Category Archives: Health

Recovery

I got back from Interweave Knitting Lab on Monday night (late flight) and jumped right into family stuff (parent teacher conferences this week, debate club, theater stuff) and also into business stuff (full day seminar on starting a small biz in MN on Thursday offered by St. Paul Score) and feel as though I wasn’t able to catch my breath until Saturday.

I think, after almost 4 years of officially having Fibromyalgia, I’m finally getting a good grip on the strategies for holding energy. The spoons analogy helps me explain this to folks who haven’t suffered this kind of ongoing exhaustion/pain issue.

Even more helpful, at least for a tech head like me, is the iPad battery theory.

With iOS7, Apple’s made a lot of changes in the operating system of the iPad. One aspect I read about often is the low battery problem – the fact that iOS7 tends to run down the batter faster than previous operating systems.

I feel one with my iPad.

My battery runs down SO quickly now. Things I used to not worry about at all are now constantly on my mind. Can I get through this day? Can I lift this suitcase into the overhead compartment? Can I walk all the way down the corridor in this hotel/airport/convention center? Is my exhaustion making me limp/shake/act snappish?

The only way to fight this is to NOT fight it. Fighting takes strength and energy, so instead of fighting I find strategies to make peace with my energy levels, do all I can to raise them, and work hard to NOT waste energy doing all that fun stuff I used to take for granted.

No more going out for drinks with friends in the evening while I teach.

No more days of NOT exercising – I must do something EVERY day if I want to be able to move the next day!

No more eating poorly – I must have good protein, vegs, and not too much sugar because these things affect my energy levels tremendously.

No more ‘doing it all myself’ – I have to ask friends, students, family members for help. Recently at Interweave Knitting Lab my friend Adria stayed by my side to get me to and from each class, and her help was immeasurable. I realized on Sunday in my last class when I actually felt ENERGETIC instead of EXHAUSTED that one huge reason for that difference was Adria’s help – she’s wonderful.

If you don’t hear from me for a few days, generally the reason is that I’m resting a bit, and that I have to put my energy into something other than my blog for the day.

I really miss writing in my blog almost every day, I used to find myself filing away many things that happened to me during the day as ‘blog fodder’ and found great joy and comfort in the comments of my readers.  But the truth is, I just can’t write as often as I used to – which is cool – and I’m grateful to my readers for their kindness and understanding about this change!

Coming up is a big week – I have some great stuff to do, lots of physical work, a few huge submissions to get through and some family stuff (all good) to deal with. I am SO fortunate that I have a good friend/partner in crime to help me with a lot of the business stuff (thank you Kathleen!) and even MORE fortunate that I have an amazing husband and great kids who also help.

So look for some great news this week, a really TERRIFIC book giveaway, and – if all goes well – at least three nice blog posts!

Now go out and enjoy this great November Sunday! Thank a veteran (and their family!) and spend some time reflecting on how much better this nation could treat our warriors. And take some time to rest up – it’s a big week ahead!

And me? I need to get my bike ONTO the trainer so I can ride indoors every day until Spring comes. Gerry very kindly wrestled it downstairs to the basement for me (where my office is) – now it’s up to ME to get it on the trainer and RIDE it!

Giving Joy

I made a documentary! It’s on the subject of Care Giving, and it’s called Giving Joy.

This summer I was accepted into a program at our local public access TV network (SPNN) called DocU, where we spent 15 weeks learning how to plan, shoot, edit and craft a short, 10 minute documentary.

It’s in a competition right now, and if you’d care to vote for it, I’d be thrilled!

I loved this process. It was exhilarating and exciting, and I feel like I’ve had a door opened into a whole new world.

No surprise, my favorite part was the planning and the editing. The actual shooting was fun, but physically a bit rough some days.

Which brings me to a different subject.

I know I’ve been low profile this Summer. I feel that I’m hermitizing myself — trying not to be in public more than I need to — and of course, that’s not healthy.

That’s one reason the DocU program was so great this Summer,
it was a place I needed to be once a week to see other people
(and it was a reason to get out into the world for shooting).

