A Portrait of Paul

A Portrait of Paul, by Mary Stebbins Taitt.

See original smudge painting.
See sepiaed version.

Vertigo!

I am having an episode of vertigo. It started before 7 AM when I got up and has lasted over 2 hours so far and is not gone yet. It seems to rise and fall in intensity. The room and everything in it is "spinning." It had the senses of spinning but actually appears to repeatedly move off to one side. It is accompanied by a feeling of dizziness and a slight sense of nausea that also rises and falls. I am having trouble functioning. I stagger and lurch when I walk, and when I look at the computer screen, it moves to one side and makes me dizzy and nauseous. I had a terrible time making the bed.

My Neurologist, Dr. Moudgil, says that my "Vertigo Episodes" could be caused by my brain tumor, which is in the area of the brain associated with balance.

I also wonder if it could be caused or triggered or affected by my food sensitivities. I know everyone will laugh at this notion, but the reason I wonder this is that this episode is accompanied by fevers and sweats, restlessness, poor sleep and other symptoms that have been related to food sensitivities in the past. This could be coincidental because I ate out last night.

So far, all my episodes of vertigo have begun with getting up in the morning.

Vertigo can also be caused by vestibular (inner ear) disorders.

I just did some research and learned that diet CAN affect vertigo! Here are some dietary considerations:

General Guidelines

Dietary strategies for regulating fluid balances involve modifying the amount of certain substances consumed (and reducing fluctuations in those amounts), as well as reducing or eliminating other substances that can adversely affect the inner ear. Components of these dietary strategies include:

• Distributing food and fluid intake evenly throughout the day and from day to day.
• Avoiding foods and beverages that have a high sugar or salt content. Foods with complex sugars (e.g., those found in legumes and whole grains) are better choices than foods with a high concentration of simple sugars (e.g., table sugar and honey). Sodium intake also affects body-fluid levels and their regulation. Each individual's physician will be the best judge of appropriate levels of sodium intake.
• Drinking adequate amounts of fluid daily. If possible, fluid loss from exercise or heat should be anticipated, and extra fluids drunk before and during exercise and in hot weather.
• Avoiding foods and beverages with caffeine. Caffeine is a stimulant that can make tinnitus louder. Its diuretic properties also cause excessive urinary loss of body fluids.
• Limiting or eliminating alcohol consumption. Alcohol can directly and adversely affect the inner ear by changing the volume and composition of its fluid.
• Avoiding migraine triggers including foods that contain the amino acid tyramine. Examples of such foods include red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (e.,g., cheddar and Brie), and nuts.

Non-dietary substances

Some non-dietary substances can increase symptoms of vestibular disorders as well. Aspirin can increase tinnitus, and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, can interfere cause water retention or electrolyte imbalance.

Note that last night I had one and 7/8 large glasses of beer which is very unusual for me. It says above (and bears repeating) that: Alcohol can directly and adversely affect the inner ear by changing the volume and composition of its fluid. SO there are two possible causes for my problem: the tumor, and unusual alcohol consumption. However, since I eat simple sugars daily and do not experience vertigo daily, the dietary connection may not be the case of my problem.

I am still experiencing some vertigo 2 1/2 hours after it started.

leaf pattern

I love the colored leaves of fall.

Detail from Migration

Detail from my second to latest piece.

Grateful

Biker Buddy and I are grateful that we had the morning to play at giving each other things to be thankful for and we're thankful we still have the prowess and energy to make each other thankful.  LOL!  YAY!

Happy Thanksgiving.

Biker Buddy's spontaneous humor

This morning Biker Buddy and I were telling each other the things we were thankful for and I said, giving him a hug, "I am thankful you are such a long drink of water."

He responded, "Well, I guess that's better than a short hork of phlegm." (We both laughed so hard we almost choked.) (GAK!)

Happy Thanksgiving!

Hamilton

We're headed for Hamilton today, be back Tuesday. This picture is
from the Conservatory there, at the Botanical Gardens. Have a great
weekend!

X-rays and brain tumor connection

Because my mother had the same kind of brain tumor I have, I worry that a sensitivity to X-rays might be a possible cause of my meningioma and worry that I should avoid X-rays, but I have a toothache. The dentist wants to give me X-rays. :-(

If interested, see study below.

Lancet Oncology 2007; 8:403-410

DOI:10.1016/S1470-2045(07)70107-9

Articles

Genetic predisposition for the development of radiation-associated meningioma: an epidemiological study

Pazit Flint-Richter PhD a and Dr Siegal Sadetzki MD email address a b Corresponding Author Information

Summary

Background

Ionising radiation is an established risk factor for meningioma, yet less than 1% of irradiated individuals develop this tumour. Familial aggregation of meningioma is rare. We aimed to assess whether genetic factors can modify the risk for meningioma formation after the initiating effect of radiation, by comparison of the frequency of meningiomas in families that included irradiated and unirradiated siblings.

Methods

This study was based on a larger epidemiological, genetic case-control study, and included 525 families that were divided according to irradiation and disease status of each of the family's index participant: 160 had radiation-associated meningioma (RAM); 145 were irradiated and did not develop meningioma; 85 had meningioma with no previous history of irradiation; and 135 were unirradiated and did not develop meningioma. Data were collected by questionnaires.

Findings

We found additional first-degree relatives with meningioma in 17 families (11%) in the RAM group, whereas only between one and two such families (1%) were found in the other groups (p<0·0001). p="0·04)." color="yellow">Interpretation

This dataset of families, which included irradiated and unirradiated, and also affected and unaffected family members, created a natural experiment. Our results support the idea that genetic susceptibility increases the risk of developing meningioma after exposure to radiation. Further studies are needed to identify the specific genes involved in this familial sensitivity to ionising radiation. DNA repair and cell-cycle control genes, such as the ataxia-telangiectasia gene, could be plausible candidates for investigation.

