Category Archives: Health

Writing Less, Dyeing More!

It may seem to those of you who read my blog that I’ve been abducted by aliens, biked off a cliff, or lost the use of my fingers.

None of those are true, but I HAVE been abducted by a dye pot!

ModeKnit Yarn is doing extremely well – we’re having a hard time keeping up with demand (getting easier every day as we figure this thing out) and we’re planning for our next big show in Illinois (the Midwest Fiber & Folk Art Fair)

New colors, new inspirations and ESPECIALLY new ways of dyeing yarn is on the horizon. We hesitate to offer the newest items online because my personal preference is to only sell things online that I know I can duplicate (for future, follow-up orders)  So in order to see our latest colors and dye methods, catch us at the fiber shows.

To see a list of ModeKnit Yarn fiber shows, and where I’ll be teaching, click here.

BOOK

This weekend will be the final photography for my newest book (due out Spring 2015 with Stackpole Books) and I’m finishing up the patterns. It’s been a VERY fun book to work on, all of the pieces are small items, boleros & armery pieces and head-wrap/scarf types of things.

Once that is out the door I’ll have MUCH more time to devote to developing pattern support (and having samples knitted) for ModeKnit Yarn. There are SO many ideas I have, I cannot wait to share them with you as this Summer stretches out before us!

ModeKnit FLOW

Some of our earliest Semi Precious colors, as interpreted in FLOW

Our earliest Semi Precious colors in FLOW

We’ve been toying with methods to create long gradient color changes, and I believe we’ve hit on an excellent method.

You’ll be able to read more about this over at the ModeKnit Yarn Site as the colors are available online (as noted above, before I offer them online I want to make certain I can reproduce them faithfully and in quantity)

But here’s a taste of what I’m dyeing up these days! That’s Spessartine, Lazurite, Mercury, Tanzanite & Ametrine, all anxious to be knit up!

Health

I think I’ve figured something out, and I’m a bit chagrined that it’s taken me so long to come to the following conclusion; my fibro is strongly affected by synthetic sweeteners.

This Spring Vickie Howell expressed surprise when she saw me drinking a diet coke. Her own mom has Fibromyalgia, and the aspartame in DC is a trigger for her flare ups.

I laughed it off, saying I’d never noticed a connection. And I took a long sip of my Diet Coke.

The truth is, the only time I generally drink Diet Coke is when I’m traveling, on the road, and there are so many variables that when I have a flareup while I’m on a trip I hadn’t put two and two together.

When I’m home I drink water (a LOT of it) and unsweetened tea (hot and cold).  I generally don’t add sweetener to anything (when I do have sweetened foods, it’s a cake I’ve baked myself or a piece of candy, not drinks.)

But this weekend was Andy (Hannah’s) graduation party, and we’d stocked up on Diet Coke for the festivities. It was also, coincidentally, one of the worst flare ups I’ve had in almost 3 years.  As I was lying in bed for the 2nd straight day, not able to do much besides write in agony and play 2048 (damn you, Adina, I will best you yet!) I was befuddled as to what was the cause of this latest flare. And I sipped another Diet Coke.

Was it the pressure of finishing a book, the stress of having in-laws visit and Andy’s graduation? The financial working-out of paying for college? The party? The work of dyeing? The fact I hadn’t been for a bike ride in over a week? I couldn’t put it together.

http://easycooking4one.com/wp-content/uploads/2012/06/aspartame_artificia.jpgAs soon as I was feeling slightly better I went out for a long ride. Only instead of my regular water I took some vitamin water in my bottle, not realizing it was sweetened with a non-sugar substitute. The effect was immediate.

I rode 19 miles, but I felt like hell by the time I got home. That’s NEVER happened to me—the bike is where I go to escape flare ups!

And then it hit me. The common factor in both my major flare up, and my mini one on the bike was the imitation sweetener.

