Attendees will be able to ask lupus-related questions and get answers from a panel of experts, which includes rheumatologists, dermatologists, and social workers.
Day 11 vlog- a cleanse day.
I am still pain free, as far as my (no longer) chronic shoulder pain.
I did have some of that passing joint stiffness that seems to go with detox.
I find on days with no food, I have to distract myself in order to take my mind off my hunger.
Today I assembled the stand and pedals, etc. and put our new electric piano together! I'm so excited to have a piano in the house, I think I played for 2-3 hours. Maybe that's why my hand are stiff...
At times over these last 22 years of dealing with lupus, I've had to choose between my health and my vanity. Even facing death, I've been like " but my hair.. i don't want to lose my hair! And I don't want to gain 50 pounds from the drugs!"
It sounds petty and ridiculous to someone who hasn't been there. But believe me when those are your 2 options- look like hell or die- some of us have to actually ponder the choices before agreeing to looking like poo. Let's see- Death or death warmed over? is that really the best you got?
So that's why all these 22 years I've been looking for those 3rd options in alternative medicine and lifestyle change. And I've had successes. I just tend to forget, after I get off the drugs and get well and get on with my life, to maintain some sort of sustainable regimen (it's regimen, not regime! A regime is a political power- but I digress).
Anyhow I hope this plan continues to keep me pain-free (as it has for 9 straight days!) and is something I can stick with long term. I also deeply hope that it lowers my unacceptably high inflammation and brings my kidneys back to normal.
Everybody has at least one good story in them. Some people have a whole bunch of great stories. Some have a bunch of great stories that can be woven into one long story about the power of tenacity and determination.
When faced with a chronic, and at times life-threatening, illness, each of us has to make choices about quality of life, career, family, children (or no children), weighing costs and rewards, making trade-offs for each choice. Everyone must follow their own path. Here is one woman's amazing story.
"Eleanor"
After a series of untreated strep infections I was dx with rheumatic
fever at age 10. While the other kids in my neighborhood were outside
playing, I was home alone reading. I grew up the only child of divorced
parents who never resided on the same side of the country or near their
relatives. My mother eventually remarried and I have a brother and a
sister who are 18 and 19 years younger than I am.
My son was born when I
was 20. Around the time I was diagnosed with lupus (between age 20 and 21), my
mother had a massive stroke. My daughter was born when I
was 26. By 27, I was a single parent with lupus and two kids. I'm skipping
over the years of marriage to a traumatized Vietnam-era Marine. So, no, I
have never had a great deal of family support and help. The only
relatives within a 1000 miles of where I live now are my children and my
grandchildren.
I did manage to get a scholarship to complete my undergraduate
studies. I got my BA just a few months after my daughter was born. Then I
got a fellowship for graduate school and completed my MA and my PhD. By
then I had figured out that I could cope if I did not try to get around a big city using public transportation five days a week. The world worked best
for me when I went out and dealt with the world one day and then spent
the next day sitting in one spot working. So, academia was definitely
the place for me. And I held down a full time faculty position at a
major research university for 30 years.
During those years I think I worked as hard on coping strategies
as I did at the job itself. One of my biggest job challenges was the
fact that my department was not housed in a classroom building. So on
the days that I taught I had to hike from one side of campus to the
other at least three times. I had three total knee replacement surgeries
but at least I was getting some regular exercise - you gotta laugh -
LOL. After the ADA was enacted, and as my third knee replacement surgery
approached, I was granted a reasonable accommodation which provided me
with an office in a classroom building and classes that were all
scheduled for that building.
One of my former graduate students is now a vice-provost at the
university where I worked. She still remembers that I did not show up at
the end of the semester party where she and one other student were
scheduled to do their seminar presentations. The other students said
that because I was not there they did not have to present. Those two
retorted that they had listened to everyone else and that everyone else
was going to listen to them. Of course I knew that they would do what
they were supposed to do even if I were not there. That is why I
scheduled them at the end of the semester.
Back when I was in graduate school, I
would take my final exam and/or turn in my final paper and go straight
to the hospital. As a professor, I was hospitalized at the end of the
spring semester every year for almost 20 years. I would turn in my final
grades and drive myself to the hospital.
I was forced into early retirement when I developed severe vitamin D
deficiency following kidney surgery and and a broken leg (I was trying
to plant flowers before I went to the hospital for the kidney surgery).
