Re:Caro/ Hello

[Guest guest]

Caro,

I'm sorry to hear of the losses to your family.

Well, let's see...is " not any better " the same as stable? If so, yay! I think

you are so right

never say never! And better quality of life is better, way better! I have had

some

treatments that might have made me " better " in my doc's eyes but decreased my

quality

of life so much that I quit. Your doc may be good but sounds like maybe he

could have a

little better bedside manner. Walking a mile a day?!!! Good for you and don't

be

discouraged about your total gym, you are way too hard on yourself. Try 5

minutes. It

sounds to me like you are doing everything right. Dropping down your pred will

help with

the weight and you are absolutely right, 3 lbs is not bad!! I tell the techs in

the lab that I'm

there for my monthly bloodletting. Sounds to me like you are doing GREAT! Hope

you are

enjoying the weekend. Extra hugs for you, Caro

Kathie WA

nsip '96.etc

>

> Good morning all!! I have had a heck of a week!! My uncle died on

> Monday. He was in his 80s and had suffered from a long illness. Was

> still a blow to deal with, as we just buried my Grandpa who was 93 a

> month ago.

>

> Yesterday, I went to pulmo doc. He said the medicine is not making

> me any better. Then he said he wants me to go to pulmonary rehab to

> learn a " better quality of life, even though I will never get

> better. " (His exact words.) Well, I am thinking, never say NEVER!!

> Needless to say, I was really depressed when I left there. He wants

> me to try Mucomyst. He said I can get it over the counter. My

> appointment in Birmingham is in 6 weeks and I have to go back and see

> pulmo in 8 weeks. He also said when I come back, he wants me to taper

> down the prednisone to 20 mg a day instead of 30 mg on June 1. They

> drew blood yesterday and I got a B12 injection. I have gotten where

> whenever I go in, I just stick my arm out and turn my head. LOL!! He

> did tell me that I was doing good with my walking up to a mile a day

> and to keep at it if I can. I am really trying here. My Total Gym

> got here on Monday and I used in Tuesday for 15 minutes and was

> coughing so bad I thought I was gonna die!! Guess I will have to

> take it slower. I would hate to think I bought the thing for

> nothing!! Also, I had gained another pound yesterday. That makes 3

> pounds since I started the prednisone, which is not a lot, but on a

> 4'11 " body, 135 pounds is a lot!!

>

> Well, thanks all for letting me vent this morning!! You are the only

> people who actually understand when I don't feel good!! Sometimes I

> feel like I am just a complainer and I don't mean to be. It's just

> that my family members really don't understand how bad I feel because

> they haven't been there. They do try, don't get me wrong, but it's

> just not the same as talking with people who actually KNOW how you

> feel. Does that make sense?

>

> I hope you all have a wonderful day. It is sunny out here and I

> think I am going to get out and walk a little extra today. Maybe the

> fresh air will do me good.

>

> Caro

>

[Guest guest]

Caro,

Do you take multivitimans with iron in them? That is sometimes the culprit.

No, not a good subject! I just started taking Ferrous Sulfate 325mg 3X Day and am looking forward to some interesting adventures or should I say non adventures. I have been eating applesauce....someone told me that was a good thing.

None of the meds you named should be causing it....but with irritable bowel, it could be anything. I hope all systems are go....really soon.

I agree this is not a good subject, but part of life. My dignity went out the window a long time ago.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16