710.0: A Life With Lupus

Happy 2012!

2011-12-31T19:00:00.001-08:00

I'm nervous about what is going to happen to my health care in 2012, since I'm dependent on Medicare and Medicaid. Ominous dark clouds ahead. But I am making myself approach the new year with some happiness in my heart anyway.

Hope everyone out there has a happy new year :)

A lot going on

2011-10-14T18:11:00.000-07:00

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.

I'm still here, but...

2011-09-22T22:37:00.000-07:00

Do you know how it is when everything hits at once?

I've got some things going on including some legal and some medical. For me, that is.

But one of my aunts got lymphoma of the brain. She has RA. She had surgery/treatment and she was to be recovered from severe dementia right now. And she isn't.

Another beloved aunt has Parkinson's and is now coping with dementia. She just broke her hip and responded well to surgery, but for some reason developed a terrible bedsore and possibly pneumonia as well. I fought pneumonia myself after catching it in the hospital in late February, not as severe as hers of course, but it reminds me of how sometimes hospitals have bugs going around. Incidentally (!) she is also blind from macular degeneration.

Anyway, I am praying for them.

Another aunt is developmentally disabled and I just received a call from the facility she is in because they needed a relative to give permission for her infected thumb to be treated.

My cousin and his wife had been the contact persons for aunt lymphoma and aunt developmentally disabled. But cousin himself had brain cancer a few years ago and now has leptomenginial carcinomatosis. Not the greatest diagnosis. His wife, who is a truly brilliant and strong woman who has been coordinating the responses to our family's current medical madness, has severe MS herself. How does she do it? I don't know but I am planning to go back east, where they live, and hope to help her out despite my own challenges.

My sister is being wonderful through this and I hope in some way I am helping her out.

Btw she and I both have SLE.

Our father died when we were very young. I was six and sis was four. We know little of his family. Our mother's family is the one who is being affected by all of the above. We don't have an endless supply of aunts and uncles and have already lost some.

All of this at once??? Maybe it is just the way of things. In some way it helps keep me numb so I avoid a lot of searing emotional pain I otherwise would have.

Prayers for everyone. Prayers for you, who read this. Sending out love. It is the only way to live.

Insecticides, No No

2011-06-04T20:21:00.000-07:00

I've always been made sicker than the bugs from insecticides. When I was in a serious flare one year, I was exposed to a formulation error in the pesticide used to spray my parents' house. My mom and I both became very sensitive to chemicals for a long time...like not being able to walk through pesticide or cleaning product aisles in stores! I was, in a way, lucky it affected her, or no one would believe me. Both of us found the chemical smell in the house to be horrific, but I was sick enough to have to go to motels and running up a huge bill, until it became clear that I would not be able to go back home for some time and needed to look for an apartment which my parents had to pay for! Needless to say, this did my lupus no good.

So headlines about pesticides and autoimmune disease do catch my eye:

Exposure to Insecticides May Up Autoimmune Disease Risk:

http://www.doctorslounge.com/index.php/news/pb/18307

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

2011-06-04T20:14:00.000-07:00

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.

Resurfacing...again

2011-05-17T21:05:00.000-07:00

I've had a weird year so far. In January I kept having flu-like illnesses with fever over and over again. After these stopped, in February, I started getting weak and shaky. This finally got so bad I had trouble eating without spilling. It turned out to be severe anemia and I had to have two blood transfusions. I'm taking iron pills now but do not know what is causing the anemia. It could have something to do with the radiation treatments I had for the cancer.

When I left the hospital after the anemia treatment, I had a pain in my chest. I ended up having pneumonia and severe bronchitis following the pneumonia for about 2 1/2 months. Now I've been up and around a very short time and the things that have piled up, like email and paying bills and even laundry, are quite something!

Maybe one of these days I can do something more recreational, like writing in this blog...

Migraines, redux

2011-04-10T17:03:00.000-07:00

Don't they suck? I know my fellow migraineurs agree...and many lupies are prone to them. Right now I've got the blinding pain and some nausea threatening to become severe nausea. I took a Frova and hope it kicks in. Right now I've got to do the dark silent room thing. So much for my plans for today...unless Frova does the job.

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

2011-04-08T01:27:00.000-07:00

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

Welcome to the lupus world, Benlysta!

2011-03-10T15:01:00.000-08:00

It's only the first drug approved for lupus in about 50 years. Big news, ya think?

I could not be more thrilled. I've seem to have had my own serious lupus whipped for now into milder lupus. But this drug is a new and safe alternative for ppl with serious lupus. As a lot of us know, long-term high dose prednisone (corticosteroid) has side effects of major doom. I myself got the cataracts in both eyes, obesity and metabolic syndrome, diabetes, serious emotional lability (how to not make friends and influence people), the infamous "moon face", and I don't feel like listing more. I really welcome the new drug as a beacon of hope for people I know and will meet in the future who have serious lupus goin' on.

Some info from the Lupus Research Institute. I wrote out the url for ppl whose technology is giving them a bad hair day.

http://lupusresearchinstitute.org/news/discoveries/11/03/09/fda-approves-benlysta®-lupus-breakthrough-millions-sufferers
You can even see my doctor there!

It got through the FDA, a miracle in itself, and if it works as expected I think we've got a milestone on our hands!

Where have I been? The people who have now dropped me wanted to know...

2011-03-10T14:45:00.000-08:00

I know I'm not the only rheumie (rheumatic diseaser) who disappears when I get really sick. My thoughts are with my family, my friends, and everyone whose lives I touch in some way. But I've been down for the count. I can't tell you how many times I've fallen asleep with the computer in my hand. Sometimes it slips out of my hand so I'm glad when I'm ill I use it in bed and not somewhere where it can be grasped by gravity for a big trip. I've also fallen asleep while eating...literally with a fork in my mouth full of food. I get TIRED.

