... like you're from Mars, say they've never heard of such. My doctor tells me to explain it as a paralyzed stomach. Then they really look at as if how could anything be wrong with you? You look healthy as a horse. There's nothing wrong with you, you're just seeking attention. How do you handle inconsiderate humans like this, esp when they are your own blood kin?? I wish I knew anymore. I'm so tired of it already. And I was just diagnosed July 15th this year
Tee... I am so sorry you are not getting support from friends and family re: your condition. Gastroparesis is a REAL condition with various causes. You can have it from certain medications you are on, from surgery, and from many different conditions. As Christie says... people can be just plain ignorant... especially when they have no clue what they are being ignorant about. There are many conditions from where you look perfectly normal and healthy on the outside... diabetes, hypertension, ulcers, cancer... and many, many more. Just because you look fine on the outside does not mean that you are healthy on the inside. Just just tell them that when they express they don't understand your condition.
You just concentrate on getting better and don't let those bone heads get you down. Please come back here when you need some uplifting... OK??
I will keep you in my prayers...
Thanks Christie and Pup. It means a lot, and Im glad I found this group here on DC. At least I dont feel terribly alone, but still it hurts. My dad lives 33 miles away, and has been here several times to visit. His wife has cancer. My own mother & sister live together with her teenage son, and they havent been here since my daughter's graduation in June. Mom has been here 2x since I was hospitalized in June. My sister never came. Never has, never will. My sister/law was there when I woke up from my nap while I was still in the
ER. She lives 2 hours away and got there at 8 in the morning. My own blood sister never called or came by one single time. And my mother and sister say Im the one who is a crazy hypochondriac!! 'But everyone here has problems and mine are just a drop in the bucket so I shall stop now and leave alone. I thank you all for your support and understanding.
In search of peace,
Teresa (aka Tee6759)
The reason for that is because as you can see, some people can be complete morons. They don't take the time to find out about what the person is going through. Just because you've never heard of an illness, doesn't mean it doesn't exist. Just because you look healthy doesn't mean there might not be anything wrong. There are a lot of illnesses and injuries that are not physically obvious. I think that's why I haven't told my family about my GAD and depression, because of what you're going through with your family. The only ones that know about it are the people that count, my husband my daughter and of course you, Tee and all my friends here on this site. Don't worry about the other people, you've got people in your life that know what your going through and that really care and that's all you need
I know just what you mean, if I hear "You look great, you must be feeling grea too" one more time I may go completely ape sh^t on someone!!
At this point all I can say is, GO APE sh^t !! Have yourself a little meltdown over this, the next time someone (a complete moronic eejit no doubt) says something, let 'em have it gurl !!
You can get pamphlets about your disease from your doctor and mail them to your rels that don't quite "get it", mail them to your friends too!! Hells bells girl, mail them to coworkers while you are at it!!
Sorry, I really didn't mean to explode like that!
Whoa!! I need to take a break before I go off on someone!! LOL !!
Hope you have a great day Tee!!
Teresa, I completely understand how you feel. All of my conditions were not visable for years! Until my bones started turning(my fingers) sideways, & my back getting a alight hump, but people still give me funny looks when I use a handicap space. Ohif they only lived in my body for 24 hours! My hubby & I had a experience that I think wil give you a chuckle. He is also very disabled. We parked in a handicapped spot in front of a store, & a big old lady was resting on a planter in front of the store, When we walked by here she just had to make a remark. Said"you 2 don't look handicapped to me"! "I should call the police & turn you in". Well I think you know me enough by now, I was ready to tear into her, but my hubby put his arm ought in front of me & politely reached into his pocket & threw her a quarter. Then he said "here, I will even pay for the call!" I about rolled in the aisles over that one.
She just looked so dumbfounded she didn't answer at all. Just stared at us like we were from another world. I laughed the whole time I was in the store.Just laugh them off girl. You know how you feel, & what is going on. Don't worry about others thoughts so much. My hubby taught me that. He told me if it ever happened again when I was alone, (& didnt have a quarter) to start listing all my illnesses & walk away. It's not your responsibility to let every one know how you are. If they cared enough they would find out for themselves. You could print out a bunch of copies about the disease, & hand them out too. Just tell them you don't have the time or feel well enough to explain it to them so Here, read about it. Might change their attitude. I wish you luck my friend.
