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.

 

 

 

 

 

The illusion you will be able bodied forever and the limits of empathy

because I’m so tired of friends that are “well when you are BETTER”… and it’s not going to get better. Or even your friends that do have a chronic illness but they handle it differently… their pain and their coping is not your pain or coping skills.

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!

Now what? Whatever!

So, Now What?

By Maria Myrback

I have been told time and again that, right now, my job is my health. I have heard multiple people express how chronic illness is a full time job. I understand that. I really do. But I still feel driven to do SOMETHING with my days.

I’ve been a writer since I was 12 years old. I’ve spent the last 36 years intermittently writing everything from fan fiction (Poor Luke Duke fell in love with me so many times when I was 13) to unpublished fantasy novels to local newspaper articles to this blog. I love writing. I also love trying new things. I’ve tried my hand at nearly everything I’ve ever had an interest in, just to see if it fit.

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always time to bloom….

Most of it didn’t, for one reason or another. As regular readers know, I found something that made my heart go pittypat in herpetology and my research into Burmese Pythons. But epilepsy has taken that away from me. You can find details in previous articles, so I won’t take up space rehashing it here.

I still feel a desire to do something with the times like these when I am not drugged out of my tree or having so many seizures that I can’t complete a full sentence without stopping. Yes, eventually we’ll probably do something more with this blog. But what else?

Right now I feel like I’m just taking up space. I feel like, aside from this blog, I’m not accomplishing anything of use. Yeah, yeah, I know I’m not useless. Yeah, I know I’m not taking up space. I just want to be productive.

So, now what?

Yes, I plan on continuing to write for BH. I know I’m doing some good here. But what else? I have other projects that I started PE (Pre-epilepsy) but are they things I want to pursue? I just don’t know. I’ve got a spiffy room to create art if I want to. I have three books that I have partial story bibles for. One of them, I’ve even written a bunch of scenes for.

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Not time to hang up my dancing shoes YET!

Here’s the thing. It’s urban fantasy. Is anyone going to take me seriously with BH if I publish a book about faeries? Should I bother with the UF even though I love where this potential series is going? Should I just write it for me? Do I get a nom deplume for one of them? And what about the art? Do I just abandon it and chalk it up to something that didn’t fit? Am I asking too many questions for this paragraph?

So, now what?

There is so much I still want to do with my life. I can’t let an illness keep me from doing at least some of it.

David Bowie, a loss I will feel for a long time, was someone whose music and movies I grew up with. He was a person who taught me that being different is okay. Being different is good. From him I learned that we can show our difference to the world boldly and without shame.

His last gift to us, his fans, has taught me so much. The painfully raw video, “Lazarus” is a visceral reminder that, beyond the pain, beyond the frustration and anger, beyond the heartache that illness brings, we all still have one thing.

Time.

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.

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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.

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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.

 

The Dark Side of Side Effects

When Medications Attack

By Maria Myrback

Remember how drug commercials have this big, long list of side effects? And how, when you get a prescription filled, they give you an encyclopedia’s worth of papers about that med? There really is a reason for that.

Once in a very great while, someone will have one of the extremely rare side effects on that list of extremely rare side effects. Lucky me, I won that lottery. Now, if I could only win the Powerball…

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Things got weird, very weird

Even as I write this, I still feel a bit detached from the situation. Thank goodness I don’t find it funny anymore. Though, you gotta admit, my telling the receptionist to calm down and take deep breaths while calling about this weird suicidal ideation thing… That’s pretty funny.

Isn’t it?

But I digress for comic relief.

What happened scared my husband, my father, and probably a few other people who are uncomfortable talking about this kind of thing. When we’re talking about medication and the brain, no one really thinks that a super rare side effect is going to happen. That’s the reason that it’s a super rare side effect. But it does happen.

Before I go on, let me just say that this is NO ONE’S fault. We had been working my dosage up slowly to get me acclimated to the new drug and I was doing just fine aside from still having some seizures. I had already been weaned off the old drug so there wasn’t an interaction. I don’t blame anyone and no one is at fault.

