Tuesday, June 29, 2004

Farewell to Donna Euteneier... 

I am quite ill and am having trouble communicating. But I wanted to pass this important message along. Hope all involved will forgive me for copying it directly from Fibrohugs. Suds, a good friend of the webmaster's, posted this about 6:30 tonight....

"It is with a sad heart and great sorrow that I have to tell you that Donna died this morning.

We know that she is our guardian angel....no longer shackled by this human body that was diseased. She is free, just as beautiful as she always was, and starting to set up her home for her family for the time that they will eventually join her and they will all be re-united.

Per Ken..
She had started having labored breathing at 6am.

At 10am, her breathing started slowing down as Ken was talking to her about his aunt and other family members who had died of cancer who were waiting for her with outstretched hands. When he started talking about their children, she opened her eyes and looked right at him.

She died at 11:10am, holding Ken's hand and looking right into his eyes. What a beautiful passing.

Prayers for Ken and the family are needed more now than ever. This is a pain that no-one can "prepare" for. So please, whatever you believe in, keep Ken and family in your thoughts etc.."

I fully expected Donna to do one more remarkable thing before she died. I am sure Ken did too.

I will add more when I am able.

Monday, June 28, 2004

Rave of the Day for June 28: 

A variation on the standard redneck joke. Thanks to Ducky for thinking of me when she saw this, heh heh....

You know your church is a redneck church if....

# 1,   The finance committee refuses to provide funds for the purchase of a chandelier because none of the members knows how to play one.

# 2,   People ask, when they learn that Jesus fed the 5,000, whether the 2 fish were bass or catfish, and what bait was used to catch 'em.

# 3,    When the pastor says, "I'd like to ask Bubba to help take up the  offering," five guys and two women stand up.

# 4,    Opening day of deer season is recognized as an official church  holiday.

# 5,     A member of the church requests to be buried in his 4-wheel drive  Ford truck because "It ain't never been in a hole it couldn't get out of".

# 6,  The choir is known as the "OK Chorale".

# 7,   Boone's Farm "Tickle Pink" is the favorite wine for communion.

#8,    In a congregation of 500 members, there are only 7 last names in the church directory.

# 9,  There is a special fund raiser for a new church septic tank.

#10, Finding and returning lost sheep isn't just a parable.

#11, High notes on the organ set the dogs on the floor to howling.

#12, People think the "rapture" is what you get when you lift something too heavy.

#13, The baptismal font is a #2 galvanized washtub.

#14, The choir robes were donated by (and embroidered with)  the logo from Billy Bob's Barbecue.

#15, The collection plates are hub caps from a '56 Chevy.

Chip's web page.... 

Decided I really needed some distraction this weekend and made a web page for Chip on Dogster. Here's the link:

Chip, English Springer Spaniel

While you're there, check out the rest of Dogster. Over 27,000 pages of pups! I particularly like reading the other woofer profiles.

I think while I'm at it I will add Chip's page to my list of links.

I'm better than I was on Friday, but still feeling weak and uncoordinated. My knees are stiff, not from arthritis, but because they seem to need to be reminded to bend. I still have a stutter that comes and goes. There seems to be an extra time delay between thinking of doing something and actually getting my body to do it. I am trying to decide whether or not it would be wise to go to work tonight. Sigh.

Pain level: 6
Fatigue level: 9

Saturday, June 26, 2004

Residuals from last night..... 

Today I'm feeling a little bit better physically but much better mentally. Is it any wonder people with chronic illness frequently suffer from depression? I mean, I usually have a good attitude, but every once in awhile, the sheer number of symptoms becomes overwhelming.

I still feel extremely weak. I've still got the stutter too. The burning pain in my legs has been replaced by stiffness....it's awkward to bend my knees when I'm walking. I've had spasticity before...so far, it has always worn off eventually. Probably by the time I could get in to see a doctor about it, it will be gone again. But I will make some notes this weekend to pass along to my rheumatologist this week and will make sure I tell the neurologist about it at my next appointment.

I wonder if this will be a recurring problem or one that could be prevented with medication? I've been reading up on neurological symptoms in Sjogren's....problem is, it's rare and hasn't been studied much. There is no proven reliable treatment as the symptoms come and go so much....too hard to tell if the treatment helped or if the problem would have gone away on its own anyway.

