Beep's Purple Personal Blog

Great Super Bowl!  Some big surprises!


Commercials:

Liked the dog who got the Doritos, and the Denny's chickens in the White House, and the babies using e trade.

One commercial used one of my favorite songs (Ain't No Sunshine When He's Gone) but I didn't care for the visual.

The Beep Superbowl Report ;)

 It's been two whole weeks.

 Betting is closed.

My surgeon wins!

Pathology report:  it looks like they were able to take out everything that had cancer in it.

Of course I will be checked often after this, until 5 years are up, but reports of my imminent demise have been greatly exaggerated.

My eyes are blurred because they are too dry right now and I can't really see to type, but I'm going to have a lot of THANK YOUS to write. I know some people keep a gratitude journal.  I'm ready to go for the gratitude encyclopedia :)

I love so much in my life and I am so grateful I am going to get to be around longer to be with the people I love and to enjoy the beautiful world we live in.

 I can hum that song, but I'm pretty old.

Tomorrow my very generous and giving friend Joyce is taking me to Los Angeles for my postop appointment at my gynecologic oncologist's office.  I'm told that I should be able to get a report on what the pathologists found from all the biopsies taken at my surgery, which will tell what this cancer's been up to.

And that's all I know.  

There's been lots of drama here.  My mom and dburr are now both completely qualified to be heads of a M*A*S*H* unit (an old tv show that I really liked.)   Today mom sewed an abdominal support after the visiting nurse said "stop being so helpless here" to me when I told her I could NOT sew anything like that.  I forgot to tell her I don't know how to cook, either!  Useless, as a matter of fact!  But actually I really liked this nurse's visit.  She was an excellent teacher and I learned a lot about how to take care of this big incision while it heals.

Well, time to pack my massive bag of surgical dressing and paper tape and extra clothing (good old serous fluid having a field day) and a ton of paperwork and medicines and even an umbrella since it could rain.  Good night :)

Today I went to the local ER, which is a LOT nicer than it was when I was last there. A doctor checked my incision and said it was a great job, the second time the work my surgeon did has received a compliment from a health professional when not even asked for!

Doc said that the redness I have and the pain is inflammation, not infection (not that I have any experience with unwanted inflammation after decades of lupus, oh NO that couldn't be what's going on, right? Stupid lupus.  It never takes a break) and that the bleeding is normal newly post-surgical bleeding or something called serous fluid and is a leakage of fluids trapped in the process of making an incision and then sewing it up. I was given some paper tape (less stressful on sensitive skin) and some gauze pads and told how to make a loose dressing that would leave room for air.

I had called the on-call doc for my surgeon when I first began bleeding today, and he had told me to see a local doctor right away at an ER if necessary, which is why mom and dburr  had to take me there in the first place.  That doctor wanted me to call him back after I had been seen, and I did so.  He said that it all sounded ok and I would not have to go back to Cedars in LA today.  He did want me to be seen by my surgeon w/in the next few days but since I already have the appt. on the 2nd for my pathology results that will work fine.

It's all over and although I have pain and mess to keep clean, all is ok.  I'm so grateful.

But I'm crying because it just all got too much for me for a moment. Not just the cancer but the years of other serious illness, much of which misunderstood and misjudged even by family and friends, not to mention society that is now going to "tea parties" partially for the purpose of making sure people like me are left to die.  I have no monetary value and so my life is worthless.  I don't believe that, but it is how the society I live in is structured, and it is very painful.  Actually, it breaks my heart, and if I think of it too long I just want to close my eyes and never open them again.  I've always tried to do my duty and right now my duty is to quietly die.

I can't be a good disability advocate tonight.  I just can't hear "you people on entitlements raise my taxes and you need to be cut off" type of thing, complete with hatred dripping in the voice or in the tone of the writing, tonight.  I'm too worn out and just hoping I'm worth something to somebody that makes up for what I cost the taxpayer.  And I think guilt maybe is a "death force" that can bring some of us who are trying to live to our knees.  Yes, when I think about what I cost to keep alive (not that absurdly high medical costs are my fault ) I feel guilty about being alive, so maybe my body is trying to work things out so I won't be.


Tomorrow I'm going to take a holiday from the news and from angry taxpayers.  I was feeling ok before I saw some "tea party express" thing on the news tonight and I know I'll be able to collect my emotions from off the floor once the blood is all wiped up.  All in all this was a positive day and I'm just having a temporary blip of overwhelm.  The sky was a really unusually beautiful robin's egg blue and the air was crisp and cool like the autumn day many years ago when I was born to parents who loved me very much.  I am so sorry I did not live up to their hopes and dreams for me.  I know they never expected a social parasite.  I don't know how to make it up to them.

I had a total hysterectomy on the 22nd. I didn't have an easy time in the hospital. Long story there but can't tell it all now :) Was discharged on the 26th and been making progress at home until today. Today the incision is more painful than it was (which is saying something) and is bleeding. I am waiting for the doctor on call to call me and tell me what to do. Also Medicare has been paying 100 percent for me to have home health services and today is one of the days when a nurse is coming to visit. She might be able to help me.

