We lost a great advocate for MS.

Portland Trailblazer fan-favorite and MS advocate Jerome Kersey passed away February 18, 2015. The cause of his death is unknown at the of this post.  Hearing of the passing of Jerome Kersey made me very sad.  I did not have a chance to meet him personally.  I did see him on several occasions out and about in Portland.  He regularly attended MS events and supported his wife Teri is battle with MS.  

This article from August of 2014 gives a better perspective on his role as care partner:

www.columbian.com/news/2014/aug/07/ex-blazer-lends-his-voice-to-wifes-battle-wit/ 

Being from the Portland area and knowing the community I know the community will be there to provide love and support to Teri and her children.  

I always loved the now retired Bill Schonely's Trailblazers broadcaster's call of "mercy mercy Jerome Kersey" when Jerome made a great play.

I know we'll be praying for his family to find peace in time sadness.

Thank for reading.

-Brent

Reject Defeat

Take charge of your MS health!

Does the American healthcare system have your best interest?  I say no, it does not.  I think the American health care system is simply a disease management system. There is so much money made in disease management why cure anything?  For instance Jenn uses Copaxone for her MS.  Without insurance the cost for a one month supply of Copaxone is $3,297!!!  That's $39,564 per year with a crushing $108.39 a day!  There are not many people who can pay that kind of out of pocket cost.  From the business side of this I understand there is research and development, trials, licenses and so on that costs a lot to bring it to market.  But $3,297 a month?  With that being said.....most (if not all of them) do have financial assistance programs if you need it. Below is list of some of the most common MS treatment drugs and their financial assistance program:.

• Copaxone:://www.copaxone.com/shared-solutions/copaxone-co-pay 
• Avonex: http://www.avonex.com/avonex-cost-financial-services.xml
• Rebif: http://www.rebif.com/pages/affordable-access/patient_assistance_program
• Tysabri: http://www.tysabri.com/tysabri-cost-and-support.xml
• Betaseron: https://www.betaseron.com/betaplus/affordability

Don't get me wrong.....doctors and medicine are absolutely necessary and can be a great thing.  There are a lot of fantastic doctors who really want the best for their patients.  The problem can be the system itself.  Let me ask you this....how long do you wait in the lobby to see you neurologist?  When Jenn was going to her first neurologist (who we both like) we waited up to 3 hours after the scheduled appointment time.  And we were stuck because the wait time to get another appointment was normally months.  We finally made the discovery that he triple booked his appointments.  Our work around was to call a couple hours ahead and ask how far behind he was and go in later.  Once we got in to see him it seemed like just seconds and he was off to the next patient.  This is how it works.  Almost every clinic gives their doctors 7 minutes with regular patients.  Intake appointments are much longer and the doctor most often schedules full days of intake appointments.  To make sure we got the most out of our appointments I would right down questions we had and if there where forms he needed to sign I would fill in everything for him except his signature.  Otherwise we had to leave it there to be completed at a later time.........a much later time most often.  It wasn't ideal but it worked.

The other portion of the healthcare system is pharmaceuticals. Pharmaceutical companies have armies of lobbyists.  The pharmaceutical industry spends the most each year to influence our lawmakers, forking over a total of $2.6 billion on lobbying activities from 1998 through 2012.  That is by far the most of all lobbyists. To get some perspective on just how big that number is, consider that oil and gas companies and their trade associations spent $1.4 billion lobbying Congress over the same time frame while the defense and aerospace industry spent $662 million.  Now you see why there is a prescription for everything.  These companies make mega money off of people being sick.

