Page 1 of 1

More from Teddi in the frozen midwest

PostPosted: Mon Dec 25, 2006 7:36 am
by teddiv
Several people have told me about a tv program here about a woman with my same problem (massive localized lymphedema) but I have not seen it myself. It seems that they successfully removed the growth and her prognosis is excellent. It seems that the trick is finding a doctor who will consider undertaking the procedure. I have been searching and approaching doctors for about a year now with no success. While I was in the hospital, I begged for a surgical consult but they refused.

I was in Mercy for four days in the beginning when I first had the onset of the cellulitis, which is a bane to my existence and which I've had twice this year. Both times it almost killed me! I guess I have a strong constitution or else I'm just too stubborn to let it get me which is why I'm still here.

They sent me up to the Mayo for tests and trust me, I never want to do that again. They are so big that it is very impersonal, you are just a number to them. They schedule procedures around the clock and if they get behind, the patient just has to wait. They are not particularly concerned about your comfort, just your overall state of health at the moment. They did a cat scan, among other things and it was just horrible. They said that they would knock me out for the procedure but they did not. They gave me something that acted like a bad psychedelic trip which was terrible.

I have gained so much weight between the lymph fluids packed on my body and the lump which weighs easily 70 to 80 pounds, that I am considered morbidly obese - this causes most doctors to simply write me off. After the Mayo, they sent me back to Mercy with the diagnosis of cellulitis and they sent me to their west wing where I had 35 days of intravenous antibiotics. They did not want to give me physical therapy because I was so big and therefore I lost the ability to get up and walk. I finally found an advocate in the staff ethicist who helped me gain a limited amount of pt. When they finally sent me home last Friday, I could stand but not walk, they left the catheter in but removed the pik line to my heart, thank goodness. After only two days of working on it, Michael and I have gotten me to the point where I can take a few steps and pivot to get from the bed to the wheelchair or from the chair to the commode etc. I know that if I had had a full spectrum of pt up there that I would be walking fine by now.

And miracle of miracles, I did lose 114 pounds of fluid while I was there. They can't explain why and I was not on any special diet. I just hope that I can continue but without knowing why, it's difficult. I think I will try to strenuously diet this year and hope that perhaps some more of the fluid will find its way out of my body.

Happy holidays and wishes for a better 2007 to us all.


PostPosted: Mon Dec 25, 2006 8:38 am
by silkie
Hi Teddi
114 pounds ik Girl with the little ammount of treatment you got finally with your lymph look what you achieved and since being home even more progress. Don't stop now keep doing what your doing it seems to be moving the fluid

High protien little often seems to work with me you have to find your own balance the biggest thing Teddi is dont waver don't give up on yourself this
weight and fluid takes time and you have to be patient and determined no matter how tired or how depressed do it do it every day don't fail yourself

thats for others to do you NEVER give in

You have seen what can be acheived now your 114 pounds lighter
even at 2 pounds a week this time next year you will be 228 pounds lighter you can do a couple of steps next week might be three or four keep at it
Happy Christmas Terri you have started treat yourself to some TLC




PostPosted: Mon Dec 25, 2006 9:47 am
by teddiv
You are the best. I only wish you were closer so you could encourage me not to get depressed on my worst days... and I would do the same for you although yu seem so centered, I don't think you ever get really down!


PostPosted: Mon Dec 25, 2006 10:36 am
by silkie
Hi Terri

I have my bad times to were all human and sometimes u just have to shead a tear or two i think its a self cleansing. If you don't let it out it a bit like lymph in stays in your body and festers causes infections that sometimes are harder to shake than the lymph. Depression.

Don't let it fester let it out. When i fostered some of the children with great big emotional problems we would take to a special room. it was huge there were punch bags and dolls they could pull apart they were anger rooms I think we all need to get it out like those children did them so much good.

Terri im an e mail away anytime you want to vent
and ill relemberwhere you are to when i feel the need to have a good old rant and rave about this lymph ok lol

We have just finished Christmas dinner ohhhhhhh was i a naughty girl
the diet went out the window the mince pies christmas pudding and trifle went in.

I am fit to burst, but oh it was SO GOOD being so wicked

Tomorrow im back on the diet today its Christmas and i have self indulged my taste buds

I got to say it I do do the Christmas trimmings to perfection,. lol noiw i gona have to sleep ohhhhhhhhh i have been soo naughty and it was delicious



PostPosted: Mon Dec 25, 2006 1:08 pm
by teddiv
You are making my tongue water with talk of Christmas pudding and trifle!!!

We haven't done anything this year as Michael is doing the cooking plus we have no family to speak of and not the least is that we are so poor right now, we have to wonder how we will keep the heat on. He takes good care of me but he gets overwhelmed and then he gets depressed - no way will he let it out ... he just sleeps a lot. And the upshot is that our food stamps lapsed while I was in the hospital as he was not even opening mail. If he had, he'd have only had to sign the new extension and send it back. Now, we have to make a whole new application and then wait to see if they approve it. Iowa is very low on the list of which states have the most liberal social programs.