Thursday, September 22, 2011

The Cards We're Dealt: Living with Lupus Erythematosus

I've finished the rewrite of my first book about lupus, using a few of my journal entries and adding comments by other "Lupies."
I'm hoping I can embed the cover in this post and a small excerpt.

My Search Begins

From My Journals

VICTIM: A living being used as a sacrifice in a religious ceremony, a person or thing destroyed or hurt in the pursuit of some object; one injured or killed by some misfortune or calamity; a sufferer from mental or physical disease; a dupe.

SUFFER: To feel (up-bear) what is painful, disagreeable or distressing; endure with pain or distress; as to suffer a wrong; to feel or bear upward, as to suffer pain; to be affected by, exercise, undergo; to allow; permit; To experience pain, loss, distress. Endure, support, tolerate.

I searched for a label to pin on my puzzling symptoms:

The inability to type all day at a computer. The inability to sit, stand and walk for eight hours in a day without extreme fatigue. The inability to understand and implement simple verbal instructions due to a puzzling and devastating “fog” that enveloped my cognitive functions at crucial moments. And, if it hadn’t been so critical to my job performance, the temporary loss of verbal ability resulting in garbled and stuttering answers to my supervisors’ questions. Needless to say, I was “let go” several times.

Some diseases begin so dramatically, so definitively, that there is no question in any physician's mind as to the diagnosis. A lump in the breast calls for immediate biopsy and lab tests. A sudden sharp pain in the chest sends the patient to the emergency room where high-tech equipment confirms the presence of heart disease.

Not so with Lupus. This disease presents itself with such a myriad of symptoms that its sufferers doubt their sanity. Pain, stiffness in the joints surely must mean arthritis-- or, as several of my former physicians dismissed it casually, “After all, at your age, just learn to live with it.”

Sudden and dramatic weight loss, a boon to any woman struggling with her self-image ("Well, I see you've lost a lot of weight recently. Good for you; keep it up.”) Instead of an alarm that something is wrong. Other symptoms, such as extreme fatigue cause even the patient to question herself. “Tired? How can I be so tired that I just want to lie down and not even move? I must be lazy. No, I really have to nap before dinner.... what is wrong with me?"

Weeks, even months pass, with no improvement. Symptoms worsen. After the family physician, his knowledge exhausted, extensive lab tests reveal nothing unusual, the patient is labeled a hypochondriac. There is really nothing wrong, she is told.

But the pain makes believing this difficult. While seated on a stool in the shower, unable to stand, the woman notices in horror that large clumps of hair are flowing down the drain. When she manages to pull herself together for some social event, she teeters on the brink of exhaustion only to be scolded on the way home by her husband/companion/family:

"I don't understand how you can be so tired all the time. The doctor says there's nothing wrong, with all the expensive lab tests...." leaving the rest of the sentence unspoken. “It’s all in your head.”

After a time, after months and years of unrelenting, unforgiving, baffling, excruciating, agonizing, subtle, intense, bouts of fatigue and other odd symptoms. resignation sets in. If relationships are good to begin with, the family considers the patient somewhat “strange,” and tolerates her odd behavior pattern with dark humor, somewhat like keeping a crazy maiden aunt locked in the attic. Already strained marriages or other relationships, on the other hand, crack wide open and the partner's psychosomatic “illnesses” provide a good excuse for leaving the marriage or severing the relationship.

Even within the community of family or friends, an undiagnosed Lupus patient is left to cope as best she can --— feeling useless, burdensome to others, sometimes to the point of suicide.

After all, nobody can believe that this person who shows no obvious physical signs of disease—-is indeed, ill - in fact, she is ‘glowing with good health," apparently, and gaining weight, to boot. The weight gain, moon face, trunk swollen with an extra twenty or thirty pounds, on average comes after massive doses of Prednisone quells the initial pain of the disease but the toll it takes on one’s body, and emotions, begins to show. A young woman who had been a model in her pre-Lupus days, gains one hundred pounds, breaks a hip through necrosis, loses her marvelous long black hair, can’t find work due to the pain involved in simple movements, moves back to her parents house, and she becomes suicidal. There is nothing left before her except more pain, more days full of idleness, seeing her swollen body day after day negating the happy, vivacious creature she was a few short months earlier.

I was a little older than the typical Lupus patient, but I fit the other profile. Lupus patients (or, Lupies) are busy people, working and playing 25 hours a day. They don’t know when to quit; they are perfectionists and they have an unquenchable interest in nearly everything.

Their pain threshold is astonishing; I was typical in the way I ignored the first symptoms until they became almost unbearable. Likewise, the tolerance for stress. My motto was, “What stress?” and I was really quite unaware of the tremendous amounts of stress I had been under during most of my life, particularly the last few years.

When I told people that I had Lupus, I got one of several reactions: “What’s that?” or, “Lupus? Don’t people die from that?” “Do you throw fits or something?” One callous person even asked, “Is it fatal?” and I shot back with, “Life is fatal. “

Bless my friends’ hearts; they understood when I had to cancel a social event at the last minute, because I was “crashing” where I had been “fine” a few moments earlier.

How did this disease come to reside in me?

Heredity had a large part in my illness: My mother’s mother, Emily Richardson, was half Native American; my mother was born in Sels, Arizona and spent the first three years of her life on the Indian Reservation there. On my father’s side, I claim a great-great grandmother, Pernicia Blackwell, who had some Seminole Indian background. (Native American Indians and African-Americans are prime targets of Lupus.)



I just read what I wrote way back in Sept.

You’d think that things (and I) would have changed.

NOT! I still feel:

Less than, shame, fearful, deprived, restless, irritable and discontent, lonely, definitely so, at this time, resentful, jealous of others’ possession, talents, and praise.