Affiliations

a. Cancer and Radiation Epidemiology Unit, Gertner Institute, Chaim Sheba Medical Center, Tel Hashomer, Israel

another study, another study,

---

Dead on the aviary floor

Boss Girl at the museum has called a meeting and I am arguing with her. I have too much to do. I have this huge oppressive weight of tasks, and I haven't done the animal care yet. She insists I must come; I insist I must do my work. The argument gets heated and now I am at the meeting, which is boring and useless and stealing time from what needs to be done. I slip away to the basement to the animal care area. I have been so busy that I haven't made it down here in a long time and things are in a shambles. Three of the rare and precious birds lay dead on the aviary floor. I poke at them gently to be sure they are dead, though a bird on it's side on the ground seems unlikely to be alive. Their bright colors are dimmed and dimming. I pick them up and cradle them in my hands, feeling grief and anger.

As absurd as if seems (and is), I feel like Atlas holding up the sky. And failing, being crushed under the weight of it.

Could this dream—as is—really happen? It could happen, but it unlikely to as dreamed. It is very much like what life at the museum used to be! But, now, in my current life, it is an obvious allegory. And it relates to the elephant dream. I have a continuing perception that I am overwhelmed with too may petty and enormous tasks and I am not doing what is important and that my precious birds (hopes and dreams) are dying.

Some of these tasks (elephants) that are consuming my time include:

Ø Getting the two cell phones back on-line

Ø The issue with the car registration and the threat to suspend my license

Ø Adopting Piano Boy(this is not petty but very overwhelming to me)

Ø The parental estate (this is not petty, but very overwhelming—hopefully soon to be over)

Ø My health issues, insomnia, sleep apnea, brain tumor etc and all the tests and doctoring associated with them.

The dying birds include:

Ø All my unattended novel and book manuscripts from Weeds, to Sissy, to Herpetologist etc

Ø and my poetry manuscripts

Ø and my dreams of being closer to nature

Some of my problems are real, external to myself, and not entirely under my control. Some of them are caused by:

Ø my ADHD, my distractibility (this is real and needs to somehow be dealt with!)

Ø my "low Gemini" tendencies to want to do too much and to take on more than I can handle. I need to say no to others and myself when my plate gets too full.

Ø my procrastination of difficult or overwhelming tasks. I need to plunge in and take small steps.

Still Getting Moved (Attempting to tie up hundreds of loose ends)

Swan on Lake St. Clair, by me

070920, 4:28 PM I am walking down St. Clair Drive toward St. Clair Lake while Graham has his theory lesson. It's pretty warm, maybe 80, the sun is shining from a cloudless sky, a small breeze blows in off the lake, the crickets are singing. Graham slept most of the way in the car. I drove him here, a half hour here, an hour wait, and a half hour home again, because Biker Buddy is at work.

There are sunflowers flowering, but I can't photograph them because they're in someone's yard. Cicadas are singing, not as many or as loud as August, but still here. Squirrels running this way and that with acorns, cars and trucks rumbling by, the stink of exhaust.

At home, I am trying to settle in and complete my move

I spent over an hour today trying to straighten out what's become an ordeal of car registration and insurance. I'd also worked on it yesterday and several other days. I'd received a threatening letter saying that my insurance in NY on my car had been cancelled and that I needed to show proof of insurance within ten days or my license and registration would be suspended.

It said I could do it on-line, but when I tried, I could not. I didn't have on my insurance form the number they required to complete the transaction on-line to I tried calling them yesterday and then again today. I was on hold on a long distance call for almost half an hour before I even got to talk to anyone.

I have to say this: the woman I spoke to was kind, sympathetic, and helpful, but she couldn't help me. New York State requires NYS insurance. My Michigan insurance doesn't qualify. But my New York insurance company does not insure in Michigan.

I need to get the car registered in Michigan (and fast--because the letter says they will suspend the license and registration in ten days.

But in order to register in Michigan, I need my NY state registration and the title to the car. I had the title to the car in hand one of the times I was bringing boxes to Michigan from NY and I placed it at the top of one of those boxes and clearly labeled it, "Contains Title to Car".

Of course, I brought hundreds of other boxes and have not been able to unpack anything because Biker Budduy's house is full of his stuff, Piano Boy's stuff and Past Lady's stuff. There is no room for me.

So the boxes, hundreds of them sit in piles all over the house. Still packed. And Biker Buddy carefully recorded the contents of the first 2/3 of the boxes or more, but we've both read over the lists and can't find the box labeled "Car title." on the list and we can't find the actual box either.

I didn't take care of it right away because Biker Buddy told me, "If you need something, tell me, and I'll find it." Foolishly, I believed him. I looked in all the places I could think of. I didn't want to spend the money for a new title when I KNEW I'd packed the old one. But where? I wanted to keep looking, but time is running out.

So finally, today, I waited well over an hour on the phone altogether ordering a new title. That's done, but I'm not out of the woods yet. When it comes, I still have to get the car registered in Michigan and THEN, I have to call or send NY proof of that registration because if I don't, they'll suspend my NY license and since Michigan reciprocates, I won't be able to drive. So it's not over yet.

At least I'll have a little break from it while I am waiting for the title to arrive.

I had a similar hassle trying to get my Michigan driver's license.

And it's been a huge hassle trying to get my address changed on everything and so far, I am striking out more often than I'm succeeding. I call the number of someplace where I need to change my address and I don't get a real person, I get a menu, and the menu options go on and on and none of them seem right. I spent over an hour on the phone listening to menus and speaking to no one trying to change my address with GM and FAILED. So I have to start over sometime after I recover from the ordeal of it. I HATE automated menus on phones. It's so un-user friendly, so unfriendly and unhelpful.

So, in addition to the car registration, I have to revisit the GM thing and I have a folder with about ten or 15 other places I still need to call. And each one now takes an hour or more. They don't provide you with an address you can simply send an address form to. They don't give you a person you can speak to' you have to fight your way through endless menus and then people look at you like you have three heads when you say you haven't yet managed to get all your addresses changed. But no one volunteers to HELP.

