Tuesday, April 26, 2005

Rave of the Day for April 26: 

When I was a kid, if we were going to have dessert after dinner, my mom would ask us to keep our forks from dinner. By the time I was older, we'd always say, "Lick your fork!" so we'd have a 'clean' one for whatever goodie was to follow. So when I got the following in an e-mail, naturally it reminded me of my mom. Thanks to Joan for sending this one.....

Keep your fork!!

A Woman and a Fork

There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things "in order," she contacted her Pastor and had him come to her house to discuss certain aspects of her final wishes.

She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in.

Everything was in order and the Pastor was preparing to leave when the young woman suddenly remembered something very important to her.

"There's one more thing," she said excitedly.

"What's that?" came the Pastor's reply.

"This is very important," the young woman continued. "I want to be buried with a fork in my right hand."

The Pastor stood looking at the young woman, not knowing quite what to say.

That surprises you, doesn't it?" the young woman asked.

"Well, to be honest, I'm puzzled by the request," said the Pastor.

The young woman explained. "My grandmother once told me this story, and from that time on I have always tried to pass along its message to those I love and those who are in need of encouragement. In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was coming...like velvety chocolate cake or deep-dish apple pie. Something wonderful, and with substance!'

So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder "What's with the fork?" Then I want you to tell them: "Keep your fork; the best is yet to come."

The Pastor's eyes welled up with tears of joy as he hugged the young woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did. She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge. She KNEW that something better was coming.

At the funeral people were walking by the young woman's casket and they saw the cloak she was wearing and the fork placed in her right hand. Over and over, the Pastor heard the question, "What's with the fork?" And over and over he smiled.

During his message, the Pastor told the people of the conversation he had with the young woman shortly before she died He also told them about the fork and about what it symbolized to her. He told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.

He was right. So the next time you reach down for your fork let it remind you, ever so gently, that the best is yet to come.

Surfacing for a moment..... 

I haven't really been hiding, even though it may seem like it. Have been cleaning when I can because some friends are coming to visit on Thursday. Don't know how much more I'll get done, but at least I have a path cleared now.

Found a place that would rent me a wheelchair for the weekend (I'm going to a huge three day convention) at a decent price. It should fold pretty easily and fit into the trunk of our car. This should be an adventure because I've never ridden in a wheelchair outside of a hospital or surgery situation.

Wish I could say I've recovered from last week's root canal, but unfortunately, that hasn't happened. I got an infection last weekend and am on antibiotics, AND I have the TMJ reaction from Hades, honestly the worst I've ever had. And still have pain in the tooth....I thought that was supposed to go away after a root canal???

Had to do quite a bit of hunting to find a good doc to treat my periodic limb movement disorder after my previous doc ran out of ideas. Saw my ENT last week for a hearing checkup (still losing hearing on the left), and he suggested a neurologist he knew. Called for an appointment, and I can't get in until JULY 20, but they were nice enough to put me on a cancellation list.

So I'm ouchie and grouchy. I'm hoping the headache/TMJ/toothache lets up before our friends arrive so we can all enjoy the weekend.

Pain level: 9
Fatigue level: 8

Saturday, April 23, 2005

New niece!! 

Got the phone call from my dad just a little while ago. My stepbrother and his wife welcomed Allie Marie into the world at 8:20pm. She has all her little fingers and toes, and mom is doing just fine.


Friday, April 22, 2005

Headlines, day 2.... 

Chip, the world's most spoiled English springer spaniel, turns seven years old today. I guess that makes him a senior citizen.

No word yet on my soon-to-be born niece. My stepbrother stayed overnight in the hospital with his wife, and I don't think she's stable enough to go home, nor is the baby quite ready to be born.

I'm feeling a bit better regarding recovering from the root canal. I've got some penicillin in case I do develop an infection.

Found a wheelchair for rent for next weekend's convention. Should fit in the trunk of my small car when not in use.

Am compiling Hawaii photos to put in frames I had around the house. Will make prints at the camera store probably tomorrow.

Have de-cluttered the house pretty well, and plan to do some scrubbing between now and Thursday when our friends arrive. Dan plans to do some yardwork tomorrow as well.

Have fallen asleep on the couch every single night this week. It's a good thing I'm not doing this at work.

Pain level: 7
Fatigue level: 9

Thursday, April 21, 2005

Headline news.... 

My stepbrother's wife is expecting their first baby in May. Today, at a routine doc visit, they discovered her blood pressure was sky high. They admitted her to the hospital with preeclampsia.

We don't know yet if the baby is developed enough for the docs to safely induce labor. I guess they're looking into that right now. So my niece may be born very soon.

I am not well. The root canal I had yesterday was agony. Feels like I have daggers in my mouth even after I've taken my emergency pain med.

Can't stay online too long right now in case my dad needs to reach me. It's times like this when I really hate having dialup. Had to be offline all day yesterday due to storms, including FOUR hailstorms.

Will check in when I can.

Pain level: 9
Fatigue level: 9

Tuesday, April 19, 2005

Rave of the Day for April 19: 

Since I'm in a reflective mood tonight, I thought I'd share an inspirational story shared with me via e-mail. Thanks to bejo for this one.....