I’d hesitated to write this, but I feel that I’m slowly disappearing in some ways, and I wanted to explain that it’s not permanent. I just need to figure out how to get on top of the continuing pain from my Fibromyalgia, which wreaks havoc both physically and emotionally.

I felt like a fraud some days when making my documentary, because my health’s been so iffy this Summer that there were days that Gerry was the caregiver, and I was the patient!  I don’t know exactly what is changing, but I do know that my pain levels are increasing and I don’t feel able to control them with biking alone, as I have for 3 years.

I’ve been experimenting with different ride lengths, riding at different times of day, in different temperatures, and it seems that riding between 10-20 miles on a 70-85F degree day is best for me if I want to try to control my pain levels (Yesterday I rode 30 miles, and discovered that it might be a bit far for me).

But bike riding’s not doing the trick it has  for the past few years, I’ve been shaking.

In fact, a few times this Summer I’ve gotten the ‘shakes’ so badly while riding I got off the bike and rested a bit until my hands calmed down. I’ve been ‘shaking’ in various ways for years, usually while I’m yawning or sneezing, but now it’s spilled into other moments, too, and has spread to beyond my hands.

I talked about this shaking with my rheumatologist, and a few years ago all kinds of tests were done (brain scans, other cool things) but there seemed to be no indication of Parkinsons (with which my Aunt Wanda suffered for many years).

Two weekends ago I began shaking while with a friend and our daughters in public, and aside from being humiliating, it was a bit terrifying.

So new appointments are being made, perhaps new meds will be tried. I love my bike, but it’s not doing for me what I have needed for so long (but I’ll never give it up!)

As I write this I realize how damned lucky I truly am! I have a source of income which allows me to work at my own pace when I feel strong, and to rest when I feel that’s necessary. I have a few good designs coming out in the next few weeks (more blogging about them in the next few days!) and, of course, there’s always History on Two Needles (more news about THAT coming up, too!)

I’ve cut down on my teaching because, well, I tire easily and I shake more when I’m exhausted. That doesn’t mean I’m NOT teaching (I’ll be at Interweave Knit Lab in San Mateo in early Nov 1-4) but I’ve definitely cut down on the extended gig trips that I feel may have contributed to my initial Fibromyalgia.

Pain Identifies Me

It’s been a crazy, pain-filled few days and I don’t know why.

I’ve been living a relatively clean life; no gluten, biking as much as I can (in the heat), keeping the sweets & dairy to a minimum.  But the pain has been rather intense.

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Me, ostensibly working, in my sky chair in the backyard. Why do I always look drunk?

I’m beginning to wonder if one of the triggers for my Fibromyalgia may be heat? Who knows. Almost 4 years in and I’m still learning stuff.

When I was in my 20’s, my 30’s, even my 40’s, I had SO much more energy.

I could do anything – and many days I did!  I could bring home the bacon, fry it up in the pain, wash the pain (and the whole kitchen) PAINT the kitchen, remodel the kitchen, and THEN make you feel like a ma-a-a-an!

But I am utterly exhausted almost every day.  Physically, mentally, emotionally.

I am just drained. And I hate it.

Recently we spent a weekend with some friends, and the fact of my constant exhaustion was brought home when I needed to take not ONE but TWO naps one day. This is the kind of thing I can ignore within my own family, but it becomes noticeable (and noticed) when other folks are around.

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The sleeping doxy

The dogs were thrilled, both Jasper and another guest’s sweet little doxy crawled into bed with me, and we three tired pups slept the afternoon away.

I apologize if I sound whiney –  I didn’t used to be so worried about whining, but a few years ago a rather nasty blog commented on how odd it was that I was always “moaning about my health, but could ride my bike to the top of the Wallace monument”  Yeah, whatever. 

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My bike by a tiny Free Library in St. Paul

Some folks are always going to be nasty about something, and it shouldn’t matter.  Except the comment is trapped in my head like a wasp against a window and it buzzes every time the pain overwhelms. me.

