The High Cost of Being Unwell


I see it all the time–patients and families making decisions no one should have to face.  Do I pay for food or prescriptions?  Do I pay the electric bill or buy my heart pill?  Christmas for the kids or my diabetes pill?  As a parent, providing for the kids in the short-term far outweighs the intangible “possible” future risks of skipping the medication–UNTIL they have a stroke or heart attack or loose his/her vision (or a leg!) from uncontrolled diabetes.  Hind-sight is 20/20 and now the parent/spouse/friend is permanently disabled or dead.

Why are families facing situations such as this??  Recession? Unemployment? Economic funk?  Poor budgeting?  Maybe these issues come into  play, as we are all human.  However, some medications are $20,000 a DOSE!   What does one do when confronted with a situation like that?  Is it an extreme example?  Not really. Basic maintenance medications can run hundreds of dollars monthly, even with insurance.  In my case– my sheltered,  insulated, well-insured, well employed,  solidly middle class self was forced into bankruptcy by co-pays in about two years.  I wasn’t even in a high-risk group!!

Pharmaceutical companies cite research and development costs, production

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expenses and marketing costs as reasons for such extreme prices, then fall back on “There’s no price too high when a life is saved.”  As if saving life was their goal.  Keep this in mind:  Pharmaceutical companies focus on the medications producing a profit–NOT the ones saving the most lives.  The basic, inexpensive medications that save lives every day are in critically short supply; the companies are producing them less and less because the profit margin is falling  lower and lower.   The same thing goes for common, basic medications stocking crash carts around the US.  During a code, time is CRITICAL.  It doesn’t make sense to fumble around looking for a medication that should be there but isn’t–because it’s in such short supply.  What about the value of life then?  Would this be the case if the REAL goal was saving lives?  REALLY? Sounds like big businesses’ excuse for inexcusable behavior.

It is even MORE inexcusable to force families to choose between purchasing basic, maintenance medications and creating family hardship, especially when he/she is unable to take the least expensive option.  A classic example is medications used to control seizure activity.  The patient MUST have them. On the less expensive end of the spectrum there is Dilantin and the

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cost moves upward from there.  The doctors try each one progressively (based on more than cost, but it is a consideration) until he/she finds the one that “works” for the particular patient.  It may be a medication on the $4 list at WalMart ~OR~ it might be another medication costing $1,000.00 a month.

What is the answer to this mess?  How can we help these families ~OR~ what is the answer to our flawed system?  NO clue….

In some cases, pharmaceutical companies offer programs for those without insurance,  where the medication is either free or steeply discounted.  On the down-side, the paperwork is arduous and medical offices are  not always happy about filling  it out.   It’s also a lot to expect from a sick person if he/she is struggling through an illness alone.  Additionally, some medical staff view the programs as “welfare” and treat the patient poorly.  What the HELL? Another drawback is the lack of options for those who are under insured.  Yes, the insurance pays part of it, but the patient’s co-pay is still $500.  How does one work out that issue?

In the end, these are the patients who end up on disability from preventable or manageable health problems.   After years of working, neglecting themselves to care for the family– and barely scraping by,  he/she is  FORCED onto disability and into the  system in order to survive. Had affordable medications and treatment been available, the whole process could be avoided–or at LEAST postponed for decades.   NOTE:  These folks are separate from those on disability who DO NOT deserve it and suck the life from our system (while they work for cash under the table).  Enough about that tho–I’ll save them for a post of their own later on.

How can we redesign our system to stop creating its own sick?  Where should we intervene in the process to break the cycle of health poverty?  As you can see, I have so many more questions than answers. 

Take Your Medications–Safely!!


 

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Medications embody both good & evil represented in a tiny bottle.  Use them properly & they are safe the overwhelming majority of the time.  Slip up, forget or get lax  in your approach and problems can bring you up short.

 

When managing multiple medications, it’s wise to use any and all tools available.  Make sure you take your medications at the  proper time and in the proper doses–read your label and call the pharmacy if you don’t understand.

To help with the time and dose issue, I use a medi-planner with four different slots in it–morning–noon–evening–bedtime.   They also make them with many other options and they are inexpensive.  If you have no funds at all, contact your local health department, pharmacy or home health office as  free ones are sometimes available.

If remembering to take the medication is an issue, some medi-planners have a timer on them and they will beep or blink until you take the medication.  Pretty ingenious ain’t it!!  Using a medi-planner, with or without a timer, also keeps you from forgetting whether you took the medication or not.  If the slot is empty, then you took it!

