Just some thoughts for Newcomers and Newly Diagnosed...

[Guest guest]

Dear Group Newcomers AND those newly DX w/ RA (Lupus, Fibro,OA,

Ankylosing Spondilitis,etc.):

Here are a few thoughts from someone who's been dealing with these

illnesses from " both sides of the fence " for a long time. Just about

the time I graduated from Nursing School (with a Bachelor's in

Science) in 1987, I first began having symptoms myself. I'm not

suggesting that I am an expert on either " side " but over the past 17

years I have observed, experienced, and learned a thing or two (many

times from mistakes!) that may be of help to someone here -

especially those newly diagnosed with a painful auto-immune disease.

Rheumatoid Arthritis (from here on just referred to as RA but

being inclusive of any painful auto-immune disease) is a difficult

diagnosis to deal with, esp. when one is so young. I think MD's for

the most part do a terrible job at advocating for us, educating us,

and helping us settle into our disease. We need a lot of information

about how to incorporate these changes into our lives.

First, there's the " nuts and bolts " of the disease:

" What is it, and how is it treated? "

For many of us, just getting a diagnosis was a long hard battle.

Then when you first hear a definitive " You have RA " there is a sense

of ambiguity. Part of you is so relieved to finally be able to call

this myriad of symptoms by one word (and to know you're not crazy or

a hypochondriac -like so many MD's make us feel!), but then

the " other " part of you is feeling like you've just been hit square

in the face with an iron! As the reality of " knowing " begins to set

in, the questions come:

" Why did I get this? " (Now you can ask this question 5

different ways- just emphasize a different word each time, and the

question will have a different spin to it!)

" Will I die from this? " (or will it shorten my life-

expectancy?)

" What exactly is RA? (and the questions that go along w/

this: Is it hereditary? Did my environmental exposures play a role in

this?)

" How is it treated? " (and of course that depends on which

symptoms you're talking about: " Treatment " implies cure, and while

there is not a " cure " per say, there are modalities that halt

progression, or even " restore " function to a point (NSAIDS,

Methotrexate, steroids, etc.).Then there is the PAIN- alleviating

componant (which MD's seem to be fairly opinionated about: although

they are NOT always expert about!)

Then there is the questions/anxieties about " How is this going

to affect my employment status? " I can't think of many careers or

jobs that are not impacted by the symptoms of RA. Logistical aspects

impacted can be:

Mobility / manueverability: " Will I be able to perform the

physical aspects of my job, and for how long? " " What rights do I have

in the workplace? Will they alter my office space if neccessary? "

Fatigue / pain: " Will I always be this tired and painful?

Will it get worse? Will I be able to take pain medication at work -

and function? "

Then there are security issues: " What if I have to cut back on hours -

can my employer fire me? " " What if I run out of sick leave? " And as

we all know, this may very well progress to the point where we cannot

work at all.

" Can I get disability from my employer? How long will that

be in effect? "

" Will I have to PROVE I can't work? How would I do that? "

Long-term disability issues: I don't know what the actual

statistics are, but too many of us will be confronted with the

reality that we will no longer be able to provide for our families.

You may have questions about how to even get started with a claim;

and when to get started. I have NEVER heard of someone getting Social

Security Insurance awarded the first time they apply. I even knew of

someone who had severe congestive heart failure, and had recently had

quadruple bypass surgery. His MD absolutely FORBADE him from working -

and even with all that hard-core factual documentation, he was

denied SSI ! They (SSAdmin.) was not convinced that he couldn't work

at " something. " It didn't matter what HIS MD said! Of course, he

eventually won but had to pay his attorney 1/3 of it. Many people

theorize that the first attempt is always denied as a means

of " weeding-out " those that are fraudulently applying, but my

personal feeling is that they are actually weeding-out those who are

just too sick and tired to endure the appeal or process " one more

time. " I think it is absolutely criminal!

Then there is the the more 'abstract' issues of the disease:

Identity: I think this is one of the hardest issues to come to terms

with. For many of us, we saw ourselves in terms of our careers; " I am

an RN. " I still say this. Because I AM an RN, thru and thru to my

soul. It is who/what I was born to be/do. But it is actually illegal

now for me to portray myself as an " RN. " Since I haven't been able to

work in an RN capacity, thus keeping up with the requirements of my

license, my license has expired. So I am no longer a " Registered "

Nurse.

We also see ourselves in terms of our roles; wife, husband,

mother, father, sister, brother, daughter, son, friend, mentor, etc.