 

I know my exhaustion comes from pain. Pain EATS energy for breakfast, then asks for more for lunch. If no energy is forthcoming, pain goes on a rampage and sets the garage on fire before fleeing the scene. Pain is a perp.

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My bike at the Lyndale Rose Garden

And, as I’ve related ad nauseam, I deal with the pain with my bike, with yoga (in the winter) and with stretching.

Usually I can beat the pain back.

Or at least I can reason with it and
distract it while I make my escape.

 

So today I took a pain pill – not something I do regularly (perhaps I should take one prophylactically when I know it’s going to be so hot) – and I’m feeling on top of the world right now.  Where’s that frying pan…?

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I offered a “Heat Wave” discount during my class last night, the current temp minus my ideal temp of 70º = 29% off on my books!

DARN KNIT ANYWAY

Last night I taught a lace class at Darn Knit Anyway, which is SUCH a lovely yarn shop in Stillwater, MN!  I love to visit there, I always find inspiration in the choice of yarns they carry (they have a good eye – or perhaps it’s that we share the same taste!)

The class was smallish, but that allowed me to really dig into the theory of lace, why stitches move the way they do, how to create scallops and waves in the edges of your work (intentionally!) and different ways to make a decrease / increase.  Overall, it was a very good class (and I sold a few books, too!)

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St. Paul Cathedral at 9pm, on my bike ride home from SPNN

I’m excited to be teaching the same class next Saturday, this time the class is full, 16 folks at last count.  Perhaps they’ll have me back to teach classes on some other topics, that would be great!

All in all, a really terrific experience on a hot, hot day!

My plans on this steamy day are to bike downtown, sit at an air conditioned Caribou Coffee and knit, then head over to SPNN and edit from 4-9 (it’s ALWAYS cool in the edit suite!)

Yes, I’m working on a project for a documentary class I’m taking at SPNN (St. Paul Neighborhood Network), our local public access station.  It’s going very well, and I’m LOVING the editing portion.

More on this later as it transpires…

Desperately Seeking Groove

I’m certain it’s no secret to anyone who reads my blog or knows me that I’ve been battling with some pretty strong stuff for a while.

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Gerry & Jasper, BFFs

It’s not just Gerry – overall he’s doing well, his cancer return is being handled by Revlimid & Dex and we putter along as if we’re retired folks. He’s great on his own for short periods, but I do feel that I need to be here with him most of the time.

And it’s not just my Fibro – I deal with it, I suffer through it when the flare ups come (more often in Winter) and I hesitate to write about it much because, well, who needs the nasty comments about me ‘moaning about my health’

Keep those cards and letters coming folks!

I’m not certain exactly what’s been up, but I’ve felt like a hermit, a pariah, adrift and alone in the midsts of friends.

I know I’m not, I know exactly how fortunate I am, but handling the demons of self-doubt has been very difficult this past year. I question everything I do, I fear that I’m past any usefulness.

Yes, I realize what I’ve just written is a little dumb, and self pitying to boot.
Let’s just say it’s Wintertime, and the wallowing’s been easy.

After my radical hysterectomy (return with me now…) I was put on a blend of estrogen and testosterone. Although generally considered a male hormone, women’s ovaries produce trace amounts of testosterone, which is necessary for many things. Evidently self confidence and weight loss – at least in my case – are connected with Mr. T.

As I am no longer the bearer of a set of O’s (the procedure to remove them is called an ooectomy, which always makes me laugh) I produce neither estrogen nor testosterone.

But, insurance companies being what they are and our coverage being spotty for the past years, at some point my company stopped covering my estratest, then they wouldn’t cover the generic version of it, and then I had to go to a non-testosterone hormone replacement therapy (hrt)

Before anyone writes to tell me I shouldn’t be taking hrt, don’t bother –
Since I had a radical hystero, I will take hrt.

Had I my lovely ovaries, I probably would just deal with more holistic remedies.

After another marathon session of, “50 reasons why I hate myself” I realized that there was something going on that just wasn’t explicable. I battle depression, that’s not a secret, but this felt entirely different.

So I spoke with my doctor and she agreed to try to get me back on an estrogen / testosterone supplement, just to see how that would go.

