Beep's Purple Blog

 





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 I didn't go to Santa Barbara for the celebration, but hope those who were there or at other places where it is celebrated had a great time :)

 To all the fathers out there !

 There will be a lot of celebrants of this holiday here on the central coast tonight.  Except for us flu victims :)

 Although I don't have people photos in this public post :)

 Well, that's what this says !

 but sometimes they knock me for a loop.

I get sick from UV exposure, as many of you know, so I love rainy and cloudy days.  I also think that many of us southern and central Californians celebrate these days because they are rare here.  In fact I wonder if this will be the last time I see clouds until next December or January; it is possible!  No wonder we get to missing the rain since our rainless summers can be so long.

But I also react to changes in barometric pressure.  So sometimes I end up sleeping through the very days I should most be able to enjoy going outside, and that's what happened today.  When this happens I become exhausted, have joint pains, and often fall asleep without planning to do so.

Now that I've got diabetes as well as lupus I don't know what role they play together in making me feel tired.  Guess I need to learn that.  I'd rather learn a foreign language or how to make soup, but my body chooses for me once again.

Today I know I woke up very late, took my blood sugar reading which was quite high for the first one in the day, and then I fell asleep again.  I woke up later with the blood test kit still unpacked in my bed and the uncapped needle stick right underneath me.  Glad I didn't stab myself with it in my sleep.  Anyway that's how dramatic this exhaustion can get.  

dburr  walked to the nearby Subway to get us dinner.  I don't like him to walk outside here at night for safety reasons but he didn't think I was up to driving and he was probably right.

And then I must have fallen asleep again!  and woke up at 1:30 am.  Now I get to put a few things together in a bag for Easter weekend since I am going tomorrow!  Crazy schedule.  Why I Cannot Work Office Hours Any More, Reason Number 1406.  Lupus can be such a total pill.

Anyway, I will get to see my family for Easter, even if I have to enlist the aid of iced coffee to stay awake.  But although dburr was invited he has to stay home.  I feel badly just leaving him here on Easter since his local friends all moved away  after the place where they all worked together dramatically downsized.  But he has a contract work project due Monday that he needs the time for.  I asked him if I could bring anything back on Sunday.  Answer: food.  He just helped me pack, too.  I'd better bring back something good!

 Wishing all who observe it a very meaningful Holy Week .

I feel very strange not going to church for Good Friday, but I haven't really found a church that feels comfortable to me where I live now.  Fortunately there should be some time tomorrow for prayer and meditation.

I am lucky enough to be invited to an 80th birthday on Saturday, and to my sister's house for Easter! :)

What are your plans?

And Happy Pesach to my Jewish friends.  I had no one nearby who could invite me for seder; hope you ate extra for me ;)

Wow, and for my woo-woo friends, it's a full moon!    In Libra, so those so inclined can tell my fortune ;)

Hopefully everyone can celebrate something!

 I confess I did not go to church.  I wanted to, but the weather changed drastically (and the forecasters were WRONG.) Now it is dry hot winds and so my allergies went insane.  

There are reasons why I should not take antihistamines if I don't absolutely have to, so I tried to get by for awhile, but when I really couldn't breathe well and was getting Need Oxygen Now headaches I gave in.  Achoo.  

It's ok; I'm grateful I can go out at all now.  April used to mean being so sick (in childhood) that I was irritable and miserable every Easter.  Allergies, undiagnosed asthma, undiagnosed lupus...and since I'm OLD the new treatments that we kind of take for granted now just were not there.

I will be ready for Easter even if it does have to be Better Living Through Chemistry.  I just hope I have time to find a cute Easter icon for my LJ !  

 


As you all know, thanks to some recent unplanned medical expenses, a problem with SSDI cost-of-living increase and Medicare Part D income limits for avoiding a huge gap in coverage, the Governor of California making a stealth budget cut which stopped paying my monthly medicare premiums, and the economic woes bringing layoff notices to a lot of the people who would otherwise help me to survive...I've been desperate for money.

