Been browsing the net since I'm too sick to get out of bed...enjoy these :)

http://www.smashingmagazine.com/2008/04/28/really-stunning-pictures-and-photos/

My aunt Evelyn was sent to the hospital and then to an assisted living facility...I don't have any more info :(

Sometimes I get tired and forget his legacy, forget what we've all been through...and I also forget how important it is that SOMEHOW McCain be defeated (and I run into his supporters more and more these days) because he wants to continue the Bush Disaster and we can't take it any more.

The passionate voices seem to be usually on the radical right; I assume this is because wealthy media owners support the right wing because they think anyone else might raise their taxes and that's all a lot of people care about..

One thing that makes Obama so refreshing is that he speaks well while saying things that are actually sane.

But here a special commentary on MSNBC lets us listen to someone else who knows and is not afraid to speak against what has really been going on in the Bush years. Thank you, Keith Olbermann.

I could feel my eyes open wide and I took in a huge breath when I listened to the below. This is important to hear. Thanks to msgeek for sharing it on LJ, where I saw it.

Part 1: http://www.youtube.com/watch?v=zvNn1raVikw
Part 2: http://www.youtube.com/watch?v=fcNAt6mfRFA

please remember that I collect postcards :)

Ok, begging can be annoying, but this is just an FYI ;)

I did sleep and a lot of the painful fibromyaglia symptoms are much better. Fibro patients really need good sleep every night.

This completely rules out my living on the street or in my car, so I really wonder just when it will be noticed by somebody who cares that disability payments are now no longer enough for food, clothing, shelter, and medical copays and OTC-but-doc-says-to-take stuff. Never mind transportation or any hope of not getting depressed due to dire poverty. The Libertarians would just let me did and so would the Republicans which is why it looks like I am just stuck with the Dems.

Anyway, I did have nasty killer joint pain and a migraine starting when I woke, and also severe dangerous suicidal depression. I wrote some emails in this state that I might not be forgiven for.

When I took my pain med and it started to work, the depression improved somewhat as the pain became controlled.

However, I still had severe muscle weakness and fatigue. I was a bit scared about driving the 75 miles to my thyroid doc today. I kept the appt. because he is a really nice doc that works in a clinic where they have a terrible time with rescheduling.

On the way there, I became very tired and then had a cluster of really weird symptoms. My eyes seemed to be having muscle spasms and it was very hard to see the road. I had spasms in my arms and legs and back. Unfortunately, also my bladder, and I soaked my clothing. So humiliating.

Once I got there I had to take off my dripping pants and undies but my top was not long enough to completely cover me. I walked in pulling the top down and stretching the fabric but I was too weak to continue this indefinitely. I explained the situation and asked if I could please wait inside the door where the patient rooms are rather than out onstage in the huge lobby. Believe it or not, I had to WAIT to get PERMISSION for this. I wanted to die right there.

Once I got in the nurse there was helpful.I ended up taking my top off and wearing two hospital gowns (one for the front and one for the back)! My thyroid news is good; I seem to be stable. I do need an MRI to check my pituitary tumor again (routine) and to check out my symptoms from a recent head injury. Mom found the $300 copay for the last one to be a hardship so I'm not sure what to do. I'll have to solve this one when I'm feeling better; not now.

I was still really weak and tired but since all the spasms went away to wherever it is they hang out, I did pick up Don and we came home. It is finally fresh strawberry season and we got some. I've had no food and am having trouble getting out of bed so I think I need to ask for some food.

Mom called; she is so worried about me driving to and from LA tomorrow. I know I shouldn't do it. It's a hard drive even when I'm well. Someone her age who is afraid of traffic shouldn't be the one volunteering to take me. I really do need more friends. But when I got up from the bed I had to sit right back down again. I have been thinking really weird lupus flare all along but now I got some news from mom: little Gracie has fifth disease. I'm immunosuppressed and spent the weekend playing with her. The early symptoms are low grade fever, headache, mild stuffy nose. I have all three. If I have it these symptoms will go away and then I will get a red rash on my face. How I will tell it from the regular lupus rash I am not sure! Wish I felt well enough to look on the net for fifth disease pix but I keep falling asleep; I am exhausted.

So if my lupus blood work is fine maybe I've had effexor withdrawal and the early stages of fifth disease?

Whatever it is, I want to go to bed and sleep, sleep, sleep now that I can do so thanks to Ambien. I am so tired just making myself drink some water seems like a lot of work.

I'm going to have to take poor Mom up on her offer. Don and I will take a pricey cab to the bus at 6 am; it leaves at 6:30 and arrives in Goleta 8-ish. I'll wait at the cafe next to the office where Don works. Mom will pick me up there. She will arrange to stay with a friend in north county tomorrow night so that once she drives me home she doesn't have to go all the way back. Now I won't have to risk crashing the car if I just pass out.

You can see why Mother's Day is a big deal for me. I don't know what I will do when someday she passes on; I pray she will live to at least 110 years...! Our family isn't that long-lived so I really need a miracle here.

Depression is whispering in my ear that I don't have many friends because so many ppl in the Santa Barbara area (some former coworkers, health professionals, friends from childhood) have all shunned me and I will never make a lot of friends there.

I am telling Depression to STFU. I don't have the energy for abject misery. I just want rest and peace and hope that someday I will value, be valued (and also feel valued) by many people.

Mom, I love you.

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.

http://www.youtube.com/watch?v=pCdM1FMhKd0

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.