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Monday, December 6, 2010

Mind-FULL Tears of Joy!

Happiness. Happiness and hopefulness is what I feel today. Hallelujah! Good things can happen. Today it was reported that researchers from the Universities of Cambridge and Edinburgh have made a discovery that could lead to Myelin repair in Multiple Sclerosis. Myelin sheaths protect nerve fibers in the brain. These nerve fibers are important as they send messages to other parts of the body. The scientists believe that this research will help in identifying drugs to encourage Myelin repair in multiple sclerosis patients. (Below are some excerpts from the article I found at http://www.cambridgefirst.co.uk/news/new_possibility_of_reversing_damage_caused_by_multiple_sclerosis_cambridge_university_researchers_1_745661 )

Professor Robin Franklin, Director of the MS Society’s Cambridge Centre for Myelin Repair at the University of Cambridge, said: “Therapies that repair damage are the missing link in treating multiple sclerosis.

“In this study we have identified a means by which the brain’s own stem cells can be encouraged to undertake this repair, opening up the possibility of a new regenerative medicine for this devastating disease.”

The study, funded by the MS Society in the UK and the National Multiple Sclerosis Society in America, is published in Nature Neuroscience.

Professor Charles ffrench-Constant, of the University of Edinburgh’s MS Society Centre for Multiple Sclerosis Research, said: “The aim of our research is to slow the progression of multiple sclerosis with the eventual aim of stopping and reversing it.

“This discovery is very exciting as it could potentially pave the way to find drugs that could help repair damage caused to the important layers that protect nerve cells in the brain.”

Multiple sclerosis affects almost 100,000 people in the UK and several million worldwide. It often targets young adults between the ages of 20 and 40.


[The rest of this is Me again]

This is the first real step that shows promise towards a cure!! Do you realize what this could mean? We could reverse the effects of MS. Possibly get rid of it all together. I have Relapsing/Remitting MS which means it flares up and calms down. Basically it means I can have episodes that I feel really bad and other times where MS is just bothersome. This research not only will mean something for others with Relapsing/Remitting MS, but for people with Progressive MS... Oh, the possibilities. Primary Progressive or Secondary Progressive really has no treatment except for symptomatic. The symptoms and effects of MS just become progressively worse. There is little that can be done and that is even more frustrating. This could be a huge benefit to these patients as well.

I am jumping for joy at the possibilities of what this research will mean. For what this can be a stepping stone towards. Amazing! So today, I will not be mindless in my cry of tears. I will cry mindFULL tears of joy!!! Shed a few with me. <3 <3 <3

Thursday, December 2, 2010

The Spoon Theory (borrowed from www.patientslikeme.com)

My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time.
We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick.
I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS.

She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know?

I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS.
Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity?

I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables.
I looked her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons.
The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew.

If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become.

I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of spoons. But when you have MS and you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet.

I've wanted more spoons for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon.

I practically jumped down her throat. I said, "no, you don't just get up. You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!"
I quickly took away a spoon and she realized she hasn't even gotten dressed yet.
Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning.

Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spasticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MS...its just not that easy.

I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, they are gone.
Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons. I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling.
So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?"

I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."

It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one.

I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my spoons.

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry.
I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste them, and I choose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness.


Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.

*******************************************************************
I did not write this. I first read it on NMSS Facebook page and later on other sites. It recently has become harder to find which I think is a shame as it is very inspirational and helpful to people who have any type of chronic ailment. I believe the original version was written about Lupus. Christine Miserandino is the woman I see most credited with this story. Whomever she is, I want to personally thank her. ~Tammy Malkowski

Thursday, November 11, 2010

Dreams Can Change ( A Poem)

Dreams Can Change ( A Poem)

As I child I had dreams of being a mother & a wife.
God blessed me with both, such a happy life!
After the birth of my son, the symptoms began.
My life as I knew it would not follow my plan.

It threw me off track & forced me to change.
Being a mom had new meaning that was different & strange.
My body was in charge now; my plans were shown the door.
My body could not do the things it had done before.

I had to change my approach & find a new way of life.
I could still be a good mom and a loving wife.
Strength would be my focus, being positive my goal.
I could not allow my body to change “me” as a whole.

At my lowest I’d cry as my pain turned to doubt.
To grieve the loss of a life planned out.
I’m human and felt the regret & the loss.
Of a body that became an obstacle to cross.

To stay in this frame of mind was just not me.
If I was to live up to the mom I knew I could be.
Children want love & attention, MS can’t take that away.
I needed to focus on my love and hope to brighten their days.

I would show them I’m brave while facing my fears;
Embrace my new life while smiling through my tears.
MS is an obstacle, a struggle; that’s true.
But my children wanted guidance to tell them what to do.



We could play board games, read stories or draw pictures to start.
I helped with homework, or cuddled & counted stars after dark.
On good days, I tried dancing to our favorite songs.
Looked as they screamed, “Watch me!” at the park in the sun.

These days I needed a nap, but I relished the moments of good.
For the bad ones always return and I don’t dwell on “I wish I could…”
“Budget your time”, “Live in the moment”, “Grasp life by the horns”.
All clich├ęs, but all too true when bad health leaves us torn.

I am still myself, my heart & spirit are true.
I may need to slow down, but I’ll never give up what I do.
My family is what I need to face each day with a smile.
MS will never change that. Giving up is not my style!

~Tammy Malkowski, 11-11-10

Darkness & Light (A Poem)

Darkness & Light (A Poem)

Today, I woke and wondered what I would find.
Would MS affect my body or just my mind?
Surprise implies something good or fun,
But MS truly doesn’t offer either one.

Although a surprise is not knowing what to expect.
I still approach my morning with a smile; not regret.
I could be sad or angry over what my health has brought.
I believe that God has given me a path and I cling to that thought.

I rise before the sun & I try to find my smile;
Even when each step I make feels like a mile.
MS brings me a challenge that I try very hard to meet.
I struggle when MS is at it’s worst and start to think I’m beat.

There are days I feel I can’t go on.
That MS is too much to bear;
I wonder how I will find my positive spirit
Or even the strength to even care.

Dwelling on the struggles & challenges MS can bring.
May be some peoples approach, but for me, it’s not my thing.
Each day brings my body a new surprise.
I never know what will come as the sun does rise.

In my mind, I decided, how life was supposed to go.
Health, conflict and relationships effect how we grow.
I may be unable to do many of the physical things,
But no one has a guarantee of what their life will bring.

There are many ways to deal with stress or obstacles thrown our way.
I choose to find the silver lining to help me face my day.
No one can tell me how to live, my life is my own, that’s true.
Having a positive attitude gives me control and focus over what to do.

So I may visit the dark places in my mind,
To cleanse my spirit and leave the negative behind.
But I cannot stay here, this place of remorse.
Dwelling on pain throws my heart off course.

I’ll take care of my heart, the good & the bad.
Happiness is just as important as being sad.
Face my anger, face my doubts,
Face my fears and scream and shout.

When I’m finished, I’ll return to the place
Where I count my blessings & put a smile on my face.
Here is where I’ll find my heart,
My happiness, my place to start.

Begin your day with your own surprise.
Find your smile as the sun begins to rise.
You’re in charge of how you feel.
Be bold, be loved, be strong & be real!
~Tammy Malkowski, 11-11-10

Wednesday, November 3, 2010

Mind is Spinning

Sorry I have been out of touch. It's been a weird month for me. Some days great and others...not so great. I received my handicapped parking tag. It's "temporary" for 6 months. When I inquired the nurse informed me they rarely give out permanent tags. I responded, "Do you know something I don't know? Cuz if MS is temporary I think I should be informed." She didn't laugh. Oh, well. I see Dr. Beall on November 8th so I'll ask then. Maybe he'll laugh at my joke. I thought I was funny. But then again, I usually do think I am funny.

I was having even more trouble with my legs thru the month of September. Especially my right one. This pain would spread down from my hip to my calf. The best way I can describe this new pain to you is this: Remember when you were in school and you would raise your hand? After waiting your turn for a while, your hand would begin to hurt and the longer you kept it there the more support it needed and the pain grew. This is how my leg feels, except I can't put down my hand to alleviate the pain. Only sitting with my feet up helps. As soon as I stand it returns. This will definitely be brought up at my next appointment.

My tremor has lessened. It is back to returning only when I am really tired or have over used it. Dr. Beall will be happy to hear that news. Overall, my fatigue is not as strong. I have had some days when I could barely stay awake. Especially the last 2 days, but I feel okay today. I have had more leg "jumps" lately. All of a sudden my leg or foot will just jerk one way or another. This only happens when I am sitting or resting, but it's a weird feeling.

