Friday, January 26, 2007

Complaints of the day

So if you are here looking for the complaints of the day, you're in the wrong place. I inadvertantly posted them to No Polar Coordinates instead of here. Sorry.

P365-07B (there) Posted by Picasa

Wednesday, January 24, 2007


I don't seem to be healing very fast.

I feel worse rather than better.

About my mother, I mean.

As far as my drug regime and fibromyalgia, I got a message today, a RECORDED message from MEDCO that they had approved my taking some drug. They didn't say which drug. I haven't got the energy to call and ask. I'll wait to hear from the doctor. I've been making too many calls as it is.

The night before last I took one Rozerem and one Ambien. Yesterday I felt fairly well and pain free until a few minutes after I got back from Graham's piano lesson--I had to drive him 'cause Keith had to work late--and I had ONE SIP of Keith's beer and immdiately felt ill and just got worse and worse and worse as the night progessed. I was very sick by bedtime. I have no idea if the beer had anything to do with it or if I had just reached some threshold of exhaustion or some belated reaction to something I'd eaten sometime int he past. You can bet there won't be any beer sharing tonight though!

The photo is part of my sidewalk series, which is getting quite long. I have only posted a tiny portion of them. I just don't have time.

P365-07B, Ph Posted by Picasa
It makes me happy to have something of mine or Grammy's or Grandpa's or Aunty Ann's used. When Second Daughter sends a picture of herself with something that belonged to my mother, I get a little shot of pleasure and endorphins. I need those little pleasures because I am feeling very sad and low right now.

We left a whole houseful of Aunty Ann’s stuff behind--makes me sad. She wanted me to have it but I already have way too much, and not enough (wrong stuff, LOL). Still, the few things I did take bring me great pleasure. I remember our good times together singing around her piano and I am so glad that First Daughter and Guitar Boy have the piano.

When I throw things away, it makes me sad. A great heaviness comes over me and there's been so much of it lately and more to come. Now, with Mom gone, we have her whole house to clean, her stuff and Pa’s too. I know it has to be done, but it's a physical pain. Literally.

There's a little delight in even a momentary use of something that belonged to one of those who have passed, or something of mine I can no longer use because I’ve gained too much weight or because we have duplicates. Notice me pulling up the sides of my mouth, see, I’m smiling now. SMILING. now.

(me, coming back fromt he doctor's on the day after my Mom died, in front of my "new" house.)
p365-07b, Ph Posted by Picasa

Tuesday, January 23, 2007

The Drug Saga Continues, and the wisp of hope flickers

Dr. Guyer had me on Rozerem and Ambien together, and the combination seemed to cause a significant decrease in my fibromyalgia pain, which had gotten very bad. I was operating on old Ambiens and sample Rozerems, but when they ran out, Notre Dame Pharmacy and Medco (my drug insurance) wouldn’t give me new meds, so I reported this to the doctor. There has since been an ongoing furor with Dr. Beeai, Dr. Guyer, Dr. Guyer’s nurses, Medco, etc.

Meanwhile, I was supplied with a few samples of Rozerem and I have a very few Ambiens left, and last night, I took a Rozerem and an Ambien together again after a short hiatus.

I need to point out that yesterday, without Rozerem, and with half an Ambien, I was worse. Significantly worse. I was somewhat worse during the day and very bad last night. It isn’t JUST the pain, I also feel sick, and tight and stiff, and my belly hurts and so on. I’m uncomfortable and unhappy. And cranky and grouchy and I don’t like anyone or anything. I want to curl up in a prickly ball and die.

This morning when I woke up, there was a deep dull pain in my hip. And my neck hurts—a little—annoying, but not horrendous—yet. I won’t know until the end of the day if this was a good day or a bad day health-and-pain–wise. I have to walk and try to function before I know that. Hope has risen again. Hope that at least today I won’t have as much pain and I can function somewhat normally. We’ll see.

I really wish to function normally and healthily without drugs. But unfortunately, I don’t. I’m having a great deal of angst over taking all these drugs. I wish I could find a healthier solution.

Photo by me. Yesterday, at the clinic, hassling over drugs.

