UW MS Clinic

I met my new doctor at the MS Clinic last week and saw her again yesterday. She showed me my MRI which I had never seen and clarified some things regarding my lesions. My previous doctor told me that I had no lesions on my brain...well, my MRI shows differently. I actually DO have lesions on my brain. They are small and since I am not having any symptoms directly related to brain function, my doctor is not too concerned with them at this point. She would like to do a full brain and spine MRI to get more information but since I am uninsured we are going to wait. The full MRI would cost around $5000.
I met with her yesterday to discuss treatment options. We decided on Rebif injections. These injections can cost over $20,000 a year without insurance. My doctor put me in contact with MS Lifelines and they were able to get me a years worth of free injections....PHEW! I already have over $5000 in medical bills just since November with more coming from my clinic visits. The injections are sort of a necessary evil that I am not looking forward to. I have to inject myself three times a week. Most people get flu-like symptoms after each injection that can last up to eight hours. The pain in my legs I can deal with. The bladder control issues I can deal with. What I CANNOT deal with is nausea and headaches...which are two of the side effects of Rebif injections. My doctor says that once my body gets used to the chemicals, the side effects may subside. I should be receiving my first round of injections by mail withing the next few weeks and Rebif will be sending a person out to our house to teach us how to do the injections.
My new doctor really drove home how smokers with MS are generally worse than non-smokers. My plan to quit was dependent upon when I started my injections. If I started my injections this week, I was going to quit smoking in about a month after I got accustomed to the stress of the injections. If I didn't start my injections this week, I was going to quit smoking now. Well, I've set my quit date for the 30th of this month and started taking Welbutrin (which helps me quit) yesterday.
I have a lot going on and prayers are always appreciated...for me and Scott. We are going to have so much to adjust to over the next few months. I am the luckiest girl in the world to have such an amazing man in my life. I don't know how I would be coping with all of this without him.

Walk MS

Today, Scott, Laura and I did the Walk for MS in Seattle. It was a four mile course that started at the Husky Stadium, went to Gas Works park along the Burke-Gilman trail and then back to the stadium. Scott's mom and brother and his brother's friend came up from Oregon to walk with us. When Scott first told me that his family was coming up to support me/us I was a little upset...even a little mad. I didn't want them to see just how weak I am and to be concerned for Scott's future with me. So many people assume that I am going to be a cripple by the time I am 40 and the last people that I want to see me in a weakened state is my future in-laws. I ended up feeling honored that they drove all the way up here to walk with a girl who they barely know to try and learn more about this disease that I am stuck with. I felt supported in a way that I had never experienced.

Today was a real test in my endurance and strength. All week my legs have been weak and I was a little nervous about the walk today. I managed to make it two miles from the stadium to the park (barely). Once we arrived at the park we found out that there was a shuttle taking people back to the stadium. Laura and I opted for the shuttle and the others walked back. This was the first time that I actually set out to walk more than a couple blocks. It was tough. Adjusting to my limitations is mostly a struggle of pride. I am a strong willed, stubborn chick. When I started to get tired, Scott offered his arm for me to lean on and we walked side by side, no one the wiser that I was using him instead of a cane.

Having MS means learning my limitations one day at a time. Scott reminds me everyday that the nice things he does for me is because he loves me and not because I have MS. I am the luckiest girl in the world to have such an amazing partner in my life who is here to support me no matter what life brings.

Me, Scott, Laura
GO TEAM BLITZ!



Scott and his mom Karen



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Thank you to everyone who donated money to help me reach my fund raising goals. Donations are being accepted until May 14th just in case you would like to donate to help fund research so that maybe one day we will have a cure for this mysterious disease. Just because I acheived my goal of $250 doesn't mean that you shouldn't donate ;)

MS Clinic at the UW FINALLY!

I got my appointment at the University of Washington MS Clinic finally! I go on April 12th and hopefully find out what my treatment options are and when we can get started. I've been excited to get started on my treatments for several reasons but the main one is so that I can quit smoking. Having MS means that I need to limit my stress as stress exacerbates symptoms. Quitting smoking is going to be stressful no matter how I do it. Starting treatments is also going to be stressful. I need to plan my stresses and keep them manageable so once I start treatments and get used to them, I can quit smoking!!
In other news, I am now living in Tacoma with Scott and our combined pack of seven dogs. Things are falling into place....and life is pretty darn good.

Me and two of the new kids, Rufus and Bruno


The rest of the crew