Staying on a treatment is so important for your health. But I get it, we get sick of doing an injection day in day out, week after week, treatments monthly, or whatever your treatment routine may be. I remember being on Avonex and just wanting a break so I had a week that I was not sick feeling like I got hit by a truck. Trust me I get this feeling of just wanting to give up. But I encourage you to not do so. If you really feel you need a break take a small one, then get right back on the horse again. Your deserve to do this for your health and for all those who love you.  We all need to give ourselves and body the best and most we can provide for it. You are doing great on whatever treatment you are on! You got this!

“Your Story with MS” is a idea of mine to share stories of others living with MS or know someone with MS. I wanted to get different views on how this disease effects so many people. I have had my husband and brother write blog entries and thought to expand this to many more!

I had the pleasure of meeting Ariana through the MSF Ambassador program. She and I have become great friends through text and facebook. She is one amazing gal, who I am so blessed to have met. Thank you Ariana for taking the time to be my first entry of “Your Story of MS!”

My Story With MS.

By: Ariana Deming

This is my story, Thank You, Marci Viland for asking me to write this for your website!

I’ve been living with daily headaches since I was 9 years old, that is when all this started and since then, I do not remember a day without pain. At first the headaches were only seasonal and then they became every day. I went to see my regular doctor, she put me on medicine, and I had so much of it that I ended up getting rebound headaches. Rebound headaches are headaches from being over medicated. November of 2007 I went to the ENT doctor, he said it was my sinuses, so I had sinus surgery. That didn’t help with anything. So the next step was to see a neurologist.

I went to the neurologist for the first time in 2008, he was an adult neurologist so he didn’t know how to treat me; I was only 15, I was still considered a kid. He ordered an MRI and I had many white spots on my brain, also known as lesions. He scheduled an emergency appointment for me at DuPont Children’s Hospital in Delaware to see the headache specialist on Monday, April 28th, 2008. Before I went down to DuPont, I had a spinal tap on Thursday, April 24th, 2008. A spinal tap or lumbar puncture is where they stick a needle in your lower back and draw spinal fluid out. On Sunday, April 27th, 2008 my mom, dad and myself traveled to Delaware. Even though I had an appointment the next day, I wasn’t even in DuPont for a few hours and I ended up at the ER. I didn’t realize that going to the ER that night was going to be a life changing event for so many different reasons. On Friday, May 2nd, 2008, I had my second spinal tap and then on Thursday, May 8th, 2008, I had my third. The doctors couldn’t figure out what was going on with me. I had more testing than I can remember. I have never experienced so much pain in my life.

I was in the hospital for a month, and one night I prayed to God, I said “God please help me. I can’t do this by myself. I need you, now more than ever, please come into my life.” I knew from that day on that God is always with me. God will help me through anything. If it wasn’t for my faith, I would not be able to handle this as strongly as I do. ?? After having 19 IV’s and going through so much, we were finally leaving the hospital!

On Thursday, June 12th, 2008, we went to an MS center in Buffalo, NY at 15 years old, I was diagnosed with MS. I had no idea what it was, I never heard of it. I knew I was going to let MS change me, but I was going to let it change me for the better! ???? There are times I say why me? Why now? But then I also say why not me? I have had MS for almost 6 years. Since being diagnosed, I have been on 6 different treatments. I could be mad at the world for everything I have been through, but that is the complete opposite. What I go through, I have so much strength, and so much love and I’m here to help people. I want to inspire people. I want someone to look at me and say, “because of you, I didn’t give up”! I want people to learn from me, that even when you are faced with a challenge no matter what it is, no matter how difficult it is, it is how you handle the storm that makes you who you are!

God didn’t give me strength to fight these battles, He is my strength! When I thought I could no longer go on. I DID NOT GIVE UP. Just recently, November 25th, 2013 (4 days before my 21st birthday), I had my first MRI since starting my new medication that I have been on since August…it was the best appointment that I have ever had! Even though I will have MS forever, I have not had any MS problems since the end of September (which is new for me because everyday something old or something new would be happing) I am in remission!!! I couldn’t be happier and I cannot thank God enough! One day, doctors will be able to find something for my headaches, but right now, I am just thrilled about my MS!

My advice is this: Never Give Up! Stay positive! Have faith that things will get better. Talk to others when you are having a difficult time handling things, or even when things aren’t so difficult, even if they may not understand what you are going through at least they can give you love and support! Share your story, you never know who it can inspire!

She has some amazing words, don’t you agree? Thanks for sharing Ariana! XO

Momentum Magazine is put out by The National MS Society. It is another great resource for you to have. You can sign up for copies at either www.momentumonlinemagazine.com or call 1-800-344-4867

Here are some great At Home Yoga Tips for you. Yoga is such a great exercise for everyone, especially those needing a low impact workout.

It is from Xen Strength website. She is awesome! Check it out!

www.zenstrength.com

5 Tips for Practicing Yoga at Home

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!