“SICK OF BEING SHAMED FOR BEING SICK”

[mariacruz86w]

HOW DO YOU MAKE SOMEONE UNDERSTAND THAT FOOD TO YOU IS NOT AS IMPORTANT AS SURVIVING AN ILLNESS THAT NOT ONLY CAN HURT YOU BUT KILL YOU? NO MATTER WHAT YOU EAT, NO MATTER WHAT YOU DRINK, NO MATTER THE TIME OR PLACE, YOU CAN HAVE A SEIZURE, YOU CAN FALL ILL AND YOU COULD DIE. WILL I NEED A PACEMAKER? WILL I FALL SO ILL FROM SOMETHING I ATE AND NEED A FEEDING TUBE FOREVER? IS MY PARTNER GOING TO WANT TO DEAL WITH SUCH ISSUES FROM SOMEONE,WHO IS STILL CONSIDERED YOUNG? UNANSWERED QUESTIONS AND SO MANY THOUGHTS. I’VE TRIED DIETS, I’VE TRIED EATING AND I’VE GONE WITHOUT EATING AND THE END RESULT IS THE SAME,CONSTANT PAIN AND NAUSEA. THERE’S TEMPORARY RELIEF AND TREATMENT BUT NO LONG TERM CURE OR EXPLANATION AS TO WHY. HAVING TO DEAL WITH EVERYONE AND EVERYTHING PRETENDING TO BE FINE, BUT NOT KNOWING WHEN THINGS CAN TURN? HOW DO YOU MAKE SOMEONE UNDERSTAND THAT FOOD CAN KILL YOU? THE ANSWER TO THIS IN MY OPINION, YOU CAN’T. NO ONE CAN UNDERSTAND THE PAIN AND TORTURE ON MIND AND BODY FOOD CAN CAUSE TO PEOPLE WITH GASTROPARESIS. EVERYBODY SUFFERS DIFFERENTLY SOME CASES WORSE THAN OTHERS, BUT ONLY YOU FEEL THE PAIN AND ONLY YOU HURT. OTHERS SEEM TO THINK THAT IF YOU DON’T LOOK SICK YOU’RE FINE. THAT BEING SAID, GASTROPARESIS IS THE DEVIL IN DISGUISE, IN THEORY. UNSEEN, UNKNOWN, INCURABLE, SILENT AND SNEAKY. JUST RANTING SOME THOUGHTS HARD TO BELIEVE.

[bw333]

I am so sorry for U!😢

[hypercat54]

This sounds awful and I don't know if the link can help at all. x

nhs.uk/conditions/gastropar...

[mariacruz86w in reply to hypercat54]

ty

[Sprinkle1]

Hello, I am not familiar with your illness, I have had IBS and suffered greatly. As far as making someone else understand, we Cannot. So why bother. If a person is important in our life, we can offer reading material and hope they will understand. Otherwise do not waste your energy, save it and use if for your ailing body, give Yourself love and understanding, you are the one that counts. Hope my reply is of help. I send you love and healing energy. Sprinkle 1.......

p.s. ask your Dr. for literature that you can pass along.

[mariacruz86w in reply to Sprinkle1]

thank you so much

[mariacruz86w]

I've been coping for 6 years with this illness and thanks to medical canabis i have improved greatly, seems people forget that improvement doesn't mean your cured. I'm new to the forum and found it helpful reading all of your comments and conditions. Thanks to everyone for letting me rant a bit.

[TaraRae]

Hi!

I'm one of your kind. Idk exactly what's killing my organs, I had Hep C for 25+ years and was on trials at the University of Colorado (UCH) and was given alpha interferon, beta interferon, alpha interferon with ribaviron, pegulated interferon with ribaviron and still had Hep C. My Dr, T.Gregory Everson did what he promised, he FINALLY CURED ME with a drug called Epclusa then he retired. I'm still viral load and RNA Hep C free but I was left with cirrhosis and an atrophic, 100% calcified spleen. I acquired chronic pancreatitis in 2006 and it's now called cacific pancreatitis as it has more than 50% calcification, pseudo cysts and it's calcifying in the same manner my spleen did. I UNDERSTAND 100% FOOD EQUALS PAIN EQUALS DEATH!

I've found it VERY hard for people to grasp that food is my enemy. If I eat one thing that isn't "safe" I have a severe attack and get hospitalized. Thank God for pain meds, sadly the US is on a war against opiates and it's not easy to get pain managed. As a dying pancreas, cirrhosis, a whole host of other diagnoses come with me I'm considered a terminally ill patient and can get pain meds. I UNDERSTAND! I have VERY low blood pressure with a very high pulse. I have orthostatic bp, so if I get up too fast my bp drops and pulse goes through the roof and I wake up out of it, passed out on the floor. No Dr's seem to care but this is getting worse. I do have an appt with the pancreas transplant team at UCH next month and that is the only hope I have. If my food intake drops any lower I won't be drinking my liquid nutrition I will get a G Tube. I'm trying to avoid that but it appears inevitable.

Just know that I 100% get what you are saying. I live this life of pain, starving for food yet so afraid of it that I don't eat/drink or give in and end up in the hospital. I'd like to know more about gastroparisis..My therapist says she believes I have that or dysautonomia. Idk but I do know about food=pain=death.

Hoping to hear back from you,

TARA

[mariacruz86w in reply to TaraRae]

the test to know for sure is a gastric emptying study ita painless and helpful

[mariacruz86w]

the test to know for sure is a gastric emptying study its painless and helpful

[TaraRae in reply to mariacruz86w]

I have never heard of this. Are you in America or elsewhere? I'm so tired of no food, I miss food but it's just so hard for me digest. Is this test like a colonoscopy?

Thanks, Tara

[mariacruz86w in reply to TaraRae]

no they fed me scarmbled eggs infused with radiation but tasteless radiation makes it glow on the mri scanner they can see how long it takes for your food to digest and I'm in Florida

[TaraRae]

Thanks! As I'm always at the Dr's office I will mention this to her. Thank you!

[Lazy_dog_lover]

Ok, wow, I am glad you could vent that all here. I do not know much about gastroparesis.

Who are you trying so hard to convince? A true friend or a true partner would not care. Sometimes these people are not ones you intentionally seek out, but become part of your life, see you for who you are, and love you anyway.

Stay safe.