Okay everyone, I'm supposed to be the mentor...the one lifting others up...so I'm going to try and turn this around and make it a positive.
I am very lucky to have a good working relationship with my insurance group. Our director of benefits for the university system is a wizard. If he had a role in the national health care system, it would be in good hands. Honestly, he thinks out of the box, he considers expenses to the plan and the patient, evaluates potential efficiencies of resources including the time and family issues of the patient and creates very sound fiscal and human options for our members. He's a genius. Because of him, all my insurance issues were resolved and I was able to get my Remicade Friday - in Bozeman - with zero copay. The plan paid less, I didn't have to drive 90 miles for my treatment and my finances didn't take a hit. Win, win.
I was late getting this treatment, largely because of life happening and a lot of the happenings were really good...but I'm paying for it. When I went in for my infusion I had a fever - and I've been feeling Crohnsy for a couple weeks...low right quadrant pain, general soreness and fatigue, feverish, diarrhea (which is actually weird for me, but we can discuss that later). It's just tough right now. Work is super busy - last week was kind of the culmination so this week should be a little better; my family life is in a bit of a tough spot, and I'm still trying to save my house.
I mention this here only because it affects my overall stress load significantly and though Crohn's is certainly not caused by stress, we all know that when we are in a bout, stress seems to complicate things. Anyway, I found a bank willing to do a new appraisal for no cost to me, so that is something to maybe look forward to... I've been jerked around so much over a new mortgage for the last year that I'm not willing to get too excited about it just yet..but at least there is some miniscule amount of hope there.
So how is all this positive, well - I did get my infusion and I"m sure that it will help get me back to feeling good soon. I'm going on my low fiber low residue diet for awhile at least and will really be concentrating on listening to my body. I've been here before and I'll get through it. I"m super happy actually to have Team Challenge...there is a built in support group there and it means a lot. Maybe some of my teammates can find strength in knowing that we all have struggles and we'll get through them together. I haven't run in five days...which is a huge bummer for the spirit as much as anything. Two of those days I got some good exercise, just not running, but the last three I"ve been pretty much laid up. I'm going to take a walk later and see how that goes - getting outside always seems to be a big help. I see my GI on Tuesday so that will shed some light too. ONe thing I know, for me, is that exercise helps so I'll be back to running no later than Tuesday...as long as I can, I will.
SO I'm going to get going. Will rest up today, get the house and kids ready for school and work and be ready to tackle life with new zest come tomorrow!
Fight on, Team Challenge!
My world!
Homecoming Princess and Football Star
Sunday, August 30, 2009
Thursday, August 20, 2009
Nice meeting some teammates on call!
Had a great visit with some of the National Team on the weekly conference call last night. I get more excited about this event every day. We have a really great group. It was on the call when someone mentioned Remicade that I realized I am WAY late for my infusion...DANG IT!!! This summer has been so busy and flown by so fast that I literally forgot about it and for some reason my Dr. office which is usually great about keeping me on track if I faulter...hasn't called me either. So I'll be making that appointment asap. I'm sure that not having it is the reason that I've been so tired and sore lately. Part of the reason it isn't done now is that I started a new plan year and apparently my insurance company has decided that people with Reumitoid Arthritis should take Humira instead of Remicade and thus that Remicade won't be fully covered any longer. I need to get them to understand that A) I don't have RA!!!! that isn't the only use for Remicade and B) there is medical evidence that suggests that switching BACK to Remicade after being off it for a period often renders it INEFFECTIVE C) there is NO medical reason for my switching a treatment that has helped me for years - ONLY a financial reason. D) if i try Humira and it DOESN"T work, there is a significant risk that REMICADE will no longer work either and THUS, my years of wellness could be seriously jeopardized by our CURRENT healthcare system. Now I don't want to get political here...my point is that ALREADY insurance and MONEY affects our healthcare...we need solutions and I'm not saying the government is the solution I'm just saying that anyone who thinks that insurance companies don't already make decisions about treatment - even at the anquish of physcians is crazy. It's always the bottom line. We need reform - not partisan reform...REFORM.