No, the drug isn’t covered by my insurance, but I felt I really needed it.

The mechanics involved were insane – the drug is killer expensive – and I am grateful to WalGreens which has a pretty great drug club type thing that brings the cost to $30 for a 3-month supply.

After a few weeks I’m noticing a difference. I feel a bit less hopeless, more able to see clearly. I feel stronger mentally, more agile and less a constant ‘victim.’

I have NO idea if this is all in my head, if I’m experiencing some kind of testosterone placebo effect, or if it’s real. But I’ll take it.

I’ve been on radio silence for so long – hesitant to blog, to send emails, to communicate with many folks because I felt so weak (mentally and emotionally), so unable to cope.

IMG_0004The Winter That Will Not End wasn’t helping, but at least it’s pretty.

So this weekend I see a bunch of students at Yarn Over (the Minnesota Knitting Guild’s yearly AMAZING knit class / marketplace extravaganza) and I see a bunch of peers.

Seriously, Yarn Over is an event that is spectacular.

Outside of the knitting convention type of events like IK Knit Lab, Stitches or Vogue Knitting Live, this event brings in the most exciting teachers.

Yarn Over is the event at which I taught in 2006 when I ‘met’ Minnesota for the first time and determined to move my family here.  Ironically, it was then held at Arlington High in St. Paul – which is now called Washington High – and which is where my son Max is a student!

IMG_2140One more ‘moving to MN sidebar’

At the Yarn Over Teacher Dinner back in 2006 there was a prom group at the restaurant. They were SO happy, everyone all together as a group, not terribly “datey” or money centered (limos, etc.)

I remember thinking, “This is what I want for Hannah, a prom that is FUN, not an explosion of $$ and broken hearts…”

And this past weekend at her Perpich Gala, that is what my dear daughter got – a lovely dance with great friends – a dance that ANY kid would love.

Seeing my peers at an event like Yarn Over is always wonderful, sometimes scary, and I’m interested to see how my pathway out of confusion and darkness helps me interact better with folks that – true or not – I feel judge me.  Peer review, it’s the name of the game in any industry.

I’ve been pondering the concept of passion. For whatever reason, I feel I’ve misplaced mine, so I am trying to line up a series of interviews with other knit folks about PASSION.

If I happen to see you at Yarn Over and drag you into a corner and ask you to give me 15 words on what excites you, please play along – I’d appreciate it!

And if you’re not a member of the MN Knitting Guild, you SHOULD be! You can only take Yarn Over classes if you are, but you can register at the event and I know that I still have places in my knitting with wire class.  Bonus – you’ll leave class with a lovely bracelet, and the ability to create many more for Springtime graduation/Mother’s Day/May Day gifts!

Bridging Fear

We think about our lives in different ways, on different days, trying to make sense of the incomprehensible.

Some days I think of my life as a long trip; a rough journey at times, an easy skate at others. In the movie Parenthood, Steve Martin comes to a place of peace when he envisions his life as a roller coaster. I find this a helpful analogy.

But there are periods when my life feels like a war zone – I think all of us feel that way at times – but it’s never been so vivid as in the past few years.

And, of course, being a child of two members of The Greatest Generation, loving history as I do, and making a hobby of reading about Europe in the 1930’s and 40’s, the war I can most easily reference is World War II.

This past year I’ve read several first person accounts of London before, during and after the war. The courage of the citizens is well documented; the steadiness, humor and ability to keep some semblance of a daily routine have resonated in my own personal life.

Early in the war, the citizens of London found ways to cope with incomprehensible terror. But exhaustion and time led to a war-weariness that made subsequent rounds of bombings 4 or 5 years into the conflict harder to bear. I identify with those late-war Londoners, too bone weary to head to the air raid shelters, numb with daily terror.

As many of you know, Gerry, my husband, has cancer. Multiple Myeloma, to be specific. When he was diagnosed in 2007 – soon after our family moved to Minnesota – the prognosis was poor; 2 years. At the Mayo for a second opinion this was reduced to 1 year, and a blessed numbness settled over both of us when we heard that.

