Saturday, August 29, 2009

Finally, a reason (or 101) to go to Wal-Mart! 

I've seen versions of this before, and it always cracks me up. One of my Facebook friends posted this one:

101 Fun Things to Do at Wal-Mart

Have been poking around the Disney cruise website, gathering info for the trip. Need to call them to clarify whether or not I can bring Boost on board, whether supplements have to be in their original containers, stuff like that.

Friday, August 28, 2009

It's about time! 

Finally, SEVEN YEARS after I first contacted Oprah about doing a story about fibromyalgia, Dr. Oz does the honors. Not thrilled with the emphasis on exercise as treatment (doesn't even mention post-exertional malaise) or on depression as a symptom (there are plenty of us who AREN'T depressed), but some attention is better than none....

Dr. Oz - Treatments for Fibromyalgia

Just wish this had been featured several years ago, when Oprah had more credibility. But I'll take what I can get.

Monday, August 24, 2009

Stay In Bed Day 

Too bad I missed the actual date, which was August 10, but these videos should get you to thinking.

These were produced to bring awareness to mitochondrial disorders, but they could apply to just about anything that keeps one bed bound.

Trailer for latest Michael Moore venture.... 

Boy, he got this done quick! Very difficult for documentaries on current events to still be current by the time they come out.

Sunday, August 23, 2009

Now we're GETTING somewhere! 

Ricky Buchanan interviewed a woman with a great idea: virtual vacations! This is mainly for people unable to physically travel, but I suppose anyone could use it....

Holidays Without Traveling

Speaking of the Four Walls, No Limits site, I wrote an article for it. Hope she can use it.

Thursday, August 20, 2009

Grumpy about ANOTHER med switch.... 

I have to start taking Synthroid again tomorrow because Armour is no longer available. Apparently, because natural dessicated thyroid has been used to treat hypothyroidism for over 100 years, it pre-dates the FDA and thus didn't go through the usual round of testing before it was prescribed. So now if it is ever to be approved again, it will have to go through clinical trials and all that before it is available again to the public. But how can it not be considered a "proven" medication if it has been used for 100 years with far fewer side effects than a lot of these new meds?

NOT HAPPY. I tried all the synthetic thyroid meds years ago, and while they did put my TSH back to a normal, they alleviated NONE of my hypothyroid symptoms. It was like having a double dose of fibromyalgia, I kid you not.

Only Armour got my blood levels right AND resolved the symptoms. I took it with absolutely zero problems for five years. And it was actually cheaper than my co-pays.

Hoping like crazy that the hypothyroid symptoms don't return, because drop-dead exhaustion (honestly, it was like vampires had sucked all the blood out of me), uncontrollable weight gain, edema of the hands, hair loss and depression really SUCK. Plus, my in-laws booked a non-refundable family vacation last week, and I'm scared to death that now I might not be healthy enough to go. I have worked SO HARD to be as healthy as possible, and I am fed up with having to give up meds that work and swap them for ones that either don't work or have side effects.

I'm on 13 meds on a regular basis, and I've had to change 9 of them since 2006 due to health insurance limits or exclusions, FDA rulings, and docs who can't agree how best to treat my ailments. In the past, when I could still work, I would just go ahead and pay full price for a med my insurance wouldn't cover. But now that I'm on disability, I have to pretty much go with the lowest co-pay most of the time so I can afford them all.

It's enough to make a person decide to go off medication altogether. Tempting, but in my case, not wise. I know of some supplements that help, but I can't afford them anymore.

Crap! The pharmacy could have been right! 

I'm finding conflicting info on whether natural thyroid hormone meds are simply on back-order or have in fact been banned by the FDA altogether. Here's a decent summary....

Is the FDA Planning to Get Rid of Dessicated Thyroid Drugs Like Armour and Nature-Throid?

Unbelievable that a med that has been pretty much safely used for over a century is suddenly not considered a "proven" treatment? I smell a massive rat here. If I find some sort of petition to protest this process, I will post it.

Medication shortage alert! 

Many people like me rely on naturally derived thyroid hormone replacement for their Hashimoto's or hypothyroidism. But now there is none to be had, and the shortage is expected to last at least three MONTHS!

