Tag Archives: writing

october_novemberOctober is finally over.  It’s been a whirlwind of activity and unexpected challenges, and I’m glad to have it behind us.

The move is done except for unpacking boxes, and we’re determined to not let that linger too long.  We’re taking our time to carefully choose the furniture and decor items we want in our space and so far we’re very happy with our choices in feathering our nest.  Our new adjustable bed is fantastic, and while I’m still in the adjustment period for it, I think it will be very good for my chronic conditions.

The Bell’s Palsy has mostly resolved, thank goodness.  My doctor can still detect some very slight droop in the eye and mouth, I still have to be careful when applying makeup or moisturizer to that eye because it doesn’t close all the way unless the other eye is also closed.  But my speech is normal again, and my vision is almost back to normal.  The eye gets twitchy sometimes, but that’s normal due to the nerve regenerating.

nanowrimo I had said I was going to start doing NaNoWriMo (National Novel Writing Month) once I was done with grad school.  Last year I was having flares of my conditions too bad to manage to keep up with the writing.  This year I am coming off a really stressful period and just feel like it’s too much to put myself under the pressure of a deadline right now.  I think it’s the better part of valor to decline yet again.  I will have opportunities for NaNoWriMo camps in the spring and again next November.

Besides, it’s not like I’m going to stop being creative.  I am going to work to start putting more content here on my blog on a more regular schedule.  Now that I can speak normally again, I also want to start work on a project I’ve had in mind for several months which is a YouTube channel/vlog focusing on awareness of chronic illness and disability.  I don’t expect to get rich, but I hope to get enough of a following to raise awareness of chronic illness, and the challenges we Spoonies face.  Especially we Spoonies who are “well enough” to work, but there are trade-offs in other parts of our lives to carry it off.  If I can manage to get enough followers and supporters to justify upgrading my equipment beyond my new iPhone (there’s another story in that) and my iPad, that’ll be cool too.  So I’m working on several initial scripts for that endeavor, not sure when I’ll have enough material to feel comfortable starting that off, but I’m hoping by Thanksgiving and definitely before Christmas.

So ‘bye for now, and be well.

When I sat down to write my surgiversary update, I realized it had been over six months since my last post. I had planned at the first of the year to start posting updates at least weekly, if not more often. The best laid plans, and all that. Spoonie life makes it hard to juggle all the things you want to do. Energy reserves are limited, and even though sitting down and writing a few paragraphs doesn’t seem like it should take that much energy, even just remembering that you were going to do it, or getting up to get the keyboard for the iPad if you manage to remember, sometimes is too much.

I continue to love my job. I have been working on some exciting technology projects to expand healthcare interactions for patients into the digital space, which is super exciting. I also have an opportunity to move into an area of data governance which is actually a personal area of interest, so that will be exciting for me. Most people find it dull and tedious but I’m not most people. Working full-time means I have very little energy left for the rest of my life, and it’s hard reconciling that with my goals and aspirations. But it’s the reality for so many of us Spoonies. I keep reminding myself how lucky I am to be able to work full time and support my family because many Spoonies struggle with the basic necessities and access to healthcare because they can’t work or can’t work full-time.

As much as I wanted my focus word for the year to be “calm” it doesn't appear that is to be my fate for 2019. A few months ago, Hubby and I were vacationing with some very good friends and discussing challenges we’re facing, and it became ridiculously obvious that the answer to many of our challenges is to sell our house and move closer to friends, work, and other interests and rent at least for a few years. This means that we now are throwing ourselves into decluttering, packing, and house repairs so that we can get our house on the market and start looking for a rental in our target area. Not “calm” at all! Calm may be on the other side of this, but it sure isn’t here and now.

Health-wise, things seem to be settling down. (Superstitiously knocking on the nearest wood item available.) I have found a new rheumatologist, and I really like her. She’s young and isn’t blowing off my increased pain with the fibromyalgia. She repeated a lot of lab work that had been done several years ago and not repeated since, and has confirmed that the psoriatic arthritis is indeed still in remission. This is good news, because while I’m still in pain, it means that there’s likely no joint damage being done at this time. She’s given me some things to try to reduce the pain levels, and admonished me to stop avoiding the mild opioids I’ve been prescribed if I need them in order to do the mild exercising we both know I need in order to reduce the fibro pain.

