Re: Marti

[Guest guest]

Hi Marti,

I haven't met you yet, but I've heard a lot about you. I'm glad you're done

with your chemo.....

I'm so sorry your daughter won't share her home with you. I really don't

understand that. It would be amazing for her children to have that extra bound

with their grandmother! A few years ago, my own grandmother needed somewhere to

stay because she could not care for herself. There were many in my family who

had the room, money, and time to care for her, but they all wanted to shove her

away in a nursing home. I had just had double knee surgeries, had 2 yr old

twins, and fibro but I moved her in with us. I will always be grateful that my

twins had the chance to really bond with her. It will be something they will

always remember also.

Your son sounds like a great guy! Didn't you say he was seeing someone? Maybe

they will marry soon and you will have new grandbabies running around you. I'm

sure everything will work out for the best.

Jill

Re: quality of life

Hi Ann,

I am so sorry you are having such a hard time. I hope you can get something

for your pain soon. I know some suggest pain management specialists. I haven't

been to one, but would give it a try if I had to. My PCP is understanding so I

haven't needed to. Also my oncologist. I do have two doctors who don't believe

in Fibromyalgia. To me that's like saying they don't believe in rain. It is

right there staring them in the face. They just choose not to deal with it or

their stupid.

What has happened with you liver? If you were in stage 4 in 1999, have you had

a transplant or are you just hanging on. I thought stage 4 was the final one for

cirrhosis. I hope you are doing alright with that now. I can understand the

doctors not wanting to do something that will affect your liver adversely, but

surely there is something that is metabolized another way. I hope they find it

for you.

Hang in there,

Marti

Ann McCracken anj3330@...> wrote:

To my dear friends,

I have boggled my mind on how to write this, but after thinking so hard, I

have come up with a conclusion, just write it in the truth of how I feel, so

here goes:

Since I have been dx in 1999 stage 4 pbc stage 2 aih, my thoughts have always

been on the quantity of life I will have and not the quality of my life. Well, I

have now come to know that my quality of life is of more importance, because

without a good quality of life my quantity of life will be shortened. I have

been dx with fibromyalgia, been in pain for years and the fatigue is at its

utmost, but not knowing why until recently.

I have been to my pcp, rheumy doctor, gastro doctor, and none of them will

listen to the pain I am in and are so afraid of giving me a rx that will work,

and some want to pass the buck on to one of the other doctors regarding pain

meds, due to them thinking that it is going to destroy my liver even more, well

guess what, I can honestly say I don't care. I am so tired of sitting around

crying because of the intense pain.

I have spoken to many of you about pain medication and know your feelings

regarding this, I know it is not great for the liver. I have been reading in the

digest about positive mental attitude and believe me I know the importance of

that, but, being in constant pain and fatigue can do nothing but lower that

positive attitude. In my opinion once you can get the pain under control the

positive attitude will rise up again, and maybe the fatigue will lessen, since

pain can take a lot out of you.

I have thought of this for years, the only way the doctors can truly

understand what you are going through is for them to have what you have, and go

through the pain and fatigue you are going through. So I guess I have to go

through many doctors until I have found the one who will listen to me, since I

am the only one who knows my body best. I also understand that doctors are

apprenhensive about narcotics because so many people abuse them, but, having a

person who has a legatimate reason to be on them, they need to seriously rethink

this.

I hope this all has made some sort of cense to you all. Thank you for always

being there even if we do not always agree on things.

Sincerely,

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