Monday, February 28, 2005

Unusually ouchie.... 

Woke up Saturday morning with back spasms, and they simply won't go away. It's the lower back, on the right, and when it really gets going, the sciatic nerve sends pain all the way down my leg. I get this from time to time....nothing ever shows up on x-ray, so I believe it's just a trigger point problem.

I've also had migraines for a month now, sometimes on a daily basis. I go through this periodically, but it's a bummer that the back spasms are going on at the same time. I'm not eating like I should due to the nausea.

I think I'll make an appointment with the massage therapist and the chiropractor (they share an office). I'm getting tired of not being able to use the computer when my headaches are bad. Other than that, I don't know what else I can do other than what I'm already doing at home (muscle relaxants and stretches for the back and rest in a darkened room for the head).

I will probably go visit my grandmother at the hospice again later this week unless I get a call saying it's urgent I get there sooner. Right now the back spasms are so bad that it's difficult for me to lean over to hold her hand. But if she gets worse, I'll go right away even if I have to have assistance in walking.

Chip's going to the vet tomorrow. He's got something imbedded in his paw making it bleed, but we haven't been able to find anything causing it. There are a lot of burrs out where we live, so he may have one caught somewhere under all that fur.

Went back to aquacise for the first time in three weeks. It was difficult because of my back, but I know I needed to do it. Now if I can just stop oversleeping and missing classes....

Pain level: 9
Fatigue level: 7

Saturday, February 26, 2005

Visited Grandma.... 

Dan went with me and my dad, my sister and her fiance. The hospice is part of the same group that took care of my mom eight years ago. This is a newer branch...they placed her there because she has been living in nursing homes for a few years and has no "home" to go to.

The rooms there are a bit like hospital rooms except that they are painted blue with nice stenciled borders. Grandma's roommate has been there for awhile and has lots of personal items around her. There is a bird feeder outside the window that gets lots of use.

Grandma doesn't open her eyes very often....she seems somewhere between asleep and awake much of the time. When she does wake up, she is frightened because she doesn't know where she is due to the advanced Alzheimer's. She tries to cough but does not have the strength.

She is not on any medication, although they will administer pain medicine if they think she's hurting. She will not eat, but they will not force her to. The staff seems plentiful and attentive, so I'm ok with her being there.

She did try to speak to my dad, but he couldn't understand anything she said. Something interesting happened when I went to leave though. I told her I loved her and she very clearly said, "Yes."

She will have lots of visitors with four children, eight adult grandchildren and 10 great-grandchildren. So I know between all of us and the staff that someone will let me know if she gets any worse when I am not there. It's sad to be sure, but I am doing all right mentally.

Friday, February 25, 2005

Update on Grandma.... 

Talked to my aunt again today....Grandma now has pneumonia. Even so, she was released from the hospital this afternoon. That sounds like a weird thing to do, but the reason is that they don't expect her to recover.

They didn't return her to the nursing home. Instead, she has been placed in a hospice facility. I think she'll get better care there.

Basically, the prognosis is that she may only have a few weeks left. With the pneumonia, she may have even less than that. I will probably go visit her tomorrow.

I have a lot of confidence in hospice programs as they took care of my mom at her home when she died. They were awesome, telling us what we might expect, keeping her comfy, etc. They had a chaplain available for the patient and for family members whenever they needed to talk.

I've been praying for the best possible outcome on this. Even if the best thing is that she leaves us.

Of knaves and guttersnipes..... 

There was an entry in sol's journal that I wanted to address, because I wholeheartedly agree and wanted to add a reply. Rather than have you hunt for this gem, I have copied it here. Enjoy; my reply follows:

"The Snivelling Milksop's Guide to Insults.
Tuesday January 11, @11:16AM

Language has been much abused in recent years, most particularly by those who would like us to use less of it, and therefore cheerfully eliminate words from what is permitted in public speech.

Personally, I look upon this as a challenge, a cheerful reminder that our current crudity is merely a more direct means to what we've been alluding to for years in more oblique, and possibly even more insulting, terms. Though directness carries the implication that more words might be more difficulty for the addled and sorely worn brain of the recipient (though we cannot usually, alas, refer to that instrument as being over-used) there is a certain ring to the use of the well-played parry in today's world of semi-automatic insults.

I promise you, the day that you refer to someone of lesser vocabulary skills as a snivelling milksop, they'll rue the day that they had to refer to the unabridged just to find out they'd been insulted!

My mum once referred jokingly to co-workers as 'riff-raff,' and they went and looked it up and it caused an HR incident.
Calling someone a hirsute, gluttonous troglodyte won me a vocabulary merit badge among my family.

For those less lexicographically inclined, certainly there are crude phrases which may be forged, and among us dwell several masters of this art (i refer you to our dear friend, Mr. SamtheButcher, who truly put the F in FSoF) but i must confess, give me a good, sound Dickensian insult any day.

"You, there! Yes, you, you uncouth cabbage leaf, dweller of dank alleys! You snivelling cur! Fetch me my copy of the Oxford English Dictionary at once!

What? Too heavy? Use a wheelbarrow if you must, you witless, hapless child of the mud!"

C'mon, drag out your Dickens, let's hear whatcha got!

(for targets, may i suggest either the broken, unburnished lamps that are the FCC, or the hand-wringing, pallid monstrosities that are in charge of our Cable Conglomerates?)"

Let me just start by saying my favorite word is facetious. I learned it at the age of 5, and it has never ceased to hold a certain charm for me. It's even better than pulchritude.

This is what happens when your daddy goes to college and gets his degree in English while you are learning the language firsthand as a tot. And then you go on to get your own college degree in English. And start using words like fey and shouting "Hie thee hence!" to startled passersby.

The only thing about being ill that is worse than the fatigue is the loss of cognitive function. My vocabulary seems less than half of what it was eight years ago. I have descended into verbal ineptitude quite against my will.

