Eating disordered...help!!

[casper2636]

I'm in deep doo doo. I'm an eating disordered person, and have battling with weight for most of my adult life. Not eating had been my life, until I turned 30 and realized there is more to life than being thin. I changed and was "normal" for 15 years. Now, that I'm faced with the stress of dialysis, my "eating" habits have come back. With the Renal Diet I'm terrified to eat anything! I'm on disability and have no extra money for therapy (which I've done and was VERY helpful). I'm terrified to let my nutritionist know of my problem, because that would jepredize my chanch of transplant. I don't know what I can do. Any options or opinons? I've been to eating disorder centers (2x) and they don't have the facilities to do dialysis. 

[okarol]

If a hospital or a eating disorder center doesn't have dialysis they would most likely transport the patients to the closest one.
I don't know much about eating disorders but I do know the stress of dialysis can make life feel out of control. If you are on Medicare you should be able to get counseling paid for, I think.
I hope you can get some help soon.

[gothiclovemonkey]

 
Im sorry that ur having trouble with it again, I dont really know if this helps, but i have found that with my problem, which is a struggle every day, that if u just try to convince urself that u have gone this long without doing that habit, then maybe we can force ourselves to do what we need to... its hard, and if u need someone to help, we could do like a whateverAnonymous type thing, to help each other... its not exactly the same problem, but they are sort of intertwined..... id be happy to help.
Anything for that transplant!
Also.... idk where u are, but my dr seems pretty content telling me that im to fat and the only way he seems me getting a transplant is by starving myself, and at first i thought he was just being an ass, until the next appointment he said well u havent lost weight mentioned starving myself again.... so idk... idk that that would keep u from getting a transplant, and the fact u would be seeking help would show u are trying, so i think u should mention it to the dietician

[KarenInWA]

I can totally relate to feeling like I'm not supposed to eat anything while on this renal diet.  In fact, I'm opposite of you, I just don't follow it and eat what I want within reason.  I know I eat above my "amounts" in a day, but I'm not a fan of starving.  I'm a healthy weight (really, it's the only thing that's healthy about me, it seems) and people don't believe I weigh as much as I do (150 lb at 5'8")  Seriously, being on a "diet" where it's "healthier" to eat frosted animal cookies than a banana, or, dare say, a serving of brocolli, is pretty frickin' rediculous, I think.

KarenInWA

[Hazmat35]

You have to put your pride aside, and let your Nutritionist help you.  That is what they are there for.  Wheter you have a transplant or not, they are there to help.  What would happen, if you had the transplant and then you start having issues because you never spoke up and told them about your eating disorder.  You might be doing more harm to yourself than good! 

I've been on Yo-yo diets for years, and ever since I've had this "renal" diet, I've never stuck to it 100%, and I don't know anyone who does.  You have to follow it and watch what your eat WITHIN REASON.  It really isn't that bad once you get some recipes that work! 

[casper2636]

I think the issue with me is of the "control" over my body. Over eating and/or under eating are all the same issue...feeling out of control. I feel like my body has betrayed me, and is turning against me and I'm so angry!  I've been going to a twelve step program for over eaters ('cause it's all the same issue) but, they hate me there 'cause I'm 5'8" and don't even weigh 95lbs. I'm still terrified to talk to my nutritionist (although, I know they all suspect). They are giving me extra nutrition during my D. and it's helped a lot. I don't know if I should keep going to the twelve step and try to work it, or just give in and tell the truth which would feel soooo vulnerable and open for rejection.

[monrein]

Can you attend support group for people with anorexia/bulimia?  Stress is causing you to revert to older coping strategies (not eating) in order to feel more in control but transplant or no transplant these strategies will hurt you even more than they would hurt a person of normal health.  We are at risk for cardiac issues, bone issues and while on D, not getting enough protein is a big problem.  At your height and weight I doubt that anyone looking at you doesn't already have an idea that something is very wrong

Your kidneys have failed but in fact your body has not totally betrayed you.  By not providing it with adequate nutrition you are in fact letting IT down rather that the reverse.  There are healthy ways to regain real control and you've shown yourself capable of doing so in the past.  You must do so again or else frankly a transplant could be the worst idea of all. Telling the truth and thereby  being vulnerable and open for rejection is in fact what NEEDS to happen since eating disorders are powerful enemies and are excellent at distorting the truth to those in their grip.  Although overeating is also a a disordered relationship with food it's not the same thing and you need more specialized help in my opinion.  Can you ask the eating disorder centers to help with options?

Good luck and let us know how you get on...you don't need a transplant until you get this issue under control.  An organ is a terrible thing to waste.
Please don't think that I'm judging you harshly...anorexia is a harsh taskmaster and I've almost lost a friend or two to it.   