This was written by a Hospice of Metro Denver physician

I just had one of the most amazing experiences of my life, and wanted to share it with my family and dearest friends:

I was driving home from a meeting this evening about 5:00, stuck in traffic on Colorado Blvd., and the car started to choke and splutter and die -

I barely managed to coast, cursing, into a gas station, glad only that I would not be blocking traffic and would have a somewhat warm spot to wait for the tow truck. It wouldn't even turn over. Before I could make the call, I saw a woman walking out of the "quickie mart" building, and it looked like she slipped on some ice and fell into a gas pump, so I got out to see if she was okay. When I got there, it looked more like she had been overcome by sobs than that she had fallen; she was a young woman who looked really haggard with dark circles under her eyes. She dropped something as I helped her up, and I picked it up to give it to her. It was a nickel.

At that moment, everything came into focus for me: the crying woman, the ancient Suburban crammed full of stuff with three kids in the back (one in a car seat), and the gas pump reading $4.95. I asked her if she was okay and if she needed help, and she just kept saying, "I don't want my kids to see me crying," so we stood on the other side of the pump from her car. She said she was driving to California and that things were very hard for her right now.

So I asked, "And you were praying?" That made her back away from me a little but I assured her I was not a crazy person and said, "He heard you, and He sent me."

I took out my card and swiped it through the card reader on the pump so she could fill up her car completely, and while it was fueling walked to the next door McDonald's and bought two big bags of food, some gift certificates for more, and a big cup of coffee. She gave the food to the kids in the car who attacked it like wolves, and we stood by the pump eating fries and talking a little. She told me her name, and that she lived in Kansas City.  Her boyfriend left two months ago and she had not been able to make ends meet. She knew she wouldn't have money to pay rent Jan 1, and finally in desperation had finally called her parents, with whom she had not spoken in about five years. They lived in California and said she could come live with them and try to get on her feet there. So she packed up everything she owned in the car. She told the kids they were going to California for Christmas, but not that they were going to live there.

I gave her my gloves, a little hug and said a quick prayer with her for safety on the road. As I was walking  over to my car, she said, "So, are you like an angel or something?"  This definitely made me cry. I said, "Sweetie, at this time of year angels are really busy, so sometimes God uses regular people." It was so incredible to be a part of someone else's miracle. And of course, you guessed it, when I got in my car it started right away and got me home with no problem. I'll put it in the shop tomorrow to check, but I suspect the mechanic won't find anything wrong.

Sometimes the angels fly close enough to you that you can hear the flutter of their wings...

Psalms 55:22 "Cast thy burden upon the Lord, and He shall sustain thee. He shall never suffer the  righteous to be moved."

Anniversaries and other tidbits..... 

Well, the in-laws have cancelled their visit later this week due to illness. Bummer that they're sick, but I am a bit relieved not to have two sets of company in one week. It also gives me a bit longer to tidy up the house.

Got an astounding SEVEN phone calls this morning between 8am and 11am. All were medical in nature. Needless to say, I got no stinkin' sleep! And it made me run late for the chronic illness support group which was at 11:30. Didn't help that on the way there, some part of my brain thought I was going to aquacise, so I got on the highway when I hadn't intended to. Sigh.

The support group went well. There were only four of us there, but everyone knows I never have a shortage of things to talk about. I was just about to leave when for some inexplicable reason, I decided to pick up the parrot belonging to the lady whose house we meet in. The bird did not care for that and bit my index finger. It was more surprising and embarrassing than anything else.

The weather is finally warming up consistently enough for me to get around a little easier during the day. I'm going to be stopping the Bextra in a few days and starting the new med that's supposed to replace it, so I don't know if movement will improve or worsen. I still wear out incredibly fast no matter what, though, so I still need to track down a wheelchair for the StarFest. I've got some ideas as to where to look.

Tomorrow afternoon I get that root canal. Icky poo yuck.

One of the calls I got this morning was from the rheumatologist's office. I'd left a message yesterday afternoon asking if he knew any sleep specialists where I could get a reliable second opinion about treatment for the periodic limb movement disorder. He didn't know of anyone. Guess I'll just pick someone and hope they're good.

Today was the 10th anniversary of the Oklahoma City bombing. I remember how right after it happened, a lot of people around me were blaming Arabs, jumping to conclusions even though they hadn't seen the story on the news yet. Were they ever suprised when the culprit turned out to be an ordinary-looking white American-born man. And now we're back to being suspicious of anyone with a name or face that appears to be of Middle Eastern descent. I guess we're full circle now, and it makes me ashamed of my fellow Americans' behavior. Perhaps it is different in Oklahoma City. I visited the site of the bombing in 1997, and at that time, while I was sickened by what had happened, I was heartened by the outpouring of love shown by visitors from all around the world.

And tomorrow is the anniversary of another tragic event. A lot less media coverage now of course, but I always wonder about the ones who lost family members and those still carrying the scars or in some cases the actual bullets in their bodies. Do they still hurt emotionally? Does spring bring mixed feelings for them? Are they hoping this is the year the reporters leave them alone? Or are they facing their futures with confidence and more compassion than those not personally affected by the shootings? I remember driving across town two days after the shootings, gravitating toward the park next to the school because I didn't know how else to grieve. I saw and contributed to the many memorials in the rain, hugging and praying with complete strangers because it seemed like the least I could do. And I have quotes from the memorials posted on my spiritual website, just to make sure I never forget.

Was surprised to see the new pope has already been picked. As a liberal Protestant, I was wistfully hoping that it would be someone younger and more progressive. But I know a great many Catholics will be more comfortable with the status quo. I do wonder if Catholicism will hold with tradition indefinitely? Perhaps if the shortage of priests becomes severe there will be a rethinking of women's roles. But then I'm just an outsider speculating.

Trying to think of a clever way to end this post, but nothing comes to mind.

Pain level: 6
Fatigue level: 8

Sunday, April 17, 2005

Rave of the Day for April 17: 

Time for a funny from Ducky's Daily Grin....

