Disclaimer: I am writing this late at night going on day 3 without sleep. I really shouldn't publish this, but I told myself that if I was going to start this blog and really keep people informed on how I was doing and what this disease is doing to me, that I needed to be honest and not sugar coat what was really happening. I apologize in advance for some of the language, if I had maybe gotten some sleep before writing this I could have been a little more creative with what I was saying insted of using the language that I did.
this has to be the worst that I have ever felt. I am failing and I am about to crack! Does anyone notice? No. If they haven't noticed by now, they never will. Everyone is just fucking oblivious to what is happening. Either that or they really don't care. Everyone is so worried about how my body is doing... what has the disease done to the machine that keeps me producing and paying the bills. Fuck what this disease has done to my head. It's a physical disease, how could it possibly do anything to mess with my head? How could anything be mentally wrong with me? I am still cohearant, still producing great ideas, still paying the bills, still making other peoples lives easy, still making people happy. There's no way in hell that anything can be wrong with someone who can do all that and still make it out of bed in the morning. It's when I stop producing, stop making life easy, stop paying the bills, that people finally realize that's somethings wrong. No, I need to correct that statement because it was incomplete. It's when these things are the result of me hospitalizing myself that people finally realize that something was wrong. But even then they think it's the disease. They don't even ask the question about my head. My head is alright, there's no way that it's not! It's just his body, that's all it is! Ignorance must be bliss!
Physically my body is in the worst shape that it's ever been. There isn't a day that I don't hurt. If it's not my bowels, it's my back which is all fucked with what they think is inflammatory arthritis from my crohn's, or it's my knee or hip which I've had tendonitis in since I was 18, or its a migrane that are a family trait, or it's some other form of muscle ache or joint pain from me just trying to get through life. I constantly take something for the pain, but that doesn't really help. All it does is delay what I feel or make me so fucked up that I have a hard time concentrating on the task at hand that it's easier for me to work in pain than deal with the fuzzy work I do produce when I am on that shit. So it's a choice between living in pain or not being able to live a normal life because I am too stoned to know what the fuck is going on. And here's a word of advice for you... don't mix pain pills and energy drinks/shots. That is one fucked feeling that I wouldn't even recommend to the biggest of junkies! I did it one day because I was in a ton of pain but absolutely needed to be alert for some meetings. I thought that would be the best solution. Well I was there and alert... but the side effects were fucked up!
Mentally, I am more fucked than I am physically. I am so well beyond gone that I feel like a robot. that's all I really am anyways... a money making robot that every now and again needs to be sent to the mechanics (hospital) for a tune up to get back out there producing and making the money again. My needs don't matter. My mental state of mind doesn't matter. My happiness doesn't matter. My mental well being doesn't matter. Just keep producing. Keep the family happy. That's all that anyone really cares about. Keeping the next generation happy. Keep the wife happy so she can raise the kids to be happy. Keep the family happy, that's all that society cares about. The daddy doesn't matter, as long as he produces. Keep a roof over their heads... keep food in their bellies... keep the heat and lights on... keep them healthy and able to learn so they can grow up to do whatever it is that they feel like doing... keep them all happy... that's all that matters.
What can really be done about this... Nothing! I know that I am in control of my life, but I have painted myself into this corner. I'm the one that decided to take on the responsibility of 2 kids. I am the one that allows my wife not to work as we barely scrape by most months. I am the one that sacrifices what is best for him for what is best for the group/family. I am the one that allows people to walk all over me and take advantage of my good will. So who can I really blame but myself? I created the world that I live in. Now I am forced to actually live in it. That's what is suppose to happen. You're suppose to live the life you create. Aparently this is the life that I created, so I am living it. Day by day. Night by night. Waiting for something to change... but it won't... nobody wants it to! That would mean that there's must be something wrong with Daniel... and that's not possible!
I would say FML.... but I created it... I have nobody to blame but myself...
18 June 2009
Today started out so good.....
I don't know why it surprises me that a day that started out so well ended so shitty.
17 June 2009
Back on the bike again! YAY!!!
Finally!!! A huge weight has been lifted off of my head. All of my doctors got together yesterday to talk about my treatment and they finally gave me some good news. While I have a lot of work to be done to get me back into tip top shape again, they think that I can absolutely work out again and so some training! This isn't without very specific rules though, which I don't mind one bit. 1) I take it easy 2) The second that I become tired, I stop 3) I stay well hydrated and 4) I don't work out 2 days in a row for at least a couple of weeks. I think that I can totally obey those rules. And with that I can get it out of my head that I failed.
I don't know why I kept thinking that I failed if I didn't ride this year. For some damn reason I couldn't shake that feeling. Now I can attempt to lay that to rest! With so little time left to train, and the completely deteriorated nature of my body, I don't know that I can complete my training as well as I would like to, but I am going to make a valliant attempt to make it happen.
Now time to get to work making it all happen!
Thank you all for your support and donations! I am forever truely grateful!