I have not forgotten, however, that delicious word guttersnipe and how aptly it describes many modern divas.

The best string of insults in recent memory appeared in the song, "You're a Mean One, Mr. Grinch" sung by Thurl Ravenscroft. No profanity, no obscure meanings, but great stuff nevertheless. Because we all know that the Grinch stink, stank, stunk.

I do love Dickens. So many of us could identify with his descriptions of childhood poverty, no matter whether or not we ourselves were ever impoverished. And such a vivid portrait painted of Ebenezer Scrooge, indelible.

But for the penultimate insult of all time, I've got to go back to Shakespeare. I have to admit my fibrofogged brain couldn't locate it immediately because I had forgotten it was in "King Lear". But I found it, marked by brackets in my college textbook:
"A knave, a rascal, an eater of broken meats; a base, proud, shallow, beggarly, three-suited, hundred-pound, filthy worsted-stocking knave; a lily-liver'd, action-taking, whoreson, glass-gazing, superserviceable, finical rogue; one-trunk-inheriting slave; one that wouldst be a bawd in way of good service, and art nothing but the composition of a knave, beggar, coward, pandar, and the son and heir of a mungril bitch; one whom I will beat into clamorous whining, if thou deni'st the least syllable of thy addition."

Music to mine ears!

Hie thee hence!

Thursday, February 24, 2005

Lots going on..... 

I'm busy fighting with my employer's disability insurance company about my short-term leave. At the beginning of this month, my rheumatologist and I filled out seven pages of paperwork and put a tentative return to work date of March 14. Yesterday, I got a letter from the company saying they'd approved the first two weeks of February only and that I must prove I'm still too sick to work! Um, did they think I'd be miraculously cured of Sjogren's in two weeks?? So I went to my ENT that did my biopsy and asked him to send those medical records to prove I'm sick enough to require a lymph node be ripped out of my neck. And I'll go to my rheumatologist's office tomorrow and give them a copy of the letter. The company wants a detailed treatment plan, a return to work plan and a list of medical reasons why I can't work be sent to them. My next appointment with the rheumatologist isn't until May! Do you suppose rest and refraining from dealing with insurance companies would be an effective treatment plan?

Talked to my aunt on the phone. Apparently my grandmother started coughing up blood yesterday and was taken to the hospital. Grandma has stage 7 Alzheimer's, so hospital stays are always traumatic for her.

I couldn't go visit her tonight because Dan's at work with the car, but the hospital is probably going to discharge her tomorrow anyway. She has not been well for many years, but I don't think it's quite her time yet. I did ask my aunt to let me know if anything changes, though.

My biggest concern is that she not be in pain. She's not coherent anymore, so it's very hard to know when she hurts physically or is just upset. She's not eating well, and I think her body may be slowly breaking down.

May be getting together with three other members of But You Don't Look Sick who live in the same city I do. We may meet on a regular basis, sort of a mini support group. It's always cool to meet other people who know exactly what you deal with day to day.

Can't believe how wiped out I am. All I did today was get an allergy shot and drop off some paperwork at the ENT's. I still dozed off on the way home. Yeah, I'm fit to return to work all right. Sigh.

Pain level: 7
Fatigue level: 9

Wednesday, February 23, 2005

Good news! 

Got the call this morning....the biopsy sample doesn't have anything wrong that requires treatment. So NO MORE TESTS! I'd been having a continuous stream of them since November.

Now I can focus on stuff I've been putting off, like fixing my decaying teeth. I have a regular dental checkup on Friday. I have eight teeth that thanks to Sjogren's are falling apart around old fillings.

I'm at a loss as to what to do about this periodic limb movement disorder. I'd like to make some progress before next month so I can get rested and get back to work. Got ten hours of sleep last night and still am trying not to doze off right now.

Am doing the food diary prior to my visit with the diabetes nutritionist. Keep going back and forth about eating what I think I ought to eat and just eating what I like, stuff which is less healthy. I think I've caved in....I just finished a baked potato with butter (real, not hydrogenated) and shrimp with ketchup on it.

Never did get around to going to a psychologist like I promised the docs I would last October. I think I may wait and only see one if I decide to go on disability. I probably will need some counseling if I give up working.

One thing being off work has allowed me is time to assess the situation at hand. When I'm working, I'm always too exhausted to deal with anything other than figuring out how I'm gonna find the energy to work the next day. Now I feel like I have some clarity, or at least as much as a person can have in the midst of fibrofog.

Poor Dan is extremely stressed out about how we're going to get by if I stop working. He's concerned about getting laid off before he can find another job. And even more freaked out that he could get laid off while I'm on disability.

He can't believe I'm not worried. I told him I can't worry too much because it won't help me get any healthier, and that if he worries too much, he'll get sick too. I told him I'll do what I can to keep the house and that we'll be ok.

I'm off in pursuit of a shower and warm socks on my feet.

Pain level: 7
Fatigue level: 9

For the dragon...... 

I've needed to do a creative entry for such a long time. Haven't written about anything but illness since I finished describing my trip to Hawaii. But to be honest, that's all I've had the energy for.

I used to read sol's slashdot journal regularly. But as I got sicker, I had to spend less and less time on the computer to save up enough energy just to work. And so I read about the dragon less and less, and I until about a week or so ago, I hadn't visited the site since Thanksgiving.

And it's right here under my "Links".

Ok, everyone stop right now and go visit "The Journal of solemndragon". I'll wait.

People that know me well know that I'm sort of like osmosis. I hang around someone with an accent, and I start to talk like them. I mirror other people's attitudes. And when I read something by someone particularly talented, you can bet I'll pick up their writing style, whether consciously or unconsciously.

Well, I just read two MONTHS worth of sol's entries, so I might was well make this a conscious effort. Even if it exhausts me and makes my hands hurt from all the typing.

