Eating Gluten Free ... and politics?

The other day, I posted this status on facebook:

"Ok, everyone was right. Chicken lettuce wraps are amazing! And available gluten free! I'm stuffed!!! — at P.F. Chang's China Bistro."

Somehow, it turned into a "Obama=Osama, unaffordable care act, global warming is a hoax" debate. Not only am I not making this up, I'm not even exaggerating. I have, however, summarized people's posts, in order to cut this post from 10 pages down to 1 or 2.

Of course, like all threads, this one could (and might) go on forever, but as far as I know, we managed to get back on topic without anyone having to "unfriend" anyone. And maybe some of us learned a few things. For example, I did not know some mayonnaise has gluten. Or that there were so many potential spellings for gluten.

Summary of conversation thus far:

• • - (me) PF Chang's makes delicious chicken lettuce wraps!

    - I can get you the recipe!

    - (me) great! thanks! 

    
    

    I then went offline for the evening and came back to this the next day (I didn't chime in until the end):

    
    

    - Chang's screws up GF orders

    - no they don't

    - not all mayonnaise is gluten-free

    - what is gluton?(sic) I think glutten (sic) allergy is a hoax, just like Santa and global warming

    - not it's not

    - untreated celiac disease is an underlying issue for many other diseases

    - I don't believe you, because my neighbor wouldn't drink my homemade beer, claiming he was allergic to yeast. I think it was just an excuse to be antisocial.

    - maybe they really are allergic to yeast. Lots of people are.

    - i was trying to be funny

    - really?

    - prove global warming is a hoax and the free market is actually free

    - liberals, Obama, Osama, unaffordable care act, Al Gore is a fat liar. I hope this has helped.

    - WTF does this have to do with PF Chang's gluten free lettuce wraps?
    -(me) How did my comment about a delicious meal turn into a political debate about global warming?
    
    - (me) I eat gluten = joint pain and swelling. Dairy = tendons seize up. Avoid those foods, avoid those problems. I wish it were a hoax, then I could eat whatever I want. Choosing to not believe something doesn't make it untrue.
    
    - I'm glad you got a meal you enjoyed. Eating out is tough when you're gluten-free.
    
    - There is a good point made by Carla here, Know your own body and what works for it. My point was don't just believe something because people talk about it. And the Chicken Lettice (sic) wrap does sound good! I'd still like it wrapped in bacon and a Hoagie.  (note: this is the guy who said he doesn't believe in Santa, global warming, or yeast allergies. Perhaps I should send him some bacon).
     

    
    

    Clearly there is no issue you can post about that someone can't turn political. Not even "Hey, wasn't dinner great?" But if you're lucky, one of your friends will point out that we're way off-topic.

    
    

    Meanwhile, I refuse to back down from my assertion that my meal was, in fact, delicious.

    
    

    
    Carla Ulbrich
    www.thesingingpatient.com
    
    

Are Ya Havin Any Fun?

What's one of the best things you can do for your immune system?
Once a week, have FUN with friends!
Yeah, fun is GOOD for you. I hope knowing that doesn't take the fun out of fun for you...

Having fun optimizes your immune system for 3 days afterwards. And if you have fun scheduled ahead of time, it also optimizes your immune system for the 3 days before the event!
Optimize? What does that mean?

Those of us with autoimmune diseases run away from anything that might BOOST our immune system. That is the last thing we want, is for our immune system to be MORE active. Autoimmune conditions, by definition, are defined by the patient's immune system attacking their own healthy tissues. And all medical treatment (drugs) is aimed at suppressing the immune system, in order to save our tissues and vital organs from attack. The last thing we want to do is rev it up.

But what we have learned about fun (and laughter as well) is that is *optimizes* the immune system. If it's to revved up, it brings it back towards normal. It it's too depressed (such as with a cold, flu, or AIDS), it brings it up closer to normal.

Now I know we think- ugh. fun. I'm too tired to go to Disneyland. Uh, yeah, me too. Even when I'm feeling fine, that idea wears me out. That degree of effort is not necessary in order to have fun.

I'm happy just sitting with my uke making up ridiculous songs and singing them to my husband, or a fellow funny person on skype. Or sitting around the dinner table with a bunch of old friends talking about anything at all, totally unplanned. Or putting a fake poop in someone's shower and waiting for them to see it. Or sitting with a fellow songwriter or comedian writing songs or jokes. Or doing madlibs with my nieces. Or karaoke. Thrift shopping or yard sale-ing with a friend (one who also likes thrifting). Or going dancing. Or putting on great music in my living room and dancing like an idiot.

