Finally, I have a pain medication script (vicodin wasn't touching the current bout of migraine + pain in every joint + pleuritis + costochondritis--nothing life-threatening, except for suicide or homicide being possibilities because this pain was OVER MY THRESHOLD). I took a pill. I still hurt badly, but so much LESS than before. I will be able to drive myself home after all.

I was supposed to see my primary care this am, but after waiting for 1 1/2 hours in silent agony, I had no more time left to wait, as I had to get a blood test by 11:30 for my thyroid doc to be able to see at my appt. tomorrow.

I was in a state of emergency and called a rheumatologist friend, but he told me to go take a nap. I only wish I could sleep for a few solid hours in a row, but with an invisible sledgehammer pounding at my head after breaking all of my bones, and something setting my lungs and chest on fire, uninterrupted sleep hasn't been an option for days now.

Neurologist gave me Ambien, too! I might sleep thru the night and at least put the major fibromyalgia flare back in the box! There is a God!

I don''t usually actually complain about having lupus; I share symptoms and info with those interested but that's it. But lately I've been learning that some people think I LIKE having it. Oh, riiiiiiiiiiight. I just love what it did to my career path, my financial status, my life span, my quality of life, and also the damage the meds have done from side effects to my body and to my appearance. Being a fat unmarried female in the US is just SO much fun. Surely everyone would want it.

And the idiots who think there is a motive to fake illness to get disability checks have not tried to live on what those checks pay and have an expensive illness, too. It's, um, impossible, so you either die or have to find someone to help you, even while your brain isn't working right, you are in so much pain you might blow up a building, and you look like some kind of horrific bloated alien.

I hate lupus. If it were a person I would put my hands around its neck and tighten them as hard as I could until the lupus was dead, dead, dead. HATE. That is what I feel about it. I just don't see any need to dwell on that, as lupus doesn't really care what I feel about it and why should anyone else have to hear it.

Now remember, sometimes lupus flares bring major depression, and I've got it now, so I'm officially on criticism overload. If you don't want to read my blog, don't read it. But sometimes I feel all the world is a critic and I've really had enough information about what I don't do perfectly to last several lifetimes. I'm tagging my entries; pick only the ones, if any, you like.

Ok. I stopped for a cold drink. I'm almost home. Not far to go now. I can do it.

Too bad I have to drive 150 miles tomorrow and 340 on Thursday.

Friday I rest. Come on, Friday.

My sis and her husband are getting me a nice hotel room so I can visit them and mom this weekend without a late-night driving marathon! I am really grateful!

The complication is that I am also attending a birthday party that I am looking forward to on Saturday in another city :) Ah, the life of the long-distance driving Californian...I really don't know what is going to happen to us. Everything is so spread out and designed for low gas prices!

Dburr is coming to the party too and then I am dropping him off at the house where his mom lived so he and his mom's bf can go to a special Mother's Day service together on Sunday.

Happy Mother's Day, a few days in advance!

Looking forward to celebrating with happypickle ASAP :)

(hugs!)

(((hugs))) venuspluto

Yes, things look bad, but that is no excuse to give up and not even try to make positive changes.

We can turn things around if we all work together.

What a strange day. I went to a megastore to buy a sun hat. I'd found the perfect one in Macy's last week; been searching years for this kind...plunked down the credit card as I couldn't afford it...and someone who was carrying it for me unavoidably lost it. That was weird enough, you would think, but Murphy of the famous law wasn't done with me! In the parking lot when I got out of the store, I had the familiar lupus-brain experience (I'm in a disease flare, post-viral thanks to the Death Flu, and my short-term memory is affected) of having to wander around since I did not remember where my car was parked. I couldn't get the new sun hat on (good old indestructible plastic tag holders) so I was getting more and more lupus as I walked. It seems I somehow crossed the path of a psycho woman with disheveled hair and only a few teeth who called out to me and said she would try to kill me with her old truck. What a merry chase we had. My arthritic knees are trying to out-do Mike Tyson's victims in a pain contest. It hurts to breathe deeply now (pleuritis) and if I could just give that psycho my migraine I fear I would do so.