P365-07Ph&B I'm taking a picture a day, and I suppose I could back-post this to yesterday, but I'm not. It's yesterday's picture and todays blabbing. (As always, click on the image to view larger.) Posted by Picasa

Friday, January 19, 2007

The rise and fall of Hope

Some Zen masters advise to abandon Hope, because Hope is a cruel master, but it is easier said than done.

My doctor, Dr. Guyer, wanted me to try combining Rozerem and Ambien, a sort of risky- sounding business to me, since they are both sleep inducers. But I have terrible insomnia and I agreed to try it. I agreed to try it not only because the insomnia itself is so terrible, but also because I am in constant pain from my fibromyalgia. The fibromyalgia seems to be linked to the length and quality of my sleep.

The night before last, I took one Ambien and one Rozerem, as directed by Dr. Guyer. I fell immediately into a deep stupor without having put on my CPAP. Keith had a terrible time rousing me to get me to put on the mask. I finally picked it up but fell asleep again without putting it on. "It was as if you were drugged," he said. Of course, I was drugged.

I slept most of the night, but I was still tired and sleepy the next day, maybe just as much as I would have been had I been awake most of the night.

The good news was that my pain subsided for the first time since I moved to Detroit. It didn't go away entirely, but almost. It backed into the corners. It nibbled at the edges. But most of the time, I was nearly pain free. It felt amazingly good!

So, then why would I attempt to change that in any way? I backed off a little and last night, I took a half an Ambien and a Rozerem. I did that because I felt groggy all day and drugged at night. I didn't fall asleep as quickly, I woke up more often, and I got up earlier. I still felt tired all day. And I had pain, and the pain worsened and worsened throughout the day so it is quite bad right now.

Of course, I am very sad and disappointed. Crushed even. The rollercoaster of hope in the face of chronic pain.

But I don't think it was the half an Ambien that made the difference. It may have been, but it may not have been. For one thing, I've been on Ambien trials before, and it has never worked well for me. It will sometimes work the first day, but then its effectiveness subsides and disappears. For another thing, sleep is not the only element in my fibromyalgia pain, and I think I may have eaten something that is causing the pain. I don't really know that, of course. And I have no idea what. One reason why I suspect food is that I am also really hot, sick hot, which is a reaction I often get when I eat something I'm allergic to.

All I know is, I am sick again, and I am depressed to be in so much pain.

To further complicate things, when I went to pick up my prescriptions, I discovered that Medco, my prescription insurance company, doesn't cover Ambien and Rozerem. So, even if it is working, it wouldn't matter, because I can't have it. Not only that, but I have not been able to locate the information that tells me what drugs I can have. Not that I even want to take drugs. I don't. I just want the pain to go away.

I have one Rozerem left from the samples the doctor gave me. I am going to take it tonight with a whole Ambien. I hope I feel OK tomorrow. We are planning to go visit Gail. I want to feel OK and not be in pain. I always want to feel OK and not be in pain. But it is even worse to be in pain while visiting others and feel that you are a burden on them because of your pain. I'd better put my CPAP on before I lie down, though the effectiveness of the Ambien may already be severely diminished. But, just in case it does work, I want to be ready.

To complicate things even further, still further, I am getting conflicting advice. My sleep Dr. Doctor Flintrop, told me to avoid taking sleeping pills whenever possible because it disturbs your sleep rhythms and patterns and you get fully restorative sleep. He and several of my other doctors all told me Ambien can be habit-forming and not to take it more than a week at a time. But Dr. Guyer says new research shows it's not that bad and that it's OK to take it on a long-term basis. When I get conflicting information from my doctors, who am I supposed to believe?

Meanwhile, tonight I am making apple pies. Keith is helping and just went to the store to grab a few more apples. Graham has gone to a sleepover. I haven't walked yet. I have to get the pies in the oven and go out and drag myself around the icy cold streets with my wretched pain. Sorry. I'm not looking forward to it.

It's not a Whiney Wednesday, it's just a regular day. Friday. A no flower Friday? No photo Friday?

