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
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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