How 'bout you?
What's your idea of fun?
Share it in the comment section!

Carla

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

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient

Wanted: Your Tips for those with a chronic illness

Hey friends!

I thought I'd try a collaborative effort.

On the various forums I've participated in ( such as www.bensfriends.org, www.lupusconnect.com),  I've noticed that there is a collective wisdom that comes from an interactive conversation.
Each response triggers more thoughts and ideas and questions.

I was working on a "Top 10 Tips For Those with Chronic Illness" list, when I realized, "I bet this list would be greatly improved by tapping into that collective wisdom."

When I've got the finalized "top 10" list, I'll be giving it away for free on my website. I'll take the Top 10 tips you voted for (or added and then voted for), add a little art (on second thought, I'll have someone with actual artistic abilities do that part), and make it into a nice 8 1/2 x 11 PDF that you can print and post (or share, or whatever you like).

Survey is now closed, and I'm working on tallying the results to share the top 10 with you!

Carla

I'm here all week. Try the mints.

Fatigue. That is one of the most frustrating parts of lupus. To the observer, it can easily be confused with depression or laziness. To the patient, it feels like a crushing lead weight.

What to do? Well, you can go on prednisone. Well all know that story. You can deplete your adrenal glands by sucking down a bunch of caffeine (which still may not work).

What has helped me in the last few years has been eating cooked kale (i know, sounds nuts) and doing chi gung (simple movement and deep breathing; makes sense- getting more oxygen to the cells. Chi Gung is a lot like tai chi, but easier to learn. Make sure you do "healing chi gung," not "warrior chi gung").

And today I've got another idea for you, that I have not yet tested.

A doctor created a product called "joint mints" that seems to help people with joint pain and fatigue. I have no idea what's in it, but it's supposed to be natural. All you need to do to get 2 free boxes is take a couple quick surveys. You also have to have been diagnosed with lupus by a doctor and be over 18. The offer is limited to 100 people, but I just took the survey today, so it's still going on. Here's the original e mail he sent me.

Hi Carla;

I’m writing to offer you a couple free bottles of a (natural/herbal) anti-inflammation product I’ve developed. The only ‘catch’ (there’s always a catch, right?) is that I’d like your feedback – via a series of short surveys. (So it’s a pretty modest catch.)

The product, “Joint Mints” (www.JointMints.com) is obviously intended for joint pain – mainly osteoarthritis – and it works quite well for that. But among the hundreds who’ve provided feedback there have been a few (six) with lupus, and eachreported substantially less joint pain and less fatigue within 21 days of starting Joint Mints.

I didn’t expect the product would help in lupus, but I’m encouraged by what I’ve seen. So to collect more information I’ve set up a dedicated ‘sample-survey’ program and I’m inviting your participation.

If you’re interested, please visit the product page and then this link to learn more about the survey-sample offer http://www.surveymonkey.com/s/5NQ5XYR

Of course I’ll be happy to answer any questions.

Thanks and best wishes, Doctor Steve

Stephen C. Roberts, MD
Chief Executive

So, if this fits you, click away and get some mints. Unless you're like my husband and you hate mints. In which case... never mind.

I just took the survey and look forward to giving them a try. I don't currently have joint pain but I do have muscle pain. And I like mints. It's a good thing they are lozenges, because if they were junior mints, I'd eat them all in one sitting. (Which is why I don't buy junior mints at the store). I'm rambling now.

I'm here all week. Try the mints.

Cheers!
Carla

Free Online Gluten eSummit

Gluten and its role in autoimmune disorders is a frequent topic of discussion amongst alternative medicine practitioners. And, for me, eliminating gluten (and dairy and several other foods I'm sensitive to) from my diet has changed my life.

At one point I was on 9 drugs, plus chemotherapy, transfusions, and Procrit shots to treat congestive heart failure, kidney failure, neuropathy and anemia, all caused by lupus. Now, my diet choices have allowed me to stay healthy with ZERO immune suppressants for the last 6 years.

So, when I saw the information about a free e-summit, I knew that I had to share it here.

http://theglutensummit.com/

Dr. Tom O’Bryan of theDr.com has gathered 29 of the world’s experts and opinion leaders on the topics of gluten-related disorders, nutrition and healthy living for a series of online interviews taking place for FREE from November 11-17, 2013. (Don't worry- it's not all day, every day! One video per day will be posted).

