Re: Christmas card list & a bit of personal sharing

[Guest guest]

Could you add my info please?Too sick to write more!Sorry,love Elly

________________________________

To: Stillsdisease

Sent: Fri, November 26, 2010 5:22:52 PM

Subject: Christmas card list & a bit of personal sharing

 

Hi all,

Some have replied to the card list but I wanted to let our members in other

countries that it’s ok too to add their names to the list. We have had some in

the past and it’s alright. It’s not too expensive to add a stamp to another

country and we don’t want our/any members to be left out.

I hope that our members that celebrate the holiday weekend had a good day

yesterday and it wasn’t too hard on their illnesses. Me and mine had a very

relaxing day without expectations and I rested in this morning even though we

had planned to join some things in town. I figure there will always be tomorrow.

Well, good day to everyone and keep sending in those requests please,

Lots of well wishes,

[Guest guest]

Dearest El,

I will be happy to add you to the card list. I didn’t get a new home number

honey. It’s still the same, just a new cell number, but I’ve been home just

not today. I know your birthdays coming up ;0) I’m sorry you’re still so

sick my friend. I’ll call you, well maybe you call me when it’s best for

you, but I’ll write my cell number later when I get it out. I just got up for

a little while. I hate night sweats! lol. Talk soon, lots of love, Mel

From: elly cudney

Sent: Saturday, November 27, 2010 3:06 AM

To: Stillsdisease

Subject: Re: Christmas card list & a bit of personal sharing

Could you add my info please?Too sick to write more!Sorry,love Elly

________________________________

From: windsinging <mailto:windsinging%40hotmail.com>

To: mailto:Stillsdisease%40yahoogroups.com

Sent: Fri, November 26, 2010 5:22:52 PM

Subject: Christmas card list & a bit of personal sharing

Hi all,

Some have replied to the card list but I wanted to let our members in other

countries that it’s ok too to add their names to the list. We have had some in

the past and it’s alright. It’s not too expensive to add a stamp to another

country and we don’t want our/any members to be left out.

I hope that our members that celebrate the holiday weekend had a good day

yesterday and it wasn’t too hard on their illnesses. Me and mine had a very

relaxing day without expectations and I rested in this morning even though we

had planned to join some things in town. I figure there will always be tomorrow.

Well, good day to everyone and keep sending in those requests please,

Lots of well wishes,

[Guest guest]

OOPs everyone, thought this was private. Sorry,

From: windsinging

Sent: Sunday, November 28, 2010 2:56 AM

To: Stillsdisease

Subject: Re: Christmas card list & a bit of personal sharing

Dearest El,

I will be happy to add you to the card list. Mel

From: elly cudney

Subject: Re: Christmas card list & a bit of personal sharing

Could you add my info please?Too sick to write more!Sorry,love Elly

[Guest guest]

,

I have a new address for me to be on the list. It is, Angelia , 185 Sparks

Lane, ville, AR 72802. It has been a while since I have been on. Let me

know if the full list will be sent out only to those participating or how it

will work. I want to be sure I have it so I can send them out. Thanks a bunch

!

Angelia

Vice President

Aloette of Central Arkansas

www.myaloette.biz/angelia

Subject: Christmas card list & a bit of personal sharing

To: Stillsdisease

Date: Friday, November 26, 2010, 4:22 PM

 

Hi all,

Some have replied to the card list but I wanted to let our members in other

countries that it’s ok too to add their names to the list. We have had some in

the past and it’s alright. It’s not too expensive to add a stamp to another

country and we don’t want our/any members to be left out.

I hope that our members that celebrate the holiday weekend had a good day

yesterday and it wasn’t too hard on their illnesses. Me and mine had a very

relaxing day without expectations and I rested in this morning even though we

had planned to join some things in town. I figure there will always be tomorrow.

Well, good day to everyone and keep sending in those requests please,

Lots of well wishes,

[Guest guest]

Hi Angelia,

It’s so good to hear from you again! I will update your address with pleasure

and it will just be going to those that give them to me because we always want

to preserve those that want to keep their privacy. It’s over an 800 group of

members after all, lol. I’ve always been mindful of this information and very

protective of it within the foundation records.

