Don't poke the bear.

I think most of have heard the expression "don't poke the bear".  It simply means don't disrupt something if you don't have to.  For this post the "bear" is MS.  Sometimes it's better to leave things the way they are.

A friend of mine I went to high school was diagnosed with MS at the age of 29.  I witnessed the whole process.  He was the pitcher on my men's softball team.  He was always very good at sports and had outstanding hand-eye coordination.  Then odd things started happening to him during games.  He would get a hit and running to first base and would just trip over nothing and fall.  On a few occasions when he was pitching after he released the ball he would just fall down.  This was so not like him.  He laughed it off and so did the rest of the team.  We had a little fun imitating him falling down and he would laugh right along with us.  I was talking to him in the dugout one game and he told me his right arm and leg where getting numb and that it was getting worse.  He thought it was a pinched nerve in his back or neck even though he no pain in either place.

This was before I had met Jenn and I didn't know what MS was.  But I did know that whatever was going on with him he needed to see a doctor and get it figured out.  This kind of stuff doesn't happen to a 29 year old guy who at the time was in pretty good shape.  That game was the last time he stepped onto a softball field as a player.

After a few months of tests they gave him the official word that he has MS.  Once we all heard the news we all looked at each other in disbelief and mainly because we had no idea what MS was.  His MS was aggressive.  Each time I saw him he was worse.  Slower moving, slower speaking and couldn't walk too far before he was exhausted.  He started using Avonex.  He noticed a marked improvement after he started using it.

A couple months later I went to visit him.  He tells me that he is quitting the Avonex and going to battle MS without any prescription drugs. I looked at him and said "you're out of your mind.  What you are doing is working.  Why mess with success?".  He then tells me that he is going to defeat his MS with his mind and willpower.  Really?  That would be great if you could do such things.  I said to him "if that was possible people could cure their own cancer or whatever ails them".  He said "maybe, but most people don't have my determination and willpower".  I have always been an optimistic glass is half full guy.  But, in this case all I saw was disaster.

I had known him for many years and he was always known for his fierce competitive nature and determination.  He is the guy who dives in to rocks in the "friendly" family volleyball game.  Win at all costs.  He poked the bear.  It took a about 6 weeks but his health started going down hill quickly.  This coupled with his Taco Bell diet and late night video game playing the "bear" was giving him a beating.

If I remember right it took him 6 months before he went back to using Avonex.  Shortly after he started Avonex again I saw him and asked him how the "willpower" cure was going.  He chuckled briefly and said "I don't know what I was thinking.  That didn't work at all and I am back using Avonex".  He learned the hard way that as tempting as it may be sometimes to change your MS treatment it is truly better to not poke the bear.

Next post: Are you trying to fool people about your MS?

Thanks for reading.

-Brent

Reject Defeat

Be thankful.

With Thanksgiving coming up it's a good time to reflect and be thankful.  I would suggest that being thankful should be a daily thing.  I realize some people are going to ask why on earth would I say "be thankful" when my MS is giving me hell?  Am I just an insensitive jerk who only sees things through rose colored glasses? Not for a second.  What I am saying that it is a positive and productive thing to do regardless of your situation.

Everybody is in a different place with their MS and life.  Maybe you feel like you are circling the drain or maybe your health has improved or you have no changes at all.  No matter where you are at with health and life it is helpful to be thankful.  Being thankful is the recognition that even if your situation is far less than what you would like it to be it could be worse.  For instance I read an article on the Philippines storm aftermath.  What stuck with me was the reporter approached a man walking by only wearing one shoe.  The reporter asks "why are you wearing only one shoe?" the man replies "I lost my wife, children and home and the shoe I am wearing was my sons and it was the only thing left".   I read this and paused to think about that.  His entire family and home was destroyed in the storm.  For me this story makes being thankful for every relationship and everything little thing we have very easy.

At her lowest health point Jenn was in a wheelchair and spent 5 years in it.  She would see a disabled child or someone battling cancer and say "I am in a wheelchair but it can always be worse".  I think it's important to be thankful for what you do have.  It is easy to get sucked into the "what I don't have" attitude.  Regardless if you have MS or not I think everyone has experience this to a certain degree.  We are bombarded with advertising telling us if we don't have this or that then we are missing out.  Of course the advertisers are going to say that to create a desire to purchase their product or service.  It wouldn't be good advertising to say "if you use (insert product or service) your life probably won't change but it's pretty cool!".  That wouldn't sell anything.  The truth is that we all would like something more.  The more could be anything.  More time with family, more nights of solid sleep, more money, more electronic goodies or more "good" days health wise.

