Search This Blog

Monday, April 30, 2012

The Brain Farts Team Walked...

On Saturday, April 28, 2012, The Brain Farts Team & I walked in Bloomfield Hills, MI to support the National MS Society. It was cold. It was rather chilly. It was 43 degrees. It did NOT rain, so I will take the cold. Once we started moving it was fine. It was colder standing around waiting for the NMSS to begin the opening ceremonies.

Before we arrived at the walk site, I received an email asking our team to lead the walk because our team had the largest amount of registered teammates. Go Brain Farts! As if that wasn't enough, I was asked to cut the ribbon to begin the walk. Wow! Me? Really? Thank you. Thank you so much. I felt pretty honored.

We had 29 registered walkers for our team. Not everyone was able to walk that day, but I believe there were 25 of us Brain Fartees walking. Now the route they laid out was a little up and down, like, hmmmm, uh. Oh! Hills! Wait. Bloomfield Hills. Bloomfield HILLS! I get it! Lol ;) It was very pretty and the houses were an incredible site to see. With the exceptional random car that decided NOT to slow down after we were crossing in the road. We did look both ways & no one was coming. Within the hills were many curves and blind spots. What can you do? Not everyone has a cheery disposition.

The volunteers were amazing! They were helpful from beginning to end. I only made it half way again, much in part because of my friend, Kelly, who joined our walk. I had to walk next to her and catch up. I had to ask her "Wheelchair Hotie" booty to slow down. I'm not on wheels here, Girl. Let me keep up! So, I did make it to the halfway point. There was a vehicle that had stopped there for walkers who needed a ride back to the finish line. Thank you & a big shout out to FORD MOTOR COMPANY for donating the vehicles for the NMSS walk!!!! Apparently they do this for all of the walks thru out Michigan. It was a very comfortable ride in that brand new Lincoln. Paul & I rode in style, my friends!

The rest of my team made it the whole way and I learned on Sunday evening that not only did we meet our new goal of $4,000, but we exceeded it! Last check was $4,424 and that does not include the money any of the team members turned in at the walk site. The Marchetti brothers raised a huge amount of money for the NMSS and our team. Close to $1,200 combined. Wow! And we still have a few fundraisers coming up. Our teammate, Jaime Peralta, is raising money thru her work with donations for a "Casual Friday" in May. My family is hosting a "Family Game Night" Fundraiser on Friday, May 18, 2012 from 5-8pm at St. Athanasius Church in Roseville Michigan. All are welcome to attend! More to follow on that one. My point is we may make $5,000!

It was a wonderful day for our team and just as the other 2 walks we've joined hold their own memories, this one will have many of it's own. I cherish them all! Thank you so much to all of my teammates, my supporters, who donate from their wallets AND their hearts, and all who love me from near and far. My heart swells with pride and love! Thanks for another successful walk!!!

Thought Provoking News

Hello All,
I was featured in our local newspaper, The Macomb Daily, this past Saturday, April 28, 2012. I was interviewed about raising awareness for MS & the NMSS, as well as how I cope with it.

Here is the link to copy and paste if you'd like to read the article and see my family in their "online" picture version. The first 2 lines of the article were cut off. (Next line to be read with sarcasm. *hint* *hint*) Thus proving how much better it is to get your news online rather than the actual "paper" version you hold in your hand. But, hey, I digress.

I would like to copy and paste the email I actually sent to the writer for background on myself. This way you can be "privilege" to all I said. Mostly, because I want to share, not because they didn't print it. We all know I can be a "little" wordy. (You were thinking it. Admit it.)

Actual email:

Here is a little more background on myself. Use it if you like or scrap it if you don't. No worries. :)

My name is Tammy Malkowski, before I met my wonderful husband, I was Tammy Caramagno. I was born in 1971 and am the oldest of 5 girls. I have 4 sisters & 4 step-sisters. I grew up in Harper Woods until I was 10 years old when we moved to Grosse Pointe Farms. I graduated from Grosse Pointe South High School in 1990.
I went to Central Michigan University and graduated in 1995 with a B.A.A. in Interior Design.

My parents have a lot to do with the woman I am today. My dad taught me to always look at a problem from all angles so you're prepared for anything. He loves to play devil's advocate. My mom has taught me be myself and show the people you love how much you care. I have always been that person who stands up for the "little guy" or for some "injustice". Many times to my own detriment. I speak my mind, I love with all my heart and I am always ready to lend a helping hand.

