Staying Positive During Quarantine

Like a lot of people with chronic illness, this quarantine is not my first rodeo.
I've been "grounded" before by severe bouts with chronic illness (systemic lupus, along with lupus nephritis, Sjogren's and Raynaud's).
Twice, it was severe enough to leave me completely bed-ridden for months.
I know a little about How to Quarantine.

Being cooped up doesn't have to be an endless sea of nothingness and depression.
We still have creativity and humor to keep our spirits up. And both of these traits nurture resilience. I believe that is in part because being creative gives us something to focus on besides everything that's not going well. And it can provide an outlet for emotion and self-expression, and even a sense of control.

In 2002, I was in the hospital with my kidneys failing, congestive heart failure, pleurisy, neuropathy- the lupus was raging out of control. They put me on 9 drugs and chemo to get it under control and I was getting really depressed from the chronic pain as well as being in the hospital and feeling defeated by lupus (again).

Then Saralyn, my silliest friend, came to visit me. She treated me just like things were normal, instead of awkwardly standing there not knowing what to say. She jumped from goofy topic to goofy topic until she got me to laugh. About maxi pads. And how annoying they are. It changed everything.

I stayed up late jotting ideas on scraps of paper, writing a really dumb song about how I hate maxi pads and how I can never find a normal box of pads- just weird ones. I was completely distracted from my pain and from the fact that I was in the hospital with 99 problems. The act of creation was an act of me reclaiming my sense of humor and a sense of control.

Now, that maxi pad song is not one that I share with the world, but it opened the floodgates. I spent hours every day for the next year, even as I was regaining my strength, writing about all the things that frustrated me (had plenty to pick from!) and I ended up writing an entire CD of humorous songs about surviving chronic illness. That CD went on to be played by a lot of radio stations and reaching a lot of other chronically ill patients. I got to pay it forward with the laughter. I took the gift Saralyn gave me and passed it on to my fellow patients.

And here we all are together, faced with a global challenge this time.
And I've been writing again. About wearing sweatpants, about trying to use Zoom, about cutting my husband's hair.

You don't need to be a professional to pick up a pen or create.
I encourage everyone to write, even if it's just for yourself. Or make something. Or find some "dad jokes" and get up and tell them to your family. Express yourself! Sometimes the best way to cheer yourself is to cheer someone else.

Selena Gomez "comes out" as a lupus patient

Lupus is still a fairly misunderstood illness. I still get strange questions about it, years after I was first diagnosed. Of course, I have to remember that when i was diagnosed, i'd never even heard the word "lupus" myself.

When a celebrity opens up about having an illness, it can potentially help bring more awareness and even more compassion to the illness, and more importantly, better understanding.

"Coming out" as a celebrity with a chronic illness is risky. There's the fear that people won't want to hire you for shows/ movies anymore because you might cancel the show/ perform poorly because you're sick. Decades ago, when celebrities developed cancer, they were completely hush-hush about it. They would find a doctor who would treat them in a remote place, under complete secrecy, and neither the doctor nor the celebrity would ever speak of it. Show biz is, indeed, a competitive business. No one wanted to jeopardize their career by admitting to not being in perfect health and able to work at the drop of a hat.

Speaking of hats, hats off to Selenaa Gomez, for talking openly about her recent diagnosis of lupus.
http://tinyurl.com/pwwrfv7

The Definition of Health, and my quest to settle for nothing less

I think of health as a spectrum.On one end, you're dead. On the other, you're flourishing.

Anyone who's everhad a houseplant or a garden knows the difference between a dead plant and a live one, and also the difference between a plant that is doing OK and one that is flourishing.

The World Health Organization defines "health" as:
"a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Let that soak in.
Not merely the absence of disease.
Complete well-being.

When we are diagnosed with a chronic illness, we are told to "accept" our illness and to settle for something far less than the WHO's definition of health. We are told by our doctors that such a dream is now unattainable for us. I have refused to believe this from Day 1. I do not and will not accept it.