I went out today just long enough to grab some food to go from a Mexican place and took it home to eat (burrito without the tortilla). That's about all the activity I can handle. We had company for a few hours this afternoon....I sat on the couch talking and was ok (he's known me long enough to be used to the stutter, thank goodness). I'm just going to be mellow the rest of the weekend, maybe going to church tomorrow night but otherwise staying put.

On a sad note....Donna is back in her home town but is not expected to survive much longer. Her doctors are thinking she will breathe her last either tonight or tomorrow. Thankfully, she is surrounded by her family now. It is difficult to let someone go even when you know their passing will be a blessed event. Soon, she will be free of the restrictions of a diseased body. Her soul will soar again.

I have no doubt I will see her again....someday.

More than discouraged.... 

Can't seem to help it....every once in awhile, I just reach a point where it is all too much.

Since that time a week and a half ago when my hands and feet went numb, I've had a few brief occasions where I had trouble speaking clearly....an old problem that first showed up six years ago and caused the docs to think I'd had a stroke. This week a neurologist said she thought it was caused by Sjogren's. Tonight it got bad again....I either stutter, get all the words tangled up, or simply can't say what's in my head at all. I was making a lot of mistakes at work too....missing misspelled words, keying incorrect numbers, etc. Usually when I get like this, I have a bad headache too, but my head actually doesn't feel too bad.

If that weren't entertaining enough, I started feeling very weak, and my legs had a very aggravating burning pain. I considered a trip to the ER, but decided against it since it is doubtful they would find anything wrong and even more doubtful they'd be able to do anything for me. It seems to have calmed a bit now anyway. I probably have some inflammation going on somewhere that is affecting my speech and senses, but when this has happened before, no one was able to find the source.

And the fibromyalgia is worse than it has been in a long time. It always seems to feed on the Sjogren's pain, no matter what the source. My next neuro appointment isn't for another five weeks....she's going on vacation. I see the rheumy on Thursday....guess he'll be in for an earful.

Anyway, I'm waving the white flag. I really can't stand this. I've lost all my motivation to deal with it. I seriously need a break. I usually remind myself that it could be much worse, that at least I don't have anything fatal. But right now, I don't care. The thought of being this sick, or worse, decades from now is just unbearable. I really am overwhelmed by this stupid illness.

Pain level: 9
Fatigue level: 9

Thursday, June 24, 2004

Rave of the Day for June 24: 

This is kinda cutesy but suits my mood at the moment. Thanks for Andrea for sending it to me....

God bless my friends, and bless my children too
And God there's just one more thing, I wish that you would do,
If You don't mind me asking, to just bless my 'puter too??

Now I know that it's not normal to bless a small machine.
But listen just a second, and I'll try to explain.
You see, that little metal box holds more than odds and ends.
Inside those small components, rest a hundred loving friends.

Some, it's true, I've never seen and most I've never met,
We've never shaken hands or ever truly hugged, and yet,
I know for sure they love me, by the kindnesses they give,
And this little scrap of metal is how I get to where they live.

By faith is how I know them, much the same as I know you,
I share in what life brings them, so if it's OK with you..
Just take an extra minute from your duties up above.
To bless this little hunk of steel, that's filled with so much love.

Update on Donna.... 

Got word tonight that Ken will be taking her back to their hometown for the last time. She is still in a coma and not expected to awaken. Ken of course is devastated, but he knows his wife does not want extraordinary measures taken when there is no longer reasonable expectation of recovery. The docs will treat her pain and give her IV nutrition, but that is all.

Donna fought her cancer aggressively and with great spirit, never once giving up. Everyone has done everything they could. It is time for her to have a much-deserved rest, whether in this life or the next. Soon she will be led to the new home our creator has waiting for her. Times like this are always so bittersweet; the goodbye is painful even as the transition is a blessed one. How I wish I could say something to her in person.

I always pray for the best possible outcome in situations like this. Sometimes the best possible outcome is eternal peace, to have to fight for health and life no more. I believe our creator is wise enough to do what is right for the person we are praying for, even if that means someone's death. Some would ask what the point was in having Donna suffer so if she was not going to survive her cancer. This past year, her courage and her love for Ken have inspired thousands of people all over the world. Many have read her story and have been able to put their own lives into perspective. We may never know how many people have become stronger for knowing her, even if most of them never met her. That has to count for something.

Pain level: 7
Fatigue level: 9

Wednesday, June 23, 2004

Rave of the Day for June 23: 

I hesitated about posting this joke because it's probably not politically correct. But it IS funny....