I had about three months of The Mystery Disease. Diarrhea, vomiting, dehydration, falling, breaking ribs, the beat goes on. It started with a GI infection at the end of August and ended with my rheumatologist changing my meds on December 9 (I remember the date!) Even my gastro doesn't know what was wrong with me.

So I was able to have Christmas. However, in January, I had at least three bouts of flu-like disease with fever. For at least two of these, my symptoms matched what was going around in the community. Don't know if my immunosuppression played a role. I basically have no B cells, secondary to an experimental trial which included rituxan some years ago...which made my lupus a LOT better.

Anyway, after the flu-y thingies were over, I ended up with a lot of fatigue. But the fatigue got worse. Then I started being breathless with exertion. I have seasonal asthma; was it showing up? Docs said maybe. Soon I couldn't hang up my clothing. But I've been sick like that before when I've had lupus lung involvement. But my sed rate was not high. Then I started shaking. This was weird. It was like I was developing some scary tremor. I could not type on the computer easily or hold a drink w/out spilling. I made an appt with my primary care doctor and had to be very careful driving there. I was lucky that the people in his office are so nice that one of them volunteered to straighten out my car in the parking lot.

Primary care ordered blood tests. The next day, I tried to drive, in the rain, an hour south to go to a family event. I got a phone call and it was from my doctor. He said I had a very severe anemia and I had to go to the ER to be admitted to the hospital. I had to change plans and go north.

I stopped at home to just grab a few things since I'm allergic to most soap products etc. And I realized I just couldn't drive the car any more. My incredibly wonderful friend, who herself is in a bad lupus flare, came to my city to pick me up and took me back to her city to the hospital!

I had my first (at least the first I knew about; never know about surgery) blood transfusion. I was in for three days.

When I came out, I felt a LOT better...but I was tired. I had a bit of pain in my lungs which I had mentioned to the hospitalist but I must look like a total hypochondriac or something. And of course no one could hear anything in my lungs. I think we often feel when something's up before the signs and symptoms become apparent and before we show up in some trouble on any tests. Anyway, now I've got pneumonia. I'm being treated with antibiotics. And probiotics in the hope that I don't get what IBS in combo with antibiotics do to dehydrate me. So far, so good.

I've gotten out of touch with folks again. This has happened so often in my life...sometimes for months or even a year or two. Naturally people think I don't care; I'm not interested; I'm unreliable; etc. And so I lose people.

I'm at the point where I want to make a huge email list that I can use to send out one email: sorry, I'm sick again. Please pass this on... But an awful lot of people don't get email. And an awful lot of people start seeing frequent claims of illness as just making excuses for not contacting them or that I am a useless and irritating whiner/malingerer.

Anyway, such is the life of some of us who are majorly chronically ill.

I DO care and I think of those I care about, those I've promised to volunteer for, everyone in my life, even when I can't be there in any kind of not-just-spiritual way.

Sigh. And please excuse what I'm sure are some errors in this post. I feel lucky to know what day it is, at this point.

How Many Other People Out There Have To Take Showers Constantly Or They Get Blisters?

2011-01-19T14:23:00.000-08:00

I'll be surprised if a lot of people raise their hand.

The blisters are painful, so I'm always the one in the hospital becoming a huge fall risk, since I have to drag myself out of bed to the shower alone if no one will help me (I'm sure they think my rash and blisters are imaginary and just my idea of a little fun. I really do need to come in armed with a photo sometime, except I'm not sure I want to put myself through that even to get a good picture.)

Anyway, my skin seems really irritable today, so it's going to be at least two showers if not more. Splish splash.

Do I like hot flashes waking me up at 4 am?

2011-01-15T03:59:00.000-08:00

That would be a NO.

I didn't think surgical menopause would be a lot of fun, and years of autoimmuning have certainly raised my pain and suffering threshold. So hot flashes are not the end of the world. But mine seem to be on the severe side (can my body do ANYTHING mildly?) and I am going to be pretty pissed off if they don't at least burn some calories.

Where I've Been

2010-12-21T17:30:00.000-08:00

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

2010-12-21T17:15:00.000-08:00

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,

2010-12-21T16:15:00.000-08:00

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

2010-08-24T02:47:00.001-07:00

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

2010-07-11T22:37:00.000-07:00

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

2010-05-23T20:28:00.000-07:00

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...

2010-05-18T21:07:00.000-07:00

(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

2010-05-11T16:09:00.000-07:00

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

2010-04-04T00:16:00.000-07:00

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...

2010-03-26T02:36:00.000-07:00

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.

2010-03-17T15:26:00.000-07:00

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

2010-03-12T13:08:00.000-08:00

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

2010-03-11T22:46:00.000-08:00

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

2010-03-11T22:39:00.000-08:00

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?

2010-03-08T22:13:00.000-08:00

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

2010-02-26T11:16:00.000-08:00

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!

2010-02-24T14:53:00.000-08:00

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

2010-02-14T11:08:00.000-08:00

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.

2010-02-07T00:08:00.003-08:00

OMFG. This is a Big One.

Two Week Anniversary

2010-02-05T16:56:00.000-08:00

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

2010-02-01T23:26:00.000-08:00

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

2010-01-19T10:28:00.000-08:00

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

2010-01-14T13:56:00.000-08:00

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

2010-01-14T13:52:00.000-08:00

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...

2010-01-05T18:30:00.000-08:00

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

2010-01-05T11:23:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just another day in the USA.

