Tuesday, November 27, 2012

Confessions of a Night Owl: Living with Delayed Sleep Phase Syndrome

"Dawn is when men of reason go to bed" 
~Ambrose Bierce

Recently I've moved from Perth, Australia to Los Angeles. O.K., so not literally, but definitely in terms of my sleep schedule.  As a result, I've spent the last week jet-lagged and adjusting to a "new to me" sleep schedule.

Let me explain...

Delayed Sleep Phase Syndrome

As I have mentioned before, I have something called delayed phase sleep disorder, more properly known as delayed sleep phase syndrome (DSPS).  As with a lot of my chronic illnesses, the cause of this disorder is not really known, although it does tend to run in families (possible genetic link) and it is associated with depression (not a problem I have.)

The disorder often begins in adolescence or adulthood and is rarely seen in children.

Many people with this sleep problem, including myself, refer to themselves as night owls.  But this isn't a sleep preference.  Studies show that there are actual physiological changes that occur with DSPS that demonstrate the body is actually geared up for sleeping at a later time.

Chronic illness can make this syndrome worse. I personally have had more problems with DSPS during my leukemia cancer treatment in 1988 and currently, during and after my Hepatitis C treatment this year.

DSPS Symptoms

The hallmark of this sleep disorder is the inability to maintain a typical sleep schedule, which for the purpose of this discussion we'll call 10 P.M. to 6 a.m.  Someone with DSPS will naturally become tired at midnight or later and, once asleep, will obviously have a lot of trouble waking up at 6 a.m.

This is a more serious problem then just being late to school or work: not getting enough sleep on a regular basis creates sleep deprivation and actually makes the person more prone to accidents.  In fact, there are numerous studies that show driving while sleep deprived is as bad as driving drunk.

Problems DSPS Causes

The main problem with DSPS is for those who need to maintain a "regular" schedule in order to participate in school or work.  Most people with DSPS try and do their best to muddle through, often taking naps when they can during the day.  They will also try to "make up" for lost sleep by sleeping in on the weekends.

Some will choose jobs on the swing or night shifts that fit better with their natural circadian rhythm.

Chronic illness can push the sleep cycle even further out of whack in people who have DSPS.

For me, DSPS means not being able to fall asleep until 4 to 6 a.m. in the morning and waking up in the afternoon.  Since I am disabled and currently not working, it is easier for me to roll with this and make the best of a not ideal situation.  It also means arranging transportation to my doctor's appointments, especially if they are in the morning, since I don't want to chance an accident caused by sleep deprivation.

My Recent "Move"

Things with my DSPS got really bad during Hep C treatment--I started going to bed in the late morning  and getting up as the sun went down.  I think it was the combination of taking chemotherapy drugs (interferon and ribavirin) and developing several different treatment-related infections, both of which served to throw off my circadian rhythm even further.

I knew I needed to do something about this new schedule which really wasn't working for me.  Here are some of the steps I took to get back to an earlier sleep time.

  • I pushed my sleep time back by 3 hours every day over a week's time until I got to my bedtime target of 2 a.m.  This is called "delaying the internal clock." So, for example, if I went to bed at 8 a.m. yesterday, I would go to bed at 11 a.m. today and 1 P.M tomorrow.
  • I eliminated naps while readjusting my sleep hours.
  • I only slept 8 hours at a time.  Normally, I need to sleep between 8 and 10 hours, and sometimes even 12 hours if I have been particularly active during the day, but I wanted to create some extra sleepiness to help me make the transition so I cut back a little on my sleep.
  • I made sure my bedroom was completely dark by using blackout curtain liners.  
  • I make sure I get plenty of sun exposure when I get up in the morning.
  • I avoid using my computer and other light-generating electronics 1 hour before bedtime.  
  • I use the hour before bed for winding down with ambient music, reading and sleep-related tasks: washing my face, brushing my teeth, changing into pajamas, taking medications, etc.

An Ongoing Challenge

I've been feeling pretty out of it since I made my move to an earlier bedtime.  My hubby keeps reminding me that I am most probably experiencing a form of jet-lag and he is probably right.  I just need to give myself more time to adjust and get used to this really big change from living on Perth, Australia time to living on Los Angeles time.

I also need to be super vigilant about getting to bed at my new 2 a.m. bedtime.  It is really easy to stay up later when you have DSPS and I don't want to have to repeat this process again since it is quite difficult to do.

I know with this move I still haven't quite gotten myself onto a "normal" sleep schedule when compared to most other people, but I am happy with where I am at for now.  Maybe with time I can try again and see if this night owl can ever become an early bird.

