A lot going on

My last post said some of it.  Here is an update: http://beepbeep.livejournal.com/1171657.html .  My family is going through a lot.  And I want to help where I can.

What frustrates me sometimes is how I can't will my body to do more than what it wants to do any more.  I have my birthday Sunday and I was born on "Boss's Day."  Well, my body is the boss.  The rest of me just has to go along.

Lupus Prayer Day, Sunday, June 12 · 7:00pm - 10:00pm

This is a Facebook event and I'm hoping this link works: https://www.facebook.com/event.php?eid=120598591357551

However, since it is a prayer day, I doubt Facebook attendance is required!

I'm assuming that any time of day, in your time zone, is fine.

Info:

Contact Jana at crossestocarry@live.com
On this day we are asking you and all your friends to post on your status, "Today I send prayers out to all that suffer from Lupus and for those we know and love that has Lupus, for those which has taken the time in their lives to help "US" to find a cure" Please spread the word among your friends, God hears us always, this day we pray for our mircle.

I can handle my personal plagues. But I need to be allowed to live.

I have been going through something which feels like the plagues of Egypt.

 I'm told my lupus is not doing too badly right now. I would think that would bring on a time in my life where I could actually do things I want and need to do before God calls me home. I have been so frustrated with all that I want to do in my head, waiting for when my body can get out of bed and LIVE.

I had a couple of good weeks in August. Started to swim again, even. Felt good. I had just moved and wanted to get the house in order. I made a start.

But at the end of August something happened. I caught a GI "stomach flu" bug. At least I think it was a bug since Don had it too. Fever even.

Don got over it. I didn't. The fever left but the nausea and diarrhea did not go away. I got sicker and sicker. I lost weight because I could only keep down a very low amount of calories. Unfortunately the price for the weight loss was severe weakness. I began to have falls. One of them had me ending up with my left side smacking against concrete. My jaw still hurts. I broke my ribs. I was in agony. The GI stuff did not go away. I had to go to an ER to get rehydrated. I had to go again and it was found that I had pneumonia. It was not easy to keep the antibiotics down but I did it.

I had this misery until mid-December when my rheumatologist made a change in my meds. This doctor has been my hero for many years. I thank God often for him.

I did have a good Christmas. But in late December or early January I had some illness with a high fever. This happened to me three times in January. At one point the fever was 105 degrees. I was told my lupus was ok and that these were just bugs I caught. At least one of them Don had so maybe that one was a community illness, but to have flu-ish symptoms with fever three times in a month? I think that is odd. I wonder what it was.  I have no idea, myself.

February brought severe weakness, breathlessness, and feeling like I couldn't think well. Then I started having tremors. They did not go away but got worse and so I went to my primary care doc to let him know what was going on. I was so weak I couldn't even park the car properly and a wonderful person from the doctor's office was kind enough to repark it for me.

My primary care doc is always very thorough so he ordered several tests. It looked like an electrolyte imbalance but turned out to be anemia. I was driving to a family event when I got the call from my doc to turn around and head for the hospital. I went home first and realized I was incapable of driving any more. I had trouble just getting myself to the bathroom. My best friend came and took me to the ER.

In the ER they gave me two emergency blood transfusions. I felt better after them although was told my anemia didn't completely resolve. Also, the cause is unknown.

I began taking iron pills and also making an effort to change my diet to include foods which are high in iron. I prefer a vegetarian diet but never seem to be able to stay on one due to some deficiency or another.

But I had to stop taking the iron pills. At first they made me very nauseated, but I bought some iron pills with a lower dose than the ones my insurance paid for and was able to tolerate them. Just another addition to my massive over the counter medical expenses. If I did not have financial help, I would not be alive. My friends and my family and my health care providers and all the help they give me are why I am still here. I love them all.

Anyway. I had to stop the iron nonetheless because I did not want it to interfere with the antibiotics I was taking. I was given doxycycline in the hospital for a UTI. But soon after I got out of the hospital, I was diagnosed with pneumonia. I was given a relative of Keflex. That seemed to work on the pneumonia that was first discovered, but an xray then showed either a migration or a new pneumonia. I was prescribed Avalox but could not afford it; my insurance substituted Cipro.

Off the subject for a moment...fyi I still have some brain involvement. It shows up suddenly in odd places. Like I will forget something I know perfectly well but I have to wait awhile before it bubbles up out of my brain. Right now I had to copy and paste from a dictionary to spell "substituted" correctly. When I was young I got awards in English. I know how to spell. But my brain just fritzes out when it feels like it.