We are in the process of getting our townhouse ready to put up for sale. Having a son & a daughter share a room will be acceptable for so long. Eventually privacy will become a real factor. Since they are both under 10 the hurry isn't great, so I figured it's the perfect time to get the ball rolling when there is no immediate need. We will be staying within the same townhouse community, just moving to a 3 bedroom instead of 2 bedroom. We love it here! Frankly, I wish we had the extra bedroom because I love the unit we already own, but wishes like these don't come true. Facts are facts and we need to do it. Getting the house ready is a task in itself. I need energy to accomplish this. Plus to inform my family that keeping our home clean is about to become a bigger priority. I'm not sure they are truly prepared for that.

I am still trying to be upbeat and keep smiling. One indication of my health lately would be my lack of Facebook time. I realize not everyone has joined this group or finds it a daily part of life, but I have. It has allowed me to meet many new friends and to find support for MS from people who understand. If I'm not checking in during the week, then people know I must not be feeling myself. I actually missed hosting my shot parties for 2 weeks! This is a huge deal for me since I am there every other night with a rhyme about giving our shots with an invite to do ours together. I did host one last week, but I've missed 2 more this week. Hope I will be hosting on Thursday night.

I actually missed my shot altogether last night. That's a first for me. I couldn't get up the stairs and the kids were asleep. I leave my supplies next to my nightstand and I just forgot earlier. I will resume my normal schedule tomorrow. I will check to see if there is anything else I need to do, but I don't think so. The way this past few weeks have gone. Good, bad, up, down, I feel like a child's toy top. My mind is spinning from all the changes. I'm done with this ride. Time to get off and try a new approach. Come on, Body and follow my lead!

Monday, September 27, 2010

Brain Train

Hello Family & Friends, I decided last Monday to set some new goals for myself. Last week my goals were to drink 8 glasses of water a day and to start doing this MS Yoga DVD I received for free back in March. So I did all I was supposed to do.

I really like this yoga DVD! It was sponsored by one of the pharmaceutical companies who hired a yoga instructor and a neurologist to speak on the DVD. There are 3 different selections to be made from the menu. The first is called Foundations. This one gets you set up with the basic moves and is set at a gradual pace. I really was impressed that they show all levels of ability in the program. Some were a little more advanced, others were using a chair or other modifications to assist themselves to get into the positions or even modifying them. I never felt like I couldn't keep up. It is reiterated throughout the set by the instructor to go at your own pace, to do what you need to do on that day. So if you feel you can push further then go ahead, but if it's a bad day, then go slower.

The next level is called Transformations. I haven't reached this level since I just started, but I did watch it on fast forward to see what other moves they were adding. It seemed just a little more advanced. It seemed to last longer and repeat more of the movements. There were some new positions that they added also. Nothing seemed too difficult in theory. I look forward to reaching this level.

The last level is called Restoration. This is simply for relaxation and stress relief. I did this one time this week. It was very nice. Good for a day that I am stressed out and looking for a little relief.

I definitely could tell a difference this week in how my body felt and moved. I definitely felt more relaxed and less stressed out. I even feel a little lighter. Maybe it will help lose weight, but that not is the reason I am doing it. I did it everyday except Sunday. Sunday is my big paper route day so sleep is more of a priority.

I saw Dr. Beall on Tuesday and he remarked at how limber I was. I hadn't even told him about the yoga yet. He said to keep it up and that would really help me during a flare and maybe lessen their occurrences. Bonus! He felt I was doing well with the exception of the right hand tremor. That brought some concern from him. He wanted to start steroids to help get rid of the tremor, but I asked if we could hold off. He said that would be fine. I really don't want to do steroids unless I am really bad all over. It can't be good to have steroids in your system that often. I also told him that I didn't fill the prescription to calm the tremors because I didn't want to add another med if it wasn't that bothersome at this point. It is happening more often so I may change my mind on that one.

Also he is filling out a form for me to get a handicapped parking permit. Yeah! There has to be some plus to having MS. Some people were surprised I didn't have one yet, but I thought I had to wait for a definite diagnosis of MS. Apparently they are easier to get than I thought. So once that is finished I will go pick up my permit.

This week, I am adding a multi-vitamin and at least one snack of veggies or fruit a day to my list of goals. I am not giving anything up at this point. Nor do I really plan to limit my available foods. If I want a cookie, I will have a cookie. If I want dessert I will have that too. I figure if I start adding in good habits the other things won't seem as important and leaving them as an option won't feel like I have deprived myself. I will keep you posted on my progress with my new goals.

Lastly, I started having some more difficulty walking again. I was doing very well last week, but last night, I tried to stand up from the couch and fell backward onto it. My feet were almost completely numb and my thighs seemed numb or just odd. I can't explain it really. It was as if my thighs wouldn't support my body. Dave had to help me to the stairs as I took baby steps while holding onto his forearms and he walked backward. I hoped sleep would bring relief. It didn't. I woke this morning and as soon as my feet hit the floor, the night before came rushing back to me. The feeling was still there. I was nervous, but I needed to go to work.

I could've called in, but both my boss and manager are on vacation and they are the only ones who know about my MS. I didn't know how well it would go over without them there. Well I do know. The other manager would've freaked out. I could've woke up Dave too, but I didn't want to ask him. So I went on my own. I moved really slowly and eventually finished. I almost fell a couple of times, but I caught myself.

When I got home I considered skipping the MS Yoga, but I thought it might help. Maybe skipping a day was why I felt like this. It wasn't. I did do it. I took the option to modify my workout based on how I was feeling. I held onto the wall for support and didn't push too hard thru the stretches. I felt like I was gonna pass out or be sick to my stomach thru most of it, but I didn't. I am glad I did it because I want it to be a part of my routine. My legs are still hurting and feel weak, but that is just part of my life now. When I wake up, MS surprises me by letting me know how my body will feel that day. Forrest Gump had no idea when he mentioned the box of chocolates how profound he was being. I really never know what I'm gonna get! No matter what though I will ride this Brain Train and find a way to enjoy the ride. In this Train I am the engineer, so look out world here I come!! Woot! Woot!

Monday, September 20, 2010

Mind Control

Hello All, I see Dr Beall in the morning. I suppose for a follow up from last time. Not really seeing a reason to go since I don't need is assistance right now. Thank God Summer is over!! This Summer was brutal on my body. I tell people that I slept the Summer away and I am not totally exaggerating. The heat & humidity trapped me inside the house and brought out new symptoms like the MS Hug. My flare-up lasted from the end of June until the end of August. That's a long run and I certainly wasn't ready to give up, but MS was a worthy opponent this time.

I am feeling better as far as fatigue goes. Fatigue is probably one of the hardest things to deal with from MS. The pain, when it rears it's ugly head, is definitely tied for first place. When I am not exhausted or in pain, I find it easier to face the rest of the challenges of MS. For example, lately I have been experiencing tremors more often. While noticeable it isn't bothersome enough to warrant more meds or to make life more difficult for me. I just kinda roll with the punches or go with the flow. Love the cliches today?

I was speaking with a good friend of mine recently, who doesn't have MS but faces her own health challenges. We have recently re-connected due to our shared experience of our own bodies rebelling against us. In this conversation we both concluded that while the physical limitations are challenging, and we have to be creative to live our daily lives, it did not compare to the mental or cognitive lapses some people can experience. I have had these cognitive issues in the past and blogged about them here. Times where I was disorientated or couldn't think of the word I wanted or slurred/stuttered or simply was trying to listen to a conversation and feeling the whole time they must be speaking in a different language. These episodes scare me more than the physical.

If my MS path leads me to a wheelchair then I will adjust, I will deal with it and move forward in my life. I am in no way implying that having to use a wheelchair temporarily or permanently wouldn't be upsetting. It is definitely a cry worthy moment. I would work through it though. If the mental or cognitive issues became permanent, I don't know if I could deal with that as well. With physical there are all kinds of tricks and aides to assist a person. If you can't type there is a vocal recognition software called the Dragon that'll type for you. Can't Walk? There are canes, walkers & wheelchairs. Hands shake or experiencing spasticity or loss of manual dexterity? There are meds and physical therapies to help overcome or lessen those limitations for you.

The mental problems have been proven to be less when you keep your mind sharp & active by doing things that continue to challenge your brain. Some people like mind games like Suduko, or crossword puzzles. Something to stimulate the mind can help. No matter what though I will never give up being the person I am.

