Health Care System= Not Good for the Chronically Ill

We, the chronically ill, have many, many health problems.  A cold is not just a cold.  The flu is dangerous.  We must see specialists often.  We need many medications, which are often very expensive.  So, generally we are a pain in the ass for the health care system.

I think, though, we would be less a pain in the ass if we were able to get the care we need in a more efficient, and less complicated, manner.  Case in point: I need to start physical therapy. So, after asking doctor for written referral, I looked online to see which physical therapists accept my insurance.  Friday, I called, made an appointment and was told that their benefits person would check my coverage and call me back to explain what the coverage was.  That was all fine.

Got a call this morning from benefits person.  They no longer accept my insurance.  Ok then.  So, I call the insurance company to get a list of physical therapists in my area.

There were two.

Tried to look both up online to compare; no website for either of them, though one is associated with a very nice skilled nursing center.  I pick one and call the number given to me.  They no longer have a physical therapist at their location.

Which brings me down to one choice, the one housed with the senior home.  I call them.  She very nicely said maybe they could help but they have been having problems lately getting authorization from my insurance company because “we are listed wrong in their system.”

So I am down to maybe hopefully one?

Here’s the thing: I NEED physical therapy.  I would assume everyone involved would like me to be able to function, to work, to do the things I need to do.  Because then I am healthier and less costly to the health care system. Right?

Except I am having to scramble to find someone to help me.  And how often do I hear stories of others with chronic illnesses who must fight for drug coverage or must fight to see a specialist or who must jump through hoops to get the necessary care.  It’s insane.

Because here’s the truth of it: this fight to get health care, to get our bodies even just a little better, this fight makes us sicker. The stress and the worry and the energy we have to spend on the phone with insurance companies and doctors and pharmacies- all of that adds up to a drain our weakened bodies.

So yeah, the problem with the way our health care system is set up right now is that it makes us sicker.  Instead of doing its job, which is to make us well.

Hopefully I will get good news about the PT.  Otherwise, more fighting for me.

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A Bad Day

Yesterday I had a no good, very bad day.

When you have a chronic illness, you get used to a sort of baseline of pain.  It’s like you figure out what your “normal” state is.  This normal state is your typical level of swelling and fatigue; your typical level of joint pain and stiffness, of general body pain; your typical level of inability.  People without chronic illness may not understand this, or may only think they do, but those of us who have some wonderful disease, know what this means.

Yesterday wasn’t normal.  I think yesterday may have actually been my first really bad day since I began the many medications I am taking.  Oh, I have had some bad days, some slightly worse than normal days.   But I had not had a very bad day yet.

I would like to never have another, honestly.

If I list today all the things that made yesterday suck, I don’t think it would effectively capture it, mostly because it wasn’t just the things that happened, it was the accumulation of those things that were too much.  I could barely move; I was exhausted; my swelling was much worse than normal; my mystery abdominal pain returned; my pain was so bad I was nauseous.  Add in: everyone in the house was upset or tense, doubling my tension; I burnt myself and cut myself while helping cook dinner; I had a total sobbing breakdown at one point because it was all too much.  It really was all too much.

Is this what I have to look forward to: normal bad days broken up by the really horrible ones?  I really hope not.

I can hearing this piece of a song in a head.  I think it’s from (of all things) the old Rudolph cartoon, tho it may be another of those badly animated Christmas specials.  The characters are singing “You put one foot in front of the other.”  And that’s what I have to do, even if those feet are slow and swollen.  Put one in front of the other and hope for the best.  After all, they can’t all be very bad day days.

 

It’s the Little Things

It’s the little things, taken together, that add up to a whole different life.  Looking at my day there are so many little things that are different, so many little things that I have to do differently, because of my illnesses.  So many little ways I must be different.

When I wake up in the morning, the first thing I do, sometimes before I open my eyes, is move my fingers and toes.  I am checking to see how stiff and swollen they are.  After that, I take a few minutes, giving myself a mental pep-talk.

After I get up, I go into the kitchen to get myself breakfast right away.  I can’t take half of my meds until I eat, so hungry or not (usually not), I need to eat.  I have yet to find a breakfast food I consistently enjoy.  Mostly I resent breakfast.

At breakfast, I take 8 1/2 pills.

On Friday mornings, I add in the need to refill my pill container.  I can no longer trust myself to remember which meds I have taken each day, so I have a weekly pill holder that is divided into four slots each day.  So Friday morning,  I fill all the slots with the appropriate pills.  Today I realized my medication list wasn’t up-to-date so I updated it and reprinted the list.

After breakfast I chill.  I wait for my body to warm up.  That’s how I like to think of it, like a car that needs to be warmed up before it can go anywhere without alot of noise and resistance.  So I sit and warm up.  Then I take kids to school.  In my pajamas.  I realize this is bad.  I realize I should brush my hair and get dressed.  But I just can’t do it.

When I get home from that, I warm up some more.  I also pace my house as “exercise” so my back can get loosened up.  Somewhere between 9-10, I do my back stretches on the living room floor.

My day is typically split in parts: pacing house, resting, stretching.  Usually somewhere around lunch I find motivation for a shower.  It is generally an hour after my shower before I find additional motivation to dry my hair.  The last few weeks, drying my hair is an adventure: I am waiting to see if my hair starts to fall out.  So far, no more than usual.

I pick up oldest from school at 2:30.  This is also an adventure.  Driving is difficult, painful.  Nerve-wracking.  Somehow it seems that there are too many things happening.  I get over-stimulated.  I forget which gear I should be in sometimes.  I have to really focus on what I am doing.  I find myself excessively speeding without realizing it.

I generally don’t do the dishes- my one consistent household chore- until around four.  Most days I do okay with this, and for sure my hands love the hot water, but there are days that I can’t seem to do a good job.  Those days Bill and Riley point out the still-dirty dishes.  Those days I feel deeply ashamed that I am no longer capable of that simple task.

Some days I make dinner.  Some days I don’t mess up dinner.  Those are the good days.

At dinner, I take another six pills.  Except Wednesday.  Wednesday I take six at dinner and four more a couple hours later.

Most days, somewhere among my little bit of driving or my rare errand, I have to take pain medication.  The prescription kind.  No more tylenol for me!  No sir.  I was really bothered by this at first and put it off as long as possible, until the pain was debilitating.  Then I realized that was dumb.  If I can take medication when the pain first starts, then I can head it off.  So now, I am a more frequent user of Tramadol.  Life is easier that way.

Some other little things that are different about my days these days:

I spend a lot of time thinking about my health, my body, my symptoms, my medications, etc. Every new pain must be analyzed: is it fibro? RA? A new things altogether?

I move my toes and fingers deliberately, checking for new problems, checking to make sure they still move

I am constantly aware of how much pain I am in, of what my day needs to look like based on that pain

I try to wear a bra as rarely as possible, because they are just too uncomfortable

I wear long sleeves, and sometimes a sweater too, almost always even though it is around 70 in my house, and sometimes outside as well.  I am just cold all the time.

I am foggy in the brain.  Forgetful. I use the wrong words for things.  I can’t remember what I am doing, where I put things five seconds earlier.  Unfortunately, I am not foggy about being foggy.  I always know that I am foggy, that I am forgetful.  That my brain no longer operates the way it should.

 

It is all the little things that add up together to exhaust me, to make me sad and mad and frustrated.  These things will become routine soon; these things will no longer seem extraordinary to me soon, but will be part of the new normal.  Until then, it is all the little things that constantly remind me of the life I lost, and the new one I must get used to, so I can move on. Accept.  Thrive.  Until then, I will take it one little thing at a time.

 

 

MTX: Week Two and Other Tid-Bits

Day after second dose of Methotrexate.  Again horrible fatigue, that I am just starting to almost see the end of.  Only other thing of note is the horrible metallic taste in my mouth.  Which definitely is better than nausea.  The only thing particularly annoying about the metal taste, is that combined with my usual dry mouth, I pretty much want to be drinking water constantly.  But whatever. Could be worse.

While I was in bed this morning (because I couldn’t be anywhere else), I started How to Be Sick by Toni Bernhard (which I heard about on Butyoudontlooksick.com).  So far I really like it.  I’m not particularly spiritual, so some of the Buddhism stuff is not my cup of tea, but at the same time, alot of what she says really resonates.  And so, far, all of her suggested practices can be easily used by anyone, regardless of their spiritual beliefs.  I’ll post an actual review when I finish it.

In other news (that is, for once, not at all about my being sick), my oldest kid is going to prom this weekend.  CRAZY!  His school is small, so prom is open to all grades, which makes it slightly less odd to have a child old enough to go to prom.  It’s more like a super fancy dance, with us dropping them off and picking them up, etc.  But still.  I’ll be watching him dress up in a tux on Saturday and trying not to cry!

And that’s all I’ve got for today.  Hands hurt too much to attempt anything profound.  Very glad, though, to have gotten through dose 2 without any serious badness.

Wishing you all a great end  to your week!

Really Easy is Really Hard

Let me just say this first: there was a time, years back, when I was in good shape.  I exercised regularly.  I was never skinny because I’m not built that way, but I was in pretty good shape physically.  But the key point here is I could do med-hard exercise without much issue.  The past few years I have gained a lot of weight, for one reason or another.  I am no longer in good shape.  I know it.  But up until the last year, I could still walk a mile (for example) without a problem. I could still move my out of shape body.

But now, here we are.  It’s all difficult.  Walking.  Exercising.  All of it.  Part of that is being over-weight, but a big chunk (more than I knew actually) is the fibro/RA taking their toll on me.

All of that said, I know I have to exercise.  I need to lose some weight, but more than that I have to keep moving so I can try to keep the fibro and the RA under control.  Mostly I have just been walking the dog with Bill, but I have also started adding in some arthritis exercise dvd’s, some light yoga, lots of stretching.  I also decided to start taking a “gentle” water exercise class once a week.  It is not an arthritis foundation approved class, but it’s in the same vein, I think.

Anyway, yesterday was my first class.  I got there early, and checked in at the front desk.  I wasn’t sure if I needed to sign in or anything, and I had missed the first class, so I asked if there was anything I needed to do.  When I told her what class I was taking, she laughed and said “Oh, that class is easy.  Really easy.  You can just go in.”

Really easy.

After braving the locker room (how I hate them), I went to the pool, where everyone was at least 30 years older than me.  Including the instructor.  Most of the ladies were also overweight like me.  They were all incredibly nice to me, including the instructor who gave me lots of direction.

But here’s the thing: it wasn’t really easy.  Oh, it should have been.  With my past exercise knowledge, I know it really is an “easy” class.  Besides being in the water, which helps, all of the moves are pretty simple, and there is nothing overly demanding involved.

And yet, I wanted to stop after about eight minutes (yes, I looked at the clock).  It was hard.  Very hard.  Not only that, but it was exhausting.  I came home and wanted to go straight to bed.

So, I have to ask: is this my life?  That taking the easy class with the 70 year old instructor is going to kick my ass?  That my 35 year old body is actually less able to do things than someone’s twice my age?   Is this what I have to look forward to?

Does it get better?

I guess we’ll see (there’s that we’ll see again).  Maybe with all the meds, and with physical therapy, and with acupuncture, and with regular walking, and with my once a week water class, and with all the other things I am doing, maybe with all of those things my body will be less broken.  Will be more functional.

Maybe.

