May is Arthritis Month!

You probably know someone with a form of arthritis and may not even know it.  A lot of people with arthritis don't look outwardly sick or "challenged" in any way.  Note:  we're not all disabled, we just have different things to over come daily.

To many, the perception is Grandma or Grandpa with enlarged finger joints or someone using a cane.  I have a cane, actually three, and a walking stick, a walker and crutches.  My goal every day is not to use any of them.  And I'm a grandmother.  I was diagnosed with moderate to severe Rheumatoid Arthritis and Osteoarthritis about seven years ago not long after I turned 50.  I've had the osteoarthritis in my knee since I was 16 caused by an auto accident.  One invasive surgery, 9 "scopes" and a complete knee replacement have enabled me to regain greater functioning in the knee and in life.

I am the face of arthritis.  It takes me about 45-60 minutes every day to start to function "normally".  My hands hurt and I have to exercise them to make them open and close.  My feet and ankles refuse to bend allowing me to walk "normally".  Shoulders ache so lifting and reaching is out of the question.  Exercising and medicine are my best friends.  Pain is omnipresent but controllable using meditation, exercise and medication.

The list of medications taken during this last seven years is long:  Plaquenil, Methotrexate, Humira, Enbrel, Cimzia, Mobic, prednisone and Orencia.  Unfortunately it seems that combinations of drugs eventually quit working and/or the body becomes immune to them.  The next group of drugs are infusions and generally require time in the doctor's office to have them.  A good discussion of the different classes of drugs is here:  http://www.arthritistoday.org/about-arthritis/types-of-arthritis/rheumatoid-arthritis/treatment-plan/medication-overview/ra-medications.php.

A suggestion to help your friends or family with arthritis, do a random act of kindness.  Help bring in a bag of groceries, weed  a flower bed, mow a yard, move stuff to lower shelves in a cabinet or pantry, or just hand them a hot drink to cup their hands about and chat.  You'll make a difference this month for that person.

Arthritis!

Arthritis suffers normally experience one or more types of arthritis. It's rarely a sudden onset disease and usually something that creeps in slowly like fog.  Each person reacts differently to how the disease treats them.  Most people are familiar with osteoarthritis (OA) that happens as we have accidents, strain on joints or as we age.  I started with OA after having an auto accident as a teen. 

Many elderly people has OA or rheumatism, as it used to be called.  You can see it in enlarged joints in the hands and fingers.  Excercise can alleviate some of the stiffness and pain. Play the piano, use a keyboard, write a blog etc.  all exercise the hands and keep them limber as possible.  Most days I can "beat" the arthritis and have a normal life, other days are challenge days and make me wish that life was easier.

Fall has arrived!

Looking out my sewing room window, I am reminded that fall has arrived in the Midwest.  Leaves are flying in the air looking for someplace to rest.  Flower beds have died down.  Farmers are picking the corn from the fields.  The dogs have shed once again to grow their winter coats.  It's windy and about 40 degrees.  I blanched the last of the tomatoes for the chili simmering in the crock pot. 

I realize that as a quilter, it's okay to have fabric on every shelf, in every drawer and in tubs in the closet of the sewing room.  I'll have to corral them another day.  Unfinished Objects (UFO) are giving me pause at the moment. I've become a follower of Leah Day's posts at http://www.freemotionquilting.blogspot.com/p/start-here.html.  She has a weekly UFO link up that keeps in the fore front of my mind that I have things to finish that have been set aside for something else.   I have been practicing her designs on smaller pieces of quilting and need to get the courage to try one on the crib and twin size quilts I have ready. Her tutorials are awesome and I want to purchase her book, 365 Days of free motion designs, or put it on my Christmas list.

I made a list of ten (10) projects that have been dropped/stopped for some reason.  I opened each bag/box to figure out where I was in the process and what still needed to be done.  Did I ever share that I was OCD?  If not, don't be surprised when I say that I made a list of the things not done for each of the 10 projects.

I looked at my holiday giving list (yep another list) to see if any of the UFOs were on that list too.  The ones that matched moved to a higher priority in the 1-10 numbering.  The second round of prioritization required deciding if/when finished, the quilt would have to go out for long arm services.  If yes, then they moved again to the top of the list. 

Here's the list that I have and commit to working on until finished at least once per week:

1. Finish chevron quilt and write blog (needs backing, quilting and binding)
2. Labyrinth flannel quilt for Angela (rows need to be sewn together, quilting, backing and binding)
3. Summer TX sampler & BOM  (finish two blocks and sew together)
4. Quilt tree skirt for Alexis
5. Quilt & bind twin quilt
6. Quilt bag and add straps
7. Finish cactus tree blocks (paper piecing)
8. Finish binding on Christmas braid
9. Quilt crazy quilt baby quilt
10. Finish lone star with quilting, backing & binding.

What are you doing about your UFO's?  And yes, I could have more than 10 if I pressed myself.  I just find 10 is an easy note card placed in several spots to remind me what needs to be done.  Happy sewing, enjoy fall!

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.

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.

To Medicate or Not

It's been a long 5 years since the initial flare and diagnosis of Rheumatoid arthritis.  The different medications have produced different reactions and side effects at different times.

My grandchildren have brought home from day care colds, flu and bronchial infections to share with me causing me to stop the current biologic while getting well.  Unfortunately that usually means that I never return to a therapeutic dose again before I end up moving to a new drug.  I've used all the orals, Humira and Enbrel to date.

The worst experience I ever encountered was with the new drug Cimzia.  My vision blurred, all the joints that hurt already, swelled and got worse, I lost feeling in a few fingers and couldn't straighten them.  It was several weeks after I quit the Cimzia before my vision returned to normal and my fingers worked correctly again.

Quilting and sewing has been a hobby/passion of mine for over 45 years.  It's hard to sew  or hand sew when the mind says go but the fingers say, 'no way'.  Some days I feel like I'm in a race to sew all my fabric before I cannot sew any longer.  The projects in my head are begging for completion but the physicality of it places a different reality on things.  I enjoy the good days and plan for days that aren't as good. 

It's hard to have to tell a grandchild, be careful, don't hurt 'Ama.  Come sit by me, I can't pick you up.  Let's read, will you help turn the pages?  Let's build something with blocks, but on the table not the floor.  'Ama can't sit on the floor.  Let's bake some cookies instead of walking the fields.