Happy September

September is turning out to be a most excellent month after a crummy summer season.  As a result, I have not been blogging as much since I am actually up and out doing things, amazing indeed. I have conquered most of the items on my “short list” of things to do except for walking the collie a mile and a half.  I am looking forward to overcoming that list item in the very near future.

Funny enough, I still wake up at night with the need to catch my breath. I think the summer totally messed up my sleep patterns, let’s hope they settle down.  Otherwise I will be getting a lot of hand piecing for my quilt and online professor time completed in the wee hours of the morning.

Went to a craft fair with my buddy Michele and did not do so bad walking around all of the exhibits and carrying the accumulating purchases.  This was a great test to pass, since I have other things that need doing if I have the endurance and the strength to walk and get them done.  It is amazing how being ill for a while can impact your overall strength and ability to deal with daily tasks, who knew?

Guess it is time to say thank-you to the Rituxan for working so very well. It will be interesting to see how this medication acts over the next several months. My only complaint is that I am definitely shedding more hair in my hairbrush than I used to.  Maybe it its time to up that folic acid daily dose!

Here’s to tomorrow being another good day!

Susan

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!

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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