 

Product Reviews and Tips (A Not Quite Blog Post)

I’m not going to blog today.  Except obviously I am!  Actually, I just want to point people to the page I added today because I worked hard on it this morning!   You can find it at the top by clicking on “Product Reviews and Tips” or you can click the link.  I plan on adding to it as I go, so if you have things you’d like to see reviewed, let me know!  Or if you want to add your own, feel free to send me info and I will include your reviews.   Or tips.  Or both.

Q. Why am I doing this?

A.  Because I always read reviews before buying anything.  Because there is too little info out there to help people with chronic illnesses make good purchases and decisions.  Because I want to and it gives me something to do.

Q.  Is someone providing me with free products?

A.  I wish.

Q. What if you disagree with my review?

A. Tell me!  I’m happy to add people’s comments/opinions/reviews.

We’ll See

Today I accomplished a little.  It was nice to feel like I was contributing, even if it was something as silly as filing a whole lot of paperwork that’s been building up in our office.   So, yay for me!  Hope I can finish this week.

In other updates: today we (me and the rheumy) decided to double my Lyrica dosage.  So…the first few days I am supposed to just double my night time dose and then add in the morning double dose later this week.  Hoping to see a difference with the changed dose. I actually really like the way the Lyrica helped with the fibro but then the effectiveness seemed to dull a bit after the first week.  No side effects that I have noticed during the first month of it, so we just need it to work a little more. So we’ll see.

Also, bought really really expensive sandals this weekend that should be amazing for my feet (so says the guy at shoes store).  We’ll see on that, too.

I guess it’s a lot of we’ll see this week.  Because really, that’s what life is with chronic illness, isn’t it?  We’ll see.  No definite plans or commitments.  We’ll see how it goes, day to day.

(Have I mentioned, prior to diagnosis I was a planner! But…trying to adjust.  We’ll see!)

 

 

The Struggle to Find Value

First dose of MTX just made me really, really tired.  Like in my bones exhausted.  I want to go to bed for days and days.  Of course, my back pain gets worse if I am in bed too long, so I can’t.

But all in all, I guess the first dose went well.  Looking forward to getting to the point when it is actually doing something.  But we’ve got some weeks left before that happens.

Mostly I am both tired and absolutely pissed off.  Maybe some depressed in there, too.

I am bored being home all day alone.  I can’t go many places without pain or fatigue being too much.  I can’t knit.  I can’t type for long.  I can’t sit for long.  I have being reading a lot, which I enjoy, but there is only so much of that you can do.  I want to be able to go back to work.  I want to be useful again.

Valuable.

I have been doing reading on blogs and books, etc about chronic pain and how you will find the value in yourself but it is hard to get there.  How do you find your value in society, in your community, when you can do so little?  When you can no longer contribute in the ways you could in the past?  When your offers to contribute what little you have are rejected?

I just don’t know.  My best friend and I were talking the other day about this, and she said, it’s hard to think that someone would want to be with you because you know that you don’t want to be with you.  You are sick of yourself.  Why would anyone else choose to stay?  I get that.  I am sick of my body, of the pain and the limitations.  I am sick of the fatigue that is so exhausting in itself.  Who knew that being fatigued was in itself exhausting? I am sick of worrying.  I am sick of wondering if I will ever go back to work, if I will ever be able to drive much, if I will ever be able to do the dishes without wanting a goddamn nap.  I am sick of being sick.  I am sick of waiting for the people around me to walk away, to reject me because I can no longer do the things I once could.  I am so lucky to have a partner who is sticking around.  Who is supporting me in every way, but it is so hard to believe that will last when you know that you are broken, will always be broken.

How can I find value in all of that?  In myself?  I know who I was before: smart and capable, the go to person.  The one who could get things done.  The reliable, independent one.  I am no longer most of those things.  And the parts that are left- well what can I do with them?  When you define yourself by the things you can do at work and at home, when you define yourself by those roles, who do you become when your body says- no.  You can no longer do those things.  What do you do? What do you do when no one seems to want the little bit you can offer?

