My leg has been hurting.
There is the truth. Laid out on this blog.
I don't know if I'm gonna have to deal with this for my whole life which if I do will suck completely. I have been working 6 days a week for the past few weeks and my leg has been having twinges in it. At the end of the day it's as hard as a rock, and not in a good in shape way.
This brings my greatest fear to light. That this blood clot will never really leave me. That they still don't know why it came about so who is to say it's not going to knock me on my ass again sometime soon. That I am never going to not have some sort of pain or discomfort if I'm on my legs for long periods of time.
I'm afraid I'm never going to be fixed. Actually, I know I'm never going to be. I take 3 different medications and 3 different vitamins throughout the day every day. That will eventually be brought down to 2 different meds, but still. If I screw up with the medication I will be having a flare up. Last time that happened I ended up in the hospital.
Who is to say that anyone will want to deal with this? I know I don't. It's almost a year and I'm already sick of the whole stomach thing, and the doctor's appointments and the blood work. I was thinking about it last night, and it truly sucks to know that I'm gonna have to go to Dr. I probably every 4-6 months. I don't know if that will change but at the moment it looks like that is my life.
I don't know why I have been so preoccupied with my whole endeavor recently. Actually, I do. I have too much time on my hands to think about it. This summer was one of the best times I had had in years. And when I try to share that with people, they don't understand how they could have made me so happy. They still do, but seriously the best part about this summer was I forgot I had been sick, or that I will have to deal with this for the rest of my life. I have always believed that summer is a special time, but this year sure proved me correct. I'm just waiting for the train to get back on track, because I know it will. I can not help but believe it.
Tuesday, October 11, 2011
Monday, October 3, 2011
Stay Relentless
About a year ago, I heard about this guy who was in the grade below me having cancer. I had a few classes with him through out my high school experience, and he was always such a nice kid, with a huge smile on his face. He got along with everyone it seemed and I did not know one person who had anything bad to say about him.
Today I woke up to find on Facebook that this wonderful guy died. Instead of wallowing in this awful disease that has claimed so many people's lives, he started a non profit and tried to turn this into something so positive. His determination is such an inspiration to all that knew him, and even those who have heard his story through friends.
It's moments like this that make me feel so small in this world. Here is this great guy who was doing such amazing things to fight cancer and he was taken from this life. Your positivity and inspiration to those around you will continue your message and legacy for many years to come. You told people to stay relentless against cancer. Don't worry, everyone is going to be a little more relentless to keep fighting your battle.
Rest in peace.
Today I woke up to find on Facebook that this wonderful guy died. Instead of wallowing in this awful disease that has claimed so many people's lives, he started a non profit and tried to turn this into something so positive. His determination is such an inspiration to all that knew him, and even those who have heard his story through friends.
It's moments like this that make me feel so small in this world. Here is this great guy who was doing such amazing things to fight cancer and he was taken from this life. Your positivity and inspiration to those around you will continue your message and legacy for many years to come. You told people to stay relentless against cancer. Don't worry, everyone is going to be a little more relentless to keep fighting your battle.
Rest in peace.
Sunday, October 2, 2011
Due to the fact that I was supposed to go to their show tonight, I decided to share one of my favorite songs by Third Eye Blind. I don't know why I love this song but it's always been one of my favorites. In fact, I didn't realize until I was searching youtube how many of their songs I do enjoy. I think they are one of those bands that you love all their songs but don't realize that they are the ones who sing them. You know those bands, when you listen to the song and find out who sings it and there is the dawning of "Noooo wayyyy".
Okay, so now that that rambling is out of the way, I wanted to share about my favorite movie. I know some people will probably roll their eyes at the connections I made to my own life, but please bare with me. 50/50 is an amazing movie. Okay, maybe not win tons of awards amazing, but the actors are able to show the terrifying journey of getting bad medical news at such a young age. As I was watching the movie, and Adam, the main character finds out about his cancer I couldn't help but echo his questioning his diagnosis because of his age. Why me, I'm too young to have cancer. Those were exactly the words I have thought over and over again this past year....especially when I was barely able to walk.
