Happy Summer! With schools getting out or already out…summer is right around the corner. And that means here comes the HEAT. Now some of you like the heat but for those with MS, the heat can be a real bummer.

I know personally, too hot and humid just makes me feel awful. It makes me feel like someone put a straw in me and sucked the life of me right out. It sucks. But it can be somewhat managed, you just have to be prepared and ready,

So here are my tips for you and how to beat the heat this summer:

1. Lots and lots of cold water ready and on hand.

2. Air conditioned places, make sure your house, workplace, car, and anywhere you spend a lot of time is air conditioned or at least well ventilated to be cooled down. For example, if your gym is too hot, bring a fan to have while you work out.

3. If wanting to be outside, be somewhere where you can be in the water if a pool or lake. Any cool down way helps out a lot.

4. Place ice packs on the back of your neck if overheated. You can even run cold water on your wrists.

5.Wear lose and light colored clothing.

6. For those with optic neuritis issues, always have sunglasses with you to protect your eyes.

7. Carry a handheld fan or hat to shade your face.

8. Try to avoid bad sunburn.

9.Know when you are getting over heated and don’t push it.

10. Enjoy your summer! Just take precautionary measures, be smart, be prepared, and live for the moment! Summer is a fun time! Have a blast!!

Attitude is everything

This statement is the truth. Your attitude from the moment you wake up in the morning sets your day. If you wake up in a negative attitude or in a bad mood, your day will reflect that. Here is a little tip for you…wake up feeling positive, happy, and grateful for another day given to you. Then, the rest of your day will be good too! If you go to bed in a bad mood or negative feeling, guess what? Those feelings will still be there in the morning unless you change that.

So much of our time is wasted by being in a bad mood, mad or someone or something, or feeling negative about life. Change that if you can. And do it quickly. Choose to live a life of happiness, positive things and people, a life of good, and a life you deserve. Life is a precious thing, we do not know what may be in our plan, so enjoy it while you can with a positive attitude and happiness will follow.

I believe your attitude about your health truly has an impact on how you are. It is by no menas a cure but I think its free medicine in a way. I choose to have a positive attitude about my MS. I don’t look at it negatively, although I do not want it at all, but I do. So I chose to look at it in a way of…I have MS,  what can I do now with this that can help others? What can I do with my MS to inspire others? I hope this site is doing just that. I feel my health has benefited from my attitude. You should try this too! Its obviously not going to take it away but just make it a little bit better:)

There are many emotions associated with having MS

When first diagnosed with MS, I was in not necessarily denial but, ” Are you kidding me?” attitude. And then more I do not have time for this. I have things I want to accomplish and do in my life, this will be in the way. I have come to now find out that statement is not true.

There was then the pitty or “poor you” looks by people when the word got out that I was diagnosed with MS. But most amazingly there was the love, care and concern from people that was so sweet and overwhelming. I mean overwhelming in the nicest way. I never realized how much love and care was out there from so many people. Words can not express how grateful I am for all of the care, concern, and prayers for my health.

I then felt like no one understood what I was going through. I was 23 years old wanting to lead a normal young in my 20’s life. My life was just altered and I adapted to it, I had no choice. When many of my friends were going through their life wondering what they were doing on weekends, I was making decisions of what treatment do I go on to not be in a wheelchair one day. Really put things into perspective earlier than others. And I am grateful for that, crazy as it may sound. I am.

I did go through a time of being mad about having the disease. You would not be human if you did not go through all the emotions of a change in life. I think it is almost a good thing to get mad and then get your fight back. It puts more power and determination when you get mad to then get better and start fighting. And fighting hard. So when you do feel mad, go through it, and get your fight on when you can, the sooner the better.

Emotions of being scared to death occur not just at the beginning of diagnosis but the whole way through. I am scared probably every day hoping and praying the disease does not take a turn or get worse. I pray that my health stays where it is and that I can be guided to the life I am set to have. I am scared now to not be an able mom one day. It is my goal to be the most able mom that I can be to my daughters. You better believe I will do anything and everything to be just that for them. I am scared to tell them one day, “Mommy has a disease called MS.” I do not want them scared or see me weak. But I know I will have to have this conversation one day whether I want to or not. And it will be okay. I am fighting for them!

