Beep's Purple Blog

 Well actually, the balance is getting tipped more and more towards hate.

I'm talking about my decades spent with the drug prednisone.  What do I love?  It is life-saving in lupus.  It is cheap.

That's all, folks.

What do I hate?  The changes in my appearance from its effects on fat metabolism.  I have not really liked having joined a hated group, the obese.  I read yesterday something to the effect that we are now all going to have to buy two seats on airplanes instead of one.  It's always something.  People assume obesity is a choice.  Not everyone on prednisone gets stuck with it and some who do have it from increased appetite alone, but I managed to get the whole metabolism changed.  Or killed.  One dead metabolism, lying on the freeway, being run over by cars.

I hate the extra hair on my face and the really lousy psychiatric effects and the really painful and debilitating bone death as well as the osteoporosis.  I hate the high blood pressure that lead to heart damage, the cataracts that had to be removed and since I can't afford trifocals all of you who criticize my parking skills now can just go. pound. sand!

And I hate the diabetes.  

I AM a motivated patient.  I don't look like one, but I am.  I have gone to extraordinary lengths over and over again to get off of this drug w/out dying of lupus.  I've tried treatments that have harmed me in my efforts.  Finally two work but I have to take both.  I'm at my max dose of one and can't afford more treatment with the other.

So I now try basically to not have lupus flares...or to not let little ones turn to big ones...oh God how I try, but when I finally do hit a wall I hit it really hard.   So, I'm back on.  I'll be either overly emotional or a bit bitchy.  I'll never get good sleep.  And that's only the beginning.  But I won't die of lupus next week.  I'll die of prednisone, I guess, when it decides which of its horrid side effects is going to get me first?  

Well now that I'm on them the smart thing to do, although counterintuitive, is probably to take a lot and try to blast this flare out and then go back down on the prednisone.  So....here I go! 

At least for this afternoon (when I had to give in and take the stuff, or go to the ER and then be put on it! Chose the former)  the steroids have actually helped my thinking better instead of wigging me out, and I'll just cross fingers and toes for tomorrow.

Lupus.  It's a nasty disease, not a lifestyle choice.

Prednisone.  For all of us who have karma to work off. Results guaranteed.

 Early this morning, I had an attack of angina unlike any I've had before.  I did not like the squeezing feeling.  

I am going to have to take a break of some kind and just hope I can finish all the forms I'm working on right now in time for their deadlines when I get back.  I don't even want to see my blood pressure or my blood sugar right now.  I know the numbers are bad.  I think I've had too much on my plate for awhile and my body is screaming "no more."

I am exhausted.  Oddly calm.  Like I know I have to take care of myself and I only get one chance so I'd better make it good.

Tomorrow I'm going south to meet my mom and then north to get out of town for a few days.  They say a change of scene can be a way to relax.  I'm going to hope "they" are right.

April, my cruelest month.  The only month that wants street cred.  Ok April, you've done it all; go ahead and swagger down the street.  I'll try to face you with a smile, somehow.

 There I hope my title is ok for both theists and nons :)

I got lucky.  Help for my emergency situation turned up when I tried calling every local resource yet again like I have done over and over again before.  I don't know what inspired me to even bother to try it again for the thousandth time, or why someone who was willing to help was actually staying late at their office AND deciding to actually answer the phone after hours.  When does that ever happen these days?

I still have a bundle of serious new and immediate financial problems and a few medical ones as well, but the truly dire emergency is being handled by someone who has the credentials to do things I know I cannot do, which is what I had most wanted.  I could not be more relieved.  My gratitude journal will get a long entry tonight!

 I got into a political/economics argument Sunday, at a party at a friends' home, the party meant to celebrate a contract their company had received which even includes some work for my benefactor, dburr  .  I could not be happier about the contract.  This will at least extend dburr's unemployment benefits, which is at least 50% of what we have been living on (the rest being my tiny contribution towards my own support, and charity from family and friends.)  It is wonderful news for everyone involved.  

 If I was sick before, I'm destroyed now.  The place does look better.  Dburr did a LOT and is exhausted as well.  Also a local friend came over to help.