A friend refers to this sensation as ‘god’s anesthesia’ and that’s not a bad way to think of the mind block that keeps overwhelming pain at bay. I wrote about our first year with cancer in my book Knit With Courage, Live With Hope, and it was a helpful way for me to face fear head on. I’ve heard from other caregivers that it has been helpful for them, too.

Fast forward 5-1/2 years and Gerry’s still with us, we feel that we are the most fortunate family in the world, even though the anesthesia has long worn off.

And I am exhausted.

This past Autumn Gerry’s cancer came back (his numbers were slowly creeping up since last Spring) and a new round of a trial drug, Revlamid, seems to be working well. His test numbers are up where they should be, down where we want them to be, including the dreaded M-spike.

But during those 5-1/2 years, aside from the many joys that our family has shared, something started happening deep inside of me; the slow, steady, unrelenting rise of fear.

A deep, broad river of apprehension runs through my life, fed by tributaries of dread and panic.

The first fear is obvious; fear of losing Gerry. But in the time we’ve had since his diagnosis I’ve lost so many friends and family members that this fear has been wrestled into perspective. It’s an understandable fear.

Right behind that first fear are all of the regular fears anyone in my position might feel: fear that I won’t be able to earn enough to keep the family going; fear that the kids will be strongly affected in a negative way by our experience; fear that Gerry will have more pain. All understandable fears.

The less understandable fears are the ones that haunt me: Fear that I won’t deal with this graciously (I haven’t at times); Fear that I will be harshly judged by outsiders (I have at times); Fear that as I struggle through this adventure I’ll behave in ways that are erratic and incomprehensible (I’ve done this, too).

And these fears, in turn, breed next generation fears that often DO overwhelm me: Do folks look down on me because I’m unable to cope with the fear? Am I really just plain weak, deep down inside? If I ride my bike an average of 8 miles a day and eat fairly well, why can’t I get thinner? (okay, this last more of a whine than a fear…)

Enumerating these anxieties helps me understand how fear can spiral out of control, overtaking common sense with panic, shoving self esteem out the door and replacing it with it’s doppelganger, pride.

Unlike self-respect, which is positive, life enhancing and resilient,
pride can be easily bruised and shattered.

Then, on the worst days, terror comes in uninvited. It kicks pride to the curb and allows self doubt, self loathing and self hatred to make a house call.

All of this anxiety creates stress, which overwhelms me.

I’m certain that – to a large degree – the genesis of my fibromyalgia is rooted in this stress. I believe that my current week-long intense back pain is a product of stress.

Spinning my wheels is how I deal with stress; sometimes I spin my wheels with non-productivity (Tetris and Scrabble, anyone?) and other times I bicycle. The biking is much more effective, and has a double benefit of reducing stress and physical pain while increasing strength and overall fitness.

But it’s winter, not a lot of bicycling is going on, and my body and mind are paying the price. I do yoga in the cold weather, I was swimming but found myself feeling so panicky in the pool that I had to stop, but nothing is like my bike.

It’s been a very rough Winter for me, fearful and painful and so many other bad-ful things. I second guess myself, my work, my abilities, my looks; then I third and fourth guess everything just for good measure. I’ve been in a bad place, re-living every negative interaction I’ve had, replaying every nasty comment I’ve overheard (or over-read), and it hasn’t been helpful.

And because I’m in a rather fragile state, the casual nastiness of an online comment or a thoughtless action are weightier than they would be if I were in a more stable, healthy place of mind.

I need to cross Ol’ Fear Creek, which has so overfilled itself that it’s now a raging whitewater. I’ve tried several times to throw myself into Terror Rapids, only to discover I’m no good with a paddle.

And, at any rate, Terror Rapids is probably a better place to be than Sh*t Creek…

I need to build a bridge over the fear, high enough above the raging river that I don’t get wet as I cross. I’m not exactly certain how to do this, but I feel sure that I have the tools and materials at hand.

