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