Update

April 4, 2003

That is quite a story, Tess. I'm not sure where to start.

If you don't mind saying, what is your current list of meds?

Do you still have swollen lymph nodes?

When you say that you doubt that drug-associated lupus is the problem,

what DO you believe is the problem? I think often patients have good gut

feelings.

The bank incident sounds ugly. I am very sorry that it happened. I can

understand how it was upsetting in so many different ways.

Maybe Em's friend is sad about leaving, and she's preoccupied with her

other problems. Perhaps this is just the way she is choosing to deal

with it all. She may not even realize the effect on Em. Perhaps she is

shutting everyone out. In any case, it can't be easy for Em and you. I'm

sorry.

And please give Em a special thanks for sending the post she did.

[ ] update

> Dearest Family...thank you all for your love & prayers. You are all

> precious to me.

>

> I saw my pcp yesterday...everything is pretty much the same. I am

> getting just " adequate " oxygen with the 3 inhalers, but not enough to

go

> off any yet. She believes it will probably still be awhile before the

> asthma hopeully goes back into hiding! Still monitoring the

> chills-dizzy-fatigue-fever-dry cough, etc. She is encouraging me to

> sleep as much as I can. She thinks the awful thing I coughed up last

> week was a mucus plug from the asthma. My chest aches. It hasn't

been

> this bad for so many years.

>

> A nice thing...doing all these upper body exercises is really paying

> off...in total I have gone down 4 1/2 inches on each upper arm, 3

inches

> on my neck, and 2 on my thighs. I am determined to keep it up. I get

> winded just sitting and doing them, but I try to breath in a rythmic

> manner...it's hard.

>

> I saw my rheumy today. He looked me over good and we talked quite

> awhile. He did give me an injection in my left wrist. He noticed the

> pinkish rash on my face, and talked about medication induced lupus. I

> doubt very much that's the problem but he ordered 9 lab tests. He

said

> he thought I should go back on the mtx. for now as the RA-PsA, etc.

is

> flaring and he's concerned about it getting too far advanced. They

are

> so sweet & kind to me there. I went to the lab and , another

> sweetheart, drew the labs but it took 4 or 5 pokes and 2 veins blew.

> She was upset with herself, but I wasn't as I know she tries to hard

and

> is so kind.

>

> I did something awful...Em & I had to pay rent so I sent her ino the

> credit union with money to get a counter check. The teller was just

> nasty with her and totally screwed up, putting our rent money into the

> wrong account. Poor Em, she came and got me...I was feeling so crummy

> and my patience level was low. The teller tried to blame Em for the

> confusion but the mistakes that were made could ONLY have been done by

> the teller...she accessed someone else's account with a similar name

to

> mine and divulged that person's account information, and wouldn't let

Em

> got the counter check even though Em has an account there as well. I

> was SO mad...I told that teller off and I even said she was

> " WORTHLESS " ...I meant to say her " help " was worthless, but I think I

> " Freudian slipped. " The manager came over and was really nice, but

when

> I got home I checked my receipts and one was from the OTHER person's

> account with their private account info on it. So, I need to call

ASAP

> in the morning and get this straightened out. Not that we couldn't

use

> the extra money...our rent got raised $30. a month, Em's hours are

down

> and we're still on a waiting list for Sec. 8 voucher. Anyway, I felt

> very bad for telling her she was worthless, that was awful. I know it

> would hurt me if someone told me that. And I hope the person with a

> similar name to mine doesn't have a heart attack if they see hundreds

of

> dollars missing before I can call in the morning.

>

> And poor Em...she is 25 and made her FIRST really & truly friend about

> 18 months ago. Em is my angel, but her disability does cause her to

be

> very overbearing and loud at times...she doesn't even catch it, and it

> has been so hard for her to make friends. Well, her friend, Shanel,

is

> moving to Wyoming next week, and for the past week or so has not

wanted

> Em to come visit. Em is crushed. She has been really close with

Shanel

> and her two little kids. Shanel is going through a lot of hard

personal

> stuff, but I am really disappointed in her for taking it out on Em.

>

> Joanne, I am SO happy for your good news! May your marriage and life

> together be greatly blessed.

>

> Our poor, beloved Debs! Golly, she doesn't need this!!! We all

prayed

> her through before, we'll do it again. I wish I could hold her little

> hand and pray with her.

>

> God bless little Dempsey with a very successful surgery & recovery!

>

> On a sad note...my cousin Bill just had a little grandson day before

> yesterday. They knew the baby had multiple birth defects, and he

faced

> many, many surgeries. At full term he was only 4 pounds. They named

> him after Great Grampa. He lived just under 24 hours. I know

he

> is healthy & well & happy with Jesus, but his mom & dad and big sister

> and grandparents are heartbroken. Please keep them in your prayers.

>

> I'm sorry this is a " book " , but I have to do things when I have a

spurt

> of energy.

>

> I read all the posts, but often am too pooped to do much else. I miss

> you all...the interaction we share.

>

> Love & Hugs to Everyone....

>

> Tess

April 4, 2003

Dearest ...for a long time Dr's told me I had " sero-negative lupus " ,

then they changed their minds. I have various rashes off & on, so this

was hasn't really bothered me. I would really be surprised after all

this time if lupus showed up - but I suppose if it was induced by

medication, it's possible. It seems I never quite " fit the mold " for

certain diagnoses, but because there are a number of indications, the

Dr's are always concerned. The only diagnoses they have not waivered on

are RA, PsA, Sjorgren's and FMS. What do I think is wrong? Sometimes I

think there's cancer somewhere...sometimes I think it's just " me " and my

topsy-turvy autoimmune pot-pourri. I do still have swollen lymph

glands.