The hardest thing for me with this new change has been trying to figure out what time of day is best for writing.  Previously, I used to write in the early morning hours.  Now that I am sleeping during these hours instead, it really has been a struggle to find an alternative time for blogging.  So far, it seems the hours after I get out of bed are the best, but this will be something I'll need to experiment with for a while.

Until then, I hope you'll excuse me if my writing and editing suffer a bit during this transition.

PLEASE NOTE:  I am not a medical professional and sharing what works for me is not a substitute for professional advice.  Please consult a sleep specialist if you think you have delayed sleep phase syndrome for a proper diagnosis, medical advice and treatment.

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Thursday, November 22, 2012

Let Me Give Thanks! #Iamthankful #NHBPM

As I am writing this, I can smell all the good food cooking away in my crockpots: a turkey breast with veggies and potatoes in one and a crockpot apple pie in the other. Hubby and I are watching the Thanksgiving parade and various football games on TV while my pups are snuggled up with me on the couch. It's a sunny and nice day here in Los Angeles, not too cold and not too hot.

It's the perfect time to reflect on the top ten things I'm feeling thankful for this Thanksgiving Day 2012:

10. All the blessing the Universe bestows on me despite chronic illness, plus the knowledge that chronic illness can't take those things away from me, ever.
9. My wonderful pet therapy crew who spent a lot of time with me this year on the couch napping.
8. Improved use of my hands courtesy of dual carpal tunnel surgery last year.  It is easier to use the computer and craft now.
7. Learning how important container gardening is to me: it is my exercise, my relaxation and a big source of fresh veggies in my diet. I wasn't able to garden at all during my Hep C treatment, but I will be able to resume soon and I can't wait!
6. A new medication that truly helped me make it through Hep C treatment without a huge flare-up of my dysautonomia symptoms.
5. All the new friends I have made this year via Facebook who are living with and battling Hepatitis C like me.
4. All the old friends who continue to love and support me--you all know who you are.
3. All the support I received from family, friends and health care providers during my Hep C treatment. Thank you!
2. A wonderful hubby who really stepped it up this year, providing me with daily support when Hep C treatment knocked me down.
1. Successfully making it through 6 months of Hepatitis C treatment and continuing to test HCV negative! (see the latest results from 11/11/12 below)

3 month post-treatment viral load

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Wednesday, November 21, 2012

Not the Only One With Chronic Illness #NHBPM

This weekend I learned that I am not the only one with chronic illness in my household.  Our little brown terrier mix Theodor was just diagnosed with Addison's disease.

Theodor's Story

We adopted Theodor 4 years ago.  Brunswick met him at doggy day care and really took a liking to him.  Since Brunswick doesn't like other dogs all that much and Theodor just happened to be a rescue dog that was up for adoption, we took advantage of this serendipity and brought Theodor home for a trial sleepover.  It worked out so well he never left.

A Sick Puppy

A week ago Theodor started vomiting, shaking and became listless.  I took him off food for 24 hours and then tried feeding him small amounts of bland foods, but he kept vomiting.  The last straw was when he couldn't even keep water down, which sent to the emergency vet on the evening of Wednesday, November 14th.

A Trip to the ER

At first the vet thought it might be one of several things: intestinal blockage, gastritis, pancreatitis or liver problems.  So we started with x-rays which didn't really show any problems but reveal an incidental finding that he had a small liver.  The vet became really concerned that something was wrong with his liver and got me all worried too.  So I was convinced Theo needed to have blood work done as well.

In the end, he got some IV fluids and injectable medications  and we were sent home with 3 different pills to give him once or twice a day for the next several days.

I made multiple calls that next day trying to get his lab results.  I eventually got a call from our regular vet with the results, which showed he had an electrolyte imbalance.  Everyone was still working on the theory that he ate something that upset his tummy, code name "dietary indiscretion," and the meds we were given would help him start feeling better.

Not Getting Better

Thursday he ate what I gave him, but by Friday he started refusing to eat.  So I made some homemade doggie baby food, a blend of chicken and rice, and started hand-feeding him.  By Saturday evening his appetite hadn't improved, so I called and left a message with our regular vet asking for an appointment the next day.  Then I called the emergency vet and asked for guidance.  They said to tempt him with people food to get him started eating again, so we went to the grocery store to get some nitrite-free hot dogs and turkey lunch meat, string cheese, cottage cheese and liverwurst.

Getting the Right Diagnosis

He ate a little of all the yummy people food I tempted him with, but not enough to keep me from being worried.  So I was grateful when our regular vet called early Sunday morning and got us in a few hours later.  She reviewed the blood work the emergency vet ran again and the electrolyte numbers bothered her.  She wanted to do additional blood tests to rule out pancreatitis and Addison's disease.