I have had some really difficult times and my resiliency has been
tested over and over again. Because I became "ill" at such an early age I
never had to go through a period of mourning for the loss of a life in
which I was a healthy and active person. Many people who become ill
later in life seem to get stuck in perpetual mourning for what once was
and now is no more. They can't seem to bury that other life and move on
with the new one. There really needs to be grief counseling for these
lost lives.
It was difficult to live without family support. But then I did not
have to spend a great deal of time trying to get family members to
understand me and what I was going through and I never had to deal with
those blue spells that come from feeling like a drain on the family.
Every now and then I show up at family reunions and have fun because I
don't owe them anything. I certainly do not owe them an explanation of
my life.
Q&A
What do you usually do when your Lupus symptoms flare?
I am no longer seeing a rheumatologist on a regular
basis. My primary care physician is an extremely competent internist who
is willing to try approaches that many conventional physicians will
not. I asked him if he would help me manage the lupus and he said yes. I
really like this man.
I have been blessed to see my lupus become so
inactive that I am not currently taking any lupus medications or any
narcotic pain medications
What has been most helpful in your recovery?
At
this point in history there is no such thing as recovery from lupus. I
am only in remission. This means that the activity level of the disease
is low and the symptoms few. But it would only take exposure to one
trigger for the disease to become active again. Over decades I learned
to identify the major factors which trigger lupus flares in my body. I
have learned to avoid some of these triggers, such as exposure to
sunlight and other sources of UV. I have learned to handle others, such
as stress, more effectively. After that I do what everyone who wants to
be healthy must do. I eat a nutrient-dense whole-food diet designed to
meet my individual biochemical needs. I supplement the nutrients that I
cannot get from food, such as vitamin D. I also engage in various forms
of exercise, mostly in a warm therapeutic pool. Every trip to the pool
is like an island get away.
I have also benefited from movement, massage, meditation, and
breathing even when they are practiced using techniques from my own
traditional cultures rather than that of the Chinese. I have been very
integrative in my practice. And 3MB is simply one part of an approach
that I believe has enhanced my well-being.
What are you passionate about?
Since I retired from the
university three years ago, I have completed a new degree: Master of
Science in Health and Nutrition Education. I am a holistic health and
nutrition educator who is passionate about health equity. I am beyond
passionate about the eradicating the vitamin D deficiency epidemic.
Recent research indicates that people with lupus tend to be vitamin D
deficient. It also shows that their vitamin D levels are related to the
frequency and severity of lupus symptoms. So I am obsessive about telling
people with lupus to correct this deficiency.
Thank you for allowing us to share your story. You truly are a fighter, and an inspiration. Thank you also for using what you've learned to help others live better lives.
Stay tuned- I hope to find more incredible patient stories like this one!
Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
Lupus is diagnosed using a combination of symptoms and lab tests. Your medical history and that of your family's may also be taken into account. There is no one specific "lupus test." Here are some classic symptoms:
extreme fatigue (tiredness)
headaches
painful or swollen joints
fever
anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
swelling (edema) in feet, legs, hands, and/or around eyes
pain in chest on deep breathing (pleurisy)
butterfly-shaped rash across cheeks and nose
sun- or light-sensitivity (photosensitivity)
hair loss
abnormal blood clotting
unexplained weight loss
fingers turning white and/or blue when cold (Raynaud’s phenomenon)
mouth or nose ulcers
It used to be if you had 4 of the classic symptoms, they would diagnose you with lupus. But these days they seem to be a bit more hesitant to diagnose people with lupus. Don't know why.
Lab tests run when looking for lupus:
complete blood count (CBC)
urine test (for kidney involvement)
for autoimmune activity:
Antinuclear antibodies (ANA)
Antibodies to double-stranded DNA (anti-dsDNA)
Antibodies to phospholipids (aPLs)
Antibodies to Ro/SS-A and La/SS-B
Antibodies to Sm
Antibodies to RNP
for inflammation:
Complement
C-reactive protein (CRP)
Erythrocyte sedimentation rate (ESR or "sed" rate)
Unfortunately, lupus can look very different from one person to another, and also from month to month in the same person. The immune system is attacking the body's healthy tissues, and that could be any tissue. Heart, lungs, kidneys, brain, skin, you name it.
And for this reason it's not uncommon for someone with lupus to go to doctors for 2-5 years before finally getting diagnosed. I was first diagnosed with lung disease (um, no), then bronchitis (what? I wasn't even coughing- there was no phlegm! I've had bronchitis, I know bronchitis, and you sir are no bronchitis!)- the only helpful part about that was they threw antibiotics at me that made me far worse, and therefore easier to diagnose.
