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Tuesday, December 6, 2011

Holiday MeSs...MS Style

It's the holidays and among the many blessings they bring there are as many headaches and obstacles even the healthiest people encounter. Last year I pushed myself so hard that I didn't take the time to take care of myself and ended up in a terrible flare in January & February. It took several months to recover. This year I am planning ahead.

We all know that the days we plan for usually work out better than if we didn't. I know that planning doesn't mean it works out the way we expected. I am not talking about the plans of going to an event and hoping you feel good that day. I am talking about the kind of planning that helps you pace yourself in order to accomplish what you want while taking care of yourself. This year to accomplish my goals, wants & needs I am using the calendar to be proactive and I thought I would share. Now I realize it is December 6th and we are week in to December, but take my advice and find a way to make it fit for you. Not everyone is trying to be "Super Christmas Mom" like I do, but everyone wants to make Christmas or Hanukkah or Kwanza or whatever you choose to celebrate special, to themselves and the way remember it "should be".

First, write down all of the things you want to do over the holidays. Separate your "Christmas To Do List" by Wants & Needs, but leave room for a second category we will use later. I will use myself as an example to give you ideas.

Make Christmas Cookies
Make Christmas Candy
Decorate the house
Put up Christmas Tree
Go to Christmas parties
Kids school events
Visit with Santa
Take picture for Christmas Card

Send Christmas Cards (Need because I just moved & need to update address. Perfect excuse)
Shop for gifts
Wrap gifts
Rest & Take care of myself

That's a good start. Now, I need to break these choices down further.

Wants Extended:

Make Christmas Cookies:
*Cherry Blinks
*Sugar Cookies
*Peanut Butter
*Gingerbread Men

Make Christmas Candy:
*Chocolate Suckers
*Peanut Butter Cups
*Chocolate Covered Cherries
*Chocolate Krispie Crunch
*Candied Orange Peels
*Peppermint Bark

Decorate the house:
*Inside Lights & Knick Knacks
*Outside Lights & wreaths

Put Up Christmas Tree:
*Tree Skirt

Christmas Parties:
*Birthdays (during December)
*Santa Lunch w/neighbors

Kids School Events:
*Christmas Choir Concert
*Christmas Social
*Volunteer for Kid's Santa Shop
*Bake Sales

Visit Santa:
*At the Mall
*At the Greenhouse Hot Cocoa Social
*Santa Lunch

Picture for Christmas Card:
*Decide on a setting
*Get setting ready
*Pick out clothes for kids to wear
*Help kids get ready
*Have kids sit for the picture
*Take picture
*Send picture to put on the Christmas Card
*Pick up Christmas Cards

Needs Extended:

Send Christmas Cards:
*Make List
*Review Addresses
*sign Cards (if needed)
*Address Cards
*Put on stamps (Go pick up if still need them)
*Mail Christmas Cards at the post office

Shop for gifts:
*Put names on Christmas List
*Write down ideas next to each name
*Look at newspaper ads and online for deals
*Go shopping at mall and specialty stores
*Keep track of purchases
*Stay on budget

Wrap Gifts:
*Sort presents by person
*Choose paper for each gifts or person
*Gather supplies-scissors, tape, gift tags, pen...)
*Wrap and label gifts
*Sort under tree by family, event, from Santa or Mom & Dad, etc
*Mail out of town gifts

Rest & Take care of myself:
*Put feet up
*Take naps
*Rest mind and relax
*Do MS Yoga
*Practice strategies for balance & strength taught by physical therapist

From here is where the blank category comes into play. From first glance the original lists may not seem too bad, but once they are extended they really show how crazy we can be stretched without realizing it. The blank category is where we put the things we take out of the extended categories. For example, the cookies and candy have 5-6 different kinds. This year I am going to scale down and eliminate 2 from each category to make it smaller. So use this category for priorities. This will be where you put the things that will still make you feel like you accomplished most of your goals to participate in the way you wanted to do it. Keep this in mind as we move on to the calendar.

Bring down your calendar or print a blank month of December online & grab a pen. The goal here is to get your priorities down and spaced out enough to allow you to rest and still accomplish your goals. Look at the first week of December, this is your planning week or choose 2-3 days for planning out your ideas and tasks. Look at your priority list and find out how the parties fall, when you want your cookies made by and when you want Christmas cards to be mailed, etc.

Plan, Plan, Plan. This can mean the difference in how your holiday is memorable for good or for bad choices. Here is my example calendar:

December 1st-7th:
*Research websites offering "Free Shipping" or shop online & pick up at the store. Many sites offer this now. Walmart for example has a "site to store" pick up. You order online & they ship it to your local store at no charge. You just bring your receipt and they bring items to your car if you need help.

*Buy your Christmas cards if doing boxed ones with no picture and keep near your favorite resting chair.

*If doing a Christmas photo, decide & plan layout, clothing, etc

*Write in Christmas parties on calendar once you've decided which you will attend. If you want to have a "maybe group" of events you will play by ear or by your MS body then put them on in a different color to indicate they are a "maybe". Example: Use Red for definitely & Green for hopefully.

*Send regrets for the "No" events

*Decide which Christmas goodies you will make and print out or pull out the recipes to set aside.

*Review recipes and see which take longer steps such as "refrigerate dough overnight" and plan out accordingly.

*Plan shopping trips, but space out. Know your advantages, for example: The USPS will deliver stamps to your door with the postman. He/She can also pick up the packages you want to ship. This reserves a good part of your energy.

*When scheduling yourself, add days for just resting. At least one between events. If you can't have a day, schedule in nap or to out up your feet for an hour or two. This can really make a difference.

December 8-15th:
*Find ways to cut corners on the tasks you have chosen. I decided to change my sugar cookies to the pre-cut or pre-shaped kind. Some stores offer this. I bought mine through Market Day that is sold through my child's school. I am also giving my kids free range to decorate these themselves. If you make the dough one day and bake the next do that.

*Another way to save time & energy is separate or set up your tools the day before. For example: Get out the bowls, the dry, non-refrigerated ingredients, the spoons, cookie sheets all that you will need and put them on the counter or the kitchen table for the next day. When the next day comes you will need to preheat the oven, get out the cold ingredients & begin baking.

*Ask for help. Don't be proud. Our families & friends want to visit with us. Many want to help, but aren't sure how. Either they don't want to overstep or do the wrong thing or they don't know what little things will make the difference for you.

*Ask someone to bring the decorations up or down from the basement or attic. That will save you energy.
*Ask if someone can bring the empty boxes back for you when you finish and establish where to leave them and when they will do it.
*Ask someone to do the dishes after you bake the cookies or make the candy.

*Once your cards are ready to be addressed, leave them near your favorite chair or spot. Have a goal of addressing 5-10 a day. Leave them for the postman to take to the post office.

*Shop online & arrange free shipping or site to store.
*Other options are having the store or site ship it directly to the person's home.
*Ask friends & family for money saving tips they have discovered.

December 15-22nd:
*Sort Gifts as you buy them
*Set up a wrapping "station" or area with your supplies
*Ask for help with wrapping
*Set a number goal of how many gifts you want to wrap a day
*Finish up baking
*Put together any goodie plates or tins you need
*Write out labels for gifts or tins in advance

*Take a nap before an event
*At least take time to rest or put your feet up before your party
*Schedule "Your Time" wisely
*Have an exit strategy for when you need to leave a party, whether this is a must leave by time or a "Code word" that tells your driving companion, I need to leave now.

