Continued from Chronic & HYSBYW

Chronic pancreatitis.  Serious.  Poor prognosis.  For three distressing weeks I dealt with that diagnosis as I waited and waited for yet another doctor’s office to schedule an appointment.

Aggravated at waiting forever to hear back from the physician to whom I’d been referred, I wrangled a different referral elsewhere.  In an effort to be thorough, I picked up disks with all my imaging studies to take to the new doctor.

Before delivering those disks, I popped them into my computer.  Not only do the disks contain images, they also contain the radiologist’s reports.  At the very top of one is a note that a correction to the report was discussed with the doctor’s PA.  The correction?  One word was omitted from the original report.  It should have read that there is NOT necrosis…

Capital letters.  NOT necrosis.  Not chronic.

This correction was dated two weeks before the doctor delivered the bad news.  He somehow didn’t see the corrected report and didn’t see the PA’s notes in my file.  He was too busy typing on his computer to look at me.  Apparently he was also too busy to look at all the reports, since the report on the second CT was even clearer.

And I’m wondering. When would I have learned this if I hadn’t looked at those computer disks and opened the radiologist’s reports?  What was that doctor thinking?  I am so angry that I spent three weeks stressed about this because he didn’t read the reports and so gave me the wrong diagnosis.  I understand that mistakes happen sometimes, but this guy just glanced at the initial report and never bothered to read it, never bothered to read the corrected report, and never bothered to so much as glance at scan number two.

While I am dismayed that the wrong diagnosis was delivered, I am relieved to know that I’m not dealing with another chronic condition.  Acute is such a nice word.

I saw a second gastroenterologist in a different hospital system.  No accusations of being a lush there.  Quite the opposite.  They read the radiology reports and told me that my case is very normal:  70% of cases of pancreatitis are women with gallstones.  That’s not the only contrast in the care they provided.  The first GI didn’t even read the reports; this second guy looked at the CT images and tracked down a radiologist for help interpreting them.

The second doctor, who I saw initially the day after I phoned for an appointment last week, is working on fitting me in to get the procedures done next week.  Next week!  Not next month or the month after.  Next week.  As a bonus, I don’t have to drive clear to Seattle.

NOT chronic.

Wanting Out

I don’t think I’ve ever elevated a comment to post-of-its-own status, but one of the comments on my previous post references a subject that deserves coverage:

We seem to be in the same boat of pain right now.  I cried all the way in to work today and I’ve cried all morning long.  I hate the painkillers because they make me too sleepy to work, but I hate the pain.  The Humira doesn’t last long enough.  The steroid shots don’t work the way they’re supposed to, and the prednisone isn’t doing the trick.  The mtx is just there. 

Sometimes I just want to die and get it over with.  Of course, I’d never do anything to make that happen, but if I keel over one day I will for sure have a DNR in place.  This is hell on earth.

This is something that isn’t talked about as much as it should be.  Being sick isn’t for sissies.

It’s not just the expense of medicine and doctor’s appointments.  It’s the frustration of going to a doctor for help and being given pills that might or might-not help, but won’t take effect for at least eight weeks. It’s being expected to live with the pain for another two or three months before a decision is made on whether or not to try a different treatment – and that treatment, too, will take a few months to kick in. It’s having no support and no idea what to expect.

It’s the time involved in obtaining treatment.  It’s the new wardrobe needed so we can dress ourselves without assistance.  It’s the loss of friends who can’t deal with reality.  It’s the pain, ongoing, with no end in sight.  It’s the fear of not being able to participate as fully as we’d like in raising our children.  It’s the anger at the curve life has thrown at us.  It’s the sense of unfairness in having our own bodies turn on us.  It’s the hopelessness in realizing that we will never get well.

It’s not surprising that thoughts turn to ways of escaping the pain.  This does NOT mean that people dealing with such thoughts are weak.

