couple minutes of thinking about this.  I have a hard time sitting still for 5 minutes and the idea of being home all day just did not compute.

I was working full time.  At this point it was Jenn, Zoie & Ima (our dogs) and Goliath & Thor (our cats) at home all day.  Thank God for pets.  They are such great companions.  Advice: if are home full time pets provide a very nice companionship for the MS fighter.  This is just our opinion but they really made difference. I know how much I dislike being at home with nothing to do and the though of doing that full time makes my head hurt.

After rearranging the furniture a couple of times and other household stuff Jenn had essentially run out of stuff to do.  I could feel the frustration and confusion from her.  Then came a moment that changed everything for both of us.   One morning before leaving for work I was feeling uneasy about her mental and emotional state and I asked her "now that you are home full time what are you going to do?" and after about a 5 second pause she replied "Well, I have 2 choices.  I can sit here and let the MS kick my butt or I can kick it's butt".   I asked "what are you going to do?" and with a spark of fire in her eyes she quickly and confidently replied "I'm gonna kick its butt!".

That was such a defining moment.  I have told this story  probably over 100 times.  Her reply set the stage for her attitude in her battle with the MonSter.  I knew at that very point I was married to someone who was going to roll up her sleeves fight.  My concern was that someone could just sit back, take cover and let the MS kick their butt.  After that point when I was at work or away from the house I had no concern that Jenn wasn't doing anything but fight for her health.

Guilt, self worth, purpose where all things floating around in Jenn's head.  I understood it because I would have the same thoughts and feelings.  I was a little concerned that all of this would pile up so much that it would create a massive depression.  The kind of depression that keeps her in bed, in a dark room and there is not much other than crying kind of depression.  Thank God that did not happen.  Yes, she did get depressed.  Who wouldn't?  It didn't paralyze her though.

It took a little while but Jenn did figure out how to be home full time.  She didn't like it and has always refused to accept that it is her "call" to be at home full time.  She decided to go head first into MS research.  Everything and anything about cures.  This ended up really consumer her.  Her determination to find something to help her was ferocious.


The next post will be:  "I took ______ and went from being in a wheelchair to doing 3 Triathlons a year!"

Thanks for reading,

-Brent

Reject Defeat

I look up to and admire my wife and the fight she puts up with her MS!

"Life is like a box of chocolates.  You never know what you're gonna get" - Forrest Gump.  I would change the word "life" with "MS".  For Jenn that would be more accurate.  You don't know what is next (if anything).  I would suggest that "life is like a steak.  Here is why I say that.

Life is like a steak because:
You choose your cut.
You choose how to prepare your steak.  To marinate, tenderize, add spices or nothing at all.
You pick the temperature and cook time.  Rare, medium well, well or very well done.  It's up to you.
If you over cook, under cook, over spice, under spice it that's your fault.  You got to pick the meat, how to prepare and cook it.  If you where unsure on how to do it you could do a simple internet check and come up with thousands of suggestions on how to do it.

MS is like a box of chocolates:
You don't know what you're going to get (if anything).
Like some days, months or years with MS....some chocolates are good the others suck!
Most of the time there is no "map" to choose what chocolate you want.
Each brand varies.  Quality, quantity and types of chocolate.  MS varies person to person.

I say this because when Jenn first went out of work and her health was continuing to slip downward with a few days of "better" health.  Those days of "better" health where like a bite of steak.  I savored them and we took full advantage of this time.  This has been true throughout our 17 years of marriage.  Through the ups and downs, challenges and victories we always savored the good times like a juicy steak.

As a passenger on the MS bus I have got to see how Jenn handles her MS challenges.  My wife kicks butt. MS punches her in the face she sticks her chin out and yells "is that the best you got?" and proceeds to fight with everything she has.  Her fight and toughness are incredible.  Looking back to when she first started having real challenges I witnessed this incredible fight and drive.

Here are a few words and thoughts I have about Jenn and her MS fight:

She has MS.  It will never own her.
Chooses fight over flight.
She may be bent but not broken.
Stands tall in the face of adversity.
She inspires others, but often does not realize it.
Fiercely independent.
Will never give up and never give in.
She doesn't like it but accepts there are things that she can't control with her MS.
Never sees herself as handicapped.
Always pushes her limits.
She rejects defeat.
Never takes times of better health for granted.
She brings a cannon to the knife fight.