Holiday’s End

We drove home from San Diego, a whirlwind trip

(a little TOO whirlwind when I ended up getting a speeding ticket; everyone in the car agrees that there were MANY cars going faster than I was, but we had the tell-tale luggage on the hood of our car.  Plus, I was speeding.)

Odd how something like a speeding ticket can plunge one into a dark, dark place.

Or maybe it was being away from home for 2 weeks? Or the sea-sickness? (which continued to haunt me in the car; for the first time in my life I actually got car-sick on the way home…) Or maybe it was the general post-holiday blues?

For whatever reason, I had a hell of a hard few days. The kind of days where everything stupid you’ve every done in your life gets all dressed up and comes over to visit. Rough. It’s moving on, which is a wonderful thing, but I’m still feeling shaky on my feet. It’s not unlike the after-sea-sickness feeling when I wasn’t ill any more, but felt very unsteady.

I’m sure there’s a name for it, ‘post-depression-nausea’ or something like that. And, for what it’s worth, as I grow older it seems periods of sadness like this are fewer and farther between, and don’t last as long.  But they’re just as deep, which is always scary.

Depression is absolutely terrifying at times.

In the middle of my sadness I tweeted:

Screen Shot 2013-01-07 at 10.18.37 AMand the lovely response I got was incredibly helpful.

I felt guilty for going public like that, essentially asking, “Tell me I’m okay!  Tell me I’m loved!” but I was gratified by the kindness that came back to me.  Thank you, everyone.

I know that we all need some kindness every now and then, I’m very grateful to my friends for sending me cyber thumbs up.

Depression affects so many of us, and it makes some of us ashamed (which I know is silly) but it’s true. I hope that by writing honestly when I have my own down periods, I can help someone else feel less alone, less ashamed, less isolated than they might.

LAST DAYS IN SAN DIEGO

I hadn’t blogged about our last few days in SD, mostly because I was crazed with finishing some crocheted swatches and sketches for submission, packing, getting the house fit for the return of the owners, etc.

We had a magnificent time on the West Coast, and we couldn’t help but daydream about living in such beautiful surroundings.  This, obviously, is not going to happen (ch-CHING!) but visiting beautiful La Jolla and seeing so much of our HUGE country on the way there and back is something I don’t think any of us will forget.  It was my first time in Arizona, New Mexico, Nevada and Utah (except for airports) and driving through the states is something that everyone should have a chance to do.

Just be sure to take your Dramamine.

Below are photographs we took in our last few days, around the house, out at Coronado Island, and at the Point Loma Lighthouse.  The weather was off-and-on rainy, but that just made for more dramatic pictures!

The Winners of the Buffalo Gold Earth-Lite Are…

Jodie & Cheryl!

Totally picked at random, the winners of the two skeins of yarn (1 skein each) are Jodie and Cheryl – CONGRATULATIONS!

Thank you EVERYONE for playing my game, and thank you also for the Happy Birthday Wishes!  My birthday was yesterday, which is why I didn’t get online until late in the day.

Actually, I didn’t do anything very personal, but I did have my knitting group over for our monthly meeting and utilized the group members to model some of the final pieces for History on Two Needles.  A delightful evening was had by all (I hope!)

Stay tuned for another GREAT giveaway later this week!

PAIN

I was in a show almost 20 years ago in NY (an amateur theater production, nothing professional) where I had a small chorus part.  It was the musical “BABY!” (the exclamation point is key) and I had a funny bit where I sang about having many, many kids.

Another brief little bit was another choruster singing, “PAIN! The thing I cannot stand is PAIN! I told the doctor, ‘PUT ME OUT!'”

And that’s how I’ve felt this week.

It has been the most pain filled week I’ve had since I was diagnosed with Fibro.  Why this relatively sudden slide back into painville, I have no idea.

Many theories have been proposed;

  • Was it the single piece of bread I ate last Wednesday? (It came with a salad at the Minnesota Historical Society cafe and I held back until I put the tray on the return conveyor belt, then grabbed the bread as it was zooming away toward the dishwasher.)
  • Could it be pollen, or some other seasonal allergen that’s come to fruition in late August / Early September?  I don’t remember this happening last year…
  • Perhaps it was the 5 hours of standing/walking when I went to the political rally last week, compounded with the 4 hours of standing/walking at the MN State Fair this past week?
  • Or maybe my fibromyalgia is moving to a different level?