[MooseMom]

I have absolutely no experience with eating disorders, but something struck me when I read your post, casperabout "control."  As much as I hate the renal diet...I resent having to spend so much time thinking about obscure things like potassium and phosphorus..., I follow it quite rigidly because it makes me feel like I have some control over a situation that is not usually conducive to having control.  (How incoherent was THAT? )     Believe it or not, for me, the renal diet is a blessing in disguise. 

If what is at the root of your eating disorder is this need to have control over your body, the renal diet is a great way to exert control.

What would you think of sitting down with your renal dietician and having her write you a "prescription" for eating to meet your unique nutritional needs?  I know it would require you to open up a bit about your difficulties, but transplant centers don't expect you to be perfect.  They expect you to do what you need to do to keep you and a new kidney in tip top shape, and that means being open and addressing any issue that could be problematic post transplant.  But anyway, maybe a strict diet plan (emphasis on strict) would work better for you than mere guidelines.  "This is what you eat for Monday lunch, this is what is for dinner, this iswhat is for breakfast the next day, etc."  Perhaps this strategy will give you the "control" you need while at the same time provide you with proper nutritionj.  Sorry if this is completely inappropriate advice./suggestion!  The stress of D exacerbates other stressors, I know.

[casper2636]

Monrein...you are right, if a kidney was available, I wouldn't accept it. I'm not in the right state of mind to care for something so precious! I have looked into support groups for my problem (I even googled it and found a site giving tips on how to be anorexic better!!!!),but to no avail. I didn't feel you were judging me, just telling the truth. Thanx I think what I'm going to do, is just breakdown and tell my nutritionist. Medicare, at least I don't think , won't cover a specialist. Right now I feel so out of control, what else can happen?  I can only take what comes and pray for the best. ONE DAY AT A TIME.

[MooseMom]

Perhaps consulting your nutritionist and telling her the truth is the first step in taking control.   She may surprise you and be a real source of help.

[casper2636]

You are right. I do need someone to tell me whats for b-fast, lunch and dinner. It sounds adolescent, but if there is one thing I can do well is follow a DIET. The ambivolance of the renal diet is to large for my small mind to comprehend. I always have second thoughts on what I'm putting in my mouth. VERY GOOD IDEA! That way I'll know I'm getting the appropriate amount of nutrition.  Everyone's input is really helping me to get "off the fence". 

[Hazmat35]

I think the issue with me is of the "control" over my body. Over eating and/or under eating are all the same issue...feeling out of control. I feel like my body has betrayed me, and is turning against me and I'm so angry!  I've been going to a twelve step program for over eaters ('cause it's all the same issue) but, they hate me there 'cause I'm 5'8" and don't even weigh 95lbs. I'm still terrified to talk to my nutritionist (although, I know they all suspect). They are giving me extra nutrition during my D. and it's helped a lot. I don't know if I should keep going to the twelve step and try to work it, or just give in and tell the truth which would feel soooo vulnerable and open for rejection.

I would do both!  Go to the meetings if they help you!  And definitely tell the Nutritionist!  You obviously can't do this alone!  You need the support of others, epically professionals.

[Desert Dancer]

casper2636, I also struggled with anorexia many, many years ago and it was NEVER about the weight; it was ALWAYS about control over my life. MooseMom is right, though: following a renal diet can be a fantastic way to regain some sense of control.  What I have done is gone out and bought a "Bowes and Church Food Values of Portions Commonly Used" and instructed my dietician to just give me a daily/weekly ceiling of upper limits for potassium, phosphorus, etc. Then, using the book, *I* decide how to structure my food intake. If I know I'll want to splurge on something (say, Mexican food on Friday) I will limit my intake through the rest of the week to allow for it. This way I'm in control of my diet and there are very few things I'll "never be able to eat again".  Dietary compliance is one of the biggest factors in the success of your treatment and the way you feel. Don't be terrified! Look at it as an opportunity to empower yourself in a way that is just the opposite of how you dealt with food before.  How's that for a kick in the teeth to BOTH diseases? 

Another thing that may help you feel empowered is getting involved in your treatment and learning everything you can about it. Have you considered training for home dialysis? It's a great way to feel in charge because, well, you more or less are.

I hope you're able to find the resources to pull yourself through this. Dialysis is hard enough on the body as it is - adding malnutrition to the mix will only complicate matters drastically. Thinking of you here.

[casper2636]

You are all right, a renal diet can be a great gift of control...too much control. In my head I keep thinking less is better. The less I eat, the less I have to worry about over consuming all the things we are not to consume. My dietician has told me I can eat what ever I want to...I'm so scared to - suppose I go over board and just throw my numbers over the top! But, in theory, so what...my kidneys are shot - no going back. Tomorrow, I'm meeting with my dietician, and I'll ball my eyes out and just give it up! NO HOLDS BARRED - THIS IS IT!

[cariad]

You are all right, a renal diet can be a great gift of control...too much control. In my head I keep thinking less is better. The less I eat, the less I have to worry about over consuming all the things we are not to consume. My dietician has told me I can eat what ever I want to...I'm so scared to - suppose I go over board and just throw my numbers over the top! But, in theory, so what...my kidneys are shot - no going back. Tomorrow, I'm meeting with my dietician, and I'll ball my eyes out and just give it up! NO HOLDS BARRED - THIS IS IT!

Wait, no, no! The diet numbers are not about the kidneys, they are about protecting your heart (potassium) and bones (phosphorous). There are binders for phos (but you still may not be able to go totally mad with intake), but with potassium your absolute safest option is to keep that within range or you could die very suddenly.

My anorexia *was* always about weight, and I guess the none-too-pretty truth is it was also about revenge. It's a long story. There was nothing like the euphoria of seeing those scale numbers descend to take my mind off of whatever else was bothering me. Also, not eating gives you that floaty high that I always adored. I resent anyone daring to tell me what to eat - too many years endured with that situation - so I would just ignore a prescribed diet.

In my experience, you will be applauded at an eval for being underweight, but then I was never as underweight as you at an eval. (please take this as the judgment-free statement that it is meant to be). If you tell them you have an eating disorder, they should take it seriously, I would just worry that they would take it too seriously and deny you a place on the list.

I am a contrary person on balance, and would say that the mindset that most helped me get over anorexia and want to get my health in order was to see eating as rebelling against repression and stupidity. Just like all of those doctors who told me I would never be accepted into a clinical trial motivated me to prove them wrong and go through it and survive it and laugh at them whenever I think about them (which is not very often). So learning about the MULTI-BILLION dollar diet industry, Health at Every Size and the myths surrounding weight and health motivated me to see eating as my own way of fighting back. I guess it's a form of control - the control to say, even to medical professionals, this is how I choose to eat, you do not get a say in it until you are asked.

Here is a site that really helped me learn about all of this (and occasionally I bore IHD with my militant fat-rights perspective). It is run by a former anorexic (she may use the word 'recovering' but I loathe it, so I skip that) who was not treated appropriately because her body was never meant to be super-thin, so the lowest weight she ever reached still put her in the "healthy" range. http://the-f-word.org/blog/ Also, Something Fishy is the gold standard recovery site, but I never found it as helpful. Rachel (from the-F-word) is part of an eating disorder collection of blogs and links to others. You must watch the vid she has up now How Much Weight. It may give you a laugh, it certainly did me. Good luck!

[casper2636]

Yes, I hate having other people telling me what to eat. My body is the the only thing I "own"! And, yes, I love the euphoria of seeing those scale numbers go down...but  now, it's scary, and I know I look like walking death ! I wish I had the energy to go to girls schools (like I used to) and talk to them about eating disorders and how they NEVER DISAPPEAR. That is what did my kidneys in. It's my own fault and I have to live with it. I think thats half the problem, because I keep beating myself up over it. Whats done is done. Tomorrow, I'll see what comes.

[casper2636]

ACKKKKK! My nutritionist cancelled on me today, she had a meeting and didn't get out in time and she's going on vacation tomorrow. I hope I can borrow someones balls to keep my nerve up 'til next week. The good thing is that I've been journaling a lot and I have to admit, I can write very well about how I'm feeling. Gosh, if someone came across it they would think me nuts! Any way to get out the rage of my kidney failure. I have never failed at a big deal...especially my body ability! That sounds so bad, but thats the way my family was, athletic, and competitive, and always the best. I've failed...my kidneys have failed. There is nothing I can do about it. If I still have the nerve next week, I will ask my social worker if I eligible for specialized care. I' m frustrated because I've finally gotten off the fence, and am left sitting on my butt

[jbeany]

Hang in there!  You can do this!   

[ClarkWard]

Set a course and stay on it!

[gothiclovemonkey]

jornaling is a great idea,
If your like me, and start writing, everything spills out, its a great release, but also, in my case anyway, when i say EVERYTHING, i mean everything, and u should put it in a lock box! sometimes people just dont understand when they come across ur writings and things can become kinda.... chaotic. lol
another good idea i think, pick up a new hobby, or learn something new, to take ur mind off the problem at hand

[renalwife]

When I saw ED I immediately thought of...Eating Disorders.  Eating disorders!  What else.....

Casper, as the old saying goes "admitting you have a problem is half the cure."

I surely hope you can overcome your illness and be put on the transplant list. 

Control what you put in your mouth.  Don't control what you don't put in your mouth.