I cried during the movie. Little old emotional me cried during the movie when he was in the hospital and breaking down to his mother. Throughout the whole movie, Adam put up such a strong front to everyone he cared about. He didn't want them to see him vulnerable. I could not help but realize this is exactly what I have been doing. This is the reason why I ended up in the hospital back in April or May, I can't remember which month. I don't want to be a burden on those who I love, but at the same time when crunch time comes, we can't help but break down and let people in. This is exactly what happened with Adam, at the most crucial moment in his medical journey, he reached out for reassurance from his mother.
I would really recommend seeing this movie. I went with my mother on Friday and am so happy that I did go see it.
Okay, so now that that rambling is out of the way, I wanted to share about my favorite movie. I know some people will probably roll their eyes at the connections I made to my own life, but please bare with me. 50/50 is an amazing movie. Okay, maybe not win tons of awards amazing, but the actors are able to show the terrifying journey of getting bad medical news at such a young age. As I was watching the movie, and Adam, the main character finds out about his cancer I couldn't help but echo his questioning his diagnosis because of his age. Why me, I'm too young to have cancer. Those were exactly the words I have thought over and over again this past year....especially when I was barely able to walk.
I cried during the movie. Little old emotional me cried during the movie when he was in the hospital and breaking down to his mother. Throughout the whole movie, Adam put up such a strong front to everyone he cared about. He didn't want them to see him vulnerable. I could not help but realize this is exactly what I have been doing. This is the reason why I ended up in the hospital back in April or May, I can't remember which month. I don't want to be a burden on those who I love, but at the same time when crunch time comes, we can't help but break down and let people in. This is exactly what happened with Adam, at the most crucial moment in his medical journey, he reached out for reassurance from his mother.
I would really recommend seeing this movie. I went with my mother on Friday and am so happy that I did go see it.
Saturday, October 1, 2011
Dr. I....It's Almost Our Year Anniversary
After the first visit hesitation, I have looked forward to my visits with Dr. I immensely. He is such a genuine guy, never making me feel as if I am one of his many patients. I always feel like I am number one when it comes to him. I think part of the reason why I feel like that is because he came to visit every day when I was in the hospital. The new pharmacist asked if that was due to the fact that he had to, but I said absolutely not, he came to ease my mind. At least that's how I saw it.
Why am I talking so much about Dr. I you may ask? It's because I had an appointment with him yesterday.
Yesterday was the first doctor's appointment I had in months. Seriously, I had not had to step in a doctor's office since May/June and I could not be happier about the fact that it is months between appointments for me. I guess Irene is thanks to that, but I still feel like it's a huge relief that I don't have to see a doctor every month like I had been.
Anyway, we discussed my progress per usual, but we also discussed taking me down my steroids once again. Now we are going below the dosage I was on before going to the hospital which is exciting because I have no had any flair indications at all. So small victory on that part. He did say that when I see him next, which is in a few months, I should be off the steroids!!! This will be around the year anniversary of these whole shenanigans starting so I could not be happier with the idea that another one of my medications will be discontinued when the year anniversary occurs.
Anyway, I also learned my weight with this appointment and while it's completely fine with my height, I'm still not fully okay with it and will begin running on Monday to become more in shape. Please don't roll your eyes. Being in shape and being skinny are two completely different things and I need to start running in order to not only sort things out in my life in my head, but also to feel better about myself.
