Feeling Helpless

I got a phone call this morning from a gentleman whose wife is currently hospitalized with God-knows-what and he said in addition to what they thought she has (blood disorder, head injury) that now she has lupus. I felt his pain right through the telephone. To watch somebody suffer and not know what to do is one of the most excruciating experiences a person can endure. My family knows this.

Because 2 years ago, I was in the hospital, comatose from God-knows- what and I also have lupus. For weeks, various doctors stood around my bed in ICU, scraching their heads, adjusting medications that at times sent my lab work zinging into the stratosphere and at other times doing no good whatsoever.

I originally went to the hospital via ambulance because I had trouble catching my breath even as I tried to walk across the living room. I felt like a ninny as I reached for the phone to dial 911, but thought, I'd rather it be a false alarm than to die right here, not having helped myself. I was given oxygen en route, and when we reached the ER, I was able to answer their questions, but when I stood up to transfer from the wheelchair to a gurney, my legs buckled beneath me and I fell to the floor, hitting my forehead. I remember yelling, "Goddammit! Sonofabitch!" and then I remembered nothing else. Blackness prevailed. I was, as they say, "unresponsive."

At some point, I cracked open my eyes and noticed I was in a room by myself. I knew I was in the hospital, and I remembered I had fallen and hit my head. "Oh, " I thought to myself with shame, "I'm being punished for cussing."

My family was called. Daughter from her home near me, son from Oregon, other daughter from CA. Meanwhile, the priest was called and I was given Last Rites. (I'm Episcopalian). All this took place over several days, and my family gathered at my house and spelled each other at the hospital. My mother arrived from South Texas. I was unaware of anything; didn't know the passage of time; didn't hear anybody; didn't dream -- in short, nothing penetrated, even the doctors as they poked and prodded, adjusted medications and talked about the color of my urine.

As my daughters spelled each other, one would pass a notebook to the other, and one of the notations was, "Don't pay any attention to anything Mom says. She's out of her head." One time, I mumbled something about "The Korean guards are after me." Was I ever in a Korean prison? they asked me later.
(At the age of 8, I went to Korea to join my father in the US Occupation after WII, in 1946. )

"No, but I remember a Korean military guard in the compound scaring the bejeesus out of me as I was walking to school one morning. He called out to me, "You Christian?" And I said, "Yes." Knowing full well I shouldn't be talking to strangers, let alone and armed guard in a strange country. But I did, and then he spat on the ground, yelling, "Pah! Christians!" and somehow that scared me and I ran all the way to the safety of the school.

So that explained that little history lesson. Later, as I was moved from intensive care into sub-acute care, they wanted me to eat, yet I had no appetite. One of the kids asked, "What kind of food do you want, Mom?" since I was not eating the hospital food. (Sounds like a rational act to me!) And out of my mouth flew the word: "Cowboy. Cowboy food."

Well, old Mom was for sure out of her head now. I puzzled over that, myself, until my mother arrived and my kids told her. "Oh, that's what she called American food when we lived in Korea. Give her a hamburger." Woo-hoo! Cowboy food!

At some point I went home, but I didn't stay long. I was hallucinating, they said. Believing that my friend Joyce, who dropped by to visit, had put something in her pocket, and when I asked her what she had put in her pocket, she showed me she had no pockets whatsoever in her dress. And the topper was, my cat was talking to me. Talking not cat talk, but English.

Unfortunately, I received no Secrets from the Universe in that conversation, but my family hauled me back to the hospital. Things got really fuzzy, because they said I went into another blackout, priests were called again, and doctors warned my family that they might consider a nursing home at best, or funeral arrangements at worst.

Again, I pulled out of whatever it was. And this time, my family insisted on my going to a rheabilitation hosptial until I got all better. And I was well enough to hate the enforced bed rest, coupled with strength-building exercises, and I ate the damned hospital food, longing for a good "Cowboy" meal. I was well enough to yell at the nurse who put an alarm in my bed, to keep me from getting up and going to the bathroom by myself. I snapped that I would call the administrator if she didn't get that out of my bed "right now." And she did. Heh. In the military, they say if the troops are griping, morale is good. I was really full of morale by then.

At last, I came home. This time for good. I had a visiting nurse for a while, and Meals on Wheels for a couple of weeks, until I decided I could get my own meals, thank you.

And they didn't serve Cowboy food.

All this was brought back to my mind this morning when the distressed gentleman called. Bless his heart, he felt helpless, and I told him my family did, too, when I was in the hospital. However, if the other illnesses/conditions didn't kill her now, she would get better when the lupus gets treated.