So I’m off the aspartame. I only wish I’d listened more clearly to Vickie when she suggested the cause/effect her mother experienced! I’ll keep track of how I’m feeling, and I’m hopeful that this will make travel a bit easier, too (no more on-the-road diet cokes!)

An Open Letter to Mrs. Brokaw

Dear Mrs. Brokaw,

Obviously I don’t know you, we’ve never met, although I – like many Americans – feel that I know your husband. My own husband’s father was a stagehand at NBC for many years, and always mentioned what a mensch your husband was. Stage hands learn pretty fast who is a good guy, and who’s a bit of a prima donna.

So apparently this past Summer you joined the club I joined 7 years ago, spouses of folks with Multiple Myeloma. We also share the fact that our husbands are being treated at the Mayo Clinic, which I consider a very good club to be in, indeed.

You’re in the best hands in the world. When Gerry, my husband, was diagnosed his prognosis was poor, but every year, with new drugs and improved treatment options, his prognosis gets a little better.

Life has never been as precious to us as it as these past few years. We feel amazingly lucky. Excellent work is being done all over the world on this disease, but we’re biased toward the Mayo as we live in Minnesota.

I’m not going to say, “Cancer is a gift” – because it’s not. This is a painful, frightening disease – I hope your husband hasn’t had too much bone damage and subsequent pain.

But what this disease HAS given to our family is a golden opportunity to realize exactly how precious we are to each other, and how wonderful each day we share is. Often at the Mayo we would remark that it felt as though we were on a second honeymoon, except this time with chemo.

You’re not alone. I know it’s presumptive of me to write this note, and by this time you’ve realized everything that I could ever tell you. Know that there are many spouses next to you, standing by your side, all of us loving our husbands and wives, all of us willing to share some strength or just let you know that a prognosis can change for the better, especially with Multiple Myeloma.

All the best wishes for treating this terrible cancer as a chronic condition!

Best,
Annie Modesitt

Happy New Year!

It’s another year, and we’re crossing our fingers chez Landy/Modesitt that it will once again be a relatively uneventful one healthwise for Gerry and myself!

Learning to deal with a chronic condition is a good zen exercise in living itself.  After all, isn’t LIFE a chronic condition?

So this year I traveled a bit less, rested a bit more, and biked when I could. I didn’t break any records, but I stayed pretty healthy! Gerry keeps on keeping on; we cross our fingers that the Revlimid & Dex keep doing their magic (and that the Chronic Disease Fund keeps helping us with the $9K/month cost) and we live hopefully and happily!

In 2013 I stayed home more than I had in the past, but I tried to offset that with more designs and all of my work paid off this Autumn when over 16 of my designs appeared in various magazines around the knitting world in the same month. That was great!

I also came to a decision in 2013 that I was tired of working for less than minimum wage in order to, essentially, earn money for other folks.

I love designing, I love knitting, but I don’t love working 80 hours in a week to earn peanuts.

Don’t get me wrong, they’re 80 very ENJOYABLE hours, but I feel that there’s hardly a moment in the day when I’m not thinking of a design, knitting up a swatch or sample, or plugging away in “math hell” in order to write up a pattern.

I’d been feeling this way for a long while, and when one pursues a career of LOVE (acting, writing, composing, designing- the sort of things folks usually do while starving in attics) one can’t expect to get rich.

After 6+ years in a freelance/caregiver ‘holding pattern’ it’s time to change things up, or go a bit mad. Since Gerry’s illness I can’t travel as much (which is where most of my income came from) so I’ve decided to use my at-home time more wisely and augment my design income by starting a hand-dyed yarn business with a partner, Kathleen Pascuzzi. Also, this year, with my health insurance no longer a month-to-month nail biter, I feel a sense of  security I haven’t felt in a LONG time!

I can’t help but think there are other small business folk / entrepreneurs who are feeling as if they can finally spread their wings and not rely on a not-very-fulfilling job simply to retain health insurance. If I’m right about this, I think we’ll see a nice blooming in our economy beginning this year.

