Your MS

This is a simple for matter of fact statement. And it could not be any truer than this. “Your MS” is yours and only yours. No one with MS has the exact same symptoms as the next person with MS. This is a major confusing and sometimes emotionally hard thing. This is one of the reasons why there is no cure for MS yet. Each person experiences their own things. Although there are many things those with MS experience are the same. So remember that since this is Your MS, you need to address each symptom, reaction, feeling, etc. Don’t just think it’s nothing when it may or may not be.

Know that you are doing great, you are not alone, and take care of you and Your MS.

The treatment you take for your MS work for you and may not work for the next person. It’s crazy how it all works. But thankfully there are many treatment options so you can find the one that works best for you. It may happen that one works for a while, then it does not. Talk to your doctor for other options of treatment that will make you feel the best you can. There are always options in life no matter what, so don’t give up.

When talking with others with MS, try not to compare because again, its Your MS. Things may work great for others and you not so much. That is okay. But comparing will only get you frustrated, so do whats best for you.  Do keep an open mind on what others may be trying or on and if you feel it would be a good fit for you then great!

Be healthy, be you, and be true:)

MSF Ambassador

I have a new adventure that I am so excited to be a part of. I am part of a group of people who are the MS Foundation Ambassadors. This is an amazing opportunity to be part of something that is really going to help others living with MS. I have had three weeks of over the phone training  (the Foundation is located in Florida) and have one more to go. I will be doing as many events, public speaking, writing, visits to doctors offices, visits to people with MS, and so much more with this adventure. And I can not wait!

This Foundation is a wonderful one to be a part of. This past week we went over all the Foundation has to offer and what a role we can help play in this. It is incredible all that they have done and continue to do to help those living with MS. The foundation is also all funded by donations as well. Pretty amazing, it is because of such giving people that this is possible.

Meeting the other 14 Ambassadors and hearing their story has been pretty cool too. We all have this darn disease but yet we are all effected in our own ways. Not one of us has experienced exactly the same symptoms or relapses. It is wild.

But we all do have one thing in common…

We will not give up! We are strong! And we want to help others.

What an amazing group and Foundation to be part of!

Today at my MS treatment, I became overwhelmed with a grateful thought of how lucky I really am.

While sitting there, I witnessed a women come in for a treatment for pain. She had her young grandson with her. She was in a wheelchair and unable to walk. How sad it that? She can not even play with her grandson, who let me tell you was full of energy! I thought how lucky people are to walk, to be mobile, to be independent, to do whatever they want. Something, I think many of us take for granted.

Then came a women who had a scarf around her head covering her bald head. She not only has MS but cancer too.Double suck-y whammy! But she had the brightest smile on her face, was telling people to have a good day, and was in great spirits. How inspiring was she to witness from a room off to the side where I was. She didn’t even see or talk to me but made me really think and be thankful for how lucky I really am.

So with this post I am asking you to really take a good look at your life and see how wonderful it truly is. So many others are going through way worse things then you are or that you may ever go through. Be grateful for that. Take no one and nothing for granted. Life is short. Be the best person you can be and remember that you are so lucky to live the life you are living.

And for those with MS or any other illness remember this….

This is your life, your story to tell. It may be not so fun at times but it is yours. Why not make it a memorable life? A life to lead examples for others to follow, making a difference in this world piece by piece. What a wonderful life and wonderful world it can be.

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!