Susan’s Hair Update #1

Well, my hair is still coming out at the rate of a brush full of strands a day. I went to see my stylist and he trimmed my hair up to my shoulders. I can pull it back into a stubby ponytail but no more braids for me, sigh. I thought he might cut it super short but his advice was to chop off all the length and leave it be. My pulled back hair still looks okay and it covers my scalp, so why chop it before we have to?

Isn’t it funny how there are certain aspects of our appearance that we feel define us in some way?  Mine has surely been my hair - very thick, brown, straight and quick to grow. I miss the weight of my heavy braid down my back between my shoulders. I have a feeling that when this hair loss grows back in (hopefully) it is not going to be brown anymore. The new little strands are all silvery grey. Am I having one of those dramatic hair color change episodes in my life after a seriously ill summer and some new chemo meds for the RA? Too funny.

The good news is how well the Rituxan is working for me. I am in month 4 after my first set of infusions and the RA symptoms are very much gone. I still get tired and my muscles get sore from being active again, but that is pretty normal stuff. Hopefully I can make it through the six month cycle with no flares, which puts me into early February for the next round of medication. No need for prednisone, pain meds or a cane, how good can things get?

I am also able to hand stitch again so my photo in this post is a close-up of my almost completed La Passacaglia quilt top that has been hand basted and stitched, made entirely of Liberty Tana Lawn fabrics. I was so crippled this summer that I did not sew much, but I have been playing catch up since the Rituxan has made me feel so very much better.

Here’s hoping tomorrow is another good day!
Susan

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

September is the First Annual Rheumatic Disease Awareness Month

September is the first Annual Rheumatic Disease Awareness Month (RDAM)

“Hundreds of diseases. One voice.”

The American College of Rheumatology (ACR) and its national public awareness campaign, Simple Tasks, have created Rheumatic Disease Awareness Month. ACR is the leading association representing rheumatologists and rheumatology health professionals. There are many, many conditions that fall under the rheumatic disease header, such as rheumatoid arthritis, lupus, gout, and more than 100 lesser-known conditions.

RDAM seeks to increase public understanding and awareness of the symptoms, risk factors, treatment options, personal and economic impact, and lifestyle and healthcare challenges associated with rheumatic diseases. September provides an opportunity for concerned individuals and groups to advocate for the health and wellbeing of those living with rheumatic disease (like me!) and to advance healthcare policies that help patients access safe, affordable, and effective healthcare.

As the “RA Science Experiment”, I am trying in my own small way to raise awareness about my rheumatic disease. Not many people fully understand RA symptoms and its complications, speaking together as one voice, we can change that during RDAM 2016.

Check out the ACR’s Simple Tasks website (www.SimpleTasks.org) and watch for the official RDAM 2016 hashtag, #RDAM. You can also link with the ACR on Facebook.  

Susan