I don't know why I kept thinking that I failed if I didn't ride this year. For some damn reason I couldn't shake that feeling. Now I can attempt to lay that to rest! With so little time left to train, and the completely deteriorated nature of my body, I don't know that I can complete my training as well as I would like to, but I am going to make a valliant attempt to make it happen.
Now time to get to work making it all happen!
Thank you all for your support and donations! I am forever truely grateful!
15 June 2009
Totally wish I could have been there!
Great Quote that I read over the weekend "Friends are people that know everything about you, yet still like you" Don't know who to attribute that to, but its a great line anyways. Heard it from a good guy Bill Wixey, who is a local TV reporter who was recently diagnosed with Hodgskins Lymphoma and has started Chemo for it. He's currently writing a blog about his experiences, and it's inspiring stuff. You should check it out if you have a moment. blog.billwixey.com
This past weekend was the New York ride, and I totally wish I could have been there! I want to thank Hillary for keeping all of us that couldn't be there in the know through Twitter! It was nice to follow along with everything. Made me feel like I was there, kinda. I think I will have to tote the BlackBerry around with me this year and do the same!
Training is going.... well.... it's not going right now. I have been asked by my doctors to put it back on hold again. My body is torn up right now and the concern is that while by body is recovering from the training, it will be ignoring the inflamation in my colon and back thus perpetuating the problem. Although I do not like the idea of stepping down my training as I don't feel I have enough time as it is to do this, I understand where they are coming from and want to get better. Although I want to ride this year, I want to be around to ride for years to come!
I feel sooo old right now! I have more doctors looking into what's making me sick and hurt than my parents. I will say that I think that because I have so many, they are finally getting a good idea of the entirity of what's happening. Here's the latest update for anyone that cares about it. Saw my new Rheumatologist on Thursday of last week to find out what the hell is going on with all my back and joint pain. After seeing all my labs, and ordering a couple of xrays views that the other doctors hadn't, he came to the conclusion that I have inflamitory arthritis that is directly associated with my Crohn's. So with that diagnosis, I now know what is happening with everything. I am all flaired up, I have inflamation that has spread into my muscles and joints, and on top of it all they keep telling me I should find a therapist or get on to some form of SSRI to stablize my moods a bit because they are all concerned that I am depressed. Course of action... Put me on to Humira, continue on 30mg of Prednisone, add in Flaggyl, don't forget Prilosec, and top it off with a laundry list of suppliments including Calcium, Iron, Vitamin D, Folic Acid, oh and don't forget about the weekly infusions of Ferlocet. My pill organizer looks like my great grandfathers! The good news is that I am starting to think that we are getting somewhere with all of this. I have been sleeping better at night, not getting as tired in the middle of the day, and my appetite has seemed to return. Best of all I think I mBut ight be putting a couple of pounds back on this skinny frame of mine. I'm sure the doctors are happy to see that. Now if I can only convince them that taking all my blood for tests and labs isn't the best thing for my health..... LOL
I have to say that there was one aspect of training for this ride that I totally didn't anticipate at all, and that's the emotional strain that I have been putting on myself through this process. I'll admit that I am extremely hard on myself and have been pushing myself harder than I probably should be to get this going. That's also my nature though. I put a heavy mental load on myself this year to complete this task. The first year I didn't know about the ride till it was too late to even think about training, so I told myself "OK next year you will do this." Then the next year came along and I was in the hospital dealing with a flair up when training time came around, so my body told me "There's no way in hell that you are doing it this year!" so I sat back and crewed again. That compiled the mental load on myself to make it happen this year. Over the winter, by body gave out on me again and it forced me to start looking for different doctors. I really liked my last doc, but with nothing changing in years, I wondered if having a fresh set of eyes on the situation would be helpfull. Enter the great staff of doctors that I have now! They have been putting in a lot of work trying to figure this out and get me back on the path to good health again. I think now that we have it all figured out, we may be able to get me feeling good again. That would be a good thing for the future, as I have a family to think about now. But I am still hammering on myself about this! Why can't I get healthy enough to make this happen? It eats away at me constantly and I know it's all in my head. I know that I am not dissapointing anyone else if I don't ride. Hell I think that this year I would be yelled at more for attempting to ride than if I didn't. And I know that my family and friends wouldn't think any less of me if I didn't ride. But what eats away at me is that I would think less of MYSELF if I didn't ride this year. I know it makes me no less of a person if I don't ride this year, expecially considering that my doctors have told me not to. Yet in the back of my head it eats away at me, screaming that I failed. I don't deal well with failure, expecially when I have the ability to control it. I just can't get over that nagging feeling in the back of my head that I failed this year. And I don't know that there is anything that will get me over that except to just do it.
Oh the things that we put ourselves through.....
Well I really should get back to what I am suppose to be doing. Untill next time!
This past weekend was the New York ride, and I totally wish I could have been there! I want to thank Hillary for keeping all of us that couldn't be there in the know through Twitter! It was nice to follow along with everything. Made me feel like I was there, kinda. I think I will have to tote the BlackBerry around with me this year and do the same!
