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.

 

 

 

 

 

Roll Softly and Carry a Pointy Stick

This is the Wheel Life

By Myra Shinkman

Just a little over a year ago, I broke my right ankle, tibia and fibula. I had to have surgery to set it, wore a cast for almost 3 months, and even today, I am still in a wheelchair. These are some of my thoughts about spending this period of time looking at everybody’s bellybutton.

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WHEELCHAIR!  what to do?

It’s amazing how different the world looks from down here. When I’m outside, what may seem to you an insignificant crack in the sidewalk looks like the freaking Grand Canyon to me. Those little wheels in the front of the chair – they get stuck very easily. Actually, one of the first things I learned for going over any obstacles: big wheels first. Just like the kids’ toy. I really wish wheelchairs came with rearview mirrors. Sometimes I go backwards more often than I go forwards. Almost worse than the cracks are the slight inclines used for wheelchair ramps. I’m in a manual chair, and those ramps are hard for me to get up.

Still, I do manage to do it, but boy I wish the world were a lot flatter sometimes. I hear Nebraska’s flat – should I try moving there? Another thing I discovered being in a chair – is that people are apt to just grab the chair and push you places. Usually without asking first. Oh how I HATE that! I’m still an autonomous human being; ask my permission before you move the chair. If it helps you, consider me somewhat bionic, as in the chair and I have melded into one being. You don’t go around pushing random ambulatory people around, so don’t do it to me. Mmm’kay?

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The term, “Wheelchair Accessible,” ain’t necessarily true. Today’s case in point: my mother is in the ICU at a local hospital (she will recover), so I went to go visit her this morning. To be let into the ICU, you have to take the phone off the hook on the wall and talk to someone at the nurses’ desk to get them to buzz the door open. Despite all the ramps, etc., the phone was too high off the floor for me to reach from the wheelchair. I have to ask people to do that for me. Does this make any sense to you? No it doesn’t to me, either.

For various and sundry reasons, I am looking for another place to live. I’ve been searching on craigslist for an apartment share, and I put in the search bar the phrase “wheelchair.” There was one place that looked really great – it was to share a place with a couple of other women my age, it said it was wheelchair accessible, and it was in my price range. When I contacted them, they told me it was on the second floor. In a two-story house. Huh. How is this wheelchair accessible?

One of the weirdest things is that I’ve completely lost my ability to tell how tall people are. If you’re standing next to me, I no longer know if you are a very tall 6-footer or a shrimpy 5’1″-er like me. Very disconcerting because I used to be a very good judge of height. Hey, I don’t mean to gripe about this too much.

Featured Image -- 168There are actually some perks to being in a wheelchair: you don’t have to wait in line at a restaurant. I tend to get a table right away. I guess it’s bad “optics” to have a wheelchair-bound person sitting outside the restaurant trying to get in. If I drop something, people from all around rush to pick it up for me. Never mind that I have no problem picking things up off the ground – it’s my right leg that isn’t working, not the rest of me. Still, it’s nice, and it’s good to see young people in particular being so thoughtful. Ditto for being at the supermarket. I just have to look up longingly at something on the top shelf, and people clamor to help me get it. It’s kind of nice, actually. I didn’t get this much attention when I was standing on my own two feet, just being short.

I hope one day fairly soon to be out of the wheelchair. Maybe I’ll need a walker, maybe I won’t. Apparently, I have some form of diabetic osteoporosis and keep breaking bones, so being careful will be my motto for the rest of my life. Standing or sitting, i intend to enjoy my life as much as I can. So, if you see me rolling by, give me a wave. And if you block my view to anything, expect to be stuck in the back with a pointy stick. Cheers!

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.

Have your tool kit ready! Tough Time Survival!

The other day I awoke, took my first set of morning pills that have to be taken on an empty stomach (and then no food or drink for 30 minute after), and then did something very stupid.

I forgot to take my other medications, the ones that require food.

My dog decided to go ballistic over a new puppy next door, and I was busy dealing with his barking.  I then just went on with my day.