T I know your condition is real and I know how hard it is to not have a family who support you. But you have your husband and daughter who love you very much. Like Pup said people can look fine on the outside and still be very sick. YOu are going thru a hard time right now and please get rid of the stress like I told you. Its not easy but you have to say I'm more important than them and I'm not dealing with this anymore, I'm going to work on ME!! Von
Hi Tee, I am late on this question. Most people, well the majority of people have never herd of Gastroparesis, mush less how it can hurt. It's just like my bipolar illness, if people can't physically see it they really don't think there is much wrong. Are you Diabetic ? That can be a big problem. The pylorus is at the distal portion of the stomach, is a round muscle that contracts when the stomach is empty. It is sometime called pyloric stenosis. The exact cause in unknown. It causes havoc with sugar absorption. Some time if you lay on your side, with your right side down it may help a little on emptying your stomach. Treatment varies drastically, from A pyloraplasty, surgery to make the pylorus larger.(that has it's on set of problems ) to total gastroectomy (Removal of the lower 1/3 of the stomach ) Medical treatments are few, Erythromycin (an antibiotic) Some Drug Metoclopramide. Serotonin Antagonist that acts on the receptors.
And the new one Botox, they inject botox around the pylorus that paralyzes it. I am so sorry your family is so judgmental. No one cares much any more about others, it's all me me me. I will try and learn more about your condition,you really jogged my memory on this one. See ya Dave
You can't win-either you're weak and want attention. If you have a good day-you work too hard and make yourself sick. It's not just family-this includes medical staff. family members that don't understand that you might faint, or certain foods make you sick-are very self-centered and lack empathy. My daughter is like that-but she takes advantage of her brother a disabled vet. She calls him up and complains about her problems-that she took care of her baby brother and owes it to her-calls and calls. I found out that she got about $7,000 from him when he was having lots of medical and family problems. Sometimes I think that some people are scared that it could happen to them, if they can blame the victim, then it won't happen to them. This is something learned in psych 101.
Hi Teresa! So nice to meet you! I'm very sorry about your health issues & your other situations.
I've been ill for over 3 years, still don't know exactly why, no specific diagnosis, don't look ill except when I'm walking or standing sometimes (but I haven't fallen YET! LOL)
I'm in a different family situation than you so I figure that it's partly due to age. I've been independent (well, used to be LOL) & left home when I was 17. I'm now 55. I own my 3rd house (well, technically I own 3 doorknobs & a door, the bank owns the rest LOL). I'm telling you these things to let you know that I can empathize with you. I have chronic pain even though I was a pretty healthy individual until 2008.
My suggestion is to concur with the other contributors here who have said to dismiss those people, don't pay them any heed. They are ignorant & uneducated. Even though I was never really sick before now, I'd heard of gastroparesis. Plus, if they had studied Latin in high school, they'd have been able to figure out what that word means. So that's just what it boils down to.
Now, for the other part with your sister not visiting you, that's something I suggest for you to speak with her about. That's the only way that you can attempt to get to the crux of the situation & even then she may not be truthful. In my personal experiences, if someone doesn't care enough about you to talk to you or visit or keep in contact, then it's time for you to focus on the ones who are with you or do care about you. Focus on the present & not the past, focus on what is in front of you & not what you've lost. In other words, live in the now.
Try to think of all of the positive aspects such as: your immediate family, you have a doctor, you have a diagnosis now, you have a treatment plan, & Teresa, by the way, you look GREAT! :D
Expend your energy & love on you & your immediate family & getting better. Everything else will fall into place if there's even supposed to be a place for it.
Focus on YOU! :)
All the best to you, Teresa, on your road to better health & happiness!
from Wendy :)
Hi T! I just joined this site and this group and was so surprised to see a question about gastroparesis! I am a type 1 diabetic and as a result of neuropathy have developed gastroparesis. What a horrible condition; my heart goes out to you big time! I read your profile and can also relate to your family situation! My god girl you seem to be in such good spirits for what you are dealing with. Thank god you have a loving husband and child to give you support! For what it is worth I am a fellow sufferer of gastroparesis and will keep you in my thoughts and prayers every day. Oh, and on bad days when you can't eat... Try (my favorite) lots of jell-o and broth helps too! I'm glad to hear your getting your pacemaker and can't wait to find out how it works for you as it is also an option for me! Lots and lots and lots of LOVE & HUGS!!! LoLa
Hi Tee, i dont have the same diagnosis as you but hell, i know how you feel and how annoying it is for people to look at you and judge you as if you are a hypochondriac!! I have been put to the back of lists, received care that fell short of what i needed, and sometimes no care or investigations at all. I guess it is sad that there are so many people about that are hypochondriacs and suffer from munchausens etc, that doctors and the like can't tell the difference. You really just have to keep on at the 'professionals', explain you symptoms, how it is affecting your life, don't give up until you get what you need. I know this can be extremely wearing and it isn't fair. Maybe on your next visit take someone close to you, someone you live with, to back you up and explain that your symptoms are real! I really hope you get the care and support you need before too long!
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