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Thank you to my SP friends

Monday, August 29, 2011

I know some great people here on SP. There are some really wonderful people who show me support in my battles with my health and everything else going on. I absolutely appreciate the wonderful things you say and do for me.

It's sad to think that the so-called friends I know IRL can't be even remotely as supportive as you have been to me. Some of them I've known for years, they didn't care last year when I basically was forced to stop eating for a month because of my DTP. None of them even asked how I was after several days in the hospital. None of them even seem to give a rat's behind to learn about my condition. It's not like I ask for much from them, only to actually care for a few moments every once in awhile. I can go six months or a year before seeing any of them. I'm there to help them whenever they ask, but get nothing in return. Why do I ALWAYS end up with 'friends' like this? I'd throw them all away, but then I would be absolutely and completely alone.

Sorry to my SP friends for so much whining the past two days. I'm just so dumbfounded by the way those people have acted towards me.

Melissa - Thank you again so much for helping spread the information about my Tubie Duckies and DTP. I never could've gotten that much exposure without your help.

Amy - Your kind words are always appreciated. I do wish we were closer so we could spend time together and be there for each other.

To all my friends, known for months or new, I'm glad not everyone is as apathetic and uncaring as the people on facebook who say they're my friends. Supporting others in an unkind world is the best way to prove the goodness of humanity. My thank yous are heartfelt.

Yes, I realize this seems like a goodbye note, but it isn't. Sometimes we need to step up and just say thank you to those we care about and remind them how much they mean to us. I hope all of you who support me realize that you mean more to me than many of the people I come across face-to-face.

  
  Member Comments About This Blog Post:

MANDI99P 8/30/2011 11:31AM

    Hun, you are the most caring and selfless person that I know, and it breaks my heart to know that you don't get the same support that you give so freely. I feel truly blessed to have you in my life, and sometimes I feel like you are the only one in my corner, but that is enough to get me through. Always remember that there are those of us out there that carry your love in our hearts. If your so called friends IRL can't see what a wonderful person you are, they don't deserve to have you in there lives.
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ANDREWS_MOM 8/29/2011 8:03AM

    emoticon emoticon emoticon emoticon
You're a real doll, sweetie! It's too bad that people IRL don't get it....it's there loss. Hopefully someday really soon that special person who does "get in" will shine right into your life. Lord knows you deserve it and please know you are worth it!
love ya lots my friend!!


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Wow I feel so alone

Sunday, August 28, 2011

Today was the last day of DTP Awareness Week. I've posted things in my facebook and SP status about DTP, on facebook I've posted videos and links to articles and blogs, on SP I've posted blogs and information on the Gastroparesis team, I've made Tubie Duckies as a unique way to get the word out, and I have told probably 10 people I've randomly met about DTP and GP. I also tried to get a friend who is a reporter to do a story, but last I heard she hasn't even heard from her editor if it can be done.

With all the effort I put into this week, while still working 8+ hours a day and doing all the things I have to do during a week (grocery shopping, errands, etc), I ran out of time to sleep. Due to lack of sleep, by Tuesday night my GP/CIP flared and I was having a hard time digesting again. On Friday I got a massage, but it didn't do as much as I wish it had (since my massage therapist left, no one else has been able to duplicate what she did). Today I was able to sort of digest again, and was closer to the calorie intake amount I need to maintain my weight. Yes, this was terrible for my body, but it was almost worth it because of what I was able to do to get the word out.

The problem is, I didn't see people without the condition stepping up to help spread the word. As I mentioned, the friend I asked if she could do a story waited a week after I first asked her to submit anything for approval. Now awareness week is over. None of my friends (I should probably call them acquaintances) reposted or even mentioned DTP. Chances are only 2 or 3 even read what I posted. I haven't counted on any friends in many years, but it just emphasizes how alone people can be when having a chronic medical condition. My family isn't helping (I'm not speaking to my mother and my father isn't happy about that, my sister and BIL are too busy, and I haven't seen any extended family in several years), obviously the friends on facebook aren't interested in helping, and I haven't had a boyfriend in 11 years. So other than the friends I've made here on SP, I have little to no support. Sometimes I want nothing more than to just lay down and not move and ask someone else to take care of me, but no one is there. Sometimes it isn't exactly safe for me to be driving because of my health, but I have no choice. Sometimes I just want someone to hold me while I cry and lie to me that it will somehow be okay, but there's no one willing.

