Sunday, August 28, 2016

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.


Friday, August 19, 2016

Now I’ve Gone and Done It…

Took a little trip to the Colorado Department of Motor Vehicles (DMV) yesterday with paperwork in hand from the doctor authorizing a handicapped-parking placard for my car. Ugh.  I am not sure what was more upsetting – having the actual permit in hand or realizing that now I have something more in common with my 83-year-old dynamo of a mother since she has a handicapped parking permit, too.

Somehow this feels like a checkmark in the “lose” column to me.

Acquiring this parking placard came about after a recent trip to the mall and a very slow, breathless walk from the car into the mall itself. This was a not unexpected experience as the pleurisy and its annoying symptoms continue to hang around. When I visited my family practice doctor on Monday for my “pleurisy checkup”, I mentioned this laborious walk into the mall and how challenging it was to go from point A to point B when those points are not that close together. End result: the completed and doctor-approved application for this parking placard and my subsequent trip to the DMV. 

Hopefully, there will be many good days and this placard will not be necessary. I have to admit; on the bad days, being able to park closer to my objective will be a wonderful thing. Admitting the need for something like this is where it gets more complicated. Am I giving in to RA by recognizing and acting upon these cyclical physical limitations? The grownup me says “not at all” but the younger me says “loser!”  I imagine this is a situation many RA science experiments have found themselves in. How did you deal with it?

My first Rituxan infusion has resulted in much less inflammation and pain, which is a big help. My second infusion is next Thursday and I am hoping things will get even better still after that. The pleurisy’s slow disappearance is really the bigger, ongoing issue. I still have some pain on the right side and shortness of breath if I walk too fast or try to carry something heavy. Perhaps the new parking placard will be used every now and then versus used every day.

Here’s hoping tomorrow is another good day!


Thursday, August 11, 2016

An Infusion for Susan

Well, my first Rituxan infusion went off without a “hitch in it’s giddy up”. After having the infusion postponed for two weeks, I was worried it might get deferred again yesterday. However, that was not the case. After four hours hooked up to the IV, I was ready to get up and move around. Once again, I had my technology, my books, my snacks and a bottle of water neatly packed and ready to rumble. This time everything came in handy to pass the time.

The nurse started out the IV drip really slow, and treated me with all of the additional reaction drugs I was expecting – Ibuprofen, Methylprednisolone and Benadryl. After about an hour, she turned up the drip a bit as everything was going very well and I was not reacting to the Rituxan in any way that I could tell. The only eventual reaction that I had was to the Benadryl.  It made me fall asleep for about an hour or so.  Sure hope I didn’t snore!

I slept away my afternoon and stayed up too late yesterday evening as a result.  The good news is that today I really feel good.  The inflammation and pain has subsided and I can move around much more freely.  The shortness of breath and rib pain from the pleurisy is still here, though.  Let’s hope that continues to fade away over time. My second infusion is two weeks out on a Thursday and then I won’t have another for about 6 months.  Now that is an infusion schedule I can live with.

Hoping tomorrow is another good day (and I think it will be!)

Susan, the RA Science Experiment

Wednesday, August 3, 2016

The 2016 RA in America Survey

RA patients, be sure to take the 2016 RA in America Surveyfrom  While you are on their web site, have a quick look see at last year’s survey results for RA in America 2015, a very interesting read indeed.

When I was writing the opening line to this post, I wasn’t happy using the term “patients” for everyone who suffers from this chronic disease named RA.  Being the curious type, I went online to looking for a synonym that might work better. OMG.  I think I chose the best word given the other possibilities: case, inmate, subject, sufferer, victim, convalescent, emergency, invalid, outpatient, shut-in or sick person. Yow.

After you finish the survey, take a quick trip over to Carla Kienast’s blog and respond to her pop quiz about the word you used in the survey to describe your RA. The range of words describing people’s experiences and impression of RA is right on point.  

I took the survey and my one word answer decribing my RA was discouraging.  Today is a not-so-discouraging day, which makes it a good day.  

Happy Wednesday!