The next guess was Rhuematoid arthritis (getting warmer...), and finally, after a night in the ER and a desperate plea to God to just get me a diagnosis, I got a doctor the next day who took enough time with me to get the whole picture, and she diagnosed me. By that time I was so sick, it was easy to diagnose me (once someone listened to me for more than 5 seconds) because
I had every single symptom and the horrible lab results. At that point
it was so obvious even a caveman could do it...
For this reason, and because our brains and memories are not at their best when we're under attack, I believe it's very important that we keep our own symptom journal when we are actively ill, in order to help the doctors put it all together. It could greatly shorten the amount of time you spend in the waiting room, with no answers and nobody but Judge Judy to keep you company.
There's so much to say about Prednisone I couldn't fit it all in one post.
So here's another.
Did you ever notice that when you get a 6-Day pack of prednisone (or cortisone, same idea), you start with 6 pills a day then 5, then 4, then 3, then 2, then 1? There's a reason for that. Corticosteroids like prednisone and cortisone replace the hormones that run your vital organs. And there's a lag time between your stopping the drug and your body restarting making that hormone on its own. So you MUST taper off prednisone. If you stop taking it suddenly, you can end up feeling really awful.
Prednisone works by suppressing your immune system. So if
you have a horrible poison ivy rash (or a rash from an allergic reaction
to oh let's say a drug http://lupusandhumor.blogspot.com/2013/02/prednisone-vs-killer-drug-reaction.html
), that's your immune system creating that rash. And by suppressing
your immune system, it gets rid of the very uncomfortable symptoms.
When you are using prednisone to control an autoimmune disease, you are on prednisone for much longer than 6 days.
I never wanted to go on prednisone for lupus in the first place because while I was waiting for my first rheumatologist appointment (and prescription) I read about all the horrible long-term and short-term side effects. But I was literally dying and prednisone saved me. And once I was back on my feet and going to support groups, and meeting people who were obese because of long-term prednisone, or getting joints replaced because of prednisone, I wanted to get off the prednisone. Plus I couldn't sleep and I was gaining weight like mad. I gained 10 pounds in just the first week.
The doctors want to wean you off prednisone if possible, because of all the dangerous long-term side effects, but it has to be balanced with controlling the lupus (or other autoimmune disease). Prednisone is not a cure; it's just basically calming down the immune system. If you come off of it too quickly, or, God forbid, just stop taking it all together, your disease can come back full force. (This is even true of blood pressure meds. if you stop taking them suddenly you can end up with "rebound" high blood pressure). The answer is almost always to wean off the meds gradually.
When my doctor first instructed me to lower my prednisone doseage, we went from 40 mg to 30mg in one swoop. Wow i felt like crap. I was exhausted and achy and felt like I had the flu for 3-4 days. I realized it was not the flu, or lupus, but prednisone withdrawal. So from then on, if she said to go from 30 to 25 I'd go from 30 to like 29 for a couple days, then 28 for a couple days, etc. (I just cut off gradually bigger slivers off my pills each day until it got to the "cutline" down the middle). I didn't want to spend 3 days in bed from prednisone withdrawal every time we cut the dose.
Prednisone can be cut with a pill cutter (get one at a drug store for a couple bucks). Some pills
(like my blood pressure med that I'm finally off of) cannot be cut, because they are coated and are slow-release meds, so you
have to get a new prescription for a lower dose.
One more story, this one about my aunt. My Aunt Pat had brain cancer. They gave her gamma "knife" radiation. She had had a stroke and lost the use of her left hand, just like I did. So they put her on prednisone to hold down the swelling in her brain. Aunt Pat is the person who inspired me to play guitar when I was little. So she was just as devastated as I was to lose the use of her left hand. She was slowly regaining it and making good progress.
Then she was getting annoyed at the insomnia and decided to cut the prednisone in half. From 40 to 20. In one day, poof! Just decided that on her own. That night she had a long seizure and ended up in the hospital, having lost all the progress she had made. Doctors cleared her of the cancer but she died anyway a month or so later. I believe she died of hopelessness. There were other factors in her life that were troubling her, besides the huge setback from the seizure, but I've always felt guilty for not insisting she go take that other prednisone pill when she told me she had decided to cut the dose herself. She might still be around, and playing guitar.
So I'm telling you now. Wean off your meds slowly and carefully, and keep monitoring your symptoms and get regular blood tests while you do so. Please don't ever stop suddenly. I realize people are going to do what they're going to do, but at least now you know the consequences going in.
