The Three Ring Circus(Or Help, Me I Wanna Get Off This Ride)

Here I am again
Jumping through their hoops.
It wasn't fun the first time,
Shocking loop-de-loops.

Their little acrobat.
Floating through the sky.
Doing this familiar dance.
My brave face helps me lie.

I am up. I am down.
I am twisted all around.
I cannot keep going up,
When they keep pulling down.

"Prove yourself again"
"Our info proves you wrong."
I have all the proof I need.
My data is a mile long!

You pause as I speak.
I've thrown you off your game.
It's not enough, I fear,
To forget why you came.

I tripped you up, for a moment.
You stumble on your pride.
It doesn't last long enough,
You have clout on your side.

"Repeat this test."
"Now let's do another."
"Shock her nerves".
"Let's make her struggle."

"Pee in a cup."
"Give us blood."
"We'll beat you down,
Drag you through the mud."

"Dance like this."
"Skip like that."
"Don't talk back
Or you'll regret it."

"Do you want your meds?"
"Do you want your scripts?"
"Then do what we say."
"Perform all of our tricks."

"We have you now."
"Right where we want you."
"You should be confused."
"This isn't even about you."

"Don't you slip."
"Not even a little bit."
"You'll go back to the start."
"Do you remember that part?"

"Back into limbo."
"Where you felt so defeated."
"When you were so alone."
"Broken & beaten."

I thought I was passed this.
That I could move on.
But someone has decided
To try to prove me wrong.

I'm not afraid of her.
But I must play their game.
As much as I hate it.
It all ends the same.

If I rock the boat,
I'll give them more power.
I can't have that,
So, for now I'll cower.

Please, God, send me someone
To help me rise above.
Pull me up from the ground.
Fill my heart back with love.

Make me strong and brave
Help me pass through their trials
I need to be myself again
I need to find my smile.

Feeling powerless equals helpless
And that is far from who I am.
Let this Three Ring Circus finish
So I can live my life again.

Tammy Malkowski 5/31/12

Stupid Summer Heat

Not my most clever title, that's for sure. Not happy with this already hot & humid weather in May, but I am not surprised. I told everyone I could that there would be a price to pay for this mile/non-existent Winter. I know the heat will be bad this year, so I will be online much more since I'll be a virtual prisoner in my own home. Hey. I just got that. "Virtual prisoner" trapped "online". Get it. Look if I have to explain these things to you then it'll be a long Summer. ;)

The bugs will be bad too. No ice and snow to kill off half of them means bug bites galore. And the fish flies. Oh, my Michiganders on the Eastside. The fishflies will rival the Summer of 1989, I am quite sure. This I do not look forward to either. As I write this I have a pack of ice on my lap. Yep. You read right. Is it helping? Not really, but I'm making the effort.

I have to relax and focus on my book writing and re-direct my "Year of Tammy" back to, well, Tammy. I guess this will force that issue as well. In a few days, I will make my bi-annual trip up to Chesaning, Michigan to Cropping Daze Retreat to scrapbook and be pampered with gourmet treats and time with my mom. This will push my Summer into the right direction. Thankfully it has one of the essentials I now require with MS. AIR-CONDITIONING!!! *sigh* I hate the air conditioning. I prefer open windows and a breeze, but MS is in charge of this one. Stupid Summer Heat.

My Thoughts Are Racing in My Mind

Go! Go! Gooooooo!!!! This is me the past 2 weeks. Some days I am completely on autopilot. I have to "fake it til I make it" and I am trying hard. The only problem with all of this is I have MS. No, really, I do. You do know what this blog is about, right? (Well, I still have my sense of humor.) Yes, I am funny. I thought it was funny. Maybe I'm crazy instead of funny? Hmmmm, ...oh well. There are worse things to be in life.

Back to my thoughtful race. I have this "Family Game Night" fundraiser that I created to support the NMSS. It is in 3 days. Wait. 3 days? THREE days? THREE DAYS!!!!! Argh!!! ok, breathe. It will all be okay. I know in my heart it will work out. I have to have faith. This year will be my "learning experience". I am keeping track of what I have done this year that I don't want to repeat and things I will change or leave the same.

