What Would Jackie Do?

This is going to be a long one and not easy to write.  I am losing my mother to cancer.  She was diagnosed with stage IV lung cancer in early November and her battle is reaching its end.  To say I am shattered is an understatement.  She has never smoked and she beat cancer 35 years ago, having had kidney cancer while pregnant with me and not knowing it.  This post is about a woman has always been a hero to me.  This my eulogy for her.

My mom is an amazing woman.  She has spent her life working hard and loving those around her.  She grew up in a very rural setting and went away to college in an era when women's job choices were still mainly limited to nurse, teacher, or secretary.  My mom majored in Secretarial Sciences and went to work for IBM.  She was a secretary, sold Selectric typewriters to schools, and ended up teaching employees how to work as a team.  She said jobs were created for her on more than one occasion.  She also told me that she was career-focused and never planned to get married or have kids.  People who know her can't even fathom my mom not being a mom.  Luckily for me, she fell in love with a handsome man and had me.

This is the part where the first cancer showed up.  Just after I was born, the doctors discovered a tumor in one of my mom's kidneys.  She went through an emergency c-section, a biopsy, kidney removal, and radiation treatments.  And she beat it.  For 35 years she was cancer-free.  Neither a drinker, nor a smoker, my mom's only real vices are cut-glass dishes and reading. She is a giver and a nurturer.

Growing up I knew I had a great mom.  But it was my friends and hers that made it really obvious.  My mom is Donna Reed, June Cleaver, Martha Stewart (but without the nasty attitude).  My friends loved coming over because my mom always had stuff on hand to make chocolate chip cookies, and was willing to throw a batch together on a whim.  I even had someone tell me back in the day of those "WWJD" bracelets that for her it meant "What Would Jackie Do?"  I remember one friend awed by the fact that my mom would make rolls from scratch ("You can DO that?!").  If I left my jacket at home my mom would drive it to my school.  She taught me to sew and love it.  A friend described her recently as "a woman from a different time" and I think it fits and I am grateful for it.  I love that my mom taught me cooking and sewing, skills not often seen in my generation.

Since becoming a mom myself I have often wondered how my mom did everything that she did.  She worked full time until I was 12, cooked dinner almost every night, kept the house spotless, and spent time with me.  I asked her the other day how she did it all and, cancer having taken her voice away, she responded with a Bewitched nose wiggle.  She set the Mom Bar really high, even with points detracted for the "compromise haircut", aka mullet, that she talked me into in 3rd grade.  I often feel that it is hovering high over my head without hope of reaching it.  My house is a disaster, I cook maybe twice a week, and I'm so tired after working all day that I don't feel like hanging out with my kids all the time.  And now she is an awesome grandmother--baking cookies with my boys and telling them stories of her childhood.  Watching my boys tell her a final goodbye was the hardest thing I've ever done.

That's just what she has done for our family.  You also need to know how she has treated others, making them part of our family, too.  Whether a teenager in need of looking after or a grown woman needing support, my mom has been there.  She guides with patience and love, gives advice without coercion,  She has always guided gently and given encouragement to follow my heart to where I am happy--no judgement.  Those of us who have been under her wing are truly blessed.  I know a lot of people who will feel her absence.

So as I sit by her bedside, holding her hand, I think of her legacy.  She has left an imprint on many hearts and as long as people spread the love she gave, then her memory carries on.  I have promised to be gentler on myself and focus on the love I give my children instead of how cluttered my living room is.  I may not be able to do everything the way she did but if I share the love she taught me then I know she will be remembered.  Big Red, wise beyond his years, said it best this morning as I walked him to the bus stop--"When Gram goes to Heaven she will be an angel watching over us."  By her side I can feel the presence of God and my grandfather, her dad, who died of cancer when my mom was my age, and I know that Big Red is right.  She taught me to be strong, independent, and resilient.  Now I will use those qualities to carry on without her.  Without frantic calls about whether my ground beef is safe to use.  Without words of encouragement when I feel broken.  Now it is my turn to do as she taught me.  I love you, Mom.

Elephant Backpack

I posted awhile back about fatigue.  Well, that was fibro fatigue.  This week Ihave been feeling the full effect of Chronic Fatigue Syndrome and it blows my regular fatigue out of the water.  When my rheumy mentioned that the 2 issues go hand in hand I wondered how I would know the difference; now I know.  CFS has a different feel to it, the fatigue has a different quality about it.  This has been a new experience  for me and so the learning curve affects both my husband and myself. 

I asked a chronic pain friend for help explaining to Obi-John what I've been feeling.  She immediately replied with an analogy using Han Solo and carbonite.  This works well for the "unrefreshing sleep" aspect of CFS because were I to be encased in carbonite for a week I would still feel sleepy when rescued.  I'm used to feeling tired physically and maybe sleepy in the evening.  I'm even used to struggling to wake up many mornings.  But the sensation of being so sleepy that driving to work and making it through a half day there is unusual. 