I pray the landlady accepts what we have done as Clean and Neat Enough  and that she is not here to raise the rent, with dburr still unemployed...

There really has been NO break in the action for me.    At this point I'm wondering if I will end up being hospitalized to get some rest!

Of course two credit cards have charged me late fees when I wasn't late just in case I had some idea I might go to a Super Bowl party.  Must ask dburr to record it.  Even he likes to see the commercials!  I have had no time and don't remember what time/channel to record!

I apologize for not returning emails, comments, phone calls today.  I knew we had too much to do for even a normal bedtime :(  Please forgive.

 I have a lot of things I need to get done by Monday.  Some insurance and financial messes to work on, a lot of correspondence to answer, some very important personal things and promises to keep, some very important things relating to my volunteer commitments as well.  I woke up in terrible pain, however...the migraine is still raging, and now it's also joint pains and pain in my lungs.  This is a lupus flare, but I can't treat it with a short burst of corticosteroids because I still have not been able to see a doc about my diabetes despite having learned about it over a month ago.  This is a very unfair and frustrating situation which could become actually dangerous.  If my flare gets worse I'm going to need to somehow get myself to a better hospital than the one I've got here.

No, that's not the big problem; that's just the background!  The big problem is that our landlady is coming tomorrow!  She only just called.  So now we have to clean up for an inspection.  Dburr is upset that I can't do a lot...I am really trying.  I am biting the bullet re the pain, getting out of bed, putting stuff away until I know I am going to pass out, getting back in bed at that point, resting for a short period, and then rinse, repeat.  

You can see why we are tired of renting.

I always tell docs poverty and lupus don't go well together.  Studies bear me out as far as lupus deaths in the lower socioeconomic brackets compared to middle class or wealthier.

Ok time to try again.  Through unavoidable tears.  I don't have my strongest pain med; the pharmacy didn't ask for the right forms from the doctor in time.  So I'm just on a double dose of vicodin.  I know that sounds like a lot but this is morphine-level pain.

And of course dburr  is to be avoided right now; he hates cleaning; he is furious.  

 I woke up a bit too late to see the swearing-in, but I thought I would be catching the replays later in the day.  I saw President Bush boarding the plane in real-time after I had showered, blood tested, medicated for all of my diagnoses, eaten a permitted breakfast, weighed myself per cardiologists instructions, etc.  I used to be someone who could get out of bed and be ready to leave the house in 15 minutes; now I need an hour.

I had to drive to Santa Barbara today because I had an appointment at the foot clinic.  Unfortunately having a couple of major diseases didn't exempt me from the stupid ones.   I inherited grandma's ingrown toenails, and they have to have an in-office surgical procedure bimonthly.  Unfortunately Medicare increased the amount of time I have to wait until I can go back, and my nails grow faster than Medicare, so I suffer terribly anywhere from 7 to 14 days before I can have another appointmnent.  With Raynaud's phenomenon and diabetes and immunosuppression this isn't the best thing to leave untreated, but I can't do my own foot surgery, so I have to keep the appointment on the glorious day the bean counters let me do what is needed to walk without agonizing pain.  

I thought I would go down and then come back and go to an inaugural party here I RSVPd for through MoveOn.  I should probably stop RSVPing for anything through MoveOn because to date something has always prevented me actually attending the event every time I do.  And I wonder why I haven't been making new friends in recent years.  Sigh.

Anyway, for once, I didn't have a medical crisis.  Or at least not a full-blown one.  At the doc's I learned my blood pressure is way too high, and since my blood work comes with a number that says I am at extreme risk for seizure or stroke, I decided to rest and eat something (I was not hungry but I am now on a schedule, just like babies.)  

When I was ready to go I headed towards Goleta which is where I had dropped dburr off to spend time with friends, but when I called him I learned he was downtown.  I really didn't want to go all the way downtown in traffic at rush hour in twilight but I also didn't want to wait an hour for the bus to bring him to me so I went to pick him up.