We’ll see what becomes of ModeKnit Yarn, LLC in 2014. Our initial offerings of semi-precious stone inspired colors sold very well, and we’re currently waiting for more yarn to arrive so I can fill order requests and try out new color ways.

Our rough business plan involves starting small, selling online and at local fiber shows, then increasing production (hopefully by hiring extra hands) and moving on to a wholesale business in 2015.  Anyway, that’s the plan.

So although I’m only teaching in 3 or 4 locations in 2014 (first stop, Knitting Lab in New Hampshire in May!), I’ll be visiting several fiber shows with Kathleen and our bins of yarn (first up, Shepherd’s Harvest in May – that is, if we get accepted!)

I’ll also be enjoying time at home, working (as always), but perhaps using my time more wisely so that I can sell $25 of yarn along with a $6 pattern!

And I’m working on a book for Stackpole on shrugs and short jackets, sourcing my yarn from other indy dyers, which I am supposed to have finished in June.  Watch this space.

Non-Work Life

Our family will be undergoing a major shift this year as Andy (neé Hannah) applies to and – hopefully – gets accepted to a good college. This week she finished all her applications, her final SAT scores came in (1970 cum score, not terrible!) and we’re crossing our fingers that we’ll find the perfect place for her to thrive and become the young women we know she can be; strong, funny, smart and kind!

Max continues to thrive at his high school, specializing in math and science, taking several college level courses in this, his Sophomore year (and avoiding haircuts whenever possible.)  He’s also learned the joys of the debate team, which makes Gerry and me very proud.

Gerry is Gerry; wonderful, funny, happy, loving and HERE!

Every day is a gift, and we’ve been given 6 years of presents that we never expected. We take NO day for granted.

To that end, we’re cashing in a bunch of frequent flier miles and Gerry and I are traveling to Amsterdam for a week in April. We haven’t taken a trip together alone in 17 years, and never alone to Europe, so for the cost of a B&B and walking around money, we’re going to celebrate life for a week of biking, walking and museum hopping. Suggestions on places to see are WELCOME!

This trip is made possible by having responsible teens and good friends who will pop in on them (not because they NEED supervision, mind you, but just to make sure a shower is taken every few days…)

We’ve come to understand, in a way we never thought we would, that life is for LIVING, and the best way to appreciate every day is to live it fully.

And who knows, while I’m in Holland maybe I’ll dream up a bunch of new colorways based on Tulips (my favorite flower!) and make some great in-person knitting connections!

So go make 2014 memorable for yourself, even if it’s simply memorable for being a quiet, peaceful and fulfilling year!

“I feel like I’m lying…”

Last week was one of the monthly meetings of Gerry’s Stillwater Multiple Myeloma Support Group.

This group has become very important in our lives, the folks involved are lovely – kind, smart, hopeful but not smarmy, a great group to surround ourselves with. We feel fortunate to be part of them.

In the last meeting one member mentioned that he’d been told over 5 years ago that he had ‘probably 2 years’ – very similar to Gerry’s own initial prognosis. He spoke of feeling as if he were “lying” sometimes because he’s outlived the time period he’d told so many folks of when he was first diagnosed.

I feel the same way. Gerry’s here – he’s HERE – I want to go shout it from the rooftops every day because we are so thrilled that HE IS HERE!

But it’s different from our initial expectations.

Folks often stop me and ask about Gerry, or they email; it’s so kind of them. Each time I say some version of the same thing,

“Gerry’s doing well, he’s active, his cancer came back last Summer but we’re handling it with a new drug, and have enough stem cells harvested for 2 more transplants if that’s necessary.”

And all that’s true. But because we’re dealing with the unknown, it also feels like I’m pretending to tell the future, and that feels awkward.

If I were to speak from fear, I’d say, “I’m afraid he won’t be here long.”
If I were to speak from hope, I’d say, “He’s here, and he will be for a long time!”
But between fear and hope is the reality, and many days I don’t know what that is.

Gerry and I at dinner

Gerry and Annie at dinner

Last Summer/Fall Gerry began experiencing some of his initial symptoms again, and his visits to the Mayo Clinic each month weren’t as sunny and optimistic as they’d been in the past.

We both knew the truth, but didn’t know what they meant. It was like watching a very well made mystery, knowing there was going to be a twist, but having NO idea what that twist would be, or where it would lead.

And, of course, EVERY human lives this way. In our case it’s heightened because the immediacy of cancer is different from general, run-of-the-mill ‘growing old’

Every time I hear of a friend’s passing – or, more to the point, hear of a friend’s spouse passing – I feel like some kind of charlatan. I feel like I should apologize for still having a husband (which I know is insane!) I feel guilty.

My husband’s still here, and wait – wasn’t he supposed to be gone? Didn’t we tell everyone six years ago that by this time Gerry would be a picture in an album and not flesh and blood?

As our friend in the MM Support group said, “I feel like I’m lying…”

How is Gerry right now?

Because I’m a Virgo, I can best answer that in a list;

1. He’s here. After the MM came back, his oncologist put him on Revlimid ($9000/month, thank heaven for the Leukemia & Lymphoma Society and the Chronic Disease Fund, who help us with the co-pay!)

Max, Andy & Gerry visiting Carleton

Max, Andy & Gerry visiting Carleton

2. He’s older. And I don’t mean simply 6 years older than he was at diagnosis, he feels more like 26 years older than his 46-year old self. He has the energy levels, strength and vitality of someone in their 70′s (which, these days, isn’t bad at all!)

3. He’s tired. He needs to sleep a lot, but he derives great satisfaction from being an active contributor to family life; he cooks dinner most nights, he does some simple gardening (raking is always good exercise!); he drives the kids around (although I can tell he doesn’t like long drives) and keeps track of our tax information, medical stuff, that kind of family paperwork.

And he takes care of ME! There are days during a fibromyalgia flare up that I feel incapacitated; he helps me get through the rough times, and I am very grateful!

4. He hurts. He has a great deal of pain, it’s constant and even in his sleep I can tell that there are moments of agony. Aside from the Revlimid/Deximethisone cocktail and a probiotic for his digestion, the only medicine Gerry takes on a regular basis is his very strong pain medication.

Gerry & his tall daughter visiting Earlham

Gerry confused by his tall daughter. visiting Earlham

I can tell it bothers him to be ‘on’ oxy and hydro, but we’ve passed the point where he feels guilty about taking them (thank heaven!) and we all understand that to miss a dose is inviting the pain to rise to such a level that it is MUCH harder to quell.

5. He’s Gerry. He’s funny and loving and a pretty wonderful guy. Because of the pain he tends to be more short-tempered than he was before, but given his general sweetness and easy-going nature, it  means he’s STILL nicer than the average human, and we’re so lucky to have him!

This is what the face of Cancer Survival – Multiple Myeloma Survival – looks from one family’s viewpoint.

Ginger the fat cat & Gerry's #1 fan!

Ginger the cat, Gerry’s biggest fan – literally.

The stress of living with the unknown comes and goes, we deal with it, and we try to be as ‘normal’ as we can. We try not to think of every holiday, birthday, event as, “perhaps the last…” because that’s just too emotionally draining and a tad dramatic.

What we DO do is to set goals for ourselves.

We didn’t think Gerry’d be celebrating Max’s Bar Mitzvah, but he did. Next up is Hannah’s graduation from high school, set for June 2014, and all signs point to Gerry’s attendance.

Every day really IS a gift.

The Tooth, The Whole Tooth

I’ll announce the winner of the Crochet At Play book tomorrow (Monday) but today I wanted to talk about teeth.

I’m a dentist’s nightmare. Actually, I’m a hygienists nightmare – and that is in no small part because my own nightmares often include dental hygienists.