Then I went to the post office to mail some salad dressing. After waiting in a long line I was unfortunate enough to get psycho old man clerk from hell. He asked if I had followed procedure for liquids (inside a plastic bag, surrounded with padding material, and finished off with an absorbent barrier of newspapers which I am allergic to and had to handle anyway). Yes, I had gone to the trouble and expense. But then he wanted to know--what was the flash point of the liquid I was sending? Naturally I had no f-ing idea. He wanted to SEE the product. I said ok I would unpack it in my car and bring it back in. Psycho said no. If I left I might try to send it without him knowing it and thus possibly be violating federal law. At this point I told him I had lupus, I left my cane in the car and could hardly stand, I can't afford to pay for new packing material and wanted to preserve it, I felt badly about holding up the other customers in line, and please give me back my package. The others in line perked up and nodded. He didn't want to give in and told me that the waiting people didn't matter! But finally I wore him down. I always keep my word so I unpacked the damn stuff and limped, with cane, back into the post office. He examined the offending liquid and was puzzled. Finally he asked a coworker who told him it was (of course) ok to send. Now I have to repack and go back tomorrow. If I am still able to walk. Sheesh!

My cell phone charger has also been lost and I can't afford to buy a new one. So I sit in my car when ppl call me since I have the car charger. Dburr knows where there is a spare in the house so that will be ok , but a known problem of this phone is the short battery life. I wish I were not so in debt or I would buy another battery asap. Hate to miss calls cos of dead battery but maybe it foreshadows peak oil or something and I should put it in a novel!

I'm resting tonight. God knows what would be waiting for me out there if I left the house again ;) Are my stars crossed or something?

I don't know how to properly eject a device. I just pull things out of the USB port...

help? :)

Happy Birthday, ValeRay (April 14) !
Happy Birthday, Bobby and Boni! (April 15) !
Happy Birthday, Mark B. (April 16) !
Happy Birthday, Bill K. (April 22)!
Happy Birthday, Scott V. (April 25) !

Well, the Death Flu was so nasty that I am not surprised it woke up my immune system, misdirected parts and all.

I really tried to stay off of the weight-gaining prednisone, endured a LOT of pain, etc. But when I saw I was bruising easily I got a blood test. My platelet count is going down, so it's time for a few days of the 'roids (glucocorticosteroids -- prednisone). I'm also so sick of this cough I'm taking the levaquin I brought with me. My rheum has been helping me out via email! Yay for technology! But so far all of my decisions have matched his. I guess we patients do soak up some knowledge over the decades...

I'm also anemic, again. Iron pills to the rescue.

The upside of things going south is that now I really have to treat, and so I will feel a lot better.

dburr  , do you realize you have put up with living with me for 14 years? :)

(yes people we know it's also Tax Day)

(I'm out of town right now but dburr was treated to a dburr-sized anniversary meal of his choice at the Olive Garden before I left, as well as a stop at Best Buy :) I would also wager there will be another request for a large meal when I get home)

I am slowly getting over the death flu. I really wasn't sure I would beat this sucker!
Bad cough still, but I may try another antibiotic.

I can put the draft of the will away now.

Of course you don't read my blog ;)

Looks like I'm not the only one coping with it, although since I've been on serious immunosuppressant meds it probably is hitting me harder than others. Just starting to recover from my 4th relapse. I am so weak I can hardly walk to the front door. I admit this is getting scary...although I don't blame contrails as some seem to...

Please, leave me, you damn bug.

http://blog.wired.com/wiredscience/2008/02/poll-is-a-parti.html

It really has got me thinking about my own mortality, and what I most want to do before I go, since it makes you feel like death is imminent.

Here it is, laid out for all to see:

http://www.nytimes.com/2008/04/04/opinion/04krugman.html?em&ex=1207627200&en=af82d2bcf30189b4&ei=5087%0A

Of course McCain is worse for health care, but I'd hoped to be able to have a real life before I die. As things are I'm already having trouble paying for my copays under Medicare Part D now that yet another tiny annual increase in my Social Security income priced me out of the most helpful level of "special help".