I have been married to my husband, David, since 1997 and we have a 9 year old daughter, Kristina & a 6 year old son, Paul. We live in St. Clair Shores now. I have always wanted to be a stay-at-home mom, so when Kristina was 18 months old I became a newspaper carrier with the Macomb Daily in 2003. It allows me to help with the bills and be at home for my kids.

In 2008, I began having symptoms that eventually lead to my diagnosis of Multiple Sclerosis. I had double vision in one eye, I would lose my balance and fall, and my hands would tremble. Some things seemed so random, but when I would become exhausted after walking to the top of the stairs or just by taking a shower, I knew something was wrong. Once I was diagnosed with MS, my "Devil's Advocate" side of my mind played out all of my possible futures. My positive side kicked in and found ways to laugh at my symptoms. If I fell down in the living room & look for loose change under the sofa. I believe in planning for the worst & hoping for the best. Just because I have MS doesn't mean my life is over.

I can control each morning how I face my day. I choose to smile as much as I can and enjoy every moment. I may have to plan differently then I used to do. Extreme heat makes my legs weak & it's hard to walk. Extreme cold or high winds cause horrible pain throughout my body. I won't be bike riding anytime soon with my kids, but we can go for a walk, or read books together or just cuddle. I choose how I will be a parent. I refuse to let MS choose for me.

There are a few questions people ask me often.

#1) How can you still deliver the newspaper everyday?

I deliver the Macomb Daily 365 days a year & about 20-30 of those days I really struggle and wonder what I am doing. When I remember how few that is compared to the 365, I do my best to keep going. I can move the best in the morning & it keeps me limber.

#2) How do your children feel about you having MS?

I know they worry, but the one key thing I try to remember is how I felt when I was a child. The moments children remember the most aren't the expensive gifts you buy them or the places you take them. Children want to know their parents love them and to pay attention to them. I can do that with my heart, no matter what Ms does to my body.

#3) Why do you think you have MS?

I am a firm believer in everything happens for a reason. We may not always understand why, but we all have a role in the world. I am starting to believe I am meant to be an advocate for MS. I think I can help raise awareness.

I would love for people to realize that MS is different for every person who has it. Some may be wheelchair bound. I use a can for most of my day. Others may never have walking problems. Some people can rise above their pain and be positive like myself. While others will struggle to come to terms with it. There is no one face for MS or one way it looks, but it is still very real. I just choose to wear my MS with a smile on my face & hope in my heart.

My blog about my journey with Multiple Sclerosis(MS) began as a way to update family & friends about my health. It has grown into a avenue about my health, MS, poems and stories and life in general.

Here is the link to my blog, "Pick Tammy's Brain":

Walk MS Page:
Here is the link to my MS Walk Page & the Brain Farts Team:

How Facebook helped me find my voice:

After being diagnosed with Multiple Sclerosis, I went online to search for other people who had MS too. I found the National MS Society's Facebook page. I quickly made many friends and found a place where people understood how I felt & who I could ask questions about my hopes, fears, medications & my future. I was able to offer support in return. After a couple of months, I kept hearing many of my friends with MS becoming frustrated when their friends & family would say, "But you look so good!" People meant well, but also assumed if you look good, you MUST feel good. I decided to put their words into a poem, and wrote "Seeing is NOT Believing". After I posted it, so many people were so grateful to me. It was very humbling because I felt like it was such a small gesture for them. Since they liked it so much, I have kept writing more poetry about it and am up to 15 poems and counting. I hope to publish a book of them to help raise more money for the NMSS.

This is still my most popular poem with people who have MS.

"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

That concludes todays thought provoking news. ;)

Monday, April 23, 2012

Out of Sight, Out of Mind...Really?

Juggling... Juggling. That's what I've been doing lately. Juggling my life and my commitments. I'm actually not too bad at it. So far the stress hasn't kicked in. That is a miracle within itself. Typically, I have taken on too much and then I crumble because of my health. I can feel my health and my MS threatening me with little warnings, like a trip here and some clumsiness there. I stutter or slur or the fatigue seems to creep out. MS likes to make sure I don't forget about it.

That is an interesting comment. Can I forget I have MS? Some people with MS would scream "No!". I tend to agree. I don't believe I ever forget that I have MS & that doesn't mean that I dwell on it either. There is just always some reminder, some invisible clue that tells you it's still lingering, waiting & don't you forget it. There are times that I do forget though.

