Flying Lessons

We all find inspirations that help us make it through our chronic illnesses.

Sometimes that inspiration can be another person suffering through their own chronic illness.

First off, let’s admit the “Someone else has it far worse off than you do.” comment never makes anyone feel better.

In fact what happens is just the opposite.  You feel GUILT.

Let’s not even bother taking a poll here to agree, we real dislike the “I am always cheerful and happy” bloggers and you tubers out there with chronic illnesses.  Don’t even get us started on the “I gave up gluten and now I’m FINE.” people.

We all find people to inspire us and that we come to admire for having ,what my grandmother called, “Grace under pressure.”  They are real people, dealing with illness everyday, and they help inspire us to “keep going.”  They cry. They are afraid. They pick themselves up one more time than they fall down.  They find joy in today, as there might not be a tomorrow.

One of my biggest inspirations is a You Tube family know as “The Frey Life.”

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Peter, Ollie and Mary

Yes, they are religious, but I would never put anyone down for using religion to help them through a terrible illness. Many of my readers I know are Atheists, but also sometimes forget, many of us use our faith to help us through tough times. Faith is something that does help me along my chronic illness journey.

The thing I admire about the Frey family (husband Peter, wife Mary and service dog Ollie), is that while they have FAITH, they also believe in modern medicine.  They don’t expect God to cure Mary of her Cystic Fibrosis.  They don’t even expect modern medicine to cure it.  But, they are at best, hoping that Mary will live for as long as possible (I hope she does too).  They educate and inform the rest of us about life with CF.

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The good news is this is no longer “A Children’s Disease”. Many patients live well into adulthood.  What we need is a cure.

It’s a tough life.  Mary devotes over 2 hours a day to self care.  She wants to keep her lungs healthy for as long as possible.  Despite the incredible medical advances, including lung transplants, most CF patients do not make it to age 40.  That’s the top end of what she is looking at.  It should be noted, I learned that a lung transplant does not cure CF.  It’s more than just lungs, and for anyone interested Mary and Peter have some great educational videos on their you tube site.

So, what do I learn from the Frey Life?  I learn things like “Don’t Forget to Laugh Everyday.” (seriously, go check out their online shop.  They do all the work themselves.)

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For today’s laugh, mom my and little brother bothering our poor cat Crystal.

Yep that’s a rule.  My worst days, when I am in bed, depressed, despondent and in severe pain….surrounded by ice packed joints and having come back from getting the dreaded steroid shot…I make a point of going on You Tube to find a funny cat video to laugh at.  Everyday.  Laugh.  They remind their viewers to do this, and it is pretty darn good advice.

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….and then a helicopter landed.

However, one of the best lessons I learned from Mary was from a recent video.  CF patients go to the hospital a lot, and Mary was again in the hospital.  Peter is out walking Ollie her service dog, and Mary was alone.

Mary was sad.  Her port, which allows the hospital to deliver medication easily, was hurting her.  It was scary.  Replacing the port is an operation, and you could watch Mary’s fears and thoughts overtaking her ability to deal with the reality of life with CF.

We all have been in this spot.  The “I am tired of being ill and constantly having to worry about what’s going to be needed next.”  The endless visits to physicians,  hospital stays, the medication juggling, and the plain old fear.  Mary cried.

Then at that moment, she looked out the window of her hospital room and saw a life flight helicopter landing.  She turned to the camera, her tears stopped, and said “Today is the worst day of someone’s life.”  The timing was sadly perfect.

In that moment, she remembered, life is very hard for all of us.  That while she was afraid of her potential port surgery, and I think also just overwhelmed by her situation, she took a moment to reflect, “It’s not just me.”  Someone was right there having the “worst day of their life.”

One great thing about this blog is that it reminds me, we are not alone.

Everyone is struggling.

Our condition is not just tough on us, it’s tough on our families and friends.  But, we always have to remember, life is tough.  There is no real “normal”.  The older I get the more I learn, everyone has something in their life they are dealing with.  In fact, if you only have ONE THING that you are dealing with, that’s an exceptionally lucky life.

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It’s not just the lungs, something I learned….

Mary is a happy person.  She has a fabulous support system with Peter and Ollie.  She has a CF support team that seems considerate and on top of things.  She also has chosen to share her CF life with others, so that she can help educate us about CF.  But perhaps what she didn’t intend was showing us her own education.

Listening to Mary and Peter, you see their growth.  They will sometimes say “We didn’t know this.”

You see a very young couple dealing with a very serious disease.  They are learning together.  I know my husband and I work as a team, sometimes poorly it should be noted, to deal with the pressures that come not only from my own illness but that of our disabled daughter.  It’s better with a family, but in some ways is also harder.  Communication is the key.  What can I do to help you?  What is “too much” and what is “too little”?  How much can I handle and when do I need to admit I can’t handle things?

By watching the Frey family, I learn what they learn.

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Breathing is a blessing.

But the lesson of the helicopter (as I call it) has been one of the best lessons yet.

When I am in the depth of despair, I have to remember “Someone is having the worst day of their life.”

It doesn’t make my day better, but in a way, it reminds us that everyone else isn’t walking around having these amazingly normal lives.  Also, at any moment, anyone’s life can change.  It can be for the better or for the worse.  But there is only one thing in life that is certain, uncertainty.