My meds: Actos, Glucophage, Humalog Insulin, Humalin N Insulin,

Lisinopril, levoxyl, furesomide, flexeril, paxil, wellbutron,

amitryptilin, klonopin, vicodan, megesterol, mtx, flovent, advair,

albuterol.

The credit union supervisor just called...she got everything all

straightened out and apologized.

I'm so tired.

I told Em, too, that I don't think Shanel means to take out her

frustration on her...this just has truly been a " milestone " in Em's

life, and she feels so bad.

She's going to spend part of the weekend with her oldest sister and

niece & nephew...that'll help.

Much Love...

Tess

April 13, 2003

Hi Tess,

Well, I have finally gotten thru most of the mail. I have not written much

because my wrists is very painful from where they put the arterial line in.

My neck still hurts from the central line. This sepsis thing is no fun.

They feel that the sepsis is from pylonephritis but still feel that the

underlying problem is chronic osteomyelitis and for that they want to

amputate my leg.

I am going to call my original ortho and my ortho and see what their take is.

I find it hard to believe that this is my only option. The nurse from my

disability company called on Saturday and mentioned that when she worked at

the University of MN, they would start the patient on a rigorous antibiotic

home IV course to treat the myelitis. According to the nurse they had very

good results, this was given thru the infectious disease doctor. So I will

also look into that option.

I am glad that you are feeling a bit better. Those fevers are the pits. In

fact, that is what finally made me go to the ER via 911. My temp went up to

104.2 and I couldn't tell Ron from the cat !!!! Oops!

I am supposed to be on Kineret but in view of everything, I am afraid to take

a Tylenol that has not been prescribed. As it is, they have now discovered a

Lupus related clotting problem in my blood. So I a now the proud owner of a

prescription for Coumadin. Tomorrow I start going to my MD for the

regulatory blood tests. I feel a bit better, but still not myself yet. I

sleep a lot and have lost another 23 lbs. My appetite is nowhere back to

normal yet and my lips are all chapped and I have sores in the corners of my

mouth. Throat is still sore and schratchy from the NG tube that they had

down me and the TPN nutrition.

As I was reading all the posts, what struck me is the love on this board. I

am so proud of our daughters that they do this little favor for us by keeping

our friends posted on our condition. I know how blessed I truly am. My

church has also been a strong support for me and I plan to make all the

services during Holy Week.

I had a tiny bit of energy yesterday and went out and played the Easter Bunny

for the girls Ron and Vickie's boyfriend. I am looking forward to a very

blessed holiday on Sunday with family and friends.

I hope this trend continues for you my dear friend. Someday, I think we are

going to write a book together!

Love to you and Em,

Debs

April 13, 2003

Debs

I am so relieved to see you posting. You have scared the " bej*s*s " out of all

here. do what they say to do. If you have a lupus like related clotting

disorder you may also want to check the Mayo Clinic in ville. They are

very good with that type of evaluation. Went to Rochester Mayo a few years ago

for a similar thing- they were great and they have consulted on surgeries I

have had since. Good team to have on your side.

Love, In Mich.

> Hi Tess,

>

> Well, I have finally gotten thru most of the mail. I have not written much

> because my wrists is very painful from where they put the arterial line in.

> My neck still hurts from the central line. This sepsis thing is no fun.

> They feel that the sepsis is from pylonephritis but still feel that the

> underlying problem is chronic osteomyelitis and for that they want to

> amputate my leg.

>

> I am going to call my original ortho and my ortho and see what their take is.

> I find it hard to believe that this is my only option. The nurse from my

> disability company called on Saturday and mentioned that when she worked at

> the University of MN, they would start the patient on a rigorous antibiotic

> home IV course to treat the myelitis. According to the nurse they had very

> good results, this was given thru the infectious disease doctor. So I will

> also look into that option.

>

> I am glad that you are feeling a bit better. Those fevers are the pits. In

> fact, that is what finally made me go to the ER via 911. My temp went up to

> 104.2 and I couldn't tell Ron from the cat !!!! Oops!

>

> I am supposed to be on Kineret but in view of everything, I am afraid to take

> a Tylenol that has not been prescribed. As it is, they have now discovered a

> Lupus related clotting problem in my blood. So I a now the proud owner of a

> prescription for Coumadin. Tomorrow I start going to my MD for the

> regulatory blood tests. I feel a bit better, but still not myself yet. I

> sleep a lot and have lost another 23 lbs. My appetite is nowhere back to

> normal yet and my lips are all chapped and I have sores in the corners of my

> mouth. Throat is still sore and schratchy from the NG tube that they had

> down me and the TPN nutrition.

>

> As I was reading all the posts, what struck me is the love on this board. I

> am so proud of our daughters that they do this little favor for us by keeping

> our friends posted on our condition. I know how blessed I truly am. My

> church has also been a strong support for me and I plan to make all the

> services during Holy Week.

>

> I had a tiny bit of energy yesterday and went out and played the Easter Bunny

> for the girls Ron and Vickie's boyfriend. I am looking forward to a very

> blessed holiday on Sunday with family and friends.

>

> I hope this trend continues for you my dear friend. Someday, I think we are

> going to write a book together!

>

> Love to you and Em,

>

> Debs

>

April 14, 2003

hang in there tess, glad to hear you are still resting when you need it. i

would keep pushing them for answers and i would also stayy off remicade.

sorry honey....kathy in il

April 14, 2003

Dearest Deb,

I am so glad to see you posting and equally glad that you are home with your

family. You have been through so much. Rest my friend and take care of

yourself. My prayers are with you.

Lynn MeMom

Auntblabbie2000@... wrote: