Thanks and an update

[Guest guest]

I've been having major computer problems - we think

that the power surge from a fallen limb on an electric

line ran in on our computer. Therefore I have not had

computer access and was unable to read all the

wonderful emails you all sent to me.

I hope to find time to personally answer each post,

but wanted to collectively thank everyone for your

support and encouragement.

I do want to say that I did decrease the prednisone

wisely, and that I have gotten off prednisone in the

past with no problems. This time was just different.

Probably because of the lung involvement I'm

experiencing...

Today I went back to the doctor as I've been

experiencing alot more chest pain and having trouble

breathing. I was afraid somehow that the medicines

were doing this, but my doctor thinks it is the

rheumatoid attacking my lungs. I had a chest x-ray

which showed some fibrosis and scarring. I also did a

pulmonary lung test and it showed that I am only able

to use 60% of my lung capacity. The blood oxygen

level test finally came out ok, but the nurse tried 6

or 7 times and couldn't get the machine to work. She

finally tested herself to see if it was the machine or

me and it worked fine on her. She made me sit on my

hands to warm them up (raynaud's was acting up) and

then the test finally worked and said the blood oxygen

is ok. When I asked the doc what we can do for this

lung involvement, he said up the prednisone. GREAT!!!

He did give me the x-ray and the pulmonary test

results to take with me when I see the rheumy next

Thursday. I hope she has some better suggestions.

Though, she is the dr that has been telling me my

chest pain is not related to the disease. HUH??? My

primary dr. seems to think she may order a cat scan of

my lungs because the x-ray is not really clear. He

mentioned another test, but I can't remember the name

now....

Has anyone else had the lung involvement like this,

and if so what is being done for you?

Please write me privately as I am still not able to

get online very often and therefore cannot read

through all the digests.

An update on my grandmother - she seems to be doing

better and is back in the nursing home. Some days she

doesn't know anyone who visits and other days she

seems to be fine except for the paralysis on the left

side. It is beginning to take a toll on my dad - he

says it hurts him to go when she doesn't recognize

him.

I talked to a lawyer this week about the SSDI and he

took my case and seemed very positive about getting it

to go through. My primary dr. told me today that

every dr/specialist recommended me for the SSDI, so

that was not the problem. Obviously it is just the

standard first denial.

Thanks again - yall are the best!

Alecia

--- Alecia Flaherty <aleciaflaherty@...> wrote:

> I have been going through a very tough time, so I

> have

> not been keeping up with list mail. I am trying to

> slowly come back here because I know I need the

> support.

>

> I have several bad things happening all at once...

> my

> grandmother who is 92 has had 2 massive strokes in

> the

> last couple of weeks - it has been touch and go,

> minute by minute and the doctors cannot believe she

> is

> still alive. There have been several times when

> they

> could not even get a pulse and her breathing has

> been

> almost nothing, and yet she is hanging on (no life

> support). In the same time I got my SSDI denial and

> my insurance has decided to pull completely out of

> the

> state - leaving me high and dry. Have contacted

> several insurance companies and heard the same thing

> from them all - automatic denial because of the RA,

> UCTD. So, I've been in a major depression. To top

> things off, I finally managed to get off the

> prednisone and within 3 days of completely stopping

> it, I thought I was going to die. I was in major

> pain

> even though taking oxycontin every 12 hrs. and did

> not/could not get out of the bed. The lovely malar

> rash was back with a vengence and I was not able to

> eat

> anything - I can't figure that one out as I have not

> been having any stomach problems. Considering all,

> I

> decided I don't care if the prednisone kills me

> because my quality of life without it is nothing, so

> I

> added it back to my daily meds this weekend and I'm

> slowly starting to feel alive again.

>

> I have no idea what has been going on with everyone,

> as I have deleted all list mail for weeks. I hope

> things are better for you all.

>

> Alecia

__________________________________________________

[Guest guest]

Hi Louise,

Yes GP`s are good, they were going with endo at first I thought but

they didn`t tell me how much thet had been emailing her.

I think the fact that she p***** them off so much worked in my favour

as well :-)Hope you get some good luck too

Tess

>

> Pity you had to get so ill before they took notice but it does sound as if

things are looking up for you now :0)Your GP appears to be on the ball, I wish

mine was as sharp/fearless as that :0(

>

> Louise.