After his death, Osama bin Laden went to heaven.

There he was greeted by George Washington, who proceeded to slap him across the face and yell at him, "How dare you try to destroy the nation I helped conceive!"

Patrick Henry approached and punched Osama in the nose and shouted, "You wanted to end our liberties but you failed."

James Madison entered, kicked Osama and said, "This is why I allowed our government to provide for the common defense!"

Thomas Jefferson came in and proceeded to beat Osama many times with a long cane and said, "It was evil men like you that provided me the inspiration to pen the Declaration of Independence!"

These beatings and thrashings continued as John Rudolph, James Monroe and 66 other early Americans came in and unleashed their anger on the Muslim terrorist leader.

As Osama lay bleeding and writhing in unbearable pain an Angel appeared.

Bin Laden wept in pain and said to the Angel, "This is not what you promised me."

The Angel replied, "I told you there would be 72 Virginians waiting for you up here. What did you think I said?"

EMG results.... 

Went to the appointment after only 6 and a half hours sleep, which was a good thing in a way....I was too derned exhausted to be nervous about the test.

Luckily, the neurologist decided to do the electric shocks rather than the needles. I didn't find it that bothersome because I'm constantly getting shocks from static electricity whenever I touch anything metallic. I short out computers, watches, even street lights. I joked to the doc that I might short out her EMG machine. The shocks were even kind of interesting in the involuntary reflexes they caused. Whenever I have the conventional reflex tests (the hammer thing on the knee), I have no reaction at all. I opted not to look at what the doc was doing, figuring I would be more relaxed between zaps. It helped that there was a reproduction of a really cool Van Gogh painting of irises on the wall...I concentrated on looking at that when the zaps got really bad.

We started with my right hand since it had been giving me the most trouble. The shocks were quite painful but not terribly upsetting. Surprisingly, the hand tested normal.

Since the hand seemed ok, we were going to just do one foot, the right one. But when she got abnormal responses in a few different areas, the doc decided we'd better do the left one as well. The left turned out to be worse than the right, so she needed to do at least one needle placement. She put a needle in the calf muscle next to the shin bone and had me flex my foot upward with the needle in place. Excruciating!! I was practically in tears, so she decided that was enough.

So the verdict is that I do have peripheral neuropathy in my feet, probably caused by Sjogren's. But the neuro's opinion is that the incident two weeks ago with numbness from the elbows down and the knees down was actually something different. She said that Sjogren's can cause other neurological problems besides neuropathy. She's of the opinion that the stroke-like episode I had six years ago was probably Sjogren's...I'm inclined to agree.

I need more tests. The doc is going to go over my medical records from 1998 and 1999 when I last had very active neurological symptoms and check which tests were done. Some will need to be repeated and compared to the old ones. She's also going to track down some articles for me to read on neurological manifestations of Sjogren's. Unfortunately, she's about to go on vacation, so my follow-up appointment won't be for another five weeks. But at least the process has been started.

I have mixed feelings about this. On the one hand, it is reassuring in an odd way that there is actually something documentable going on. On the other hand, it's no picnic to have yet another thing wrong with me.

I am quite ouchy tonight. I think the test caused a mini fibromyalgia flareup.

And the saga continues.....

Pain level: 8
Fatigue level: 8

Tuesday, June 22, 2004

Rave of the Day for June 22: 

Got this in an e-mail from Joan some time ago...I think today would be a good day to share it with the world...

When you have an "I Hate My Job" day, try this.

On your way home from work, stop at your pharmacy and go to the thermometer section and purchase a rectal thermometer made by Johnson and Johnson.

Be very sure you get this brand.

When you get home, lock your doors, draw the curtains and disconnect the phone so you will not be disturbed.

Change into very comfortable clothing and sit in your favorite chair, open the package and remove the thermometer.

Now, carefully place it on a table or a surface so that it will not become chipped or broken.

Now the fun part begins -

Take out the literature and read it carefully.

You will notice that in small print there is a statement, "Every rectal thermometer made by Johnson and Johnson is personally  tested."

Now, close your eyes and repeat out loud five times, "I am so glad I do not work for quality control at Johnson and Johnson."


EMG Tuesday morning.... 

Might be interesting because I have a phobia of needles and of being poked with sharp objects. Have had this fear since I was seven and someone tried to give me a spinal tap without anaesthetizing me first.