Thyroid Patients: How To Survive the Shortage of Armour and Nature-Throid Natural Dessicated Thyroid Drugs

I don't know if there are any compounding pharmacies where I live. I am absolutely mortified at the idea of having to go back on synthetic thyroid meds because they do NOTHING for me. And the last thing I want is the return of the horrendous hypothyroid symptoms. It literally feels like I could DIE of exhaustion. No way do I need this now when I am trying to get feeling as good as possible for my upcoming vacation.

The pharmacy actually told me that Armour was being permanently discontinued. I put in a panicked call to my doc's assistant this afternoon. I hope the pharmacy was wrong and that I can get the natural stuff SOMEWHERE.

Wednesday, August 19, 2009

Quick note.... 

Ricky Buchanan's site, Bedbound Unlimited, has changed to Four Walls, No Limits. She's trying to include people who are more mobile but still housebound or mostly so.

Four Walls, No Limits

I have also changed this on my Links list. She has asked if I would like to contribute an article, and I probably will if I can get some of this brainfog on the back burner, heh heh.

Photographic self-indugence.... 

Decided to post here the Facebook pix that won't make it into my scrapbooks because they don't feature any family members. Trying to clean up my excessively cluttered desktop....

Robins 2008

flutterbyes 2008

Sioux Falls Zoo 2008

Natural History 2008

Also need to get my 2009 pix edited and either printed or posted so I can start deleting them from my digital camera. I need to make room because I'M GOING ON A CRUISE!

Yes, you read that right. Dan's parents are footing the bill; otherwise, it would be a financial impossibility for us. They wanted us all to take a family trip together.

We will be going on a four day Disney cruise with stops in the Bahamas and an island actually owned by Disney. It's not until November, but I am rapidly finding out that reservations for certain things have to be made NOW. And Dan is in the process of applying for a passport.

I am wayyyyy excited but also more than a little nervous. I just don't know if my health will permit much, and I'm almost guaranteed to get sicker afterward, but Dan's grandfather is going, and if a 92 year old man can go on a cruise, there has to be a way for me to do it too. And accommodating my various dietary restrictions is going to be a mighty challenge.

I also feel a little weird accepting such a generous gift from Dan's parents. But when am I gonna get another chance to go to the Caribbean, much less on any sort of vacation? It has been two years since I left South Dakota; I don't count my visits to the Mayo Clinic because they weren't for fun.

Still must limit my computer time due to the back injury, but hope to be back to what passes for normal for me around mid-September. Trying to squeeze in a few writing projects in between doing research for my trip and some other things. Have wanted to contribute to some other people's sites and/or e-books who have expressed an interest, but I'll reveal more about that when I figure out what on earth I'm gonna contribute, heh heh.

Ah, to spend some time at a beach again.....

Tuesday, August 18, 2009

DVD review alert! 

My friend Robert is now doing DVD reviews online. Here's the link to the site:

Topeka DVD Examiner

I should be doing some reviews of my own, but got all sidetracked and discouraged by these new health issues. Also, there's some GOOD stuff that's got me sidetracked, which I will post about at some point.

Not very eloquent tonight. Too brain-fogged.

Thursday, August 13, 2009

From the Quran, 17.33 

The ultimate weakness of violence is that it is a descending spiral, begetting the very thing it seeks to destroy. Instead of diminishing evil, it multiplies it. Through violence you may murder the liar, but you cannot murder the lie, nor establish truth. Through violence you murder the hater, but you do not murder hate. In fact, violence merely increases hate. Returning violence for violence multiplies violence, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.

Wednesday, August 12, 2009

Adrenals and the connection to celiac disease..... 

As with many autoimmune diseases, adrenal gland problems often crop up. Celiac disease is no exception, according to this article from Celiac.com's newsletter....

How Gluten Sensitivity Affects the "Stress" Gland

Unfortunately, the symptoms of adrenal fatigue so closely resemble hypothyroidism and several other ailments, it is often tricky to pinpoint. And naturally, if you're like me and have fibromyalgia on top of everything else, that usually conveniently gets the blame.

Tuesday, August 11, 2009

Gluten may be harmful to healthy people too! 

Research is showing immune responses to gluten even in people WITHOUT celiac disease. From Celiac.com.....

Non-celiacs Show Interleukin 15 Production when Challenged with Gliadin Peptides

I am beginning to believe that anyone with an autoimmune disease should go on a trial gluten free diet just to see if they feel any better. Sure couldn't hurt.

