Where I've Been

August was really busy because I moved, and of course the physical part of moving was an exhausting daily project. And I'm not finished with it yet!

At the end of August, I developed a GI problem. Diarrhea, usually severe, as well as nausea and vomiting. Daily.

I must have been very ill, because I even lost weight, something that just doesn't happen to me since prednisone packed on the pounds years ago. I can be at death's door, refusing food, and still my body is convinced that fat must be preserved for an imaginary famine.

Anyway, this mystery thing made me very sick, and very weak. I had quite a few falls. I cracked my ribs. I may still have a jaw injury to deal with.

I could only survive on enough OTC Imodium to most likely raise the stock price of it, as well as prescription ondandsetron. I saw several doctors, and was seen in ERs several times as well.

My genius rheumatologist seems to have thrown a lightning bolt to the thing, improving me enough to give me my life back. I was surprised, since this is out of his specialty area. I saw him December 9 and have been working on catching up with months worth of communications and responsibilities ever since! Dr. Wallace had better not retire during my lifetime, is all I can say,

Looks like I might be able to make a blog entry once in awhile, now :)

Christmas List

I'm not really writing this to plug my Amazon wish list ;)

At my age and income level, lists like this are more a useful reminder for me, for use IF a day ever shows up when I have any extra $ to spend frivolously!

What with deductibles, copays, over-the-counter health care stuff, and trying to live on disability income, in a political climate which is getting harsher and harsher for folks like me... I'm not counting on a windfall.

Ah, well.  Sometimes it feels like Scrooge will never get the visits from the three spirits in my lifetime.  I often feel crushed by a heavy weight not of my own making.  When did I ask to get sick?  or for medical care to be so expensive, or for the medical insurance system I live under to exclude me from the middle-class economy?

Anyway,  another list. I've had at least three major diagnoses in my own Christmases past.  One was SLE on December 24, 1985.  One was diabetes on December 26, 2008.  And one was uterine cancer on December 16, 2009.

Christmas gratitude:  I'm still here :)

Thank you, Santa, doctors, scientists, taxpayers, family, friends, luck, and my personal loving God.  What a beautiful gift.

Happy holidays to everyone!

from freedigitalphotos.net

Christmas sphere, photographer Idea Go

Dear Stubborn Five-day Migraine,

I will enjoy the Christmas season despite you.  I've certainly ignored far worse health stuff at Christmas.  You are just amateur misery.  Suck it up.

I am so tired I am about to drop

Except the problem is...I did drop.  This entry is a reminder to myself to talk about this when I've had at least some sleep or a coffee or something.  In the meantime, be careful out there.  Avoid falls.

Resucing My Brain, And Drugwatch.com

I've had a terrible time lately with memory and concentration problems.  These have been typical for me over the course of the years with lupus cognitive impairment.  However, all of my autoimmune-related blood work is actually really really good at the moment...good enough to have me wondering if my lab report got switched with someone else's!  Not that I believe the tests we currently have available are always accurate monitors of lupus activity.  Big NO there! :)


But this current problem with cognition just kind of "feels different" from what I have unfortunately had to become used to with SLE.  It is actually a different sensation that I seem to feel inside my head.  I don't go around describing this sort of thing much because I don't want to get locked up in a psych ward.  I have this horrific fear of going to a psych ward and having to explain my problem with fluorescent lighting, and then being assigned to a floor where at least one person thinks he the Antichrist, Hitler, Napoleon, George III.  Or Rush Limbaugh.


Slowly and inefficiently, due to the fact that the researcher here is also the one having the brain problem (I smell irony there; does anyone else?) I've been trying to find out what could be going on in my head besides lupus.  I had the cancer surgery in January, and am aware that there has been discussion in the past about possible long-term effects of anesthesia upon cognitive function, although the focus has been mainly on the elderly.

I'm also in the process of learning about the effects of surgical menopause, which include possible cognitive dysfunction related to the loss of estrogen.