Waiting for Godot, I mean surgery date

2009-12-28T17:10:00.000-08:00

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

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

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

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

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

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

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

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

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

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

2009-12-16T18:16:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-12-11T11:36:00.000-08:00

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

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

Important Patient Conference In Santa Barbara, CA

2009-12-03T14:36:00.000-08:00

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

Note: please RSVP to attend. Info:

Santa Barbara Patient Conference

Saturday, December 12, 2009

1:00pm – 4:00pm

Earl Warren Showgrounds

Warren Hall

3400 Calle Real

Santa Barbara, CA 91305

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

1:00pm – Registration

1:15pm – Welcome

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

distinguish it from other similar diseases

Dr. Timothy Spiegel

2:00pm – New Advances in Lupus Treatment

Dr. Daniel Wallace

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

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

Support Group Meeting Tonight

2009-11-24T14:22:00.000-08:00

The Santa Maria Lupus and Rheumatic Diseases Group is meeting tonight at 7:00 PM. Anyone with an interest in any rheumatic/autoimmune disease is welcome to attend. Email smlupus@gmail.com for more information. FYI, this will be our last meeting in 2009. Happy and healthy holidays to you all :)

First blog award!

2009-11-18T23:36:00.000-08:00

I never thought I'd get to put up one of those cool images that link to a site which likes my blog!!!

I've seen them all over other people's blogs, of course. But I didn't expect to see one on any of my blogs. I've never been the type which gets much recognition for anything I do, or even very many "thank you"s or other positive feedback stuffs like that. What I get instead is the criticism whenever anything goes wrong! Something about me just seems to silently say "Complaint Dept."

Anyway this award thing came out of the blue and could not have been better timed for a much-needed lifting of my spirits. Thank you, disease.com !!!

I didn't know anyone even knew I was here, all alone, blogging my heart out, to tell you the truth. When I think about what I've been through with diseases, treatments, and what these have done to my life, the phrase "In space no one hears you scream" comes to my mind a lot. Where does that come from, anyway? Wasn't that from an ad for the movie Alien?

Ugh. What made me think of THAT film. I was up half the night last night, again, having a special relationship with The Porcelain God thanks to the vomiting my hiatal hernia sometimes likes to induce when I am trying to sleep, and the scene I suddenly thought of from the film--well, if you saw it, you understand what flashed through my mind. I'm a bit queasy now.

I just want to stay happy about my award, so time for some thought re-direction. I saw a great sunset the other night. I'll try to share it with you below, if various technology gods are not too cranky. And very soon after this sunset, I saw a shooting star on my drive home! It doesn't get much better than that :)

SSRI Discontinuation Syndrome

2009-11-16T00:58:00.000-08:00

Oh, this topic is so interesting...just felt like blogging about it for no particular reason...riiiiight!

A few people I know have been wondering where the hell I have been the past 2 weeks or so. Let's just say that where I've been, you don't want to go.

I've been trying to function, despite having my brain basically in need of a long vacation at a hotel with padded-wall rooms, but I am certain I didn't fool everybody. At least 4 people let me know I was not acting like myself...which I appreciated, as it was done tactfully and gently.

The frustration was that I was not sure if I was believed, when I assured them I had contacted my doctor and asked for help. I actually did so twice. Now that I am doing somewhat better I intend to follow up and find out just what went wrong--that is, why I didn't receive help, and what system I could set up so that if I ever need help again while perhaps not being able to communicate so well, something would still be done for me...

A lot of you know what withdrawal from prednisone can be like. I personally have a bad history of being miserable from prednisone, in the myriad ways that drug notoriously has for making one wonder why God would put the cure for too much inflammation, along with intolerable, even potentially deadly side effects, together in one place.

Please don't be frightened of short-term courses of steroids, but those of us who have had to deal with them long-term (and remember, many of the medications for autoimmune disease used right now just weren't THERE when some of us where diagnosed somewhere back in the Bronze Age) can probably point to a part of our body and describe how prednisone or an equivalent somehow messed it up! Anyway, for me, the emotional lability and depression triggered by steroids is significant, and withdrawal from them is mixed with both physical and psychiatric symptom exacerbations. Lots of fun, NOT!

I recently had to go up on prednisone for my notorious post-respiratory-infection cough (when I was 7 I had the thing the entire winter which had my mother being told I would simply not live long), a treatment new to me for this miserable cough but which actually works. But then I was coming off of the high-dose prednisone just AT THE SAME TIME as when I had to:

(cue sinister music) withdraw from the drug Effexor.

This was just one of life's little coincidences that help one understand what "perfect storm" and "failure theory" are all about! (cue dark clouds moving in, now.)

Well, two weeks of hell, and not quite over. Just over enough so that I think I might actually sleep tonight. I also think I am speaking English and am doing so without pissing anybody off at the moment...and without babbling nonsense. I think. I think. I hope this is the case.

But my dose of this drug was only cut, albeit too sharply for me, in half. That means I'm still taking it. Oh my freaking God.

I've now gone from not understanding why a med that was working for my long-term problem with either lupus-induced or steroid-induced or mixed-caused (at this point I'm not sure the origin matters so much) major depression was being changed in dosage...to being grimly and absolutely convinced I should get off of the drug entirely. And I wonder just how that is going to be safely accomplished. And hope my doctor agrees with me! Because I'm going off of it, somehow. I clearly overreact to it or something, or that withdrawal wouldn't have been the hell on earth that is was. And still sort of is. It's not over. I still feel rotten, just more manageably rotten.

Admittedly, reading Wikipedia is not like reading peer-reviewed medical journals (then again who can afford access to those any more) but I found this, at http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome , to be very interesting re Effexor:

"Venlafaxine

Sudden discontinuation of venlafaxine has a high risk of causing potentially severe withdrawal symptoms. Even missing a single dose can cause symptoms of withdrawal.[25][26] The high risk of withdrawal symptoms reflects venlafaxine's short half-life as well as its effect as a dual uptake inhibitor.[20] Discontinuations have a tendency to be significantly stronger than the withdrawal effects of other antidepressants including the tricyclic antidepressants, but are similar in nature to those of SSRIs with a short half-life such as paroxetine.