I've decided that the best way to describe this past week is that it's been like wearing an elephant on my back.  A ninja elephant.  It attacked suddenly and without warning on the way to work one morning.  I felt pretty good when I got in the car with my coffee and my tunes.  My drive is about 30 minutes and by the time I got to work I could barely stand.  I almost fell getting out of my van.  I trudged into work and got winded from the effort.  I did as much desk work as I could.  I had to support myself on the counters to walk around when I came out of the office.  I moved like a turtle through molasses.  Fortunately, I only had to work until 2 that day.  I went home, crawled into my bed, and fell asleep. 

That was the worst day by far, but my friend, the ninja elephant, has been riding piggyback since then.  I've napped a couple more days and spent as much time resting as possible.  I feel like I'm letting my family down but they've been pretty understanding so far.  My patience is thin and my temper is quick.  My muscles are tied into achy knots and my joints throb periodically.  Going to bed early doesn't seem to help.  I went and had a 90-minute massage this afternoon and the masseuse said my muscles are pretty high on the ridiculous scale.  She did a lot of good, though, I feel.  Maybe the elephant went on a diet because he seems a little lighter than before.

Like I said before, this experience has been a new one for me.  I've been researching more about CFS and I have learned some interesting things.  Muscle pain and weakness, joint aches, and food sensitivities have all shown to be connected to the syndrome.  I have mixed feelings about that.  On one hand, I feel good to know that my other symptoms are part of the same issue and not a bunch of other, separate issues.  Phew!  But that means that CFS is a really nasty customer.  Like wearing an elephant backpack isn't bad enough. 

I haven't found any magical beans or other amazing cures so I suppose I have to ride this out until my pachyderm friend is ready to leave.  I'm hoping that he does.  I am holding out hope that this is not my new normal.  If it is I will find a way to cope, after tears, anger, and the other kaleidoscope of emotions that come with chronic issues.  For now, I'm watching Big Red and Monkey practice their jiu jitsu.  Gentle hugs from a very sleepy fellow FibroMIGHT.

'Cause I got to have faith, faith, faith

My family started going back to church a few months ago and part of the sermon this past Sunday struck a chord with me.  It occurred to me that a lot of my positive outlook with my fibro comes from my faith.  From faith come hope and acceptance.  I don't believe that my faith will cure my pain but it does give me the strength to cope and thrive in spite of it. 

I believe in God and I believe in prayer.  I pray that doctors and researchers use their God-given talents to find a root and a cure for fibro.  I pray for strength and I pray for relief.  I may not get my answer in the form of immediate absence of pain but what I get is a calmness of soul and the peace that comes with that.  I try not to spend time wondering "Why me?"  or feeling like God has punished me.  Bad things happen and the important part of life is how you deal with them.  I know, easier said than done.  For whatever reason I've never tended to blame God for bad things.  I don't know why they happen but I know God is there to help us through them.  Losing faith means losing hope, and that means losing the means to deal with the pain.

Going to church has become it's own form of therapy for me, I've found.  I was hesitant about returning to church for a number of years because I thought getting the boys (children and husband) ready and out the door would be nothing but more stress to deal with.  I felt like family time at home was better.  I was wrong.  My kids don't always jump for joy when it's time to get dressed for church but Big Red says he enjoys going and helps encourage his little brother.  When we get there and get settled into a pew it becomes family time.  There we sit, side by side, surrounded by the warmth and love of God and the congregation around us.  Nothing needs to be done for that hour.  We listen, we sing, and we fellowship.  Then we go out for lunch and enjoy each other's company.  And so the first part of every Sunday is spent being together and being still.  It is relaxing and recharging.  I wish we hadn't waited so long to return (Obi-John and I met in church years ago). 

I may not agree with everything that is said; I may not enjoy every hymn.  But I feel God at church and I can carry that feeling with me more easily elsewhere.  I know without a doubt that if I didn't believe in God and I didn't have faith that I would be miserable in my illness and hopeless in my pain.  I don't know where I would find the strength to seek and create happiness for myself and my family.  I would feel defeated.  So take this all for what it's worth--I have discovered that this is the ultimate secret to my positive outlook and determination to be happy.  Gentle hugs, FibroMIGHTS!

Fun with my Fitbit

Well, I found a great deal on a Fitbit Charge HR and jumped on it.  I've been wearing it for a couple of weeks now and I have to say that I'm impressed.  This is a fitness system I can do.  I'm not pushing myself to diet or build a workout regimen, I'm merely tracking what I am doing and building from there.  The biggest thing that I have learned is that 10,000 is a lot of steps!  I have always thought myself fairly active but now I see how things really are.  The big thing that I  promised myself is that I won't worry about pushing myself on rest days.  I accept whatever number of steps I get to.  On my good days, I push to my goal, even if it means walking laps in my living room for those last 500 steps. 

The other features of it are important for me, too.  I have found it interesting to monitor my heart rate and see how stress affects it.  Getting a running tally of calories burned is pretty neat.  It's encouraging to wake up and see 500 calories already burned!  I'm not counting calories in what I eat but being aware of what I burn makes me aware of my food choices.  Perhaps the best feature is the sleep tracking.  I already knew that my sleep was probably crappy since my rheumy told me at the first appointment that sleep issues and fibro are intertwined.  I know that 7 hours is my minimum for sleep.  I haven't been hitting that much lately and my chronic fatigue has been rough.  I am hoping to start tracking a pattern in my sleep cycles and restlessness to see if I can find clues to lead me to better sleep.  I don't want to rely on pills for it, though.  It will be a process and I have some ideas, though I know some of them will be tough.  My bedtime routine needs work.  I am hoping to see improvement in my daily well-being. 

