MS & I

Wednesday, September 21, 2011

Swallow my pride...

So finally after being stared at and being asked if I have been drinking I have decided to join the M.S. physical therapy clinic at the University of Utah. This is a program designed just for M.S. patients. Before joining the program I needed to complete a series of tests. This is the first part of swallowing my pride. All the testing is done by U of U students who are about my age. What I wouldn’t do to just be able to switch places with them, to be in school with others my age and getting an education. The second part of swallowing my pride is that I am the youngest person EVER to join. So I go to P.T. with 60+ year olds and try to see the bright side of this whole experience even though it’s a little hard to swallow.

Third treatments a charm...

It is time for a good update that came about one month ago.. I started a treatment called Tysabri after my last MRI came back showing more lesions meaning the medication was not working. So it was on to the third treatment. A once a month 2 hour infusion of the medicine Tysabri. After six months of being on the treatment I was in for yet another MRI and blood tests. First my blood work came back looking great, seemed that everything had doubled! (Except for my vitamin D levels). Then the MRI report saying that nothing had really changed since my last MRI (that’s good) and that they currently see no active lesions (that’s good too). So this is the first time in my year and a half of having M.S. that I get to stay on a medication longer then 6 months. I look forward to seeing what this treatment can do for me and hope for the best that it can make me feel better.

Saturday, June 18, 2011

I thought it would be best for me to not only share my story when it comes to my struggles with M.S. but that this blog is therapeutic for me to put pen to paper and explain the emotional pain this dieses has caused me. I know that it is pathetic in a way that I still wake up in the middle of the night from a nightmare about dancing.



When you have a strong passion for something it is hard to break away. Your heart, mind, and soul are engulfed in this passion. To be so in love with something that your spirit is stongly attached to it. You don’t bother with other earthly things because you know there is much more to yourself then that. My brain couldn’t disconnect from music and my body had to react. Hours of free time were spent using dance as an emotional release.



Embarrassment is an emotional state experienced upon having a socially or professionally unacceptable act or condition witnessed by or revealed to others. This definition is perfectly said when is came to my first hints of this dieses. Dancing became a chore, it was an overwhelming fear, and my body was not willing to listen to what my brain was telling it to do. My head was telling me to quite but my heart and soul knew that I wasn’t one to quit. I tried; I begged and pleaded with my self to be able to accomplish what I set out to do.



I was very aware that others thought I was making a small thing in to much bigger than it needed to be, that I was “milking” a miniscule problem. Or that I was faking something that would grant me some kind of attention. This made the situation become unbearable and I became panic stricken. The fears of the unknown lead me to poor health, dramatic weight loss, constant fatigue and the loss of consciousness. Instead of hours dancing I slept, I cried, and searched for an explanation.



Trips to the doctor seemed useless. My complaints of symptoms fell on deaf ears. They tried telling me that I had asthma, depression, anxiety disorder, anemia etc… The tests included everything but the one thing I was in need of…an MRI. They say that you are your best doctor and I was sure that I had some type of brain tumor, but doctors shrugged it off and thought just like the others, that it was all in my head.



Time went on and as soon as I could I avoided dancing. I had to watch fellow dancers go on to dancing careers and make something of them self. I sat back and tried to dance behind closed doors, but the struggles persisted.



I thought that after being diagnosed I would feel a sense of relief. That there was something neurologicaly wrong with me, that it wasn’t my fault and that I just could not help the situation. But I still have a hard time forgiving my self and wake up from nightmares about something I used to find joy in. because of this I still look forward to the day that I can run jump and dance, and make up for those lost times. To try and redeem myself somehow.

Saturday, June 4, 2011

Tuesdays with Morrie...

I recently finished a phenomenal book titled Tuesdays with Morrie. The book is about a college professor who is diagnosed with ALS (Lou Gehrig’s dieses); a former student has created this relationship with his college professor and meets with him every Tuesday. After the student graduates and Morrie is diagnosed they continue their Tuesday conversations. ALS is a progressive, fatal, neurodegenerative disease caused by the degeneration of motor neurons. This is in the same family as MS.


The day I was told that my MRI looked like I had MS they had to do additional testing to make sure it wasn’t ALS. The main difference that I could see between ALS and MS is that with ALS I was going to die in a matter of time. I remember while going to get my chest x-rayed and a spinal tap, I cried the entire time, fearful of the fatal disease. While reading the book I couldn’t help but write some of my favorite quotes from a dying man who has a whole new out look on life.


