Saturday, April 18, 2009

Eating Healthier

I was in this cardiovascular program with my job, and was trying to eat better. I decided drinking soda was probably something I needed to give up. Also I decided I needed to stop eating things with aspartame. There is so much evidence that it can cause problems. I actually went almost 3 weeks without soda and caffeine. Definitely a record for me. I actually felt better. I was kind of suprised. Giving up soda wasn't as hard as I thought it would be. I have decided to stay away from aspartame as much as possible and to only drink soda once in awhile. I don't even miss it. Which was a complete shock to me. I figured it would be the hardest thing to do but it really wasn't.
I have cut down on the amount of caffeine I was consuming and have only had soda twice since after the 3 weeks without it. At first I quite drinking the normal diet coke and went the the stuff with Splenda in it. I felt better just switching but I realized i wasn't drinking enough water because I was just drinking Diet Coke with Splenda. This is when I decided to give up soda altogether.
I am only drinking coffee once in awhile. Only if it is a day off and only if I really want a coffee. Which isn't that often. Well it isn't as often as it use to be. lol.
I stopped buying the yogurt with Aspartame in it, and I am only getting the stuff without. I think it tastes better. The only reason I was getting the other yogurt was because it was fat free. I may be eating more fat but I am eating less chemicals.
I actually lost a couple pounds since giving up soda. Now if I could just lose 10 and be back to the weight I was before the steroids over the last year. Anyway I will start writing more now that I feel like it again. Later....

Friday, April 17, 2009

It's Been Awhile

I know I haven't written in awhile. I really just didn't feel like it. No other excuse. Lot's of things have been happening but I really wasn't in the mood to type. I am going to put up a short blog today and maybe I will write more tomorrow. I have to go to my 11th Tysabri infusion today so fun will be had by all. I need to start getting ready.

My husband, father, brother and friends, Jenseena, Whit and Josh did the MS walk this last weekend. Together the team raised over $3000 dollars. Not bad. My Father and Brother were here for the weekend, had lots of fun with them. They got here Friday afternoon. I am in a genetics study for MS so the doctors wanted my brother's blood and my father's blood. They got off the plane and then had to give blood at the clinic. Not the best way to start a vacation but they are helping me out. Saturday was the MS Walk. The walk finished around noon. We went to lunch and they home to rest. Went to dinner at our favorite restaurant, and then to the Jazz game. Sunday went to brunch for Easter and then drove around Salt Lake to show my Dad and brother around the city. They were leaving early in the morning so we just hung out at home the rest of the day. Well I am going to be late if I don't start getting ready.

Monday, December 22, 2008

End of the Year

I haven't written in awhile, been kind of busy with work and the holiday season. The doctors finally figured out what the cause of my side pain was. After I had every GI test known to man and they all came up negative, I spoke with my neurologist and he decided I should have a thoracic spine MRI. The results to that were not good. I have 2 lesions directly opposite of my belly button. My neurologist finally came to the conclusion the side pain is from those lesions. The pain hasn't gotten any better. It has actually gotten worse both of my sides hurt and I am in pain 24 hours a day 7 days a week. I pretty much block it out as much as I can. If I am busy at work or doing something fun this is the easiest times to ignore it. I have pretty much come to the conclusion that there is nothing I can do about it and this is what I have to live with.

I had my 7th Tysabri infusion 2 weeks ago, everything is going OK with it except every time I read the news there is another case of PML popping up. This does not make me feel any better about taking this drug. Overall it is working pretty well, I am less tired on the drug and the short term side effects of the drug are much better than Avonex. I have no desire to go back to Avonex. I have definitely had some setbacks though. Right now part of my right foot is numb and has been this way since right after my 6th Tysabri infusion. About 3 weeks ago the skin on my chest went numb. Luckily that only lasted a week. The doctors keep saying that now I am in the stage of the medicine that I should start seeing real results. I am trying to be optimistic but I am also a realist and I am not going to get my hopes up. I made an appointment with my neurologist at the end of January so we can discuss the fact that more PML cases keep showing up. I really don't plan on him saying anything different than last time but I figure if I make it known this is a bigger concern that maybe I will get better answers.

Christmas is just around the corner and I am really looking forward to it. Hopefully the year 2009 will bring some good news with the state of my MS. I am trying to stay optimistic.

