Writing, Shipbuilding, and Fibromyalgia

That's a quote from Michael J. Fox discussing his outlook on Parkinson.

Probably not very. I think of people like Pat who struggles to get from her car to her desk. However, while her physical activities have been bound by her illnesses her mental outlook hasn't. That's why I admire her. So when I feel overwhelmed by my pain, I think about her. I can walk, drive, paint, clean, weld (badly), write, knit, cook, exercise and all the other things I do everday without a struggle. So, I don't think I'm sick. I just hurt sometimes.

I'm trying to eliminate my dependence on a sleep aid. So, I've increased my dosage of Lyrica at night. Last night I didn't have any trouble getting to sleep. I used 3 mg of melatonin. However, I started waking up around 3a, about 8 hours after my last dose.

After reading more about Lyrica, it is suggested that the max dosage for fibro is 450 mg. Higher dosages than that don't any greater effect. Also,when I take over 100 mg I'll be asleep in about an hour for about 2 hours. So higher dosages in the day are inconvenient.

With that in mind I'm going to try this:

50 mg at 8a
50 mg at 2p
200 mg at 8p

If I start to have a lot of pain during the day, I can increase my daytime dosages to 100 mg.

We'll see! :)

Doug has been explaining to me how a CNC machine and its software works. This is really cool! You can take a photo, place it in an application called ArtCam which creates a 3D image of it that you can then manipulate into the image you want. Then it plots the machine's cut lines and saves it in a file that the machine can use.

It sounds easy but there's lots to learn about the software. But in the end it will let us cut out parts for the sailboat or custom parts for other people.

Friday, February 6, 2009

Found out that one of the reported side effects of Ambien is true - it can cause vivid nightmares.

I don't have nightmare. I might have a bad dream but nothing like what this was. What was really disturbing was that I knew I was having a nightmare and I knew it was probably caused by the Ambien but I couldn't wake myself up. I remember that somehow Aden was in danger but I couldn't help him and the same theme was repeated a number of times but in a different setting. That totally sucked!

So, I'm switching to Lunesta. I hope to be able to increase my Lyrica dosage at night to the point where it makes me drowsy enough so I don't need any sleep aid.

Status of submarine: With the cold weather, we've been working on projects inside the shop. Doug's been working on the CNC machine, Kay's been sewing covers, and Rand spent a day learning to use the plasma cutter and welder. I know her creations will continue to improve and we are all looking forward to see her artistic abilities displayed on our walls.

Status of sailboat: Still got the steel laying outside. With Carl's help, he and dad got the school bus bed plates laid down. Then Dad welded the left over beams into a work table to cut or weld on. It's nice - ask Randi, she's the first to use it.

Carpet Garden - All the pieces have been laid out

School bus salvaging operation - Complete! Salvaged seat covers, foam pads, metal sheets from the sides and top of the bus, deck flooring, wiper blade motors, rear-end transmission, brakes, axle, differential, mirrors, lights, and the front grill (for Carl). We sold the rest. And now the pad is empty! Wonder what the neighbors thought?

InfidelStrong.com - Randi is working on the web site on a daily basis. She's learning to more about it. However, sometimes it feels she takes one step forward and then two steps back. But she's getting better. I know creating websites are a pain in the ass. I did it once and not doing it again.

Aden: Nah, nanahnana, NAINAINAI! Ack! Ack! Ackackack! NSA is attempting to translate. We however, feel that has already been accomplished. All you need to do is watch "Mars Attack!" and you'll get it.

The Dogs: They are defining and redifining their roles and the pack's heirarchy. The big question is who is the biggest weenie - George or Tony?

Andie the Cat: Now referred to as Shadow Cat.

More to come later

In December my youngest brother wrote to me asking that I write back. It's taken me two months and some deserved pushing and prodding from Doug to answer him or not. So I did. I've never been ashamed to explain how my dad was a drunk but saying my brother molested and that my mother knew is something that until now I avoided. But it is time to move on. Those experiences didn't define me but they did give me empathy towards others who have been abused.

So will I one day include my experiences in a book - a book that anyone could pick up and read? Maybe, if I thought it would help someone. Writing that book could be a very freeing experience

Sometimes it seems our weekends go by too fast - I think a 3-day weekend should be the norm. :)

Since Saturday my pain level has been a 2 or 3, which gets to be frustrating because of the amount of drugs and the resulting amount of sleep caused by the drugs. I'm still looking at different meds and regimes. Cymbalta has been approved for fibro but like Lyrica and the others it too has side affects. So for now I'm sticking with Lyrica and upping my dosages, which have been really low. Hopefully, by taking a larger dosage in the evening I won't need any sleep aids like Ambien or Lunesta.