I am phobic about teeth. My teeth, your teeth, my kid’s teeth – anyone’s teeth.  I’m SO fearful of teeth that I can’t watch a movie when some tooth nonsense is afoot (Zombie Apocolypse? No problem. Lose a tooth? I’m out the door…)

When my kids had loose teeth, they were directed to daddy, who had to deal with the whole tooth fairy thing. Even now Hannah can make me turn white by discussing the oral surgery involved in her braces. I am a tooth wimp.

Because I’m a redhead I bleed freely (at least, that’s our family lore and I’m sticking to it!) so any time I’m in the dentists chair there’s the added horror; ‘The Return of the Tsarovitch’

Add to that an insane sensitivity (I have always been able to ‘hear’ loud noises in my teeth) and I find myself putting off dental visits.

My own father had weak teeth, also pain filled and with the same sensitivity as mine, and his were all removed at age 42 when he began wearing dentures.  I’ve been luckier, but my avoidance of the dentist means that in my visits (usually every 5 years or so, coinciding with a boost of courage and erratic dental coverage) I generally have at least one cavity to be filled and sometimes a root canal.

Thursday I had a dental visit, a trip to a whole new hygienist (the last one was simply doing her job, but her disgust at my fear was palpable) so I was terrified.

It was warm enough here to bike, which calmed me and gave me a sense of control. I had every strategy in place (I’m actually tearing up as I write this – teeth are a great source of fear for me)

I had a good book on my iPhone along with soothing music by Anonymous4 (my favorite musical group to bring me peace!) I’d taken a pain pill prophylactically, and I was practicing the same deep breathing that got me through delivering my 11lb baby boy (with no meds, my claim to fame!)

I explained my situation to the hygienist, who was absolutely lovely; kind, warm, human and very understanding. She listened, she was careful, and she praised my courage. She took my blood pressure and the fact that I’m usually 120/80, but on this day was 160/90 was pretty telling. We waited, she chatted more, explained what she’d be doing, and my blood pressure came down.

This woman is a walking saint, and I hereby announce that I would follow this hygienist anywhere.

Xrays were taken (painlessly – I have had hygienists who were pretty brutal with those cardboard pieces) and my gumline was measured. The hygienist was smart enough to realize I was afraid, practically phobic, but also quite interested in the goings on in my mouth. She explained what she was doing in a very easy yet clinical way, taking my mind off the pain of her little measuring tool. The few times she dug deep enough to hurt, she was apologetic but firm and we continued.

I really liked her style, as I said, she was very human.

The dentist came in and we discussed my two cavities, and the fact that one might actually turn out to be yet another root canal. I explained my fear of teeth, my various forays with flossing (always ending badly, in tears and recrimination) and my use of dental washes and rinses (which hasn’t taken the place of flossing, but apparently has helped this non-flosser beat back gum disease for another year)

It was decided my cleaning should take place over 2 visits, with a local anesthetic, and that an anti-anxiety med should be used before the visit. I felt like a baby, but I also felt grateful that my fears and VERY real pain issues were being addressed.

I left feeling better than I’d felt after a dentist visit in many years! I used to see a dental student at the NJ Medical and Dental school in Newark (Hi Vinny!) and he was kind and gentle (and gorgeous!)  Since then I’ve been looking for a dentist who has the same gentleness (if not the same amazing Italian looks – sigh…)

I may not have found the dentist (the one who saw me is leaving the practice, I’m scheduled with a different dentist for my return visit, but I’m assured he’s a kind one) but I have CERTAINLY found a hygienist I can trust.

After I left, though, my mouth was so sore from the poking that it took about 3 days for me to feel myself again. I sound like a baby – I FEEL like a baby – but this is my tooth reality. The first week in December is when the next round of visits occurs, the prescription for lorazepam’s been called into the pharmacy, and I’ve actually begun flossing with those little floss-on-a-handle things.

My mother kept her teeth until her death at 85. I’m beginning to feel hopeful that I might do the same!

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!

I Like To Ride My Bicycle

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.

IMG_0004

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.

IMG_0008

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. 

IMG_0033

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.

IMG_0029

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…

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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.