IC Journey

A Little Desperation Is a Dangerous Thing

Posted in Uncategorized by LJ Johnson on April 21, 2010

That is probably a minimization. I am likely more than just a little desperate, though I wouldn’t think that I’m REALLY desperate.

To start – if raw foodists or vegans find my comments insulting just because they don’t accept the supposition that living on nothing but fruit and vegetables with the occasional handful of nuts or pulses is really much better for you, they are welcome to flame me. I’ll use the resulting heat to grill something that used to have a face. 😉

Someone friended me on Facebook a while back who is a very forceful proponent of raw food for healing. She insists that a diet of pretty much fruit and “green smoothies” (a smoothie made in the blender with greens) and an admitted handful of nuts every three days has cured her of every disease she has ever had, and that it is the only true way to heal interstitial cystitis.

I know that the diet she suggests lacks Vitamin B12, regularly suggests the ingestion of incomplete proteins (she makes NO differentiation between a complete or incomplete protein and her food combining, rather than focusing on protein completion, focuses on the meal being very alkaline and being easily/properly digested) and can be either difficult to maintain and/or dangerous in the long term. I’ve asked her very pointed questions about it, and she tends to refer me to books which have little research, a lot of glowing testimonials and more of the same information. She assures me that I just have no understanding of the “real science behind it.”

Here is where it is frightening. Though I was trained in appropriate dietary management a lifetime ago when I worked as a residential manager in a group home, and I KNOW that a vegetarian diet that is sustainable and healthy will unfortunately require at least the occasional ingestion of eggs and/or milk OR possibly amaranth, buckwheat and a few other rare complete protein foods that are plant-based, I am STILL tempted by her continual encouragement. When I’ve asked her about including plant sources of protein, or an awareness of food combining to complete proteins I am told that the combinations (beans and rice, for example) are acidic, and must be avoided. The only SAFE foods are a set list of fruits and vegetables (root vegetables are also prohibited, as are squash). If it isn’t on an alkaline food list, it’s definitely out.

I know this diet is unhealthy. I also know that oxycodone, soma, gabapentin and imipramine ALL cause fatigue and drowsiness, as well as constipation, and all are required for my pain management. I struggle daily with the question of whether or not their continued use is something I should be doing, or if there is “better” out there, and what it is. Further, since when fully hydrated (i.e., drinking the appropriate amount of water for my body weight) I am in the bathroom 3 to four times an hour (lately usually four), and hesitancy can make it take me five minutes to empty my bladder, a third of my life is spent in the bathroom at this point. If I want to leave my house, I avoid all fluid intake except enough to swallow medication, and skip my blood pressure medication because it contains a diuretic. This allows me to only use the bathroom every half hour. It has become such a bad habit that I have to remember and CHOOSE to have “hydration days,” and also know that the third day begins muscle spasms every time I move my legs (my body’s electrolyte balance finally gets bad enough to create symptoms that require intervention). I am probably damaging my kidneys at this point, especially if you consider the medication load that they deal with.

Since I’m finally acquiring health insurance, I can entertain surgical procedures, and will be exploring interstim (though only half-heartedly, because everything else I’ve done that makes me “hold it” puts me into retention almost immediately), and more likely, either bladder augmentation or removal. These are seriously drastic measures, and once again, when I look at THEM, I end up, in a very real, and possibly logical way, once again considering…

… is it so bad to only live on fruits and vegetables if it gets rid of my pain, somehow miraculously regrows my bladder to its original size (it is currently less than 1/4 the size of a normal woman’s) and makes me 20 to 30% underweight (look out runway models, here I come!)?

No one should have to have this choice, but it’s okay. I probably would rather have it happen to me – I know I can endure it – than someone else I care about. However, the nearly irresistible temptation to abandon all reason and pursue an unhealthy diet in a quest for hope makes me so afraid for so many other IC patients, because desperation will make you try just about anything. How else do you think all those bogus cure people stay in business?