Lastly, I want to mention that although I am a long-term migraineur, I have been avoiding taking the drug Topamax due to its reputation regarding possible effects upon memory and cognition.  Quote of the day:  "If you don't have a temporal lobe dysfunction or problems with other parts of your brain that Topamax hits, or you're at the wrong dosage, it will make you dumber than a box of rocks."

After all that I have been through with lupus brain involvement, I just didn't want to potentially add to that particular set of problems in any way, and risk becoming more rocklike.  So I've been sort of skirting around Topamax, trying a lot of other medications for migraine control and treatment, even though Topamax helped a close family member and therefore might be a drug which would reduce my migraine frequency.


And lo and behold, I learned tonight that a medication I recently started, a mood stabilizer, has some things in common with Topamax.  Aha! Eureka!  But it turns out that it is not recommended suddenly stop this med, so now what do I do?  "MAKE AN APPT WITH NEURO" may need to be printed out on a sheet of paper and stuck on my door (I have to leave this room sometime, and then I will see it!)  Because now the differential diagnosis for my half-dead brain is very very complicated.


Usually when I write, words just pour out.  Whether they are interesting or make any sense I can't always say :) but at least the process is pretty effortless.  But no longer.  It is hard to get through a paragraph without going blank at some point while writing it.  And so writing is no longer one of my greatest pleasures and also, since I now find proofreading almost impossible (formerly probably one of my few stellar skills) I have no clue whether what I have written is readable.  I'm actually lucky that I caught myself when I was about to post this on the wrong blog!

For the problems with writing, speaking, concentrating, remembering, making sense, and many other reasons...finding out what the heck is going on upstairs, you know, that place under my hair--is really really REALLY important to me.


So I want to thank this website: http://www.drugwatch.com  *.  This is where I learned more about my new medication.  The site has a wealth of information which could be crucial knowledge for anyone taking medication.  Although I certainly am grateful to be living in an era where "better living through chemistry" has even saved some of our lives -- pharmaceuticals are still complex things. And those of us taking a lot of medications which have never been studied in our particular combination, and who see multiple specialists, often end up needing to be doing some of our own research.  Websites are certainly the cornerstone of this often homebound, impecunious chronic disease patient's ability to do research.

The more people we have looking out for those of us who have little choice but to be guinea pigs, the better, IMHO.


Speaking of looking out for anyone, please volunteer to proofread this and tell me where I screwed up by emailng me at smlupus at gmail dot com :)



* FYI, Drugwatch.com is a comprehensive website featuring information about prescription medications that are available or were previously available worldwide.  Currently, Drugwatch is campaigning to spread awareness about Accutane Side Effects, which can include Crohn’s Disease, Ulcerative Colitis, birth defects and severe liver damage.

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.

Lupus and Fibromyalgia Awareness

photo by my friend Scott Vahey

(the lupus symbol is the butterfly)

I'm still so used to Lupus Awareness Month being in October, when my birthday is.  Now it is in May.  My sister, who has lupus also, was born in May. But I don't intend to pass the torch!  Her disease is milder than mine and I want it to stay that way!

I wanted to do a comprehensive post on lupus, and I still might.  But World Lupus Day is May 10 of every year, and today is May 11, so I missed that deadline.  Guess what got in the way of me being on time?  Lupus!  and, probably, some painful fibromyalgia as well.

I'm doing great according to my blood work.  Just like my pre-diagnosis state, although the ANA test wasn't available then.  Come to think of it, I don't have my ANA test results yet.  Better ask for them.  Note to self.

Anyway, blood tests aside, I've been having some nasty joint pains, some I-just-hit-a-wall-and-that's-all-I-can-get-done-today fatigue, some I-just-got-out-of-bed-today-and-now-I'm-going-back-in-it fatigue,  and joint pain, pain on breathing, bad headache, etc.  I've also got hot flashes and night sweats which I assume are gifts from surgical menopause.  At least when you have a total hysterectomy for cancer you don't go around saying "Should I have had the hysterectomy? Was it a mistake?"  No mistake here.