Except that this isn't really creative because I'll be answering various questions asked in the slashdot journal, and flatout copying the format of one of the entries.

sol, please forgive me. I don't know when my creativity slunk away and left me utterly without inspiration unless I steal it from someone else.

I'll start with  "What is your name? What is your quest?"

Name: the browser, who oohs and aaahs at the witty and the wise. I too am a bit of a dragon, and believe it or not, I was one before I ever heard of the teacup dragon named sol.
Age: I too am 12. No, really. Ask my husband. He'll verify I don't act a day over 12. In people years I prefer to say I'm agesless.
Current Location: One mile high.
Status: Fair. Suffering no doubt from a dearth of creativity, but somehow marginally functional.
Number of Sibling Units: One leech. Of course she'll kill me if she reads this.
Parental status: One father of the human sort, and one mother of the angelic sort.
Handedness: Two. Which explains why my hand/eye coordination sucks.
Pets: One empathetic canine who is as actively collecting ailments as I am.
Height/Weight: All very average.
Hair/Eye Color: Um, I don't know my real hair color. Some sort of brown with grey, probably. Right now it's faded violet brown. My eyes are the color of dark chocolate.
Hair Style: A clever blend of '70's-era feathering and shattered. I can either look like a rock star or a pixie, depending on my mood.
Scars/Tattoos/Piercings: Sadly, only scars. I'd have the other two if I weren't so doggone scared of needles.
Vision: 20/15. Oh, and of course I want world peace, which is surprising to no one.
Google-able? I think so. Haven't looked in at least a year. Besides my first name is just too doggone common.
Shoe size: Down to a 9, from an all-time high of 10. I know, that doesn't make them shoes, it makes them skis.
Average calorie intake: I can no longer do math. That's why I'm doing a food diary, so maybe the nutritionist can figure it out. My goal will be a diet that is gluten-free, gastroparesis-friendly and diabetic compatible. Does that leave me with anything?
Average tv time per week: Actually, it's at the highest amount since I was stuck on the couch after my foot surgery a year ago. I regularly watch "Millionaire", "Jeopardy", "Oprah" and "Extreme Makeover: Home Edition". How many hours is that? I said I couldn't do math.
Average COMPUTER time per week: At least 36 if I'm working. If I'm not, it had better be a whole lot less.
number of alarm clocks: one, and I try not to use it.
childhood nickname: Kerner. Although my sister called me Keh-wo.
childhood pet/stuffed animal/ imaginary friend: Had a stuffed dog named "Lady", which indicates I was raised on Disney. Had a real dog, also a cocker spaniel, named Freckles, which indicates I had an affinity for the obvious. I did not have an imaginary friend, preferring instead to imagine myself on "Gilligan's Island". I don't know what that indicates.

Next question: "What's your earliest memory"?

The ocean. I lived in Hampton, Virginia, and this was my first visit to the beach. I was a year and a half old. According to my mom, the ocean scared the shit out of me, and I screamed bloody murder. I just remember the water, not the feeling scared part.

"Anywhere but here, where would you rather be today?"

Kona. Hawaii. Or any point further north on the Kohala coast. Perfect 50 percent humidity, 80 degree daytime temps, incredible sunsets. And green sea turtles, which are the coolest critters on the planet second only to dolphins.

"What is your favorite chocolate?"

Dark. The darker, the better. Actually, this is a sore subject with me as I gave up chocolate because it contains caffeine, and caffeine is said to aggravate periodic limb movement disorder. But then I found out this week that white chocolate doesn't have caffeine. But I probably can't have that either, because of the diabetes. Am I allowed no food vices at all??

"Do you like being alone?"

Yes. I can be happy either way, which is strange coming from someone who works with their husband (when I'm not on disability, that is) and is often with him 24/7.

"What gets you out of the blue when you find yourself there?"

It used to be food. What a cruel trick my illness played on me. Now it's tunes, particularly metal because it's carthartic, and movies, particularly humorous ones because they are cathartic as well.

"What have you done lately that's brave?"

Type this entry, knowing if I'm online too long I could get another migraine.

That's all I can handle for now. Thanks, sol, for letting me pirate your journal, even if I didn't exactly ask permission.

Tuesday, February 22, 2005

Rave of the Day for February 22: 

Think some coporate humor would be appropriate. Thanks to Ducky for this giggle....

Everything I Need to Know
I Learned from Corporate America
• Indecision is the key to flexibility.

• The facts, although interesting, are irrelevant.

• Someone who thinks logically is a nice contrast to the real world.

• Everything should be made as simple as possible, but no simpler.

• I have seen the truth and it makes no sense.

• One seventh of your life is spent on Monday.

• Every time you make ends meet, they move the ends.

• There is always one more imbecile than you counted on.

• Never wrestle a pig. You both get dirty and the pig likes it.

• The trouble with life is, you're halfway through it before you realize it's a do-it-yourself thing.

Jobs and stuff.... 

Am on day 2 of a stubborn migraine. I have a feeling when I go back on my anti-inflammatories in a few days the headaches will become fewer. At least I hope so.

Helped Dan apply for a job today. Neither of us had applied online before. It was amazingly easy....just cut and paste the resume and cover letter into the application. This is a graphic arts job for a ski magazine....sounds like a good chance to be creative. Dan has been dragging his feet about applying because we only have one car and he doesn't know yet if I'm going to continue working. I told him to apply anyway and if he's offered something we'll figure out what to do then. There's another job for a company that makes gift cards, but I don't know if Dan's decided to apply or not.

There are some great jobs for advertising copy writers that I would love to apply for. If I were healthy, I would probably already be working somewhere else. My current employer has been laying people off for the past two years.

Haven't gotten to work on putting together the photos I want to frame yet....still waiting for the headache to let up because too much computer time equals nausea. Had to go to bed early last night....stayed in bed for 12 hours, but it didn't help much.

At least Chip is keeping me company.