I have felt the most incredible sense of gratitude through my diagnosis of MS. I have so many wonderful and amazing people in my life who support me and the cause of fighting MS. It shows in the Fundraisers I have and all the people who come to them and support the cause. It also shows in my team members of Marci’s Stampede at the MS WALK’s.  I am shown the thoughtfulness of every person who has just even asked how I am. Those three simple words of ” How are you?” mean so much more than anyone knows. A simple sign of concern is just amazing. I am also grateful for my doctors and nurses who have helped me along the way. I am grateful that this disease has still allowed me to accomplish all my life goals, even if they have to be altered in some ways. I am still living out my life, and loving it!

Hope those of you with MS can relate to these emotions and know that it is all part of having a health concern. Let yourself go through each emotion. Just don’t stay too long in the negative phases. Go through them then get out and get fighting. You are worth it and you deserve the life you want.

It is absolutely amazing how so many people inspire me each day.

I am especially inspired by recent events of people being so giving and generous to my MS WALK 2013 team, Marci’s Stampede. Because of so many wonderful people in my life, my walk team has been the TOP TEAM for the Saint Charles site for WALK MS.

Each year while trying to raise funds to help fight MS, I am more and more grateful and honored to have people donate to the cause. Each donation gives me hope to know that new and better medications will come from the money raised, financial assistance will be available to help pay for the expensive medications, research will be continued to help those living with MS and hopefully one day…A CURE!!!! And so much more.

To all those who donate not only to my team but to the hundreds of other walk teams and to the MS organizations as a whole…THANK YOU, THANK YOU, THANK YOU!!!! It is truly because of all the kind and generous people out there that hope and belief that there is still good in this world!

The whole purpose of this website it to help others living with MS. You all have inspired me to do this for others and continue to inspire me to do more and hopefully help as many as I can living with MS. Thank you for putting the light in me to give back to others:)

My life is even better now…

On December 18th, 2012, my life changed the most amazing way by having my twin daughters…

Harper Marie and Delani Maxine

The girls are the love of my life and I could not be any happier than I am being a mommy!

During the 8 months I was pregnant with the girls, I felt great with my MS. My doctor told me I would feel good during the pregnancy and he was right. I then breastfed for three months and still felt great during that time. It was such an amazing and shocking feeling for 11 months to almost forget I have MS. It was a feeling I probably will never forget and wish I could feel every day, but am grateful I at least had a wonderful pregnancy, and most importantly had two beautiful and healthy babies.

I will now start my treatment again of Tysaburi. I am looking forward to getting started again on a treatment to slow the progression of this disease down. I now have an additional two reasons to take care of myself. Two VERY important reasons to do all that I can to stay healthy and mobile for our daughters. I want to be an able and healthy mommy as long as I can. So, watch out stupid MS, I am coming for you to knock you down and fight you with all that I have!!!

This is a picture of my MS treatment called Tysaburi. I do this once a month for about two hours. This treatment has given me my life back with no weekly injections, no side effects, and no constant reminder each week that I am going to feel sick for two days like the other form of treatment did. I am a huge advocate of this drug. If you have any questions or concerns, I would love to help!

 

 

 

This may be a difficult area for some people and not for others. To me, I do not see the shame or reason in not telling others.  As long as this is not the only thing out talk about. It is not the first thing out of my mouth when I talk to people. But if brought up or if needed to be known, I do not mind sharing thatI have it.  I may have MS, but MS does not have me.  I think the more people know about it, the more awareness we are bringing to MS and to one day find a cure. I think the sole purpose that I do share the fact that I have MS, is to educate people. Stop the rumors before they start, get people educated on what is really going on with your health now, and let people know how strong you are. The more people know about the disease, and the REAL truth about it, the better.

One of the difficult things to me when telling people I have MS is the look you get after you say the word MS. Some are completely shocked and more often then not you get the “pitty look.” That one is the worst. I know people do not mean it or may not even realize they are doing it, but the look of poor you is never a fun one to receive. But then my next comment is, “ So now I fight this disease with everything I got, take care of myself, and pray one day there will be a cure so no one else has to go through this.” People tend to then respond with a better outlook and you don’t feel as bad.

Telling my family members was the strangest and hardest thing to do. When I was first officially diagnosed my husband, then boyfriend at the time, and my parents were all with me. The looks on their faces I will never forget. Then after that the rest of my family one by one found it. It was hard to hear others cry over something I have, but knew I had to let them go through the emotions of it all and be grateful they care that much to be upset for me. Still made it hard, because the more people found out and more it was talked about the more real it became.  As weeks went on after being diagnosed, the cards, flowers, and phone calls came pouring in. Let me tell you, I never felt so loved in my life. And people you would never imagine or think of reached out to me. I said it was like living my “Live” funeral.  I heard and was told things I felt that you would only hear when you die and at your funeral. I know that may seem strange but its the best way to put it. It was so incredibly touching, words can’t even describe. I will never ever forget that feeling as long as I live.

