Beat Lupus

April 14, 2009:  I will be playing at Tattered Cover in Highlands Ranch on Sunday, April 18, at 1:00.

April 13, 2009:  Plans for the lupus fundraiser are heating up.  I will be playing my song for this fundraiser, a wine tasting event on May 3rd called “Vines of Hope”.  It’s going to be a lot of fun.  For more information go to www.lupuscolorado.org and http://www.facebook.com/#!/pages/Lupus-Foundation-of-Colorado/295959984203?ref=ts.

The Lupus Foundation of Colorado is thinking big for 2010.  The LFC provides education, awareness, and services for those living with lupus and their caregivers.  It also promotes high-standard research for the cure.  The LFC works closely with the national organizations as well, and is a huge resource to Colorado lupus patients and their families.

November 2 09 – Human Genome Sciences and GlaxoSmithKline announce positive results in second of two phase 3 trials of Benlysta ™ in systemic lupus erythematosus.  See:  http://www.hgsi.com/.

October was lupus awareness month.  All across the board, it is a very exciting time in terms of research being done to help find a cure for lupus.

Oct 23:  I am planning on visiting my Grandparents and I can’t wait.  It’s like coming home to two old friends.  Maybe ‘old’ is a bad choice of words!   :0

Oct 22: our curling team won our first game of the season.  Tremendous outing!  (can you tell I like to curl?)  The only down side was by the time we were finished, it was too late to have beers!  The bar had shut down.

Oct 19: calling all local Denver TV stations.  Thought I’d try Tom Martino TV, our local get-smart, how-to, where-to-go guru.

Oct 18 – featured at the Tattered Cover bookstore, Highlands Ranch, Colorado.  Singing and playing the piano.

Oct 15 – My article, “A Lupus Patient’s Perspective on Benlysta” receiving notable attention.  See “Book & Articles” tab for the full article.  You can also find me on www.empowher.com.  Just follow that link and search for “Regan”.

Oct 14 – excellent doctor’s visit.

Tues October 13 – I just uploaded my article regarding Benlysta, the potential new drug for the treatment of lupus.  Please see my “Book and Articles” tab for information on the mechanism and efficacy of the drug during its first trial, and information on how it might help us.  Written from a patient’s perspective.   See GlaxoSmithKline:  www.gsk.com and Human Genome Sciences:  www.hgsi.com for more information.

My lupus song, “It’s My Time”, is to be featured on the Lupus Foundation of Northern California’s website and e-magazine.  I am honored.  Please see:  www.lfnc.org Thank you!

October 8 through 11 – songwriting and listening to original music!  Michael and I both enjoy hanging out with our songwriter friends and talking about our passions and photography.

Wed October 7 – finalizing my prep for the songwriting adventure, keeping tabs on household things, and prepping for a new posting on the site – an article regarding Benlysta, the hopeful new drug for lupus patients.

Tuesday October 6 – for the first time in several days, no exercising.  I didn’t have time, was too busy – I take it back, I did do about 4 minutes of pilates while the salmon was cooking.  Had a great day working on music and talking about my songs with my Mom and a friend of mine who is helping me with ideas regarding my websites and so on.  Lovely day with great weather and not too much excitement.  A good day for my mother, who got some interesting information about her health.  Turns out she has a lesser-known version of arthritis.  Will be a challenge.  Will work together.  I got to play music for my husband after dinner, which was very lovely.

Monday evening October 5 – “Nothing ventured, nothing gained!”  says Grandpa.  Great advice!

Monday October 5 – Tab’s Birthday is here – have a great day!

I woke up feeling great today – I had a little bit of stiffness in my joints, and some fatigue.  But after stretching it out on the pilates mat for a few minutes, the pain was gone.  I continue to eat my anti-inflammatory herbs – ginger pills, and quercetin and bromelain, and I routinely eat glucosamine.  Doing some pilates while I was already down there helped too – I got my body going and now I’m fired up.  I just got a call from a local tv station – they are wondering if I want to advertise with them by appearing on Colorado & Company …. thinking about it…

Sunday October 4 2009:

Happy Birthday, Tabitha, Tomorrow.

Today I watched the Broncos win their 4th straight regular season game.  This was impressive.  I was having trouble today concentrating on anything but the loud, rancorous noise bouncing from my TV.  My husband loves watching football, and it was the least I could do to let him have a day where he could rest and enjoy himself.  However, I, like a lot of lupus patients, often need to be very focused, ie quiet, in order to do what I need to do.  And today, I was doing some writing, and was working on a friend’s potential patent project.  This requires concentration.  I am an effective person.  I just need some quiet (or at least not blaring noise) to think.  Actually, this is common to a lot of people, lupus patients and otherwise.  However, it reminded me of the times when I truly do feel lupus fog.  Waking after a restful sleep has helped me eliminate it.  But mostly, brain exercise helps me to focus.  Usually I have a routine each morning consisting of three things.  I say a quick prayer of gratitude, do some kind of brain activity, then listen to music.  This focuses me like no other method.  Usually the brain gym and listening to music is combined, as I’ll sit down at the piano and sing while I play.  That fires me up and makes me feel capable.  However, other days I want a different kind of stimulation.  My parents-in-law recently bought me a wonderful device – a portable nintendo DS video gamer with “Brain Age” installed.  It provides word scrambles, math games, and memory exercises.  One of my favorites is a “fill in the sign” game, where two numbers are shown thusly:  9 ___ 3 = 6  (and you fill in the “-” minus sign) under a time constraint.  Anyway, find something that gets your brain cooking.  Like reading a newspaper, writing a short letter, or just thinking.  My Grandpa likes to count to 100 in German.  I tried it, and I routinely get to 10.  One trick I also learned in university from an English professor was to force myself into thinking in sentences.  This was not something I’d been accustomed to, but it’s come in handy ever since.  Needless to say, there were some tense moments in the house today after I tore a strip off my sweetie pie (we have since made up).  He’s very quick to forgive.  Usually I’m not a testy person, but today the high volume of the roaring truck ads mixed with the crunch of foot ball just about drove me over the edge   Well, thank God for “forgive and forget”, and not going to bed mad.  Take care, and I’ll see you in a few short hours!
Regan