Not just another statistic

I’ve been quiet for a while now and I wish I could say my silence is because I was so busy with life and doing so well with treatments, had adjusted to my ileostomy beautifully, that I simply didn’t have time to write.  Unfortunately, that isn’t what happened.  I nearly became just another statistic in this fight against chronic illness.  Too many of us have read the obituaries of others with Crohn’s Disease and Ulcerative Colitis that are supposed to be life-altering but not necessarily fatal.  Nearly all of those obits say the person died of “complications” surrounding their disease, not the disease itself.  Is there a difference, really?  Yes, there is.  Every fact sheet I can find says that although there is a higher rate of colorectal cancer and some other cancers in patients like us, none recognize the deaths from the increased risks associated with surgeries, drugs, etc.  Under complications you will find things like eye irritation or mouth sores but not complications that might lead to death or needing an organ transplant.

http://www.ccfa.org/resources/facts-about-inflammatory.html

That’s where I found myself these last two years, fighting, struggling and living day to day with those complications.  What started out in April, 2014 planned as a relatively simple surgery turned into a complicated surgery with 10 day hospital stay after more than one “hiccup”.  Things snowballed and 2014 turned into the year of nine hospital stays, two major surgeries, two minor surgeries, four other surgical procedures, four different antibiotic resistant infections, three picc lines, seven CT scans, stays in the ICU, acute care unit and telemetry unit.  So many antibiotics and tests in so many different departments!  Then there was the home health care nurse and physical therapist and insurance changes, not to mention drug changes.  It was all completely overwhelming and unbelievable, even while I was there, living it.

I spent 2015 trying to get some semblance of my health and life back together.  I’d been left barely able to sit up, not able to walk through the grocery store and in major pain.  Fear crept in.   Getting back on my feet enough to simply dress, eat, nap, make some dinner with my family or go out for a meal has taken a lot of work.  I have panic attacks over everything and nothing.

When I started this blog, I wanted to help others, raise awareness and hopefully let others know that you could do this.  You could still live in spite of chronic illness.  Now I need to know that myself again.   It’s time for me to tell the whole truth of all those complications, even if they are ugly and might not be very inspiring, because in the end, I survived.  Knowledge is still power.  Knowing what can happen, why it happens and what we can do about it may help someone else

Stay tuned . . . 

A few weeks before the 1st surgery in 2014.  I told everyone I was having "just a
little surgery" and made plans for a girls lunch in another month or so.  I had no idea
the dangers ahead or the changes in store.

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.