For those of you who may be new to the blog, I was diagnosed with Fibro almost 4 years ago and figured out soon after that one of my strong triggers for a flare up was wheat / gluten products.  I’ve been gluten free for 3+ years, but I have my moments of falling off the wagon.  Wheat Flour, I can’t stay mad at you…

Also, for those of you who may not be familiar with Fibro, it’s a REAL condition whereby the body acts as though it’s experiencing the worst flu ever. 

When I have a flare-up, I run a fever, my throat gets sore (usually that’s the first sign), I get body aches (in my joints and muscles especially), and I just feel wretched.

In all honesty, I feel that I’ve been slowly moving to this for a few months.  Movement’s been harder, pain’s been more frequent and intense, and even a long bike ride hasn’t been able to assuage it.  I’m off for a long ride today to my allergist for my monthly asthma Xolaire shot, and I’m going to ask him if there have been any indicators to link fibro pain with that drug (this will be my fourth month on the drug)

Well, aren’t you glad you stopped by for Fibro Chat?

HISTORY

The book is coming along very well, layouts are looking great, the tech editor is moving through the patterns (now I have to do the hard job of actually ANSWERING her questions!) and the photography is pretty much finished.  YAY!

As soon as I have dummy layouts I’ll be contacting folks who Kickstarter Pledged at the ‘name a pattern’ level and the ‘dedicate the book’ level with so they can give me their creative input in the form of pattern names and dedication!

I’m SO excited about this book, I can’t stand it!  It’s looking so great, and I’m thoroughly enjoying the ‘fun part’ of the book.  It makes me think I should look for a job in graphics (I’m becoming quite Adobe CS savvy!)

Exhaustion, et al

This is straight up complaining.  I apologize in advance, please feel free to deposit your own current nagging annoyances in the comments section and we’ll all feel better for having dumped a bit.

Tomorrow I have a nice, special book giveaway; but today I kvetch.  If you’ve noticed I’ve been quiet, it’s for 3 reasons:

1) I’m knee and elbow deep in History on Two Needles, and it’s going REALLY well!  I’m putting the kickstarter funds to excellent use licensing images, upgrading InDesign, and hiring photo assistance.  Life is good.

2) I’m friggin’ exhausted.  For the past few months my doctor’s been phasing me off of prednisone, and I’m not hungry enough to eat the cat anymore (the cat is relieved) but the Xolaire doesn’t seem to be filling in the gap.  I notice each day is a bit harder and harder on the bike – breathing is becoming more difficult.  Damn.

3) Slow pain.  Bad breathing leads to less biking, less biking leads to increase in pain, and it all happens so slowly that if I didn’t keep track of it I wouldn’t believe it.  But there it is.  My fibro is creeping up, it’s getting worse. It scares me.

Yesterday a friend was visiting from out of town, I met her on my bike and she and her kids and I went to playground.  The kids ran around, I didn’t do much (a little pushing, some kid lifting, nothing really!)  Then she drove to my house while I rode my bike.

When I pulled up behind her on my bike – after maybe 3 total miles of riding – I was absolutely wiped out.  We did a quick drive around the ‘hood and stopped at my favorite local fabric store, and that brief bit of walking just did me in.  I feel like I’m 60.  I know this deep, deep exhaustion stems from the breathing, but I just don’t know if I can face going back on prednisone.

My options seem to be:

  1. Happy and exhausted; or
  2. Fat, pissed off and able to breath.

Seriously, though, in the scheme of life this is an annoyance, but life is still damned good.  DAMNED good.  And Gerry’s making tuna salad, so how bad can things be?

MacGyvering HoTN Together

Mentally, emotionally and work-wise, it’s been a pretty great week!

Physically, though, it’s been rough.