I am going to take a shower and have some tea with actual caffeine in it, and shake my wet hair a few times like a dog, to get myself into a more alert state so I can lead tonight's local monthly support group meeting for lupus and rheumatic diseases.  So I'm just going to cheat and post some links here instead of writing something useful about autoimmune/rheumatic diseases...at least for right now.

I'm trying to teach myself that excellent is not always necessary; "just ok" can be ok :)  At least when you are sick for a good portion of your time, just ok had better be ok!  Tell them that's all they are going to get because you are sick, and tired!  So there! :)

(this assertive moment brought to you by...prednisone? Heh.  Inside joke.)

Linkies:

World Lupus Day

Fibromyalgia Awareness Day

Fibromyalgia, Mayo Clinic

Lupus Awareness Month Flyer (hey at least I did a flyer!)

Lupus Awareness Month, Lupus Foundation of Northern California  (they sponsor my support group)

Lupus Awareness Month, Lupus Foundation of America

Lupus Awareness Month, Cure4Lupus.org

About Lupus, LupusLA

Beep's Lupus Links

Beep's Autoimmune Room (under construction)

But You Don't Look Sick Dot Com

Lupus Support Group, Physician-Mediated

Fibromyalgia Support Group, Physician-Mediated

more later...!

Difficult Things To Cope With If One Has Lupus, #45903

I still have such a problem with being misjudged...and there are so many aspects to it that even if I didn't have lupus brain going on sometimes I would be overwhelmed.

We are supposed to be mind-readers.  To be able to tell which people want more information about what is really going on with us, and at which times...and which people, and when, don't want to hear another word about our ailments.

But one problem is that if we DON'T explain...then we can get misjudged. Lazy, crazy, stupid, unreliable, unmotivated, not trying hard enough.  Whiny, moody, bitchy, self-centered.  The list just goes on and on.

And then if you are one of us lucky ones to have some episodic brain involvement, and maybe this can make you language-impaired at times...how to explain all this in just the right amount and with just the right words, in perfect sync with the person(s) you are trying to relate to...?

And then there are things like irritability and depression.  I have to apologize here and now to the many many people in service positions I have exploded at...because I was in horrific pain and there was no one else to go to the pharmacy or the grocery store or wherever for me, and my frustration threshold was below zero.  No, no one should be out trying to function with severe pain or nausea or etc.  But I think those of us who are sick the way I am become isolated so there is not much social support.

Depression is ill-tolerated by many people.  I get exhausted now just thinking about how many I have tried to get to understand that sometimes it is brain chemicals.  Anti-self antibodies DO cross the blood-brain barrier.  And then there are the mood altering effects of medications like prednisone.  Some of us are running really hard most of the time to remain in place and guess what, sometimes we can't keep it up.  And I didn't even mention the depressing effects of having one's life changed in so many ways by ill health and invisible disability.  Sometimes I want a t-shirt which says CUT ME SOME SLACK.  But most of the time I just feel despair when I think of the gap between what I know to be my experience...and what I know to be how hard I am trying, all the time...and what people think of me and my "negative", "eeyore" moods.   Even when I'm not depressed the chasm between my reality and their misjudgements of me can be so great that I just want to give up even trying to bridge it.  Hate me if you will; I'm too tired to defend myself.

So isolation becomes a problem but also in some ways a solution.  Isolated...because people get tired of us.  Or they don't believe us when we say it is the disease(s).  Isolated...because we are afraid of being hurt again, of being misunderstood again, of being misjudged again, of being hated again.  And so we give up on people.  Or on life.

Between my current flare of lupus and the chaos surrounding the brand spanking new US health care reform bill...

I'm ready to drop.

All I could put together tonight is here. Forgive me!

I'm only awake now thanks to prednisone-caused insomnia...doesn't mean I'm coherent...

There is little time. Please take the few minutes needed NOW to improve the federal health care bill.