He had to stay at the vet for a few hours to do the test for Addison's, which gave me time to go home and Google Addison's disease in dogs.  I learned it was a hormone deficiency affecting the adrenal glands and that some terrier breeds are genetically predisposed to getting it.  I read about the test he was getting and the treatments, which included the drug Florinef which I happen to be currently taking.

I was comforted to know that once Addison's is diagnosed, pets have an excellent prognosis as long as they receive their medications on a regular basis.

He left the vet Sunday having received a shot of a medication we were told would perk him up if he did have Addison's.  Sure enough, I could see that he was starting to feel better that evening as he was interested in food again.

Ongoing Veterinary Care

Monday I waited patiently for the vet to call with his blood results, which confirmed the diagnosis of Addison's.  He needed to go back to the vet that afternoon for a shot of desoxycorticosterone pivalate (DOCP, brand name Percorten-V).  A prescription for prednisone was called in for him to a specialty compounding pharmacy as well.

Fortunately for all of us, the shot he now needs every 25 day is reasonably priced: $33.  The prednisone, which will last for 60 days, is $35.  These are expenses we're willing make some sacrifices to afford.  After all, Theo is our furry child and these medications make such a huge and visible difference in his state of well-being.

Today Theo is back to his regular self.  He is barking at the mailman and jumping up on the couch so he can snuggle with Mom or Dad with no problems.  He gulped down his dinner in typical doggie fashion and ran down the street with Dad during our evening walk.  He doesn't mind his new medication, which is chicken flavored.

He also has a new godmother, Mo, a blogging friend of mine who also has Addison's disease.  Yes, humans get this too; someone mentioned to me that President John F. Kennedy had it.  I encourage you to visit Day by Day With the Addison Girl to learn more about how this disease affects humans.

Final Thoughts

After this week-long ordeal, I am glad that:

  • we know what is wrong with Theodor
  • his condition is treatable
  • we can afford the treatments
  • his prognosis is excellent

Given the alternative, I am content to be the one in our family with the chronic illnesses that aren't so easily recognized, understood or treated.

It was stressful going through the diagnostic process over this past week with my pup. I know it is easier for me to be sick than for me to watch someone else I love be sick.

I'm amazed how many illnesses both humans and animals have in common.

Isn't it interesting how my experiences in the medical and veterinary systems of care parallel each other? You know, weird symptoms, trips to the ER, misdiagnoses, not getting better, needing to see another doctor/vet, etc., etc., etc.

I find it ironic that the emergency vet clinic, which actually sees a high volume of pets with Addison's and has an Addison's expert on staff, wasn't able to properly diagnose Theodor.

I wonder...do chronic ill people pick out chronically ill pets because they are in tune with such things?

You live with chronic illness.  Is someone else in your home living with chronic illness too?  Share your story in a comment below.

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Saturday, November 17, 2012

Songs for the Sick: A Chronically Awesome Playlist #NHBPM

Today I'm having a little fun, putting together a list of 18 songs that remind me of my chronic illnesses and their symptoms: chronic pain, chronic fatigue, fibromyalgia, dysautonomia, sleep disorders and Hepatitis C.

King of Pain - The Police

Still Ill - The Smiths

Everybody Hurts - R.E.M.

Doctor, Doctor - The Thompson Twins

Shake the Disease - Depeche Mode

Lime in the Coconut - Harry Nilsson

I Can't Stand Up for Falling - Elvis Costello

Up All Night - The Boomtown Rats

Sick and Tired - The Cardigans

Infected - The The

My Heart Goes Bang - Dead or Alive

Sick of Being Sick - The Damned

Take Me Down to the Hospital - The Replacements

Brain Stew - Green Day

I Wanna Be Sedated - The Ramones

I'm So Tired - The Beatles

Oh My, My - Ringo Starr

Fever - Peggy Lee

What do you think of my selections?  And which of your favorites would you add to my list?  
Let me know by leaving a comment below.

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Friday, November 16, 2012

Strive to Grow Where You Are Planted, Despite Your Chronic Illness #NHBPM

This photo was taken in May 1974 by Chief Bwana.

Look at this picture of a tree and what do you see?

If you are familiar with the photographer Ansel Adams then perhaps you'll recognize it. It's called Jeffrey Pine, Sentinel Dome and this tree was perched over the south rim of the Yosemite Valley, opposite Yosemite Falls and west of Glacier Point.

This photo was taken by Ansel Adams in 1940.

I like Ansel Adams and Yosemite, but that's not why I was drawn to this picture.

If you take a second look at this picture, you see a tree that is growing despite an inhospitable environment.  You see a tree surrounded not by soil but by rock, its form twisted, bent by the winds that whipped across it, causing it to grow sideways. Jeffrey pine trees usually grow to be 82 to 130 feet high; this one's growth was stunted because of its location.

And yet it grew and, for a time, prospered.