On the way, I was in bad traffic (locals: upper State St. near that plaza where the Four Winds restaurant is except I was at the other end of the plaza) when traffic stopped suddenly; it had been stop and go for a bit now so I didn't know that actually the car in front of the one that was in front of me had waved someone with a truck who was making a left turn through to make the turn in front of her.  But what I saw on the right (I was heading south of course)  was a bicyclist suddenly having the truck turning in front of him.  I could only see the back of him, but I saw that he stopped with a jolt and a quick backwards motion--so I knew he was hit.  I then saw him crumple to the pavement.

The man in the car in front of me stopped and got out (yes traffic became truly horrendous at this point as he blocked the lane and so did I) and was talking on his cell phone; I hoped he was calling 911 because the bluetooth in my car suddenly had a moody moment and didn't dail it.  There were already some folks on the scene making first aid assessments as well.  So I decided to get my own car out of the street and help keep traffic moving and reduce the risk of a second accident.   But because I thought I might have been the only one to actually see the impact (lucky me--I now get to see it over and over again because it was horrible and my brain will not stop replaying it) I thought I had better stick around for the police report.  I went around the scene and then turned right and parked in the lot.  By the time I walked up the parking lot back to the scene the paramedics from the fire station down the street were already there, so no more first aid was necessary.

I heard them asking the victim about his asthma inhaler and if he was breathing ok.  They seemed to conclude that he was.  I wondered at that point if asthma meds contain enough steroids so that a patient would need supplementation to prevent an adrenal crisis in a trauma.  That's the kind of thing  I would think of, after all the catastrophes in my life.  I don't need to ask my docs while I am also taking steroids for lupus since in my case the answer is yes please monitor for adrenal crisis but I wondered about people who only had asthma and were otherwise healthy.  That was what I thought while I really could hear better than I could see.  

When I got close enough to the scene to stand where the other witness was standing, the one who had seen the truck make the turn but did not see the bicyclist get hit (although he heard it), I could see the victim and I don't really want to say much more except that although he was conscious it was still pretty horrible.  There was blood and the paramedics were trying to find his teeth on the blacktop.

A man came who seemed like he might be the representative of the man who had driven the truck; he wanted the names and addresses of the witnesses.  I told him my report wouldn't be so helpful to him but I gave him my contact info anyway.  All I'm going to be able to swear to is that I saw the side of the truck collide with the bicyclist.  

It took awhile before the police arrived to take our licenses and statements.  My hands got Raynaud's cold and haven't warmed up yet.  I got a blood sugar headache.  I still had to go farther to get dburr and then 75 miles to home.  And stop at the pharmacy.  Where my thyroid med still hasn't had the prescription renewed and they had to give me loaners (well they gave dburr loaners for me; I could not bear going inside for a whopping fluorescent light dose at that point.  

I'm home now.  And I'm going to watch the inauguration.  Thank you, You Tube.

Moral of the story:  always go to the party instead of to the scene of an accident.

I could still drop in, but I'm really tired.  And I wonder what the old blood pressure is now.  And believe it or not, I have to go to Los Angeles tomorrow for a follow-up for the medical study I am in which gave me Rituxan last year.  I'm in the "B cell group."  Unlike some of my friends, I don't have insurance that would pay for a steroid-saving biological agent, even though I've managed to get almost every bad steroid side effect.  I am not about to pay for $5000 injections myself, either.

  My mom talked with my godfather today and there is a positive development: my godmother is starting to recognize people.  I am praying hard that she pulls out of this.  No matter what happens in the future, we all know now that if she does, we need to spend some special time with her asap.  I also really wish she would come to CA to see some of the docs here, but that's another story.

My own blood sugar is still too high after meals.  It seems I tolerate two things so far: unsweetened iced tea, and plain celery.  Not sure I can build a nutritious diet on just those two.  However, the BS (yes I call it that for a reason!) is better than a couple of days ago.  I am asking everyone who is close to me to please cut me a lot of slack right now until the BS is stabilzed, either by diet/exercise or with the addition of meds.  

I have the unpleasant task today of going through my address book again to delete some of my recently deceased family and friends.  I'm not going to have much of an address book to manage any more.  What a strange thing it has been to lose so many people in just one year.

I also need to try and figure out how to publicize a speaker coming to my rheumatic diseases group next week.  I wasn't well enough to go posting flyers all over the place as I would have done had yet another new diagnosis not sprouted up...