Please go here and save the day!  It's up to us, now.
http://beepbeep.livejournal.com/1119845.html

Alliance For Lupus Research Video: Faces Of Lupus II

Dear family and friends,

I've been asked to pass on this latest video about lupus from the Alliance For Lupus Research (http://www.lupusresearch.org/ .)

Lupus is still in desperate need of publicity in order to raise awareness of the disease, which would:


* encourage early diagnosis which is associated with better disease outcomes


* make life easier for those of us who already have the disease (and to help us be better understood by others whom we encounter in life)


* raise badly needed funds for research.

I know there are people with lupus who will want to share this video with others.  


But if you do not have lupus, and if you would still take a moment to watch this video and pass it on to anyplace people might view it, or to anyone whom you think would benefit from watching it...then you are doing something to help a patient population which doesn't, in general, receive a great deal of help.  


Thank you so much for this.

http://www.youtube.com/watch?v=vK4shDU5Ljo

Love and peace
Pam
diagnosed with lupus in 1985

LFA's Lupus Advocacy Day March 16, 2010

The Lupus Foundation of America is sponsoring an Advocacy Day on March 16.

The website for the event is HERE and lets you know what to do to get involved.



In my opinion, the website makes a strong case for why we should all be participating--along with those who care about us who have lupus!
Quoted from the site:

If you can’t join us on Capitol Hill for LFA’s Advocacy Day, there are still lots of ways you can band together for lupus and make your voice heard.

Tell Congress We Need Increased Federal Funding to Bridge the Gaps in Lupus Research, Awareness, and Education. Here's Why. It has been 51 years since the U.S. Food and Drug Administration approved a drug for lupus. Current therapies have unacceptable side effects that can be worse than the disease. Research has consistently shown that 80 percent of young women say they know little or nothing about lupus. According to surveys of people with lupus they experience symptoms for four years and visit three or more doctors before receiving an accurate diagnosis of lupus. Early diagnosis is critical to preventing the life-threatening consequences of the disease."

Lupus Walk In Los Angeles September 2010

I have very mixed feelings about "lupus walk" fundraisers because I see patients who shouldn't be in the sun, who are very weak, or who are otherwise not suited to participate, force themselves to do something which harms them just because it is one of the few opportunities to raise money for this underfunded cause.

But if people who can safely walk would do so (or maybe someone would do so FOR us?) then the walks do certainly help raise awareness of lupus as well as badly needed funds.

Info:

Walk For Lupus Now
sponsored by the Lupus Foundation of America
Saturday, September 25, 2010
Exposition Park
details on website HERE

Remember "do not stop taking corticosteroids abruptly?

I always wondered what would happen in a natural disaster, with so many of us who are on medications which cannot be stopped abruptly on rigid no-margin-for-extra renewal schedules imposed upon us by our insurance coverage.  How would we get the medicines we need in a hurry?  I have more than one which cannot be stopped on a dime, so I assume I would get very sick and/or die.  Admittedly, this bothers me a good deal.

Recently I haven't been getting my own meds together.  I have a lot of them and post-cancer-surgery I wasn't up to counting them all out.

A few days ago I started to feel quite sick.  I wondered why it seemed like arthritis in every joint was flaring up badly and also I had so much pain with breathing.  My asthma flared up also, and I was wheezing, which could just be seasonal.  But I was also very tired.  I was so confused that I was worried I was having some long-term dementia from the anesthesia used on me on Jan 22 for surgery.

Yesterday I woke up to a rush-to-the-bathroom for vomiting.  I even vomited after breakfast.  I got sicker the rest of the day and thought I either had vomited all of my meds and thus skipped doses, or were coming down with a virus that somehow caused intolerable joint pain as one of its symptoms, or if I were having a very sudden flare of lupus with an unknown cause.

I got even sicker throughout the evening.  Symptoms:  severe pain in many joints, severe pain with breathing, headache, a feeling of being totally exhausted, nausea, chills, weakness, dizziness, loss of appetite.  I could only pick at a truly amazing homemade meal.  I shivered through the Oscars, except when I was having a major hot flash, which have been showing up since my ovaries were removed.  I was impaired everywhere but my hands were almost useless and I couldn't type answers to my email, let alone do a blog entry.