Due to its location, hiking to the spot where this tree stood was a very popular thing to do in Yosemite.  The earliest photographs taken of this tree date back to 1867.  Once Ansel Adams made the tree famous with his photograph, even more tourists flocked to go see it so they could carve their initials into its trunk.

Unfortunately, this tree died during a drought between 1976-77.  The soil under it simply did not have enough stored water to sustain it.

This photo was taken in 1981 by Chief Bwana.

But despite the odds and the harsh terrain, this tree grew where it was planted.  It just did what it could to adapt to its environment and make the best of the opportunity at life that it was given.  The circumstances were not ideal, but it grew in an amazing place with an amazing view.

View from Sentinel Dome courtesy of You Can Learn.

In telling you the story of this tree, I am encouraging you to try and do the same.

Chronic illness is harsh and presents us with a multitude of obstacles and difficulties. But we have a choice: we can be overwhelmed by the challenges or we can choose to face and rise above them.  It won't be easy, but if we try, I believe we can find good things amidst our trials and tribulations.

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Thursday, November 15, 2012

My Favorite Hepatitis C Health Activist: Lucinda Porter, RN #NHBPM

I've seen the name Lucinda Porter, RN for a long time.  You see, she is a regular contributor to the HCV Advocate website and newsletter, which has been my trusted source for news and information about all things Hepatitis C for many, many years.

I've admired Lucinda for just as long.  Truth be told, I've wished I could be more like her when it comes to my own health advocacy and activist pursuits.  She is prolific in her efforts, contributing newsletters and publications and speaking at trainings and conferences. She's attained the status of a well-recognized and respect expert on Hepatitis C.  She is also a great role model.

So when I saw her promoting her book Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C at the end of 2011, I took a chance and contacted her, asking if I could review her book on my blog.

Her response was an enthusiastic "Yes!"

Since then, I've had numerous interactions with her, allowing me to get to know Lucinda much better, which is all kinds of awesome.  Now I can really see first-hand how much she shares with the Hepatitis C community through Twitter, Facebook and her blogs Lucinda Porter, RN and The Hepatitis Comics: Levity for the Liver.

She gives so much of her time offering support and sharing information with people living with Hepatitis C, especially those going through treatment.   I feel so fortunate to be one of the many people she has encouraged and helped!  She does much of this through several different online support groups she participates in, like the Hepatitis C Family and Friends group on Facebook.

Right now, she is tweeting and post updates from The Liver Meeting, the annual meeting of the American Association for the Study of Liver Diseases on her Free From Hepatitis C Facebook page.

One thing I learned about Lucinda this year is that she lives with Hepatitis C too.  She recently shared her poignant story over on the I Cured Hep C blog: Meet Lucinda; 59, a powerful story of survival living with Hepatitis C! 

It is for all these reasons that I nominated Lucinda Porter, RN today for a WEGO Health 2012 Health Activist Award in the category Silver Stethoscope:

Silver Stethoscope Award
Awarded to a healthcare professional who utilizes social media,online community, and technology to make the world a better place. 

What Are the WEGO Health Activist Awards?

From the WEGO Health website:
The Health Activist Awards were created to embody the mission of WEGO Health: to empower Health Activists. We connect with so many inspiring Health Activists who raise awareness, share information, support their communities, and much more - often without recognition.  Because our network is centered around Health Activists, we knew it was up to us to tell these leaders how great they are.
You can nominate your favorite health activists too!  There are 16 different award categories to choose from and you can nominate more than one person too!  Go to the nomination page or the awards page for more information.

You can find Lucinda's book Free From Hepatitis C at Amazon.com.

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Wednesday, November 14, 2012

Today is World Diabetes Day 2012 #NHBPM

One of my many chronic illnesses is diabetes, so I want to take some time today to acknowledge and celebrate World Diabetes Day 2012.

How I Learned I Had Diabetes

I was diagnosed with type 2 diabetes in January 1999.  To be honest, I don't remember if I was having any of the sign and symptoms of diabetes back then like:

  • Frequent urination
  • Excessive thirst
  • Increased hunger
  • Weight gain or weight loss
  • Tiredness
  • Lack of interest and concentration
  • Vomiting and stomach pain (often mistaken as the flu)
  • A tingling sensation or numbness in the hands or feet
  • Other signs include blurred vision, frequent infections and slow-healing wounds

For people who are developing type 2 diabetes, these signs and symptoms may be mild or absent.

My diagnosis was confirmed with blood tests that my primary care doctor ran, which included an A1c test.