Now that the MN state fair is going on, the news keeps talking about all the foods I can never eat, added to all the commercials of foods I can't eat, and I just want to scream that they are seriously lucky to have their health but look at the absolute GARBAGE they're filling their bodies with! So many movies I watch have themes of relationships, family, and how much someone is cared about - something I don't get to have. It seriously hurts that I am in a daily fight for my life and I have no one willing to help me. (Please note this excludes my friends here on SP, but you have to admit it's hard to help me in the ways I need it over SP. Know I do appreciate the support no matter what.)

Rhetorical question: Why don't I have family or close friends or someone to love me and help me fight for my life?

  
  Member Comments About This Blog Post:

CTUPTON 8/29/2011 9:40PM

    I just put your tubie duckies on my facebook page with a link to a webpage about digestive system paralysis. Hope it helps to "spread the word."
Search FB for Chris Upton

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CTUPTON 8/29/2011 9:19PM

    I am sure by reaching out like you are doing, people will come! I am dealing with fibromyalgia and probably a number of years ago no one had heard of it. Now it is almost a fad. I am sold on sparkpeople to get support! And even the internet itself. You can invite interested to SP and start building a community. Don't give up. You are brave to be reaching out. Thanks for identifying your need! Chris emoticon emoticon emoticon emoticon emoticonand more emoticon

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AYLEA56 8/29/2011 8:35PM

    I have Gastroparesis, Lupus & Sjogren's I have compassion and empathy for you. I use to have lots of friends some of them I hear from once in awhile. Though usually only if I call them. My parents do not live close and are in there 80's. They do not quite understand though are concerned. I am fortunate enough to have my husband who loves me and does take care of me.

Here is where it hurts to know you have no one like that to assist you through those really bad days and to smile and laugh with you on your good days. You do have those of us on SP that truly understand. But until someone really gets how much it hurts to try to eat something they truly miss they will never understand.

Know that I wish and send good energy your way for someone to come into your life to be a good friend and companion. One whom is there to physically hold and comfort you.

Take Care and
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PETRESQ1 8/28/2011 7:24AM

    Hang in there, you've got alot of people that care, at least here on Spark....It's such a great community. I'm not close with my family either, only one I can depend on is my Dad, but he's diabetic and depending on how he eats he can have his sore moments too. Many of my older friends have passed away in the last few yrs, and I never really made alot of friends my age. So I value all the internet friends I've made here while I fight to get my own body under control. A battle I've been slowly losing in the last twenty yrs due to medical issues, sucks to get old. But in the last 4 months, thanks to a great nutrition Dr, I've got the weight on the run and down almost 50 lbs. Anyhow, just know you have friends here at Spark, and anytime you need to talk I'm here. (Especially if it's about Supernatural.) Thanks for informing me(us) about DTP. emoticon

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IVORY1825 8/28/2011 5:44AM

    That's too bad. I should let you know however that my blog post got retweeted again by some members of the Geek Girl community, and the total views on that page is at 311. Forget people IRL, the internet rocks.

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HOWDOIHEARTTHEE 8/28/2011 3:32AM

    emoticon

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CANNIE50 8/28/2011 1:10AM

    I am sorry to read this. I hope this is just a season in your life and that you are able to reach out and gather friends and loved ones. It must be terribly difficult given your pain. Please take care.

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People can live without eating - including babies

Friday, August 26, 2011

Yes, humans can live without eating. I know you don't believe it right now, but I challenge YOU to watch this video without crying.

www.youtube.com/user/GPACT?feature=m
hee#p/u/12/A5mng5DqiU0


Millions of Americans (and 10s of millions around the world) are living proof of what a person can accomplish without eating 'normal' food. People like us are eating special diets, liquid diets, or are being 'fed' through feeding tubes and IV nutrition. Digestive tract paralysis (including gastroparesis and chronic intestinal pseudo-obstruction) is a serious and debilitating condition where the digestive system doesn't have the ability to process food correctly, or sometimes at all. There is no cure and absolutely no one is immune. By learning about this condition you could help save the life of someone you love - or yourself - because many in the medical community don't understand it and this causes a delay in diagnosis for weeks, months, even years!

www.g-pact.org www.facebook.com/GPACT

NEVER take your health for granted. One day you could wake up to find your life turned upside-down with a severe medical condition and then it could be too late.

  


Today has been tough, but it could be worse.

Thursday, August 25, 2011

I'm feeling awful today, haven't been able to eat much yesterday or today, and it has totally worn me down. Yet I still went to work and did everything I could. Why? Because I'm still better off than many other people who have DTP.

Last Friday the G-PACT family lost a member in Australia - this was the first day of DTP Awareness Week and not the way we wanted to start it off.