Symptoms of discontinuation are similar to other antidepressants including irritability, restlessness, headache, nausea, fatigue, excessive sweating, dysphoria, tremor, vertigo, irregularities in blood pressure, dizziness, visual and auditory hallucinations, feelings of abdominal distension, and paresthesia. Other non-specific mental symptoms may include impaired concentration, bizarre dreams, delirium, cataplexy, agitation, hostility and worsening of depressive symptoms. Online help groups consistently mention withdrawal from Effexor as triggering dreams of a particularly distressing and hellish quality.[20][25][26][27][28][29][30]

Electric shock sensations have also been reported[26][29] with many patients describing the symptoms as "brain zaps". It has been suggested the sensations may represent an alteration of neuronal activity in the central nervous system.[31]

Studies by Wyeth-Ayerst, the maker of venlafaxine, and others have reported severe withdrawal cases, including withdrawal as the presentation of a stroke, as well as neonatal withdrawal (neonatal withdrawal has also been reported with paroxetine, fluoxetine, sertraline, and citalopram). In some venlafaxine withdrawal cases, successful discontinuation was eventually achieved by the addition of fluoxetine, which was later discontinued itself without difficulty."

It is easier to say which of the above symptoms I did NOT have, since I suffered most of them and pretty severely.

1.
I do not know about my blood pressure.
My heart rate was noted by a doc as being too fast during this time: 110

2. I did not have auditory hallucinations.

3. No stroke.

4. No neonatal effects; didn't deliver a baby to have them.

--

I've gone off of SSRIs before and did not have anything like this happen, but I believe they were ones with a much longer half-life. I discontinued Prozac (fluoxetine) years ago due to headaches and then later went off of the replacement, Zoloft, due to diarrhea, exacerbation of restless leg syndrome and nervousness. I still take trazodone at bedtime for sleep betterment (although now I'm wondering about getting rid of it as well on general principles!) I discontinued Celexa, which had worked for me for many years, simply because it no longer worked, and replaced it with Effexor.

It took me a long time to find the dose of Effexor which seemed best for me and that turned out to be a bit high at 300 mg. But I had some prior symptoms while on Effexor of going oddly rapidly into depressive states, which led my doc to believe that this was not the best drug for me and that it could even be dangerous.

And I now totally agree with him! because a withdrawal like that means that I would be in big trouble every time Medicare Part D played its usual little game with my med renewals! ("Oh, your insurance isn't covering that on third Tuesdays...you'll have to fight for it...oh you'll be out of it soon? So sorry")

Right now I am completely exhausted, mildly depressed, mildly nauseated, and a bit scared. I also feel very alone. I'm not sure why the latter.

And I feel kind of like I'm drowning...because I don't know as much about psychiatry as I do about rheumatology, and I am somewhat overwhelmed now that it appears I had better start learning.

Honestly, I'd rather be at the movies or something. I kinda sorta remember going to movies, back in the day. I want to see a Disney cartoon or maybe a musical. Something really really retro and safe.

Benlysta

2009-11-11T03:03:00.000-08:00

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?

2009-11-11T02:47:00.001-08:00

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...

I know there are some ppl with autoimmune illness who are concerned about having children

2009-11-11T02:45:00.000-08:00

...and so here's the stuff on the health care bill and abortion rights.

Historic Health Care Bill Passes The US House Of Representatives...

2009-11-10T01:31:00.000-08:00

and wears out one lupus patient.

I couldn't leave something this important undone, but it has been very hard to try and sift through all of the information, opinions, and passions.

Here's what I've come up with as being as representative as I could get over the past two days on The Bill:

http://donaldburr.com/healthcare.pdf

This health care reform campaign has been very much of a rollercoaster ride and I do not for one minute think it is over.

It is especially important that those of us who live in the U.S. and are coping with autoimmune disease in ourselves or our loves ones inform ourselves on how the bill might affect us and to let our representatives in the federal government know what we think about what is happening.

If you wish to contact your Senator about the bill quickly (the Senate has not yet voted on it) you are advised to phone or to fax. Email has been sent in large enough volumes that it may not all be being read quickly, and I'm told that mail to the Senators at their Washington addresses is still subject to the delay of search for anthrax or other dangerous substances.

My lupus is supposedly "fine"

2009-11-09T23:53:00.000-08:00

But I've had some very hard times with health recently. I feel like all of my "diseases and conditions" are now on some kind of collision course with the side effects of the medications and of the enforced poverty and maybe even having to deal with being a bit older while still having to cope with All This Stuff...I don't know. I'm just incredibly tired! Like I could sit down and close my eyes and maybe feel like I'd had enough rest and be able to open them again after...a year.

Costochondritis

2009-10-10T20:25:00.001-07:00

Costochondritis is considered to be harmless. I disagree. It can be entirely too painful, and pain can wear a person down to where they feel they are not even really alive...as well as turn a perfectly nice person into a bitch from hell.

Costochondritis also hard to spell. Frankly, costochondritis sucks. It truly does. I swear on a stack of Bibles that it is TOTAL SUXOR.

You heard it here first!

Things I Hate, #1038485

2009-10-10T20:15:00.000-07:00

Migraines.

Oh how I hate you, migraine.

People say I never complain about them. That is not really true. I don't complain often, but I do complain...to the poor guy who lives with me, and sometimes to doctors. But since I know that I have to endure them, no point in complaining, really.

But that doesn't mean I LIKE them.

I hate the pain.

I hate the "down time" enforced upon me.

I hate the nausea.

I hate the interference with my vision.

I hate the vertigo.

I hate the sensitivity to light, sound, smell.

I know they can show up with lupus. I don't exactly like lupus, either. But again, no point in complaining. Just an occasional vent once in awhile to let the emotions out.

Just Enough Low-level Pain To Be Annoying

2009-08-21T16:40:00.000-07:00

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.

Does The Pasted Smile Have To Be On 24/7?