I do hope you’re doing alright these days? Please take care and have a rested

season.

Best regards,

From: Angelia

Sent: Sunday, November 28, 2010 7:31 PM

To: Stillsdisease

Subject: Re: Christmas card list & a bit of personal sharing

,

I have a new address for me to be on the list. It is, Angelia , 185 Sparks

Lane, ville, AR 72802. It has been a while since I have been on. Let me

know if the full list will be sent out only to those participating or how it

will work. I want to be sure I have it so I can send them out. Thanks a bunch

!

Angelia

Vice President

Aloette of Central Arkansas

www.myaloette.biz/angelia

From: windsinging <mailto:windsinging%40hotmail.com>

Subject: Christmas card list & a bit of personal sharing

To: mailto:Stillsdisease%40yahoogroups.com

Date: Friday, November 26, 2010, 4:22 PM

Hi all,

Some have replied to the card list but I wanted to let our members in other

countries that it’s ok too to add their names to the list. We have had some in

the past and it’s alright. It’s not too expensive to add a stamp to another

country and we don’t want our/any members to be left out.

I hope that our members that celebrate the holiday weekend had a good day

yesterday and it wasn’t too hard on their illnesses. Me and mine had a very

relaxing day without expectations and I rested in this morning even though we

had planned to join some things in town. I figure there will always be tomorrow.

Well, good day to everyone and keep sending in those requests please,

Lots of well wishes,

[Guest guest]

I’m sorry all,

I thought that came just to me. I guess Angelia’s address isn’t private?

Sorry I didn’t trim,

From: windsinging

Subject: Re: Christmas card list & a bit of personal sharing

Hi Angelia,

It’s so good to hear from you again!

[Guest guest]

Hi , I would like to be added to the Christmas card list too. I have a new

address since last year, should I just post it here...or is there another place

to send it? Sorry you're getting those darned ole night sweats again...are you

in a flare? Sure hope not...you've had enough going on this year.

Some good news to report on me...I've been on the Actemra now, since July....the

first few infusions didn't seem to do much good, so they doubled the doseage and

it has helped tremendously. I'm now down to 17 mg of pred...from 35 (since

January). This is the first time in 4 years I've been under 20 mg...and I'm

feeling pretty darn good. I'm so hopeful this is the magic bullet for me. Ask

your doctors to try it out. The side effects are supposed to be less toxic than

some of the other biologics they try on us.

Hope everyone had a good turkey day! talk to you soon.

----- Original Message -----

[Guest guest]

,

We are so very happy for you! It’s so hard for some to get off the steroids.

I’m really excited for you and I’m sure others are as well. I think I am

starting to flare after many years of remission, but hopefully I am on a bit of

an uptrend and the better times will fend it from getting worse XX fingers ;0)

You may send your address to me at my old address at mellymelt@...

because I have just merged the accounts so the old one is still a valid address.

No one has to change the files for me. If anyone wants to have their addresses

out to the group of course they can post it here but if they prefer to have it

just on the Christmas card list, just send it to me directly and it will just go

to those that register for that.

It’s really nice to hear from some that have been absent for a while. Please

post when you can. We love to hear your news.

Smiles,

From: Bouldin

Subject: Re: Christmas card list & a bit of personal sharing

I have a new address since last year, should I just post it here...or is there

another place to send it?Some good news to report on me...I've been on the

Actemra now, since July....the first few infusions didn't seem to do much good,

so they doubled the doseage and it has helped tremendously. I'm now down to 17

mg of pred...from 35 (since January). This is the first time in 4 years I've

been under 20 mg...and I'm feeling pretty darn good. The side effects are

supposed to be less toxic than some of the other biologics they try on us.

[Guest guest]

 I am so sorry... I didn't even trim the previous email. I guess maybe I'm

confused .... so forgive my ignorance on this but is there a list of everyone

that is participating that we can get instead of individually?

 

I have not been able to be on here and post like I should have. I have read many

of the posts. I also should have posted something to let others know what is

going on. That was very selfish of me when all of you are so caring and give so

many kind words thoughts and prayers. Just to say.... I always appreciate those.