Also, the helicopter lesson reminded me how wonderful we are as a species.

We spend huge amounts of money to help take care of each other.  This doesn’t make sense from an economic standpoint.  One could say that the hospital makes money and the helicopter pilot makes money, and certainly the drug companies make money.  But, the effort we have chosen as a society to help those needing care stay alive comforting to me.

I thought, watching the helicopter land “These people, flying that helicopter,  caring for the patient, everyone at the hospital, the nurses, the doctors, the technicians, everyone chose to go into health care.”  These people were inspired, most not by money, to study and educate themselves in a profession where they help others.  My GP doctor jokes “Every doctor has a batting average of zero.”  Medical care is not always the most uplifting of professions.  People suffer, they are in pain, they die.  People still chose to do this for a profession.

 

Mary does her hard work, the PT and the vibrating vest and the medications are a full time job.  Peter does his part, supporting her but also letting her cough and not asking “are you OK?”.  He is wonderful as he carries on as if “this is normal”. It is normal life for them.  Mary’s never made to feel like a “sick person”.  Instead she is a “person with CF.”

I love how Peter often just gives a shrug and says “This is life with CF.”

It’s not “This is life with someone that is really sick, and things are not normal at all, it’s just SO DIFFERENT.”  No, he’s just “This is LIFE.”

One criticism is that Peter seems to ignore Mary when she is having a coughing fit.  He is not ignoring her.  That’s just “life with CF.” He will sometimes pat her shoulder, but mainly he is there. He never treats her like she is a SICK PERSON.  That’s one good lesson for anyone caregiving for someone with a chronic illness.  Don’t act like life is “not normal”.  This is normal for someone with a chronic illness.  No one wants to feel like a patient all the time.

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Always take a moment to look UP.  It’s a wonderful sky out there.

So, yes they are showing mainly the upbeat times.  But since the videos are daily, you get a real picture of life with CF.  Warts and all.  Plus, you admire how a young couple, obviously without much money, works hard to make do with less.  They find such happiness in sunsets, that I started keeping my eye out for “beautiful skies.”  I now take a moment to look at the sky.  It’s just a moment, but it’s a moment of happiness I did not have before.

Thank you Mary, Peter and Ollie.

 

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Prince didn’t die from Opiate Use

Many of us suffering from chronic illnesses are heartbroken over the death of Prince.  Most of us are fans of his music, others also love his ascetic and the mystic of the man that choose to live in Minnesota, not Hollywood.

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But most of us are heartbroken as we depend on opiates to help us stay pain free.  Because we know Prince didn’t die of opiate use, he died from breaking the law.  He died from opiate mis use, which is a crime.

The criminals are keeping so many of us from being able to easily get a drug that we have used safely for years.  In my case, I’ve had almost 10 years of opiate use to get me through pain that otherwise would keep me bed bound.  Others that take opiates are in end stage cancer, and it is the only thing that works, allowing them more time to enjoy their families and even travel a bit and do those things they love so much.

587c5f9cc5924bcad26cb13014ddd970People with severe arthritis and chronic illnesses in the past were confined to lives of horrific pain.  The drugs used to treat in the past, were often also opiates.  An older doctor friend said that “They worked well, before morphine and other pain killers, those wounded on the battlefield were doomed to  often die of shock from their injuries before we could get them to a hospital.”  Opiates help countless others recover from surgeries, that before modern use of opiates would mean the surgery could be successful, but the pain control not, and shock would set in.

 

When I had a severe case of diverticulitis, the pain was so horrible that in the hospital I cried in pain for two days, unable to even watch TV or read a book.  The staff assured me I was getting as much pain killer as I could, and that soon the antibiotics would work.  This meant I could have the surgery that would save my life later when my intestines were not suffering from an extreme infection.  While I was in pain, I was also comforted knowing that I was undergoing a very dangerous surgery under much more safer circumstances without the infection.  The only thing allowing the delay were the extreme pain medications.

So, what about those of us that take opiates?

Well today opiate use is under attack by law enforcement and various states.  They see this as an epidemic.  They also blame doctors.  They are “overwhelmed”, or should I say understaffed and undertrained.  The same police that shoot someone as an over reaction to their fears of being hurt, are the same people claiming the only cure for this epidemic is strict enforcement of laws designed to make it harder to get these drugs.

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the expression of pain is one many of us would have to live with, as  long as we could “take it” without good pain killers.  All of which have dangers and side effects.  The choice though is clear for those in chronic pain.  Those that abuse should not punish those that use these drugs properly, nor the doctors that know how to prescribe them safely.  

 

Sadly the only people being punished are those that really need these drugs to function. One friend told me that she saw her grandmother only in bed, since her arthritis had no good treatment.  Eventually she said her grandmother simply stopped eating, a slow and miserable form of suicide.  No one in the family encouraged her to eat, as they knew her level of pain was horrific.  There were no “home remedies”, those snake oil medicines that were mostly cocaine or morphine, there were just doctors that knew some forms of arthritis were a curse, as feared in those days as getting cancer.

So, how are opiates different today?