Pain level: 8
Fatigue level: 6

Monday, February 21, 2005

Bonus Rave of the Day for February 21: 

Sometimes one good turn deserves another....

Washington Post - Part Two
The Washington Post's Style Invitational once again asked readers to take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and supply a new definition. Here are this year's winners:
1. Bozone (n.): The substance surrounding stupid people that stops bright ideas from penetrating. The bozone layer, unfortunately, shows little sign of breaking down in the near future.
2. Foreploy (v): Any misrepresentation about yourself for the purpose of getting laid.
3. Cashtration (n.): The act of buying a house, which renders the subject financially impotent for an indefinite period.
4. Giraffiti (n): Vandalism spray-painted very, very high.
5. Sarchasm (n): The gulf between the author of sarcastic wit and the person who doesn't get it.
6. Inoculatte (v): To take coffee intravenously when you are running late.
7. Hipatitis (n): Terminal coolness.
8. Osteopornosis (n): A degenerate disease. (This one got extra credit.)
9. Karmageddon (n): It's like, when everybody is sending off all these really bad vibes, right? And then, like, the Earth explodes and it's like, a serious bummer.
10. Decafalon (n.): The grueling event of getting through the day consuming only things that are good for you.
11. Glibido (v): All talk and no action.
12. Dopeler effect (n): The tendency of stupid ideas to seem smarter when they come at you rapidly.
13. Arachnoleptic fit (n.): The frantic dance performed just after you've accidentally walked through a spider web.
14. Beelzebug (n.): Satan in the form of a mosquito that gets into your bedroom at three in the morning and cannot be cast out.
15. Caterpallor (n.): The color you turn after finding half a grub in the fruit you're eating.
And the pick of the literature:
16. Ignoranus (n): A person who's both stupid and a putz.

Need to whiiiiine.... 

Woke up today to find my feet flapping wildly....the Neurontin I'm taking for periodic limb movement disorder is NOT helping after all. I've been on it for five weeks. I'm not supposed to see the sleep specialist for another month.

Could not get out of bed on my own. Dan had to help me. Felt like a maniacal steamroller had squashed me flat.

Thank goodness I didn't have to go anywhere today. I've just sort of been crawling through my day. If I were moving any slower, I'd be going backwards.

Ok, that's the extent of my gripes today. Haven't the energy to say much more.

Pain level: 7
Fatigue level: 9

Rave of the Day for February 21: 

These are soooo funny! Thanks to Ducky's Daily Grin for these giggles....

Once again, The Washington Post has published the winning submissions to its yearly contest, in which readers are asked to supply alternate meanings for common words. Also look for the original word and its meaning before looking at the new meaning. It will bring you some smiles! The winners are:
1. Coffee (n.), the person upon whom one coughs.
2. Flabbergasted (adj.), appalled over how much weight you have gained.
3. Abdicate (v.), to give up all hope of ever having a flat stomach.
4. Esplanade (v.), to attempt an explanation while drunk.
5. Willy-nilly (adj.), impotent.
6. Negligent (adj.), describes a condition in which you absentmindedly answer the door in your nightgown.
7. Lymph (v.), to walk with a lisp.
8. Gargoyle (n.), olive-flavored mouthwash.
9. Flatulence (n.) emergency vehicle that picks you up after you are run over by a steamroller.
10. Balderdash (n.), a rapidly receding hairline.
11. Testicle (n.), a humorous question on an exam.
12. Rectitude (n.), the formal, dignified bearing adopted by proctologists.
13. Pokemon (n), a Rastafarian proctologist.
14. Oyster (n.), a person who sprinkles his conversation with Yiddishisms.
15. Frisbeetarianism (n.), (back by popular demand): The belief that, when you die, your soul flies up onto the roof and gets stuck there.
16. Circumvent (n.), an opening in the front of boxer shorts worn by Jewish men.

Research and other stuff.... 

Been trying to decipher the pathologist report on my lymph node biopsy. Their official diagnosis, pending further tests in California, is "non-specific follicular and paracortical hyperplasia". Unfortunately, most searches on the internet are turning up very technical articles that I don't completely understand.

From what I can tell, the possibilities range from harmless to the potentially serious Castleman's Disease. So I may require no treatment at all or may need something as extensive as radiation, chemo and/or steroids. Now I can see why they wanted to look into this further.

Have started a food diary so when I see a nutritionist in a few weeks, they'll be able to tell me how I'm doing. I have no idea what I should or shouldn't be eating to treat diabetes. Most of the guides I've looked at suggest lots of salads and whole grains, neither of which I can tolerate, and say stay away from foods with a high glycemic index like rice and potatoes, both of which are staples of my diet because they are easy to digest.

I think maybe the Neurontin might be starting to help with the periodic limb movement disorder. I'm still twitching, but I think it's a little less than before? I'll give it some more time.

Went to the fibromyalgia support group meeting yesterday. Was going to mention to them that I'm now writing articles for But You Don't Look Sick, but the group facilitator beat me to the punch when she announced that she'd found this great story on the internet called the "Spoon Theory"! Great minds think alike, I guess.

I was seriously needing a break from cooking today, so Dan took me to Boston Market for lunch. That's a "home cooking" fast food place that has meals that are safe for me to eat. I had a quarter rotisserie chicken, garlic dill potatoes and steamed veggies.

Have been on a Stephen King kick lately. Started when I was looking for an old paperback to page through while waiting around at the hospital for my biopsy. Grabbed "Skeleton Crew", which I haven't read for several years. Finished it Thursday. Also, Dan and I watched the entire mini-series of "Kingdom Hospital" on DVD over several nights. I found it pretty entertaining, but wished it had ended a little differently.

Tonight, I watched a two-hour special on the first five years of "Saturday Night Live". Those were the best five years in my opinion. Love those old clips of Gilda Radner.....I sure miss her.

Bought some tunes last week with a gift card Dan gave me for Valentine's Day. Got Ozzy Osbourne's greatest hits and an CD by a band out of Kona, Hawaii called Pepper. Pepper has a song on the radio right now called "Ashes" that is pretty good. And of course I love Ozzy! "Crazy Train" is one of the best metal songs of all time! And this week I got to download "Save Me" by Unwritten Law on iTunes for free, which was pretty cool.

Guess maybe this week, I'll see about getting some of my Hawaii pictures into the frames I got for Christmas. And maybe tinker with my websites a bit? Stuff I've been meaning to do for months now.

But right now, the unbalanced checkbook is calling me.....

Pain level: 7
Fatigue level: 7

Friday, February 18, 2005

Rave of the Day for February 18: 

I'm in the mood for something funny. Since I had to do a whole bunch of driving around town yesterday, how about something on that topic? This comes from Ducky of course.....

Rules for Driving in Big Cities
When on a one way street, stay to the right to allow oncoming traffic to pass.
Never, ever, stop for a pedestrian unless he flings himself under the wheels of your car.
The first parking space you see will be the last parking space you see. Grab it.
Never get in the way of a car that needs extensive body work.
Always look both ways when running a red light.
Never use directional signals when changing lanes. They only warn other drivers to speed up and not let you in.
Making eye contact revokes your right of way.
Whenever possible, stop in the middle of a crosswalk to ensure inconveniencing as many pedestrians as possible. And if a pedestrian ahead of you steps into the road, speed up, honk or yell obscenities loudly and chase him back upon the curb. Pedestrians have no rights.

Going to California..... 

Didn't plan on being away for so long. My phone line croaked yesterday, which is a major hassle when you have dialup. Got it repaired just this afternoon.

So it is my lymph node going to California, not the rest of me. I have this mental image of my lymph node on a plane somewhere, wearing a tiny seat belt. Apparently there are tests they can do in Irvine that they can't do where I live.

The pathology report says I definitely do not have cancer, which is great. But I do not have healthy lymph nodes. They do not know exactly what is wrong, which is why they are sending the biopsy sample to California for more tests.

I am fortunate to have a very thorough ENT who uses the latest technology available. It's possible I won't get an answer even after the additional tests. But at least someone is trying to get to the bottom of this.

The odds are that whatever they find is not going to be something I can treat. The good part of this is that now I can just focus on the stuff I do have answers for and try to regain some health so I can return to work next month. Right now I am nowhere near healthy enough to work.

They did take the steri-strips off my neck yesterday...luckily, no skin came off with the adhesive, but they were concerned about how irritated it looked. Even though I had stitches that would absorb, they didn't want to risk further irritation and took the stitches out, which did hurt because the skin was kind of raw. They cleaned everything really well, which stung, and then they put paper tape on, which is something I know I can tolerate.

They said since I seem to be healing a bit slowly to go one more week without working out. I thought this was crazy until I turned my head to change lanes while driving last night and had a thunderbolt of pain shoot from my jaw to my collar bone! And then it went numb for a few hours last night.....I think I'll have Dan drive me for another week.

So now my main goals will be to develop a diabetes treatment plan and try to get this periodic limb movement under control. I made an appointment with a nutritionist, but it's not until March 4, so I think I will keep a diary of what I eat until then to give me a head start. I also have raised my dose of Neurontin per the sleep specialist's instruction....so far, it doesn't seem to help at all with the nightly muscle spasms.

Sooooo tired after yesterday. But I don't expect I'll have to do any more tests for a very long time once they finish up studying the biopsy sample. Hope my lymph node likes California.

Pain level: 7
Fatigue: 9

Wednesday, February 16, 2005

Rave of the Day for February 16: 

Oprah had Christopher Reeve's wife, Dana, on her show today to talk about her husband and his legacy. One of the things she mentioned was that he always wanted to do something to help others. Right after his accident, he had no idea that he'd be able to do this.

I read one of his books a few years ago and was amazed at the research going on to find ways to reverse paralysis. A foundation was begun in his name to apply the latest technology to help those with spinal injury walk again. Christopher's own public appearances also motivated people in wheelchairs to not give up, to have as fulfilling a life as possble.

The most inspiring part of the show, though, featured a girl who was paralyzed in a swimming accident. She was given a one percent chance of ever walking again, but she received help through Christopher Reeve's foundation. Today she walked across the stage with only crutches for assistance.

This made me really start thinking. I want to do more to help others in my own way. I haven't the funds to start a foundation, but I bet there are other things I can do.

Biopsy results Thursday.... 

Going to the ENT tomorrow for my follow-up. He'll take these awful steri-strips off my neck and tell me what the pathologists had to say about the tests they ran on my lymph node. Did I mention the ENT removed nearly an entire lymph node? I've got a scar on my neck about two and a half inches across.

There are basically three possibilities. The least likely (only about 10 percent) is that I have non-Hodgkins lymphoma. The most likely is that I have inflammation of the lymph nodes caused by Sjogren's It is also possible that I could have cells that aren't cancerous yet aren't normal either.

I'm going to a Sjogren's support group meeting tomorrow night, so I might not get back here until Friday. But I will report back on what was said at some point.

Tuesday, February 15, 2005

Mellow yellow.... 

Better today. Still itchy, but haven't needed any pain meds for the biopsy incision.

I've spent more time on the couch in the past four days than probably the past four months. I'm pleased to report that the edema in my feet is for the most part gone because I've been elevating them so much. I'd forgotten that feet aren't supposed to look like alabaster sausages.

Extremely sore joints and muscles, though, from inactivity. Did some stretches for my legs and hips today, which helped a little. I'll be able to go back on my anti-inflammatories next week, which will help a lot.

One really weird thing, though....my tongue is bright yellow! It also looks furry....ewww. I'm pretty sure this is from antibiotics.

I guess you win some, you lose some, eh?

Monday, February 14, 2005

Well, duh..... 

