I write this post from the perspective of someone who has been blessed with good health for more than six years. I am extremely grateful for the research and discoveries of the last ten years which have made it possible for me to live a normal, active life with Crohn's Disease. My last post I talked about venting and how difficult it was to try and balance a very busy schedule with my need to get Remicade and how a mishap with receiving my medication put me in a vulnerable position. I was feeling considerable discomfort and fatigue because I got off my eight-week routine, and also the mental and emotional anxiety of knowing what happens if I get out of remission. I was feeling the stress of my work and my family and the stress of knowing that being stressed contributes to getting out of remission.
Last Sunday I had probably the best run of my life. I felt so good. Monty (my golden retriever training buddy) and I hit the road near my home on a beautiful (finally) sunny day and we just ran and ran. I made it six miles in 63 minutes...not only a great time for me, but a great validation that what I am doing in trying to get ready for this half marathon in July is working! I felt like I could have even gone further. I didn't hurt. I didn't feel any stress or anxiety. I felt warm sunshine, God's love, the strength of my resolve and the pride of my family.
Tuesday I was in near panic attack mode when I received a call that my remicade was again being delayed. All the joy and the hope I felt went right out the door in about two seconds. I knew I needed my medicine. I need to travel to another town to get my infusion and between the travel and the infusion itself, I need a full day off. I had the day booked. I needed my infusion!
The issue got resolved and my medication arrived. Wednesday I received my infusion. I had to step back from the training program just a bit as the infusion leaves me pretty exhausted. I took the day off and got some rest in the evening. THursday and Friday I had a big meeting at work that went off without a hitch. I love working with the group and always feel refreshed just being in their midst. By Friday afternoon, I was back on track feeling like everything was going to be okay.
This is kind of the roller coaster of chronic illness. On the one hand, the reality is that certain care is necessary; every day there must be an awareness and a recognition, a level of respect given to the disease to do everything possible to stay in remission, and even then there is a chance that you won't....yet every day, one must fight to not let the disease take over what matters. It is a tight rope act and sometimes I slip. But the key is to get back up and get going.
I am absolutely convinced that Remicade and my other medications - 6MP and prevacid, as well as the exercise, the knowledge and support of CCFA and my doctor - Tim Johnson and his nurse Kim , have given me my life back. Because of the research that has been done and is ongoing, I can work full-time and referree my daughters soccers games and play football with my son. I can train honestly for a half marathon! There was a day when walking to the restroom was a chore. The first 5K I ran after my surgeries will always be one of my life's greatest accomplishments.
Because of the research and the tireless efforts of scientists working to discover better ways for treating Crohns and colitis and ultimately finding a cure, my son Dylan, who has still not been diagnosed, but definitley has GI complications, may not need to deal with hospitalizations and consequences including isolation from peers, financial instability and inability to work. My brother Kody will be able to reclaim his life - his ability to hold down a career he loves and play with his daughters. I may never again have to worry that a bumbled prescription delivery could put me in the hospital.
I am asking for your help, again, to fund this research. Please log on to my funding page and give generously. I know that money is tight for everyone, but I also know that this is a way to truly make a difference. At least 80% of on the dollar will go to this research and will put us one day closer to a cure. Every penny counts.
Thanks
jd
My world!
Homecoming Princess and Football Star
Sunday, May 4, 2008
Thursday, April 24, 2008
Venting
Sometimes I think all I need to do to feel better is to vent a little and get it out of my system. After posting the other day I did a couple of things that have been pretty good for my overall attitude. First, I had my annual exam with the OBGYN. It may seem odd, but it made me feel so much better to have my concerns about my health validated, and explored. We'll do a couple of tests to be sure everything is okay and I won't have to worry any more. That is such a good thing. For any of you who have had a rough time with health - whether its crohns or some odd feeling here or there, it is always so much better to get it checked quickly and avoid anxiety. MOst the time, its nothing, and if it happens to be something, at least you caught it early and its probably going to be easier to deal with.
