1STATEOFDENIAL   131,245
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This is me venting.

Thursday, January 06, 2011

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Warning: The following is me venting. If you don't like to read someone venting their feelings about what is going wrong in their life, then please stop reading now. emoticon




Anyone who doesn't know what gastroparesis is, my stomach empties too slowly, so I must have a low fat, low fiber diet. If I eat incorrectly for even 1 day I can get really sick. I also have GERD and have been treated for eosinophilic esophagitis - which closes off your esophagus - but it could, and probably will, come back at any time without warning. I am about 10-15 lbs above being underweight but I keep losing weight because I can't get my body to accept enough food. (To those trying to lose weight, I'm sorry if this upsets you. But having your own body starve you is not good, not fun, and not something you should hold against me.)


Things that have been said to me since I was diagnosed with gastroparesis:

*My sister: No wonder you can't get a boyfriend, you burp like you're throwing up all the time. It is disgusting.
*What I tried to tell her that she ignored: My burping is because of my gastroparesis and GERD. If I don't burp, I will get a severe stomachache or throw up. You only have to see me for a few hours at a time, twice a year. I'm sorry that even that is too much for you to handle.

*My mother: You're on a low fat, low fiber diet, right? So here's a bunch of snacks you can have. There isn't any fat or fiber so you can have as much as you want. (She gives me several huge bags of junk food and fully expects me to eat them all in a few hours.)
*What she refused to hear: A low fat, low fiber diet does not mean I should just eat everything that doesn't have fat or fiber. Eating lots of simple carbs will make me feel tired and worthless. I have to have some fat with every meal, and some fiber every day. I just have to have them within a goal range. That is why I am tracking my food so closely. Please don't force junk food on me to make you feel better.

*A new coworker: So many people at my gym are just lazy. They definitely don't work out to exhaustion. I burn 200 calories in 6 minutes; you burning 200 calories in a half hour is a joke. I'm borderline obese but I'm eating Subway and Jimmy Johns now instead of McDonalds or Burger King so I'm going to lose weight. I am too busy to cook, and cooking for one person is not worth it. So hey, why don't you come out for happy hour and eat wings?
*What he is not getting: Everyone has different fitness levels. Working out to exhaustion is not a good thing. Burning 200 calories in 6 minutes is seriously doubtful. When I can barely get 1500-1800 cals/day, burning 200 is probably more than I should be doing. And Subway and Jimmy Johns have many really bad choices - which happens to be the things you appear to be choosing. And offering to buy me drinks is not the way to get my attention.

*What a 'friend' told me: She doesn't want to deal with my sickness anymore. It is my problem and she is sick of hearing about it. Why am I working out if I can't eat enough? I should eat a bunch of foods at night that are nothing but carbs so I can get more calories... because I'm lucky that I can eat as many carbs as I want.
*What I'm too angry to tell her right now: I have always done my best to be around when you need someone to talk to and support you. I have stuck my neck out and trusted you, believing you would be there for me when I need someone. But it seems you're there when it suits you, not when I need you. I hoped you would support me, but I'm not seeing it. What I am seeing is that you are too busy waiting for the mirror to say you are the most beautiful woman in the kingdom, and ignoring me when I tell you that every time I see you. Don't blame me for you feeling negativity when you throw it at yourself every day. But strange thing, I don't remember you turning it around and saying I'm beautiful, intelligent, kind, etc. Instead, you make it clearly obvious that you are jealous of me losing a lot of weight very quickly without trying. Apparently you are not getting the fact that my digestive system completely shut down and I was unable to eat more than 400 cals every 2-3 days for a month. I've been told I should not have lived through it. If you are that desperate to be thin, give it a try and see how you feel.
*What she needs to hear: You have said that you push people away, but then you are upset when they are gone. You say you want to know what people think about you so you can change, but you just get pissed off and hold it against them later. And remember a few months ago when you threw a fit because no one would go to an event with you? I was trying to support you by saying that you should go by yourself and see that you have the ability to be independent and not expect others to make you happy. You got seriously pissed off at that, chewed me out, then refused to speak to me for days. Again, don't blame your negativity on me when I have tried to support you and help you! Telling me that I cause us to get into pissing matches about who's life is worse is crap. When I try to come to you for support, you have to one-up me every time. I try to refocus so I can get the support I need and you turn it right back onto you! Plus, this whole thing about saying you can't deal with my sickness, blaming me for making you feel negative, and then saying it is up to me to decide if I want to fix myself and continue to be your friend is completely wrong. Maybe I shouldn't deal with the fact that you are constantly putting yourself out there to get attention from men, just so you can get pissed that the wrong ones are hitting on you or that you aren't getting drinks handed to you from every guy in the bar. Maybe I shouldn't deal with the fact that you are too self-centered to have shown even an ounce of concern that I should have died, let alone taking 5 minutes to learn the tiniest bit about what I'm going through.