2009-07-14T01:01:00.000-07:00

I remember seeing a therapist (voluntarily; my own idea even!) many years ago, long before anyone ever thought of producing "The Secret." It was pointed out to me that I smiled ALL the time, even when I was not happy inside. I had to learn how to let my feelings out. Well, that was then and this is now. Now I've got to dig through old musty storage boxes to see if I can find the Smile All The Time magic vial I must have been using then. Because now, that is a freaking requirement.

My sense of humor is the first thing that gets me into trouble. I keep trying to remind myself that I speak an ancient language understood perhaps still by people who live in New York City, but certainly nowhere else. Most people do not like me making dry observations of the world around me. They want That Smile and Sweetness! Flip the switch and turn that back on, girl!

I'm actually a generally happy person, but contented so much of the time that it is EXPECTED of me. And so I'm never really seen as being happy anymore because that's just "normal." To register happiness I would have to dance on the tables or something, and there is no way I'm getting up on those flimsy, unstable things and putting my feet on the last patron's filth, so forget it. Times have really changed. I'm heavier and tables are lighter than they used to be.

So if I'm not smiling I must be DOWN and DOWN is NOT ALLOWED in the new millennium! We create our own reality! Smile girl; create some world peace!

But you know, I could just be tired? Resting?

Lately I've been struggling with the joint pains again. They are not anywhere near as bad as they could be, or as they indeed have been before. In fact I could probably totally ignore this latest bout if it weren't for the fact that it involves, as usual, all of my joints. Except possibly for a few in my back, and I managed to injure most of those over the years of trying to lift things that were too heavy for me but I wasn't cute and sexy enough to get help.

There are joints where people don't think of...or at least I didn't think of until pain let me know. My vocal joint HURTS and that's why I've lost so many "phone me don't email me" friends. But today it hurt to use my voice AND my hands. Oh and my arms, shoulders, hips, legs, knees, ankles, feet (there are way too many joints in our feet, Lord, just please make a note of it). Even the tips of my fingers hurt from mild vascular stuff. My scalp hurts from tiny little inflamed hair follicles. Of course it hurts to breathe; that's so common it's normal for me now. And I won't go into intestinal pain; way TMI.

All of that is: not bad. My blood tests will probably be ok. And so I will not be treated for this flare. And I'm ok with that because the treatment options are toxic and I'm already taking as much of them as I want to...except for the ones there is no way I could afford to pay for.

It's not just the lupus. I have way too many things wrong with me now. I had two doctors try to tell me that, but I know it. I'm supposed to be trying to get better. Believe me, I am trying. I'm always trying. It's probably why I'm still here.

But I am getting tired. And nowadays there isn't even anyone to share the struggle with and get a hug in return. That's not POSITIVE THINKING, doncha know.

Yes, there are moments when I want to give these wimps an ice storm instead of the few drops of rain they've had to cope with once in awhile, and add the one-fingered salute to go with it. But the moments pass quickly. I'm not wasting my precious energy, which is in short supply, on them. I'm really hoping I'm not going to kick the bucket soon, but there are so many things I really want to get done first if I am. So I'm a girl in a hurry. I'll try to remember to SMILE as I shove idiots out of line, slide down bannisters, steal a fast car, hitchhike to the finish line if I have to.

No, I don't have a death wish. I WANT to live. I'm hoping I live long. And I'm not in any kind of physical crisis. I just sort of sense my body is whispering something to me that frankly I don't really want to hear.

Oh God, the lectures I would get for this post if quite a few people I know saw it! Good thing no one reads my blogs! Bwahahahaha.

Sick people targeted in CA budget crisis

2009-07-10T16:23:00.001-07:00

It's not easy in CA with a serious or chronic illness any more. This budget process itself is getting sicker than any of us are, IMHO.

Please take action if you are a CA resident--or ask any CA residents you know to read, sign, and pass on:

CA Budget Crisis: Murder Is Not An Option

Happy Birthday, USA!

2009-07-04T16:58:00.000-07:00

I've had to spend most of today in bed but I get to go out to dinner tonight and then to a special event :)

Hope my entire country had a happy birthday!

Photo Credit

I KNEW IT #5,369,281

2009-07-01T17:35:00.000-07:00

I knew my big toe was infected (again) in a deep place near the nail that no one could see. What can I say; the intense pain is a special clue I receive that others don't. I have a very high threshold for pain so I have been up and around on it, and have basically been trying to dig around and find it myself (while shoving in every antiseptic I could find.) I wanted very much to go to my podiatrist who would have taken care of it but I didn't want to deal with the Wrath of Dburr if I were not ready for Anime Expo tomorrow at 0600 or so...

Anyway today in the drugstore formerly known as Longs my toe decided to make a dramatic announcement and drip horrid green stuff all over. I'm glad whatever was in there is coming out. I'm glad I was wearing sandals.

I gave it a hot soak with hospital antiseptic but this isn't something I can take with me when traveling. It would leak and stain everything. I'm not sure if I have band-aids, and I'm also not sure I should keep walking on it so much.

But I have to clear a path to the old crab tank in the room where all the furniture hasn't been moved yet because two molting crabs are in it and will need water while I'm away. And if I do need band-aids I will certainly be the one going out to get them. I haven't had enough to drink today and had a dizzy spell in a scary place. But I've got to get the laundry in! Somehow! Dburr isn't home yet and I think his kitchen needs my cleaning skills anyway. The betta fish is sick. I need to get a big dish for the biggest crab who is knocking the small one over when he tries to take his daily salt bath.

Oh...and I'm tired :) I think I got too much sun just getting in and out of the car today.

But I was right about my toe, dammit.

The word is now out that Michael Jackson had lupus

2009-06-28T18:42:00.001-07:00

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.

Good old lupus

2009-06-18T18:48:00.000-07:00

Well, survived acute bronchitis, again. But barely.