I also decided that I was going to follow the training from CCFA as a top priority, rain or shine. I was going to picture myself on the streets of NAPA making my goal a reality and I was going to like it. Well, guess what... Last night I had a great run. I got a late start but Monty and I drove a five mile route and then i just decided I was going to do it and like it, and I did. I felt great, managed to finish in 55 minutes and 40 seconds and exceeded my expectations. I finished in the twilight with a light rain and feeling like a million bucks.
This morning I woke up in the cold and snow and decided straight away that I would fit in a workout at the gym, regardless of how busy work got and that was just the way it was going to be. So I did! I got my four miles in on the treadmill, picturing myself in sunny California, in shape and looking good. I didn't "race" really and finished my four miles in 43 minutes - an improvement in my pace of the day before. I am officially back on track!
Of course, since I took time at the gym instead of working, I'm sitting here at 9:00 with a couple of projects left to do... but I know that they'll come out better and probably take less time than if I had made myself sit at my desk and felt bad cause I wasn't getting in a work out.
SO the moral of this post...JUST DO IT!! If you have to pout, do it and then get on with the good stuff. There is too much good in life to waste time feeling gloomy.
Have a great evening and go get your goals. You CAN do it!
I also decided that I was going to follow the training from CCFA as a top priority, rain or shine. I was going to picture myself on the streets of NAPA making my goal a reality and I was going to like it. Well, guess what... Last night I had a great run. I got a late start but Monty and I drove a five mile route and then i just decided I was going to do it and like it, and I did. I felt great, managed to finish in 55 minutes and 40 seconds and exceeded my expectations. I finished in the twilight with a light rain and feeling like a million bucks.
This morning I woke up in the cold and snow and decided straight away that I would fit in a workout at the gym, regardless of how busy work got and that was just the way it was going to be. So I did! I got my four miles in on the treadmill, picturing myself in sunny California, in shape and looking good. I didn't "race" really and finished my four miles in 43 minutes - an improvement in my pace of the day before. I am officially back on track!
Of course, since I took time at the gym instead of working, I'm sitting here at 9:00 with a couple of projects left to do... but I know that they'll come out better and probably take less time than if I had made myself sit at my desk and felt bad cause I wasn't getting in a work out.
SO the moral of this post...JUST DO IT!! If you have to pout, do it and then get on with the good stuff. There is too much good in life to waste time feeling gloomy.
Have a great evening and go get your goals. You CAN do it!
Wednesday, April 23, 2008
delay
Good morning,
Just checking in to let you know how I'm doing. The last week and a half or so have been kind of rough. I normally have my Remicade infusions every eight weeks and by the last week or two I'm pretty tired, a little gassy and have some general soreness. I just don't feel great, but not necessary "bad". I was to have had my infusion on April 2, but it didn't arrive in the mail so I had to push it back. April is a killer month for me at work and because I need a whole day off to get my infusion, I wasn't able to reschedule until next week. I'm really physically exhausted. It's a strong reminder that just because I'm able to function pretty normally, and I've had a long period of remission...I'm not normal. I need regular "care" for lack of a better word.
In my training I was up to about 50 minutes pretty smoothly, and was getting in regular 5k's at about 30 minutes. My "fast" miles were under 9 minutes. I know that isn't great in a general sense, but for me and for not having worked out for awhile up until February, it was pretty good. This last week plus has been painful because to get my 10 minute miles I feel like I'm completely exerted. In addition, our weather has turned again so we've had snow, cold rain, wind...yuck. So, today I'm actually asking for your prayers. This is one of those times where though I know I have choices, sometimes none of the choices really seem that great. I could just miss a day of work and get my treatment sooner, possibly staving off getting sicker but absolutely putting some big signature kind of projects in jeopardy. Or, I can try to slow down, get in a little more rest, focus on my projects and try to hang on to my hat until next Tuesday. The latter is my choice because my work means so much to me and I'm trying so hard to make a name for myself in my new role as assistant director of public relations. I love MSU and I really believe in some of my ideas...I can't just leave them hanging. And,I'm not doing THAT badly... Like I said, it isn't that I feel horrible, I just don't feel good.