Moving on.  The pneumonia either migrated or continued. I got Avalox samples from my primary care doc. And I've slept, slept, slept. Been mostly out of the world. And now at last I am feeling better. Today I was so excited because I was able to be out of bed and do some laundry.

I did have two nasty falls today. One got the computer dropped on the floor. This has happened before. I could never afford to replace it and am so glad it is still working. The other fall had me smashing against the dresser and I am so grateful all of the stuff there didn't break. I did bang against the tea tray and got pasta sauce all over me. Yes, I eat on a tea tray which Don brings in every night with food for me.

I have to live with the possibility of these kinds of falls. There is some nerve in my left leg that makes the leg go to sleep easily. I have trouble after eating in a restaurant unless I make an effort to stand now and then. My leg gets so numb it is useless. Sometimes I injure my foot or my ankle because I have to stand to get the leg to live again and I can't feel what I am doing until the circulation comes back.

I could list a lot of bizarre and nasty things I just have to live with but it's not all that important. What I want to say is that even though my health sucks I love my life and I love whatever I can do to help others as well. I have found many ways to be productive, to connect with the world, to find joy even with my continued health problems. I am so grateful for my life.

But I am tired of politicians trying to kill me. The budget cuts in my state's Medicaid (made by a Democratic governor, btw) will probably make me ineligible again. When I was ineligible before my poor mom paid all of my copays. Now she has no money at all. I don't know what I will do with another round of this. My copays will exceed my income.

The current proposal on the federal level to hand Medicare over to the loving care of the health insurance companies, while lowering taxes on the wealthiest of our citizens, in the name of reducing the deficit, resembles nightmares I have had before. Where I wake up and babble about the dreams and someone always tells me to calm down since my exaggerated fears will never become reality.  Never. Ever.

Please oppose the life-threatening proposal. Someday you too could be disabled, or a senior citizen, or have people you love in these categories. Why should we put lives on the line?

 I want to live and I know the rest of us do also. There are so many other ways to cut Medicare humanely. There are so many other ways to reduce the deficit humanely. I beg people to email their representatives. The Republicans need to hear from the people they represent who want them to pursue the many other ways to reduce the deficit without threatening the lives of our citizens. The Democrats need to be told that as the majority party they have a duty to stand up for the lives of our citizens instead of waffling and infighting.

 Maybe we really do need campaign reform so that all of our representatives are not pressured to mainly represent the interests of those who provide their campaign funds.

It would only be a gesture, but I think an important one, for our representatives to lose their pay once they are out of office and face the job market and the retirement planning the rest of us have to deal with, including needing Social Security. I think they should also be part of our health care system instead of having their own safe and comfortable coverage. Since they are willing to toss away my life and so many others I think it is very unfair that they are cushioned and protected, with our money, to never have to face what I am facing.

I wish everyone I know would email their reps now and tell them that people they care about need Medicare and please leave it alone. If they can't think of any other ways to reign in the deficit, refer them to me. I'm happy to do their jobs for them if it means saving lives. It's not even that hard. It just means throwing inflexible ideologies away and not needing any campaign funds from anybody.

Well, now I have to go wipe myself all over with a towel. I am having severe hot flashes and chills. Can't have any estrogen or that could wake up the cancer. Sigh. I've always hated the heat.

 At first the flashes were literally every five minutes, so now that they are down to about two an hour I can begin to cope. I also am so grateful to be in a comfortable home with cotton sheets and a fan I can have blowing on me all the time.

 I think of the devastation in Japan and would never complain about my plagues of Egypt. I love my life, as I said before...and I want to keep it. Please help me and tell our leaders to let me live?

Link:
Write Your Representatives

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

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.

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.

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."

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

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.

Benlysta

I was myself involved in a trial two years ago of a different medication, not this new Benlysta.

My med has helped some lupus patients who have tried it but it didn't make the primary endpoint in the study...although the drug is being used for rheumatoid arthritis and non-Hodgkin's lymphoma. The problem with it not being approved for lupus is that insurance often then won't pay for it for anyone with lupus...and it is very expensive...this is a common problem with other meds that are being used for lupus if they haven't gone generic, or if the patient takes enough meds so that even prices for generics can be a problem (how would I know about this financial quandary? don't ask!)

Although I am WAY WAY more than ok with the trade, I have to admit that in my case, I swapped nasty evil rotten kind of intense lupus for something else: a merely annoying case of catching-every-bug-that-goes-around-all-freaking-year-round. Well, usually merely annoying. I've not had great experiences when I've caught the flu...