The coming days are a bit crazy.  Santa Barbara tomorrow for foot doc (which is going to be pretty important now with the diabetes) and I would really like to find a good place to view the inauguration if I don't get home in time.  Is this really Bush's last day in office?  Pinch me so I know the nightmare is really over...no, I don't hate him; I think in fact he was poorly advised, but his presidency has been a poor fit for the times we are now living in...

Wednesday I have to go to LA for my regular post-experimental chemo checkup...

Thursday back to SB to see the diabetes physician assistant...

I need some rest; trying to get it today.  Relax.  Breathe.  Think beautiful thoughts.

 No news re my godmother :(

When I think about that the blood sugar goes way on up so I have to do things like take deep breaths or look at soothing photos or something to try to keep the stress outside of my body instead of in it...I assume crying is ok since it is a release but it's the stoic stuff that kills, I think.

This was taken at sunset in Santa Barbara last Thursday.

 Aha I learned that stress can increase blood sugar levels.  So even though I'm doing everything I'm supposed to be doing, all the stuff I'm worried about could eventually kill me.  Amazing.

I'm worried about a lot of things.  One of course is what is going to happen to my godmother.  She is still in ICU and as far as I have been told still is not speaking.  

 My mom and sister and I don't discuss this often but we all three frequently have dreams about things that later actually do happen.  I'm not trying to make any pro-paranormal argument here; I did learn about the human brain's tendency to try to find patterns in random events...perhaps we are picking up on clues that we haven't fully consciously recognized or had time to deeply think about which would make what happens next a logical result...etc.  No time or energy or interest for that potential argument now; I don't care about the mechanism because right now I have to deal with the content.

After hearing about my relative yesterday who had passed away (my stepfather's only sibling, actually his stepsibling, which means that he and his entire family of origin are gone now) I had a dream about my godmother.  I've been meaning to write my godmother a letter about how much she means to me.  My sister actually did that but I have just had one calamity after another and I wanted to do it in an upbeat frame of mine.  Also I know she much prefers calls to letters; I am the other way around so I was struggling with myself to try and force myself to actually make the call.  One of my biggest regrets is that I had wanted so much to tell my stepfather (whose conflict with me for years reached epic proportions and is pretty much part of family lore now) that I did recognize and appreciate very much all of the good things he did for me but that there was just never what seemed an appropriate time to express my gratitude.  I was working on this idea when he died suddenly over a New Year's weekend, when a friend of mine who is a local doc has always warned me to avoid the hospital if I could, since the best docs are usually gone then.  Anyway, I usually mark the anniversary of his death, but I didn't this year because I had just got news of the death of a friend.

Ok enough rambling.  Both my mom and I had the same dream independently of each other that my godmother (my mom's best friend; one of my two closest links to my own father who was rarely if ever discussed after he died when I was six) was in serious trouble and could die.

Today my mom found out that my godmother is in the hospital in Las Vegas.  The doctors think she probably had kidney failure.  Her children have been visiting her and my mom asked her husband if she should go to Las Vegas to visit her also but since my godmother cannot speak or walk and has always had a lot of personal pride he was thinking she might not want very many people to see her as she is right now.

My godmother has always been significantly overweight and when the tonnage descended upon me as one of many horrific side effects of steroid treatment for my systemic lupus she was the one who showed me how to find clothing in my (new) size.  She has been battling diabetes for some time now and so has really tried to lose weight but she has inflammatory arthritis too like I have (her dx was RA for the medically inclined) which makes exercising frequently quite a challenge.

The kidney failure could be from the diabetes, or something else.  Kidney problems are common in lupus, the one major lupus misery I seem to have escaped (and if some dark force is listening and thinks I should have that on top of everything else let me tell you right now you are going to be one badly injured dark force if you so much as even get near my kidneys.) but I would think if her autoimmune stuff were actually SLE someone would have diagnosed it by now.

Anyway without even asking I am sure her children and her husband would like to have at least some time with her this year where she is coherent and well enough to be told and to understand how much she has meant to them; I know my mom and my sister and I really need that since we have not lived near her for many years; I am just praying we all get that chance.  If you feel like you would not mind doing so please please pray with me.  