Training is going.... well.... it's not going right now. I have been asked by my doctors to put it back on hold again. My body is torn up right now and the concern is that while by body is recovering from the training, it will be ignoring the inflamation in my colon and back thus perpetuating the problem. Although I do not like the idea of stepping down my training as I don't feel I have enough time as it is to do this, I understand where they are coming from and want to get better. Although I want to ride this year, I want to be around to ride for years to come!
I feel sooo old right now! I have more doctors looking into what's making me sick and hurt than my parents. I will say that I think that because I have so many, they are finally getting a good idea of the entirity of what's happening. Here's the latest update for anyone that cares about it. Saw my new Rheumatologist on Thursday of last week to find out what the hell is going on with all my back and joint pain. After seeing all my labs, and ordering a couple of xrays views that the other doctors hadn't, he came to the conclusion that I have inflamitory arthritis that is directly associated with my Crohn's. So with that diagnosis, I now know what is happening with everything. I am all flaired up, I have inflamation that has spread into my muscles and joints, and on top of it all they keep telling me I should find a therapist or get on to some form of SSRI to stablize my moods a bit because they are all concerned that I am depressed. Course of action... Put me on to Humira, continue on 30mg of Prednisone, add in Flaggyl, don't forget Prilosec, and top it off with a laundry list of suppliments including Calcium, Iron, Vitamin D, Folic Acid, oh and don't forget about the weekly infusions of Ferlocet. My pill organizer looks like my great grandfathers! The good news is that I am starting to think that we are getting somewhere with all of this. I have been sleeping better at night, not getting as tired in the middle of the day, and my appetite has seemed to return. Best of all I think I mBut ight be putting a couple of pounds back on this skinny frame of mine. I'm sure the doctors are happy to see that. Now if I can only convince them that taking all my blood for tests and labs isn't the best thing for my health..... LOL
I have to say that there was one aspect of training for this ride that I totally didn't anticipate at all, and that's the emotional strain that I have been putting on myself through this process. I'll admit that I am extremely hard on myself and have been pushing myself harder than I probably should be to get this going. That's also my nature though. I put a heavy mental load on myself this year to complete this task. The first year I didn't know about the ride till it was too late to even think about training, so I told myself "OK next year you will do this." Then the next year came along and I was in the hospital dealing with a flair up when training time came around, so my body told me "There's no way in hell that you are doing it this year!" so I sat back and crewed again. That compiled the mental load on myself to make it happen this year. Over the winter, by body gave out on me again and it forced me to start looking for different doctors. I really liked my last doc, but with nothing changing in years, I wondered if having a fresh set of eyes on the situation would be helpfull. Enter the great staff of doctors that I have now! They have been putting in a lot of work trying to figure this out and get me back on the path to good health again. I think now that we have it all figured out, we may be able to get me feeling good again. That would be a good thing for the future, as I have a family to think about now. But I am still hammering on myself about this! Why can't I get healthy enough to make this happen? It eats away at me constantly and I know it's all in my head. I know that I am not dissapointing anyone else if I don't ride. Hell I think that this year I would be yelled at more for attempting to ride than if I didn't. And I know that my family and friends wouldn't think any less of me if I didn't ride. But what eats away at me is that I would think less of MYSELF if I didn't ride this year. I know it makes me no less of a person if I don't ride this year, expecially considering that my doctors have told me not to. Yet in the back of my head it eats away at me, screaming that I failed. I don't deal well with failure, expecially when I have the ability to control it. I just can't get over that nagging feeling in the back of my head that I failed this year. And I don't know that there is anything that will get me over that except to just do it.
Oh the things that we put ourselves through.....
Well I really should get back to what I am suppose to be doing. Untill next time!
05 June 2009
Thank You, Thank You, Thank You!!!
Before I get into what's been happening with my training and all that jazz, I want to say a huge THANK YOU to all of you that have taken the time to give this blog a read and reach into your pocket to support such an amazing cause! It really means a lot to me that you would help out even in such difficult financial times for the world. My hope is that through your help, one day, we will know what causes these diseases and find a cure for them. Then, maybe, I could spend less time in the doctors offices and more time out living life with my family and all of you amazing friends! Once again Thank You for all you have done to support me in this quest of mine. It means the world to me!
Like I said it would happen, I am updating this blog again from the infusion center of my doctors office. I don't know if this is a great way to start the week off or not, but it is what it is and I will learn to love it eventually. The nurses around here are great though. They have a great sense of humor and at least the walls aren't that nasty medical white that drives me insane. I really don't know why that color gets to me so much... but it does for some reason. I don't think it's because I have spent so much time in hospitals staring at it, because if that were true, the color of my office would drive me insane as I spend more time there than anywhere else really.
Training is going well, except that I took last week off by doctors orders. I have way too many doctors right now... although I am happy to have them. I am starting to come back around to feeling better so I hope that maybe they have figured something out. I don't know if these iron infusions are doing anything for me yet, but they tell me that my numbers were so low that it may take a couple weeks before I really notice anything.