Here's the real danger in it. You can be over medicated very quickly.  We found this out first hand.  When's Jenn's health was really down she ended up with a pharmacy in our cupboard.  She had pills for tremors, fatigue, vertigo, sleep aid and so on.  Every neurology appointment we left with a fistful of prescriptions.  Jenn topped out at 14 different medicines a day.  One night while having dinner I looked across the table at her and realized her eyes were ridiculously glossy and she looked dazed.  I asked her how she was feeling and she said "ok, I guess....I just feel pretty numb".  Right then it really hit home how over medicated she was. We took out all of her prescriptions and reviewed them.  Holly crap!  The side effects all counteracted one another.  The one to treat vertigo makes you tired and the one to treat fatigue makes you dizzy and so on.  It was shocking.  Our mistake was assuming the doctor was aware of the side effects of each one and would prescribe ones that played well with the others.  Not the case at all.  That night we flushed everything down the toilet and just kept the Copaxone.  After the drugs left her system she was feeling a ton better.  Do yourself a huge favor and really analyze any prescriptions to prevent over medicating yourself and doing you more harm than good.  More meds does not equal better quality of life.

Pharmaceuticals are needed and they are a good thing.  You dictate how you treat your MS and let your doctor know what and how you are doing and they should provide care that compliments what you are doing.  Take charge of your MS treatment and know everything you are taking! 

Next post: The National MS Society is your friend.

Thanks for reading.

-Brent

Reject Defeat

From a wheelchair to walking.

Being in a wheelchair is no joke.  The wheelchair represents the loss of freedom to walk on your own power.  That is huge.  The mental and emotional tolls are tremendous.  For the MS fighter the loss of walking (even assisted walking using a cane or walker) is devastating.  By the time the MS fighter has made it to the point of being in a wheelchair they have already dealt with many losses of freedom and had to deal with them mentally and emotionally.  The unknowns become much greater and sometimes grimmer.  Like I said being in wheelchair is no joke and should be taken very seriously by the MS fighter and their care partner/support people.

For the care partner the wheelchair is a game changer.  There is a lot of planning.  Is this place or that place wheelchair accessible.  Sometimes requiring a quick trip ahead of time to find out.  Learning how to support your MS fighter during this change.  Having a vehicle that can accommodate a wheelchair and lugging it in and out of the vehicle.  Wondering if they are going to ever walk again or maybe this is an indicator that they their health is going to continue to get worse.  The emotional toll of seeing the person you love and care for struggle so mightily both physically and emotional is very tough.

I know all of these things very well because we have been through them.  If you think once you are in a wheelchair it is a life sentence I hope to break that thinking for you.  I have seen it.  Jenn was in a wheelchair for 5 years and has been out of it for years now.

Jenn did the "progression" of cane to walker and then to a wheelchair.  This progression was over a period of a few years.  Just like when she got her cane and walker she wanted nothing to do with the wheelchair.  She knew it would bring relief and allow her to go places and not have to worry about "gassing out" in 15 minutes.  Like the cane and walker she got used to it and came to terms that it was a good thing.  I did encourage her to give the wheelchair some personality and she did.  At Christmas she would put garland in  the spokes and a ribbon in the middle.  We looked into small battery operated lights but did not end up doing it.  She decided to share her love of cats to world by putting cat stickers on the backside of the back rest portion.

One thing didn't change.  She came to terms with the wheelchair but did not accept it.  Big difference.  By coming to terms with it she was agreeing that the wheelchair did serve a useful purpose and wasn't going to give anymore push back on using it.  She refused to accept because by accepting it she felt that she had given her MonSter the power and accepted defeat.  She was determined to do whatever it took to get out of the wheelchair and even if it meant going to using a cane or a walker.

Her quest to get out of the wheelchair had her hyper-focused to find a solution.  She knew that some how or some way there was something she could do to get her out of it.  One change we made was going to a naturopathic doctor.  She put Jenn on a really heavy vitamin routine. The vitamins did not really seem to do anything for her MS but her hair and nails grew at a freakish rate.

The real breakthrough came after Jenn had read some studies on the benefits of vitamin B-12 can have for MS fighters.  She took this information to her naturopath and asked for her thoughts and she believed it was worth a try and wrote her a prescription for B-12.  I was the one administering the subcutaneous shots twice a week.  She very quickly started seeing improvements.   It looked like the B-12 was really working.