All the Repubs scared me this year...McCain, too. If I couldn't vote Dem I think I would write in someone.

From an email I received today, fyi:

10 things you should know about John McCain (but probably don't):

1. John McCain voted against establishing a national holiday in honor of Dr. Martin Luther King, Jr. Now he says his position has "evolved," yet he's continued to oppose key civil rights laws.1

2. According to Bloomberg News, McCain is more hawkish than Bush on Iraq, Russia and China. Conservative columnist Pat Buchanan says McCain "will make Cheney look like Gandhi."2

3. His reputation is built on his opposition to torture, but McCain voted against a bill to ban waterboarding, and then applauded President Bush for vetoing that ban.3

4. McCain opposes a woman's right to choose. He said, "I do not support Roe versus Wade. It should be overturned."4

5. The Children's Defense Fund rated McCain as the worst senator in Congress for children. He voted against the children's health care bill last year, then defended Bush's veto of the bill.5

6. He's one of the richest people in a Senate filled with millionaires. The Associated Press reports he and his wife own at least eight homes! Yet McCain says the solution to the housing crisis is for people facing foreclosure to get a "second job" and skip their vacations.6

7. Many of McCain's fellow Republican senators say he's too reckless to be commander in chief. One Republican senator said: "The thought of his being president sends a cold chill down my spine. He's erratic. He's hotheaded. He loses his temper and he worries me."7

8. McCain talks a lot about taking on special interests, but his campaign manager and top advisers are actually lobbyists. The government watchdog group Public Citizen says McCain has 59 lobbyists raising money for his campaign, more than any of the other presidential candidates.8

9. McCain has sought closer ties to the extreme religious right in recent years. The pastor McCain calls his "spiritual guide," Rod Parsley, believes America's founding mission is to destroy Islam, which he calls a "false religion." McCain sought the political support of right-wing preacher John Hagee, who believes Hurricane Katrina was God's punishment for gay rights and called the Catholic Church "the Antichrist" and a "false cult."9

10. He positions himself as pro-environment, but he scored a 0—yes, zero—from the League of Conservation Voters last year.10

John McCain is not who the Washington press corps make him out to be. Please help get the word out—forward this email to your personal network. And if you want us to keep you posted on MoveOn's work to get the truth out about John McCain, sign up here:


http://pol.moveon.org/mccaintruth/?id=12407-4087498-qW4z7z&t=232

Thank you for all you do.

–Eli, Justin, Noah, Laura, and the MoveOn.org Political Action Team
Saturday, April 5th, 2008

Sources:
1. "The Complicated History of John McCain and MLK Day," ABC News, April 3, 2008
http://blogs.abcnews.com/politicalpunch/2008/04/the-complicated.html

"McCain Facts," ColorOfChange.org, April 4, 2008
http://colorofchange.org/mccain_facts/

2. "McCain More Hawkish Than Bush on Russia, China, Iraq," Bloomberg News, March 12, 2008
http://www.bloomberg.com/apps/news?pid=20601103&sid=aF28rSCtk0ZM&refer=us

"Buchanan: John McCain 'Will Make Cheney Look Like Gandhi,'" ThinkProgress, February 6, 2008
http://thinkprogress.org/2008/02/06/buchanan-gandhi-mccain/

3. "McCain Sides With Bush On Torture Again, Supports Veto Of Anti-Waterboarding Bill," ThinkProgress, February 20, 2008
http://thinkprogress.org/2008/02/20/mccain-torture-veto/

4. "McCain says Roe v. Wade should be overturned," MSNBC, February 18, 2007
http://www.msnbc.msn.com/id/17222147/

5. "2007 Children's Defense Fund Action Council® Nonpartisan Congressional Scorecard," February 2008
http://www.childrensdefense.org/site/PageServer?pagename=act_learn_scorecard2007

"McCain: Bush right to veto kids health insurance expansion," CNN, October 3, 2007
http://www.cnn.com/2007/POLITICS/10/03/mccain.interview/

6. "Beer Executive Could Be Next First Lady," Associated Press, April 3, 2008
http://ap.google.com/article/ALeqM5h-S1sWHm0tchtdMP5LcLywg5ZtMgD8VQ86M80