It's a cliche but I really am learning, the hard way as usual, that you have to tell people how much you care for them as soon as the feeling passes through your heart and mind because they could go out to pick up pizza and get in a car accident and never come back, or have an anvil fall on their head as one of my doctors (master of black humor) used to say.  

I encountered two instances where I felt I really had to speak up about what being forced onto Medicare Part D is doing to a lot of us (threatening our lives; not very nice at all) today and I also ended up having to be the one to tell a fellow SSDIer just how much trouble they were in with the Medicare Part D donut hole looming right in front of them, which was hard on them and on me, and  I was going to write about that, and also I did get to see a wonderful sunset at the best beach in Santa Barbara where the weather was perfect and I was going to see if the photo came out...but with all this news and my own problems with my blood sugar not stable yet and the high fiber diet being rejected by my GI system and so far having to treat and monitor this all by myself I am just really tired and don't know yet if I have another post in me.

I hope I'm not being selfish.  I am thinking of all my family and my friends, especially those of you who are going through difficulties, and so many are at this time due to the economy (I wanted to blog about that too because it is becoming really clear that something has to be done or it's the Great Depression, 21st Century coming right up at an unemployment line near you) and I think the stress of the economic mess is triggering other things in people's lives like health problems and relationship problems and a lot of the other things folks have been telling me about.  I just feel bad I'm not always in touch these days but when I go through rough patches I'm aware that not all people can TAKE being around my life because sometimes it is just so unbelievable.  I'm worn out just describing what's going on half the time.  Anyway I'm starting to make just about zero sense because I'm tired so hopefully it can be believed that often these days I'm at the computer full of positive intentions to get something done or to reach out and see how someone is doing and before I accomplish that...I fall asleep.  I now have to remember to periodically clean out my bed of the things I fall asleep trying to do.  Last night I slept with a pile of bills, my cell phone, and some clothes I was going to hang up.  I kept bumping my ingrown toenails on the coat hangers and that hurt.  

When I talked with that religious counselor back in November I remember him saying "This is too much.  The Lord is going to have to give you a little help, now."  Well I would like the Lord to help my godmother, actually.  And her family.  Our families were so close when my father was alive that we really were one family.  She is my second mom.

I didn't get to see my grandmother before she died.  I had been closer to her than a lot of other family members and no one could understand why I wasn't there.  It was actually difficult to find affordable last-minute plane tickets.  My mom and I each learned about ONE...and it was the same one!  Naturally she had priority.  If I had had the extra $ or I didn't live about 3000 miles away I would have been there.  A counselor once told me I should have spent the money (more credit card debt maybe?)  This haunts me so much now.  And I missed seeing my stepfather while he was coherent as well, due to a bizarre weather event that kept me from joining my family early enough on New Year's Day (we had hurricane-force winds and downed trees and one was hanging from electrical wires over my street; dburr  had no flashlight/batteries and there was no power...I took him to the store to get supplies first.)  That haunts me too.  Now I don't know if I should go to Las Vegas now.  I have no money and I'm covered with all the sores from the things the derm had to burn off of me today and I am exhausted but maybe I should go?  I don't know.

Ok enough babbling even though it doesn't matter now since I doubt anyone reading has lasted this long :)

If you care, send me a hug; I wouldn't ask if I didn't really need it.  The phrase that keeps going through my head at odd moments is "In Space No One Can Hear You Scream."  Not very positive.

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!

 If I don't have appointments the next day, I start thinking seriously about using a sleeping pill...

going without sleep always makes me a lot sicker, really fast.  

What a lonely time of night this is.  I feel like I am the only person in the world.

I didn't want to just waste time, and it isn't a good time to exercise and possibly wake people (although I am really tired of being overweight and would exercise every single minute if I could), so I worked on one of my many screwed-up web pages.  Yes, I know it still sucks.  I will keep at it and if it helps even one person it will have been worth it to me.  

I am always trying so hard to justify my existence.  Maybe one of these days I will at least feel within myself that I am not so bad.

