Thursday, December 25, 2008
Sunday, December 21, 2008
SO, my hubby and I are supposed to be in Arizona right now. But mother nature, well, she had another plan.
Wednesday, December 3, 2008
Thursday, October 2, 2008
I wrote this post this afternoon while I was getting my infusion at the hospital...
At the moment I’m in the hospital, at the ambulatory infusion center, sitting sandwiched between two women who have Crohn’s. The girl to my right was, like me, medically retired from the Navy due to the severity of her illness. The girl to my left has a port, is skinny as hell, and won’t eat much because as soon as she puts anything in her mouth she has to go to the bathroom. Today there are no chemo patients in my room; just Crohn's patients hoping that remicade, the "miracle drug," will aid us in claiming our health back.
The girl with the port was pretty bitter, and I can emphathize with her. Actually, I feel awful for her. I feel awful for anybody who is sick with cancer or an incurable illness. I feel awful for a lot of things, but her presence really threw me into an array of emotions.
When she walked in it was as if a dark cloud filled the room with gloom. My chest filled with the emotion of great sadness. The presence of that emotion overtook my body and for a brief moment I felt as though a foreign invader had taken my body over and was trying to throw me back into a bout of self pity, sadness, hopelessness, and whatever deep dark emotion one has. Maybe she reminded me of how awful the disease was. Maybe it was because she shamelessly stared as three nurses were working on my arms, trying to get a vein.
It could have been the fact that my veins no longer work properly and decide to roll or harden every time the prick of a needle pushes through my skin. Or the fact that four veins blew each time the needle was pushed into them. Or maybe that at that moment I was surrounded by others, just like me, who deal with the roller coaster of being sick again and again. Not knowing what each day is going to hold. The frustration of not having control. The frustration of completely giving up control and hoping for the best.
It was something, but I didn't let it win. I felt these awful emotions for a few minutes, but fought them off. I reminded myself how far I've come the past year. How strong I've gotten on my bike over the past few months. How I've refused to accept the fact that because I am ill I have to show it. Most people that meet me and don't know me will never know I am ill. I don't display my sickness on my chest like a scarlet letter. And so, I've won. Yet again. Little victories. But the struggle isn't over. It will never be over until I no longer have to get treatments and can come off of the toxic meds.
But I'm not alone. Everybody comes to the ambulatory infusion center for the exact same reason. Whether it be cancer or chronic illness, we all have one thing in common. The hope that our individual treatments, as toxic as it may be, will help us get better and allow us to return to normal life.
I will never forget the first time I came for my infusion a little over a year ago. I’m not sure what I was expecting, but I wasn’t expecting what I saw. I was introduced to a completely different world. The world of people, doing what they can, to merely stay alive. It’s one thing to hear that cancer patients need chemo to stay alive, but it’s a completely different story to sit side by side them and see first hand the emotional roller coaster they and their families go through when they are getting their treatment. It's also not very comforting to sit next to other Crohn's patients, in the same situation as you, just trying to get by. It's not comforting because I don't like to be reminded of how common this virtually unspoken disease is. Crohn's patients suffer in silence because they are embarrassed to tell people that they, as adults, can no longer control their bowels when flaring.
It was that day that I saw life in a completely different light. I saw what was truly important in life. An epiphany if you will. I realized that for years I had taken my health for granted, and at the same time was thankful that I have a chronic illness and not an advanced form of cancer. I got angry at healthy people who still take their health for granted and don't know how good they've got it. I was scared, speechless, shocked, and was overcome by sadness. This was the "other" part of life that most don't speak about. The part of life that, when it hits you and takes your health hostage, forces you to look back and kick yourself in the ass for not taking that vacation because you thought you didn't have enough time, not spending more time with your family, for spending too much time at work, for not taking that risk in fear of failing, etc etc
As I walked through the bare white hallway and peeked in each room I saw faces of fright, defeat, optimism, strength, and hope. Each face had a different story, a different personal struggle, a different illness they were trying to kick.
