Posts Tagged ‘Doctors’

Insufficient

Wednesday, February 3rd, 2010

funny-pictures-cat-is-losing-energy

My doctor is a smart man.

I knew this about him, but I was reminded of it this week.  When I called him with the symptoms I described in my last blog post, I really thought it was because my liver enzymes were elevated.  Last time they were elevated, I felt about like this.  But he knew what to look for.

The tests are back, and the answer is, in fact, adrenal insufficiency.  Both my cortisol and ACTH levels are in the basement, really alarmingly low.  While this can mean something more serious, like a pituitary tumor, the most likely explanation is prednisone overuse.  I’ve done three high tapers since December.  The sad part is, I am still flaring.  So I’ve been exhausting my adrenal and pituitary glands, and it’s not even working.

For right now, the answer seems to be to finish this most recent pred taper, then begin the process of getting off the stuff.  My doctor says that we will have to be very careful about my prednisone use from now on, and he will be monitoring the adrenal situation.  I’m not looking forward to the next several weeks (or, more likely, months).  I am already beyond exhausted, and getting off pred is never a picnic, even when there isn’t this sort of problem.  I know that I can expect a rough road ahead.  And even though I’ve always had a love/hate relationship with prednisone, and some part of me is delighted to put it behind me, it’s still scary wondering how I will cope with flares without it.

There’s also the bigger issue – why is my RA out of control right now?  I’m due for a Remicade infusion in a week and we are going to increase the dosage yet again.  If this doesn’t work, it may be time to say goodbye to this drug.  I am growing concerned that I’ve developed an immunity to it – it almost seems as if it was working better at lower doses.

But for the last week or so, it’s been all about the adrenals.  Yes, my RA is flaring and there’s pain, but the adrenal thing scared the heck out of me.  For a period of several days, I knew that my cortisol was low but was waiting on the ACTH.  All sorts of scary possibilities presented themselves, like Addison’s disease (which, thankfully, I do not have).  So I’ve been tense and exhausted and moody and impossible to live with.

Anyway, we’ll see where things go from here.  I’m seeing the doctor on Monday to talk about all of this.

Oh, and by the way, I wasn’t entirely wrong – my liver enzymes ARE elevated.  But they’re not as high as they were when I was suffering from symptoms last time, and they don’t seem to be responsible for this recent bout of exhaustion.  Still, something else to think about…

Something’s Not Right…

Monday, January 25th, 2010

Just a quick check-in… I don’t really have the energy for a long blog post.  I haven’t been feeling well lately.  I’ve been unusually exhausted for about five days now – sleeping too much, fatigued during the day, unfocused and cranky, having trouble doing the simplest tasks, weak-muscled.  I realize that with RA, saying that I am fatigued is a little like saying that rain is wet.  But somehow, something feels different about this.  I’m also bruising easily.  The last time I felt this way, it turned out that my liver enzymes were elevated.  They never did go back to normal, but they came down a lot… maybe they are back up again.  Or it could be something like anemia, or something else entirely.  It could even be the RA itself – it’s a tricky little bugger, always changing – but I just feel like it’s something else.

Called the rheumatologist about this, and he wants me to come in early for my bloodwork – it was supposed to be on Friday, but he doesn’t want me to wait.  He is adding some adrenal tests.  Since I am in the middle of a high prednisone taper, my second since December, he is worried about adrenal insufficiency.  I really hope this isn’t it.

On another note, my two-year-old picked up a bug – he is throwing up today and has a high fever.  So I’m bracing myself for the same.  This could be very tricky, since I’m supposed to go in early tomorrow for the bloodwork.  (Apparently adrenal tests need to be done first thing in the morning.)  If I’m throwing up, I guess we will have to wait… and if something really is wrong, that could be bad.

Anyway, here’s hoping it’s nothing…

Wagon Train Part One: The Organizational Tools

Friday, December 4th, 2009

As promised, I’m going to be writing about my circle of wagons - the things I do (or don’t do but want to do) to help me manage life with RA. Some of these things are purely practical, some are mental, emotional or spiritual, and some are physical. I’m writing this mostly for myself, as a reminder of my own goals, but maybe some of the ideas will help you too! And I’d love to hear yours along the way.