You Know You are From A small Town When ...
1. The local phone book has only one yellow page.

2. Third Street is on the edge of town.

3. The "road hog" in front of you on Main Street is a farmer's combine.

4. You leave your jacket on the back of the chair in the cafe, and when you go back the next day, it's still there, on the same chair.

5. You don't signal turns because everyone knows where you're going, anyway.

6. No social events can be scheduled when the school gym floor is being varnished.

7. You call a wrong number and they supply you with the correct one.

8. Everyone knows all the news before it's published; they just read the hometown paper to see whether the publisher got it right.

9. The McDonalds only has only one Golden Arch.

10. A "Night on the Town" takes only 11 minutes.

11. You have to name six surrounding towns to explain to people where you're from.

12. Headline news is who grew the biggest vegetable this year.

13. You can name everyone you graduated with.

14. School gets canceled for state sporting events.

15. Anyone you want can be found at either the Dairy Queen or the feed store.

16. Directions are given using "the" stop light as a reference.

17. It was cool to date someone from the neighboring town.

Whirlwind of activity.... 

Went to a baby shower yesterday. My stepbrother's wife is due in just a few weeks. She's expecting a girl. At least 40 people were there. She received an amazing amount of clothes.....her daughter's gonna be the best dressed baby I've ever seen. I got her a Snugli, one of those baby carriers that looks like a backpack that either men or women can use. After the party, we went up the street to my stepbrother's house to check out the baby's room. It's all ready for the new arrival, and very cute.

When I got home, Dan and I decided to drive to a neighboring town where Dan had applied for a job and check out the housing situation. The town looks like a very nice place to live, but there are no existing homes for sale to speak of. The new single family homes being built are nearly the same price as what we have now. Unless Dan is offered significantly more money than he's making now, we'll have to move to a less expensive place. But there are plenty of condos and townhomes because this is a college town. We took a peek at one of the condo developments being built. They are nice and a good price, but I think they would be a bit too small for us.....they are about one-third smaller than our house. If we decide to go up there again, I would take a look at something larger.

This afternoon, we are getting together for a belated birthday celebration for my dad. Last week was his birthday, but the blizzard forced us to delay our plans. I hope the restaurant we are going to will be able to accommodate my dietary restrictions.

I need to get some cleaning done as Dan's parents are coming to Colorado for a relgious conference next weekend. I've done some scrubbing on the downstairs reasonably recently, so it won't take too much to tidy it up again. But I really need to tackle the command center and the rest of the upstairs.

The weekend after that, we have some friends coming for the StarFest convention. It's a three day event for sci-fi, horror and other genre enthusiasts. William Shatner will be there on the third day....I look forward to meeting him. I will need to either borrow or rent a wheelchair, though, because there is no way I'm going to be able to do all the standing and walking required.

Right in the middle of StarFest there is a Sjogren's fundraiser I'd committed to several months ago. It's a one or two mile walk. If I do obtain a wheelchair for the StarFest, I'll use it at the charity walk too.

Looking at housing has made me realize that if I end up having to move suddenly for Dan's job, I'd better start cleaning out closets, cabinets and other cluttered areas now. There are fewer things I hate worse than moving absolutely everything because there was no time to de-clutter first. I know if I look under the kitchen and bathroom sinks I'll find stuff that hasn't been used in the seven years we've lived in our current residence. And do I really need a laundry basket full of ancient t-shirts that no longer fit? If we end up moving across the country, we'll have to sell furniture too. Yikes.

At least I won't be bored. Like I ever am anyway.

Pain level: 6
Fatigue level: 7

Friday, April 15, 2005

Rave of the Day for April 15: 

My April book review has been posted on But You Don't Look Sick. Here it is:

The New Sjogren's Syndrome Handbook

I am getting good feedback on my contributions. I even got a "fan" e-mail about my article on travel tips! Pretty cool.

Dis and dat..... 

Still getting headaches. The docs as usual can't find anything amiss, so it is probably the fibro or the Sjogren's acting up. I go through cycles of these every once in awhile, and have tried every possible med to no avail, so I know I just have to ride them out.

The rheumatologist has found an anti-inflammatory that I haven't tried yet since Bextra and Vioxx are no longer options for my arthritis. I'm going to try something called Lodine. It's an old medication and supposed to be relatively safe.

The vertigo spells of late are getting worse and more frequent. I'm thinking it may be related to the increase in tinnitus, so I'm going in for another hearing test next week to see if anything has changed. I'm noticing that more and more people seem to be mumbling around me.

Saw the sleep specialist today about the periodic limb movement disorder. She said she's out of ideas for treatment that I haven't already tried except potent medications like Klonopin, which she won't prescribe. She suggested I try the specialists at a local hospital for a second opinion.

So for now, I'm going off the Neurontin since it wasn't particularly helpful and back on the Ambien. Ambien doesn't help with the twitching but allows me to sleep through it. I'm probably going to call the rheumatologist tomorrow to see if he can recommend a particular sleep specialist at the hospital.

The more things change, the more they stay the same.

Pain level: 8
Fatigue level: 9

Tuesday, April 12, 2005

Blizzard pix and much more.... 

When I woke up yesterday morning, it had finally quit snowing, and I was surprised to see that it was already melting. Chip D. Dog helped me survey the damage, and I took some photos of the experience. Here's a link:

Blizzard 2005

Dan's flight was delayed more than two hours. I drove around the airport for 40 minutes before he showed ( for security reasons, they won't let you park and wait at the arrival area). He injured his back helping his parents move, so he stayed home from work last night to ice it and take some muscle relaxers.