WHAT A DAY IT WAS!

I began to feel very weak and unwell.  This was not only physical, but also mental.  Now, those of us with a chronic illness deal with a lot of depression.  Pain demands a great deal of energy, both mental and physical. I am aware that one of the medications I take does not “build up” in the body and missing even one dose is dangerous.  I was about to find out how dangerous.

Somedays, you just know things are wrong. (photo by Mark Roberts)
Somedays, you just know things are wrong.

I had cramping, a blazing headache and started shaking.  What I was truly most frightened about was the depression and anxiety that set in quickly. Each hour brought more pain and more anxiety.  I felt I simply could not live with so much pain and depression.  While not suicidal, I was using all the tools and tricks I knew to keep myself somewhat calm.

I began monitoring my physical symptoms, making sure that they did not escalate to where I would need to go to the hospital.  I was ready to go in if needed, and knew it would be important not to drive myself.  I had the number of the local taxi service out, and also had texted my husband at work. Thankfully, before I got to that point, I figured out the problem.

Do you have a tool box full of tricks and treatments?  The time to “wing it” is not when you are in the middle of a crisis.

So what were the tools I use?  What’s helped me in the past deal with a sudden onslaught of pain and depression?  Here is the short and the long version!  WHAT TOOLS DO YOU USE?  PLEASE SHARE!  Because you can never have too many tools when dealing with chronic illness!

MY TOOLS

 Cliff Notes Version

1.Depression lies (thanks Bloggess)

2.Laugher is the best medicine

3.Distraction is important. (thanks youtube)

4.Have friends on stand by at all times.

5.Nature is good

6.Indulge.

7.Stop trying to do stuff, especially stuff you don’t want to do.

8.You have an illness, of course at times you will feel unwell!

9.Share you are having a rough time of it. (this includes sharing with your physician or go to the ER if things really escalate)

10.Don’t forget to take your medications correctly!  They can only work well if you follow directions on when and how to take them!

 

My Tool Box

1.Remember the Bloggess.  Jenny Lawson (aka the Bloggess) has blog posts that are helpful in two ways.  The first way is she writes about the important fact that DEPRESSION LIES.  My depression was lying to me saying “This pain is so horrible, I can’t live with this.  Obviously the medication is not working.  You’ll never be able to do anything other than suffer….”  I just kept remembering it was lying to me and just a few days ago I felt great, and I would feel good again soon.

2.Remember the Bloggess.  Again.  Because it’s important to DISTRACT YOURSELF.  That means avoiding anything depressing, like self help books about depression.  Or sad movies.  Or the news.  You have to laugh, and some of her blogs will make you laugh.  Think giant metal chicken, and you will survive. I also recommend the youtube bloggers Simon and Martina at Eatyourkimchi.  Martina suffers from a chronic illness.  She gets your pain, but she also shares the comedy aspects of life in South Korea.  You will laugh.

3.Think “Kitten Videos”.  My daughter called me from half a world away, where she lives, and told me “Watch kitten videos”.  Anything that makes you go “Awww” works well.  Also cats will make you laugh.  Avoid anything with Sarah McLaughlin, we want happy videos about animals. This cat site has calming videos of Persians. The most famous is India the kitten.  Also call your own pets over, nothing is more calming that our pets!

My grandkitteh Aladdin makes me smile.
My grandkitteh Aladdin makes me smile.

4.Remember your friends.  I’ve recently moved to a new neighborhood, and I really don’t know anyone well enough yet to knock on their door and say “Can I just sit here for a bit, I’m scared.”  Instead I have a mental list of everyone I could text and call that would drop everything to be there for me.  Just to listen.  The list was topped by two great girlfriends, and they also have my husband’s phone number.  The point wasn’t that I talked to anyone, the point was I knew I could talk to someone if I needed them.