When you are managing a chronic illness, there’s a lot of information to organize. Call me crazy, but I enjoy reading about other people’s organizational systems – I sometimes pick up new tricks, and sometimes just find validation for what I’m already doing. So here are some of the things I do.

Wagon #1: Health Journal

 Boy, did I resist this one at first.  I think it was my old friend denial again – I didn’t want to admit how major a part of my life my illness had become.  But when I was at various doctors’ offices, I had trouble remembering how long specific symptoms had been going on, how long I had been taking certain meds, etc.  I tried keeping a loose sort of log of symptoms, but found that my information was incomplete – I would often overlook or minimize things that turned out to be important.  So I finally gave in and bought this:

Health Journal

For a long time (and even now sometimes) I jokingly called it “The Hypochondriac’s Dream Journal.”  For each day, it provides two pages of space to write down all kinds of specific information, including front-and-back drawings of a human body for marking places that have pain, skin issues, etc..  My worry was that it would make me intensely focused on my symptoms, and sometimes I think it does do that.  But on the whole, it keeps me organized, and it’s been really useful for those doctor visits.  There’s a section in the back that lets me make notes about questions I want to ask my doctor, so I always go in prepared, and anything he/she asks me can easily be looked up.  It also doubles as a diet journal – there’s a whole section for recording what you eat, with blank columns so that you can choose to track whatever you wish (calories, fat, fiber, WW points, carbs, etc.).

Here’s what the inside looks like:

Health Journal inside

Since it’s designed for people with a variety of conditions, I don’t use all of it – for example, I don’t need to monitor my blood sugar.  I don’t write in it every day, either – just when things change.  Unfortunately, it’s one of the wagons I tend to fall off, especially when things are going badly.  It’s ironic – when I’m flaring, I seem to lose the will to keep this journal going, and that is EXACTLY the time when I most need to be keeping track of symptoms.  Anyway, I’ve started it up again, and ordered a new one for the new year.  I am also making it a goal to view the journal differently – instead of worrying that it will put too much focus on my symptoms, I would like to see it as a place where I can record them so I don’t have to think about them again.  Close the cover of the book and get on with my life…

Now, on to Wagon #2:  Managing my Medications

I haven’t fallen off this wagon, amazingly enough.  It’s been tricky lately because I recently had to start two new meds that must be taken twice a day on an empty stomach, while my other meds are taken twice a day with food.  Since “empty” is defined in this case as “no eating 2-3 hours before or 1 hour after taking,” this means that I now have to remember to take pills FOUR TIMES a day.  The morning dose of the new drugs is easy to handle – I just take them when I wake up and don’t eat for an hour.  The night dose, though, is no fun to schedule, especially if I end up eating dinner late. 

I’m pretty organized with my medications.  I take about 20 pills on an average day; some pills are daily, while others might be taken four times a week, once a week, or once every several weeks (like the Zyrtec I use to pre-medicate before Remicade infusions).  Then there are the “wild cards,” like the times when I have to do a pred taper or take an antibiotic.  I didn’t enjoy opening all the little bottles every day, so I decided to buy a pill kit and stock it every week.  I haven’t gone to a four-a-day one yet – I just keep the bottles for the empty-stomach pills next to my bed.  This is the pill kit I use for all the others:

Pill kit

Rheumatoid Arthritis Guy has a much cooler one, which he shows in this post.  Maybe for Christmas…  (Okay, that was a little depressing – I don’t want a pill kit for Christmas!) 