With Dan's plane coming in so late, I only had time to get to one of my docs' offices to request that they fax medical records to the disability insurance company. It turned out to be just as well because in the mail was another letter from them. They extended my benefits, but only through the end of next week, and they want MORE evidence to prove I am still too sick to work. So this morning after I saw the dentist, I went to the ENT's office and dropped off a copy of the new letter.

The dentist said that I likely need a root canal, but filed down one of the new fillings (it's porcelain) just a bit so that my bite would be a little more natural. That helped some. Luckily, I don't have an active infection. I have an appointment for a week from tomorrow....if I'm still experiencing sensitivity in that tooth, they'll do the root canal with a crown to follow three weeks later. Yikes.

Here's something interesting....I was worried about my jaw muscles becoming sore from the dental appointment, so I took a Skelaxin (a non-sedating muscle relaxant) right after I woke up so that it would kick in before the appointment. I think the Neurontin I took before bed was still in effect at that time. I am pleased to report that my pain level dropped considerably, probably a combination of the meds, the warm sunny weather and the massage therapy I had at 11am. Nice to get a break. Of course, the Neurontin has worn off now, as has the Skelaxin, so the pain is creeping back in. Too bad I can't take Skelaxin more often (causes stomach upset if I take more than a few doses) because it really does help with the muscle pain and stiffness. But even a short time off from the pain is a good mood booster.

Dan found out that Hallmark Cards in Kansas City is hiring graphic artists. I'm encouraging him to apply and have promised to help him pick out 10 of his portfolio samples. He's not sure he has enough quality ones to send in as they want 10-15. But he sounds like a very good fit for the job description, so what would it hurt to apply?

So tempted to go back to bed. Getting up at 7am for an appointment throws off my whole day energy-wise. But I think I'll push through the sleepies and see if I can't get something done and prolong this good mood.

Pain level: 5
Fatigue level: 9

Monday, April 11, 2005

Rave of the Day for April 11: 

Haven't raved in quite awhile, so I think I'm overdue. Got this excellent article from the Fibrohugs newsletter (the site is on my list of Links on the upper right hand side of this blog). Wish the US judges would take a cue from this Canadian one.....

Honda ordered to pay $500,000 for firing disabled worker...

An Ontario court has sharply criticized Honda Canada Inc. for firing an employee with chronic fatigue syndrome, and has slapped the company with the stiffest penalty ever imposed in an employment case in Canada.

"Honda's misconduct was planned and deliberate and formed a protracted corporate conspiracy against" Kevin Keays, Mr. Justice John McIsaac of the Ontario Superior Court said in the recent ruling.

The judge called the company's conduct outrageous and said its actions "should make the blood boil of any right-thinking individual."

"All [Mr. Keays] was seeking from Honda was a reasonable accommodation for his disability, and, in the result, he was terminated," the judge ruled. "His condition was incompatible with the 'lean' and efficient operation demanded by Honda's corporate policy. The computer-managed workplace 'trumped' his human rights."

Judge McIsaac awarded Mr. Keays two years salary and $500,000 in punitive damages. "This is the highest damages ever in Canada in an employment law case," said Hugh Scher, a Toronto lawyer who represented Mr. Keays. He said punitive damages are rare in employment cases, and seldom top $25,000.

Honda spokesman Jim Miller said the decision will be appealed. He declined further comment.

Mr. Scher said the decision will have implications for other Canadians who suffer from chronic fatigue syndrome, or CFS. The illness should "not be given short shrift," he said.

Judge McIsaac said Mr. Keays was a victim of harassment and discrimination by Honda, and the company should have recognized his illness as a disability.

"Just because Mr. Keays did not carry a white cane, use a hearing aid, or get around in a wheelchair, did not make him any less deserving of workplace recognition of his debilitating condition," the judge said. "Despite his many years of affliction, he continually had to "earn" any accommodation reluctantly granted by Honda. This ignores the fundamental principle of human rights law that accommodation is a right, not an indulgence granted by one's employer or, worse yet, an act of charity."

Mr. Keays, 38, had worked at Honda for 14 years when the company fired him in March, 2000. He was among the first workers hired at Honda's assembly plant in Alliston, Ont., which opened in 1986. The judge said he was a model employee and team leader in the quality engineering department.

Within a few years of joining the company, Mr. Keays started having bouts of drowsiness, which forced him to miss work. He was diagnosed with chronic fatigue syndrome in 1996, and went on and off disability insurance for two years. The judge said those benefits were wrongfully terminated by the insurer in 1998, and Mr. Keays returned to the plant full time.

He began missing days of work again and fell asleep at his work station, the judge said. Mr. Keays tried to work out an accommodation with Honda but it "stone walled" his efforts and referred him to two doctors who suggested there was nothing wrong with him. He was fired in March, 2000.

"I have no difficulty in finding that the plaintiff has proved that Honda committed a litany of acts of discrimination and harassment in relation to his attempts to resolve his accommodation difficulties," the judge said.

Story origin:

Just when I thought it was safe to go back to chewing.... 

I got two huge fillings done a few weeks ago. Everything was going fine there for awhile.....I was able to eat normally again. At least I was until Thursday.

I was chewing on some carrots, and all of a sudden, one of the teeth I'd gotten filled started hurting again. And now it's sensitive to both hot and cold, which is something new. I'm hoping I just cracked it again, but I have a feeling it's worse than that.

I have an emergency appointment first thing in the morning, which is a good thing since it seems to be getting worse by the hour. The pain is starting to radiate. Why couldn't I have done this when I was working and making more money?