I woke up this morning far worse.  I thought my right hand was injured since it was so painful and swollen.  My left hand was a bit better but not much better.  There are joints in the body from head to toe and I knew where they all were since they were all screaming at me.  I've felt this way before and I remembered one particular stretch of time before my diagnosis of rheumatoid arthritis, later changed to lupus.

Since I was so tired I took a nap after a small breakfast.  I eat when I'm not hungry when I have to take meds which have to be taken with food.


When I napped I had a dream that I had been given no prednisone and that was why I was feeling so sick.  It was an odd thing to dream of so when I woke up I checked where my meds were being kept just for the heck of it.  This was no easy feat with almost useless hands, but when I got through all the bottles:  no prednisone.

I called the pharmacy to renew and sent my poor visiting mom out in the cold to get the med (I am not yet cleared to drive post-surgery.)  When the med arrived there were not many pills and those only 5 mg.  So I took 20.  I also emailed my rheumatologist.  His office then called in a prescription for more pills and so I was able to take 10 more mg.

I began to feel a lot better.  Mind you, I still feel like crap, and have a long list of miserable symptoms.  My hands still hurt (although no longer useless), as do other places.   But I am not in what truly seemed like some kind of mortal agony before death.

Of course, this being me on prednisone, I immediately experienced the severe emotional lability which many of my fellow lupies also are unlucky enough to have as a side effect with steroids.  Managed to have upsetting communications with two different people as a result.  Thank goodness I don't work at the UN.  Explains why I don't have a lot of friends left, too :*(

Mom and Don went out tonight to get the new prednisone prescription.  The pharmacy gave Don a bag of pills and then slammed their shutter down in his face announcing their closure.  When they got back home, I checked the bag.  Several medications I had renewed last week.  But no prednisone.


Hope my pharmacy enjoys phone calls from moody hyper borderline-hysterical bitches on prednisone, at 8 am when they open.  I am being taken to LA tomorrow for a postop so they had better solve this fast.

Tonight mom noticed that where I had pulled off some tape holding gauze in place over stitches put in at my primary care doc's last Thursday (where he removed an extremely painful boil that would not go away for months), there are a lot of small and very dark purple spots. Special.

I am wired from the steroids, but still sooooo tired.

I don't have words to describe how awful my recent days have been and how scary this whole drama still is.  Kids, do not try this at home.  Don't mess with prednisone.

The Price For This Migraine is $270, So I Can't Afford It

I've had this headache for days and so I contacted my neurologist.  He faxed a prescription for me for a med which would break the headache cycle.  Naturally my insurance doesn't cover it.  They want to substitute with a medicine I've taken before which, like the med I have now, isn't long-acting (which was the entire point of the new prescription.)  I am so tired of this entire country being held hostage by private insurance companies and the pharmaceutical companies as well.  The strange thing is that about half the country is bitterly opposed to any change to this bondage, even though it brings about needless deaths.

Want to do a blog update, but...yukky MIGRAINE. Again!

I've missed a lot of doc appts. recently due to the long recovery period for my surgery.  A total hysterectomy with bilateral salpingo-oophorectomy, to be precise!  I'm working on week 5 now of the recovery period.


But now I am going to have to contact my neurologist.  I've been having some horrific migraines which concern me, since it looks like the Lyrica I'm taking every day isn't working as well as it once did to reduce migraine frequency/intensity.  For example, I remember I had a horrific migraine starting the day before my birthday, in October, which lasted many days.  

Now I'm having more of these high-intensity migraines.  I've only had a few days migraine-free since the day I had my surgery, on Jan 22.  And I have no idea why this is happening. I do know that frequent migraines may be actually a serious problem.