December 23-December 31st:
*Finalize your plans & details
*Keep up the 5 cards a day or 3 gifts to wrap a day
*Plan ahead for ALL your events & special moments
*Rest! Rest!! Rest!!!!
*Remember: Only YOU will put your health first. Others are happy to SEE you & interact with you. Our own adrenaline at these events makes us push further & masks the oncoming symptoms so know your body & plan accordingly.
*Pace yourself by scheduling your time wisely.
*If you want to attend more than one the same day or in the same weekend then pick a time frame & stick to it. It you believe 2 hours at each will allow you the energy and rest time to do both then follow your own plan. You will be happier in the long run.
*i find when I get in my car or arrive home after an event, the energy drains out of me. I didn't even realize that my excitement was pushing me further then I would normally tolerate. We know ourselves, so that is why planning is best.

Make plans that will fit your lifestyle and at your pace. My timeline is an example and a rough one at that. Make things happen the best way to keep you healthy AND happy. Make your holiday Merry & Bright and not a Holiday MeSs. Merry Christmas! Happy Hanukkah! Happy Kwanza! and Merry Everything in between!! (Happy Birthday to my fellow December/January Birthday Friends too! ) <3 Love & Kisses <3 ~Tammy

Tuesday, November 22, 2011

Brain Scan

Today, I am scan my brain for the topic I wanted to write about, but am coming up short. The brain farts return! that is why I chose the name Brain Farts for my Ms Walk Team. It was for so many reasons.

#1) I want people to laugh, and it is hard not to laugh when you hear that phrase. People find it unexpected. that is good because it helps to lower their inhibitions and they feel less anxious or awkward as they hear about MS. This way they can relax and let their questions flow or at least hear what I have to say about MS.

#2) People can relate to a brain fart. I lead with that when I explain the name. Everyone has had a brain fart. It's that moment where you know what you were going to say or do and you completely lose it. You feel off balance, you feel a little silly or even dumb, you think "I just was thinking of doing this. How could I forget so easily?" the difference between the everyday person is their brain farts are occasional. With MS, we can experience brain farts weekly, daily, even hourly.

#3) I want people to remember me and MS. The Brain Fart Team name is unforgettable and if people remember the name, maybe they will remember what they learned and also the feelings behind the message.

I try to be very approachable about anything in my life and I maintain that with MS. Ask me anything, and I mean anything. Be prepared, that what you ask will be answered. I am blunt, I am honest, I am patient, I am funny and I am candid. I believe in asking questions. One of my favorite quotes is "The only stupid question is the one you didn't ask.

People tend to keep things inside rather than express themselves. Most out of fear of rejection or humility. Most people are not mind readers and most people are not trying to hurt others. People do things without thinking and often have no idea how they have hurt someone or how their actions are perceived. I will hear a friend talk of how someone didn't call or they don't hear from them anymore so they intend to cut their ties with them. My first question is always "Did you try calling them?" or "Have you told them how you feel?" 9 times out of 10 the answer is "No."

If a relationship is that important to you that you are that hurt, it is worth the time to ask the question. Even if the result is the same and ties are cut, you will know you tried to be honest and you will have no unanswered questions. I had a friend once say that during a flare her best friend and her mother hadn't called her or checked up on her and she was so upset. She felt abandoned and alone. She was really hurt. I asked if she talked to either of them about how she felt. No, she didn't. Why should she be the one to call? My answer was "I think a best friend and definitely a mother are worth the effort."

I once asked my mom why she hadn't called. She told me she's afraid that when she calls it will be the one time I finally fell asleep. Or I will feel obligated to talk out of being polite rather than speak up and take care of myself. I told her and anyone else in my life, don't hesitate to call or text me. If I am busy or don't feel up to it, I won't answer or respond.

In general, people aren't trying to be hurtful or even neglectful. We have to remember that the people we love also have their own lives and problems. it doesn't mean they care less about us. Other reasons people will pull back is they don't want to burden you with their own problems. They are afraid for you and don't know what to say. Or others just can't handle knowing someone with MS or another major disease or ailment. Fear is a powerful thing.

Speak up. Tell others how they are making you feel. Tell them why you are hurt and what you need from them. Educate them about MS. Not everyone knows what it is, how it effects people and what they can do. Before I even was diagnosed, I knew very little about MS. I knew Annette Funicelo & Richard Pryor had it. Those are extreme cases, maybe progressive. I have never stopped to research exactly. Then their is Montel Williams who has stepped up to educate the nation about MS and pain management. The problem with these celebrity examples is they paint pictures that don't show the whole story. Annette was not born in that wheelchair. Look at her movies and how vibrant and alive she looked and was in her youth. She aged with her body and MS aged with her as well. We don't know her journey by sight alone. An Montel, if you just look at him, he looks healthy and fit. He seems like he is ok and "normal" even. but as my poem said "Seeing is not always believing" .

Teach your family and friends. Ignorance is not stupidity or even a lack of caring. It means they have no knowledge or true understanding of the topic. We are the catalyst in many people's lives. It does not mean we have to become a full on advocate, unless you want to, but we should offer the basic info and patience for our loved ones. After time, you may realize some of them will never get it and some do need to be cut off. Please. Do yourself the favor of asking the questions YOU want to know before you walk away. You may be surprised to learn that your feelings were not the result they intended.

Be brave. Be honest. Be informative. Be patient. Be loving. Be good to you and your body. Do a Brain Scan and find what you need for your body, your heart, your soul and your mind. You will be glad you did.

Love & Kisses, Tammy

Monday, November 14, 2011

Claudia's Comment (My Reply)

Claudia, You should contact your neuro ASAP. What you said in "MS Pit Stop" it is not normal for numbness to spread that quickly. I understand your hesitation due to too many prescriptions, but ultimately you make that choice. Most likely you would get IV Steroids to help stop the MS Flare you are probably in right now. Keep an open communication with your neuro. It is very important that you both discuss what meds are needed and which are optional. Which treatments are necessary and which need to be discusses. you are allowed to be scared or nervous, but not allowed to ignore things & hope they go away. Please take care of yourself! ~Tammy

Amnesia Wishes

Hello Everyone, Recently my husband & I had been having trouble communicating. During the remodeling of our home, I was pushing myself too hard. Shocking I know. I would, however, ask for help with some things from my husband or my children. This wasn't always met with the greatest enthusiasm. It was to the point where I didn't even want to ask because it was easier to just do it myself rather than deal with the sighs or complaints. When I didn't ask, I'd hear, "Why didn't you ask for help". When I did ask, I'd hear, " Why can't you do it?" or " Really? Right now?" or the resentment would be evident. Eventually, little fights would start or passive aggressive behavior.

I would sit down with my kids, but they are kids. They don't walk all over me normally, but with all I was doing, my normal disciple tactics went out the window. I would remind the kids that one day I would be finished & I will remember this. ;) My husband & I had 4 separate conversations about how I felt overwhelmed and abandoned by him during the Summer. I knew he was overwhelmed & creating even more stressors in his mind. I was losing sleep and working on this house round the clock. Each time I spoke with him he told me I was right & he would try more. It was fine for a while, but the pattern would repeat.

Recently, it began again & we had a bigger fight. When we finally sat down to talk, we had a break-thru. I came to this Epiphany. My family is fine with me doing everything as long as they don't have to see me and my body suffer because of it. When they see me and what MS does to me, they feel badly, especially when they could have helped to prevent it.

To be fair, I helped bring my family to this point. I am stubborn & I am sure I can do most things better. I have created my own little monsters. I told them as much as I need their help physically, I also need their patience. I need to learn to pace myself on things I want to do myself and to delegate other tasks to them. I need to teach myself to let go & they need to help me do it.

It is often easy to only look at one side of a story. Especially when that side is your own. Sometimes we need to step back and see the whole picture and how we all fit into it. It was very easy for me to see how "no one was helping me", but much more difficult to see how I helped them all to do it so easily. I need to take responsibility for my role too.

