Tuesday, January 29, 2013

Saying Goodbye to a Chronically Awesome Friend

"Live fast, die pretty."  That's what one of my chronically awesome friends used to say.  Used to, because she died this past Sunday from complications of her multiple chronic illnesses.

As I sit here trying to catch up via social media to find out just what went wrong, I see once again that she and I share two of the same illnesses: fibromyalgia and liver-related diseases.  These are the reasons we connected over two years ago on Twitter.

Then when I shared my adventures of going to the Mayo Clinic in Arizona for my dysautonomia work-up, she followed with interest because she was thinking of making the same trip to get her assorted illness worked up and her treatment better planned and organized.

In the end, we both agreed:  our illnesses sucked and the time and expense of traveling to the Mayo Clinic for a workup and recommendations was well worth it.

Now I don't want you to get the wrong impression--we were really just acquaintances.  I am not privy to the details of what lead to her recent departure. What I do know is that she had been in and out of the hospital during the last several months and receiving home health care in between.  A mutual friend shared that she thought she might have picked up an infection while in the hospital that, in the end, her chronically compromised immune system just couldn't fight it off.

Her close friends say that she died a fighter and a warrior, comforting her friends to the end.  I see the evidence in her social media footprint that she knew the Grim Reaper was close, but she managed to stay several steps ahead of him up to the bitter end.  She relished her wins against him.  And she relished her last birthday in November and the recent Christmas holidays, events she was able to enjoy despite his presence offstage, lurking about in the wings.

I know her friends and family find comfort in the fact that with her death, her pain and suffering have ended.  I acknowledge this as well.  But I am also upset that in life she wasn't able to find the pain control and disease management she needed to have an acceptable quality of life and to stay alive a while longer. I know that these were issues she struggled with for years.

Which leads me to ask demand: when will medicine truly alleviate our pain and suffering?  Because I know I don't want death to be what finally takes away my chronic pain, chronic fatigue and the assorted other symptoms of my chronic illnesses.

Before chronic illness destroyed her healthy life's plans, my friend was a honest-to-goodness, real life ballerina.  So today it gives me comfort to think that she is finally able to dance again.  Yes, she is dancing in heaven...

Goodbye my friend.  Rest in peace.

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Monday, January 21, 2013

Will You Be Able to Afford Your New Health Insurance?

Last November I wrote about my displeasure with the changes coming in 2013 to medical flexible spending accounts (FSA), the result of more provisions of the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare being implemented.  But those aren't the only changes looming on the horizon.  2014 and 2018 are also years when more big changes are coming.

Increased Out-of-pocket Medical Expenses

I was quite taken aback when I found out the ceiling on health plan out-of-pocket expenses will rise to $6,000 for individuals and $12,000 for families starting in 2014.

First, let's answer the question: So what are out-of-pocket medical expenses?  They include things like deductibles, co-insurance, premiums and co-pays; they are the "cost-sharing" provisions in your health insurance plan.

I logged into our health insurance plan's website to see what our out-of-pocket maximums are for this year and discovered they are no where near the new 2014 $6,000/$12,000 limits.  Then I got worried.  What if my husband's employer decided to raise the out-of-pocket maximums to the new limits in 2014?  How much would we have to pay out-of-pocket before our health insurance benefits actually kicked in?  And how are we going to be able to afford to pay these higher out-of-pocket medical costs?

Harder to Deduct Medical Expenses

Adding insult to injury is that fact that this year, deducting itemized medical expenses on your Federal taxes is going to be much harder.  Before, you could deduct any expenses that where higher than 7.5% of your adjusted gross income.  Starting in 2013, that percentage rises to 10%.

So we are facing higher out-of-pocket medical expenses and a reduced ability to deduct them on our taxes.

New Trend: High Deductible Health Plans

So how did our legislators decide on these new out-of-pocket medical expense guidelines?  They were set based on rates associated with high deductible health plans.

According to Kaiser Health News, high-deductible plans are becoming the new trend in health care coverage. They say that Fortune 500 companies like General Electric, Chrysler, Wells Fargo, American Express, JPMorgan and Whole Foods are all switching the health plans they offer their employees to this model.

Historically, most people who got a high deductible health insurance were healthy.  They didn't think they'd need to use their health insurance, so they choose this option "just in case" something might happen.  Hence these plans were sometimes called catastrophic coverage plans.

Employers like these plans because it means they can contribute less to their employees' health care costs.  In the changing world of health plans, these kinds of plans are now being viewed as "consumer-driven" which adds to their appeal.  Here's how this thinking goes:

If the employee has to pay with their money first to get medical care, then they will:
  1. take better care of themselves to avoid needing medical care 
  2. be more concerned about medical costs and 
  3. opt out of unnecessary tests and procedures when they do go to the doctor

Are These Changes a Recipe for Disaster?

O.K., so I have some questions and concerns.

How is the average patient supposed to "shop" for low-cost, quality medical care when this kind of information is currently not available?  And how are patients supposed to know what medical tests and procedures are needed and which ones aren't?

