Jen's MS blog

Eating Healthier

2009-04-18T10:41:00.002-06:00

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....

It's Been Awhile

2009-04-17T09:38:00.002-06:00

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.

End of the Year

2008-12-22T17:03:00.003-07:00

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.

MS Anniversary, and finally the Pill-Cam Test

2008-10-11T10:06:00.003-06:00

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.

New Information

2008-09-06T10:47:00.002-06:00

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.

Wow Its Late.....

2008-09-04T00:22:00.007-06:00

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.

Tysabri

2008-08-16T12:10:00.002-06:00

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.

What to Do Now

2008-07-15T00:10:00.004-06:00

Right now it is after midnight and I am sitting at my computer typing this. I tried to sleep but I am in way too much pain. On Friday I had another procedure to see what could be causing this pain, ever since I have been in even more pain. My right side hurts worse then ever. Hopefully the doctor will call me tomorrow and tell me what the problem is.

I had my second Tysabri infusion last Monday. Again it went fine. I got a really bad headache afterwards but other than that I feel fine. Also I think it is doing what it is suppose to. I feel better with the MS symptoms. My foot hasn't been going numb as much.

Right now it is my side pain. I just want this pain gone!!!! I am going to try to go to sleep again.

The Medical Nightmare That is My Life!

2008-06-12T10:22:00.003-06:00

Alright to explain the title of my blog: I had my first infusion of Tysabri last Wednesday and everything went fine. The next day is when everything went awry. I had an appointment with the general surgeon to discuss my right side pain and the possibility of exploratory surgery and/or removing my appendix. I went to the appointment and the surgeon is telling me he looked over my colonoscopy results and said the most likely source of my pain were the ulcers in my intestines, and the course of Entocort should have taken care of it. I was confused because I was not told about the ulcers or had been put on the Entocort by the GI specialist. I asked what he was talking about. He shown me the report. I told him I was not told about this. He said I should go talk to the GI center. He gave me a copy of the report. I left and went straight up to the GI center.

I get there and tell them I need to know what's going on since I had a general surgeon telling me results from the colonoscopy that I had never been told about. My doctor's medical assistant said she was on vacation and the other medical assistant gave me the results. I stated the only thing she told me was stop taking the Aleve and go back to my family doctor because I don't have a GI problem. She said nothing about taking this drug Entocort. The MA proceeds to tell me I should take the Entocort which was a steroid. Now I am not suppose to be taking steroids while being on Tysabri. This could cause a bad reaction. The MA gives me samples of the drug to take for 2 weeks. She also called the pharmacy to see what the interaction would be with the Tysabri. The pharmacist really didn't know for sure, but said it could cause problems if I was on it for a long period of time. Both drugs reduce the ability for the immune system to work. I would have to speak to my neurologist first to see if I could even take it.
I left and called my neurologist. After calling and leaving a message several times I finally said this isn't quite and emergency but it is really important; I finally got through to my doctor. He told me he only wanted me to take the drug for 7 days and then touch base with him and he would decide whether or not I could take it longer or if a different drug would be better.
One of the side effects of the Entocort is a respiratory infection.

I called everyone back on Monday to ask about that. I left two messages with the MA of the GI center, and left a message with my neurologist. I did not get a call back from either one until the next day. When I spoke to the MA at the GI center she told me the doctor had gone over my tests again and thought I could benefit from another test where I swallowed a camera so they could see more of my small intestines. I was asking in depth questions and she finally wasn't able to answer one of them so she told me quote"I don't want you to think I don't know anything, but these questions are relatively complicated and the doctor would be better at answering them.

She scheduled me an appointment for today. I went to the appointment and spoke to the doctor and he said I would need to be on the Entocort for 8 weeks, but he doesn't believe these ulcers are causing the pain I am in and he would like me to do the camera test. I told him my neurologist said I could only take the steroid for 7 days. The GI doctor gave me another drug to try and told me he would call my neurologist to discuss the issue.

Finally the doctors are trying to do something. I want this pain gone I am so tired of it!

On Thursday as all this crap is going on with the GI doctor, I also find out my insurance has denied my prescription of Provigil because the FDA hasn't approved it for fatigue in MS patients. This is ridiculous that a insurance company gets to dictate what is the right treatment is for me. Now I have a secondary insurance but I am not in the system so I couldn't get me prescription filled until Saturday. I only had 1 pill left at the time. Now I had started this process over 3 weeks ago and had been told by the PA in my neurologists office that they had sent everything in 2 weeks ago, but the insurance company said they hadn't received anything until that week. Someone is obviously lying since each group is saying something different.

