Dear Mr. President, Please Let Us Live

I admit to being heartbroken by some of what is both seen and not seen in the Affordable Health Care Act, signed into law by the President and supported by the Obama administration.

Yes, the bill does a lot of good things.  Yes, it is an historic and long-awaited passage of some health care reform.

And the thing about this bill is, even what help it does bring to citizens who are concerned about health care is being vigorously and viciously opposed.  We've got  a harsh climate for efforts to keep the bill from eventually being repealed as well as any hope for making the bill better.  So it is not always easy to criticize those who were involved in the bill's creation.

(But no, I do not think anyone should let the attack dogs keep them from speaking out about what they need and what they think is best for all of the nation's citizens.)

What I did not expect was an attack on Social Security during the Obama administration.  I knew that my own serious problem with the copays and deductibles I need to pay on the Medicare program, which goes with my Social Security Disability, would now continue--and that I would struggle and maybe not survive for this reason.  But I didn't think there was any danger of Social Security itself being in danger right now.

Well, I just wasn't paranoid enough.  Please don't shoot the messenger, but here's the bad news:

http://michaelmoore.com/words/latest-news/whacking-old-folks

I know that a Republican President, with the current incarnation of GOP leaders in charge (who I hope will be getting some complaints at some point from Republicans who have hearts and brains), would be harder on those of us dependent on Social Security.  I also think that a Libertarian would be harsher still. What I want to know is, who would be both sensible and compassionate?  There are a lot more things that could be cut before we stick the knives into the most vulnerable citizens.  Give me the red pencil; I'll do it.  Sheesh.  We are being help captive by some both nasty and incompetent budget-slashers and I for one am getting tired of always having the target painted on my back.

We do have to mobilize, which isn't so easy when you are sick and/or disabled.  I suppose the idea is that others should mobilize for us, but we haven't been getting a whole lot of that lately.

We have to be careful to avoid being labeled as expendable collateral damage in the war against the budget deficit.  By the way, did you bring about that deficit?  Did I?  All by ourselves?  Why are we supposed to feel so guilty for having gotten sick?

I'm in a lot of pain today and my joints in my hands are especially cranky but I'm going to be writing letters anyway.  You know, I'm not asking for an upper-middle-class lifestyle.  I'm asking for survival, for myself and for others who didn't have Lady Luck being a lady in the personal health department.

And Now, For The Nuclear Option...

(Psst...photo is just clouds...no nukes.)

I'm sorry, but I'm going to be randomizing instead of writing...I'm down-to-the-bone exhausted and barely know what year it is. Surprise, surprise, I've had a few more rough weeks in Lupus Land!  My way of celebrating Lupus Awareness Month, woo-hoo!  Let's all join in, and SING!!!  (no. not really. definitely not. please stop singing.)

For some reason, my blood work is really good now. That should be wonderful news, but a lot of us autoimmune types go through icky times when our tests come out great, but yet we still feel like some evil spirit comes to visit us in the night, sucks out all our energy, tears up our muscles, and smashes our bones.  Somehow.  With perfect blood work.  Truly.  As to why, don't know what to tell you.

Lately I've been feeling like I did pre-diagnosis, many years ago: migraines, some problems with memory and concentration, and every time the barometric pressure dips I'm totally disabled by the kind of fatigue that is just on the sharp edge of I-HAVE-TO-SLEEP-NOW...and, also, wicked arthritis.

This week, we had some rain, which I actually love.  Why do I love rain...? Maybe I enjoy having moist conditions to offset the tyranny of Sjogren's Syndrome , and cloudy conditions to keep me from getting sicker from lupus.  My lupus brain involvement gets worse with UV exposure.  It's really peachy, to not have my brain fried. So rain, sure!  Bring it on!

It's just that lately the pre-rain, or even just pre-clouds, have been so horrible for me that I  haven't been able to write all that much...because my painful, swollen hands "Just. Say. No."

I'm trying to plan out our upcoming move. And I don't have $ for movers, and this is really worrying me because I have had to face reality: I cannot pack anything up.  Even with my great blood work.  My hands won't do it.   They are on strike.  They don't care about the blood work.

So, so. Another non-fun thing that happened recently was yet another change in my psychiatric meds.  I've suffered from depression for decades, a condition which often goes with lupus.  More on this here: http://beepbeep.livejournal.com/1128077.html .

