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.
Thursday, June 12, 2008
Tuesday, May 27, 2008
Finally get to start Tysabri!
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.
Monday, May 19, 2008
Still Having Right Side Pain
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.
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.
Saturday, May 10, 2008
Right Side Pain and Preparation For a Colonoscopy
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.
Thursday, April 24, 2008
The New Job and of Course the MS!
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.
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.
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.
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