Now I do have a family history of type 2 diabetes on my father's side of the family.  My Grandpa developed diabetes in his retirement years and a cousin developed it as a young adult.  But that doesn't really explain how I got it.  Research is showing that having chronic Hepatitis C (Hep C) infection can trigger the development of type 2 diabetes, especially in people who have a family history of the disease like I do.  According to Science Daily:
...Hepatitis C apparently brings on diabetes at 35 or 40, instead of 65 or 70.
When I was diagnosed I was 34.

The Hepatitis C/Diabetes Connection

Type 2 diabetes occurs when the body cannot effectively use the insulin it produces. Insulin is a hormone made by the pancreas that shuttles glucose from the blood stream into your cells where it is used it for energy.  When this process doesn't work correctly it is called insulin resistance.

Hep C creates insulin resistance.  It does this by turning off an enzyme called AMP-kinase (AMP-K,) which is responsible for maintaining the energy balance in our cells.  When it is turned on, sugar is transported into our cells and energy production in the mitochondria occurs.  When AMP-K is turned off, cells produce fat, which is what the Hep C virus needs to cover the newly replicated viruses it makes inside your cells.  

(I also wonder if this is the reason why so many people living with chronic Hep C infection have such huge problems with fatigue...)

Primary Care versus Endocrinologist

I know that many people who have diabetes never see an endocrinologist or diabetes educator.  Their primary care doctor manages their care and maybe they get sent to a class or two on nutrition or diabetes self management.

Here are some of the benefits I see in having an endocrinologist working with you on your diabetic control:

  • every endocrinologist's office has a certified diabetes educator
  • most also have a nutritionist 
  • they provide ongoing diabetes education and support whenever you need it
  • they can give you free samples of diabetes medications to try 
  • they can give you a free glucometer 
  • they know all the latest diabetes medications and can switch you to something different quite easily

Managing Diabetes is a Big Job

I know that if I hadn't been followed by an endocrinologist since 2003, I would have been in much worse shape!  The biggest problem I've had managing my diabetes has been related to Hep C.  I noticed that when my Hep C viral load went up, my diabetes would start going out of control.  That meant switching my diabetes medications several times over the last 9 years to get things back under control.

Before I started Hep C treatment we discussed what might happen, since treatment can make your diabetes either worse or better.  My endocrinologist sent me home with a sample of long-acting insulin so I could be prepared to start using it if necessary.

And sure enough, I ran into problems with high blood sugars, into the 300 mg/dL range at one point.  Fortunately, the diabetes educator was there to help me learn how to use insulin.  We corresponded weekly via email or phone until we got my insulin doses just right, and it took several weeks to get there.  Plus she called in prescriptions for all the new things I needed: pen needles, lots of test strips, a glucagon kit and a second, short acting insulin.

Thank goodness for my endocrinologist and her team, because I know my primary care doctor just doesn't have that kind of time and flexibility to work with me when things get really wonky with my blood sugar.

Diabetes Education is Important

The theme of this year's World Diabetes Day observance is this: education is of the utmost importance in the prevention of diabetes complications.  

I know this first-hand.  I also know that the best sources for diabetes education are in an endocrinologist's office.

So please, speak up and ask for a referral to see one, even if it is just for a consultation.  Let the experts in diabetes give you the information you need to prevent diabetic complications, like eye damage, nerve damage, heart disease and amputations, so you can live a full and healthy life despite it.  Let them instruct your primary care doctor on what treatment course is right for you and be there to help if your blood sugar starts getting out of control.

I truly believe access to this kind of specialty health care should be a right for everyone who is diagnosed with diabetes.

As for me, we'll have to see if:

  • I have cleared my Hep C infection (I'll know for sure in Febraury 2013)
  • being Hep C negative has a positive effect on my diabetic control

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Tuesday, November 13, 2012

My Favorite Smart Phone Health App #NHBPM

Do you often ask yourself, "Did I take my last dose of X?"  Well then, this is the app for you!

The main function of the Med Helper app is to help you create a schedule for all the medications and supplements you take on a regular basis, whether that's daily, weekly, monthly or something in-between. Then, when it's time to take your medicine, you can set an alarm to remind you.

Plus this app can also track medications you take as needed.

If you put in the time and effort, you can even have this app track your inventory of medications and let you know when you need to order refills. How cool is that?

There are also menus for noting your vital signs (like pulse, blood glucose and pain level), notes about your health care and contact information for your doctors and pharmacies.  You can also schedule and keep track of your medical appointments and create multiple user profiles (for yourself, your spouse, your kids, etc.)

There is a comprehensive reporting menu which has the ability to export all the information you entered as spreadsheets attached to an email or saved to programs like Evernote.  At some point the folks at Med Helper say they will be adding a cloud backup feature and I would gladly pay for the Pro version to use it.

There is some work involved to get started, so be prepared because it will take some time to enter in all your prescriptions, especially if you are taking multiple medications. But once they are in there, you are good to go.  Plus if you stop a medication, there is no need to delete it, which is helpful if you ever need to start taking it again in the future.