Talked to a nurse from the facility where I had the biopsy done. She suggested that I may be sensitive to the adhesive in the steri-strips on my neck. I'm embarrassed to admit I didn't think of this myself.

I've had reactions to adhesives in Band-aids and standard medical tape and even had them use paper tape on my IV on Friday. But didn't even think that the steri-strips could be a problem, I guess because I've used them before with no itching. Things can always change though.

Anyway, the nurse said as long as I don't have any blisters or signs of severe irritation, I should be ok. Just no scratching of course. And if I really can't stand it, I can have the ENT remove them, although there aren't many other things I can tolerate that they could replace them with.

The pain is going down so that I haven't taken any meds for it today. But I'm still really sleepy and slow and not quite myself. And itchy, but at least now I know why.

Sunday, February 13, 2005

Ouchie and itchy.... 

Went from doing all right yesterday morning to feeling pretty crummy in the late afternoon and evening. I think it was because the incision in my neck started to swell up. I guess this is bound to happen in spite of all good intentions.

Even the pain meds I'm taking didn't help with the agony I started experiencing. Felt like someone had a knife in my neck and was twisting it around. Dan felt bad that he couldn't do anything to help me, but he sat next to me on the couch and watched some Valentine's specials with me, which was a good distraction.

I got very nauseous last night too. I don't know if it was from pain or meds or exactly what. I'm still getting it off and on.

The worst part, though, is this insane itching where the stitches are. Sometimes I have to sit on my hands to keep from scratching. I'm running a humidifier in the house, hoping that maybe if my skin isn't so dry, it won't itch as much, but so far it doesn't seem to help much.

Ok, so that's my big bad post-biopsy vent.

Saturday, February 12, 2005

Checking in briefly.... 

It was a long day yesterday, but I got through it.

Stayed up until 1am last night because I was putting ice on my neck once an hour 20 minutes at a time. I've learned from past experience that even though this is a hassle, there is a very good reason for the doc wanting you to do this. Today I have much less swelling than I would have if I'd just slept unstead of applying the ice.

I slept sitting up on the loveseat recliner, and took some Ambien to ensure I could sleep through the pain. I will probably do this for the next two nights. The reason I'm being so cautious is that I already have chronic lymphedema from the knees down and don't want to take any chances of developing inflammation problems anywhere else.

I won't lie; this does hurt. Like anything else, you take for granted how much you use a certain part of your body until the time you try not to use it. I'm being careful what I eat because it hurts to swallow, and figured out I have to lay on the bed to put in my eyedrops, and forget about coughing or sneezing!

Probably will take the maximum dose of pain medicine all day today and then switch to half doses tomorrow. Wish I could knock the pain down all the time, but I only have one medicaton I can tolerate, and it loses its effectiveness quickly if I take it too often, so I must adapt accordingly. I guess the only time I can be completely out of pain is when I'm unconscious.

But I will follow the doc's orders to the letter so that by the time of my follow-up appointment on Thursday, I'll be fully recovered. I watched "Groundhog Day" and "While You Were Sleeping" on DVD with Dan yesterday, and I have a house full of books, so at least I have entertainment. I probably won't spend a great deal of time on the computer, at least for awhile.

One thing: my neck itches terribly! I'm doing my best to ignore it.

Probably should go heat up some gluten-free soup.

Pain level: 4
Fatigue level: 8

Friday, February 11, 2005

Biopsy all done... 

Sneaking in while Dan's dozing downstairs, and before the surgery pain meds wear off.

It went fine. They didn't have to put a drain in it, although they want me to keep my head elevated as much as possible thru the weekend. It is a surprisingly large incision....I look a bit like Frankenstein.

The anaesthesiologist (sorry, can't spell right now) was very cooperative and worked around all the meds I can't tolerate and ones that cause excessive dryness (a no no for Sjogren's). She even wrote down what she used so that if I ever have another surgery, I'll know what to request. All the staff was good about using paper tape since I'm allergic to the other kind.

They did the IV up in the inside of the elbow instead of in the hand where it hurts so much. Got it on the first try, too.

I was allowed the option of a morphine shot while I was still there, and I took it. My pain level is down to a 2 everywhere except the surgery site, which is about a 3. How I wish I could have this low pain level every day!!

I am fairly clear-headed considering I only got home a little over an hour and a half ago. I am to take it easy for five days, no neck strain at all. I see the ENT for the results of the biopsy next Thursday.

Let's see, what else....oh, the reason they took such a large sample is that they will be running several tests to try to determine what's going on with the lymph nodes. It may be cancer, it may just be Sjogren's causing the swelling, or the cells may be abnormal in some other way. That's what pathologists are for.

Ok, can't think of anything else right now. Better get downstairs before Dan discovers I'm on the computer.

Thursday, February 10, 2005

Bonus Rave of the Day for February 10: 

Speaking of medical procedures, here's an oldie but a goodie....

A woman brought a very limp duck into a veterinary surgeon. As she lay her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm so sorry, your pet has passed away."
The distressed owner wailed, "Are you sure?" "Yes, I'm sure. The duck is dead," he replied. "How can you be so sure," she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something."
The vet rolled his eyes, turned around and left the room. He returned a few moments later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked at the vet with sad eyes and shook his head.
The vet patted the dog and took it out and returned a few moments later with a beautiful cat. The cat jumped up on the table and also sniffed the bird from its beak to its tail and back again. The cat sat back on its haunches, shook its head, meowed softly, jumped down and strolled out of the room.
The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck."
Then the vet turned to his computer terminal, hit a few keys, and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" She cried. $150 just to tell me my duck is dead?!!"
The vet shrugged and explained, "I'm sorry. If you'd taken my word for it, the bill would have been $20. But what with the Lab Report and the Cat Scan, it all adds up."

Biopsy Friday morning.... 

Yep, tomorrow I get my throat slashed. And I have to be there at 6AM! Most of you know how much of a night owl I am....I guess I'll be too much of a zombie to be nervous or anything.

