Sunday, July 31, 2016

Seven Things that are Tough to Do With RA

I have been thinking about all of the small and really annoying things that are difficult for me to do with RA. The little things really light me up. For me, it is much easier to address and deal with the larger issues of this chronic disease.  Funny enough, writing this post about them makes me laugh. A sense of humor is essential (see accompanying to do list graphic as an example) when you have RA, so get with the program. Here is my top seven list for today:

1. Walking the dog. Poor Hoss, he misses his daily walkies.  He gets to head out for adventures when the grandchildren are here.  Good thing he is a gentle giant on the leash, otherwise he would drag them all over the place.  Camp Bow Wow is also a godsend since he can go there for the day and play with his doggie friends.

2. Bending over to pick things up. Now here is something really annoying.  Imagine if every time you try to bend over to pick something up, the pain kicked in and you could not breathe.  I never thought I would have to catch my breath after picking up a piece of paper from the floor, who knew?

3. Going up and down the stairs. Ouch, ouch, ouch. Hold on tight and don’t fall. Enough said.

4. Weeding the flower gardens. I have discovered this year that my neglected flower gardens look better than ever.  I was able to weed a bit early in the summer but many weeds are still there.  I hate weeds in my garden but I am learning to live with them.  Good thing the flowers are so huge this year, ‘cuz you can’t see the weeds.

5. Getting to sleep. A good night’s sleep is truly a gift. Of course, you have to fall asleep AND stay asleep to achieve this lofty goal.  Some nights are better than others.  I keep telling myself that the best thing about a bad night of sleep is that I will be tired and sleep better the following night.  That cheers me up considerably!

6. Lifting, carrying and opening stuff. Danny, can you carry this upstairs for me?  Can you open this jar for me? Can you pick up this whatever and do something with it?  Ugh.  I want to pick up and carry my own stuff, thank-you. Hopefully, my family will not start charging me by the request as it would get really expensive really fast.

And my personal favorite, #7, which is (drum roll, please!)

7. Not having a drink.  A good margarita (on the rocks, please, with your best tequila, a splash of Cointreau and fresh lime juice!) would go a long way towards reconciling me to the previous 6 constraints.  It would minimize my irritation and annoyance with the “little things”, too. Unfortunately, drinking alcohol is not recommended given the medications I am taking.  Poor liver, it is getting stressed out enough and does not need the additional work.  I tell myself that I am saving my occasional drink for special occasions, and that has worked well do far.  Of course, now I need a special occasion … thoughts?

Here’s hoping that tomorrow is another good day!


Friday, July 29, 2016

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.)


Monday, July 25, 2016

Are We There Yet? Not Quite …

Here I sit on this beautiful Monday morning, counting down the days to my first Rituxan infusion on Wednesday.  Almost there, almost there. I am curious what it is like to undergo such a long infusion process after the relatively quick (2 hour) experience of Remicade infusions. I am wondering what it is like to have to have IV steroids, antihistamines and analgesics as part of the infusion process and how much they help the recipient.  I am worried about why the extra stuff is needed and a bit concerned about the possible side effects or complications of this medication.  Ah well, all questions will be answered on Wednesday this week.

Last week has been my best week since I got sick at the beginning of the summer.  Breathing is better and overall lung health is very much improved as the pleurisy continues to clear out.  If I wasn’t in a permanent RA flare sans any infusion meds in my system, I would be very chipper. 

The very best thing has been driving my car (her name is Sylvia, bestowed upon her by my mother) again and getting out and about.  Isn’t it funny how the little things mean so much?  It is great to do errands, run out for coffee, or pick up a grandchild whenever I want to or whenever required.  I saw a friend in passing yesterday and was delighted to wave to her from the window of my car. These little freedoms are easy to forget in the hubbub of daily life, but you really miss them when they are gone from your daily hubbub.

Never a dull moment.  Almost there!