The numbness and tingling have calmed down quite a bit since the incident two weeks ago when everything from the elbows to the fingers and from the knees to the toes went numb all at once. Half of the ring finger on my right hand has been numb for about 12 hours today, but all the other odd sensations today have been brief (good thing too....sometimes they really really hurt).

Guess I'd better not stay up too late.

Pain level: 6
Fatigue level: 8

Sunday, June 20, 2004

Rave of the Day for June 20: 

As many of you know, my "evil twin" is Canadian and I am American. Therefore, when Ducky sent me this in an e-mail, I practically fell out of my chair laughing. Enjoy.....

Canadian Complaints about Americans
Editor's Note: naturally we don't have enough room to catalog all of them, but here's the top ten.


10. Won't acknowledge enormous cultural contributions of Jim Carrey and Howie Mandel.

9. We're pretty sure they're holding Wayne Gretzky down there against his will.

8. Every time we mention the city "Regina", they won't stop giggling.

7. Incredibly, they only have one word for "snow".

6. In American encyclopedias, Canada often called "North Dakota's gay neighbor".

5. They call it American cheese, even though it was invented by Gordon Lightfoot.

4. They've never even heard of our most popular superhero, Captain Saskatchewan.

3. Two words: "Weird Al".

2. Sick of that gap-toothed loser on "The Late Show with Paul Shaffer".

1. Not enough guys named "Gordie".


My hometown baseball team won! Went to the game with some co-workers tonight. Got to see a FIVE run inning, some double plays and some amazing catches. No home runs, though, which is rare for my team.

We were clear up on the third deck, which meant a fair amount of walking. Had some numbness in my feet during the game and sharp pains walking back to the car, but still made it back ok. Luckily, it didn't get too cold...mid-'50's during the game instead of the mid-'40's and rain originally predicted. Had some peanuts and a huge dill pickle in addition to lemonade....weird combination, but there are serious limits as to what I can eat at the ballpark. Got very very tired, but I've been that way most of the week anyway.

I think my co-workers were surprised to see what a baseball fan I am....I bring my binoculars and holler with the loudest of them, heh heh. I don't follow the games as much on the TV or radio as I used to, but I still love to go to them in person.

Pain level: 7
Fatigue level: 8

Wednesday, June 16, 2004

Rave of the Day for June 16: 

Even if this didn't really happen, it probably should have. Thanks to Ducky for this one.....

Reportedly a true story:

On a British Airways flight from Johannesburg, South Africa; a middle-aged, visibly well-off white South African lady found herself sitting next to a well dressed black gentleman.

She called the cabin attendant over to complain about her seating.

'What seems to be the problem, Madam?' asked the attendant.

'Can't you see?' she loudly snapped, 'You've sat me next to a Kaffir. I can't possibly sit next to this disgusting man. Find me another seat!'

'Please try to be calm, Ma'am,' the stewardess replied. 'I believe the economy section is completely full today, but I'll go and check to see if we have any upgraded seats available in club or first class.'

The woman cocked a snooty look at the outraged black man beside her (as well as many of the other nearby passengers). Minutes later the stewardess returned.

'Ma'am, as I suspected, economy is full. I've spoken to the cabin services director, and club is also full. However, we do have one seat in first class.' Before the lady had a chance to answer, the stewardess continued: 'Please realize, it is most extraordinary to make this kind of upgrade. I have had to get special permission from the captain. But, given the extreme circumstances, the captain felt that it was outrageous that one of our passengers should be forced to sit next such an obnoxious person.'

The lady, cannot help but look at the people around her with a smug and self-satisfied grin.

With that, the stewardess turned to the black man and said: 'So if you'd like to get your things, sir, I have your first-class seat ready for you...'

At which point, the surrounding passengers burst into a standing ovation while the man walked to the front of the plane.

Get up and go got up and went.... 

And here I was all proud of myself for not having to take a day off for three straight weeks.

Didn't do anything unusual today...went to aquacise as I do every Wednesday. Was incredibly tired the whole time, but I usually am. Got home, took my shower. Came downstairs to talk to Dan and just had to sit down. We needed to run some errands, and he was asking me which we should do first. I heard him, but by the time I tried to reply, I couldn't remember what he said, and I couldn't organize my thoughts enough to make a decision or even say so. And I couldn't get off the couch. I knew if I went to work, I wouldn't be able to stay awake or get any ads done. So with Dan's help, I climbed off the couch and called in sick.

