i lose weight too.
don't know about alternate ways to get calories.
for me , the weight thing is, of course loss of appetite during a flare but also(i think because i'm so totally fullbody clenched against the pain).when i force myself to eat chewfood.i get sick for a couple hours.
been livin mostly on yogurt for awhile here.
well and of course.....ice cream.
wish i could be of some help to ya buddy.
t

jc, I know there are drinks formulated for weight gain that you can buy. But you still need to go to the doc to find out why. My weight has fluctuated so much and rapidly at times with CP that I have a fatty liver.

have you checked your blood vsugar? sometimes diabetes makes people loseb wait.

Eeyow, no kidding on the yogurt and ice cream-possible to eat when other things aren't.

Sis, yea, they're working on why.
t:-) hat,s another reason I'm anxuios about this app.-
Docs goin' to flip when he here's I haven had lymph node biopsy yet.h

As I said, he's the immunologist referring me to gastroentrologist.
P.m. doc want:-) s me to se rheumetologist

Gp doc and family want me to go to John Hopkins........???

Can you feel the pa if building here?

I do not want to be in hospital.
Okay, I'm done.
Breathing in breathing out repeating S nec.- see, I don't just say it to others.....haha....jc

That was supposed to say panic

jc, i'm going to yell at you now:

GO FOR THE BIOPSY ASAP!!!!!!!!!!!

LISTEN TO YOU DOC AND FAMILY!!!!!!!!

You and I are going to be proactive about our illnesses from now on. It could make the world of difference for us and our families. START TAKING CONTROL!!! We are not completely defenseless aginst this.

Have you ever used visual imagery? While you're breathing in and breathing out picture a color that makes you feel calm and a color that makes you feel panicky. Then Breathe in the color that calms you and breathe out the color that makes you feel panicky.

Sis, I promise you, I'm being pro active. The biopsy just fell between the cracks
Have had two other cancer ruled out this month.

The staying out of hospital is imperative to me right now.
I have to be where I can see my family, and my kids need me to be where they can see me.
John Hopkins they want me to go to is in the east coast.
(My kids are adults-that's a whole other story)

Also, I have a mi I yorkie who trusts no one but me. He was what they call a ghost dog when I got him, seven months and not socialized and he needs thyroid meds twice daily he won't take from any one else.
He's always traveled with me in past, but obviously he can go in hospital with me..............

Sis, what color freaks you out?

sis i like that last one(plus the yellin one too, i wanna yell toooo, just kiddin)
jc- i use self hypnosis.
i have some really excellent cd's on it from this dr. who specializez in pain management.
don't really know the ROR (and don't wanna look it up) on spoutin off people and their products on here.
i will email you the info.
REALLY helps my state of mind.
........i'll go do that now:)
PEACEbuddy..................t

there done BAM!
I...........AM...............the...............WIND!
ohyeah.

This is a hard one!
I eat Ice Cream when I feel like nothing else.

There are two reasons. Stop readin ghere if you get grossed out easily. You have been warned.

Ice Cream is easier to throw up if the pain grows to the point of that.
Ice Cream is filled with calories an dfluids. Meeting two needs at one time meaning I have to put less in my mouth.

I would turn down a feeding tube also. They just have to realize that pain will kill and do something to help everyone who is in pain.

I will pray for you.
My Jack would be lost without me so I understand that too. He chews his meds for me if I put them on the ground. Others have to shove them down his throat.

the color that upsets me most is black even though i like black clothes. that is color of my death pain.

SunnyBunnyHunny, I just love that! I often coordinate things I do to save my energy, but I never thought of it in terms of food. Sounds like a good idea but I don't know about throwing up ice cream. It could be kind of thick ya know.

jc do you eat? I don't understand why you are thinking of a feeding tube. isn't that for people who refuse to eat or can't eat?

I have difficulty eat in. Swallowing and upper stomach.
Now, I just don't seem to be able to eat enough calories to maintain,
or even stop losing.
I didn't say I was getting a feeding tube, I jut wondered if anyone knew of another means of caloeie intake.
My dh has spoken with this immunologist- he's the one who ordered the subcutaneuos shots for nasea- but he hasn't phisically seen me in over a year. He's going to be shocked at how bad I look.
This is one of my best docs ever. The Las time I saw him, he literally had tears in his eyes when he told me he guessed he was going to have to go along with dx of neuralgia due to recurrent shingles,
Because he knew that was wrong, but couldn't find dx.
And of course much has occurred in the last year that doesn't fit thatdx.
God, this is long. One eye and two fingers

Soooo, Las time dh spoke with him, he said this time he won't quit 'til he gets it and is referring me to gastro as well.

This is why I don't get into my Med condition much, it is a loooooong
Boring story.

Bottom line is I look like I'm dying, and just hope he doesn't ju p on the John Hopkins train.
I'm done this took forever.
Hugs......jc

I'm really sorry you are feeling so bad jc and all the troubles you are having. I think you are doing what you said I was doing...asking someone to tell you the future because if the doctors don't know how will anyone here know? I have an issue with the flap on the end of my esophagus. it does not always open and the food cannot go down. I throw up instead and can't eat. I also have probs swallowing but I believe it is due to one of the possible diseases I may have. I remember reading it in the symptoms list. I guess what I'm trying to say is that you can't always think the worst. It could be something that you never heard of and that may be fixable. Why are you down to one eye?

JC Has anyone checked you out for the chronic illness called Polymyositis, its an autoimmune disease that effects the muscles. definately take your doctors advice and go and see a Rhumetologist and get that muscle biopsy done. You need to get better so you can be there for your family and pets. I had a nasal feeding tube in hospital, all my muscles had weakened and I couldnt swallow properly. Before I got to hospital i was also having nausea problems and throwing up every morning.