I've never had a root canal before, and I'm nervous that the dentist is going to tell me I need one. Sigh.

Pain level: 9
Fatigue level: 8

Not again! 

First Vioxx was pulled from the market last year because of heart-related side effects. Now the same fate has befallen Bextra. Next will probably the third drug in that class, Celebrex.

One thing that really annoys me about all of this are the glib reporters on the news that keep saying there are lots of alternatives to Bextra. Obviously none of the reporters have arthritis. Don't they think arthritis patients have already tried all the safer alternatives?

I went on Vioxx last year after I'd gone through eight less effective (or in most cases, completely ineffective) anti-inflammatories. I had no problems with it and was bummed when I had to give it up. I went on Bextra next.....not as effective, but still helpful enough to keep me mobile.

Now I've got to call the rheumy tomorrow and ask him what I should replace the Bextra with. I'm willing to go on Celebrex until it gets pulled since that drug class seems to help me the most. If not Celebrex, I think I'm up a creek because I've tried everything else.

I know they're trying to protect us. But look at what meds are given for autoimmune diseases, like prednisone or the anti-cancer drugs. Those are more dangerous than the cox-2 drugs, yet they are not pulled from the market because they know lives depend on them....all the cox-2 drugs give us is quality of life.

I too would settle for a black box warning. And I'm EXTREMELY tired of those Aleve commercials! All NSAIDS pose at least some health risks, yet it seems Aleve is trying to gloss over that.

Ok, I think I'm done ranting now.

Sunday, April 10, 2005


Was supposed to go to a restaurant this afternoon to celebrate my dad's birthday, but we'll have to reschedule. There was a blizzard overnight! It's still snowing, and it's expected to continue until tomorrow morning.

The first I knew about it was when I got a call from church this morning telling me that all activities had been cancelled. I thought that was odd as it had never happened before in the seven years I've been a member. Then I took a peek outside, or tried to, anyway....couldn't see my own yard through the snow blowing at 40mph!

My poor pup couldn't get outside because the snow was higher than his dog door. I cleared a path, but after he went into the back yard, a drift toppled over and blocked the door again. I hope he doesn't stuck out there....that happened a few years ago.

I guess I should count myself lucky....my lights flickered a few times, but so far, I still have power. About 10,000 of my neighbors don't. I just have a house that smells like wet dog.

My biggest concern is whether my husband will be able to get back here tomorrow afternoon from South Dakota. All flights here were cancelled today, and there may be a big backlog tomorrow. Also, I don't know if I'll have trouble getting out of the driveway to go pick him up.....there's about 16 inches of snow on the ground, a small car and no strength to shovel.

Wish I could have some hot chockie. Guess I'll go heat up some gluten free waffles and put some blackberry fruit spread on them.

Pain level: 8
Fatigue level: 8

Friday, April 08, 2005

Unexpected help..... 

Had a doc appointment today. Had to drive myself because Dan's in South Dakota helping his parents move. Didn't think it would be any big deal.

Got to the office on time, but all the parking spots were taken, including handicapped. So I went to the lot for the next building over....same story. And the lot for the next building after that.

There aren't any more lots within walking distance, so I drove around the largest lot a few times. Finally, a space opened up in the far corner of the lot. This had me about three blocks from the doc's office, and late to boot!

I began walking as fast as I could, which is about one-forth the speed of a healthy person. A guy on oxygen passed me! Before I'd even gotten out of the lot, I was running out of steam fast.

Then a man heading back to his vehicle asked if he could give me a ride. He was going to pick up his wife at the hospital, which is one building past the one I was headed to. Ignoring my usual rule about not riding with strangers because this guy seemed really genuine, I accepted.

I got dropped off at the front door so I could use what little energy I had left getting to the third floor office. I thanked the man several times for his generosity. I guess sometimes I'm really, really lucky.

Pain level: 7
Fatigue level: 9

Ok, sol's got me all revved up... 

....and with good reason. Check her journal entry for today; you can go there from my "Links" list.

And for those of you who didn't go there just now and read it, she did a magnificent rant about how her employer, a company who prides itself on its sensitivity, is bombarding her with e-mails about Weight Watcher meetings, "helpful" weight loss tips such as taking the stairs (like me, she is too ill to do this) and other unwelcome information. And this same said company provides donuts at United Way pitch meetings. Boy, does this sound familiar.

I didn't require a whole lot to get me wound up, to be honest. I've been ranting for awhile about this and other recent indignities committed in the name of what's supposed to be good for me.

I work with 1200 others, so the company I work for is plenty large enough for the United Way arm-twisting and the overly enthusiastic promotion of the Weight Watchers meetings. One of my co-workers wears a mock prison uniform to the United Way meetings with his employee ID number on the front of his shirt.

So we're bombarded with "helpful" weight loss info, and what is our reward for when our department does a good job? Pizza night! I can't even eat pizza. Or donuts or congratulatory cakes. And I can no longer take the stairs to lose those few extra pounds (as if it were that simple).

The only thing worse than the workplace hypocrisy is being a newly diagnosed diabetic who already leads a healthy lifestyle. The assumption is that because I have type 2 diabetes, I must be overweight and never exercise. So nearly every article I find on diabetes tells me how to lose weight and suggests that I work out an hour each day. Truth is, I'm only five pounds heavier than what I consider my ideal weight, and I do non-impact exercise up to six days a week already. Sigh.

And well-meaning people go out of their way to tell me how to cure what ails me. One woman told me a few weeks ago, with a straight face, that if I gave up red meat and tomatoes, my fibromyalgia would go away. I had a good laugh over that one.

