Beep's Purple Blog

 dburr  and I have been at Anime Expo 2009.  We had a great time and got to see friends we don't get to see often. It was a physical challenge for me as usual, but I got by with the help and the incredible patience of dburr and our friends.

We are on the train now, which will connect with an Amtrak bus.

I have to thank msgeek for getting us to the train on time.  She had to fight to get a disabled cart paged for us (we had waited over 1/2 hour and kept being told someone would come for us right away.)  I heard her telling some idiot that our train was IN and we needed a cart NOW.  She was right; in fact the train had to be held for us.  

Incidentally, although we don't live too far from Neverland, we ended up leaving the vicinity of where the Michael Jackson tribute will be just as it people are starting to line up.  AX was right across the street from the Staples Center!  I am glad we got out in time because massive crowds are way too difficult for me to navigate.

 So what am I coming down with now?  Ugh.  Bleh.  Sick.

 Some of it was probably anniversarial.  I often get depressed June 3 - 13; June 3 was my father's birthday and he died on June 13.  I was six years old so my memory is fuzzy but when I think of that time I feel sick to my stomach.  It was Father's Day right after the Friday on which he died, too.  Now that this year's Father's Day is almost over I know I lived through it all yet again.

I used to be able to take extra meds when I knew a time of recurring depression was coming up, but getting medication for anything these days is a huge hurdle sometimes, starting with how busy doc offices are and ending with insurance/pharmacy paperwork and price issues.

 My blood work has been good except for anemia but the lupus doesn't seem to care.  My days-old migraine is finally better but I seem to have swapped it for joint pains, pain with breathing, nausea, and total exhaustion.  I really do NOT feel like driving to SLO but dburr has a computer problem and that is the closest Apple store.   I've been trying all day to get out of bed and it's after 3:30 pm.  I had both some important things to do and some fun stuff planned for today and both had to be put on hold.  So irritating.

Well, time to abuse caffeine.

 I finally got a prescription for Maxalt, the migraine med which works for me.

However, my Medicare Part D plan refuses to cover it, and it's over $300, which on my income might as well be $3000.

So I'll be having a lot more headaches now that the docs aren't getting the samples of it that they used to.

You may set your Cranky Bitch Watch systems to ON.  Sigh.  Blinding pain...

 But lupus hit me hard.  I apologize to the people I've been trying to get back to.  I'm in a lot of pain and have trouble staying awake as well.  And I wouldn't trust my thinking processes today, if I were you !   

Hopefully after being totally knocked down like this I will feel better tomorrow after the unscheduled rest.

 I had so much I wanted to do today.  I think I'm finally ready to get out of bed, after many failed attempts, but it's almost 3 pm now.  This after 4 days in a row where I tried to get by without a day of rest in between.

I am fighting for the right to work, but for me it would have to be part-time work.  Which is why it would be harder to get my health care paid for.  Bleh.

 I've had two courses of Z pak.  First time I responded well (several months ago.)  Second time I did respond but this cough rebounded (a few weeks ago.)

I'm immunosuppressed.  I could have some infection that normal ppl can fight off.  I can't breathe well and I'm sick of it.  I'm wondering if I've got something that is already resistant to Z pak  (no, NOT the swine flu.  I'd be over that by now and I do not have the right symptoms.)

I hate antibiotics; they do a number on my digestive system.  Me actually ASKING for one is unusual.

Ok, tomorrow will be Unusual Day.  Some poor doc on call is going to hear from me, in between coughs.

I'd rather be swimming.  So very sick of being sick.

 I am better today than yesterday; unfortunately it is taking high-dose prednisone to get me there.

However, when I get out of bed, I become exhausted w/in a few minutes.  I wore myself out completely with all that coughing and all I really want to do is sleep.

There are some errands I must go out and do; it's 4:30 pm and I can't delay them any longer...but I know I need a lot of rest and I'm coming home as soon as I can to get it.  I will get better if I take all my meds and get that rest.  I've certainly had lung inflammation before.

The trick will be dealing with the steroids.  I have to go back on a low-calorie, low-sugar, low-salt, and NO criticism diet...