Jenn started feeling less tingling and numbness, the thought to speech process was improving, speech became clearer, eyesight was getting better and most importantly her leg strength and balance were improving.  After about a month she had ditched the wheelchair and was using her walker.  Her stamina wasn't great but it too was improving.  After a few more weeks she went from her walker to her cane to unassisted.  Praise God.  It was unbelievable to witness this transformation.  She had not driven a vehicle in years and she was once again able to get behind the wheel again.

To this day Jenn is walking without assitance and I still give her a B-12 shot once a week.  Given the nature of MS we have no idea if she will have to use her cane, walker or wheelchair.  We still have all 3 and they sit in our garage collecting dust and for Jenn they serve as a consistent reminder to never take walking unassisted for granted.

I would love to tell all of the MS fighters to take B-12 injections and you will be better but that was be very reckless on my part.  In Jenn's case B-12 ended up being something that really works for her.  I do truly believe that for every MS fighter there is something or a combination of things that will provide great help.  Since MS is so individual it is a trial and error process.  Just know it can happen.

One thing I forgot to mention.  Wheelchairs are expensive.  Jenn's was a very basic manual wheelchair.  In our case insurance did not cover it and we simply didn't have the money to purchase one.  I did make a call to our chapter of the National MS Society and they provided us with a connection that we used and were able to get the wheelchair at a much reduced cost.  If you need to check with your local chapter.  If you are not sure how to contact your local chapter go to www.nationalmssociety.org and click on the "Find a Chapter" link at the top.

The reaction to her recovery was overwhelming to her.  For years we participated in the MS Walk and we would see a lot of the same people year after year.  They saw her go from using a cane, to a walker and then a wheelchair.  The next MS Walk she showed up with no cane, walker or wheelchair and she told me straight up "I am walking it this year.  I don't care how tired I am after I am walking".  It really hit us when we showed up to the walk and the other MS fighters saw her walking unassisted.  She had countless people coming to her crying tears of joy and hope.  They all wanted to know what she did to accomplish this.  Jenn was overwhelmed with this unexpected attention.  She is someone who does not like being in the spotlight and does not look for it.

At one point she turned to and asked "why me?  I am nobody special".  At that very point it hit me.  I looked her and said "you have a testimony to share with people.  You represent hope and people have seen it first hand and they are inspired by it".  She was not able to complete the full route of the MS Walk that year and had the shuttle bring her back.  When she got back I asked her how she was feeling and she said "I'm exhausted, but I wouldn't trade it for anything".

Next post: The National MS Society is your friend.

Thanks for reading,

-Brent

Reject Defeat

Merry Christmas

Every year Jenn and I watch A Charlie Brown Christmas.  It never fails that every year we find something new/different to take from it.  This show was made in 1965 and is so timeless.  The one thing that really stood out to me this time was commercialism of Christmas vs. the real reason for Christmas.  We say every year "wow, Christmas seems more commercialized this year".  Then I see the Charlie Brown being frustrated that his friends are all about how many presents they can get and that they are the "right" ones.  Even in 1965 Christmas was busy with most of the things we see today.  However, at the end all the kids realize spending time with each other was more important than gifts.

Most MS fighters I know could care less about material items.  They value relationships.  Material items come and go but good relationships last a lifetime and if you have those types of relationships don't let them go.  When you have good relationships you don't need many.  In fact if you have 1 solid relationship you are blessed.  Hopefully you get the opportunity to spend some time during Christmas with them.

As a MS fighter or a care partner you spend all year battling MS and all the garbage it brings.  One thing Jenn and I learned was to slow down, relax and enjoy family, friends, movies and of course great food.  It's easy to caught up in the hype and the hustle.  Christmas really is special and for us slowing down, relaxing and taking in everything has been a blessing.  Not only do we get to really savor the moments but MS issues that can (and often do) pop up from all the stress and hustling around are not an issue.

For Jenn and I we celebrate Christmas for the birth of Jesus.  We say "Merry Christmas" to everyone (even when they say Happy Holidays).  We love Christmas, the reason for Christmas and being able to put health issues aside as much as possible and simply enjoy.  We hope you and your family can do the same.