All I can say is I hate insurance companies especially Altius. Everything I have tried to do has been a pain. They want a preauthorization for everything. I can't even get my antidepressant without a preauthorization, because there are cheaper drugs out there. Every drug they feel is equivalent I have tried, and they either don't work or have stopped working for me. I know this entry is long and some people have probably stopped reading but I had to vent about everything. I feel better now.

Finally get to start Tysabri!

2008-05-27T19:14:00.002-06:00

I got my results back from the colonoscopy and it didn't really show anything. They told me to stop taking the Aleve I was taking for the Avonex symptoms because they could not find anything else that could be causing the problem. I went to my neurologist today and he finally said I could start Tysabri next week. Finally no more Avonex. I am so happy. He believes the right side pain is not MS related. My neurologist even called my GI doctor personally to make sure there were no other issues. My GI doctor and my neurologist went to medical school together, so they are old friends. He told me to talk to the general surgeon again and see if he can do anymore tests. Who knows maybe with being on Tysabri the pain will go away. It would be great if it did. Nothing else really going on. I am hoping this pain will go away eventually, I am so tired of having pain.

Still Having Right Side Pain

2008-05-19T15:14:00.003-06:00

I made it through the colonoscopy. The worse part of the whole thing was not being able to eat for 36 hours straight. Sunday I got up and only had the clear liquids oh and green jello. I was barely able to stay awake. I slept most of the day because I had no energy from not being able to eat. 7 pm is when the "fun" started. I drank the oral saline and without being too graphic was in the bathroom until 12:30 pm that night. I had to get up at 6 am to drink more of the oral saline liquid, and then wasn't able to have anything not even water after 7 am. The procedure was at 11am I had to have an IV for the sedative. The first nurse who tried to put it in must have been having a bad day, or just doesn't know how to do a IV without causing immense pain, because she tried to put it in my hand, but all she managed to do was leave a huge bruise on my hand and I almost passed out. They had to put me on oxygen because of it. I hadn't eaten and I was pretty weak, causing low blood pressure. I have relatively low blood pressure anyway so without food it was even lower. Then one of the other nurses said we will get Lucinda to do it she has more experience with putting IV's in. I wish they would always use the person with the most experience when they want to put an IV in me, or take blood or anything that involves a needle. I swear I always end up with the person that has problems with the ability to use needles.

A great example of this would be when I went in for a blood test for another job here in Utah. It was obviously this women's first day drawing blood, because she told me she couldn't find a vein in my right arm. Now anyone who knows me and has seen my arms whether a medical person or not would never believe she couldn't find a vein. You can see veins just by looking at my arm. She proceeded to move to my left arm. Well she found a vein but she obviously needed glasses or something, because she puts the needle in and proceeds to move it back and forth. Anyone who has had blood taken knows if the needle moves while in your arm more pain follows. I almost told her to stop and go get someone else, but I figured she couldn't cause me much more pain then she already did so I let her finish. Within 5 minutes of leaving the facility I had a bruise the size of a golf ball on my arm, by the time I got back to work it was the size of a baseball. I ended up calling the facility later and logging a complaint. Sometimes I wonder where people get their experience. But I digress.

Anyway back to the procedure, after getting the IV put in by the experienced nurse I was rolled into the procedure room. I really don't remember the procedure at all; they rolled me into the procedure room and the doctor came over to talk to me and to ask if I had any questions, I said no and then they told me to roll over on my left side, next thing I remember was waking up in recovery room. I stayed there for about another half hour and then was released. Heath and I went to IHOP after that, I finished every morsel of food I was so hungry. We went home and I laid on the couch and slept the rest of the day. Right now I am trying to get the results a week later. The pain got really bad yesterday; I barely slept on Saturday night. I couldn't even fall asleep until around 5am, and I woke up about 9:30am. I slept ok last night but I am still in a lot of pain. Basically I am waiting until they call me back. I hope it is today. I am going to go now, I want to lay down I am not feeling very well.

Right Side Pain and Preparation For a Colonoscopy

2008-05-10T18:58:00.002-06:00

Monday I will be a having a colonoscopy because I have had right side pain since the beginning of March. I have had 2 CT scans one with contrast and one without both showed nothing wrong. I also had an ultrasound on my reproductive organs which also showed no problems. Hopefully with this procedure they will find out what is wrong. Tomorrow all I get to have is clear liquids. I have to have this right side pain problem solved before they will let me start the Tysabri. Hopefully I will be able to start the Tysabri at the beginning of June; the Avonex is still causing me lots of side effects such as fever, chills and tiredness. Nothing else really of interest. I will write again later after the procedure on Monday.

The New Job and of Course the MS!

2008-04-24T08:07:00.003-06:00

Well its been awhile since I have written, lots of stuff going on with my new job and of course the MS. I will start with the new job first since that is good news. I just got done working a 6 day stint at twelve hours a day;It was difficult but I made it all the way through. I really like my new job, there is more chemistry experiments involved with it compared to my last job. There was really only 3 types of equipment I used at my last job, where at this job there is more like 40 types. I have only gotten to work on about 12 I will be training for the next 6 months and then I get a four dollar raise, can't beat that. I am going to really enjoy this job because so much of it is lab work not just theory. The lab classes is what I succeeded in college, so I am doing really well. I have been training for 7 days and I am pretty much doing almost everything on my own, however I am still asking questions to make sure I am doing the procedure correctly.I know this will be my last job. I have no reason to leave, the benefits are great and so is the money. I do not want to go through anymore medical evaluations to get another job, I probably woud not pass. On to the MS.

Things have not been going as well as I would have liked. My last shot of Avonex was March 15 to be able to go onto the Tysabri. Ever since I went off the Avonex my headaches have come back and I am having more problems with my left foot going numb. I had all the consultations last week to be able to go on the Tysabri, now there is the issue of insurance. I have insurance with my old company still until April 30, and I am suppose to have insurance with my new company starting the day I was hired, but they can't give me any information until May, so I should have stayed on the Avonex and waited till everything was approved. On top of all that my doctor wants me to figure out what is going on with my right side pain and other issues having to do with my GI track before I go on the Tysabri. I have an appointment with a GI doctor next Thursday, so hopefully they will know soon. I had another shot of Avonex last night hopefully to help with my symptoms. It works it just isn't working as well as the doctors had hoped. He didn't want me off medicine for more than 4 weeks. I can already tell being off of it for this amount of time is causing problems. I definitely know that being off medicine is not a good thing. Its scary when you wake up and you can't feel a part of your body because it is so numb. I know this right side pain has nothing to do with the MS directly, but I do think it may be the cause of whatever is wrong with me. People reading this are probably wondering how I am working 12 hours with being in pain; well I am now so use to pain I ignore it and I try to forget about it. this seems to work until I sit down or get home. I wake up in the middle of the night a lot because I move wrong and the pain gets worse. I am tired a lot, but the Provigil got me through this 6 day stint. I swear it is like I am a normal person when I take it. I don't feel tired and I can do my job without being completely exhausted. Hopefully I will be able to start the first round of Tysabri during my 6 day week off May 16th through the 21st. All the insurance issues should be cleared up, and hopefully the GI issues will be resolved. Not much else is going on, I will give an update when everything has been resolved.

Heath Left and I Miss Him

2008-03-31T21:23:00.001-06:00

Heath left tonight for New York to visit his Father who isn't doing so well. I wanted to go with him but I was suppose to be working this week but that didn't happen. I called my new job but they haven't called me back, so I have tomorrow off tomorrow also. I am not sure what I am going to do with myself I would much rather be working then being at home. I am really excited to start my new job and begin making more money.
I already miss Heath. He keeps me grounded. He is so supportive and helpful. I don't mind being alone, I would just rather have him here.
My MRI is Wednesday, nothing new there. I have had some weird things happen the last couple of days. I woke up last night and my right arm was completely numb. I had to shake it for awhile before I could feel it again. It is the strangest feeling to not be able to feel a part of your body and it is just hanging there. I am pretty sure my arm went to sleep, but it is still the weirdest feeling.
Well nothing else really going on so I am going to say good night.

A New Chapter in My Life

2008-03-29T08:30:00.000-06:00

Yesterday was my last day at my first job in Utah. I guess because I was privy to confidential information I was suppose to leave as soon as I gave my notice. My boss did not know this was the policy; he found out yesterday I wasn't suppose to be there. He told me around 2:30pm that he had to let me go, but I would be paid for the entire 2 weeks. I was going to start my new job on April 7, I called my new supervisor and told him I could start sooner. Hopefully he will call me back on Monday and I can start Tuesday.

