Great News!

I have such good news to share with all of you! I had my MRI yesterday and had great results. My MRI showed no new lesions!!!!! That means I am doing great with my treatments! He said that my MRI look incredible! YIPEE!!!!! I am such excited that the new treatment is working and keeping me on track. I want to thank everyone for their support! It means the world to me! I am just so blessed to have great things happen and to be able to have everyone in my life too. Hugs!!!

Quote

God specializes in surprise endings.

Reflection

This Wednesday will be my fourth MRI since I have been diagnosed. I am so anxiously awaiting this appointment. I am hoping to see nothing new on the MRI. I am hoping to hear, you are doing good, keep it up. I am hoping to hear, keep on the Tysaburi and life will go on. As the appointment approaches, I can't help but to reflect on how the past four years have been. I know I have a positive attitude and am a fighter, but to be honest, the past four years have been hell with my MS. I cry about how it was, now realizing it all once it was over. Now doing this new medicine that does not make me like the Avonex did, is such a blessing. For four years, every single week, EVERY SINGLE WEEK, I was sick for two days if not more. I took my shot in the leg or arm every Sunday. I knew that after I took the shot, I had about three hours before I felt like a semi- truck hit me and then ran me back over again and again. Or it felt like someone took a baseball bat and just hit me over and over again. It was awful. I tried all the medications I could to get over the "hump" like the doctors called it but they either made me more sick or did nothing at all. It was almost an out of body experience that I could just not wait for it to be over. The pain would wake you up at night so sleep was not always the answer. It was miserable but it was the only thing I knew what to do and just did it. I would look at others and always think, if you only knew what I have to go through each and every week, your small problem would be nothing. No one could possibly understand how it felt, unless Avonex reacted to them the same way. Some MS patients felt like this others were able to get through these side effects. I was not a lucky one and am just so lucky for the new drug now. I do not want to sound like a complainer with all this. It is just a good feeling to finally really tell everyone how it was. I know I would say it is all good but it wasn't after four years of having to do this. I did not have it in me anymore to keep this going. I would panic and think this is not how I want to live for the rest of my life. So when I had three relapses in a row, one too many I know, when I was told it's time to do something else for you have progressed, I was actually relieved. How horrible is that? I had to progress in order to get a new drug. As crappy as that is, I am forever greatful for new and better medication. So going in to my MRI appointment, the results just have to be good! I do not ever want to have to go through the past four years again. BUT, if I have to, I WILL! My life is too amazing not to! The fight will go on regardless. The fight will ALWAYS go on:)

Car Magnets

I came across this website in an MS magazine and thought I would pass it along. It contains those ribbon magnets that you see on people's cars. I have never seen an MS one but would love to! So I thought to pass this along and we can bring more awareness to others by little things like this.

www.msmagnet.org

My Idea

So my idea of one day getting a optic nerve transplant seems like a good idea today more than ever. One day this will be a procedure, well at least I hope it will be. I know it may sound way more difficult than I am hoping but it would be nice. With that said, today I had my big eye exam appointment. I received good news and not so good news. Good news first. Right now my eyes are stable. That is always good to hear that you are good right now. Bad news. I have more permanent damage in my left eye and permanent damage now in my right eye. I can't say that I am shocked because I had three relapses with optic neuritis in December/January. So that really was not a surprise but yet it still is a kicker when you hear the words "permanent damage." Last I knew, the word permanent means forever. Damn it. But what can I do besides what I am doing. Hopefully this new treatment decision will help prevents less damage from happening, not just in my eyes but all over my body. I did ask if I could go blind, and he said worst case scenario. I like that answer but crap that is still scary too! I better really start enjoying that sensory and not take advantage of being able to see! So all of you please do too! So, next appointment is my MRI next week. I look forward and dread that appointment all at the same time. Fingers crossed and pray, pray, pray!!

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" Go confidently in the direction of your dreams. Live the life you have imagined." - Henry David Thoreau

Someone Always has it Worse

At my treatment on Monday I sat with two other women getting an treatment infusion as well. As I sat there reading my book I overheard the two women talk about their disability checks, their insurance, and so forth. These two women have known each other from getting treatment done at the same time. I would say one woman was in her 50's and the other in her 30's. I could not help but listen to their conversations and think, holy crap! Will I one day have to worry about this or be in their position? The older woman could not walk without her walker and was unable to work any longer. The other woman had a drop leg, or at least it seemed like it and was having other issues as well. I sit there, and panic. The thoughts rush through my head of all sorts of thoughts that pertain to all they are saying. And to them, this was just conversation and probably comfort that someone else is going through this as well. Another woman I have had treatment with is in a wheelchair that supports her neck. She is always smiling and in good spirits. Another woman has had two different cancers and MS, and still has a great, whatever attitude. With all this said about the woman I have come to know in the past six months, I want to say how proud I am of each one of them. I am proud they are taking action with this new treatment and not giving up. I think if they can do this, so can I! As scary as it is to see and hear all this, I have to remember how lucky I am to be in the health besides the MS that I am in. I am reminded how life can change in an instant, and that things could be a lot worse. Someone ALWAYS has it worse than we do. We just loose sight of that sometimes. Don't let that happen to you. Remember that your life is good and enjoy it. I get a constant monthly reminder that others are fighting this disease in their own "health" way, some worse some better. Either way, as hard as it is for me to see and hear all the negative and bad things this disease can do, I will always give MS the biggest fight I have in me. I have to! Life is too good not to!

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Attitude defies limitation and exceeds expectation.

Fatigue

I know I have written about fatigue before, but I had to share this explanation of fatigue that could not be more dead on. 


"I am exhausted to my very core. The kind of fatigue that comes with a chronic illness is hard to describe if you have never experienced it.  It's not about being sleepy or sluggish.  It's not the kind of fatigue you feel if you've missed out on one good night sleep or had a particularly harrowing day.  It's not the afternoon slump that can be relieved by a cup of java. It's an all over heaviness that makes it difficult to move; it is a fogginess that drapes itself over you and prevents your from functioning normally; it's a complete and total inability to fight sleep. It is debilitating and often the most troubling symptom of MS. It is turning out to be my biggest foe." - Written by Ann Pietrangelo in her book No More Specs


Ann could not have said this any better. I have always wished I could explain how the fatigue with MS feels and never knew how. Well, she did it perfectly! This exact feeling happens all too often and with this heat, it has been happening more and more. Thank goodness it is suppose to cool down a bit, at least get rid of the humidity! Haha! Like we can control the weather, I wish! Just thought I would share this explanation of fatigue with all of you.

Resources

For those who have been diagnosed with MS and those who have loved ones with MS: there are so many resources out there for help with MS. The sites that have been helpful to me are the following.

MSActive Source

National MS Society

MS Maze blog

No More Specs book written by Ann Pietrangelo

Care2.com, search for MS articles

Momentum Magazine

I am sure I am forgetting some more and will add to the list when they come to me. Resources are out there to help. Sometimes it takes a bit of digging around the internet and bookstores, but they are there. I hope yo get this blog more exposure and out there to be on a resource list one day, so tell all!! Thanks!! And I hope those sites help you!