ROBDOG!! Stop squirting out the toothpaste!!!!
As you can see, the bathroom is not fully functional, so please excuse yourself if you're in need of relief. You are welcome to read my In the MAGAZINE RACK you'll find some facts and other important information I've collected concerning Systemic Lupus, along with my own personal thoughts -- both serious and humorous. Maybe you can relate to these, find the answers you seek, or help you to be more understanding of someone you know.
they are what they are." ~ Dr. Robert Anthony
THE MAGAZINE RACK
The Hyperchondriac's Top Ten Complaints
The Lupus Research and Care Amendment
A Note To Those Without A Diagnosis
For years, everytime I went to the doctor for one of my weird problems, they'd always tell me the same thing: Not a one of these "professionals" ever came right out and called me a hyperchondriac, but hey, I'm no dummy... I know black from red!
I have this funny feeling I can't explain.
A distraught patient phoned her doctor's office. Was it true, the woman wanted to know, that the medication the doctor had prescribed was for the rest of her life? She was told that it was. There was a moment of silence before the woman continued, "I'm wondering, then, just how serious my condition is. This prescription is marked "NO REFILLS."
I don't know about you, but I'd sure feel better if someone would send me flowers once in a while!
Send someone a flower today! But please click your browser's BACK button to return here.
Should this list sound strangely familiar to anyone, please know you are not alone. If you have been told you are perfectly healthy and to stop worrying, I suggest you find another doctor... and another... and another. I was told by countless physicians for many years that there was nothing wrong with me (physically) and was even referred to a psychologist. But when I woke up blind in my left eye one day, they had no choice but to take me seriously!
I have to wonder if many, or maybe all, so-called hyperchondriacs actually have lupus!! It's a strange disease and very difficult to diagnose unless you are fortunate enough to find a doctor who is very well-educated on SLE. Most physicians only know of a few basic symptoms and the initial blood test performed, but beyond that, they know absolutely nothing.
Only about 30% of lupus patients have what are widely known as common symtoms of SLE, which means the other 70% have different symptoms which many doctors do not recognize as being significant. Many lupus patients have normal or near-normal lab work, which is also very deceiving to a doctor without adequate knowledge of the disease.
Lupus is a disease with symptoms which mimick the symptoms of other diseases. It also causes a wide variety of secondary conditions, many of which have over-lapping symptoms. This, too, makes a proper diagnosis difficult.
For instance, a person may be diagnosed with Fibromyalgia. She may very well have Fibromyalgia, but it may be systemic lupus causing it... or it may not. A person can have any one of the many secondary conditions common to lupus, and NOT have SLE, yet often the secondary condition is recognized without identifying the under-lying cause.
A recent study I read concerning the mis-diagnosis of SLE included a percentage of at least 2 in 10 patients who are diagnosed with Lupus actually have Fibromyalgia instead. The need for advanced and more adequate Lupus testing and greater education for our physicians on SLE is tremendous. I cannot urge you enough to simply copy and mail the pre-typed letter I have available for our Senators. This is a Federal Bill, and you will therefore need to send it to the two National Senators which represent your state in Washington D.C.
Here are a few facts about Systemic Lupus obtained from the Lupus Foundation of America (LFA): The majority of lupus patients experience symptoms three to ten years prior to being diagnosed and many are referred to psychologists at some point during the process.
Lupus suffers more from lack of awareness than any other major disease.
Approximately 1.4 million Americans suffer from Lupus; and this doesn't include those from all the rest of the countries in the world!
Lupus is NOT infectious, NOT contagious, is NOT related to cancer nor any other disease.
5,000 Americans die with lupus each year, but 1 out of 3 deaths could be prevented with earlier diagnosis and proper treatment. Lupus attacks more people than Multiple Sclerosis, cystic fibrosis, sickle cell anemia or leukemia and is every bit as horrible. Yet, more people are familiar with all these other diseases than with lupus.
Lupus can cause a person to have a FALSE-positive serum test for Syphilis, but this will be determined as a false-positive by a second blood test. The explanation for this is quite detailed and I will not go into it here, but please note that lupus is NOT related in any way to Syphilis nor any other sexually-transmitted disease. As noted previously, lupus is not contagious nor transmittable. If you would like more information on false-positive blood tests caused by lupus, please e-mail me and I will respond with the explanation.