Went back to bed at 2pm...didn't sleep very well because of intense storms in the area. Thunder kept shaking the house and waking me up. Turned on the news at 4pm but was drifting off again by 5pm. Back to sleep until 7:30. Trouble is, I'm STILL exhausted, but at least I'm able to communicate again. I'm hoping if I go back to sleep at my regular time tonight I'll be able to get some energy back.

Chip is sleeping on my foot. The foot has gone numb, but he's sooo cute I just hate to wake him and get my foot back. Poor pup....his arthritis is getting worse. The anti-inflammatory we had him on (Rimadyl) was no longer helping after only eight months, so we had to put him on a stronger one. I can't remember the name of the new one, but I think it's the doggie equivalent of the Vioxx I take.

I sure hope I don't stay this tired.....

Pain level: 7
Fatigue level: 9

Monday, June 14, 2004

Rave of the Day for June 14: 

Speaking of cognitive dysfunction (see post below), I can relate to this funny even though I don't quite fit the category yet. Thanks to Ducky again....

I thought you would want to know about this e-mail virus. Even the most advanced programs from Norton or McAfee cannot take care of this one. It appears to affect those who were born prior to 1950.


1. Causes you to send the same e-mail twice.

2. Causes you to send a blank e-mail.

3. Causes you to send e-mail to the wrong person.

4. Causes you to send it back to the person who sent it to you.

5. Causes you to forget to attach the attachment.

6. Causes you to hit "SEND" before you've finished.

7. Causes you to hit "DELETE" instead of "SEND."

8. Causes you to hit "SEND" when you should "DELETE."


Where'd the weekend go?? 

Dan got back this afternoon from his family visit to South Dakota. I downloaded the pix he brought back on the digital camera tonight. Here's one of him giving his neice a bottle:
Dan and Elaina

Dan and I went to dinner tonight and then the grocery store, and we watched the DVD of "Return of the King" he bought me. I am wiped out.

Got a call late Friday afternoon that there was a cancellation at the neurologist's, so I can get in tomorrow. I typed up a list of symptoms she should know about. Besides the numbness/tingling in the extremities, I have the same problem on the left side of my face from time to time. I also will mention the loss of grip strength in my hands, my tremors and muscle spasms, and the recent increase in cognitive dysfunction. I don't know if these are separate problems or all symptoms of the same problem. I guess that's why I'm not a doctor.

I'm not really ready for another workweek, but I seldom am.

Pain level: 6
Fatigue level: 8

Saturday, June 12, 2004

Rave of the Day for June 12: 

Even though my heart is heavy, there is always room for some humor. This one has been circulating the internet. Got it in an e-mail from Joan....

Motherly Wisdom

"I don't care where you think you have to go, young man. Midnight is past your curfew!"

"After all that money your father and I spent on braces, Mona, that's the biggest smile you can give us?"

"Humpty, If I've told you once, I've told you a hundred times not to sit on that wall. But would you listen to me? Noooo!"

"I don't care what you've discovered, Christopher. You still could have written!"

"Mike, can't you paint on walls like other children? Do you have any idea how hard it is to get that stuff off the ceiling?"

"All right, Napoleon. If you aren't hiding your report card inside your jacket, then take your hand out of there and prove it!"

"Now, George, remember what I told you -- don't go biting off more than you can chew!"

Again with the stovepipe hat, Abe? Can't you just wear a baseball cap like the other kids?"

"I realize strained plums are your favorite, Barney, but you're starting to look a little purple."

"It's a nice car, Bruce, but do you realize how much the insurance is going to be?"

"I've got a bill here for a busted chair from the Bear family. You know anything about this, Goldie?"

"Well, all I've got to say is if you don't get off your tuffet and start cleaning your room, there'll be a lot more spiders around here!"

"But, Albert, it's your senior picture.Can't you do something about your hair? Styling gel, mousse, something...?"

"The next time I catch you throwing money across the Potomac, you can kiss your allowance good-bye!"

"That's a nice story, but now tell me where you've really been for the last three days."

"Clark, your father and I have discussed it, and we've decided you can have your own telephone line. Now will you quit spending so much time in all those phone booths?"

"Of course I'm proud that you invented the electric light bulb, Thomas. Now turn off that light and get to bed!"