Actually, the only part of this that concerns me is the stupid IV. I have stingy, practically invisible veins, and I average five attempts for every pre-surgery IV I've had. I've not been to this particular surgery center before....hope they have good vampires there.

Don't know which lymph node the ENT will sample....he had it narrowed down to two good candidates. This will be the third time he's had me in stitches. The first time was my sinus surgery in 2000, and the second was the lip biopsy in 2003.

Rave of the Day for February 10th: 

Speaking of annoyingly perfect people (see my entry below this one), here's a funny invoking the name of everyone's fave homemaker. Thanks to Ducky's Daily Grin....

Acute Case of Martha Stewart Disease

Here are a few signs that you may be in need of professional help:

• You serve wine to your guests in conch shells.

• You serve entrees in an attractive real bird's nest you found in a nearby forest.

• You make your own Jell-O from calves' hooves rather than buy the powdered stuff.

• You decorate your cakes with pieces of ceramic, bundles of chiffon, buttons, marbles and other inedible stuff because "it looks so pretty."

• You've macramed yourself a computer cozy from yarn, recycled plastic and pop-top rings.

• You've smeared the walls with yogurt so that over time a natural-looking greenish mold will grow, giving your home the fashionably distressed look of an ancient Greek temple.

• You sleep outside the house, in a tent, so that you don't spoil your perfectly made bed.

• All of the grass in your front yard is French braided.

• Each and every flower in the back yard is wrapped in raffia and sports a shiny red bow.

• Before you go to bed at night, you spend hours on your hobby farm putting the wool on your sheep's bodies in hot rollers, so they will look more fluffy and glamorous than the neighbor's.

A celebrity rarity.... 

Was watching Oprah this afternoon (have to admit I've gotten really fond of her show in the week and a half I've been off work). Jaclyn Smith was on there today. She's 57, stunning, and has had NO cosmetic surgery!

This is such a refreshing change from the norm. I don't know why most celebrities over 35 think they have to have "work" done on them. I think many of them look worse after cosmetic surgery than they would have if they'd just allow themselves to age naturally.

Maybe I'm weird, but I'm tired of seeing once beautiful women ruin their looks with outrageous collagen injections that give them lips the size of satellite dishes. And what's wrong with a few laugh lines? All these surgeries give the average person the false impression that you can't be pretty once you've aged.

Guess that's why I'm not a celebrity.

Pain level: 7
Fatigue level: 7

Monday, February 07, 2005

Rave of the Day for February 7: 

I thought a funny about fitness would be appropriate. I've seen this one make the rounds a few times, but it most recently came to me via honeycomb. Enjoy....

A little bit of humor on the subject of health & fitness
(The Facts)

Q: I've heard that cardiovascular exercise can prolong life. Is this true?

A: Your heart is only good for so many beats, and that's it...don't waste them on exercise.  Everything wears out eventually. Speeding up your heart will not make you  live longer; that's like saying you can extend the life of your car by driving it faster. Want to live longer? Take a nap.

Q: Should I cut down on meat and eat more fruits and vegetables?

A: You must grasp  logistical efficiencies. What does a cow eat? Hay and corn. And what are  these? Vegetables. So a steak is nothing more than an efficient mechanism of  delivering vegetables to your system. Need grain?  Eat chicken. Beef is also  a good source of field grass (green leafy vegetable). And a pork chop can give you 100% of your recommended daily allowance of vegetable products.

Q: Should I reduce my alcohol intake?

A: No, not at all. Wine is  made from fruit. Brandy is distilled wine, that means they take the water out of the fruity bit so you get even more of the goodness that way. Beer is also made out of grain. Bottoms up!

Q: How can I calculate my  body/fat ratio?

A: Well, if you have a body and you have body fat, your ratio is one to one. If you have two bodies, your ratio is two to one, etc.

Q: What are some of the advantages of participating in a regular exercise program?

A: Can't think of a single one, sorry. My philosophy  is: No Pain...Good

Q: Aren't fried foods bad for you?

A: YOU'RE  NOT LISTENING!!!. Foods are fried these days in vegetable oil. In fact, they're permeated in it. How could getting more vegetables be bad for you?

Q: Will sit-ups help prevent me from getting a little soft around the middle?

A: Definitely not! When you exercise a muscle, it gets bigger. You should only be doing sit-ups if you want a bigger stomach.

Q: Is chocolate bad for me?

A: Are you crazy? HELLO ...... Cocoa  beans ... another vegetable!!! It's the best feel-good food around!

Q: Is swimming good for your figure?

A: If swimming is good for your figure, explain whales to me.

Q: Is getting in-shape important for my lifestyle?

A: Hey! 'Round' is a shape!

Well, I hope this has cleared up any misconceptions you may have had about food and diets and remember,

"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways - Chardonnay in one hand -strawberries in the other - body thoroughly used up, totally worn out, and screaming - WOO HOO! What a Ride!"

February article for But You Don't Look Sick.... 

This month, I decided to venture into the realm of product reviews, mainly because I'm still reading the next book I want to review. I thought people might want to read about the Gazelle exercise machine since it is so difficult to find exercise products appropriate for people who cannot be athletic. Here's the article:

Gazelle Review

And if you haven't checked out the rest of this excellent website, I encourage you to do so, particularly the "Spoon Theory" page.

I'm in agony tonight. Not only am I hurting due to the lack of anti-inflammatories, I am dealing with an approaching cold front and a gloomy sky threatening snow. No matter what many doctors say, the weather DOES affect arthritis in some people. I did go to aquacise even though I could hardly walk, and it helped for awhile, but after I awoke from a nap later in the afternoon, the benefit seemed to have vanished. Rats.

I'm going to take a long hot shower.