I truly admire her fight and her ability to adapt to health changes from MS.  To me it's stuff movies are made of.  I have been encouraging her to blog about living with MS.  Her humble answer was "why?  my life isn't that exciting".  I responded " It's to share what you have experienced, how you handled it and what tools you used".

Well, she is starting her blog.  I will post her blog address on mine (once I figure out how to).  We are both blogging rookies and will fumble around for a bit until we figure out how to do things.  If you blog and have "how to" tips please share.  :)

Next post will be "I'm home full time.  Now what?"

Thanks for reading.

-Brent

Reject Defeat

In the beginning part 3: Goodbye to full time employment.

I

With all of her symptoms picking up speed like a snowball going down a steep hill the end was in site.  No, not that end.....the end of work.  This would be the biggest hurdle ever. How does someone transition from being a productive full time employee to being at home full time?  Here's the answer: you don't.  No matter how much planning and thought go into it there simply is not a smooth way to do it.  In Jenn's case she was young, very intelligent, vibrant and a good employee.

Jenn had been missing work off and on for a couple months.  Day here, day there, three days and a week there.  The main cause was dizziness and the others where sick days.  With her compromised immune system a common cold quickly dove tailed into the flu.  She was beginning to see that working was going to go away.  Fighting with everything she had to keep working wasn't enough.  The physical symptoms along with the mental ones were winning this battle.

I looked at our finances to see what the impact would be of her not bringing in an income.  It was going to be tight but we could do it.  At this point there was no choice it had to be done.  The unknown for me spooked me for a bit.  What if we don't have enough money to pay the bills?  What if Jenn's keeps going down hill and needs someone with her full time?  What if, what if and what if.  Again, I realized the "what if?" game is a loosing proposition.  I certainly wasn't going to gain from it and it would only add to Jenn's more than full plate if she knew what I was thinking.  My solution: give it to God.  I found be giving it up I removed all the clutter in my head and I can better focus on the right now.

Now the idea of not going to work and being home full time is a complete shock to the system.  The physical affects of her MS are the most part obvious but the mental and emotional hell is worse.  Scared, guilt, depression and shame clouded her head like a like a rainy Northwest winter day.  Nothing prepares you for that.  A health based decision as big as this really hits you from every angle. I was the one encouraging her to quit working.  She (be practical) said "we can't afford for my loss of wages".  I countered, "actually, yes we can.  I did the math.  It's going to be tight but we can due it".  Honestly, at this point I didn't care about the finances.  As long as we had food, shelter and transportation the rest was whatever.  Even if we had to file bankruptcy.  Her health is worth way more than any amount of money.  We'll thank God, we did make it and did hit any huge financial bumps in the road.

Decision time.  After making up her mind to leave work she slowly and secretly started packing up her desk over a period of a few days.  The next Monday rolled around and she called in sick.  This daily call to tell them she would be out continued for a few days.  After missing more work and now knowing she has MS her employer called and said we need to know if you are planning on coming back to work.  I get it, they have a spot to fill and they can't just let her go.  Jenn replied "no, I will not be coming back". The credit union explained the process of filing short term disability claim and what to expect.  All in all the credit union was pretty good to Jenn.  We have heard many stories from other MS fighters who had nightmare experiences.  

I told Jenn all along that this would be her opportunity to focus on her health.  I knew (and so did she) that she couldn't work and get healthier.  It really was the best decision even as tough as it was.  The transition from full time work to being home full time had some bumps.

Day one of being home full time I get home from work and all of the living room furniture was rearranged.  I asked why and she replied "I had to do something productive".  Even though the furniture was better off the it was before I understood why.  In the first few months I came home from work to find the furniture rearranged on several occasions.

Next up: big fancy dinners. Jenn is a great baker and a good cook.  She started making really nice dinners.  Honestly, they where fantastic but I thought they where over the top for two people.  Jenn said "I really want to make nice dinners since I'm home full time".  It ends up these dinners where labor intensive and wiped her out.  I said "I love your dinners but please stop.  I would rather have you feeling okay and have leftovers rather than you being completely wiped out from making dinner". She was concerned I would see her as lazy if she didn't make the nice dinners.  She's not lazy and never has been.  The thought never crossed my mind but the mental/emotional mind games MS brings was responsible for this line of thinking.  

That is it for the "In the Begining" series.  Next post is "I look up to and admire my wife and the fight she puts up with her MS".

Thanks for reading,

-Brent

Reject Defeat