I need to send my doc an email re the battle royal I am having to get my chemo drug paid for again.  Then I can take the sleeping pill.  Although I also need to fill out the forms to let my Medicaid case worker center know that I did buy a (useless) dental insurance plan for which I will pay monthly premiums which will reduce my countable income and hopefully get me back into the zone where I can get prescription drug coverage from somebody for 2009.  Although what is ominous is that SSA is planning the largest increase in Social Security checks in many years,  Of course, that is supposed to *help* us, but I live in topsy-turvy-crazy-land thanks to being unable to live without expensive health care.  

I hope I'm not going to hell, because I really feel like I've been there, done that.  There are some things I still love about my country, but its treatment of the chronically ill makes me sometimes wish I were Venezuelan.  Yes, real socialists there now.  Oooooh.  Quick, someone needs to turn me in to...well...someone, I am sure.  But I am tired of being treated like I've committed one hundred felonies because I got sick while a citizen of the wrong country.  I didn't choose the illness.  Or the country, for that matter.  Fighting for health care all the time has kept me seriously ill, which is why I feel like a female, modern-day Sysiphus.  So of course there are always going to be times where I am tempted to finally get some rest and let the damn rock roll over me.  That, or throw it at somebody.

I have no money, but if I can get out of bed at all tomorrow I am going to see the James Bond movie.  Rebellion of a sort.

 I just went through a really nasty but thankfully short bout of depression.  I have had this before, and I'm not really sure what the best thing to do for it might be.  I do reach out to professionals, who are usually horrified by the stressors I am trying to cope with and what they consider to be not a large amount of social support that I have.  It's true that I get these sort of "attacks" more often when I feel totally overloaded.  But since they come on so fast and blindside me, and progress rapidly from normal mood to dangerously suicidal, I would really like a treatment plan or at the very least some sort of damage control procedure.  

I don't always even remember everything I've done while trying not to end my life, so I don't always know what relationships I have to repair, etc.!

I also know just from long experience that criticism when I am in this state can send me from suicidal ideation to an actual attempt, and anything positive like praise, compliments, telling me I am useful or wanted enough to warrant the air space I take up and the resources I consume, hugs, etc. help me a lot.  I try telling people this when I am IN the bad state but it often comes out garbled.

Once I tried calling 911 and was taken to the hospital but they didn't really know what to do with me.  My psych at the time warned me not to do that again because the knowledge a harried ER doc might have of major depression caused and/or aggravated by SLE and by steroid drugs could be very small, and I might get badly misdiagnosed (or locked up via a 5150!.)  That's fine, but sometimes knowing what *not* to do is not enough; I need to know what TO do.  Likewise, the mental health pros have basically trained me to reach out when I am feeling that badly, when actually I am often safer if I isolate myself, since I have a history of surrounding myself with critical people and also have been blessed with the challenge of a disease which is invisible.

I do notice more of these episodes now that I am on Effexor.  I was better controlled on Celexa, but the Celexa completely stopped working once I tried an experimental chemo for the lupus (Rituxan) and medical knowledge isn't at the place yet where it can tell me just why that happened.  It's not easy being a guinea pig...

Oh well.  I am getting better, but for no reason.  Whatever cycled out is cycling back in on its own.  I apologize very much to anyone I might have scared or offended and am again grateful to those who helped pull me out of it this time.

Of course I feel embarrassment, remorse, regret, guilt, shame over having these episodes.  I wish they were voluntary, but they aren't.  Basically, sometimes lupus just sucks.  I lose a lot of friends and potential friends over one damn symptom or another and this mood swing stuff is a big friendship killer that unfortunately I get to carry around with me with the rest of the "lupus bundle" on my back.

I may start putting all of my lupus-related stuff at another location, but I don't have the page ready yet.  Everything on it is crooked!  I need to learn how to align items on a web page properly...AND the colors clash.

Thanks for putting up with me, those of you who do.  

If you hate my writing, just don't read it...this is not a requirement and there will be no quiz afterwards.

 I realized one day that I am  not a machine.  I can function alone with no feedback whatsoever, but I have a physical body which requires that I interact with people if I am going to survive---the odds of my making it alone in some desert or wilderness are very low.  So society has had to put up with a bit of my presence.  And in all of my years I have noticed that there is something about me which draws criticism like FMR Fruit Treat draws my pet hermit crabs.  I've had so much of it, and so little praise to balance it, that I go through periods where I feel that the best gift I could give to my world would be to withdraw from it as much as possible.

