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.

Waiting for Godot, I mean surgery date

I've got one of those migraines of major doom.  It started yesterday.  It responded to Maxalt for some time but then returned.  After three Maxalts I realized it would just keep boomeranging.  I then took hydromorphone for the pain, as I am instructed to do.  With my liver pain and liver enzymes elevated I didn't want to try Vicodin first as I usually do, since the liver doesn't care for the acetaminophen in Vicodin.  People forget how hepatotoxic Tylenol can be...

I'm trying very hard not to take anything narcotic today because I really need to go to the post office to pay for my support group's PO box before year-end, pay a bill at the bank, and get some food that I can eat without totally spitting on one of my medical diets.  But I haven't had a break in the migraine action long enough to feel safe driving even sans pain meds.  I've been getting vertigo along with the nightmare pain.  This thing basically has got to go.

Anyway.  When asking about my preop appt. I found out my surgery is going to have to be pushed back due to a change in the doctor's schedule.  So I no longer know my surgery date.  I will still have tests in LA on the 2nd.  I know the surgery will be at the very least a total hysterectomy with ovaries et. al. removed.  I'm hoping it can be done laparoscopically due to my poor wound healing from immunosuppressive treatment for lupus as well as the diabetes.  The tests on the 2nd will have some bearing on whether this is possible.

I really want to be held and kissed and comforted.  But I've always been really stoic, at least on the outside, and I don't know if people really know that inside I'm an emotional vulnerable lonely gullible soft thing.

On the outside I can joke about adversity (having become somewhat used to it) and kick ass when I have to (an outer personality change that was painful and took a very long time but was totally necessary for survival starting with fighting for the diagnosis of my mystery disease, not hypochondria but: lupus.)

I didn't realize I had quite so many of the risk factors for this endometrial cancer of the uterus.  I knew I was high-risk but not, I guess, megahigh risk!  It all has to do with how much exposure to estrogen one has.

My collection of the risk factors include:  starting my periods before age 12, never having been pregnant, irregular or possibly even no ovulation after starting Cell Cept for lupus treatment in 1997, diabetes, obesity (thank you so much, prednisone.  Oh yes, you are life-saving in lupus, but you come with quite a price in side effects), possible PCOS .

I'm really glad my new gynecologist did a biopsy of the uterus instead of relying on my normal PAP smear.  PAP is for cancer of the cervix, not the endometrium of the uterus.

Why won't this migraine GO AWAY?  I need to do laundry and answer a backlog of email.  This is so frustrating.  Vamoose, migraine!  Abracadabra!

No, I wouldn't say this was the best day I've ever had

It has been kind of one of those days which started a bit icky and then worked its way up to kind of a grande finale of yuk.

I woke up too early because an alarm clock went off too early.  And when I don't get enough sleep I do not feel well.  My fibromyalgia is a LOT better since I've been on Savella, so the day wasn't spent in a useless debilitating agony of pain, but I was achy and tired and a migraine threatened.

I first discovered, via the computer, that a dear friend of mine who has been working at a scientific facility for a long time now faces that facility's eventual closure, and not even for the most intelligent of reasons.

Then I went to an event and noticed that I really could not see up close, and had a lot of fluid in my eyes (a bit unusual for someone who has been going through a really really really really long flare of Sjogren's Syndrome) and the eyes stung, and so I think I've got pinkeye back again...and have no more antibiotic drops.

Then I was unavoidably late for an appointment with someone (support-group related logistic stuff) whom I am sure did not appreciate it.  Afterwards I went to get a cold drink at a drive-thru and got trapped in The Line That Took So Long I Turned My Gas Off And Sat There.  While sitting, I realized I did not have my cell phone.  So I went back to the event I had been to at the beginning of my rounds, and tried to find it.  The people there even called the number for me.  No cell phone.


I had hurt my knee just while I was driving today (sometimes avoiding the holiday desperados is a split-second thing while they run red lights and otherwise indicate they are running short of shopping time before Christmas) and had a bit of trouble limping back to the car.  That's when the migraine started to show up.  And the really blurry stuff in my eyes.

