All posts tagged Health

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!)

 

 

1 Comment
by akajanie on April 23, 2012  •  Permalink
Posted in Auto-immune disease, chronic illness, fibromyalgia, rheumatoid arthritis
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Posted by akajanie on April 23, 2012

http://creatinganewnormal.wordpress.com/2012/04/23/well-see/

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??

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by akajanie on April 19, 2012  •  Permalink
Posted in Auto-immune disease, chronic illness, fibromyalgia, rheumatoid arthritis
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Posted by akajanie on April 19, 2012

http://creatinganewnormal.wordpress.com/2012/04/19/making-life-doable/

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…

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by akajanie on April 18, 2012  •  Permalink
Posted in Auto-immune disease, doctors, medicine, rheumatoid arthritis
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Posted by akajanie on April 18, 2012

http://creatinganewnormal.wordpress.com/2012/04/18/the-fill-in-pharmacist/

Doctor/Patient Relationships

I have to see a dermatologist tomorrow.  My first visit with this particular doctor, and I’m nervous.  I hate first appointments.  I am particularly worried about this appointment because I have this weird….thing that my rheumy couldn’t name.  The internet yielded nothing.  So I am going into this appointment with no clue what I may hear.  I don’t like it.

Last week, I read a great blog about first dr appointments: Ambivalence.  That blog led me to a terrific blog by a doctor who wrote about dealing with patients who have chronic illness: A Letter to Patients with Chronic Disease which gave me a whole new appreciation for doctors who deal with people like me.

These blogs raise good questions.

What is the best way to start a dr/patient relationship?  How much information should you reveal at first visit?  Should you go into an appointment with ideas about what’s wrong or is it better to go in totally ignorant?  Is it a good idea to come in with a long list of questions or a short list?  How much patience should we have with our doctors and when is it time to shop around?

As patients with chronic illnesses we are too often at the mercy of our doctors.  Many of us require pain medications, but there are docs out there reluctant to prescribe them.  Many of us have strange illnesses that require patience and lots of detective work, but there are docs out there who see the first negative test as an absolute negative.  Many of us don’t react well to commonly prescribed meds, but there are docs out there who don’t want to try six more to see which works better.  So, as patients, we must either subject ourselves to the whims of our doctors, or we must keep looking, which is a pain in itself.

I have been very fortunate with my rheumy, who has been great with questions and with giving information.  Who has done the detective work and not cast me aside because of negative results.  But my urologist is another story.  He and his nurse were disorganized and not particularly helpful.  I saw him three weeks ago and have not heard back from him; instead I got my results from CDI, who ran the ct scan.   I know I should follow-up with him to see what we do next, but frankly, I don’t want to.

So, it will be interesting to see how things go tomorrow with the dermatologist.  For once, I go in with absolutely no idea what I may hear.   But hopefully, she’s a good detective.  I mean, doctor.

2 Comments
by akajanie on April 16, 2012  •  Permalink
Posted in Auto-immune disease, chronic illness, doctors, medicine
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Posted by akajanie on April 16, 2012

http://creatinganewnormal.wordpress.com/2012/04/16/doctorpatient-relationships/

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