And Now, I'm Going To Complain

I haven't been whining (I think) but I'm going to whine now because I am TIRED and IN A HURRY! :)

There were a lot of things I really wanted to get done before surgery on Friday.  There was a photo album I was making for someone I've known for years that I'd hoped to get done by Christmas and couldn't.  There was straightening out where I live so that I won't break my ankle when I get home from surgery.  There was packing a bag FOR the surgery, remembering of course that I need to bring my own everything when I stay in a hospital because I'm allergic to almost all toiletries etc.  There was answering a backlog of email that came about because of the extreme fatigue episodes I am experiencing with a combo of cancer AND lupus.  There were medical records and information to get together to bring to the hospital, stuff to do for the pet crabs and the fish, asking two friends whom I've been helping out with some projects if there was anything they needed before I have the surgery, massive medical debt to re-structure and last-minute bills to pay, I could go on (oh yes I really want to go on and on and on! bleh!!) but guess what?  I don't have time!

I don't have time because Murphy's Law will NOT leave me alone.  Just a few examples...several things around here have suddenly chosen this time to break.  Despite the financial crisis I've had to buy things like replacement lamps and a lot of other stuff I don't have time to list.  One of the big things is my computer, which supposedly has "liquid damage" which Apple doesn't cover.  So I paid for half the cost of a logic board and that was to fix it, but guess what?  It died again.  Now it had to be sent away.  They say Apple will pay the rest but we'll see what Murphy has to say about that.  It's a very bad time for me to be without the computer.  Almost everything I had to do paperwork-wise is now 100x harder.  It's helped that Don put some of my stuff on his laptop temporarily but of course that's only for the next day or two since he needs it back.

Our laptops were bought at the same time.  His is wonderful.  Mine can't seem to function at all.  I WOULD get the lemon instead of the Apple.  If I need a new computer, I'm SOL, never mind that it is pretty much the center of my life.

I had a really painful eye infection which was eliminated by eye drops.  Guess what's baaaaack?  Can I reach the eye doc?  NO!  Can I get refills on the prescription?  Of course not!

Today was my day to catch up and wrap up some of the loose ends.  I knew I couldn't do everything but I could do the essentials.  Tomorrow I have MD appts out of town and then my mom is coming and then I HAVE to pack.  Thursday I take a laxative and have a miserable liquid diet so mom is going to drive me down to the family compound (it's a house that is just my name for it, lol) and I will stay overnight and then my truly sainted family is going to get me to the hospital by 5:15 am Friday.

Well, that was the plan.

So we get our badly-needed rain now, at last.  Except it's not just rain, it's a major storm, being compared to the one in 2005 when yours truly got stuck in LA due to a landslide which blocked the freeway.  The worst is expected for tomorrow and Thursday.  I guess we'll just see how mom and I do on the roads.  I so needed this complication.

And just to make sure that nothing gets done on time whatsoever, I just found out that I was to see my surgeon today, except that I'm not on the books which means no one told me.  I have to go to LA now, so I'll see you on the flip side.  I think I have time to shower and get gas and leave early enough to allow time for the storm.  I think...

I am so tired!

Oh and no.  Dburr can't help me.  He's got a major project for work.  Also, we're talking about CLEANING, here.  He'd rather serve time in San Quentin.

Thank you

To the people helping me financially.  I couldn't even begin to get through this without you.  My insurance-no-pay and over-the-counter medical bills right now would drown just about everybody.  I am indescribably grateful for any help!!!

Update--and some good news

First and foremost: I did hear from the Fellow who is working with my gynecologic oncologist.  As far as the scan shows, the cancer is confined to the uterus.  All I can say is, thank God.  Hoping that when the total hysterectomy happens on the 22nd, the cancer gets removed.  All of it.  It's not paying me rent; eviction time.

I'm still very tired.  I also can't stop bleeding.  This has made for more than one very embarrassing moment.  Can't wait till this little problem is gone for good.  Also, just fyi, it seems there isn't a feminine hygiene product on the market which doesn't become incredibly irritating and even painful if you have to use it ALL THE TIME.

I'm having a lot of trouble getting everything I need to have done ready before the surgery.  My mom came up for the weekend and was a huge help.  But there is still a lot to do so that I don't drown in paperwork or fall over an awful lot of things that are still on the floor when I'm trying to recover.  I wish I could pay for help.  I wish I found gold at the end of a rainbow ;)  LOL.