Well for one thing doctors, not the police, have taken great steps in solving this opiate crisis.  My opiates come in a safe long release form.  That means, I can’t get a punch from it.  Over 12 hours it is slowly released into my system.  I feel the pain ease away, and it takes about 20-30 minutes before I can even walk in the mornings.  I keep the medications by my bed, ready to be taken.  What happens if I take two? I would suppose I get a bit more of a buzz, but it’s still super low release.

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My grandmother trained as a nurse in the 1920’s, she saw the major developments of antibiotics and also safer pain medications during her career. Also the study of addiction started, and the need for carefully following a patient on an opiate (or any medication) was well known to her. Her first jobs were during prohibition as a private nurse helping alcoholics that were using  very unsafe substitutes for formerly legal liquors.

Still, what if someone steals my tablets?  They will be very unhappy as they won’t get much of a punch.  In fact the slow release has little chance of addition.  Also crushing the tablets to snort (which is a favorite method for a quick high) won’t work with these pills.  There is an additive that means if crushed, cut or broken, the opiate won’t work at all.  These new pills, developed to help those with a long term pain need not become addicts, is never mentioned by the media.

My own doctors are appalled at the law enforcement/political plans to deal with this “crisis”.  They feel left out of the process.  As it is, laws have been passed that I can only refill my prescription on the day it runs out.  I have to be out of drugs before I can refill.  This often means if there is a snow storm or some other reason I can’t get out, I can’t get my drugs.  This also means I can’t drop one or lose one.  I dropped one the other day, and ended up having a friend over to tear apart the room with me (I can’t bend over well) to find it, where it was found having rolled under the bed and into a dust bunny.  My friend was “throw this out, it’s all dirty.” I was “I have to take it.”

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Let’s make this as hard as possible…..not for the criminals of course, for the people not breaking any laws.

 

Next up are the laws that say you have to have a paper prescription.  So you time everything correctly.  Each month I have to go get a paper copy of the prescription from my physician who has never had one problem with her patients and opiates.  None.  But this applies to all doctors.  Instead of going after the criminal doctors, and they are out there selling everything, not just opiates, the police have decided all doctors are guilty.  So, often I am driving, or most often someone that can still drive well, to pick up the paper prescription.

A horrible situation arose when I had my prescription ready to go on a Friday, and found my physician had forgotten to sign it.  It didn’t matter that for years I have gone to this same pharmacy and filled this same prescription, I had to have a real signature.  The doctor had simply forgotten.  Her office was closing in 15 minutes.  I could not physically drive there and back (her office is about 30 minutes away).  She was leaving for the weekend to see her child at college.  A fax was no good.  This had to be a physical signature.

Finally, after much calling and “I know this law is so stupid”, the head pharmacist and

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… adding hoops to jump through won’t make the problem of drug addiction go away.

someone at the company that owns the pharmacy, took pity on me.  They knew me, by first name, they knew this doctor had NO issues or problems.  She promised to send one over via mail overnight, but for that night, I could have one pill.  One pill.  Everyone involved knew this was ridiculous, but they didn’t want me to have to spend the night in pain or as would probably happen, having to check into the hospital.

Massachusetts tried to pass a law where anyone on opiates had to go to the pharmacy every 3 days for a refill.  Now when I put in my prescription, I have to show ID.  I have shown ID being driven by my husband or a family member, while in my pajamas and robe and surrounded by pillows, because if I am flaring, I should be in bed,not in a car at the pharmacy drive through.

My own doctor was livid about this, wondering how end stage cancer patients would enjoy spending their little remaining time driving between their doctors office picking up a paper copy, and then sitting waiting for their pills at the pharmacy.  She said “Patients with real needs that had never abused their opiates would spend all their time going back and forth.”  You have to show up in person, no matter what your condition, but once a month I can do.  Every three days, that’s impossible.  But the police and law enforcement were all in favor of this.

That’s the problem, because Prince was given opiates for his hip problem.  But the opiates did not kill him.  He died as he had people that helped him abuse the drug.  If it weren’t opiates, it might have been something else.  People say “I was addicted.” No, as with many drugs, opiates are hard to get off of right away, and you ease off with the help of your physician when the time is right.  Just try not taking, cold turkey, almost any medication. It’s tough.  I know someone trying to get off of her Paxil as she read it can cause dementia later in life.  She tried to quit “cold turkey” and was a complete mess.  She had to be eased off of it, and another drug which she hopes is safer, introduced.

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We have things to do, that do not include waiting around the pharmacy

What killed Prince were his friends and others that got him those opiates.  Perhaps he had his staff claim they were in pain and needed short term opiates.  These will give you quite the buzz.  Money can buy a lot of things. Including doctors that will sell you about anything, including Ritalin to snort.  No one is saying “let’s stop using Ritalin.”  Paxil does indeed seem to cause an increase in your risk of dementia, as does Tylenol.  No one is calling for those to be more regulated.  Indeed, one of the most dangerous overdoses anyone can take is half a bottle of Tylenol.  There isn’t much that can be done for the liver damage and people that were more into scaring their family with taking an over the counter medication find themselves dead.  Mix in some alcohol and you are in for real trouble.