Another big safety consideration is using the proper lid for the medication bottles.  If you have children in the home, make sure you have safety lids, and if you must have non-safety tops, keep your medication in a lock box.  When taking controlled substances, keep them locked away and hidden.  They are dangerous for children and they are also the basis for many violent crimes if others know they are there.  When anyone comes into your home, make sure all medications are out of sight.  You can never be too careful!!

Also, it’s very important to store your medications in the original container and make sure the prescription label is legible.  When you travel, make sure you have the container.  Nothing like being stopped in another state with your perfectly legal medication but still being delayed because it isn’t “properly contained”.  It’s a misdemeanor where I live.

If the medication is in a very large bottle, your pharmacist can label a smaller bottle for you to carry on your trip.  Also make sure you pack a bottle of water and a snack of some sort.  I ALWAYS carry a refillable water bottle and a pack of crackers or a granola bar.  I simply cannot tolerate medications on an empty stomach.

Continuing with the safety theme:  Make sure you don’t share your medications with other people.  It’s dangerous and illegal; don’t risk it.  Also don’t save or mix & match antibiotics. That is the way resistant bacteria is born. Take all of your antibiotic EVEN when you feel better.  You should never have “left over” antibiotics unless the doctor tells you to quit taking it or switches you to something else.  Remember:  Feeling better DOES NOT mean the infection is gone.  The antibiotic has weakened the bacteria and your body begins to feel better.  If you quit taking the medication too early the bacteria recovers, then it is resistant to that particular antibiotic.

When you go to your doctor’s appointment, make sure you have a complete list of your medication.  It’s also wise to keep a current, updated list in your purse or wallet-just in case you have to make an unexpected trip to the doctor or ER.  Don’t forget to write down the COMPLETE INFORMATION AND INSTRUCTIONS.  Example:   Levaquin 500 mg by mouth once daily for ten days ~or~ Tylenol 650 mg by mouth every 6 hours as needed for pain or fever. Additionally, make sure you include any herbs, vitamins or other supplements–trust me, it really REALLY matters.  When you can, it’s best to bring the bottles to your appointment and make sure your allergies are listed on your medical chart.

This is just the tip of the iceberg for medication safety.  As medicine becomes more & more specialized, we have more & more doctors prescribing medications and treatments.  In turn, this puts increasing pressure on the patient to be aware and educated about his/her health status and medications.

 

Thoughts on Life, Friends & Pretty Underwear


One day my friend “S” became my patient..  She is always so cheery and vibrant but one day, she began having chest pain.  That bought her a ticket to me.  Of course, the drill began–off with the clothes, on with the monitors, out goes the modesty…

As she undressed, I saw she had on the most AWESOME matching underwear and bra.  Seriously.   I told her how pretty it was and she laughed out loud.  Then she went on to tell the story of why she always wears pretty under stuff  and it rang true with me.  She said it made her feel “better and more put-together”.  After all, “some days, all I can control is my damned underwear!”.  Then we BOTH had a laugh!

The exchange got me thinking…..I suppose it’s the same thing as not saving the good china for “special” occasions.  Every day needs to be special.    When I got home, I decided to clean out my under drawers drawer.  It was pretty bleak and sparse since I’ve been commando for several years– with the exception of work.   I know–TMI–sorry.

I waded through my dozen pair of beige and gray cotton granny panties I wear under my scrubs and pared them down to a dull roar, then I looked at my two bras.  My favorite one is black and purple (really) and I’ve had it since my daughter was six months old; she’s 19 years old now–yes, it’s true.  The other one is beige and I bought it to wear with T-shirts.  That’s it.  Beige and itchy.  Throw it out!  Done.

Then I headed to Walmart, just to see what was available.  Keep in mind, my body is an economy model.  I don’t need any special devices or engineering, just a little smoothing.  Comfort is king in my world.  So….Everything I saw had under wire, stiff lace and padding (lots!) and water liners (REALLY??)  and bling–where were the simple, pretty bras??  I FINALLY  found the Hanes Comfort line.  Soft, tagless, cotton, pretty, simply decorated, throw-in-the-washer bras.  AND they were inexpensive!!  SOLD! Then I found the pretty cotton panties to go with my pretty cotton bras…..Bought myself a nice little gift!  Now I think about putting myself together-at least more than in the recent past….I might look plain on the outside–but under it all, I’m the bomb-diggity!!

P/S:  To finish the original story, “S” was fine and had no cardiac issues.  False alarm, thank goodness!  Now, every time I see her we exchange a look and a laugh.  Sometimes we’ll even discreetly show each other a strap if it’s something especially pretty….