Ok, back to work.  Where is that shovel?

Lupus Brain, I am so tired of you...

One of the things which happens when I'm experiencing cognitive impairment from lupus is that my short-term memory basically takes a vacation.  One day the sweet guy I live with, D, made a big mistake and erased the phone message of a medical appointment for which I had totally forgotten the time.  I showed up too late to be seen and was charged a fee for the missed appointment.  Also the new appointment was very hard to schedule.  Well D had naturally assumed that with both a computer calendar and a calendar I carry in my purse and the little cards the receptionists give you when you make a medical appointment were more than enough for me to be able to show up on time.  But with lupus brain, I could not remember the time.  I had not written it down in clear handwriting due to an arthritis attack.  I couldn't remember where my appointment card was.  I forgot to enter it on the computer.

Today I came home from an out-of-town dentist appointment very tired and worried about a lot of things I really have to do and was so glad that tomorrow would be a day at home.  Also I wanted to rest before the appointment I made to continue to participate in the study which is now tracking my very low B cell count which was a response to the treatment in the study.

But no one erased the phone messages this time.  It seems I have one appointment out of town tomorrow and one in a different city from the study appointment on Thursday.  I don't know how this is going to sort out but at least I now know I screwed up.  My memory?  Totally blank on all of the appointments.  If they weren't written down I wouldn't remember any of them.  Admittedly I have a lot more medical appointments than most people and it is relatively easy to make mistakes.  But it's the lupus brain stuff, when I have it going on, that just wipes the memory slate and leaves me without a clue regarding where I'm supposed to be when.

I used to worry, when I was in my twenties, that I had Alzheimer's...except mine comes and goes...

Waiting waiting waiting, money woes, and cancer vs. lupus

I'm waiting to hear back from the tests I had done on Saturday.  I got a mammogram and a pelvic ultrasound and an abdominal MRI scan.  This will provide more info about the uterine cancer and where it is.  The bleeding continues.  Buy stock in feminine hygiene products; you heard it here first.  I seem to be needing to purchase all of them, and all the time.  On my credit card.  Sigh. A constant reminder that I have cancer that needs to be evicted from my body.  It doesn't pay me rent or anything useful like that.  Get it out. Now.  Or yesterday.

Anyway...I'm getting a bit nervous.  Waiting is stressful.  I'm trying to put the whole scary how-far-has-this-cancer-gone thing out of my mind.  There is a lot I have to try and get done before the surgery and I'm focusing on that.  I'm also suffering from severe fatigue, the kind where you fall asleep in the middle of eating dinner, and that really is limiting the time I need to get anything done.

My biggest non-physical anxiety right now is financial...paying for the medical stuff I need.  I had to spend way too much on over-the-counter stuff and copays and travel to medical facilities last year,  with a large credit card balance as a result. The cancer has only increased the medical spending.  I am permitted to receive help with medical stuff if it is structured properly.  My mom and Don have helped me often, and others have helped me also when and in ways that they can.  I am so grateful to all.

But my major donors, Mom and Don, are experiencing significant financial strain themselves now.  Neither of them should be having me as their burden.  Mom is a lot older than she looks!  and Don is legally blind, having severely limited vision, and has no savings, not even for retirement.  He also is facing a work slowdown in the near future, and is only getting part of the salary he used to have before he was laid off during the "Great Layoffs of Late '08".

Others who have helped me in the past have now lost their jobs or have other crises of their own.  Thank you, The Great Recession.  Of course my benefits continue to be cut, especially here in California, where the governor is seeking a special waiver to be able to reduce Medi-Cal (California's Medicaid) spending to an even lower amount than the federally mandated minimum.  He had other options, but is choosing, basically, to kill people.  It's hard to take.

The folks who make policy are aware that someone in my position can't add to their income, not only due to severe illness and Social Security Disability rules for SSDI, but also due to the way Medicare Part D was structured (with significant input from the pharmaceutical companies.)  Now that I will most likely lose Medi-Cal eligibility entirely (recently I ended up being eligible only every other month)  I'll have the 20% Medicare copays to deal with.  I already have to pay the Medicare deductible, as well as the premium for Part B, which used to be covered by the state.  My medical expenses could thus easily exceed my total income.

