lupie

Here we go lupdieloo here we go lupdielie here we go lupdieloo ... all on a Saturday night ....

ok, it's Sunday ... but hey ...

My blog, originally was started out as a patient blog. It's turned into a general interest blog with occassional postings of being a patient. When I do post about being a patient, it's very purposeful ...

Today, I'm posting in hopes of coming to grips with how I'm feeling ...maybe.
Maybe if I can describe for myself how I'm feeling ... maybe I'll actually believe it myself and allow my body to get the rest it needs.

Denial is a big part of being Chronically ill. So few people who are not chronically ill understand what it is like, that those of us who *are* try to make it easier for those who are not. We don't want to make life more complicated for those who are in our lives than it already is.

We don't like the sympathy rather than empathy. We don't like the statements of false hope when we need understanding and we certainly don't like the doom and gloom when we need statements of hope. The problem there is ... no one can read our minds and be able to tell us what we need to hear and often we don't even know what we need to hear ourselves!

To be told "it's all going to be ok" when we know ..."NOTHING is ever going to be the same again" and quite frankly ...that is NOT okay is not easy to hear. It is frustrating and sometimes downright overwhelming. When we are told by someone who is healthy "I know how you feel"
it is ... frustrating to say the least ...and sometimes cause for anger. Excuse me ... when you wake up and you stand up, and your legs don't function, you go to step and your knees buckle ... and you have to wait for 20 minutes after you've taken your medicine that helps your muscles function (Mestinon) before you can even take a step ... then, and only then ...can you say "I know how you feel."

A cold 2 times a year does not let you know how I feel. I dare say that I feel worse on my best day that you feel on your worst day. (Assuming you are healthy! If you are reading this and you are not healthy, then I'm not talking to you) If, I did not know what was wrong with me, and I woke up feeling like I do on my best day, I would jet off to the doctor in a panic of what in theheckhashappenedtomybodysomethingisdesperatelywrongohgodhelpmemybodyisfallingapart!!!!!



Ok, that is not what this post was supposed to be about ...that was what my I hate 10 things was about the other day. I guess I'm getting a lot of false sympathy in my life right now and it's annoying the fire out of me. So, onto what this was supposed to be about ...what I *feel* like lupuswise right now.

When I was a freshman in high school, a woman moved to our town. Lorrie Avalon. She later married and became Lorrie Sluder. She was an interpreter for the deaf. Several of us teenaged girls followed after her like little ducks ... where Lorrie was, we could be found, copying her every move. She was our hero! She was very patient with us, and took the time to teach us sign language. She taught us the very intricate nuances of interpreting, signing to worship songs and communicating in sign. She also taught us the special things we needed to know to understand 'deaf culture'. By the time I left Colorado, I was, an interpreter for the deaf.

I met a girl here, Marcy, who had learned sign at the same place Lorrie had, and Marcy and I signed together in a choir, Proclamation. We started a sign ministry at Grace fellowship, including interpreting for the deaf.

Signing was a huge part of my participation in worship ministries. Singing was definitely there, but signing was probably ..no, it WAS my first love.

Signing ... was my first love period. Over anything.

When I finally decided to go to college at 22, I majored in deaf education.

When I got sick with myashtenia gravis when Samuel was born, I begame too weak to sign. When I finally got diagnosed, the medications gave me enough strength to sign to music, at least enough for my own love of signing.

By the time I started at Southpark 10 years ago, the meds had helped enough for me to be able to sign for special music now and then. (About once a month)

During this time, I was, because of many symptoms ... I was tested repeatidly for lupus, the ANA kept coming back normal.

About 4 years ago, my arms and hands started to really bother me. Hot joints. Swollen ... and the fear of Rheumatoid Arthritis came up. So, they tested. Long story short ... they found the Anti Double stranded DNA and it was sky high .... no RA ... but the lupus they'd suspected since the beginning of the suspecting of MG.

My relief, was palpable ... my hands would be ok. My hands were my dreams, my hands were my life. My hands .... were my means of worship! To have RA meant to have malformation and crippling that would effect the ability to sign.

I was sent to a rheumatologist and as I expressed my relief in it being lupus not RA he sadly looked at me and said "in a small percentage, lupus *can* malform joints, don't count your chickens before they hatch"

Fast forward to today ...and ... my hands look like that of an RA patient. The joints are buldging, and the fingers are turning to the outward angle and my fingernails don't face to the top when I hold my hands flat. Frustrating to the least.

Signing ... is out of the question. I can no longer make the signs do what they are supposed to do. They just don't work right! Add to that the tremors that I have, and well ... nothing works right.

Discouraged doesn't even start to discribe it.

Today, my joints are swollen ...even my elbows, my breast bone and my feet are swollen and hot. I'm dizzy ... and my shoulders and hips ache. Pleurisy is a major issue today. I can't get in a deep breath. I'm wondering if I've got another case of pericarditis going, because it's soooooo much worse on the left side than the right. Not curious enough to go to the doctor though. I'll up the celebrex for a day or two ...

It's weird to have a swollen breast bone ... it's something most people would never even think about. But, it happens. At least, to lupus patients ... it's called Costochondritis. It's painful and add that with pleurisy and it makes breathing a rather painful experience. Moving, not much better.

The vertigo ... you wonder ... if I was breathing better ... would I be dizzy ....but then you go lay down ....and the world still spins and you know ... it's true vertigo ... and you realize you're in a true lupus flare.

And there isn't a dang thing anyone can do about it ... you can just wait it out ... because you're meds are topped out...

And you wonder

what did I do to bring this on?
Did I over do it?
Am I getting sick?
Was I exposed to something?
Is it the weather? (Most likely culprit this time ... we had cold weather, it suddenly got VERY WARM this weekend ... 70's ... and then will be snowing tomorrow)

What brought this on this time and what can I do, if anything to prevent it next time?


Here we go lupdieloo ... all on a saturday night ....