My forgetfulness has nothing to do with forgetting my diagnosis or what MS is & the accommodations I make for myself and others. What I do forget is some of my symptoms. There are some symptoms that are always with me, and by that I mean when they come out it isn't a surprise. I expect the fatigue, the blurry vision, even the double vision. The pain is never far from my mind. It comes and goes, and some days are worse than others. No one really knows why the symptoms ebb and flow like a sort of internal tide, but they do.

When I "forget I have MS", it's the "other symptoms" that are forgotten. The ones that come from time to time, but don't stay around long enough to establish any real pattern or expectation. I have been noticing these little gems popping up again. The tremors in my hands, the fatigue so overwhelming that you wonder if you can make it to your bed. The weakness of my legs when they become so heavy they feel like someone tied weights around my calves. They wobble and feel weak, like they can buckle if I stand too long. When my legs react like that, they are more prone to jerks and jumps. My favorite one (read with sarcasm) is when I can see my legs are moving to walk, but I cannot feel them because they are numb. It feels as if I am floating above my body. That one and the electric current, Lhermitte's Sign, are in a tie for the strangest MS side effects for me.

I also forget about when I have trouble swallowing too. You would think this would be the one I pay the most attention too. I don't want to be the one who chokes to death because I wanted to eat a jelly bean. There are typical suspects in the food world that make this worse & I know this. The problem with that is I remember as I am attempting to swallow. Mid-swallow, my throat catches & it makes me stop. The candy family like jelly beans or chewy lemon heads, those with the gummy, sticky consistency are not my friend. Nor is bread sometimes. Anything dry, that needs that extra push to break down as you chew then swallow can lead me to it's trap; bread. toast, dry meat and the aforementioned candy.

The forgetting part is when it happens & I think "I forgot about that one". When my legs take on a symptom and I stumble. the familiarity of the symptom is there, but since enough time has passed in between, I forget that there are more then the daily routine I have come to accept. When they come back I remember. I remember how it felt the last time. I remember how it scared me. I remember when I last felt it or the first time I did. I am fearful that it will lead me to a flare this time or that I could end up in the hospital. This is how a flare starts. Then I have to remind myself not to panic because the future is unknown.

It amazes me the things we learn to live with and accept as part of our lives. People do it every day. They accept their circumstances, good & bad. The wife who stays in an abusive relationship, the friend who accepts her role as the shoulder to cry on, but secretly wants her own turn, the mom who knows she will be picking up after her kids because they "forgot", again. People accept other health problems too. The person who has to avoid eating peanuts, the diabetic who knows when to check their sugar, the MS patient who takes her shots to slow the progression of MS every other day and "fingers crossed" hopes it is true.

We accept so much and become so driven by routine and fail to remember we can make choices to change the bad and the good. We can be dutiful, we can be responsible, we can be doormats & we can take more than we deserve. But we can stand up for ourselves. We can ask for help. We can be surprised, good and bad. Life is an unscripted, an unexpected journey. We never know what our day may bring, but every moment we have is a moment we can choose our next move. Sometimes life is impatient & shoves you in the direction it wants you to head.

I know I have MS. I forget that it can be sneaky and try to take over. It also serves as a reminder to me for so many things. MS reminds me to slow down. MS reminds me to expect the unexpected. MS reminds me to have a Plan A, Plan B & Plan C. I live my life with a smile on my face and laughter in my heart. I won't allow MS to steal any more than it needs from me. I live my life on my own terms, by planning for the worst & hoping for the best. I may have to juggle a lot between being a wife & a mother, but I can't forget that my health comes with many twists & turns that can cause me to drop a ball or two. Honestly, there are times it is a blessing to be pushed in the direction to take better care of "me". So these symptoms may be out of sight most of the time, but my body reminds me they aren't out of my mind completely.

Tuesday, April 17, 2012

Brain Revelation

Brain fart? Not so much. Liar? No. Forgetful? Maybe. So busy and taking on more than she can handle. Ding! Ding! Ding! Ding! Ding! We HAAAAVVE a winNER!!! I know, I know, I know. Last week I said I would have a new blog entry every Monday and it would appear Tuesday morning. Here we are the first Tuesday and you wake up to...nothing.

