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Saturday, January 30, 2010

"Seeing is NOT Believing" Poem

Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.

Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.

Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.

Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.

Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.

By Tammy Malkowski

"I'm Still Me" Poem

MS hides, inside of me,
Invisible to the naked eye.
I can feel the MonSter
Trying to make me cry.

It’s a part of me, it’s true.
That, I cannot forget.
It rears it’s ugly head
And some days are filled with regret.

There are some bad days
You’ll hear me complain.
But if it consumes me,
Then what will I gain?

I am still “Me”,
The person you’ve known.
Even though inside
The disease has grown.

I won’t allow it
To take over me.
To steal my laughter,
My smile or faith in “HE”.

I choose to laugh
About my life.
To handle it with grace
Dignity and less strife.

So laugh with me, smile with me
But please remember this:
There is rarely a moment
That MS does not exist.

But through it all, the highs & lows,
I have my family & friends.
Remember I’m still “Me”.
I will not let MS be my end!
By Tammy Malkowski 1/30/2010

Friday, January 29, 2010

Mind Numbing

Hello All,

The last few days, including today, have not been good. My arms and legs keep going super numb. It is kinda scary to me. I can move my arms and legs, but before I do it feels like they are completely asleep. I shake them just to make sure I CAN still move them. It scares me that the feeling could go away and not come back. This hasn't happened to me in a LONG time. The numbness is there often, but not at this level.

My right arm is 80% numb and my left one is about 60% numb. My right leg is almost 90% numb and the left is 75% numb. It is hard to do my route because it feels weird walking on feet you can't really feel. I guess I would liken it to when your foot falls completely asleep & then you walk on it. Except there are no pins & needles and no sensation that the feeling is coming back.

I was afraid to drive yesterday and I was even nervous to walk to get Kristina from school. I made it there and back though. I did my route this morning & really I was able to drive and walk, but I couldn't wait to finish. I'm even having a hard time typing this. I keep having to go back & correct the wrong keys I've hit.

I guess today's post is not so humorous or uplifting today. My mind is numb like the rest of me. I'll keep smiling and hoping the feeling comes back soon. Thanks for listening/reading. Love to all!!


Wednesday, January 27, 2010

I'll Show You Mine, If You Show Me Yours

Hello All!

A friend shared this link with me on you tube. It is a woman with MS who went to a mall and questioned people about MS. She gave them the opportunity to "put on the MS costume" and experience for a moment what the physical symptoms of MS feel like. I thought it was really well done and gives an accurate picture of how many people with MS feel. I have experienced and continue to experience many of the symptoms with the exception of the "MS Hug" which she tries to illustrate with the belt.

She isn't able to show the cognitive symptoms such as slurring, or not being able to find a word you know or short term memory loss. All which are just as frustrating. But she does help people get a better view of our world.

It is less than 9 mins long, so if you are curious how MS feels watch her cute video clip. You can copy & paste the link below or go to and put "the show must go on MS" in the search box. So this is a way I can show you a little of my world. Thanks as always for all your support!

Love, Tammy

ps I would like to thank Kristie Salerno Kent for putting this together and helping family and friends try and understand. Thanks!!


Friday, January 22, 2010

Making Up My Mind

Today one of my fellow MS buddies wrote a comment defining the difference between a "Flare-up" and a "Relapse" to help someone newly diagnosed. I found it very informative and felt it might be helpful to my friends and family. I know many people worry about me and MS. More because this disease is so hard to understand and even harder for people to "see".

Just so you know, I have read this type of explanation in books and in other resources, so what she wrote is true and valid. So here it goes:

"If it's a Pseudo-Exacerbation or Flare-up it'll last less than 24-48 hours consistently.

If it's a real relapse, it's considered the worsening of existing symptoms and/or the appearance of new symptoms that last consistently for more than 24-48 hrs.

If you're having a true relapse then you need to get to your Dr ASAP so you can either be treated, if necessary, and otherwise document the relapse.

If the relapse involves your eyes, you need to wait no more than 24 hrs to get medical care because the longer you wait, it is less likely that the steroids will help you recover the damage to your eyes.

