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!

During one of my first relapses when I had to be on steroids, my doctor told me this little trick to eat less carbs while taking the steroids. This would help avoid unnecessary weight gain that can happen with taking steroids. This round of medication was for fourteen days. And let me tell you. The first 6 were horrible! I remembering thinking how starved I was, how hungry I was, and just wanted to eat a piece of bread. But as instructed, I did not for those fourteen days. Then something changed.

On about the last week of drugs, I felt great. I felt like I had more energy, I felt healthy, I felt all and all good. Something I had not felt in a while. So I remember thinking that my food must have a lot to do with how I feel and am able to go about my days. So ever since then, I have adapted a low-carb mentality as far as my eating goes.

Now, do not get me wrong, I still have carbs, just am more aware of how many I have in a day. I am more aware of what foods and drinks have a high carb intake and what things do not. You truly would be shocked when you read the labels. It does not mean you cannot eat the foods you like, just have to in moderation. I have found with eating like this, my fatigue is somewhat less and I feel better.

My tips on healthy eating:

• Make a menu at the beginning of week so you know what you are going to have for dinners the whole week. This way you can balance your meals and know that you have food ready so you are not tempted to go for not so good decision foods.

• Be prepared, Make sure you have all your ingredients and items needed for your menu. There is nothing worse then getting your recipe going to realize you do not have everything you need.

• Make your snacks easily accessible. That means portion out your fruit and vegetables in baggies so you can quick grab them and go. Portion out all your snacks like this so you have healthy, smart snacks to have.

• Always eat breakfast. Breakfast is the most important meal of your day. Make sure you make the time to be able to prepare a healthy breakfast of egg whites, and such. Make the time, no excuses!

• Drink lots of water throughout the day. As much as you can, when you can, drink water. Add lemon or lime to it, to add some extra flavor if needed.

• Protein shakes are a good choice after workouts and as a snack in between. And they do taste good!

• Give yourself a break. If you want to eat McDonalds, knock yourself out, just do not eat it every day or every week! Everything is fine in moderation!

Hope this helps you on your eating habits. I will provide some recipes that my husband and I love in a later post!

 

 

 

 

With being diagnosed with MS, comes a lot of new doctors, nurses, office managers, insurance agents, drug companies, and so forth. You are going to have contacts you did not even know you needed until now. They are now all part of your Health Care Team! They are all a vital part of your health care needs and important resources to have.

Here is some advice to organize your new team information and resources.

1. Get yourself a binder, and get the biggest one you can because you are going to need it. Purchase dividers and folders for it to be organized. If you do not want to use a binder, file folders in a filing cabinet work just as well. As long as you keep them organized too.
2. In the beginning of your binder or folders, write down all your contact information for your new Health Care Team. Write down all your doctors name’s, addresses, phone numbers, emails, contact person, and emergency number to call. Write down all your insurance information, including the number, insurance phone number, group number, and id number. They will always ask you for this information. Write down your drug company’s phone number, id number, and name of all medications from them. Also, their hours of operation so you know ahead of time when to call.
3. Keep all EOB ( explanation of benefits) from your insurance company on file so you have a reference to them.
4. Keep all bills together in groups of where they are paid to. Also, when paying the bill, if paying by check, write down the date you wrote the check, the check number, and how much you paid for future reference if needed. Ifpaid online, write down the date in which you make the online payment and the amount. This all will help in the event of a missing payment or uncertain statement charge.
5. Keep all contact information for your other Health Care Team contacts like massage therapists, physical therapists, counselors, and so forth. Having all the right information at the tip of your fingers is crucial to your health. And less stress!
6. Bring a notebook to every appointment. Have questions or concerns written down before each appointment so you do not forget to ask. Also, write down the information the doctors share with you so you can refer back to it when you get home. Doctor appointments can be overwhelming at times and a lot of information is thrown at you all at once. So be prepared, take notes, and you will be fine.
7. Tell a family member, loved one, roommate, whoever is around you the most, where this Health Care Team information is located. Just in case in the event you cannot get to it, they know where to go to help you out right away.

So there you have it. Welcome to this new team that will only benefit you in the long run and who wants you to be the healthiest you can be. It will take some time and work to get all organized, but make sure you do this step for yourself and your health!

This is crucial to your well being. And like everything with having MS, it is not going to be easy to do and happen over night. But, you have to do it. Your health is now going to be your first priority in life. It trumps over your job, your relationships, your hobbies, your social life, and everything in between. If you are not healthy, then things in life that you want and do are going to be achievable. I know this may sound harsh, but people that is now your reality. You have to take care of yourself from here on out. No excuses!

Each day you wake up, after thanking God for the day, take an evaluation of how your body feels. Is something in pain, is something numb, is something weak, are you emotionally drained? Then base your day and activities on what you are feeling. If you are feeling great, fantastic! Do not overdue it and know your limits. And again, thank God for this great day! If something is in pain or bothersome, take action on how you are going to cope with the condition, how you are going to make your day easier, and know what to do to get yourself stronger. It is going to be an everyday, 365 days a year job, to put your health first and stick to taking care of yourself. You are worth doing this and for those who love and care about you, they want this for you too.

Some people may not understand why you may not be able to do something or attend an event like you usually would. But you have to remember, they are not the ones fighting MS. You are, and if they cannot accept that you are taking care of yourself, you do not need them in your life. Again, harsh, but true. Surround yourself with those who will inspire you to be the healthiest and best you can be.

Find the time to make your meals up ahead that are healthy and nutritious to your body. Eat the foods that will give you more strength and power to keep on fighting. Exercise to your own body’s health limits. And do it as many days a week as you can. With again, not overdoing it. Know what your body is feeling that day, and plan your exercise according to what is strong and what is weak that day. Always remember to stay cool when exercising so have plenty of cold water with you at all times. Do your exercising when it fits in with your schedule and no excuses with this. Put your health and yourself first!

I had a somewhat hard time with this concept as well. I love my job and love what I do but when I was first diagnosed, I still worked as much as I could. I never slowed down with my work schedule and my social life schedule. It wasn’t till I was not getting stronger that things had to change. My doctor told me I was at about 95% of doing all that I can, but to slow down a bit more would help. My new mantra in life became “If you do not take care of yourself, you won’t be able to take care of others.” I want to take care of others, take care of my clients, and take care of my life. So, I am going to do just that!