The policymakers by and large don't really care, at least some of those who proudly call themselves fiscally conservative.  "Fiscally conservative" didn't always mean that letting fellow citizens die is ok, but then again I'm old enough to remember when there were people around who would tell me that back in the day they "Liked Ike!"

In a country where 45,000 people per year die due to lack of good access to health care, why should the New Right care if the number becomes 45,001 when I  get my notice that I'm just collateral damage in the budget wars?  Although politicians have been willing to rack up the deficit for things they consider to be important, like bonuses for the executives of failed companies, controversial wars, tax breaks for corporations who are already almost drowning in profits such as oil companies, etc., some seem to consider sick people to be expendable.

Anyway, I'm up shit creek financially and am reduced to begging.  It is embarrassing, humiliating, guilt-inducing and sometimes I just want to give up and let the consequences of not being cared about by my country happen.  But then I think about the individual politicians I have heard or seen who have come right out and said that people like me who are expensive medically should just go ahead and die.   Like WE were responsible for the absurdly high cost of medical care in this country.

When I think about just myself I still feel like I'm just a throw-away human, due to rock-bottom low self-esteem, but when I think about others in my position it is then that I get angry.  How dare they try to calculate the value of a life based on income received in a bat-shit crazy economic system?  What is the value of a loving person, a giving person, a voice for positive change, an advocate for those who don't have money, someone who has a low income due to wanting to help others rather than make profits, someone who is a sunny presence in a home? What about the person in a family or neighborhood that everyone around talks to as if they were an unpaid counselor, or the creative person who brings art and beauty to our lives, or children who don't make money but who are our future, or seniors with so much history and wisdom to impart which don't make money but enrich or knowledge and understanding...the list goes on and on.  If you don't know that a human being is more than just dollars and cents, you have a personality disorder.  Please excuse yourself from making public policy.

And I also remember the pond scum, I mean, the people, who have told me I SHOULD die rather than use a dime of their precious tax money to stay alive.  As if they could have made any money at all without the public goods they use every day, provided by the aggregate of everyone who pays taxes, including we poor people who still pay sales taxes and often disproportionate income tax.  Well, then I want to live just to spite them,  and be alive to advocate for more compassion as well as more common sense, and tell them to stop whining  *like they tell us to do*   and...suck it up.

I'm tired of blatant selfishness, greed, and narcissism, often in the name of Christianity, believe it or not.  And yes I know people are  working very  hard, in many cases too hard because the economy is totally screwed up--but you know, I would give an awful lot to be able to work hard, without collapsing from illness and/or losing my health coverage.

I'm experiencing a lot more sympathy and caring from people now that I have cancer, and I really appreciate all of it...and actually NEED it to get through this.  It feels like too much for me on top of all the other health problems I have.

But as is discussed so often in support group meetings for autoimmune disease, those of us with lupus et. al. are often expected to function just as we would if we were not horribly sick.  And we wonder why what we are going through does not generate much sympathy or support.

There are some reasons for this.  Like cancer, lupus is an invisible disease in many ways, but unlike cancer, it is still not as well known.  Lupus does not usually have hugely funded public information campaigns or massive fundraising efforts that get wide media coverage.  Lupus also varies from person to person and even a single patient has good days and bad days.  This means that people have to do something that in our culture is very difficult: to believe the patient and trust that they are not malingering or using the illness to get attention, sympathy, disability payments that are not justified, etc.

We don't trust each other anymore.  We suspect fraud and deception almost unconsciously.  Even a small amount of fraud often gets massive newspaper headlines and this makes people justifiably angry. There aren't huge headlines talking about morbidity or even much about mortality from lupus or other invisible disabilities.  We also are convinced there are a lot of self-centered people claiming illness to get attention.  Well, for one thing, see above---autoimmune disease still doesn't generate a whole lot of community concern.  And I do NOT have Munchausen Syndrome.  I can easily think of many more enjoyable and far less costly things to do than wait around in uncomfortable rooms with other sick people and then be examined by health professionals.  I think of those license plate holders like "I'd rather be sailing."  Well, I'd rather be (insert 1000+ things here.)

Lupus can have many different symptoms which change from day to day and which vary so much between patients that it is almost as if each patient has a different disease..  Other rheumatic/autoimmune diseases are often like this as well.  If someone knows of a person with a mild case, the expectations placed on someone with a severe case may well be completely unrealistic, but completely unknown to the person who is viewing the patient with a critical eye.