All I can say is best laid plans. The upside is it did get me on here today when I realized I messed up. In the past I would have put it off further, until I could "find the time". There's an interesting phrase; "find the time". Is it really lost? Where are we supposed to look for it? Did we put it somewhere & forget where we left it? That one works for me and most MSers, but I don't know.

My big New Years resolution was to take more time for myself and it would be "The Year of Tammy!". That worked a little at the beginning. I am still trying to get back to that goal. There have been some interesting wrinkles that have thrown it off course too. I just forgot that when we plan life always has a way of throwing you in another direction.

This time I am preparing for my MS Walk on April 28th in Bloomfield Hills, Michigan. This is not unusual, but I issued a challenge to myself and my fellow walkers. This year we need to step up our game and do more to raise money for the NMSS. My kids hosted a returnable can & bottle drive in our neighborhood. Our family is collecting loose change for the months of March & April. I am hosting a Family Game Night Fundraiser on May 18th at our church. This last one is proving to be a lot of work, as I anticipated, but it definitely keeps me busy!

Add to this, me being screened to participate in a MS Research Study/Clinical Trial (I'll give more details once I find out if I am accepted, some loose ends I am attempting to wrap up from last year on a past dispute & putting together a book of my poems with a "twist". It adds up to a whirlwind of chaos. This is before I even add daily things like brush my teeth and eat.

The thing is, I know I need to slow down. Pushing too hard can land me in the hospital or down for the count for a few weeks. I am attempting to pace myself. I still have managed to throw in a few phone dates with friends out of state and some coffee dates around home. I have made more time for the kids and I to play and cuddle. I had a rousing game of Trolls that involved a treehouse and a runaway boat going over a waterfall with my daughter Kristina this past weekend. It was a lot of fun and hearing her laughter and then her brother's when Paul came to investigate the racket I was making, was priceless and a beautiful sound. After an hour of this, I did fall asleep on Kristina's bed. She kindly covered me up & tiptoed away. Paul announced he'd wake me up and punched me in the stomach. Ouch! He means well. Surprisingly, he's usually the one who treats me with "kid gloves". Off day maybe?

I have been reading a book at night, which has been unheard of for me in the last 2 years. I'm reading "The Help" and it's really good. Sometimes, I can read a whole chapter & others one passage. I do like that this book will separate incidents within the chapter by putting several spaces between them. This way I feel like I can accomplish something before the fatigue pulls me under it's spell.

I started "My MS Yoga" again & even had my husband join me twice last week. It was really funny hearing him moan & groan over the positions. I kept having to stop to show him the right way to do it. He used to be such a health nut and was really into muscle training years ago. I was amused at the basics he forgot, like if a stretch hurts, you aren't doing it correctly. The second time, I saw definite improvements. I am trying to show him how his back can improve and have less pain by joining me. We shall see. ;)

I caught up on some of my TV shows and watched a couple of movies. I cleaned out a few drawers and had some chats on Facebook with some old friends & repaired some old wounds with friends close to home. I even have made some new friends along the way. I cleaned some things around the house that were bugging me too.

I actually feel better now. I felt as though I was completely off track with my "Year of Tammy" pledge, but I see now that isn't true. I am having my year of Tammy, but with all of the unexpected twists and turns that life throws are way. I have done many things I wanted to do this year. I may not have my "Schedule" written down to follow yet, or am I committing to it daily, but I am doing more than last year.

For me living with MS, I do need to keep taking my breathers and slow down. Health needs to be my number one priority because when "Mom" goes down, so does everyone else. I will take my moments of coffee with my neighbor or an old friend & yoga with my husband. Schedule a phone date or read a story to my kids. Watch a favorite show or a movie I love. Read a good book, or 2 pages, at bedtime. Put my feet up to take a nap or help someone I love accomplish their goal while we visit. Yes, I may be stretched thin at times, but I am doing more for me and in turn I am helping to show my loved ones I have time for them even more when I take the time for me. That's my Brain Revelation for the week! Now, go do something for yourself and do it guilt-free.

Wednesday, April 11, 2012

The Power to Change Your Mind

Within our lives we all have endings and beginnings. Some are more dramatic than others, like a break up or a death in the family. Others may be less earth shattering, like starting a new diet or changing a bad habit. All have an ending to how life was before that event and how life will be in the future. It's that moment when you decide how you handle it. That moment that changes you. That moment when you know what you will and won't do. That moment that you begin to take charge of the situation.

