No more shots. . . . Maybe someday!

I walked into my neurologist appointment today with one this on my mind.

"When can I stop giving myself 

these damn shots?"

Dr. Masood asked me how I was feeling.  I told him I feel pretty good.  I get tired a lot, by memory is still not what it used to be and I am sick of Copaxone!  He asked me why and I told him 

IT HURTS!!

 

He said us, being humans, forget how bad an exacerbation is.  Time does this to us and we forget how

scary it is when our MS flare's up.  I have to take that into consideration when it comes to switching treatment options.  He reminded me that I could wake up tomorrow and the MS could attack my spinal cord and I would be paralyzed from the waist down.  I still wasn't convinced.  I have been healthy overall and I still want to be done with these shots.

 

He went on to say that he does not trust these new treatment options that are oral.  He said they are so new and so few of people that are opting for this treatment they are not really sure what it does to your body.  His concern is what they do to your white blood cells which he believes will one day lead to the big C, Cancer!  OK this got me a little concerned because cancer scares the crap out of me. 

He finally said insurance would not help me pay for another treatment when the current one that I am on it working for me.  Copaxone costs $45,000/year before insurance!!  The oral therapy costs $42,000/year which would have to come out of our pockets.  

That is when it hit me.  I am not switching over to the pills, not at this visit and probably not for a long time.  Time to buck up, go home and give myself another shot before bed.  I cant be too upset about this though.  I am thankful that I have this medicine that keeps me healthy and to be able to share moments like these with my family. . . 

 

 

 

Pictures

If you have ever been to my house you have seen the over abundance of photo albums. 

I love taking pictures and I always print them out.  I can’t stand just having them stored on my computer.  I need to have something that I can hold in my hand to look at.  When I pick my pictures up I always take the time to write on the back of them with who is in the picture, the kids’ age, where the picture was taken along with the date.  My mom has done this forever and I have always followed her lead.   



I always have my camera on me whenever we go on family outings to capture moments that I will cherish forever.  My kids have been so accustomed to me taking so many pictures they are trained with their smiles ready for me.  Every year over MEA weekend in October we take a long weekend and go to Duluth.  Last fall when we were up there the kids were throwing rocks into Lake Superior and I wanted Makayla to put her hat on because it was cold outside.  She either didn’t hear me or was ignoring me so I repeated her name a few times.

“Makayla.”

“Makayla!”

“MAKAYLA!”

She finally turned around and said in an annoyed 2 year old little voice,

“UGH! . . . Cheese!”

She thought I wanted to take her picture!

My memory is not what it used to be.  I can get by on my day to day life with post-it notes, reminders on my cell phone or my calendar at work or my amazing family, friends and co-workers that are always there to help me fill in the blanks.  I just got off the phone with my mom asking her if she remembered the story I told above.  I remember it was one of our kids that did it, but I wasn’t sure which one or when and where it happened.

There are other events in my life that I have no recollection of.  Some are big and some are little, but I wished I could get the memories back.   

My own childhood events

Traveling adventures

Reuben’s proposal

           
            Cute stories from our kids

I am so thankful that I have my camera so that I can document special moments in my life.  I will continue taking pictures and adding more photo albums to my collection.  If you see me with my camera indulge me and let me take your picture so I can have these memories with me forever!  

Who do you walk for?

After being diagnosed with Multiple Sclerosis in 2009 I went on medicine right away. I am thankful that there are so many treatment options that just a few years ago weren’t available. I wanted to be a part of this research to one day find a cure so I formed Susie’s Stars and started participating in MS Walk Twin Cities.

When I speak with people about participating in the MS walk they ask who I am walking for. I am walking for those who cannot walk anymore because of this disease. I am walking for their loved one that was recently diagnosed and is scared out of their mind like I was 4 years ago. I am walking because I am not sure how much longer I have to walk.

The name of our walk team is Susie's Stars and I am not just walking for myself, but for the millions of people that are diagnosed with Multiple Sclerosis around the world, the millions of Stars that have something in common with me!

The first year we participated in the walk was 2011 and we had 18 people walking with $1,296.50 raised for the National MS Society.

 

 

After doing the walk in 2011 I knew that this was going to be an annual tradition for our family. With more time to raise funds and get family and friends signed up for the walk in 2012, our team grew to 64 walkers and raised $4,439.00.

 

I hope one day to not have to do this walk. I pray for the day where I don’t need to raise money for Multiple Sclerosis because a cure has been found. Until that day comes, Susie’s Stars will continue to walk and raise awareness for MS. Our team in 2013 had 55 walkers and contributed over $5,800.00 to the National MS Society!

 

 

Excited for you to join us for MS Walk 2014!!

Fundraising Event 2013

I hosted a fundraising event on Saturday, April 20^th and it was a success!  We raised just over $2,000 and that is all going to the National MS Society. 

It was so nice to see everyone that came out to support me and everyone else that is in this fight against Multiple Sclerosis.  I had so many friends and family donate some great items for the silent auction and that was where we received the most money.  It is truly a blessing to have such generous and caring people in my life.









As I went around Angeno’s selling the tickets for the beer bust I was able to speak with people about Multiple Sclerosis and the effect that it has on me and my family.  The best part about sharing my story was hearing the stories of other people.  Some had loved ones that were diagnosed when there were no treatment options and they are now in a wheelchair with no use of their legs.  One man I spoke with had a wife that passed away after battling MS for many years. 

These stories both scare me and keep me hopeful at the same time.  It scares me to know that this could be my fate somewhere down the line.  However, my hope outweighs my fears.  There are so many treatment options out for those that are diagnosed with Multiple Sclerosis and we can live a healthy and happy life.  This is the reason why I work so hard to get people to open their wallets for the National MS Society and participate in the MS Walk.