We live in a hyper fast paced world.  Do it, do it now and do it for less money.  It creates a lot of stress and can distract you from pausing to just take a look around and see what you are thankful for.  Here is a challenge for you.  Take 5 minutes with no computer, cell phone, television or anything that can distract you.  If you have a chaotic household with lots of noise maybe go into a closet or someplace that you can find some peace and quiet.  During this 5 minutes think about everything you have to be thankful for.  It is pretty incredible when you do this.  You start out with the basics of having a place to live, food and clothing.  I think when you are done you will have a clearer understanding of everything you have to be thankful for.

With all of this said I hope you have a great Thanksgiving holiday and enjoy some great food!

Next post:  Don't poke the bear.

Thanks for reading,

-Brent

Reject Defeat

Who supports you in your MS battle?

Everyone needs someone in their life that supports and encourages them.  For the MS fighter it is a must.  In most cases MS is more than someone can handle on their own.  Having a support system is critical and not just for the physical needs (if there are) but the emotional needs.  If you are a care partner you need to be the "go to" person for your MS Fighter.  They need to know they can count on you every time.  Do you have that rock-solid dependable person in your corner?

The fight with MS is much more than the physical symptoms.  There are emotional and physiological components that are unseen but I would consider the far greater challenge for most MS fighters.  The challenge for the care partner or support people is how to recognize the unseen issues.  Let's use depression as an example.  It is unseen and if not treated can become a beast.  How do you recognize if an MS fighter is depressed and especially if they do not say anything about it?  For me it is recognizing changes in behavior.  More eating, less eating, more time spent sleeping and emotions are all at the surface.  For Jenn these are small changes not wild mood swings and you have to really know the MS fighter to pick up on these changes.  As a support person or support people you have to be dialed in on your MS fighter.  Recognizing the small changes is critical.  By recognizing the small changes you can get a quicker handle of what is going on but more importantly it shows your MS fighter that you do pay attention and it really matters.

What does it mean to an MS fighter to have that person or people that will be there regardless of the situation?  The clear answer it means everything to the MS fighter.  I put myself in her shoes mentally and think about how I would feel or what I would do if I was given the challenges with MS.  The thought of not having a support person or people is frighting.  Most MS fighters (especially the ones who are unable to work) deal with issue of isolation regardless if they have a support person or people.  When I think about dealing with isolation and not having a support person or people that would make me feel like I was on a very small island by myself in the middle of the ocean.

If you are the care partner or support team always be prepared and be flexible.  These two attributes are very important.  Be prepared because you never know what is coming.  Even if your MS fighter is relatively symptom free you still need to be prepared.  Enjoy the time of good health but know that it can change and it can happen quickly without warning.  By being prepared and mentally ready if or when there is a downturn in your MS fighters health you can step up and do what is needed.  If you are not prepared and a downturn hits you both are dealing with the changes and everybody is struggling.  I say be flexible because things change.  For example let's say you made plans to meet friends for their kids birthday party at the park.  You get a card and gift and you're ready to go.  The weather is supposed to be a sunny 75 degrees and but the forecast was wrong and it is 10 degrees hotter and humidity spiked too.  Not good for most MS fighters.  You have decision to make.  One choice is to call your friends and let them know you cannot make it.  Or you go the party knowing it there will be a limited time spent there.  More than likely your MS fighter won't want to cancel or alter plans because they don't want their MS to dictate what they do when they do it.  It is a great attitude but sometimes the tough decisions are put onto the care partner or support people that is best for the MS fighter.  Be prepared to always make the best choice for your MS fighter and be flexible.

This subject is much bigger and deeper than a blog post.  I wanted to least get some information out there that may be useful.  If you are an MS fighter please know you are not alone.  If you have local resources like a National Multiple Sclerosis Society chapter close by then use it.  There are a lot of people out there cheering for you to beat the MonSter!  You can email me at info@msfightclub.com and myself or Jenn will get back to you depending on the need.  It is far too important to have support and understanding and the thought of even one MS fighter that does not have that is unacceptable to me.

As you can see below I finally was able to ad a comment box.  For those who don't know this is my first blog I have done so I have a learning curve.  Please feel free to comment, share or whatever!

If you have not visited my wife's blog please do so at www.battlingthemonster.com.  She provides her experience and information as a MS fighter.

Next post:  Be thankful.

Thank you for reading.

-Brent

Reject Defeat

The MS crutch

We quickly discovered after Jenn started telling people that she has MS that others would use MS as crutch for anything that is going on.  For instance, Jenn got a cold.  Just a regular runny nose, cough feel like hot garbage cold.  People would say "it must be the MS causing it".  My response was "no, it's just a cold MS has nothing to do with it".  I found that people would often just jump to the conclusion that MS was the root cause of anything wrong with Jenn.  For the record these are just my observations and since I am not a doctor this should be taken as medical advice in any way.  Do we ever really know all the time if MS has a roll in it?  I don't know.  It certainly can but that also doesn't mean that it always does.