This isn't necessarily immediately as the change occurs. Of course with a relationship end or a death of someone you love, there needs to be time to come to grips with the change. You need to grieve the loss and accept the ending you were not expecting. This takes time for your heart, your mind and your soul to come to terms with it and then decide what happens next.

Some people take longer than others. Some people move too fast and usually have more setbacks since they never real dealt with the pain of the change. When someone dies, you hear people begin the statements of "Everyone grieves in their own way" or "There is no right or wrong way to mourn". All very true. We also need to know ourselves and when we have taken longer than we actually need.

Being diagnosed with Multiple Sclerosis (MS) is very similar to a death, as the time before and after changes you and the path of your future. Before you were told this news, there were hopes and dreams that you had that did not include having a life changing illness. Some people even accept it as a death sentence. There are people with MS whose first thought was "Am I going to die?" "Can I have children?" "Will I get married?" "Will my family have to go on without me?" "How will anyone love me now?"

It is a very scary prospect to hear these words, "You have MS". However, it is not life threatening. You can still have children. You can still get married. Your family will need to make adjustments, but you are still an important part of it. You are just as loveable as you were before you heard those words. "You have MS."

There is a grieving process. The loss of what you thought before MS and the fear of the unknown. The loss of how your body used to react to how it will react in the future. Having MS is something to learn about and what steps you need to take that make the most sense to you. This involves what types of medication you will take or not, what steps you need to take to make your movements easier, if you need other therapies and what other accommodations you will require.

These steps are all practical or necessary, but they don't necessarily deal with how you "feel". This is the grieving process as it reaches it's end and then turns into the "poor me" stage. This is NOT depression. Depression is a serious condition and needs to be addressed by your doctor. We all know the stage I am referring to and we don't always realize we are there. The point when you have all of your information and know all of the solutions, but we decide to do nothing because it "doesn't matter anyway." These are the moments when you know in your heart you are at a crossroads and can make a life changing choice. This is the moment when you take control or give it up.

We all have the power to focus on the good or the bad. We can be positive or negative. No one forces you into this choice. You may be there out of habit, but we all know habits can be broken. "Focus on the silver lining". "Find your smile". " Be positive". These are all things I try to do in my life and others here me say. I know. Annoying, right? Maybe, but it helps me. No one can be "Merry Sunshine" all of the time, and trust me I'm not, but we have to try. I do. I try. With each step I take, I try. Trust me, I slip. I fall and I say words that I hope my children don't repeat, let alone hear. I still find the moment to pick up and try again. Otherwise, what's my alternative?

I have MS. Should I be miserable forever. Should I just check out of my life and tell myself, "my family will be better off without me."? Do I not deserve to be happy or to have a future? I don't think so. This is MY moment. My moment to push through and find a better way. It is not easy, but I can't give up. I won't give up.

We all have choices in our lives as frivolous as choosing the color shirt we wear to how we raise our children. We make choices to get up and go outside or to stay in bed and hide under the covers. If your husband leaves you, are you going to give him more power and allow your life to be full of sadness? If you lose your job, does that mean you can never find work again. You lose a friendship and now you lose yourself? You have MS and now nothing matters?

Choose YOUR next step. Take control of YOUR life. You decide how you handle it. How you will move forward. Find your happiness for YOU! No one and nothing can break you unless you let it break you. We as a whole need to speak up, stand up, be free, be more, take control and do what is best for ourselves.

If you have fought with a friend, your child, someone you love, why are you waiting to make peace? If you have had a life changing blow, how will you find the positive spin? Anger & pride get in the way of love. Sadness and resignation hold you back. It may not be easy to push through, but with each step you can get closer to the life you want. You can get closer to making your dreams come true. You can find new ways to make things happen in a good way for you.

With MS, we may need to make changes. We may need to approach things in a different way. We may have limitations, but they are not road blocks. We have a choice and with that choice comes power to control how we handle the next step. Take your control back and find a way to see the silver lining, find your smile and be positive...for yourself and the ones you love. MS is a new part of you, but it's not the only part.

And Now A Word From Our Sponsor...

Well, me really. The word is from me. I wanted to let anyone who is checking in on my blog still that I will be making weekly entries from this point forward. I will be posting by the end of the day on Mondays. Other entries may also follow, but if you are looking to check in and "know" you will find something new, Tuesday morning should find you satisfied to that order.

And now you may return to your NOW regularly scheduled blog, "Pick Tammy's Brain". :)