Yes there is an opiate crisis.  I know this as I have a handicap tag, not a license plate.  Why?  Because if you have the license plate, people will break into your home knowing you have a likelihood of having MANY drugs (not just opiates) they can sell.  Also I was asked to always use the drive through at the pharmacy.  That is because an elderly couple that got their medications locally (at the pharmacy I use) were followed by someone as they left and robbed at the post office in small Spofford Village.  Yes crime is around prescription drugs.

But there is also crime around heroin, marijuana, cocaine and other drugs.

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There will always be another drug, prohibition doesn’t work

There are also cheaper drugs just waiting to fill the void in the United States.  Currently Thailand has a inexpensive pill that helps workers put in long days.  It’s a necessity for many to make a living.  Ya Ba is sold for about $3-4 a pill.  It’s a super cheap high, first popularized by long distance truckers.  It’s spreading throughout Asia, as it’s a way to keep going even when you are exhausted.  It also is a way to party and have a social life after a long day of work.  Once this pill invades the US, it will make opiates look like a joke.

The problem isn’t that doctors are prescribing this, it’s that many people do have an addictive personality and also have the money and means to get more of this drug.  When they are taken off the medication, not slowly and carefully, they often turn to heroin on the street as it’s the closest they can get. It should be noted prescription opiates are not heroin.  Also stolen opiates are often crushed and injected, they are not at all what the person legally taking these drugs is experiencing.  If anything, doctors need to know their patients, and also make sure that there is proper care with withdraw from the drug.

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Even Sherlock Holmes used it, but Doctor Watson wasn’t overly concerned in the Conan Doyle stories. It was more like “you are drinking a bit too much old boy.” Today’s physician is more careful and involved with long term opiate patients.

When celebrities like Jamie Lee Curtis claim they were “addicted” to opiates after a surgery, what they mean is “I had a really hard time getting off of it, as I possibly would with any medication that is very strong.”  She was not on the streets seeking a high from heroin.  Anyone that has suffered from Depression, as many with chronic illnesses have, knows that the switching of medications to determine the correct medication for treatment can be torturous.  It’s not just opiates that are difficult to do without.

But, politicians and law enforcement, they see all use of opiates as dangerous.  The punishment falls on those least able to follow these new restrictions and rules.  They don’t consult with physicians and surgeons and hospitals about all the good these medications do for so many, who do not abuse the drug.  There are no good alternatives for many of these medications.  Punishing the patient is not the answer.  Punishing the physician who has to tell the patient, “I have to use this other painkiller that does cause terrible stomach pain, I’m sorry.”  What they will do with patients after surgery is not known.

It’s easier for someone to buy and abuse liquor, and indeed we rarely read about the epidemic of alcoholism, than to get opiates.  If you are Prince and you have friends and money, you can get this drug.  But the drug itself did not kill him.  His dependence and unwillingness to find treatment, did.  It could have been alcohol.  It could have been cocaine.  It could have been Ya Ba.  As long as there are substances that can alter our physical state, they will be used for both good and bad.

Prohibition did not work.  States are figuring out that decriminalizing marijuana is a good idea.  Even making it legal seems to be working well for Colorado.  California has it so you can sneeze and get the medical use license.

Opiates are the drug du jour.  They do a lot of good, and yes have cause a lot of harm for some that have abused them.  Overall, imagine war without opiates, hospitals without an opiate choice for those in severe pain, and opiates off the list for people at the end stage of their illness.  Pass laws and more restrictions and those that still want it will find it.  Those that legally use it and need it, will just suffer in pain with inferior medications, or end up trapped in bed and suicides will jump.

If physicians and doctor, those ones that deal with patients everyday, were included in this

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I know more than you doctor! Why would I ask their opinion on this? Solve a problem by shooting it or banning it!

“war on opiates” lawmakers and law enforcement might learn there is a lot that the medical community has already done to make opiates safer.  Long term slow release is a comfort to me, knowing I can get the medication I need and have small chance of addition.  While getting off these medications may be part of my future if a better treatment is found for my condition, and much surgery done to correct the damage already done, I may be off these drugs.  I would like nothing more than to be able to live drug free.  But that is not a reality for many of us.

The thought that politicians and not physicians, will be the ones deciding if I live a life of pain, or one of controlled comfort, is one that terrifies me.

 

 

Are My Pills Making Me Sick?

When I was first diagnosed with Hashimoto Tyroiditis disease I was prescribed medication to take everyday.  Before that diagnosis, I only pill I took daily was a vitamin D tablet in the winter.  Here in New England, almost everyone is diagnosed with low D during the winter months.

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No one gets enough vitamin D in winter!

Now I look at my vast array of medications and wonder “All these can’t be good for me!”  I have since had a diagnosis of two types of arthritis (one can make you blind overnight!) and Type Two Diabetes (medication induced).  The amber bottles of pills keep growing.

My medications a combination of drugs to battle the chronic illnesses, and drugs to combat the drugs that combat the chronic illnesses.

Side effects need their own drugs it seems, but these drugs also have side effects.

So, if you are like me you have more than once thought “I wonder if these medications are making me feel ill?  Maybe it’s not the disease, maybe it’s the medications!”  Less is more is my thought, and my insides make horrible noises most of the day in rebellion against the medical onslaught.  This just doesn’t seem right, or even good for me.