Anyway, after the call I went to the gym to run my 3 miles. It was really frustrating! First, I had no hair twisties in my locker...how in the world did that happen???!!!! I'll have to post a picture of my hair...lets just say if you can't tell from other photos - it's long and really thick and heavy. Running with it down instantly put a damper on the whole thing. It was super warm (90 degrees) and as noted above I've been feeling a little generally sluggish anyway. So I really took it easy and just got in the miles and called it done. I even walked part. I guess this is where we have to use our brain and not our heart. I really wanted to run...after the call I was even more amped up than ever for the training. It just wasn't to be. So I'm off now to fight with the insurance and stock my locker with twisties!!!
Good day to all!
jd
Anyway, after the call I went to the gym to run my 3 miles. It was really frustrating! First, I had no hair twisties in my locker...how in the world did that happen???!!!! I'll have to post a picture of my hair...lets just say if you can't tell from other photos - it's long and really thick and heavy. Running with it down instantly put a damper on the whole thing. It was super warm (90 degrees) and as noted above I've been feeling a little generally sluggish anyway. So I really took it easy and just got in the miles and called it done. I even walked part. I guess this is where we have to use our brain and not our heart. I really wanted to run...after the call I was even more amped up than ever for the training. It just wasn't to be. So I'm off now to fight with the insurance and stock my locker with twisties!!!
Good day to all!
jd
Tuesday, August 18, 2009
About me post for my new National Teammates...
Hi all you terrific TC teammates!
I’m totally fired up about Vegas and really looking forward to getting to know all of you. I thought I’d send a quick email about me – but I’ll be calling you all in the next few days, also.
I’m 38 years old and have had Crohn’s since I was 22. I have had two major episodes lasting about 10 years that had me in the hospital many, many times. I’ve had 3 surgeries – two resections and one fistula and have had other complications such as abscesses and lots of obstructions. That’s the bad news. The good news? I’ve been truly blessed with a terrific doctor and strong support system and have managed to find the “keys” to a long period of good health. I’ve been mostly well since 2003 with only pretty minor flairs and just one hospitalization. I feel really fortunate and that’s part of the reason that I got involved with CCFA…they are working every single day to make sure that others who have Crohns and Colitis can find their “keys”.
Another part of the reason I got involved with CCFA is that my brother was hit hard by the disease about 3 years ago. He has been completely debilitated for much of that time and it has been a huge struggle for him almost every one of those days. He’s doing much better now – though is still far from wellness. He is a single dad with two beautiful girls and it’s been heartbreaking for them all. I just couldn’t watch him go through all this without doing something and that’s the number one reason why I signed up for the Team Challenge Napa event in the summer of 2008. I guess it was a little selfish really… I needed to feel like I was helping.
The final piece of my motivation is my own 10 year old son. He has not been diagnosed with Crohns or Colitis, but has had digestive problems since he was born. We pray every day that he will just grow out of his issues (he was premature in part because of my illness). But if he does ultimately have this battle in front of him, I want there to be a cure. I know that CCFA is our best chance. The mom in me is pretty fierce.
So you can see that I have a lot of stake in CCFA and their ultimate success. It is extremely important to me and my family. That being said, the reason I signed up for Team Challenge Vegas 09, is because of the intensely positive experience that I had with Napa, and the offer to mentor those getting involved for the first time you!! I know that when I was first diagnosed and in those years where it completely turned my life upside down, I found great comfort in talking with others going through the same thing. I want to give back to everyone I can by sharing my story and most of all just being a good set of ears and a strong set of shoulders when needed. If any of you, or your families, ever need to vent about anything related to digestive illness, I’m here for you, truly. Call me anytime. My cell number is 406-209-0277.
Okay, so this is turning out to not be a brief introduction…but I might as well get it all out there. As much as Crohn’s has affected my life, it isn’t my life. I’m a very happy single mom. My daughter Jackie is 15 and will be a sophomore at Belgrade High this year. She is smart and beautiful and a really great kid. So far the teenage thing hasn’t been anything like everyone warned me it would be. My son Dylan is 10 and will be in 5th grade. He is also very smart – which is a blessing especially due to all the school he misses. They are both active in sports and other activities. I am in charge of public relations for Montana State University and really love my job. I get to do different things every day and there is always something new and exciting. I have a really great support system in my family and friends.