And that's the bottom line with lupus, I think. It's worse before it's finally diagnosed and treated. I was diagnosed in October of 1988, and by February, I was in the hospital with lung involvement.

It's been a long haul upward since that time, and just when I thought things were okay, this other thing hit me -- but was it a lupus flare? My doctors "don't think so." Will this ever happen again? "Probably not," my rheumatologist, cardiologist, neurologist, nephrologist and primary care physican agree. "Well, what can I do to prevent this from ever happening again?" Shrugged shoulders; even my doctors felt helpless.

So I told my family: "If I ever go bact to the hospital with whatever this thing is, I want you to know it's not because of something I did or didn't do. Something that I ate or drank, or didn't eat or drink, or whatever. Okay?"

And that's the way it's been since June - September of 2004. I don't want to ever go back there again. But who knows? I could cross the street and get hit by a a beer truck tomorrow. I can't live my life on "what if?"

That's essentially it, folks. Do the best you can with the knowledge you have now, and trust that you will get better.

####

My Book is Recommended by the Lupus Foundation of America

Wow! I waddled out to the mailbox yesterday and pulled out my copy of Lupus Now, Spring Edition, and was leafing idly through it when what to my wondering eyes should appear but an ad about my book!
The text is as follows:

Diagnosis: Lupus- The Intimate Journal of a Lupus Patient (PublishAmerica Press, Baltimore 2005; paperback, 216 pp. $19.95) by Marilyn Celeste Morris. When the author was suddenly confronted with symptoms of joint pain and extreme fatigue, she undertook an intensive search to understand what eventually would be diagnosed as systemic lupus erythematosus. Throughout the pages of her intimate daily journal, she takes the reader on a journey from chronic joint pain, frustration, anger and grief for her former self, to her current state of remission. Far from being a list of complaints, the author's pages reveal her unexpected spiritual growth and gratitude for life itself. In addition to this book, the author has written fiction and a memoir.

I had sent 3 copies of my book to the LFA Publications Editor for review about three months ago and had almost forgotten, and yet there it was! Let me tell you folks who aren't writers trying to get your work(s) out to the public -- this little ad is worth its weight in gold! Not only in sales, but in awareness of the disease, if someone should happen upon it, hoping it might help explain their friend/wife/husband's disease because I do let it all hang out. All the griping, despair, depression, swearing -- yes, this little granny lady knows a lot of swear words -- and that was one reason I thought maybe the LFA wouldn't want to endorse it.

But I also shouldn't overlook the positive aspects of baring my soul with this book. It was risky, yes, to confess I went through this disease process kicking and screaming, blaming everybody including God for my distress, and for a woman like me who was raised by an authoritarian father to "not air dirty linen in public" it was a major step.

Oh, but I lost the train of thought, there for a minute. I was going to tell you about the positive aspect of writing this book and reliving every single minute of my progress. I did find an inner strength I didn't think I had.

Don't groan, here, this isn't going to be one of those mushy messages so many people love to pass around on the Internet, like the one I really, really hate, which concludes with the words kind of like, "If you love God, you will forward this to everybody you know." Now, I consider that Emotional Blackmail, and just to be perverse and tempt God's wrath, I hit the delete button. And I'm still here.....

Anyway, I did find a new appreciation for life itself and how little time we all have on this earth. Discovered there is no room for self-pity (well, maybe every once in a while, just for a few minutes -- after all, I'm not a saint) or resentment. I'm saying this from the perspective of having come through the roughest part of this disease, and in remission, but in re-reading my journal entries I can see that a tiny bit of acceptance beginning to take root, and I'm hoping readers of my book will be able to do that, too.

Someone who had just read about my lupus book emailed me to wish me well, and put a new spin on the old adage, "When life hands you lemons...." etc. His take on this saying says it even more succinctly than "make lemonade."

Okay, my new saying about what I've learned from this disease:

When life hands you lemons, ask for tequila. (Ole')

Is lupus inherited?

I read the newspaper first thing in the morning while savoring my first cup of coffee. I usually skim over some of the articles/columns, but this morning, one caught my attention as it contained the word "lupus."

A woman had written to the doctor's advice column that her son was about to marry a woman who has lupus. She was afraid her future grandchildren might inherit the disease, and she closed her remarks with "she has very pale, white skin."