I do have a new symptom that appeared about a week ago. My right leg has been either very rigid and hard to walk on or it makes me walk with more of a swagger. If you see me I may exaggerate this just to get a laugh. I call it my "Standing Worm Move". Like that old dance move from the break-dancing era people did on the floor. I've perfected it and do it while WALKING! Ooooooooo, Aaaaaaaah. I know. I am impressive. ;)

This week I have decided to try something new. I haven't really been combating my MS physically in any way so I have 3 goals for this week. First, I will take my Provigil, anti-fatigue meds, every morning & afternoon. No matter if I am tired or not. (I usually only take it if I have slight fatigue. If I am really tired I don't bother.) Second, I will drink 8 glasses of water a day. I used to do this, but with bladder issues, etc, I have gotten away from it. Water is good for you and it is a good start to better my health. Lastly, I will follow my MS Yoga DVD, that I have had since March in the wrapper, to help me get in better physical condition. I am curious to see how I feel in a week.

Today, I put all three of my goals into practice. I felt good. Pretty decent actually. Still have a tremor and a messed up right leg, but I felt good. I stood and glued Box Tops for the elementary school for 45 mins while the kids did their homework. Stood. Did you get that? I stood for all that time without having to sit down. I helped with homework and cooked dinner. In fact, when all was said & done, I was in the kitchen for an hour and a half with no break to be had or needed. I budgeted my time like I always do, but I felt almost normal. MS normal. This is good.

This MS Yoga DVD will be good for me. It has different levels so you can adjust how you're feeling that day. Also it has a restoration segment to help calm you & let go of stress. Bonus! Some of the positions were quite amusing. Several times I scoffed and said out loud, "Are you kidding me?" But they always had an alternative way to do it, just in case you couldn't fully reach the position they were describing. Hubby was in the other room saying, "I don't know if you like this dvd or not, but it looks pretty good to me from over here!" Pig! Men. Always checking out women and thinking dirty. I laughed though. Hey, as long as he still looks at me that way, I'll take it.

In the end, I am looking to keep as much control of my mind as possible. So these new steps may be the key to helping me? If anyone is looking to control me in any way, they should know better. The only one getting any mind control over this body is me, me, me!

Here is a link for the DVD I am using:
http://www.mymsyoga.com/yoga

Wednesday, September 1, 2010

Mental Meltdown

My last post was about finally getting the confirmation that I had known for 2 years. I don't know if relief was what I felt because who is relieved to confirm a disease? Satisfaction? Maybe on some level because I knew I was right, but that isn't it either. A little smug? Kinda since some people still felt I was looking for attention or deluding myself, though they'd never say it to my face. Sadness? Not really. I dealt with the idea of having MS in my heart in November of 2008 when I got the "probable MS" answer. Anger? Nope. Not that one either. If I had any anger over MS at anytime, it would be for my husband & children and what my having MS means to them. So what was I feeling?

At first, I couldn't understand how so many of my family & friends reacted as if this was brand new information. I mean, we all kinda suspected this was true. Many had accepted that it was true along with me, but still there was a reaction. I expected the responses of "I'm sorry that you have MS, but I'm glad you finally know for sure." It wasn't Earth shattering after all. But others reacted differently. Some cried, some hugged me a little tighter, some were asking if I needed anything. What would I need? In my head & heart nothing had changed from the day before the confirmation. I still am the same. I still take the same meds. I still feel the same, look the same, act the same. But people were different.

At first I was a little angry about it. Not at them personally. I know they love & care for me. I know many were holding out hope that it was something else. Something different either for themselves being unable to deal with knowing someone who has a disease like MS or unable to comprehend MS as a possibility at all for me. It made me feel like they didn't believe me. That they were among the ones who thought I was wrong or somehow living in a fantasy world where I can have attention for being "sick". I talked it over with a few people to try and work it out in my head. This helped me.

Then a funny thing happened to me. Not funny HaHa, but unexpected. I had a reaction. About 5 days after the confirmation, I was preparing my injection. I was tapping the bubbles out the top of the syringe to make sure it was ready for me. I was checking to make sure I measured the dosage correctly and all of a sudden I noticed myself. Almost out-of-body. I thought, "When did this happen?" I looked around at my husband and then at the bottles of pills sitting in the kitchen and thought, "How did I get here?" I'm the person who has hated shots her whole life. I'm the one who crossed the street until she was in her 20's when she saw a squirrel because a story in the 70's was on the news about rabid squirrels. They claimed if you were bit by one it would result in 40 shots in your tummy. That was enough info for me. Yet here I am, ironically, injecting myself...in my OWN tummy. "How did this happen?" I did my shot and iced my tummy and then sat for a minute. "I have MS" I thought. I have Multiple Sclerosis".

I stood up to head up to bed. My husband stood to hug me good night. I didn't let go. I hugged a little tighter, a little longer. HE said, "Are you alright?" I said, "yes". I kept standing in his arms. "Are you sure?" He asked. "Yes, I am. I love you. I'm going to bed." He answered the same & I went to bed.

The next morning while delivering papers, I thought of my reaction. My mild shock or realization because, again, this isn't brand new information. And I realized something. I had known from the moment I hit the ER in March of 2008 that MS would be the end result. I had done my research. I had experienced all the tests...twice. I had 2 neurologists, one a nightmare and the other my avenging angel. The one to help me reach the conclusion I already knew in my heart. I had 4 MRI's, 1 Spinal Tap and been poked & prodded. I looked into any possible alternative diagnosis that family & friends gave to me. I fought against the naysayers to prove to them that it was MS. That I wasn't crazy. That I hadn't manipulated the neuros, my family dr, the pharmacy & the National MS Society into treating me like I have MS both mentally & physically. I absorbed info in books, on websites and found ways to help myself through many symptoms and gave in to the help that was offered and that I knew I needed for myself & my family. I found a lifeline, a support group, if you will, online and made many valuable friendships that grow everyday. Some by number, but many through our hearts. I did all these things, but I never stopped to think what the confirmation would mean.

I HAVE MS. I HAVE MS. i HAVE ms. I fought for so long, I didn't take it in. The finality of what it would mean. The course my life will take. The answer I knew that will now & forever be true. You were right, Tammy. Yippty Do For You! Congrats. Now what?

Nothing really. I face it. Basically like I have been: With a positive attitude, information, a good sense of humor and family & friends. I keep my online Facebook page and NMSS Page open to support me and for me to give my support to others. I've said before that I felt I was lead here, to MS, for a purpose. Maybe it is to take my "mom qualities" to the NMSS Page and help where I feel needed? They get support and I get to feel appreciated for being "everyone's mom". MS is still NOT a death sentence. It isn't any real sentence because no one's path with MS is the same. I will find similarities, but I can't predict the future any more than anyone else can. Even the healthy ones.

I do know this. I will continue to do my physical therapy exercises that I learned. I will try to add in the MS Yoga to help improve my shape and health. I will use my cane when I need it. I will ask for help as well. I will smile & laugh & be a wonderful wife & mother. I am Tammy Malkowski. I am still me. I am still all the wonderful things I was before and I am still all the awful things too. My mental meltdown gave me the freedom to fight harder than I was before because, while I didn't give up, the fear that "improving" might postpone my inevitable diagnosis held me back. I didn't want to remain in this limbo of health, life & spirit for even longer. So my freedom is what I got.

My reaction is that the meltdown lead me to the freedom to be the smart, funny,hard-working, sarcastic, shock-you-till-your-jaw drops, amazing person that can only be me. I am Tammy. I finally had my mental meltdown. I have MS. And my life will remain as I have said from the beginning of this journey: Keep Moving Forward. Feel free to join me. <3

Tuesday, August 17, 2010

Shedding Some Light Onto My Cloudy Mind

Hello Family & Friends, I saw my neurologist yesterday and today. Yesterday he informed me that there were 2 new lesions of white matter on my MRI. He also commented that the MRI techs within the practice were the ones to see them. In the past he would have to take them to Saginaw for his MS MRI Expert to review along with himself. He also noticed the new tremor in my right hand. Well, new to him. I've been experiencing this symptom for a few months now. It comes and goes, but it has been coming out more often. Especially after physical therapy which is where I had been before my neuro appt. He asked how long it usually lasts. I explained that it comes and goes, anywhere from a few minutes to an hour or more. That it typically seems aggravated by stress, fatigue or overexertion. I told him I 'd just come from PT and had done alot of manual dexterity exercises so that was probably why he was seeing it. He wanted to see me the next day to see if the tremor was still there.