...this is a guideline to you, so you know when to worry and what is "normal".

... if it's something that happens to you everyday, then yes, it could be considered a flare-up. I go thru times when I feel like I'm having a flare-up all the time, everyday ...this is MS just being aggressive so far as your symptoms are concerned."

The above is not a direct quote. Much of it is what she wrote, but some is paraphrased. I added the quotation marks simply to distinguish between my voice and her voice.

I have also read that when your symptoms come and go it isn't considered a flare-up, but MS "reminding you it is still there".

There are days when I feel better than usually and others I feel worse, but many of my symptoms never go away. Someday, that may change. The shots I take are designed to keep me from getting worse. It cannot repair the damage that has been done already. So on my bad days, when I say MS sucks, please don't panic. When I panic, I'll let you know.

This is my life now and I choose to live it informed and with a sense of humor. Some may not find the same things funny that I do, which is fine, but I need to laugh as part of my coping mechanism. I am still me and I just have days that are more frustrating than others, but I am alive and moving and I will continue to stay positive.

I fell twice this week. I knew it was gonna happen. The first time, I knew I was due to actually hit the ground. I almost fall several times a week, but I usually catch myself. I've been averaging every 3-4 months of meeting the concrete or floor. My last fall was in October. Not that I plan these things, but they ask me at my neurology appts when I fell last. So when I said October, I thought about the time that had passed. Basically, I know to try and step with a little more care and purpose. I actually made it thru my whole paper route on Sunday. I threw the last paper turned around and BOOM! Hello Driveway!

The second fall I knew the conditions were ripe for me. I had overslept and had been experiencing vertigo the last few days. Add this to my current leg weakness and that I am now rushing to finish delivering my papers and, well you can see where this is going. Throw the paper, spin around, arms flail, hands brace and landing SMACK! on my right side, OUCH! Started to cry and curse, but told myself I didn't have time for that so I got up and kept going. Later that day I began limping. My sister asked why. I said "I don't know, but my leg hurts." (This is a normal thing for me.) But then I remembered, "Oh yeah. I fell this morning and landed on this whole leg & hip." She couldn't understand how I could forget it happening. It's just a part of my life. It sucks, but I'm not gonna dwell on it. I am careful and aware. Now let's move on. I posted as my status on Facebook today "That's not flying! That's...Falling with style." --Woody form Toy Story." I like it cuz that's how I have Made up My fall with style!


Wednesday, January 13, 2010

S.O.S Sending a "Flare Up"

It has not been the greatest week. I had been feeling more fatigued last week and some weakness on & off, but I went into a flare-up late Sunday night. It's been a rough week. My right side has been weak, my toes numb, stumbling alot, and my right foot has wanted to drag along. The exhaustion has been overwhelming and the pain in my legs and arms hasn't been a picnic. Still trying to keep my spirits up, when I'm awake. Poor Dave has had to pick up most of the slack this week cuz I've been sleeping so much.

I saw Dr. Beall on Tuesday. He prescribed the fatigue medicine, Provigil. Now, I'm waiting for Blue Care Network to approve it. As usual, nothing comes easy with this. He agreed to call BCN to fight to get the Betaseron approved, so that's good. I heard him ask the nurse to get them on the phone. Of course, then I heard her ask if she could do it after lunch, so who knows if it got done? The BetaPlus people called today to send out my next, free, one month supply while we wait.

I started my 1/2 dose of the Betaseron last night, from a 1/4 dose. I told that to Dave this morning. He said, " I can tell cuz you look like crap." Thanks, I feel like crap. They ease you into a full dose to help your body adjust. I'm sure the flare-up doesn't help.