Oh, and now my local pharmacy won't fill certain prescriptions for "moral" reasons! Never mind that I am prescribed the estrogen for a medical condition and not for birth control, or that whether or not I need pain meds is for my DOCTOR to decide. Why does EVERYONE ELSE know what's better for me than I do?? When did we cross the line from politically correct and become self-proclaimed lifestyle police??

I do NOT need someone to lecture me for parking in a handicapped space with my legally obtained handicapped placard in place. I do NOT need someone without a medical degree to decide for me that I would feel much better if I stopped taking all my meds. And if I were gay, atheist, another religion, whatever, it does NOT affect YOUR lifestyle, so DON'T try to convert me or pass a law barring me from marrying the "wrong" person!! Just because I'm in the minority, it doesn't necessarily make me wrong.

I'm an adult. I've earned the right to make a few mistakes, and even cultivate a few vices. Like this post, for example. When I want unsolicited advice, I'll go read someone else's blog.

Pain level: 6
Fatigue level: 9

Wednesday, April 06, 2005

The nightmare that is my life..... 

Last night, I dreamed that I was surrounded by demons. I knew all of these demons and had some connection to each of them...I think a few were family members? They didn't look that different from the average person except their skin was tinted slightly, maybe red or black. But even though some of them were smiling, each had an evil disposition.

The demons' job apparently was to torture me. I could not escape or make them stop, and this was something I just had to accept and endure. They used clamps, pliers, hammers, icepicks, knives. They shot jolts of electricity through me. And they laughed. The more I yelled, the funnier they thought I was.

I woke myself up screaming. I don't know why this dream had seemed so real, but it had, and I trembled for an hour afterward. I think part of the reason is that in the dream, the clamps and pliers were being used on my hands, and when I woke up, my hands had sharp pains in them in the exact same places. Normally, I wouldn't do something like this, but I woke Dan up and asked him to hug me.

I already know what the dream was about. It was an excellent metaphor for what my life has become. The demons and their instruments of torture were my various ailments, and I could not escape because I cannot escape from being sick no matter what I do. I am trapped and made to suffer every single day. No, this is not an exaggeration. It is how it really feels.

Welcome to my world.

Pain level: 7
Fatigue level: 7

No return, part 2.... 

First, I wanted to thank you all for your kind words and encouragement. This is a bumpy time in my life, but you make the road smoother. I am finding I am not as brave as I had thought.

Talked to the rheumy this afternoon. We agreed that the only feasible improvement I can hope for (barring a fibro, Sjogren's, and other ailment cure) at this time would be if I find a workable med for the periodic limb movement disorder. I need more time before I know if I've exhausted my options in that regard.

I have three more months of short-term leave available to me before I positively have to file with Social Security (my long-term disability insurance insists their recipients must file if there is not a specific return to work date), so I have a tentative return to work date of the first week of July. The odds of me actually going back to work are small, but I'll take one last shot at a miracle. If I have not improved by July, I'll go on long-term disability and file with Social Security.

I won't wait until July to start gathering paperwork, though, because I understand it can take months to get everything in order before actually applying with Social Security. Better to have everything together and never file than delay what is already a lengthy process. I have at least eight docs to get copies of my records from.

One upsetting monkey wrench about this whole thing is that I got ANOTHER denial of benefits from the disability insurance guys today. My rheumy provided all the paperwork they're requesting, and they claim it's not enough. So they've been sitting on my benefits for a month.

I'm going to call them tomorrow and make sure they got the functional capacity form that was sent to them. They gave me another one in the mail today. If they have it and are just disputing my doc's word, I'm getting in touch with the union president because I know I'm not the only one having trouble with the company.

I helped Dan apply for a government job last night. I figure the pay will be better than the average salary where I live. We'd have to move to the east coast, though.

I guess this is probably all dress rehearsal for dealing with Social Security in the future. Yuck. I think the whole thing is more political than health related.

Am already looking forward to when things calm down again.

Pain level: 8
Fatigue level: 8

Monday, April 04, 2005

No return to work.... 

I was all ready to go, had my lunch packed in the car, etc. But my rheumatologist would not authorize me to return. He believes I am not fit to go back to work.

I have an emergency appointment with him tomorrow to discuss whether I should file with Social Security. I'm pretty sure this is what's going to happen since he told me a year ago he thought I should go on disability. But I kept hoping I would get better.

He's right of course. I'm in no shape to work. But I've had no income in a month and was afraid my supervisor would lay me off so I wouldn't qualify for long-term disability (I have insurance).

I called my union rep to let him know the situation. I am going to call the union president tomorrow after my rheumatologist appointment to see what I need to do to keep my benefits. And then maybe I'll start contacting docs for medical records and download some Social Security documents.

I thought I would be relieved when this finally happened. But I've been in tears off and on since this afternoon. I was really counting on a few more months of full paychecks.

And this is really stressing Dan out. He won't be able to accept a job elsewhere in town for less pay unless we sell our house. We may have to move anyway....with only one wage earner, we'll have to go wherever he can make a good income.

I guess this is no one's idea of a good time. But I feel really unprepared. It's like being pushed into a swimming pool in the winter....don't know if I'll sink, swim, or crack my head on the ice.

Pain level: 8
Fatigue level: 8

Saturday, April 02, 2005


I'd like to express my sadness at the passing of Pope John Paul II.

No, I'm not Catholic. But I want to pass along my condolences to the 1 billion people who are.