I spoke to my doctor two weeks ago about the problems I was having at the beginning of the month. I went to the emergency room twice in one week. Both times was for abdominal pain. The first time was on March 3, I thought I had an appendicitis. They did a CT scan with contrast and found nothing. I went home and the pain subsided for a bit. Next I went to the ER by ambulance. I woke up with a pain that felt like someone was shocking me with an electrical device. It was happening every 30 seconds to a minute. I tried to get some water but collapsed. Then my left foot went numb. Heath called the ambulance because I told him I didn't think I could walk. They did another CT scan without contrast, but still found nothing. Basically it was the MS and there was nothing they could do. I was going in for steroid treatments the next 2 days to hopefully relieve the symptoms.

After my first day of steroid treatments I asked for the information on the Tysabari. It is the drug that can do a lot for some MS patients. The only problem is that the first time they released it 3 people died. The only thing they know is if you have another disease that suppresses the immune system you can't take it. Also you can't take Avonex and Tysabri at the same time; you have to be off Avonex for a month before you can start taking the Tysabri IV infusions. Doing either one of these things can cause a very rare brain disease that can kill you in about 3 months called PML. To even take the medicine you have to sign a waiver. My doctor called me 2 weeks ago to discuss my new symptoms; I told him about the electrical shock symptoms and the abdominal pain, he said he wanted to discuss me going on Tysabri as soon as possible. Funny thing, that was the reason I wanted to talk to him. In February at my last doctor's appointment he said we would probably discuss me going on to Tysabri after another 3 months of Avonex. He told me to stop taking the Avonex immediately and to start on the preliminary tests.I had to get blood tests and have another MRI. It is scheduled for this coming Wednesday (on my brain). The doctors need new MRI's so they know what stage you are at with the MS before the Tysabri. I also have to have 2 appointments to go over all the side effects of the drug. I am suppose to go on March 21. I should be starting treatment in May.

When I first heard about this drug I did not want to take it. Who wants to go on a drug that the doctors don't know whether or not you could contract a life ending disease? I didn't. But after going to the ER twice in one week and the electrical shock symptoms, I changed my mind. I want to live a quality life. I do not want to end up like my Mother. Laying in a bed for 3 years depending on someone else to do anything. I know taking this drug I am taking a risk, but the way I am looking at it is I will not contract the disease and my quality of life will get better. I have spoken to a lot of MS patients that are on this drug and they say they feel better. Some people have gotten better at walking. The doctor said in some patients lesions have actually disappeared! In some other patients the lesions have shrank in size. I am hoping for the best.

I am really excited about my new job, I have doubled my pay, the benefits are amazing and they are going to work with me and the MS. I know this will be my last job. I will have no reason to leave, I mean they have a retirement program. There are so few company's that have that. I am not going to find anything better than this. I am also looking at my future; I am hoping for the best, but if something happens and I get worse, this company has benefits that will take care of me for the rest of my life. Long term disability, short term disability, and a 401K which if you contribute 2% they will contribute 8%. I plan to contribute as much as I can, build up a large reserve for if and when I am not able to work anymore. People say have a positive attitude, and I am, but I also have to be realistic. I am hoping for the best, and preparing for the worst. This job is a Godsend. With it, I can be prepared for whatever is up ahead, good or bad.

I am looking forward to starting a new chapter in my life. A new job, a new medicine and a new outlook on life in general.

I have finally accepted the fact that I have this disease. I really did go through the 5 stages of grief: Denial, I went through this before and right after I was diagnosed. I kept telling myself, I didn't have it. Even when I had so many of the "classic" MS symptoms. This had to be a mistake. I mean I had an MRI 5 years ago and they said I didn't have it. Then I moved onto anger. I was angry with so many things: I was angry I had the disease, I couldn't have children, I wasn't going to be able to work for the FBI, that my life had changed so much, all the symptoms I had, everything that had changed. This was very difficult, I felt so helpless and that I had no control over anything. I feel I probably was bargaining before the anger stage, I was sitting there in the doctor's office wishing for a brain tumor, because I felt that it was more treatable then MS. Now I know that doesn't make much sense, because people die of brain tumors all the time, but some people are cured, while if you get the diagnosis of MS you have it the rest of your life. I am still not sure which is better.

I know I went through the depression stage. For awhile I just didn't want to live anymore. Dying seemed like a better alternative because then I wouldn't have to deal with this disease. The depression stage and the anger stage went together. I went from very depressed to very angry for awhile. I just couldn't believe that God would give me the same disease my mother had, and died from. How could he make me and my family go through this again? How could he put my Dad in a position like that? First his wife had the disease and died from it, and then his only daughter gets the same diagnosis? I have now come to the realization that obviously God has a plan for me. I have no idea where it is going to lead me.