I love to run – but I’m not a “runner”. The CCFA training program is excellent. I never believed I would be able to actually run a whole half marathon…but I did! And I did it much faster than I imagined possible and enjoyed the entire race. My initial words of advice are to follow the schedule, whatever schedule you pick…including the rest days. I was warned about injuries etc happening if you push yourself too much in this kind of thing and I’m convinced that the rest days really were as important as the “hard” days in getting me to my goal. Seemed a little odd to me the first go round, but I’m convinced that it works!
The fundraising was and is really hard for me, especially now with the recession and so many friends and family out of work. But the thing to always come back to is that you aren’t asking for money for yourself….you’re trying to help hundreds and thousands of people who struggle in every way because of these diseases. And when we find a cure, the cost to all of us will be far less than what we have now – not just financially, but in all those moments that define your life and your happiness – your wellness, the small things like being able to walk along a beach or climb to a beautiful mountain waterfall… These are things Crohn’s took from me for a long time. Losing them, makes me appreciate them so much more now. This is why I am able to muster the courage to step out of my comfort zone and ask for help…I’m convinced it will make a big difference.
And finally, just before I went to Napa my local paper did an article about the race. I got a letter with a check in it in the mail from a woman that I had never met. She was in her 80’s and had suffered from Crohns her entire life. She wasn’t diagnosed properly until she was in her 60’s. She spent a lot of time in depression and hiding from the world. She didn’t talk about her disease…ever…until she wrote me that letter. She was giving me money that she didn’t have to give… because she wanted to help people in a way that she didn’t ever get helped. She wanted to help others avoid the sadness and pain that she endured. Her letter completely convinced me that raising awareness is just as important as raising money. You’ll find that when you talk to people, many know someone who is suffering or have been looking for someone to talk to themselves. Opening dialogue is huge. And, earlier when I said part of my reason for doing this was selfish, it made me feel better to DO something to help my brother…that goes for other people too. They want to help their brother or child or friend…and donating to this cause is a way they can do that.
Team Challenge was one of the most rewarding experiences of my life and I’m very happy to be along for the journey again with all of you. I have a blog that I’ll be updating and invite all of you to check it out. It actually chronicles my entire first attempt so you might find something there…it wasn’t always easy…but it was DEFINITELY worth it! www.kodyandjodie.blogspot.com I also have Facebook so if you have it too…friend me! You can search for me at Jodie Farmer DeLay and I’ll add you.
That’s all for now, sorry for being so wordy! I look forward to meeting you all.
Jodie
I’m totally fired up about Vegas and really looking forward to getting to know all of you. I thought I’d send a quick email about me – but I’ll be calling you all in the next few days, also.
I’m 38 years old and have had Crohn’s since I was 22. I have had two major episodes lasting about 10 years that had me in the hospital many, many times. I’ve had 3 surgeries – two resections and one fistula and have had other complications such as abscesses and lots of obstructions. That’s the bad news. The good news? I’ve been truly blessed with a terrific doctor and strong support system and have managed to find the “keys” to a long period of good health. I’ve been mostly well since 2003 with only pretty minor flairs and just one hospitalization. I feel really fortunate and that’s part of the reason that I got involved with CCFA…they are working every single day to make sure that others who have Crohns and Colitis can find their “keys”.
Another part of the reason I got involved with CCFA is that my brother was hit hard by the disease about 3 years ago. He has been completely debilitated for much of that time and it has been a huge struggle for him almost every one of those days. He’s doing much better now – though is still far from wellness. He is a single dad with two beautiful girls and it’s been heartbreaking for them all. I just couldn’t watch him go through all this without doing something and that’s the number one reason why I signed up for the Team Challenge Napa event in the summer of 2008. I guess it was a little selfish really… I needed to feel like I was helping.
The final piece of my motivation is my own 10 year old son. He has not been diagnosed with Crohns or Colitis, but has had digestive problems since he was born. We pray every day that he will just grow out of his issues (he was premature in part because of my illness). But if he does ultimately have this battle in front of him, I want there to be a cure. I know that CCFA is our best chance. The mom in me is pretty fierce.