I will admit that I haven't had an easy time over the years in part because my sister has a (so far; please cross fingers, send good thoughts, pray for her) mild case of lupus and is also one of the hardest workers on the planet.  There have been many comparisons, I assure you, between the one sister who is successful in so many life areas, a true superwoman, and the other fat thing living on disability payments as partially living off of other people who can't really afford it, such as my mom and Don.  (And my sister who has lupus and her husband bought me a car--and if they hadn't, I would be in a world of trouble right now.  Should they have HAD to do this? No way.  My sis needs to take care of her family and her own health.)  Of course by the inevitable comparison I look like...a selfish, lazy, unmotivated moocher who needs a big dose of the "Tough Love" which would most likely actually kill me.

The severe prejudice against overweight people does not help.  Weight as a side effect from prednisone also varies from patient to patient, and even some physicians are still seemingly unaware of how the drug can not only increase appetite but affect the metabolism which remains affected despite attempts to diet and exercise.  There are actually many in the medical field who are violently prejudiced against their overweight patients.  I was shocked to see some of their comments once on a New York Times forum.  "They get diabetes and liver problems and some cancers, and heart disease (I'm guilty on the first three; my heart disease has not yet been somehow related to obesity) and expect me to treat them when they won't even lose the weight; I'm sick of the sight of them."  The fact that over 90% of diets fail escapes them.  And exercise can be problematic for the ill or disabled or overworked with little leisure time.

I learned that I personally start losing weight when I go down to a level of 600 calories per day.   And that left me so tired that I was fainting in public.  I am the one who has to drive myself to all the medical stuff and I can't be passing out at the wheel.  Also, the diabetes and possible liver disease and the anemia don't fare so well on 600 calories.  I can't do it; it's not safe for me.  I have to exercise and with the wicked arthritis the exercise that gets my heart rate up is swimming, which means access to a pool that is not so crowded as to be a severe danger to someone with immunosuppression.  If someone can solve this problem, I'm all ears.  Where I live right now I have access to a pool but I'm not sure what I will do if I move.  And for most of my life I simply could not afford such access.

The tendency to make appearance-based judgements harms patients with mild disease as well as patients with severe disease.  Patients with severe disease are encouraged or in some cases actually forced to push themselves beyond what is good for their health.  In the US, where work is so highly valued, I frankly think most of us with severe disease are internally driven by sheer guilt to achieve activity levels far beyond what is safe for our disease state--often with the result of making the disease worse.  Did I do this to myself, out of guilt for not succeeding the way I had hoped and planned to and promised I would do in my life?  Oh, God. You betcha.  I went to dangerous extremes and risked my life more than once.

As for those with mild disease, the praise they receive for their level of achievement and their own sense of accomplishment despite the diagnosis can easily tempt them into a lack of respect for the disease and what it COULD do.  So they can fall into a pattern of overwork, ignoring precautions such as avoiding sun exposure for the photosensitive, skipping regular medical monitoring, skipping the rest periods they need, etc.  And they can also end up making their disease worse, even sometimes crossing the border into severe disease.  I've seen this happen over the years, so many times, as a support group leader.  I've seen people die due to forgetting that lupus is nothing to fool around with.

So what to do with people who are suddenly being caring of me, who weren't so all the years that I was struggling physically, financially, and even emotionally due to receiving so many harsh judgements of my basic character?  Right now I'm just gratefully accepting any kindness offered to me.  I believe in forgive and forget.

But that may not be the best thing for public education about just how nasty autoimmune disease can get.  As someone said to me about one of the people now being kind and gentle with me, "Where have they been all these years?"

I've seem this happen to other patients who receive an additional diagnosis which the public understands far more than autoimmune illness, as well as those who suffer injuries.  Often someone will come to a group meeting and laugh and say something like "well now that I have a cast on my right arm everyone is rushing to help me, when it's the arthritis in my left shoulder that is producing the true agony which makes a few twinges from the injured arm seem like: NOTHING!"

Just points to ponder as I get ready to go to the dentist.  An additional bill I will not be able to pay, not covered at all by my Medicare despite my really wicked case of Sjogren's Syndrome and having very weak teeth as a result of being a tetracycline baby.

Just another day in the USA.