I also have to figure out how to do things by email and postal mail and fax that others would prefer I did by phone, since talking makes me start to cough again.  The only med which slows down the cough is a dose of two 5/500 vicodin pills.  Which means only after I'm done with driving the car for the day.

 Went to SB today!  It was good to get out!  But now I'm sick again!  Bleh!

For once and only once I'm glad of a heat wave.  Come on, solar energy.  Burn this virus up!  This host wants immediate eviction proceedings!

Right now it's morphed into something like a really bad cold (with body aches, headache, a bit of nausea, and the cough of doom.)  Better than cutting me off of all oxygen.

And yes, this misery is STILL preferable to a bad lupus flare, at least one of my lupus flares anyway.  I used to have to deal with people who would say "having lupus feels like having the flu."  Maybe for some.  Try having the flu with every single bone in your body broken, and needing eye drops every five seconds so your eyes don't sting you to death and needing something to keep your mouth moist so you don't choke and did I mention the hair falling out and the low-level case of Alzheimer's and the joy of wondering which vital organs are getting screwed up?  Flu.  Sheesh.

Anyway, I did get my second dental implant.  First time I've been able to chew on both sides of my mouth since sometime around the end of August...2007, I think.  My jaw joints have been damaged by inflammation and they really didn't like the lopsided chewing.  Maybe my teeth could take a moratorium on cracking vertically at the root for a little while...

Saw some cool cloud formations on the way home today.  Bug dburr  to send me the pictures he took; I was driving on the freeway.

Oh, and just when he has something important to do for some work we were praying he would get, he's relapsed, too.  He's got more of the low fever and dizzy spells and I seem to be in charge of respiratory drama.  I first noticed something was going wrong with me (again) April 18 and I think that's 17 days now.  They say flu can last 3 weeks.  At day 22 I plan to complain if this isn't gone!

 Back to bed after posting the link to this update :)

Thanks to all who care!  You mean a LOT to me.  I'm still not over always being the one in the hospital who doesn't get the flowers and the cards.  I always seem to have some absurdly popular roommate ;)  And the list of people who have dropped me for reason(s) that have their ultimate root in my health problems is sooooo long now....I won't think about that now.  I want at least ok dreams dammit.

Congratulations again to the scientists who discovered the most distant of recorded objects in the universe to date, a gamma-ray burst.


I am going to bed because not only do I have an out-of-town appointment with the endocrinologist in the morning, but my really scary cough which has something to do with asthma and lung inflammation is baaaaack.  Although I'm entirely too familiar with the horrid thing, and I know it is not contagious, people watching me gasp for breath think "swine flu" and get very nervous--and I do not want to be the cause of any stress-induced heart attacks!  so I may drop in at my pulmonologist's as well.

Where I NEED to be is home to find my missing camera warranty, since Best Buy mysteriously has no record of my purchase...oh well.

Hence good nite :)

 I sleep a lot, but when I am awake I get bored.  It's not so easy to focus on a book, or on anything.  I have a lot of important paperwork that Just Has To Wait.

I've got something very flu-like, despite it not being our flu season.  I don't THINK I am one of the brand-new swine flu victims, but because I just spent time in a large metropolitan area and because I am immunosuppressed, it is a slim possibility.  I'm not going to sit up nights worrying about it.  I'll leave that to my poor germ-phobic mom who has severe and untreated OCD.  However, my fever is gone.  I just have a cough and am very weak and achy, tire quickly, and sleep a lot.

I was hoping to take dburr to the fair today.  I will try for tomorrow.  If not tomorrow then Sunday although I think it closes early on Sunday.  If not, I miss it yet another year, and feel badly about it.  I've been missing a lot of stuff lately.  I try not to whine about it but I've been sick a lot.   More sick days than well days.  /shrug

Anyway, trying to think of nice things like flowers and waterfalls and robins in springtime, or something.  

I thought it would be fun to read about writers who were born on my birthday, but have you checked out the bios of Oscar Wilde and Eugene O'Neill?  Health and long life, um, not.  I'm switching to acting.  Then I get Tim Robbins and Angela Lansbury.  Oh and Suzanne Somers.  No, I don't look like her.  Don't even go there :)

I want a get well card and flowers.  I never get those.