Anti-white: I feel really really bad. But, check out: this cute little guy. Read about him. I need to put my problems in perspective. Sometimes, it's hard to do when you're in pain.

Thursday, January 18, 2007

progress report at 10:53 Am

I finally got my exercises done and made my bed, both for the first time since my mother died the day before yesterday, and I am headed downstairs to make breakfast now.

meds, confusion

In all the confusion and phone calls this AM, I forgot to take my meds.  I just took them at 10:07 which means no breakfast til 11:07.  Aiee.  OK, off to do the fibro exercises now.  NOW, I hope.


or maybe not. Posted by Picasa

Monday, January 15, 2007

Insomnia Again

Sometimes I have endless dreams of walking forever through a twilit scene. I go on and on and on and nothing changes. But I can't have endless dreams when I don't sleep.

This photograph was today at Belle Isle. The woodland trail we were following came out near the old abandoned zoo. We turned around shortly after this and went back into the woods. (Keith took this--click on it to see it larger.)

I am awake. I am awake and up and out of bed because I lay awake for hours and could not sleep. It is after 2:30 AM and I have not slept at all, not one single wink. I took Rozerem (I think Dr. Guyer pronounced it roh-ZAIR-um) before I went to bed. About half an hour before, as instructed. And I felt sleepy, but I felt just as sleepy before I took it.

When I lay down, I woke up. (This is fairly common for me). I felt tired, but not really sleepy. A couple times, I felt as if I were drifting to sleep, but I did not sleep, and was roused again to full wakefulness. I got bored and restless and itchy. I had to get up. It is boring to lie awake hour after hour in the dark listening to your husbamd sleep while you cannot. Sometimes, I'm relaxed anough to just lie there and rest, but often I get jittery and have to get up and move. The Rozerem does NOT seem to help. In the time since I've been taking it, occasionally, it does seem to help--last night for example--I felt restless when I went to bed. I was thinking I will never get to sleep. Suddenly, I felt sleepy, and fell immediately to sleep. Later, I woke up and could not sleep. But at least I slept for a while. And when I did wake up, I was at least relaxed enough to stay in bed and rest.

OK, so here is my question: Now what? What do I do tonight? Do I just stay up? Can I take another Rozerem and try again, or is that dangerous? Can I take an Ambien? Or can that not be mixed with Rozerem? Can I take a Tylenol PM? Or do I just write off this night?

Tomorrow is a holiday. Keith and Graham are home from work and school. If I don't sleep at all, I will be a basket case. I will be cranky and grouchy and unable to enjoy their company and will probably ruin their day as well as my own.

Here's my next question: What caused this? What causes my insomnia? Is it something I eat? Was it the apple pie? Too much carbohydrates? I had gumbo for dinner, and I have eaten that without a problem before, but this was beef gumbo rather than chicken gumbo? Was it the beef?

I would like, rather than attempt to medicate the problem, to find out what causes it, and see if that cause can be changed (allergist, diet?).

(Project 365. Does a post about insomnia count? Is that writing? I am not sure I want to commit to writing, posting, drawing, painting, photographing or anything else every single day. Because which of those do I do each day? And why would blogging take precedence over living? Would I blog a writing piece, a photo piece and an art piece each day? Phew! I'd have no time left? Any ONE of my creative endeavors? Or what? Confusing. And would I be resentful and not want to do it at all if I thought I had to do it every day?) Posted by Picasa

Monday, January 08, 2007

Wolcott Mill and Rezerem

Yesterday, Keith told me I had to decide where to go for our walk. I thought that was a bit bratty of him--I'd prefer to decide together. I did some quick internet research and located some information on Wolcott Mill Metropark, where I'd never been. Turned out he hadn't either. Well, we loved the place, but we didn't get a walk because what we got instead was a tour. Which was nice. But they close at 5 so then we had to leave without a walk and walk the old neighborhood loop we always walk. BO-ring.

I've had three more nights of Rezerem, and so far, I'm not inpressed.

Night 2 I fell asleep right away, which is what it's supposed to do, but then was awake from three to four and from 5 to 6 and about a hundred times between and Keith and I took a nap together in the afternoon--unheard of! But without the CPAP, so it didn't do much good.