I think, though, that I've finally found a solution.  A few members of my Italian family said they could get me a job back in good old "Lost Wages," even with my health problems.  Guido in particular was very helpful and offered to hook me up with a buddy who owns a club and who needs more table dancers.  This is a pretty easy job; only a few hours per night, and I could sleep all day.  For some reason, the pay at Guido's friend's place is unusually good, and of course there is a fortune to be made in tips.

G. said the most important thing his paisano needs of his employees is "keep ya eyes shut an' ya ears closed."   Well, I'm so sick half the time, I don't notice much that goes on around me, and with lupus cognitive impairment I'm sure that if I saw something I wasn't supposed to see, I would probably forget it right away anyway.

I did tell the boys about my problem with working putting me over the Medicare Part D "special help" income limit which I am dangerously close to (and may exceed next year anyway, to my doom)...but.  To my total surprise!  They all assured me they could "fix" that somehow, and they seemed very sincere and confident about this!  Swoon...  Sometimes it is nice to feel strong men are taking care of me...



My concerns right now are:  

should I dye my hair back to the red color I was born with?  Would that help me stand out more (more tips you know!)  And what color looks best under hot lights??? I don't think I can go blonde; the bleach would tear my fine hair apart and turn it orange... decisions, decisions...



Also,  since I haven't been able to spend much time in the sun since c. 1985 when I learned UV exposure was killing me, I've got this ghostly skin pallor thing going on.  Would I look better with sunless tan?  Some of those products are said to work really well these days; I saw one on a late-night infomercial which was AMAZING!!!  Since naturally I will be dancing in the nude, this is an important consideration.

We can wear shoes, though, so my feet will not get cold from the A/C and sport the usual Raynaud's.  We have a nice choice, too!  Hot pink or red spike heels...or glittery ones in any color!

 It's not really a holiday for me; I have to go to the oral surgeon and the dentist, but maybe I could pinch someone along the way...

 If you don't have a sweetie, hug a family member or a friend :)

 Guess it's not supposed to be such a happy one for me.  I'm told that a Year of the Tiger woman such as myself is supposed to have a rough two years ahead.

Well...pffft.  As if the last year was full of fun.  2009 is going to have to suck pretty extremely to even begin to compete with the erosion of what I thought was my life that took place in 2008.  If it meant something to me, 2008 probably stressed it, bent it, broke it, or nuked it.  Sorry, amateurs; the pros showed up before you and burnt the place to the ground.  Have some sand.

So I wouldn't plan my life by these little forecasts, but I am making them available in case you want to use them to tease your friends :)

It's past 3 in the morning and only in the last 1/2 hour have I felt well enough to type.  It's nice that my joint pains sometimes go away after I've been awake for awhile, but when the "awhile" takes so long, I'm not sure how much good it does me.  It's way past time to go to sleep!  And I am for sure tired.

Weather changes, which trigger those pains and other things, continue.  We did have some rain in the past few days, though...and we were unnaturally, pitifully excited about it here in the New Sahara.  

But it was summer a couple of weeks ago and spring the week after and autumn in there somewhere and winter today.  Tomorrow, who knows.  And I'm not sure exactly when the lunar new year starts/started.  Have a happy one anyway :)

 I try to get the Christmas decorations put away today, but I never thought it was unlucky to leave them up longer.

 Very very thick fog in places...the kind where you don't know if someone is anywhere around you, or not.  And the drivers at 2:00 am + on what is now technically New Year's Day are just so special.

But I am happy to be safe at home now.  And grateful.


Happy New Year, everyone !

I am going to spend my New Year's Day on: laundry! :)

(I need clean clothes! Now! I really don't have "a thing to wear" !)

I am very very very tired.  More tired than I even should be.  I don't have this blood sugar thing quite under control yet.  I know I need a blood sugar monitoring kit...and I also know that even though they sell them in the drugstore, I don't have the $$$.  Thank you, unknown wallet thief.  I wouldn't want YOUR karma!