When I saw Dr. Beall yesterday, he had my MRI copies on disc and was prepared to take them to Saginaw to review with his specialist. I see him again on March 3rd, so I will see what he finds out then. Also, my letter that I sent to the head of the neurology department is right there inside my file! Open for ANYONE to read. I asked him about it. he said, "Oh, your letter. I read that. Good for you." I said, "Can I have it back? I don't want to be lynched." He said, "No. It's good to have it there. Keep them on their toes." Great. I'm gonna be lynched. This should truly improve my care. I noticed the nurses seemed hesitant with me, so I was EXTRA nice. Maybe my imagination, but how could I not be thinking that? I am a nice person. I just would appreciate a call back within a week and with the right info. Is that too much to ask? Apparently, it is.

I was feeling really bad this morning, but now I am able to sit up and type this, so hopefully that is a good sign that this is coming to an end. S.O.S. Sending a flare up for a better! ;) Keep smiling, keep moving forward, keep believeing in yourself!

Sunday, January 10, 2010

MS sucks link

Someone posted this link on the MS Facebook page. Some are a little rough, but found most funny. Thought I'd share.

Love, Tammy

Friday, January 8, 2010

Dizzy in my Head

Happy New Year!! Sorry for the delay, but you know me. So, I started the Betaseron shot on December 29th. I had it before Christmas, but the BetaNurse and I decided to wait until after in case I had a bad reaction. With the Betaseron you get a device to help administer the shot called an autoinjector. It looks almost as weird as it sounds, but it helps. Basically, I assemble the shot and combine the medicine within the syringe. Then I put the whole syringe inside the autoinjector. Once I am ready to give myself the shot, (frankly, when am I ever ready?) then I place the autoinjector against my skin in one of several approved places. I can inject in my thighs, my stomach (I know!), the back of my arms, with help, or my hips (which really is a nice way of saying my upper ass!). Once it's in place I press this button, which has this loud click! ( I don't like the click.) And it slowly pushes the plunger down. I count to 15 or look in the window of the autoinjector, when it's red, it's done. Easy, right? Well easier than Avonex on this front.

The needle for Betaseron is almost half the size (smaller & thinner) than Avonex. It doesn't hurt, most of the time and it's nice to not watch the shot go into my skin. The downside is I have to have this injection every other day. :( But I am hopeful.

A few days into the new year, I found out that Betaseron is a "formulary exclusion" for the Blue Care Network plan we are in. This means I am in for a fight of sorts. They only approve the Avonex, we know how well my results were on that or Rebif, which I am not a candidate for. So, I called Dave's insurance plan manager for help. His name is Brian and he has been very supportive of me during this whole MS process. He said to call if I ever needed help, so I called.

He is working with BCN and I need to get a letter from my neurologist stating that we have tried Avonex for 6 months and it was not tolerated well. That I'm not a candidate for Rebif and Betaseron is "medically necessary". Michigan Neurology called me 2 days after I left the message regarding the letter telling me it was ready. I know, too good to be true right? It was. They printed out the notes that my neurologist sends to my primary care physician and even addressed it to him. Do these people actually listen to these messages? I think they heard letter and stopped paying attention after that. But I was smart and read the letter before I left their office. I went to the desk and explained the error nicely. She apologized and said she would have the correct one done. In my favor, I see Dr. Beall on Tuesday, Jan 12th, so I can talk with him directly if I need to, which we all know, I do.

I have had minor reactions so far to Betaseron: chills, nausea, achy body...typical flu-like symptoms. I have begun a new flare-up, which happened when I started Avonex too. My legs have been very shaky, weak and painful this week. My vision has been blurry and double-vision again. Fatigue is back too. I am so tired. My paper route has been rough this week, but I am pushing through and taking my time.

On an upside, I found a page on facebook for MS patients along with their family and friends. It has been a Godsend to me! I am so fortunate to have so many family and friends be so supportive of me. I feel blessed! But this site is wonderful because I have people who know what it actually FEELS like to have MS. I can ask questions, share stories, offer and receive support, get advice about stuff others have tried, vent and laugh! I have made two really good friends so far and am meeting more nice people daily. I am so incredibly happy to have found it. I have seen people who have family members come on for questions or support as well, so feel free to check it out if you have an interest.

So there it is, my start to 2010! I don't know about you, but all this info makes me a little dizzy in my head! Love to all and have a happy and HEALTHY 2010!!!! -Tammy