Debs in Florida - LONG WARNING!

[Guest guest]

Dearest Debs,

Thank you so much for your concern. With all that you are going through

right now, you are very sweet to worry at all about my minor problems. The

bug is banished. Except for those few hours when I thought I was going to

puke, I escaped. So did little . The other two weren't so lucky, but

they are feeling good now.

The icicles have long since dropped from the gutters. Fortunately, they

didn't kill anyone on the way down. It's snowing again now as I type. We are

going to have messy, rainy, icy, snowy weather for the next few days. Can't

wait until bus time tomorrow! Should be delightfully freezing and slippery.

All three kids are hoping for a snow day. I'm not sure what I'm wishing for.

We can sometimes see the pavement (like this morning), but I haven't seen

the grass in a long, long time.

I'll think of you and your lights and deer every time I look at my lights on

our front windows. They are the only Christmas decorations that remain -

tiny white lights lining the insides of the windows, each rectangle casting

a soft, warm glow in the rooms at the front of the house. The kids and I had

a hard enough time getting rid of the tree and putting away the other items.

We can't bear to remove those yet. I hope you never lose your soft spot for

wintry Chicago.

On to those big problems of yours ...

My heart grows heavier with every post of yours I read. I apologize for not

writing sooner. Part of my problem in responding is that I want to be able

to tell you that I have a brilliant solution to at least one of your

dilemmas. Right now, the best I can say is that I truly care about you, but

that I'm not sure what else to offer.

You have had a terrible time over the last several months (and maybe even

before that - I'm not sure), but the loss of your husband's job and your

struggle to try to continue to work is an awful situation. Your staggering

burden seems quite unfair. I wish I could magically turn that bacon into

beef tenderloin and that you wouldn't have to bring it home, that it would

be delivered to your door.

I did some reading and searching about your doctor's decision to take you

off the Enbrel temporarily while you begin the methotrexate. So far, I am

mystified. I'm not too thrilled about Walgreen's and their efficiency

either. You are perfectly entitled to get snippy about their snail's pace.

Also, I don't share your rheumy's philosophy on pain treatment. I'm assuming

he meant that he would rather eliminate the source of your pain than mask

it. That's fine, but, until he works that miracle, you need relief. You have

done nothing but suffer lately, and that should NOT be.

I hate to recite my " It's Time for a Second Opinion/New Doctor " speech,

because I hesitate to risk adding more stress to your life, but I must. I

know you are probably fed up with looking for someone better to help you

each step of the way (for example, I remember your story about the GI

idiot), but this rheumatologist you are seeing doesn't really strike me as

someone solidly in your corner. I'm still fuming for you about the fact that

he returned your husband's call immediately after ignoring several of yours

for days. If at all possible, I would consider seeing someone new locally or

going to Mayo (that way you could see a rheumy, GI doc, and ortho all at

once).

I've been thinking something else about your diagnoses that I've been

reluctant to voice, again because I don't want to add more trouble to your

life, but I'm going to ask you to consider something carefully. You've said

in the past that you have diagnoses of both RA and lupus in addition to

other things. In my stay here with this group, several people have mentioned

that same combination.

The true concurrence of RA and lupus is rare (unfortunately, it is not rare

for a physician to mistakenly diagnose both). I'm not saying that it is

impossible that you indeed have both (or that anyone else here does), but,

what I am trying to convey is that, since it is very uncommon, the number of

people in our group who have been told they have the same combination defies

the odds. Every time I hear it, I worry that the person who has this pair of

diagnoses has received one in error and, thus, is receiving the wrong

treatment.

Although they share some of the same manifestations, RA and lupus are

thought to be very opposite disease processes in many ways. Depending on the

nature of your particular disease, the appropriate treatment can vary

greatly.

I'm don't think you ever detailed your medical history - the blow by blow

development of your problems and how the diagnoses were made. I would be

very interested to hear the whole story any time you would be willing to

tell it.