Well one, person did, I won't mention any names. He said he'd call for me to that one place, GM, but he never did. I can't really complain, because there are zillions of things I should be doing but amn't. OH, He says he did call and couldn't find his way through the menus. Sorry.

I know, I know, amn't is not a proper contraction, but why not. I am NOT. Amn't.

Thursday, September 27, 2007 I finally got my title and am waiting in the Secretary of state office for a turn to hopefully get my car registered in Michigan. Then I will have to deregister in NY or I will lose my license. In both places.

I also have to change my Tracfone cell phone so it has a local Michigan # and not a NY number. And close my bank accounts in NY and move them here, did I say that? I can't believe what a continuing ordeal this is.

The name-change thing may be biting me. I had to return something to Adobe (another huge hassle) and I had to fax various things and some had one name (Taitt) and some had the other (Stebbins), so I am waiting to find out if that will turn into an ordeal or not.

Late breaking news: I finally have my plates and registration. They have to be attached and distributed and I have to surrender my NY plates etc, or I'll lose both licenses, but I'm one small step closer. YAY!

September 29, 2007 And I finally sent off the info to NY State to prevent them, hopefully, from suspending my driver's license. And I just activated a new credit card with my correct name and address. This has taken several tries as the first card they sent had my new last name spelled wrong and there were several problems before that. I still have cards with the wrong name and/or address. Lots more still to do.

October 20, 2007, it’s a month from when I started writing about this, and it’s STILL not settled! I got a second notice from NY threatening to suspend my driver’s license because of suspended NY insurance. I’d already sent in the proofs and received a receipt for them, and had to do that all over again. The envelope with the new copies of the proofs is sitting in the door slot waiting for the mailman to take it away. IF it isn’t settled and they revoke my NY driver’s license, I will also lose my Michigan license and will not be able to drive. BUT THEY SENT A RECEIPT! What’s with that? I feel as if I am just treading water and making no progress here, a YEAR after I moved, but actually sinking rather than swimming.

Murphy and NPR

Why is there ALWAYS something GOOD on NPR when I am about to step into the shower or leave to walk and something BAD on (like fund -raising) when I am dressing beside the radio or washing dishes and able to listen?

I must be a WIMP

Open Wide! They said it wouldn't hurt, but it did. They said the cement was "soothing," but it was painful. I had the second, "easy" portion of my crown work done today. Ouch! It still hurts!

Sometimes I Hate Michigan

Sometimes I Hate Michigan, and Biker Buddy gets all defensive as if I hate him. I don't. I wouldn't be here if I did. But on the other hand, I wouldn't be here if it wasn't for him, so maybe it is his fault.

The latest thing is Columbus Day. At home in NY, we always got Columbus Day off and it was an annual trip to Maine to visit my brother, ever year, year after year, a tradition. Here, no holiday, no trip, nothing. :-(

He doesn't care and doesn't understand. After all, it's not his traditions that are being lost, along with contact with family and friends. His family is here.

Two good things about Michigan: no tolls on the highways (HATE the NY THRUWAY!) and the taxes are better. NY has the second worst state and local taxes in the nation, only DC is worse. Michigan is #24.

Insomnia and Apnea

I had a pretty bad night last night. I was awake a great deal. A LOT! (At least I didn’t get up.) Worse yet, I had an apnea event! VERY SCARY and upsetting! AND the CPAP was ON and running, which was even more scary and upsetting. I think my fear of apnea events (which could kill me, and which deprive me of oxygen and can kill brain cells and make me stupid) may affect my insomnia (though I still think food sensitivity is the primary cause of the insomnia. Lack of sleep makes me stupid, too! I also wonder if the WINE I had last night may have affected the sleep apnea event. (?) (By relaxing the muscles in the tongue and throat. That’s why I am not supposed to drink at night.)

Prickly, bloated and a target for Murphy

Prickly, bloated and a target for Murphy--that's how I feel sometimes! :-(

INSOMNIA AGAIN, insomnia report

Self-portrait of the artist as an Insomniac #070822br1-567: Separated from Sleep

This is probably really boring, but I am trying to correlate my insomnia with other things to see if I can determine a cause and change my behavior accordingly:

Insomnia Report, 8/22/07I went to bed at 11:38 and got up again without having fallen asleep at 12:15 AM, feeling "restless and agitated." Neither of those adjectives are quite on target. I felt a sense of "pressure to move and dislike of laying still." A sense of having to get up and move. I got up and did some things I was feeling guilty about not having done (eg: unloaded the dishwasher and put the dishes away (I did not help with that earlier because I needed to sit after the walk), collected a few things for the trip to California, etc). I returned to bed at 3:30 AM feeling tired but not sleepy. I eventually fell asleep and woke up about 7:30, feeling neither relaxed nor sleepy. Lay there for almost an hour trying to sleep again and gave up. Got up around 8:25 AM. I am estimating my sleep at 3.75 hours but it may actually have been less.

My insomnia was correlated with: a late walk, a tiny bit of dairy (1/2 tsp sour cream inadvertently licked from a spoon (old habits die hard)), mild IBS, binge eating (I ate some cheerios after I put away the dishes with rice milk)(I have not done any binge eating for a while--this came after, not before the insomnia state began), raisins, an earlier brief episode of anger that followed the raisins, an earlier brief episode of depression that followed on the heels of the anger, guilt and worry, beet sugar, eggs, corn, oats, garlic.

My insomnia was NOT correlated with: beef, crawly skin, itchier than normal skin, worse than normal bad neck and arm, eating out, eating at someone else's house, bad asthma or hay fever, soy, nuts (not the previous day, but two days before), apples, onions or shallots, nightshades, legumes.

The Proctology Salute!

The Proctology Saltute! I saw this on the sidewalk as I was leaving the grocery store and couldn't resist it, sorry! LOL!

Imsomnia 070814-15

Insomnia 070814-15 (click image to view larger)

When I picture my days and nights, I imagine working hard, accomplishing great things, loving, traveling, writing gardening, doing art, walking running biking visiting and then sleeping the sleep of the justly tired, peaceful happy sleep. I do not imagine sitting all night (literally) in a stupor, too agitated to sleep and too tired to accomplish anything meaningful, and laying about exhausted and sick during the day. Not do I imagine wasting time sitting on the toilet unable to pass anything but having to try and try because I uncomfortable with needing to go. The day dribbles away, wasted by long phone calls from distant relatives, nurses, people wanting to set up appointments. I’m so far behind on things that need attention that I fee like someone treading water and becoming too exhausted and chilled to keep my head up and sinking slowly deeper. The best (and worst) laid plans of mice and men gwyn aft awry or gwyn aft entirely.

A Reason for Hope: Blue

A Reason for Hope: Blue, by Mary Stebbins Taitt. An artpiece for Vera House.

Death, Pain and the Sliver

Sunday, at Grandbaby boy's birthday party, I was walking barefooted on Henrietta’s deck and got two large slivers in my foot, one fairly shallow and one deep. Biker Buddy dug them out with his jackknife. (I write this as I walk around the block.) He was very gentle, but it still hurt, and I cried out, much to his distress, several times. China Grandma and China Aunt laughed and laughed, not meanly, but sympathetically. My foot hurt all night and the next day, too. Biker Buddy refrained from saying I told you so. He had warned me against going barefooted on that deck, but I persisted.

I continued to go barefoot afterwards, too, but walked more gingerly. I like going barefoot.

Last night, lying in bed beside Biker Buddy, I asked, "Do you know what I was thinking about when you were digging the splinters from feet Sunday at Henrietta's?"

He said, "No," of course, not pointing out, as he might have, how he could not possibly have known what I was thinking.

So I told him. "I was thinking about my death," I said. "I was thinking about pain." I told him that my parents were stoics, and that I grew up in a culture where bravery in the face of pain was highly valued. I had my teeth drilled without Novocain, even when the dentist struck a vein. My parents were stoics until their deaths, with a few notable exceptions.

But I am no longer a stoic and I am no longer brave. Something happened that turned me into a wimp. Now, I am afraid of pain, very afraid, and because of that, I am afraid of dying. I am also a bit afraid of death, but that is another matter.

I wondered aloud to Biker Buddy as we lay in bed together, if the thing that switched me from stoic to wimp was my fibromyalgia pain. I am in pain constantly, a pain I have to live with, day in and day out. I try not to complain about too much. Other people get tired of hearing about it.

And they say horribly mean thoughtless things, like it's OK to have pain if you have it every day, because you get used to it.

NO, you don't get used to it--I don't anyway. It hurts. It still hurts. It hurts day in and day out. It hurts just as much today as it did yesterday (although it ebbs and flows, rises and falls, it is always with me.) When the pain is at a certain level, it is just as painful as it was 20 years ago. Maybe more so.

I get tired of the pain, it wears me out, is stresses me; it makes me grouchy and irritable. I don't sleep well, and that makes my tolerance to pain and irritation worse.

Sometimes I feel almost OK. When I am doing art, writing a story, working on a poem, having sex, exploring and discovering, I can forget the pain for a while. But when I stop, when I lay down at night, there it is, still with me.

"I don't think dying's going to be much fun," I say to Biker Buddy. Understatement of the day.

"No," he agrees, "I don't expect so."

"Or getting old, either," I add.

"No," he agrees sadly.

"But we have right now, and we have each other," I say. I wrap me arms around him, and he his around me.

"I love you, Biker Buddy," I say. He says he loves me and gives me a squeeze and we drift off.

I’ve made it around the block. As I walk up the driveway, a series of explosions dog my steps. Bomb bags. Yesterday, Piano Boy came downstairs from cleaning his room, all excited. "Look, Mom, look what I found!"

He waved them by me so fast, I couldn't see what they were and dashed outside.

A few minutes later, he returned. "They aren't as much fun," has said, sadly, "as they used to be."

"One of the trade-offs of growing up," I replied. One of the many small deaths on the way to extinction. Now every time I go outside, the little bombs blow up under my feet. Bang, bang. BANG. Guess I'm still alive.

* * * *

This is an excerpt from the first (or maybe the second) journal I kept on my new Ericsson computer, yesterday and today. You can view the unexpurgated and unedited version of this journal entry here and another portion of it here.

Photo by Mary Stebbins Taitt, in Piran Slovenia at an old graveyard. Click to view larger.

Evolving Love Notes #2

Here is another in the evolving love-note series. Click to see larger. See an earlier version here.

My brain tumor

I got the MRIs, finally, after many delays, to transfer them to my new doctor, and here is a shot of my brain tumor.

I've been away, cleaning my Mom's house, and now I am going camping at the Pinery for the long weekend. I will not be posting again 'til after I return.

Swamped

I've been away for a long time dealing with my mother's house and estate. There was no internet there.

I am back.

But I am swamped and it will be a while before I can return to regular blogging.

Murphy and the Pollyanna Man

I made myself a nice homemade stirfry for lunch and went out to sit and eat it at the camp table I'd set up on the edge of the driveway. As I went out, one of my favorite symphonies came on the radio and then the man two houses away came out and started vacuuming his car with a very loud vacuum cleaner.

Murphy, I grumbled to myself. The noise really bothers me, and there was a nice symphony inside. The noise set my teeth on edge and tightened my shoulders and neck.

But eventually, the man stopped vacuuming and peace returned. I thought of how if a good symphony comes on while I'm inside, I happily enjoy it. It's probably random and not a plot against me. And I was out numerous times before without having to hear the vacuum cleaner.

And that reminded me of the Pollyanna Man who used to live with us at the Lake House. Whenever anything bad happened, he'd always say, "Well, it could have been worse. " No matter how terrible something was, he always said that. Some pretty bad things happened and we used to laugh at his Pollyanna attitude. But why not? What's so bad about always expecting that you're getting the universe's best, rather than it's worst?

And I think how so many people these days don't know Pollyanna and have never read her book. It is actually a pretty good book--I liked it.

I had more to say on this topic but no more time to write right now. Except this: when I went back out to eat the rest of my lunch, hoping for peace and quiet and sunshine, a man came out on one side with a chainsaw and another on the other side with a lawnmower and when I went back in, there was some horrible music playing. Round two: Murphy 3, Pollyanna, 0. I guess it could have been worse. There could have been a nuclear holocaust outside. Remember: things can always get worse.

On the Wastebeds

I found this. Really!

On the wastebeds, near the old cars, above the State Fair parking lot, on the slag cliffs.

Really.

It's a rubber mask, very lightweight, and next time I go back if it's still there, I hope to put it in a plastic bag and take to the Heidelberg Project.

It's not something I personally have a lot of use for, but I found it interesting.

I have to hurry, before the nettles get too deep and it gets too hot to walk on the wastebeds.

Small murphyism: The phone didn’t ring all day. But when I was filling shampoo bottles for my upcoming trip and a big blurpo came out all over my hand and the bottle, the phone rang. Of course. Murphy.

click to view image (by me) bigger.

Not Quite the Inquisition

There is a form of abuse called Gaslighting when the abuser does everything in his power to confuse the abusee. It was made famous by much discussion and counter interpretations of the story, "The Yellow Wall Paper," by Charlotte Perkins Gilman. Yesterday, I was confused.

I went to my new sleep doctor, doctor Policherla, having been told I would be there for a brief consultation, and then I was subjected to nerve conduction tests because I had no reflexes at all in a routine reflex check. I was told the test was nothing, that it was gentle, that it was just a little tingle. I told them I had had it before and found it terrible, and they said Dr. Policherla was gentle and it wasn't bad at all.

It was HORRIBLE!

It was 45 minutes of receiving electrical shocks and my whole body convulsed and it HURT. It was not gentle (although the technician seemed to want to be gentle and to be apologetic) and it was NOT a little tingle. It hurt. A LOT! Just like last time, with Dr. Michael Bome.

I cried several times and afterwards. I called Keith on the cell phone and asked him to come over, but he didn't make it until it was over (or else they wouldn't let him in.)

On the way home, I was asking myself if there was something wrong with me. Am I much more sensitive to pain than other people? Am I a total wimp? This because they had told me it wouldn't hurt. I was feeling really bad about myself, and then I remembered Tom telling me about it. He described it like the inquisition, like medieval torture chambers. I was happy to remember that. I felt a little better about myself. And a lot worse about my doctors, who lied to me, telling me it wouldn't hurt. They have a sign up in their office about trust. How can you trust someone who lies to you? I think what they did was abusive. It would have been much less so if they were honest about it. Apparently, to qualify as "gaslighting," there has to be malicious intent. I'm not positive about the motivation of the staff at Policherla's lying to me, but my guess is so that I wouldn't leave. (maybe they never had the test themselves and don't know). I'm not sure if that qualifies as malicious or not, but it was still lying.

The artwork I made to represent the experience is not nearly as ugly, confusing and horrible as I felt during and after the experience. I couldn't make it ugly enough. And I don't really have time to be doing artwork or blogging. (Click the image to view it larger).

The problem is, I have neuropathy, or nerve damage, especially in my legs and feet, like a diabetic. Three different people asked me yesterday if I had diabetes. But I've been tested for it several times and the results were negative. But I do have a problem with sugar. Dr. Beeai suggested it might be a form of hypoglycemia. Whatever it is, I wish they'd figure it out before I end up losing my feet and legs like a diabetic. I hope it isn't some horrible debilitating or worse yet, fatal disease.

I have new tests set up in this never-ending cycle if tests and more tests, none of which have been helpful so far. But they have been expensive. I need to make phone calls and set things up. And I need to prepare for my trip and the Memorial service etc. I've "wasted" (spent) too much time on this already!

I will be away through the 15th probably, and off-line most of the time I am gone. Probably no blogging between now and then, or very little.

Day Three on Provigil, Honeymoon update

Day Three on the New Dose of Provigil

I feel nervous and a little agitated.  I was nervous and agitated all night.  My insomnia was much worse.  I didn't go to bed until after 11:00 and was up at 5:25 and awake before that.  That wouldn't have been so bad, I suppose, if I had actually slept between those times, but I didn't.  I was awake off and on multiple times looking at the clock.  I had a very restless night.  It was worse than the two previous nights.  I had hot flashes or night sweats, was restless, tossed and turned and thrashed.  I had back pain while lying down and IBS when I got up.  BUT I don't know if it was the Provigil causing all this or whether it was something I ate. Dr. Beeai says I may have a form of Hypoglycemia, she gave it a name but I didn't write it down and now forgot.

So now I want to look up more about that form of hypoglycemia (whatever it was) and also research the adrenals since Blue Rose suggested that might be a problem. 

I worry that my body will get used to Provigil and if I stop it I will be a little blob of useless protoplasm.

I also feel uncomfortably thirsty.  Excessive thirst can be caused by diabetes, but also as a side affect of some of my meds.  But it comes and goes.  I have a theory (right or wrong) that I get very thirsty when I eat a food I'm allergic to so that the body can flush the toxins out.  Or, what it perceives as toxins.  I have lots of theories about my health issues, but so far, few have ended up being useful.  No wait, that's totally not true.  I am feeling much better than I was, just not well.

One reason I think food might be a factor is the extreme variability of symptoms and nothing else in my life varies that much.

Honeymoon update

On an altogether different note, I am trying to make arrangements for our honeymoon, which will be over a year late.  It turns out to be significantly more difficult and time consuming than one might assume.  I've been trying for several weeks to make reservations at the Hotel Park in Ljubljana and still haven't succeeded.  This morning, in frustration, I picked up the phone and called them.  First I had to learn how to make an international phone call, which I don't think I have ever done before.  You put in a code for your country that alerts the system that it's an international call (for US it's 011, if you're in Europe, I think it is 00, but I am not sure).  Then you put in the country code and then the phone number.  Slovenia's country code is 386.  SO after all this (and spending a lot of time on line before that trying to get a reservation, I call, and the guy I need to talk to, Joze (pronounced Yo-zhe) is not there.  The guy who answers doesn't know what to do and no one is there to help him.  Aieee.  I try again to email Joze and the email comes back refused.  So I have wasted all this time and so far gotten nowhere.   At least we did finally get our airline tickets and they are in our possession.  And rental car reservation.

Day 1 of the new med-dosage

I haven't been blogging much; I'm just too busy!  AK!

Also, the new meds don't help.  I was started a few weeks ago on Provigil, which makes me nervous and agitated—it stresses me out because I feel even more overwhelmed by everything than usual.  To make things worse, it seems to aggravate my ADHD so I run around in circles doing a billion things and accomplishing nothing.

Today they upped my dose.  Hello?  I was having a hard time with it, so why not make it worse?  I'm crazier even that usual with sixteen projects all going on at once and dashing back and forth between them like a ninny.

Provigil is an upper.  I am very sensitive to stimulants.  I tell my doctor that and he says this works by a different mechanism.  Maybe, but I feel as if I had twelve cups of coffee and the crash is like coming down from 12 cups of coffee.  I read that coffee any time, even early in the AM disturbs a sleep cycle.  That's all I need.  Oh well, we'll see!

A Serving Size

I gave up desserts for Lent (even though I'm not religious) and also I am trying to limit myself to one serving of whatever I am eating.  Not 3 or 2 or even 1 and a half, one.  I haven't lost any weight at all; I've prolly gained weight.

A serving size isn't very big.  We are nearly out of food because we were supposed to shop Monday night, but couldn't.  So there was no food for lunch, no normal food and none for dinner either.  The boys will have pizza, but what will I have?  I'm allergic to pizza?

For lunch, I counted out 9 corn chips and ate them slowly.  Nine chips is a serving.  Didn't seem like much food.  I know it's not the greatest, but like I said, we're out of food.  (Real food, that is).

My New Shop

I created a new shop called The Pine Warbler to sell T-shirts, tote bags, ornaments and so on at Cafe Press. This is a ceramic ornament with my warbler painting on it. 

Provigil, CBT, and Continuing Insomnia, 070317

Near the Western Edge of the time Zone at the beginning of the new, earlier Daylight savings time, it is completely dark at 7 AM. There’s fresh snow outside. It was completely dark at 6 AM and at 4:30 AM. I had insomnia again. Not the worst insomnia, but insomnia never the less. It’s a boring topic because it happens so often, but it’s still a problem. This version of insomnia came with restlessness and itchy skin verging on being crawly. I don’t like it, to say the least.

Since I didn’t get to sleep until after 1 AM and was awake before 4:30, I got less than 3 and a half hours of sleep. And that was restless and disturbed. My concern is that besides being tired and unable to concentrate, I may get cranky and I hate it when I get cranky! I'm afraid my sweetie will get angry and stop loving me; that he'll confuse my condition with me.

I’d like to know what causes this to happen, why I sleep better sometimes and worse others. I took the exact same meds. I ate similar foods to other days when I felt fine. I did have a late-night snack because it was recommended for insomniacs to have a small late-night snack of turkey, potato. I had a few corn chips and potato chips, two slices of turkey sandwich meat and a few raisins—it was supposed to help me sleep. No such luck.

I am on Rozerem and Provigil now, a trial. I think generally I am sleeping a little wee bit better but not last night. I am unhappy about being on meds when we don’t know what the long-term effects will be. The Provigil made me wildly nervous and agitated at first and my insomnia was worse. But now it doesn’t seem to do that much. The combination of the two certainly does not STOP insomnia!

I’ve been reading about Cognitive behavioral therapy, or CBT1 for Insomnia. It’s supposed to work better than sleeping pills. I’ve been trying some of the techniques and they seem to help somewhat. (I still think I have a physiological problem caused by food sensitivities or something.) Some of these are a bit counter intuitive: Sleep restriction (for example), getting up after 20 minutes of not sleeping and reading for 20 minutes, and cognitive restructuring.

Here are some questions to ask for cognitive restructuring:

1. Is this thought really true?
2. Am I overemphasizing a negative aspect of this situation?
3. What is the worst thing that could happen?
4. Is there anything that might be positive about this situation?
5. Am I catastrophizing, "awfulizing", jumping to conclusions, and assuming a negative outcome?
6. How do I know this situation will turn out this way?
7. Is there another way to look at this situation?
8. What difference will this make next week, month, or year?
9. If I had one month to live, how important would this be?
10. Am I using words like "never", "always", "worst", "terrible", or "horrible" to describe the situation?

When I am laying awake worrying about things, I am supposed to ask these questions. I am supposed to challenge my negative automatic thoughts (NATs). But that isn’t so much what I do when I can’t sleep—what I do is try to solve problems. I try to work out solutions to things that are bugging me, rather than just “awfulizing” things. And then I try to tell myself, I don’t need to solve this now, I can solve it tomorrow. But I know how that works, LOL! I rarely do solve things because there is too much to be done.

I am supposed to use the "double standard" technique developed by Dr. David Burns. This technique is based on the idea that, when it comes to explaining adverse events, we are often much harder on ourselves than we are on our friends. We operate on a double standard: we have realistic and fair standards that we apply to others whom we care about and we encourage them to reframe their reactions to negative events. In contrast, we set unrealistic standards for ourselves when we explain stressful events to ourselves.

To use the double standard techniques, I need to examine my NATs and then ask myself: "Would I say this to a close friend with a similar problem? If not, what would I say to him or her?". The idea is to reframe NATs by giving myself the same encouraging, empathic messages I would give a friend. It certainly is true that I am harder on myself than I am on others in some respects. (In other respects, I am harder on others, LOL!)

It doesn’t seem, however, that this aspect of the technique applies that well to me. I’d like to short circuit the worrying altogether, at night, anyway. It seems that if I were sleeping to begin with, I wouldn’t be worrying!

Sometimes, when I am lying there wide awake, I plan a poem, a story or an art piece. Then later, I actually do it. But I only do that because I am awake and bored. Of course, once I get started thinking about it, I’m engaged and less likely to sleep.

So who wants to waste time worrying about worrying? Not me. And if worrying makes the insomnia worse, I probably shouldn’t worry about the insomnia, either. So there. (Hard to not when you're laying there awake hour after hour, though!)

(PhotoArt piece: Measuring the night. By me. Brand new. The orginal photo was from a gravestone--measuring a person's life, I guess.) 

Provigil

(image from Belle Isle conservatory by me)*

This is day four. I think. I'm so tired I can't think right. Dr. Guyer started me on Provigil. It took a long time—about three weeks, from the time he prescribed it until I actually began taking it, because it is a controlled substance. I had to get prior authorization, which took a while, and give out my precious social security card to the state and so on. What a pain.

I asked why it was a controlled substance and was told at the Pharmacy that it was "a super speed." This annoyed me—why would someone give a super speed to an insomniac? I can't drink coffee or tea or eat chocolate or even ginger or mint tea, all of which are stimulants, so why would Provigil, which is a super stimulant, be a good choice for me? I was not at all eager to take it. Dr. Guyer had repeatedly suggested it and I had repeatedly refused it and finally he told me to try it. So I am.

The first day I started it, I re-researched it, after having done so before, when he'd first suggested it. What is PROVIGIL, and what does it do? PROVIGIL is a medication to treat excessive sleepiness caused by certain sleep disorders. These sleep disorders are narcolepsy, obstructive sleep apnea/hypopnea syndrome (OSAHS), and shift work sleep disorder (SWSD). I have obstructive sleep apnea. I used to think I had narcolepsy, because I fell asleep at the drop of a hat. That was before I got the CPAP.

When I read the THE GOOD DRUG GUIDE (a good place if you want positive information about drugs), I had some ideas why my doctor prescribed it.

1. " ...modafinil ('Provigil', 'Alertec', 'Vigicer', 'Modalert', etc) is a memory-improving and mood-brightening psychostimulant. It enhances wakefulness and vigilance, but its pharmacological profile is notably different from the amphetamines, methylphenidate ( Ritalin) or cocaine. Modafinil is less likely to cause jitteriness, anxiety.
2. Current research suggests modafinil, like its older and better-tested analogue adrafinil, is a safe, effective and well-tolerated agent.
3. Modafinil is used experimentally in the treatment of "atypical" depression. Atypical depression is marked by hypersomnia, hyperphagia [over-eating], low energy, and rejection-sensitivity. The syndrome is actually quite common. The results of preliminary studies have been encouraging, but large-scale trials are needed.
4. It is used "off-label" to treat fatigue, depression, attention deficit hyperactivity disorder, and sleepiness caused by other prescription medications

Notes on the notes:

1. I could use some memory enhancement and mood-brightening (who couldn't?), but I think my memory failures and mood depression is due primarily to LACK OF SLEEP! And I am experiencing jitteriness, nervousness.
2. If it's so safe, why is it a controlled substance?
3. I may have hyperphagia (overeating), but I do not have hypersomnia: Hypersomnia is characterized by recurrent episodes of excessive daytime sleepiness or prolonged nighttime sleep. Different from feeling tired due to lack of or interrupted sleep at night, persons with hypersomnia are compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. I was tired during the day but not sleepy. I was never sleepy, day or night. (Before Provigil.) I almost never nap, because I never feel sleepy.
4. I do have ADHD!! But this drug so far seems to make it worse, not better. Maybe because I am sleeping so poorly.

I also have insomnia and am very sensitive to stimulants. Dr. Guyer told me that Provigil works by releasing histamine in the brain. Histamine wakes you up. Antihistamines make you sleepy. He said it was fast-acting. The literature says it normally takes 12-15 hours to clear the system. If I take it at 8, I should be able to sleep at 11. But I may be overly sensitive.

I also worried the histamine would make my allergies worse, and maybe my fibromyalgia, too, because there is a histamine link with fibromyalgia.

The first day I took it, I basically didn't sleep all night. I slept a little better the second night, but not well, and a little better last night, but still not well. Overall, though, it's been a long time since I've had a good night's sleep and I'm starting to get stupid with it.

My fibromyalgia, which Dr. Guyer repeatedly insists, like my other doctors, is linked to sleep (yes, we do know that, theoretically), but my fibromyalgia, in spite of very bad sleep, has been generally improved. Not good, but better.

The most common side-effects observed with modafinil, as compared to placebo, when prescribed in the recommended doses for the approved indications, are as follows:

• Common
• Headache (34% vs 23%)
• Nausea (11% vs 3%)
• Uncommon
• Nervousness (7% vs 3%)
• Insomnia (5% vs 1%)
• Anxiety (5% vs 1%)
• Anorexia (4% vs 1%)
• Dry mouth (4% vs 2%)
• Rare
• Chest pain (3% vs 1%)
• Hypertension (3% vs 1%)
• Tachycardia (2% vs 1%)
• Vasodilation (2% vs 0%)
• Dizziness (5% vs 4%)
• Paresthesia (2% vs 0%) (pins and needles)
• Somnolence (2% vs 1%) (drowsiness)
• Pharyngitis (4% vs 2%) (sore throat)

Additionally, gastrointestinal distress, which may be alleviated by taking the drug after a meal, aggressiveness and skin irritation have been reported, but are rare.