I have started to ask for more help, to delegate and slow down. I also, am calling out my family when they try to stay in old patterns. For example, after straightening up the house, my husband brought in the mail and put it right where I just threw away a bunch of flyers and junk. I said "Why would you do that?" He said, "What? I don't know what you want me to do with the bills." (I pay all the bills.) I said, "C'mon! There are not even any bills in here. This is what I am talking about. This is how you put more on me." My family can generalize so that I have more to do and they can explain away their guilt.

We are making more progress, but it is a process that requires baby steps on all of our parts. Especially on my part. I need to speak up more and stand up for myself. They need to speak up when I am becoming the martyr and not being fair to them. In the end, taking about it and letting them know how I felt and hearing how they felt was the best solution. Sometimes we need to gain some perspective in order to make differences and see how to improve our relationships. Even though my family & I wish for MS Amnesia, sadly that is wishful thinking right now. However, harmony within my household isn't.

Wednesday, October 26, 2011

MS Pit Stop

Hello Everyone. Well, going to pick up my car the other day was the beginning of my disaster. When I logged off of FB, I realized I was not feeling well at all. But I needed my car for samples & it was Friday. So I raced to the dealership traded in the rental for my car & raced back to get my kids at school. The whole time knowing I NEEDED to call my neuro. My arms & legs were going numb, my feet were already numb. I was getting shakier, I felt exhausted and my face "felt weird". I was having trouble swallowing too. Kristina had a bday party that I needed to get a gift for, the car was on fumes, needed gas, and I had to go to the grocery store to get laundry detergent cuz Kristina was out of pants & I'm sure the rest of us needed things too. All this knowing it's 3pm and the neuro will leave at 5pm for the weekend. I call & leave the message for the nurse that I am on Bactrim for a UTI and had 2 days IV Solumedrol(steroids) and I feel worse than when I came in for the MS flare. And I wait. I saw a couple of adults while waiting & kept interaction to the minimum. Although I think they could tell I was acting weird. I called back neuro at 4:45pm & bypassed the regular voicemail & talked to a secretary. She eventually got me to the nurse from infusions, Tish, and she asked a few questions, put me on hold & said to go to the ER. Not surprised, but feel guilty at all the people about to be affected by this decision. My sister, Rachelle Caramagno Riesenberger (Shelly), rallys the troops (finds someone to take me to the ER (I wanted to drive myself. I did just drive for the car trade-off. Probably a bad idea in hindsight). My sister, Patricia Caramagno Polk, was on her way with her toddler & my mom, Linda Mannino, was going to meet me there. This changed & mom came to get me instead. Shelly goes & buys birthday gift for Kristina's party & picks her up & drops her off. She meets Patti at dinner with my son, Paul, and takes him to Toys R Us to entertain him til birthday party is over. Brings my kids home & puts them to bed. She waits until my husband, David Malkowski, can come home after 11pm. All the while keeping people posted & wondering if she needs to cancel her photo shoot the next day. (She didn't have to , I think). My mom picked me up at 6pm and we got to the ER by 6:20pm. Promptly thru triage and told they were going to "open a bed" for me rather than keeping me in the triage area for cots. So they put me in the hall where we wait for an hour. Patient after patient leaving and me sinking deeper in the wheelchair they provided. My mom freaking out cuz I look like I will pass out any moment and bordering on going "Terms of Endearment" on the staff. She questions several times the wait. Finally another check-in nurse notices us and points out we have been here too long and he finds out what is going on. We are in the bed by 8pm. A wonderful nurse is assigned to me . She has a pretty name, Ayumi. It means "going my way" in Japanese. I ask questions, are you surprised? She speculates allergic reaction to Bactrim (for UTI) or worsening MS flare, but says she is only guessing. When dr comes she suspects he will order urine & blood work. She checks on me to make me comfortable. Finally we see the dr at 10 pm. At this point My arms & legs are even more numb, like pins & needles. I feel pressure, but sensation is low. My face feels "weird" and numb and upon further examination has become so red I could compete against "Snow Whites Apple" for richness in color. He orders the urine/blood work. He believes I am having a reaction to the Bactrim & wants to talk to neuro on call from my practice to decide how to proceed beyond that. First they do a double bag/tandem of saline to help flush out meds (two separate times) and add Benedryl, "just in case" it is a reaction. After talking to the neuro, they are told to admit me and do another dose of IV Solumedrol (steroids) and neuro will come in the morning to decide what to do next. In the middle of all this, Dave has left work to come sit with me and sent my mom home. When they decide to admit me I send Dave home to the kids & to send Shelly home too. I get into a room at midnight. Eat some crappy, baby style applesauce, but I know my meds are coming & I haven't eaten. My roommate is loud. Not loud like I can hear her, but she never stops talking or moaning or being demanding. I ask the tech who brought me down to take me back to the ER cuz it'll be quieter. He laughs. I tell him he knows I'm right. He says "You are 100% right." He brings me in the room anyway. She can't get the volume on her tv to work so tells me she'll put hers on the same channel & to turn up my volume so she can hear it too. I tell her I am going to sleep. Sorry. In the morning, she also tells me to call back foodservice to get her more butter. I tell her they need to verify her identity so she can call them. I had to go against all that I am with this woman. I am a natural helper & I ignored her alot. I pretended to be asleep, deaf, rude, I don't know. They told her she would be getting a Valium for her MRI and it would make her drowsy, as well as another med would that she already took. She said she was fine with both. I silently cheered on that decision. She slept for 4 hrs. She snored, but ironically that was quieter and more comforting. I told everyone to stay home. I didn't need visitors. I needed rest and to wait for neuro. When neuro came he ordered a 4th dose of IV Solumedrol(steroids). He said he would keep me another night, but was more concerned that I would be exposed to more infections by staying there. (Steroids lower your immune system). He would rather monitor me for an hour after and send me home to rest til they could see me Monday. They discharge me at 6:30pm. As of now, I am tired and resting. My face has a slight flush, but better. This was my first official hospital stay for MS. I have been in the hospital for hours, but never admitted. Woo Hoo. What a milestone. I could stand less drama. Be well, my friends.

Friday, October 21, 2011

Brain Free

I wanted to update you all on how my physical therapy (PT) went this Summer. I started the end of April finished on July 19th. It was amazing how wonderful I felt when I was done. Yes, I said wonderful. I hadn't felt that good in years. The people at Theramatrix in Eastpointe MI were incredible. My head physical therapist was Rachele, and she did more than just get me "good enough" to send home, she made me better. Every time I improved on an exercise or task she would find a new way to make it more challenging or she would replace it with a new one. I not only improved my balance, but I was getting stronger. I also went to PT because of severe tension headaches. My "Pain Management Specialist" doctor had to give me steroid injections into my neck to loosen all the tension that was there. Then he ordered Myofascial Release which I discuss in my post on April 14, 2011. That really helped. I never knew I could get rid of the tension in my neck. It has always been there, even after a massage. It helped so much. At the end of my PT, Rachele added in exercises that coordinate a Bosu Ball into it. If you aren't familiar, this is an exercise ball seemingly cut in half with a hard surface on the bottom. I can push my foot into/onto it for lunges, I can flip it over and use it as a balance board, I can do all sorts of exercises to improve my balance, strength, and coordination. I also began using MS Yoga in March and that has done so much for me. When I use it, my muscles feel less tight and tension leaves my body. I feel more energized and feel like I can better manage my MS. Both programs, PT/Bosu Ball & My MS Yoga, help me gain a sense of control over my body and feel like I can better manage my symptoms. Possibly even lessen the flare time or number of occurrences. This would all be really helpful to me now if I hadn't let my body down by not making my health a priority. I was so focused on "finishing" our new home to move in, that I kept putting off my own needs. I honestly didn't believe it would take so long to be done. It was like running through quicksand. In August, I could feel some effects of the lack of PT and Yoga. I told hubby that I need to get back on track, but I kept putting it off. September came & symptoms began to get worse. October came and I knew I was in a "mini flare". Now the "Mini flare" is a full blown MS Flare. I have had 2 days of IV Steroids, but now they had to stop due to a bladder infection. So I have to take meds & resume IV Steroids on Monday. I am trying to rest & take care of myself, but it is hard when you have 2 kids & responsibilities at home. I just have to take my own advice & make me & my health a priority. I told Dave that I need to look at my PT & Yoga as a necessity for our family because when I go down the whole family is effected. He agreed. As soon as I get stronger from this flare, yoga & Bosu Ball are back. I will start slow, but I need to add it back in. I am going to include the link for the yoga dvd, in case anyone else would like to try it. It is free! I love that it has all different levels and anyone with MS can get benefits even if you can't stand up. The instructor never lets anyone feel bad for how little you do. He always says, "Do what feels good to you, on THIS day." I love that! Here it is: So, so long for now, but you won't be brain free for long. I will not have a lapse between posts like this last one again.