“Accept what you are able to do and what you are not able to do. Accept the past as past, with out denying it or discarding it. Learn to forgive yourself to forgive others. Don’t assume that it is to late get involved.”


“Life is a series of pulls back and forth. You want to do one thing, but you are bound to something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted even when you know you should never take anything for granted.


“With out love, we are birds with broken wings.”


“We put our values in the wrong things. And it leads to very disillusioned lives.”


“No matter where you live what we human beings have is shortsightedness. We don’t see what we could be. We should be looking at our potential stretching ourselves into everything we can become.”


“By throwing yourself into emotions, by allowing your self to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, ‘All right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.’”


“As you grow, you learn more. If you stayed at twenty-two, you’d always be as ignorant as you were at twenty-two. Aging is not just decay, you know. It’s growth. Its more than the negative that you’re going to die, it’s also the positive that you understand you’re going to die, and that you live a better life because of it.”

Wednesday, May 4, 2011

Walk!!!


Left to right: my macu coworkers, Jeff & Martha Smith, Brad Sollis, Scott & Rocky Gramse, my dad sister & mom


















April 30th was the annual Walk for M.S. event. This was the first time I have ever walked or should I say “rolled” in the event. I was a bit disorganized when I found out about the walk and waited a bit to long to get the word out to family and fiends. Because of my dads new venture as a “Sucks Button” sales men we decided to do some advertisement for it because everyone needs to know that M.S. sucks! Ok so a ton of things suck so why not have a button to take it out on? I am so thankful for all the wonderful supporters I had and will never forget that love shown to me that day. We had a blast doing the walk and can’t wait till next year when we can get a bigger and better M.S. Sucks team!




Tuesday, April 26, 2011

Lucky...

In my family when we are happy for someone we always say lucky! But only in the Napoleon Dynamite voice of course. Well I am going to say “lucky” to myself. To begin I have to say I have one amazing family. My mom and dad treat me a little too good. They are so understanding of my new needs and don’t hesitate when I ask for help. I adore my brothers and sister now more than ever, they hold long conversations with me and give me endless advice that I use on a daily bases. My cousins, aunts and uncles because of them I am constantly surrounded by endless concern and support not to mention I look up to them, I am who I am today for doing so. With having so many people who love and care for me I can handle anything. The number 1 “lucky” in my life is my husband. I hate to put down all those husbands out there but I have to say that my man is as good as it gets. I think I have put Jeff through hell since the moment he met me but after being diagnosed I wouldn’t blame him if he just walked away. He put up with my disability walked by my side while I looked like an old with my walker, he pushed me in a wheel chair countless times even taking me shopping and helping me pick out clothes (ok he really picked all of them out, what can I say the guy has taste.) He helps me to walk and in the morning when walking is the hardest he carries me to the bathroom. I really could go on and on about all the wonderful things my husband does for me but I think that would be called a book. I am so proud of him and the person that he is, it makes me proud to say that he is mine.



Friday, April 1, 2011

23...


I celebrated my 23rd birthday this March, I was able to celebrate it with my family at the Cheesecake Factory (yummy!) It was so simple yet so wonderful to be able to spend time with those who matter most in my life. When the night ended realized just how lucky I am to have so many special people love me. I was fortunate enough to have 3 little celebrations, one with the boys, a girls night out with my mom and sister and to top it off dinner with my bestie Nessa. I am truly grateful to have people in my life who lift me up and keep me going, it is because of these people my health is going to only get better.
p.s. my dad is trying to flash "23" looks more like 22

Monday, March 7, 2011

Approved!!!

I was approved for Tysabri! I got the great news a few weeks ago, and why do you ask that I needed to get approved? Well of course insurance is a pain and they needed good proof that the other two medications didnt work on me because this medication is CRAZY $$$ and second reason being Tysabri increases the risk of progressive multifocal leukoencephalopathy (PML), a rare brain infection that usually causes death or severe disability. I had some blood work done about a month ago to check for a certain JC antibody that helps them to see if I do have a better chance of contraction PML. I got the letter two weeks ago and the results came back negative! So even though this is good it still doesnt mean that I can't contract PML. So the overall good news is that I no longer have to take a daily shot, and I just get an infusion just once a month!!! YEAH!!! Oh and this is as good as it gets with MS medication so I am truley thankful that I have this opportunity :) Wish me luck!!

Sunday, February 20, 2011

Walker...

