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.

 

I need a new purse….

So it would seem to most people needing a new purse is a nice thing.  I do own a few purses, some nicer ones for special occasions.  Also some bigger ones that are more for carrying water bottles and extra stuff, for car trips or flying.mrPl26tI_br6lIlwYkNK-jg

But that day to day bag most women carry is a big problem for me.

I used to carry a regular size purse.

My mother, who is under 5 feet tall, has always carried a purse about half her size.  She openly would scorn how I could carry just a normal sized purse.

 

My normal sized purse had besides the wallet and coin purse many other items.

Hairbrush (often small sized)

Face powder compact (I get shiny)

Lip gloss

Lip stick

Flashlight (these I often buy as they are given out as gifts to children that are acting up)

simple basic first aide kit (you can get those for about $1, bandaids and antiseptic)

eye glass cleaner

sun glasses in case

small tissues

water bottle

Kindle or small book

Notepad with pencil or pen

Sharpie pen

Epi Pen (A MUST)

Extra medication in bottles

coupons

Keys of all sorts

folding shopping bag

small hair spray

snack (Cliff bar or granola bar)

Mints

Gum

small tooth brush and tooth paste

extra gloves (if it is winter)

Hair tie

extra socks (if it is winter)

wet wipes

hand sanitizer

small knitting project (such as hat, to kill time)

When I complained to my RA doctor about my hands and shoulder (one side was much worse) he looked at my purse and pointed at it.

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too big and I can’t afford this designer!

THAT HAS TO GO!

So he suggested I sit down and figure out, what could perhaps just stay in my car, and what do I REALLY NEED to take in with me to a store or to the library.  What was truly necessary and what would fit in the glove box.

My first sorting went poorly, but the weight of being prepared for EVERYTHING, was causing shoulder damage.

I am now down to a small crossover purse that I found on sale, from Fossil, that is perfect.

It holds JUST what is needed.

Epi Pen (never be without it)

Handicap tag (it fits in the outside pocket and I try NOT to use a space if there is only one.  I then park near the cart return and use the cart as a walker.  But I rarely use the last space)

wallet

key

medication in small container (not the entire bottle)

Sunglasses (when needed)

Sanitizing liquid (necessary for health)

I’m amazed what else I can fit in there, even the Kindle can smoosh in for a quick doctor visit.  The flashlights and knitting and such can go in a small carry bag if I need them.  I have TWO long doctors appointments this week.  That means knitting and Kindle needed, but they aren’t needed for a trip to the grocery store.

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The problem is that it appears there are two sizes of bags.  HUGE and wee.

The Fossil bag I have owned is well designed.  Being light weight and also engineered well, it doesn’t hurt my shoulder after being carried around.  Many small bags often have so many zippers and pockets and tassels and studs or embroidery that they can weigh a lot.  Every ounce counts.  The cross fit is also a help.  If I carry a bag by my elbow I often end up hurting that joint.

This is the bag I currently own, and the temptation to buy it in the lovely maroon is SO SO SO much.  It’s a wonder of a bag in a small package.  The outside pocket is perfect for the handicap tag even though it falls out sometimes.

Mind you my DREAM BAG is the tiny Haven bag….but as  you can see from the price, HELLO, I get it is my companion everyday but did I mention a child in college? And we ALL HAVE DOCTORS BILLS!!!! (two doctors this week and an injection means more bills in the mail box)  We can dream, but reality is I’m going to be looking at TJ Maxx clearance.

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even on sale… this is a no

 

Why not get the same Fossil bag again? Because it is no longer at the sale place (TJ Maxx) and online I do put a limit on my spending.  I still have a child in college.  The reasons for purchasing this bag, despite the cost, is that it is so well designed and made. Only now, has it begun to show any signs of wear.  The leather has held up through NH winter, and been slung in and out of more cars and shopping carts and dirty floors… and finally the lining is ripping a tad also (I am tough).  Kudos to the Fossil people for making a good leather bag that is designed for USE and abuse.

