Today is going to be a GREAT day!!

Click here to join Susie's Stars Walk MS 2016 team.

I woke up with this thought in my head.  I went to take a shower this morning to find our water freezing cold.  I let the water run while I went to get my first cup of coffee to come back and find it just as cold.  Still, "Today is going to be a GREAT day!"  I kept having this thought in my head all morning.  Today was my annual neurology appointment and I was going to ask AGAIN about switching to pills and to finally be done with my injections.

The appointment started just like all the others. .  . "How are you feeling?"  I felt great and I told him that.  I gave him the results of a biometric screen that I did at work so I wouldn't have to go and have my blood drawn again.  He looked thru my numbers and said everything looked great.  There were a few areas where the technicians who did the screening said I was elevated on, but he assured me that if his numbers were what mine were, he would be jumping up and down with joy.  He even assured me that my BMI was not in the red!!  (SCORE)

So, let's cut the small talk and when can I switch to pills.  He gave me the same look he has given me the last 4 years and I knew it wasn't going to be good.  The shots are working so why rock the boat, he asked my.  They hurt, that's why!  He reminded me that no insurance company will let me switch to a pill, that just came out on the market, and is 5 times more expensive then the shots when the Copaxone is working.  He also said the research just isn't there to support how effective these new oral treatments are. 

I was devastated and looked to my husband for his input.  Reuben sided with he doctor and said he didn't want to risk an exacerbation while waiting for the pills to start working.  My doctor explained to us that when I started on Copaxone it took 6 months for my body to start feeling the real effects of the drug and for it to start working.  He reminded us that it would be the same turn around if I were to go off the shots and switch to an oral medication.  That would be 6 months where my body would be susceptible to the dangerous effects that MS can have on my body.  I could get another plaque on my brain that would effect my vision or memory, even worse it could paralyze my body in some way.  They could treat the flare up with steroids and I would, hopefully, regain back what I had lost, but I would always have that plaque on my brain.  He did make me a deal and said that we could revisit the oral medications in 3-4 years and possibly get a second opinion. 

He did an exam on me and said everything looked great, but he wants me to go have an MRI done since my last one was in 2012.  He would like to compare it with the last ones I have had to see if there are more plaques or to reassure me that Copaxone is doing what it is supposed to do. 

I got in the car fighting back the tears because I knew tonight was another shot night and I was going to have to continue these for the foreseeable future.  Reuben knew something was wrong so we talked about it.  We cried about it.  I lost it at one point and yelled at him I just didn't want it anymore.  I don't want MS anymore!  I don't want to talk about it, I don't want to walk for it and I don't even want to think about it anymore!!  We sat in the parking lot together crying and holding hands.  Reuben told me that he can't do this life without me and what were the kids supposed to do if something ever happened to me. 

The company we work for transports a lot of people with MS and many of them are older who have had this disease for a long time.  Reuben transports passengers to the MS Society and he sees first hand what this disease can do.  He told me of a woman who was "Spunky just like you", who had a great career, but her MS had gotten so bad she had to sell her home and go live with her daughter.  She had to quit her job and couldn't do a lot of things on her own.  She had to rely on her daughter for some of her basic living skills.  This really put things into perspective for me. 

I need to be grateful for the hand that I was dealt.  I ask God a lot, why me?  Why did I have to get this disease?  I need to turn my thinking around and be thankful that I feel as good as I do.  I told my neurologist that I think this is the healthiest I have ever been in my life.  I stay active, eat a well balanced diet (a girl always needs a little ice cream) (and wine) and I have great healthy relationships that keep me happy. 

I love reading the notable obituaries in the paper at lunch and hear people's amazing life stories.  It is something that I remember my mom doing and she would tell me little tidbits from the articles.  I read one a few weeks back of a 43 year old man who, towards the end of his life, was taking 6 insulin shots a day to try and keep his diabetes under control.  I am fortunate to have to do my shots only 3 times a week!

Yes I just said I am fortunate that I have to do my shots to keep my healthy.  It is my ugly little reminder that yes I do have MS, but I am a fighter and these little shots are not going to get me down!

Tonight I am yelling again. . .

I have Multiple Sclerosis!
I want to talk about Multiple Sclerosis!
I want to think about Multiple Sclerosis!
I want to walk for Multiple Sclerosis!