No, that's silly.  Really silly. Maybe the fever is back!

 I was so happy the weather was better today and I had so many things I wanted to do here at home (some of them even fun! and some more like....cleaning out the crab tank...)  However, my body had other plans.

I'm trying to get well enough to go to this sometime this week.  A very treasured friend of mine is responsible for an important part of it and I always feel terrible when I am unable to see her work.  And I missed last year :(  So come on, my dear receptacle for the soul, could we please plan on functioning by Friday or so?  Haul ass, fgs.

Ok typing this was a major effort; guess it wants to rest again for an hour.  Honestly.  Almost useless.  So frustrating.

 OMG I hurt.  I've fallen into a lupus flare and have a nice array of typical symptoms to cope with.

I wish for the car that drives itself...because then I could take my pain medicine.  I can't always just stay home, especially since dburr  can't drive.   So I tough it out.  Today it's going to be tough to be tough.  Really absurd amount of pain.  I felt it coming on and tried to ward it off with rest, but I was under stress and that just did not work.  A for effort is all I get on that one.

 It is not really necessary to slam me with a massive dose of muscle and joint pain every time I don't get a good night's sleep.  I am aware that sleep is important for good health.  It is in all the magazines and on all the health blogs as well.  Hard to miss.  Consider me informed.

Best to you
Your Exhausted Victim

 The hills still have wildflowers on them and look pretty.  Eventually the sun will turn them brown but that seems to happen at a different time every year.  Someone needs to get Vegas to set odds on exactly when.

I had a wonderful Easter with my family.

I was bedridden yesterday and I am not sure why.  Every time I woke up, and tried desperately to start my day, I fell right back asleep.  I also had joint pains and extreme fatigue in the brief time I *was* awake.  My blood sugar was somewhat high.  And I could not focus my eyes, hence could not even attempt to make an online appearance.  

Woke up better today, which was good, since today was my appt. in LA to see my rheumatologist and to continue being followed in the "B cell group" for the rituxan study I was in.  I think because there were two deaths, they are still following those of us whose B cell levels haven't returned to our baselines.  I'm not sure I want all those B cells back; what if their depletion is the reason I've had less lupus activity after the rituxan therapy?

I was told today that although the study failed, since I was one of the patients who responded, it is possible I could get the drug if I paid out of pocket for it...when the time comes when I am really going to need something. 

Q. We can't have a single payer system in the US, can we? ; we don't want health care rationing! 
A. We already ration, by ability to pay, you dangerously deluded dittohead.

"The biologics" as they are called are an advance for autoimmune disease treatment in that they seem to work for at least some of us and thus allow us to get off of (well ok I didn't get completely off but I got close) steroids, which have really lousy side effects.  I should know how lousy the side effects are, since I seem to have managed to get almost all of them.  It has been known for years that the problem with more-than-mild lupus is that you prevent early death by treating with steroids but then 20 years later you start seeing the deaths from the steroid side effects.

This is why other drugs are tried.  I sure tried them.  I either failed on them or got side effects that were impossible to live with (literally live that is; side effects which kill.)  Now it seems the biologics hold out some hope for me.  Except that they don't, because Medicare Part D won't pay for them.  Some insurance plans do; some don't; some will only for an RA diagnosis (rheumatoid arthritis; which was my first diagnosis years ago.)  Drugs basically don't get approved specifically for lupus...

Q.  Did you see the news story about that poor girl whose insurance company wanted to deny her payment for a liver transplant?  I was so shocked!
A.  I don't know what opium den you've been inhabiting the past 20 years if you haven't seen anyone die because their insurance won't pay for them to live.  I've seen more than I want to see of it.  If you keep a close eye on me, you may get to see it for yourself, soon enough.

I felt kind of weird after discussing this kind of stuff and drove around LA for awhile after my appointment...listening to Everlast turned up too loudly.  I don't really worry about getting lost if it is still daylight because I know what direction I need to go in to get to a road to home.  Eventually I felt a bit better, better enough to leave LA before rush hour.