During the summit, you will:

• Learn about the latest research on gluten-related disorders
• Gain knowledge of proper diagnosis/treatment methods
• Ask, “Could this health issue be due to gluten?”

The Gluten Summit is targeted towards both doctors AND patients (really, anybody), so that we all have a better understanding of the issues.

The goal of The Gluten Summit is to shift the discussion and recognition of gluten-related disorders forward by five years. Meaning, lets get the "gluten" conversation between patients and doctors that will be happening five years from now to happen now.

For a lot of patients, discovering and eliminating any food sensitivity, including gluten, can mean more control over their health, fewer ( or zero!) drugs, and feeling better. That is what it has meant for me!

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

Simple Trick to Beat Insomnia

The idea sounded as weird as a tin foil hat, but it worked.

Upon the suggestion of a friend/ psychologist, I got a pair of yellow safety glasses (actually mine are more orange than yellow) to wear for the hour or so before bedtime, to block out the blue light generated by lamps, TV, and computers. The blue light makes your brain think it's daytime, and stimulates you to stay awake. Buying these glasses was the best $8 I've spent in a long time!

And so sexy too! ;)

My husband also uses a pair of these (he looks just as fetching in them).

I've had insomnia most of my life. We have blackout drapes, and I put a small stuffed animal over my eyes to block out any light that slips through from anywhere else. Yes, that's my eye mask- a toy stuffed puppy. Because an eye mask makes my face puffy.

And a white noise machine. That helps to keep me from waking back up when the garbage trucks, lawn mowers, or neighbor's piece of crap car start up. But of course, in order to not be awakened, you have to be able to fall asleep in the first place... 

I've tried attivan, trazadone, benadryl, ambien, meditating, relaxation exercises and tapes, brain wave CDs, stretching, breathing exercises... Nothing really helped all that much. Well, the breathing helped on a few occasions. And the attivan helped for months- but then I developed a tolerance, had to take more, and then I started losing all my short term memory. So I quit taking it.

However... I am generally doing quite well now with the insomnia- or rather, lack of insomnia (knock on wood)! I take chelated magnesium and valerian an hour before bed and Klonopin 20 mins before bed. And the yellow/ orange glasses are the real cherry on top. They really work. It's a LOT cheaper than prescription meds, and so far, these yellow glasses haven't erased my short term memory or made me sleepwalk or sleep-eat. Maybe I can even cut back on the klonopin.

Give it a try, and let me know how it worked for you!





Nighty-night!

Carla 

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

What Advice Would You Give Someone Who's Just Been Diagnosed?

Yesterday, I was asked by a radio host what advice I would give someone who had just been diagnosed. Wow, where do you start?

Well I certainly know what NOT to say (By now, you've all heard my "Top 10 Annoying Things to Say to Someone Who's Just Been Diagnosed." No? it's here: http://youtu.be/NEL6puqRd-I ).

I think I said something about "you have more choices than drugs" and "you can make a difference in your own health" and maybe even "remember to schedule in something fun once a week" and to "take care of your emotional side, because there is a body-mind connection." Something like that. I don't remember. I'm rather "in the moment" when doing radio shows, so I don't usually remember anything I said.

I've not been asked that question on the spot before. Or maybe I have and I said something different.

Anyway, I've been in the process over the last month of creating a "Top tips for people with chronic illness" list, and I would love your input, especially if you yourself have a chronic illness. What do you appreciate hearing, or what would you tell another patient that might help them? Please share your thoughts in the comments section!

Patients helping patients- doesn't get much more therapeutic than that. No one knows like someone who's been there. Thanks for your input! Together, we can make a difference.

Carla

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

Keep Track of Your Health with these Great Free Apps

Got a device that uses apps? Got health goals?

Since I was diagnosed with lupus in 1993, I always knew it was important to keep track of my symptoms. When I see a doctor once a month, I'm only going to remember the symptoms I've had for the last few days. Lousy data=inappropriate treatment. Finally, we are living in the future, and the apps have arrived. Easy for patients to use, and easy to doctors to get a lot of info at a glance.

Against the grain of conventional wisdom, I put my favorite app first. But at least I was smart enough to save the female-only one for 3rd. (Scroll past that one, fellas. The rest are gender-neutral).