Thoughts of Donna.... 

...haven't mentioned on this blog (did on my previous one) that I've had the good fortune to meet the webmaster of Fibrohugs.com, Ken Euteneier (who has fibromyalgia himself) and his wife Donna. There was a fibromyalgia conference in Colorado Springs in 2002, and I got to spend a fair amount of time talking to them about the ups and downs of running a successful website and find out a bit about their hometown of Regina, Saskatchewan, Canada. It was inspiring to meet people so dedicated to raising awareness and providing crucial support for those with chronic illness. And so funny! We laughed late into the night.

Last year, Ken began a site for people with cancer, never dreaming that just a few months later, Donna would be diagnosed with multiple myeloma. They both faced this challenge with great courage, bolstered by prayers from literally all over the world. The hosptial treating Donna was 150 miles from their home, which meant long commutes for Ken, who was trying to balance illness with childcare and running a glass-etching business out of his home. Donna had to be quarantined frequently during her treatment, so there were times Ken couldn't see her when he wanted to.

A fibromyalgia conference had been planned in August 2003 near Regina but had to be cancelled after Donna's diagnosis. Several of us who had made reservations decided to get together anyway. We were from various parts of the US and Canada. We spent some time at a nearby spa and socialized to our heart's content. One of the evenings we were in Regina, we went out to dinner with Ken and his boy Mike. Ken was all smiles, but I could sense the heavy heart and exhaustion behind it. After we ate, we decided to surprise Donna, who was at home but under quarantine, and at least wave to her from the yard. She appeared at the door, tears of happiness in her eyes, looking a bit tired but strong. She came out onto the front porch for awhile so we could talk with her. I got to give her a hug.

As the months passed, Donna passed through the first round of chemo with flying colors. Things were looking up. She had had her own stem cells harvested before the chemo and was to undergo a procedure to return those cells to her. Then they got the awful news that the cancer had returned much sooner than expected. More aggressive measures were called for, and the hazards to her survival became greater. Recently, she was given the option to discontinue treatment, which would mean certain death, or to undergo a risky stem cell transplant from her brother, who was a perfect match. She was told she might not survive the surgery. She decided it would be a worthwhile gamble. The surgery itself was a success, and doctors were calling it a miracle. But something unexpected happened. Donna began to show signs of a stroke or something similar. Then last week, her heart stopped. Doctors were able to restart it, but she slipped into a coma. There was a chance that one of her medications was the culprit, so they discontinued it with the hope that when it left her system, she would revive. So far, she has not awakened.

Now Ken is facing one of the most difficult decisions of his life. Donna had requested some time ago that should she ever be in a vegetative state that she not be kept alive by machines. They are waiting until Monday to determine if she is likely to recover from the coma. If she is not, the family may opt to have the life support shut off. Ken continues to be amazing through all this. He loves his wife so much, and it must break his heart to see her suffer. But his faith remains, and it will give him the strength to do whatever he must do. Both of them have been a great inspiration to me.

I wish I wasn't so far away. I feel helpless. The very least I can do is tell others that there are good people in the world and that we should take whatever opportunity we have to appreciate them.

Friday, June 11, 2004

Latest but not greatest news.... 

I've wanted to update here for awhile, but I'm extra busy with Dan not being here (he's in South Dakota visiting family and friends until Sunday). Also, physical circumstances have prevented me spending much time on the computer at home. So I will attempt to catch up, as briefly as I can, anyway.

Monday night while driving home from work, my arms from the elbows down, my legs from the knees down, my hands and my feet all went numb at the same time. Not complete numbness...I could still tell where my foot was on the accelerator, but the kind of tingly numbness you get when your foot is waking up after having been asleep for awhile. I've had neuropathy-type symptoms for years now, but they were usually brief, random and in only one body part at a time. This was a new experience altogether. It lasted until I woke up the next day, then started slowly creeping back in over the course of the day. It has been doing this off and on ever since.

So I called the rheumatologist's office and asked what to do. He wanted me to see a neurologist. The one he recommended is the same woman I went to five years ago and didn't like. I didn't have a diagnosis at that time, and I think we were both frustrated that she couldn't pinpoint the cause. I'm giving her another chance, though, since knowing about the Sjogren's will probably make things easier. I do have the name and addy of a co-worker's neurologist just in case I still don't get along with this one.

