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Open Enrollment

Open Enrollment . . . that time period when Americans are eligible to enroll in health insurance, find out what changes are going to be made to policies and what the cost differences are going to be.  You can hardly go two steps without hearing about Obamacare or the Affordable Care Act if you have been outside of your home, on the internet or had a television turned on in the last months/year.  Now, it’s open enrollment, now people are using their new insurance plans, now we get to the “meat” of the matter.

In the last few years there have been some good changes here in the US.  We’ve dropped lifetime limits on insurance policy payouts so those of us with chronic illness or catastrophic illness no longer have to worry about being cancelled because we have cost too much.  We have extended the time that young people can stay on a parent’s policy, giving them time to get established in the world.  And, at some time in the future we will have done away with pre-existing conditions clauses.  We haven’t done it, yet.  Ah, we haven’t?   I thought so, too.

For now, any policy that was in place before some month in 2010 (I believe March but am just too lazy to look that up again right now) is “grandfathered” and they may deny coverage for pre-existing conditions.  Unless, you have had coverage for the previous continuous 12 months through another policy, employer or COBRA then those plans will cover your pre-existing condition.  “Grandfathered” plans that make any significant changes to the plan or premium lose their status.   At that point, then they must comply with all the new laws.  So, not quite yet.

I personally was faced with a tough choice during open enrollment.  The plan I have had for many, many years now was through my husband’s employer.  I also work at home.  His employer made significant changes to the premiums for spousal coverage.    If you could get your insurance elsewhere, they wanted you to do so and imposed a hefty surcharge.  That left me faced with being able to pay for health insurance or being able to pay my part for medications, doctor visits, ostomy appliances, etc.  I had no choice but to change plans to the one offered by my employer.  The cost for the plan is lower but all of my doctors are not “in network”.  Now I have to decide whether to keep doctors or drop them and if I can afford the higher “out of network” price for some visits.  I have been with my rheumatologist for 10 years so I am staying even though he is out of network.   Thankfully, he is going to work with me and allow me to take lab orders to a participating provider instead of doing them in his office.

What about medications this year?  We are arguing over birth control and hearing about cases going to the Supreme Court!  This really bothers me in light of the people with chronic illness who now have to change medication because the ones they have been taking are no longer covered.  Or the people who are now paying a $125 co-pay for one month instead of $50 for the one medication that will work after they have failed so many others.  But what are we taking to the Supreme Court?   Birth control.  If we are really going to fight over something shouldn’t we be fighting over life saving and/or life altering drugs.

I left my rheumatologists office after discussing which drugs were approved for psoriatic arthritis and IBD not with a prescription but with a list of drugs.  Now I have to do homework.  He gave me his choice and which he would prefer to use for me.  I have to find out which, if any, will be covered by insurance, how much the cost for me is going to be and if I will able to afford any of these treatments.   Is this the way we want our healthcare to be?  These aren’t experimental treatments or trials.  These are biologic drugs, approved by our federal Food and Drug Administration and I have failed all other drug treatments.

At this point, if you are an average, healthy person still reading, please be thankful, each and every day for the gift of health that you have.  Do not for one minute take for granted being healthy.  It is the greatest thing you have.   

One of the hardest things about having chronic illness is not the cost to my body but the cost to my family.  It is expensive.  Our new laws have not changed that.  For my family and many others they have made it more expensive.   Over 20 years now I have been telling anyone that will listen that we need changes to our system and when we finally do have changes, they are not what I envisioned.

Also very hard, talking to others with chronic illness and having heard comments such as . . .        

• “If the Tea Party . . .”
•  “Well this President . . .”
•  “You should be happy . . .”
•  “At least now . . .”

Isn’t this the same thing as someone without chronic illness telling us to suck it up when we are in pain?  Or, if we just exercised or ate better we would be healthier?   Aren’t we in this together?  When we are hurting, no matter what the reason, we just want to feel some empathy, some sympathy.  A, “sorry you are having such a hard time getting your medication,” not, “well this party did it” or “at least someone else can get something” would be much better.  And shouldn’t we all still be working together to see that we all get the best health CARE?  We can’t do that unless we are listening to each other.

Being Average and Inspiring

You know what one of the greatest things in the world is to be?  Normal.  To just be an average person living an average life, doing the average things every day is one of the greatest things in the world.  Things like getting up every day and getting dressed all by yourself, going to a job or career of your choosing, feeding yourself whatever you like, watching or playing in a ballgame, maybe coaching your kids, maybe just playing in the yard with them, cutting the grass, walking the dog, doing the dishes and yes, even cleaning the house.  There is great joy in living an average, normal life.

It doesn’t sound very exciting to aspire to be average, does it?   Doing normal things doesn’t sound very inspiring, either.  There have been times when I truly could not cook for my family and they had to carry me Gatorade or help me around.  Being able to cook a good meal is the most awesome feeling in the world.  And, family to help out without complaining when I’m not quite up to it myself is also inspiring.

Every day that I can be average, normal, is truly a gift.  It’s a new inspiration. Another opportunity to work, play and choose happiness.  And if I can do that in spite of having more than one chronic illness and an ileostomy then can’t everyone?  Each day doesn’t turn out like I plan but each day, I try.

For so many people, it is only when they can’t do these normal, average things that they realize just how great that life is really.    This is fuel for me.  I want to wake people up not only to arthritis, IBD, Celiac Disease and living with an ostomy but also to just how great living a normal, average life really is and what that means.  I want everyone to appreciate those days while they are living them not when they are looking back on them.   If people living normal, average lives can appreciate their own, then maybe they will cheer for me when I have a normal day.   And maybe they will be more understanding when I am not having an average day and need a little extra help. 

Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

If only that were completely true.  Have you ever taken a good look at some of the flowers considered most rare?  While beauty is subjective, I don’t find some of them to be beautiful at all.  In fact, some of them are downright ugly to me.  Others are quite delightful to look upon and marvel.

Another quote about adversity reads, “The fire of adversity will melt you like butter or temper you like steel.  The choice is yours.”  That seems a little harsh, doesn’t it?  That we must become like steel when dealing with adversity in our lives. 

Living with and being a survivor of any chronic illness is overcoming adversity, day after day.  Does it make each of us beautiful or temper us or melt us in the same way?    Does it even make one of us beautiful, hard like steel or melt us like butter all the time?  I don’t think so.    There are too many hills and valleys with chronic illness.  We must face each day with new purpose, new resolve and new determination to fight to be well.  Some days are really good and we are really beautiful.  Some days we can’t help but melt like butter.  Each day we need some temper, like steel, but not so much that we are hard-hearted and cold to the world around us.

One of my favorite quotes reads, “I am strong because I am weak.  I’m beautiful because I know my flaws.  I am fearless because I have been afraid.   And, I am happy because I have known true sadness.”

Each of those things applies to my life with chronic illness.  And each of the positive is a choice I make over and over again.  We each choose how adversity will affect us and whether we bloom or not.  I bloom best when I choose strength, courage and happiness.