I have to say I know of very few people personally who really enjoyed themselves tonight.  A lot of crises.  Very odd energy. 

Tomorrow I am going to meditate, prayer, do laundry, and be here for anyone who needs or wants me, because I saw and also sensed friends tonight in a lot of pain.

I'm not in pain; I'm just ill, and that's not the same thing.  I don't think I quite have my own brain back from whatever hyperglycemia is doing to it, but I'm working on it.

And I avoided every single dessert successfully; I can go to bed sickeningly proud of myself! :)

Ok, you wormy rotted curse of a year, you've got 7 hours and 22 minutes.  And that is ALL you've got.

Today I learned I was the victim of a crime.  All of my food money for the next 3 weeks has been stolen. 

I know now why I can't just fast to save money and why I got so horribly sick the last time I tried it (diabetes), so this is a quandary.  Everyone I know is tapped out.  I wasn't going to keep living on the credit card.  Oh well.  I confess I no longer have a clue what to do about my financial situation, which only seems to worsen daily.  And I don't know who stole it, and this is hurting me.

I could not find my dress shoes!  I only have one pair of flat black dress shoes.  The ones I bought on sale this summer were accidentally left behind by dburr, along with my best black sun hat, when we were up north for a lupus foundation workshop.  Well, he doesn't see well, and black is hard to see.  I bought a new pair on credit; mom was going to give me the money for them for Christmas, but she is drowning in my dental bills.

It was unseasonably hot out so I put on flip flops.  I brought my dress shoes with heels that I'm not supposed to wear any more just in case I go into total spontaneous remission between now and the party I'm going to (heck, ya never know) and I brought my Ugg boots in case it gets cold and I can cling to the Santa Barbara tradition of wearing Ugg boots everywhere.

I was most of the way to SB when I realized I hadn't paid the PO box fee for the lupus group mailbox (I will be reimbursed in January for that) and it was due today...can't lose the mailbox, had to go all the way back, so I arrived in SB too late to get the printout of my tests I needed from a doc's office who tried to fax them to me for two days but I don't know what wrong setting our fax machine is on and the resident techie hasn't been able to get to it yet and so I just threw my hands up in the air on that one.

I don't feel well physically, in about 25 different ways, but what's new.

I had Murphy's Law getting out of the house.  My keychain broke; snagged the top I was wearing, which was too hot anyway.  Looked for another top; couldn't find half of it, so went to a third that I just brought WITH me and wore my sparkly Christmas t-shirt in the hot car.  Grabbed the wrong eyeshadow and put it on; so now hoping for dim light.  Thought my hide-the-lupus-rash powder was in the car.  It isn't.  Oh, but the gear shift is still sticking.  I wonder what it will cost on Friday. 

I feel lonely, and a bit unwanted.  I always think I'm a close and trusted person in people's lives and then I find out their major life events via public info or third parties.  This happened recently with a family member, even.  When will I learn?  I am so gullible sometimes.
I think my mostly Capricorn ancestors have turned me into the kind of shadowy girl who sits at home pining or cleaning or balancing the books while others have the flirting, the parties, the dancing, the fun.  Time to turn off the psychic switch, there.  Go away, old fogies, you've done me no good.  I have swept my last fireplace while my stepsisters go out in the carriage to the ball.

I'm sure I will lose a tooth or half of my hair will fall out or someone will crash into my car or I'll be heartbroken or backbroken or just plain too sick to want to live sometime between now and midnight, but I assure you, ghost of 2008, at midnight I am going to be an entirely different person.  The kind of person who walks away from bad treatment and puts on her dancing shoes and finds the party.