So I went today, and he observed the tremor again. Between the new lesions and the tremor remaining consistent, this met the criteria for a definitive MS diagnosis. Finally! Finally the words I already knew were true. I "officially" have MS. If you've been following my blog from the beginning in 2008, then you know I was originally told early MS or probable MS, but that I needed another documented episode of demylination to confirm definitive MS. My neuro is an MS specialist and the reason I chose him is I knew he would either be able to diagnosis me or would be able to tell me if it was something else.

Initially, I had a diagnosis of CIS or Clinically Isolated Symndrome. This can be high or low and I fell into the high category. If you place in the high category, that means you have had many of the symptoms for MS and lesions on your brain or spine. That you are most likely to receive a diagnosis in the future of MS. Since he had ruled out all other possibilities, I knew already in my heart that MS was my fate. Besides the early MS conclusion, my neuro has been treating me as he would someone in the early stages of MS. I take the Betaseron injections to help slow the progression, Provigil for the fatigue as well as the other meds to help with the symptoms. My neuro was always very clear that once he had the definitive clinical MS diagnosis, his treatment of me wouldn't change. He would treat me the same just the wording in my chart would change to reflect MS.

This only confirms what I already knew. It doesn't change anything for me. It may change things for others in my life. For those of you who hoped that the confirmation would never come, I'm sorry if this causes you pain. For those of you who thought I was crazy, or looking for attention...I was right. And if you don't know me well enough to realize I wouldn't be so delusional, well I guess that is your issue, not mine.

To be clear, Betaseron is an interferon that is supposed to slow the progression of MS. It is not a cure. It is not an exact science. It doesn't give guarantees. No one knows if I would've progressed faster without the injections or not at all. No one can see the future. All we know is we can try and make an effort to learn from mistakes, science and trust our guts. I don't follow my doctor's orders blindly. I make my own calls. Some of my meds I take as needed and others I follow exactly. I need to make the decisions that I feel comfortable with for my own health.

My neuro had suggested doing another infusion of IV steroids to get rid of the tremor, but he also advised me that we could wait a month and see if it resolves on it's own. He said it would be my choice. I decided to wait. While I believe the IV steroids can be very beneficial, I also know they have harsh side effects and I would like to limit my exposure. So I am waiting until the middle of September to decide. He also prescribed a med to take daily to combat the tremor. I have decided not to fill it. Right now it isn't particularly bothersome to me and I would prefer not to add more meds to my daily routine. If it changes then I will reconsider.

Some may feel that today is not a good day. And it probably isn't one I will celebrate. In my heart, November 2008 is when I got confirmation. Today was confirmation for everyone else in my life, medically, professionally, intimately...all who care for me in some way. Today was all of your light bulb moment. It was the moment to shed some light onto my cloudy mind. To finally see that this is the true direction for me. I will continue to face it with dignity, to remain positive and smile thru tears and laugh til my heart sings. MS will never break me. It may get in a few good punches, but I always bounce back. This will be no different. I am still me. I still will laugh, love and live because Tammy is who I am and will always be. My life is my own journey. It is what I decide to make of it. And I decide to make the most of my beautiful life. I wouldn't change a thing!

Tuesday, August 10, 2010

MS: The Good, The Bad & The Ugly

Well I can tell you that last week was filled with stress and adventure. We, my husband & I, began the week with car trouble. As I write this I am still waiting for them to finish the service. *Sigh* Anyway, my MS was really kicking my butt last week. Just feeling weak, and stumbling more...some pain, just not at my best. I had my evaluation at physical therapy and there was no improvement on my grip, so more visits have been ordered. I'm not sure what to expect from the PT as it isn't a cure, but how long can it be beneficial? I definitely can see that the exercises I am being taught can be done on a daily basis and maybe that answers my question. Using these techniques could help my overall mobility and strength. I actually commented that once I get these down I could add in the "MS Yoga DVD" that was sent to me.

This past Saturday was my 20 year High School Reunion. It was from 8pm-Midnight. As I'm sure you are aware, I am usually asleep early as my energy is limited. I intended to take a nap that day, but some other occurrences, that I will touch on next, prevented this from happening. But I had the wonderful Provigil on my side. My anti-fatigue medicine and my Darvocet for pain, as well as Ditropan to help with bladder issues. I was armed and ready with my drug therapies! As I met early with an old classmate, we discussed my MS & how I was handling it, etc. I began with telling her all the meds I was taking to (Makes a circle around her body with her hands)"Make This Happen"! ;) Basically, I explained that the nightlife and I don't usually mix, but I had taken my precautions to get me to enjoy this once in awhile event. I told her I try to stay positive & keep my sense of humor with me at all times. I said when I start tripping or swaying, don't assume it's the alcohol. I can sway on a good day! It was really a lot of fun to see everyone. No one was scared off by myself & my cane...well at least most weren't. I think one guy was put off, but that is his issue, not mine. Many asked why and some ventured into more questions. But after that, MS was soon forgotten and Tammy just burst back onto the scene because MS doesn't hold the wonder that is "ME" back for long! LOL!!

So, onto the next stresser of the week and truly the most adventurous. One of my fears has been, "What if my kids needed me fast? What if I had to RUN to them? Could I? Would I be able to do it? Would adrenaline kick in and allow me to run as fast I could?" I got my answer on Saturday morning. To be clear, this did not involve my children and they are fine. In fact so am I. I am fine.

I was at Kroger on Saturday morning doing a little shopping. I had stopped after my newspaper route to pick up some fruit and a few things for dinner. I stop here a couple of times a week in the morning. It is my "safe place". Truly it is. People know my face. Many know my name. And some know I have MS. I feel like I can be here and know, if I needed help health-wise they would assist me or find a way to contact my family. So I feel good this morning. I decide that I want to thank my husband for all his support and love. He has done so much for me lately that I want to acknowledge it with a greeting card. So I head to that aisle.

I am shopping with one of those new shopping carts that are stubby, like half of a regular cart, but with a double-decker basket. When I use this cart, I put my purse on the bottom basket and put my groceries around it. This way it is doubly secure. So my cart and I are at the card section, with my left hand on the handle and my body standing close, I'm deciding which card deserves my picking it up.

I hear a noise behind me and I start to turn to see if my cart is in someone's way when another cart wizzes past me and crashes into my cart. So I look towards the crash. Then I hear running behind me. So I turn that way, thinking "why is he running?" Then, the realization of what is happening hits me. I look under the cart. My purse is gone! I turn and begin yelling, "Stop him! He has my purse! Stop! Stop! Stop!" And I am running. As I get into full view of the front of the store, I see employees & customers yelling and running after this guy. Telling everyone who he passes to stop that guy. I make it all the way out the doors & I stop because he has already made it to the main mile road & I think that I certainly am not going to catch him. I think, my purse is gone, my phone is gone, money is gone. I also think that this idiot picked the wrong girl to do this to because I only have $8 on me. And that card isn't going very far because it's linked to my checking account and it is not very plentiful.

At this point the employees that continued running to the mile road yell to me that someone caught him. While this was happening, someone had called the police and the sirens begin blaring as the patrol cars race to the scene. The employees wave me to the mile road saying they will need my statement. So I walk to the mile road & see 3 different men holding this creep on the ground. I hear people commenting that the guys were hitting & kicking the creep before the police arrived. That the woman who flagged down the first guy was hitting him over the head with her bag of returnables. As I come into view, I see the police cuffing the creep on the ground and hauling him up into the first patrol car. They tell me to stay by the third car so I don't have to go near him. They seem to be protecting me from him somehow, although I'm not sure why since he is in custody. What can he do to me now?

I look around at the scene and see a new Jeep Cherokee that has jumped the curb and is parked on the lawn next to the grocery store. I am told that the car belongs to the first man who was flagged down by the woman in the parking lot. He apparently jumped the curb, threw his car into park and ran after the creep. He tackled the guy to the ground. As he did this, two other men from a nearby home came out and helped keep the man restrained with various tactics. It was unbelievable to me that so very many people came to my assistance. No one stood there and gawked. People were either running, yelling, calling the police or trying to stop this creep in one way or another. It was amazing!

I gave my statement and asked if I would be able to talk to the individuals who caught the man? They brought the 3 of them over to me. I hugged each of them and thanked them profusely. I couldn't believe what they did for someone they hadn't met or even seen until after they acted on my behalf. For all they did, my thanks seem so little, but it meant so much to me in my heart. Nothing really would seem to convey how I felt. The police returned everything to me. My purse handle was ripped and that was really the only damage. I was bummed about that because it was this designer purse that I actually found at a thrift shop for $3. So while I didn't lose any real money, how often do I get a designer purse? But that isn't what's important. I was surprised at how much of my stuff he was able to grab as he ran. He had my cash out of it's sleeve, my credit card and all my gift cards were strewn about. He accomplished all this while running from all those people. He clearly knew what he was doing.

