“You have a lot of pills!”-and- How your Illness is your JOB

I wish I could somehow classify those that exclaim “Wow! You sure have a lot of pills you take!” or “You take a lot of medication!” or “You must be really sick, is it good for you to take so many pills?”, as rude insensitive people.

I can’t

A lot of bottles can un bottle some commentary.
A lot of bottles can un bottle some commentary.

That’s because even my own daughter at one time burst out with what she was thinking when she saw my small case of medication.  She simply exclaimed “That’s as many pills are Bill is taking!” (Bill being a family member in hospice care). My daughter is a kind caring person.  My neighbor that also saw the array of bottles is also a nice person.  He couldn’t help commenting “Wow I can’t believe how many pills you take!”  It’s just simply the number of amber colored bottles all jammed together in a small case I use to hold them that can cause these outbursts.

I try to be very discreet.  I keep my medicine in a long thin case that could hold spices or knitting needles and a few balls of yarn.  I also have a method to the madness.  More than one friend has expressed concern about how I keep them all organized.  Suggestions of pill holders I accept with a smile.  There is no pill holder that can keep track of these medications.

My system is take the bottle out after taking a daily pill.  Twice daily  pill bottles are moved from one side to the other.  Pills for “as needed” use stay in the middle.  I keep the pills in the bottles, as it helps me track which pills I’m running out of.  CVS Pharmacy and I are good friends. I’ll visit at least once a week and often twice.  Keeping the pills in the bottles with the names (many names are very alike), helps me order refills.  I have to order in time as things like “Seizures” and “Heart palpitations” and “shock” are consequences of missing even one dose.  I once had a $200 courier delivery of a needed medication, because I had miscounted.

There still isn't just one treatment. Most chronic illnesses require multiple mediations and treatment.
There still isn’t just one treatment. Most chronic illnesses require multiple mediations and treatment.

People see my medication because I have to take medication at all times of the day.  If you are with me for long enough, you’ll see me open the case and move a few pill bottles around.  I’ll also often have to say “Look, sorry but can we drive thru and get some fries or a snack?  I just need a little food or this medication will come back up.”  I also carry Cliff bars and Atkins bars for the stomach upset that invariably follows ingesting several of my daily medications.

When I was first diagnosed with Hashimoto Thyroid I was pretty upset about thyroid medication. The fun part of Hashimoto is that it slowly destroys your thyroid.  Your medication is always in need of rechecking and tweaking.  It’s also hard to time thyroid medication.  I found I have to take it in the middle of the night to have a fully empty stomach.  My arthritis medications require a full stomach.  You have to not only take your pills, you have to take them correctly.

When I worked my way up to about 8 medications, I began to rebel.  My husband even talked to my personal physician about how many pills I was taking. When she recommended one more, he called her up to complain.  The thing is we are lead to believe that not taking medication is good.  However, if you don’t have to take medication that means you have good health. If you are prescribed medication and you don’t take it, you then can become very ill.

No cure today and we know RA attacks even children.
No cure today and we know RA attacks even children.

Doctors talk about how one of their toughest jobs is getting people to take their medication.  People have high blood pressure, but they feel better, so they skip taking the pills.  If they go on a trip and forget the pills, they don’t worry about it.  One of my neighbors used to  skip taking his blood pressure medications when he went on trips.  He had a hart attack, not knowing missing 2 weeks of his medication was a truly serious thing.  Now he always takes his medication. Consistently taking  your medication is an important way to stay healthy.

It’s hard to convince people that I’m not going to die tomorrow when they see all my medication bottles. Yes I will probably die before you do!  I have a 2 serious types of arthritis, and a thyroid issue.  Most people with an immune disease usually have more than just one type of immune/inflammation disease.  I was pretty much assured once I was diagnosed with Hashimoto that there was something else going on.  The pills are a compromise between quality of life and longevity.  The pills do show I am indeed very ill with more than one serious illness.  It’s just SEEING all those pill bottles that brings home the reality to people.  Yes I look fine.  I look fairly normal.  Sometimes I use a wheelchair, but most times I get by with a hiking stick (I like it better than a cane).  The pill bottles bring it home to people that I am truly very ill, no matter how well I look on the outside.

I also might live longer without all this medication. My liver has in no uncertain terms clearly shown it dislikes all these medications. However, I would certainly not live better.

Every joint ,from head to toe, is unhappy
Every joint ,from head to toe, is unhappy

Now the downside of medication, besides scaring your friends and family.

The medication effects your mood.  You will never be that healthy person you have memories of ever again. That really sucks.  That sucks big time. Some days I cry for that person.  She’s gone.  Accepting your disabilities means mourning that healthy person who is now gone.  I know I miss her a lot. This is a good thing to do, just like mourning for any friend that is not coming back.  Friends and family don’t always realize that person is gone.  Not coming back.  “So when do you think you’ll feel up to kayaking trips again?” Never, the person that kayaked around the lake doesn’t live here anymore.