So you can see that I have a lot of stake in CCFA and their ultimate success. It is extremely important to me and my family. That being said, the reason I signed up for Team Challenge Vegas 09, is because of the intensely positive experience that I had with Napa, and the offer to mentor those getting involved for the first time you!! I know that when I was first diagnosed and in those years where it completely turned my life upside down, I found great comfort in talking with others going through the same thing. I want to give back to everyone I can by sharing my story and most of all just being a good set of ears and a strong set of shoulders when needed. If any of you, or your families, ever need to vent about anything related to digestive illness, I’m here for you, truly. Call me anytime. My cell number is 406-209-0277.
Okay, so this is turning out to not be a brief introduction…but I might as well get it all out there. As much as Crohn’s has affected my life, it isn’t my life. I’m a very happy single mom. My daughter Jackie is 15 and will be a sophomore at Belgrade High this year. She is smart and beautiful and a really great kid. So far the teenage thing hasn’t been anything like everyone warned me it would be. My son Dylan is 10 and will be in 5th grade. He is also very smart – which is a blessing especially due to all the school he misses. They are both active in sports and other activities. I am in charge of public relations for Montana State University and really love my job. I get to do different things every day and there is always something new and exciting. I have a really great support system in my family and friends.
I love to run – but I’m not a “runner”. The CCFA training program is excellent. I never believed I would be able to actually run a whole half marathon…but I did! And I did it much faster than I imagined possible and enjoyed the entire race. My initial words of advice are to follow the schedule, whatever schedule you pick…including the rest days. I was warned about injuries etc happening if you push yourself too much in this kind of thing and I’m convinced that the rest days really were as important as the “hard” days in getting me to my goal. Seemed a little odd to me the first go round, but I’m convinced that it works!
The fundraising was and is really hard for me, especially now with the recession and so many friends and family out of work. But the thing to always come back to is that you aren’t asking for money for yourself….you’re trying to help hundreds and thousands of people who struggle in every way because of these diseases. And when we find a cure, the cost to all of us will be far less than what we have now – not just financially, but in all those moments that define your life and your happiness – your wellness, the small things like being able to walk along a beach or climb to a beautiful mountain waterfall… These are things Crohn’s took from me for a long time. Losing them, makes me appreciate them so much more now. This is why I am able to muster the courage to step out of my comfort zone and ask for help…I’m convinced it will make a big difference.
And finally, just before I went to Napa my local paper did an article about the race. I got a letter with a check in it in the mail from a woman that I had never met. She was in her 80’s and had suffered from Crohns her entire life. She wasn’t diagnosed properly until she was in her 60’s. She spent a lot of time in depression and hiding from the world. She didn’t talk about her disease…ever…until she wrote me that letter. She was giving me money that she didn’t have to give… because she wanted to help people in a way that she didn’t ever get helped. She wanted to help others avoid the sadness and pain that she endured. Her letter completely convinced me that raising awareness is just as important as raising money. You’ll find that when you talk to people, many know someone who is suffering or have been looking for someone to talk to themselves. Opening dialogue is huge. And, earlier when I said part of my reason for doing this was selfish, it made me feel better to DO something to help my brother…that goes for other people too. They want to help their brother or child or friend…and donating to this cause is a way they can do that.
Team Challenge was one of the most rewarding experiences of my life and I’m very happy to be along for the journey again with all of you. I have a blog that I’ll be updating and invite all of you to check it out. It actually chronicles my entire first attempt so you might find something there…it wasn’t always easy…but it was DEFINITELY worth it! www.kodyandjodie.blogspot.com I also have Facebook so if you have it too…friend me! You can search for me at Jodie Farmer DeLay and I’ll add you.
That’s all for now, sorry for being so wordy! I look forward to meeting you all.
Jodie
Thursday, August 13, 2009
Re-upped for another! Las Vegas here I come!
I'm VERY excited to be joining Team Challenge again for the 2009 Las Vegas Rock n Roll Half Marathon on December 6th. A million thanks to everyone who helped with the last journey - I'll need your help again, but there's no better cause!
I'm looking forward to being on the National Team again and providing all the support I can for my teammates. Can't wait for the training, the comaraderie, the fundraising and the LIFE CHANGING!! Look for more entries soon!
Jodie
I'm looking forward to being on the National Team again and providing all the support I can for my teammates. Can't wait for the training, the comaraderie, the fundraising and the LIFE CHANGING!! Look for more entries soon!
Jodie
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