With my rational mind I can see that at least once in awhile I make good contributions.  I see people enjoying gifts I give them, enjoying hobbies or creative pursuits I suggest for them, getting out of trouble following instructions I give them, etc.  So I'm not totally useless.  But I rarely hear anything about what I may do to albeit marginally make the world a better place.  Instead, I hear about my mistakes, foibles, faults, what I do that is not pleasing...over and over again.

I used to be confident in my writing ability.  How long ago that seems now.  I'm just about ready to stop writing forever.  Including letters and email.  I've had two people in my life tell me they don't like my emails.  I've had a third tell me they don't like my Christmas letters.  How many people do you suppose get negative feedback on sending out a Christmas letter?  I would think maybe...one.  Me.  I guess if I had $ it would be ok with the world for me to write checks, but that would be just about it.  I wonder what my new outlet will be for my thoughts and emotions.  Not having people to talk to, I suppose it will be something like pillow-soaking.

I was interested in what others had to say about this ratio and looked up a few links.  At least I know I'm not the only one who thinks about this kind of thing.

http://www.abuse-recovery-and-marriage-counseling.com/articles/parenting/gottman.html

http://www.teambuildinginc.com/article_recognition.htm

http://www.accomplishlife.com/articles/475/1/In-Praise-of-Praise/Page1.html

http://newsgroups.derkeiler.com/pdf/Archive/Alt/alt.religion.christian/2007-02/msg00117.pdf

 I have been desperately holding my eyes open all night, even wasting time on the computer hoping someone would email or chat with me or something and distract me.  I am really tired and I didn't figure out until now why I haven't just gone to bed.

It's the bad dreams.  Now that they're baaaaaack...I seem to be trying to avoid them by not sleeping at all!

Hmm.  That's not going to work.

I know I'm talking to myself here but I'm the only one I've got whom I can talk to.  I wonder if I should just set this LJ to "Private" and have a diary instead.  Interesting setting.  Then I would not be inflicting myself on anyone.

Ok good night.

 Someone said to me, "Calm down.  It's ok.  I know you've tried hard all  your life.  It isn't your fault you got so sick.  I'm not going to let you become homeless.  I love you and I care about you.  You can always stay with me."

I felt a LOT better.  I think I've been having an under-the-surface panic attack since the latest threat to my survival showed up nine days ago and I was able to let go of it and relax.  And let the tears out.  And let the million billion ton weight of guilt begin to ease up a bit.

The problem is, I woke up.  Still crying.  And that voice?  No one I know.  

Reality bites.  I do have friends who would let me live with them for free if they could, but they seem to mostly come with spouses or spouse-like entities who would put the kabosh on that one.  It's just too lucrative to rent rooms now for both members of a couple to feel at ease about giving up that potential income if they are going to have to have the inconvenience of an extra person.

There is one Christian couple whom I feel badly about taking charity from yet again, but I could end up in their spare room...


Not sure what I would do with my belongings if I'm in someone's room in their house.  

I don't understand why all the storage facilities want to give you a quote.  Doesn't anyone just publish their prices?   And how do I know they don't have rats?

Ok.  Don't think of rats.  Back to sleep.  

Why disability programs don't give you enough to live on?  I don't know.  It is possible that at one point in time, they did.  I can't be sure. 

And why I could not have been blessed with a not-so-direly-unhealthy body and a personality that makes me a joy to be around, I can't understand, if I'm going to be a dependent all the rest of my life.  At the very least, I should not have had to put up with obesity as a medication side effect.  To have to beg for shelter, I should have been -- cute!  Sheesh!

Things are badly arranged.  I want a re-org, and I want it now.

Don't. Think. Of. Rats.  

Don't. Think. Of. Bridges.  Stay in a No Jumping zone.

 I'm going to be getting some financial help.  I have almost enough to get thru the end of the year. If I can get there that would give me a whole month I didn't have before to find out more about Don's situation and my own, to begin to pack up a little at least, to explore options, and to get some rest so I don't end up in the hospital like last time.  