When I got to my room and sat in my chair I looked to the left and saw a mother getting chemo. This was her life. This was real life. Getting healthy had to be my mission. Getting healthy mattered. For all of us. All of us making ourselves sick with our toxic treatments so we can ultimately get better. Sacrificing for the greater good. We ever so desperately want back the healthy life we once took for granted.
It was at that moment that I realized that the only way I was going to survive and beat this beast of a disease was by digging down into the deep depths of my soul and seeing me for who I was. I realized that I had to take my life back, in one way or another, so I can live long and healthy...
And here I am, a little over a year later, all bruised up with nine needle marks and four blown veins in both arms. Though today was incredibly painful, sad, and emotionally draining, I still refuse to give up. I've come a long way, and have a long way to go.
Thursday, September 11, 2008
Sunday, September 7, 2008
Friday, August 29, 2008
Wednesday, August 20, 2008
Saturday, August 16, 2008
I’ve been in remission for two months! What can I say, I’ve been feeling great! AND something HUGE happened to me this week…talk about a dream come true! J-dub and a few other peeps know what I’m talking about…GET BETTER J-DUB! I’ll blog about it when the time is right! All I have to say is, y’all better check out the Vanderkitten website. J-dub introducted me to Vanderkitten via Mandy’s blog, and the second I went to the VK website I was hooked! Their clothing is catchy and HOT, and their jerseys are definitely the HOTTEST I've ever seen. I have never, EVER seen such awesome cycling clothing for women. Vanderkitten is doing GREAT things for women’s cycling. VK shows women that it is OK to be hot, sassy, feisty, and cute all while being CRAZY FAST on the bike. Check out their website and their team standings. These women kick ass. More to come later…
I was able to talk to my hubby this week for the first time in over a month. That was nice, just a little over two months before he’ll be home! YEAH!
I did my first three hour ride in quite a while this past week. It was awesome! I’ve learned that it takes my body a few days to recover from a long ride like that. That’s okay though, at least I was able to do it! It was all rolling (I LOVE THE HILLS OUT HERE), and I felt pretty strong. It’s been a long time since I’ve been on such a challenging ride. I would say the last ride I’ve had like this was when I was a junior at the boat school. On Friday a Ukranian guy I met while riding asked me if I had trouble getting up in the morning to ride (you have to get up between 0430-0500 to be on the road by 0530 to beat the heat out here). I told him that getting up early hasn’t been an issue for me. I am excited to ride. I love riding and usually can’t wait to get to bed the night before so I can ride the following morning. I know what it’s like to not be able to ride due to illness, and I’m not taking any chances or taking riding for granted. Nope, never take riding for granted. I take every opportunity to ride and savor every minute of it. Nothing comes close to cycling. Nothing. Call me obsessive, but if you’re not a cyclist, you won’t understand.
It’s awesome seeing how strong I’ve gotten over the past two months. I started out only being able to spin easy for thirty minutes at a time, to struggling ridiculously on the hills (and I'm a climber), to now crushing the hills and going on three hour rides! I am thankful for this, and continue to thank God for my blessings! My body may not recover as quickly as it used too before getting sick, but hell, I’ll be wiped out for three days…it’s worth the beauty of a LONG HILLY ride! If you’re wondering what my body does after a long ride, I’ll tell you. The afternoon after a long ride I usually end up pooing a lil bit of mucous and a lil bit of blood, nothing to be too alarmed over (considering the amount of blood I’ve lost in the past while pooing). To counter this I take lots of naps (it took me a while to get used to sleeping in the middle of the day), drink my wheatgrass, and eat well. But the key to it all is plenty of rest. It’s taken me over two years to listen to my body, but I think I’ve (almost) got it figured out. I haven’t been able to go on such challenging long rides since getting diagnosed, so this is still a learning process for me. I’m figuring it out though, and will hopefully cause some serious pain to chicks in WA State next year during racing season! YEAH BUDDY!