So that's my life right now… working, recovering, working some more, and trying to get the house sorted, packed, and market ready when I can. Hoping to come up for air sometime soon.

lifechanges

Wow. Over a month since I've posted anything. I plead life changes, grad school, work, and illness as excuses. Life is beginning to look a LOT different than it did pre-op. I'll post more on that later.

It's interesting to me how we define moments as life-changing. Life before this event and life after this event. There are the huge ones that everyone remembers as a frozen snapshot in time: JFK assassination, Reagan shooting, Challenger explosion, 9/11 attacks. The "where were you?" moments. We all have stories to share about where we were when we heard, how it's changed our life or society since then.

But then there are the personal ones. Some tragic, more that are joyful (hopefully), but each one marking a point in life where everything changed. Moving to another state, life-changing injuries or illness, graduation, marriage, ending relationships, forming new relationships, encountering the death of loved ones. Events that change the trajectory of your life, for better or worse.

It seems like I've had nothing but changes over the last few years. Back to school 3 times. 4 new jobs. Divorce. Remarriage. Chronic illness diagnosis. Weight loss surgery. Whew, and that's only the last 5 years. Needless to say, my life doesn't look anything like it did five years ago. I live in the same house and Munchkin is a constant as are friends, family, and the remaining cats. Nothing else is the same, and that's a good thing.

Some of these are certainly life changing moments. A clear line in the sand of time where something stopped or started or both. But many of them blend in like a wave of tiny changes that go almost unnoticed until in a moment of retrospection you look back and see how far you actually got moved.

I've been - mostly - a "go with the flow" kind of person my whole life. Especially regarding my career. Opportunities presented themselves, and even if it meant a complete shift from the prior plan I embraced those opportunities. That's resulted in an odd patchwork of job history and an interesting mix of skills. It's served me well overall. It meant that when a chronic illness diagnosis required me to leave bedside care, I only experienced some regret but no panic as I made the decision to move into Informatics. When changes come, I tend to roll with them.

The only things I tend to really regret are opportunities I've missed. Like when I was too scared as a 19-year-old to take a Paramedic job in Alaska (even though I "had people there") because it was so far from home. And leaving bedside care and a future as a nurse practitioner because I really didn't have a choice. I don't carry around a lot of regrets about life choices, and I think it may be because I did embrace opportunities and change when they came.

Since this has apparently become a "Wear Sunscreen" kind of post, I'll close with my advice for what it's worth. (And if you've never read "Wear Sunscreen", click the linky thing and read it now.)

Embrace the opportunities that come to you. Take the job that means moving across the country. Go to school (or even back to school) for the thing you've always wanted to be but didn't think you could. Go out on the blind date (but have a safe call set up). Travel every chance you get. Take that dance class that requires a public performance at the end. Life is about change, so buckle up for the ride and enjoy it.

There’s nothing like sitting down to a fresh, clean piece of paper and starting a project.  Everything is possible, the world is at your feet.  Once a mark is made, it’s a choice, and the project will never be pristine again.

In an insomnia-fueled late night introspective fit, I decided to wipe all my blogs and internet projects clean and start over.  I’ve had at least one web presence on the internet since the late 1990’s, and all of them were full of junk.  In my offline world, I’m engaged in a long term project to de-clutter, clean, and streamline my life.  My physical space is getting cleaned out, I’m reducing the amount of crap I’m dragging around.  It seemed only fitting that I’d do the same for my online life.

So here I sit at my fresh, new, clean blog and think… what exactly am I trying to accomplish here, what am I trying to say?  What will be my first mark on the clean page, my first choice down this new path?

I can’t predict where this new start will end up, but that’s what life is all about, right?

Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”  -- Hunter S. Thompson