On the writing front, I have two new school visits this spring and one in the fall. I'm a rarity in the school visit world; not many visiting authors write nonfiction. So that's my draw - I write about real things. And my sub book is coming along despite days when I can't write.

On the boat building front, metal prices have dropped dramatically and probably won't begin rising until 2010. So we'll be buying more steel and aluminium this spring while prices are low. Dad's working getting the CNC machine working so it can cut out the pieces for a large model of the boat -1inch:1foot. Big model - Aden can play in it when we're one. :)

The weekend is coming up - hooray! Not because it's time to slack off and kick back but because it's the opposite. This is our time to be constructive and productive. And Doug and I get to work along side each other - we like that. :) And we get to go out for Mexican food. We like that too.

The last few days have been great. My pain level was usually at a 1. I changed the timing and dosage of my Lyrica, which seems to have helped. It can make me drowsy so I'm trying to take more in the morning, when I'm naturally sleepy and be more awake in the afternoon and evening.

Until now I've pretty much been employed as a white collar worker - public school teacher, hospital teacher, curriculum specialist, and writer. The most physical things I did was lift boxes and desks when I moved classrooms and at Laureate I didn't even do that because that was housekeeping job's to do. Now, however, I'm moving into a new phase of my life as a blue-collar worker.

As a welder, shop assistant, seamstress, sail maker, and steel worker (a little bit of one), most of my activities involve moving some part of my body, particularly my hands. And unfortunatly, unlike Doug and Carl I do not have a clear sense of body in space (as the physical therapists call it). Which means at times I have no idea of how to coordinate my body with my brain. I don't know where my feet are in reference to their environment. I am terrible at positioning my self when welding, cutting, holding on, lifting, etc. (there's lots in that etc.).

However, while frustrating at times, the positive aspects of physical labor is that when my pain level is high, I still have lots I can do. Sewing seams does not take a lot of brain power. Nor does sorting sockets, bolts, tools, and other clutter around the shop. And I think straight line, flat welding or plasma cutting doesn't take a lot of thought, though it does take attention to detail. And I think I can handle that job at a level 2 without having taken narcotics (probably not a good thing to use tools that create as much light and heat as the sun, in much smaller amounts, of course.)

So on the days I can't write or weld, I can clean and organize. My life hasn't diminished, which is one fear that people with chronic pain often face. In fact, building a boat has enriched it. I now do things that challenge me, yet provide a sense of satisfaction because there is concrete end product. I can watch my welding get better or faster.

Today, my pain level is at a persistent 2 after lots of sleep and valerian. We'll see how the rest of the day goes. And even if my pain level increases to a 3, I still can be a productive person. That sounds rather Stalinistic but it is accurate. :)

Doug's ideas on my last posting:

I think the important thing is that we decide what you should do at each level. Or perhaps better to just simplify the pain level to: 1) Good, 2) Not Good, 3) Bad and then add an apporach level system. Something like: 1) Normal Routine, 2) extra drugs and more sleep, some together time, 3) lots of drugs, as much sleep as possible, lots of attention. Then you could go to "pain level 2" but decide to stay on "treatment level 1". Then after it's been on "pain level 2" for too long, you could switch to "treatment level 2" or even "treatment level 3" if it's still a "pain level 2" but the duration is just been too much.

So that could mean

Pain level - Good. Treatment level 1 - Continue with necessary amounts of sleep and medications
Pain level - Not Good. Treatment level 2 - Extra sleep with first the use of homeopathic meds and then minimum use of prescription meds like Flexeril and Lortab, more than normal amount of attention
Pain level - Bad. Treatment level 3 - More sleep, maximum use of Flexeril and Lortab, lots of attention

We've noticed that sometimes it's not the intensity of the pain that can really drag me down, it's the duration of it. After a week of Not Good, I often just need some relief. And lots of Doug's attention always makes me feel better. :)

I updated the look of the blog to make it more personalized and organized. I'll try to keep my posts more organized, too.

Work in Progress
I'm finishing up the outline of the Squalus book today. I like a detailed outline when I write a book this long because it helps me to see how the chapters will flow. Sometimes it seems like it's the hardest part.

Family
The last few weeks have been busy with settling Randi and Aden in while Carl gets ready to leave for Afghanistan. While I'm proud of Carl's role, it's hard for me not to worry - I'm a mom.