There are other drugs for lupus besides prednisone. Prednisone is just the cheapest, fastest, oldest and most commonly used treatment for lupus. I will discuss those other drugs in another post. And treatments that involve no drugs.
I don't know where the creator got the confirmation that Michael Jackson had lupus, although I do remember some hubbub and speculation about that after his death, including from Deepak Choprah. Michael Jackson never admitted to it. Seal has discoid lupus, the kind of lupus that affects only the skin, not internal organs.
Nick Cannon, when interviewed on TV (I was watching it live), did not really commit to the word lupus. He said he had
something "lupus-like." (I can relate. I didn't want to use the "L" word in reference to myself, either. Kinda still don't want to). He has since been more open about his diagnosis and he and I handle our health in a very similar fashion: http://www.ebony.com/wellness-empowerment/living-with-lupus#axzz2UpksIB6a
Lady Gaga said she tested positive for "borderline lupus." None of us who know about lupus have ever heard of that term. But at least she's a big name and owning it. Sort of.
Clearly, not all these celebrities with lupus want people to know about it. Some say Anna Nicole Smith had it, but she never
admitted it. And I'm pretty sure Millie the dog didn't write that book herself. I suspect she had a ghost writer and maybe didn't
even give permission for that tell-all book to be published.
Back in 2007, I wrote a post about how we needed a celebrity to
"admit" (as if it were shameful) to having lupus. I feel like we need a
spokesperson to get the illness into the spotlight so that it is taken
more seriously and diagnosed more quickly.
In 2007, there
weren't really any celebrities actually publicly saying
they had lupus. There has been some progress since this original post,
where I discuss why people are so hesitant to admit to the
diagnosis: http://lupusandhumor.blogspot.com/2007/11/we-need-celebrity-to-admit-to-having.html . Then, I gave a longer list of people, but with fewer actual celebrities- more like celebrities whose relatives had lupus:
Flannery O'Connor, writer, died of lupus in 1964.
Rapper/ Music Producer J Dilla/Jay Dee died of lupus in Feb 2006
Sharon Stone's sister
James Garner's (the Rockford Files) daughter (not Jennifer Garner).
Anna Nicole Smith? (not confirmed)
Michael Jackson (probably)
Mary McDonough, "Erin" from "The Waltons."
Millie the dog
Seal: discoid (skin) lupus
Richard Dreyfuss' first wife
Mercedes Yvette, runner up on season 2 of America's Top Model
Backstreet Boy Howie D's sister, Caroline, died from lupus
Wayne Newton's sister-in-law
American Idol contestant (2007) Leslie Hunt, who made it to the top 20
finalists.
Dani
Miura, Actress, To Catch a Predator
I get why people don't want to talk about their illness openly. You get drama, baggage, dumb questions and stupid comments. And if you're trying to have a career as an entertainer, people would rather hire someone who is healthy and reliable (and insurable).
But since that time, there has been one celebrity who
has been very honest about her diagnosis.Toni Braxton has openly talked about her struggles with lupus. She belongs at the top of the "celebrities with lupus" section, because she has been very open about her illness, and that is risky for someone who is still actively pursuing a
career in entertainment. Cheers and thank you to Toni for her courage during May, Lupus Awareness Month.
When I was diagnosed with lupus by a mainstream doctor, and then sent to a specialist (rheumatologist), I was given two choices: take prednisone or get cussed out. I didn't know about the cussing out option until I went for my second appointment and hadn't taken the prednisone. The thing is, I had read about all the side effects of prednisone and to me it sounded worse than lupus.
But here's what I eventually learned (the hard way): if you have systemic lupus erythematosus (a.k.a. SLE, lupus, lupus SLE, systemic lupus, or lupus erythematosus, or even the misspelling "lupis")....where was I? Oh yes, if you have lupus, it's not going to just go away by itself if you just wait it out, like a bad cold or bronchitis. I tried that. I got very very sick, down to 80 pounds. Lost most of my hair, kidneys failing, too weak to get out of a chair, constant pain. I would have died if I hadn't finally decided to get on some medication.
The first thing I did after being diagnosed was go to the library (this was 1993, pre-internet) and look up "lupus" in the encyclopedia. It said that people who were diagnosed with lupus usually died within 5 years of being diagnosed. This was very old information, because it was obviously written before they found out they could control lupus with drugs. I did not know it was old information at the time.