The odd thing is this really isn’t a post about the need for a purse.  It’s a post about how every aspect of your life revolves around your illnesses.  I need a purse.  I can no longer just go “I like this one”.  Or “Do I pick the red or the black?”  Instead it is “will this purse  NOT hurt my joints and yet also carry the medication I need to save my life and the handicap tag?”  It seems as if EVERYTHING has to be decided by your medical needs.

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With increased medical needs, I need to carry more. But, everything is picked now based on medical needs.  Something well designed and nice to look at is plus.

Clothing.  Will this be comfortable, or will it chaff against my sensitive skin (sensitive from medication)

Shoes. Will these support my damaged joints, and if it has heels I have to WALK AWAY.

Hat. I need sun protection as my medications mean I can burn more easily.  What hat will be loose enough that if I have a medication induced headache I would scream from the pressure, but also stay on and protect me.  (also will this hat look stupid on me and why don’t more people wear hats so I don’t stick out?)

Car.  Can I get in and out, does it have a bar on it somewhere to help me pull myself OUT.

Chair. Is that chair too straight, and how will it look with pillows all over it to support my back?

House. Yes, even the house.  We moved to get a one story house because steps just aren’t going to get any easier, and while you can get a stair elevator thing, I spend so much time resting I want to be on the same floor as my family.  I felt too isolated alone in bed resting a floor away from family.

Neighborhood.  When we were looking at homes we were “is it flat enough for walking?”

I could go on and on, but I found that making a decision about a purse was no longer “Which one!” and is now “What will work.”

Meanwhile the old crossover bag is still going strong, and only in the early stages of needing replacing. So I have plenty of time to wait for something to come in my price range.

 

 

 

 

 

A Panda Present of Presence.

Lessons I Learned from “Kung Fu Panda”

By Maria Myrback

As we all know, there are good days and there are bad days. Yesterday just happened to be a good day. After an afternoon at Disney, I got to have coffee at a little Bohemian place without having to be wheeled in. So YAY! That trip to the coffee house reminded me of just how much I missed that simple pleasure of being out around people who were simply enjoying themselves. The murmur of conversation seasoned liberally with peals of laughter was soothing and it made me happier than I have been in a while.

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Yes, I said ‘wheeled in’. Last week, my husband and I came to the decision that, if we wanted to keep going to Disney on a regular basis, I would need a wheelchair that didn’t cost us $12 per visit to the parks. So, thank you Craigslist, we found a nice one with good brakes for $50. That may sound like a lot, but Ken did some research and discovered that, brand new, that same chair cost $350. Ken also found a place to get it adjusted for $35. We can’t complain. That might sound like a good day, but for me, it really wasn’t. It was pretty awful. After all, how often do you get to be reminded that your life is going to Hell and you have to buy the hand basket, yourself? Talk about adding insult to injury.

So, of course, I had guilt. I felt guilty because my husband has to push me around in this ugly contraption. I felt guilty because we had to actually spend money on this thing. I felt guilty because, once more, I failed to get better despite money we spent on medications and the fact that I had to spend money to get medical insurance. I felt guilty because, if I don’t take the costly medications, I have a 60% chance of dying if I go into status epilepticus. I have guilt because if I die, my husband will probably drink himself to death.

I know at this point you’re wondering what the title of the article has to do with anything I’m writing. Don’t worry. We’re getting there.

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Ken has been working to find a good price for the new medication my neurologist wants me to try. Vimpat is $625 for a one-month supply here in the US. It’s $83 for 100 pills from Canada, but it could take as long as three weeks to get the meds here. Which means that there is every chance that I could go into nonconvulsive status epilepticus (NCSE) without those meds. The conundrum there is that we have been building up the Vimpat dosage while weaning me off the old anticonvulsants so my body is relying solely on this new medication.

