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I love enbrel. Even though it is not working as well as it did when

I started a year and some months ago. I still love it. I want

double doses but the doctor has poo-pooed that and is submitting to

my insurance for the remicade. Since I spend too much time at the

doctors office anyway, I'm not thrilled about spending the time for

the infusion, at least for the beginning, when it's every two weeks.

But if it works, I'll be happy to sit in the chair as long as it

takes. If it doesn't work he said I could go back to enbrel or try

humira or whatever I want. I'm thinking if he puts me back on

enbrel, he'll treat it like a first time event and put me on double

doses for the first 3 months, as is standard practice now.

I sometimes don't like to face this disease. But today, we all had

to push pencils in the office instead of using the computer. I

almost had to quit and go home. I took my horse pill motrin to no

avail and I had forgot to bring my vicodan with me. I guess we will

be pushing pencils for a few weeks on this phase of the project and

I'm not sure I can do it. My fingers hurt all the way up into my

jaw. This was no ordinary writers cramp. Others seemed to handle it

fine. As it is I have had to take lots of steriods, mtx, enbrel,

motrin, vicodan, ambien, neurontin.. gee am I forgetting

anything?...yes I am.... just to be able to work the last couple of

months. I have a sit down job. Even the 40 hours is too much for

me.

Fortunately, or unfortunately this job is just temporary. For a

long time I was out of work, had lost my business and was too sick to

search for a job. I spent all my money just taking care of me. But

I don't have that luxury anymore. This disease has taken my ability

to work and live a normal life away from me. Not that I have ever

had one. Psoriasis covered my body by the time I was 12 and there

was no normal after that.

But I have had times when I was able. Methotrexate gave me a new

lease on life 17 years ago. Even though it makes me terribly tired,

gives me mouth sores, brain fog and hot flashes... it was still

better than what I had.

Most recently I was my Doctor's poster child and now he's

frustrated. Poor him. But poorer me.

Hope springs eternal for the next wonder drug. Maybe the remicade

will do the trick. Or maybe it will just do me in. Sometimes I

think either would be fine rather than to stay in misery. (do I get

a little cheese with that?)

ugh.

Thanks to anyone who had the time or patience to read this far.

Lori

I have an appointment with social security but I will have to cancel

because I don't have enough time or energy to prepare for it.

I'm hoping to get a part time job that will pay at least as much as

my social security were I to actually get it. I have an appointment

with them this week. I have been to tired after work to even think

of preparing for the visit and don't have any of my paperwork ready.

Plus I'm just not mentally or emotionally up to the task at the

moment. Because I am working, it's iffy whether I will qualify or

not, but the only reason I am working is because: A. I haven't gotten

fired for being sick yet. B. Not working would mean not eating or

having a roof over my head. C. Because I haven't wanted to admit

defeat.