Friday, October 21, 2011
Not to worry. I'm put on prednisone, once again. Small amounts, this time for just a couple of weeks, and then I taper off.
Okay. That's not too much to put on a lot of weight. And the vasculitis fades.
However, I also encountered a UTI.....which calls for antibiotics.
Not a great combination for me.
So I had a follow-up appointment, everything is back to what I laughingly call "normal."
And I casually mention that my heels hurt. Just my heels.
Doctor takes a look, runs his hand over my heels, then up to my toes. Heels hurt like heck. Rest of the foot is okay.
"Bone spurs. Get some inserts for your shoes. And don't go barefoot."
Whoa, hold on there, pardner. I LOVE going barefoot in the house. Even in the wintertime. I will wear warm socks when it's really cold, but otherwise, I'm shoeless.
I manage to croak out, "Oh, No."
He says it again. So I'm defeated. I don't want to hurt any more, either.
So I stopped by Wal-Mart and got some nice, comfy houseshoes with a good heel support, and some shoe inserts, three pair in a nice package. I put them inside my favorite shoes and went off to another doctor's appt. yesterday.
And I'm amazed at the difference. My heels don't hurt.
At last. Simple.
For a complex problem, a simple solution.
Thursday, September 22, 2011
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.
NOW, SOME STORIES AND MESSAGES
FROM OTHER LUPIES:
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.
Now in all eBook formats!
Print form to be released soon.......
Tuesday, August 30, 2011
And if dealing with a flare isn't enough, there is the continuing saga of the Social Security mess made when I made a simple request to file for disability.
I was, for some strange reason, treated as a new SS Recipient, with a welcome and everything. Trying to unravel that error involved three trips to the local Fort Worth SSA office, and today I discovered I no longer exist in any pharmacy files. I know, because Walgreen's had no information on me, and I couldn't get my Lantus.
Besides having lupus, I also have diabetes, and must take Humalog during the day and Lantus at night. It was time to refill the Lantus yesterday. Son went up to Walgreen's and they said I wasn't in their records. Have I died? Evidently.
WalMart gave me a refill of amitryptiline but charged $10.00. I will get reimbursed, I heard when I called my Medicare Provider, Secure Horizons. After some time of clicking and typing heard on the other end of the phone, they said it was all okay, now.
Until the next time Social Security decides I don't exist.
If you want something really messed up, go to any government agency. Tell 'em I sent ya.....
Thursday, August 4, 2011
I'm praying the air conditioner holds out and continues to keep my house cool. I hate to go outside in this heat, so when I have an errand to run, I do that in the early morning, when it's "cooler" -- say, 90 degrees or so.
I know I sound like a big baby, but I literally cannot tolerate the heat.....my body rebels and I might find myself in the hospital if I'm not careful. I also find myself getting kind of paranoid about possibly being stranded on the road if my car conks out....I can hear you asking, "What about the winter time? Wouldn't you just about freeze to death if you were stranded in the snow?" Well, yeah. But I would hope that I have enough good sense to wear protective clothing, maybe even throw a blanket in the back seat, and get out of the biting wind by sitting in the car.....
It's soooo much different in the summer heat. You can't remove any more clothing than what's covering you now....there are laws about that. You can't sit in the car while you're waiting for help -- that would be counterproductive, since the car would just block any vagrant, although hot, breeze. And, anyone with lupus MUST stay out of the sun.
So you can see why this season is hard on me. And on anyone who has lupus.
I'm waiting for October. It might be cooler by then.
Monday, May 30, 2011
At the third visit, we got a doctor who knew what he was doing. "It's bulging discs in your spine," he told him.
So he's now on Tramadol and seeing a specialist, who, God help us,. will no doubt order another MRI when we visit his office tomorrow. It seems each doctor wants his "own" test results, and this orthopedist seemed to think it's something other than disc problems, perhaps a pinched nerve.
Meanwhile, I am coping as best as I can, hoping to stave off a visit from my own medical nightmare, Lupus. I've been getting as much rest as I can, between fetching and carrying, and the house shows it. I'm fretting over the state of the house -- needs a good cleaning, but I can no longer do anything more than light housekeeping, and I sure can't afford a cleaning service.
I'm having overnight company on June 8th, before I go to OK for my high school reunion.
This is MY goal. I can't make my son's goal for him; that's between him and his doctor.
I'm so glad I know this. While I am concerned for my son's health, I am also remembering that if I'm knocked flat by a lupus flare, I'm no good to anybody.
So, lessons learned the hard way.....Take care of yourself. There's only so much a person can do.
My friend just might have to arrive to a house in disarray. And that's okay. I know she's not coming to see how I keep house, but coming to see ME. An old high school friend.
My job today is to just breathe.......
Tuesday, April 19, 2011
We thought we knew, but we didn't count on getting prescription eye drops for pre-op and post-op use. So we went to our friendly neighborhood Walgreen's and asked the clerk to see how much this will set me back.
Heh. Too much. Over $160.00 in copays for three kinds of eye drops. The only good news is, I can use them for both surgeries. Big deal.
So I'm calling the dr's office to beg for samples. The tech implied that she might be able to get me some samples. I called the office yesterday and left a message for her to call back, but you all know it's the squeaky wheel that gets the grease.
I'm kind of bummed about the whole thing. One is the cost, of course. Another is believing that I'm really getting old.....which I am....and a third is, I don't do well with any kind of sedative. I tend to throw up. A lot.