NCSE, or nonconvulsive status epilepticus occurs when an epileptic has a seizure that lasts more than five minutes. During that time, I could stop breathing. My heart could stop beating. Any number of things could happen to end my life. On top of that, NCSE can look like drowsiness or irritability for those of us who don’t have convulsions, so it’s pretty hard to diagnose. As if that all weren’t scary enough, NCSE has a sixty percent mortality rate.

Which brings us (Finally!) to the lessons I learned from one of my favorite animated movies, “Kung Fu Panda”. The main character, a panda named Po, is “accidentally” appointed the long-prophesized Dragon Warrior. Afterwards, the ancient tortoise, Master Oogway finds Po stuffing himself full of peaches since he eats when he is upset.

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Pandora understood, life is a balance.  The good and the bad.  The winter to appreciate the summer.  Live in the present, don’t always wait for it to be Spring or you’ll miss the beauties of winter.

Oogway tells Po one of the most insightful things I’ve heard, “You are too concerned with what was and what will be. Yesterday is history. Tomorrow is a mystery. But today is a gift. That is why they call it The Present.”

There is nothing we can do about the past. It is already gone and cannot be changed. We do not know with any certainty what will happen in the future. All we have is right here and right now. This moment.

As terrifying as the future possibilities might be, I cannot do anything to change them. I can prepare, but to constantly anticipate every possibility will only make living life more of a challenge that it already is. Like I did last night at the coffee house, I will try to live more often in the moment because to do less would be to rob myself of what time I do have left.

Unwrap your Present and enjoy it to the fullest.

Chronic Illness And You: A Guide For The Holidays By: Maria M. Myrback

By: Maria M. Myrback

This time of year is full of wonder and joy. We love the glitter of lights and decorations, the warmth of hot cocoa and spending time in front of a cheery fire.  And stress. Let’s not forget stress.

Even when we start preparation early, it’s guaranteed that there will always be a rush of things to be done at the very last minute to make the holiday just right. But here’s the problem. For those of us with chronic illness, some of that last minute prep simply isn’t going to get done. And that’s okay.

No, really. I mean that. Stop laughing.

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Sometimes simple is ENOUGH! It’s about people, not presents or how you present your home.

We all get so caught up in making the holidays perfect for everyone that we forget that family and friends won’t care if we made the Jell-O-O salad with the little marshmallows or if there are three kinds of vegetables instead of four. Or even if the gifts that need to go out in the mail get there by Christmas.

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Let’s face it, no one really needs a jello salad

I’ve been reminded time and again that our friends and family are there to spend time with US. They don’t care if there’s a dust bunny in the corner or the floor hasn’t been mopped in, well, a while. The people who love us are more compassionate with us than we are with ourselves.

Regardless of what holiday you celebrate, remember to give yourself a few gifts. The gift of compassion. The gift of kindness. The gift of self-love. Even when we were fully healthy, we couldn’t do everything, so why are we still expecting the same things from ourselves? It’s okay.

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If they are out of hide a cat for your tree, no one will notice! 

 

It’s okay to relax and enjoy the time with your friends and family. It’s okay to have a house that looks lived in. No one expects a showplace. It’s okay to not have that dish that only Aunt Betty likes. She’ll understand.

Maybe it’s time for us to understand too.

We can’t always do this for ourselves. So, dear Reader, my gift to you for this holiday season, is permission to give yourself compassion. To give yourself kindness and to give yourself love.

Happy Holidays and may the New Year bring us all something better.

 

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.

paintone
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.

Feeling Guilty, The Crime of Chronic Illness

Special thanks to Eric and Maria, Eric for sharing his wonderful roller derby photographs which I feel illustrates the toughness of those living with chronic illness.

Guilt And Chronic Illness

Maria Myrback

I know that having chronic illness is not my fault. It’s something that happens to millions of people, and yet, sometimes I find myself tripped up by crushing guilt. For the past two months I have been dealing with the side effects of my seizure medication while we steadily increase my dosage. The nausea, skull-splitting headaches and fatigue have been debilitating to the point where I don’t leave my bed unless I absolutely have to.

