bit of a shocker - doctor's appointment

[Raglet]

well I went to see my trusty gp today, who faxed my rheumie. Basically this is just about starting another paper trail, building up the case again (post massive balance loss over the weekend) working towards another lot of rituxan. I am not expecting anything to happen anytime soon, which of course means that the permanent damage will keep piling up.

Anyway, while I was there I said 'at this rate I think I that in a one years time I won't be able to walk at all', and he agreed.

he AGREED !

he wasn't meant to - not that I would have believed him if he hadn't, I know this is true, but doctors are not meant to just sit there and agree that something like that is going to happen to me - to someone else, yeah sure, but not to me.

it's that ME factor that is meant to keep all those yckkie things away, but somehow is letting me down right now. I am sure he got that wrong, maybe he got the wrong person in from the waiting room, maybe he was thinking of something else ..... maybe you?

I don't like this, I don't want to play anymore !!!!

on a more pragmatic note, my wheelchair has one bald tyre. This is a new experience for me, and I keep doing unintentional wheelies. They keep laughing at me at work, and i keep giving them the fingers in a convivial way, it is a very cheerful workplace (truely, they are good friends, and allowed to laugh).

me, again, sorry for the endless posts, i just keep thinking of new things to say ............

raglet

[Clare.T]

(((((((((((((((((((((( Raglet ))))))))))))))))))

Deleted expletives and some tears for you. Yes I know you wouldn't want that but that's how I feel.

I think you should print out your posts and publish them with an explanatory commentary where necessary. Maybe a weekly newspaper column.
Lots of love and hugs

Clare

[Joandublin]

(((((((Raglet))))))) :sad:

What a shocker alright:sad:

Of course doctors are not meant to agree with you when you test the waters and just 'put out there' your worst fears......:sad:

Some fears are just too hard to comprehend -voicing them is hard enough but having them mirrored back to you must have been just awful. And yes, these things are meant to happen to someone else. I agree.

I dont have any other words right now but loads of hugs

Love
Joan

[A1marva]

Raglet me so sorry about your Wheelchair And I just hate it when my DR. agrees with me also. Raglet, may I say that I am very sorry that your GP agreed with you.I wish that I could have stopped that. But nobody's LOVED as much as you Raglet!!!!!!!!!:) Raglet I don't think Clare was kidding. And I agree it is a good--no GREAT idea.

Please keep on thinking of thinking of things to tell us Raglet.We enjoy it.

Love Ya,
Marva

[wifajax]

(((((Raglet)))))

I hate this for you, too. Sometimes you wish your doctors would just pretend things are NOT sliding downhill and picking up speed. I'm all for honesty in that relationship, but sometimes we need a break from the truth.

Raglet, you are an amazing person, and inspire many of us with your continuing cheerfulness and bravery. Yes, bravery. I imagine you will face whatever comes this time as you always have - by refusing to let it take over your life.

Continue popping wheelies in your wheelchair. It just means you are moving at warp speed.

Terri

[peonyprincess]

Raglet.

As a nurse, I know what certain indications are or may lead to when a patient would prsent with them. Now, I worked in the hospital, so my patients were already quite ill, but sometimes they were not ready, prepared, or were clueless that something else as amiss. Example being:

********one gentleman was in a bad car wreck that almost took his life, once in the ICU and stabilzed, we had to speak to the family not only about his injuries and what we were watching for, etc, BUT also that we found the man had cancer and that without treatment he would not live. Now add in that at that time, he was to unstable to have the treatment. The family waited, the man somehow improved quickly (miracles never cease to amaze me), fought the cancer and is now back out in the community. That was 4 years ago.***************

I tell you this for several reasons. 1) While we might know what is going on, we are never really willing to except our fate. Some of us fight tooth and nail. Just because a doctor says it might be so, doesn't mean that is how things really are. It seems we lupies are rather stubborn and we don't give up. 2) Doctors do not know everything. They are PRACTICING medicine. Even with practice, they like any other professional that practices, THEY make MISTAKES. Fight like you have never fought before. Now we also know that unfortunately some doctors are exactly correct and he has been cursed to know our fate. Still, do go down without a fight. One of the biggest fighters of an illness.....HUMOR and that you have been blessed with.