Wednesday, August 6, 2008
Saturday, July 19, 2008
Great news! My Gastro doc says after my prednisone taper I am DONE with the ‘roids. Finally!
I had my Remicade infusion and saw my doc on Friday. I definitely wasn’t looking forward to my infusion b/c I was worried I was going to get stuck with a needle like 5+ times. Because I have been stuck so many times in the past two years my veins now harden and roll or they conveniently “magically” disappear when they know the needle is near. It’s absolutely amazing what the subconscious-self can do. I mean, mentally I don't think it’s a big deal, but apparently my subconscious-self does. The damn thing has a mind of it’s own and as a result, my veins disappear. It’s freakin’ amazing. Take Thursday for example. I was looking at the veins in my arms and saw a few good potentials. Conveniently enough, as I was sitting in the comfy La-Z-Boy Recliner in the Ambulatory Infusion Center Friday morning, they were nowhere to be seen. Interesting.
Anyway, the nurse successfully poked a vein in my hand on the first try and the rest is history! Thank goodness! My Remicade aka Mouse Juice aka Jerry Juice (as Clarice calls it) was doubled this time around, so hopefully my body will stay in remission once off the 'roids. So, if I look extra Jerry-ish it’s b/c I have double the mouse antibodies flowing through my veins. And no, I’m not joking! I’m a little fatigued and my body is a little out of whack right now, but I think its b/c the medicine is doing its thing. Cleaning out the bad and healing the wounds.
After my infusion I saw my Gastro Doc. As I ever so excitedly announced above, after I taper down from the ‘roids this time I am done with the prednisone. He is concerned for my bones as well as my eyes. I guess if you’ve been on prednisone for quite a while it can start affecting your eyes. I’m just glad that instead of me making my own decision to be off the ‘roids (we all know how that went), my Doc put his foot down and said no more. It’s a relief. Trust me. So, this news is, as Borat would say, “Great Success!”
If for some reason I do start flaring again, my meds are getting switched and I’m getting another colonoscopy b/c he wants to check my mucosa and just reaffirm that there isn’t anything shady going on in there. My doc spoke about possibly putting me on Humira or Methotrexate. He also said he would write me a referral to the Mayo Clinic in Minnesota. So, like anything else with this beast, we’ll just wait and see what my body decides to do. Of course I want more than anything to stay in remission.
I flew back to AZ early this morning (THANX DAVID FOR TAKING ME TO THE AIRPORT AT 0430)! Actually I want to give much love to David, my super awesome neighbor, who put up with my crazy paranoia and silly self. I also want to thank Barb, who is not only one of my best friends, but my pseudo mama! You guys are great! I was only in VA for a few days, but the days were great and well spent. Yes, even my long day at the hospital on Friday wasn't that bad because things got accomplished and a lot of questions were answered.
I’m not planning on going back to VA until mid September for my next treatment cycle, so I’m going to be livin’ it up in AZ, and doing a lot of riding. Until next time my friends!
Wednesday, July 16, 2008
Great Success! I am absolutely ecstatic to announce that I have now been in remission for a little over a month! And yes, I have been taking full advantage of the fact that I am feeling great. I have ridden my bike so much this past month, it’s been absolutely awesome. The cycling in Arizona has been phenomenal, and I can't wait to get back so I can ride some more! I had to leave AZ on Tuesday to fly back to VA for my eight week “maintenance” Remicade Infusion and to see my Gastro doc. If it was my choice I wouldn’t leave AZ, but I have to get my mouse juice and get some answers from my doc! For those of you wondering why I couldn’t just get my infusion in AZ, it’s not that easy. Remicade is extremely expensive and I can’t just switch Gastro docs. As you know, my case is extremely complicated and I wouldn’t be getting the best care possible if I switched docs for six months. So, I am going to fly back and forth to get my treatments until my hubby and I move in November (we still don’t know where we’re going yet but I’ll post as soon as I know).
