I just had to share this with you. In a way I kind of miss the old site. The guestbook was always full of words of encouragement that I could always turn to when I have rough day. Even though there aren't any comments on this page I know that there are a lot of people pulling for me and this post reminded me that I can also rely on something deep down inside that has be preparing me for this challenge all along. Till next time ;-)
Wednesday, September 14, 2011
Wow
After finishing my last post I logged into my Facebook page. There is a new feature that shows you what you post on today's date one year ago. I was shocked by what I had to say months before this whole ordeal began. The post that I made really puts all the ups and downs of the last year in prospective for me. This is what I said on 9/14/2010: Regardless of the challenges that come my way, I am content and taking in all that life is offering me. I really hope I can live up to my own expectations.
Everything Must Change
Hello Friends,
Life seems be moving at a thousand miles an hour. I fully intented to talk with you yesterday, but exhaustion got the best of me last night. Last week was my 3 month follow up appointment with the neurologist. St. Mary's hospital is so incredible. I love my doctor. He has never made me feel rushed and always takes the time to explain things to me fully. He thinks that I am doing well and currently in remission. We started talking about my medication. I try not to complain (except to Cheryl), but I just can't take the injections anymore. If someone didn't know any better they might see the numerous bruises in various stages of healing as signs of domestic violence. I have been on the medication long enough for there to be multiple red, sore, itchy, bruises at every injection site. I just cannot see myself doing this for the rest of my life. When it's time for my shot I have to choose placement based on the least inflammed skin. We decided to try the new oral medication. We spent a lot of time discussing the pros and cons of this decisions. This is a very new medication. It has only been on the market for about a year. So far, there haven't been any major concerns, at least none that the drug company has been forced to disclose.
Like all medications there are definitely risks associated with the Gilenya. Some of them are pretty scary. I had to have blood work, an EKG and an eye exam just to make sure I am healthy enough to take this medication. This drug can cause heart rate issues so severe that the FDA requires the first does to be given in the physician's office and I have to be on a heart monitor for at least 6 hours. It can causes macular swelling that could cause vision problems. It can raise blood pressure and will make me more prone to infection. Oh yeah and it might impair my liver function. Sounds like fun, huh?!
I know it sounds crazy and like a huge risk, but I did not come to this decision lightly. I have to think about a medication that I can seriously expect to be able to take in the long term. People that take insulin always say you get used to it and the injections become easy. Well the injections aren't the problem. I am so over the needle and the actual act of injecting myself. It is a day or later. The doctor explained that my body picks up on the alien substance in my body and mounts a serious response. This makes a lot os sense seeing that this over-active immune system my be the source of the whole problem in the first place. I had hope that this allergic response would wane over time, but Dr Sullivan said this was doubtful. Having my arms, legs, stomach and back covered in hives is too much to handle. So, this is why I have made my decision to take my chances with the new medication.
There is also a medication that we are going to be adding. I will be trying Ampyra which is mediction designed specifically for the ambulation issues with MS. It also has a fun bunch of side effects, but these are less life threatening than the Gilenya. This one will just give me a urinary tract infection. I hope that this will allow me to dump the cane. My dog has becoming increasingly frustrated with the slow pace of our morning walks! I have to laugh about it because crying just isn't an option.
Speaking of Gizmo, since our move he has started the grueling process of training me. I moved to a place that has a dog run and more freedom for him. Well, Gizmo immediately decided to take advantage of this. A while back I told you I was training him to use puppy pads. Well, I suppose seeing other dogs do their business outside shamed him in some way because he has refused to use the puppy pad since we moved. To prove his intentions he even tore it out of the frame and ripped it to shreds. Sooooooo, Gizmo has been working very hard to get me properly trained LOL. The upside is no more "accidents" in the house. I wonder was he doing it on purpose all along in protest to the indignity of being asked to use a puppy pad!