We Now Return to Your Regularly Scheduled Brain Blog

Hello & I'm Sorry, This will mark the first time I have been away from blogging for so long. This post is meant to clarify & explain my absence. My family was in the process of remodeling & redecorating our new home while trying to sell the old one. Meanwhile, we were trying to accomplish all of this before actually moving in. Needless to say this Summer, I did nothing but work on the new house with the only exception coming when I had to clean the old one for a "Showing" to prospective buyers. From June 10th to August 19th, all I did was deliver my newspapers, come home to eat then head to the new house to clean (it was pretty dirty when we bought it), sand basement stairs, strip paint off the stairs to the 2nd floor, strip paint off Kristina's closet door (it was tiger orange and would not go quietly), paint every room, no, every surface of this new house, lay tile in the basement/laundry area, clean up all the drywall dust, paint the basement stairs, refinish the hardwoods for the 2nd floor stairs, plus run every errand and set up service calls for appliances, furniture, carpeting, drywall guy, electrician ... I am tired just reading it all again. We moved all of our furniture & most of our house on August 20th. Then the new house looked like an episode of "Hoarders". I couldn't unpack because now we had to make the old one clean & move in ready. That took about a week. Meanwhile, we were pushing aside boxes to walk thru the new house & trying to find items we needed that were still packed. We finally sold the old house & closed on it on September 30th. So that stress was lifted, and I could now concentrate on the new house. I finished unpacking on Saturday, October 15th. There are still a few doors that need painting and some of the moldings too. I also need to put a 2nd coat on the basement steps. That is all waiting for now. MS has thrown me into a full blown flare & am on IV steroids now. So MS has forced me to sit down & now I have time to update you all here. So we now return to your regularly scheduled brain blog...

Tuesday, April 19, 2011

Brain Release & Heartache

I have never been one to back down from a fight. I am brutally honest at times and could even be called blunt. On the other hand, I also know the value of respect and when to let something go for the greater good. Knowing when to walk away is priceless. Assessing the situation is important. If there is someone in your life that you have a difficult time dealing with, dislike or even hate, interacting with them can prove difficult. If there are children involved then that brings it to another level. For example, imagine having to see an ex-inlaw whom is the mother or father of your niece or nephew. This is a person you have little respect for and would prefer to never see again. In this case you have to remember the children. This is their parent. They are too young to understand adult problems or reasons of animosity. All they will know is "Uncle Jack" is being mean to my Daddy or "Aunt Diane" is talking about my Mommy behind her back. In this instance, I tell myself to treat these jerks as if their kids are watching me. I do it out of respect for the children, not the jerks. When the kids are no where to be found all bets are off.

When trying to repair a relationship that is important to you, I believe in being direct and trying to salvage it. If you are met with resistance or completely shot down then you can walk away knowing you tried to be the bigger person. In most cases, I have found after talking both parties leave the conversation feeling heard and relieved. I believe that my marriage has benefited greatly from this because we talk about everything. We are open and honest with one another and that makes us feel content with our friendship and our marriage. Sometimes I have to push. If you are dealing with a stubborn or proud person you may have to break down the wall they create. My husband can be this way. I know when I push it can make him mad, but I refuse to let something come between us over pride. There are times you need to walk away, but agree to talk about it later with cooler heads. This has caused us to be closer and deepen our trust and love. Dealing with people in this manner has helped me solve many problems and maintain relationships that were important to me.

There are some relationships that cannot be saved. Ones that are toxic and hurtful. Relationships that lead you to say, "Enough is enough" and you just need to let go. This is not always an easy task. Some people you can walk away from easily and not have to interact with them ever again. Others are involved in your life on a regular basis and it can be more challenging. People in your family or at your workplace or some other mainstay, can prove difficult to avoid without hurting yourself or others. However, when you realize that the stress and the drama that someone causes you is effecting your health, your sanity and your spirit, then something has to change. I am at this crossroads.

I am the peacemaker. I am the confidant. I am the strong one that helps my loved ones cope. I am the friend that is always there to lean on. I am the one that will swallow my pride and be the bigger person for the greater good of everyone involved. I take the hits that others can't handle. These are the roles I have taken on in my life with pride, compassion love and respect. I happily will take on the fight to protect the ones I love & care about in this world. I will bite my tongue so my loved one won't have to know how I was hurt or who hurt me. I will smile and endure the stress and abuse to protect my loved one from having to choose sides. If they are in the dark, then they can pretend it isn't happening. I will make every attempt at peace even when I don't care to repair the relationship. I have done this out of respect & love for years. I have only brought minimal attention to the problem and most of it I have kept to myself and never revealed. I want to protect my loved one, but I am not strong enough anymore.

I have endured much at the hands of someone I am supposed to care about and who is supposed to care about me. I have allowed them to disrespect me privately & publicly. I have been lied about and attacked. I have been ignored and hurt. I have been baited to start a fight & I have walked away. I go to my phone and an angry text arrives. I open my email & I am attacked. I call my loved one and hear I am the instigator. All the while wondering, "What happened?" "Why?" & "I did nothing to deserve this."

I have taken on the stress for too long. I have allowed my health to not only be effected, but to be driven to flare ups of my MS that are incapacitating. I have cried for hours while I have debated in my head. I have been unable to care for my kids because I have to stay in bed. All because I allowed hate, lies and desperation to come into my heart. I allowed this because I thought ending that relationship would spiral and cause me to lose the one I had protected for so long. I ache at the thought of losing them. I wish I had the strength to swallow my pride one more time, but I don't. I have to walk away.

I have to walk away for my health, my children, my sanity. I will be polite. I will be respectful in front of my children & the loved one I care about, but my role in this toxic abuse is done. I have to put myself first. I have to make my children a priority even when others cannot. I need to value my own sanity and my own heart and forget the greater good in this lost cause.

I am sorry for the hurt it may cause others. I am sorry for the relationships that may become causalities with this choice. I pray they can survive. That is what breaks my heart the most. For so many years, I fought for peace and harmony because of them. Now that I realize they aren't willing to do the same for me, I have to let go and allow my brain to release the stress and the heartache. I know my own heart, my mind and my body and unfortunately my loved ones forgot my character and fell prey to the lies. If they ever really knew me at all. I love them all & my heart breaks as I have to say it is over and walk away.

