Update on Me

August 22, 2004

Hi all… I just wanted everyone to know that I am still here… I’ve just become a lurker… I’m trying lots of new things to deal with being so sick all the time. Work at my office was so stressful I asked for and got transferred to another job with the same company. My boss was kind and has not given me a pay cut, even though my responsibilities have been greatly diminished. A co-worker asked me why I asked to transfer to the store where the job requires some lifting and standing and physical work, even though I have problems

with those things. I told her that I just could not stand being in the office one more day having people be nasty to me, or give me the silent treatment, or ignore me, or exclude me, or complain about my decisions.

They say what goes around comes around, but I don’t remember doing anything to deserve all this hassle! At the store I help customers who are happy to listen to my advice! They thank me for every tiny thing I do for them, rather than criticize! I get to make a difference in peoples lives and it makes me feel wonderful! But it seems like everywhere I go I find someone inconsiderate. My first day on the new job This girl complained to the corporate office that I didn’t take out the trash (it was 2 months ago and I was running late for an appointment, and it wasn’t all my trash anyway) but she made it seem like I had come in the first day and acted too good

to take out trash since I used to be a supervisor (I was a supervisor the day I didn’t take out the trash btw. I’m lucky it’s only 1 of the 4 people I work with! That’s a 75% improvement over the office. The girl who caused me so much trouble at the office put in her notice at the same time I got my transfer and now it looks to the “drama people” like she was fired and I was demoted. I keep saying “the people who count know the truth and the people who don’t believe the truth don’t count”.

Everyone knows how much I hate prednisone, but I finally let my rheumy & primary talk me into taking it. They said I could develop the same problems caused by the pred anyway, so I might as well take it and not be miserable. I guess they are right, but now I feel guilty about taking the stuff. Funny, I don’t feel bad (mostof the time) about taking the narcotics for the pain. But I’m so worried about the side effects. I’ve also been going to church more and trying to make friends but it’s hard, I must be very, very, boring. Nikki & I volunteered for the summer to work in the day-care and Sunday school. Today we had 14 toddlers from 12-23 months. I hurt my back lifting the little darlings. I don’t know how they deal with this on a regular basis the entire year. I’ve been crying off and on since I left church – pity party stuff – why can’t I do more? Why don’t people like me? I feel like the little retarded kid who runs around saying “I want to help” “Please include me” AND Why is doing laundry and dishes ALWAYS my responsibility even though I’m not the only one who eats or wears clothes? (yes, they help when I ask, but has anyone EVER asked me to do the dishes? Or cook dinner, or wash towels, or feed the animals, or pay the bills???? To deal with all this junk I have hired a psychologist to help sort out the crap I think in any given day. Most of the time it seems like psychologists are just people you have to pay to be your friend, and that thought is a depressing one L The closest thing I have to a friend is you guys. So if anyone out there needs or wants to be a friend with me I’m looking! I’m loyal, helpful, kind, etc, etc. Do they have personals ads for just friends? “Likes hammocks, beaches, fishing, reading, sappy movies, comedys, all of nature (minus biting insects), dreaming of better days, church, studying, personal growth

seminars, natural medicine, cooking and great food. Long distance friend ok.” At least I have you guys! All the advice often blurs in my mind but I just know that if I couldn’t come here and read about others who are feeling this crappy I’d probably just give up! I looked up and printed the paperwork for filing for disability. (that’s the motive behind the polls, in case you wanted to know). I got my pain management doc to write a prescription for a wheeled walker so I can get around and sit when I need to. The medical supply store is run by 2 RN’s one of whom has Lupus, They said they think they can get me an electric scooter for going on long trips like Busch Gardens, Camping, Festivals, etc, etc. When I asked my rheumy she just looked at me and said “Insurance won’t get you one of those, you have to be so disabled you can hardly move your hands.” I told her the med supply nurse said that was for the expensive $8000-10,000 elite wheelchairs. We were talking about your run-of-the-mill electric scooter for outings and long distance stuff. Sometimes I think she just doesn’t get it. I got the script, but clearly not her full support, as I think she believes I need to be more seriously crippled than I am to qualify. She also did a blood test for low vitamin D, seems there is an epidemic of vit-d deficiency in people who can’t get in the sun (lupies) and people who always use sunscreen. Anyone else get this test? What did it show?

Ok, this has been a long book. I hope I didn’t bore you all to sleep (unless you need the rest, of course.)

Have a great week – I’ll see you all soon!__________________________________________________

August 22, 2004

Debbie, Sounds to me like you at least got a job location that is 75% more pleasant than the old

one, and that is progress of a sort. As for your doc and getting support from her for things like

scooters, and such, you are right. She doesn't get it. But, healthy people, even doctors, seldom do

get it. They have no frame of reference for it. Now, if we taped their fingers until they were twice

their normal size, taped their knees, hips and shoulders until they were stiff and immovable, and then

added a supersized headache to it, then told them to "snap out of it", and "go back to work", they

might get a small idea of what our lives are like on a good day. I don't know how to make them feel

what a really bad day is like for us. It is indescribable, and cannot be reproduced outside the actual

disease itself. Even then, it presents so differently in each patient that it can take decades to get

a diagnosis and proper treatment.

I firmly believe, that someday, hopefully in my lifetime, they will find the trigger point in our bodies,

genetic makeup, or whatever, where this disease/condition/syndrome starts. Once they do, they

will go a long way to better understanding the way it works, and how to treat and possibly cure it.

In the meantime, it is up to us to keep educating everyone around us, including our medical care

givers, about all the aspects of this thing we call Lupus. For me, it means a combination of seven

conditions, side effects, and unexpected complications like this latest thing with the stomach ulcer

and discovery of congestive heart failure. We wouldn't have found the CHF except we were looking

for the source of my mid-body pain and anemia, and in the process found that my heart was enlarged

and not functioning properly. A blessing in disguise, I guess.