I tried several similar app before I found Med Helper and I think this is by far the best one.  It is a pretty comprehensive app, but after using it for a while I do have some suggestions for making it even bettert:

  • add a sync function to the Android contact and calendar for the doctor and pharmacy contact information and appointment scheduling
  • allow the user to create a medication schedule based on the time of day (morning, noon, evening, etc.) instead of specific times (8 am, 12 PM, 7PM)

I was so impressed that I rated Med Helper 5 stars on my review at Google Play.

Quick App Facts

Med Helper

available for Android and iOS

requires Android 2.1 and up

rated 4.3 out of 5 on Google Play

downloads: between 50K and 100K in the last 30 days on Google Play

current version: 2.5 1 1

last updated: 9/11/2012

price: Lite free
           Pro $3.99
website: http://medhelperapp.com/

Screenshots (click to enlarge)

From the Google Play website:


Prescription and Pill reminder. Full featured with logging and data export.  Your healthcare assistant.

MedHelper tracks medication, treatment and appointment schedules and stores information for accurate prescription inventory, gentle reminders and an ongoing exportable log. Taking the right medication at the right time is essential to your personal healthcare. Never miss a dose again.


-Multiple profiles for family healthcare coordination.
-Alarm reminder with snooze.
-Log of past doses.
-Track multiple prescriptions and inventory.
-Track vitals.
-Record Healthcare team’s contact information and appointments.
-Record Pharmacy information and prescription notes (refills available, etc.)
-Flexible scheduling.
-Exportable reports.


Med Helper is designed to require minimal input. For simple situations it can be configured in a couple of minutes. Use it to track prescriptions, refills, medications, doctors, pharmacies and relevant personal info such as allergies.

Notifications alert you when it's time to take medication allowing you to record the specific dosage, snooze the reminder or skip the dosage entirely. Can also be used to track dosages for take as needed medication to help stay within the recommended hourly limits.

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Monday, November 12, 2012

Health Activist Soapbox: Health Care Reform Needs Reform! #NHBPM

I'm of the opinion that we rarely get things right on the first attempt.  I think it isn't until we give it a go for several rounds that we finally get closer to what we want, need or envision.

So when I think  about the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare, what pops into my mind is, "First draft, needs a revision."

I already know I don't like the changes the PPACA makes to:

  • medical flexible spending accounts
  • the medical expense deduction on Federal income taxes
  • the tax on the manufactures and importers of medical devices

You might think I'm just complaining, but mark my words.  I predict that once this massive 906 page law is fully in effect, we are all going to encounter an unpleasant surprise or two when it comes to our health care.

As far as I am concerned, this isn't a done deal.  Sure, lots of people are celebrating this as a historic win, but I see this as a work-in-progress and a new advocacy issue, especially since I've been told that the needs of those of us with chronic illness weren't really taken into consideration during the writing of this new law.  With what little I know, I can already see that the PPACA needs changes, revisions and rewrites, and sooner than later.

There is a lot of ground to cover here, but right now I just want to talk about the changes to medical FSAs.  So here is my opinion on the changes that take effect January 1, 2013 and why I think you need to be concerned too if you are covered by an employer-sponsored cafeteria benefit plan.

Medical Flexible Spending Accounts (FSA)

What is an FSA? A benefit program where before-tax money is deducted from an employee's paycheck and placed into an account.  The account is used by the employee and their family to pay out-of-pocket medical expenses.

Why haven't I heard of FSAs before?  According to the Employers Council on Flexible Compensation, only 25% of eligible working Americans take advantage of this benefit.

How does the PPACA change FSAs?  Before, the employee could decide how much to put into their FSA account every year.  Beginning January 1, 2013, contributions to medical FSAs will be limited to $2,500 for an employee and their family.

Why is this a problem? This change will hurt those who have a lot of out-of-pocket medical expenses, like those living with chronic illness, autism or children with special needs.

Why should I care? Out-of-pocket expenses included things like deductibles, co-insurance and co-pays. If you have health insurance, you will be paying these fees as part of cost-sharing provisions in the PPACA.

What you might not know is that the PPACA puts the ceiling on health plan out-of-pocket expenses to $6,000 for individuals and $12,000 for families starting in 2014.  These limits were set based on rates associated with high deductible health plans and, of course, can be raised in subsequent years due to inflation.

Now I just looked and the current deductibles for our employer-sponsored health insurance plan are no where near this high.  Which has got me worried that my husband's employer could decide to raise deductibles to meet their growing costs under the PPACA.  Sure enough, we are in open enrollment right now and our deductible has gone up, not a lot, but still every little bit means less money for other expenses.

