LONG UPDATE

[Guest guest]

Hi Everyone,

Haven't posted much since I joined but I have been following all the posts.

Thank you for all your helpful information. It has been a belssing.

I did have my first visit with my rheumatologist who agreed with my GP's

diagnosis of RA based on all the tests taken previously. I like her. She took

the time and listened to my work/home situation, my financial/insurance

situation, and my concerns about the RA drugs.

My life….. past.

I'm single, divorced twenty five years ago (once was enough). My children are

grown and I've lived alone for twenty five years. As such, I'm extremely

independent and hate asking anyone for help. The last thing I, or I suspect any

of us, want is to be dependent on our children. I work full time as a

secretary/data entry in a real estate office, the biggest and busiest in the

county. Though with the real estate crash, all the staff have been cut down to

four days a week, which has put a real strain on finances. Barely making it from

pay check to pay check. Though that seems to be the norm for most people these

days.

At least I have insurance, such as it is. It pays the minimum with a $2,000

deductible, which I've more than met, struggling to get those paid off. So, the

more expensive meds with high co-pays are out of the question for now.

I'm also a published author – writing the love of my life, next to my children.

It's the one thing in my life that excites me, excited to see what will happen

next on the book I'm working on. It makes me feel good about myself. Currently

working on a new novel that I believe can be the best, most successful thing

I've written to date……

My life … As it has become with RA….Hands, wrists, and fingers affected so far.

I started the year taking only Simvastatin for cholesterol, Levothyroxin for

thyroid. After my last big RA flare, Atenolol for high blood pressure was added

(my blood pressure had always been on the low side. I hate being forced to take

any drugs but had resigned myself to taking those three for the rest of my life.

I suspect you all know what happened next. Meloxicam for pain, Omeprozole for an

ulcer to counteract the effects of the anti-inflamitory medications and now

Plaqinil for the RA for two weeks so far. If that doesn't work, my rheumy will

add Sulfasalazine. So far all are in generic form, with minimum co-pay, a few I

can even get a three month supply for one co-pay. And I have a prescription for

something to help me sleep which I only take if I've had several sleepless

nights in a row and am exhausted and barely able to function. I don't want to

become dependent on them.

I'm just a few years from being able to retire with full benefits and medicare.

Retiring early is not an option financially and still being able to make my

bills, and afford to eat.

My work week starts out waking up an hour earlier than I used to. Depending on

how stiff and painful my hands and fingers are. I may hold my hands under hot

running water to get them moving, knowing my day is going to be spent at a

computer. Some days are better than others, as we all know. Some mornings I

would give anything to be able to just stay home and stay in bed until the pain

and stiffness eases. NOT AN OPTION. We're short staffed as it is at work.

Business is picking up and I have to be there. I simply tell myself that I'm

lucky to still have my job and insurance, and, I know that as the day wares on I

will feel better. If I stay home I'll accomplish nothing and be depressed,

stressed about money. Stress is one of my main triggers.

So I get up and go, and push myself to get through the day at the office. Of

course I have to eat something to take the drugs. Then deal with the nausea for

an hour or so. Attempting to be up-beat and friendly, not at all like the bitch

I often feel I am becoming, instead of the positive, nice person I've always

believed myself to be. So far, only my office manager knows how bad my RA has

really become. Her mother has RA so she is very supportive and understanding. Of

course it's only a matter of time until we'll be forced to sit down with my two

bosses/owners and discuss options, such as allowing me to come in late on bad

mornings and working later on those days. My bosses are great so I'm praying

they will work with me. As long as my fingers move, I can do my job. And of

course, maybe the Plaquinil will kick in and it won't come to that. I would say

keeping my fingers crossed but that HURTS. I have to hold onto my paid sick days

because if I have a bad flare my hands are totally useless. I can barely hold a

spoon to feed myself. Those are the days that I have to see the doctor for a

shot of Cortizone and a round of Prednizone. So I only miss maybe one day of

work.

I was one of those people who read or listened to all the side effect warnings

on medications a swore that I'd never take any of them. That the drugs cause

worse problems than the diseases they were supposed to treat. That the benefits

weren't worth the risks. Yeah right! Easy enough to say until you are forced to

make that choice.

I've started rating my days by the pain chart the doctor uses. Number 2-4 pain

days have become the norm. I consider them good days. 5-8 days are rough but I

can push through them, maybe cheat and take a couple of OTC Motirn along with

the Meloxicam to help me with the pain. 9-10 days… need I say more?

By the time I get home, the fatigue has kicked in, wrists and my fingers hurt,

and I'm wiped-out. However, I need to fix something to eat. Have to eat to keep

going but my appetite is non-existent. And of course have to eat to take more

meds or the nausea will be worse.

My weight loss has been dramatic. The only good thing about that is that I can

now wear clothes I haven't worn in years, so I feel like I have a new wardrobe.

Also good because I can't afford to by new clothes with all the medical bills.

And of course my new book is on the computer waiting for me. I've barely written

a chapter since the first of the year. By the time I get home from work I have

little to nothing left each day. I can't focus or concentrate. The words that

used to come so easily is often a depressing exercise in futility. Especially

since I believe with everything in me that if this book does what I believe it

can do, it would be my solution to early retirement.

I get so frustrated and angry with myself because writing is such a huge part of

who I am and what is important in my life. What used to give me so much pleasure

has now become a painful struggle.

Like everyone else. I want my life back!!!!! My home was always spotless. Now I

can barely manage the basics. If a room needed painted. I did it myself, moving

furniture, etc. Not any longer. Now when the yard needs mowed or weeds need

pulled, I have to wait until my son can do it for me, or have to pay someone to

do it. I HATE IT! You know, I honestly think I could learn to live with and

manage the pain, but, the fatigue and loss of independence and having to rely on

others for the things I was always able to do for myself is the hardest to

handle for me.

There you have it. My update. I keep telling myself that it's still early on for

me, that maybe the lesser RA meds with fewer side effects will work and things

will get better, that my life will return to something resembling the normal I

used to know.

Wishing everyone more normal, pain free days ahead.

Kay