I found my family home and able to have me visit on my way back, which was nice.

I saw an incredible sunset, which I did not try to photograph, not only because my photographic equipment and probably skills are not the greatest, but also because I was driving a car on the freeway at the speed of traffic, about 85 mph at that point.

The sunset made the ocean a really incredible silver-blue.  The waves were pretty high (for us) today; I wondered why.  It was strange, too, that as I was going by it looked like the waves were not moving.  Probably one of those physics things I don't understand.  Interesting anyway.

A friend kept me company on the phone for the long drive home.  I made lousy time, for the same reason that I was actually late for my appt. earlier in the day, due to unexpected road work in several places.

I'm home safe now but very tired.  


I have a very long list of Things That Should Have Been Done Much Earlier for tomorrow, but I don't feel like looking at it now.  

I wish I could take my broken heart, oh and my broken body too, and do something rebellious and dramatic, but I'm just a middle-aged woman who has to find $2000 in couch change or eBay sales or charity or miracles soon to pay off one credit card and also has a messy abode to try to pick up while limping on one foot...so you won't be seeing me on CNN any time soon.

Might see me on the 101 though; I seem to have to be on it just about constantly.

(Oh! and the thing about my photos is this:  I know I only have a cheap camera and can hardly walk and (list your favorite limitation here) I am not trying to win some sort of Kodak award.  These are just memories.  My memories.  I share them just in case anyone else finds them of interest.  "Take what you like and leave the rest" (that's from Al-Anon...or was, years ago.))

Sunset on the 101:

 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!

 It's the kind of day I love to go outside...cool, some clouds but interesting ones, some blue sky.  Not too much UV  :)  And I kind of had a nice late afternoon planned for myself.  I was going to get an iced coffee (cream but no sweetener!) at McD's (cheaper than Starbucks), take some cloud pictures, and then go to an orientation for our local Big Sisters program (the economic crisis has hit HARD here and I'm concerned about local children)...and THEN have some Thai coconut soup (cheap, delicious) while catching up on my email, and THEN come home and try to pick up a bit, at least so some folks coming by tomorrow might be able to walk safely w/out tripping over things!

I'm also very nauseated, find lights irritating, and have a bit of pain on one side of my head.  Migraine.  Will it get better or worse in the next 20 minutes?  Sigh.

I did see my neurologist yesterday (who is an extremely good one and knows a great deal about SLE; the kind of doc I'm trying to keep since the level of expertise of my docs will directly affect my lifespan...but of course Medicare Part D wants to send me to an HMO to be able to afford my medication.)  He wants to increase my migraine preventative medication temporarily and gave me samples so I wouldn't have to make the migraines worse fighting with my prescription drug insurer.  There should be more people like him in the world!

I'm telling myself I will not have to stay home for the rest of the day.  Sometimes I can force myself out the door by cheering myself on.  But there is no denying I feel like crap.  Sigh.  Lupus sucks.

This type of thing is one reason I get so frustrated by people telling me I need to exercise more.  I wish I had even 1/4 of their opportunities for exercise.

 It is hard to lose weight when you have to stay in bed a lot because you are too sick to even sit at your desk.  A lot of these anti-obesity crusaders are health professionals, and I wonder just what I would need to do so they would listen and beging to understand the difference between someone who loves sitting on a couch watching tv and eating potato chips, and someone else who would rather be body surfing but is instead zapped by lupus.  Maybe once it gets warmer I can carry a spray bottle and squirt the clueless.

 I'm trying to keep what I think is a bout of clinical depression getting worse.  (No, I didn't just feel depressed this second, and the fact that I slept today actually probably means I'm starting to come out if it.)  I think I'm better today but I'm not sure and I really don't want to end up on more antidepressants than the ones I already have to take (thank you, prednisone, for all the really special side effects you have given to me over all these years.)  

I just wondered if anyone had any urls they've kept to funny pictures, stories, videos, cartoons, whatever.

If anyone reads this, that is :)  (((hugs)))