...however, the people who say "lupus is like having the flu" forget to add "or actually it can be like having the flu, or not. Or can be like having the flu with someone also having split your head and every single one of your joints open with a hammer. Or can be like having the flu with a huge ball of fluid where your heart should be and while losing 1/3 of your own blood volume in a week, oh, and Alzheimer's, and did you know even your eyebrows can seem to hurt when every hair follicle is inflammed and ..." Well, I won't go on, but I COULD go on. Every lupus case is different and for each of us our individual flares of the disease can be very different. No simple summary will do here.

Jumping around from topic to nowhere back to topic again (because I have a fever and because it is after 3 am): as far as the I-now-know-I-will-SO-catch-your-cold thing...I learned recently that my B cells (component of immune system deliberately reduced by the med I tried) are not exactly quite bounced back yet. Low normal is 80. My level is: 2.

And I was very grateful for this medication and still am. But I hope this gives an idea of what some of us are willing to put up with, and with joy in our hearts, to reduce lupus activity...I consider the drug I took to be no less than a miracle for me! Even though it didn't make it out of the study. And even though if I needed more I was up a creek w/out a paddle because I could never have found the $$$ for it.

So, you may understand why there is a lot of interest in this "Benlysta™ (belimumab)" which has actually shown effectiveness in Phase III trials. For reals.

For us lupies, BIG news. GO, Benlysta!

Why is it sometimes so hard to sleep with a fever?

You would think not feeling well would be enough to MAKE us sleep! But it doesn't work that way. And since good old fibromyalgia nails me to an invisible crucifix of pain every time lupus makes me miss a night's sleep...oh not that I'm complaining, or anything...

Just Enough Low-level Pain To Be Annoying

I'm not in agony, and I'm glad about that!

But I'm having trouble getting much done today and I finally figured out that I'm having enough pain to distract me and just kind of wear me down.

I think one fingernail has a mild infection partially underneath it due to the nail having broken...and immunosuppression from my meds. It is fairly painful when I type, so this may not be a long blog entry ;)

My joints hurt all over, and I have pain when I breathe that is probably good old pleuritis. My head hurts and there is some pain behind my eyes. Some of my muscles hurt as well.

Because this isn't knock-me-completely-off-my-feet pain, I didn't realize the pain was a problem until now, and it is almost 5 pm...I was blaming myself all day for not being able to get anything finished which I started.

I definitely hurt enough to qualify for being in bed asleep or doped but since I have a nasty case of lupus and fibromyalgia as well, I've had to learn to get by with misery that would probably shock someone with normal health status. That's just the way it is; something I've accepted. But I want to learn to forgive myself when superhuman endurance has taken the day off.

The word is now out that Michael Jackson had lupus

As a friend of mine wrote to me in email, it would have been a tremendous help to those of us suffering from autoimmune disease had he disclosed this publicly. Basically we have all been waiting for a major celebrity to either have one of our diseases and go public or to just adopt us out of kindness. Celebrity involvement seems to be the only way these days to get the media exposure needed for increasing awareness, which helps with early diagnosis and thus less severe disease, with fundraising for research and for helping patients, and with educating the public so that patients experience less prejudice and misjudgment.

However, I know private individuals who keep their lupus a secret. Their reasons generally have to do with employment and health insurance concerns. As someone who made the decision years ago to do the opposite, to be as public as possible in order to help others get diagnosed earlier in the course of the disease than I was, I know from experience that it is in fact easy to encounter problems with employers and health insurance once one is known as a PWL (person with lupus!)

As anyone who has ever had the good or bad fortune to be around me for any length of time knows: the Amercian social safety net for the chronically ill, and the opportunties that one would think exist for creative ways to contribute to society while still having health care, food, clothing, and shelter, are not there. Not there to the point that people even needlessly lose their lives. And improving this situation been so consistently opposed by one political party, for reasons I don't completely understand, that I had to leave that party over this issue. (Now, as an odd kind of passionate and vocal political moderate, I am equally hated by everyone, lol.)

Anyway, maybe MJ had lupus. He certainly fits the pattern of disappearing and reappearing (when too sick to do anything else some of us have no choice but to have "down time",) of doing odd things (could be some brain involvement, or pain med side effects, but a lot of the things have a good lupus explanation, like the sunglasses and the parasol,) and of being mysteriously ill a lot but with different parts of the body being affected.

Here is a link , and another link .

Admittedly I've known of the rumor that he had lupus for years now. But I never did learn of any confirmation, and there are a lot of rumors about celebrities which turn out to be untrue. Some, of course, have publicly disclosed it and have even helped with fundraising for lupus organizations.

I've heard that Emily Dickinson and Louisa May Alcott might have had lupus (two writers whose work I have loved) ... I admit to being curious!



Michael, rest in peace.