It's the not knowing that is getting to me. Will people come? Will kids come? Will they have fun? Will too many people come? What if we run out of food or what if we have too much left over? Will I embarrass myself? Will I do the NMSS proud? I hope so. I am trying. I really am.

Nap time doesn't really fit into my schedule when there is so much to prepare. I'm not behind. I'm actually on schedule with what I need to do. It's just that B*tch, MS keeps coming around and trying to make my legs buckle. She wants my hands to shake and my words to slur. She wants me exhausted & in bed. I keep telling her "no.", but I can only hold her off for so long. Clearly, she isn't taking the hint that this is not the time to mess with me.

Truly, though, what the heck can I do to her. She IS Multiple Sclerosis & my only method of attack right now is to ignore her. I don't want steroids, but that usually puts her in her place. My MS Yoga can usually hold her off a little longer. Drinking my water does too. There are some things I can do, but finding the time right now proves challenging.

I know I need to slow down & I am trying. I don't want to leave for my getaway to Cropping Daze Scrapbook Retreat and be exhausted. I want to enjoy my time there. So I am asking for more help. I am getting my butt in bed earlier this week. I am trying to make my health a priority. If I don't, who will? No one knows your body better than yourself. So while your thoughts go racing through your mind, add the one about putting your health first, or at least put it in the top 5 on your priorities list. Besides, no one will win the race in your mind. It's on a continuous loop, so make a pit-stop & relax!

Sleep Walking

My brain is on overload with all of the things I have had to do for myself, my family, my kids and their school and for the fundraiser for the NMSS. I am so tired, so tired, that I believe I am sleepwalking through life right now. It's not good to be this tired. I want to slow down, but at this point so many people are depending on me and if I don't do what I need to do it will all fall apart.

I have people who have volunteered to help me, and I am grateful, but there are so many more places I need help and I don't want to put anyone else out. They have their own lives too. My husband said today that if I end up sick or worse it will be "your own fault". I said "Don't say that. It is NOT my own fault. I am asking for help & people are giving it, but there is so much more going on. I may have planned the things I took on, but the kids deadlines and school events were not cleared through me. I didn't plan for all of these things to converge within a 3 week period. People are helping, but I need so much more than anyone can give."

He took this as he isn't doing enough. This is so far from the truth because he is helping and he does do what he thinks he should. It isn't that anyone is NOT doing enough. It isn't anyone's "fault". Just like it isn't "my own fault". I'm not asking for sympathy, but don't blame me either. I am telling people, I'm overwhelmed. I'm telling people my MS is starting to flare. I can feel it. I can't stop it. I can try to sleep and try to slow down, but the responsibilities are still there.

I'm learning with this fundraiser what to do differently next time. I know what I need to leave til the end and what should be secured months in advance. I am learning that I need to firm up commitments sooner and ask more people to volunteer for the actual event. It is a great thing to help out a cause like the National MS Society because I feel like I need to give back and help others like myself. The only true problem is that MS doesn't take note of your responsibilities. MS doesn't care what time it is or who needs you right now. MS doesn't care that you can't sleep in or take a nap. MS takes over when it wants and how it wants. It doesn't care that you are sleepwalking through your days. It just takes over and too bad for you.

On that note, I need to go to sleep because as of right now, I'm giving in to MS for the night. Tonight's Score: MS 1 ME 0, but tomorrow is another day, Scarlett and I don't give up that easily.

Control Your Own Mind

Hello Everyone,
Today I would like to discuss being your own advocate. In life this is important, but when it comes to your health it is even more crucial. I hear people complain that their doctor doesn't listen to them or that the doctor is too busy to talk to them.

I'm hear to point out that not only is that ridiculous, but you should never allow yourself to be in a position where you are at a disadvantage with your doctor. If you don't like the doctor you can always switch, but most people find that a hassle. However, if you choose to stay with this doctor, you need to start speaking up.

Remember this is YOUR body & YOUR mind, and no one will ever know your body like you do. Also, you are PAYING this doctor to treat you. The doctor's job is to help you stay healthy and treating you physical is only one part. Treating you with respect is also a requirement. It shouldn't even be a question.

