You say YES, your body says NO

I decided to with my new Arthritis medication working fairly well, I would try to reclaim some of my “missing life.”  We all have parts of our lives missing.  Things we can’t do, that we used to be able to do.  I’m not talking about playing the violin, unless of course you were a violinist before your arthritis struck, but those things we used to commit to do without even thinking.

I used to give talks.  Talks on education.  Talks on art history.  Talks on teaching art, viewing art, buying art, valuing art….

I also gave talks on skeptic education, such as Bigfoot, UFOs, alien abduction and had a specialty in New England paranormal history.

When I was asked to give a talk before I was always honored and happy to say a resounding YES.  YES, I would love to travel to where ever to share what I know.  YES, I love putting together a fun power point.  YES, I love answering questions, and I’ll gladly show and even contribute snacks.

205057_5504227420_6229_n
I can talk about animals with Bigfeet

The only thing I needed to check was my calendar.  I would travel all the way to TAM at Las Vegas, or drive 6 hours to my favorite talking venue at the Central NY Skeptics in Syracuse.  If the calendar was clear, I was ready to go.

I haven’t given a talk for over 3 years.  That’s because what was “No problem” became “Big problem”.  I was mortified when I had to cancel a talk at CNY skeptics just days before I was to speak as I needed surgery on an artery in my head.  This was the beginning or a long period of diagnostic testing to discover I was suffering from two types of Arthritis.  There is nothing worse than letting down your favorite group, and to do so at the last minute was especially distressful.

I’ve had to confine my skeptic education to blogging.  It was only recently that I decided I try speaking in public again.  I’m on a new medication that is in a testing phase.  My response has been good.  Not “I’m cured”.  But certainly helpful enough that I have gained back some of my courage.  I could perhaps, do a talk.

I looked at the local library and saw they were offering something called “Out of the Ordinary” brown bad lunch talks.  Among the speakers were the local so called psychic, the local ghost hunting group, and a UFO “expert”.  I noticed there were two dates on the library calendar that said “Come hear our mystery guest”.  As an experienced speaker I know that means “we don’t have a speaker for these dates.”

As a skeptic, I knew if I could get a gig as one of the “Mystery speakers” it would be an invaluable opportunity to teach an audience ,expecting woo and the paranormal, about skepticism.  The skeptic educator in me had to ask “Are you up to this challenge?”

s-l300
Nothing is more wonderful than a great audience!

I had to think about the changes on this new medication. Did this medication give me the freedom to commit to something, for just an hour, or would I risk letting the library down if I were ill?

My old medication gave me the feeling I had become someone that just basically had turned from a human being into an illness.

The illnesses ruled my life.  I could plan nothing.  My bed was the only thing in my life that was consistent.

This is one reason I volunteered to try a new off use medication.  My doctor asked me as he could tell the methotextrate was making me depressed. The other Rheumatologist at the practice is a firm believer in Methotextrate.  He refuses to try anything new, because he contends “We know the history of Methotextrate.  We know all the side effects.  We know that it helps patients.  I won’t take a chance with my patients as guinea pigs.”

My Rheumatologist is young.  He’s the newbie.  He graduated from the school on a tropical island.  He treats not just my illnesses he treats my whole body.  Including my mind, which was in a critical state.  I volunteered for the new medication because I have adult children, no financial need to support anyone, and I was desperate for that one thing that keeps all of us going… HOPE.

The new medication gave me enough energy to commit to ONE THING each day.  Nothing big and timing was important.  But it did open up life for me again.  I wasn’t just my illness.  I can now get a haircut.  I can commit to a time and appointment and get a haircut.  That’s huge.  I can go shopping for about an hour.  Give me a cart to lean on and I might make more than one store.

So I committed to the talk.

postcard-chicago-exhibit-supply-company-arcade-card-woman-sitting-on-stool-by-water-1920s
always ask for a stool

I had a wonderful time at the talk.  I hope the audience enjoyed it and learned a few new things.  I was in a bit of pain as I had to stand for the entire talk.  That’s because a podcaster was recording the talk.

I made my first mistake.

While I can commit to something, I can’t do something like I used to.  Standing for an hour was very painful.  I thought too late to ask for a stool.  I needed to be near the microphone, so my plan of just sitting was OUT.  Also, it is important to be seen when you are speaking. So asking for a stool is on my list of things for any future talks.

Then afterward I agreed to do an interview with the podcaster. That was fine, especially as I had a friend help me with the interview. He knew a lot of answers I did not know.  But, that was a second hour.  Finally I hung out with my friend a bit.  No problem but I was fading quickly.  The standing for an hour had taken a toll on my joints.  Flaring was happening.