Symple, a free app to track your symptoms:

I use this, and I like it. Enter your symptoms (you create the list), and each day, mark the level of each symptom (from "none" to "severe"). If you turn your device sideways, you get bar graphs, showing the ups and downs of each symptom over a month or so. You can also overlay "factors" on top of the symptom graph and see any correlations (factors could be things such as stress, eating a taboo food, having some fun, sleep deprivation, exercise, etc.- you choose the factors as well) .   

At first, I was upset that  the symptom list was limited to 20. Those of us with multiple diagnoses are usually tracking more than 20 things. Not necessarily all at once, but we need more than 20 total symptom slots. But then I learned from @sympleapp that you can "pause" dormant symptoms, allowing you to add more, and not have to enter anything on a daily basis for the ones that are dormant. Well done, Symple!   

I think it would be nice to have a "print" feature, so you can just hand it to your doctor. They do have a "summary" that you can email to your doctor... but, it's just a summary, and not every doctor gives out their e mail address. The summary doesn't show the patterns and correlations with factors (so maybe you bring your iphone or ipad to your appointment?). That's my only "negative," the scanty report. On the other hand, many doctors are "quick glance" types when you hand them your own reports.   

The major "positive": Symple makes the actual recording of the symptoms very easy. A daily alarm goes off to remind you to enter your symptoms (you pick the time). Tap tap tap done. Very nice. Anything that easy, you're much more likely to keep up with consistently. So far, it's for iOS (iphone/ ipad) only, and it's free. I highly recommend this app for people who have a chronic illness (and an i-thingy).

Lupus tracker Pro (not free)

Got an Android instead of an i-thingy? A symptom-tracking app for droid users: LupusTracker Pro organizes your symptoms in a grid-like format. Very similar purpose to Symple, but looks quite different, and is for Android only. I haven't tried it, because I only have an ithingy. $2.99

 

iPeriod (ladies!), free app to track your cycle:

I use this and find it easy and helpful. Great to know when "Aunt Flow" is supposed to arrive, so you don't ruin yet another pair of undies (!), and you know why you're so crabby (PMS!). :) Also good to know if you're late, or missing, or having an unusually long period. If you've kept track using this app (or a paper chart most gynecologists can provide you), you can tell your doctor exactly when things became abnormal.

Blood Pressure Companion (free app for tracking your blood pressure)

I also use this app. Of course, you also need to own a separate blood pressure cuff. The app does not actually *take* your blood pressure. You enter your BP numbers, pulse and weight into the app.

Tip on buying a blood pressure cuff: You should be able to find a battery-operated wrist cuff in the drugstore (or online) for around $40-50. I was being cheap, so I tried using a manual cuff on myself. That was so pathetic, it was comical. I never got the cuff tight enough to get a reading, but if I had, I'm sure my blood pressure would have been quite high from the effort. Just get a motorized one if you have blood pressure issues. It's worth the extra $10. And don't use the sit-down machines at Wal-Mart. They never calibrate them.

I used this app to help me track my BP while I was trying to get off the BP medication. I had to go back on it. Then a year later, I tried again and succeeded (must be the tap dancing!). I brought the iphone into my doctor appointment to show him the numbers.

Depression/ Anxiety measurement App

http://whatsmym3.com/

Measure and/ or monitor levels of anxiety, depression, PTSD, or bipolar symptoms with a 3-minute quiz. The app keeps track of your previous scores, and tells you what range you are in. 

Lose It! (free app for tracking your weight)

I've been using this one for a couple years. I only weigh myself once every 1-2 weeks. I don't like to obsess over my weight. But I do want to keep an eye on it. Generally I can just tell by how my pants fit whether I'm gaining or losing weight. However, any unusual weight gain or loss could mean something weird is going on with my kidneys. Of course, I also want to keep it from creeping up to an unacceptable number, for both health and vanity reasons.

This app has a diet plan that is based on calorie counting, another thing I'm not into anymore (used to obsess over it, but now I just eat "real food" instead of junk, and make sure I get my vegetables). All I use on this app is the data entry of my weight and the graph that shows my weight gain and loss over time (under "goals").

 

Garmin Fit

www.garmin.com/apps

Tells you how long you’ve been going, how far you’ve gone, what your speed is, and how many calories you’ve burned. The app saves all your sessions, so you can see your progress as you increase distance or speed over time. Also, when you activate the option, friends and family members can track you while you walk/ run/ bike. This function is great for safety if you’re out alone. I'm planning to get this, because I love to go for walks and bike rides by myself and let my mind wander. I would like my hubby to know where I am when I'm out exploring alone.