O.K., back to why I think you should care...

In previous years, you could put $12,000 into your FSA and you'd be covered.  By doing so, you saved yourself anywhere between 25 to 40 cents on every dollar spent since you were using pre-tax money.  Beginning in 2013, the worse case scenario is you paying out $9,500 of your hard-earned after-tax dollars to pay for health care expenses.  By my calculations, in this scenario you'll be paying an extra $2, 375 to $3,800 in taxes just by paying your medical bills.

What do FSA experts say about this? My husband's employer uses a company called WageWorks to manage its FSA program.  Jody Dietel, the compliance officer for WageWorks, said in a recent interview that, "...it’s not really a health care friendly policy—it was a revenue grab.

In other words, this is one way working Americans and their families are funding the PPACA.

Are We Going to Pay More for Healthcare?

I guess that is the $25,000 question, isn't it?  Even the respected Kaiser Family Foundation says,
No one knows for sure. Even supporters of the law acknowledge its steps to control health costs, such as incentives to coordinate care better, may take a while to show significant savings. Opponents say the law’s additional coverage requirements will make health insurance more expensive for individuals and for the government.
Like I said, I think we're all in for some health care surprises.

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Sunday, November 11, 2012

If I Could Wear My Pain Like Clothing #NHBPM

If I could wear my pain like clothing, this is what you'd see.

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Saturday, November 10, 2012

Thoughts on Sharing About My Health in Social Media #NHBPM

Why yes, I do a lot of sharing about my health in social media.  What I share and how I share it has definitely been a "decide as I go" process because, by nature, I've always been a "learn by doing" kind of person.

Let me share this evolution with you as well as my current guidelines and rules for how I share about my health, my life and my relationships on my blog.

In the Beginning

When I started writing online in 2006, I did so with the intention of informing others about what was going on with my health problems and my quest to get diagnosed, treated and get better.  I used a blog as an alternative to sending out emails to everyone whenever I had an update to share.  I initially used the now defunct AOL Journals for this purpose.

AOL Journals wasn't what I would consider a true blogging platform like Blogger, which is what I use today.  To me, it had more of the feel of a personal journal versus a blog and the posts I wrote there were more like emails: updates about my health, musings about my life, funny forwarded emails and random pictures, sayings and thoughts. In that regard, I guess you could say it was similar to how people use tumblr today.

I'm pretty sure my AOL Journal was public.  But back then I didn't know or even care about how many people came to visit.  I'm not even sure if my posts there could be brought up using a search engine.  And if I am remembering correctly, I think the only comments I ever got were from my family and friends.

The Switch to Blogging

When I switched to Blogger in 2008, I brought this "blog as journal" point-of-view with me.  When I started writing in earnest in 2009, I didn't have a clear vision of what my blog was going to be about and my posts really ran the gambit when it came to subjects.  At that time I was really trying to develop the habit of writing on a consistent basis, so I often used prompts from NaBloPoMo, the National Blog Posting Month group, which meant sometimes I wasn't writing about my health at all.

As time has moved on, my blogging mission has become much clearer: Let's make life better, together, despite chronic illness.  So I went back and removed some of my earlier posts that didn't fit with my blog mission.  My writing style has changed from journaling to blogging thanks in large part to blogging courses like 31 Days to Build a Better Blog and Content Brew, health blogger webinars sponsored by WEGOHealth, general blogging websites like the SITS Girls and groups like the Chronic Babe Bloggers! over at the ChronicBabe forum.

I guess that is a very long-winded way of saying that, over time, I have narrowed my sharing to my health and those aspects of my life that intersect with my chronic illnesses.

How I Decide What to Share

I always, always, always write about my own personal truth.

Since the beginning, my mother-in-law has read my blog.  She is my most loyal reader and I love her for that.  Knowing she reads every blog post actually helps me in a really important way: before I hit publish, I use her to gauge the appropriateness of my content.  As time has gone on and my readership has increased to include high school friends, former co-workers and my neighbors, my "appropriateness compass" has grown.

I am pretty sure everyone my husband and I know are aware of my blog...and I tailor my sharing accordingly.

Knowing how many people my blog reaches, how it comes up in search engine results and how broadly I promote it on FacebookTwitter and Google+ means I've developed a greater awareness of how far and wide my words can travel.  That certainly gives me greater pause before I hit the publish button!

Since I am currently permanently disabled and unable to work, I haven't faced the issue of social media and employment.  I guess I'll cross that bridge if and when I get to it.

I firmly believe that what I write here must be things I would be comfortable sharing with someone in a public place, things I wouldn't be horrified or embarrassed about if someone overheard what I was saying.  Which means I don't share all the details about my health and relationships here.