Of course, the doctor addressed her concerns about whether or not her disease could be passed on to her children. Maybe, maybe not. But that should not prevent her from bearing children, as the survival rate for lupus presently is very high.

Then he addressed her concern about the girl's pale white skin. "Her skin color is not an indication of lupus."

Well, he was correct, but he needed to add something to the effect that "her pale white skin coloring is a reflection of her avoiding the sunlight, which can trigger a lupus flare. "

This is why we must be careful in reading material such as this and taking it as "gospel." While the article may be accurate and informative, newspaper space constraints probably prevented the doctor from providing a more complete answer to the woman's question. We forget that sometimes we get just enough information to scare us, or the answers cause us to ask even more questions.

For more complete and up to date information, nothing beats the official website, www.lupus.org. Rely on it, and if you have questions, be sure to ask.

More Anna Nicole

I thought they would release the autopsy reports on Anna Nicole Smith today, but either I missed the big announcement, or they didn't have them released today, after all.
I did see one brief sound bite from some guy in a doctor's white coat announce solemnly, "A person does not die suddenly from lupus." And that was it. Nothing followed up, no more explanation.
And he is correct. My point in an earlier post was that if the woman was running a 105 degree fever, why wasn't she in the hospital? Why did those around her seemingly ignore her soaring fever and let her die? She didn't die suddenly from lupus, of course. There were bound to be earlier signs of some lupus activity, such as lung involvement (coughing, aching in the pleura, etc.) or kidney involvement (retaining fluid) or just plain aching in the joints, all the time, despite taking aspirin or other OTC products.
Maybe she had taken so much of the drugs her own judgment was cloudy and she couldn't recognize the signs of a serious problem developing over a few days or hours.
But her retinue surely could have seen the signs that she was seriously ill, despite her protests. I didn't want to go to the hospital a couple of years ago, but my son saw the handwriting on the wall, and by the time I reluctantly wobbled into the ER, I was more than ready to have somebody save my life. A rational decision, don't you think? And my son certainly saw the signs of trouble and bullied me into climbing into the car for yet another trip to the ER. And you know what? That was his job. To help his mother. If I had been married, I would have expected my husband to do the same thing. Evidently, those around Anna Nicole Smith didn't give a darn about her. It would have been too inconvenient to have their meal ticket out of commission, pardon my saying so.
But I have looked at this situation with a jaundiced eye ever since she died. And please, somebody, tell us what happened to cause her death. "A Broken Heart" sounds so.....dramatic, and she was mourning the loss of her son -- "beloved son' is the phrase I kept hearing every time his name was mentioned -- and lupus and stress are not compatible. A lupus patient should try to have as little stress as possible, and along with her son's unexpected death, she had just given birth to her baby daughter, which in itself is a stressful event. A double-whammy; a birth and a death in close succession.
But again, we should keep in mind that lupus does not cause sudden death. There were signs.
But nobody was willing to see them.

Doctor's Visits and Expenses

When you have a chronic illness such as lupus, you make a lot of trips to the doctor's office. You have lots of blood work done, and you take lots of medications. At my quarterly visit today, my rheumatologist peered over his glasses as he flipped through my chart and pronounced, "Everything looks good."

The best words any patient would want to hear. Then followed the usual, "Keep doing what you're doing, stay out of the sun, and remember to take your meds." Then the inevitable pay-out at the nurse's station which adds a bit of crunch to the budget, but at least it's just an insurance co-pay and not the full amount.

For those who are unfortunate enough to not have any kind of health insurance, the road is rough. Not may persons can fork over $80.00 or more for a simple office visit, and the medications are costly, too.
So what does a person in that situation do?

I was asked that very question one day last week when a person called me as the facilitator for the local lupus support group; she was new in town and wanted the name of a doctor. Well, I had to tell her that if she had no health insurance, she might have to go to the County Hospital System. Words nobody wants to hear, but it's necessary.

I was a patient of the local County Health System for quite some time, when I was out of work and had no health insurance, and bless their hearts, they do a great job in seeing to the needs of packed waiting rooms every day, dispensing life-saving prescription medications at a fee even the poorest can afford. And if they can't afford the lowest payment, there are arrangements that can be made there, too.

Sure, you have to stand in line to register, to see the doctor, to pick up your medications. You soon learn the best time of day to go get your meds (definitely not Friday afternoon!) and when the doctors are less pressed for time (any day but Monday). Pretty soon you adjust to the routine and learn to settle in for a couple of hours, even when your appointment time was 8:00 AM and you broke your neck driving through rush hour traffic only to discover that you might actually get in to see the doctor around 3 PM.