I found that all of the different pill schedules were getting confusing, so I also designed an Excel spreadsheet to help keep them straight.  I make a new spreadsheet every month – across the top are columns with the names of all the meds, and down the side are the dates.  Then I fill in the quantities of each pill for each day.  This also doubles as a medication record – at a glance, I can know exactly how many months ago I took that antibiotic, or how long I’ve been on a specific med.  I was going to show a picture of one of my spreadsheets here, but it was too big – and besides, I’d rather not post a list of my medications on the internet!  (If you really want to see one of the spreadsheets, you can ask me.)  On Saturday nights, my husband and I get out the spreadsheet and all the bottles and we stock my pill kit together - he opens the bottles for me, hands me the pills, and tells me how much of each one to put in.  Then he double-checks it for me, in case my brain fog has taken over!  Doesn’t that sound like a romantic date?  ;-)    

To help me remember to take my pills, I have recurring alarms set in my cell phone.  (Fortunately, my phone lets me store 5 different alarm times!)  The music I chose for my pill alarms is pretty, almost elfin.  Cheers me up a little, especially when my son dances to it.  Most of the time, I am home at the times when I need to take pills.  For those occasions when I have to be out, I bought myself this pretty little pill box for my purse:

Pill box

When I went onto Amazon.com to buy one, I was amazed by the incredible variety of available pill boxes.  They had them for just about every conceivable interest, and I considered ones with pianos on them, or cats, or ones with amusing photos of bad girls that double as condom holders.  In the end, I picked this one because I liked the image of the healing hands – I’m interested in things like Reiki and other energy healing modalities, and I thought it might be nice to store my pills in a place that gave them a little extra good energy!

Now for Wagon #3:  Keeping Track of Medical Expenses

This wagon could use some serious patching.  Before I had RA, this was something I never thought about.  A bill would arrive from a doctor’s office and I would pay it – simple.  I never thought to look for mistakes, and never looked at the EOBs the insurance company sent – I don’t even think I knew what they were for.  When I started developing multiple medical problems, all of this changed.  Also, we opened a Flexible Spending Account with a credit card attached, and the FSA people started asking us to provide receipts and/or EOBs to justify our expenses.  So it became important to pay attention. 

My insurance company’s website allows clients to download all of their EOBs, so I keep them in my computer and shred the paper ones that come in the mail.  I’d like to go paperless on this, but they haven’t offered that option yet.  Every Monday, I check for new EOBs, look through my inbox for new bills, and compare them.  And yes, I have started to find mistakes.  One doctor billed me twice for the same visit, one for procedures I never had, and the insurance company has occasionally failed to cover things they should.  So there can be quite a lot of work in tracking these things down.  I keep my bills, receipts, and other paperwork in an expanding file folder, which gets bigger all the time.  The FSA information is also online, so I check that too, making sure my payments have cleared and don’t require receipts.  If they do, I get them together for faxing.

I have to admit that I didn’t enjoy starting to check the EOBs.  The first time I saw my Remicade appointment listed as “chemotherapy,” I got pretty upset.  But reality has to be faced…

Even though I’ve gotten better at this, I’m still not good at keeping track of visits and remembering what happened.  My rheumatologist’s billing office is regularly MANY months behind, so by the time I get the bill for a visit, I can’t remember – did I get shots?  Have blood drawn?  Was it a Remicade visit or a regular checkup?  The bills are usually full of mistakes when I compare them to the EOBs, so it would be good to know exactly what really did happen. 

WarmSocks over at ∞ itis recently shared a snippet of the spreadsheet she uses to keep track of her medical visits.  (She has great organizational systems – she’s shared others before.)  What a good idea!  Given that I have spreadsheets for my pills, you would think I would have considered doing this before!  She keeps track of the date of visits, the provider, the purpose, charges, etc.  I’m going to borrow this and start one in the new year.  Since every insurance company handles things differently, I might modify the columns – for example, I have a PPO which covers only 90% of most procedures, so it’s important for me to have a column showing exactly what was done in the visit so I can see if it was charged accurately.  Anyway, thanks, WarmSocks! 

 I also keep copies of all of my lab reports, but have fallen apart a little on this – I designated a binder for them, but keep forgetting to put them in…

By the way, Jenni over at ChronicBabe.com offers a “Chronic Babe Toolkit” that has all kinds of useful suggestions for organizing your information, as well as a weekly “Goodie Bag” newsletter.  You can sign up for them here.