Lap blanket

My parents live in a fairly rural area of central California.  Not so rural that you can't see the neighbors, but the people around the corner keep sheep and alpacas and up the road is a heard of long horn cattle.  The town is more like a village, and they live in what passes for a suburb.

One of their neighbors, a couple just a few years older than they are, have become good friends, particularly of my dad.  The husband helped quite a lot with my post-wedding brunch, makes amazing cinnamon walnut bread at the holidays, and was just diagnosed with an aggressive form of lung cancer.

There's not much any of us can do to help, he's undergoing treatment and seems to be in good spirits.  But wanting to offer what comfort I can from so far away, I decided to make him a lap quilt he can take with him to his treatments or just use at home.  A good friend of mine and fellow quilter on this side of the country is going through the same thing with her dad, and she very kindly shared some of the scraps from his quilt to supplement what I already had for my project.  We both like the continuity of that, somehow it seems as though they will both benefit from the prayers and well wishes directed at the other.

I decided to keep things fairly simple as I want to get this quilt sent out as quickly as I can.  Starting with a basic strip quilt idea, I added in some scrappy log cabin squares, strewn across a strip ground.  This was my first attempt at log cabin and I think the results were quite good.  They are kind of fun to do to, even though I felt like I was doing a whole lot of ironing.  I went with blue and green batiks for the strips, partly because that's what I had, but they seems like healing, calm colors.  The log cabin squares are done in darker shades with bits of brown thrown in, sort of like stepping stones in a stream.

Today I will quilt and bind the blanket and hopefully be able to get it mailed off by Wednesday.

Hoping for the best

As I mentioned in my last post, I was diagnosed with fibromyalgia last year.  This came after nearly 5 years of unexplained medical issues (one of mt neurologists used the phrase "perplexing constellation of symptoms," not the best thing to hear).  I've had severe migraines, memory loss, tremors, aphasia, fatigue and a marked loss of cognitive function in addition to muscle and joint pains.  Some days are good, some days are bad, most days are some combination of both.

I've been learning to cope with all of this in the last year, trying to adjust to what is my "new normal" and learn how to get the most function out of each day.  I'm making progress, but still have moments where I mourn deeply for what I've lost.  Acceptance is coming in bits, the low times are less frequent, but it's still scary when I have a bad lapse.

To make things even more interesting, I've had consistent issues getting one of my prescriptions refilled in a timely manner for the last 8 months or so.  I've been taking cymbalta since last January, to help with the fibro and hopefully keep all of my symptoms on an even keel.  It mostly works but comes with some less than great side effects and EXTREMELY bad withdrawal problems when I miss or am late on a dose.  Because of this I've made the decision to stop taking this stuff.  I'll be weening off it for the next 6 weeks or so.

So here is where I need some help.  If I am acting flaky or spacey, if I don't follow through on something we talk about, please don't take it personally.  In all likelihood I don't remember the conversation or am having trouble finding my words.  I might act oddly or do some strange things, I assure you it's a lot more disturbing for me than it is for you.  I will eventually be ok, but I might need to be reminded of that and I could probably use a hug.

I just need some extra patience right now and possibly some help operating heavy equipment  :)

Carnival Rides

It's been a mad, crazy year since I last posted.  A lot has changed, mostly for the better, but as with all change it was a rough process.

Shortly after my last post I was diagnosed with fibromyalgia.  This was good news.  For the last 5 years or so I'd been in pain and having strange neurological symptoms that my doctors just couldn't figure out.  The diagnosis hasn't really changed any of that, except now I am on meds that help regulate and highs and lows a little better.  Getting that sorted out was no picnic, there is a space or about 6 weeks where I remember at most 3 days, the rest is a blur of confusion and not being able to figure out how to work my phone (or anything else for that matter).

In the midst of all that, my marriage finally fell apart and I moved out.  Not an easy thing to do when one can't work, is tripping from medication adjustments, and has no steady income of ones own.  But I'm adjusting and feeling much better and slowly starting to figure things out.

The trick seems to be managing my own expectations, and those of the people around me.  I can't do all the things I used to, most annoyingly I never know from day to do what I will be able to do.  Focusing instead on what I can do and letting the rest go with something like grace is the only way to get through the day.  Explaining all of this to people is the hardest (and most exhausting) part.

One of the better explanations out there is the Spoon Theory.  It works pretty well but I've found a better way for me to explain is to equate my day with a day at the carnival, you know the ones where you get ride tickets?  Usually at these things you can either buy a bunch of ride tickets or an all-access wrist band.  I used to have a wrist band.  Now, I get tickets.  Some tasks take one ticket, some take four.  It take eight or nine just for the basic functions of life, like getting dressed, showered, making meals, etc.  Anything else I do, I have to budget for since I never quite know how many tickets I will get each day.  I have to plan what to do with my "extra" tickets.  Laundry?  That's 3 a load.  Doctors appointment? Groceries?  Anywhere from 2 to 5.  Actually get some paying work done?  The sky is the limit.  Social time?  That all depends on what you want to do.   You can see the problem if I wake up with just 15 tickets for the day.

On the upside, I'm regulating myself better so I don't have such wild swings in energy and pain levels most days.  I'm getting better at maintaining a little bit of energy reserve so I'm not still a mess tomorrow because I overdid it today.  I can plan a little better, and have eliminated a lot of stress and anxiety from my environment.  But the hardest thing, the thing that takes the most tickets, is trying to explain all this to new people or old friends who just don't get it.  It's not that I don't want to go to dinner or play pool, or travel or go dancing, it's just that I don't have enough tickets for that ride today.  I might tomorrow, or I might next week, but I have to plan for it and rest up so I've got the best chance of a nice, thick envelope of tickets that morning.