In the past week, I have gotten the coworker and 'friend' comments. My therapist cancelled on me after I already couldn't get an appointment for 3 weeks. My masseuse cancelled on me. I've had people try to force me off the interstate (which is a common occurrence but still scary as hell) and nearly caused me to crash. I got a notice in the mail that I am required to go to a city meeting and set up a house inspection for sewer problems - which is going to cost me a hell of a lot of money to fix, if a fix is even possible. I end up spending 20-60 minutes every night cleaning snow off my driveway and sidewalk in single degree to 20 degree temperatures, and almost every time lose the feeling in my hands, feet, and legs for an hour after I'm done. I can never seem to get warm because I'm losing my body fat so I can't regulate my body temperature. My car is starting to show signs that I will have to replace it soon (which I absolutely can't afford). When I eat some foods that should fit into my gastroparesis diet my body is reacting badly to them and I end up in a lot of pain, so now I'm getting scared to eat again. I really want to exercise, but I can't do much because I don't have enough calories to burn.

The fact that I have no support from my family or friends is incredibly painful. It reminds me how many people believe I am less than human or have made it clear they believe the world would be better if I was dead. It reminds me why I end up in massive shame spirals and have no self-esteem. Then I start asking the question "why am I never good enough for anyone to care about... let alone love?"

  
  Member Comments About This Blog Post:

MMAKAZIPPY 1/7/2011 10:27PM

  Wow, there is a real lack of support and misunderstanding in your life. I am glad you have people on here that are experiencing some of the same events. My gastroparesis is stress related which is likely easier. I belch frequently and it is quite embarrassing. I have made a point of avoiding foods that cause more belching and taking simethicone to aid in burping (quietly!). I haven't lost a lot of wight d/t my sweet tooth and my ability to digest cookies and brownie w/o symptoms. It does not help that typical health foods are not an option and I don't really know how to eat a healthy low fiber diet.
You know that these people are out of line and speak out of ignorance and thoughtlessness. It does not mean you have less worth or that you deserve that kind of response.
I hope you will continue to educate others on gastroparesis when you are able to. It will make life easier for the next person with gastroparesis that comes along. emoticon

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1STATEOFDENIAL 1/7/2011 10:03PM

    Thank you all for your support. It means so much to me to read your kind words.

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MOM2ACAT 1/7/2011 4:25PM

    emoticon I have had GERD for years, and just last month was diagnosed with gastroparasis. My doctor doesn't want me losing any more weight. I get frustrated with people telling me I need to eat things like chocolate. They don't understand that I am trying to get enough calories in to maintain my weight, but I can't eat just anything and everything and not get sick.

I am lucky though that most of my friends and family are supportive and understanding about how I have to eat.

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MRE1956 1/7/2011 7:18AM

    Hey, at least you have your fellow Sparkers who understand your situation - you may want to limit contact with those so-called "friends", and, yes, even family if they continue to behave toxically towards your - your sister's comment wrt "boyfriends" especially concerns me as, IMHO, that subject in and of itself is not the be-all and end-all of a person's worth on earth......