The next year I met a woman who was one of the first people to be given prednisone for lupus. They didn't know what dose to give her, so they started with 250mg. That is not a typo. Seriously. Can you imagine? I go bonkers on 40 mg. She found herself at a dinner party one night and before she realized what she was doing, she pulled the salad serving bowl in front of her and started eating out of it with her hands.
I did eventually go on prednisone. The pattern has been this: I take prednisone for about 9-10 months. And then I've been able to wean off it. Then 4-8 years later, the lupus goes bonkers again and I go back on the prednisone. Repeat.
Now when websites and doctors talk about lupus, they say it goes in cycles of "flares," rather than saying you'll be dead in 5 years. I attribute this change to the use of medications to quiet the disease. And I attribute the cycle of flares to the coming off the drugs and going back on them. Which is why some doctors try to keep patients on a "maintenance" dose of prednisone (or some other drug), in order to prevent future flares.
I rely on prednisone and it works for me but I hate the side effects and it's dangerous to be on it long-term. So I have searched high and low, near and far for other more natural options to build up my health and quiet the disease.
I've done acupuncture, chi gung, bodytalk (energy medicine), chelation therapy, chiropractic, lymphatic massage, regular massage, physical therapy, movement therapy, talk therapy, life coaches, psychiatry, got all my metal dental fillings removed and replaced, became self-employed and pursued my dreams (yes happiness affects your health), cut toxic people from my life, and changed my diet.
Out of everything I tried, the diet change (cutting out gluten, dairy, nutrasweet and MSG) and chi gung actually made all my lab tests straighten out, and I got the first negative ANA test I've ever had since 1993. And they basically cost nothing.
My last lupus flare was in 2006. I went on 5-6 drugs (including prednisone). I was able to wean off most of them within a year, except for the blood pressure drug, which I finally weaned off of just this past month. I feel like I'm in pretty good control of my heath now, because for me the diet makes such a huge difference. I have several big motivators to stay on that diet: not wanting to suffer from lupus, not wanting to suffer from prednisone, and not wanting to limited in what I can do physically.
I don't really care if a doctor cusses me out. That's not a motivator for me. In fact, it makes me that much less likely to "comply."
But now, because I have experienced the consequences of taking and not taking any medication while lupus is chewing up my organs, I am rather open to the idea of pharmaceutical intervention. If I ever have another lupus flare, yes, I will take prednisone (and ask people not to take my picture while I have a moon face). It's cheap, it works for me, and it has saved my life 3 times.
Prednisone was the first effective treatment for systemic lupus. Before that there was no hope. Just start planning your funeral. So, although it makes me batty, and it tastes like Ajax (I've accidentlaly bitten a pill more than once), I'm grateful for this drug. There are other medications out there for lupus now, as well as effective non-drug treatments, and I will talk about them in another post.
Meanwhile, here's a song I wrote about my love/hate relationship with prednisone.
(If you have a topic or question you'd like me to write about this month regarding lupus that isn't on this list, please put it in the comment section and I'll do my best to write something helpful and informative).
I could make today's post very short:
Is lupus contagious? No.
By answering "Is lupus contagious?" in depth, I'd be getting into the "what causes lupus?" topic.
According to the book The Autoimmune Epidemic (not a light read but a well-researched one), lupus, and autoimmune disease in general, has increased 300% in the last few decades. But only in industrialized nations. Not in the "poorer" countries that don't have our lifestyles. Yes, autoimmune disease is becoming a bigger and bigger problem. But it is not contagious.
Doctors are coming to believe it's a combination of genetic tendency and enviromental factors that create autoimmune diseases.
"Is it contagious?" is my least favorite question to be asked, because I feel like a leper when people ask me that. Here are the top 10 things I found most annoying to be asked, especially when I was first diagnosed:
From the book
See you on the next post. And please post in the comments section any questions (or annoying things people say) that I forgot to mention. Or anything else you'd like to add.
Found this great infographic to share with you. May is lupus awareness month, and I have been planning to write a series of posts addressing the most commonly asked questions about lupus "What is lupus?" "What are the symptoms of lupus?" "Is lupus genetic?" "Is lupus contagious?" etc... Well, this infographic answers quite a few of the most common questions. But not all of them, so I still have something to write about. Meanwhile, here's a quick guide to lupus for those whose only knowledge of lupus is that "it's never lupus."
They need to work Toni Braxton into the "celebrities" section, because she has been very open about her lupus, and that is risky for someone who is still actively pursuing a career in entertainment.
What else would you want to be included on this infographic?