I missed all the years that people had their fun, you know, to the point where I sometimes burst into tears when people ask me if I remember the name of a song or the name of an artist or a movie or whatever because I wasn't *there*.  I was struggling for survival the entire time, physically, financially, emotionally.  For *decades*.  I know what Hell is and I've been there numerous times.  I've been through things I *never* talk about because I know nobody wants to know about anything that bad.

I'm not sure what I survived it all for but it isn't to be Fate's little dartboard.

I probably won't get a kiss at midnight, even a virtual one...it's all the young ones around me who will get the romantic text messages.  But that's ok.  Maybe that can be a New Year's resolution:  next year, I will have a kiss at midnight.  This year I just need the toe of my boot to work.  At midnight, I am going to turn into a different person, and kick 2008 out the door.

Bye bye baby!  *smooch*  *kick*  Vaya con Dios.

Old year begone!

 I'm still behind in responding to people, here and in email and even by phone, and that is because I keep falling asleep when I have not planned to do so...I am very tired, all the time, right now.  I could not understand why I kept being told my lupus was ok when this sleep thing started happening; I didn't think I might have picked up another chronic illness!  Surprise!  Oh well :)  When the diabetes is under control I should be less exhausted.  Unfortunately my endocrinologist is away and his office thinks the end of April is a good time to schedule me.  I will ask to speak to him when he gets back.  Anyway, if I'm late getting to you...here is a happy new year greeting from me that is on time ;)  For all the 2.5 people who read this blog!

I had two wonderful things happen in 2008:  getting a new car from my sister, and seeing my country decide finally to take a break from electing Reaganomics advocates for President (Reaganomics have not done us a lot of good IMHO...and now the proverbial chickens are coming home to roost...)

However, this is one of the hardest years I've had on record.  Just having six people I knew pass away was enough to make this a year to forget, but also it has been a financial misery and has threatened my health care access seriously and has given me a new illness to cope with and I even had some problems with several people taking unexplained, passionate dislikes to me.  Others treated me unkindly where they had always been kind to me before, and they were still very kind--to other people.

Some of the people close to me have also had a very rough year.  Serious marital and legal problems.  Layoffs.  Losing a significant portion of their assets in real estate or stock market.  Company they work for being acquired by another.  Job threatened for other reasons.  And, worst of all,  at least two people have lost family members they loved dearly.

Goodbye, 2008, it is past time for you to go.

Happy 2009, everyone!

love,
Pam 

:)

 Ok, I am getting excited now :)  I am one of those Christmas fanatics.  I start counting down the days till Christmas every December 26!

My niece made me laugh.  She was far too busy to come to the phone and talk to me, and in fact wished for Grandma to stop talking to Auntie Pam so that playtime could resume, but she had me told that what she wants for Christmas is contraband in the form of candy.

I managed to get some pictures into some frames.  I keep telling myself the excellent is the enemy of the good, and it is better to have something ok to put in gift bags now rather than what I had envisioned to be completed after I sort out what is up with the computer and get a new photo printer (with fairy dust money or something like that?).

I got 68 pages of genealogy entered and that will have to do.

Wish my hair would dry because I need to make a quick trip to the store to see what TINY boxes of candy might be available ;)  Niece has two cavities so she can't gorge on the chocolate mountain of her dreams.  Yes, it's tough to be age three ;)

I got good feedback on our holiday party from this past Saturday; that makes me happy...and relieved.

I had one tricky Christmas card left to write (people I have never met but who are family are always hard) but I think I finally know what to say.

And....

I was sent flowers!  A Christmas bouquet with red roses and white carnations and red candles!  I love getting flowers!  Thank you so much, Mystery Person! :)

Lastly, I am boycotting all news about the rotten economy from now till Dec. 26.  I know it's rotten; I don't have to check in every hour with it.

My family is paying for two hotel room nights and I am so grateful I don't have to do the long drive early on Christmas morning and back home late Christmas night like I would have without any accommodations...they only have floor space at the house, and my body just isn't doing camping out on the floor right now!   So I'll be in Thousand Oaks on Friday if anyone else is down there and wants to get together.

I shall have a very merry 1930 Christmas! :)

I hope everyone reading this has a wonderful next few days, regardless of your religious or cultural background.  A hug and a kiss from me!  if you will let me give them to you ;)

I am so sorry but  I'm not returning most phone calls or emails yet.  And I've been a bit irritable when some phone calls have gone on for very long and I'm being told a lot of trivial things, which is not my normal way as I tend to be interested in anything anyone has to say, but sometimes if I'm in a lot of pain and/or in a hurry to get something done...well...sigh.  

I've been running out to the Target store, explanation below, and I know I'm not giving the folks who enjoy people watching and appearance-critiquing any sight for sore eyes, as I look terrible.  I'm pretty much a blot on the landscape in general thanks to what years of prednisone hath wrought, but today I've added the additionals of my  hair needing to be washed (it has to be washed every day and air dried if possible, which means I have to do it when I'm not going to be outside if the weather is cold like today) and combed out, the top I'm wearing not nearly long enough to go with the waist of the capri slacks, no makeup or jewelry or perfume or even a coat, scruffy slip-on shoes; I'm sorry.

I knew I would be doing my Christmas gifts down to the wire months ago, and I don't know how I knew.  That knowing what will come to pass thing happens to me a lot.  Sometimes I answer the phone before it rings, and dream of things that then actually happen.  I am more than willing to admit there could be very logical explanations for these things.  I'm not trying to prove any kind of paranormal claim.  It's just something that occurs in my life so I'm used to it even if people around me sometimes are not.

I didn't know what would mess up my plans to put some photos together for my family in lieu of other Christmas gifts.  My sister in particular enjoys photos and she has helped me so much this year, first with the car and now as one of the people helping me not be homeless for Christmas, so I wanted to put together something meaningful for her.  I've done it before and not run into any difficulties.  I don't know how I knew this time it would be roadblocked in so many ways,  but my long-suffering housemate will tell you that for weeks now I have been saying "I can't do that until after Christmas; I'm sorry, but if I do that my Christmas gifts might not get done in time."  I could run around screaming I TOLD YOU SO now to a lot of people, but I always have opportunities to do that, and usually pass on them...no one really likes to hear it and I have problems with social acceptance as it is.

Anyway.  The laptop and I have lupus.  Yes, there are other computers in the house, but this is the only one to which I have access that is powerful enough to do all of the things I wanted done for Christmas.  The others I can use cannot run several of the programs I need now.

Recently as some of you know the computer was overheating badly enough to be shut down, and time was wasted with me being told stupid things like my desktop wasn't neat enough (it's pretty stark btw! I think I just ran into someone with OCD at the computer store!) but finally it got a new logic board.  However.  The fan was noisy, and then it sputtered, and then it died.  I had to wait for the right kind of appointment and for the right part to then come in after an unsuccessful attempt on the store's part to install the wrong part.

New fan in at last.  Tests were run.  Battery problem found.  New battery.  Ok.  Now all tests passed.  Computer home with me and should work fine.

But while it had no fan, maybe it overheated and damaged the new logic board?  Maybe all the overheating damaged some other things? The reason I don't have a PC any more is that the power supply died and took everything with it; I started replacing things but finally gave up as it seemed impossible to replace *everything*.  Overheating is bad juju.  This is why paid techs should not tell you it is in your imagination or has anything to do with desktop arrangement or the weather on Borneo or whatever.

All I know is that it is crashing a lot when I use iPhoto, I can't open Photoshop, and Aperture runs very very slowly.  None of this is normal for it.

dburr  says he might have to reinstall Photoshop.  Fine.  But the store installed iPhoto.  In any case, whatever the cause(s), I can only do minimal picture editing between the crashes.  