Sunday, July 17, 2016

Back in the Flower Garden Again … FINALLY

Well, this week has been a much better week.  The best thing is that I find myself back in the flower gardens once again.  I have been hand-watering the flower beds and hanging plants with the hose every morning.  Guess that is my morning workout!  I do have to sit down about halfway through the process and catch my breath.  Never mind that, though, it is wonderful just to be back out doing a routine daily task every morning. I have even pulled some weeds, which is even more fun in a strange sort of way.

Per my picture and photos in previous posts, you can see that I like nasturtiums. For some reason, they grow really well here in Colorado for me and take over their pot or flower bed location on a regular basis throughout the summer. Who can resist a plant that does so well in this arid and challenging climate at 7500 feet of altitude? Too much fun.

This is a transition week for me with some things (but not too many things) to do, including jury duty.  As I continue to breathe better and move around more, my spirits rise accordingly. The RA flare still cycles from “so so” to really bad, but that was an expected outcome of the transition between biologics.  Fingers crossed that I am healthy enough for my first Rituxan infusion about two weeks from now. Looks like that will be the case unless something changes and surprises me.

I am working hard at sleeping better.  The afternoon naps are no longer allowed in the hopes I will sleep better at night.  Waking up after three or four hours of sleep and then getting back to sleep again is tough to overcome but I am trying. I read an article talking about how your body is active with oxygen during that time and that if you have lung issues you may very well awaken in distress and be unable to settle back to sleep.  I have no idea if this is really true, but as an explanation is sure fits the situation.

Funny how you miss the routine things you do as part of your life when you are feeling poorly. I suppose we all get used to those routine activities and forget that we ever missed them.  Guess that is okay, although I am going to try and remember what it was like to be seriously ill for six weeks of my summer and appreciate the little things more.

Here’s hoping tomorrow is another good day!


Monday, July 11, 2016

Getting All Those “To Dos” Done

“That's the thing about pain.... It demands to be felt.”
John Green, The Fault in Our Stars

I have things I want to do and today I am going to try to do some of them – sewing, watering flowers, grocery shopping, and straightening up certain areas of the house.  This will be a slow process, but I think I can get a few items checked off the to-do list. My project manager’s mindset and RA are definitely at odds with one another as I try to navigate my to-do list while the RA gets in the way.  Guess RA isn’t a risk in my personal project plan – dealing with RA is a certainty for the rest of my days. That makes it a 100% kind of a risk, too funny. A good friend of mine has always said there are only two types of risk – those that happen and those that do not. Boy, was he right. (Thank you, Phil!)

Wow, this coming week is my sixth week of pleurisy and respiratory issues.  That is way too long to feel so bad.  Combine the past five weeks and an extra week before when the shingles struck and that equals no fun so far this summer. Ever so slowly, the lungs are clearing up.  The smoke from the Nederland-area wildfire here in Colorado kept me up last night. That was expected, so I had a new book ready for reading. I read the whole book, too, which was actually enjoyable.  The more I read, the faster I get at reading.  I need to rejoin the library before this gets too expensive. In any case, it is nice to see these lung-related symptoms disappear, and the sooner the better.

The bigger issue is the doctor-induced RA flare that I am experiencing, ouch. There are three more weeks until my first Rituxan infusion. I am definitely counting down during this Remicade to Rituxan transition.  And as I approach my birthday this week, I feel like I am 150 years old with all these aches and pains.  It is very discouraging to wake up in the morning and be really hurting.  My expectation is that sleep is restorative, but that does not seem to be the case with rheumatoid disease. Looks like sleep obsession may also be a common issue for RA patients. Ho hum, too many things to think about, isn’t it?

Interestingly enough, I am feeling pretty upbeat about everything in spite of the pain and the shortness of breath. Must be that glass half full thing going on.  Tomorrow should be a fun day.  I am getting “sprung” from the house by two girlfriends for lunch and have a date in the evening with a handsome man.  Who could ask for anything more?

Here’s hoping tomorrow is an exceptionally good day!