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.

Senna Leaves

I truly hate what sulfasalazine does to my gut, but as a DMARD it helps my feet tremendously.  Fond as I am of remaining ambulatory, I deal with the med’s unpleasant side effect.

Dr. Synonymous has a particularly relevant post up, and it brought to mind something I read in an Open Mic comment a while back, in which Whitecoat shared a recipe:

Reminds me of an old recipe I used to use for constipation in cancer patients on opiates.

2 cups finely chopped raisins
1 cup finely chopped dates
1 cup finely chopped prunes
1 box senna leaves (finely chopped)*** (SEE FOOTNOTE)

Mix all ingredients together. Add small amounts water until mixture can be flattened out into small pan. Cut into small bars. Cover each bar in graham cracker crumbs. Freeze on cookie sheet then put frozen bars in bag in freezer. Eat them with a large glass of water.

I have a lot of ingredients in my kitchen that others have said aren’t normal staples, but senna leaves isn’t one of them.  Dates I always have.  Raisins, usually.  Prunes. Ummm – only in mid-August when they’re fresh off the tree.

Aside from the leaves and graham crackers (which I also don’t stock), this is really just a bunch of dried fruits that you don’t want to feed large quantities of to a toddler still in diapers.   I wondered if the key is just dried fruit washed down with a big glass of water.  I also wondered if it would work to swap out different ingredients, since I have many other kinds of dried fruit.  It does.  Dried cranberries, dried cherries, dried apricots… doesn’t seem to matter.

It’s pretty tasty, regardless of the reason you’re eating them.  Next time I’m going to put everything through a food processor (or at least a grinder) to change the texture.

Posting will be light, as I have two teenagers leaving for Guatemala next week and there’s still tons to do to get ready for their trip.

Senna is an herbal laxitive.  Like all herbs, it acts as a medication.  It should not be used by people taking warfarin/coumadin, digoxin/lanoxin, or diuretics.  If you are taking any medications (herbs, supplements, prescriptions…) talk to your doctor before trying senna.