The Emergency Room is even worse. An exercise in patience. I wouldn't advise anyone to use the county ER as their primary care physician for routine matters like checking blood pressure, which can wait until you have a regular appointment at the hospital/clinic. However, one day I had to go to the ER for a seemingly routine matter: I had pink eye.

And let me tell you, pink eye is painful and looks awful. I had rubbed my eye so hard by the time I got there that the triage nurse took one look at me and almost wrote "physical altercation" before I could blurt out the words, "I think I have pink eye." But they are trained observers, and it surely looked like I had gotten on the wrong end of a fight. I was finally called into the treatment room and emerged later, much later, with eye drops and a prescription for same.

Quite frankly, my own primary care physician's office is almost as crowded, and if you don't have an appointment, the "work in" situation is chancey at best.

So I shared all that with the woman who called and added that some of our best rheumatologists volunteer a day or two a month at the county hospital, so she would be getting good treatment for practically nothing.

Still, there is that stigma of having to go "on charity." Let me tell you....You can't pay the rent with your pride. You can't eat it, or drive it. Pride is the very last concern when you're faced with a choice, literally, between life and death. Ignoring your lupus symptoms and/or eliminating those life-sustaining meds will get you to the end of your life much quicker than if you swallowed your pride and accepted "charity." Remember, your goal is to live, and live well, even if you have lupus. It can be done.

Anna Nicole Had Lupus????

I just have to say it. Lord help me. I've been following this Anna Nicole Smith and her death soap opera, about half-way paying attention to the television "new" programs that blared into my kitchen tonight.

Same old same old, I thought absently, until my ears heard the word "lupus."

Anna Nicole had lupus, one of her intimate circle declared, and she didn't want it ever to be known.

The young announcer said earnestly that "lupus is an incurable disease of the immune system" and then the scene switched to some white-coated doctor who intoned that "yes, if she had lupus, it is extremely painful, and she might have been on some high-powered drugs to control the pain."

Well, uh, pardon me for asking, but who was treating her? Why wasn't her doctor contacted when she began her 105 degree fever? It was my experience with lupus that when I finally went to the doctor for a "little fever and pain in the back" he immediately put me in the hospital before my fever spiked to 105 degrees as I was checking myself into the hospital. Just in time, I thought, as I crawled into the waiting bed. Then the nurses began IV lines of antibiotics and Lord knows what else, and a couple of days later, I was ready to be dismissed.

Now, if this blonde beauty was in denial about having lupus, she did herself in by ignoring the symptoms of high fever. And where were her so called friends and lovers? Geeze, Louise, if I saw a friend with a fever that high, I darn sure would haul her ass off to a hospital, pdq, whether she wanted to go or not. To not have done so was criminally negligent, in my humble opinion.

Why haven't I heard any more about this? If this is true, where is the outrage that she died needlessly, untreated or mistreated, or those around her ignoring her symptoms until it was too late?

If she did have lupus, why wasn't she being treated with steroids or anti-malarials, as most people with this disease are taking on a daily basis? Maybe she was taking steroids several years ago, which might explain her weight gain. Believe me, when I was taking prednisone, I was ravenous and gained a lot of weight. Weight which is almost impossible to lose, but being the "star" that she was, she had to lose it in a hurry. Did she quit taking the steroids, then? And substituted the methadone to control the pain? All for the sake of "looking beautiful?"

Maybe this was not true. I guess we'll never know for sure, if her instructions were to tell no one about it. As if having an autoimmune disease was something beautiful people couldn't possibly have. Let's just look the other way, then, and continue to treat the pain with illegal drugs, and ignore any warning signs that meant the disease was in full flare, calling for immediate medical attention.

I am jolted by the news today of one of our lupus support group members, whose funeral is set for tomorrow, as is Anna Nicole's. This ordinary woman was in the hospital for months, being treated as best as anyone can with this disease, and she still passed away. But in her case, she recognized the fact that she was very sick and needed medical help.

In Anna Nicole's case, evidently nobody wanted to admit the truth and call for help before the fever reached its high of 105.

And that's a shame. Who is going to tell her baby when she's older that her mother died needlessly? Or will they continue to keep the deep, dark secret and denial?

I guess I just don't understand. But then, to quote a line from The Great Gatsby, "The rich are different from you and me." I'll continue to be poor and still walking around, then, if that's a choice.

It will be interesting to follow this drama. Sad, but interesting.