How we define the role will ultimately define whether we see

ourselves as a success or a failure in that role. Let's

take " wife/husband: " assuming that the majority were NOT sick when we

married, we probably had envisioned the way our future marriage would

be. In general terms, I saw my " wife " role as: 1) the " relationship

facillitator " - you know, the one who inately kept " track " of how the

relationship was going. And as such, took steps to keep it from

derailing. I think this is natural for women whether they actually

think about it in these terms or not; 2) The " nurturer, " keeping my

man content and able to do what he goes out in the world to do.

Reinforcing him from the cruel blows of the world. With hugs, kisses,

foot rubs/soaks, massages, a listening ear, a tempered tongue, a

chearleading attitude, etc; 3) The " pleaser, " physically addressing

his needs, and this included keeping myself pleasing to look at,

being imaginitive, and having an open mind; 4) The " partner " -

completing us as a whole, i.e., accelling in the areas that my spouse

didn't, like budgeting, taxes, paper work in general. Keeping up " my

end " of things so he didn't have to worry or concern himself with it.

Now, before you women, especially those bent toward the " lib, " start

throwing tomatoes at the moniter (or just give up on me as a 50's

throw-out!) keep in mind that I was very young and idealistic when

first married. Plus I tend toward " perfectionism. " But also these

things that I wanted - and tried- to aspire to, when reciprocated by

your spouse, makes for a truly fulfilling marriage!

But the point is we all go into relationships are see ourselves in

our relationships as something that once we experience the ravages of

RA, BECOMES SOMETHING ELSE! And usually that " something else " can be

defined by one word: " failure. "

Between the people in our lives grappling to come to terms with

the things that we no longer are (or can be for THEM), and the areas

that we ourselves have come to see ourselves no longer capable of

fulfilling, we can't help but feel like we are failing as

wives/husbands, mothers/fathers, friends, etc. And very few of us

have real support. Wouldn't it be so nice just to hear your spouse

say (and mean) " I married you for worse, and sickness, too. You are

so worth my love and devotion. I know you do the best you can, and

you know what? I don't see you as a failure... I see you as my HERO! "

(or something to that effect) instead of " Oh, you couldn't clean the

house (make dinner, go grocery shopping, take a shower, pay the

bills, fix yourself up, do the laundry, etc. etc.) again, today?

Nobody has a clue of what we do manage to accomplish and at what

cost. Many of you ladies can identify with how you " grin and bare it "

through the pain to try to satisfy your husband, not letting him know

how excrutiating that (any) position is, so as not to ruin his

pleasure. Meanwhile, how many of us have given up on " pleasure " a

long time ago? How sad. And yet we see ourselves as failures!

Grief: We need to be prepared for the fact that we are going to

grieve - and what that feels like. And that our spouses will grieve

too, even though they may not realize that's what they are doing.

They may feel cheated, angry, impatient. We have SOOOoo much to

grieve...so many losses: the future we had invisioned (this is a

difficult one for our spouses, too), our youthful energy and sense of

health and well-being; our very " identity " ( changes from " "

or " Sandie " , to " RA " or " Lupus. " I actually used to think that others

saw me as " Here comes Lupus " vs. " Here comes . " Pretty distorted,

but not that uncommon!); our relationships with everyone changes.

There are insecurities and questions we never dreamed we would be

asking... like " What value do I have now? " and " Will my husband still

think I'm beautiful/attractive/desirable? " Every part of our

relationship with our spouse will change - no matter how long we've

been together, or how strong our committment is. The dynamics of

power shift. Communication changes. The things that help " bond " us

together, may now be awkward, or painful.

RA, Lupus, Fibro (all the auto-immune diseases) ROB US OF LIFE WHILE

WE ARE STILL LIVING! And everyone is on a different time-table of

learning how to cope with and integrate the disease into this new

life. I think the single biggest contributor to being a help or a

hinderance - is the DOCTOR. If he's a hinderance,it's just not fair

that he has so much power -and that's just what it is: POWER. But

there are ways to level the playing field:

1) Keep in mind that this is YOUR LIFE! You are ultimately going to

be the orchestrator. You still have power - more than you know.

2) Keep in mind that your MD has his own life. By this I mean he has

his good days and bad, his moods, his family issues, his own health

issues, his biases and prejudices, and his own limitations. He is

nowhere close to being God, no matter how much he may think so. He is

a regular person. Try calling him by his first name! Seriously, this

will give you a lot of information about him. After all, you are

supposed to be a partner with him in your care. If he is too

egotistical to be thought of as a partner (rather than the dictator

of your care), then possibly he is not the right choice for you! You

can also try these measures: ask him " Is this the advice you would

give me if I were your wife/daughter/son/best friend, etc. " You would

be surprised at how this question can change the whole dynamics

between you two. Or just come right and say " I get the feeling you

really don't like me much " ...or " I never leave here with the

satisfied feeling that I have been REALLY heard! " ... or " I deserve to

live as pain-free as possible, don't you agree? "

I am serious people! These Dr.'s are just people. Sometimes they

need a wake-up call about why they got into medicine in the first

place!

