so confused and hurting

[Guest guest]

Hi Carole,

so sorry you are having a bad time of it right now. I think we all

go through these rough times. I hope just writing to us has helped

some.

We all have to make our own tough decisions about the meds...the fact

is there are some risks involved. There are also risks in not taking

meds... My hands are terribly deformed and the docs tell me if the

biologics had been available back when I was younger I wouldn't have

the damage. Hard to say for sure.

Enbrel is such a new medicine that I don't think they really know the

exact risk long-term of developing lymphoma or other cancers.

One rheum I respect said he has hope because the biologics just block

something in our bodies and don't kill anything off.

Maybe some kind of intervention would help....you sound in pain and

discouraged.

best to you,

Marti

P.S. I wonder what is considered mild, moderate,severe...to me if

you have had to give up your career because your hand is crippled up

it doesn't sound mild.

-

[Guest guest]

<<Oh, please forgive me for such a HUGE letter and for ranting and

raving. I should probably delete this but I really want feedback.

Thank you all , in advance, and I hope I get a few responses?Carole>>

Hi Carole

The reason nobody answered is maybe because every single case of PA is

different, Some Mild, some not so mild, some even leading to total

disability! and that every single individual person is different. The only

person who can weigh up the risks is yourself. It's no good screaming out

for help from the group if you are to afraid to make the decision for

yourself. And getting on the " pity pot " is a natural conclusion to your

dilemma. Yes you are not normal!! and yes you may have to be on meds all

your life, like the thousands, no maybe millions who are on all kind of meds

for Diabetes, organ rejection, heart Disease, High blood pressure, hormone

replacement, and of course good old Auto-immunity.

The fact is that you say your PA is mild, but yet you have had to give up a

job you probably loved as a Dental Hygienist !! Now That doesn't sound mild

to me, infact I would go as far to say that it is Serious (a common thing

among us PA'ers is that we underscore our pain) Of course I could write and

be all sympathetic to your plight (and I am) but that would be no good for

you.

What you need to do is weigh up the risks and accept your decision. If you

as a person cannot accept that you may get Lymphoma from a pill your taking,

even though this is not certain!! Then don't do it, in all likelihood you

may end up in a wheelchair and you may not be as active(not certain

again)but at least you know your " EXISISTING " .

See for me that is the KEY, in this life you can either get busy " EXISTING "

or get busy LIVING "

Sounds stupid if your going to die of Cancer, but that is not how it works.

It works because we only have a certain time on this little blue planet of

ours. You have people who " EXIST " , never take risks!! happy with the status

quo, happy to consume huge amounts of fat and blame it on contentment, happy

to slob at home and live off the state, happy to stay in their nine to five

job even though they hate it!! Happy to go to Bingo every Tuesday at the

same time because this is what they have always done, Never go anywhere,

because they are too scared to get on a plane, Never ask out that guy of

their dreams because their afraid of rejection, never tell someone they

love, they love them, because this might show a weakness, I could go on but

you get the picture!!

The point is that to " live " a great life, you need to take risks, and as

hard as this is, you have to overcome it for your own sanity. " living " is

not about any of the above, " LIVING " is about getting on that plane, getting

out of that Fat Habit, Asking that guy across the office if he wants

dinner!! getting out of the rut at work and get yourself a job that you want

to do. That to me is " LIVING " and so what If I die at 42 with Lymphoma at

least I've had a great life, NO a fANTASTIC life.

I got out of that old age thing along time ago, Life is not about quantity

(living to 100, but doing bugger all) Life is about quality (getting in as

many good things as you can before you DIE! whenever that may be)

But going back to your Dilemma I'll ask you, do you want to Exist or do you

want to Live??

That is the choice you have to make. If this little Enbrel pill gets you

back to what you regard as " normal " then Is that worth having back? Or would

you rather let this PA consume you and surrender to a life of pain, But at

least your still be around (although not certain, as you may, as you say,

get run over by a truck, struck by lightning or fall down the stairs because

it was a bit dark in the hallway!!).

Of course this is all personal to me, and you may already have guessed that

if I had the choice to take Enbrel then you wouldn't be able to hold me back

if I needed it, to continue on this Journey of mine through life!! As it

happens I don't actually need to go their yet as I am doing fine on my

current Med. (Which I have to take every day and has a risk of Liver damage)

I am not trying to be harsh with you Carole as it is really hard for some

people to take risks. I'm forever nagging my Mother To do more but she's

happy, so that is her choice. I'm just trying to get the point across that

Risk is what we do everyday, whether we have PA or not, and the only person

who can weigh up that risk to themselves is yourself, we cannot do that part

for you. (I know it would be easier if I said to you take the pill as it is

not dangerous at all, but life is not like that mate)

I hope you make the right decision for yourself and that you will have no

regrets about that decision. As long as you are really happy with it and

it's consequences, whatever they may be, then that is the right choice for

you.

Micky

London

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