I now understand my mother and what she was dealing with. I feel much closer to her then I did when she was alive. I didn't feel my Mother and I had much in common when she was alive. I was so different from her. Now we have something in common, it might be a life altering disease, but not many daughters can say that.

I am finally in the acceptance stage of the grief process. I have accepted I have this disease. I can't change the fact I have it, and being angry about it will not accomplish anything, it only causes more problems. This is a new stage in my life and I am really excited about it. I may have a disease which as of now there is no cure; but I am not going to let it ruin my life. I am going to make the best of what I have and enjoy my life and deal with whatever comes my way.

A Pretty Good Day

2008-03-02T13:51:00.000-07:00

It is Sunday the day after my Avonex shot. I decided to take my Provigil to see how I would feel. Well I feel pretty good. I don't feel like sleeping and I feel pretty good. I would say this is the best I have felt on a Sunday since taking the Avonex. I went 2 days without Provigil, Friday I went without it because I was suppose to get an ultrasound and they had told me to have an empty stomach, by the time I got home it was too late to take it. Saturday I went to the MS Women's Conference and just forgot. I can definitely tell the difference from taking the Provigil and not taking it. I ended up falling asleep around 5 until 8pm. The Women's Conference was really fun and I learned some new things about the disease. I also met some new people which was nice.
One woman told me she was very angry for the first 6 months after she was diagnosed, that made me feel much better about the way I have been feeling. I have been a very angry person for the last 5 months doing things out of character and treating my husband unfairly. He has been so supportive through this whole ordeal and I have been very difficult to be around; moody, angry, and down right rude to him. I have been working on my anger issues and I am trying to be a more fun person to be around. It's going better, I realized being angry about things I can't change is not helping me, it just makes me more depressed and unhappy. I have this disease and there is nothing I can do about it, so there is no reason to be angry about it anymore. I need to make the best of what I have. I have a wonderful husband, good friends, and a family that is being really supportive. I have decided being angry with things I have no control over, only causes more problems. I don't want to be an angry person, I want to be a happy person. So my short term goal is to try to be a happier person.
Things are going pretty well, I am feeling a lot better with this fatigue drug, which is improving my mood tremendously which is helping me to be a happier person. I will write more later.

I Feel Amazing Today!

2008-02-16T11:51:00.001-07:00

I know I haven't written in a long time its been a really busy time. I feel so great today. I went to the doctor yesterday to go over my MRI results and talk about my condition. I told him I was having a lot of problems with fatigue and falling asleep at work. He gave me this drug called Provigil for the fatigue. I took one this morning and I feel so great. I feel more awake than I have in months. I don't feel tired at all. I did all the dishes took out the garbage, cleaned out the fridge, and cleaned the catbox. Usually on a Saturday I would be laying on the couch watching tv because I would be so tired from the week of work. I can't wait to try this tomorrow after the Avonex shot and see if I can stay awake all day. I haven't stayed awake all day after any of my Avonex shots. Man if I get the job where I have to wok 12 hour shifts this medicine will be a godsend. Well I am going to do something else now. I will write more later.

2007 Year in Review

2007-12-18T21:12:00.001-07:00

My husband did a year in review so I am going to do the same. The year started off like most Having a grand old time on New Year's day. Heath and I had gone to a party at a friend's and both of us probably had too much too drink but overall a pretty good New Year's. Well pretty much from that day everything got worse. Let me start with the the major event of 2007 my head injury. Long story short, I was walking around my SUV and I slipped on some ice and fell directly on my chin with my arms back. I ended up with a brain bleed, brain contusion, and a severe concussion. Well my health just got worse from there. I was having headaches dizzy spells, and vertigo all the time. I had an MRI in March which I later found out had lesions on it but my moronic neurologist didn't even look at the films himself, he just went by what the radiologist said. 10 months of going to a neurologist that kept saying" its migraines" even though it turned out to be MS.
In September I had enough of my neurologist and I went to my general doctor and told him I wanted a new referral to a neurologist and I wanted an new MRI which my neurologist would not give me even though I had asked several times. My general doctor had me scheduled for an MRI 2 days later and was already trying to find me a new doctor. The lesson that everyone should take from this is: If your doctor is not helping you and won't do what you ask get a new doctor. I wish I would have sooner. After the second MRI which had changed significantly I was told it was supicious of MS. I had to have a LP to confirm the diagnosis. My diagnosis was confirmed on October 10, 2007 I have MS. I am now on Avonex and trying to deal with my bad days.
All I can really say is this year pretty much sucked. I know that I am not being very positive but being diagnosed with a disease like MS is not fun. Yeah there were good things that happened during the year but overall I am going to say this wasn't a good year. I am hoping next year will be better. The year ends in 8 so already its better than ending in a 7. Seven is not a lucky number for me. Well that's all I am going to say for now about 2007.