I’m tired of these feelings,

I’m tired of being poor – or of feeling poor. Not managing well? I need – God, you know I need to be able to make my bills (on time) and still have enough left over for medical emergencies, car repairs and a movie out, every so often, without feeling fearful.


My health problems won’t go away. You’d think I’d be reconciled to them by now…I’m not “cured” but “healed” in spirit, at least. Making peace with Lupus at least most of the time.


“Retreat” is probably more like what I’m doing.

I’ve been in worse spots than this, and walked through it. I remember when I was in the hospital. Fired. Looking for a job while carrying a cane and wearing a wig and going home each day crying with pain from my swollen legs…rubbing ice on them. God carried me thorough that time…why do I disbelieve now?

I need to grieve. I need to rage. I need to cry for my soul. I have been wounded in many ways, over many years.

I feel my energy is not being focused, but scattered. What is important? What is necessary? What do I need right now? Rest? Probably. I have drawn on my reserves too often, like an overdrawn bank account. There is not much left to draw from. But I ask: “Is it Lupus or is it life?” Is this normal to feel so down – discouraged?

I will get through this.

And come out stronger.



Why am I still struggling with my health when I’m supposed to be in remission?

A trip to the ER early Thursday morning once again shows me that I’m vulnerable.

ASTHMA? Isn’t it enough to have Lupus, diabetes, high blood pressure – what the hell am I doing now with ASTHMA?

I can’t stop living in order to live. I have plans for my future. And these plans do not include illness. I have been called stubborn; that’s not all bad. Another word is perseverance. I know what is important to me, and by God’s grace I will do it. I am doing it. I’ve been through much worse than this.

I have much to be grateful for. My friends and family. Their concern and help.

My fear is that something so trivial might kill me.

More than that, I might die before I’ve accomplished my tasks here on earth.

Surely God has a reason for my being here.


Because of Privacy concerns, I cannot include any of the Lupies postings in this blog. But I can post this excerpt:



When I became too ill and fatigued to attend a local Lupus support group, I turned to the Internet and found a yahoo group called “LUPIES.”

Here was another way to get support and information. I began skimming through the message board, wondering if it would be worthwhile to commit myself to this anonymous group of women. I discovered a pleasant surprise:

These women, from all over the globe, (Australia, Canada, Philippines, and Texas (lol) are bright, articulate, compassionate and knowledgeable about this disease, even if much of it comes from their own experiences in dealing with SLE. I must add here that occasionally, a male of our species wanders into the group, and of course, he is welcomed. However, they are few and far between, and many times, it seems they have found the information they are looking for, and they no longer post. So, Lupus is mostly about women.

They shared their experiences, bad times, good days, vented about uncaring health care professionals, helpful and unhelpful relatives, and how they cope on a daily basis with this enigmatic illness, where there seems to be no set pattern of progression, methods of achieving remission and recovery, and how badly they miss the women they were before Lupus.

I laughed, I cried, I empathized. I then began posting about my own experiences; the good, the bad and the ugly. We found common ground in being disappointed with the vast majority of the medical community who seem surprisingly unaware of how Lupus can be diagnosed and treated. In other words, I say with tongue in cheek, we have a common “enemy” besides SLE.

After belonging to this group for about a year, I proposed to the owners of the list that I wanted to re-write my first book about Lupus, this time incorporating messages from our membership. Those who cared to participate were sent a Contributor’s Release for signature, agreeing that I could publish their remarks. The owners, Sandra, Barb and Mary Mike, agreed, and I began revising my first book, and adding comments from Lupies.

As I read the heartfelt entries and tried to assign categories for ease of reading and understanding, I found that many of the entries contained remarks about several issues at once…. We are sick people, looking for help and understanding about many issues, and many times, they are all rolled together, like an enchilada on the menu of your favorite Mexican food restaurant. Or at the Chinese Buffet: One from Column A, One from Column B.

We really don’t have an Al la Carte Menu. You take what is given.

So, here are some of the entries taken from our Lupies support group over a two or three year period. Looking at unsorted, impossible to categorize messages will be like a treasure hunt for the reader. You may stumble across something that you recognize as being exactly how you feel, or you learn some new information about this disease.

I have permission documents signed by the participants, so they know their words will be quoted as written, from the heart, with only an occasional edit by the author. The reader will notice that some posts are longer than others; and that a few people post regularly.

I’m not playing favorites by choosing the messages for this book. Some Lupies are more verbal than others. Some drop in only occasionally, but with great insight to a newcomer’s questions. The only “rule” is: All of the participants have Lupus or are suspected as having Lupus, and are willing to write to others and expose their feelings, their pain, and their depression. They also offer hope, and “helpful tips” on coping, or small notes on alternative medicines. Each person is welcome to the group for their experience, strength and hope. And, yes, for their complaints, rants, thoughts of suicide, and other issues. Sure enough, the moment someone posts that they want to “give up,” several others add their voices of “me, too!” and relate how they got through that particular phase of grief.

Yes, grief. We have lost our former selves. We have lost our jobs. We have lost or alienated our families and friends. We deny, we bargain, we finally accept. That doesn’t mean we like it.

I also noticed postings that said, more or less, “You play the hand you are dealt. It does no good to ask for different cards, a re-shuffle, so to speak. You were dealt a hand you didn’t ask for. It doesn’t matter whether you wanted it or not. It’s yours. Now, make the best of it.”

I hope you gain some insight into this disease, whether it is yours or you are reading to understand a loved one’s struggle. God bless you if you are. We need support through this process that is ever changing, ever challenging, and ever-misunderstood.


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