Most side-effects subside after a few weeks without reducing the dose. Only headaches and anxiety have been shown to be proportional to dose, and these may benefit from a temporary reduction.

I have definitely been experiencing nervousness, anxiety and fairly severe insomnia. And some dry mouth. I was a little worried about the tachycardia because I've had some scary incidents of that. But so far none with the Provigil, but a little flutteriness. The first day was the worse with also a tight chest and the worst nervousness. That part seems to be settling down a little. My allergies do seem to be remotely worse, but insufficiently worse to be a real problem.

The drug seems to wake me up as it takes effect in the morning, but I am still tired from lack of sleep and I feel and behave differently than I would if I just had a good night's sleep. I'm grumpier and can't think as clearly. It wakes me up in the sense of making me a little more alert, but being awake was NOT the problem I had in the first place. I wasn't sleepy during the day. I was tired. Once the drug takes affect, I do feel somewhat less tired. But I'm not sure that the benefit is worth filling myself with controlled substances.

When I started this piece, the drug hadn't taken effect. I said, I'm so tired I can't think right. I do feel better now. However, in the past few days, my thinking has been impaired by tiredness (unless it was impaired by the drug itself.)

If Rozerem, which I am still on, is a downer of sorts and Provigil and upper, than I am on uppers and downers and that doesn't seem so cool.

*(image to represent the strangeness of artificial uppers and downers compared to the real thing of normal healthy sleep and waking.)(an example of how my brain is failing to function properly is that I cannot think of the name of this flower right now, even though I know it perfectly well. tiredness or early alzheimers?)

The Body Knows

The Body Knows (Touching the Moon), by Mary Stebbins Taitt, from a prompt on Poetry Thursday. I did a poem and a prior piece for this prompt but them wanted to play with it more. This is another of a series of variants I made, each one somewhat different than the rest. 

Insomnia

Going to my insomnia doctor today and made him this extended version of an earlier picture. 

Notes for Dr. Applegate

I am going to see on Allergist, Dr. Applegate, on Thursday the 15th and am hoping she will discover some things I can avoid that will make me healthier, or ways to treat the allergies to make them less severe. Here are my notes for her so far:

Notes for Doctor Applegate, Allergist

Q: What is the difference between an “allergy” and sensitivity? Do your tests test for both?

Q: What causes allergies? Is there any way to avoid developing or reverse them?

I have asthma, hay fever, insomnia and fibromyalgia, all of which seem to be moderately to severely affected by certain foods. I also get skin rashes from medications, from some skin products, from poison ivy and sometimes for unknown reasons. Some foods (coffee, chocolate) also negatively affect mood and personality.

I first started having joint problems and hay fever at age 16 and asthma in my late 20s.

1. “Known” Allergens and/or Sensitivities:

• Food
• Dairy—asthma, joint pain, hay fever
• Soy—joint pain, headache, IBS, insomnia, fibromyalgia
• Airborne
• Ragweed—asthma, “hay fever”
• Cigarette and wood smoke—asthma, “hay fever”
• Dog dander—asthma, “hay fever”
• Dust mites—asthma, “hay fever”
• Feathers, bird dander—asthma, “hay fever”
• Drugs
• Penicillin—hives (large pale swollen bumps)
• Theolair—red, itchy rash (small red itchy bumps)
• Wellbutrin—hives and two different sized rashes and breathing difficulty and terrible weakness and feeling sick and “deathly”
• others that I’m not able to recall at the moment

1. Suspected Allergens and/or sensitivities

• Food
• Beans, legumes
• Tree nuts and peanuts
• Bananas

1. Possible Allergens and or sensitivities

• Food
• Apples
• Onions
• Ginger
• Peppermint
• Seeds (eg, sunflower seeds)
• Beef, red meats
• Wheat, white flour
• corn
• Cane sugar, sugar

I am sure there are others because I often get sick and have no idea why

Insomnia!

After a week of fairly bad insomnia, but not so bad I was up out of bed--at least I was lying there relaxed, I had a worse yet night where I was actually up out of bed for several hours becase I was too restless to lie there.

I get tireder and tireder, crankier and crankier, grouchier and grouchier. I lay there wondering if I should take an ambien or not, and what caused the worsening. Something I ate? Or just an accumulation of overtiredness from a week of insomnia? Or what?

Bean Sprouts and Tapestry Moon

I have been too busy to blog the continuing saga of my struggles with insomnia and fibromyalgia.

I gave up taking the Ambien. It seemed to be making the fibromylagia worse. I continued taking the Rozerem. In combination with careful eating, it seemed to be making the sleeping and fibromylagia somewhat better.

Last night I made two separate stir-fries, one for Keith and one for me. Keith likes pea pods, but I'm afraid to eat legumes, so I made him one with and me one without, but then I stupidly put bean sprouts in mine. What was I thinking? Hello--legumes!!!

So last night I slept less well, much wakefulness, and woke with worse fibro. I'm blaming the bean sprouts, but of course, it could have been something else. We shall, as Keith says, "foon sind out" as I will be going to the allergist in a week and dropping lots of money--hundreds and hundreds of dollars--because it isn't covered by my health insurance. You can take all the pills you want to cover up a problem, but you can't find out what's causing it.

The artwork is supoosed to be a representation of insomnia, but it's too pretty. Oh well, I like it anyway. I may fiddle with it more. What is it really? (I mean what was it before I messed with it?) Click here if you're curious.

What we're supposed to look like

Half-naked, skinny and available. Sexy. (Our heads and brains aren't very important!) These are store-window shots next door to the Lobster Pot from our store tour yesterday. It's near where I live, I could walk there.

In the top one, the reflection is me, taking the picture.

I've been too busy to blog much lately (about my troubles, which continue) and am too busy to be doing this so bye for now!

P365-07B&Ph