I am now on 20mg of prednisone (originally started on 40mg) and have been tapering down by 5mg a week. As soon as I got on the ‘roids I went into remission, but can’t keep up this cycle. I love the ‘roids (this time around) because it gave me my life back. My last flare made me so miserable, I was desperate to take anything that worked. Thanx to the ‘roids I can ride my bike, workout, not be a slave to the commode, not have to worry about having to cancel plans, etc etc. I am grateful that my body (most of the time) responds to the prednisone, but am sad at the same time because in the past, 3-6 weeks after taperng, I usually relapse. This has been the never-ending cycle for the past two years and it has gotten very, very old. I feel great for the few months I’m on the ‘roids and then once off the ‘roids am back to square one. I just want to be healthy without the use of prednisone and I DO NOT want the vicious cycle to repeat itself this time. I’m being optimistic that this time will be different...
I guess the most difficult aspect of being on predisone is that after I’ve taken it for about a month I have days that I look in the mirror and don’t recognize my own face. It’s hard. About a week ago my sis commented on how my “now” face looked completely different from my wedding picture “then” face taken three years ago. Well, unfortunately the 'roids will do that to ya. They make your face puffy. I feel like freakin marshmallow man and the damn ‘roids create a “moon face.” After tapering off the ‘roids my face always returns to “normal,” but I don't exactly know what "normal" is for me anymore. I’m on and off the ‘roids so much that I never have one set “normal” face. People that have only known me for a few months prob would only recognize me with the moon face, while those who have known me the entire time I’ve had Crohn’s (and before) can tell when I’m off the ‘roids, and when I’m back on the ‘roids. Arg! I just want some form of stability. To be consistent for once. I honestly believe it’s coming, I can feel it. I’ve never felt as stable as I am now, so I hope things are once and for all working out. I guess I’ll just have to wait and see…
My mouse juice infusion is early Friday morning and I see my doc Friday afternoon. Doc Smith (the most awesomest Gastro doc alive) is doubling the dosage of my Remicade in an attempt to keep my body in remission once I’m off the ‘roids. I have a little under a month left on the ‘roids, so the true test will be once I’m tapered. I’m keeping the faith, but get a little frustrated at times. I know it’s all about patience. Like I’ve said before, patience is definitely something this disease has taught me.
As long as I can keep riding my bike, I don’t care what happens. I want to get off the ‘roids, and I desperately want Remicade to work, but through it all I just want to continue the consistent riding that I’ve been fortunate enough to partake in the past month. Riding has been so, SO therapeutic for me. When I ride, I don’t have Crohn’s. Riding is my time to think, to question, to believe that things will get better soon. Riding gives me the self-confidence and self esteem that the predisone once took away (I had a hard time adjusting to the moon face and “puffy” body). When I ride, I question my diagnosis. Sure, I have been diagnosed with Crohn’s and based off of my two year struggle know that the disease is very active in my body. I know it is a serious auto-immune illness, I get it. But just because my body is attacking my digestive tract at this time in my life doesn’t mean I’m going to have it for the rest of my life. I know science has proven otherwise, but ya know what, who says things can’t change. Science has been wrong before. Stranger and more mysterious things have happened. I am refusing to accept the fact that I will have to struggle with this illness for the rest of my life. Right now, yes, it’s an awful roller coaster. But if I give up, and accept the fact that for the rest of my life (I’m 26) I’m going to be living with this, then that is exactly what will happen. As René' Descartes once said, “Cogito ergo sum” aka "I think, therefore I am."
Listen, I’m not in some fantasy world. I fully understand the fact that I could possibly have Crohn’s for the rest of my life. I get that. And if that’s how it’s going to be, then so be it. But I’m not going to just accept that fact that I’m going to have it for the rest of my life because medical science and docs tell me so. I’m going to live it for myself, and keep the faith. This, my friends, is why I ride. Because riding gives me my life back. Riding gives me hope. Because when I ride, my Crohn’s disappears. Every time I sweat, I’m killing my Crohn's. I’m not allowing it to control me. I’m fighting this beast, and have full confidence that I will come out ahead, even if it takes years.