As for training... wow it sucks! I haven't really had time to get out on the road and train, I have been doing all of it in the gym on a stationary bike on my lunch hours. I need to get out on the road soon. Maybe this weekend I'll take the bike down to Alki and ride around for a while. Anyone up for 10-15 miles this weekend? I don't think I could do any more than that right now. At this pace I hope I can be ready in time for the ride. I don't know that I will be able to complete the entire 210 miles, but I will certantly try. Doctors are pushing me to take it easy, so I am, but at this pace I won't have the proper training in to complete the ride. On a brighter note, I think I may have a riding partner this year! Talking with my father, he thinks he could make it happen and ride with me this year! I would be so stoked if he could! I have been so overwhelmed this year by the outreach my family has pulled this year. My wife, mother, and sister are joining the crew this year along with a coworker/friend will be on the Crew, along with a lot support from other family members. I keep trying to convince others to ride with me, but with time short, it's making it harder to do.
Well I really should be focusing on the task at hand right now... so I will go. Thank you all for your support and please reach out and chat if you feel like it!
Until next time!
Like I said it would happen, I am updating this blog again from the infusion center of my doctors office. I don't know if this is a great way to start the week off or not, but it is what it is and I will learn to love it eventually. The nurses around here are great though. They have a great sense of humor and at least the walls aren't that nasty medical white that drives me insane. I really don't know why that color gets to me so much... but it does for some reason. I don't think it's because I have spent so much time in hospitals staring at it, because if that were true, the color of my office would drive me insane as I spend more time there than anywhere else really.
Training is going well, except that I took last week off by doctors orders. I have way too many doctors right now... although I am happy to have them. I am starting to come back around to feeling better so I hope that maybe they have figured something out. I don't know if these iron infusions are doing anything for me yet, but they tell me that my numbers were so low that it may take a couple weeks before I really notice anything.
As for training... wow it sucks! I haven't really had time to get out on the road and train, I have been doing all of it in the gym on a stationary bike on my lunch hours. I need to get out on the road soon. Maybe this weekend I'll take the bike down to Alki and ride around for a while. Anyone up for 10-15 miles this weekend? I don't think I could do any more than that right now. At this pace I hope I can be ready in time for the ride. I don't know that I will be able to complete the entire 210 miles, but I will certantly try. Doctors are pushing me to take it easy, so I am, but at this pace I won't have the proper training in to complete the ride. On a brighter note, I think I may have a riding partner this year! Talking with my father, he thinks he could make it happen and ride with me this year! I would be so stoked if he could! I have been so overwhelmed this year by the outreach my family has pulled this year. My wife, mother, and sister are joining the crew this year along with a coworker/friend will be on the Crew, along with a lot support from other family members. I keep trying to convince others to ride with me, but with time short, it's making it harder to do.
Well I really should be focusing on the task at hand right now... so I will go. Thank you all for your support and please reach out and chat if you feel like it!
Until next time!
01 June 2009
Can't Think of a Title for this one.......
So we are another week closer to the ride, and once again I am updating you all on my progress from the doctors office. Lately I have been highly anemic, so the doctor has ordered me to receive iron infusions once a week for the next 8 weeks. More than likely you will be seeing more and more posts from the chairs here at the infusion center as we work on getting me into better shape for the ride, and more importantly, better shape for my family.
Training is going....... slow. I haven't spent a lot of time on the bike in the last week and it's all my own fault. Work is a little crazy for some reason. We are in a lul between major events, yet I feel like I have way too much going on to keep on top of things. I have had a lot more put on me to keep track of, and soon I will be without interns to help me. That's when life will get interesting for me around work... leaving me less time to sneak away at lunch to the Gym to get a bit of training in on the stationary bike during my lunch breaks. Soon I hope that I can be feeling well enough to start riding to and from work. It's a bit of a run from Factoria to Burien (actual miles I am not sure of, but I am sure I could look it up if I really wanted to) but I know the route very well and I know where the busses run along that route, so if it becomes too much I can hop on the bus and head home for the night. Both routes to and from work are beautiful to ride, both taking you along or over Lake Washington. Eventually I would love to be able to ride that both ways completely. Hopefully one day I will be able to do just that
Health wise, I don't know if I can say that I am doing better. Like I said at the top of this post, I am in the infusion center of my doctors office getting an iron infusion. (the first of many that he has planned for me) I hope they do what they say they will, as I have been easily exhausted lately and it's kinda starting to piss me off. I can't get through a normal day without feeling like I need a nap. The last bit of blood work that they did they told me my iron # was a 12. They say that a normal adult males # should be around 100. Now I don't have a clue what these #'s actually mean... but elementary math tells me that I am far away from where I need to be.
I HATE THIS!!! I know that I am doing a lot better than a lot of people in this world, and I try to take that into consideration when I am complaining to myself aobut what's going on, but I can't help but to be frustrated with what's been going on. I want to just live life and not feel like I am 60 years old. Hell I am just sitting here in the infusion chair and I am falling asleep. (not that I couldn't use the sleep, I'm just saying) I was out doing the yardwork this past weekend, and I couldn't even get through that without taking breaks. I work a desk job. I have a lot of mental tasks that go along with it, but it isn't even close to what you would think was a physically demanding job. Yet I find myself around 3pm everyday falling asleep at my desk. (good thing I don't take lunch till around then, I can close my office door and take a nap) .......