Next post:  From a wheelchair to walking.

Merry Christmas.

-Brent

Do you have Hope or Faith for an MS cure?

Do you have hope or faith there will be a cure for MS?  Does this seem like an odd question?  Maybe you say "I have both".  It's kind of a one or the other choice.  Let me explain.  Marian-Websters dictionary provides the following definitions for both.  Hope: a feeling of expectation and desire for a certain thing to happen.  Faith: complete trust or confidence in someone or something.  Does reading the two definitions change your view on hope and faith?

It seems to me that as a society we have made both hope and faith mean the same thing.  That's a mistake. Both have a great purpose but they need to be separated from each other.  I remember as kid at Christmas I hoped that Santa would bring me a certain toy(s).  Did I have Faith that Santa was going to bring me them?  No, I figured it was 50/50 shot and sometimes far less because I really made some of my toy requests a bit outrageous and I would put it in the "doesn't hurt to ask" category.  

Part of the mental and emotional battle with MS is to have both hope and faith.  If you don't have either one you have sentenced yourself to a mental and emotional jail that MS is the warden.  Not good.  Having hope and faith everyday is fuel for better health.  Not only does this help you it also helps your care partner or support people.  When people know you are hopeful for a cure and that you have faith that things will get better it makes it easier for them.

Having hope and faith will not be easy all the time.  It will challenge you.  When you are in the middle of an MS storm it can look easier to lose hope and faith than to gain it.  This is time when you dig your feet in, ball up your fists and shout "no way, you are NOT taking this from me".  You do not have control of what MS does to you physically.  You do have control of your hope and faith and MS cannot take it away.  The only way you lose it is to give it up.

Jenn has been through some big battles.  She always had faith that things would get better.  She would say that it she did not to get 100% better but greatly improved.  I know big part of that was having faith that it was going to get better.  Don't ever give up hope or faith!

Next post: Merry Christmas

Thanks for reading,

-Brent

Reject Defeat

Holidays + Stress = MS nightmare!

The holidays can be a stressful time.  Worrying about planning, cooking, traveling and even worrying that your favorite uncle is going to end up passed out in the bushes again because he drank too much.  Stress + MS = bad news!  I know for Jenn stress makes her MS pop up to say "hello".  This did happen for her at the holidays.  For a few years I was confident of two things during the holidays.  One, Jenn's dad was going to watch the movie A Christmas Story a minimum of three time and second would be Jenn would get stressed out and her MS would give her troubles because of it.

I have often wondered how the Holiday's have seemingly become way more work and stress than they are enjoyable.  Maybe it's people competing to keep up with relatives or others around them with presents, cooking, decorating or travel.  Whatever it is obvious people get pretty worked up about holidays.  It's sad to me that holidays create this much stress for some.  It's almost like a wedding.  Everyone has to be "performing" at a high level.  It can be a total performance trap.  The real trap is that you can never live up to performance you want.  

A few years ago Jenn was particularly stressed out during the holidays.  Her MS started giving her troubles because of it.  After that holiday season I sat down with her and asked "why do you put so much stress on yourself during the holidays?".  She said "she was concerned that her MS was going to be a focal point and she wanted to do everything she could to mask or redirect it".  I said "It's not the focal point, the stress is murder for your MS and please quit doing it".  

When she made the decision to not stress during the holidays a couple things happened.  She looked forward to them and now enjoyed them.  Her holiday MS flare ups are gone.

Here are some tips I found to help avoid Holiday stress.

Notice the physical signs that you are suffering from stress. Having MS you are likely very aware of how your body is doing.  Some signs are:  Exhaustion - most MS fighters already battle this and trying to go above and beyond your capacity is going to compound it.  It is not something you cab fix with a night of proper sleep. You know the tasks on tasks you volunteer for have consequences, but you are not able to stop!

Notice the mental signs that you are suffering from stress. 