In addition, it turns out my photo printer is dead.  So now I'm printing at Target.  Costco photos are better but their hours are shorter and crowds are bigger.  But Target closed early Sunday night.  I had to wait until this morning to get my photos.  Then I learned they had chopped everyone's heads off in doing the printing, for some reason. I had to re-upload, which I should not have had to do, and then get them printed.  So I have them...now.   I didn't get my refund (yet; I'm not done there) for the headless ones.  There isn't going to be any way to edit anything so the few good ones will go into the gift albums and the rest will be thrown at some poor Target manager after Christmas...or will rot in my drawer if I decide not to even bother to try to get refunded.

I still have so much data entry to do on the genealogy report I was going to give to my sister.  I don't know if that program would run on one of the other computers, and if so, I don't know how to extract the current data from it.  That was a bizarre thing because the program that would have required no data entry was perfect for me to make stuff for my sister who has a PC, except that my PC died and guess what; the makers of the program stopped supporting Mac.  So now I have a Mac program i have to enter everything into by hand and then I guess sis gets PDFs which are supposed to be compatible with everyone...if it works when I try it.

As an aside, I was hoping to do all my work on the laptop anyway, since I seem to need to lie down.  Yesterday it was a terrible migraine.  Today I am having trouble breathing, but doc says my asthma is fine.  I have so much joint pain I had trouble dressing myself (hence the crazy outfit and messy hair) but my lupus lab tests are fine.  Well, the computer passed its diagnostic tests, too.  Just as I did in all the years I was desperately trying to find out from doctors why I was so sick all the time.  Guess what I think about over-reliance on diagnostic tests?  Am I the only one old enough for the Bronx cheer?  Few things piss me off more than this.  

I AM sick and SO IS THIS COMPUTER.


I am naturally totally behind in life stuff.  I need to do laundry before going to family on Wednesday.  Lots of laundry.  I need to pay late bills.  I need help opening some packages that came but dburr has been out all day.  I may need him to do the dishes, too.  

My joints are really cranky with weather changes, which is why I probably can't live in my spiritual home (New England) at this time in my life.  It's actually raining a bit here.  The cool air feels wonderful.  But it's not going to rain tomorrow and might the next day, or something like that, and my joints always have to let me know when the barometric pressure is changing.  I don't see why they never get the memo:  I can look it up on the web; I can buy a barometer; I don't need the ancient pain signal.  Stone knives and bear skins; give it up, already.

Wonder if my ancestors claimed to be psychics in hunter-gatherer societies?  (It's going to rain; I feel it in my bones (literally.))  They didn't know it was autoimmune.

There probably is a logical explanation for the little things I predict, too.

Ok, back to putting messed-up photos in whatever frames I have (no time to buy frames)  and trying to figure out how to write in an album that should be decorated with calligraphy and instead is going to have to be graced by my illegible arthritic scrawl.

I have a lot of fighting to do after Christmas.  Bills, insurance, health care advocacy, finding the source of a few medical problems, and now the computer.  Or, I could dump it all in the middle of the floor and run away.  Where do people run away to these days?  And how do they get there?  

When I get my family presents done, I will catch up in email first :)  The phone has so many telemarketers that it is no longer my primary means of communication.  I'm on the Do Not Call list, but just my bank and my local telephone company alone pester me so much with third-party crap that I need an answering machine to screen the calls 24/7.  

Oh and  today something I've never seen before flashed across the screen! "Hard drive error" something.  You know what?  That can't be good.  I have my own hard drive in there, so if it got damaged, I have to come up with $.  I wonder if this is going to be like the PC...in the end, I could need a new computer?

If I do end up needing a new Mac laptop to do all the things I have spent the year learning how to do on one, I really will have to win a lottery ticket.  I know someone who won a few thousand dollars TWICE.  Interesting how some people are generally luckier than others.  Never understood that one.

The race is on...will I have Christmas presents done by Christmas?  The lucky people will know which way to bet; ask them for the answer.  In Las Vegas, where I can't believe I come from but I really do--they bet on anything!  Check the odds.  And stand on 17.