Later when I went back to my cart, I realized he'd been following me through the store. He had one item thrown in his cart from each section of the store I had visited. I thought how would I even know to look for someone following me in the grocery store? Everyone is following each other as they shop. So, the police finished with their statements and then one of the officers escorted me back to Kroger. He said a detective may contact me and that a court date for the guy would be set. They informed me that they found his van waiting parked along a side street to get away faster. That was impounded.

I returned to Kroger where all the employees were recalling everything that had happened. Quite the adventure at 7:45am on a Saturday. They all came up to me to see if I was okay. The tremor in my right hand was worse then ever. Probably from the stress and the adrenaline. But I assured them I was fine. I didn't want to allow the tears that had been threatening to fall out yet. I was afraid I wouldn't be able to stop them once they started. The woman who had flagged down the first guy came up to me and asked if I was okay. At that point one of the employees said they had a meeting about purse snatchers recently. They were told that the targets were usually the elderly and at high traffic times for shopping. This situation didn't fit that profile. I explained how I delivered the paper & this is why I am usually here so early. That is when the woman from the parking lot chimed in. She asked if I was the one who gave her the Macomb Daily at the voting polls early that week with a coupon to sign up for home delivery. Yes, that was me. I couldn't believe it. At the time I did that I had walked all the way out to my car just to bring her a coupon to get a better deal on the newspaper. I never had seen her before and now she is the reason the creep was caught since she flagged down the first guy who tackled the creep.

God works in mysterious ways. How both our paths crossed. How Karma works. I did her a kindness and it was returned to me. I live my life this way normally. I believe in the mindset that you treat others the way you want to be treated. You do good and hope it is returned to you. I don't do things in order to get a thank you. I do good and remain positive in order to make myself happy and pass that along to others. I share my smiles, I share my joys, I spin my life to the positive because it is within my power to be happy.

This terrible adventure happened to me, but it propelled a lot of good from it. The sense of the community that bonded with no hesitation to help a neighbor in need, the triumph of good over bad, and the wonderful question that was answered for me. I CAN RUN! I can run if I need to get to my children. I was able to forget and run. I paid for it with exhaustion and soreness the next few days, but I don't even care about that. If I have to get to my babies, I will get to them.. MS be damned!

Monday, July 26, 2010

The Brain Train

Hello All,
It's a been a few weeks since I started the new meds. So far the bladder medicine is helping overall. I am not noticing a difference in the tremors or the numbness. But I am unsure if these are meds that help overtime or right away. I have my follow up appt with Dr. Beall on August 16th so I can ask then. I will find out the results of the MRI I had on July 11th at that appt as well.

I did start Physical Therapy. I like my therapist she is very nice and seems in tune with MS. She is insistant that she not overdue it with me and wants me to rest between excercises. That's good because when you have MS, being overheated or straining a muscle too much or too quickly can cause a flare up. Neuros used to not advise exercise for MS patients. Now they tell you to avoid it during a flare-up, but when you aren't you can try it in moderation. It is a tricky approach, but I think things like resistance training would be most beneficial. I have also heard of other people with MS finding benefits with yoga or water aerobics or other pool programs. I think the programs in the pool are beneficial because they can help with balance and keep you cool. I really wish I could find a program like that locally that lasts all year long. The only one I am aware of is the senior one offered at the local outdoor pool for the Summer.

So back to Physical Therapy(PT). My first day was devoted to my therapist's assessment of my strengths and weaknesses. Not surprisingly, her findings were that my right side was significantly weaker than my left side. Especially my hands. I had to squeeze this metal handle/grip that has a guage that measures your grip. She wanted to do my left first. It read 40lbs on the guage. She said that was a little below where I should be at for a woman my age. Then she had me grip with my right hand. She said my "dominant" hand should be at a 45lb level in comparrison to my left. The guage read 22lbs. Not good, but I was happy to see that someone else could see how I feel inside. My grip has seemed off to me for a long time. After a brief assessment, the tremor in my hand came out while she was making some notes. I probably sounded like a crazy person because I started saying, "Look! Look! You can see it! My tremor in my hand. You can see it!" She turned and said, "I'm sorry. I'm pushing you too hard." I said, "No, that's not it. It has never done it when a medical professional is around. Only my husband or daughter have really seen it." I know I'm crazy for feeling happy about this, but you start to feel like people think you are making symptoms up just for attention.

Another part of the assessment was I had to sit in a chair, stand & walk about 20 feet to a cone and walk around it, back to the chair to sit down. She timed me to see how fast I could do this. She insisted I use my cane cuz she was too nervous I would fall. I told her I don't need it all the time, but it's definitely good to have when I leave the house because I do fall less. So I used the cane to do her test. I made it in 17 seconds. She said a normal woman my age should be at 7-8 seconds. She said with MS, her goal is to get me to 10 seconds.

I had to write down my goals. I chose "walking better, improvement in going up & down stairs and my grip". I have only gone to 2 sessions so far so we shall see. I am hopeful. I have seen some improvement come & go, but it is early in therapy. I guess when you attempt to re-train your brain you need patience? Well this Brain Train is trying really hard to get her caboose back to the station!

Understand (A Poem by Tammy Malkowski)

If you don’t understand MS,
Could you just trust me?
If you don’t “get it”,
Can you just love me?

If you can’t see what I’m going through,
Can you just believe me?
If you can’t understand my pain,
Can you just comfort me?

If you can’t find a way to fix it,
Can you find an ear to lend?
If you don’t know why this happened,
Can you help my spirit mend?

I love you for trying,
Don’t ever forget.
The effort you’ve put forth,
Please don’t regret.

I have this disease
And I have confusion.
Just don’t ever think
MS is some illusion.

Can you love me anyway?
Can you be my friend?
You may never understand it,
But MS is a part of me in the end.

~By Tammy Malkowski, 7/26/10

Monday, July 5, 2010

My Mind is Racing

Whew! What a crazy 2 weeks! I started with my whole right side feeling numb, mostly my arm & leg. It was super hot & humid, so I wasn't feeling well anyway. The heat cause MS symptoms to flare up. It can make me feel nauseous, lightheaded and feverish. It increases fatigue and trouble focusing, as well as balance & weakness problems. When I say my arm & leg are numb, my best explanation for that is I can "feel" them, but it is like when your foot falls asleep before the pins & needles begin. When you walk on it, it feels weird and numb, but you could feel if someone pinched it or you were hurt. It is as if it's sensations are fading away.

So the numbness lasted a little over a week at that level and then began progressing. It spread to my left side and became worse...meaning the numbness seemed more pronounced. I was beginning to be scared. I didn't know if it would stop. Was something progressing permanently? Was I losing my legs? I didn't think so, but the fear & anxiety made me question alot. After the 3rd day of it getting worse I started to leave messages for my neuro. After the 3rd message, I got a call for me to come in. My neuro wasn't there so I say someone new. Her name is Dr Morrison and she was very nice. Beautiful too! Not that that matters, but it was notable.

She examined me. Looked over my history, commenting how thick my chart is. Talked over what had been happening the last few weeks. I also am having trouble getting a full breath. Wondering if this is the "MS Hug" I hear others talk about? She decided to order another MRI of my brain and spine for July 11th. She gave me a prescription for two new drugs, Gabapentin & Nortriptyline, for the tremors, numbness and nerve pain. She said they work together for MS patients and their symptoms. The tremor in my right hand has been worse and coming around more often. It was so bad one day I think I shocked my daughter a bit. She also ordered blood work to rule out infection as a precaution. She also gave me a prescription for physical therapy for my arm & leg. I have to call & set that up this week.

My anxiety is gone. I'm not allowing my mind to race over the worse case scenarios anymore. I just started the meds, so we shall see if they help. Symptoms are still present, but my smile has returned because we are looking and testing to see why this is happening instead of just ordering more steroids & hoping it'll go away on it's own. I believe she is checking to see if the MS is progressing or not.

I will keep you posted and remember when your mind is racing only you can make it stop by taking action. So hear that Brain? Your race is over!! Sit patiently and let's see how this plays out. Love to all!!

Tuesday, June 15, 2010

Clear My Mind

Well, the last month has been full of stressful events within my family. My daughter came home from school with head lice...TWICE! Awful! Awful! Awful! Oh and not to mention humiliating. I've heard it all. It's not my fault. It happens to lots of kids. Lice only like clean hair. It is really hard to get rid of. And they are like finding needles in haystacks. All true. Still sucked!

