Happy Halloween!

Well, tomorrow will be one week with no disease-modifying medication for my MS.  My MS is misbehaving something kind of fierce.  My strength has decreased, along with my coordination and fine motor skills.  I have also been reading up on the risks with the new med Tysabri today.  There is a slight chance that I might die....like less than half of a percent chance.

This really has me thinking about the quality of my life, not so much of how long I am going to live.  I am not remotely, interested in the quantity of years left.  I just want to enjoy every moment that I do have left.  Maybe, this is why I want to shed the negativity and my own negative thinking about certain things.  It doesn't help at all that the disease modifying drugs for MS and the MS itself causes depression.

I just want the people who are the most important to me will have great memories of me and I of them.  The best thing about today was listening to Top, Nerf (my oldest son), and Doc (my youngest son) working in the kitchen together to make dinner.  It was one of the sweetest sounds in the world, next to the chaos that ensued shortly after at the dinner table.  I have to teach them the importance of having a family dinner every night. The know that they have to eat at the table with the rest of the family, but they get distracted by every-little-thing-that-moves-and-leaves-the-table-then-wonders-why-everyone-else-finishes-before-them.  Still, all good experiences, but that depends on how you look at it.

I take a step back when I start to get frustrated and try to think of another way to explain the solution for all of them to understand.  I have learned this since being diagnosed and when my Nerf was diagnosed with Autism-PDD.  I hope I have taught them to be more patient with their own children and patient with Top.  Poor Top has served our great country for a while now. He has missed out on so much with Nerf and Doc.  I guess I have to miss out on some of these experiences or share some with Top, so he can have some firsts with Nerf and Doc.

For the past year and a half, I had no choice but to share.  Top had to take them to their first day at their new schools.  He has also had to do most of the cooking, cleaning, and all the other things on top of taking care of me.  I am blessed to have him in my life.  He does a really good job of picking up my slack when the MS gets all snitchy and when I get all dagger-happy, due to the MS and MS medication caused emotional issues.  Poor Top.

He needed help doing all of these things, and is active duty in the Army. It was like I was the one deployed, but not to Iraq or any other country.  I was a POW in my own body, and it was all thanks to the dictator named, Multiple Sclerosis.  Top's brother, Bro, came to help with Nerf and Doc since my family could not afford to do this. (Granted, no one really could with the crappy economy.)

During this time, a LOT had happened.  His mom passed at one of the happiest times in her life. She was expecting another grandchild, all the while praying for that particular grandchild to be a girl.  She even got to see her youngest and only daughter get married.  No one knew that Death was knocking on her door to take her. So, he took her at the best time of her life.  I had sent her picture messages of me standing with my walker and the boys. This made her day. She hated that she couldn't leave her job to come help us, like we helped her and dad a few years ago.  She knew that I didn't expect anything in return for what I did to help the family after her battle with uterine cancer.  I would jokingly say to her, "Oh, I know where ya live."

She also knew that I gave a darn about her and her health.  I even threatened to drag my crippled rear out of the house to take her to an appointment-that-she-was-not-going-to-miss-on-my-watch-while-Top-was-deployed.  After all, our relationship as mother-in-law and daughter-in-law was closer than the relationship that I have with my own mama because we shared the experience of being diagnosed with something that would jack us up real bad and she lived close by, but I digress.  She is the grandma of a cute and squishy granddaughter!

Not too long after her passing, Top's dad, Dad, retired from working to come and help out with the kids while he focused on the Army work, me, and my appointments.  Dad is amazing and stronger than I'd ever be if that would have happened to Top (knock on wood). I'm glad Dad is here.  He is enjoying his grandsons, Top, and Bro's company.  Again, Quality of life.  As soon as I am back up and running, Dad will be able to get more Quality of life...traveling the country-side to visit all his grandchildren, his only granddaughter, and the rest of the family. Hence, adding to my quality of life. He won't feel like he has to be here so much.  (Note: I feel that the MS has the entire family trapped...sigh...)  As for Top, I hope that he'll be able to see things the way that I do and be able to keep that with him forever.

My MS journey...

Just a small town girl,
Living in a crazy world,
Got on the MS train,
That's not going anywhere...

This is how it feels sometimes.

I was diagnosed in 2003, but had physical symptoms since 2002.  My diagnosis came while I was pregnant with my youngest son.  I did not start treatment until August that year.  This blog is about my journey with MS and its medications.  I have been through three so far, and I am going to start on number four here soon.

The first med I tried was Avonex, which isn't a bad drug.  It is a once a week, intramuscular injection.  For almost six years, I did just that.  In 2007, my legs started to be weird, weirder than normal.  I would get foot drop or drop foot for a week or more.  (There was much that happened from 2003 to 2005, but I will explain that later on.) Th numbness, tingling, and the weakness in 2007 jump started the WHOLE ordeal that I am in at the present time.

Top (my husband) was deployed to Iraq in 2007.  During that time, I was thinking maybe it is stress causing my symptoms like it did during the previous two deployments.  But then, my mother-in-law had some really scary health issues. Uterine cancer, which sucked and still does suck.  She made it through that. My MS symptoms worsened.

By November 2008, Top returned from a fifteen month long deployment.  I had issues walking even then.  In May 2009, my neurologist's PA switched my medication from Avonex to Copaxone.  I was fine with that the first month, but the stinging started to drive me a little bonkers.  I stayed on the Copaxone for a good six months.

We moved or PCS'ed to GA.  I ended up being paralyzed from the waist down in June 2009.  I was hospitalized for a month and a half.  My new neurologist put me on Rebif in December 2009.  I have been using Rebif since.  The struggle to walk has been a one step forward and then two steps backwards.  This entire ordeal, (I must add) was all due to an EVIL underlying infection that went untreated properly by the folks at a hospital in TN.  Urinary tract infection.  Ladies and Gentlemen with MS, please look out for the signs. If you are using the restroom more than normal, get to a doctor, have them do a culture, and prescribe the CORRECT antibiotic.  I cannot stress how important it is to get this small infection in the beginning.

After months of physical therapy and almost a year of Rebif, I am able to walk for short distances while holding on for dear life.  My legs still wear out easily.  I cook and do what I can with my children. Sometimes, I get weepy and depressed with the large dose of interferon three times a week.  Rebif has done wonders with me, but I have plateaued.  So, my neurologist, Top, and I are all in agreement to move on to the bigger guns to help get me out of this wheelchair.

Next up is Tysabri.  I know a couple of people have died during the trials.  They were also taking Avonex while getting the Tysabri.  Their immune systems could not handle being suppressed that far.  It was a double-whammy, you see.  I am well aware of the risks involved, but if it kicks my MS's a$$, then it is a risk I am more than willing to take.  I am keeping positive thoughts and positive energy around me as much as I can.  Being optimistic about changing meds is what will help make it work, along with prayer.

Here's a video of how my first doctor's opinion went. (Note-he was an ophthalmologist.)