A family in Mississippi with the father fighting overseas has had their son taken away because an uninformed doctor claimed they were abusing and neglecting their young son because he was malnurished. This doctor refuses to believe that DTP exists. Social Services has said that the foster family should take away the pediasure that is his best source of nutrition. Luckily, the foster family isn't completely taking it away and has tried to tell the courts the boy does have some kind of digestive problem (though they don't understand it). Are the courts or doctors listening - of course not!

Yes, I feel completely awful today, but I'm still doing better than many others who have the condition. So I'm doing the best I can to make it through the day.

  
  Member Comments About This Blog Post:

ANDREWS_MOM 8/26/2011 8:32PM

    It's insane that people refuse to believe that this condition exists when there are nuclear medicine scans to prove its existence.

I am so sorry you are feeling so sick. I have had a flare up since the begining of the week but not as bad as it usually can / does get.

Hope you feel better!
hugs

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Tubie Duckies are flying north to DuckNation!

Tuesday, August 23, 2011


My Tubie Duckies are on their way to Canada and the SPN DuckNation. I sent it out UPS earlier this evening and they should arrive early next week. I included a letter explaining them in an envelope labeled "What are those things sticking out of the ducks' bellies? See inside for an explanation of these Tubie Duckies." Here's the letter I sent (it is long, but it didn't feel right to take away any of this information, as it would dull the importance of the DTP Awareness Week message.


Clif Ė
Pretty cool idea starting up DuckNation! I looked all over to find rubber duckies in stores, but couldnít find much. The more I looked, the less I was interested in sending a duckie untilÖ The other day I was looking at pictures of the duckies in one monitor while using the other monitor to talk to people in a group for gastroparesis, a medical condition I have. Somehow the words ďtubieĒ and ďDuckieĒ got in my head at the same time and thus the idea for TUBIE DUCKIES was born! Why Tubie Duckie? Because of a simple reason: millions of people are being starved every day while they have full access to food, because their digestive systems arenít working.

Gastroparesis (GP) literally means ďparalyzed stomachĒ, chronic intestinal pseudo-obstruction (CIP) is paralyzed intestines, and together these are referred to as DTP, digestive tract paralysis. When there is damage to the vagus nerve, signals canít get from the brain to the internal organs, so food sits in the stomach and/or intestines longer than it should, preventing further eating and causes other health problems. There is no cure, the treatments dull the symptoms but can cause just as many problems as they help, and not eating to avoid extreme pain isnít an option. Some people (like me) are Ďluckyí enough to just change how, what, when, and why we eat (low fat/low fiber diet, eating tiny meals up to 10x/day), while others can never eat or drink again and must be put on feeding tubes or IV nutrition. This is where the term ďTubieĒ comes from - it is a nickname for kids who are put on alternate nutrition.

The most difficult part of DTP is often getting the diagnosis. Many doctors have either never heard of it or donít understand it, so it can take weeks, months, or years to receive help. Friendships and relationships are tested because the general public hasnít heard of it Ė there arenít commercials, pamphlets, or biology classes that mention it. Most people first hear of it when they or a loved one is diagnosed. The scary part about this is an estimated 8 MILLION Americans, 1 in 25 people, have some form of DTP!

There are no risk factors. There are no symptoms until itís too late. Thereís no preventing it. Absolutely anyone can find themselves with this condition; it affects all ages (even 2 day infants), races, socio-economic levels, body shapes and sizes, and fitness levels. Causes stretch from a simple virus to a head/neck injury to gastric bypass to no known cause whatsoever. No one is immune!

G-PACT is the non-profit organization helping people with DTP to navigate this condition. G-PACTís DTP Awareness Week (Aug 19-27) will be over by the time you get this, but Iím still participating in order to help spread the word in hopes of reaching out to those who are affected and donít know where to turn for help, and to inform the public that this condition exists. Doctors couldnít even explain gastroparesis to me when I was diagnosed and I donít want others to feel the fear I did at facing this condition alone. It would mean so much to me to have information about DTP/GP/CIP posted with my Tubie Duckies.

www.g-pact.org
www.facebook.com/GPACT
www.youtube.com/user/GPACT

I would like to take Tubie Duckies beyond DuckNation and find a way to make hundreds (or more!) to give to kids who have feeding tubes (Tubies) so they have a little friend who is just like them. As you can see, Iíll have to come up with a safer idea for the tube, but Iím hopeful this will happen!

Thanks and Go DuckNation!

  
  Member Comments About This Blog Post:

KKSTEIGERWALD 8/24/2011 8:17PM

    What a wonderful idea!

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