Oh, and my blood pressure was really LOW. It is normally 120/80, but yesterday it was 90/60. Should I be concerned? The tech didn't say much, except that my heart rate was high. Can you say, "Anxiety?"
Oh, and btw, I asked the tech about the "wrinkle" on the retina on my left eye. Asked her if the doctor could fix it in this surgery.....
Heh. Of course not. I'll have to be referred to "a retina guy."
Trying not to cross that bridge before I come to it......
Who has more fun than a Lupie?
Wednesday, April 13, 2011
Wednesday, March 9, 2011
So I had made an appointment with a neurologist to see what was going on.
And then the symptoms stopped. No more eye blinking, no more auras.
So for that I was glad. Didn't need the hassle of yet another referral to yet another doctor.
Until.....this week. They're baaaaaack.
Concensus among the Lupies yahoo group is the aura is probably caused by a migraine (painless) caused by stress, and they're probably right. I had been to Wal-mart to pick up a prescription and they had ONE person at the prescription counter. I waited 30 minutes in the drive through until I decided to hike into the facility and get my refill in person. And there was a line of six people. So I just sidled up to the person behind the sign that said "Consultation" and I said, as clearly and calmly as I could, "I know this is not your job. But I have been waiting for 30 minutes in the drive-through lane, and I would like to pick up my prescription NOW."
And she dropped what she was doing and went over to where the refills were stored and returned with my prescription. I thanked her as civilly as I could and returned home.
It was about thirty minutes later that my right eye developed the aura that was intense but beautiful(!) and it lasted for about half an hour.
Just the same amount of time I boiled over not getting my refill picked up.....
And as soon as the aura faded, my eyelid began to twitch.
Stress, huh? Just what I don't need.....
Tuesday, March 1, 2011
This morning, after I finished taking my handful of necessary meds, I felt a strange tingling, then a feeling of numbness along my left leg, my left arm and hand.
OMG, I'm having a stroke, was my first thought. Yep, always go to the Worst Case Scenario, and then the REAL explanation won't seem nearly so bad. Right?
I then went to my computer to check my emails, and sure enough, there's an email from a fellow Lupie on the board, telling me about peripheral neuropathy.
Now, I have peripheral neuropathy in my feet, since I'm also a Type ! diabetic, so I'm acquainted wiith the feeling of pain/numbness/tingling if I don't take the Flexeril for a day or two. Of all my meds that I refill faithfully, this is the top one. I can do without the Plaquenil for a day, or the high blood pressure med, even, for a night, but oh, I can't do without the Flexeril.
I had tried Neurontin and had an adverse reaction after two weeks. I won't go into details, aren't you glad -- because I think I've already blogged about it earlier. Anyway, I told my rheumy of that awful experience, so we brainstormed on what type of med I could tolerate, and landed on good old Flexeril, which I had taken a long time ago.
So, long story short, now I know, thanks to the online support groups called LUPIES, a yahoo group, I have the information I needed to deal with this latest odd syndrome.
If you're reading this, and are not in a support group, go online to LUPIES@yahoogroups.com . You'll find answers to your questions and a whole lot of understanding.
Saturday, February 5, 2011
Can't say I blame them. I haven't been anywhere since Tuesday morning, when we got the first blow of a vicious winter storm. Ours took the form of high winds, thunder and lightning, drenching rain, and then -- omg, sleet and freezing rain. Nobody was going anywhere on Tuesday morning. Or Wednesday. Or Thursday. Or Friday.
Today, I see some thawing on the roofs; the sun is out. When it reaches above freezing, I'm going to the pharmacy to pick up my prescription and other medical necessities. They tell us this respite won't last too long; we're supposed to get more snow tomorrow -- Super Bowl Sunday, and then on Wednesday, we'll have another Super Storm blow through.
I'm wondering if my poor lupie body is reacting to barometric changes? I ache all over. And my ribs occasionally scream at me -- possibly an inflammation of the rib cartilage.
In the life of a lupie, it's always something. I'm just grateful things aren't any worse.
Friday, January 28, 2011
I'll tell you, that stuff really works. My hacking and whooping went into mere coughs and sneezes in a week. Fine, I thought.
Heh. I forgot Lupus has her own rules. Just when you think you have a health problem whipped, she raises her ugly head. The cough and congestion came back. With a vengeance. This one was worse. I kept pouring the Mucinex DM religiously; my son joined me doing the same. Our house sounded like a tuberculosis sanitorium. (You young 'uns probably don't know about that....don't know if they even segregate tb patients anymore.)
So I toughed it out for another 10 days, dragging myself around, until I began running a fever. That's it. I'm in trouble when I run anything over 98.6. I mean, anything over 98.6. My "normal" temp is around 97.0 so if I'm a bit over that, it's a fever.
I called my doctor and got in two days later.
She checked me over, asked some pertinent questions, and then announced, "You've got bronchitis."
No surprise there. One of my earliest memories is of being in bed with a sheet "tented" over me, with warm steam directed at me. I had bronchitis every winter until i was about 12, when I skipped one winter with that little condition, and I was declared "over it."
Until I got lupus, that is. I'm hit in my lungs or pleura or bronchial tubes every time I have a flare. So when I began running a fever, I hauled a** to the doctor's office.
She prescribed a Z Pak and within 5 days, I was doing soooo much better.
I still feel kind of shaky, but that's better than hacking up a lung every five minutes.
And I've got a big supply of Mucinex DM on hand, just in case.....Winter isn't over yet, ya know.