I have to stop this rant that I was going down. It doesn't help to bitch about it, and it doesn't fix anything, so I am going to stop wasting your time and mine. While yes, sometimes venting about emotional issues is a good thing, I find it to be a fruitless proposition that I don't like to get in to. (my doctor would tend to disagree with this...) I mean venting is a good thing and helps bring down stress levels and improves health and all that happy go lucky shit... but I feel bad venting about this.
I am a very fortunate being on this earth! I have a lovely wife, a great family, a roof over my head, food to eat, a great job that doesn't look like it's going anywhere anytime soon, and am up and mobile most of the time. Yes my health leaves something to be desired... but is that something to complain about? I am alive, I am moving, I am a productive member of society. Complaining about what's going wrong won't get me anywhere. Besides, you all have your own things to deal with without having mine piled on top.
I hope that you all are well, and that life has blessed you as much, if not more, than it has me. As always please feel free to reach out and contact me if you want to, I am always up for a good conversation.
Until we meet again.......
Training is going....... slow. I haven't spent a lot of time on the bike in the last week and it's all my own fault. Work is a little crazy for some reason. We are in a lul between major events, yet I feel like I have way too much going on to keep on top of things. I have had a lot more put on me to keep track of, and soon I will be without interns to help me. That's when life will get interesting for me around work... leaving me less time to sneak away at lunch to the Gym to get a bit of training in on the stationary bike during my lunch breaks. Soon I hope that I can be feeling well enough to start riding to and from work. It's a bit of a run from Factoria to Burien (actual miles I am not sure of, but I am sure I could look it up if I really wanted to) but I know the route very well and I know where the busses run along that route, so if it becomes too much I can hop on the bus and head home for the night. Both routes to and from work are beautiful to ride, both taking you along or over Lake Washington. Eventually I would love to be able to ride that both ways completely. Hopefully one day I will be able to do just that
Health wise, I don't know if I can say that I am doing better. Like I said at the top of this post, I am in the infusion center of my doctors office getting an iron infusion. (the first of many that he has planned for me) I hope they do what they say they will, as I have been easily exhausted lately and it's kinda starting to piss me off. I can't get through a normal day without feeling like I need a nap. The last bit of blood work that they did they told me my iron # was a 12. They say that a normal adult males # should be around 100. Now I don't have a clue what these #'s actually mean... but elementary math tells me that I am far away from where I need to be.
I HATE THIS!!! I know that I am doing a lot better than a lot of people in this world, and I try to take that into consideration when I am complaining to myself aobut what's going on, but I can't help but to be frustrated with what's been going on. I want to just live life and not feel like I am 60 years old. Hell I am just sitting here in the infusion chair and I am falling asleep. (not that I couldn't use the sleep, I'm just saying) I was out doing the yardwork this past weekend, and I couldn't even get through that without taking breaks. I work a desk job. I have a lot of mental tasks that go along with it, but it isn't even close to what you would think was a physically demanding job. Yet I find myself around 3pm everyday falling asleep at my desk. (good thing I don't take lunch till around then, I can close my office door and take a nap) .......
I have to stop this rant that I was going down. It doesn't help to bitch about it, and it doesn't fix anything, so I am going to stop wasting your time and mine. While yes, sometimes venting about emotional issues is a good thing, I find it to be a fruitless proposition that I don't like to get in to. (my doctor would tend to disagree with this...) I mean venting is a good thing and helps bring down stress levels and improves health and all that happy go lucky shit... but I feel bad venting about this.
I am a very fortunate being on this earth! I have a lovely wife, a great family, a roof over my head, food to eat, a great job that doesn't look like it's going anywhere anytime soon, and am up and mobile most of the time. Yes my health leaves something to be desired... but is that something to complain about? I am alive, I am moving, I am a productive member of society. Complaining about what's going wrong won't get me anywhere. Besides, you all have your own things to deal with without having mine piled on top.
I hope that you all are well, and that life has blessed you as much, if not more, than it has me. As always please feel free to reach out and contact me if you want to, I am always up for a good conversation.
Until we meet again.......
26 May 2009
Training has started... Let's hope I get in shape in time
So the good news is that my doctors have cleared me to start gradual training for the ride! After what seemed like a million x-rays, gallons of blood and days in the doctors offices, they tell me that I am not completely sick and should be able to tollerate training as long as I ease myself into it. That was the best news that I could have ever gotten from them. I have been kicking myself for the last couple years for not riding, and now I can actually make it happen.
Now the tuff part begins! Should be up for a couple longer training rides later next month... who's in?
Onto some different news. Late last week I put an update on my facebook that may have confused a few people. In it I said that I have had a lot of doctors that have told me a lot of information... but yet it is my newest one that scared me the most with what he had to say. I wanted to take a moment to let you all know what is happening and what it was that scares me.