A lot of Good days, One Bad Day and Reflecting on life

2007-12-08T22:25:00.000-07:00

Today was a very good day. Heath and I helped out 2 kids who don't have very much. At the bank there was an angel tree with children's names that needed things like clothes and shoes. What we got them was the only thing they would get for Christmas. We had a 7 year old girl and a 4 year old boy. We bought them clothes and toys. It felt so good to give gifts to children that had very little. It was so fun to pick little outfits out for the girl and the boy. We also got them some toys. Since I can't have children it was so fun to shop for a child.

Tonight was my company Christmas party. We went to Little America Restaurant in Salt Lake City. They had really good food. The President of my company came out, we all got gift cards to Walmart and then we each got to draw an envelope. I got another gift card to Home Depot. All and all a really good night.

I have been doing pretty well trying to have a better attitude. I am trying to stay as positive as possible. The week went really well up until Thursday. I have been feeling pretty good overall. Thursday came along and I had vertigo and felt nauseated all day long. Work and school were very difficult. I couldn't keep my eyes open in class because the room was spinning so bad. I actually ended up falling asleep because of the vertigo. I came back to work and just tried to make it through the rest of the day. I left at 4pm. When I got home I just went to sleep. I felt much better on Friday.

I had a lot of good days this week and only one bad one. In staying with my positive attitude, I am really lucky I only had one bad day this week. One bad day in 7 is not bad. Hopefully I won't have any bad days next week, but if I do I need to always look at the positive I only had one bad day not 7. I am going to try and write all the positive things that happen to me on a daily or weekly basis, because it will keep things in perspective for me. I am a very lucky person, I know there are people out there who have more bad days then good who have this disease. I am very lucky because my good days out number my bad days. Hopefully they always will, but if the tide turns I will still look at what was good about my bad days because having a positive attitude is the only way to approach this disease. Before I was diagnosed I had a very negative attitude about a lot of things, so one good thing about having this disease is I am learning to have a better attitude about everything.

Having MS has changed a lot of things in my life, I have to have a shot every week, I usually spend Sunday's sleeping most of the day, I have days where my head hurts all day long, but I am not going to let that keep me from doing the things I want to do in my life. Yes things in my life are different then they were a year ago but that's ok. I have a good life even with this disease. I have a wonderful, supportive husband, a great job, and friends and family who love and care about me. I definitely didn't want this disease, but I have it and I can't change that, so I am going to make the best of it by staying positive and living life to the fullest.

Trying To Have a Better Attitude

2007-12-03T16:50:00.000-07:00

This week I realized I was having a really bad attitude about everything. Heath and I went to Oregon and it didn't go the way I hoped. We got back and I went to my Doctor's appointment and he didn't really give me good news. He basically told me these are my good days with the headaches and all the other fun symptoms I am having. The lesions I have now have created a lot of damage and its permanent. This as good as I am going to feel. Well hearing that really didn't put me in a positive state of mind. So I wasn't having a positive attitude, which I need to have with this disease.

The Doctor also gave me another prescription to try. I haven't filled it yet because I am sick of dealing with side effects. I am going to fill it this weekend. He told me to take it a Friday or Saturday night so I don't have to go to work dealing with the side effects.

My goal this week is to stay positive and not look at the negative of everything like I did last week. The week is starting out well; I have to have my ingrown toenail removed, but I can find a positive in that it won't hurt anymore. Also because of the appointment I got to leave work at 3pm. They couldn't do it today because the instruments weren't sterilized so I got home at 4:20. It was nice to get home early. I was also able to get $38 out of my apartment complex because they overcharged us. There is several positive things about this week. Also my company Christmas party is on Saturday night which means a bonus and a free meal. Another positive thing to look forward to. That's it for now, off to soak my toe again....

Avonex Makes My Leg Hurt and Gabapentin makes me really Dizzy!