Please take care of you and fight like ****. Also,next time you see your doc, accidently run over his toe with your chair and then innocently look at him with wide eyes and say "Oops:ouch: my bad."

Nancy

[sam101360]

(((((Raglet))))

All I can offer is my love, prayers and anger...on your behalf.

I love you hun!

Stephanie

[neongirl]

((((((((((((((Raglet)))))))))) I'm sorry the doc was so blunt. I agree with Nnacy, Drs. don't know/control everything, leave room for hope and the miraculous:)

[confused1]

((((((((((( Raglet )))))))))))))))

Prayers, hugs, hope and laughter. It's all I can think to offer. I'm so very sorry, but that won't help in the least. Dear girly, if love was a cure, you'd be the healthiest person on the planet!

Sunny

[Raglet]

for agreeing with me, in fact I would have been angry with him if he DIDN'T agree with me, as I know this to be true, or very likely if that is a better way of saying it.

It's more that I dont want this to be true. My doc is a trooper, he has fought many battles for me, he's just great. I am very lucky with my doctors.

I am just ranting about what the universe is handing out at the moment - it's that sort of 'he shouldn't have said that' coz it shouldn't be true.

of course, nobody can entirely predict the future, but I also know that i have to prepare myself for this and if it doesn't happen, well I will be throwing one heck of a party

thanks guys

raglet

[LolaLola]

Dear Raglet,

Just wanted to say how impressed I am that you still go to work!! Well Done!!
Hugs, x Lola

[zara]

http://www.abcwebworx.com/smilies/emotions/emotions103.gif ...this represents those moments when reality hits you like a ton of bricks.

[Douglas]

Dear Raglet,
I was told that within two years I would be in a wheelchair for the rest of my life. I was told that in 1976 and still no wheels, just a cane part-time. I did extensive research 'way back then and I can assure you that today's chairs are kighter, better and (in electric form) more powerful and comfortable than even the very expensive good ones three decades ago.
It is better not to need a chair but it is good to knwo that one can still have a good life even if stuck in one. Mind you, as I said back then, I would prefer my chari to have tail-fins and a V-8.:)
Blessings.
Douglas+

[raggedyann1]

Raglet,

That is a curve you just don't want to happen and I don't blame you. I was muttering about my doctor under my breath yesterday in the opposite case. I know he was trying to give me hope and many things have improved but I think his statement is unrealistic.

How do we find the magic place where there is just enough hope and just enough reality to not throw us for a loop. I can't imagine what you are going through.

I like the idea of a newspaper column. You are funny enough to make a point. Who knows it might even get you approved for another round of Rituxan sooner. Or a flight to the USA for one of the newer treatments that is in testing. Or ..............

I was picturing wheelies in an electric wheelchair. I am glad you can make jokes with your co-workers.

Hang in there,
Karen

[Soundy]

I am never angry when my PCP tells me like it is ... not that I
always want to hear it but I like the truth...

he didn't call me when the first MRI revealed my brain tumor
and his nurse told me they were sending me to a specialist
because it appeared that I had some deformity in my
sinuses...

when the ENT guy I first saw walked in and said "so you
have a tumor ,we need to see how bad " ..I almost fell over
from shock induced heart attack

Now he tells it exactly like it is ... I told him he was not only
my doctor but my friend and I expected more from him... he
said that is why he didn't call me and had the nurse do it ...
He has been behind me through so much from birth of my kids
to the tumor and now lupus...we have share laughs and
tears ...

I may not want to hear what he has to say or have him
totally agree with my worst fears but I like the truth...

[acard]

They say,"laughter is the best medicine" well Raglet you certainly share a lot of great medicine.:Pixiedust:

Thank You,
Becca

[Raglet]

again, I am not actually angry with the doc, never was, and i do appreciate honesty. I was just railing at the universe, a bit like Lear on the heath ....... sometimes i just have to let it all out

cheers, and thank you all

raglet