Riding the Rituxan Express

My second Rituxan infusion last Thursday was an express trip to hopefully feeling better.  Since the initial infusion two weeks ago was uneventful and I did not react to the medication in any way, this second infusion was on the proverbial “fast track”.  The drip speed was periodically adjusted upwards over the three hours that it took to get all that stuff into me.  As long as I felt okay (no headache or other odd happenings), we were going to get this infusion done in the most efficient manner possible. Amazing and a bit surreal, I must admit.

Once again, the methylprednisolone kept me up very late. My hands were not hurting so I was able to do a lot of paper piecing on my current quilt. Seems like the pattern is to sleep away the afternoon after the infusion and then be up late in to the night.  The rheumatologist is very optimistic about this new medication and my reaction to the first infusion.  Two months should be enough time to tell just how well (or not well) Rituxan works for me. So far, so good for this RA science experiment.

I have a short list of things I am looking forward to being able to do in the short term.  I have been unable to do so many things this summer, I am happy to see fall beginning as the nights cool off here and the bushes get their berries.  For me, this summer of pain and discomfort is one to let go and forget about.

My “want to do” list includes:

  1. Weeding and planting in my flower gardens
  2. Paper-piecing rosettes on my quilt project  
  3. Walking the dog every day around the ponds (a distance of 1.5 miles)
  4. Taking the stairs with no shortness of breath
  5. Carrying in the groceries myself, more than one bag at a time
  6. Walking, walking, walking
  7. Sleeping better and longer every night 

Not too ambitious of a list, is it?  I sure hope I can achieve these things that I used to take for granted.

The best thing is that I may be able to get my hair trimmed.  When I got sick, I decided I would not have it cut until I was feeling better.  Let’s hope I get there soon since my hair is almost to my waist – it is kind of like wearing a carpet down your back. While the rest of me took a beating from the pleurisy and the RA symptoms this summer, my hair was flourishing and grew like crazy. At least it didn’t turn white or anything. Go figure.

Susan

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!

Susan

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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!

Susan

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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!

Susan

Gardening or Sitting Still?

Happy Monday! I woke up this morning up at 4 am unable to breathe, so I came downstairs and started working on my textbook revision at the kitchen table. I am still amazed at how gravity and I can disagree. Seems like I can sleep about 5 or 6 hours max with this pleurisy thing, and then it is time to be upright for a while. This is an absolute requirement versus an optional requirement.  Plus it would be rude to lay there gasping for breath and wake up my soundly sleeping husband. I know I am his major sleep disruptor these days, so I try to keep the disruptions to a minimum. It can’t be easy being on the other side of this RA equation. The scope of the challenges this chronic disease brings into your family life is remarkably large and complex.

Seems like this is the absolute slowest recovery ever. I can’t walk more than 10 steps without having to pause and catch my breath. I can’t bend over to pick things up. Going down the stairs is okay but coming back up is a challenge. Wonder how we will know when this is over with and the Rituxan infusions can start without additional risks to my health and especially to my lungs? This could take a while. Pleurisy plus major RA flares equals no fun. I am officially an invalid for the foreseeable future.  No fun and actually a pretty lonely existence when you are used to being out and about.

As I sit here typing, I find myself wanting to go outside and work in the flower gardens. Danny has been watering and weeding for me in addition to his other yard chores, such a sweet man. Guess I am lucky that my Colorado flower beds are mature and forgiving of my neglect. My best friend Peggy came for a visit with the “sicky” and spent time planting some new Bachelor Button plants for me where the voles ate everything during the winter. Alas, no gardening for me today or probably in the foreseeable future. I can’t bend over and breathe well at the same time, at least not yet.

Here’s hoping for another good day!
Susan