As much as I would like to vent, I choose not to publish my raw, unedited thoughts on my blog.  I prefer to use Twitter, and to a lesser extent Facebook, to share reactions and in-the-moment opinions. While my daily life does influence a lot of my blog posts, I choose to let events percolate in my brain for at least 24 hours before publishing about them.  Then I always strive to focus on the big picture, i.e. lessons or insights I've learned from what happens in my life and health care odyssey.

I always think twice, and usually three times, before I use anyone's name on my blog.  It's an easier decision when one of these things is true:

  • the person has a social media presence (blog, Facebook, Twitter, website, etc.)
  • the person gives me permission to mention them in a post
  • using a name is really integral to the story I am telling

If I choose to mention family and friends, it is by first name only.  Most of the time, I prefer to mention their relationship to me (husband, sister, friend, etc.) rather than a name.

I do use my real first name, but I don't share my last name.  I share that I live in Los Angeles because it is a huge city and knowing that won't help you find me.

I trust that my readers are decent, honest people who aren't interested in violating my privacy or cyber-stalking me.  That said, someone did call me at my unlisted home number to complain about a blog post I wrote...and I am well prepared to handle this kind of situation if it ever happens again.

I only write about someone else's story if they give me their permission to do so, and then only if their story relates to or intertwines in some way with my own.  I do share stories about people I have known who are now deceased; in this case, I make sure I only share basic facts about them when describing the impact they had on my health journey and life.

My Rules for Sharing

In summary, I would say that these are my rules for sharing about my health and personal life in social media:

  1. Don’t publish anything you’d regret seeing in print.
  2. Don't publish anything you wouldn't say in person.
  3. Don't publish anything you wouldn't want the whole world to know or see. 
  4. Remember what you publish will go on to live a life of its own, which means you can’t take it back or delete it later.

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Friday, November 9, 2012

My Comfort Care Pack for Fibromyalgia #NHBPM

Wondering what to get your friend or family member who has recently been diagnosed with fibromyalgia?  Here are my suggestions for putting together a comfort care package that shows how much you understand and want to help.  It's filled with items that are useful, practical and helpful.

A Good Book

I know that one of the very first things I did when I was diagnosed with fibromyalgia was hit the book store.  There are many good books about this condition packed with practical self-help strategies that you don't often hear about at the doctor's office.

Here are my suggestions:
The first FM book:
Fibromyalgia & Chronic
Myofascial Pain
I Hurt Like Hell
How to be Sick
Fibromyalgia Tool Kit
Figuring Out

Perhaps the most awesome gift of all?  All these book loaded onto a Kindle!

Soothing Music

There are times when fibromyalgia causes your sympathetic nervous system to over-react, leaving you feeling wired and keyed up.  One powerful weapon I have found to combat this state is listening to ambient music.  Perhaps you've heard it too when you went to see your chiropractor, massage therapist or acupuncturist.  It is instrumental music that often features nature sounds like bells, babbling brooks and whale songs.

Pandora Radio has an excellent Ambient Radio channel.  Amazon.com also has CDs and MP3 music downloads.  I think an amazing gift would be an MP3 Player loaded with an ambient music playlist.

Liquid Mind
Brian Eno
Windham Hill

Comforting Heat

Nothing beats the comforting relief of moist heat packs when cold and damp weather makes your muscles ache.  I use the Bed Buddy line of products exclusively and highly recommend them.

Carex Bed Buddy Neck Wrap

A Little Support

I find maintaining proper alignment while seated for activities helps prevent flare-ups of my fibromyalgia.  That's why I use a lumbar support pillow and a comfort neck pillow when watching TV, reading a book or using my laptop.  And they all have covers that can be easily removed and washed.

This can be used as a
lumbar, knee and neck
This IMAK Happineck
pillow is one of my favorites.
The satin cover keeps
your hair looking nice.

Find Comfort Neck Pillows at Amazon.com

Find Lumbar Pillows at Amazon.com

A Snuggly Throw

Fibromyalgia can also play havoc with your temperature regulation.  So it's always a good idea to have a throw around just in case you suddenly feel cold.  I recently discovered Cocoon blankets which are lightweight and very soft against your skin. Plus they move moisture away from your body to keep you both dry and warm.

Cocoon CoolMax Fleece blanket
Cocoon CoolMax Travel blanket

A Good Laugh

Laughter is by far the best coping strategy.  Having something funny to read, listen to or watch can also be a great distraction from pain and fatigue.  So why not give the gift of a comedy?  Here are some "sick humor" selections that I enjoy:

Sick Humor (CD and MP3s)
How Can You NOT Laugh at
a Time Like This? (book)

Check out Carla Ulbrich, "The Singing Patient," at Amazon.com

So what would you add to my comfort care package? Let me know by leaving me a comment below.

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