I went in for a follow up with my GI last week, kind of an intermediate check-up with all the tests that have been happening and all the new medications that I have been on. It turns out that my Crohn's is a lot worse that any of us thought. After doing a Barium follow through and a ton of other x-rays and such, it seems that the disease has progressed into my small bowel much more than anyone had thought. This combined with the inflamation in my colon and the fistulas make things more complicated than he expected from what he thought things were. And that's not even the part that scares me.
During our conversation, he started talking about another doctor that he would like me to go see. This is nothing new to me, as I have been passed around from doctor to doctor before to get opinions or new views on a situation. It is why he is sending me to this person that scares me, and got my mind going a million miles an hour.
For the life of me, I can not remember what the doctor's name is. He is a professor at the UW and a GI that completely specializes in IBD. He is also the head of the research department when it comes to IBD and their clinical and drug trials. He's suppose to be the best in Washington when it comes to IBD and treatment and should know what can be done to help me out and possibly what drugs would work the best.
Why this scares me is more in my head than anything... but then again what's in your head leads a lot to how you feel and how you feel about getting better. Here's why it scares me. This guy is suppose to be the best in the state. My doctor wants to send me to him for care. This makes me think that either 1) my condition has become so advanced that he is the only one that can help me in the area or 2) this has become so complicated that this doctor doesn't think he can handle it. Do I think either is the case.... no, but those of you that have known me for a while know that I can take a situation and think of every possible outcome good or bad within about 30 seconds (that's one of the advantages that I have in my job... not so good for the personal life). So ever since he said that and told me how bad the Crohn's has gotten... my mind has been going a million miles an hour thinking of every possibility and what to do next. I have spent countless hours on the computer researching what all the possible outcomes are and trying to find out anything and everything about the drugs and such that are on the market or are coming up for approval, but nothing calms down my mind this time around. I think that a lot of it is that this time I'm married and have kids to think about now. For the longest time all I really had to think about was myself. I mean I had my family around me, but I wasn't living for someone else. That changes a lot in your mindset when you go from being single to being a family man. Now I can't think and talk about whats gonna get me to the next party... I have to think about what's gonna get me to my kids graduation and beyond. I never believed anyone that told me that marrage and kids change everything. Now I believe them. It's hard to even explain what's happened... but it's definately different.
Now the hard part begins. I am healthy enough to train and ride this year... but the disease is spreading... Hopefully I get some answers soon. If not... I will go into mental meltdown just from the overheating of the circuits. Hopefully that doesn't happen... my wife already has enough to deal with :D
Until next time... I will keep you all informed. Please hit me up if you got questions or just want to chat
-Daniel
Now the tuff part begins! Should be up for a couple longer training rides later next month... who's in?
Onto some different news. Late last week I put an update on my facebook that may have confused a few people. In it I said that I have had a lot of doctors that have told me a lot of information... but yet it is my newest one that scared me the most with what he had to say. I wanted to take a moment to let you all know what is happening and what it was that scares me.
I went in for a follow up with my GI last week, kind of an intermediate check-up with all the tests that have been happening and all the new medications that I have been on. It turns out that my Crohn's is a lot worse that any of us thought. After doing a Barium follow through and a ton of other x-rays and such, it seems that the disease has progressed into my small bowel much more than anyone had thought. This combined with the inflamation in my colon and the fistulas make things more complicated than he expected from what he thought things were. And that's not even the part that scares me.
During our conversation, he started talking about another doctor that he would like me to go see. This is nothing new to me, as I have been passed around from doctor to doctor before to get opinions or new views on a situation. It is why he is sending me to this person that scares me, and got my mind going a million miles an hour.
For the life of me, I can not remember what the doctor's name is. He is a professor at the UW and a GI that completely specializes in IBD. He is also the head of the research department when it comes to IBD and their clinical and drug trials. He's suppose to be the best in Washington when it comes to IBD and treatment and should know what can be done to help me out and possibly what drugs would work the best.
Why this scares me is more in my head than anything... but then again what's in your head leads a lot to how you feel and how you feel about getting better. Here's why it scares me. This guy is suppose to be the best in the state. My doctor wants to send me to him for care. This makes me think that either 1) my condition has become so advanced that he is the only one that can help me in the area or 2) this has become so complicated that this doctor doesn't think he can handle it. Do I think either is the case.... no, but those of you that have known me for a while know that I can take a situation and think of every possible outcome good or bad within about 30 seconds (that's one of the advantages that I have in my job... not so good for the personal life). So ever since he said that and told me how bad the Crohn's has gotten... my mind has been going a million miles an hour thinking of every possibility and what to do next. I have spent countless hours on the computer researching what all the possible outcomes are and trying to find out anything and everything about the drugs and such that are on the market or are coming up for approval, but nothing calms down my mind this time around. I think that a lot of it is that this time I'm married and have kids to think about now. For the longest time all I really had to think about was myself. I mean I had my family around me, but I wasn't living for someone else. That changes a lot in your mindset when you go from being single to being a family man. Now I can't think and talk about whats gonna get me to the next party... I have to think about what's gonna get me to my kids graduation and beyond. I never believed anyone that told me that marrage and kids change everything. Now I believe them. It's hard to even explain what's happened... but it's definately different.
