RA Ups and Downs

Rheumatoid Arthritis (RA) is one of those funny diseases.  It is an autoimmune disease that attacks the joints.  A person will appear perfectly normal and not sick in any way.

And then, a flare happens.  Swelling of affected joints can occur and the person with RA can barely get out of bed, walk, stand for a period of time, do minimal household chores, get in or out of a car, grocery shopping or other tasks that need done.  Unless a person runs their fingers over the sensitive joints in the fingers, toes etc., it hard to see or feel the bumps that are a by product of the damage.

Many RA sufferers hold jobs, teach, craft, ride bikes, dance, cook, clean and we all exercise like mad to retain motion.  Depending upon the severity of the RA, different users get relief from different medications such as Humira, Enbrel, Cimzia, Orencia, Remicade, etc.  Pain control can be predisone, Tylenol or something stronger.

Over the last six years I've learned a some best practices.

1. Exercise every day, even if it is nothing more than walking.  It helps with the motion and pain.
2. Take all medications as prescribed.
3. Rest and try to get 7-8 hours of good sleep.
4. Know when to ask for help, especially moving something, lifting something or getting something down from a shelf.
5. Meet frequently with your specialist and maintain an open complete dialogue.  The RA doctor is your newest best friend or as my granddaughter would say "besty".
6. Document when and why medications are changed including dosages.  I keep mine on a spreadsheet on my laptop.
7. Ask if there are interactions with other medications and possible side effects.
8. Participate in a national study, if possible.
9. Interact with others who have arthritis, Lupus, RA, Fibromyalgia  or other autoimmune diseases so you don't become isolated and feel alone.
10. Read everything and learn everything you can.

My challenge days normally mean, I cannot sit at my sewing machine for more than 30 minutes and only if my hands are working that day.  I want to sew up all of my quilting ideas and stash before I cannot any longer.  I've learned to read on a Kindle since holding a book is painful and awkward now.  I've learned that the heels I wore when I worked have had to find new homes, I can only get about well in flats or running shoes.  And if it zips up the back and my husband isn't around, it just isn't going to go out the door on me.  Pain management is an everyday job for someone with RA.  Some of us manage better in summer than winter.

Chevron Quilt

Quilting has always been the stress reliever for me when I was working, going to school or having an overdose of three teenagers.  I spent time deciding on what to make and for whom.  I try to choose fabrics that either have meaning for them or that I know they will enjoy.  The only times that are especially difficult are cutting things out and hand sewing binding.  I try to do those first thing in the morning when the RA isn't making joints swollen and hands hard to use.

I have a desire to create a bright quilt for my youngest grandson, age eight months.  And I wanted to use a pin off Pinterest.  It gave me the opportunity to use using several fat quarters in orange prints as well as 5 background prints.  Note, there are several Florida Gator block since the family follows Florida.

The original pin came from Kirsty @ Bonjour  http://youhadmeatbonjourblog.blogspot.fr/2012/03/tutorial-modern-chevron-baby-quilt-crib.html.  It was so beautiful, I pinned it to make one for a grandchild.

The picture below is the first six rows of a planned chevron design.  I made sure that I numbered and tagged each row as it was completed to preserve the design.  With dogs, cat and grandchildren in and out, I knew before it was all sewn together they might get messed up.

The pattern and design is quite beautiful.  Although I must have been quite mad to cut out 432 small blocks (3.5 and 3.0 blocks).

This is a handful of rows waiting to be pressed and added to the design table.

These are the last couple rows waiting to be stitched, pressed and then put on the design wall.  There are 24 rows of 18 blocks each.  If you make this, look at the tutorial that Kirsty has on her blog.  I wish that I had!  See awesome diagram under the table?  Kirsty diagrammed the quilt for visual people like me.  Awesome!

One of the major issues with RA is that everything takes more time than it used to.  I haven't been able to sew today since my hands are swollen.  I'll spend the day looking or reading magazines, working on this blog or spending time with grandchildren.  Once the Orencia kicks in, I'll be back with more pictures and an update.  Happy Quilting!

Reflections on 2011 & a knee replacement

To be honest, 2011 was not the best year for my rheumatoid arthritis (RA).  I was in pain more than I wasn't.  I had a lot of work related travel and stress which affected me negatively.

I finally took the steps  and did all my research to have my left knee replaced.  One doctor kindly remarked that my knee was trash and replacement was over due.  Having RA meant that I would be off ALL of the RA medications which made my life bearable for a minimum of eight weeks (two before and six after).  Holy cow!  That was going to be miserable.

As part of the preliminary testing, my family doctor arranged for an EMG test on my left leg to determine if there was nerve damage that would hamper the replacement or ensure that the pain in my left hip would continue after the knee replacement.  Minor nerve damage was found.  Next test was for extended allergy panel to see if the root of the pain could be there.  Ironically I found out that I was allergic to both wheat and chocolate.  The allergy to wheat threw me in the mostly gluten free lifestyle.  But, after stopping to eat anything with wheat (and the list was long), within two days I no longer had any pain in my left hip.  Discussed this undocumented feature with both my rheumatologist and my pain clinic therapist.  Nothing either had seen before but believed it could be possible.  This lead me to the book, "Wheat Belly", which talks a lot about the mutations that wheat has gone through in the desire to feed the world faster.

Met with the orthopaedic surgeon again, scheduled surgery for early December and stopped all the RA medications just mid December.  There was a family funeral and gathering during this time.  A large group for a funeral and Thanksgiving dinner, as we all clung together one last time.  The next week there was a hard snow, and I fell on my left arm breaking both forearm bones at the joints and two additional fractures.  The only major storm of the year! 

Instead of having my knee replaced, I ended up with surgery on my arm receiving a y-shaped stainless steel plate and five screws.  The day before I had surgery on my arm, a new grandson was born that I couldn't pick up or hold due to the cast on my arm. I never realized how many things I used my left hand/arm for until I could not.  It was three weeks in a cast, staples removed, three weeks in a splint, ten weeks of physical therapy and weeks of rolling arthritic flares! 

Finally in April 2012 I was able  again meet with the orthopaedic surgeon and arrange to have the knee replaced.  May 30th was my date.  I stopped all the medications two weeks before and settled in for a few weeks of pain.  Imagine my surprise that I now know the knee replacement was the best thing I've ever done for my RA.  Sure surgery and recovery have pain and discomfort.  My doctor had post surgery down to a science.  Three weeks in home physical therapy and nursing care!  Ice machine and continuous movement machine to improve the flexibility of the knee.  Awesome experience!  It's been six weeks of physical therapy and I'm walking without a limp, can walk up small flights of stairs without going one step-one step, and I can pick up and cuddle my grandchildren. 

The best part of this is that I've been able to reduce some medications by half!  I still take a weekly Orencia injection but the methoxetrate has been cut in half for the first time in six years.  I am so happy with the results.