What will we have to do?  Take our laptops with us to medical appointments and use Dr. Google to figure out if what we are being told is the standard of care?  Or worse, delay care so we can research the alternatives before making a decision?

I think this high deductible health care model is so unfriendly to those of us with chronic illness!  How we all *wish* it were as easy as just "taking better care of ourselves."  We need to see our medical providers just to maintain what reduced quality of life and level of function we do have.

Plus is lower cost medical care really the answer for people living with chronic illness?  Many of us started with general practitioners when we first became ill and quickly learned that we needed specialists in order to get accurate diagnoses and treatments.  Specialists will cost more to see, but in the long run, they are often the only ones who possess the knowledge, expertise and skills needed to keep us stable and functioning to the best of our abilities.

How I View These Newest "Reforms"

So we are all going to be mandated to pay for medical insurance.  Then we are going to have to pay high out-of-pocket costs to access the health care system before that medical insurance kicks in and starts actually paying the bills.  Which means some people will have a whole new problem--will they be able to afford to use their new health insurance?

I think offer health plans that erect financial obstacles to obtaining necessary medical care is ridiculous.  How does this make any sense?  I think these new guidelines and trends will mean that people will forgo medical appointments when they don't have the money to pay out-of-pocket expenses.  And when people put off seeing a doctor because they can't afford it, this increases the number of health complications, trips to the emergency room and hospitalizations.

So is health care reform really helping us or just making things more difficult and complicated?  I have serious doubts that this will make health care more accessible or affordable.  I'd love to hear what you think.

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Monday, January 7, 2013

Ready to See Where Life With Chronic Illness Will Take You in 2013?

Wow, time sure does fly!  I can't believe that 2012 is over already.  Really.  I feel like I got so little done and missed out on a lot of things last year because of Hepatitis C treatment.

I am so looking forward to this new year and:

Health Stuff

  • fully recovering from Hep C treatment aka chemotherapy #2
  • getting the final results of my Hep C treatment in February
  • seeing what health issues and limitations I am left with once I am Hep C free

Life Stuff

  • getting more things done at home--nine months of neglect and my house is a disaster!
  • getting out of the house more often
  • returning to a regular schedule of blogging and writing
  • heading back out to my container garden and sharing my adventures at The Seated Gardener
  • seeing if I can turn my hobbies into an Etsy empire

Now this is going to be a process, like going on a trip.  I start where I am today, point A, and keep moving forward, for the most part.  I don't really have a destination, at least not one I am 100% sure I can reach, so I'm traveling by Zen navigation this year.  I wonder where I will find myself by the end of the year!

As with every trip, there are road signs, traffic lights and rest stops along the way.  Here are the ones I am going to pay extra special attention to:

  • The green light:  Every day I am inching closer to my previous level of functioning, around a 30 out of 100, which IS something to celebrate.  Yippee!
  • The yellow light:  This is a delicate balance, finding my new baseline. So I have given myself a generous 6 months more of recovery time, plus or minus another 6 months!
  • The red light:  We all know how easy it is to over-do things and wind up paying big time for pushing our limits too hard, too fast and/or too frequently. So I need to be CAREFUL and keep using the coping skills that have served me the best: planning, pacing, resting, saying no and having some fun every day.  

You can tell that this sick chick has learned some lessons from 8 years of life with disabling chronic illnesses...

To tame my enthusiasm and avoid getting myself into trouble, i.e. more pain, fatigue and flare-ups, I'm using some new tools this year:

1)  Evernote: this is a cloud-based note-taking and file-organizing program that I can access on my computer, Kindle and Andriod phone.  I use it two ways: for my blogging/writing (posts, ideas and book chapters) and for collecting and storing items of interest and inspiration I find online.  While using it on a computer, you can clip almost anything to Evernote, from a recipe, crochet pattern or photo to an entire article or blog post. You can also attach voice notes and files to your notes.  Plus check out Clearly for reading webpages much more easily.

Evernote has helped organize my thoughts and ideas into one place, and it's a place where nothing ever gets lost!  Plus my stuff can be read, searched and accessed from almost anywhere, which is part of the Evernote philosophy: my data is mine, it is protected and it's portable.

2) Astrid: since I have been ill, I've avoided using traditional "to-do" lists because, well, they make me feel like crap when I fail to accomplish my tasks and goals.  But Astrid takes the list to a whole new level, one where this funny little red octopus gives you gentle reminders and sweetly encourages you to get things done.  Plus Astrid wants you to make all kind of lists, like books to read and movies to see...you know, fun stuff.  And she gives you the option to delegate a task to someone else (yes!) by sending it to one of you contacts.  Watch out, hubby!

I have been using Astrid to facilitate my famous "brain dumps"  and get a handle on all the things I want to do now that I have more energy to actually think about and do things.  Now I just need to be practical and reasonable by setting very generous due dates on the things I choose to work on and letting most other things sit for just a while or two longer.

So what about you?  Are you ready to hit the road and see where 2013 takes you?  What road signs are you going to be heeding more closely this year? What companions are coming along with you that will make your trip easier?  I'd love to hear about your plans, so leave me a comment.

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