 

With that in mind, what follows is what I can remember when we went from 100 to 200mg of the antiepileptic med. I took the first one at night, figuring the sooner the better. I noticed I was sad, but I thought that was because of the phenomenal cost of the pills. So I was doing what I usually do in this case: mentally beating myself up. Fortunately, my daughter was on Facebook and we had a good time pretending to be Starfleet officers. By the time I went to sleep, I was feeling much better.

The next morning, I woke up feeling alright, still smiling about the previous night’s fun. Then, about a half an hour after I took my morning pills, that’s when things started to go sideways.

I kept looking over at the steel hair stick on my nightstand and wondering, for no reason whatsoever, if puncturing my jugular with it would kill me. That should have been the first sign that something wasn’t right, but it seemed like what I should be doing. Nobody suggested it. I wasn’t reading or watching anything that influenced me. It was just part of the list of things I should do that day.

So I started researching which would kill me faster, puncturing the jugular or the carotid. Turns out, the carotid will make you bleed out faster. Since I didn’t remember where exactly in the neck that was, I started looking at physiology diagrams to find the best place to stab myself without making too much of a mess.

That was when Ken asked me to look up the address for the new Veterinarian because my dog had an appointment. I felt mildly agitated because he was tearing me away from my research. Yes, the research on the best place to stab myself. It was okay though because he was taking the dog and I was to call him with the info.

Through all of this, the linear equation of A (stabbing) + B (carotid artery) = Dead wasn’t making sense. Stabbing was something you did. The carotid artery was a thing in my body. The two weren’t associated in any way at all. It was just something I was doing. Like a honey-do list, but with sharp things.

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Even after I called Ken with the address, I still hadn’t been jarred out of this state. But there was something that didn’t seem quite right. When I had the diagram in front of me that showed me the best place to hit my carotid, something seemed weird.

I thought maybe something was wrong with my meds but I didn’t want to bother my neurologist’s office with nothing, so instead I called the suicide hotline, thinking they would know the answer. I really didn’t want to kill myself, but stabbing myself in the carotid just seemed like the thing I should be doing.

And that was what I calmly explained to the man who took my call.

Just as calmly, he explained that I should call my neurologist and tell them what was happening because I was having what he referred to as “suicidal ideation”.

Which is weird.

I mean, it’s not like I wanted to die or anything.

It was all just so weird.

And that’s what I told the receptionist at the neurologist’s when I called. I had this weird thing going on and the man at suicide hotline said I should call there.

That was when I thought something might be wrong, because she started getting really upset. So I told her to calm down and take deep breaths, that it was okay. I just had this weird thing.

No big deal, right?

After I got off the phone with her, I called Ken and told him what was going on. He very calmly told me he would be right home and I should just stay in bed. I was pretty pliant at that point and feeling kind of sleepy, so staying in bed sounded okay.

I don’t remember much of anything after he got home. I know he took a call from the neurologist. Then I think I slept for a while. I remember going to the doctor’s office later to pick up free trial packs of the new dosage because Ken wouldn’t let me stay at home alone. And that also seemed weird to me.

During that entire time period, it was as if all of my actions and their consequences were completely separated from one another. If I stabbed myself with a sharp object, nothing would happen because all I was doing was moving my hand. My carotid artery was just this place that existed on my body and not the target of a pointy thing. It would still continue being an undamaged thing on my body.

It was so weird.

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Because side effects, can just make things weird

Two days later, I was perfectly fine. Granted I was still having some seizures, but they’re not as frequent. I am holding out hope that increasing this medication at a slower rate will control my epilepsy. I’d say it can’t get any worse, but as I found out, it most certainly can.

Thanks Maria for sharing a very personal story, but bringing up a point we should all be aware of : Medication comes with side effects.  Some of them are very dangerous.  Maria recognized this was “weird”, and thankfully reached out to get help. It is indeed not the fault of anyone, but it is important for everyone to be aware of th