Dear Carla,
My mother passed away from Lupus and connective tissue disease. I was wondering if Lupus was hereditary. Thanks
Hello!
Thanks for writing in.
I'm so sorry you lost your Mom to lupus.
Not everyone realizes how serious lupus can be.
A lot of research has been and is still being done to attempt to identify a lupus gene.
According to blogger Iris (below in comments section), "The John Curtin Medical Research Institute at ANU has found the gene
behind lupus. They named it "roquin" after the patron saint of plague
victims. Normal roquin leads to a healthy immune system, mutated roquin is the cause of autoimmune diseases, including lupus. http://www.sometimesitislupus.com/2013/05/towards-cure.html "
(Thank you Iris for the info!).
However, genes alone do not create lupus. According to the National Institute for Health, "In studies of identical twins—who are born with the exact same
genes—when one twin has lupus, the other twin has a 24-percent chance of
developing it. This and other research suggests that genetics plays an
important role, but it also shows that genes alone do not determine who
gets lupus..."
And according to the Lupus Foundation of America, only 10% of people with lupus will have a close relative who has lupus or may develop lupus. That's not a strong case for lupus being genetic.
The next question is: why are these genes mutated? Does it happen at conception or are they damaged during our lifetime? Looks like from the identical twin study we are not born a ticking lupus time bomb- something else has to come into the equation.
Some forward-thinking doctors (such as Mercola, Oz, Hyman) believe that genetics "load the gun" but it's lifestyle that "pulls the trigger." In other words, there may be more potential in a certain family to develop a particular disease, but that disease will only occur if enough challenges are presented to the body (for example, stress, poor diet, pollution, radiation, trauma, accidents, poor sleep, lack of community or good relationships, lack of joy, lack of meaning and purpose in life).
Only 1% of diseases are purely genetic. Meaning if your parents had the disease, you will definitely get it. Only 1%. That's good news, because that means most of the diseases you hear about, including lupus, can be turned around somewhat, or even completely, by lifestyle changes.
I was diagnosed with lupus in 1993. I had severe lupus, with kidney failure, congestive heart failure, anemia, stroke, and all the weakness exhaustion and hair loss that go along with it all. I was helped back to strength by medication but then, unlike many lupus patients, I was able to get off the medication and totally reclaim my health. I did so by making drastic changes in both my line of work and my diet (I am gluten free and dairy free and no artificial sweeteners or MSG, and I eat a lot of vegetables).
In short, if your mother had lupus, even severe fatal lupus, it is not inevitable that you will too. But you will need to make conscious healthy choices to avoid illness. Genetic tendencies run in families, but so do lifestyles and so do food allergies. I'd suggest you check out a few books on lupus, some of which may be available at your local library.
The Lupus Recovery Diet, Jill Harrington
Super Immunity Solution, Joel Fuhrman (not lupus book, but a wellness/ nutrition book)
How Can You NOT Laugh at a Time Like This (my book)
Integrative Nutrition, Joshua Rosenthal (you can download this book for free at www.singingpatientwellness.com It's not a lupus book; it's just about nutrition)
Any of these will give you some ideas on how you can use your kitchen and other choices to keep and even improve your current health.
I wish you all the best!
Carla
Carla Ulbrich
The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.
What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"
Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.
Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.
Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.
I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )
I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.
20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.
It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"
Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?
The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").
Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.
Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.
lupus symptoms which overlap with Sjogren's symptoms:
Raynaud’s phenomenon
joint pain/ inflammation
lung inflammation of the lining around the lungs (pleuritis)
Kidney disorder – persistent protein or cellular casts in the urine
Neurological (nerve) disorder – seizures or psychosis
lupus symptoms which do NOT overlap with Sjogrens:
Fever (over 100° F)
Extreme fatigue
Hair loss
Inflammation of heart lining
Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
Discoid rash – a rash that appears as red, raised, disk-shaped patches
Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
Oral ulcers – sores appearing in the mouth
Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
Abnormal antinuclear antibody (ANA)
If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.
A few things to consider asking for:
kidney function tests. Sjogren's or lupus can affect kidneys.
a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
consider bringing a trusted friend to your appointment with you. Doctors are used to that.
End of rant, and a few reasonable parting words:
Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and
And if you are a praying person, that doesn't hurt either.
My best wishes to those who are struggling for a proper diagnosis-
And one last thing... %$#*&*#*!!
Carla
Carla Ulbrich, The Singing Patient
_____________ www.thesingingpatient.com www.bestpossibleme.com - health coaching www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin
