The other day I stumbled upon a webinar that Risa Simons put together for the PKD Foundation back in 2013. She spoke about taking an active role in managing the disease and not waiting around for things to get so bad that the only action was reaction.
I can relate. I'm on a journey to learn as much as I can about this disease that has seemingly taken over my family - maternal grandmother, maternal uncle, mother, me and (I believe) both of my brothers. Yeah my mom stacked the odds with all three of kids getting PKD (a 1.25% conditional probability for all my stats-minded friends out there). We're still waiting to see how our cousins fared in the genetic pool. Fingers crossed that our deck was stacked and that they'll emerge unscathed.
But as much as I'm focusing on the education end of things, I'm not taking much action on the physical wellness end of things. Don't get me wrong, I'm active. But I'm also carrying around extra weight.
And every time I see my nephrologist I'm reminded of the increased cardiovascular risk created with this extra weight.
And every time I look at transplant guidelines, I'm reminded that less weight is better (although some studies show that heavier people fare better when it comes to dialysis and transplant).
I'm also reminded that if I develop diabetes, my transplant score plummets.
Really folks. No pressure.
The real kicker, however, is that I'm currently being treated for an eating disorder. Not anorexia (obviously) but binge eating. Meaning that I have a tendency to manage emotion via eating.
And when you're diagnosed with a chronic disease with no treatment other than dialysis, transplant or death, there are definitely some emotions to eat.
Treatment for binge eating is, first of all, making peace with food. This translates into an end to dieting. Which I've been successful at incorporating into my life. I've stopped viewing food as good or bad. I no longer count points or tally calories.
But I'm still being pressured to diet by outside sources. The eating disorder people have tried to be supportive. My dietician has offered to write my doctor a letter. My therapist has shared her outrage, as well as studies that break the link between weight and health.
I thank them for their support and their passion but it's honestly not going to change anything.
My honest plan was to continue to work on my coping skills, avoiding the self-medication that food offers. And then, in a couple of years, put myself on a diet to get my weight well within the lower range of 'Overweight' (I've been at lower weights and they were too low - know thyself, right?). Therapy be damned - a girl's gotta do what a girl's gotta do.
But getting back to the webinar (took me long enough to get to the point, I know), Risa used a visualization that really stuck with me - that of a car's side mirror.
Objects... are closer than they appear.
Transplant list interviews... are closer than they appear.
End stage renal disease... is closer than it appears.
As much as I hate to do it, I think the time is now. It's time to try to figure out how to restrict my diet (without perceiving it as restriction) in a way that is sustainable over a longer time period (and not the six month duration of past diet attempts).
Somehow I need to convince myself that it's not because of vanity. Or a need for perfection. Or that my worth is inversely related to my weight. THIS time I need to figure out a way to convince myself - deep down convince myself - that this is for my health.
Simple, right?
Just like the medication I take, I need to decide that I have no other options. That weight loss is as much a key to my survival as blood pressure medication or thyroid medication or Tolvaptan/Jynarque.
Because deep down, there's fear. Fear that my doctor will lose faith in me. That any failure to lose weight will somehow signal that I'm not taking my disease seriously. That the risk of a cardiovascular event will translate into a heart attack. That my blood sugar will climb and I'll be labeled as pre-diabetic or diabetic, causing my EPTS score to drop me lower in the Kidney Allocation System.
It would be nice to be able to focus on one condition at a time. But I don't think I have that luxury.
Onward.
I can relate. I'm on a journey to learn as much as I can about this disease that has seemingly taken over my family - maternal grandmother, maternal uncle, mother, me and (I believe) both of my brothers. Yeah my mom stacked the odds with all three of kids getting PKD (a 1.25% conditional probability for all my stats-minded friends out there). We're still waiting to see how our cousins fared in the genetic pool. Fingers crossed that our deck was stacked and that they'll emerge unscathed.
But as much as I'm focusing on the education end of things, I'm not taking much action on the physical wellness end of things. Don't get me wrong, I'm active. But I'm also carrying around extra weight.
And every time I see my nephrologist I'm reminded of the increased cardiovascular risk created with this extra weight.
And every time I look at transplant guidelines, I'm reminded that less weight is better (although some studies show that heavier people fare better when it comes to dialysis and transplant).
I'm also reminded that if I develop diabetes, my transplant score plummets.
Really folks. No pressure.
The real kicker, however, is that I'm currently being treated for an eating disorder. Not anorexia (obviously) but binge eating. Meaning that I have a tendency to manage emotion via eating.
And when you're diagnosed with a chronic disease with no treatment other than dialysis, transplant or death, there are definitely some emotions to eat.
Treatment for binge eating is, first of all, making peace with food. This translates into an end to dieting. Which I've been successful at incorporating into my life. I've stopped viewing food as good or bad. I no longer count points or tally calories.
But I'm still being pressured to diet by outside sources. The eating disorder people have tried to be supportive. My dietician has offered to write my doctor a letter. My therapist has shared her outrage, as well as studies that break the link between weight and health.
I thank them for their support and their passion but it's honestly not going to change anything.
My honest plan was to continue to work on my coping skills, avoiding the self-medication that food offers. And then, in a couple of years, put myself on a diet to get my weight well within the lower range of 'Overweight' (I've been at lower weights and they were too low - know thyself, right?). Therapy be damned - a girl's gotta do what a girl's gotta do.
But getting back to the webinar (took me long enough to get to the point, I know), Risa used a visualization that really stuck with me - that of a car's side mirror.
Objects... are closer than they appear.Transplant list interviews... are closer than they appear.
End stage renal disease... is closer than it appears.
As much as I hate to do it, I think the time is now. It's time to try to figure out how to restrict my diet (without perceiving it as restriction) in a way that is sustainable over a longer time period (and not the six month duration of past diet attempts).
Somehow I need to convince myself that it's not because of vanity. Or a need for perfection. Or that my worth is inversely related to my weight. THIS time I need to figure out a way to convince myself - deep down convince myself - that this is for my health.
Simple, right?
Just like the medication I take, I need to decide that I have no other options. That weight loss is as much a key to my survival as blood pressure medication or thyroid medication or Tolvaptan/Jynarque.
Because deep down, there's fear. Fear that my doctor will lose faith in me. That any failure to lose weight will somehow signal that I'm not taking my disease seriously. That the risk of a cardiovascular event will translate into a heart attack. That my blood sugar will climb and I'll be labeled as pre-diabetic or diabetic, causing my EPTS score to drop me lower in the Kidney Allocation System.
It would be nice to be able to focus on one condition at a time. But I don't think I have that luxury.
Onward.
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