3) Journal everything about your health. Keep a journal or notebook

with the expressed purpose of giving it to your MD. Write down your

symptoms everyday. If writing is too difficult, make a legend in the

front of the notebook so that you can just write the minimal for each

day after that. For example in your legend you could have something

like:

H = headache P =pain; with scale of 1-10 (1 being only a minor

nuisance, 10 being completely incapacitating) S= spasms Sw=

swelling B= bed-ridden

D=depression;w/scale 1-10 (1 being a little sad but able to carry on

w/daily routine; 10 being distraught w/ suicidal thoughts)

Maybe a daily entry would look like this:

6/15/05: P/6 -hands, knees; P/4 -hips; Sw-fingers R hand. D/7- really

tired of this pain. Yelled at my kids. Couldn't make dinner-too

exhausted. To bed @ 8:00 Pm

MD's love this kind of documentation! It's very helpful to them and

you for seeing trends and a realistic view. Most of us are horrible

historians because our memories are poor (due to lack of restorative

sleep, disease, depression, denial,etc). If your working on a claim

this will really help your MD " justify " his support of your claim.

Just tell your MD youv'e brought a journal of your symptoms - and

watch him smile!

4) Be organized! No matter how exhausted or depressed you are, this

is the single most important thing you can do for yourself! What I

mean is keep in mind that your MD is probably rushed, with minimal

time for each patient (esp. if she is a GP). If you go in overwhelmed

yourself-not knowing where to begin, and bringing in every complaint

and problem you have ever had (many of us do simply because we are

not sure what is and is not important) -you WILL overwhelm your MD!

She will probably try to prioritize for you (and not necessarily the

way YOU would have liked)and only focus on 1 or maybe 2 concerns; and

you may be made to feel foolish or like a hypochondriac or just not

taken seriously. You will leave without your needs being met.

So,a) go in confident that you have a problem that she or he

will address;

take your documentation with you; either your lournal or a list of

concerns that you have spent some time thinking about. You need to be

prepared to discuss the symptom, when it occurs, its character

(consistent, random, type of pain if thats the concern:

sharp/stabbing/penetrating/searing/throbbing/aggravating/numbing/tingl

ing/etc),what makes it better, or worse, when did it start,etc., and

c) be realistic! You only get typically 10-20 minutes! Make it count;

and be prepared to make more appointments to discuss the things you

didn't get to.

5) Don't be afraid to change MD's. There is one (maybe even more than

that!) out there that is just right for you. Did you know you can

actually " interview " an MD? Insurance generally pays for this. You

just call the office, and tell them you want an appointment to

interview the Physician to ensure a good fit! Tell them you would

prefer to consult w/him in his office (vs. a patient room). They do

get these kind of requests from time-to-time, so they will know what

you are talking about! And once again, bring in a list, only this

time it will be about what is important to you as a " partner in your

care " . In this interview, you can ask him how accessible he is,i.e.,

can you call him directly or do you have to go through his asst?, how

long does it take to get in to see him -for initial appt; acute care

appts, follow-up appts.; what is his philosophy re pain management;

is he " expert " in the area of ______insert your disease or concern (I

was seeing a Rheumy for years before I asked him if he was an expert

on fibro - I just assumed every Rheumy was. He said " NO! " that he

really didn't keep that current on it because it wasn't a big

interest of his! I also saw him for Lupus, but a lot of my claim

issues at that time had to do w/ my fibro symptoms!)

It is important NOT to bad-rap other MDs during this interview. No

matter how " bad " the other MD was, and even if that's the reason why

you are now interviewing this new MD, talking negatively about an MD

will almost always cast YOU in a bad light to the new MD!

I hope these tips help you newer people. Please feel free to write me

any time,

A friend,

[Guest guest]

Well said, .

