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

Big Day Tomorrow

It is time to visit my hair stylist and deal with this hair loss thing. I guess I am lucky that I started out with enough hair for at least two people. The problem is that I have seriously thinned out all over and one of those poor people has lost all of their hair! Isn’t it funny how we choose our hairstyles?  I have kept my hair long and straight because that is the best style with the least fuss for me. Having to change that hair style is a bit of a bummer.

I have to smile. All summer when I was so very ill my hair looked wonderful. This fall, now that I am feeling so much better my hair is falling out. There’s justice for you! The doctors are unsure about the reasons for this hair loss.  They seem to think it is not the Rituxan and Methotrexate combination, although they have prescribed a slow-release folic acid tablet for once a week in addition to the daily dose I have been taking for years.

Pretty much any actions are too little and too late for my hair. I have lost so much that even if it does come back I will be an oddity with short on top and long hair down my back. Thus, the trip to the stylist. If my hair can’t be its beautiful self, it has to be changed. Who knows, it may all fall out before this journey comes to an end! Ugh! I posted a “long ago” picture from 40 years ago just for cheering up purposes.  FYI, the “old hair” still looks (looked) pretty much the same.

Susan

The Good, the Bad and the Hair Loss

Woke up this morning to the first snow in Monument this season. Very nice. Hoss thought the cold weather and the snow was great - just what a collie would ask for. This is pretty early for a first snow.  Wonder what that says about the pending winter season? Heard on the radio yesterday that Loveland Ski Area had fired up their snow-making machines as snow started falling in the high country. In my family, it’s time to get those snowboards waxed and ready to go!

I am still feeling pretty good after my first round of Rituxan infusions in August.  The RA symptoms are quite diminished and I am able to do many things I could not do during my biologic-fee, super flare summer. Wish I could say that all of the pleurisy issues had also packed up and left, but no. The breathing stuff is slowly getting better but seems determined to hang around for the fall months. Ugh.

I have discovered that there are some interesting Rituxan side effects, at least for me. The biggest negative is that I am losing a lot of hair every day in my brush.  This has been going on for a while and I can tell that my hair is getting thinner.  Right now my hair is fairly long and it started out pretty thick, too. Good thing! I may actually have to get about 6 to 8 inches trimmed to take the weight off of my hair and make it look more full again. I am taking folic acid already for the potential hair loss from the weekly Methotrexate and hoping that this hair attrition slows down and stops soon.

I have noticed that I blog less when I am feeling better. That is a good thing.

Hope this hair loss thing slows down soon! Otherwise it is a crew cut for me. Not sure what I think about that possibility...

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