Often if I take Maxalt (as long as my insurance is paying for it; I can't afford it on my own of course!) I get some immediate relief. I do better on Maxalt than the other migraine early-response medications. I can often knock out the headache if I take one Maxalt, then another a half hour later, and if necessary one more if symptoms reappear.  But I certainly don't obtain enough of the pills to be doing this daily.  Also, this new round of migraines respond to the Maxalt for awhile... but then return.  Boomerang.


NSAIDS do nothing for my migraine pain and most of them are contraindicated for me anyway due to severe GERD.  GERD complicated by a large hiatal hernia (inherited maybe?  my slender mom has one as well), and GERD nasty enough to have given me pneumonia before. The  only NSAID I can tolerate,  Celebrex, I am already taking for lupus arthritis.  I was taking Vicodin for migraine pain, but now that I know I have a liver problem I am concerned about taking too much Vicodin because of the acetominophen in it.  This means I'm actually better off with hydromorphone, even though I have several of the "discuss with your doctor" list of conditions for the drug.


My neurologist kindly takes the trouble to get hydromorphone for me.  However, the migraines I'm having now seem to need more of this medicine than what I was taking in the autumn.  I need more medicine in order to get the pain down to a level where I can at least minimally function.


I'm lucky that my mom happens to be staying with us right now because she has been helping out with my recovery from surgery.  For example, she is now the official taxi driver!  Usually I play that role since Dburr's vision prevents him from driving.  But I can't drive while taking hydromorphone, which means that usually I have to tough it out when I have migraines at times when we need to do important errands, or when we have doctor appointments (most of which are in other cities!)  

However,  I could never have driven anywhere with these particular migraines, even while, of course, going without pain medicine. The migraines have been accompanied by vision abnormalities, photophobia, sound and smell sensitivity, and sometimes dizziness and nausea.  

But one really odd thing is that the bizzare "half-vision" mystery thing I often get in my left eye with my migraines is not showing up at all in the current batch of headaches from hell.  A symptom I can't say I miss at all!


Sadness. I'm so frustrated.  I'm finally able to be up and around a little bit. I could have started to catch up on email...and blogging...and special projects--at last. Even though I'm stuck in bed a lot.  I do have this computer, thanks to Dburr, and I would be crushed without one! It is my lifeline when I am sick, which is too often, IMHO.  But the headaches I'm having incarcerate me.  In fact, looking at the screen just for this blog entry has made the pain worse, so I now need to spend some time yet again in total boredom.  Prison. A dark, silent, lonely  room with an ice pack on my head for company. Sigh.  


My life, right or wrong!  Actually, though, I'm  very grateful to HAVE life.  I'm just acting a bit weird  right now because it feels like someone took an ice pick to my head without me even seeing them do it.  If I ever find the one who did it...well...I guess there's nothing I can do to them! Rats! But it's Lent, after all.

Autoimmune Diseases Summit

For information about attending or signing up for the free webcast, see the American Autoimmune Related Diseases Association.

March 2010 is National Autoimmune Diseases Awareness Month!

Migraine. From. Hell.

OMFG.  This is a Big One.

Two Week Anniversary

I announced the big news elsewhere first and I'm sorry I ran out of steam and didn't put it here!

I had my surgery for uterine cancer two weeks ago.  I had a very hard time in the hospital, and am making a list of things that I was surprised to have to endure, but my surgeon was top-notch.  It looks like the cancer (endometrial adenocarcinoma) carpeted the uterine wall but did not, after all, penetrate it.  This was a relief and means I am stage 1a, although grade 2.  Stage 1a is the best :)  The cancer was caught early and the surgery should be curative!!!

So I'll be around to continue to write meaningless drivel in blogs ;)

Back to the subject of this one:  I've been suffering somewhat in my recuperation due to joint pain, periodic low-grade fevers, muscle aches, migraines, pleuritis...lupus, back in town.  I'm also just about to lose my voice again and I don't know if it's the Sjogren's (dry eyes, even though it's raining for a change!) or inflammation in the vocal joint.  I need to return phone calls but may have to beg for a volunteer secretary! Heck, I need an entourage.