I hoped for an easy drive but almost hit something which dashed out suddenly into the street.  A black cat, crossing my path.  I had dressed for the cold air but was dying of heat prostration when I got back to the car.  And my old buddy, The Giver Of UV Light (UV light makes me sick), was shining extremely brightly right straight into my sore eyes; no way to avoid it in the direction I was headed.  A lovely lupus rash began to show up.  Wonderful...

By now I was just hoping my cell phone was at home because that was where I was most certainly going.

I got home and some luck!  Cell phone was here!  But I also then noticed that liver-area pain was back.  Too many vital organs being cranky at once.  You know, I sometimes get a bit concerned about all this health wackiness.  But, oh well.  FINALLY I hoped to be actually able to do the Christmas letter and get my cards out, not on time, but at least before Christmas.  The past "Medical Test Fortnight" being over with at last.

Got a phone call.  It was my gyn doc.  You would think I would have figured it out immediately, but that is how tired I am.  Also, how many times (countless) have I been told "your biopsy came back negative..."

Well, this one didn't come back negative.   Guess the roulette wheel had to go from black to red someday.

My ex-gyn, who dumped me for insurance reasons and told me my bleeding problems were no emergency, was mistaken.  I'm glad my new, cheery motto, "Trust No One," popped into my head and motivated me to fight my way past unreachable triage nurses and other ilk to get an appt. with my new gyn.

I have endometrial cancer.  Looks like probably in an early stage, so I'm not ordering a casket.  They will biopsy my lymph nodes to check that part out when I have surgery.  I obviously do need a hysterectomy, as soon as it can be scheduled.

My concern is that with immunosuppression, lung crankiness, a heart problem, liver doing ?, obesity, lupus et. al., I'm not a good candidate for surgery, but hopefully someone will feel confident taking on a patient who is a little more complex than most.  I'm certainly not taking out my own uterus.  Do-it-yourself medicine has its limits.

Another notch on the bedpost...? Liver disease!

Some people collect notches on their bedposts to represent the different persons with whom they have, um, shared their bed.  That wouldn't make a very impressive collection for me, so if I were to bother with notches they really should be for every new diagnosis I get of something wrong with me.  Now my liver is shooting pain signals at me and abnormal enzyme levels to the blood lab and produced an abnormal ultrasound as well.  Yes, liver, I hear you screaming "Me! Me! My turn!  Me me me!!!!"

More later, as it's time to take the car in.  Ultrasounds are not supposed to hurt for days after, but the liver didn't like being poked.  Not sure I feel like doing more driving.  Been driving a LOT...to medical appts. out of town, not holiday parties or anything cool like that!  Not that many parties are being given during the Great Recession, anyway.  I wanted a holiday party, so I gave my own on the 6th!  Take THAT, powers of darkness!  So there!

Important Patient Conference In Santa Barbara, CA

If you can attend, I highly recommend hearing these two doctors speak.  You can look up one of them, Dr. Daniel Wallace, at http://www.danieljwallace.com/ and see the books he has authored at http://www.danieljwallace.com/Books.html .

Note: please RSVP to attend.  Info:

Santa Barbara Patient Conference

Saturday, December 12, 2009

1:00pm – 4:00pm

Earl Warren Showgrounds

Warren Hall

3400 Calle Real

Santa Barbara, CA 91305

Lupus LA is pleased to announce its Santa Barbara Patient Conference.  Patients from Santa Barbara and surrounding counties will have the opportunity to hear from two of the top rheumatologists in Southern California:  Dr. Timothy Spiegel and Dr. Daniel Wallace.  Participants will also be able to submit questions about Lupus, Sjögren’s Syndrome, Raynaud’s Syndrome, Fibromyalgia and other rheumatic diseases and hear answers from the experts. 

1:00pm – Registration

1:15pm – Welcome

1:30pm – Problem Diagnosis: How we diagnose lupus and

        distinguish it from other similar diseases

        Dr. Timothy Spiegel

2:00pm – New Advances in Lupus Treatment

        Dr. Daniel Wallace

2:30pm – Ask the Experts: Question and Answer Session

This conference is free of charge and open to the public.  To register for this event, please email or call Lupus LA at info@lupusla.org or (310) 657-5667.  Visit our website, www.lupusla.org, for more information about our programs and events.