I have tried all kinds of alternative medicine over my 21 years since being diagnosed. A lot of it has helped me tremendously, and I've been able to taper off all the lupus and blood pressure drugs, each of the 3 times I've had a flare. And my flares are not minor. They involve kidney failure, congestive heart failure, pleurisy, anemia, and even a stroke. Not mention hair loss, weight loss, fever, exhaustion, neuropathy and chronic pain. (OK I just mentioned those).

Our mainstream doctors are trained to treat us with only 2 tools: prescriptions and surgery. Yes, prescriptions such as prednisone are the reason I am still alive and able to sit here and type about anything at all. 50 years ago, lupus was a death sentence. So I definitely appreciate the existence of life-saving drugs, and I take them when I'm in trouble. I am NOT anti-drug.

However, long-term prescription use is *always* going to have consequences. And sometimes those consequences are very serious. And anyway, drugs can't get you to "flourishing." They can get you to the "not dead" zone, or even the "OK" zone, which is the best we're told top hope for. But being diagnosed in my early 20s, I wanted more than just getting by with "OK" for the next 40-60 years.
(Especially since "OK" seemed to mean, from the folks I saw at support groups back then, being 50-100 pounds overweight from the steroids, and thin to no hair. And in some cases, frequent surgeries to replace bones eaten by the steroids. How was this OK?).

Thus, my search for better answers all this time. I wish I could type up every single thing I've tried in one concise blog post, but we're talking 21 years of experiments on myself. And what works for one person doesn't always work for another.

However, there are 2 basic, sustainable habits I would recommend every lupus patient try:

- Qi Gong (also spelled chi gung). This is a deep-breathing, slow-moving Chinese art much like Tai Chi. Make sure you find a practitioner/ DVD that teaches healing chi gung, not warrior chi gung.

- diet modification (eliminating gluten, dairy, eggs, diet soda, sugar). This can be done on your own, or with a health coach, or setting up a pair or more of you to do it together. Or you can do what I did, and get a system that makes it very easy. Here is the system I've been using for the last 63 days. It's both really nutritious *and* it detoxes your system. It has completely eliminated my need for narcotics and I have slimmed down by 6 pounds with no exercise. I'm really pleased with this.

http://www.isagenix.com/en-US/Isamovie#cat=weightLoss&vid=9jeIL82Of9I

Cheers and good health!

Carla
The Singing Patient
carla@thesingingpatient.com

http://www.thesingingpatient.com

Lupus and General Health chat Tues. 12/2 5:30pmEastern

Tuesday, December 2nd

5:30 pm to 6:30 pm Eastern time 

Hospital for Special Surgery and S.L.E. Lupus Foundation present:

Lupus & General Health Chat

Hosted on the HSS Facebook page:

http://www.facebook.com/hspecialsurgery  

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 31: the visitor has returned

I was on a conference call the other day (group call where we discuss how we're doing on the nutrition plan) and they got to me and I, forgetting/ not caring there were strangers and dudes on the call,, said, well, I got my period!

Thing is, for me, with lupus, having my period in a normal fashion is a good thing. If it disappears, I'm in trouble, and if it comes back and stays for 6 solid weeks, obviously I'm also in trouble. Been in both those scenarios more than once. So, when it's close to normal, even though I don't *enjoy* it, I'm kind of relieved, perhaps even a tad grateful.

Well, maybe you weren't on the call, but there's no reason you all can't experience a tad of "What is wrong with you, Carla?'" to! Here's today's vlog and song:

http://youtu.be/sxg2HMcmh1g

Cheers!
Carla
http://www.thesingingpatient.com

Day 11: detox

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...

Carla
http://www.thesingingpatient.com

Day 10: Tapering Off Drugs Carefully

Day 10! Still on the plan. Still pain-free!
And now, every so carefully, weaning off one of my prescriptions.



Carla

http://www.thesingingpatient.com

Day 9

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.

And here's today's ridiculous song.

Carla
http://www.thesingingpatient.com

Tenacity: Portrait of a Very Determined Lupus Patient

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

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich

Come Back When You're Sicker

A few months ago, I was sitting outside in the sun. Upon coming inside my
hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms.

My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurologist in a week.

I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.


Hi there-
Thanks for writing in.