Now the hard part begins. I am healthy enough to train and ride this year... but the disease is spreading... Hopefully I get some answers soon. If not... I will go into mental meltdown just from the overheating of the circuits. Hopefully that doesn't happen... my wife already has enough to deal with :D
Until next time... I will keep you all informed. Please hit me up if you got questions or just want to chat
-Daniel
18 May 2009
Another Week Closer... I will Ride this year
Another week passes... and we get another week closer to the ride. I'm starting to get a litttle nervous that I will not be able to complete my training as much as I would like to.
So today it was back at the doctors... but this time it was to see my GP for a physical and to get a couple of minor complaints looked at. I also needed to talk to him about my training for this ride and see if I could get his blessing to continue...
I didn't get it yet... but I think that I will be getting it soon. He ordered more x-rays to see what is happening with my knee and back, and as long as those come back clean he'll clear me to ride. Now I just hope that it all comes back clean so I can get back on the bike again! It's been really hard to put this on hold waiting for the doctors to get back to me.
This is my 3rd year working with GYGIG. The first year that I worked with them was the 2nd ride in Seattle. I found out about the ride way too late to try and train for it, so I immediately signed on to crew. That year I was hooked. It ranks as one of my most cherished memories ever. I wasn't doing too well going into that weekend. Stress had taken my body for a spin and I was trying to just push through. Fortunately for me everyone around me knew what was happening... they had see it too many times before. Having so many people around me supporting me, knowing what it is that I was going through and what they could do to help... it was an experience that I will never forget. I had been living with Crohn's for 4 years at that point and had NEVER had anyone know what was happening or what they could do outside of my doctors. From that moment on I was comitted to helping GYGIG and the community out in any way possible.
Year 2 rolls around and I want to ride. I start thinking about the training that would be required... and I find myself in the hospital. It was not a good start to the year. A flair up had completely decimated my body so I needed some time to let it recover and find out what damage was done. This completely took me out of the running for riding again. Once again I stepped up and still helped out where I could... but I kicked myself mentally all year for not being able to ride.
So sign ups started for this years' ride... and I was ABSOLUTELY DETERMINED that I was going to ride! I was not going to let my body do this to me again! Well in October I had to spend some time in the hospital again, this time it wasn't Crohn's related. I had a MRSA infection in my forehead that, when I went to get it taken care of, decided it wanted to start rapidly spreading throughout my face. Well after a Billion different anitbiotics, surgery to remove the infected tissue, and hospital time, it all took it's toll on my body again and I was back in the hospital for a flair a couple of months later. (why so long after.... I'm an idiot) I immediately started doing EVERYTHING that I could think of to get myself ready to ride. I started following a stricter diet, started playing soccer again (I'm a keeper so it's not a heavy workout for me but it was getting me back into moving again), and started doing everything that would put me in a position to be back on a bike in time to train. Thinks were looking like they are on track until I had to start looking into some other problems that I was having.
So right now I am in a holding pattern. I am still doing little things to try and get my body in a better position when the time comes that they release me to ride again. I will figure out a way to make it happen. Talking with my family over the weekend... they gave me a great idea.
This isn't a race... It's a Ride. It's a ride that'll raise a lot of awareness and needed funds for the Crohn's and UC communities. It's a ride that will allow me to prove to myself that this disease will not hold me back. It is a ride that will allow me to connect deeper into the community and help others that may be struggling with these diseases.
I will ride this year... even if all I can do is 20 miles a day... I will ride! I will not allow this disease to win again!
I thank you all for your support through this very difficult time in my life. I appreciate all of you immensly and hope that I will have the time to thank you all personally for all that you have done.
Until the next time...
Daniel
So today it was back at the doctors... but this time it was to see my GP for a physical and to get a couple of minor complaints looked at. I also needed to talk to him about my training for this ride and see if I could get his blessing to continue...
I didn't get it yet... but I think that I will be getting it soon. He ordered more x-rays to see what is happening with my knee and back, and as long as those come back clean he'll clear me to ride. Now I just hope that it all comes back clean so I can get back on the bike again! It's been really hard to put this on hold waiting for the doctors to get back to me.
This is my 3rd year working with GYGIG. The first year that I worked with them was the 2nd ride in Seattle. I found out about the ride way too late to try and train for it, so I immediately signed on to crew. That year I was hooked. It ranks as one of my most cherished memories ever. I wasn't doing too well going into that weekend. Stress had taken my body for a spin and I was trying to just push through. Fortunately for me everyone around me knew what was happening... they had see it too many times before. Having so many people around me supporting me, knowing what it is that I was going through and what they could do to help... it was an experience that I will never forget. I had been living with Crohn's for 4 years at that point and had NEVER had anyone know what was happening or what they could do outside of my doctors. From that moment on I was comitted to helping GYGIG and the community out in any way possible.
Year 2 rolls around and I want to ride. I start thinking about the training that would be required... and I find myself in the hospital. It was not a good start to the year. A flair up had completely decimated my body so I needed some time to let it recover and find out what damage was done. This completely took me out of the running for riding again. Once again I stepped up and still helped out where I could... but I kicked myself mentally all year for not being able to ride.