Night 3 was a repetition of night 2. Night 4 was worse yet--I didn't even fall asleep. It was a regular insomniac night. I was awake a lot. I spent a long long long time falling asleep and then woke up a zillion times.

See this image in sepia.
See this image in blues.Posted by Picasa

Friday, January 05, 2007

Coming back from the doctor

Coming back from the doctor yesterday with my new Rozerem. I walked back. This is the elm tree in front of our house.

I was overly warm in just a sports jacket! Posted by Picasa

6 jelly bellies?

Last night Graham was eating jelly bellies he'd gotten for Christmas. He gave me one Pina Colada, one pink lemonade (which consisted on two small beans) and one smoothie that consisted of 3 beans. I had a grand total of 6 jelly beans. Could they be responsible for a sleepless night?

First night on Rozerem

Rozerem is supposed to help you fall asleep.  Last night, I fell asleep very slowly, woke up often, and was wakeful and insomniac in the wee hours and morning when I usually finally get some sleep.  I had a BAD night.  All in all it was a failure so far, I definitely slept worse last night than usual.  However, it is possible I ate something during the day that made my insomnia worse.  The Rozerem did NOT help overcome that, if that was the case.  :-(

I wasn't really holding out a lot of hope because my experience with drugs in the past has been bad, but even so, I am disappointed.  I'm very tired and will probably have problems getting much done.  I'll porbably feel rotten all day (wahn!)

Thursday, January 04, 2007

Report on Dr. Guyer visit Thursday, January 4, 2007

Today I went to see Dr. Guyer.  He is a Psychiatrist.  I was referred to him by Dr. Muna Beeai, my new primary care physician for my ADHD.  He practices at 131 Kercheval.

I was called yesterday and asked to come in at 10:45 AM to fill out paperwork for an 11:00 appointment.  I left home at 10:21 AM and walked to the office and arrived at 10:44.  I was given sheaves of paper (TONS) to fill out and sign and my insurance card and driver's license was copied.  Then I waited until after 11:30 and was called in by Dr. Guyer himself. 

Dr. Guyer seemed nice to me.  I liked him.  He took a short oral medical history relating primarily to the ADHD.  Then we talked about meds. 

I would prefer to try to find lifestyle ways of approaching my health wherever possible, to minimize invasive meds and maximize positive healthy lifestyle changes.  Meds always run the risk of long and short term adverse reactions and side effects and with my allergies to many meds, I would prefer to avoid them wherever possible.  I was disappointed that both Muna Beeai and Dan Guyer talked first about meds.  But I think there are two reasons for this.  1)this is what our healthcare/health "insurance" system expects and requires:  a quick consultation and prescription of something to fix/mask it, and 2)the actual causes of the problems I have are probably not within the area of expertise of these doctors.  I am of the opinion (rightly or wrongly) that most of my problems are caused by food and substance allergies and that I probably need to see a competent allergist.  (I realize this may not solve the problem either, but taking a med to mask a reaction to an allergy doesn't solve the problem, but just adds a new problem while partially masking the old one.)

Unfortunately, I don't remember the names of all the meds we talked about.  One was pro-something, not provera, provita or ? and worked on the histamine center of the brain to cause a release of histamines.  It is a wakefulness drug, but not a stimulant.  I had several concerns about this.  Dr. Beeai was just saying I should be on an ANTI-histamine, because of my many allergies.  And histamine is associated with fibromyalgia.  One test for fibromyalgia is the histamine scratch test.  So adding histamine could exacerbate my allergies.  Also, I don't have a problem with wakefulness—I am almost always wakeful, including all night.  I have a problem with tiredness and an inability to release wakefulness in order to sleep.  I am almost always wakeful, almost always tired, but rarely sleepy.  Tired and wired.  He also suggested trying a combination of things, but I said that because of my many negative reactions to drugs, I would prefer to try one thing at a time and then if I tolerate that well, add another.  He agreed that that made sense.  I'd really prefer not to take any drugs at all.  Finally, he decided to give me Rozerem which is a sleep aid that works on the melatonin receptors in the brain.  It helps a person fall asleep, but doesn't keep them asleep.  There's supposedly no hangover like with Ambien CR and it is supposedly wholly nonaddictive.  He gave me samples and I am supposed to go back in two weeks.  My next appointment is Wednesday January 17, 2007 at Noon, room 390.

I had to sign a paper when I arrived saying I would be responsible for whatever fees the insurance didn't pay and another paper for today's charges, which looked like they were $314.00.  Since with our medical insurance, we apparently have to pay HALF of the fee, that would be $157!!!!  They did not ask for any money now so I assume we will be billed.  It seems like a lot to me.  Unless it really HELPS (and I have my doubts, to tell you the truth [nothing against Dr. Dan Guyer who seemed nice and competent]), it might be financially expedient to not go.  I can remember when I used to go to the doctor as a child and the whole fee was $10—not the copay, the whole fee.  In total, for an office visit.  I have a lot of doubts about all this medical care helping me in any way.  I hope those doubts are wrong, because otherwise, it's like flushing money down the toilet. 

After the appointment, I walked back home again.  Because I walked around the block the long way coming back, the whole walk was about 47 minutes.  Thus, I do not have to walk again.  I could, however, walk for pleasure. 

I will begin taking the Rozerem tonight.  I will report back.

Wednesday, January 03, 2007

The mask of Fibromyalgia

Keith says he can always tell when I am having a fibro flare-up even when we are visiting and I am trying to put on a good face. I can't be entirely successful at hiding the pain, even when I try hard to be cheery.

I did this drawing in crayon while visiting Neil, Laura, Rachel and Nathaniel. The kids were all drawing too. Posted by Picasa

Monday, January 01, 2007

Obtuse Angel

I was sick all day. Bad fibro, lots of pain, exhaustion, chill. We went for a walk at Detroit Metrobeach. It was dark and windy and chilly. I was chilled. I'd already been chilled, and the walking did not warm me up as it usually does.

Keith was an angel all day, loving and attentive and sweet. Made me feel guilty for being so angry with him last night.

After all, how important is it?

One of my many problems is that I am a poet. I see things as symbolic. I wanted that moment that we turned into the new year to be special. To be love. To be us. To stand for what I wanted to new year to be like: LOVE.

But every moment is turning us into a new year. And he gave me lots of loving all night and all day. If that one moment was ruined, the rest were certainly sweet.

He's the angel.

Maybe I'm the one who's obtuse. I'm certainly no angel! Posted by Picasa


HAPPY NEW YEAR! We hope you have a wonderful 2007. Best year yet. Posted by Picasa

Grateful (sort of)

OK, he may not have an ounce of romance or be willing to please me by paying attention to what might make me happy, or caring about matters of the heart, but he is still the best husband I ever had.

I am grateful that he
  • loves me (I guess, sometimes it's hard to tell!)
  • that he doesn't beat me
  • that he isn't literally mean or nasty to me
  • he's not abusive to me (except by torturing me with certain insensitivities)
  • is willing to take a turn cooking
  • works hard and long
  • is smart in other ways (even if he is stupid romantically much of the time)
  • shares a lot of interests with me
  • smells good
  • is cute
  • is nice to hold (when he doesn't disappear into the bathroom at the crucial moment)
  • is willing to help in the kitchen
  • buys me nice things sometimes like saddlebags for my motorcycle
  • rubs my feet sometimes (like tonight at Neil and Laura's)
  • IS nice to be with and good company when he isn't busy being stupid

Midnight on New Year's Eve

I wanted to be in my husband's arms at midnight. Not making love, just in his arms. (Although making love would have been nice too). But at 11:58, he got up out of bed to go pee. He did not come back until 12:04. By then, I had gotten up and left. It was the second time he walked out on me tonight. He must be the world's densest man. With the world's worst timing. I can live without roses. I can live without flowers. I can live without candy. I can live without perfume. I can live without jewelry. But does he have to be STUPID? Or did he do it on purpose just to be mean? I mean, he SAYS he loves me. Is he lying? And if so, why?


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