I've got an "emergency" appointment on June 22. I'm also on standby in case there are any cancellations between now and then. The receptionist is not the same one as when I was a patient five years ago....this lady is really pleasant and helpful, whereas the last one was quite rude. I'm taking this as a good sign.

Right now, the fronts of my calves are burning, the right foot is a bit numb, and the other foot and both hands are tingling. Ew.

It has become impossible to hide this problem at work because it is quite painful. Some of the pains are quite sharp and have me practically in tears. I hate to say it, but it is clear to me that working aggravates it. I will wait for the neurologist's opinion, but I guess it wouldn't hurt to mentally prepare for the possibility that I may have to go on leave. I have soooo many things hampering my ability to work....this could be the last straw.

Dan called yesterday, and I had to tell him about this. I didn't want to, because I didn't want him to worry about me, but I knew if I waited until he got home and he saw how bad I was, he'd be angry for not saying anything. Poor Dan....I hate that I have to be so sick, for both our sakes.

Pain level: 7
Fatigue level: 7

Monday, June 07, 2004

Rave of the Day for June 7: 

Watched part of a four DVD set that I have called "Funny Ladies". It's basically a cheap production of standup comedian clips from the 80's, but I LOVE it! I've seen nearly every single one of those women on HBO at one time or another. One cool thing about it is that you can play it loud enough to hear while in the kitchen washing dishes or something and not miss much.

I took me out to the ballgame.... 

Whew! What a day! The baseball game was at 1pm. We knew it was going to be hot today, so we didn't take our seats until right before the first pitch. I had awesome seats....near 1st base, 9th row. When you sit that close, you really have to pay attention to the game in case a foul ball comes your way. Three landed in our section; one was five rows directly in back of us.

Behaved myself and wore the granny hose even though I was sweltering in them; it was 94 degrees during the game! I put SPF 30 on my face and arms (I was wearing a tank top), but it rained a bit during the middle innings and washed it off. Then the sun came back out for the last two innings. Thank goodness I'm not photosensitive this year....I got just a bit of sunburn, about normal for someone who sits outside for three hours. I've already had a shower and put Solarcaine with aloe on my pink shoulders.

Had popcorn and fresh-squeezed lemonade at the game along with my health bar. My friend and I had a more sensible meal after the game. I was a little bit wobbly on all those stairs, but I just went slowly and did all right. I'm probably going to go to another game with a bunch of co-workers on the 19th; that will be an evening game.

My team did lose (16-4, ouch), but I got to see Barry Bonds hit a homer, a sweet double play by my team and some great catches. And I brought my binoculars so I could even see the expressions on the players' faces. There were over 37,000 people at the game, so people watching was also quite fun.

I'm pretty exhausted, and my muscles are all twitchy, but I think I'll watch some movies tonight with my feet up and see if I can't get the edema to recede. It was definitely worth it.

Pain level: 6
Fatigue level: 9

Saturday, June 05, 2004

Rave of the Day for June 5: 

With Dan on vacation, I'm spending extra quality time with Chip (who tends to mope whenever Dan's not around). In honor of the world's most spoiled English springer spaniel, here's a doggy funny....


10. There's potpourri hanging from his/her collar.

9. The dog's nails have been cut with pinking shears.

8. The dog toys are all stored in McCoy crocks.

7. The pooper scooper has been decorated with raffia bows.

6. That telltale lemon slice in the new silver water bowl.

5. You find liver and whole wheat dog treats stamped out with copper cookie cutters and decorated with royal icing using a #2 rosette tip.

4. Dog hair has been collected and put into wire baskets for nesting material for the birds.

3. A seasonally appropriate grapevine wreath adorns the front of your dog's crate.

2. Your dog goes outside naked and comes in wearing a thyme colored virgin wool hand-knitted sweater with matching boots.

1. The dog droppings in your backyard have been sculpted into swans.
copied from Petwarmers.com

Good things..... 

Met a new doctor on Thursday. Had had canker sores in my mouth for a solid month (Sjogren's strikes again) and was getting so I didn't want to eat due to the pain, so I called the primary doc's office. My doc was all booked up, so they asked if I wanted to see her new associate. I hesitated for a moment because one of the others docs in that office is a real jerk, but then I decided to go ahead because my mouth was burning like crazy. The new guy was really friendly....nice smile. I explained the problem I was having. He knew what Sjogren's was (surprising how many docs don't), but wasn't too familiar with what is usually done for canker sores. Rather than guess, though, he excused himself for a moment and actually went and looked it up in some books. He came back and apologized for having to leave, but explained he wanted to make sure he didn't overlook anything. He gave me scripts for a special mouthwash and a steroid preparation for the mouth. So I will make sure I see the new doc whenever my regular one is unavailable.