I spent days and countless hours, not really, I counted them. 19 hours the first time and 17 hours the second time. I did nothing but pick eggs out of her hair while her & my son watched movie after movie. We only stopped to eat meals and sleep. I don't recommend the experience to anyone. However, I feel I am an expert now. And while I wouldn't wish this on my worst enemy...there are a couple of people I secretly hope get to experience this next year. I say next year so that enough time has passed that they cannot blame it on us. Terrible, I know, but there are a couple judgemental people who may or may not have made me feel like a horrible parent. Maybe they can see that is not the case? Oh, well that is up to fate or Karma or whatever decides these things.

So during this time I was exhausted and extremely stressed out. I did manage to keep it together with a lot of patience, but broke down twice when I hit my breaking point. The reason I mention this is some of my family/friends feel that ANY stress will cause me to flare up or cause a relapse. It didn't. I had to find time to take care of myself and during the head searching I really couldn't. But I did whenever I could and I "crashed" afterwards, but I did not flare up or relapse.

There is no way I will be able to avoid all stress. It just isn't realistic. I am a wife, a mother, a working person, a human being. Stress is part of life. I do avoid it when I can. And if someone is causing me stress that I feel is unnecessary or ridiculous, I will simply avoid them. But there are things that are unavoidable.

I love my family & friends for wanting to protect me, but I am not fragile. Please know that I will take care of myself when I can and sometimes my body will decide that for me. The people who stress me out because of their own agenda I have pretty much eliminated from my life or I avoid them when I can. I don't have room for unnecessary drama in my life. I refuse to flare up over others selfishness.

As for my family and friends, tell me what I need to know, don't censor yourselves. You know I will find out eventually and then I will be hurt that you kept me in the dark. Treat me like the person you love and care about and I will do the same. If I can't handle it, I will tell you. The doctors do say to avoid stress, but shouldn't everyone try to do that the best way they can?

Also, last month I injured my shoulder while delivering papers. I throw samples on Sunday morning. I usually stack some bundles behind my driver's seat. While I was reaching behind me I pulled up at a weird angle and ...OUCH!!! Well, I didn't really think much of it and felt it would pass on it's own. But it began to become more bothersome. I was able to go away over Memorial Weekend with my mom and we had massages. I asked the masseur about my shoulder and she felt it wasn't "quite in the socket". She worked on it and it felt a little better. Then a week later, I was shampooing my hair and I felt something kinda "SNAP". And my shoulder blade and neck seized up. I couldn't turn my neck or lift my arm up all the way. Not good. I tried heat & ice to no avail. I finally saw my dr. He said I have severely strained the rotator cuff. He put me on anti-inflammatory pills and advised me to ice it and do some exercises. If it isn't better in a week, he wants to do an MRI to see if I actually tore the muscle. So this is day one of caring for the shoulder. Fingers crossed I hope that it heals. I don't need a new issue.

Summer vacation starts tomorrow and Dave & I will be adding a patio to the backyard so we can get our porch swing. This way I can be outside with my family this Summer. The heat is my second nemesis, the stairs is my first. Heat makes my symptoms worse. It makes me feel almost like I have the flu. Lightheaded, nauseous, weakness and fatigue. It sucks, so I prefer to find a way to avoid this. They have "cooling vests" for people with MS. I may look into that as well. This Summer, I will find a way to relax and clear my mind for my own sanity. Happy Summer to all!!!

Wednesday, May 19, 2010

Erase Your Mind

Update: Had a follow up neuro appointment this week. Dr Beall finally read my MRI from October. GOOD NEWS!! I have 3 LESS leisions!! That means the Avonex was helping. However, I am not on Avonex anymore. I am on Betaseron, so we need to do another MRI to see how that is working. The Betaseron is better on my body that is for sure. Almost all my side effects from it are gone. Some injection site reactions on & off and ocasional nausea.

Dr Beall says we can take the MRI anytime between now & the end of the year, it is up to me. I see him again in August, so I will decide then. No hurry. It is just for curiousity's sake.

I discussed the new swallowing issues & the hand tremor. He seemed more concerned with the hand tremor and advised me to watch it. If it continues or worsens, he wants to know. He said this would indicate advancing of the MS. He also invited me to a seminiar he was speaking at this past Monday. I was unable to get a babysitter due to unforseen circumstances, so unfortunately, I missed it.

He wanted to use me as an example of beginning stages of MS to compare with some of his more severe patients. Very flattering...and disappointing I couldn't attend. It was at Lucianos...MY FAVORITE!! **SIGH**

Overall, I am still doing pretty well. The hand tremor comes and goes. My right foot has been dragging when I over do it. And pretty much all my symptoms are like this lately. If I do too much, I show symptoms, but no flare-ups for now.

So, my injections are proving to be the mind erasers they are told to be. Well, at least fror the leisions. 3 Less is good. Hopefully, the new tremors aren't inndicative of new ones coming. But we will stick with the positive note until we can knbow for sure. Love & kisses to all!!

The Brain Farts Went A Walkin'

On May 2, 2010 We had our MS Walk in Troy MI. There were a total of 31 Members on our team and most of them made the trip to join us. That morning there were threats of storms and lightening. Because of this, the officials for the Walk Ms of Troy cancelled the walk. Instead held a "Dance Party" in the gym.

This was extremely disappointing to everyone. Especially since as of 9:00am that day, the local AM radio stations were saying that the storms had moved out of the area as well as the severe threats. This did not change the minds of the officials. So, we checked in, took some team photos (that I am still waiting for) and had some breakfast. At breakfast we decided to have our own walk.

The rain had moved out and the weather was turning out pretty good. So, after some more pictures we headed outside of Troy High School and were on our way. Since we did not have a marked route we were left to our wits. We walked about 2 miles total. It felt good to at least try and make the effort.

We have raised over $3,600 as a team!!! So exciting!! The efforts of my team and all the wonderful people who supported me are very touching. I am truly stunned at the outpouring of love & support. Thank you!!

Next year The Brain Farts hopr to make the walk officially, but no matter what, we will not give in!!

(On a side note: My mom, and my children, did drive to Frankenmuth, MI to join my friend Kelly in her Walk MS. We were the Wheelchair Hotties! It was a very beautiful day and a scenic route. The golf carts that came around to check on us and offer a ride, just in case, were very comforting. I really wanted to give in and accept the ride, bbut I toughed it out. We walked 3 whole miles! Woo Hoo!!)

Tuesday, April 20, 2010

Brain or Shine!!

Hello Friends & Family!!!
I am doing well!!! Yes, you read correctly. I am doing well!!! I have been feeling better than I have in months for about a week now. Soooo excited! I have accomplished so much this week. I cleaned out closets, I spring cleaned my living room, dining room, kitchen & 1/2 bath. I took Paul to the park...BY MYSELF!!! I took Kristina & Paul to the MALL & DINNER...BY MY--SELF!!!! I put away Winter clothes & got out Spring/Summer wear...I could go on, but why bore you?

These normal things, these everyday accomplishments for others are big milestones for me. Accomplishing general chores is not easy for me. Sometimes walking up the stairs can exhaust me. So needless to say, cleaning hasn't been the biggest priority. When I actually did get some energy for it, I typically only got to dust the living room. Basically cuz I couldn't stand staring at it anymore. I am definitely the type of person who has trouble letting go of control of things. So not being able to decide if my house would be clean or not was frustrating.

Being a mom, having a clean house all the time went out the window years ago. But this was worse. It went much, much longer. I knew people understood & most weren't judging me, but it was embarrassing to me. A simple task seemed like climbing a mountain. Impossible. I normally stick with the basics for my family. I make sure their clothes are clean, their bodies are washed, their beds are made and they have a good breakfast, lunch & dinner. If I could offer these basics, at least I would have given them healthy & clean lives. I help Kristina with her homework & read stories to them or watch a movie and lots of hugs!!!

Playing just isn't always an option for me. I tire out so easily and forget about it if the sun is hot. I am not looking forward to this Summer. Last Fall, the townhouse co-op, where I live, had to make the decision to cut down our beautiful, majestic, shady tree. I cried, no, I sobbed. Not only did this tree keep our home cool and a/c bill down, but it allowed me to be outside with my children if it wasn't muggy. I could sit under the tree and watch them ride bikes or run & play with their friends. Be there when they said, "Mommy, watch this!" But now... No tree. No shade. No way to sit outside. I cried for my tree, but I cried for my freedom too. I don't want to be a prisoner in my own home. That tree gave me an option. An option to be with my children. To try and be...normal.