My body irritates me. It seems to always wait for a weekend or major holiday to have emergencies!

I will know more about the cancer on the 2nd when my postop appt. is scheduled, in Los Angeles. That is when the pathology report will come in and I will learn what all the biopsies done during surgery will reveal.

Still alive at any rate :)

http://710lupuslife.blogspot.com/2010/01/and-now-im-going-to-complain.html

I think it is easy, or should be,  for those of us living a tad too close to the San Andreas Fault to imagine what a big earthquake would be like if we lived in a country in which poverty made building earthquake-fitted buildings impossible.  And someday, we are warned, the Los Angeles area is going to have a quake which will outstrip what preparations have been made.  When that happens, I pray the world will be kind to us and not judge us by some of our celebrities who are behaving in a very bizarre manner.

I do not remember the Republican party or the Democratic party ever taking a stand against helping victims of a natural disaster.  I wonder if this trend will be extended to such victims within the U.S. as well as without, since already we hear grumblings such as "well those people CHOSE to live there" when there is a disaster ...as if there were many places in the country where people could live that would be guaranteed against natural disasters of every kind.

Clearly science education in the US is in trouble:  Pat Robertson believes devastating earthquakes can be caused by human behavior.

Basic economics is clearly in need of remedial efforts:  Rush Limbaugh believes that the aid to other countries paid for by US income taxes is enough to assure that every country has enough funds to cope with a serious disaster.

Because our nation is so bitterly divided along the line between our two major political parties, many of those on the Republican side are jumping into the debate defending the comments of the two pundits mentioned above.  I am very sorry to see this, as I am old enough to clearly remember a time when this type of cruelty would not be praised by any of our political parties.

It is my hope that other nations of the world will realize that not all Americans have become completely insensitive to the plight of injured and dying people and that many of us are doing what we can to help the victims of this terrible earthquake.  We are not all that superstitious, that avariciously bitter, that selfish, or that blinded by ideology.

Helping a country with a corrupt government and in severe poverty (the latter often a very huge factor in permitting the existence of the former) is a challenge, but we know that some people and organizations are going to be able to make a difference and have experience in these types of conditions.  The fact is, poverty is very dangerous, and that's true in the US as well as elsewhere.  I can tell you a lot about it if you really want to know!  But that is no excuse to leave innocents stranded now.  As for the corruption, well, I certainly don't want to be judged by everything my government is doing at any given time--do you?

America is now hated all over the world, but the American people have always had a reputation for being generous in the face of disaster, whether in or outside the US.  If that spirit is gone, then the country I was born in doesn't exist any more.  Just thinking about that possibility is what is making me cry right now.

Some of the helpers:

American Red Cross

The Humanitarian Coalition

Doctors Without Borders

The International Rescue Committee


I don't care whether you are politically on the left, the right, the top, the bottom, or the moon.  Just try not to be an asshole, ok?

PHOTOS



And if you are Christian, read The Sermon On The Mount again.

Matthew 5

Matthew 6

Matthew 7

I also happen to think Matthew 25:31-46 is relevant.

Sorry, Pat...I think you might just be one of the false prophets.

 Our friend Tom King came by to stay the night as he was working up here...and immediately after he rang the bell, dburr  arrived home!!!  Deep sigh.  One crisis, over.

 I don't know what is going on, but I'm being driven mad.  I can't keep putting everything on a credit card since it is getting hard to make the payments.  Every time it looks like I might possibly get things under some sort of control, something happens.  The computer needed $$$.  Car maintenance came up.  I've been spending a fortune at the drugstore every few days for all kinds of medical and medical-caused-needs stuff.  I won't go into a long list, but everything I touch or even walk by breaks.  I've put so much money for gasoline for medical appts. that oil prices MUST be up...

Anyway I'm not complaining but I am totally and completely exhausted.  Financially AND physically.  Much more of this and I won't be able to cope at all.

 All friends and family are important and are treasured.  But in my country, where people are so weird about money, the people who help me with expenses have a special place in my heart and will never, ever be forgotten.

Thank you and I love you.  I also literally would be dead without you.  It takes a LOT in this culture to give the way you give and yet it is the best way to help someone in terrible crisis and in poverty on top of it.

May your path be easy and all your burdens light...

xo

dburr  made it to the shuttle!  He is on his way home!!!

Now I have to find $81.00.  This is going to take another miracle.

One  miracle at a time...

I could never forget your birthday.  We were born the same year!  I hope the day was truly wonderful.  You deserve a carefree year ahead full of fun and love.  You better get it or I am for sure calling the Complaint Dept. !!! I will send one thousand complaints...;)  private joke, there

(((hugs))) xo

 vixter  , his has been a crazy two weeks...but I did NOT forget your birthday.  I hope you had a wonderful day today.  I also hope your coming year is so terrific that it sparkles and shines!  You deserve a lot of GOOD luck to come your way!  (((hugs)))

 I had a lot of blood loss from the stupid tumor(s) this weekend.  I'm ok but really weak, perhaps from anemia.  My mom was visiting and helped me so much with picking up and cleaning and laundry and feeding me...I have to get this place ready for me to recuperate in after my surgery.  I've never had such bad luck in my life; it seems like everything I touched either broke or in some other way caused me great expense.  I've got to get my groove back...!