Pain
My pain level was pretty high two weeks ago but has come back down. Today it's less than a two.

Doug and I tried to come up with a workable pain level continuum but it's been hard. :)
Basically I have four levels:

Under 2
More than 2 but less than 3
3
Over 3

which could translate into:

OK
Good
Not So Good
Bad

I think we'll stick with the number system - we're now calibrated to it.

Picture of the Day

I love our tattoos. Too bad they stay out of sight for the winter months. Maybe global warming will change that. :)

Not much pain today until this afternoon - it was getting close to a 3 or "bad" so I took a Flexeril and 10 mg of loritab.

I'm trying to not let my pain level get so high that I can't do anything - trying to intervene before a 4.

Over the last few weeks I've been working on my school presentations, translating my book Helicopters into Spanish, and helping Randi, Carl and Aden move in.

Translating a book, even an elementary book, is a lot of hard work, mostly because my Spanish is based on conversations with the neighbors about tools, houses, divorces, and kids.

The kids and grandkid are settling in to their new apartment. We turned our CNC room into an apartment. Times like this show how broad Doug's skills are - he can manage large databases, write scripts, nearly automate himself out of a job, build cabinets, fabricate household items out of aluminum, and build a boat.

Even though it's been windy and cold I'm looking forward to working on the sub and boat again after our slow-down over the last week.

Surprisingly a lot - we're going to use the windows in the pilot house, the drive shaft, steel beams for spreaders when moving plates of steel, foam in the cushions and steel on the roof to be made into wall art.

Wonder what the neighbors are thinking now?

Sometimes I can't get to sleep at night. I guess that makes me an insomniac. I try the usual strategies - a sleep aid, soft music, deep breathing - and sometimes they just don't work. So after 20 minutes or so I get up and go to the couch. Often I read a sleep inducing book like Woe Is I: Grammar Hints and Tips. That can help but last night it didn't. So I read my kid books and ham radio books and watched the sun come up.

Having a few hours to read books is usually great but when it's at the expense of good, solid sleep I know the next day is a "lost" day. I have to catch up on the missed sleep as well as try to control my pain levels, which rise with insufficient sleep.

I wish I felt like cleaning the house when I can't sleep - then all would not be lost.

I'm looking forward to doing school visits. It gives me a chance to talk about my books for hours and no one minds!

So, this week I've been working on my school presentation PowerPoint presentation. I really like how it's turning out. I've put in movies, which is a first for me. And I'm learning to keep the slides simple and on target. Both these ideas were Doug's - thanks, Honey!

Over the last few days, my pain levels have usually stayed under a 2. I feel like I've gotten more done this week, which feels good, too.

It may be raining outside but I'm sunny on the inside. :)

I managed to sleep today until 10a with the help of valerian, so my pain level has stayed below a 2 most of the day.

And I'm working on my presentation. Hope to have it done this week so I can practice it next week in front of a live audience - first Sam and Andy, then Doug.

My new series, Military Machines in Action, will be released in January '09. I certainly am excited about that!

When your books finally get published it's like giving birth. You've been waiting all this time to hold your "baby" in your arms, or rather hands.

In September a new study was released via the journal Brain. The researchers write that fibromyalgia patients often report memory and attention problems in addition to pain, stiffness and sleep disturbance. What they wanted to determine, though, if fibrofibromyalgia patients' memory and attention problems have any correllation with changes in the morphology (structure and shape) of the brain.

The researchers conclude that the study's results provide clear evidence of memory and attention problems in fibromyalgia as well as the correlation of both pain and neurocognitive problems with brain structure.

"Our data suggest that, in addition to chronic pain, [fibromyalgia] patients suffer from neurocognitive deficits that correlate with local brain morphology in the frontal lobe and anterior cingulate gyrus, which may be interpreted to indicate structural correlates of pain-cognition interaction."

Bottom line, chronic pain changes not only your cognitive skills it is also correlated to a change in the structure of your brain.

Even when I was a kid, I liked thinking of myself as smart. So to be faced with the fact that my brain, the actual grey matter stuff, has been changed and that change goes with a lessening of my "smartness" level saddens me. I feel like part of me has slipped away, and I wasn't even aware of it.

Most of today my pain level was under a 2 but my left upper arm continues to ache and affect the muscles in my neck.

But today I got more done than I had in a number of days. I worked on our finances, read and wrote emails, worked on my presentation, had my flue shots and ate lunch with Doug, so I wasn't going to have to fix dinner. :)