A while ago, I was on a high dose of a medication that has a short half-life and a nasty withdrawal syndrome (a syndrome to which I turned out to be very susceptible.)  So every time I had to take a dose of this med late, or miss a dose (like with insurance delays in working things out with the pharmacy--and I KNOW I'm not alone in having stuff like that happen!),  I became violently depressed, like to where I was afraid I might kill myself.  And, I'm told, I was very hard to be around.  So when my doc told me he thought I needed to go off of this med entirely, I agreed.

But as I've been decreasing this antidepressant, I've become more...depressed.  Kind of makes sense?  Added to this is the withdrawal syndrome, where every time I have to make my 37.5 mg "jump" downward, I have dangerous misery for up to a week--sometimes longer.  (Speaking of misery, when I originally was taken down an entire 150 mg at once...it was a living nightmare.)  The 37.5 jump is worlds better than faster reductions but still is a very harsh experience. I've very glad I'm only on 37.5 mg /day total, now.  There will be an end to this withdrawal syndrome, when there is nothing left to withdraw!

However, since I'm slowly getting more and more depressed, another med I take was increased.  This med is described as having some effect on depression.  I'm crossing fingers that it helps.  And crossing my toes.

I was also put on a second med to stabilize mood.  This one can cause weight gain...and what with having had estrogen-responsive cancer, and fatty liver, and left ventricular hypertrophy in the heart, and smaller lung capacity than I should have, and diabetes, and probably some other things I left out, I can't have any more weight gain.  (This is all aside from what obesity for so many years has done to my social life and my self-esteem.)  I haven't fought my way out of prednisone obesity by any means, but was actually starting to lose a little weight, finally, and that made me feel like possibly I might not die in five years from obesity-related problems after all.

Ok. I started the brand-new med on Friday.  It's Tuesday.  And I've gained six pounds.  I'm also swollen, have miserable nausea and queasiness as well as severe stomach pain, and am exhausted from waking up at night choking on whatever I had for dinner.

My long-standing reflux esophagitis has been a difficult case, complicated by good old obesity and also a large hiatal hernia, and I've had to take four omneprazole/day and elevate the head of my bed so my bed as treatments.  I hate doing this; my bed  is so unstable I feel a bit nervous. Oh, I also can't eat too close to bedtime, and...blah blah blah, more stuff.  All so I don't get reflux in my lungs, like I did once and had resulting pneumonia.  All of this means it could be a bad thing for me to keep taking a med that is giving me such GI problems.

Well, my psych doc is out of town.  I had to make an executive decision.  I left him a message.  None of this med tonight. I'm sorry; patient no longer complying.

Maybe the doc can work with my gastro or my endo, or another doc, or a bunch of them and come up with a way I can tolerate this drug.  And that would be fine with me, but for now it is going to have to be a NO.  What this NO will do to the depression, I don't know.

But, I woke up feeling emotionally better today, though exhausted from not getting to sleep thru the night.  I am sure it is that the withdrawal syndrome is starting to fade.  It is a good thing I was more together today than yesterday because I had to drive down to LA and back for my checkup with my gynecologic oncologist.  Because of the rain and slick roads there were some accidents on the freeway and this made the trip longer.  I am so tired I can't get out of bed now.  Dburr will bring a light meal to my bed...bless him.

So, nuclear, at last.  I hadn't forgotten.

I was assured that I don't have a change in the stage of my cancer or anything like that.  But because I had multiple tumors, the recommendation is for me to have some radiation.  This will be internal radiation and I've been referred to radiation specialists in Santa Barbara.

Sometimes I have a problem with showing people how I really feel because I've been through so much in my life that I'm kind of used to unpleasant stuff cropping up.  For example, my psych has trouble believing how severely I get depressed.  He said, "You don't look depressed."

And I know I don't look or act scared right now, either.  My first comment upon hearing the news was actually,  "I hope they (the radiation docs) take Medicare."  And the first worry I expressed out loud to anyone was about the damn copays I don't have the money for.

No, I shouldn't have to worry about every cent with all I go through in life, but I do.  It's like always having to look down a dark tunnel and hope a train isn't coming, and if I think about finances too long I just start to cry.  When I'm alone, that is.  I know that worry like this always makes me sicker but still, to look at me, no one knows that I'm about to collapse from a crushing burden of stress.

So, I don't outwardly show any fear of the nuclear option.  Bring on the nukes.  Take no prisoners.  Big C, you're not welcome here.

But psst...I wouldn't turn down a hug.

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.