I guess its a good reminder to appreciate the days when I do. THanks for checking in and happy trails. As always, I appreciate your support. Please log onto my fundraising page and give as generously as you can.
Jodie
Just checking in to let you know how I'm doing. The last week and a half or so have been kind of rough. I normally have my Remicade infusions every eight weeks and by the last week or two I'm pretty tired, a little gassy and have some general soreness. I just don't feel great, but not necessary "bad". I was to have had my infusion on April 2, but it didn't arrive in the mail so I had to push it back. April is a killer month for me at work and because I need a whole day off to get my infusion, I wasn't able to reschedule until next week. I'm really physically exhausted. It's a strong reminder that just because I'm able to function pretty normally, and I've had a long period of remission...I'm not normal. I need regular "care" for lack of a better word.
In my training I was up to about 50 minutes pretty smoothly, and was getting in regular 5k's at about 30 minutes. My "fast" miles were under 9 minutes. I know that isn't great in a general sense, but for me and for not having worked out for awhile up until February, it was pretty good. This last week plus has been painful because to get my 10 minute miles I feel like I'm completely exerted. In addition, our weather has turned again so we've had snow, cold rain, wind...yuck. So, today I'm actually asking for your prayers. This is one of those times where though I know I have choices, sometimes none of the choices really seem that great. I could just miss a day of work and get my treatment sooner, possibly staving off getting sicker but absolutely putting some big signature kind of projects in jeopardy. Or, I can try to slow down, get in a little more rest, focus on my projects and try to hang on to my hat until next Tuesday. The latter is my choice because my work means so much to me and I'm trying so hard to make a name for myself in my new role as assistant director of public relations. I love MSU and I really believe in some of my ideas...I can't just leave them hanging. And,I'm not doing THAT badly... Like I said, it isn't that I feel horrible, I just don't feel good.
I guess its a good reminder to appreciate the days when I do. THanks for checking in and happy trails. As always, I appreciate your support. Please log onto my fundraising page and give as generously as you can.
Jodie
Wednesday, April 16, 2008
Jackie
Howdy, once again time has flown by... This post is in honor of Jackie who turned 14 on Monday. She is my April baby, full of Aries passion and vigor. It was when I was pregnant with Jackie that Crohn's first reared its ugly head in my life. I'm convinced that there is a link, as the two times that my Crohn's has raged out of control have been during and after having babies! Lest you think i'm complaining or registering any regret, I want to say without reservation or hesitation of any kind that I would go through it all again, times a million, to have my kids. They are the reason that I get up in the morning when things are gloomy, the reason that when I look at the world, the glass is ALWAYS half full, or more. Jackie and Dylan make my heart sing. It's on odd thing really, but honestly I think pretty common that our most difficult times in life often are right in partnership with the best parts of our life. As much as Crohns has complicated things for me and my family, it has also brought me to a peace with myself that I didn't have when I took each day for granted. It has given me patience (yes, I do have SOME patience) and helped me to stop and smell the roses. The truth is that I am who I am because of ALL my experiences and those days when EVERYTHING was hard, even breathing - and walking to the restroom was an incredible effort, make the days like today....when I feel fine but am tired of the wet, cold weather and a little grumpy because of all the work that i have piling up and because I haven't found time to run in two days....seem pretty good. I'm FORTUNATE to have a job that I love and a busy family life and to be WELL enough to go for a run. In truth I think I may be one of the luckiest people in the world. My daughter Jackie reminds me of that every day - just by being her. She is the "well" one and sometimes gets lost in the GI issues that Dylan has had over the past couple of years and before that all of his hearing and throat issues. I just wanted to post today about how much I value her and everything that she is. Her fiery passion for life, her commitment and devotion to the people and things she loves, her sense of humor - even her fears and her failures. She is the perfect daughter for me. THANK YOU, JACKIE!!!