Will you join me?  Click here to join Susie's Stars Walk MS 2016 team.

Walk with me, donate with me, talk and educate with me, pray with me for a cure!

MS Walk 2016

Click HERE to be directed to Susie's Stars team page so that you can donate or join our team and walk with us on Sunday May 1st, 2016!

*Let me know if you would like to purchase a "Susie's Stars" MS Walk shirt.  If not just wear ORANGE!*



On Sunday, May 1st, 2016, I will join thousands of others in a movement to end multiple sclerosis by participating in Walk MS 2016. When you walk with us or make a gift to the National MS Society, you support research and local services to those affected with this unpredictable disease.

Every hour someone is diagnosed with Multiple Sclerosis, a chronic disease of the central nervous system for which there is no cure.  Multiple sclerosis interrupts the flow of information between the brain and the body and stops people from moving.  Many have trouble imagining what their lives would be without the ability to move, but I know the effects of MS personally.   

My symptoms began in December of 2008 with my face itching uncontrollably.  I ruled out allergies to the products I was using on my face as well as food allergies and just began to live with this itching.  In January 2009 I was driving home from work when suddenly I got an extreme headache.  It felt like someone was stabbing me on my left temple with a hot pitch fork.  I began to cry and had to pull over because I couldn’t stand the pain.  I sat on the shoulder on highway 94 with cars speeding past me, rocking back and forth and rubbing the left side of my head to try and get it to go away.  I called my husband who was leaving work at that time so he pulled up right behind me on the freeway.  We sat there for a little while and the pain subsided enough that I was able to drive the rest of the way home with him behind me to make sure I was OK.  The next day I awoke to the left side of my face being numb.  I called my doctor and she suggested that I go directly to the emergency room.  After several tests that evening the ER doctor’s were thinking I had Multiple Sclerosis, but he could not make an official diagnosis.  He referred me to a neurologist at that point.  Several doctor visits later along with lots of pokes, prods and tests finally confirmed that I have MS in February, 2009.  I was told things would never be the same for me and I was going to have to find a way to live with this disease.  What!    Me?    Why?
 
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 had to endure these injections every single evening.  

I visit with my neurologist at the end of every summer so he can order some blood work and see how I am doing with the disease.  This last visit I entered just like I always do, “So, Doc. . . When can I get off these shots?”  I usually get the same response every year, “They are working right.  Let’s not fix what isn’t broken.”  I was getting so tired of doing the shots everyday and feeling like a pin cousin so I pressed a little more this time.  Then the best news ever came across his table, I could be switched to every other day shots and remain on Copaxone.  They recently came out with a longer lasting medicine that only needs to be injected three times per week.  Yes that is right!!!  I only need to poke myself 3 times a week instead of every single day of my life!  Reuben was a little hesitant about switching the medicine up in fear that I would have a flare up, but I was willing to take the risk.  I got started on the new shots within a month of that visit and I still feel great!
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.

Susie’s Stars was started in 2011 with a team of 18 walkers and we raised $1,296.50. 

 
In 2012 we walked again with a team of 64 walkers and raised $4,439.00.

We gathered again in 2013 and had 55 walkers and together raised $6,851.00.

In 2014 we had 50 walkers and contributed $2,718.58 all for the MS Society.

Last year, we had our biggest team EVER!  We has 79 people and 2 dogs walk with us.  Our team raised $5,047.29!!

As you can see, I have a personal stake in this particular event.  Not only do I want to help find a cure for myself, but also the other people diagnosed with MS who live in the Upper Midwest Chapter area.  I know these walks make a difference because when I was first diagnosed treatment options were so few.  Now I am able to do shots just three times a week instead of every day.  This is what the money goes for so maybe, one day I won’t have to do another shot EVER!

MS is a disease that affects the central nervous system. Some symptoms of MS may include loss of balance, impaired vision and hearing, fatigue, muscle weakness and, in some, paralysis. Even simple everyday living skills become increasingly difficult. Everyone is affected differently by these symptoms.

Click HERE to be directed to Susie's Stars team page so that you can donate or join our team and walk with us on Sunday May 1st, 2016!

Thank you in advance for your support. Please call me if you have any questions or comments about Walk MS. I can be reached at 763-464-3011.