No Infusion for Susan

Well, on the one hand you could say that my first Rituxan infusion was quite uneventful.  Unfortunately, it was uneventful because in the end there was no infusion.  When I got dropped off on Wednesday morning, I was ready to spend the afternoon hooked up to the IV stuff.  I had my technology, my books, my snacks and a bottle of lemonade neatly packed and ready to rumble.

When I got to the doctor’s office and checked in at the desk, I stopped to ask them about resuming my methotrexate.  I have not been taking it this summer since the pleurisy episode and could not remember how to ramp the dosage back up to what it needs to be. 

That comment started the conversation about how I was feeling and what my current pleurisy symptoms were.  There are some lingering issues such as occasional shortness of breath, trouble laying down flat, and rib cage pain spasms (ouch, these really hurt!)  To make a long story short, the doctors at the practice put their collective heads together and decided that I needed more time for my lungs to heal up before having an infusion of any type. The fear is that the infusion will set me back to square one with the pleurisy, which started with a three-day hospital stay. Yuck.

So, I called my husband and he came back to fetch me.  Right now I have an appointment for the infusion in two weeks, but I am not sure if it will actually happen.  I do appreciate the rheum doc team thinking things through and making a decision.  Guess we will have round two of that situation in about ten days from now. Fingers crossed that everything works out as it should.

In the meantime, it is prednisone and painkillers as needed to address this major flare I am living with during the dark days of no biologic medications in my system.  If I wasn’t a fan of biologics before, I certainly am a fan now.  The good thing is that my flare cycles and I seem to have a variety of days in sequence – a good day where I typically overdo things, a bad day after the good day when I pay for my overdoing and then an in-between day leading to the next good day. The days themselves also have a pattern – feeling pretty good in the morning and then sliding down that slippery slope until I am really hurting by evening time.  Does anyone else have days that act like this?

So, more adventures await! 

(Couldn’t resist the post title, too funny.)

Susan

Ten Reasons Why Getting Less Sleep is Not So Bad...

As this week continues, my degree of sleep deprivation grows. I have decided to look at the positive side of “longer days, shorter nights” in order to reinforce that this situation is not always a bad thing.

Ten reasons why getting less sleep is not so bad.  Here we go.

Getting up early lets you…

1. Enjoy the cool temperatures of the early morning.

2. See the hummingbirds have breakfast at the feeder in the dark.

3. Drink the first coffee of the day, fresh from the pot.

4. Get work done before the household is awake.

5. Walk around the flower gardens and watch the bees.

Staying up late lets you…

6. Work on puzzles until you can’t write any longer.

7. Sit by the window and enjoy the nighttime breeze.

8. Snuggle up with kitty whenever you want to.

9. Take a lovely hot shower in the middle of the night.

10. Finish those long novels much more quickly.

There you have it!

Susan

Need More Sleep

Sure would be nice to sleep a full night’s sleep again.  I have been battling respiratory problems for four weeks now, and a good night of sleep is proving to be elusive if not impossible. Falling asleep at bedtime is not the problem. Staying asleep in the wee hours of the morning does not work for me.  I am able to sleep for 4 to 6 hours and then I wake up unable to breathe comfortably.   Talk about a hard “wake up call”, this would be the one.  Nothing like shortness of breath and rib pain to get you up and alert, whether you want to be or not. Add in the pain from an RA flare and you are ready to rock and roll, so to speak.

Yesterday was a high pollen day here in Colorado, and it definitely irritated my lungs throughout the day. The smoke from the many Western wildfires earlier in the month also got my undivided attention.  Guess I am one of those people they are warning when the TV or radio announcer says that the air is bad on a particular day and for people with respiratory problems to stay indoors or at least take it easy.  Wonderful.

I have been doing a lot of research on RA and sleep issues.  I have also been trying to find a way to overcome my inability to sleep at night, but to no avail. All of the recommendations for getting a good night of sleep tend to focus on falling asleep versus staying asleep until a reasonable hour. The meds I am taking may also be to blame, particularly the prednisone and the albuterol for dilating my lungs as needed.

One additional impact of my strange sleep schedule is that I am waking up my husband at these odd hours, too.  Even though he is able to go back to sleep, I know that my issues have an impact on his sleep, too. In the early days of this pleurisy thing when I was very ill, I would stay in bed and try to sit up and read or do a puzzle.  Bad idea when you are sharing your bed with another person as you are disturbing them.  Now I get up and leave the room versus trying to stay put.

This strange sleep schedule requires me to nap in the early afternoons just to get through the day.  I am certain that the nap is not the best idea, but it is the highest quality sleep I am getting right now. Not sure why it is easier to sleep a few hours in the daylight, but there you have it.

The good news is that I have gotten a lot of work done on my book revision in the wee hours of the morning, sitting here working in the kitchen with a cup of coffee. The cat likes me better, too, since he can come down for a snack in the wee hours of the morning and then head back to bed. The collie thinks I am great as he heads outside when it gets light and enjoys the cool summer morning.  Pet brownie points are pretty much my only reward.

I have also learned that the hummingbirds start feeding about an hour before the sun rises. Still hoping to see some interesting nocturnal wildlife (foxes, raccoons, porcupines, bears, bobcats), but so far no interesting animals have appeared around the house for my viewing enjoyment.

Any suggestions for extending a short night of sleep into something a bit more normal?  I would welcome them.

Here’s hoping for another good day!
Susan

Whatever Happened to “No Pain, No Gain”?

This daily pain thing is quite challenging. Right now I am in-between biologics as I try to recover from pleurisy.  Transitioning from Remicade to Rituxin is a bit intimidating, but I am willing to make the switch. These are the times when you realize just how bad the unmasked RA actually is and how much it hurts.  No fun.

I have been doing a lot of reading about pain medications and the current push to deny people in chronic pain their pain medication.  This “nanny state” perspective where everyone who takes pain medication is an addict is simply ridiculous. It is like saying that everyone who eats will continuously overeat and become overweight. The logic does not hold up for this argument. Some folks (me included) take pain medication so they can function and get through their days. Pardon me, but isn’t that what the pain medication is for? I am NOT an addict, not even close. What are these people thinking?Stay safe, stay warm, stay

Every time I read an article where some expert says that managing pain is a mental exercise or can be achieved through a change in diet, I think about zapping that person with some serious RA pain for a 24-hour period. Wonder if that zap would change their point of view? Right now I am typing at my kitchen table and ignoring how much my hands and wrists are screaming.  My preference is to take pain medication at the end of the day when things seem to be at their worst.  I may have to change my preference, though, since this transition period does not follow any rules that I can see for what hurts and when it hurts.

My mother always tells me that there is a time to be brave and a time to be practical. She is correct, especially when it comes to treating RA pain.  Of course, I should know by now that my mother is always right!

Here’s hoping tomorrow is another good day!
Susan