The Cough of Doom is finally gone. Am almost, but not quite, finished with the prednisone withdrawal. I need to get down to 5 mg/day like I was before (wish I could be at 0...sigh. Am on 10/day now. Not so hot considering I have diabetes and osteopenia and AVN already...and have a history of steroid-induced high ocular pressure with glaucoma in the family.)

I got excited that is was summer -- formerly my worst season, but now I know I have to avoid sun and heat, and the horrible and strange colds and flu which have plagued where I live through the cooler months are now gone. However, I immediately overdid it. We needed to put a twin bed in our place so my mom can sleep over here sometimes. There are still a ton of books etc. that now need to be put away, but my body has gone on strike. Today I was crippled by joint pains and overwhleming fatigue. I keep falling asleep wherever I find myself. Exhausted. It was Tuesday we did the heavy work; I had aches and pains and was very tired yesterday, but worse today with some pain on breathing so I know it's SLE rearing its ugly little head.

It was a huge job to write this short entry! Everything feels soooooo difficult. I have one eye which I am trying to force open so I don't fall asleep but this is not working. zzzzzzzz.

Relapse

2009-05-05T00:43:00.000-07:00

My flu relapse sucks! Kids, don't try this at home.

Lived Thru The Night And Hope That Was The Nadir

2009-05-04T00:12:00.000-07:00

I did have a horrible night and came close to giving in and going to the local ER. I could not breathe well, but I didn't want to go. I couldn't afford the copay for one thing. Also, I don't do well in hospitals overall (all of the crazy sensitivities etc. I have do not translate to nurses) and that's where the real germs with might and power lurk, waiting for the immunosuppressed. And there is always some sort of bureaucracy that trips me up, the last time having to do with the fact that my primary care doctor is in a different city.

Today after finally getting some sleep I felt like a facecloth that had been wrung and hung up to dry. Exhausted, depleted. But I could breathe better than I did last night. I tried to get some very icky paperwork done today and I did, but only a little bit of it, as I can't do very much very quickly. Tonight I kept falling asleep in front of the computer and I'm going to go take a shower now and get into bed and turn out the light.

I'm grateful for being better today than I was last night and I hope I will be even better tomorrow. Fifteen days, an antibiotic, three inhalers, and a lot of extra prednisone later, I might actually be starting to get over this respiratory infection. I sure hope so.

No, I haven't been tested for H1N1. I do not meet the criteria:

"Testing for Swine Flu
Testing for swine flu is being focused on patients who meet the following criteria:
o Patients who have been hospitalized due to influenza-like illness
o Non-hospitalized patients with influenza-like illness who:
• Had close contact with a person confirmed to have swine flu
• Lives in a high-risk setting for transmission (e.g., school, prison)
• Is part of a cluster of people with influenza-like illness (only one patient needs laboratory confirmation)
• Returned from Mexico within 7 days of illness onset or cared for ill household members with this travel history"

So anyway, good night.

I am having a lot of trouble breathing

2009-05-02T22:32:00.001-07:00

The only thing that works is what is left of my last old aerosol inhaler, rapidly depleting. The new one does not stop my cough or my gasping for air. I get a bad headache first and my chest makes horrible squeaking noises; don't know what would happen next.

I just love the suggestion that we go to the ER so they can gather real evidence on how much we need the old inhalers. Maybe some of us wouldn't survive the trip. Last time I was there, I almost didn't survive the triage--a security guard told the idiots that a lady who had been forced to wait too long finally passed out. Not to mention the costs to the patients (even insured have deductibles and copays) and to society with the ER being an extremely expensive form of health care delivery.

It's also the last place we immunosuppressed want to be. Where all the nastiest germs gather together in one place.

Was I helping to cause global climate change when using the effective inhaler? I swallowed all of the aerosol, I thought! Funny that so many gross polluters are still out there, while asthma patients gasp for breath... Not that the drug companies could possibly have anything to do with it, with the new inhalers being much pricier...

I seriously think lupus and Sjogren's have done some stuff to my lungs as well, but that's another story.

I've been very concerned about the environment, global climate change, been accused of being a "tree hugger", etc. I'm actually surprised that I'm now on the side of the aerosols! For this one purpose, that is...I would not survive an alternative which meant high-dose oral steroids for long periods since I get such horrific side effects to them. I don't know what they will do with me. The first step is making sure docs BELIEVE me...I need to get witnesses!

They shouldn't tell us that the tests show it's all in our heads, not our lungs. I've heard that one before; so many times before finally getting a correct diagnosis. I was one of the luckier ones when I started, at age 18, to really work on finding out what was making me so sick; only took five intense years, very harmful to my self-esteem, of "you must be neurotic", etc.--before learning at last that I had lupus. Been there; done that; bought the T-shirt; ain't goin' back.

I'm not alone; seems there is even a petition . Please sign it and tell them you have a friend who can't breathe...I seem to be doomed to go through this cough from hell after every cold, flu, or allergy season. It's adding up to a lot of time.

The rumor is that you can still get the old inhalers in Mexico. I've never been to Mexico. I'm getting sick from eating my former favorite, cherry tomatoes, which suddenly all come from Mexico instead of California. I'm going to have to make some kind of bleach solution or something recommended for the immunosuppressed. It seems watermelon this summer, now also only from Mexico, will be out entirely. I have absolutely nothing against Mexican people, culture, food, etc. I can't help getting sick, and I don't get sick on EVERYTHING I eat that comes from there, just enough times and badly enough to not want to play Russian roulette. So although I would love to visit, I'm afraid to. This immunosuppression stuff isn't a lot of fun, really.

Wonder how I can grow my own cherry tomatoes in pots sans the neighborhood cats. Just an aside.

Woke up, got out of bed, dragged a comb across my head...

2009-05-01T13:48:00.000-07:00

and there the similarity to the Beatles song ends :)

I am having trouble breathing today. And it hurts to breathe. I've also got a nice big shiny RED clown-face lupus "butterfly" rash. I'm trying this new makeup I got from Clinique to guinea pig for my support group. It's green. Supposed to reduce red. I think it did a bit, but I may just have to look like I just stepped out of a sauna on this actually cool day...