Easier said than done I can hear many shouting at me. I know you're in the paper gown and it's hard to stand up for yourself when you feel so vulnerable. Even if you aren't in the paper gown, when the doctor walks in you immediately feel like he/she knows more than you so you'll just do what is said. Wrong! Yes, doctors did go to school for a long time to learn all about medicine. I believe that is wonderful and we are very grateful to have them learning all that we don't know, but there is more than that to consider.

Medicine is always changing and doctors are always learning as a result. Not all of them have the time to keep up on research or new developments. They are not infallible and it is important that we remember that. Doctors make mistakes, just like the rest of us. We are all human. Doctors also may not realize how they are treating their patients because their days are so overbooked they can become more focused on their schedule than spending more time with their patient. I am seeing a change of this more & more as doctors are focusing more on "patient care".

If you don't communicate with your doctor than they will be operating without all of the facts at their disposal. Arm yourself with a list of questions. I keep a notepad on my counter the week of an appointment & every time I walk by it I can add a new question. I forget once he comes in an starts asking his own or telling me what will happen next. If I have the paper than I can look at the end & tell him I had some more questions for him.

Also, write down any new research, theories or medicine you are interested in learning more about or even trying. If your doctor is not willing to listen to you and you have tried all you can think of to break through that. It's time to move on.

If you don't take control of your own mind and body then you can only blame yourself. Our health truly is the one thing that keeps us going to be able to participate in this thing we call life. Don't be passive in your own health care. Grab hold and take your control back!

Walking with Purpose

Putting one foot in front of another and trying to acquire prizes & donations for the Family Game Night. More generosity from Anne Poppe fro Tastefully Simple, from QDoba in Roseville, and FedEx Office in Roseville too. Happy so many are willing to help. Sorry that I have so much energy and drive in the morning and crash in the afternoon. I made some more progress with the schools so we can try to get more kids there. Fingers crossed as I keep walking with purpose. Now a little nap before dinner. Shhhhh, don't tell anyone. Maybe they won't notice....

Brainstorming for Fun!

Hello Everyone,
Today is a new day and we have new goals! Now my focus is shifting onto the National MS Society Fundraiser that I have created. I am hosting a "Family Game Night" to support the NMSS through our team The Brain Farts. This will be my first fundraiser that I was completely in charge of, and I am a little nervous. At night I reach terrified. I wonder if anyone will come despite all of my advertising efforts. I figure this will be a complete bust or a huge success. You know me, plan for the worst and hope for the best.

I came up with this idea because I enjoyed the "Movie Nights" hosted at our elementary school. Families would come to hang out with each other. Originally I had decided to do that, but had trouble finding a venue. Also with worrying about technical difficulties, I decided to think of something else.

As I was brainstorming, I remembered the campaign by Hasbro to bring back "family game night". I always loved this idea because some of my best memories are from playing games with my mom & my grandma and all of my sisters. It was always fun and it slowed you down enough to put your focus into a game that allows you to interact with someone and have fun. And this time it's live & in person! So "Family Game Night" as a fundraiser was born.

We want to have simple games so families and kids can move between games & try new ones. Each game will have someone there to help with rules, set up and to referee, if necessary. Plus dinner with pizza, chips & a drink for $3! We'll have a Bake Sale, Silent Auction and 50/50 Raffle. All children will receive a gift bag to take home filled with some surprises and coupons from vendors who have sponsored us. For example, The Dairy Queen at 10 1/2 & Harper in St. Clair Shores, MI donated coupons for the kids for a free ice cream cone. The 7-11 on Masonic & Harper will be donating free Slurpee coupons. We have Ye Old Toy Shop on Harper between 12 & 13 Mile Rds donating toys for the silent auction. Secret Treasures Resale and Polka Dot Boutique on Harper between 10 & 11 Mile Rds is also putting a fun basket together.)
That's just the beginning! Come join us to find out more.

If you'd like to come to play or to volunteer, please let me know. If you'd like to donate money or prizes to help, or food or drink donations, my email is kristinas_mommy@yahoo.com. I believe if we can get kids there to play, they will learn more about what MS is and have fun!!

With every new idea,I feel more alive and at my purpose for having MS. Advocating & educating people is a journey I feel passionate about. Next year I have many ideas to try, but I think I will space them out a bit in 2013. ;)