Thursday, April 14, 2011

Flexing My Brain

So the culmination of all my orders from my neuro are beginning to come together. I have now started PT, officially, because ♫ ♪ ♫ dun, dun, dun ♫ ♪ ♫ Insurance strikes again. They are such a pain in my ASS--toundingly grateful heart that I actually HAVE health insurance. But, really, must they be so difficult? Must they dictate where I go? Who I see? What I can put in my body? I mean really? I haven't had anyone try & control me this much since I moved out of my parents house. And they didn't always succeed. I was kinda stubborn, but I digress. So the insurance wouldn't cover me taking physical therapy at my neuros office. So, I called them and asked who they would approve. Why play the cat & mouse game? I go to the cat & grab a whisker & say "What the Hell do you want from me???" So they gave me a place. TheraMatrix in Eastpointe. So I was evaluated last Thursday and I started therapy this week.

I like the place, the people are nice and they seem to not only teach you the exercises to develop balance & strength, but help manipulate the muscles too. I have had some mild heat therapy. They are very cautious on this as heat is a trigger to MS. I told them that heat effects me when it is muggy or humid or seems to overtake my whole body. I tend to be fine with a dry heat. Electric blanket, a heating pad put in the right spot, so I said I would try. Now the heat they are using is a moist heat. I immediately recognized that I would be treading a fine line. I had to try though. I knew if the heat could relax the muscles in my neck & back then it could help with releasing the tension and spasticity that may be causing my headaches that leads to the rest of the pain I have been having since January. I tried. It was okay. It effected me, but it wasn't long lasting. I assume it helps that the temperatures outside are not hot. I am able to cool off a little easier because of this.

Today, my PT Therapist added manipulation called Myofascial Release. It felt like a stretching & manipulation of my head & neck. Wikipedia explains it this way: "Fascia is the soft tissue component of the connective tissue that provides support and protection for most structures within the human body, including muscle. This soft tissue can become restricted due to psychogenic disease, overuse, trauma, infectious agents, or inactivity, often resulting in pain, muscle tension, and corresponding diminished blood flow. Although fascia and its corresponding muscle are the main targets of myofascial release, other tissue may be affected as well, including other connective tissue."

This part of their explanation seems to explain how it felt to me, better than the technical stuff above: The indirect myofascial release technique, according to John Barnes, is as follows:

" *Lightly contact the fascia with relaxed hands.
*Slowly stretch the fascia until reaching a barrier/restriction.
*Maintain a light pressure to stretch the barrier for approximately 3-5 mins
*Prior to release, the therapist will feel a therapeutic pulse (e.g. heat).
*As the barrier releases, the hand will feel the motion and softening of the tissue.
*The key is sustained pressure over time."

Whatever it was, I could tell it was going to be helpful. When she finished she explained to me how she can tell if someone is holding a lot of tension in their head or neck. She told me she looks at her fingers. If it won't be beneficial to someone her fingers maintain their natural color. If they can benefit they will have a pink tone. She said "my fingers look like I dipped them in red paint." and showed them to me. She said I have a lot of tension there. I guess so! I have been told this for years by many masseurs who say I hole a lot of tension in my neck & shoulders. This was the first time I changed someone's hand color. If it can help then I'm in!

Today, I also saw the Pain Management Specialist for the first time. I really liked him. He was easy to talk to and was very knowledgeable. I like how his nurse asked me a lot of questions about myself before he came in and he actually read my answers before he met me. He came in and sat down & listened as I described different types of pain & where I experienced it. He offered his own opinion and possible solutions. Nothing I shared with him did he dismiss or make me feel like I was wasting his time. It was nice to be heard and feel cared about. Not all doctors treat their patients this way.

After he evaluated me, we decided on the following approaches. He asked the PT Therapist to add manipulation of neck & shoulders, which you read she did above. (Side note: PT Therapist was very pleased to read this. She said she planned to add it anyway, but was very happy "we are all on the same page") He gave me 6 injections into the muscles in my neck & shoulders. I said before he did it, "I know this is a stupid question, but will it hurt?" He said "The medicine burns a little for a minute." So this is how it went. A poke, ow. Then the burn, oh. Then, wait for it, he rotates the needle in a wide circular motion while still-in-the-muscle. Owwwww! Yep. You read that right. He asked me how I was after the 6th shot. Now I have learned to relax myself and try to let go of my anxieties in this kind of situation because I know to react will only hurt myself. I learned much of this from "Hypno-birthing". Now I didn't hypnotize myself, but I tried to relax myself further so as not to tense up or jerk away. So that probably helped. I told him it did burn. He explained that he knew the manipulation of the needle under the skin feels weird, but it is a type of acupuncture technique that helps to break up the tension. I hope so. He told me it will be a little tender with possible bruising. He said the steroids will start to work in a few days. With these injections and the manipulation from PT, he said we can get a better assessment of how it can help when he sees me in July.

He is also increasing my Baclofen, gradually to help with the spasticity. He said with MS and Fibromyalgia and Pain there is a roller coaster cause and effect. The MS causes over activity in the muscles, which leads to spasticity, which causes the stiffness that leads to pain and then the nerves, also overactive in MS, which reacts to the pain and cause the muscles to tense up and the whole Damn things starts again. His goal is to relax the spasticity to help stop the roller coaster. I was only taking 5mg at bedtime which I always felt was a joke since that is nothing. He wants me to add 5mg 3 times a day for one week. Then each week after that increase one dose to 10mg starting with bedtime, then morning & finally afternoon til it is at 30mg. I am to monitor how I feel as it can lower blood pressure and that is something he wants to hear about like increased dizziness or fainting. If that happens I am to return to the dose before it began & call.

Over the last week, I have had severe moments of being lightheaded to where I felt I would pass out. I mean I thought I was going down for sure. I still am waiting because I have come so close. It gets to the point when you feel like everything is going black & you can hear everything amplified and you sway. I ask myself each time if I've eaten? Drank enough water? yes to both. No explanation. I offered it up in case it was related to the headaches I was getting. These headaches would start as tension in my shoulders and neck, then shoot pain up my neck, spread through my skull, back down my spine & throughout my body. It is how this flare started. I have been getting them 1-2 times a week. Not always leading to the severe pain, but pain that is bad. He asked if I started new meds that week. Nope. So that's why he wanted me to monitor the Baclofen because it can lower blood pressure & what I was describing could be a drop in blood pressure. He is sending me for a "tilt test" for balance. He felt my neuro would order it anyway so he would save me a step. He said it would either provide answers or push us in another direction. I go next week.

To conclude, my neck is tender now. My daughter says the spots are purple, although I have to take her word for it. They are behind my head. The manipulation and Myofascial felt good. I am happy to see if Baclofen can help on a higher dose. Seems like a productive start. I am flexing my brain muscles all over the place!! Who's the meathead now??? Wait. I take that back. I'll try for brainiac or something. I'll work on it. Until we meet again, be well, my friends. Much love to you!

Tuesday, March 15, 2011

Neuro Update The boring version ;)

Hello Family & Friends,
I had my follow up neuro appt today. The good news: I have NOT advanced from Relapsing/Remitting MS to Secondary Progressive MS, which was a concern of mine. That is good.

My MRI results are as follows: Brain: 2 Lesions (no change), Thoracic Spine: No lesions. & Lumbar Spine: No lesions. Neuro "On paper, you look good. In person, by clinical examination, you look terrible."

VEP (Vision Evoked Potentila) Exam: My left eye came back looking as if I have Optic Neuritis, or an "MS Eye". I am being sent to an Optho-Neurologist.

I am getting 3 weeks of Physical Therapy again through the month of April. I also, see the Pain Management Specialist in April.

They did see I have 3 "bulging discs" in my neck & are concerned it may be causing the tension in my neck and the headaches. She claims they are not a real cause for concern & don't require meds or surgery. Also, there are 2 "herniated discs" in my lumbar spine. If serious they could lead to weakness, but she said mine are not constricted enough to be causing mine. She believes it's the MS.