I talked with Dave & we are going to look into buying one of those canopies that people put over their patio furniture. We don't have a patio poured so we need something that maintenance can work around when cutting the lawn. They said this would work because they can weed-whack around the poles/legs. So that will be the next purchase after the Spring. Hopefully that will give me some freedom.

When I took Paul to the park, I was so happy! When I got there and realized the trees didn't have all their leaves for shade, I panicked a bit. But I found a shady bench after I played with Paul. Then I could watch as he happily showed off for me. We walked down to the beach by the lake and Paul put his toes in the sand. I lasted 40 minutes. I was happy. Normally 5-10 mins and my legs are wobbly. As we started to walk back the loooooonngg way to the car, Paul looked up at me with his tiny hand in mine, and said. "Mommy? This is taking a long time." I said, "Yes, Paul. For me too. But we'll get there." We did. Home with Slurpees and big smiles. Oh, and a nap!!

I will take this reprieve from MS as long as it lasts. 7 days and counting... Brain or Shine, I will overcome MS. I will do what I can to live normally. And when I can't, I will take care of me. But Brain or Shine...I am still moving forward!

Monday, April 5, 2010

B-B-B-Brain F-F-Freeze

Been a busy month for me. After my visit with Kelly, she ended up in the hospital with her own bad, bad flare-up. I rushed up to Grand Blanc to visit her and the stress of that week and the worry pushed my beginings of the flare from the previous week into overdrive. I actually was pretty good at hiding it overall, but by Saturday, March 20th, it escalated pretty badly.

I had symptoms that had not been there before. I took my daughter to her First Communion meeting and while we were there my right hand began trembling. My body has the "inside tremors" quite often, but normally no one can see them. This time my hand was visibly shaking. My legs were very weak, and even though I had my cane,I was resting my hands on Kristina as well to keep balance. My brain was very "foggy" and I couldn't think clearly. I did my best to keep it together for her and finally it was time to head home.

I was supposed to pick up lunch on the way. I was feeling a little out of it still, so I handed Kristina the money because it didn't "look right" to me, even though I knew it was. I told her to hold it so I wouldn't make a mistake. From here I proceeded to drive home. I was almost there when Kristina says, "Um, Mom...what about lunch?" I said, "Oh, no!" And turned the car around. She said, while shaking her head back & forth, "MS again." So we started to drive to get the pizza. She said, "Mommy, your voice sounds funny." I said, "I just wan-wan-want to g-g-go h-h-HOME!" I couldn't talk. Stuttering and slurring. I was a little scared. I accessed the situation when we left the church and knew I was okay to drive, but I just wanted to get there. My instinct to protect my child was there, so I knew she wasn't in any danger. I definitely would have called my husband if I thought otherwise.

So we got the pizza and headed home...again. When we got there, Kristina immediately told Dave I was talking funny and that I almmost forgot to get lunch. I showed him my hand too. The weekend when Kelly had been here, I had a few instances where I had trouble swallowing food. This comes and goes for me without warning. Some people with MS experience this regularly, but so far it is sporadic. As we sat down for lunch, the swallowing problem re-appeared. I didn't eat very much because of it.

I spent the rest of the day trying to take it easy, but it didn't help my symptoms subside. Earlier in the week, I began having to crawl up the stairs to get to the top. When I went up to bed that night, as I was trying to get up to stand, I fell over in the hallway. I tried to laugh it off for the kids, and Dave didn't see me fall, so he thought I was just laying there after I crawled up. Needless to say, I knew a fall is never good. After that, I began going down the stairs on my butt. My legs were so weak I was afraid I would fall down, so this was a safer option.

The next morning for my paper route the cognitive issues were still there. I was talking on the phone to two of my "newspaper" friends and they noticed right away I was struggling to complete thoughts or get words out. When my Distract Manager showed up to help me with my route, I knew I sounded bad. I appreciated the help. I felt like an idoit when I spoke. I couldn't think of words or complete sentences or thoughts. It was scary to know that you are an intelligent person and your communication goes out the window.

I continue to go up and down the stairs this way. I have had a couple random moments where I can walk normal on the stairway, but they haven't lasted. I feel like I am getting to the end of this flare-up. The cognitive/brain issues have subsided. No more consistant stuttering/slurring and brain is clearer. But the physical symptoms keep coming and going. I start to improve, but then the fatigue, pain & weakness return. I keep hoping it'll pass on it's own. Scary enough to worry me at first, but not so bad that I want to do steroids again. I see the neuro in May, so I will mention this episode then.

I also, have to mention this itching I get on my bottom eyelid of my right eye the day after my shot. It never goes beyond that, but I'm gonna mention it in case that's a problem. Hope not, cuz I'll be out of shot options then.

I went to visit Kelly and her kids again last week and she gave me 2 of her old canes so I can have one for the car and one for upstairs & downstairs. Both are pretty and fasionable! I am a stylin cane walking girl! Even if I have a B-B-B-Brain F-F-Freeze every now and then!

Sunday, March 14, 2010

Two MS Peas in a Pod!

Sorry it's been so long since I posted last. Overall, since my flare~up in the beginning of February, I have been..better. The steroids definitely helped! I have some MS symptoms on & off, but to me that is "MS normal".

I have been making lots of friends on the MS Facebook page. That has been such a Godsend! It is my own little support group 24/7. I can ask questions, I can give support or receive it, and most of all I can laugh with people who truly understand what I am going thru. I'd like to say completely without judgement, but there are always those kind of people no matter where you go. Overall, the friends I have made are some of the most AMAZING group of people I have ever met! I truly have found some lifelong friends and it makes such a difference. In general, I'm a pretty positive person. I certainly am not going to let a little thing like MS change who I am in my heart, but this site has even made ME cheerier!

Most of you who know me, know that I am blunt, honest, positive person and a HUGE flirt! I will be a wonderful friend if you'll have me. I will pick you up when you are down. I will tell you exactly how it is and tell you how to make it better, whether you like it or not. I love with my whole heart and if you hurt someone I love...you better watch out! I have compassion for most people & situations and will find the brightside of anything. I love to play devil's advocate to help myself and others see the both sides. And I have a good sense of humor. I will declare how funny I am at least once a day. I will face any challenge head on and will not give up. This is who I am, take it or leave it.

I have made many friends in my lifetime and because of the "mom" to everyone I am, I attract many friends who take more than they give. But I love them anyway because it is who they are and I know they love me too. But recently I met my new friend, Kelly. She is NOT this kind of person. We are the same. We have the same sense of humor, the same outlook on life, the same heart and we are the same kind of friend. She is beautiful, funny, caring, more positive than you can imagine. With every challenge that tries to knock her down, she pops up faster than a Weeble! She and I have become "fast friends"! I never knew what that expression meant until I met her and we connected. With every passing day, every conversation, every supportive word we became closer. I joke that I fell in love with her, but it isn't a joke. I do love her with my whole heart. She is the kind of friend to me that I have always been to others. It is the perfect give & take friendship. Her having MS like I do, although different types, helps us connect that much further. I am so blessed to have met her.

She came to visit over the weekend and it is like we have always been friends. We talked for hours and still need more time. She is like visiting Vegas or Walt Disney World, you have to keep coming back to experience everything. There is just too much to cover. I was feeling pretty poorly this weekend, but I didn't care because my friend, Kelly, was here and I wasn't gonna allow MS to steal my joy! Thank you Kelly for being my friend. For blessing my life! For being you!

MS brought Kelly to me because without it, we never would have met. If this is one of the prices to pay for a friend like this, I guess having MS isn't so bad. I said before that I believe everything happens for a reason. That I needed to be patient to find my reason. I believe that MS lead me to this site to be a friend and support to others struggling with MS. I happy to be that support for others. I am a born "mom"! Who knew that my reward for being a friend and a "mom" would be this beautiful woman to become my friend. Thank you, God! I am happy and even though I have MS, and even in this very moment, I feel terrible...no one can tell from the smile on my face! We are two MS peas in a pod...Look out World!

Thursday, February 18, 2010

Brain Awakening

Oh, Happy Day! I am feeling better today! I started a new medicine this morning called Provigil. It is an anti-fatigue medicine, typically prescribed for people with Narcolepsy. While I'm sure this condition isn't funny to those who suffer from it, I was a little amused. We all have our weak moments, right? So I digress. I was prescribed this back in January, but didn't fill it until right before my flare-up. So I didn't end up taking it. I felt I needed my rest to recover and that it would be counter-productive to energize myself when I needed to heal. So I waited.