 

Lumosity

www.lumosity.com

Lumosity uses games and quizzes to sharpen your brain and cognitive skills through daily exercises. I haven't used this yet, but I keep hearing how great it is.

 

Pillboxie 

Helps you keep track of your medications. Enter each pill, what it looks like (color/ shape). In the notes you can add things like doseage, etc. You can set alarms to remind yourself to take each pill. I use it just to have a current list of meds (and supplements) for my doctor appointments. I keep all my pills in one of those big pill boxes with 4 compartments for each day. For example:

 

Then I simply take pills with breakfast, dinner and right before bed. But some people would find an app with alarms more useful.    

Did I miss any? Are you using some health app that you love that's not on this list?    

How about you non- app users? How do you keep track of things?    

Me, I did it on paper in a notebook. Then in a Word document (which is now 20 pages, and so far no doctor has been interested in reading it). Finally I created a "health and symptom tracker" chart that I could print out weekly and bring to my appointments. It's impossible to remember all the symptoms you've had since last appointment, and having some kind of system does it for you. 

 

If you'd like to have a free copy of my Health and Symptom Tracker, just sign up in the "subscribe" box (top right corner of this blog) and I'll send one right to ya (or go here to learn more and sign up: http://www.thesingingpatient.com/free_offer ).

For people with serious conditions, and even healthier people trying to improve their well-being, it's all about keeping track of things, and apps- or any kind of simple system- are all about making that part easy.

 

To your health-

Carla

 

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

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

how to help a friend who has a chronic illness

	Dear Carla, I have a female co worker who has been recently been diagnosed with lupus. She is due back at work on Monday. She is one of those people you would do almost anything for. Do you have any suggestions to offer emotional support? She is married and has 3 kids, which must be a drain right there. Beyond emotional support, is there anything else do you think that can be done to help? thank you!! Hi - What a wonderful question. I'm pleased for your friend that you have the desire to help. The first question to ask yourself is: What are you good at? And what are you comfortable doing? For example: sitting and listening, making small talk about light subjects, running errands, cooking, laundry, cleaning, dog-walking, babysitting? Going to doctor appointments together? The household tasks are hard to keep up with when you are ill, and especially if you are using what energy you have to go to work- and then you come home to children who need you. So, I would suggest thinking about what you can offer that you can follow through on, then ask your friend if you can help with that. If she says "no thanks" then just let her know if she thinks of some way you can be helpful, please ask. We can be proud, we patients, and it takes a while sometimes to learn to accept help. But maybe she'll be receptive right away. Thanks on behalf of all of us who have been there for viewing her with compassion and trying to find a way to be supportive. Carla Ulbrich The Singing Patient http://www.thesingingpatient.com Everyone else- when you have been sick (with anything, even a common cold, but especially if you've had a serious and/ or chronic illness), what did you wish people would do or say for you? What kind of help did you want? Please comment! I'm very interested in hearing, because I think it's different for everyone.

Does Diagnosis Even Matter If the Treatment Is the Same?

Hello,
I was test for auto immune and told "probably lupus." I had a skin biopsy which stated "could be lupus." My rheumy does not think it matterswhat the diagnosis is because the treatment is same whether it's lupus or MCTD.

I have or had over the past 30 year all or almost all of the criteria on the lupus list. My problem is that they have not happened altogether at once.

Also, about the kidney: a few times my urine was coke color, but it was never collected at the time. Never know when it will happen.

Is my doctor right that it does not matter what the label of the disease, or should I be told?
Thank you.

Hi-

Thanks for writing in.

I believe it's important to keep a symptom diary so doctors can have the most data to work with.
That is my first suggestion. Start keeping track of your daily symptoms. Also go back and reconstruct as much as you can, when you think this started, what your first symptoms were, and all symptoms with dates as well as you can remember.

It took me 2 years to get diagnosed with lupus, because I kept going in with different symptoms each time, and was so exhausted I couldn't remember all the other symptoms I'd had recently. No one suggested I keep a symptom log. I think it's important to have as much data as possible when you've got autoimmune stuff going on.


If you have odd-colored urine, maybe go into an urgent care center (they are fast and do walk-in appointments and sometimes have a lab on site). Ask for a urine test, telling them your concern about the odd-colored urine. It could be blood.

I think having a specific, definite diagnosis is helpful because
1) it makes it so much easier to go find books and support groups and read up on all your options.