The problem tonight is that I'm just not strong enough to drive to LA and back.  However, poor dburr  was basically abandoned by Amtrak at Union Station.  This happened to me once and only the strong lungs of a good friend who wasn't afraid to let out a yell of doom got me on my train.  Anyway, what they seem to do is forget to have anyone come by the disabled section and help us get to our train.  Dburr had some idiot say "well, I announced it" -- when you are waiting in that area, it was my experience that you can't hear their stupid announcements.  So dburr waited where they told him to wait...and missed his train home.  Then the geniuses told him they could only get him as towards home far as an hour and half away from here tonight.  I'm in no shape to drive even that, especially to be there around midnight and then drive back here.

So.  Yet another expense.  I've been spending so much on credit that I wonder if I'll live long enough to pay it back.  I wish I were gorgeous and could strip nude for money; I'm that desperate.  Anyway I called the one shuttle company that I know of which goes from LA to where we live.  They instructed dburr on how to get on a bus that took him from Amtrak's Union Station to LAX.  He's at LAX now and the hope is that he will be able to connect with the shuttle around 10 pm.  Until then I will be on pins and needles.  He was so freaked out at being abandoned alone at night in a big city when he can't even see very well that he cried.  All he wants now is to come home.

I think I've called the head of the shuttle company four times.  It really is time for my luck to change and dburr absolutely must get be able to get on that shuttle and be brought safely home.  There is a ten dollar charge for me to not have to go pick him up at the stop here.  I know I should cut out every extra penny but how am I going to pick him up, when I am so weak, at like 1:30 am?  

He's got to be brought right home.  Help me manifest this with prayer and powerful thoughts...!

I WILL be writing or calling my attorney on Monday.

My case of endometrial adenocarcinoma (uterine cancer) has some nasty bleeding tumors which are making my life a bit too dramatic BUT I got the results of my MRI today and it looks like the cancer has most likely not spread outside of the uterus.  With the removal of the uterus and ovaries, I will have a nasty case of sudden total menopause but the survival rate is very good :)

Basically, my response was YESSSS!  :)

For those of us who have faith: God is good.

Ok tumors, you aren't paying me rent, so get the you know what out of here. Vamoose!  Eviction date is Jan 22!

xo everyone

 Not a lot of energy.  Really did not feel like driving out of town, even though it was a truly gorgeous day.   I'm just tired and can't help it.

Got only two posts out of so many on the MUST DO list done today:

http://710lupuslife.blogspot.come/2010/01/waiting-waiting-waiting-money-woes-and.html



The above is now revised and cleaned up a bit.


http://710lupuslife.blogspot.com/2010/01/lupus-brain-i-am-so-tired-of-you.html



Boy it's strange to be writing "2010" all over the place...it looks so futuristic.  Because I'm middle-aged now instead of young, perhaps ;)

 I received a beautiful calendar and mouse pad in the mail (well, two of each, but a dburr  immediately claimed one of each for himself since they look so nice.)   There is no note accompanying them but I do recognize the work as coming from http://www.apacificview.blogspot.com .  Really gorgeous photos!  And the mousepad is the coveted "soft kind."  The recent trend in unbending shiny mousepads leaves my mouse in an unworkable state.  I literally search for the older type all the time.  I don't have any that are so beautiful; usually they advertise the store where they are found...in ugly colors...

Anyway. A wonderful surprise!!! And wishing a very happy New Year to the creator :)

 One of my friends who also has lupus, more severe than my own, and who has two really wonderful children, lost her husband suddenly.  I didn't even know about this until after the memorial service today, which I would have attended had I read about it in time (my allergy to newspaper ink sometimes makes me miss a lot of important local information.)  

I am sending her my prayers and good thoughts.  I ask for her to have the strength she will need to get through this.  I remember so much when I lost my father at age 6 and what my mom went through then.  My friend could use strength and some good luck for a change...I know she has more than enough intelligence, creativity, and determination.  And no one could love her children more or take better care of them.  She deserves so much better than this and I pray she will have life treat her far more fairly in 2010.

While I am thinking about this I want to also send prayers to my stepfather Gene, who became ill on January 1, 1996 and passed away January 2.  I hope he is now in a better place.

No partying here; in fact I fell asleep instead of eating dinner.  But for some reason I woke up about twenty to midnight!  So I didn't miss ringing in the New Year :)  Even got to see the time-delayed ball drop in New York's Times Square.  Doesn't get any better than that, at least if you are tired and appreciate your nice warm bed.

I don't have my computer back in action yet but it is hopefully on the way soon.  It is home from the computer hospital and dburr  is working on the software reinstall.  I KNEW there was a hardware problem; I knew it; I knew it.  

But I would rather have been wrong.  I'm starting 2010 in serious financial jeopardy and I didn't like having to find several hundred dollars from *somewhere*.  That was a very reduced price I negotiated for...it needed a logic board!  Sheesh!

Hope my computer as well as everyone out there have a happy, prosperous and healthy 2010 :)