It makes you really think what truly matters in life when things like this happen. And like I tell my family, if I have to take this one for the team of having this stupid disease so we all can see what matters in life, I will.

So if you are having trouble finding the words telling others, educate them. That is all you need to do. You do not need sympathy, you need fighters and supporters on your side. So let them know what’s going on so they can push you to be the healthiest you can be!

I found this magazine clipping titled Awareness Rules. I love what it says about living with MS and I think for everyone too!

1. Take your time, deservedly

2. Nap, necessarily

3. Limit yourself, for yourself

4. Prepare, always

5. Use aids, ably

6. Go anyplace, safely

7. Research options, smartly

8. See medical professionals, professionally

9. Compete, gently

10. Save, wisely

Is this not so true on every count? Just because you have MS does not mean you can not live a full an able life. You can! We just have to “Live a Life of Adjustments” is how I like to put it as. But it does not mean we can not life an amazing life. I am and so can you!

My Journey with MS, and what a ride it has been…

I was driving to an appointment the other day and for some reason got these overwhelming feelings of gratitude, fear, anger, and hope all at once. Quite a combo of emotions, huh? But it is true. I think the song playing sparked these emotions as well. I then just started to cry thinking of all that has gone on in my life in the past five years since being diagnosed with MS.

I started to think of how far I have come and how far I still need to go with this disease. I was thinking how much it really sucked to be sick every single week from the weekly injection of Avonex. Even with that feeling, I still do it every week and was grateful that it was working for those four years. I just did it, I did not have time to have a pity party (although I had my fair share of them) and did not have time to get too pissed off about it (even though I did get really mad at times too). But in the big picture, I did it and I did it well if you asked me! Then a year ago I started a new treatment called Tysaburi, which I was totally excited about because it did not have any side effects like the other treatment. However, the one concern was a brain infection that I could acquire, that could possibly, take my life. Hello! That is scary! But I knew in my heart that God is taking care of me and he would not give this option unless he felt it was worth it. And it is! It is a treatment through an IV once a month for two hours and Done! The fight continues and I feel great doing it! Soo appreciative of the advancements in medicine and all those working so hard to find new and better treatments and one day a CURE!

I thought of all the up’s and down’s with not only the disease, the medications, the emotions, the finances, the insurance, and so much more. It truly has been a roller coaster of life changing events that no one can really explain unless they have gone through something like this. And not too many people out there have, so for all those who’s lives have been a breeze, you are lucky and  I hope you know it and appreciate it. But like I have said before, I would not change my life’s path at all. It has made me the person I am today.

I was thinking of all the things that have happened in the past five years and how amazing my life really is. I have been blessed with so much in my life, more than I think I even realize at times. I have the most amazing support anyone could ask for. I am able to see this first hand with having MS and feel lucky to be able to recognize this rather than not. Nathan and I bought our first home in 2009 and love it! Nathan asked me to marry him on Christmas Eve 2009 and got married in June 2010! And now the most amazing joy of it all, we are expecting TWINS who will be here in December 2012!!! If you ask me, this has been an unbelievable, amazing past five years! All those tears I shed were worth it and put my life in perspective on how lucky I am.

My wish for you…

Take time to reflect on your own life. I bet you will realize how amazing it is too. What are you grateful for? Have things happened that really make you realize that you are one lucky person? Think about it…

XOXO

Hi there! I wanted to share a recipe that is not only good for you but delicious as well! I make this with our steak about every Sunday. Try it out!

Sweet Potato Fries

Preheat oven to 400 degress. On a large jelly roll pan, use Reynolds Wrap Non-Stick Foil, and lay out the size of pan.

Ingredients:

3-4 small-medium size sweet potatoes

Olive Oil

Salt and Pepper

Cinnamon

Directions:

1. Cut up potatoes in fry like size. Do not get too thick or thin with pieces.

2.Place fries in large bowl and coat with olive oil.

3. Place on jelly roll pan on foil and sprinkle with salt, pepper, and cinnamon.

4. Bake at 400 degrees 20 minutes then flip fries over and bake for another 20 minutes.

We love these fries and you will too!