She gave me 2 different kinds of pain patches to try for areas of bad pain. If I like either she will write a prescription.

She suggested I switch injections from Betaseron to Copaxone. The differences go from injecting every other day to everyday. Also, the new one doesn't cause flu-like symptoms, but has more on site reactions. She would like me to switch. She said, "But another neuro could look at your MRIs & say leave her alone, she's fine." She continued with "I am concerned that you are not only bad, but worse this time." She said the choice is mine to switch and there are no guarantees I will do any better. I have had no new lesions since being on Betaseron & in fact, have 2 less now. My concern with switching is if this doesn't work I graduate to hard hitting drugs with side effects like Cancer & Brain Disease. I asked when I need to decide. She said I can take all the time I need.

I decided to wait a month. I am going back after the physical therapy. I want to see if anything else makes a difference before I make a big change like this.

So, I think that is everything. All PT & Appts are in April and conclude on Good Friday. More news after that.

Love, Tammy

MS Story (A Poem)

MS Story (A Poem)

One Night, before bed
There was double-vision in my eye.
It was a little blurry,
But just enough to ask, why?

When I woke the next day,
The blurriness was gone.
I felt my concerns
Were basically wrong.

Then a few weeks later,
I lost my grip.
I dropped my glass
And started to trip.

I thought, “How clumsy of me,
To drop that glass,
To lose my balance
And land on my ass.”

But I shrugged it off
As if I had a bad day.
Pushed it from my mind
And went on my way.

Then one morning,
My legs felt weak.
My hands had tingles
And I stuttered to speak.

That’s when all the weeks
Of excuses came rushing back.
Each moment crystal clear,
As if I had kept track.

Something was wrong.
I knew it in my heart.
That this meant something,
It all played a part.

I was weak and I stumbled,
Exhausted and confused.
My body was trying to tell me,
Inside it was being abused.

Alarm, fear & panic,
Lead to the hospital’s ER.
Which lead to a neuro,
Where the tests would start.

Words & possibilities
All thrown about,
Like Lyme disease & Lupus
So many seeds of doubt.

In the end came the news,
Multiple Sclerosis is the name.
From now on my life
Will never be the same.

I buried myself in books
And internet links.
Different vitamins & shots,
New pills & veins with kinks.

I was overwhelmed with info,
Not sure where to turn.
Friends & family staying close,
But there was so much to learn.

Inside my head was swimming.
What does this all mean?
How much will my life change?
Is it as bad as it seems?

I made tough decisions
And chose my own way.
Some friends disagreed
And wanted to have their say.

Some friends stopped calling,
They weren’t on my side.
MS was too scary for them.
It was easier to hide.

But I cannot hide,
MS is always there.
I have to face it,
No matter how scared.

Each day I wake up,
MS is still there.
Physically & mentally,
Life seems so unfair.

I cried & I mourned
For my life & past dreams.
I found my future changing
So much I wanted to scream.

Then one day I woke up,
And decided I needed to change.
To find a better attitude
In my new body so strange.

I found a way to face it.
To live my life with less regret,
To get a better perspective,
My life is not over yet.

I dreamed of a new future.
Found a way for my heart to mend.
Started living my life on my terms,
Because this is not the end.

~Tammy Malkowski 3/12/2011

Saturday, March 5, 2011

You Be My Friend & I'll Be Yours (A Poem)

Be My Friend & I’ll Be Yours (A Poem)

MS is inside my body
And a little of my heart,
But it isn’t all of me,
It is a small part.

There are definitely days
It seems so huge
That it can consume me
And make me it’s stooge.

I will rise above all it does
And show you my heart
That I am still the same
And the most important part.

Of course I need
Friends & Family to understand
To stand beside me
And to hold my hand.

Just don’t forget the strengths
I have that you knew before
Don’t label me only with MS
And shove the rest of me out the door.

I can still laugh and smile
And care about you
I am still your friend
And love to share what you do.

I still love to shop and hang out
As well as gossip & confide
I still love to giggle & laugh
And stand by your side.

I have my sense of humor,
My smarts and my doubts
I have my intellect
And the crazy advice I spout.

Remember I have MS
So I know you understand
But forget when I want to be me
And enjoy all our plans.

MS is a struggle each day,
But that’s just one thing.
I struggle to never lose
Myself & why I wear his ring.

We choose our spouse, our friends,
And partners for life;
Our Family is who God sent
To support us in times of strife.

Never knowing who’ll stay or go
When fear or judgment gets in the way.
Sometimes friends become family
And true blood fades away.

For the ones who stay
A part of our lives.
You choose us, but we choose too
And help relationships survive.

Keep me close in your heart
And close by your side
We are joined in trust
So together let’s enjoy the ride.

~Tammy Malkowski (3/5/2011)

Dear MS... (A Poem)

Dear MS,

Today, Ms stay hidden
I am with someone I love
Today, I want to forget you
And give you to the Lord above.

I need to take a break
Some time to forget
Tomorrow you’ll come back
And remind of your threat

To steal some moments
To steal some time
But today you’re on vacation
Today my body is mine.

I will smile, I will laugh
I will be who I am inside.
I will cherish each moment
So MS, go to Hell & hide!
~Tammy Malkowski (3/5/2011)

Your Own Show (a poem)

Your Own Show

Be more than your MS
Take charge of your life
This is no easy task
But you can rise above this strife.

Pick your battles, make your mark
But don’t be a slave to plans.
Choose to live, laugh & love
Show MS where you stand.

Show your smile, your grace
Your strength, your wit.
Your smarts, your charms
Your fighting spirit.

Stand straight, stand tall
Make your insides glow.
Be the one to prove you are,
The one who controls your show.

You know in your heart
That your body can feel strange
But it is up to us all
To show inside we didn’t change!

~Tammy Malkowski 3/5/2011

Friday, February 25, 2011

How MS Feels (A Poem)

How MS Feels (A Poem)

My hands shake as my words slur,
But it’s not what you think.
I trip and I sway,
Though I haven’t had a drink.

I could fall at any moment.
And this never leaves my mind
But I’m trying hard to manage
As I’m on this MS ride.

My legs look normal
But feel like rubber.
My arms look strong enough,
But melt like butter.

I have slept for hours,
But my eyes still droop.
I want to walk straight,
But my head loop-de-loops.

You think I’m paying attention,
But my mind has wandered away.
I want to speak clearly,
But I’m stuttering today.

I try to read your email,
But I am seeing double.
I want to come with you,
But walking gives me trouble.

I may need your patience
And your compassion too.
But never your pity
For all I have to do.

I need you to be kind.
And try to understand.
I’m living a new life
Doing the best that I can.

I am making an effort
To be someone who
Is making a difference
In my own life too.

Give me a chance
Be on my side
I am still me
Even with all the drama inside.

My body has changed
But my heart is the same.
I still have a beautiful life
Even when playing the MS game.

The thing I need the most
As you try to understand
Is the comfort and confidence
That I still have my friend.

by Tammy Malkowski (2/25/2011)

Frozen in Mind

Well, I feel as though I am frozen in mind as I wait for the tests to come back. Now that they are completed, I have to be patient. My appointment isn't until March 14th and unless they see a real need (read emergency) to call me in earlier, then I have to wait for that appointment. It would be easier if I felt ANY better, but I don't.

This is the longest and most consistent flare I have ever had. Well, at least that my brain fogged mind can remember. Usually I may have a flare stick around for a few weeks, but during it many sympathies come and go. A few may stay, but MS is constantly changing with me.