While my " hay day " was during the 80's/90's, I can see your point

with the spouses. While I will not throw tomatoes at the screen, I

will say this.. not all spouses are created equal and not everyone

is cut out for the part that says " in sickness and in health for

better or poorer…. " And that was something that really

should have

been addressed before saying the words " I do. " However, we

women

overlook a lot of stuff when we feel this is our last chance at

getting married before turning 30, me included. lol I personally

feel the husband should be freed to find someone healthy once they

lose respect for the RA/autoimmune sufferer because she is no longer

a provider among other things, some just can't deal with the

illness. That was not in their vision of a marriage. It isn't a

thing to do to change their point of view. But there is so much

more involved than just that. That is one issue that really never

gets discussed. It is just like you being a Nurse and you loved

being a nurse. There are some people who are nurses who absolutely

hate being around sick people. I know someone personally. I grew

up with her. She trained as a nurse but hated being around sick

people. She did this job for nine years! She took on an identity

she was not totally prepared for -- with all that can happen in

this profession. I think sometimes husbands, because they are not

generally considered the caregivers of the family, are just not

prepared for a wife becoming chronically ill. Whereas, in my case,

I wanted a perfect healthy daughter and even thought I was not

prepared for all that was entailed in having a chronically ill

daughter, I didn't dare trust anyone else to care for this

precious

jewel of a child and any help I took on would be a partnership with

me, her mom. I chose her hospital carefully, her neurologist,

physical therapist, but I was in it for the long haul regardless of

how draining it could sometimes be. I wanted to make sure I gave

her every chance possible of one day making it without me in case I

wouldn't be there. Well spouses are not thinking like that and I

am

not sure if they should. A lot of them feel overwhelmed and ready

to abandoned ship at the first sign of trouble. I can't tell you

how many people I have met who got lupus or OA who told me their

spouses left because of the illness. And these were women who ran

the bath water for their husbands when they got home, massaged the

backs, cleaned the house, cooked the meals, cared for the babies,

etc, and loved and adored their spouses -- would stay to the end if

the shoe were on the other foot. So there is so much more to this

subject and happiness is key in staying pain free.

However…the core of the issue is more important and the core is

fighting the condition.

I feel you covered every aspect of the condition spelling out areas

we could not put to words ourselves, putting the emotions to words.

This is a very up and down condition we have to remain hopeful even

through the rough spots and thank God (and Dodie) for this site.

A lot of us don't have support like you said, so this site gives us

that. And it is not just the MDs who thing we are hypochondriacs,

in some cases family members like mine of course (lol) believe our

symptoms are all in our heads, especially the pain part. I have

never adequately been treated for the chronic pain, as soon as I

noticed the attitude was automatically drug seeking. I refused to

even mention pain and only go when I am scheduled to go for

refills. I have been forced to live 10 years, 365 days a year with

burning piercing pain and had to care for a disable child with this

excruciating pain. So, I learned real quick not to ask for any help

with the pain, which I personally feel we shouldn't have to ask,

it

should be automatic. Did you ever see the movie " Powder " where the

guy in the movie touched the deer lay there dying, then touched the

man who shot him to show the man what the deer was feeling. Just

once I would like to touch the person who thinks it is all in the

sufferer's head and for that reason isn't treating the pain part

of

it, just to let them understand the benefits far outweigh the risks

to treating the pain as well. Enough about that stuff. I feel this

is something we are all experiencing just by sharing with a few here

at this site that it is very complex.

For many years, friends and relative have said I didn't look sick

which left me feeling they just didn't have a clue. Even my present

rheumatologist who I haven't seen since losing my daughter, feels I

look just fine to her even though I walk like a primate, this

happened after 6 months of being treated by her. She seemed to be

amazed at how quickly my hips deteriorated but didn't seem to do

much to change that. She gave me injections in my knees of steroids

to help my hips. She said it was body mechanics and that I was

protecting my knees so my hips stiffened. No, it was steroids and

enbrel in my case, not every one will have the same reaction. If

you are lucky enough to get the enbrel I recommend it. It was worth

it for 9 months and then after that I should have switched to

something else but I stayed on it for 6 years, since it came out.

My point is, you are so right when you say maybe that particular MD

isn't for you. The thing is there are sooooo few rheumatologists

turning out every year, the ones we have are overworked and not very

attentive. I recommended physical therapy for myself, she didn't. I

actively sought out a therapist for my hips. Even he was too afraid

to bother with my hips, but they gave me whirlpool therapy and

swimming pool therapy to try to improve my gait. If you are lucky

to get a good MD, hold on to him/her for dear life. I am still

looking. Until then, I will take what I have learned through the

years and do the best I can.

Now fighting the condition with diet and exercise and prayer of

course.

Love and peace,

Ebony

[Guest guest]

In a message dated 6/16/2005 5:48:33 A.M. Eastern Daylight Time, writes:

Just some thoughts for Newcomers and Newly Diagnosed...

... thanks so much for sharing all your insights and info -- I know it

will help many of us!

Love and Prayers,

Beth

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