The general lack of education by many about MS leads people to make conclusions.  Part of my goal about blogging about MS is to encourage people to get educated on it.  MS awareness is critical for the MS fighters and their families, friends, employers and so on.  For the number of people with MS the lack of awareness is mind blowing.  I am going to expand on this in greater depth in another blog post.

To me I see the MS crutch as a big deal.  For the MS fighter they must determine early on if they are going use the crutch and put almost everything on MS or use it as an opportunity to educate people.  Because MS is so unpredictable and affects each person differently it would be easy for an MS fighter to say "it's because of my MS" as a crutch for anything that is happening to that person.  Personally, I feel that is a very slippery slop.  By giving themselves an MS "hallpass" to excuse away everything it takes the educational opportunity away and likely takes some of fight out of the MS fighter because it's easy to just blame MS.

Jenn has a very analytic mind.  She uses it with her MS fight.  She has never blamed MS for everything and at times has seemed to go too far the other way in saying that MS had nothing to do with it when it most likely did.  I ask a lot of questions to Jenn about her MS.  If something is going wrong and appears to be more "off" than if I had that issue I ask questions because I do believe that MS is a part of the issue.  It can be a razor thin line at times and sometimes needed to go all the way through it and reflect upon it and to see if we believed that MS had its nasty little hand in it.

I have found it encouraging throughout the years and the many conversations I have had with MS fighters that most do not use their MS as a crutch.  Most of the MS fighters I have talked to really only acknowledge the involvement of MS when the doctor says so.  Which to me says that they are fighting MS so hard that they want to give as little acknowledgement to MS as possible.  I have also met a few that blame MS for everything.  My impression of the people that blame MS for everything is that if they didn't every have MS they would pick something else to blame for everything.  It is just the path they have chosen.  

I feel blessed that Jenn doesn't blame MS for everything and have the "woe is me" attitude.  To me the "woe is me" attitude is giving the MS the power and if you tell your body that you have thrown in the towel the MS will take over. Now, with that said that doesn't mean that MS fighters always have the "I am going kick its butt" attitude.  One of the biggest fights for an MS fighter is depression.  It happens and it will continue to happen.  It happens to Jenn.  She feels guilty when she gets depressed.  I always tell her "it's okay.  Your body is at war against itself and war is hell and there are going to be times that you feel blue". For lack of a better term it's like flushing a toilet.  Your are getting rid of stuff.  

 In closing I know that MS has the ability to "pop up" in so many different ways and at different times and for unknown periods of time.  That is a lot for anyone to deal with.  How you deal with it is a very personal choice and one I hope each person chooses to fight MS and not use it as a crutch for everything.

My MS fighting wife has her own blog that I would encourage you to read.  Her blog is based on her fight with MS and what she experiences in her fight with MS.  You can check it out here www.battlingthemonster.com 

If you have questions or comments that you don't want everyone to see you are always welcome to email them to me at info@msfightclub.com.  

Next post: Who supports you in your MS battle?

Thanks for reading.

-Brent

Oh Avonex, why is your needle so big?

After trying a few internet based solutions that did not produce any results her neurologist prescribed her Avonex. This was a big deal in more ways than one.  At the time Avonex is a once a week intramuscular shot.  Since this was pretty early to + Avonex coming to the market there were no self-injectors and the medicine came in 2 parts.  Part 1 was a small pill and part 2 was the vile to drop the pill into and then once dissolved you load the syringe.

At this time I have never given anyone a shot of anything and I knew nothing on how to do it.  I have only received shots.  As a part of the Avonex program they sent a registered nurse to our house to show us how to do the shot.  I was very thankful they had this program because I probably would have screwed it up.

The nurse calls to make the day and time to come by.  She requests we have 2 or 3 oranges available to practice shots on.  I came to learn that oranges resemble human skin for this purpose.  The nurse arrives on schedule and we gather around the our kitchen table.  At this point neither one of us have seen Avonex inject materials.  When she pulled out the needle and syringe I thought it was a joke, kind of a "ice breaker" to relieve stress we have about the shot.  Nope.  It WAS the shot.  The needle looked as big as a Javelin to me.  I had never received an intramuscular injection and had never seen a needle that size.

My first thought when she said this was the needle was "I can't do this".  My mind was racing to find a solution.  Maybe they could have a nurse come by once a week and administer it.  Maybe there is a pill form coming soon.  All I knew was that I didn't to take this Javalin sized need and stick it in my wife!  Also adding to this equation was the following math problem: Jenn + any kind of shot = pass out or very sick to her stomach.  All I could see in my head was sticking her with this needle, she passes out or possible gets sick and repeat once a week.