Last Summer, because the heat was high all season long, I had a 3 month long flare. During the Summer, I did have days where I felt better than others. This Winter flare is different. The creeping numbness from my toes to my mid-thigh is holding on. The tremors have subsided and only come out at certain times of the day, like when I am overtired or I am overdoing things. This numbness hangs on. That is a little scary to me.

Is it going to stay on as a permanent symptom? Is it going to get worse and lead to more walking aides like a walker or a wheelchair? Will it improve once they figure out what's wrong and have a solution to fix it? Can they even fix it? So many questions.

I should explain for those of you who don't have MS that during a flare up or an exacerbation of MS there are lesions in an MS brain that have become "active" or are in an inflammation period. When they prescribe IV steroids the idea is to "calm" or lessen the inflammation of the lesions. Once a flare-up or exacerbation has passed the lesions will either remain in a calmer state or disappear entirely. The ones that go away usually take a symptom with them. The ones that remain can either hold a symptom that will come or go or it will hold a symptom that will mean permanent damage. For example: My tremors seem to come & go. That has remained since I began having symptoms. Stuttering & slurring have come & gone for me, but less often which indicates, to me, that those lesions heal and may comeback later. Some MS patients may find themselves in a wheelchair after a flare-up or exacerbation. I know some people who were wheelchair bound for 6 months and then eventually regain full use of their legs like nothing ever happened. The ones who remain permanently wheelchair bound would indicate a lesion that has remained and has so much Myelin damage that it won't repair itself. Neuros & researchers don't know why some lesions heal & some others do not. Hopefully, some day they will. (Note: Myelin is the protective covering around your nerves.. When it becomes damaged the signals from your nerves to your brain get all mixed up or don't send the right message or any message at all)

So here I wait for results. Still having trouble walking and really tired. I did got to be fitted for the AFO or leg brace for my right foot. I had to reschedule because apparently I haven't met my $500 deductible for the year yet and they need that just to start. I asked how much the device is and was told $750. After I meet my deductible I have to pay 20% of the $750. $150 is more manageable than $750 so we are waiting. Frankly, I usually meet my deductible in February or March, so I am not worried. After all these tests get submitted to the insurance company, I am sure the deductible will be met and I can move up my appointment. I have waited this long, right?

Speaking of waiting...I also have to wait for the Pain Management Specialist as well. He is apparently booked until mid-April. Both of them were. So I will see him on April 19, 2011. Again, waited this long... I really am interested to see what he has to say. I have been on Darvocet for many years for Fibromyalgia. Until a year ago, I rarely took them unless I was in a lot of pain for a flare in the Fibromyalgia. My prescription typically expired before I had even gotten half way through the 1st bottle. Last year when my MS really flared up with unbearable pain that changed. I began taking them more often. As always they only took the edge off, but never really took the pain away. Since the FDA recalled Darvocet, I had to try something else. Now I am on Tramadol. It does the same as the Darvocet, takes off the edge, but not all the pain is gone. Maybe this Pain Management guy will be able to find a better solution for me. It's his job, right? Who knows what will happen? I am dealing with nerve pain, muscle pain, and now headaches as they are becoming more common too.

I will keep you posted on what I find out. Meanwhile as I remain frozen in my mind & wait for some kind of change I will move forward & smile as I count my blessings in my beautiful life. Remembering my blessings always helps to put things into perspective. Love to you all! Be well and count your own blessings!

Wednesday, February 9, 2011

Short in My Brainwaves

Update from Neuro: I saw the neurologist today, but not the head of the practice. The woman I saw I guess works in conjunction with him. I don't really care because I really liked her. The one thing I notice in this practice is when you see the women neurologists things actually happen. The last woman neuro I saw I got new meds to help me and started physical therapy. This neuro was nice and listened to me and really looked at me. My MS specialist is good, but sometimes I think he is more interested in proving how good he is then actually paying attention to what is going on with me. To be fair he has never seen me in a flare up because he hasn't been at the office when I have come in for an emergency appointment. So we will give him that credit.

Okay, back to my neuro appointment today. After my examination, this neuro wants to give me an MRI of my brain, a thorasic MRI and a Lumbar MRI. The first two are most important and the last one we can wait on until after she reads the first two. Did you get all that? Ok. Moving on. Next she wants to get a new Evoked Potential Vison Test. I haven't had one of these since I was first seen for problems in 2008. In addition to blood work to check for low Vitamin D levels, she wants to send me to their pain management specialist on staff to see if he can help me in that area. She is concerned that some of my pain may be coming as a result of the tension in my neck & shoulders.

She also agreed with me that the nerve pain meds need to be increased and claimed I was on a "baby" dose compared to what some of her patients are on. So she is upping it a little to see how I do at first and then increasing a little more after that. Still no where near the max, but hoping that will help with the burning pain, but also should help with weakness & numbness. The last thing she would like me to do is be fitted for a leg brace for my right leg. I will pause for a moment as you take that in. I am not exactly thrilled at this scenario. She says that it will help me to not trip or fall because it will keep my foot in a position to not drag or "drop". Yippee. A leg brace. Woo Hoo. Okay, this is not hte worst thing that could happen to me, but it still isn't great. I will deal with it. Maybe it can help? Maybe it can't? But I will try.

So there you have it. You are all updated on my short in my brainwaves. I will report back after all the tests are done. I am supposed to go back and see her on March 14, 2011. Until then be well, be happy and smile like you did something naughty. It will keep the neighbors talking and they deserve to worry, right? I'm not worried so let someone else freak out about their own paranoias. ;)

I've Got Some Nerve

Hello Everyone,
So last I posted that I would be starting IV steroids. That took some detours. When I arrived that Monday I was told I had a bladder infection (UTI) and would need to be on antibiotics for a week before I could start steroids. I looked at her and said, "So you are going to make me suffer for another week?" She told me because the steroids will lower my immune system that having an infection already in my body could cause it to spread to other organs and put me into the hospital. So we waited. I didn't even have an symptoms to let me know I had a UTI. I asked if that was normal. She said some people don't get any symptoms which can be dangerous because they can end up septic. Wonderful. I used to get symptoms. Hopefully this isn't a pattern. What I did find out was other people with MS find that a UTI is their first symptom towards having an MS flare up. That was news to me. Although this hasn't happened to me before, but clearly I need to be aware.

So after a week I started IV Steroids for a 3 day prescription. I had to skip a day to get my 3rd dose due to the "Blizzard" snow storm of Groundhog Day. Everything went "normal" for the infusions. Then the withdrawal from the steroids began. When this happens you have never felt so mean. You know it's not rational, but anyone around you annoys you so much. You imagine doing bad things to them or plot in your mind how you will seek revenge. I know this is a bad side effect from the steroid withdrawal, so I try to avoid speaking. I stay inside myself. There are certain people I will not speak to during steroids and a flare up. Those people in your life who have the possibility of either starting a fight or just can be so annoying on a good day. Those people I screen their calls, skip their emails and just avoid seeing them altogether. No good can come of it. It doesn't even stop at anger or rage as many refer to it. There is also lack of compassion. I mean you hear someone's problems and think they are whiny or bring it on themselves or just pathetic. It is so unnerving how disconnected I can feel because it is nothing like my true self. It is truly not me as the steroids leave my system.

So the withdrawal passes. Now at first I should feel tired and foggy. The actual "feeling better" part of getting the steroids can be a week or two after the infusions begin. I typically get some little moments of "better", but there is a process your body does go through. It's a long process, but in the end all worth it. That didn't happen this time.