New blog to share.... 

My friend Dr. Karen has started a new blog that I think everyone, especially those with chronic illness, should check out. I'm adding it to my Links list too (yeah, I know, I need to go in and edit the list properly).

Dr. Karen's Psychological Hot Topics

To be honest, right now, I'm needing therapy myself. There are some good things going on in my life that I really should be focusing on, but I seem to be more mired in the pit that is my chronic illness. How do I get out of the pit and get excited about the good stuff?

Sunday, August 09, 2009

Need a dog kiss? 

Link to a virtual puppy I found in an old e-mail from Pete. Give simple doggy commands, like "kiss", and see what he does!

I Do Dog Tricks

Trying to clean out my inbox as I had completely lost track of doing so. I was shocked to find over 350 messages in there!

Thursday, August 06, 2009

Prayer of Joy 

One more from my church bulletin. For those times when some good cheer is in order.....

"God of joy, thank you for the gift of a good laugh.
Like music and love, it speaks all languages and has a healing power all its own.
Help us to remember there is nothing life-giving about being gloomy.
Let our belief in you and our trust in your care be so complete that our joy will be the sure sign of your presence in this world that needs you so much. Amen."

-- Pat Corrick Hinton

The non-wizarding equivalent of "rememberalls"... 

From the CFIDS newsletter and Facebook. I think some of these suggestions would help even those not plagued by brain fog.....

Memory Aid Tips

The pill minders are essential for me. I also have what I call a "fibromyalgia" purse, with lots of pockets for specific items so I can see right away if something is missing. And of course there are the massive piles of items right in front of me on the command center to remind me to do something with them, heh heh.

With chronic illness, the road to career success can be rocky indeed.... 

This is the story of a Japanese woman who, through a great deal of determination, managed to complete her education and begin a career despite illness. From the CFIDS newsletter.....

“Never give up!”

If a person with this ailment does not possess patience, they will be forced to learn it. This is the nature of facing a life-long challenge.

Wednesday, August 05, 2009

CFIDS affects all parts of the world.... 

This is the story of a Japanese woman, formerly healthy, and her struggle to find effective treatment. From the CFIDS newsletter....

Is This My Destiny?

One of the most frustrating things about this ailment is the inconsistent response to various therapies. Something that may turn one patient's life around and make them functional may actually make another worse.

How to not spend all your spoons in one place.... 

From the CFIDS newsletter. Believe it or not, rest breaks can make you MORE productive, not less....

Tips for Conserving Energy

I already employ many of these methods in my everyday life. If I didn't, I'd probably never get past getting out of bed.

Proof of post-exertional malaise? 

Got this link in the CFIDS newsletter. Apparently, there may be a way to document the severe post-exertional pain and exhaustion that patients experience.....

Blood Biomarkers for CFS: A Light at the End of the Tunnel

I have high hopes that there will be a way to properly document this phenomenon, because it infuriates me when supposedly reputable rheumatologists tell me that if I would just exercise harder, I would be cured. If I had a dollar for every time I suffered a flare from the tiniest bit of over-exertion, I would be a rich woman.

Just had to share.... 

Watched "Jules and Jim" last night. There was a quote (translated from French) that made me giggle uncontrollably.....

'As a little girl I learned:
"Our Father who art in heaven."
I thought it said, "who ARTS in heaven."
I imagined my father with an easel painting outside the pearly gates.'

Tuesday, August 04, 2009

Prayer for Rest 

Another prayer from my church bulletin. For anyone else needing respite from chronic illness or other types of weariness....

'You, who said, "Come unto me all ye who are weary and heavy-laden and I will give you rest," I come to you now. For I am weary indeed. Mentally and physically I am bone tired. I am all wound up, locked up tight with tension. I am too tired to eat. Too tired to think. Too tired to even sleep. I feel close to the point of exhaustion. Lord, let your healing love flow through me. I can feel it easing my tension. Thank you. I can feel my body relaxing. Thank you. I can feel my mind begin to go calm and quiet and composed. Thank you for unwinding me, Lord, for unlocking me. I am no longer tight and frozen with tiredness, but flowing freely, softly, gently into your healing rest.'

- Marjorie Holmes

Can't believe my ears..... 