My next step is to get some Fitbit buddies to work alongside and share ideas with.  The goal is a healthier lifestyle instead of quick and drastic body changes.  I figure if I'm getting better sleep, making better food choices, and staying active that the rest will fall into place.  I'm looking forward to a happy and healthy 2016.

Flight of the Fibrofly

It's been awhile since I've done a 5K because my walking partner (of the team Wobbly Walkers) moved out of state.  I couldn't resist the opportunity to join in with another friend to do a Halloween-themed event this past Sunday.  Why do I tempt fate, fatigue, and fibro by walking over 3 miles for no apparent purpose?  Because it's like giving fibro a big middle finger.  It's a way of saying, "my life isn't over and I'm not going to take this sitting down."  I always feel great after walking--all those endorphins and happy chemicals flowing through my system.  Then I get hit with the need for a nap and sore muscles for a couple of days.  I take pride in those sore muscles, though--I EARNED them.  It's nice to have a reason for the pain sometimes.  And this time I got a cool medal!

Like I said, the theme for this 5K was Halloween and costumes were encouraged.  Whatever would I be?  Then it hit me--a Fibrofly!  Since the symbol for fibro awareness is a purple ribbon with a butterfly I decided to promote awareness by dressing as a purple butterfly.  Follow my walk below:

Ready to walk!

And we're off!

Hard to tell, but this was quite a hill.

Salsa music has me in the groove!

Halfway point!

Still going strong--I'm warmed up good now.

Hahahaha, just kidding!  This was for the half-marathon folks.

Finish line!

Showing off my spiffy medal and my sexy fanny pack.

I met some awesome mermaids during the walk and the friend I went with (who is a runner) won 1st place in her age bracket!  The weather started me off in pain and weakness but I prevailed and the rain held off.  I went home, washed the purple off, and took a nap.  My calves and ankles were sore for a few days. I can't wait to do another and now I'm even looking into a 10K to really push my limits!  That will take some training but the thought of making it through is too exciting to shy away from.  Gentle hugs!

Sharing is Caring

Y'all have seen me step outside of my comfort zone so now I'm going to ask you to step out of yours.  I know a lot of people with chronic pain who keep it a secret.  They are afraid to be open about it because of the negative response they have received or the negative response that they are afraid they will receive.  Unfortunately, there are a lot of people out there who are ignorant about hidden illnesses.  And then you have the jerks who just plain refuse to believe in them--as though I've said I'm the Easter Bunny instead of having fibro.  To them I give a giant raspberry.  But that's not my focus here.

My challenge to you as a FibroMIGHT or other chronic pain warrior is to take an opportunity to let someone random know about your pain.  Maybe you get to chatting with someone in line somewhere or meet someone new at bunco.  I'm not saying to blurt it out awkwardly, but to include it if the conversation warrants.  I have had several amazing experiences with people lately because I was open about my pain.  I got the chance to enlighten a few non-pain people to the world of hidden illness and the support and encouragement that I received in return was like a big hug.  And then there's the other thing that happened...I found other pain warriors and we shared our stories.  (Cue the sappy music.)  I met a woman with RA last weekend who had some great info that has already made a difference for me!  She suggested upping my magnesium dosing to help with my anxiety and depression.  I had no clue that it was good for that so I doubled my dose and I am now only taking half a dose of my antidepressant, with the intention of weaning off of it entirely.  I would not have found this path without that lovely woman. 

I know you've been burned before.  I know you've endured nasty looks and snide comments.  All I'm asking is that you try it once over the next week.  Be open and see what happens.  I'm not going to promise miracles.  I am only saying to give it a try and hope for the best.  You never know when you'll meet someone whose words of support or personal insight will make a difference for you.  You might even end up being the one who makes a difference for someone.  Maybe you run into someone who is trying to support a newly-diagnosed loved one and struggling.  Maybe hearing your advice/experience/struggle is the connection that someone needs to know he or she is not alone, or that there's always a bit of sunshine in the rain. 

I don't know if you've noticed, but fibro doesn't pop up on the news often or show up as a plot line in tv shows.  Fibro is still lurking in the shadows and fighting long-held stigmas.  It is not "a woman thing" or "all in my head" or "a catch-all diagnosis."  The origins and cause may still be unknown but the best way to learn about something is to ask questions and to share information.  I've made it my mission to help spread understanding about my illness/disease/whatever the heck they're calling it this week.  Will you join me?

Targeting My Struggles (See what I did there? Huh? Huh?)

I did this video over a week ago but lacked the technological know-how to transfer and upload it until now.  This was a very symbolic event for me and I felt lighter and freer afterward.  My sore muscles and mild bruising were simply reminders that I can overcome my pain, guilt, and fear.  My family and friends are there to help.  Gentle hugs, friends!