As for people who continue to deny our illness, fly in the face of reality, and in doing so make our

lives that much more difficult. Phooey on 'em. They are damned if they do and damned if they

don't. Sort of like being a liberal white guy who grows up middle class telling a group of African

American Ghetto dwellers how to live. They haven't got a clue, and never will have.

So, lady, what it boils down to is: Are you going to live your life to the fullest extent you can, and

damn the naysayers, or are you going to let them dictate to you how you feel about yourself and

your life? I tell such idiots that they need to get a clue, offer them $.10 for the quest and go on my

way. They aren't worth my time or tears. I think the best gift I ever gave myself was to join this

group. All of us working together literally saved me at a time when I was ready to give in to the

naysayers, and give up on life. Again, I say, Phooey. Or, as our dearly departed, , would have

said, "Pffffft!" LOL

Take heart, honey. We are here for you, and you know we understand. Loving hugs, Mm

August 23, 2004

Thanks for checking in Deb, Thought that you fell of the face of the earth. I have missed you, as I am sure that everyone else has too. Hang in there dear, and God Bless, love, aDebbie D wrote:

Hi all… I just wanted everyone to know that I am still here… I’ve just become a lurker… I’m trying lots of new things to deal with being so sick all the time. Work at my office was so stressful I asked for and got transferred to another job with the same company. My boss was kind and has not given me a pay cut, even though my responsibilities have been greatly diminished. A co-worker asked me why I asked to transfer to the store where the job requires some lifting and standing and physical work, even though I have problems

with those things. I told her that I just could not stand being in the office one more day having people be nasty to me, or give me the silent treatment, or ignore me, or exclude me, or complain about my decisions.

They say what goes around comes around, but I don’t remember doing anything to deserve all this hassle! At the store I help customers who are happy to listen to my advice! They thank me for every tiny thing I do for them, rather than criticize! I get to make a difference in peoples lives and it makes me feel wonderful! But it seems like everywhere I go I find someone inconsiderate. My first day on the new job This girl complained to the corporate office that I didn’t take out the trash (it was 2 months ago and I was running late for an appointment, and it wasn’t all my trash anyway) but she made it seem like I had come in the first day and acted too good

to take out trash since I used to be a supervisor (I was a supervisor the day I didn’t take out the trash btw. I’m lucky it’s only 1 of the 4 people I work with! That’s a 75% improvement over the office. The girl who caused me so much trouble at the office put in her notice at the same time I got my transfer and now it looks to the “drama people” like she was fired and I was demoted. I keep saying “the people who count know the truth and the people who don’t believe the truth don’t count”.

Everyone knows how much I hate prednisone, but I finally let my rheumy & primary talk me into taking it. They said I could develop the same problems caused by the pred anyway, so I might as well take it and not be miserable. I guess they are right, but now I feel guilty about taking the stuff. Funny, I don’t feel bad (mostof the time) about taking the narcotics for the pain. But I’m so worried about the side effects. I’ve also been going to church more and trying to make friends but it’s hard, I must be very, very, boring. Nikki & I volunteered for the summer to work in the day-care and Sunday school. Today we had 14 toddlers from 12-23 months. I hurt my back lifting the little darlings. I don’t know how they deal with this on a regular basis the entire year. I’ve been crying off and on since I left church – pity party stuff – why can’t I do more? Why don’t people like me? I feel like the little retarded kid who runs around saying “I want to help” “Please include me” AND Why is doing laundry and dishes ALWAYS my responsibility even though I’m not the only one who eats or wears clothes? (yes, they help when I ask, but has anyone EVER asked me to do the dishes? Or cook dinner, or wash towels, or feed the animals, or pay the bills???? To deal with all this junk I have hired a psychologist to help sort out the crap I think in any given day. Most of the time it seems like psychologists are just people you have to pay to be your friend, and that thought is a depressing one L The closest thing I have to a friend is you guys. So if anyone out there needs or wants to be a friend with me I’m looking! I’m loyal, helpful, kind, etc, etc. Do they have personals ads for just friends? “Likes hammocks, beaches, fishing, reading, sappy movies, comedys, all of nature (minus biting insects), dreaming of better days, church, studying, personal growth

seminars, natural medicine, cooking and great food. Long distance friend ok.” At least I have you guys! All the advice often blurs in my mind but I just know that if I couldn’t come here and read about others who are feeling this crappy I’d probably just give up! I looked up and printed the paperwork for filing for disability. (that’s the motive behind the polls, in case you wanted to know). I got my pain management doc to write a prescription for a wheeled walker so I can get around and sit when I need to. The medical supply store is run by 2 RN’s one of whom has Lupus, They said they think they can get me an electric scooter for going on long trips like Busch Gardens, Camping, Festivals, etc, etc. When I asked my rheumy she just looked at me and said “Insurance won’t get you one of those, you have to be so disabled you can hardly move your hands.” I told her the med supply nurse said that was for the expensive $8000-10,000 elite wheelchairs. We were talking about your run-of-the-mill electric scooter for outings and long distance stuff. Sometimes I think she just doesn’t get it. I got the script, but clearly not her full support, as I think she believes I need to be more seriously crippled than I am to qualify. She also did a blood test for low vitamin D, seems there is an epidemic of vit-d deficiency in people who can’t get in the sun (lupies) and people who always use sunscreen. Anyone else get this test? What did it show?

Ok, this has been a long book. I hope I didn’t bore you all to sleep (unless you need the rest, of course.)

Have a great week – I’ll see you all soon!

__________________________________________________

August 23, 2004