Finally got in to see an ENT today and had my first hearing test in five years. The previous one had showed mild loss in the left ear complicated by tinnitus (the right ear is deaf from a childhood illness). I figured today's test wouldn't be that much different. But, no, it is noticeably and measurably worse, and I have progressed to moderate hearing loss on the left side that doesn't have much in the way of treatment. The ENT says the Sjogren's is causing it. No way to tell if it will continue to worsen or level off.

I guess the good news is that it took 12 years to get this bad, so if it does progress further, it might not become severe for another decade or two. But there is a chance, possibly small, that I could become completely deaf. As an ex-DJ, I would really be heartbroken if I couldn't listen to music anymore.

Between this and the recent discovery of the compressed disk in my back, I need a bit of time to grieve the addition of more permanent quality of life impediments. Yes, I do indulge in pity parties, brief ones, so I can get them out of the way and then go back to figuring out how to keep on keeping on. For the moment, though, I am discouraged as hell.

Feebly waving a white flag.

Fibromyalgia, Sjogren's, or both? 

There is a growing number of practitioners who suspect that patients initially diagnosed as having fibromyalgia may instead have Sjogren's syndrome. Here's a link I got from But You Don't Look Sick....

Fibromyalgia and Sjogren's syndrome

Of course, some people, like me, are lucky enough to hit the jackpot and have both ailments. If that doesn't complicate life, I don't know what does.

Monday, August 03, 2009

Prayer for Wellness.... 

This appeared in my church bulletin today. I thought I would share should anyone besides me be in need of it....

"God of oneness, wholeness, in hurt and pain I dream of a day when I no longer feel continual distress in my body. I cry out to you to hear me, to stretch your arms of compassion to me and to embrace me with your comfort. My being needs to be filled with your spiritual energy. I am weary with the struggle to feel well and to be in good health. It is so easy to slide into depression and self pity, to be impatient and despondent. God of the living, hear me. Fill my empty places with hope. Fill my life with a sense of joy in spite of this ceaseless pain. Help me to fight that giant oppressor of the spirit: discouragement. Remind me often of the good people of my life and of all the blessings that are mine as I struggle with this pain which is ever present to me. I praise and thank you for being a God who never leaves me. Amen."

-- Joyce Rupp

New way to research gluten free products.... 

Link courtesy of the Celiac.com newsletter. I did check out the site they mention....

Zeer Select - The Easy Way to Find Gluten Free Foods

I think the Zeer site is quite promising because it is updated regularly, AND if the food you want to use contains gluten, they suggest safe alternatives. I look forward to using it instead of relying on iffy search engines.

Possible connection between mouth lesions and gluten intolerance.... 

Got this in the Celiac.com newsletter. Never heard of this before, but find it very interesting....

Could that Canker Sore Mean Celiac Disease?

I still get the type of sores mentioned in the article, so I'm more inclined to think that they are connected with autoimmune diseaseas in general. When I had to lower my dose of immuno-suppressant in April, the canker sores in my mouth suddenly got worse. I've got a bunch right now as a matter of fact. Ewwwwww.

Saturday, August 01, 2009

Another BYDLS review, posted here for now.... 

Thought I'd post this before it gets too outdated. I submitted it to But You Don't Look Sick, but I don't think the webmistress is up to adding it at the moment....

Movie Review: "Harry Potter and the Half-Blood Prince"

Although I skipped the massive opening week showings, I did get in to see "Harry Potter and the Half-Blood Prince" the following weekend with two friends, one who had read the book and one who hadn't. All three of us had viewed the previous five films in the series. Some of the following information may be considered spoilers with those who have not already read the books.

This movie is based on the book of the same name, the sixth in the seven book series. But it begins in a setting that doesn't appear in the book: Harry sitting in a cafe, attempting to flirt with an attractive waitress. His efforts are thwarted when Albus Dumbledore, the headmaster of Harry's school for wizards, appears and recruits him to help convince a retired teacher, a man named Slughorn, to return as professor of the Potions class.

As with the previous film, because the book upon which it was based was so detailed and lengthy, the story was shortened enormously, characters were omitted, and some elements of the plot never explained. But the most important focus of the story, that of Harry and Professor Dumbledore's quest to find out what happened in Lord Voldemort's past that helped the evil wizard gain seeming immortality, is portrayed in a visually arresting fashion.