I also made it through my first real lecture. It turns out 3 hours was barely enough time to cover everything I wanted to talk about. No one fell asleep and I even got a couple of laughs, so I guess I will call it a success. It is so strange being on this side of the lectern. There is a lot of time and work that goes into preparing a lecture. I really feel bad about the fact that I rarely completed the reading assignments when I was a student. But I will be doing my damnedest to make sure that my students do!
Thank you again for listening. Talk to you again soon!
Life seems be moving at a thousand miles an hour. I fully intented to talk with you yesterday, but exhaustion got the best of me last night. Last week was my 3 month follow up appointment with the neurologist. St. Mary's hospital is so incredible. I love my doctor. He has never made me feel rushed and always takes the time to explain things to me fully. He thinks that I am doing well and currently in remission. We started talking about my medication. I try not to complain (except to Cheryl), but I just can't take the injections anymore. If someone didn't know any better they might see the numerous bruises in various stages of healing as signs of domestic violence. I have been on the medication long enough for there to be multiple red, sore, itchy, bruises at every injection site. I just cannot see myself doing this for the rest of my life. When it's time for my shot I have to choose placement based on the least inflammed skin. We decided to try the new oral medication. We spent a lot of time discussing the pros and cons of this decisions. This is a very new medication. It has only been on the market for about a year. So far, there haven't been any major concerns, at least none that the drug company has been forced to disclose.
Like all medications there are definitely risks associated with the Gilenya. Some of them are pretty scary. I had to have blood work, an EKG and an eye exam just to make sure I am healthy enough to take this medication. This drug can cause heart rate issues so severe that the FDA requires the first does to be given in the physician's office and I have to be on a heart monitor for at least 6 hours. It can causes macular swelling that could cause vision problems. It can raise blood pressure and will make me more prone to infection. Oh yeah and it might impair my liver function. Sounds like fun, huh?!
I know it sounds crazy and like a huge risk, but I did not come to this decision lightly. I have to think about a medication that I can seriously expect to be able to take in the long term. People that take insulin always say you get used to it and the injections become easy. Well the injections aren't the problem. I am so over the needle and the actual act of injecting myself. It is a day or later. The doctor explained that my body picks up on the alien substance in my body and mounts a serious response. This makes a lot os sense seeing that this over-active immune system my be the source of the whole problem in the first place. I had hope that this allergic response would wane over time, but Dr Sullivan said this was doubtful. Having my arms, legs, stomach and back covered in hives is too much to handle. So, this is why I have made my decision to take my chances with the new medication.
There is also a medication that we are going to be adding. I will be trying Ampyra which is mediction designed specifically for the ambulation issues with MS. It also has a fun bunch of side effects, but these are less life threatening than the Gilenya. This one will just give me a urinary tract infection. I hope that this will allow me to dump the cane. My dog has becoming increasingly frustrated with the slow pace of our morning walks! I have to laugh about it because crying just isn't an option.
Speaking of Gizmo, since our move he has started the grueling process of training me. I moved to a place that has a dog run and more freedom for him. Well, Gizmo immediately decided to take advantage of this. A while back I told you I was training him to use puppy pads. Well, I suppose seeing other dogs do their business outside shamed him in some way because he has refused to use the puppy pad since we moved. To prove his intentions he even tore it out of the frame and ripped it to shreds. Sooooooo, Gizmo has been working very hard to get me properly trained LOL. The upside is no more "accidents" in the house. I wonder was he doing it on purpose all along in protest to the indignity of being asked to use a puppy pad!I also made it through my first real lecture. It turns out 3 hours was barely enough time to cover everything I wanted to talk about. No one fell asleep and I even got a couple of laughs, so I guess I will call it a success. It is so strange being on this side of the lectern. There is a lot of time and work that goes into preparing a lecture. I really feel bad about the fact that I rarely completed the reading assignments when I was a student. But I will be doing my damnedest to make sure that my students do!
Thank you again for listening. Talk to you again soon!
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