November 29, 2013 marks 5 years with my Gastrostomy or g-tube rather. While this may sound silly or irrelevant to most its been a journey worth marking in history. A journey to self-acceptance. A journey to self-love even as CF marks and mares my body. A journey to being able to "do-whatever-it-takes" to be healthy. A journey on sooooo many levels.
November 29, 2008 was ugly. In fact, the middle of November thru January 1, 2009 was REALLY ugly! I hated the g-tube. I hated that CF had once again dictated things for me. I hated that B and I spent Thanksgiving in the hospital. I hated that when we got home our whole life was changed and rearranged to accommodate my CF. I mean, I HATED IT.
Over the next two years I gained nearly 20lbs which was hard, even though I knew that's what would happen and the whole purpose of the g-tube But as a woman, gaining 20 pounds is brutal. I heard comments like "that can't be healthy to gain so much so fast" or "I could never gain 20lbs; I would feel so fat." Silly as it was I read into those comments and as my waist line grew so did the self-doubt. As I went from a size 0 to a size 4, I felt the opposite of healthy.
Until I looked back at pictures of myself. I was all bone and skin. I wore a size zero. I was barely 100lbs and remember feeling as though I was starving all the time, I mean I even stashed food by my bedside. I was always one to eat whatever I wanted and lots of it but being pancreatic deficient I just couldn't keep the weight on. I took lots of naps because I had no energy. I was diagnosed with onset Osteoporosis from chronic malnutrition. The list of goes on and on….
Yet, my mind was so warped about body image that I thought I looked good. I proudly aired that I could wear a size zero, not many 25 year old's can say that. My body was literally slowly shutting down and on some level I was okay with that as long as I "looked" good.
Today, 5 years later, I feel like a new person inside and out. Being on this side of the journey looking back I wish I had opted for the g-tube sooner. I now fluctuate between a size 4 and a size 6, my BMI is a healthier 21-22% and I have the energy to participate in my life. I still have difficult moments of fully accepting my new body but overall I love it. I love that I'm able to set goals like running a half-marathon and know that I have the muscle/fat to do so. I love that I can shop in the women's department and not the little girls. I love that my latest Dexa scan for Osteoporosis showed "normal" bone mass levels. My need for emergency medical intervention has decreased. My lung function has stablized. I just love all the benefits I'm reaping. But, it took my a long time to get to this point. I had to learn to be kind to myself and to have patience with myself.
Today, I'm a huge advocate for the g-tube when needed. I'm on my physicians list of folks to call when they are recommending a g-tube placement to another patient. These patients all have the SAME concerns I did in the beginning. I hate that they would choose to not do it because of body image or the fear of what others will think. I want them to understand how great life with it can be, if, they're willing to embark on the journey.
Initially doctors felt I would only need for about 5 years but honestly I want to keep it for as long as I'm still benefiting from it. Which at this time I don't see a reason to pull it. It keeps me alive and thriving!
I am glad those hard years are behind me.
~Doodlin'
November 29, 2008 was ugly. In fact, the middle of November thru January 1, 2009 was REALLY ugly! I hated the g-tube. I hated that CF had once again dictated things for me. I hated that B and I spent Thanksgiving in the hospital. I hated that when we got home our whole life was changed and rearranged to accommodate my CF. I mean, I HATED IT.
Over the next two years I gained nearly 20lbs which was hard, even though I knew that's what would happen and the whole purpose of the g-tube But as a woman, gaining 20 pounds is brutal. I heard comments like "that can't be healthy to gain so much so fast" or "I could never gain 20lbs; I would feel so fat." Silly as it was I read into those comments and as my waist line grew so did the self-doubt. As I went from a size 0 to a size 4, I felt the opposite of healthy.
Until I looked back at pictures of myself. I was all bone and skin. I wore a size zero. I was barely 100lbs and remember feeling as though I was starving all the time, I mean I even stashed food by my bedside. I was always one to eat whatever I wanted and lots of it but being pancreatic deficient I just couldn't keep the weight on. I took lots of naps because I had no energy. I was diagnosed with onset Osteoporosis from chronic malnutrition. The list of goes on and on….
Yet, my mind was so warped about body image that I thought I looked good. I proudly aired that I could wear a size zero, not many 25 year old's can say that. My body was literally slowly shutting down and on some level I was okay with that as long as I "looked" good.
Today, 5 years later, I feel like a new person inside and out. Being on this side of the journey looking back I wish I had opted for the g-tube sooner. I now fluctuate between a size 4 and a size 6, my BMI is a healthier 21-22% and I have the energy to participate in my life. I still have difficult moments of fully accepting my new body but overall I love it. I love that I'm able to set goals like running a half-marathon and know that I have the muscle/fat to do so. I love that I can shop in the women's department and not the little girls. I love that my latest Dexa scan for Osteoporosis showed "normal" bone mass levels. My need for emergency medical intervention has decreased. My lung function has stablized. I just love all the benefits I'm reaping. But, it took my a long time to get to this point. I had to learn to be kind to myself and to have patience with myself.
Today, I'm a huge advocate for the g-tube when needed. I'm on my physicians list of folks to call when they are recommending a g-tube placement to another patient. These patients all have the SAME concerns I did in the beginning. I hate that they would choose to not do it because of body image or the fear of what others will think. I want them to understand how great life with it can be, if, they're willing to embark on the journey.
Initially doctors felt I would only need for about 5 years but honestly I want to keep it for as long as I'm still benefiting from it. Which at this time I don't see a reason to pull it. It keeps me alive and thriving!
I am glad those hard years are behind me.
~Doodlin'
What a journey indeed! So interesting that you had to LIVE through all these difficult steps, all these trying experiences, to end up in the positive place you are now. It's wonderful how much you've learned and how much your health improved. I admire you for trying to help others benefit, too. You're just the right person for anyone considering a g-tube to talk to - so generous for you to share your experience.
ReplyDeleteI love that I had a Gtube put in too! This fall marks my 15th year with it. I had mine put in at age 13. I was under 40 lbs. It pretty much saved my life. I don't use it too much now, just if I lose when sick, etc. I'm looking at maybe getting it out in the next couple years. I'm digesting better with a different enzyme. And I'm drinking 1 ensure a night, instead of putting 3-4 through the tube and weight has been stable. For once!!!! I'm a big advocate for it too! So glad you are enjoying the benefits of it. :-) Cheriz, www.lifeofcheriz.blogspot.com
ReplyDeleteAnonymous- Thanks! The world of CF was largely muted after the closure of CF Camps in the 1980's and now with social media and blogs, we CF'ers are able to share our experiences with other CF'ers and non-CF'ers. My goal has always been to help other learn from my mistakes, in hopes that they can preserve their health and bodies longer and live life to the fullest.
ReplyDeleteCheriz- Seriously, right?! I do admire your ability to drink, even one, Ensure. I just can't. It literally makes me gag just smelling it. I guess 20+ years of drinking, chugging, choking-back, etc those types of drinks I just can't do it. I am happy as a clam with doing it thru the g-tube. I'm much more constant and complaint this way :-) So happy to hear that your weight has been stable, makes such a difference in overall health. Keep doing what works for you!