Pain level: 9
Fatigue level: 7

Saturday, February 05, 2005

Rave of the Day for February 5: 

Finally watched the extended release of "Return of the King" on DVD this week. Awesome doesn't even begin to describe it. About 50 minutes of new material, including 15 brand new scenes and 24 extended scenes, bringing the final running time to 4 hours and 10 minutes.

Some of the scenes I wish they'd been able to include in the theatrical release as they provide answers to a few plot gaps. A lot of Eowyn's scenes were cut out, such as how she ended up with Faramir. But I know they were under time restraints as it was. Only one scene can I honestly say did not deserve to make the final cut. I like how Frodo and Sam were mistaken for orcs and were forced to march with the orc army, but I felt their getaway was a little too convenient.

And as with "Fellowship of the Ring" and "The Two Towers", I watched the movie a second time with the directors' commentary over it. Peter Jackson and the two ladies who helped him write and direct are hilarious! And they explain why they deviated from the book in some places, what in the film is real and what is computer generated, uncredited cameos, etc. For instance, Tolkien's great grandson appears ever so briefly.

I want to get a copy of the song that plays over the end credits, "Into the West", by Annie Lennox. So beautiful and so haunting. Perfect to close the trilogy.

And just like when I read the book the first time, I am almost sad that there is no more.

Soooo sore..... 

Have been off all anti-inflammatories since Monday in preparation for the lymph node biopsy on the 11th. Funny how I didn't really appreciate how much they were helping until I was without them for awhile. Groan.

Thanks to the Sjogren's, my joints are popping like Rice Krispies. And every single one of them aches, from my jaws to the big toes. Sleep was very difficult last night.

And thanks to the fibromyalgia, the pain has spread from the joints to everywhere else. I have a feeling I'll almost be grateful to be knocked out for awhile on Friday, just so I won't hurt.

Pain level: 9
Fatigue level: 7

Wednesday, February 02, 2005

Rave of the Day for February 2nd: 

This was one of my mom's all-time fave jokes. I'd forgotten all about it until it showed up on Ducky's Daily Grin. Thanks, Ducky!

Quasimodo, the demented bell ringer of Notre Dame, put an ad in the papers for a assistant bell ringer. One man applied for the job but he had no arms.  "How are you going to assist me?" asked Quasimodo.

"That's easy!" replied the man and he ran at the bell and banged it with his head. BONG!

"That's amazing!" said Quasimodo. "Could you show me that again?"
"Sure!" said the man and he ran at the bell again but he missed the swinging bell and fell out of the bell tower. A crowd huddled around the hapless man lying in the street and a police officer asked,
"Does anyone know who he is?"
Quasimodo came out and said...

Biopsy date changed.... 

Turns out the facility where I was to have the lymph node biopsy doesn't accept my insurance even though my ENT does. Weird, eh? But he does surgery at three other places which do take my insurance.

Luckily for me, there was a cancellation at one of the other facilities, so I'll be getting this done at the crack of dawn on Friday the 11th. Even though I'm definitely NOT a morning person, the early hour will be good for me because I'll have less time waiting around with no fluids (very tough for someone with Sjogren's). And since it's the first surgery of the day, less chance of delays.

Dan doesn't like having to get up at sunrise to take me, but he DOES like the idea of a three day weekend. He's going to take that night off work to keep an eye on me. It's always a good precaution even for simple things like this, when there's general anaesthesia and a sensitive patient involved.

Alas, I'm already feeling the effects of no anti-inflammatories (a pre-surgery requirement). My knees feel like there are shards of glass in them. I'm starting to think this leave of absence from work is a good idea.

So I'm still getting my throat cut, just not on Valentine's Day.

Pain level: 7
Fatigue level: 7

Tuesday, February 01, 2005

On medical leave again.... 

Went to my regular rheumatologist today. Hadn't seen him for three months, during which a LOT has happened. Took quite a bit of time just going over all the new stuff. He had gotten some of the info from the other docs, but the glucose test results were a surprise to him.

I asked him if I should take some time off in order for me to allow time for my new diabetes program, the new med for periodic limb movement disorder, and the lymph node mystery to all be dealt with. He agreed. I was going to ask for two weeks, and he surprised me by saying six.

He looked at the lymph nodes, and like the "second opinion" rheumatologist, thought they were suspicious. He was pretty adamant that I get a biopsy. He said in the absence of a very obvious cause like an infection it really should be examined.

After my allergy shot, I went to the ENT's office. The doc checked my neck and saw that the right side nodes were getting enlarged like the left, so he agreed to do a biopsy. He checked which nodes would be a good candidate and found two possibilities....one is between the carotid and the voice box and is by far the most swollen, and the other is toward the back and has two hard lumps in it.

This won't be a simple needle aspiration like the thyroid biopsy was. This will require general anaesthesia and stitches. I've had sinus surgery and my lip biopsy with this doc, and I trust him.

I need to go off all anti-inflammatories and Vitamin E, fish oil, etc. for at least a week before they can do anything because they don't want the increased risk of bleeding. So I am scheduled for February 14. I promised Dan we'd celebrate Valentine's Day the weekend before.

I am utterly wiped out, and must admit I am relieved to not have to go into work. It's always a little scary, though, monetarily I mean. But I'm pretty sure I was making myself sicker by pushing myself beyond my limits just to bring home a paycheck.

So I might get to spend more time here! I will also be able to nap after aquacise as needed. And spend quality time with Chip, the world's most spoiled English springer spaniel.

But right now, the couch is calling, and I plan to answer.

Pain level: 8
Fatigue level: 9

Ack! Triple booked! 

Got a call from the ENT's office this morning....they are giving me an emergency appointment Tuesday afternoon (meaning they're going to try to sneak me in between appointments). This is good, but I already have my regular appointment with my rheumy at noon and an allergy shot after that. How I'll have the energy to work after three appointments I don't know.

My head hurts too much for me to think of anything else to say.

Pain level: 9
Fatigue level: 7

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