Monday, January 20, 2014

Laughing at Myself

It's helpful to have a sense of humor when it comes to chronic illness.  I think I'd go nuts if I took these fibro fog antics too seriously.

Last week I was feeling terrible with an upper respiratory bug.  These illnesses are a challenge to recognize in the sea of fibromyalgia symptoms.  It wasn't until my breathing became labored and a cough appeared that I realized the additional fatigue, digestion issues and foggy focus were exasperated by the virus.

During this time, I continued to drive my children to school and on this one day, I (or we) had a great laugh.  At their school there is a car line at the back of the building.  I was sitting in the stopped traffic listening to the joyful noise of happy kids in the morning (well, two out of three isn't bad).  I remember my mind beginning to wander to what the day would bring me and carefully calculating how much energy I was beginning that particular day with.  Protocol for the car line is that the three front cars let children out and drive off then then next three drive up, drop off and so on.  As we sat, the three cars in front of me stopped and students hopped out and entered the school.  The cars in front of me drove off in single file and staying in pattern, I began to move the car ahead and continue to drive.  As I rounded the corner of the building, passing the drop off points, I heard my son gently say, "Mom?"  I politely said, "Yes?" and he replied, "You…we need to get out of the car."

As soon as they saw me smile, the laughter erupted from all four of us.

I ended up dropping them off at the side of the building and they walked around elbowing each other and laughing together.  If I were lacking a funny bone at that time, I would have missed the gratitude I felt about starting the day on a high note with my three teenagers.

Thank you for reading, forwarding and following!!!

Friday, January 17, 2014

I'm Built for Hibernation

My whole life I've struggled through the Winter months.  I always thought this time of year was difficult for me because of me.  I blamed myself for not being energetic, happy or motivated.  As I tried to correct my wrongness or weakness, I spent a lot of time observing my behaviors, what worked and what didn't work to help me be at least tolerant of the dark, cold months.  Somehow I developed a belief that there is something wrong with me because I'm unable to be myself for 5, 6 and sometimes 7 months of the year.

I'm beginning to understand that I do have extreme drops in hormone levels with vitamin D and thyroid.  Knowing this is a relief because I can take action to counteract these drops.  Also, it helps me understand that I haven't done anything wrong and there is a good chance that beating myself up, about not enjoying New England Winter months, wasn't going to make it better.

I've decided that I'm going to try to be gentle and compassionate to myself, particularly my seasonal challenges.  Instead of fighting against the decreased energy, I'll rest more.  Instead of trying to get things done when it feels as though I'm trudging through mud, I'll do only what I can do comfortably.  This means that I'll begin to not push myself so hard.

I can feel and see, over the years, the extreme difference in me from August to February.  For years, I've told people that I don't thaw out, from the Winter, until July.  I also feel that August is the only month of the year where I feel most like me; the motivated, energetic, smiling, joy filled me.  By January I feel like a lump and I dream about a cave of my own with all the food and warmth to last me through the next four month.  No…really, ask my husband.  I tell him that a warm tiny home with warm food (that I don't have to cook) would be ideal for me.

During the years of blaming myself for being so uncomfortable with Winters, a cave and an opportunity to hibernate felt like I was running away.  It felt like giving up because why would I be so different from others?  I was still comparing myself to those around me and felt less than because I wasn't like them.

I no longer feel less than.  For me, I need to slow down and use less energy. It's important for me to learn how to embrace the flow of my internal seasons.  A warmer climate, year round, may be helpful, but for now while my kids are in school, I'm taking it down a couple of notches.  I will allow myself to put some of my projects on hold and cut down on some of the regular things I do.  Now, hibernating sounds and feels like a thoughtful gift to myself.

This blog is a great tracking system for my personal seasons.  During the months when I'm feeling more like myself and not hibernating there are many more posts than the months of hibernation.

Thanks for reading, forwarding and following!!!

Thursday, January 9, 2014

Will Leading Technology Help us With Chronic Illness?

I just watched a youtube video about Watson.  Some of you may recognize this computer as the one that played the game Jeopardy on television.  It has been designed to have cognitive computing intelligence.  The video I watched, What will you do with Watson, got me thinking about technology and medicine.  In a partnership between MSK (Memorial Sloan Kettering) and IBM, they'll be using Watson in the fight against Cancer.

After watching a few videos, I began to have contrasting feelings around the concept of Watson assisting with patients.  Posing the question, what would I do with Watson, I immediately went to my experience with Fibromyalgia.  During the 11 years since I was diagnosed, I've met with numerous doctors who have not been equipped with enough information about Fibromyalgia to adequately treat me.  The go-to phrase, that I heard often was, "I don't know what to do with you."  And because they didn't know what to do with me, I suffered and went through numerous unsuccessful and expensive treatments for many years.  I often faced a crossroads of giving up or seeking out yet another doctor in the hopes that I would find help and health one day.  I persisted in the shadow of feeling as though I was a cast off or misfit because I had medical issues that are not known or misunderstood.  This made me feel invisible and unworthy of helpful treatments, compassion and attention.  If the medical specialists don't see my illness as a real illness, does that mean that it doesn't truly exist?  NO!  It exists and deserves attention.  I deserve treatment that works for me and doesn't have a catalog full of side effects (but that's a whole other blog in itself).  So, could Watson help people who are in similar situations as me?  We are the forgotten children set to wait in line until there's enough independent research done.  Then will we get our turn?  Will it be too late?  How many of us will have given up by then and lived a poor quality of life because medical research hasn't caught up with us?

For years, it was assumed that my sadness through the cold winter months was because of seasonal depression.  Although I had numerous other symptoms pointing to a thyroid issue, the blood tests showed that I was in 'normal range'.  With my new doctor, he took my symptoms into consideration at the same level of importance as my blood tests.  We discovered that thyroid treatment eliminated the sadness.  This is just one example of how medical science doesn't consider the lower edges of their bell curve or symptoms having as much importance as blood tests.  Some of us don't fit into the bell and appear to be in normal range for blood tests.  It doesn't mean we are less important or less deserving of a high quality of life.

The topic of research and data being entered into Watson brings up another question.  Who is monitoring the information getting loaded into Watson?  Will they ensure that the information is independent of the parties that fund research in order to sell more prescriptions? Is Watson working for the betterment of the patients or the engorgement of funder's bank accounts?

At this time, I'm going to assume that Watson is for the benefit of the patients, with that and lowering medical bills being the highest priorities.  In that case, Fibromyalgia patients may benefit as well.  There is new research done every day in regards to Fibro and relaying this new information to doctors takes time.  Watson could make the information available to doctors at a much faster pace.  Medical professionals will not have to take time away to go to conferences to learn about new findings in this area.  This information can be accessible in the exam room.  Watson will be capable of evaluating the symptoms, blood tests, research and treatments without emotion or stress clouding decision making.  I can see how a computer would have the ability to keep the goal of offering the opportunity of the best quality of life and health to each patient.  I feel the project of using Watson in health care, has the potential to benefit people by getting them the best knowledge of their diagnosis and treatments faster than ever before.

Although I've had poor experiences with my diagnosis' and treatments, I believe Watson will be a great improvement to how medical care is handled now.  Without my past experiences, I may not have been able to see the benefits as clearly as I see them now.  I'd let Watson analyze my medical data and I'm incredibly curious about what he'd spit out.

Thank you for reading, forwarding and following!!!

Monday, January 6, 2014

Let Me Tell You a Secret

You have very important work to do!  This is something no one else has agreed to do and only you can do it the way it is meant to be done.  You see, we are all an integral piece of the puzzle.  Just like the stem of a flower is crucially important for the beautiful yellow tulip.  Without the stem, the tulip wouldn't be a tulip.  It may not even be.

You're here for a reason and only you can uncover what that reason is.  Many people will try to convince you that they know best but they can only speculate.  There is guidance you can use along the way to find your purpose.  Watch people who are inspiring to you, listen to your intuition or go to a sweat lodge.  Whatever you choose to do to allow your gifts to unfold, start today.

I believe in you and you should too!

Thank you for reading, forwarding and following!!!