I asked my brother, Dan, to write on his advice for those who have siblings with MS. Thanks Dan for taking the time to write this!

Here is what he had to say…

Many years ago I found out that my younger sister, Marci, was diagnosed with MS.  I truly did not know what to think at that time.  I have a good friend whose mother has MS and she has a hard time walking and needs to be in a wheelchair most the time.  I thought to myself, “Is this how my sister was going to live the rest of her life?”  After I did some research, I realized that a lot of people have MS and you wouldn’t know it.  So after this research, I found some positive out of this situation.

As the years went on I could see my sister fight, struggle, and go through the pain of MS, however she did not let it affect her and she kept on as if she had nothing.  Like most people with diseases they want to be treated “normal” and not be an “outcast” because they have a disease or illness.  This holds true with my sister.  I don’t look at her any differently than I did growing up.  Yes she has MS, but she also has the fight to attack MS the best she can.  The best advice I could give anyone that knows someone with a disease or illness is to be supportive.  You can never have enough support especially when you are attacking a disease that currently has no cure.

Now my sister has twin girls that are 15 months old and everyone is healthy and happy.  Sometimes I even forget my sister has MS, but I know deep inside that she has a long road ahead of her and I hope she never gives up attacking this disease.

MSFocus is such an amazing source of information for those with MS and those with loved ones with MS. The MSF ( Multiple Sclerosis Foundation) is so wonderful all they do for those living with MS.  If you would like to receive their MSFocus Magazine go to www.msfocus.org to sign up and for a world of valuable information. On a side note, this magazine is full of information that is so useful and not full of ads or drug information. One of the perks of this organization! Enjoy!!

Have you seen the Breast Cancer commercial that starts off with…

“Right now there is someone who needs you. They have just been told they have breast cancer…”

Every time I hear this commercial, I can not help but think this is true for so many illnesses. I think,” There is someone out there that can use the help with just being diagnosed with MS.” It gets to me every time and I think, people need help out there when they are first told we have MS. They will need help beyond the diagnosis too.

I want to make it my mission for those being diagnosed with MS and any illness for that matter, to know they are not alone, there is help and support out there, and you are doing great! So thank you to the commercial for constantly reminding me of this. And hope this will help you too, to help others. We are all in this together, whether we like it or not, we are. I am here to help and hope you pass along the hope and help as well!

This is Mary, my nurse who performs my infusions. She is a wonderful lady who makes us all feel better while being treated. I am so blessed to have her to talk with each month and keep me on track. She is the best!

Hi all! Hope everyone is having a great week! Just wanted to share photos of what I do once a month. My monthly Tysaburi infusion for my MS. My two hours a month hooked up to an IV fighting this darn MS. My nurse Mary is such an amazing lady who makes everyone feel so much better! She rocks! I bring her a coffee every time just so she knows how much I appreciate all she does for those fighting MS. So thanks Mary for everything!

When I was first diagnosed with MS, the doctor I was seeing at the time told me I had MS, then handed me about 5 binders full of different treatment options and told me to read them over and at my next appointment tell him which one I decided on. I remember walking out of his office thinking, ” Oh yea right, like I am suppose to know which one to pick?!?! This isn’t a candy flavor, this is my health!” I then went home and read through a few of them and all I could read was…WHEELCHAIR or DISABLED. Anything else, I have no clue. I remember thinking,” Holy crap, I have to take this medicine to hopefully not be put in a wheelchair or be disabled one day. How the heck am I suppose to decide which one is best?” I then went to my next appointment and asked the doctor, ” What if I was your daughter, which one would you suggest given all that is going on and my life?” That was the first time this doctor seemed human to me when he answered which one he though would be best. Needless to say, I did not stay with this doctor. He did not fit my health care needs. (That’s a whole other topic.)

So with my story said on how I had to decide on treatment, which has changed in the seven years I have had MS. But I wanted to give those newly diagnosed or those needed to switch treatment some pointers. Here they are…

Base your decisions on the following:

– Is it proven to be most effective for your MS?

– Does it fit into your life and how your daily living is?

– What are the side effects and can you handle those?

– What is the long term effects good and bad of the treatment?

-Does your insurance cover it?

– When can you start the treatment and how often is it taken?

-Any risks before and after starting this treatment?

-If you are planning on becoming pregnant, will this treatment be okay?

– Ask everything and anything you can think of that you need to know about this treatment and research til you go crazy!

These are just a few of what I would suggest for you. But remember, just because you decide on one treatment doesn’t mean it has to be your end all treatment. Always know that you can try one, if it doesn’t work, try another.

Find the treatment that is best for YOU.

There are so many forms out there now, one may work for you and not for the next person.

Only worry about yourself and what is best for you when it comes to your treatment choice.

I started on Avonex for 4 years and have not been on Tysaburi for going on 3 years. It was scary to switch but I trust in God and my doctor for leading me to the right treatment for me. And I hope you do the same too!

Happy New Year to you!!

I want to thank you all for visiting my site and for making my dream to help others with my story of MS start to come alive. This is just the start of what I hope something great to do with my journey with MS and hope to continue to flourish in this. Thanks to all your love and support I believe this is possible.

To start off the New Year, I wanted to write about having a positive attitude. Do you? If not, I encourage you to change your attitude to a positive one. I promise you it will change your life for the better. Attitude is everything and once you proceed with positiveness and joy, many amazing things are to follow. This may be the best change you have made in your life once you do this. I guarantee it!

Positive attitude = positive results.

If you struggle in this area, there are many book in the Self Help section for you to read. There are self help websites and support groups. The support is endless, you just have to want it. And I sure hope you will engage in this new attitude as soon as you can!

Again, Happy New Year! I wish you health, happiness, love, and peace in 2014!

This is an article from Ann Romney. Read it here… –http://bit.ly/17BpQkN

Together we can raise awareness!

Being an ambassador for the Multiple Sclerosis Foundation, I learned the importance of getting base line tests done in multiple areas so doctors have an understanding of where you are coming from if something may arise. I remember thinking, “ Well this makes great sense! Why have I not done this in the six years I have had MS?” So I am hoping my “Ah Ha” moment will do this same for you.

 

Base line tests to be done include:

 

• Vision
• Physical (meaning mobility and function)
• Psychological
• Cognition
• Pain

 

This is such a great thing to have done for any future needs. Hopefully this is not the case but why not be prepared? After all, being prepared and staying on top of your MS is a critical thing to do. It is a must to help avoid stress and annoyance at the time of all you want is to feel better. So call your doctor today and ask him if he/she feels this is a good thing to do and whom he/she refers for such testing. Do it for you and your health, you deserve it!

 

While I am mentioning staying on top of your health, I want to give some additional advice too. I have been currently having issues with my health insurance coverage of medication for my MS. I have dual coverage and I still was told my medication was not covered. As crazy and tiresome as this has been, it has taught me a valuable lesson. Check up on your insurance every so often to make sure everything is in tact. Don’t assume like I did for the past 8 months that things were taken care of, because they were not. It has caused so much stress when all I want is to get my treatment done and paid for like I had been the past two years before my girls were born. So stick with a plan and a routine of a “ Wellness Check” of your insurance and of your coverage. It will be worth it, trust me!

What is Your Story?

What is it that you want to do in this world? What do you want to do with your life? What do you want to see and conquer? Are you thinking about these questions?…

Well if so, I am encouraging you to look deep within yourself and look for the answers. Find what matters to you and what does not and go for it. We all have that inner flame to light, so light it and enjoy your adventure!

Start YOUR STORY now…it is going to be great!

xo