2) Yes the treatment is basically the same for most autoimmune diseases. In mainstream medicine: immune suppressants. In alternative medicine: build up your health through nutrition, rest, and sometimes alternative therapies like acupuncture or reiki, etc. But there are some things that are specifically bad for certain diseases, so I think specific diagnosis is important.

You might like this article by Dr. Mark Hyman on autoimmune diseases: "how to stop attacking yourself" http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Your doctor has to put some kind of diagnosis code on his forms, so he could at least let you in on what he's writing on the forms. I would ask "What diagnosis are you writing down? Why did you choose that one?"

The odd colored urine is important to report.
Lupus can definitely go after your kidneys. You should be able to find out your kidney function without a biopsy. Pee in a cup, collect in a jug for 24 hours, get blood tests. I've had 2 kidney biopsies- they were a royal pain, they are not entirely safe (you have major blood vessels in your kidneys and could end up bleeding internally or getting infected) and we learned nothing from the ordeal. So I say, collect pee and blood to see if your kidneys are OK.

I know from the people who write to me that doctors for some reason are more hesitant to give out a lupus diagnosis. In fact I wrote a blog post about this- it's my most popular blog post, if that gives you any idea what a problem it is to get diagnosed with lupus these days. http://lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-smackdown.html

I would just ask him to tell me what he's writing on your lab forms as the diagnosis code. You have a right to know.

Hope this is helpful. Wishing you all the best


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

Disability Discrimination?

I saw this short film (below, 7 minutes) at the Arts and health Alliance of NJ meeting, and wanted to share it. It's called "Anything You Can Do."

It made reflect on both how I have discriminated or ignored people in wheelchairs, and also some of the stares and weird treatment and inappropriate comments I got when I was very ill (in the airport getting wheeled around and some kid goes "I wish I could get a ride." When I was still experiencing kidney failure and congestive heart failure and anemic, getting out of my van at the drugstore and a cop accosting me for using the handicapped space. Someone saying to me "I wish I could just lay in the bed and read.")

Sometimes people see the error of their ways. Once I was riding in the airport motorized cart, and this middle-aged couple saw me on there, so they asked the guy to stop because they were tired. I guess they saw a young person on the cart ("you don't look sick") and figured, "hey if she can get a ride, they must be giving them out to anyone.") When I struggled to get down from the cart, and pulled out my cane to steady myself, I could feel them recoiling. Because they had assumed one thing then quickly realized they were wrong. Of course, I got better. There are many people who never become fully ambulatory again.

One of the ways physically handicapped people are discriminated against/ left out is just by oversight. Sure, a lot of places (not all places!) have ramps now for wheelchair access, but where do those people sit once they are inside- like if it's a theatre? What about people who need walkers? One theater in West Orange, NJ, just renovated its Maurice Levin Theatre to accommodate more special needs guests. They reduced the number of total seats so that they now have 14 wheelchair spaces with companion seating, and 42 seats with spaces for walkers in front of them.

Comedian and speaker Brett Leake (http://www.brettleake.com/ ) has a wheelchair that morphs into standing position, so that he can look people in the eye and be part of the conversation. Otherwise, he's just looking at knees and crotches. That can only be fun for so long. I was once the short person at an outdoor all-day metalfest in July, at everyone's armpit level in the crush of people in front of the stage. It got old really fast.

Well, without further ado, here's the great little short film called "Anything You Can Do":



Carla Ulbrich

The Singing Patient: Author, 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

Kale! How to not hate it

Kale!
It's the most nutritious food known to man.
But if you don't now how to prepare it, it's the also most repulsive food known to man.

Trust me, I know.
I'm a lousy cook.
I'm such a lousy cook even my trash can says "No really, I'm stuffed. I can't eat another bite. Try the garbage disposal. He looks hungry."

But, I got wind of how nutritious kale was, and I'm always looking for ways to naturally improve my health. So, I went and bought a big bunch of green curly-looking leaf kale at the grocery store.
And I cut it up, tossed it in a bowl, but some salad dressing and it was.... DISGUSTING!
I made myself eat it, but blech! Never again.

I told some friends about my awful kale debacle, and they said "Oh, you have to remove the stems."  OK, I can do that. "And then you have to massage the salad dressing into the kale leaves." Massage my food? Seriously? If I'm not getting a massage, you're darn tootin my food isn't getting a massage- especially when I'm still not really sure I'm going to enjoy the taste of it any more than the first time I ate it, without its "massage." So I didn't even try that, but I did have kale salad at Whole Foods, and realized, okay, if you put enough garlic on it, you can't taste the kale.