Don't Ask
I Have MS

Note the white and pink jewls and the pink tennis balls in the photos above
Going off my medication while I wait to get on my new meds forced me to pull out my walker in case of a bad day. This reminded me that I never took any pictures of the work that I have done on it. I also decided to show off a cute shirt that my sister in-law made for me after telling her all the odd looks i get from people when they see me with a walker or in a wheel chair.

Tuesday, February 15, 2011

Whats up Doc?...

Went to the MS doctor last Thursday and got all my testing done for this new drug called Tysabri. Thankfully this is just a once a month deal and not a once a day shot! This is as good as it gets MS medication wise. I do have to say the good attitude at the doctors kinda went out the window when I was taken on a little tour of the infusion facilities. I was walking past the four small infusion rooms that seemed pack with people and old people if you don't mind me saying. Its as if they looked at me and were saying "join us". I know that the common age for being diagnosed is 20 to 40 but why do I feel like I am the youngest one with this thing? OK so I know that's going a little over board, but I must say it was a bit intimidating. Just trying to put a smile on my face one way or another. although I don't look forward to "joining them" I do look forward to this new medication and finding the laughter in all the many situations I find my self in.
"Laughter gives us distance. It allows us to step back from an event, deal with it and then move on." - Bob Newhart

Wednesday, February 9, 2011

Bad news bears...

That was the first think to come to mind when I received a phone call from my doctor and she said "I have bad news." My heat jumped to my throat not only because hearing bad new from a doctor is in fact bad, but because I was so very sure that I was doing so well.
My last visit with my MS doctor was in the beginning of January and as with any routine check up I walked and showed my balance for her and I must say that I was rather pleased with my self. As a yearly precaution I was given an order for an MRI. Two weeks ago I received a basic brain scan and waited for the results. When a week went by I figured "no news is good news". Yesterday after having a no fun day in court for a fraud case. I received a call from the doctor letting me know that the MRI did not come back with the anticipated results. The lesions in my brain have multiplied, grown and are "active" (not to sure what that means yet). I replied with a peppy "ok!" and prepared for the break down. I know that is normal and this is all about ups and downs but I was really hoping for a break this time. So off the the hospital for more testing for a new drug they want me to try. The good news about this is that this medication is supposed to be the "best of the best". I can only hope for the best and not this get me down.

Monday, January 17, 2011

The Top 10 Worst and Best of 2010

Ringing in 2011!

Jeff and I were counting down the days until 2010 was over as we felt it was the most trying time of our marriage, but the we got to thinking how everything became a blessing in a way because we grew so much from these experiences.


Top 10 Worst

1. Being diagnosed with M.S.

2. No insurance

3. Jeff takes on two jobs and school

4. I never saw Jeff

5. I had to stop school

6. Depression

7. Pain

8. Medical bills

9. Feeling lazy and alone

10. No longer able to wear high heels


Top 10 Best

1. Learning from M.S.

2. We got great insurance

3. Medicine (love my meds!)

4. Two wonderful weeks in the hospital

5. I got Sally, my walker and had her bedazzled

6. Jeff’s hard work paid off and was accepted into PARAMEDIC SCHOOL!

7. Blessings

8. The relationship with loved ones grew

9. I love my job

10.G ot to go to Disneyland with the family (got to the front of all the lines!)

so you see in the end through all of our stuggles good came out of this and we are thankful for every bit of it. Ya so life sucks, but you got to get something out of it right?

Recap...

Yes I know that my post is way more than over due. Since my last post in June much has happened to me both physically and mentally. I know that I have gone into hiding somewhat these past 6 months and I apologize to those who have made an effort to see or talk to me and I have made no effort in return. My relapse in June really made a change in my life plans. I had to drop out of school and staying home with nothing to do or look forward to I fell into a deep depression. As this continued I was determined to get out of the house. At the end of June I went back to work for Mountain America Credit Union full time and I am loving my job, the people I work with, and the wonderful company that they are and how well they take care of me in every way. While working did help I found myself having to run to the bathroom to have a good cry about every half an hour. Finally Jeff was so concerned that he called the doctor to let them know of the tribulations that I had been going through. I was told by my doctor to stop using my M.S. medication immediately as it can cause severe depression and suicidal thoughts. I was then put on a daily injection of T cells and so far so good. The depression cloud has cleared and I am doing better than ever with my M.S. I want to thank everyone in my life who has been thinking of me and praying for me. I feel your prayers everyday and every way and I know the reason why I am doing so well is because of the friends and family that are surrounding me. Thank you…