And I've got joint and muscle aches, and am very tired, so probably won't be seen by people except those at the pharmacy and at wherever dburr wants to go for errands, anyway !

What's wrong with me lately

2009-05-01T02:57:00.000-07:00

Well, I had some kind of flu bug that probably started affecting me on April 18. I don't have flu symptoms any more. Due to being immunosuppressed from lupus treatments, and in particular now being B-cell suppressed from receiving rituxan in a medical study, I am catching infections very easily. I did get a secondary bacterial infection in my lungs, cleared by a Z-pack (antibiotic.)

What's left is a cough and some trouble talking, breathing with any exertion, fatigue. At first I really couldn't talk at all but now that is better. This unfortunately is a typical problem for me, and goes back to April/October of childhood years when the allergies came around. I did see a pulmonologist, was diagnosed with acute bronchitis (no, you can't catch it from me -- but wit the H1N1 stuff happening now I can clear a room fast when I cough!) and seem to be getting better with several medications. Unfortunately one of them is good old prednisone. I had been losing weight at last, but who knows what it will do to my metabolism again. Hopefully I can get back to a low dose soon. I'm already swelling, ugh. And, yes, I do feel the tendency to depression, moodiness, and particularly oversensitivity to criticism. I keep reminding myself it's the med. And, I'm avoiding criticism. I'm ok if I stay quiet and peaceful, which is also what I need to get better.

Swine Flu Info

2009-04-29T22:37:00.001-07:00

I really wanted to cut and paste the blog entry I made on another blog to here, but I am so tired I would screw it up! So here is the current info I have. I will be posting more on what the immunosuppressed (like those of us taking immunosuppressants for autoimmune disease) should do when I find out.

Today's Half Awake Words

2009-04-28T15:14:00.000-07:00

I am so tired. I fell asleep really late last night and for some reason there were a million phone calls waking me up this am.

I've decided to make this blog my only lupus blog for now. I can't handle more than one lupus blog! It is hard enough to try to keep up on one.

There will be a support group meeting tonight. I lead the group and have to prepare. I want to bring some current swine flu info. I'm sure people are nervous about it.

I have a nasty cough. I did have a flu, gone now, but this is my usual dry wheezing cough that I get after any respiratory infection. It has something to do with the asthma and although I'm hoping to avoid extra steroids it will probably come to that to get rid of it.

My asthma is NOT contagious...

Now this is JUST TOO MUCH

2009-04-22T19:52:00.000-07:00

Ok, found the last Maxalt samples (why won't my insurance give me Maxalt?) and the new nausea med; got the migraine to be a bit better by taking the meds and also restricting myself to lying down in a quiet and dimly lit room.

But no rest for the wicked, I mean the sick that is...I'm kind of dizzy so had dburr help me take my blood sugar. 290! Oops.

Now I have to try and walk around the house WITH a migraine and drink a boatload of water. And not much of the pasta dinner for my sick tummy. Got to bring that sugar down. Maybe pickles will help. Not that I feel like having any.

Have some kind of infection, too. Productive cough, although not a really bad one.

This is really too many illnesses at once and I'm getting kind of pissed off.

Got my latest blood work in the mail. Sed rate is good (I do not understand WHY because I have not been doing so well with the arthritis)...but ANA is back up. Not to its highest but 1:1280 is significant. Blah.

Would someone please give lupus the finger for me? I had to stab both of my middle fingers today in the great effort to get blood for testing blood sugar level. I've got Raynaud's. Hands and feet usually cold and lifeless. Doesn't go well with diabetes test kit requirements.

Poor dburr ; he has to be Nurse Dburr again. I can't be fun to live with.

Reminder to Self

2009-04-22T16:09:00.000-07:00

Put today in the Headache Diary for my neuro.

At least he cares when I get these nauseating, blinding migraines.

I had so much I was looking forward to doing today and it is just. not. fair.

Sigh!

Out cold

2009-03-19T00:03:00.000-07:00

Lupus has caught up with me again. I think I fell asleep around 4 pm, woke up around 9 pm for a very short time, and woke up again now at midnight...and I'm not going to be awake long.

Of course my rosy cheeks look so healthy!

It's my hair that looks bad. I need to have it done but medical crap has put me $$$ in debt again.

A Health Care Access Problem

2009-03-17T03:14:00.000-07:00

Just one of mine ...

I'm in a good mood today, but...

2009-03-01T20:00:00.001-08:00

the lupus isn't. Don't know why it felt like it had to kick my behind, but it's not telling me. Joint pains, pain with breathing, muscle weakness, exhaustion. Of course, could be worse!

Healing thyself

2009-02-21T19:16:00.000-08:00

Healing thyself
beepbeep 2/21/09 06:00 pm
copied from other blog

One reason I wish dburr, the saint who lets me live with him, could move into the home he will inherit is that I would be closer to a decent hospital. However, if he is going to get work where we are now, then we must stay here as far as I can tell until that work is finished...unless we find a good carpool for him at some point. I really don't want to go back to the hospital here. For one thing, there is no food choice. That sounds trivial, but remember I have to eat every 4 hours or so for the diabetes, and it has to be snacks that are good for the diabetes, and also foods I can tolerate for my various conflicting diets. I pretty much know what I can and can't get away with at any given time, except for the diabetes, and now that I have test strips I'm learning that fast. But a hospital that just feeds you what they give you and on their schedule ends up making me very sick. I got by last time because my mom came up, paid to stay in a hotel, and bought me food!

