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Friday, January 21, 2011

Hello Friends & Family, Well it was a very busy holiday season. I ran myself ragged that I am surprised I didn't end up in a flare up. I just stretched my self too thin. I need to pick & choose what's really important to me next year. Instead of sending Christmas cards, I had them made after New Years and made Happy New Year cards. Hey, everyone got them, right? My heart is in the right place, but making the perfect Christmas may need to be reevaluated. I still have another kind of cookie to still make as well as two kinds of candy. Hmmmm, Valentine's Day?
Well, after Christmas, I went away with my mom for a much needed rest to a bed & breakfast that is a scrapbooking getaway called The Cropping Daze in Chesaning, Michigan. I so needed that. Just to be away from kids saying, "Mommy" over & over, to the stress I put on myself. I'm pretty sure my husband was happy to see me go after the stress I was under caused me to be less than pleasant. Heck, I was happy to see me go so I could come back as the "Tammy" I wanted to be. Not who I had become those last few weeks. My only regret of the weekend was not taking a nap when I should have. It made me too tired & I began stating to others at the resort, "I wouldn't poke the bear". LOL!

I did return well rested & less stressed out. I was more myself & relaxed. The kids & I got the flu a few days later. Whew! The new year started with a bang! Once the kids were back in school, we started to have things return back to normal as our routine resumed. Truly, with all things considered, my MS had been decent over the last 6 weeks. Although, never perfect or gone from my mind there are good days & bad days. I only had one bad day in December. When my body said, "Slow down, Idiot!"

The rest of January was pretty good. I even had lost weight over the holidays. I tribute that to two of my meds seem to act as an appetite suppressant and eating on the move in December. The benefit from that is my appetite is smaller, so I am hoping I can continue to lose more.

All of this leads me to this week. I had stopped my Betaseron shots, unintentionally, for a couple of weeks. I forgot a few times over the holidays & it kept going. Then I didn't want to start back up at Christmas in case I would react badly. So I put my start for January 4th. Then my friend pointed out I may have to gradually increase my dose again instead of starting on the full dose right off. So I had to wait until my neuro got back to me with his recommendation. When I did hear from him he recommended going back to the full dose. So I set the date for my shot party to resume and prepared to begin. Stopping your shots is definitely not something I advise. It happened to me out of circumstance more than intent.

Shots resumed without incident. In fact I felt great!! That lasted for a couple of days. Then my flare up began. I got some chills after my shot, but on top of that I had a horrible headache that made all my limbs hurt when I turned my head. The pain in my body seemed to radiate from my bones out to my skin. It was bad enough to make me cry out in pain & beg my Grandma in Heaven & God to please help me. Yes, that bad. It was bad enough that when my husband came home, he woke me up due to my moaning in pain in my sleep. Unfortunately for me, his good intentions caused me to struggle to fall asleep again. The next morning, I struggled through my newspaper route. I moved slowly, but as i got to the last quarter of it, my pain started to ease as I moved more. I thought it was on it's way out. I was wrong.

Through most of the afternoon it seemed to have passed. It hadn't. As I got into bed that night, I felt the pain returning, so I turned the light off hoping sleep would allow me to miss it. I was able to sleep, but when I woke up, I felt the pain creeping back again. I went to pick up the newspapers & sat as I stuffed them to conserve energy. As I drove to my route the pain began to grow. I threw 5 papers, which is misleading because I say throw, but I have to walk to each porch and throw it on there. So I threw 5 papers and knew I couldn't do it anymore. I drove home to get my alternate list & returned to my route. I knew my boss wouldn't be able to take over for an hour, so I struggled to get a little more done until I called her to tell her I needed to go home. She told me where to leave the rest of my papers, I drove home & called another mom to take my daughter to school.

Then I crawled up the stairs to my bed. Told my husband he needed to get the kids ready & that I was not doing well. He knew I had been in pain the night before. I changed into my pajamas & collapsed into my bed where I began to sob. I told my husband, "I hurt when I walk. I hurt when I sit. I hurt when I lay down. I even hurt when I try to pee. It's so stupid!" All he could say was he was sorry & stroke my hair. I knew he felt helpless. So did I.

He went to take care of the kids & to let me rest. I tried. I really did. I couldn't find anyway to stop the pain. I would find a position & for a min or two the pain would ease then it would build again. I would shift my body again, and it would increase agan. I was all over that bed desperately trying to find sleep & relief. I couldn't. I texted my friend, Kelly, to see if she was awake. She called me and found me crying so hard she couldn't understand me. I told her how much pan I was in & what had been happening to me. I told her of another symptom I had that was new. When I touched my chin to my chest or bent over it felt like electric shocks were jolting down my spine. It hurt and shocked, yes I realize there is a pun there, but it shocked me into standing upright. Apparently this is an MS symptom called Lhermite's Sign. News to me. She told me if I applied heat to my tailbone & the base of my spine it would offer some relief. She also gave me advice on my new pain meds (she has her pharmacy license). Her advice offered me relief until I could get in touch with my neuro since it was only 7:30am.