I think the last post from me was the one stating that I was going to go ahead

and file for disability. I have done that and are through the paperwork and had

a physical evaluation last week with xrays of both knees, hips and wrists. It's

pretty crazy when they ask so many things, do this, do that, breathe in, breathe

out, look here, look there and then they start to repeat it all phrased in a

different way, Like I told the doctor, I am still not going to be able to bend

over and touch my toes just the same as when you asked me to reach down and take

my fingertips and reach for my toes....Gosh...I guess they do all of that to

catch people

that are fakers and really trying to cheat the system.

 

It has been really rough for the last several months. I was really feeling bad

in June and started feeling worse in July. By July 16 I literally thought I was

dying. I went to get out of the bed and hit the floor in pain. My 16 year old

son was the only one home and finally got me to the vehicle and to the ER. I was

calling my Dr asking him if I needed to go to the ER or go to his office and

passed out. Luckily he is also a family friend and was able to talk to my son to

get me to the ER. The next thing I remember I was in CT and had IV's and stuff

everywhere.  Come to find out, I had severe Pancreatitis. The doctor said he had

never seen a patient that had such a high level of Amylase and Lipase levels. He

said they were multiple of thousands times higher than they should be. I was in

ICU for 22 days. UGGH!!! Not fun. It was the worst pain I have ever felt in my

life. I'm usually a pretty tough girl...as we all know being in pain all of the

time. Even

after 75mcg Fentanyl, Patch, Oxycodone 10/650 4x daily plus Lidoderm patches

and many other things.... I am still always in pain. So... obviously I just

thought it was just a worse flare than normal. Also .... my diabetes was way

worse... I have been having to take on average about 100 units of insulin daily.

This is all so crazy. Not to talk about breaking the bank. The doctor didn't

even really want to release me from the hospital when he did but was really

trying to help me out. I had a PICC line for about 3 months and he was treating

me at home as much as he could. Thank God for great friends. The last insurance

quote I got was over $1800 per month with a $10,000 deductible. There's no way

we can afford that. Never in the world would I have thought at 35 I would be

filing for disability and hoping so much for I don't know what a $1000 check a

month or so. Especially after being successful and making $92,000 at my highest.

I guess none of us expect

it though... That's why it's the nasty dragon, huh?

 

I did finally get a little help on prescriptions. So far I have been able to go

through the and Patient assistance program and get the Duragesic

Patch. I have applied to several that I could find. Really couldn't understand

or maybe I did something wrong. Pfizer sent me a card that said that I could get

10% off of the brand name prescription. That didn't help much. I am still just

waiting to hear on the others. We are paying out of pocket for 17 of the 28

medications I am on. I get the Duragesic and the rest of them are coming as

samples from my wonderful doctor. I did check to see if I was eligible to file

for Medicaid and that was a helpful and disappointing day all wrapped together.

I was able to get some help as a spend down for my past 3 months, good thing

because it ended up being over $80,000 for that. And , by no means do I want to

sound ungrateful, I am very grateful. The bad thing is that in Arkansas they

said that I wasn't

eligible for Medicaid to help for future costs because I am not yet declared

Disabled by Social Security and because we have income in our household.... let

me mind you that it is my husband's SSDI which is $1002 per month. We also have

3 kids in the house. It blew my mind. I am trying everything I can. We're

charging everything we can and we're at the point that there is nothing left.

SSDI is such a long process. They want you to be at rock bottom and literally

have nothing left. It is such a catch 22 because you try to do the right thing

and be a productive member of society but look in another way people that try to

do nothing productive and it is just handed out to them... I so do not

understand.... I guess I just have to keep doing the right thing and eventually

it will happen.

 

Thanks to this group for always being a great sounding board..... I guess I got

a little carried away and long with this....The thing is ... I can always come

here and KNOW there are people that understand. I am still having a pretty rough

time with pain and mobility right now. I hope you are having as pain free day as

possible and as always will take any advice and suggestions that you give.

 

Take care....

Angelia

ville, AR