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A lot of bottles can un bottle some commentary.

I decided that the one doctor I trust the most and I needed to have a little talk.  So, I took a list of my medications, and asked her “Why am I taking each of these? Are there any I can cut out, or work toward cutting out?”

It was a very good conversation.

First off, I wasn’t taking many of my medications in the optimal way.  My thyroid medication is a bitch, I need to take it on an empty stomach.  Problem is the other medications need to be taken with food.  My solution was waking at 2am and just taking them.  The problem is, they work best if taken on an empty stomach with a glass of water. Not a sip of water in the middle of the night.

We talked and came up with a solution. I now take the pills first thing in the morning with a water bottle I keep by the bed.  Then I wait 20 minutes and take my arthritis medications.  I’ve noticed a difference in how I feel throughout the day.

My doctor also went over timing for my other medications, what I should drink and eat (I wasn’t nearly drinking enough for many of them).  She reminded me,  I have a more than one serious illness.  Several, as most people with an immune disease, have more than one serious illness.

 

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Timing is important with medication

Some of my medications are common for people my age.  The statin is needed as my family has unusually high cholesterol.  We just do. Even the vegan weird hippy cousin, she’s delightful, but she’s on a statin.

Also going over my side effects with her was very important. Side effects can be very dangerous, and she suggested a new pill to help with my stomach complaint.

Did I get to drop any of my medications? No. I’m still not happy about the number of medications.  But, as she reminds me over and over “You have several very serious illnesses.”  People with serious illnesses take a lot of medication.  Just because it’s an “invisible illness”, meaning I look fine, doesn’t mean it isn’t truly dangerous.

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It takes a blood pressure cuff to measure blood pressure, trust it

I have a friend that complains her husband refuses to take his blood pressure medications.  She is upset, but not enough to really make sure he takes them. She jokes “If he has a heart attack it will be his fault!”

He’s proud he doesn’t “take pills”, he says he feels great.   He’s thin, he rides his bike, and he “eats right”.  The blood pressure cuff of course doesn’t know any of that.

It’s hard when you don’t LOOK sick, but I imagine it’s even harder when you don’t FEEL sick, to take your medications.

But, while I am still unhappy about the number of medications I take, and I want to cut down, I’m happy I did speak to my physician about each and every one.

Ask:

WHY am I taking this

WHAT does it do

WHICH side effects do I have (and how can we treat them?)

WHEN can I stop taking this (maybe never?)

WHATEVER can I do to perhaps get off this medication?

and

HOW do I take this medication to get the most out of it

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Don’t forget the side effects or alternative medications!

Also, if you are having a problem with one medication (and how to figure out which one can be hard), see if there is an alternative you can try.  There usually is and often you are much happier with that alternative!

PILLOW FORTS! and other pain tricks

I am having  a horrific arthritis flare. I awoke at 3am with every joint screaming at me.  I reached down to touch the fiery knees and knew, surprise flare attack!

The day before had been especially good, this is the trap.  I had overdone it a bit, but also with most chronic illnesses you just never know when it’s going to go from a 3 on the pain scale to an 11.  It might have been something you’ve done, or it might just be arthritis reminding you it’s a bitch.  Either way, dealing with the pain peaks is impossible.

It’s impossible, but of course we do deal with it.

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My pillow fort can be even more complex than this one.

One trick, is the pillow fort.  Most people with joint pain have a pillow fort plan.  There is no one mattress that can support all our aching joints, no matter what the TV ad says.  Instead we use pillows.  This one supports a leg, this one cushions a hip, this one supports your neck, this one is just flat enough for your head.  You don’t want your head pillow to be too fluffy or your neck joint will hurt.

I have a specially shaped pillow that can go between my knees for extra support and to keep the joints straight.  It’s very helpful most nights.

Still, pillow forts no matter how comfortably built are just built of fluff, and tend to move around as you move around.  The protective pillow fortress needs to be rebuilt often during the night.

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I wonder if there are enough geese for all the down I need to support sleep?

A flare means, nothing is going to help your pain.

You get kind of desperate.

Some drink a tad.

That’s fine.

Period.

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Need MORE geese!

I don’t, because I have a genetically fragile liver.  Thanks relatives that mated and gave me this!  My one daughter also has it so I apologize to her.

However, I am not supposed to take Aleve, it’s bad for the liver, but it does help with the joint pain.

When you are awoken by pain and you can’t even imagine how you are going to survive it, and you’ve tried the ice packs and heating pads and pillow forts galore… you do what it takes.  For me that means sometimes taking an Aleve and offering an apology to my liver.  Fingers crossed, but I’m thinking about living through the next few hours not the next 20 years.

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it’s kind of lonely as no one else can really help

Some use medical marijuana.  This is not available where I live (legally) and since I refuse to take it in anything but gummy bear form (it comes that way) I just suffer. But at 5 am after having been awaken at 3am, I would eat some gummy bears.  Recent studies show it doesn’t hurt your liver!

Right now I am looking at this being a record flare, possibly lasting 24 hours.  I’m going to one of my doctors tomorrow where we will certainly TALK ABOUT THIS!