In the Beginning; My Journey into Crohn’s Disease


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My first encounter with chronic illness came when I was 17 years old.  I was in high school, living with my boyfriend, trying to start a life.   One morning I woke up with a crazy case of diarrhea, cramps, burning stomach & a feeling similar to having an apple stuck in my throat.  On top of that, I was absolutely exhausted and couldn’t drag myself out of the bed.  I missed school, took over-the- counter medicines and figured it was a virus.  The symptoms continue for a number of days; I ate clear liquids, baby food and a bland diet but it didn’t help.  At that point, the family speculated  I was pregnant.  It didn’t take long to dispel that myth, but the pesky symptoms persisted and the diarrhea was having a really negative impact on my day–I would have to leave class unexpectedly and ALWAYS had to hit the restroom between each class.  The bus ride home was unbearable and by the time I got home, I was too exhausted and sick to eat.

My weight was plummeting; after a month of symptoms I went to my family doctor.  He did a barium enema and diagnosed me with irritable bowel syndrome in 1982.  He told me there was nothing I could “do” for it and it couldn’t be fixed.  However, he quickly assured me it wouldn’t “hurt me”, just be an inconvenience.  Oh what an inconvenience it was….. He told me to increase my fiber intake and use over the counter diarrhea medications.  Sooo…that’s what I did.  Aren’t doctors supposed to know?

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Adding to the mix, I lived in an isolated area and had to drive an hour to work every day–of course that also meant an hour home.  I had four restrooms staked out and stopped at all of them twice every day.  On the positive side, I made a lot of friends!  Of course, I always hoped  nobody was waiting to go in after me….That’s all I’ll say about that.  I also ALWAYS carried a change of underwear and pants.  Yep, it happens and life doesn’t stop.   Hadn’t I been told to cope with it?

Years pass and  my weight remained chronically low,  I was always wiped out, waking up at night with awful abdominal cramps and rushing to the bathroom.  I was “going” 12-20 times a day or more, even taking OTC medications.  Some days I couldn’t leave the house.  I had no appetite, periodic rashes, sores in my nose and mouth, achy low-grade fevers., sore joints and a hacking cough.   I was REALLY YUCKY and barely managing my life.  I decided it was time to go to the doctor again.

I  go see my family doctor (not the same one as before) and she started out with the “Oh it’s stress” and “Let’s make sure it’s not parasitic.”  Yes, really.  So I was sent home with a pat on the head, two sample cups with popsicle sticks and instructions to come back with samples.  Of course, I had no insurance and each trip to the doctor was $75 back then, so I couldn’t afford to go back and I thought her pat on the head was condescending bull shit.  I spent years navigating a system that was stacked against “poor people” and it was like being mired in quicksand.  I couldn’t get past the “Oh, it’s stress honey, you have a lot going on.  You poor little thing–you’re so tiny.  You really should eat.”  I was convinced I was “hysterical” and unstable. What a joke.

I get SO tired of bland food.

I was also  convinced that I was weak and wimpy.  Apparently everyone lived like this and managed fine.  It’s all in my pitiful little head–according to those “in the know”.

Year after year passed.  I became a nursing student and still knew something was wrong.  I didn’t pursue a diagnosis because I was a pro at “managing” and the thought of being blown off again was unbearable.  My symptoms became worse and worse, I had rashes all over and caught every bug that went around.  My joints hurt, my stomach hurt and I had a fever.  I trudged on.  Finally, in 2004, the train jumped the track.

I came home from work and crashed on the couch as I normally did, aching and chilling. When I checked my temperature it was 102.0, which was much higher than usual.  My abdomen was killing me and I felt beyond awful.  As I sat there crying, I decided I had to get answers or die because I was too exhausted to breath.  Then I began hallucinating from fever….That night I went to the ER, hoping to get an antibiotic prescription and instructions to follow-up with a Gastroenterologist.  Instead,  I was admitted to the hospital with a bowel abscess and stayed in the hospital for nine days.  When I was finally discharged I came home weak, shaky and on a ton of antibiotics.  My initial diagnosis was diverticulitis.  I didn’t get better though, and at my follow-up with the specialist, he scheduled me for a colonoscopy.

After my scope was finished, I drowsed and languished on a stretcher, still half-loopy from the versed and diprivan.  The doctor came in, leaned over the stretcher, put his hand on my arm and said “It looks like you have Crohn’s but we’ll have to wait for the biopsies to come back.  I’m leaving you a ‘script.  Take it and see me in two weeks.”  Then he was gone.  I felt like I was taking orders from him on the clinic floor.  Nurses don’t require wordy explanations–lay it on the line and get out.  That’s what he did but there I was–stoned and confused.

