just venting...

Jamii,
I think people do not understand. I wish I had some way to make it all better. I wish I could make people understand.
Vent away!
Hugs,
Navy

Honey we understand and I think most of us have relatives or friends who have done that to us. (((((((((((((BIG HUGS)))))))))))

I am so sorry you are hurting jamiii. You & all the other people on this forum are my heros! And, I (one of the people) say the stupidest things when I see you hurting.

Most people (including parents & grandparents) feel so very inadequate & helpless when a loved one becomes ill & is suffering & in pain. As relatives, we would give up our lives to stop our loved ones from hurting.

My g'son is right now in the hospital, laying there in pain & agony with his CD .... 19 yrs old, wearing a "diaper" because of uncontrolable diahrrea, bleeding, 105 degree fever, low blood pressure, anemic, rash all over, etc. just started Humira... now back on antibiotics which are giving him nausea, sore mouth, itch, etc.

Just last night I said to him "I know it hurts, honey, but you have to be strong.... things WILL get better... hang in there, babe".

Believe me jamiiii, I am NOT downplaying his pain and suffering. I am NOT being condescending! It just tears me apart not being able to help him. I would gladly die a thousand deaths to spear him just one pain!

The best we, as on-lookers can do, is to be symathetic & show empathy, caring & love.... the only way we know how.... through words and gestures.

Staying positive DOES help in every aspect of life becaue it helps to reduce STRESS.  Stress for me is a trigger for Crohn's flares.

HOWEVER having said that, when you're feeling like CRAP and SOMEONE ELSE (beside yourself) tells you to "stay positive/be strong" you just want to kick them-shove them-poke them in the gut. 

I've been up and down going to the bathroom since 3am this morning.  I'm tired.  My body aches.  I've got those weird skin chills but no fever.  My lower back hurts from going to the bathroom so many times.  I stayed in bed an extra hour this morning.  But I finally started talking outloud to myself: "You can do this.  Just step out of bed.  Get moving and the day WILL get better...and if it doesn't, that's OK.  At least you gave it a try." 

But if someone ELSE had been there telling me that stuff...OMG.  I'd have been screaming for them to leave me alone!

We feel ya, jamiii!  People who DON'T have this illness just can't possibly understand the frustration and pain behind it...any more than I could understand what it would be like to not be able to walk; see; hear; have Parkinson's; cancer; etc...

So sorry! I have felt the way you do before. Others just don't get it sometimes. I do think being positive can help stress but that is easier said than done. Especially when we feel like crap and are sick a lot. I hope you get some relief soon. Maybe a kind word back to those people that you are being as positive as you can but you are very sick and positive thoughts alone won't cure you. Karen

I've had a friend say she didn't understand why I wouldn't just go ahead and have all of my intestines removed so I wouldn't have to deal with Crohn's anymore and have a better quality of life...I'd only been in a flare for a few weeks when she made this comment.

 

I know what you mean, my father was telling me that "if I was really in as much pain as I acted like, I'd be in the hospital". There have been times where people have been convinced that I must be exaggerating the pain I have, and it can get really frustrating. I hope that the pain gets better for you and you can go back to having a better quality of life. I am personally thankful in a way that I have Crohn's (that probably sounds weird. To me, having a disease this painful makes you a lot more compassionate and understanding towards other people, and even though I have been diagnosed only a few months ago, I am looking forward to doing whatever I can to help with research and finding a cure for this horrible disease.

It bothers me too. I know the last thing that hospitals need is emergency rooms clogged up with people who don't need urgent help anyway. If it is ongoing and I haven't died, there is no point in going there and taking the place of someone who could have something much more urgent wrong with them. It can really be frustrating, I had friends try to drag me to the hospital screaming and crying because I was in pain at one point, and it really drove me crazy, because when I'm in pain and need to go to the bathroom every 5 minutes, the last thing I need is to be sitting in a crowded emergency room waiting room for 8 hours waiting for my name to be called.