This is my long-winded way of asking whether your medications, Enbrel in

particular, are really a suitable for you. What if you have only lupus and

not RA and the Enbrel is making things worse? There are some rheumatologists

who recommend Enbrel for lupus, but there are many who don't.

I know that the medications aren't the only issue for you in all of this,

but it is a very important aspect in controlling your pain and disease. I

also worry about your precious kidneys. Do you mind telling me what sort of

kidney involvement you have? You've also questioned before whether the drugs

are really doing anything for you.

You asked in a previous post about your methylprednisolone injection. It is

possible to receive too high a dosage of corticosteroids or too much within

a period of time, but I don't really know how much you had each time. Here

is a good link about methylprednisolone:

http://www.medsafe.govt.nz/Profs/datasheet/d/Depomedrolinj.htm

I'm sorry it hurt so much and I hope that it is feeling better now. Doctors

use intramuscular injections when they are looking to relieve inflammation

systemically rather than locally. If you came in and told him that your

shoulder were really bothering you and the rest of you were OK, he would

give you an inter-articular injection in your shoulder. Does that make

sense?

I'm worried about your knee, too. And your back. And your hands. And your

kids and husband and job. And, most of all, you.

I'll end for now, Debs, before I put you into a coma with all of this (will

the real Aunt Blabbie please stand up?). Please know that I'm not trying to

add confusion or pressure to your life with anything I've said or asked or

suggested. I think you know me well enough by now to realize that I am only

trying to help by opening up a dialogue about these topics with you. I'm no

medical expert, but I do really care about you.

With love,

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

From: <Auntblabbie2000@...>

< >

Sent: Saturday, January 27, 2001 12:10 AM

Subject: Re: [ ] Better Days

> Hi ,

>

> Hope you and the kids are feeling better after your " bug's life " ....My

sister

> & her daughter are both battling the " sniffies " . Even on the Enbrel,I

have

> somehow managed to escape going to an iron lung with all the colds & flu I

> was exposed to during the holidays even with the deep freeze we had.

> However,I am paying for it now with my joints. Mainly, my hands, back &

my

> new knee which continues to swell with fluid & is extremely painful. The

> doctor put cortisone directly into what used to be the knee joint in an

> attempt to " calm down the irritation " To this date,I am still iritated.

I

> am also losing some movement in that new knee. I see the ortho is 2

weeks.

> He says that if this fails, he will need to go in with an arthroscope.

Not a

> very happy camper about that. Am trying to return to work, 2 days one

week,

> 3 days another week.......not very dependable. I am now filling out the

> paperwork for long term disability thru my employer. My employer has been

> very understanding about this, but I don't want to push my luck, seeing

how I

> am the only one bringing home the bacon in my house. My bacon is fastly

> turning to tube steaks (hot dogs) & probably bologne not too much longer

> after that. My husband still hasn't found a job yet, so tension is like

> something we could cut for dessert everynight............

>

> My rheumy gave me an injection of methylprednisolone on Wednesday night,

> with some relief. I also am suppose to start MTX along with the enbrel

but

> to stop the enbrel for 2 weeks. We were his last patient on a very long

day

> for the dr, so he wasn't real keen on explanations....Left the MTX rx at

> walgreens on Wednesday, & it won't be in until Monday, gee good thing it

is

> not a life sustaining drug. Perhaps if they didn't put so much money into

> building walgreens on every corner,they could purchase more stockable

> medication. OOOH, there goes my snippy pants again.LOL

>

> How are those icicle??????have they melted yet or are they holding out for

> spring???? Can you see pavement yet from the snow yet or is that the

same

> thing as the icicles?????I have kept my icicle lights up & lit along the

> back fence by the pool in addition to my Christmas deer. It kinda makes

me

> feel like it is a little bit of winter in sunny south florida. I guess

you

> can take the girl out of Chicago, but can't take the Chicago out of the

> girl...LOL

>

> Please take very good care of yourself & the kids. I have missed our

chats.

>

> Gentle angel hugs,

>

> Debs in FL