Now, time is starting to wind down on me so I have to ask again, please help, if you can to raise the money we need to cure Crohns and Colitis. WHile it is absolutely a part of who I am, and Ithink I was meant to have it...I also think part of my mission in life - my purpose from God, is to help eradicate it from our planet. PLEASE give generously, every dime counts.
THanks and good night.... go hug your kids!!
jd
Now, time is starting to wind down on me so I have to ask again, please help, if you can to raise the money we need to cure Crohns and Colitis. WHile it is absolutely a part of who I am, and Ithink I was meant to have it...I also think part of my mission in life - my purpose from God, is to help eradicate it from our planet. PLEASE give generously, every dime counts.
THanks and good night.... go hug your kids!!
jd
Monday, March 31, 2008
Surgery Day for Kody
Hi all, Sorry for the long delay in posting. I promise to do better. Training is going well. I'm getting a good base level of fitness. The Crohns & Colitis Foundation's official training for the 1/2 marathon begins tomorrow. I'm looking forward to having my team, the "National Team," to help motivate me in terms of increasing my volume and efforts of fundraising, awareness and miles.
The big news for today is Kody's surgery. We have all been on pins and needles waiting for this day to come. Many of you know that he has had a very serious flare of Crohns for more than the past year and has twice been in extremely dangerous, life threatening situations. Just after Thanksgiving he was sent to Denver for treatment by specialists. They put him on a PIC line for TPN nutrition and sent him home on a careful plan to help him build up his strength, bulk up and get ready for major surgery. Despite some complications along the way, everything seems to have gone as planned. At 6'7 Kody's weight got as low as about 140. The TPN and medicine regime helped him to gain over 40 lbs of real body weight. He had more color and more energy last weekend when I saw him over Easter than he has had in probably 10 years. Still, he had four drains in his abdomen, the feeding tube, a PIC line.... but he was better than he has been...pretty crazy.
Anyway, surgery today lasted about six hours. They had predicted it would be between 3 and 8. Since he went in at 8:00 I was pretty anxious when 3:00 rolled around and I hadn't heard. But it turns out they didn't actually get started until around 9:30. Anyway, the surgeons didn't encounter anything they didn't expect. They worked slowly and felt like they were able to get Kody fixed up pretty well. I may end up amending this later, but my understanding is that they were able to fully fix one major fistula and repair the bladder independently. They removed a total of about 2 ft of bowel including the terminal ileum, ileal cecal valve and about five inches of colon. They were able to resect with no complications. He lost about four courts of blood so they transfused three courts and have him sedated with a respirator and fluids to try to slow his heart rate down a bit and get him through the next couple days. He'll be in ICU for a day or two. All told, the surgeons seem to have done a great job.
I had a similar surgery in 2oo1. I won't lie, the healing was pretty rough. However, the surgery was the beginning of a new life for me. That, along with a great doctor and staff, some naturopathic things AND some research breakthroughs have allowed me to be pretty well overall. Please pray for Kody to have a similar experience. He has been in so much pain and had so many truly debilitating side effects and complications over the last two years that he can't even remember what its like to be pain free or to be able to run and play with his beautiful children. This disease can be so cruel, robbing a person of his humanity in so many ways. All the prayers you can muster are truly appreciated.
Please pray also for research into this horrible disease to continue and grow so that SOON there will be a cure! I'm proof that good things have been accomplished in the past decade. Let's hope and pray, and work as hard as we can to make sure the progress continues!
THANK YOU for all of your efforts,
jd
The big news for today is Kody's surgery. We have all been on pins and needles waiting for this day to come. Many of you know that he has had a very serious flare of Crohns for more than the past year and has twice been in extremely dangerous, life threatening situations. Just after Thanksgiving he was sent to Denver for treatment by specialists. They put him on a PIC line for TPN nutrition and sent him home on a careful plan to help him build up his strength, bulk up and get ready for major surgery. Despite some complications along the way, everything seems to have gone as planned. At 6'7 Kody's weight got as low as about 140. The TPN and medicine regime helped him to gain over 40 lbs of real body weight. He had more color and more energy last weekend when I saw him over Easter than he has had in probably 10 years. Still, he had four drains in his abdomen, the feeding tube, a PIC line.... but he was better than he has been...pretty crazy.
Anyway, surgery today lasted about six hours. They had predicted it would be between 3 and 8. Since he went in at 8:00 I was pretty anxious when 3:00 rolled around and I hadn't heard. But it turns out they didn't actually get started until around 9:30. Anyway, the surgeons didn't encounter anything they didn't expect. They worked slowly and felt like they were able to get Kody fixed up pretty well. I may end up amending this later, but my understanding is that they were able to fully fix one major fistula and repair the bladder independently. They removed a total of about 2 ft of bowel including the terminal ileum, ileal cecal valve and about five inches of colon. They were able to resect with no complications. He lost about four courts of blood so they transfused three courts and have him sedated with a respirator and fluids to try to slow his heart rate down a bit and get him through the next couple days. He'll be in ICU for a day or two. All told, the surgeons seem to have done a great job.
I had a similar surgery in 2oo1. I won't lie, the healing was pretty rough. However, the surgery was the beginning of a new life for me. That, along with a great doctor and staff, some naturopathic things AND some research breakthroughs have allowed me to be pretty well overall. Please pray for Kody to have a similar experience. He has been in so much pain and had so many truly debilitating side effects and complications over the last two years that he can't even remember what its like to be pain free or to be able to run and play with his beautiful children. This disease can be so cruel, robbing a person of his humanity in so many ways. All the prayers you can muster are truly appreciated.
Please pray also for research into this horrible disease to continue and grow so that SOON there will be a cure! I'm proof that good things have been accomplished in the past decade. Let's hope and pray, and work as hard as we can to make sure the progress continues!
THANK YOU for all of your efforts,
jd
Sunday, March 23, 2008
Kody signing in Happy Easter
Well let's see, this is the first time i have ever blogged. Anyway I am currently back in the hospital, thanks to a staff infection of my pick line. Being 8 day's away from my scheduled surgery on th 31st of March I think I will probably end up staying here until then. I'm gaining wieght at a good rate and although my albulan level is a little low everything seems to be a go for a succesfull surgery. Hope all goes well and the healing is quick, let you know. later!!
Friday, March 7, 2008
Movin' Along
I'm proud to say that this has been a good week. Everyone is well and we are back on track. Sunday the kids and I went to the gym and shot baskets for a little over an hour and played some one-on-one. Monday I did the DOS workout, Tuesday I jogged for thirty minutes and felt great! Wednesday I rested my sore muscles and yesterday I did 10 minutes on the stepper, stretched really good and did another 30 minute jog - making it further than I did on Tuesday. Today I'll do the DOS workout again and tomorrow rest - hopefully go for a long walk or something. I feel good. It is nice to be moving again and I think Spring being on the horizon is helping alot. I'm actually itching to get on the trails. If you knew me when I was a kid you probably don't believe it, but I really and truly love to run on the trails around Bozeman. I feel so free and the stress and anxiety that can come from life just fades away.
Kody is getting closer to the surgery date and while his weight has increased and his overall strength seems considerably improved, he still has some concerns with numbers (albumin) so please pray for him. Kayla is having a great Medieval Festival at a school and he is so excited for her big day. I so wish I was closer to them so that I could enjoy the event with them. But, at least Mom and Dad and Julianne and Brody are there to help with preparations and enjoy the day. I'm really happy for Kayla and Tonii to have such a positive thing on the horizon. It can make all the difference.
Anyway, thanks for the support and have a great day.
Kody is getting closer to the surgery date and while his weight has increased and his overall strength seems considerably improved, he still has some concerns with numbers (albumin) so please pray for him. Kayla is having a great Medieval Festival at a school and he is so excited for her big day. I so wish I was closer to them so that I could enjoy the event with them. But, at least Mom and Dad and Julianne and Brody are there to help with preparations and enjoy the day. I'm really happy for Kayla and Tonii to have such a positive thing on the horizon. It can make all the difference.
Anyway, thanks for the support and have a great day.
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