As with most of the other Harry Potter stories, our hero's arrival at the Hogwart's school for wizards for his sixth year is not a smooth one. This time, having seen his reviled classmate, Draco Malfoy, acting suspiciously in a shop that deals in dark magic related artifacts, Harry decides to spy on him on the train ride to school. But Malfoy find Harry out, paralyzes him with a spell, breaks his nose and hides him under his invisibility cloak.

Harry becomes convinced that Malfoy has become a Death Eater, a servant of Lord Voldemort, but no one believes a mere boy of 16 would be recruited for such evil work. Yet, Draco is paler and thinner than usual, and spends a great deal of time alone, brooding and looking like he might jump out of his own skin at the slightest provocation.The only time he really seems to perk up is during the first day of Potions class, where the students compete to win a vial of Felix Felicis, a substance that provides luck to whomever consumes it.

Harry, who is given a last minute schedule change to the same Potions class, arrives without the necessary textbook and grabs an old one from a cabinet. Inside the book, he finds handwritten notes all over the margins, most of which are improvements to standard potion instructions. The book has an inscription saying it is the property of someone called "The Half-Blood Prince". Harry tries some of the suggestions in the book and wins that day's contest and the vial of liquid luck which does come in handy later.

Harry's old textbook also has written in the margins the names of spells of which he has never heard. When Harry gets into a confrontation with Malfoy, he blurts out one of those spells, which has ghastly consequences. Professor Snape saves Malfoy from death, and Harry hides the book in the Room of Requirement, where, ironically, Malfoy had been lurking several times.

Because Harry and his friends Ron and Hermione are all 16 now, they and their classmates have become interested in dating. The girls begin scheming about sending love potions to the hapless boys of their fancy. Harry finds himself attracted to Ginny, Ron's younger sister, but because Ron disapproves of everyone Ginny dates, Harry keeps his thoughts to himself (although Hermione is perceptive enough to notice). Ron, who hasn't figured out that Hermione might be interested in a love relationship, allows a girl named Lavender Brown to fawn all over him. This complicated web is not unlike the typical high school situation, with one exception.

At one point, a girl Harry barely knows sends him chocolates laced with love potion. But Ron, who is always hungry, helps himself to about 20 chocolates before Harry finds him, utterly intoxicated and obsessed about meeting the new object of his desire. This hilarious scene takes a shocking twist when the antidote goes horribly wrong.

During various intervals during the school year, headmaster Dumbledore summons Harry to visit the past by means of a device called a Pensieve. It is a basin in which you deposit the memory of an event, and then you can visit that event as a silent observer. They are using it to see a young Tom Riddle, the boy who later became Lord Voldemort, what shaped him and how he became so very powerful. But one of the memories came from Professor Slughorn, who edited it to protect himself. To find out the truth, Harry must convince the professor to provide the true memory so that they can find a clue to defeating Voldemort somehow.

Fairly early on in the film, the Death Eaters who had managed to escape capture after their battle in the Ministry of Magic against Harry and his friends return for even greater mischief, inflicting harm on the general public. In a scene that does not appear in the book, they descend upon Ron's family home, and the results are fairly harrowing. And worse yet, Draco Malfoy is attempting to devise a way for the Death Eaters to break into Hogwart's.

When Harry finally gets the crucial bit of information he needs from the Potions professor, he and Dumbledore embark on a mission to obtain and destroy a magical object which holds a portion of Voldemort's soul. Though the location and its importance are never explained in the movie, the headmaster and his student go to a cave guarded by unsavory creatures and poisoned water. They retrieve the object and return to Hogwart's, where there is a confrontation that changes everything.

The teen romance scenes in "Half-Blood Prince" are amusing if a bit over-emphasized. Rupert Grint, who plays Ron, shows a real gift for comedy, and it was nice to see him get a bit more to say than in some of the previous films. Emma Watson, Hermione in the series, strikes just the right balance of exasperation and intelligence. And Daniel Radcliffe as Harry does an excellent job portraying the transition from youth to man, realizing that his destiny is unique and the the ultimate guidance will have to be his own.

As with the previous film, I wish more scenes from the book had been included. But even in this truncated version, it is a most worthy set up for the final two chapter in the Harry Potter saga. The last book in the series, "Harry Potter and the Deathly Hallows", will be released as two films, one to be released in 2010 and the other in 2011.

I am looking forward to seeing "Half-Blood Prince" again.

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