Hello, where have I been?

looking

Bless me Father, for I have sinned, it has been 4 months since my last post….Ok, if you weren’t raised Catholic, you probably won’t recognize that reference to Confession (and, if you were, please don’t think I’m being blasphemous, I’m just attempting to be clever).  I haven’t posted in a long time – 4 months to be exact – and it started me wondering – where the heck have I been?  I’ve been right here, I just haven’t been “write” here, if that makes any sense.  Was it writer’s block, lack of inspiration, lack of time?  Did my creativity take a little vacation – or worse – did my creativity take a permanent vacation??  Whatever it was, I think it’s about time to find my voice again.  I’ve been thinking of possible posts and topics to tackle, including ones that are not my typical cancer and lupus related blurbs.  I’m turning 50(!!!!) this year, have 2 awesome daughters, an amazing partner of 21 years, 2 cats and my outrageous 85 year old mother and her attached at the hip rescue dog living with us, so I think I’ll be able to find more than a few things to write about. Therefore, let this be my first little baby step back into the world of witty banter and blogging, with more to come soon.  Hello, creativity, vacation time’s over, let’s get back to work.

 

Did I say 30 posts in 30 days?

compassion

So, earlier this month I set a goal for myself – to write and post something every day for 30 days.  I called it my 30 in 30 series.  I was trying to become a more disciplined writer and also to stimulate my creativity. Well, it has ended up being my 13 in 13 series instead – but, I’m ok with that.  One of the hardest things that I’ve had to learn – and have to admit, I’m still learning – is how to take it easy on myself.  I was working really hard to reach my goal of 30 in 30, and was proud of my progress.  But, the other night, I was exhausted and just staring at my computer screen, drawing a blank.  I did not feel creative or inspired, just pressured.  I felt pressure to publish my 14th post in 14 days.  And, where was that pressure coming from?  From me.  Usually, in these circumstances, I push myself, even though I don’t feel up to it, and am really hard on myself if I fall short of my expectations.  This happens a lot, especially when I’m not feeling well – which is quite often.  Having a chronic illness – Lupus – takes a lot out of me, and I often feel guilty when I can’t do as much as I want to or feel I ought to.  I feel guilty when I’m too tired to go to a birthday party with my kids on the weekend or too exhausted to help around the house.  It pains me when I’m lying down after a long day, and my daughter says, “you’re always tired, Mom.”   I’m so tired of being tired and of feeling bad about feeing bad. So, I’m working on learning to give myself a break. I need breaks – and naps. Lots and lots of naps.

compassion

Too pooped to post (#7 in my 30 in 30 series)

tired babyToday marks my 7th post in as many days.  It feels good to be meeting my creative goal of writing and posting daily.  The hardest part hasn’t been finding topics to write about, like I thought, but finding the time and energy to post my writing.  I work full-time, and some days, like today, it takes all my energy to get up, get myself and my kids ready, and make it though the day.  Fatigue is one of the most common and most debilitating symptoms of Lupus.  I came home today and went straight to bed, still in my work clothes.  I tried to post before I fell asleep, but was too pooped to post.  I slept for a few hours and only got up because I promised my family I would finish watching a movie with them.  I’m still pretty tired but wanted to make sure I wrote a little something to keep my writing streak going.  I’ll leave you with some info on Lupus and fatigue from the Lupus Foundation’s website:

How can I manage my fatigue?

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom. Fatigue can be debilitating, even to the point of forcing them to stop working.

It is unclear why extreme fatigue occurs in so many people with lupus, but the following appear to play a role:

  • Disease activity
  • Pain
  • Age
  • Current medications
  • Poor physical and mental health
  • Lack of good social support

Poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise can also be related to lupus fatigue. Before a physician can conclude that fatigue is related to these factors, he or she will rule out any “treatable” causes of fatigue such as anemia, kidney failure, or hypothyroidism.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group can help.

By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.

Tips to Help You Manage Fatigue

  • Alternate activities with periods of rest throughout the day.
  • Establish good sleep patterns.
  • Plan ahead; for example, shop for gifts throughout the year.
  • Prepare meals in advance.
  • Eat a healthy diet and exercise regularly.
  • If you smoke, stop.
  • Rest

Medically reviewed on June 20, 2013

To visit the Lupus Foundation website, please go to http://www.lupus.org/

Memories of Turandot (post #3 in my 30 in 30 challenge)

The past is always with us

I think as I pick up

An old playbill

From an evening so long ago

Notes from an aria

Float in the air around me

As I glance at the pages

Warmed by the bittersweet memories

Of love 

loss

and timeless

beauty

I wrote this poem as part of a class assignment for my Therapeutic Writing program. I was experimenting with writing in a cleaner, simpler way (my other poems are more wordy and complex). This poem was inspired by an old opera playbill from Puccini’s “Turandot.”  It’s meaningful to me because I made a special trip to Pensacola to see it with my mom in 2011.  I used to buy my parents season tickets to the Pensacola Opera until my dad passed away in 2008.  It was a bittersweet experience to be going in his place. Turandot features “Nessun Dorma”, the aria that always reminds me of my father. The music and talent were so amazing, it moved me to tears.  Then, a month after the performance, I was diagnosed with breast cancer.  So, all of these things flash before me whenever I look at the playbill.  It feels like a little snapshot of a time that holds so many different layers of meaning and feelings for me.

The Write Stuff : 30 in 30

Writing has done many things for me – it helped me cope with a difficult childhood illness, helped me earn my degrees, helped me put on paper the feelings I could not speak out loud, and it helped get me through cancer treatment.  It helps me now deal with Systemic Lupus and the prospect of my cancer returning.  It gives me, and hopefully those who read my musings, hope for the future and a way to make some sense out of the senseless things that happen.  There was a time when I guarded my writing like an overprotective parent, for fear that people would see the “real me” and run away in horror.  But, when I finally did take the risk of showing my work to others, they didn’t run – it actually brought us closer.  Little by little, I shared more of my writings with others and secretly dreamed of being a “Writer” with a capital W.  But, it wasn’t until I was diagnosed with and survived breast cancer that I was comfortable sharing my most personal insights with perfect strangers. I kept a notebook during and after treatment; writing about my thoughts and fears, as well as the surprisingly funny and good times, helped me deal with a terrifying situation.  So, I decided to share my writing with a larger audience, and started this blog.  My intentions were to have an outlet for my feelings/experiences and, hopefully, provide comfort, humor, and support to others.

Now, I’m taking another step on my writing journey and working towards becoming a Certified Journal Facilitator.  My long-term goal is to be able to teach others how to use writing as a means of expression and healing.  My short-term goal is to become more disciplined about my writing and incorporate it into my daily routine.  So, I’ve decided that I will challenge myself to write and post something every day for the next 30 days.  I would like to invite others reading this to suggest topics for me to write about, as well.  Let’s see if I’ve got the “write stuff” – wish me luck!

P.S.  I’m counting this post as #1 – only 29 more to go!

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