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
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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