Saturday, October 11, 2008

MS Anniversary, and finally the Pill-Cam Test

Yesterday was my one year anniversary of being diagnosed with MS. Nothing really significant. October 9th was a good day though. After 8 months of side pain and dealing with trying to get the Pill-Cam test approved I finally get to have the test. My secondary insurance is going to cover it. My primary insurance still won't even after 3 different doctors had requested for a total of 5 times. It absolutely amazing to me that an insurance company would deny a test 5 times when 3 doctors had requested it. Anyone reading this who has a choice between Altius or some other insurance company do not choose Altius. They are the worse insurance company I have ever had to deal with. Their whole stance on this test is it is investigational therefore they should not have to pay for it. Every test I have ever had has been investigational, but what do I know, I am not a medical director determining people's fate based on very little information.

Anyway I am finally having this test after 8 months of pain. Last week the pain moved to my left side also, I must be getting better lol. I mean pain spreading has to be a good sign. Ok I am being sarcastic. The test is happening Monday I have to work but it was the only day they could do it or I would have to wait another 2 weeks. I am not waiting any longer. I spoke to my boss and he is going to let me leave to go have the procedure done. I have to swallow the pill and then hooked up with electrodes. I have to wear some sort of belt, but I don't care I want this test done so I can finally know if this is a GI problem or something else, in which case I can go to another doctor. My GI doctor still believes it is a GI problem so hopefully they will find something so this pain will go away. Well I am tired of writing.

Saturday, September 6, 2008

New Information

I went for my 4th Tysabri infusion yesterday and was talking to the nurse about my side pain. I was telling her it has been 7 months and no doctor could figure it out. There are 2 more tests that could shed some light on, one is the small bowel X-ray and the next is the pill-cam test. The nurse told me to do both of the tests but if still nothing was found it could be neuropathic pain. I had never heard of this before now. She said one of my lesions in my brain could be causing this, and there was a medicine I could try. I like my neurologist but he didn't even bring this up at anytime when I was telling him about this pain. It could still be a GI problem but at least its being narrowed down. Tuesday I go in for the X-ray test.

I think I was having a relapse this last weekend. I was telling the nurse what had happened over the last month and mentioned I felt nauseous all last weekend and I was dry heaving. She asked if this had occurred before, it had and that's when she mentioned maybe it was a relapse. I though you couldn't do anything if you are on Tysabri but you can still have steroid treatments. She said if it got any worse I could come in for one. I said no that's ok I was feeling better.

That was my exciting day yesterday. I will write more on Tuesday.

Thursday, September 4, 2008

Wow Its Late.....

It's almost 12:30am and I have to be up for work in less then 5 hours. I am having a really hard time sleeping tonight, which is weird since usually I fall asleep in front of the TV. My left foot feels very strange. Usually its relatively numb and I can barely feel it. Tonight especially my last 3 toes feel very different; I am not sure how to explain the feeling, it feels similar to nerve pain. Maybe it means I am going to get more feeling in my left foot. If that does happen then I would have to say this Tysabri is working pretty well. Now if only it would get rid of this side pain.

It has been 7 months to the day of this pain, nothing has really changed; no doctor can figure it out, all they can tell me is what it is not. At this point I just want my stupid insurance to pay for the test that 2 doctors have requested. I will be off work from Friday to Wednesday, hopefully I can get the doctors to schedule the next test I need to rule out some more problems and they will be closer to finding out why my side hurts.

I am sure a lot of you are wondering why I have let this drag on for so long; well when you have to deal with lots of incompetent medical personnel who only give you part of the test results it makes finding the actual problem take twice as long. Also if you have to go to different doctors to ask for the same test because your insurance company says you don't have the symptoms to warrant the test, this also takes more time. But I am not bitter I mean who doesn't like constant pain that doesn't go away. Ever! LOL. Well I am actually feeling tired, I will write more tomorrow.

Saturday, August 16, 2008


I got a letter from my doctor last week saying 2 more people have been diagnosed with PML as a result of taking Tysabri. This was a huge blow. I spoke to my doctor on Tuesday the day of my third Tysabri infusion. He told me he wanted me to take it for another 3 months and then make a decision. I really don't have any other options. Avonex wasn't working so he doesn't feel going back to the drug will be that beneficial. He told me 3 lesions developed while I was on Avonex, one lesion developed on my brain stem a very bad spot to have a lesion. I also had 3 relapses while taking the drug. I am not sure what I am going to do. I really don't have any options until more drugs are FDA approved. Going off all medicines is not an option either. I want to be able to walk in a year. My doctor says I have a very aggressive case of MS and I need to stay on medicine if I plan to walk in 2 years. Well this is depressing so I will write later.