2007-11-15T18:16:00.000-07:00

This new medicine gabapentin is not working and only makes me tired and dizzy. So I am going to talk to the doctor tomorrow so I can get a different medicine. I was so dizzy this morning I probably shouldn't have been driving. I felt so dizzy I was running into things at work and practically falling asleep standing up. I don't think I will take the medicine tonight. The other thing that sucked this week was my leg hurt really bad from my Avonex shot. My leg didn't start hurting until Tuesday, (I had my shot on Saturday) I tried to ice it but that didn't help. My Avonex nurse said it sounded to her like I was not high enough on my leg. The shot had been given in the side of my thigh. So I guess Heath will have to go higher next time. Anyway my leg hurt for 2 days and now its fine. The first day it hurt it was really painful. Every step I took hurt. The second day wasn't so bad.
This weekend should be really fun. Heath and I are going to a ice skating event at the Energy Solutions arena (its where the Utah Jazz play) and we get the IMFT suite. Heath won the tickets at work. I can't wait it will be so much fun.
Next Tuesday we leave for Oregon. Its going to lots of fun too, I get to see all my family and spend Thanksgiving with them. We are suppose to have dinner at my Grandma's, I am really looking forward to it.
Only one more day of work this week. I am really happy about that too 2 days off then work 2 and then 5 days off. A nice little vacation. Well nothing else to report.

A Couple Good Days a Couple Bad

2007-11-10T09:16:00.000-07:00

I know its been a while since I wrote but I been kind of busy. Where should I start? 2 weeks ago I was feeling better than I had felt in months. I had 4 days of feeling like I felt before I got MS. My head didn't hurt, no joint pain, nothing. I was really happy. It was so nice to not feel sick for a while. I didn't fall asleep in class at all that week, I was able to study for my test. I had a test in my inorganic chemistry class on that Thursday, I felt rested and felt really good about the test. I even finished 20 minutes early. I have never finished a test that early.

Well Friday rolls around and I started to feel weird about 8am I can usually tell when I am going to get a headache. I went to class and began to feel worse. I began to feel like I was going to throw up and my head began to pound. I went back to work and told my boss I had a horrible headache and I wanted to go home. I cleaned up the lab and left. I had to go get my prescription for my Avonex. I went to the doctor's office and of course it wasn't ready. As I am waiting for it the fire alarm goes off. Having a horrible headache and having to listen to a annoying fire alarm is not fun. It was at least 10 minutes before the alarm was turned off. Finally I get my prescription. I left a message with my doctor to call me so we could discuss these headaches. Sally the physicians assistant called me back. I told her about the headaches and recommended a drug I could take gabapentin. I called Heath and asked him to pick it up. I went home and fell asleep. I felt better after my nap. Heath go home I took the medicine and went to sleep again.

Saturday was a fun day. I went to school to work on a homework assignment with my friend and classmate Jenseena. We tried to work on the assignment but mostly we talked about other things. We gave up on the homework assignment about 12:30 (we had been working on it since 10:30) and went to lunch. I got home about 4. I had a headache the whole time but I am use to having headaches so I just ignore it. Heath gave me my shot of Avonex about 7, it hurt more this time but it was because I was tensing my muscle. Sunday was uneventful. This last week was not very good because the medicine I was put on made me really dizzy and tired. I fell asleep in class almost everyday and I was practically falling asleep at work. I am staying on the medicine for another week to see if the side effects go away. I hope so, but so far it is not getting rid of my constant headaches.

I really hope the Avonex begins working on these headaches. I am so tired of waking up with a headache, or getting a headache later in the day or what ever. Or having a headache all of the time. My head has felt strange since my head injury. (For those of you reading this who don't know I fell in January and and hit my head so hard I ended up with a brain bleed, brain contusion and a severe concussion. I stayed in ICU over night.) This feeling has been there since the head injury. Sometimes its a constant dull pain other times its a excruciating pain. It just depends on the day. Well I have written enough for now.