I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating. Sometimes I think they make us wait so our symptoms can get worse, which makes us easier to diagnose. Doctors have said to patients with "mild" symptoms "Come back when you're sicker." If it's bad enough, it'll be so obvious even a caveman can diagnose it.

It sounds like you at least have Raynaud's (the discolored and painful fingernails when exposed to cold),  possibly lupus SLE (the other tests and symptoms do sound autoimmune). Plus you have a history of autoimmune activity. Perhaps the anticardiolipin antibody syndrome was real- not a misdiagnosis- and it went into remission with the pregnancy. 

I'm only guessing. I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

My real "expertise" is that I have had lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens, for 20 years. So those are the illnesses I am most familiar with. They are all autoimmune, and it's very common for someone with an autoimmune disease to find out they have another autoimmune disease. Or 2. Or 3. They are generally all treated the same way, with immune suppressants, which will get the symptoms under control.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

Over the years I've found some natural medicine that has helped me to be drug-free and in remission. But I have used and will use medications if things get out of control.

If things get bad enough for you (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain. Maybe you can at least get some kind of medication that will stop the pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

How Is Lupus Diagnosed?

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) 

other:

• blood clotting time tests
• tissue biopsies (usually skin or kidney)

For more detailed info on these tests, go to http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

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.

Well wishes-
Carla

Prednisone 2: Importance of weaning off meds carefully

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.

Cheers-
Carla

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient

Famous People with Lupus

I recently posted an infographic on lupus that listed 6 celebrities with lupus.
http://lupusandhumor.blogspot.com/2013/05/what-is-lupus-what-are-lupus-symptoms.html 
I didn't actually create this infographic (because I haven't figured out how to do that), so there are a few things I would change on it if I could.

The list of celebrities on the infographic is:

• Michael Jackson
• Seal
• Nick Cannon
• Lady Gaga
• Tim Raines (baseball player)
• Millie the Dog (Bush I's dog)

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.

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.youtube.com/user/carlaulbrich - funny songs
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"  
 

Treatments for Lupus: Prednisone

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.



From the CD



Carla
Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich - more videos

Is Lupus Contagious?

May is Lupus Awareness Month.
I'm writing a series of posts this month in an effort to answer some of the most commonly asked questions about lupus:

"Is lupus genetic?" (already posted: http://lupusandhumor.blogspot.com/2013/05/is-lupus-genetic.html )
"What is Lupus?" (http://lupusandhumor.blogspot.com/2013/05/what-is-lupus-what-are-lupus-symptoms.html )
"How is Lupus Diagnosed?"
"What are the signs of lupus?"
"Is there a lupus blood test?"
"What causes lupus?"
"Is there a lupus diet?"
"Is there a lupus cure now, or on the horizon?"
"What are the available lupus treatments?"
"Why did this happen to me?"
"Who gets lupus?"
"Are there any celebrities with lupus?"

and today's topic:
"Is Lupus Contagious?"

(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.

If you don't believe me, then ask Dr. Yazdany:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnclinical.aspx?articleid=4520

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.

Well wishes!
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich

What is Lupus?

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."

Lupus Infographic infographic by manro. 

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? 

Carla Ulbrich
PS Just learned that there is a new updated infographic from these same folkswith lots of new info on it:
http://www.achieveclinical.com/news/lupus-awareness-month-purple/

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
http://www.youtube.com/user/carlaulbrich - funny medical songs

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
 

Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my best-
Carla


Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Is Lupus Genetic?

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

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Resources for people with lupus

Nobody can truly understand what you're going through the way another person with lupus does. Support groups, the good ones anyway, can be a great place to share without judgment, and to hear what's working for others. You don't have to figure this out all on your own.

This is courtesy of the Lupus Foundation of America, www.lupus.org.

to your health-
Carla
Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient
www.linkedin.com/in/carlaulbrich

"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

http://tinyurl.com/348hroc- Carla's book

Lupus- not just a punchline on House, MD

Lupus- it's not just a punchline on House, MD.

This infographic brought to you by the Lupus Foundation of America. Visit them at lupus.org.
Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient

"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

get Carla's book! http://tinyurl.com/348hroc