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DELTAGAL65 1/7/2011 12:17AM

    MY heart goes out to you. Venting is good, and necessary to gain balance. You can chat with me any time you like (Smile)

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WHITEANGEL4 1/6/2011 11:57PM

    Venting is good for you and we are hear to support you in all things.

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It might not be their fault.

Wednesday, January 05, 2011

I have a rant I really want to toss out, but I'm so upset right now that I'm afraid my raw emotions will offend a few people. Which I probably shouldn't worry about, since my rant is about how I feel offended. Still, I think I want to hold off posting this rant until I have had time to calm down, write it out, then chop it down to what I really want to say.

So for now I will toss this out: before you judge someone based on your own beliefs and what might be true for you, close your mouth, close your eyes, and imagine everything that could be different for the person you want to judge. You don't know their situation and their life, so don't blame them for what you don't like about them - it might not be their fault.

  


Misperceptions do not make the woman

Monday, January 03, 2011

One thing that annoys me is how easily misperceptions happen. Some people believe they know me and know what I'm about. Their perceptions are so misconstrued that even if I tell them the truth, they refuse to believe me.

For instance, some people want to believe that I'm this crazy health nut - they refuse to believe that if I don't follow a low fiber and low fat diet, it can kill me. They hear I've lost over 25lbs in the past year and refuse to believe that it happened without me wanting to and without trying... my digestive system shut down and I was unable to even swallow water some days. When I try to explain my diagnoses (gastroparesis, GERD, and eosinophilic esophagitis) they tend to tune out because they see it as unbelievable or too much to take in... try having to live through it. Having health problems starve you, desperately wanting to eat anything, everything, something, can destroy everything you believe in.

Then there are plenty of guys who can't see the real me. Some think I'm easy then get mad when they find themselves to be wrong. Some think I'm a prude then are pissed if they see me talking to another guy. Then there is the one who seemed to believe I was happy being completely independent since I've done it so long. Also too many figure if I can be completely independent, then they may as well live off me and make me support them.

So when did I lose the ability to show who I am? Or did I ever have the ability in the first place? Then again, do I even know who I am?

I am forced to be independent because no one has been willing to step into my life to be there when I really need it. No one has loved me the way I need to be loved. And I can't hibernate in my life waiting for someone else to move my life forward - so I must move myself forward. But I hate being forced to be independent. I want someone to lean on. I want someone to count on. I want someone else who will clean the massive amounts of snow off the sidewalk so I don't have to.

I am as healthy as I can be at this moment. GP is difficult to figure out, and sometimes it seems to act up for no reason. I am better than I have been in a long time, possibly ever. I am doing my best to figure this out and work with my body, not against it. I want someone who will support my GP diet and life, knowing this is what I must do to live. I want to be around others who choose to be healthy... or at least won't try to force bad choices on me.

I am doing what I can to make my life better, and to attempt to have the things I want most out of life: a loving family and a nice home. I can't force it to happen, but I can try for it and hope it will happen. I want to find a guy to share these hopes and wishes with.

So I have an idea of who I am and what I want, but using who I am to find what I want isn't working well. Unfortunately, I'm not sure what else to do.

  
  Member Comments About This Blog Post:

1STATEOFDENIAL 1/4/2011 9:43PM

    The worst of it is that the 2x/year I see my sister she rags on me about me having to burp a lot all night. Trying to explain that it happens because of the GP and GERD and that if I don't do it I end up in massive pain doesn't help. She has said that the fact that I burp is the reason I don't have a boyfriend. That is incredibly hard to take. My mother's idea of support is to supply me with any food that has no fat and no fiber... basically pure empty carbs. Then she got upset that I didn't eat bags of junk food. It drives me crazy that my family can't support me.

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MOM2ACAT 1/4/2011 5:29PM

    I also have GP, I was just diagnosed a month ago. I haven't had anyone question my diet yet, but there are some people that have a hard time understanding that it's not a curable condition, but something chronic and lifelong.

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