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needed to vent


Gwem
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I need to vent...

I am so frustrated and upset with all these symptoms. I can't handle the stress of being in pain EVERY time i eat and try to do anything. I had ONE day in the past 3 where I actually made it to the store and FINALLY drove again on the highway and around town with my dad. (being 20 this is kinda pathetic for a typical 20 year old but oh well) anyways...I have been so sick lately. I went off the zelnorm because my intestinal and stomach pain was so bad on it..plus it made my other symptoms worse than usual..it's like it escalated every dysautonomia symptom i get. Every time i'm eating i'mgeting so sick that literally after a few bites if i go the slightest bit too fast my head, particularly on the top of my head near the back starts to get a "tingling" feeling and then i start with a headache and my intesinal and stomach bruise/bloating pain kicks in and then my hands and left leg start to get weak. It takes me over an hour and a half to finish a meal. It's so aggrivating and upsetting and frustrating. Plus I have to try to eat inbetween meals on top of constantly feelinghorrible. Today I couldn't even get dressed or move all that much and by after lunch my whole body nearly collapsed and was completely fatigued and i had the usual tingling in my face, headache, intestinal and stomach pain, heart pain, and weakness in my legs and hands also i was insanely cold aside from just having cold hands and feet after i eat which is always a given. I cannot stand this, i try my best. I get so frustrated because I try to finish my snacks and stuff in between meals and i get so sick that i end up laying down or scrunching up in a ball at the table becuase i'm in so much pain. Then I get comments from my family like "you have to want to help yourself, i dont see that i don't see you trying" I AM TRYING I FEEL LIKE SCREAMING! And I called my gastrointerologist yesterday because i didn't know what to do and he calls me back today with no answer other than that he has to wait until i have my neurological testing done. so in the meantime i just have to suffer. this is so aggrivating. I know that things could be so much worse and so many people, especially children go through horrific things and i shouldn't complain. I just had to vent. if anyone else experiences this type of frustration feel free to vent back or comment.

thank goodness for this network.

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Gewm, Im sorry that you are having such a tough time and that your family isnt being supportive. They just dont know what you are going through. If they could just walk a day in your shoes they would change their minds. I hope that you find some relief soon.

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:angry: gwem am so sorry for your troubles. have you tried boost or ensure or something, just as a supplement that might be alittle easier on your stomach? i drink stuff called soy silk and it seems to go down fairly easily. i have lost 35 pounds and have basically a non functioning esophagus. i find that the soy silk, (which is just a soy type mild fortified with vits and stuff) doesn't upset my stomach so much. it's not as rich as boost or ensure, even tho i do drink boost for the calories. you can get it at costco. you might try just really bland foods like cream of wheat, bananas, applesauce and stuff, things that are not so hard on the stomach and easily digestible. morgan
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Sorry you are going through all of this - I've been there, done that. I was SO lucky that my family was far away and all I had was my very-supportive husband. I think I lived for months onoatmeal and tomato soup - very small amounts of each. I really had to look around for anything that would stay down and not cause pain. I had a tough time being stuck in bed for so long, too. My dad and mom (who don't live around here) keep wondering why I don't work. My ex-husband has told my son that I don't work because I'm "lazy". My husband can't work due to a head injury. At the time of the injury (plane crash) his family was determined he was going to be okay - and wouldn't let him apply for SSDI. He went back to work at various things in the ensuing 10 years then we got married. His condition was deteriorating so after our marriage I supported the family. When I got sick we applied for SSDI at the same time. In the past 2 years we have had MANY changes, and through the grace of God we have survived. We are still struggling for the SSID - for either of us. He is making $50 a week preaching at a small local church and many times these wonderful people have made our rent for us.

I suppose I feel - as I'm sure you do - that I have really hit a low point and this is when I need to be really strong. But I feel like I am not strong enough to cope with this condition AND the things society (and family) expect of me. I tell myself that what doesn't kill me will make me stronger!

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wow, after these horror stories i read about ssdi, i feel so blessed that i got it! i am sorry for everybody who is struggling so hard. when i first applied we almost went bankrupt and even tho what i make is only about 1/3 of what i did, we are certainly lucky to get it. sometimes, although i would not wish this on anyone, i do wish the people in power would have to deal with this for a few months and then maybe things could change. it seems that the michael j fox's of the world are a lot less than the morgans and debs etc. they at least don't have to wonder where their next meal is coming from. i'm glad you have a supportive church tired and i totally understand about family. it's just my little nuclear family here to deal with. good luck and keep fighting for that ssdi, they want you to give up, so just say no. morgan :angry:

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