When we lose a loved one, we grieve.  It is perfectly normal to also grieve the loss of our health.  Grieving loss is normal, and just as we can recover from the death of a dear friend or loved one, we can recover from other losses in life.

It’s natural to want out, but we press on.

One of the best things we can do is to exercise.  I know, it’s hard.  Too many people use pain as an excuse (I’m one of them).  However, I tell myself, “I hurt anyway, so I might as well do it. At least then I’ll feel better.”  It works.  Exercising releases chemicals that lift our mood.

Another strategy is to get a second opinion.  If treatments aren’t working, maybe the diagnosis is wrong and someone needs to take a look at the data with a fresh set of eyes.  Or maybe the diagnosis is right, but the treatment plan needs to be adjusted.

If the normal methods of dealing with grief don’t work, maybe antidepressants would be helpful.  There are options.

Everyone deals with these issues differently.  The key is that we need to deal with them.

Suicide doesn’t solve any problems.

There is hope.

Remembering to Take Pills

It can be a challenge to remember to always take prescribed medicines.  When I first was given one prescription, it was no problem.  Adding a second was still okay, but adding a third made it a little hard to remember which pills I’d taken.

My solution was two-fold.  For my prescriptions, I’d take all three bottles down from the cupboard and set the bottles in front of me.  I’d open one bottle, take that medicine, then move the bottle off to the left.  Next I’d open the second bottle, take that medicine, and move the second bottle off to the left.  Finally, I’d open the third bottle, take the final medicine, and put everything back in the cupboard.  It worked great for the prescriptions, but I was so tired of opening bottles and swallowing pills that the other part of my solution was to stop all supplements (vitamin C, calcium…)

When these three medicines were to be taken only with morning and evening meals, the dancing-bottles system worked reasonably well.  When a mid-day dose was added, things got a bit more complicated.  I very quickly realized that I needed a way to confirm that I’d taken every dose.  With a family history of osteoporosis, I also suspected that I needed a way to get calcium back into the mix of pills I was swallowing.

It was simple enough to make a little chart and print a list of everything I needed to take.  I’d tape the list to my kitchen cupboard where my meds were stored, and use a highlighter to mark off every dose as I took it.  Problem solved.

After a while, though, opening all those bottles every day got tedious.  About that time, our superhero, RA Guy, did a post about a pill sorter he was using, and I got one to try.  It was easy to see why he liked his – I sure liked mine.  Instead of opening all those bottles daily, I only needed to open them once a week.  When I filled it the fourth week, I knew it was time to visit my friendly pharmacist again.

Nothing lasts forever, though.  Unfortunately, some of the pill compartments have started to pop open, spilling my pills all over the counter (or onto the floor, and a few times even down the sink).  If I had fewer or smaller pills, I’d buy another box like what’s wearing out.  I suspect, thought, that I need something with larger compartments.

Looking at replacement options,  I found a fairly elaborate one (pictured at right) and contacted the company selling it.  This has the features I like about my current pill-boxes (four separate compartments per day, every day is individually removable), but holds an entire month’s worth of medicine and has slightly larger compartments than what I currently have.  It also includes an alarm; if (like me) you’re sometimes tempted to skip lunch, that alarm calls you to come eat so you can take your prescriptions.  The down-side is that it takes a whole lot more space than the flat little boxes I use now.  I’ve found a local supplier, so even got to see the thing 3D.  Price is what’s holding me back right now (well, price and trying to figure out where I’d have space to put the thing – it’s not exactly inconspicuous).

Whether it’s a single-compartment box at the corner drug-store, a more elaborate box like I’m using now, or the mammoth one I’m considering next, I highly recommend a pill-box to help keep track of multiple medications.

Disclosure:  I have not receive any compensation for expressing this opinion – however, I’d be willing to accept a gift of one of these awesome looking pill boxes and giving it a workout so that I could write a thorough review after putting it through its paces.

*Sorry, don’t recall who sent me a link to the fancy pill organizer. I’d give credit if I knew.  Feel free to speak up in the comments.