I did not agree with most of the Pope's conservative views. In fact, I'm about as liberal as you can get and still be considered religious. But I did admire his resilience and had no trouble seeing what an influence he was.

And since most religions agree on the importance of peace, I considered him to be a man of peace. I was pleased to see on the news on Friday that prayers for the Pope were going on in mosques and synagogues. This is as it should be. No doubt when I go to my protestant church tomorrow evening, there will be prayers on his behalf as well.

The pontiff visited my city in 1993 along with President Clinton. I watched some of this on tv in amazement....two influential leaders known around the world having a discussion at a school where I used to compete in speech tournaments. The Pope made an appearance at a downtown cathedral. And he spoke to tens of thousands of teenagers who gathered to see him in a local stadium. At that time, I worked for one of the news radio stations. I got to talk with foreign journalists who had been invited to use our studios to do production. I remember in particular a conversation with a nice British lady who stayed late that night in the studio, and the look of reverence she got on her face when she talked about the Pope's "stature" (influence) worldwide.

But the most amazing thing to me was when 250,000 teenagers from around the world gathered in a state park three blocks from my house. They were all there for World Youth Day, and the Pope presided over that. I remember looking out my kitchen window toward the park at 4am, and the sky was glowing. All those thousands of candles and flashlights in the hands of all the kids made the sky glow. It was one of the most beautiful things I have ever seen, the multitudes gathered in the name of peace.

And so I will miss Pope John Paul II, even though I never met him in person.

I am interested in the future of Catholicism. I grew up with many Catholic neighbors, and I am curious in what direction their religion will take them. I wonder if the next Pope will be more modern in his views?

I think I will light a candle, in remembrance of the Pope and that amazing glowing sky.

Super slo mo..... 

Last night before bed, I tried the 900mg dose of Neurontin for my periodic limb movement disorder. Didn't take my Ambien in case the other med made me sleepy. Actually was sleeping ok today until the phone rang.

When I woke up, I felt horrible. Had a headache, nausea and felt like I was trying to think through cotton (more than usual). And I was still twitching.

Was supposed to go with my hubby to the grocery store, but I couldn't even get out of bed. I sat up long enough to write a grocery list and then had to lay down again. So Dan went without me.

The headache and nausea gradually lessened over the next three hours or so. I still felt like I was moving at one-quarter my already slow speed, though. Had to skip my workout because I felt too unsteady.

Finally decided to get a baby shower gift for my stepbrother's wife. Dan went with me, which was good because I wasn't up to driving. I already knew what I was going to buy before I walked in the store.

I considered using one of those motorized carts in the store, but no one seemed terribly interested in helping me figure out how to use it. I made it to the baby stuff under my own power, but I had to lean on Dan going to check out. Had to go straight home after that because I was already wiped out for the day.

The lower doses of Neurontin didn't make me feel sick like this. I'll try it again tonight, but I'm getting pretty fed up with meds that don't agree with me. I still have a week and a half before I see the sleep specialist and discuss other possible treatments.

Wish I could have some chocolate.

Pain level: 7
Fatigue level: 8

Skip this if you're easily offended..... 

Soap box time.

I know the Schiavo case has gotten way too much media coverage. But I'm gonna throw in my two cents anyway, and risk
offending my readers still further by including a vicious but thought-provoking vignette I received in an e-mail tonight.

My grandmother died a month ago in a hospice without a feeding tube. I do not honestly know for a fact my grandmother's wishes, but my aunts were ok with not artificially prolonging her life, and thus, so was I. I was secretly relieved that no one voiced any objections. My mom had a DNR posted in the house when hospice was caring for her prior to her death eight years ago. I did know that's exactly what my mom wanted, but I feared an argument from her sister who has strong religious beliefs. Thankfully, Mom's wishes were granted without protest.

The person I feel the sorriest for in the Terri Schiavo case is Ms. Schiavo herself. She lived for 15 years unable to communicate her wishes. She is at last at peace, and I fervently hope her family will be able to honor her memory by mending the rift that went on for so many years. I saw her brother and sister making the first steps in this, and I hope more are to follow.

While I strongly urge all adults to issue advance directives regardless of religious belief, poiitcs or health status, I am ashamed to admit that I have not done this myself. I have meant to, and in fact have the necessary paperwork buried in a tower of stuff on my desk right now. I've had this on my "to do" list since I was in college and wrote a lengthy article on the subject.

Dan and I have discussed this many times, and we are both in agreement that, for us, artificially prolonging our lives should we fall into a persistent vegatative state would be a fate worse than death. But we both have conservative parents who could possibly argue to preserve our lives no matter what. The wisest solution would be to fill out that paperwork so that we could be spared from a horrific situation like Ms. Schiavo's. So I gotta stop procrastinating.

What follows is the text of the e-mail I received. Is it in bad taste? Yes, it certainly is, but I feel it puts things in perspective better than I can:

With everything that's happening in the news, I thought I should get this written down in case anything should happen.

* In the event I lapse into a persistent vegetative state, I want medical authorities to resort to extraordinary means to prolong my hellish semiexistence. Fifteen years wouldn't be long enough for me.

* I want my husband and my parents to compound their misery by engaging in a bitter and protracted feud that depletes their emotions and their bank accounts.

* I want my husband to ruin the rest of his life by maintaining an interminable vigil at my bedside. I'd be really jealous if he waited less than a decade to start dating again or otherwise rebuilding a semblance of a normal life.

* I want my case to be turned into a circus by losers and crackpots from around the country who hope to bring meaning to their empty lives by investing the same transient emotion in me that they once reserved for Laci Peterson, Chandra Levy and that little girl who got stuck in a well.