Irritability: Everything irritates you, and you do not know why. Unfortunately, this means you've forgotten to see the charm of your life, and you've started imagining that work's getting harder and your kids more demanding, forgetting the joys and only seeing the hassles.

Lack of resilience: Your boss criticizes one small detail in the paper you have spent months getting ready to free up time for the holiday break. You fall apart, sobbing. She looks at you like you are from outer space, and you begin to think she has a point.

Negative feelings: You are already planning to be disappointed by Christmas dinner or the New Year's party. Every other year has been a washout, so this one will be too. Oh, why even try? you start to wonder. You are setting yourself up for disappointment.

Feeling down, feeling the blues, or depressed: An inability to shake off the blues is a warning sign that stressors are getting to you. This is one step removed from negative feelings, which will also accompany feeling down but may also involved feeling like giving up.

Take a break. 

This time of year can fluster even the most unflappable.  If you are responsible for the majority of holiday preparations and planning you are under a lot of pressure.  Despite the fun moments you sometimes share, it is like your are overloaded.  If you have overlooked your own needs amid this; it is not surprising that you are feeling stressed.  Some of the things you might benefit from include:

Blocking out several hours every few days for rest. This is you-time and it does not involve flipping through magazines planning Christmas lunch or New Year's Eve cocktails. This is time to shut your eyes and put your feet up. Do anything other than what is expected of you.

Treating yourself to a massage or a spa visit. Amid all the chaos, seek some serenity. (Men, you are allowed to go to the spa, too, although manicures or pedicures are strictly optional.)

Taking time out to chat with a friend or two. Share your ideas for making it through the holiday season with greater ease. You might even help one another with babysitting arrangements or sharing tasks.

Visit your place of worship or spiritual spot more often than usual. Take time to pray, meditate or sit in a state of silence and peace. Allow the peacefulness to wash over you and remember the spirit of the season.

Eat well.

Do not devastate your energy levels by starving yourself over the holiday season.  Stay away from sugary, fatty, and unhealthy snacks that can take the place of healthier food.  It is fine to indulge in moderation but do not use it as an excuse to stop eating well.  Changing the way you eat as a reaction to the stress of the holiday season might seem like a way to make you feel better, but this can lead to weight gain. This can cause more stress and hurl you into another vicious cycle and a possible MS flare-up.  Eat three healthy meals a day and keep most of your snacks healthy. Focus especially on vegetables and proteins. Indulging occasionally is fine.  Eating less? Some people respond to stress by not eating altogether. This is hard on the body as well, draining you of much-needed energy. Indeed, you might take in so few calories that you cannot maintain your energy during the day, which is not helpful to your health.

Watch your alcohol intake. 

Alcohol is often relied upon to ease stress during the holidays.  Drinking more than usual and increasing frequency can more often increase stress, cause weight gain and cloud your judgement.

For events such as New Year's Eve, let yourself have a glass or two of the best wine or sparkling drinks instead of drinking to get drunk. You deserve the far better experience.  At the same time, let yourself unwind after a busy day. Have a glass of wine with dinner, or a hot toddy an hour or two before bed. If it helps you unwind, go for it.

Stop imagining that the holiday season is about being "perfect". 

A lot of stress you put yourself through comes from trying to match the perfect standard shown in magazines, TV, and other media. Marking professionals use perfection in images to create intrigue and demand not reality.  Don't pin your happiness on the success of your holidays. Your happiness should be bigger than just the holidays. Be thankful for the family that you do have, the opportunities you have been given, and the future you can look forward to. Put things into perspective.  Strive to perfect some duties and expectations, but don't expect perfection. Your polar bear cookies might be misshapen, and your chicken overcooked, but it is the thought that count.  This is where delegation is vital; delegation means shared responsibility for how everything turns out. Seek out help where necessary. This means letting go of some of your control, which is a great thing.

For Jenn and I our focus at Christmas is the birth of Jesus.  With this focus we are at peace and enjoy our time together with family and friends.  We hope you can too.