Don and my mom have been doing so much so that I can get better.

My mom works all day to cook and clean and do laundry.  This is a gift from heaven.  One reason that where I live is such a disaster area which is truly dangerous to me is that there have been so many times where I am just too ill to do much--and there isn't anyone around who can do all of this when I can't.  Don has to focus on keeping his job, or we will be in even bigger financial trouble than we are now.  As it is, he's lucky to have any work at all in this economy which has been very hard on everyone we know  in the tech world.

But I am trying to enforce rest periods on mom.  Caregivers need to take breaks. Mom looks a LOT younger than she is, but she's 76, for God's sake.  I've already drained her retirement money for my medical bills and the massive over the counter medically-related expenses I have all the time...  I am very stressed by the fact that I can't think of anything I can do to ever make this up to her and to help her out.

And now Mom's expected to be a nurse!  Since Medicare home health care can't have a nurse come out daily indefinitely (it's not like the current social climate is going to encourage any increases in the help provided to seriously ill or injured citizens) , my caregivers have to be taught how to clean (with saline), unpack and pack (with gauze), my infected incision (I've only got two B cells from an experimental trial of rituxan; what did anyone expect? although btw the drug DID help me with the lupus!) -- and put the dressing (gauze and pad) on with special tape.

When poor mom was watching the nurse today in order to learn how to do this, she looked like she might faint. She is scared of hurting me when digging the the packing out.  And the strip of packed gauze, covered with blood/ooze when extracted from my wound before putting in a new one, is not the most pleasant thing to look at..Don, on the other hand, despite only being able to see with one eye--and with that eye only when up very close to what he is looking at--really loves medical procedures.  He's been my uncredentialed doctor here at home and has truly helped keep me alive.  I think he's ready to do surgery now ;)

The wound being infected means I'll have a longer recovery period than previously estimated.  But I already knew that I would take longer than the average bear, since the incision is a long and deep vertical one instead of the tiny one I would have had if the cancer could have all come out via laparoscopy.

I am so glad the cancer is out.  There are so many reasons I don't want to leave the world right now.  I am so grateful I have a good chance to stay.  I have a lot of people to thank, including my sister Patricia who made sure I got to a good surgeon despite my severe financial problems and even took off of work to be my patient advocate on numerous occasions, and my best friend Joyce who helped me in the hospital and drove me all the way to LA for my postop, and a LOT of others who have been loving and supportive and have helped me in getting through this.

I want to thank a lot more people when I'm not exhausted from such strenuous things as typing a blog entry on soft touch keys while lying in bed.  I'm not going to win any stamina contests right now. Also, Medicare has paid for a great deal of help for me, including the nursing services and an occupational therapist and an a physical therapist coming to where I live.  I want to explain more about this, but I get so tired when I try to do much of anything and so have to end this blog entry...more later but when I've had more rest !

(((hugs)))

It's Been A Hard Day's Night

And I remember hearing the band who wrote that song on the radio BEFORE they broke up.  I'm practically a centenarian. My favorite band, too.

I've been posting at another blog just because I had surgery and a rough hospital time and then recuperating at home comfortably with wonderful caregivers (my mom and Don) but with medical surprises every day.  Quite an adventure, but I would have vastly preferred Disneyland.  I really miss Disneyland.  Before it got so expensive, I went every year for my birthday.  I want to go again after I survive this current ordeal.  I need a treat, really badly.

I want to write about some of this but right now I have to get ready for an important medical appt. in L.A. But here are some of the posts I really should have made here.

Boy is cancer time-consuming.  I'd say I almost miss lupus, except, of course, lupus hasn't gone away.  Makes it interesting when my ability to do activities of daily living gets evaluated ("but it will be different tomorrow", I mutter, under my breath.  Cancer is the newbie on MY diagnosis list.)

http://beepbeep.livejournal.com/1115050.html

http://beepbeep.livejournal.com/1115335.html

http://beepbeep.livejournal.com/1115449.html

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.