On Super Bowl Sunday, I started the day feeling...improved. Not better, but a slight feeling of improving. So I felt a little energy and a little less pain. I was actually optimistic. I visited with my mom between my newspaper route and throwing "sample newspapers". When I left I noticed my tremors were increasing. I felt that not only were my hands shaking, but my whole upper torso was vibrating. It isn't unusual for my symptoms to be stronger on a Sunday because it is a long day of work for me. I usually come home and take a long nap and it subsides a bit. This was not going to be your typical Sunday. As I threw the sample papers, I began shaking more and my feet and calves started to go numb. More numb than I had ever experienced. My hands were numb as well. I felt as if the steering wheel was 3 times it's size in my hand. My sensation of touch iis that off. I got severe brain fog and disorientation too. I found myself wandering around Walgreens and not knowing why I was there instead of at home. I kept thinking, "You should be home. What are you doing? Why are you even here?" I ended up in their toy aisle and picked something out for my kids and then some candy for them. I paid & got back in my car & drove the block I needed to get home.

When I walked in, I was shaking so much and still felt disoriented. I gave the kids their surprises and my husband came downstairs. I handed him everything I had in my hands & tried to take off my coat. I knew from his face I didn't look good. I knew how I felt, so I can only imagine. He said, "Good day, huh?" I said, "No, not at all. I just feel worse than I have." He watched me wander around then said, "Should I be taking you to the hospital?" I said, "No. It's not like I'm dying. I just am having bad symptoms right now." He made me lunch and then sent me to take my nap. As I crawled into bed, I glanced at the Michael J. Fox book, "Always Looking Up!" on my nightstand. I feel him & I approach our diseases the same way; with optimism and realism. I spoke out loud to his picture on my book. "Somewhere you may be shaking as bad as I am and someone is wondering why we are still so damn happy."

When I woke up, the tremors were slightly better. The brain fog was gone, but the numbness from my feet to my calves was there. It feels like my body is floating above my legs. I thought, I finally understand how my friend, Kelly, can prop herself up on her legs and even take a few steps when she cannot feel her legs. She is wheelchair bound most of the time, but her hips work. She and her brain still can "know" how to walk, her feet just can't feel where she steps. This is how I felt. I could see I was walking and moving forward, but I couldn't feel the ground. It is a bizarre thought and sight.

The next morning. I did my newspaper route as usual. I couldn't feel my feet still, but tremors and numbness were less severe. It seems the morning brings improvement to my symptoms, but as my day goes on they progress. This is why I don't need my cane when I deliver papers, but will need it as the day goes on. As I delivered, I started feeling "wobbily". I felt like my legs would buckle or I may collapse. I kept going slowly until I finished. When I came home Dave wanted me to call my neuro. I said "I don't know if this is gonna last." A new symptom needs to present itself for 24-48 hours without going away. I reminded him Mondays aren't always my best day. If it continued I would call in the morning. That was the plan anyway.

Dave left for work and then I asked my son (4 yrs old) to help me get dinner in the crockpot. I wanted to make sure we ate and a friend of mine and given me a recipie for crockpot lasagna. The only real work I had to do was brown ground sausage in a skillet before starting the layers. I really couldn't ask my son to do this so I propped myself up against the stove and browned the sausage. He helped me get the crockpot on the table and we began the layers. We were almost done when I felt myself starting to go down. I felt like I was going to collapse to the floor and maybe black out. It happened so fast, but I grabbed the chair next to me and flung myself into the seat. I immediately put my head down. "What's wrong, Mommy?" "Um, I'm ok. I don't feel so good." He looked at me with concern. "That wasn't too good was it, Honey?" "No." We finished the layers and I plugged in the crockpot and called my neuro.

I left a message around 3pm describing my symptoms and that I had finished the IV steroids last week. I didn't know if this was considered normal, but these were not the symptoms that lead me to the steroids and in fact these were brand new symptoms for me. I had had numbness, but not to this degree. Kelly calls it "creeping numbness". It feels like it is slowly creeping up your limbs. That is how it felt because even though it had stayed in the feet and calves consistently, it kept drifting or creeping to my thighs. I also have had tremors in my hands before, but the vibrating torso was new. I have to ask about my fingernails too. I don't know if it's relevant, but my fingernails have been like paper the last 2 weeks. They keep tearing. and nicking. I cut them short and tried putting clear nail polish on so they could grow and be protected. The nail polish didn't help and came off the next day and still my nails keep ripping. So we will see if that is relevant. Maybe a side effect from the steroids?

I didn't get a callback from the neuro on Monday or Tuesday morning. I left another message at noon on Tuesday. I finally got a call back around 3pm. Dr Beall wants to see me the next day. She tells me he will be at the "Utica" Office. I said, "Why is it always have to be there?" (This particular office is a half of an hour drive each way. Not only are they slow to get me in & out so I can be home on time, but the drive is long for me.) She said "That's where he will be." I said, "I cannot feel my feet or my calves. I just don't feel comfortable driving that far like this." (Shouldn't this be commonsense?) She said, "Well I can see if I can fit you in with another neuro at our Clinton Township office." (This office is a half of a mile from my house.) "That's fine." So she sets me up to see Dr Giancarlo for Wednesday at 3:15pm. He is the head of the practice, so fine with me. "I will have to bring my kids if I come at that time." She said, "That should be fine." I will take bringing two bored kids over driving too far. I haven't had any trouble driving, but why risk it with these kinds of symptoms?

So today I will see the neuro and see what he thinks. Maybe 2 more days of steroids? Maybe new meds? I have had some questions about my meds. I even went to have a discussion with my pharmacist to question dosage and interactions. I had heard two of my meds weren't supposed to be prescribed together. That was confusing to me as they were prescribed for me TOGETHER to work TOGETHER on the same symptom, nerve pain. The pharmacist explained that the doses were low enough and that the "specialists" do different things with drugs to get different benefits. She told me I am being monitored and I had no need for concern. I had asked her about my new pain meds too. I felt I was taking them as directed, but wanted to know when to stop? How do I know if the pain is gone if I am taking the pain meds around the clock. I would think it had subsided and I would skip a dose. By the time the next dose after that would come around, the pain would come back hard. She asked me if I was in pain then. I answered "Yes" She said I should be taking them. I told her I had I could still feel the pain. I wondered if the nerve pain med needed to be increased. She agreed that may be a possibility, so I will ask at the appt about that too. She also told me to stop skipping pain meds. She said, "Take the pain meds when you should. Keep doing that until you feel your flare is gone and then you can start to stop. I appreciate that you don't want to feel dependent on them, but don't be a martyr. Right now you need them so it isn't a dependency. It's a need." So I have been listening to her. Talking at that little window at the pharmacy can be beneficial. I brought a list of all my meds and doses and when I take them. It was very interesting to have her explain what I should consider changing and how it helped my body. I definitely feel more informed and confident over why I take what I was prescribed instead of blindly following my neuros advice. I trust him, but sometimes I can feel like I just don't know any better so I should do as they say. It is nice to have someone explain why and then understand that I am right to trust him and to trust myself. I can ask better questions now too.

So today I will talk to the neuro and let him know that "I've got some nerve" acting up and bringing me to new places of MS. The ride with MS is never boring, but I am still going to keep smiling all the way. It is just who I am. Michael J. Fox and I smiling as if we have some secret that we may share with you or we may not. The secret is no matter how out of control my body is, I still have control of my mind, my attitude and my spirit. So Yippee Kye Aye, we are at the rodeo and kicking up our heels in this life because we can!

Friday, January 21, 2011

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

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

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

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

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

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

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

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

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

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

Over My Shoulder (A Poem)

Over My Shoulder (A Poem)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Tammy Malkowski (1/21/2011)

Wednesday, January 12, 2011

A Mom with MS ( A Poem)

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

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

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

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

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

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

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

~Tammy Malkowski (January 12, 2011)

Taking Charge ( A Poem)

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

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

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

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

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

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

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

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

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

~Tammy Malkowski ( January 12, 2011)