Meanwhile I’m planning a super deluxe pillow fort and hoping for some sleep tonight.  Finger crossed, and Aleve taken, it’s often whatever gets you through the night.

It’s all about the Mashed Potatoes

Last night I went to sleep, “baaaa humbug!” I said as I was exhausted from wrapping gifts to be sent off to family.  There was a sense of Christmas gloom and guilt, perhaps instead of being rushed to get family gifts in the mail I should be planning instead to visit family in person.  Sure with my arthritis and new medications travel is  not easy nor advised, but Christmas is about family. Right?  I wearily fell asleep mumbling about “Plane tickets, maybe drive, it won’t snow right…zzzzz”

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The ghosts show what you don’t want to see….

Suddenly there appeared a GHOST, it my old friend Marley that had died of her chronic illness not long ago.  She was wrapped in chains, which dragged as she hobbled across the floor.  I said, “So, you are still hobbling even after death?  That’s a bummer, as I know your MS made you have problems walking when you were alive!”

Marley grumbled and pulled on her chains.  “No, I can walk fine, but these chains are the chains of anger and frustration, I must pay for my sins in this world before I can devoid myself of the chains!”  I couldn’t imagine what sins Marley was guilty of, she had dealt with her MS with courage, humor and always supported her chronically ill friends with empathy and love.  What could possibly have happened?

Marley looked glum and said “I want to save you from the chains I have to wear, by warning you to heed the three visitors you will have tonight!  Three ghosts will come to show you what has been, what is, and what might be.  Only then can you be saved from my fate!”  I assured Marley that she was only the holiday pudding I had eaten (let’s face it, pain killers give you a tummy ache), but even though she was only heartburn I wished her well in the afterlife.

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With thanks to Dickens for the inspiration for this mostly fictional blog post.

 

I then fell fast asleep to be awoken then by a jolly roly poly old physician.  He was smoking a pipe and said, “I am the doctor of Christmas dinners past!” I gave him a poke in the belly and he said “Yes I am the doctor of times long ago when doctors could be fat and smoke cigarettes, sometimes right in our office!”

He said, “Come with me and I will take you on a trip to Christmas family dinner of the past!”  He then took my hand, and I took my cane because even though we were apparently going to fly out my window I knew I’d need it if any walking were involved.

We flew out over the snow topped houses and back into history, where we landed at a holiday dinner of long ago.  It was at the Naval Academy where my husband had gone to school.  We were in a room full of young men in uniforms.They were happily eating turkey, dressing, green beans and rolls.  Next to a very handsome young midshipman was a young woman in a bright blue dress with too much trim.  I recognized myself, wearing a Laura Ashley dress.  I said “I can’t believe I had that hair, you know Doctor of Christmas past that hair took me 2 hours to curl!”

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Baby it’s cold outside at the Academy!

I then started trying to rearrange my large hair of Christmas past, really it was just too big and all that hair spray showed I had not heard of global warming yet.  The Doctor of Christmas past said “Listen, stop and listen!”

The young midshipman turned to the young me and said “I’m so glad you were able to be here for my holiday dinner.  I’m not able to go home, as my family has plans. I was going to be all alone this year, except for you.  This is the best holiday dinner ever.  I’ll never forget this. I love you.”  Obviously I had forgotten, but still young me was “That’s alright, it can get really stressful at my parents.  They are divorcing and it’s all bickering and everyone telling you how to live your life.  This is a lot nicer.  We are just enjoying each other’s company!  I love you too!”

At this the scene became foggy and I found myself back in my bed.  Had it all just been a dream?  I thought back to that early first Christmas with my husband to be.  We found we had so much in common.  Pie, we both loved pie.  Stuffing, we liked chunky bits of celery in it.  We both liked gravy on our mashed potatoes more than butter alone.  We knew what Christmas dinner was really about, food.

Then I fell back asleep only to awaken to a thinner ghost with curly hair.  It was my own current doctor, Dr. Metsch!  Dr.M was “Hello, I know we met only a week ago for your check up, and say how is that new medication working… no don’t tell me or I’ll have to charge you.  This isn’t an office visit, this is off hours volunteer work.  I’m here to show you Christmas dinner of the present!”  I told Dr.M I was impressed as she was Jewish ,but she pointed out that nowadays even Jews could serve in ghostly holiday dreams.

Next thing I knew were were flying over the mountains and tree tops to my mothers home.  Seated at the table were my brothers, my step dad and my uncle and his wife and family.  I was also seated there with my husband.  There was turkey, stuffing and my step fathers fantastic superb and probably potentially deadly mashed potatoes.  He promises to share the secret before the potatoes kill him.  Let’s just say I’ve noticed containers of heavy cream and real butter in the fridge before he makes them.  My husband was turning to me and talking about the potatoes.  I was agreeing with him about how wonderful they were.  We were talking about food, as we did long ago at our first dinner.

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Nope, this kind of weight is not going to get a pass at the family dinner!