Next post: Do you have Hope or Faith for an MS cure?

Thanks for reading.

-Brent

Reject Defeat

Are you trying to fool people about your MS?

When I was a child I remember hide-and-go-seek as game you could play with just about anyone.  Some kids picked ridiculously good hiding spots and others ridiculously easy ones. When I played I always wanted my hiding spot to be good but not too good.  I wanted the thrill of the possibility of being found.  I could have went into the attic and NOBODY would have found me but that wasn't fun to me.  As am adult hide-and-go-seek is not something I want to participate in.  However, most MS'er's have or current do with their MS.  Don't kid yourself you know you have.  For example you have been planning on going to event with your spouse or family but you don't feel good...at all but you tell them you feel better than you actually do.

Jenn has tried this with me.  Most of the time I would catch it and call her on it.  I get it, you don't want to look like a whiner, weak or feel like you're being a burden by saying how you really feel.  I have 3 words for you.  Get over it.  Sounds harsh but it has to be.  Yes, you have good intentions by playing the MS hide-and-go-seek game but it will come back to bite you.  The fact is you are going to miss things or have them interrupted or shortened because of your MS.  It sucks but it is something that is a part of managing your MS both physically and mentally.

When I ask Jenn how she is feeling I do it for a couple of reasons.  First, I care how she is feeling and if there is something going on that I can help with then I can do something.  Second is that I notice that she is "off" and I want know what it is so I can help (if I can).  When I noticed she was "off" and I asked her how she was feeling and she would be reply "I'm doing okay".  I would respond with "really.....because I can see that everything is not "okay".  Now can you please tell me what is going on?".  At this point she would spill the beans on what was going on.

I don't ask how she's doing to be a pest or make MS and her health the focal point of everything.  I genuinely want to know.  I also mentally mark down any patterns or new things as they happened.  It helps me as a care partner to recognize health patterns and when new or different things come up.

Something you may not have thought about when you telling people you feel better than you do.  It creates a pattern of deception that will have your care partner (and others) questioning what you are saying about your health.  This is not good for anyone and can be a very slippery slope.  It can get to a point that everything (not just health) you are saying is questioned is questioned if it is truthful.

The people around you want the best for you and even if it means altering a plan be upfront about how you are feeling.  If you feel that someone doesn't understand why then use that opportunity to give them a quick education on why.  Having to be upfront and truthful about how you are feeling is not easy.  The last thing you want is to have your MS get in the way of anything.  Unfortunately it's going to but trust me as a care partner we are prepared to make adjustments and go with the flow.

Next post: Holidays + Stress = MS nightmare!

Thanks for reading.

-Brent

Reject Defeat

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

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

In the beginning...Parts1&2 from a care partner's perspective

As a care partner I am given a different set of challenges when it comes to MS.  I know each MS fighter has a different set of challenges and a different way of handling them.  Below are my thoughts, emotions and actions when Jenn started having issues with her MS.  After my last post I received a great suggestion from Bonnie.  I had been using the phrase caregiver and she said they use care partner.  I was never to wild about caregiver and care partner really hits the mark and I will be using that going forward.

When Jenn and I got married I knew almost nothing about MS.  I knew she had it and that it could pop up at any time and cause problems.  She was not symptomatic when we got married.  I was like "you have MS?  You don't look sick"....one of the MS fighters most hated phrases.  At that time Jenn knew a fair amount about MS but since she wasn't having any problems with it she didn't fully educate herself on it.  I had no idea if or when she would have any complications from her MS.  I figured we should just take advantage of this time in case things change.

When she first started having issues that is when I started really questioning things.  I thought about all the "what if's" and pretty much scared myself to death.  Then I realized my worrying about the "what if's" was a waste of my time and that I had to let that go and be here for Jenn now.  Though she didn't say much about it I could see that she was scared.  At this point I felt it was just best to "be there" for her.  If she wants to talk about great and if not that's fine too.  I didn't bring it up much.  When I did it was to get a question or two answered that I had.  I always carefully chose my time to talk and how I approached it.  It was always premeditated.