I did call my neuro who informed me I was in an MS Flare up. Yippee. I had to get some bloodwork, etc & I start IV Steroids on Monday for 3 days. This will help. I decided to wake up 2 hours before I had to leave for work & take my pain meds so when I left for work they would "kick in". That helped take off the edge so I could function. I could tell when they were wearing off for sure. I have to find a way to get through as I won't find true relief until a week or so. I can't miss that much work.

So here I sit writing my blog, while I wait for Monday to come for Steroids. I am resting as much as possible and making the most of my time on the couch. The kids & I are having a pajama movie night. I am happy I have a supportive family, caring friends and an understanding boss. I have a home, and a job and many blessings. I may not feel my best, but I will still control how I face it. Smiling through my tears. <3 Love & Kisses <3

Over My Shoulder (A Poem)

Over My Shoulder (A Poem)

As I looked over my shoulder
To all I thought I’d lost.
I cried as I grieved
For what my MS had cost.

I missed my old body
And what I used to do.
How I made plans freely,
And met my friends at noon.

When I didn’t worry how I’d feel
As I began each day.
When I didn’t continually struggle
To find the words to say.

I kept looking over that shoulder,
Crying for what I missed.
I would go through my mind
Making a mental list.

Then a funny thing happened
I realized something true.
While I was looking over my shoulder
I almost missed something new.

I had learned to count my blessings
To really budget my time.
I had learned to value what’s important
And appreciate what’s mine.

I found out who my friends were,
I knew who’d be there through my pain.
I learned to be spontaneous,
And saw what I had gained.

I made new friendships
I put my health first.
I spent more time with my children
And hugged them til they burst.

I valued the time with my friends
And I learned when to say “no”.
For my time was much more valuable
I could choose when to stay or go.

I loved with all my heart
And gave a part of me away;
But only to the ones deserving
Of the best I had to give each day.

The saddest part of this story
Is what I stood to lose.
I forgot what I had in front of me
That I had the right to choose.

While I was looking over my shoulder
To all I thought I’d lost.
I almost missed what I still had
And what my regret would cost.

I stopped looking over my shoulder
I appreciate what’s new.
I have a new life now
And MS is included too.

But now I live each day
Finding my smile in my heart
I laugh, I love, I live my life
Cuz MS is just one part.

~Tammy Malkowski (1/21/2011)

Wednesday, January 12, 2011

A Mom with MS ( A Poem)

A Mom with MS (A Poem)
A Mom with MS,
This is me, that is true.
But I will prove I am more.
In all that I do.

I refuse to be negative,
to dwell on the past.
The journey of MS
is one that will last

I am more than MS,
I am more than a label.
I can get my kids to school
And get dinner on the table.

The kids may see me nap,
More than their friend’s moms do.
But they will know my strength
And the effort I put forth in all I do.

I want them to be proud & learn from me;
That even when you face a challenge
Your life can be yours.
We are all still free.

It’s how you handle the storm
That makes you who you are.
By weathering the storm of MS,
My attitude will take me far.

I stand here stronger than MS
I won’t let you break me.
Because I am who I am
The best of me is all you’ll see!

~Tammy Malkowski (January 12, 2011)

Taking Charge ( A Poem)

Taking Charge (A Poem)
Today, MS, no matter how hard you try
I will stand up to you and wish you goodbye.
I know in my heart you are a part of me,
But you won’t be the only part others see.

I am stronger than you;
Even when you knock me down.
I will triumph over you;
Even as I hit the ground.

I can adapt to my new life,
Though my old body may be gone.
I can move forward
With a new outlook, I’ll move on.

Find a new perspective,
A new approach, a new view.
Find a silver lining,
And control what I do.

I will rest when I need to
And I will take care & time;
To make sure I am healthy
And not lose my mind.

I’ll live my life
And experience each day.
To find a smile, to be grateful
Laugh, Love and pray!

For I am my own strength;
My own advocate it’s true.
No one can steal my joy,
For it is inside all that I do.

Smile thru my tears,
Laugh at the pain.
Find new friendships
I never thought I could gain.

Believe in your heart
You are strong enough too.
Because YOU are in charge;
It’s your life to renew!

~Tammy Malkowski ( January 12, 2011)