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.
Thursday, April 24, 2008
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.
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.
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.
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.
Saturday, February 16, 2008
I Feel Amazing Today!
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.
Tuesday, December 18, 2007
2007 Year in Review
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.
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.
Saturday, December 8, 2007
A lot of Good days, One Bad Day and Reflecting on life
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.
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.
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