So yeah.  I am tired.  And pissed off.  Depressed.  Wishing I could go to bed for days and days. But they say, this is normal.  This feeling useless and angry.  This is part of the process toward acceptance.  I am grieving for the person I used to be.  I know it is normal to feel this way, but damn do I wish I could see the light at the end of the tunnel.  I wish I knew what will happen at the other end of this.  I wish I could be sure that even though my body is broken, that my true self will weather okay.

Making Life Doable

With all of the changes to my body because of disease and meds, I am having to make some changes to how I do things.  I have also been compiling lists (both mental and actual lists on my ipad) of things that I want to have, to make things easier.  I call it my comfort wish list.

This list includes:

a lumbar support pillow for the couch

a tool for opening jars, etc

a massage tool called a body back buddy

a heated throw blanket

a heated neck wrap

an ice bag

several books about chronic illness

a few exercise dvds for arthritis

I also have a mental list of things that are stumping me, things I can’t figure out yet how to make easier/more manageable.  Problems on this list include:

How do I shave my legs regularly when bending over hurts? (I suspect the solution there is a shower stool which for some reason makes me sad)

How do I use my cane on days when my hands hurt? (Luckily I haven’t needed the cane since med adjustments)

How do I keep my hands warm when they really shouldn’t be cold in the first place?

What shoes should I buy if I don’t know how swollen my feet will be, day to day?  And, what shoes do I buy for both comfort and support?

How do I make driving manageable?

How much is it ok to ask for help?  And at what point am I just being a pain in the ass for asking?

So, what’s on your wish list?  What are your questions that need solving?  Do you have answers to help me with mine??

The Fill-In Pharmacist

All my worries about the new doctor yesterday were totally unfounded.  Visit was short, totally productive and without any problems at all.

But….I was reminded yesterday: new pharmacists can be as bad as new doctors.

Yesterday I got the official ok to start Methotrexate, so dr’s office called it in to local pharmacy, along with folic acid.  I’ll skip the part of the story with missing scripts and having to get dr’s office involved a second time.  That part is minor compared to the rest.

My normal pharmacist is on vacation.  I love her.  She knows me by name, remembers my meds, offers great advice.  Her fill in- total opposite.

I arrive to pick up the MTX, and it isn’t ready yet.  So I wait a few minutes.  Finally, clerk brings it over and starts to ring me up.

Clerk: You’ve taken this before, right?

Me: No, not at all.

Clerk: Calls Fill-in Pharmacist over

Fill In Pharmacist: Your doctor gave you instructions for this right?

Me: I think so

Fill In: Well, the instructions are really specific.  Let me read them to you.

Me: Ok

Fill In: Ok. (reads from label) “Take 4 tablets once a week”

Me: Right

Fill In: Well, that’s pretty much it.  Have a good day.

Me: Stands in stunned silence

I have gotten better medication counseling for refill scripts.  I have gotten better medication counseling for pretty much every other medication I have ever taken.  And this drug is not exactly a light weight.  We aren’t talking about a vitamin here, or extra strength tylenol.

MTX is a chemo drug given in low doses for RA.  The product info sheet was written in teeny tiny font in order to fit all the info on there (one piece of info included that patients should wear id bracelets- I wonder if this is true).

I am so angry at this pharmacist.  Sure, I know about this medication.  Obviously, I know more than he does.  I know to call the doctor if m side effects are too bad (and they very well may be); I know to call the doctor if I get an infection because I can’t have one while on MTX; I know I have to go in for regular labs to monitor my liver function while I take this med.  These are things pharmacist should be telling patients.  It is his job not to just hand out pills, but to make sure they are taken properly.  Had I not done my research and been as knowledgeable as I am, I would think the only important info is that I take four pills once a week.  I feel so bad for all the people who go into pick up meds without doing their own research- how many people has he screwed over with this kind of approach?

That is unacceptable.

Needless to say, I will be lodging a complaint when my normal pharmacist returns.

And on a side note: I start MTX tonight.  Pretty freaked out, to be honest. But, we’ll see…