Dr. I and I also discussed what happens during flare ups. Those damn things scare the hell out of me if I'm going to be completely honest. Last flare up I ended up in the hospital, and a friend was recently hospitalized when she experienced a flare up. I just do not want to end up in the hospital again. That was not a fun experience at all. He told me how a flare up would work in my situation and if I am understanding him correctly, it shouldn't occur if I stay on top of my medicine. This is not to say that the medicine will eventually stop working. I had to take blood work immediately following the appointment to check various levels, one being my liver level. He said that it had been slightly elevated which was not caused for concern but he wanted to keep an eye on it which is why he asked for the blood work right after the appointment.
If I'm going to be completely honest here, I'm completely terrified. I'm terrified that I will end up in the hospital again for a week, or even longer, without many people who will want to visit me. I'm afraid I am going to eventually have to give up my favorite food because it causes a flare up. I'm afraid that at the age of 24 I am already taking 10 different pills if I don't count the steroids which I will be off of hopefully by the end of the year. And I'm afraid that this stupid disease is going to control my whole life. I have had to worry about my pills whenever I go anywhere. I have had to worry about the nearest bathroom and stomach pains whenever I go out. I'm not a fan. How do you explain this thing to someone who has no experience with it. Luckily I have friends who also have it so our group has become understanding about it, but still. How do I even begin to explain this to people who come into my life in the future? This damn thing has been a pain for close to a year now, and I have tried to hide my worries from everyone. But what I would not give to be normal again. With a normal stomach that I no longer have to worry about medicine, and blood and enzyme levels.
Why am I talking so much about Dr. I you may ask? It's because I had an appointment with him yesterday.
Yesterday was the first doctor's appointment I had in months. Seriously, I had not had to step in a doctor's office since May/June and I could not be happier about the fact that it is months between appointments for me. I guess Irene is thanks to that, but I still feel like it's a huge relief that I don't have to see a doctor every month like I had been.
Anyway, we discussed my progress per usual, but we also discussed taking me down my steroids once again. Now we are going below the dosage I was on before going to the hospital which is exciting because I have no had any flair indications at all. So small victory on that part. He did say that when I see him next, which is in a few months, I should be off the steroids!!! This will be around the year anniversary of these whole shenanigans starting so I could not be happier with the idea that another one of my medications will be discontinued when the year anniversary occurs.
Anyway, I also learned my weight with this appointment and while it's completely fine with my height, I'm still not fully okay with it and will begin running on Monday to become more in shape. Please don't roll your eyes. Being in shape and being skinny are two completely different things and I need to start running in order to not only sort things out in my life in my head, but also to feel better about myself.
Dr. I and I also discussed what happens during flare ups. Those damn things scare the hell out of me if I'm going to be completely honest. Last flare up I ended up in the hospital, and a friend was recently hospitalized when she experienced a flare up. I just do not want to end up in the hospital again. That was not a fun experience at all. He told me how a flare up would work in my situation and if I am understanding him correctly, it shouldn't occur if I stay on top of my medicine. This is not to say that the medicine will eventually stop working. I had to take blood work immediately following the appointment to check various levels, one being my liver level. He said that it had been slightly elevated which was not caused for concern but he wanted to keep an eye on it which is why he asked for the blood work right after the appointment.
If I'm going to be completely honest here, I'm completely terrified. I'm terrified that I will end up in the hospital again for a week, or even longer, without many people who will want to visit me. I'm afraid I am going to eventually have to give up my favorite food because it causes a flare up. I'm afraid that at the age of 24 I am already taking 10 different pills if I don't count the steroids which I will be off of hopefully by the end of the year. And I'm afraid that this stupid disease is going to control my whole life. I have had to worry about my pills whenever I go anywhere. I have had to worry about the nearest bathroom and stomach pains whenever I go out. I'm not a fan. How do you explain this thing to someone who has no experience with it. Luckily I have friends who also have it so our group has become understanding about it, but still. How do I even begin to explain this to people who come into my life in the future? This damn thing has been a pain for close to a year now, and I have tried to hide my worries from everyone. But what I would not give to be normal again. With a normal stomach that I no longer have to worry about medicine, and blood and enzyme levels.
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