I tend to lie down when I rest rather than sit. There are a lot of reasons for this, some of which I don't feel like sharing, but some of them are that I have two painful long-standing back injuries and I get arthritis often in the joints at the top of my legs just under my tush. But I have a hiatal hernia, a nasty one, so I sit up partially at least when I am eating, a sort of compromise. I also need water with my food. I don't know why food gets "stuck"...could be a scleroderma-type thing, or Sjogren's dryness, or GERD irritation, or whatever. Remember when guys would go around saying "So many women, so little time..." ! For me it's "So many diseases..." I wish I could collect something else instead. Doesn't have to be men, even. Seashells would be fine.

Because I know what I need, and I don't feel like arguing when I'm fighting for my life, nurses with control issues and I tend to really clash. This is one reason I often just discharge myself early! If I'm with a roommate that doesn't allow for me to sleep (or hello fibromyalgia), or someone won't let me turn the fluorescents off (wanna see a lupus flare?), or I can't choose my food, or have water with food, or sit the way I want to, etc., I will get sicker fast in the hospital instead of better. This is why I am often better off at home if I have someone to help me with whatever it is I can't do. I'm lucky dburr seems to find this interesting instead of annoying. Most people get tired of me basically having to order them around so that I will get well asap and become more self-sufficient again.

At the hospital from hell, Nurse Ratchett (name is from a famous book, young ones) would not give me food or drink unless I sat up straight on my painful leg joints, cos nursie knows best. She tried to get me to eat food I was allergic to but I balked there. She kept turning the lights ON (you have to have light to keep your spirits up and nursie needs the light to see where she is going) and I kept turning them OFF so I wouldn't get a worse flare than I already had. What they made me eat gave me diarrhea and then nursie was angry with me for having diarrhea. The list goes on. Basically I just got my oxygen until I could breathe on my own and then got out of there. The worst part, as far as I was concerned, is that since their phone did not permit long-distance calls and my cell didn't work in their building...I could not contact any of my own doctors, and neither the nurses or doctors would contact them for me!

Given the above and also the accelerating deterioration of our health care system I'm really trying to learn how to treat myself at home whenever I can. It really helps that the greatest doctor in the world, my rheumatologist, lets me email him with questions. If I didn't have to fight with Medicare Part D for my prescriptions and could order and read my own lab tests I would do well!

But this latest bout of illness was tricky. I got a chest cold, and not a very severe one, from my sister when I visited the family for my bro in law's bday. She tried not to give it to me but being immunosuppressed I managed to get it anyway. I have a bad history of pneumonia, bronchitis, asthma, and/or lung lupus following colds. So when I started to have a cough I couldn't stop and chest tightness and pain with breathing, I knew I had to do something, but what? I need an antibiotic when I get pneumonia because of the immunosuppression; I can't fight it off myself. But I don't do well with antibiotic side effects so that's my last resort. Also fighting with insurance for the right antibiotic is so stressful I probably would have blood sugar off the map. As it was the infection raised it to 296. My doc considers "danger" to start at 300. Just squeaked by :)

So I waited on the antibiotic and didn't drive the car in case I passed out and tried to keep breathing deeply despite the pain so I wouldn't go low on oxygen. Even though narcotics suppress breathing muscles I took some anyway so I would not have so much pain and wouldn't stick with shallow breathing. Finally I had chest tightness that my rescue inhaler had trouble opening up (I am not impressed with the new non-aerosol ones btw and I really don't think global climate change is primarily the result of use of asthma inhalers...) so I knew there was some asthma involved. Also, the incredible pain began to break through hydromorphone, which is a pretty strong pain killer. I also got very weak, had chills, was a bit nauseated, terrible headache, photophobia, joint pains...etc. Asthma and lupus in the lungs...both treatable with my least favorite drug in the world. I took my last Singulair sample for the emergency and then bumped up the steroids. I got the moon face back almost immediately. This drug and I are not friends. I've had to drown myself with unwanted water to drink to keep the blood sugar within non-hospitalization limits on the steroids. No steroid psychosis, thankful for that. So if the steroids worked, I guessed right, and if not, I have to get myself to a doc., and probably not one anywhere near me geographically.

They worked.

My doc says he trusts me to know what amount of steroids to take and when. I'm so lucky to have him. I didn't always have a doc like this. I'm not going to tell the horror stories now because I'm still pretty tired :)

Anyway, I've been bad about checking in with other ppl's blogs, and I'm sorry. The exhaustion sucks up time. I will try to catch up though!

In other news, California has a budget at last...and it made my local state senator even more infamous than he was previously. Sigh. Wrote about it elsewhere.

With the economic crisis affecting all of the folks who have been helping me to survive and the programs and services I rely on, I know this is not a good time to be in precarious health...and there isn't all that much I can do about it. My attitude now is that I really want to live but I am rushing to try and get some things done I really really really want done before my personal bucket is kicked. I know for a certainty that if I end up homeless and try to live in my car or something I won't last long at all. There are probably a million other likely scenarios that could kill me. It's a weird feeling to know that my country has already let a lot of people who had problems accessing health care die, and it doesn't make the news headlines. How I hate Social Darwinism. I have always believed that where you end up in life has at least something to do with where you start out and what happens to you along the way. It's not all controllable by us. I wish it were, and I know what the Create Your Own Reality folks have to say :) , but I don't buy the whole enchilada. I've seen plenty of people try their little hearts out and end up in bad places. Once in awhile, the random lightning strike hits somebody, and they have it tough.

Btw anyone who knew Dee from the subchapter leaders of the Northern CA Lupus Foundation: I just learned she passed away in her sleep, and her family has ordered an autopsy to find out why. My thoughts and prayers are with her family. I really liked her and will miss her. And no one could have been more motivated than Dee to work at being healthy, positive, and self-reliant. No one. I just don't think she got to create all of her reality, and I'm afraid I'm going to be pretty stubborn about this opinion.

Mirror, mirror

2009-02-15T18:18:00.001-08:00

This will be an alternate site for my living with lupus blog. I can't always get to that site...for reasons I have not yet figured out! Also if I don't have my computer with me, I can't exactly open up iWeb and post...:)