So I bought another bunch of kale. And decided to make kale chips. I watched a video on youtube. It looked so easy and sounded so tasty. Mine were... charcoal chips. Burnt.

OK, one more try. And this bunch had a recipe on it- on the tag hanging off the twist-tie.
I tried the recipe and... it was edible! I have since tweaked it, and now- dare I say it- it's practically delicious.

Here it is. Sorry it's not real specific about amounts, but
1) it depends on how much kale you're using and
2) that's just how I roll (might explain the lousy cook thing)

Rip kale leaves off stems (my dog loves kale stems, by the way).
Wash kale thoroughly.
Steam kale until it is bright green but not completely wilted.

stir in a bowl with:
- splash of olive oil
- teaspoon or 2 of fresh lemon juice (OK you can use bottled)
- couple forkfuls of minced garlic (I used the kind in a jar so it's not too strong)
- few dashes of salt
- sauteed onions (optional, but really turns it from just OK to actually tasty)

Serve alone as a side dish or on top of a tortilla with hummus on it.

Even my vegetable-phobe husband likes kale when it's cooked this way.

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.youtube.com/user/carlaulbrich- funny medical songs

Lupus Symptoms

Just under the wire here, another post before the end of Lupus Awareness Month.

 

Here's a list of the 11 common lupus SLE symptoms, developed by the American College of Rheumatology (ACR). Doctors for a long time have agreed that if you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – appears over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes or worsens a skin rash
4. Oral ulcers – sores in the mouth
5. Arthritis – joint pain and swelling of two or more joints
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart  (pericarditis). This causes chest pain which worsens with deep breathing.
7. Kidney disorder – persistent protein or cellular casts in the urine (you would see bubbles in your urine)
8. Neurological disorder – seizures or psychosis
9. Blood disorder (found by lab tests)– 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)
10. Immunologic disorder (found by lab tests)– abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA) (a lab test)
    
     I have experienced #1, 3, 5, 6, 7, 8, 9, 10, 11 out of this list. But remember you only need to experience 4 for it to build a strong case for lupus.
    
    

Other symptoms that do not appear among the ACR criteria but are recognized as lupus symptoms:

1. fever (over 100° F)
2. extreme fatigue
3. hair loss
4. fingers turning white and/or blue when cold (Raynaud’s phenomenon)
   
   I have experienced all 4 of these.

More symptoms that I experienced that are not on either of these lists but I believe were related to/ caused by the lupus:

1. brain fog (confusion)
2. unexplained weight loss
3. congestive heart failure
4. high blood pressure
5. digestive problems (stomach just shuts down)
6. weakness, especially upper body
7. irregularities in menstrual cycle
8. neuropathy (nerve pain)
9. anxiety
10. depression
11. secondary Sjogrens (lab test/ dry eyes and mouth) (It's not all that unusual to have more than one autoimmune disorder)
12. fibromyalgia

Obviously, this is my list so I've experienced all 8 of these as well. 

Part of the reason I experienced so many symptoms was that my illness went undiagnosed for a couple years, then I was not treated for months. It's really important to get diagnosed as early as possible. Then once I got to see a doctor, I resisted the idea of going on prednisone for 6-7 months. Finally I got sick enough I realized I had no other option. It isn't necessary to go through all I went through. It wasn't even necessary for me to go through all that.

Now that I've overwhelmed you with all the possible things that could go wrong, let me mention one "symptom" of lupus that is not that common anymore (it used to be, before we had drugs to treat it):
Death.

I haven't experienced that one yet (came close, but no). And that's because there are treatments available for lupus. Only 50-60 years ago, lupus was a death sentence. Today, for most people, it is not, as long as you monitor the disease and do what you need to do to stay healthy.

There are 2 ways to go once you get diagnosed, and you can do both at once:
- regular medicine (lab tests and medications- regular lab testing is important!)
- alternative medicine (dietary changes and healing modalities)

I'll talk about these in another post.

The important thing is, if you are sick, find out what you've got so you can get a plan of action together.

Think you might have lupus? Here's a quiz from the Lupus Foundation of America
http://www.lupus.org/newsite/pages/lupusChecklist.aspx

Carla Ulbrich

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient

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
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