Monday, March 31, 2008

Heath Left and I Miss Him

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.

Saturday, March 29, 2008

A New Chapter in My Life

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.

Sunday, March 2, 2008

A Pretty Good Day

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.