Then, it began.  My mother asked my uncle if he had any luck with losing weight, and how it just took will power.  My mother pointed out how she was still as thin as she ever was, and that will power was all it took.  Then she turned to me, pointing out that I was the ONLY fat child.  I did point out, “You know I have to take steroids for my chronic illness, I do try to be careful about my weight, but…”

My uncle is then warned by another family member about his diabetes.  Dream me is about to make a big mistake, and even I can’t stop me.  I admit to my family that I am now diabetic because of the medications I take to treat my illnesses.  I have to take medication now to deal with this deadly side effect.  I say this as I have a spoonful of mashed potatoes and gravy halfway to my mouth.

Pandemonium ensues.  Suggestions are offered about how I should deal with my illnesses.  Everything from going vegan (from a sister in law who is and has “never been sick a day since I went vegan”) to a cousin (“It’s all those medications you take, the side effects are more dangerous than your illnesses!”) to my aunt (“no one has ever had diabetes before in our family, well except your uncle!”).  At this point I know if I put that spoon of mashed potato in my mouth I will be in even bigger trouble than I am now.

Assurances that I have done well on my new medication and that I have the ability to check my blood glucose level is not heard.  Who need google to look things up when you have my family?  It’s all done “out of love”, but I wonder, “do they not think I have very expensive well trained doctors that can advise me?”  To my horror, dream me has spoken these words out loud.  It  becomes a battle.

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Family dinners, you can feel attacked! DANGER DANGER!

Memories of all the times I have been “careless”, and even  the reminder once again, “No one ever had arthritis that I know of, except grandmother and her sister and those two cousins… so obviously it’s something she’s DONE.” My blessedly healthy and strong family is in full force attack, telling me how to cure everything wrong with me (except my Uncle, who is longingly looking at the mashed potatoes also, and we were honestly only going to have a small portion in keeping with the recommendation of our physicians).

I feel ugly, fat and guilty.  Maybe it is something I have done.  Everyone else is so healthy, I understand from my physicians and google that the immune response diseases I have are genetic in origin.  I see my cousin getting ready to suggest again maybe the wrong baby was brought home from the hospital.

I awake shaking.  I’m now terrified of what the Christmas ghost of future dinners has for me.  However when the ghost appears it is only my dear friend Marly, only this time she has no chains fettering her.

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Sometimes alone isn’t so bad, if you have warm memories. (thank you Andrew Merritt for the photograph)

She holds out her hands and smiles.  “The chains were the guilt and misery my family inflicted on me every holiday.  Instead of enjoying each others company, they would take it as a time to complain and try to fix my problems.  They also picked on my sister who still lives with MS.  Instead of a dinner with love and respect, it became something that left me weak and broken.  Our families love us, they are concerned for us, but sadly instead of realizing that life is short for all of us, they try to fix us.  They don’t try to understand what we are going through, the very effort to sit at a table can cause pain.  Travel also take much planning and is scary. Instead of appreciating our sacrifice to be with them, they tell us the latest medical cure from Dr.OZ.  Instead of praising us for what we do accomplish, like getting out of bed and facing another day with pain and complications, they don’t understand why we don’t do MORE.  We are unable to enjoy ourselves, because they are unable to accept us as we are.  Sometimes love means just being together and enjoying the mashed potatoes, in moderation of course.”

I saw then my husband, eating Christmas dinner alone.  He was in our small house, that he had gone to such trouble to save up for so I could live on one floor.  I remember him painting the rooms, working overtime for the renovations, and pushing me around in my wheelchair.  He was eating turkey and mashed potatoes.  There was a smile on his face, as if he were remembering that first Christmas dinner we had together.  He had never lost his happy memories of that time, when it was just the two of us.

I then awoke.

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Home is for making memories….and yes we’ll see the family later on!

I put aside plans to drive hours upon hours through possible snow storms to be with family.  I put aside thoughts of spending money on plane tickets and maneuvering my wheel chair through airports.  I gave up trying to plan an extra steroid shot so I could stand sitting upright for hours in travel without extreme pain.

I leaned over to kiss my husband where he was sleeping by my side.  He awoke and I said “How about we just have Christmas here, just the two of us.  Let’s make some happy memories!”  His face lit up with a huge smile. I hugged him and said “Maybe my step dad will give us his famous mashed potato recipe?  We’ll only make a little bit!”

Because Christmas dinner is about being together and enjoying food.  It’s about creating happy memories for when you aren’t there anymore.

 

Happy Holidays!

**** Please note, the above is a work of FICTION.  I do love my family, and enjoy spending time with them. Especially my wonderful brothers and incredible children!  BUT.. all of them at once, and with the fixer upers on full alert, it can be too much for when you are battling a chronic illness.  Sometimes, we just decide to “stay home”, and eat the mashed potatoes.  Which are NOT a work of fiction and do indeed exist though they are a closely guarded secret.

Perspective on a Chronic Illness (It sucks)

I like to complain to my primary physician a lot.  She sees me every 6 weeks to help me manage my chronic illnesses and coordinate all the various specialists I see.

She also helps keep things in perspective.

That perspective is not always what I want to imagine it to be.

I was complaining about having great difficulty in planning anything.  At any given day, and indeed at any moment in that day, I do not know if I will have a flare from my arthritis will pop up.  I don’t know if I will suddenly for no reason just feel totally exhausted and need a nap.  I don’t know if I’ll get a horrible headache or a dizzy spell.  A side effect from one of my many medications could just decide to really bother kick it up a notch.  I’m a total crap shoot when it comes to making plans.