>

[Guest guest]

Hi Bob,

I don`t know if I`m gluten sensitive but I have wondered about that

as I have terrible bloating, is there a test for this? A lot of the bloating is

water though, pitting I think its called as it leaves a dent?

The vitamin D thing very interesting though..I used to get vitamin D

injections twice a year as I also Crohns disease (touch wood not been

active for a few yrs, diverticular disease took over lol)I `m sure

it was to help with food absorbtion as diahorrea was my thing then,

lol me n my bowels!!

I`ve looked through test results I have here and vit D not been tested,I`ll

definately look into that, I had forgot all about getting

those injections.

I don`t know about having a decent conversation with GP lol mine all

seem to revolve around sh** or lack off as the case may be.

Thanks a lot for letting me know about that, this site has been such a God send,

you all have so much knowledge and it makes thyroid disease a bit easier to bear

knowing we`re not alone.

Tess

>

> Hi Tess,

>

> Thank you for the graphic clues that also help others to differentiate what's

going on....

>

> Perhaps I'll be able to go back and have a sensible discussion one of these

days with one of my GPs...don't know which one.......the one with the long

waiting list or the one with the short one....;-)

>

> Are you also gluten sensitive??

>

> The other factor may be your vitamin D3 level....did anyone ever test it or

ask about it?

>

>

[Guest guest]

What dose B1 would you recommend we take Bob. I take diuretics

and suffer the occasional bloating tummy.

Luv - Sheila

message #50256 was from angel.

have you any thiamine (Vit B1) in the house?

I'm becoming suspicious that many on this forum may be short of vit B1 ~

adding to/causing the bloating as the body tries to hang onto sodium,

then reducing the serum vit B1 level (known as wet beriberi).

Dawn (and others) seem to be suffering that same problem at the moment.

Do you take any vit B supplements?

best wishes

Bob

>

> Hi Bob,

>

> I don`t know if I`m gluten sensitive but I have wondered about that

> as I have terrible bloating, is there a test for this? A lot of the

bloating is water though, pitting I think its called as it leaves a

dent?

>

No virus

found in this incoming message.

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18:44:00

[Guest guest]

This I need to try. Thanks Bob

Luv - Sheila

Hi Sheila

It may need 10 - 50mg thiamine for a few days to re-eatablish some sort of

realistic level....

then reduce as needed.

Bob

> >

> > Hi Bob,

> >

> > I don`t know if I`m gluten sensitive but I have wondered about that

> > as I have terrible bloating, is there a test for this? A lot of the

> bloating is water though, pitting I think its called as it leaves a

> dent?

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.423 / Virus Database: 270.14.25/2450 - Release Date: 10/22/09

> 18:44:00

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.423 / Virus Database: 270.14.25/2450 - Release Date: 10/22/09

18:44:00

[Guest guest]

Thanks Tess :0)

Louise.

> >

> > Pity you had to get so ill before they took notice but it does sound as if

things are looking up for you now :0)Your GP appears to be on the ball, I wish

mine was as sharp/fearless as that :0(

> >

> > Louise.

> >

>

[Guest guest]

Thanks again to everyone for advice, I`ve been away at my daughters

for the last few days.

I`m still not sure what I`m going to do yet but will try see GP to

go over it all again.

Bob I`ll go to shops tomorrow and get that Thiamine to give it

a try.

Just to confuse me even more I am actually feeling the best I

have felt in a year these last few days.

I got some vitaminD with Calcium from Asda but (sorry bout this folks)they are

coming out the other end same way?? Has anyone tried

these ones/had this prob, I don`t know whether I`d be best getting

the vit D on its own.?

>

> This I need to try. Thanks Bob

>

> Luv - Sheila

[Edit Abbrev Mod]

[Guest guest]

Hi Sheila

If you suddenly start loosing lots of 'water', make sure you don't run out of

salt too.

'Rehydrate' when necessary, with a bit of salt and magnesium and that may need a

touch of potassium (bananas?)

Bob

>

> This I need to try. Thanks Bob

>

> Luv - Sheila