Lupus strikes women 10 times more often than men, and usually occurs during child-bearing years. Among the common triggers of the disease are: Childbirth, sun bathing, excessive exercise, and infections. Lupus can appear in children, and physicians are realizing more and more that many adult lupus patients were probably born with the disease, due of the patient's past medical history indicating early disease activity as young as age three.
Issy's Lupus Information Center
I have created a page designed specifically to answer a great many of your questions about Systemic Lupus. I have done extensive research to provide my guests with Lupus information and little-known facts. This page consists of such topics as:
Though I make light of this condition in order to keep my own spirits up, I apologize if I have offened anyone. That's certainly not my intent. I simply hope to help others find joy and laughter in spite of chronic pain.
Probably the most difficult thing for lupus patients is the inability of people without lupus to comprehend the magnitude of the disabilities this disease presents. No one but another lupus patient can possibly understand what we mean when we use words like: for there are no words to describe what we truly feel. Some days, it may take me 15 minutes just to put my clothes on, because I have to keep laying back down for a few minutes.... put on one sock, and rest for a few minutes... put on my jeans, and rest for several minutes... and so forth. I am having one such day today. Just this morning, I was simply trying to zip the zipper on my son's back-pack, and though I finally managed to accomplish this feat, I was exhausted, shaking, and broke out in a sweat. Go tell someone who doesn't have lupus a story like that, and see what kind of looks you get. I sometimes get angry with my kids when they expect me to move around as if I'm feeling fine when I've told them I feel bad. But then I find myself feeling guilty for getting irritable with them, because they cannot possibly understand what it's like in my skin. Please don't be fooled and think I never have bad days, emotionally, for certainly I still sometimes must put extra effort into keeping self-pity at bay. But fortunately, I recognize it for what it is, and refuse to give it control over me. There was a time when I was consummed with the need for comfort and understanding, and then forced into resentment and self-pity when others failed to accomodate this need. Today, I'm grateful I had no one to offer me such luxuries, for I was forced to find another way to deal with my disease. I learned to rely on God and laughter, rather than the solace of human aid. There are still times when I'm feeling particularly weak and exhausted that I wish I had someone to help me take care of my children so I could just go lay in bed, but so far, God has always managed to give me just enough strength to make it through the day, even when I felt it would be impossible. Today is one of those days.
As I sit here at 8:00 am wondering how in the world I will ever make it until bed-time tonight, thinking surely I couldn't move if the house were on fire, I know from past experience that God will get me through this day. That's the way it is when you have children... no matter how bad things may get in your life, and you feel you just can't be a parent one more day, somehow we can, and we do, with God's help.
If you would like to share your personal Lupus story and see it in print here at my home, in the Response Gallery you may enter The Lupus Survey here.
I would also like to strongly encourage all American's to do your part in promoting the A Companion to House Bill H.R.#1111: "The Lupus Research and Care Amendment of 1998"
And if you're still running through the medical maze looking for a diagnosis while being told there's nothing wrong with you, please don't question your sanity. Keep looking until you find a physician who will take you seriously. I would encourage you to read my personal lupus story which is posted here, as you will see what all I went through to fianlly recieve validation, a diagnosis, and proper treatment. Don't question yourself just because you haven't found a competant physician. You know your own body better than anyone!
Wanna see what a self-professed neurotic keeps in her bathroom cabints?
I will be adding, changing, and rearranging things here in the bathroom periodically, so please check back soon. I just feel TOO much like complaining today!
Until the bathroom's plumbing pipes are repaired, you'll have to take your business outside. But Do Not go in my flower bed!
Kindly step over the mess and please continue your tour of my home.
Has anyone seen the plumber? I heard a strange noise which sounded like it was coming from the toilet. I also noticed the kitchen faucet is dripping.
Ooooohhhhhhh!! WHAT DID I JUST STEP IN? Will somebody please get that dog out of the house?!
BED ROOM? Choose a room:
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