My doctor just looked at me and said “Well, you know you have a very serious illness.”

Oh yeah, I forgot that.

My doctor doesn't laugh, but she does have to keep reminding me....with a smile.
My doctor doesn’t laugh, but she does have to keep reminding me….with a smile.

Normal is out for me, for a very good reason. My doctor has to remind me,  I suffer from a very serious illness.  I just like to pretend that there is some other reason for all the things I’ve had to change about my life since becoming ill.  Perhaps a new medication will help?  Maybe if I could get more sleep?  If I could manage my pain better?  There is always this deal I am working in my head that will make my life normal again.

Then I am reminded, I have a serious illness.

My doctor, who has been my primary physician for over 20 years, tells me that after the first year, most chronically ill patients begin to find the little things in life are also important.  That much joy and happiness can be found in places other than Bora Bora.  I didn’t at first believe her words of experience. I was sure at first that doing what I used to do,  was the key to happiness. I think most people newly diagnosed with a chronic illness also feel this way. Did you play tennis for hours each day before… well tennis will make you happy again!  Loved horseback riding?  Sure, you can probably show jump horses again!  Hiking in the mountains, that 5 hour hike up the mountain, as soon as you can do that again, you’ll be happy!

It’s not that what  you could do before won’t make you happy.  It’s just that it won’t be easy, and you may need to modify it greatly.  It’s going to be impossible for it to make you as happy as it did before because now you have to plan more and perhaps do less.

I love to travel. Well, it’s better to say I love to be in new places and enjoy seeing new things. No one really loves the “travel” part!

Flying is no longer just annoying, it's almost impossible.
Flying is no longer just annoying, it’s almost impossible.

However, that travel part is now a far different thing than it used to be. A plane trip requires wheelchairs in the airport.  It’s not as much fun as you might imagine. Flying in those small seats people normal complain about is horrifyingly painful to many with a chronic illness. A recent plane trip I took was accomplished only by taking painkillers that were only for use “on the plane”. In other words they would knock you out if you took them at any other time.

The compression on my spine from sitting up straight, despite the use of pillows and even a special steroid shot, is enough to make me feel faint at times. I do want to travel more in the future, but I plan to travel far less than I did in the past.  Flying now requires pain medication that makes me feel nauseous and much planning.  It is not just annoying and bothersome, the complaints we all have about flying, it’s something to be endured if possible. It’s just not going to bring me as much happiness as it did in the past.

When I complained once I returned from the trip to my physician said again “Well you have a very serious illness.” 

I’m allowed to complain, but there is a reason flying is hard.  There is a reason planning things is hard.  There is a reason sleeping is difficult and even the simple chores of living are hard work.

I have a very serious illness.

Learning new things close to home, appreciating what is around me, that's tough to accept but what's required.
Learning new things close to home, appreciating what is around me, that’s tough to accept but what’s required.

Forgetting I have that illness is not the answer.

Adapting, following difficult and sometimes complex medical directions, and taking many drugs is not the answer either.  Rather is it not the answer I want which is “feeling like I used to feel”. No, all the new routine and medication is a way of managing my illness.  A day of feeling “better” doesn’t mean I am better.  I can’t get better, better being “normal”. It’s impossible.  It’s just that part of my brain wants to believe it is possible.

 

But, the fact is, as much as I like to pretend I don’t….

I have a very serious illness

Slowing down means looking longer.
Slowing down means looking longer.

Plane travel will hurt.  Side effect from medication that helps will bother me.  I will not be able to control when I have the energy to do things, no matter how much I want to do something.  This is not going away.  Things will get better as I manage this illness with the help of my doctors, but it will not be cured.

The perspective is fairly grim and often I just refuse to accept it!

That’s when I need a visit to my doctor to remind me. This is the reality of what you have to deal with, so let’s deal with this together. Just waiting for it to go away, so life can get back to normal, is not an option.

The media likes the happy stories.  There aren’t a lot of happy stories with chronic illness.  There are a lot of brave stories.  There are a lot of stories of compassion and friendship and how good people can be when something bad happens.  Those stories are rarely told.

It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.
It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.

There also aren’t many road maps for those of us with chronic illnesses.

We all have to make our own map for this seemingly much smaller world.  We have to begin to appreciate that all we are missing, maybe isn’t all there is to life.  It’s a world perhaps viewed from a sitting position rather than a rapid pace of seeing more and more and more.  It’s a world of reflection, of appreciation, and hard work to manage our illnesses.  It’s a world of friends that get it, and family that maintain it’s “fine” even though you know it always isn’t fine for them having to take on a new role of care giver.  (If you are lucky it’s mostly fine. But you understand it’s never 100% fine for anyone in the position of caregiver).

So, I thank my personal physician for reminding me ,because of the honest relationship we’ve developed over the years….

“You have a very serious illness.”

I don’t need an excuse for not doing things I want to do.  I don’t need an excuse for wanting to travel and being unable to do so.  I don’t need an excuse for a nap, or for having to break an appointment.  I have a very serious illness.  I just have to remember that!  It’s harder to do than you would imagine!

“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.