My first dose of Avonex

2007-10-28T11:33:00.000-06:00

Last week we went to the MS conference. I was really inspiring to hear how someone else was dealing with MS. It definitely made me feel better about having the disease. The woman who spoke was on the drug Tysabari which is a once a month IV.
It was great getting to see LeAndra. We had a lot of fun. On Saturday we went shopping a LeAndra got her haircut. We all went to Sushi that night, it was really fun. Sunday I wasn't feeling very well I had a really bad headache so LeAndra and I were watching TV while Heath made Lasagna. I love it when Heath cooks, all his food tastes so good. Later we rented 2 movies. LeAndra left on Monday but I will see her in November when Heath and I go back to Oregon to see my family.
The week went pretty good, I was really tired on Tuesday but overall the rest of the week wasn't to bad. I spent most of the week trying to get my medicine to me before Saturday. I spent a lot of time on the phone with various people from MedCo and Avonex. For some reason they didn't have all the paperwork in order until Thursday, it was extremely frustrating. I got everything worked out so the medicine would be delivered on Friday. Well for some reason the FedEx driver could not read the package correctly. (He was suppose to drop the package off at the leasing office if I wasn't home.) It even said on the package leave at leasing office. So I got home around 5:30pm and the package wasn't there and neither was any proof that FedEx had been there. I called Avonex and they told me FedEx would try delivering it on Monday. Well that wasn't going to work, so Heath and I went to the FedEx office to pick the package up. Needless to say the driver didn't even get back until the office was closed. The office closed at 7:00pm and the driver didn't show up until 7:30pm; we had to wait around for over an hour. I didn't have the best attitude and I got irritated at the guy at the counter and yelled at him. I apologized later but I still shouldn't have done that since it wasn't his fault.
After getting the medicine Heath and I went to dinner at Applebee's which ended up being free because we ended up waiting over and hour for our food. After that we went to the movie Saw 4. It was gory but the storyline was topnotch once again. It ended where you know there will be another one. I love those movies, they may be gory but the storyline is so twisted that you never know what's going on until the end. Very good movie.
Saturday I went to the library to study for my midterm on Thursday with a friend. We studied for awhile and then went to lunch at this great cafe. When I got home I watched the Avonex DVD. Then waited for the nurse to show up to show Heath and I how to give me the shot of Avonex. She got there about 8:15pm. She was really funny and helpful. She told me I needed to give myself the shot so she knew I could do it on my own. I procrastinated for awhile by talking about my head injury and my first idiot neurologist. Finally I just did it I gave myself the shot!Now for people who don't know me I am not afraid of needles but I do not like them. Every time I've had my blood drawn if I look at the needle or the blood I will feel faint. I am fine with other people's blood just not my own. It wasn't as bad as I thought. After you get past the needle going through the top part of the skin it didn't even really hurt. I am not sure I could do it every week, but now I know I could do it if Heath has to go out of town. Well the nurse left about 10pm. I ate dinner and fell asleep on the couch around 11pm.
Woke up today with some muscle aches and a headache but I feel pretty good. The side effects aren't too bad, its definitely worth it if I am going to start feeling better. Well I think that's enough for now.

Another day in the life of MS

2007-10-17T22:13:00.000-06:00

I got up today and went to work. I was feeling OK at first, but then I felt completely drained. It's been such a long week. I finished what I was doing and told my boss I would probably not come back after I went to class. Oh yeah I am in inorganic chemistry at the University of Utah. I am really trying to finish the class because I am over half way through. I went to class but I was so tired during it I was beginning to fall asleep. After class I went home. I pretty much slept the rest of the afternoon. I feel much better now. I am going to go to work tomorrow for half the day, I need to keep my life as normal as I can. My best friend from Oregon will be here tomorrow I can't wait to see her. She is always so positive so I know she will make me feel better.
We are going to go to an MS conference that my doctor is speaking at. Its about new developments in MS. I think it will be a good conference. Heath made reservations at the hotel its at so we are going to stay there for the night. I think it will be really nice. Well I am getting tired again so I am going to go for now.

My First Week of Having MS

2007-10-16T18:08:00.000-06:00

I was just diagnosed with Multipls Sclerosis on October 10, 2007. This was a big shock to me since my Mother died of it 4 years ago. I had my first treatment yesterday and today of IV steroids (Solu-medrol). Both sessions were about 2 hours long.

I am suppose to start the Avenex in the next week. Yea a weekly shot can't wait for that and the side effects of it. The side effects are usually flu-like symptoms the day after the injection. I get to be sick more! I am really so mad I have this disease it has changed my life dramatically. Everything I was planning to do in my life has changed. I wanted to have children, but I am not going to do that. Yes they say you can have children with this disease but I absolutely hated it when my mother got sick and I was 18 years old. I can't imagine having a child and from the day they were born they will know they have a sick mother. I don't want to put a child through that. Also you can't be on any of the medicine when you are pregnant and since the lesions are in my spinal cord not having treatment for 10 months is not a good idea. I just went with out treatment for 10 months and I already have weakness in my left side and have lost some dexterity in my fingers.

I HATE THIS DISEASE!!!

I just can't understand how God could do this to me and my family, they went through so much with my Mother and now they get to watch me go through it also. Yes I am light years ahead since I have been diagnosed 20 years before my Mother but it still doesn't change the fact that they haven't found a cure for this disease. Well I think I have written enough for today.