Out of the game... being down is hard to take.
Out of the game… being down is hard to take.

Even staying here, I spend much of my time sleeping, so I can’t even function well enough to be there on Facebook when my friends need me. That’s part of the guilt. Over the past months, I have watched while people I care about have dealt with death and been unable to be there to share their sorrows. I have watched as people I love have been mentally and physically traumatized, and all I can do is send what feels like trite messages, rather than grabbing my baseball bat and bashing heads the way I wish I could. I have stood by and watched while friends have dealt with surgeries and broken bones and all I could do is offer messages instead of going over to help out or make food to take over. And knowing that I cannot help those I love hurts desperately. But all I can do is lay here and relate to Zeus’s pain when Athena was born from his skull.

Everything is tough... for everyone on our team
Everything is tough… for everyone on our team

The other part of my guilt stems from knowing that I am keeping my husband from doing things he loves outside of the house. No, I am not refusing to let him go places. But he feels the need to stay with me and take care of me, which makes the guilt even worse. I’ve tried to get him to go to Disney but he doesn’t want to leave town without me and I can’t deal with the heat and the crowds right now. Not to mention the nearly ever-present nausea and headache tends to put a kibosh on entertainment plans.

We want to stand on our own....and we'll get there!
We want to stand on our own….and we’ll get there!

Chronic illness doesn’t just affect your health. It affects practically every aspect of daily life. It affects your family, too. I have been reminded by my eldest son that I am “not a burden, you’re my Mom.” but it doesn’t feel that way. I can’t help my friends, I infringe on the plans of my family, my husband has become my caretaker and I feel awful about all of it.

We don't want to hold anyone back, it's hard to be looking on though while everyone else seems to be in the game.
We don’t want to hold anyone back, it’s hard to be looking on though while everyone else seems to be in the game.

So if I can’t be there for you right now, that doesn’t mean that my heart isn’t breaking for you. It doesn’t mean that I don’t care. I always care what is happening to my friends. It just hurts that I can’t do what I truly want to do for you, so I have guilt.

I keep holding on to the idea that eventually it will get better. I’ll adapt, or we’ll try a new medication and the carousel will begin again. Since I’m still new to my chronic illness, I am trying very hard not to give up on my dreams, but the reality is that I may not ever accomplish my goal of being a biologist. So I live through you. My friends who are scientists. My friends who are artists. My friends who are simply sharing your lives with me. I wish more than you can possibly know that I could be there in person to share your sorrows as well as your joys. But I can’t. As with every person with a chronic illness, I have to take care of me right now. But that doesn’t mean that I’m not feeling for you. I’m still here. I still care even if I can’t be there in person.

****I can’t thank Maria enough for expressing how we all feel at times. I know the guilt I feel that my husband is now also my caretaker.  This is not what either of us signed up for, and the guilt can be overwhelming.  Also, knowing Maria, she would be the first person to step up if anyone is hurting or going through a tough time.  The inability to help, which is almost instinctive in people like Maria, is truly the worst part of having a chronic illness.  I know Maria will soon be feeling better, but also that adjusting to a new medication can be physically and mentally very fought.  Many people simply can’t deal with it, and my own doctor commented that we forget how truly tough and brave a person has to be to deal with a chronic illness.  Medicine is still very primitive in many ways.  Pain is something many of us live with, and as a once very healthy person I am shocked at the level of pain so many have to deal with. I had always assumed “You get some pills.” or “There is a shot for this right?”  No, a lot of what medical professionals have to give us is simply “Just deal with it, we’re sorry.”   Thank you again Maria.  I agree with your family though, you are very special, and I hope soon you are back at Disney with Ken.  It’s OK, you are worth waiting for no matter how long it takes.****Kitty