* I want those crackpots to spread vicious lies about my husband.

* I want to be placed in a hospice where protesters can gather to bring further grief and disruption to the lives of dozens of dying patients and families whose stories are sadder than my own.

* I want the people who attach themselves to my case because of their deep devotion to the sanctity of life to make death threats against any judges, elected officials or health care professionals who disagree with them.

* I want total strangers - oily politicians, maudlin news anchors, ersatz friars and all other hangers-on - to start calling me "Terri," as if they had known me since childhood.

* I'm not insisting on this as part of my directive, but it would be nice if Congress passed a "Terri’s Law" that applied only to me and ignored the medical needs of tens of millions of other Americans without adequate health coverage.

* Even if the "Terri’s Law" idea doesn't work out, I want Congress - especially all those self-described conservatives who claim to believe in "less government and more freedom" - to trample on the decisions of doctors, judges and other experts who actually know something about my case. And I want members of Congress to launch into an extended debate that gives them another excuse to avoid pesky issues such as national security and the economy.

* In particular, I want House Majority Leader Tom DeLay to use my case as an opportunity to divert the country's attention from the mounting political and legal troubles stemming from his slimy misbehavior.

* And I want Senate Majority Leader Bill Frist to make a mockery of his Harvard medical degree by misrepresenting the details of my case in ways that might give a boost to his 2008 presidential campaign.

* I want Frist and the rest of the world to judge my medical condition on the basis of a snippet of dated and demeaning videotape that should have remained private.

* Because I think I would retain my sense of humor even in a persistent vegetative state, I'd want President Bush - the same guy who publicly mocked Karla Faye Tucker when signing off on her death warrant as governor of Texas - to claim he was intervening in my case because it is always best "to err on the side of life."

* And because Gov. Jeb Bush is the smartest and most righteous human being on the face of the Earth, I want any and all of the aforementioned directives to be disregarded if the governor happens to disagree with them. If he says he knows what's best for me, I won't be in a positon to argue.

Friday, April 01, 2005

Rave of the Day for April 1st: 

This one has made the rounds a few times, but I can't remember if I've posted it here before. Thanks to bejo for this latest version....

Signs of Times

• You just tried to enter your password on the microwave.

• You have a list of 15 phone numbers to reach your family of three.

• You call your son's beeper to let him know it's time to eat. He e-mails you back from his bedroom, "What's for dinner?"

• Your daughter sells Girl Scout Cookies via her web site.

• You chat several times a day with a stranger from South Africa, but you haven't spoken with your next-door neighbour yet this year.

• Your Grandmother asks you to send her a JPEG file of your newborn so she can create a screen saver.

• You pull up in your own driveway and use your cell phone to see if anyone is home.

• Every commercial on television has a website address at the bottom of the screen.

• You buy a computer and six months later it is out of date and now sells for half the price you paid.

• Leaving the house without your cell phone, which you didn't have five years ago, is cause for panic.

• Using real money, instead of credit or debit cards, to make a purchase would be a hassle and take planning.

• Cleaning up the dining room means getting the fast food bags out of the back seat of your car.

• Your reason for not staying in touch with family is that they do not have e-mail addresses.

• Your dining room table is now your flat filing cabinet.

• Your idea of being organized is multiple-colored Post-It notes.

• You hear most of your jokes via e-mail instead of in person.

• You get an extra phone line so you can get phone calls.

• You disconnect from the Internet and get this awful feeling as if you just pulled the plug on a loved one.

• You get up in morning and go online before getting your coffee.

• You wake up at 5am to go to the bathroom, and check your e-mail on your way back to bed.

• You start tilting your head sideways to smile.

• You're reading this.

• Even worse; you're going to forward it to someone!

Scattered thoughts.... 

I don't feel at all ready to go back to work on Monday, but my boss is trying to eliminate my position, so I should at least make an appearance. If I get laid off before this summer, I'll lose my long-term disability insurance and a disability pension. If people ask me if I'm feeling better, I'll just smile indulgently at them and say nothing.

FINALLY talked to the sleep specialist on the phone this afternoon. I'm still going to see her on the 14th, but in the meantime, I'm raising the dose of Neurontin to 900mg. I don't have much confidence that this will make any difference, but I'll give it a shot.

Guess who's allergic to Mederma, the OTC treatment for scars? Luckily, I only bought the small tube because this stuff's EXPENSIVE. I bought it for the huge scar on my neck from the lymph node biopsy. I started using it on Monday; my neck started itching on Tuesday, but I didn't think much about it at the time because I have frequent itching all over the place anyway. Then on Wednesday, not only did the scar itch, it turned bright red, and I figured out what the problem was and stopped using the Mederma. Yesterday, the itching got just about unbearable; I kept putting Benedryl cream on it to no avail. But today it is better. Whew!

Am having a friend over to watch a movie tonight on my last weeknight of "freedom". We're gonna watch "Willie Wonka and the Chocolate Factory", which I pretty much have memorized. I'm looking forward to the Tim Burton version starring Johnny Depp (what a hottie!) which comes out this summer.

Went to sleep last night with a moist heat pack on my hip, and it finally feels better. Amazing what little it takes to get dinged up, isn't it?

Tested my glucose level before and after a workout today. It only dropped seven points, so I think I'm ok. Didn't have any major dizzies today.

I think spring may be here already. There was a robin outside the bedroom window today. Hopefully it's not just a confused robin because it's not unusual to get snow here in April.

That's pretty much what's new in my little corner of the world.

Pain level: 6
Fatigue level: 7

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