"McCain Says Bank Bailout Should End `Systemic Risk,'" Bloomberg News, March 25, 2008
http://www.bloomberg.com/apps/news?pid=20601087&sid=aHMiDVYaXZFM&refer=home

7. "Will McCain's Temper Be a Liability?," Associated Press, February 16, 2008
http://abcnews.go.com/Politics/wireStory?id=4301022

"Famed McCain temper is tamed," Boston Globe, January 27, 2008
http://www.boston.com/news/nation/articles/2008/01/27/famed_mccain_temper_is_tamed/

8. "Black Claims McCain's Campaign Is Above Lobbyist Influence: 'I Don't Know What The Criticism Is,'" ThinkProgress, April 2, 2008
http://thinkprogress.org/2008/04/02/mccain-black-lobbyist/

"McCain's Lobbyist Friends Rally 'Round Their Man," ABC News, January 29, 2008
http://abcnews.go.com/Blotter/story?id=4210251

9. "McCain's Spiritual Guide: Destroy Islam," Mother Jones Magazine, March 12, 2008
http://www.motherjones.com/washington_dispatch/2008/03/john-mccain-rod-parsley-spiritual-guide.html

"Will McCain Specifically 'Repudiate' Hagee's Anti-Gay Comments?," ThinkProgress, March 12, 2008
http://thinkprogress.org/2008/03/12/mccain-hagee-anti-gay/

"McCain 'Very Honored' By Support Of Pastor Preaching 'End-Time Confrontation With Iran,'" ThinkProgress, February 28, 2008
http://thinkprogress.org/2008/02/28/hagee-mccain-endorsement/

10. "John McCain Gets a Zero Rating for His Environmental Record," Sierra Club, February 28, 2008
http://www.alternet.org/blogs/environment/77913/

Hi there.

I've been very sick. I have a virus that is going around my community. I call it Boomerang Flu. It has sore throat, headache, nasal congestion like a bad cold, severe cough, sometimes chills and fevers, severe body aches, some attacks of vertigo, severe fatigue, severe weakness, mild nausea and loss of appetite, and for me complete loss of my voice. Some people got meningitis; I haven't and I am grateful. But I've had three relapses.

I was so ill yesterday I could not take Don to work as I had promised. In fact he had to be here to care for me; there wasn't any way to reach anyone with no notice. I could not walk to the bathroom by myself. I probably should have called an ambulance but since I am immunosuppressed I am trying to avoid catching things in hospitals and there is no treatment for this virus other than supportive care.

Today I was out for about 3 hours for local errands and I couldn't finish them...I got too tired to hold my head up! I'm getting better but sloooowly just like the other three times and I really don't want this thing back AGAIN!

Where we are getting these bugs from hell I really do not know.

Anyway, news roundup:

I've been trying to reach my mom but she needs to learn email :) I don't have the voice power to talk on the phone. I did see her Wednesday and at that time my sister Patricia and her husband Bill were still in Kansas for the services for Marge, Bill's mom.

Don's mom passed away before she was able to sign what was needed to pay off the $6000 I am still stuck with on my credit card, mostly for Don's past emergency medical expenses and interest. Between that and probably needing a new car soon and now being hit by huge copays thanks to this year's tiny annual increase in my SSDI check that priced me out of the Aged, Blind and Disabled program...I see the problem, I just don't know what to do about it. Right now mom is helping with the copays and also my $4000 dental implant bill but she will be 75 years old this year and I really need a solution that does not depend on her. Ok universe, I'm putting this out there...

In other news, my friend Lillian and her boyfriend Mason have announced their engagement, and I could not be happier :) June wedding ahead!

I believe I may get to go to another wedding this year; is that right, cathalex ? :)

Life goes on...

Sometimes music helps me get my groove back.  What with the 3 am finally asleep and 5 am wakeup and that lovely cardboard taste food has today, my good old friend Major Depression is back on the attack and I *need* my groove back.

Anyway.  I was pretty small, but I remember when music sounded like this (and if the government was waging a horrible war, we knew about it, on tv):