The next day, I wasn’t able to do anything.   Well, I did do a lot, I was icing joints and feeling sad that my foray into the “real world” was a failure. It wasn’t, but I missed an important appointment because I was in too much pain to keep it.

If I had used a stool, if I had limited my time after the talk, and if I had expected that naturally there is always a price to be paid for any activity, I would not have felt so upset with myself.  The point is I can still do a lot of things I used to do, but I need to do them differently.

vintage-woman-reading
Next day rest day… and how!

I also need to know, I’ll need a day of rest afterward.  It’s not making the entire Universe, but my body demanded a day of total rest after my exertions.  No amount of “will power” could overcome the pain and exhaustion.

So, can we do things we like to do? Of course.  Will we pay a price? You bet we will.  Does it mean we give up and never take a chance and just stick to our schedule of  “what works” and causes us the least pain in our lives?  That’s up to each person.

I wasn’t ready to commit to another talk until I had fully recovered and thought for a bit.  Was the pain, the entire day after “wasted”, worth the feeling of being productive and educating others?  Maybe not the day after, but the week after I truly felt it had been worth the pain.

In other words, I’m open to speaking engagements again.

 

 

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.

1353545415596607
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.

feda76a8af793418bc3b00ecfa58a5cd

 

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.

chicken
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.

vintage-luggage1
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.

 

 

 

 

 

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.

igloo1
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.

tumblr_nodzb9Ttvm1rxavt0o1_1280
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.

 

salvador-dali-clocks-e1414268968772
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.

17204899722_20aa5c0cee_k
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

7fde69d02a969c2d6a544c08607aca74
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!

RIP Glenn Frey

My husband is upset and worried.  He knows of course that I have a 2 serious forms of arthritis.  He knows I take serious medications to control not only the inflammation but the pain.  He knows these medications have serious side effects, the worst being horrible intestinal pain, and that there is an ever present danger of ulcers.

He understands that I often spend part of the day or night hugging a heating pad and crying in pain.  There is the acid burning and trying to sleep slightly upright to keep the acid reflux down.  There are prescriptions for Prilosec, that don’t work well.

He knows all this, but I’m still here.

just us
We’ve ben together a long time, being alone seems scary.

Then he read about the death of Glenn Frey, musician and member of the Eagles band.

He understand that these horrible immune diseases are going to kill me sooner or later.  Unless I’m hit by a truck or some other disease carries me off, this is going to be on my death certificate.

The problem was his reading the details of Glenn Frey’s death.  The long term hospitalization.  The induced comas.  The side effects killed Frey, and it wasn’t pleasant and it wasn’t quick.  The number one death of RA patients is ulcers and side effects from the medication.

Frey worked out, he was a “workout warrior” to keep his RA in check as much as possible.  I unfortunately do not have enough control over my disease yet to be a “workout warrior”.  Gentle walks are a huge step up for me.  New medications are helping a lot, but my case is far more serious than that of Frey.  Working out is not an option.  That was huge, because my husband believes I am  “doing fine”… or as fine as it is possible with this serious illness.

Frey had his disease for 15 years.  Mark sees this as perhaps only having me for only 10 year more, and possibly less.  That scares him.

What scares me is the sort of drawn out death of months in the hospital. I truly dislike being in the hospital. It’s depressing, it’s boring, it’s often painful and it’s scary.

So tonight when I had a terrible attack of acid reflux and pain, he was upset.  Because he sees this as a hint of how our future is going to end.

12376287_10153378694166242_1992711032430736921_n
This is how it feels inside… and it kills a lot of us.

We then remind each other, that much of the time we are happy and doing well.  That there are the gentle walks with our dog we enjoy so much.  The movies we watch together and enjoy.  The decorating of our new one level home, which we moved to knowing that one floor living was important for my safety and comfort.  There are many good times yet to come.  Most people don’t have a very pleasant or pain free death.

Those of us with chronic diseases understand much like Frey, our fates were sealed with our diagnosis.  It’s how many years, and the quality of those years.  I hope that I can keep my focus on the good times, and keep my husband’s focus on those good times also.

 

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.

$_35
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.

1919115_10201313277749218_5620351818094018522_n
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.

10154016_10201313277909222_7061639787074029500_n
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.

12392005_10201303755551169_1817699001023855592_n
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”

12138364_10205911146511322_7901745668312132214_o
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.

qsnyyntiv42aslzmfcia
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!”

scan0518
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.

leech-fezziwig-8-1
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.

205057_5504227420_6229_n
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.

12235104_10153177936320913_1865679509297719192_n
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.

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.