Also, often when I wake up in the morning I pause a moment as I know it’s as close to me without meds as it’s possible to get.  Most of my medications are long term.  Part of them stays in me at all times.  Still at night many of the medications wear off.  I awake because of pain.  There is no longer waking up not in pain.  I’m not taking achy joints or being a little stiff.  I’m talking severe pain that wakes me up.  I hurt so much that  I can no longer sleep.

It takes a strong heart to live with a chronic illness.
It takes a strong heart to live with a chronic illness.

That’s alright though as I know I can take my morning anti inflammatory pill.  It has to be near the bed or someone has to bring it to me. I often can’t walk well before I’ve had it.  I risk falling or my knee just giving out. I have to take the medication and wait for about 30 minutes for it to start working.  Then it is safe for me to move.

What is surprising is that sometimes it’s tough to take those morning medications.  I want to spend a little time with the real me.  “This is me without medication” I think.  I check in with myself.  It’s usually going pretty badly.  Mentally though it’s nice to not be influenced by medication.  Depression is a side effect of several of the medications I am on, including the new one I’m helping to test.  Some of the medications make me drowsy, some make me cranky, some make me less sharp.  Despite the pain, it’s good to check in on the old smart funny person that is sometimes hard to find.

I am happy to say the  longer I am managing these illnesses the more I am also managing my personality on medications.  I’m more able to step back and say “Well that’s not me, that’s a medication” and actually over ride the pill.  The old me is more and more able to toss aside the psychological effects, but it’s a lot of work.  I’m still learning.

Some days...nothing seems right!
Some days…nothing seems right!

I also check in with myself in the morning to remind myself “Without medication, this is how people lived”.  The thyroid alone would be a horror without synthetic replacement. I’ve seen photographs of people before treatment for a disease like Hashimoto and it’s not pretty.

Arthritis also demands medication.  I would be blind from the one type I suffer from, and the other would require me to be in bed most of the time.  I remember as a young child visiting my great grandmother.  She resided full time in the bedroom at my grandmother’s house.  She had been in that bedroom for over 25 years.  Her hands were gnarled and misshapen. She was  blind and my grandmother spent hours tending her to try to alleviate her pain.  While I also spend many hours in pain, and will probably end up spending more time in a wheelchair than I do now, I also have treatments that will slow the progress of the diseases.

There isn’t a cure for most inflammatory diseases.  There is management.  There are an ever increasing number of medications for patients to try. None promise a cure. It’s always “Some patients feel up to 30% better on his medication.”  It’s a very tough battle, but I’ll take 30%.  My morning pre medication check in reminds me it could be a lot worse.

Mornings are probably the worst time for most with a chronic illness.  A lot of people with a chronic disease awaken and for a moment or two forget that things have changed.  Then comes the realization “Oh right, I hurt because of that disease that’s never going away.”   It helps if I don’t dwell on it too long and JUST TAKE THE PILLS!   I know the visits with myself aren’t really emotionally healthy if they go on too long.  The sooner I accept each morning that I have to TAKE THE DAMN PILLS, the sooner I can get through a day of managing the illnesses.

My job, to paint on that smile and do the best I can managing the diseases!
My job, to paint on that smile and do the best I can managing the diseases!

My regular doctor reminds me that MY JOB is managing these illnesses.  I complained to her once that I had “no job” and she said “No YOUR JOB is to take those pills correctly and manage  your diseases.”  Her word really helped change how I felt about the illnesses.  It is work.  It is important work.  Many people consider yoga or running or meditation important adjuncts to their life, I have to consider managing my illnesses are far more than a adjunct.  This is MY JOB.

When we wake up in the morning we don’t always want to go to work.  We often have suffered through a job we don’t like. I don’t like my job.  But it’s what I have to do.  Next month I start a new type of physical therapy that will hopefully allow me to regain some strength without damaging my joints. I am not looking forward to what I consider overtime!  I hope though it will help me do my job of illness management better though.

There's always a reason to smile. Even if it hurts.
There’s always a reason to smile. Even if it hurts.

To my friends with a chronic illness, remember, your illness is YOUR JOB.  Even those of you with jobs that give you a paycheck, you have a second job of managing your illness.  Don’t let anyone ever say that you “do nothing but take pills.”  We work far harder than most people.  The psychological challenges and the physical challenges we face every in my opinion means we all deserve stellar job reviews for just getting through the day.

And the next time someone says “Wow you have a lot of pills!” just consider them the tools of your trade.  A plumber has a lot of tools. An accountant has a briefcase and laptop.  A football player has pads and a helmet.  You have medication and determination.


One thought on ““You have a lot of pills!”-and- How your Illness is your JOB

  1. MPettit

    Wow, kitty you have such a burden, but you keep persevering – I hug (lightly) and salute you! I will always be in your corner and would get you fries and a drink if I was with you 🙂 Love, Mikki


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