So sign ups started for this years' ride... and I was ABSOLUTELY DETERMINED that I was going to ride! I was not going to let my body do this to me again! Well in October I had to spend some time in the hospital again, this time it wasn't Crohn's related. I had a MRSA infection in my forehead that, when I went to get it taken care of, decided it wanted to start rapidly spreading throughout my face. Well after a Billion different anitbiotics, surgery to remove the infected tissue, and hospital time, it all took it's toll on my body again and I was back in the hospital for a flair a couple of months later. (why so long after.... I'm an idiot) I immediately started doing EVERYTHING that I could think of to get myself ready to ride. I started following a stricter diet, started playing soccer again (I'm a keeper so it's not a heavy workout for me but it was getting me back into moving again), and started doing everything that would put me in a position to be back on a bike in time to train. Thinks were looking like they are on track until I had to start looking into some other problems that I was having.
So right now I am in a holding pattern. I am still doing little things to try and get my body in a better position when the time comes that they release me to ride again. I will figure out a way to make it happen. Talking with my family over the weekend... they gave me a great idea.
This isn't a race... It's a Ride. It's a ride that'll raise a lot of awareness and needed funds for the Crohn's and UC communities. It's a ride that will allow me to prove to myself that this disease will not hold me back. It is a ride that will allow me to connect deeper into the community and help others that may be struggling with these diseases.
I will ride this year... even if all I can do is 20 miles a day... I will ride! I will not allow this disease to win again!
I thank you all for your support through this very difficult time in my life. I appreciate all of you immensly and hope that I will have the time to thank you all personally for all that you have done.
Until the next time...
Daniel
12 May 2009
Sitting Around The Radiologists
So a lot has decided to happen all in the last couple of months, and my ability to actually ride this year is in question. I know some people may be in the loop on what is happening... but for those that don't know, here's an update.
I started seeing a new GI a couple weeks back as I felt it was time to get a second set of eyes on my condition as nothing seemed to be improving despite our best efforts. So I started searching and found one that came highly recommended. From the start he impressed me, asking a lot of questions and taking a lot of notes on everything before making any sort of assumption or suggestion. He is also very direct with what he has to say and doesn't sugar coat the news, which I appreciate as I am like that myself.
Here's the news as it stands right now. He thinks that my colon has got to go. He thinks that some form of a ostomy will be required and that this all needs to happen within the next year. Although I am not happy to have heard that being that I am only 26, I am pleased that he would just tell it to me like it is. I have to say that I am scared at the prospect of major surgery at 26, but if it is what is going to get me to live 20+years from now then that is what I need to do.
So I am sitting around the radiologists office, having to do the Oh so fun Barium milkshake test and waiting for it all to move through my bowels. 6 hours is what it took today. Nothing I can do at that point except sit around and wait and wait and wait.......
Not very good news from what I saw, although I didn't get to see the full report that they are sending to my GI. Just from what I saw there are a couple of places where my intestine is narrower than it should be and a couple of places that look like fistulas going off into nowhere.
Now the waiting game begins. Until I hear from my GI, I was asked to put my training on hold. I am getting a full physical next week with a stress test and then after all of this I will see my GI again. Hopefully when I see him he will have answers for me.
Hopefully they tell me that I can ride this year. Untill then I will continue to do what I can to get myself in a position to ride.
Got questions? Email me djquixotic@gmail.com
Until next time
I started seeing a new GI a couple weeks back as I felt it was time to get a second set of eyes on my condition as nothing seemed to be improving despite our best efforts. So I started searching and found one that came highly recommended. From the start he impressed me, asking a lot of questions and taking a lot of notes on everything before making any sort of assumption or suggestion. He is also very direct with what he has to say and doesn't sugar coat the news, which I appreciate as I am like that myself.
Here's the news as it stands right now. He thinks that my colon has got to go. He thinks that some form of a ostomy will be required and that this all needs to happen within the next year. Although I am not happy to have heard that being that I am only 26, I am pleased that he would just tell it to me like it is. I have to say that I am scared at the prospect of major surgery at 26, but if it is what is going to get me to live 20+years from now then that is what I need to do.
So I am sitting around the radiologists office, having to do the Oh so fun Barium milkshake test and waiting for it all to move through my bowels. 6 hours is what it took today. Nothing I can do at that point except sit around and wait and wait and wait.......
Not very good news from what I saw, although I didn't get to see the full report that they are sending to my GI. Just from what I saw there are a couple of places where my intestine is narrower than it should be and a couple of places that look like fistulas going off into nowhere.
Now the waiting game begins. Until I hear from my GI, I was asked to put my training on hold. I am getting a full physical next week with a stress test and then after all of this I will see my GI again. Hopefully when I see him he will have answers for me.
Hopefully they tell me that I can ride this year. Untill then I will continue to do what I can to get myself in a position to ride.
Got questions? Email me djquixotic@gmail.com
Until next time
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