As Jenn's care partner one of my biggest challenges was to watch the person you love struggle and there is nothing I could do.  I can't fix it or cure it.  As a guy my instinct is to fix problems it's just hardwired into me.  Here was a problem I couldn't fix.  I had to accept it and find the best way possible to be a great care partner.  Since there is no rule book or guidelines on being a care partner I had to figure it out on my own.  Challenge accepted.  Since Jenn is the one doing the fighting I made myself her corner man.  In boxing the corner man towels them off between rounds and cheers them on in their fight.  I wanted to be the best corner man ever.

I never let being a care partner get me down or depressed.  I have always had people comment saying "I don't know how you do it?".  For me it's not that hard.  You have to commit to being the MS fighters biggest advocate, support and leader.  I am nothing special.  There are thousands of care partners out there dealing with more than I ever have and they do it like a champion.  My goal has always been to treat her the way I would want to be treated if I was the one fighting MS.

Like most newly married couples the discussion of having children came up.  This was a particularly difficult area.  Upon doing research we realized that having a child is horrible for MS.  Most cases we read the women said they "never felt better" while being pregnant.  Maybe it was hormones?  After having the child is when the issues came up.  We knew someone who had (she has since passed) a child while fighting MS.  Before having her baby she was doing great with her MS and worked full time and was virtually symptom free.  Five weeks after she had her baby she was in a wheelchair and never got out of it.  I thought to myself that would be awful to take care of baby and your spouse at the same time.

After a lot of discussion and some tears shed we made the choice not to have children.  It was very hard on Jenn and over the years she has felt guilty that her health was the reason we didn't start of family.  We did take it upon ourselves to spoil our friends and families kids and at Christmas we started a tradition of not buying gifts for each other but finding a "Giving Tree" and pulling a bunch of tags off of it for children who might not have received anything for Christmas.  We still keep that tradition and we have so much fun shopping for the kids.

From my standpoint what makes MS so difficult it that it has so many ways to effect you and there is no telling how long one thing will last or how severe it will get.  Of course there is the physical aspect of MS and that is what people see.  To me that is not the most difficult thing to deal with.  I would say the most difficult things to deal with is everything you can't see.  It's things like guilt and depression that really pack a knockout punch.  If you suffer from fatigue and have walking issues you can for the most part plan around them.  Not with guilt and depression they just linger around and constantly poke at you.  To stay tough mentally is huge.  Even when your health is getting worse and worse staying mentally strong is a challenge.

Jenn has never played the role of a victim.  Even in her worst times she would point out to me "at least I don't have something terminal and there are always people in way worse situations than me".  I have always loved this about her attitude.  She really is a "roll up your selves" and get to work person.  I have met others who are not as mentally tough and they play the role of victim all the time and are willing to tell anyone who will listen.  I am not judging but just pointing this out.  I have no idea what would happen to me mentally and emotionally if I was the fighting MS.

Another important thing I discovered for myself was to always be flexible.  Even with the best of planning stuff happens and I am always prepared to change plans to accommodate the situation.  It may be that we scheduled to go somewhere or meet up with friends and dizziness hits or massive fatigue.  At that point we just change plans.  I never feel cheated that we didn't do whatever we had planned.  Jenn never planned for the stuff to happen and we just make the best of the situations.

As I pointed out in my first blog posting that being a care partner is not for the faint of heart.  It is not always easy and can be very tiring but I will never stop striving to do my best as Jenn's care partner.  I found that you have to be great at juggling schedules, tasks and staying flexible.  Even though I do not have MS I feel very much a part of the MS community I have tremendous respect for anyone fighting MS and care partners that take their role seriously provide their fighter with love and support.   The most helpful thing I have done for myself as a care partner is to realize nobody can care for Jenn better than God and I turn to Him for guidance and wisdom.

The next post will be In the beginning part 3: Good bye to employment.

Thanks for reading.

-Brent

Reject Defeat