I would also like to especially thank my friends, who while I did not call them, are always there for me.  When you give someone with a chronic illness permission to call, you are doing a good deed.  Just the KNOWLEDGE that I could call my friends made me feel less anxiety and safe.  Want to be a hero?  Just give a friend permission to “call if needed” with no judgement- just support.  Even if they never call you, that knowledge “I can call” is a wonderful gift that will help your friend through tough times.

remember your cheering section, even just a few friend can be all you need to get you through a rough time.
remember your cheering section, even just a few friend can be all you need to get you through a rough time.

5.Go outside.  If this was a real depression, not a lack of drug reaction, this would have worked pretty well.  It was a beautiful day and the combination of sunshine and walking the dog would have lifted my spirits.  I felt anxiety so I took the dog for a walk in the wooded area behind my house, and nine of out ten times, this makes me feel better and that at the very least I made the dog happy!

6.Break the rules.  Dieting?  Eat something you like, and forget the calories.  Find a great book on Amazon, who cares about the budget!  Order that $15 book and munch away on buttered popcorn.  Indulge.  You are interested in getting through the NOW, and you do whatever it takes.  Probably a glass of chardonnay, or a bottle of chardonnay, or heck a barrel of chardonnay, is not a good choice. But for me, food and a book works very well.  Also know your body.  A glass of wine is very helpful for many friends with chronic illness.  If it works, and you feel comfortable with it, do what works.

7.Don’t try too hard.  This is the most difficult for me.  I  hate that when I am depressed or in pain I have a “Wasted day”.  NOTHING is going to get done.  I’m just going to deal with the illnesses all day!  So I keep trying.  I cleaned the litter box, and I was “There I did something!” But I was exhausted and felt guilty as that was all I had done.  I had to then assure myself “You have a serious illness, and taking care of yourself and dealing with this illness IS YOUR JOB.”  I assured myself I would feel better, and it was time to stop faking being well.

As long as you keep moving, you are in the race. Don't expect to keep up with everyone else.
As long as you keep moving, you are in the race. Don’t expect to keep up with everyone else.

8. Give yourself permission to feel unwell.  This ties into number 7, if they day is a write off it’s fine.  It’s not a write off if you are battling to keep sane and deal with waves of pain. That’s job enough, don’t try to throw making a huge dinner or cleaning all the bathrooms on top of it.  If you are not a positive Pollyanna type, accept it.  My neighbor with RA is very upbeat.  She is “In the past we’d be in wheelchairs!” (I have also hints she is on some wonderful meds I avoid!)  I’m not going to be upbeat all the time, and that’s fine.  We should not let others tell us how to deal with our personal chronic illnesses.  Grumpy cat types unite!

9. Make sure people know you are feeling unwell.  Ask them to check in with you.  I sent my husband a text, telling him how things were.  He called right after he got out of a meeting.  If you know someone is going to check on you, especially if you are alone, you’ll feel safer.  I even reached out to people in Facebook, just in a PM, “I’m feeling bad, I’m having a bad day.”  They checked back throughout the day.

10. CHECK TO MAKE SURE YOU DID NOT MESS UP YOUR MEDICATION!  When I felt myself getting worse, I thought, “I’m going to take my next dose of medication early, I can’t wait another 2 hours.”  As soon as I saw that pill container with the arthritis drug I felt instant relief.  I still felt like crap but I KNEW WHY.  Medicine timing is very important.  Read the instructions, and be clear with your doctors about WHEN is the best time for taking a medication.  My thyroid medication took almost 6 months to figure out. When I took it at night on an empty stomach, I suffered from insomnia!  The middle of the night, I awoke about half an hour later with insomnia.  First thing in the morning works best.  However, not if I forget half an hour later to take the other 3 medications I rely on.  Medication juggling is very difficult.  We have to be vigilant.

 Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.
Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.

Medication mix ups can also be very dangerous.  I was getting ready to call my physician right before I discovered what had happened.  I knew that I was getting worse instead of better, and that my “tools” that usually work well were failing me.

…..also you don’t have to have a chronic illness (or two of three) to share your TOOLS that get you through the tough times.  I would love to hear more ways people have of making it through the tough times.

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!