I am so grateful that I just want to sit down and cry.  I was looking at December 1 coming closer and closer and getting sick with worry.

The more time I have before I absolutely have to vacate where I am the more likely it is that the physical and emotional miseries of moving to who-knows-where won't literally kill me.

Thank you.  You know who you all are.

I owe a lot of people my life at this point.

You know, I would never let a friend of mine become homeless.  I could not sleep for one minute knowing a friend of mine were in that situation.  I never have any money to give thanks to the stupid mess I am in but I would find a way even if it meant every room had an airbed in it and my car was occupied as well.  Just so you know I've got your back in my own little way.

Boy, you find out who really cares, when you have this many crises one after the other.  My "God please take care of...because they are such a good person" prayer list is getting longer and longer!

 I wish anyone I knew were awake, to talk to me.

I dragged myself out of shock-and-horror state a bit today but have more mood improvement to work on.  It's better now late at night because it is cooler!  It's hard to cheer up when on the edge of heat exhaustion.  Not that I have a clue what I'm going to do about the finances or anything like that.

I'm not usually lonely when I have books to read, but I'm lonely now.

Sometimes I wish I had a fan club.

I do not blame God for my troubles but I do wish someone or something would just swoop in and take care of them since I seem to be completely out of fight-or-flight stuff.  This year's supply was used up too early.  I am thankful for many things.  I am not complaining.  I am just--depleted.  And I know I'm not alone in the world but I need to *feel* less alone.

Was it really only a little over a week ago that I was so happy due to the results of the Presidential election?  It seems like years.  Light-years, even.   Damn, I was young then.

Maybe that was my happiness quota for the decade.  Oh well at least I didn't use it up on something stupid.  Point to me.

 Wish I could really find an Indian Chief.  Probably would have some wise advice.

Saw the attorney today.  Have a lot to work on over the weekend to try and liberate whatever unemployment Don might be getting from our financially defunct state from SSA, who will probably seize it.

Went into town to help him empty his cube.  He loved this job so it was a very sad time.

I am trying to motivate myself to use tomorrow am to try and get some more info to see if I can get out of my health ins mess.  I just can't seem to find things with high enough premiums to pay to get me back into the program I need to be in.  An additional problem is that I have totally ceased to care what happens to me.  I really care what happens to Don; I literally promised his mom on her deathbed I would help him!  And there are some things I really want to make time to do and to preserve for my tiny niece Grace.  I'm not going to be jumping off of any bridges or anything.  I am just tired of having spent most of my life fighting to survive.  I really do feel like Sisyphus and I do not wish to roll that rock up the hill again.  Whatever it is the Universe wants with me, so that I am just not permitted to have any time or money to do any of the things I wanted to accomplish in my life, or to pay back all the people who had to contribute to keeping this social parasite alive, it may as well just take and get it over with.  I really don't feel like spending tomorrow on more government health care insanity.  I'd rather go take photos of where I live, since the odds are we won't be living here in 2009.  

Almost everyone I know seems to be very unhappy with what the economic crisis has done to them.  I feel very badly that I can't help and all I can do is pray.  I also feel very alone with what I am going through.  I don't see how I can even put stuff in boxes.  My stupid body is just so useless.  I am tired of it.

I will help Don find a job, start a business, apply for SSDI, etc.  

But for me, I just don't feel like it.  Just roll over me if that's what you really want to do, you stupid rock.

Of course it is now my least favorite weather--hot and dry like the desert I came from.  Guess it cannot be escaped.  I carry it around with me.

And fire.  I hate them.  So hard to breathe.  All the fires are one reason the state has to cut my health care and maybe Don's unemployment.  But why should we expect those things?  It's every man for himself, you know.  It is more important that some wealthy person can afford their eighth home because that is God and apple pie and the American Way!

Maybe one of their homes will burn down.  Excuse the schadenfreude.

However, there is a lot of injustice in the world, and probably the people who are losing their homes live in them, and have all their memories in them, and only have one of them,  and deserved better than a state that is out of money and out of water.  So I'm praying the fire will be put OUT.  Soon.  I wonder if volunteers are needed to do anything.  Maybe I can find out online.

I mean this latest fire.