My Sweetie was my chauffeur that day.  When I got into the car he asked me what the doctor said.  The whole thing felt like a dream.  I told him I had Crohn’s disease and explained a little bit about what it was.  Most of it was retrieved from the small amount of time I spent on it in nursing school, so I knew I had a lot of learning to do.  Remembering my classes on Inflammatory Bowel Disease, I recall thinking “I bet that’s me.”  Damn,  I was right.

My Sweetie was so optimistic saying “You’ll take it in stride and manage it like you do everything else.”  He wanted to be reassuring and supportive.  I felt bleak and desolate.  I was totally wiped out and NOT managing…..

I tried to go back to work after a couple of weeks, but was still so sick I couldn’t fix myself a sandwich without resting.  My manager saw my condition my first day back and sent me home.   She encouraged me to use my short-term disability option, so I did.  I was truly miserable.  Still on high doses of steroids and antibiotics, I couldn’t sleep, was in constant pain and had no hope for manageable treatment.  This cycle continued for two solid years.  In the hospital, off work, on TONS of medications, feeling awful,  paying $1,000 a month in medication co-pays,  getting more behind financially every day.  Finally, I filed bankruptcy, quit my full-time job and started working part-time.  Over the next three years, I started doing better & better but I feel like I’m balancing on the edge of a razor blade.  My life will never be the same.

Every day I plan my life around taking my medications, keeping a positive outlook and maintaining my health.  I sleep enough, I take off work when I feel bad, take my medications like I’m supposed to and generally try to be pro-active in staying healthy.  Now, my days are thought-out and planned.  I have to have rest periods and take breaks where before, I used to barrel right on through.  When I do too much on a given day, it takes me 2-3 days to recover; when I have a flare, it can last for months.  When it’s over, I still feel different.  “Friends” drop off of the radar like flies.  On the good side, I know who my real friends are now.  The list isn’t as long as I thought it would be, but it is very strong.

Unexpected Response


NO!

Someone very dear to me blew me off to spend time with someone else.  Oh well, it happens. Right?   However, situations like this have happened frequently over the past few months.

My answer to the situation was to talk about it, civilly, one-on-one.  The response I received???  You’ll NEVER guess…..Not in a million years………..  “When you cancel because you’re sick, I don’t get upset with you.”

Honestly, is one situation equivalent to the other??  Isn’t that like comparing apples and rabbits??

My mouth dropped open– and for a split second I wished them to burst into flames.  But I recovered my composure and simply said.  “Oh, whatever” and moved on.  Since then I feel differently about the relationship.

Any of you  have someone you love implying that you have a choice about being sick??  

I Wanna Be a Snow Bird


It’s 18 degrees F. and snowing in KY.  And sleeting.  HATING it!  I’m not ready for winter.  I did NOT get the memo and I formally request a do-over!!  Note that I have had zero success with my demands.

Winter is cold & I don’t like it.  Once upon a time it didn’t fill my mind with angst. However, now that I have health issues & joint problems, it is a real problem.  Cold weather = stiffness & pain.

Overall, I’m managing and will continue to do so.  I won’t enjoy it though & I hate having to find sneaky ways to cover up being ‘less able’ to do normal things.  Oftentimes, when I drop something, I can’t bend or squat to pick it up.  That one’s tough to play off if someone sees me.  I can’t open containers I normally use.  Either I ask for help or use one of my handy openers.  I like handy devices!  Sometimes I can’t turn my door knob or open my car door without great creativity; I also have trouble connecting IV tubing at work & a few other things.  So far I manage well, but cold weather makes it worse-dang it!

Most times, I managed well with heat, stretching & light weights, plus Tylenol (no NSAIDS for me!).  I save the heavy-duty pain medication for “hard times”, after everything else has failed.  At that point, I just go  to bed.

Anyway….Someplace warm and slightly tropical would be GREAT!!   Oh, to day dream…..

Thanks a Bunch Wendy!


I want to extend a personal thank you to Wendy for hosting the November Graceful Agony Blog Carnival!!    You can check it out at Transform Your Chronic Life .

 

Each of us took some time to talk about gifts for chronics & gifts that have impacted our life.   Much appreciation to Wendy for being the hostess with the mostest!!

 

Wishing everyone a safe holiday season filled with happiness!!  Sending love from Autoimmune Maven..

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