I haven’t been able to get out for the bike rides I’d like, which allows soreness to grow in my unused muscles, which makes me hesitant to ride, which leads to more pain – you can see the pain cycle (no pun intended) that I fall into.

I’m on a new asthma medication, it’s supposed to normalize my breathing (which has been steadily declining for about 10 years) and allow me to forego my regular prednisone battles.

Prednisone, for those of you who are fortunate enough to not know, is a wonder drug that allows my lungs to work well, a steroid – but the side effects are pretty brutal.
For me the worst are emotional fragility/sensitivity and weight gain.
(They should call it “pregnisone” because it’s the drug that mimics pregnancy.)

Anyway, this new med, Xolaire, is a monthly two-shot injection.  Three months into it, it seems to be working well.  As I’m phased off of the prednisone, the Xolaire’s supposed to pick up the slack – we’ll see…

And I’m hopeful to get back to my long rides.  When my breathing’s iffy, everything is hard.  When I give in to the difficulty, everything gets even harder.

BUT THE GOOD PART

…is that I’m getting a TON of stuff done for History on Two Needles.  Amazingly good progress!  I’m working through the layout of the patterns, trying to find ways to make the experience of reading the book interesting and instructive.

My Sketch of Tissot’s Painting

The license fees for the images are going to be heavy, but manageable (thank you kickstarter!) so I’m trying to work around that by paying lower fees for black and white images for some pieces, then augmenting those sections with my own color sketches.

It may work, or it may just look dumb, but so far I’m happy with the results.  This will also allow me to isolate the individual sections of the original artwork (which were so inspiring to my finished garment.)

I’ve been using an iPad app called Procreate, which is sensational!  I’m able to sketch – not awkwardly wrangle my Photoshop skills (as I’ve been doing – although not entirely unsuccessfully – in my previous computer sketches.)

The best part of Procreate is that it allows me to use the techniques I spent years developing in grad school, my own style of shading, detailing and softening that I thought I could only do on paper.  I really love this application.

I can use my finger for a lot of the drawing, but a stylus is better.

So I found an online tutorial showing me how to make my own stylus with a pen, a sponge and some wire.  I changed things up by using a dpn (signature, of course!) because that feels better in my hand.

It’s been working great, even if it is a little ugly, and I feel it should earn me the MacGyver level II merit badge.

NOTE: No needles were harmed in the making of this stylus, which can be easily taken apart.

So although my physical movement has been hampered with breathing difficulties and all-over body pain from the fibromyalgia, I’ve been able to get a great deal of work done, which is not bad!

I plan to get out for at least an 18 mile ride today.  With any luck I’ll push a bit of that pain away as I pedal, and I can take my iPad with me and get some sketching done during rest breaks!

Gerry Update

A lot of folks at TNNA asked about Gerry, and I figure it’s time for a short update.

Overall, things are very good.  When we consider that 5 years ago we were told that he had 1-2 years, things are exceptional!

Hannah & Gerry, 2012

Gerry’s doing okay – he has good days and bad days.  This spring he had a number of good days all strung together, which was wonderful!

This Summer’s been hard for him so far – me being away in Ohio for 2 weeks with Hannah was exceptionally hard for him – so we’re still recovering from that…

He was in what they called a ‘good partial remission’ because, evidently NO ONE goes into remission from this Multiple Myeloma. 

Hannah & Gerry, 1997

As of a few months ago, though, he’s officially relapsed.  Which was exactly what they told us would happen, but it’s happening 3-4 years later than they projected, so that’s very good.

As of his last visit at Mayo this past month his numbers were holding steady and even improved from the previous checkup (yay!)

If/when he does continue to decline, we have several strategies that the doctors are working on.  The great thing about this cancer, Multiple Myeloma, is that EVERY day seems to bring new breakthroughs, and new ways of dealing with the disease.  Gerry is living proof of that.

We have enough stem cells harvested (from 2007) to allow him to have two more stem cell transplants, but that’s far down the road, and a road that none of us want to go down (especially Gerry!) 

It’s a miraculous procedure, but also incredibly hard, painful, and exhausting.

So that’s what’s up with Gerry!