I have felt better this week overall. I told Dave my biggest complaint at this point was feeling tired. So it seemed a good time to try the new meds. My neuro said to take a half of a pill at breakfast & a half a pill at lunch. If this didn't help then a whole at breakfast, and half at lunch, up to one whole one at each meal. I don't think it'll be necessary to increase.

So I wanted to start with a little caution since I didn't know how I would respond. I have seen many posts of how different MS patients have responded from energized to hyper to overwhelmed. So I decided to just do the half pill at breakfast. After an hour, my fatigue seemed to disappear and I felt pretty good. After around 3 hrs I thought I was a little hyper, heart racing slightly and had to catch my breath. I decided to skip the lunchtime pill. At about 1:30pm, I started crashing, fast. Fatigue was coming and weakness was spreading. I wanted to rest, but didn't really have the time.

Around 2:30, I re-evaluated myself. I calculated how long the effects had benefited me and came up with about 5 hours. So, I decided to take the other half. My thought is in 5 hrs it'll be time to put the kids to bed and wind down. So I gave it a try. It was better! I felt more energized again, but no hyper or heart racing, etc. So it occurs to me I was drinking my usual coffee in the morning. I know! Maybe, less caffeine with the Provigil, right? I mean I still want my coffee, but I could cut back until I find the best amount to limit the added effects. Hey trial & error was what I was going for today.

It is about 8:30 now, and I feel the effects wearing off. Getting tired, which is perfect since I should go to bed soon. But the best part is, I felt almost normal this afternoon. I mean normal like I haven't felt in two years! Don't get me wrong, there were some symptoms. Some leg weakness & pain, but I figured I didn't take my pain pill today. I need to manage both things better, but it's a start.

I also need to remind myself with Provigil that MS did not take a vacation that this is designed to wake me up a bit to function in my daily life. I got a little excited with the burst of energy & walked a little too fast. I caught myself falling in the parking lot. I caught myself! I'm fine, but I need to remember my limits and reap the benefits. My leg is still off, but I think this will be a good thing. I am hopeful and who could ask for more? So I have been using this tagline on & off, so I will end with it. Hoping for miracles & positive attitudes!

Thanks for all your love & support! It means the world to me!
Tammy

Thursday, February 4, 2010

Brain Boost

So yesterday was my last day of IV Steroids. I had a burst of energy in the afternoon and definitely felt alot better. Pain was gone, numbness was gone, fatigue was gone, weakness was gone! I was alittle off-balance, but things were looking up. At around 7pm, I hit my wall! Fatigue started setting in, so I made sure I was ready to get right in bed after my shot. I slept pretty good.

This morning, I still felt better. Normal MS mode, I would say. Can't expect miracles, right? But I started to get really fatigued around 8am and my right leg started to go numb again. I told Dave I needed to go lay down. So from 9:15am until 2:30pm, I slept! When I woke up, I felt a little shaky and my legs felt weak. Now the pain is there again. *sigh*

I just thought the effects would last a little longer than this. I still feel better than I did, don't get me wrong, but I don't feel good. I start the Provigil, anti-fatigue meds, on Saturday. Hopefully that can bring some new benefits to my body.

Trying to stay positive through my frustration. I am happy I do not feel anywhere close to what I was experiencing last week. But I just want to keep the Brain Boost a little longer! Love & kisses! -Tammy

Wednesday, February 3, 2010

Strong Minded

Started Steroid IV Infusions on Monday. My flare-up that started last week with the overwhelming numbness escalated over the weekend. The pain became so bad I was in tears much of Saturday & Sunday afternoon. The "inside" tremors were bad too. This is basically when you feel like your whole body is shaking or vibrating from the inside out, but can't be seen to the naked eye. It's really unnerving. Add that to the whole body feeling numb, and well, I was a mess.

After I finished my paper route on Sunday morning, I had a bad scare. During the route I was ok, not great, but functional enough to do my job. After each part of the morning I was more tired, but no other symptoms but the numbness. So I finished my sample papers and started home. Dave had mentioned he wanted to go get milk after I got home, but I thought I'd just pick it up. So I am driving down Gratiot before 13 Mile Rd and all of a sudden I feel like I'm not breathing. I think WTF, I'm not breathing, so I start taking very deep breaths. Then I start to feel like I could pass out. Keep in mind, I'm still driving. It was like that feeling you get when you stand up to fast and that snowy feeling comes over your eyes like when your tv cuts out. I start looking around to see where I can pull over. The closest thing is Kroger. I figure it's early Sunday morning still, not alot of traffic, so people should have time to move away from me if I crash. And I'm not going over 35 mph so the worse that can happen is I hit the median. So I think if I start to pass out, I'll just throw it in park & hope for the best.

So I make it to Kroger still feeling weak and light-headed. I think I need to go in the store. If I'm gonna collapse, I need to be around people. No one is gonna find me in my car. Now I don't take my cane with me on my route so I'm free walking. Not very steady. As I'm walking I think people must be staring, right? but I remember that "I look so good" so probably not. If anything people are annoyed that I am not moving fast enough for them. Of course the milk is at the back of the store. I realize it's not so important to get the milk, but I was stalling to see if I was gonna be all right so mine-as-well accomplish something. I am trying not to cry and get my bearings. I think maybe I have low blood sugar, but there is no candy in the aisle I'm in & I don't want to go to another aisle, so I just pay for my stuff and slowly make it to the car.

I remember I have graham crackers in my purse for Paul, so I eat them. They don't help, but I tried. I decide I need to go home. So I take the most direct route, 13 Mile to Harper. I get home and want to cry, but keep it together. I walk in the house & Dave says, "Hi, hon! how you feeling? ... ...What's wrong?" I immediately burst into tears. Paul says "What's wrong Mommy?" I can't answer. Kristina says, "Did somebody die?" I shake my head. I can't stop crying. I finally tell Dave what happened and how scared I was.

I remember I'm supposed to watch my nephew the next day, he's only 5 months. I don't think it's a good idea. So I text my mom & ask her to cover for me. Then text my sister about the change in plans. I make arrangements for my sub to cover my route the next day. And try and eat something. I start crying again because the pain, numbness, inside tremors and fatigue is becoming more extreme. Kristina notices & goes to find Dave. He says he wants to take me to the hospital. I tell them the ER can't help me. He wants to know why not. I explain they are there to keep me alive and I'm not dying. I just have a bad MS flare-up. I decide to call my neurologists after hours line and get their opinion.

My neuro is not on call, but the head of neuro is. he asks if I have a fever, I say no. he said that would be the only reason he would send me cuz of possible liver or kidney infection form the meds. He advises me he will start me on IV steroids in the morning.

I take a pain pill and go to sleep for 4 hrs. The next day, I go in to start the steroids. My neuro is on vacation so I see another one in the practice. He is very nice and very compassionate, Dr Kahnst, I think. He says he wants 5 days of steroids, but asks if I've done that before. I say I only have had 3 days in the past, but that Dr. Beall has mentioned bumping me up to 5 days if necessary. So he states we will do 3 days and add the other two if necessary. Today will be day 3 for me, so we will see. I don't know what exactly he will be looking for as far as improvement to add the other two days. Not sure if he will be at this office today or not, he wasn't there yesterday.

So far the pain is alot less and the numbness is gone. I am still extremely tired, and very weak. The steroids do not give me energy like most people, they wipe me out. They cause my heart to race, and when I lay down it sounds so loud and feels like it'll jump out of my chest. They also make me weepy and bitchy. i remembered the mood thing before, so I made a conscious note to myself that if someone pisses me off I should give them a pass since I'll probably be overreacting. So I am trying to bite me tongue. Overall so far so good. Except for the incompetent person at the Social Security office that I hung up on, it's been fine ;)

So there it is. Hopefully on the mend. Maybe the steroids will make my mind stronger...like Arnold! The Dr's are doing "something" so I'll take it. Be well, stay positive and love life! I'm doing my best!

PS I signed up for the MS Walk in Troy, MI on Sunday May 2, 2010. I actually enrolled in the middle of all this drama. I figure I will walk in any capacity I am capable of that day. I'm asking people to support me financially or walk with me that day. I named my team "The Brain Farts". Always keeping my sense of humor! If you are interested in joining my team add this link in your browser & check me out:

http://main.nationalmssociety.org/site/TRC/Walk/MIGWalkEvents?pg=peditor&fr_id=13951&px=7658887

Thanks again for all your love & support! -Tammy

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
1/30/2010

"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!!

-Tammy

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 www.youtube.com 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!!

http://www.nationalmssociety.org/online-community/film-festival/show-must-go-on-/index.aspx

or

http://www.youtube.com/watch?v=6oraM8IF2Gc

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 Mind...to fall with style!

-Tammy