One day we will have a cure for Multiple Sclerosis and that will really be a celebration!  

MS Awareness week 2013



 

This is the start of Multiple Sclerosis Awareness week.  MS is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease. (National MS Society web site)

 

There are four courses that this disease can take that vary from mild to moderate to severe.

 

     1)  Relapsing-Remitting MS (RRMS).  Newly diagnosed individuals are most commonly diagnosed with RRMS.  There is clearly a defined period of time where an individual has an attack or flare up followed by partial or complete recovery periods.

 

     2)  Primary-Progressive MS (PPMS).  This is when the person has worsening neurological function from the beginning and with no real relapse period of time.  Approximately 10% of of MS patients are diagnosed with PPMS.

 

     3)  Secondary-Progressive MS (SPMS).  This usually follows when a person with MS starts with RRMS, but then the disease worsens more steadily with no complete recovery period.  Before drug therapy became available 50% of people with RRMS developed this form of the disease within 10 years.  Data is not sufficient enough to tell if this time frame has been delayed.

 

     4)  Progressive-Relapsing MS (PRMS).  This is the rarest course that the disease can take and around 5% of those diagnosed with MS fall into this category.  When people are diagnosed with PRMS they steadily decline from the beginning and you can see clear worsening of neurological function with little or no recovery between relapses. 

 

Many have trouble imagining what their lives would be like without the ability to move, but I know the effects of MS personally.  I was diagnosed with MS is February 2009 and mine is still at the Relapsing-Remitting Stage.  I was told that research has come a long way over the years and that people are able to live full lives as long as they take care of themselves.   I made the decision right away to go on a preventative medication, Copaxone.   I was very nervous to start this treatment because the only way you can take it is to inject it into your body every day.   All I thought about was I have a husband and at the time we just had my son and I was going to do this to keep myself healthy.   I did go off of the treatment for about one year so we were able to have our daughter, but I have since gone back on the treatment and endure these injections every single evening.

 

Overall, MS had not had that big of an effect on my body. I forget, itch, go numb, drop things, stumble and get dizzy, but that is few and far between. I have triggers that bring these attacks on so I have learned to avoid those things.  I am hopeful that I will not be in that 50% of RRMS patients that progress into Secondary-Progressive MS.  The reason why I am so hopeful is because of events like MS Walk Twin Cities.  Every year in May thousands of people gather at Minnehaha Park in Minneapolis along with several other walk sites and raise money to help find a cure for MS.  The walk will take place on Sunday, May 5th, 2013 and I have formed a walk team, "Susie's Stars.  This will be our third year participating in the walk.

March 11th - March 17th is Multiple Sclerosis Awareness Week.  What can you do to help me raise awareness. . . .

WEAR ORANGE!!!

 

Tell people about what MS is and the effect it has on those suffering from it.

 

Join our walk team, Susie's Stars, and walk with us on Sunday, May 5th.

 

Make a tax deductible donation to the National MS Society through Susie's Stars walk page.

 

Donate silent auction items for the fundraising event that I will be hosting on April 20th, (details to follow). 

 

Join us at our fundraising event on April 20th at Angeno's Pizza/Zimmerman Bar & Grill. 

 

Here is the link for Susie's Stars MS Walk team. . .

 

Click here to join our walk team or to make your tax deductible donation towards Susie's Stars!

 

 



My favorite thing

I am a woman in my early 30's with a wonderful family, a great career and amazing friends.  You would think my favorite thing is. . . .

A piece of jewelry from my husband.

A nice pair of shoes.

 

A picture my kids have colored for me.

 

A killer business suit. 

A good book.

 

A picture that I took with my mom while we were on vacation in San Francisco.

 

My wedding picture.

 

All of these things I hold very close to my heart of course, but my favorite thing right now is this. . .

 

 

When I give myself the daily Copaxone injection, this is my saving grace, my squishy ice pack.  It is flexible and not hard so I can wrap it around my arms which is usually the place I need it the most.  I keep it in the freezer and as soon as that coldness hits my skin the burning from the medicine starts to subside. 

The other night Reuben gave me the shot in my arm and it was PERFECT!!!  I barely felt the needle go in and out, it was amazing.  Seconds later I could feel the medicine starting to make its way up into my shoulder and then down into my forearm.  Then came the burn, I couldn't get to the freezer fast enough!!

Its the little things in life.  For me, its this ice pack!!! 



 

 





Staying positive

When I tell people that I have was diagnosed with MS 3 years ago they can't believe it.  They ask me how I am feeling and the effect that it is having on my day to day living.  I am happy to say that I feel great.  Every night when I give myself my injection I have 30 seconds where I say, "Damn it I hate MS!"  Then I get to follow that up with snuggling my husband and it leaves my mind for the most part.  It stings for a little bit and I get bruises at my injection site, but life goes on.

I have heard more than one person tell me that people with Multiple Sclerosis seem to be so positive all the time.  Last year I was having trouble with my memory and went through a bunch of testing to see what was happening.  The doctor that was conducing the tests said he deals with a lot people with MS and everyone that he has come in contact with is always so positive and happy.  I thought about why this is last night after reading another blog from a woman who's husband has MS.  She said she was feeling down after the holidays and looked to her husband who has MS to make her feel better.

When you have MS you never know what tomorrow will bring.  I could wake up tomorrow and be in a wheelchair for the rest of my life, but why would I let that thought consume my happiness?  I could wake up tomorrow and there might be a cure for MS!!  I like that thought better.