I did settle down a bit after practicing on the orange and the nurse directing me.  This was the only lesson we were going to get.  Next up, it's go time!  We decided to do the shots on Friday evening right before going to bed.  At the time Avonex had a side effect that produced "flu like symtoms" and we thought doing it at night you could hopefully sleep through the side effects.

The first shot night is upon us.  I was very nervous.  However, I knew that I could not show it or admit it.  Who wants to get an intramuscular shot from a nervous and unconfident person?  A word of advice for care partners:  when given a tough task to help your MS fighter act as confident as possible.  As the old adage says "fake it until you make it".  Confidence will come and nerves will settle.  

It took a few times of administering the Avonex shot to get comfortable but once I did it became very routine.  If you get faced with having to do a shot (daily or weekly) breath easy knowing it won't take long to get used to it.  Do make sure to move your inject spots or it will build up scar tissue very quickly and make the skin tough and more difficult to administer your shots.

Next post: The MS crutch.

Thanks for reading.

-Brent

Great, I got the seat next to the loopy lady.

Time for a quick break from the serious blog posts about MS.  This picture above is Cheri Oteri when she was Saturday Night Live and did a few skits as a over-medicated lady.  If you have not seen the SNL skits they are very funny.  In 2011 I won (be submitting an online entry) a trip to New York for 2.  Awesome, neither of us have been to NY and both of us have always wanted to go.  It was a quick 3 day trip.  They put us up in a boutique motel in downtown Manhattan.  We got to fly Jet Blue for the first time.  That was a treat.  Bigger seats, more leg room and most importantly a individual TV's mounted into the backs of the seats in front of us.  They also sent us off with 2 tickets for a private concert by MGMT in the Ed Sullivan theater.  The motel was a few block away from Times Square and Central Park.  Needless to say 3 days in NYC is not nearly enough.

Our Pedicab ride through Central Park.

The whole trip was great.  We enjoyed real NY pizza (which did live up to all the hype), we "won" tickets to see a taping of the Late Night with David Letterman show and took a fantastic Pedicab ride through Central Park.  We want to go back and spend a couple of weeks and see all that we can see.

After the quick 3 days we are on our way home.  We check in at the airport and get our tickets.  The flight was sold out and they could not seat us together.  Jenn sat over the aisle and one row back in the middle seat.  I also got a middle seat.  I lucked out and both people seated on either side of me where great.  Not such good luck for Jenn.

I see this older women walking down the aisle towards us.  She is wearing way too much makeup and let's just say her outfit was a mishmash of stuff.  This was Jenn's neighbor for the flight home.  It didn't take her new neighbor long to get into crazy mode.

Before the flight took off this lady was in her carry on bag popping a couple different pills.  She could not sit still.  Up and down out of her seat and into and out of her carry on luggage.  When it came time to take off I overheard the airline staff asking her to sit down and buckle up.  I looked back to see what was going on and this lady had a "death grip" on the tops of the seats on either side of the aisle.  He legs were spread apart from aisle to aisle.  She looked like she was bracing for I don't know what.  After a lot of coaching she finally sat down and buckled up.

Once the plane was in the air she immediately gets 2 cocktails and gets into her carry on luggage and starts popping more pills this time using cocktails to take them down with.  I am curious by nature about human behavior and this was fascinating me.  Jenn on the other hand was simply annoyed.  Then the pills and booze kicked in.

She was still in and out of her seat and for some reason she had a plastic container of bird seed she pulled out of her bag and proceeds to open it and spill it all over the floor.  She is now mumbling and the airline staff has surrounded her asking her questions.  She didn't know her name or where she was.  Then over the loudspeaker the pilot asks "is there a doctor on board?".  There was and he proceeded to come back and see what was going on.

The doctor asks her what medicines she has taken and she did not know.  By this time you could almost see her eyes spinning she was gooooone.  The doctor pulls out all the prescription bottles out of her carry on bag.  Appeared to be about 20 of them.  He starts reading the labels and who the prescribing doctor was.  He quickly discovers she was seeing multiple doctors and getting all kinds of different medications.  Not knowing which ones she has taken he recommends that they put her on oxygen to see if that will settle her down.

A couple minutes later the pilot announces we are making an emergency landing in Ohio.  We were only about a quarter of the way on flight from NY to Portland, OR.  We land and a medical team boards to take her to a local hospital.  The oxygen had settled her down and now she was pretty alert and was refusing to leave the plane.  After a small battle about leaving she gives in and away goes over-medicated lady.

Though it was not the ideal deal way for this to happen......this did present me with and empty seat next to Jenn.  I got to move seats and enjoy the rest of the flight with my wife.  I guess if there is a moral to this story try to get to your gate early if the flight is sold out so you can sit next to people you want to.

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

Thanks for reading.

-Brent

Reject Defeat