Earlier this week, I saw an ad for a new local restaurant due to open in a few weeks. It billed itself as specializing in natural foods suitable for vegans and/or people with special dietary needs. I looked up the website to see what was on the menu. Some of the dishes looked promising for someone with celiac disease, but I wasn't completely sure, so I e-mailed the restaurant. To my surprise, the restaurant owner sent me a reply within a few hours. He told me what on the menu was gluten-free and mentioned that he'd had trouble finding any recipes for gluten-free bread that tasted good. He actually asked me if I had any ideas! I suggested looking into something with buckwheat (despite its name, it does NOT contain wheat) and potato flour or maybe eggs. He sent me a reply saying he'd discuss it with his chef! Way cool! It 's sooo hard to find healthy food in restaurants....I'm very impressed with this owner's efforts and will make sure I visit his place when it opens.

Dropped off Dan at the airport yesterday for his vacation. He went back to South Dakota to visit friends and relatives. I think the poor man really needed a break from taking care of me and worrying about how we'll manage financially once I go on disability. I don't really mind staying home because it means he can go wherever he likes with his friends without me slowing him down. I believe they were headed for the Mall of America in Minneapolis this weekend.

Tomorrow I will be going to a professional baseball game! Yep, I've got some very nice seats for a friend of mine and me. Sort of a gal's afternoon out. Hate the idea of having to wear the granny hose and get them all sweaty, but it's the price I pay for fun, I guess. I will be doing something different this year: I got a parking pass so I can park in the closest lot. I used to just park at work for free, take the shuttle down the outdoor mall and then walk five blocks to the ballpark. I could probably still walk that far before the game, but I doubt I'll be able to after the game because I'll be all stiff from sitting. Besides, I think those stadium stairs will be exercise enough. I will be bringing a cushion for the stadium seat and a gluten-free protein bar for a snack.

Oh, and today I saw a Western tiger swallowtail butterfly! Yay!

Pain level: 6
Fatigue level: 8

Wednesday, June 02, 2004

Rave of the Day for June 2: 

Really need some amusement right now. Some of these may be review, but I still think they're hilarious. Courtesy of Ducky and her Daily Grin:

Still More Fun Puns

-- Local Area Network in Australia: the LAN down under.

-- He often broke into song because he couldn't find the key.

-- Every calendar's days are numbered.

-- A lot of money is tainted - It taint yours and it taint mine.

-- A boiled egg in the morning is hard to beat.

-- He had a photographic memory that was never developed.

-- A plateau is a high form of flattery.

-- A midget fortune-teller who escapes from prison is a small medium at large.

-- Once you've seen one shopping center, you've seen a mall.

-- Bakers trade bread recipes on a knead-to-know basis.

-- Santa's helpers are subordinate clauses.

-- Acupuncture is a jab well done


Fun Puns

-- Those who jump off a bridge in Paris are in Seine.

-- A backward poet writes inverse.

-- A man's home is his castle, in a manor of speaking.

-- Dijon vu - the same mustard as before.

-- Practice safe eating - always use condiments.

-- Shotgun wedding: A case of wife or death.

-- A man needs a mistress just to break the monogamy.

-- A hangover is the wrath of grapes.

-- Does the name Pavlov ring a bell?

-- Reading while sunbathing makes you well red.


More Fun Puns

-- When two egotists meet, it's an I for an I.

-- A bicycle can't stand on its own because it is two tired.

-- What's the definition of a will? (It's a dead giveaway.)

-- Time flies like an arrow. Fruit flies like a banana.

-- In democracy your vote counts. In feudalism your count votes.

-- She was engaged to a boyfriend with a wooden leg but broke it off!

-- A chicken crossing the road is poultry in motion.

-- If you don't pay your exorcist, you get repossessed.

-- With her marriage, she got a new name and a dress.

-- When a clock is hungry, it goes back four seconds.

-- The man who fell into an upholstery machine is fully recovered.

-- You feel stuck with your debt if you can't budge it.

Crunching numbers..... 

I've been spending some time lately casually researching disability and what that would mean for me. I haven't really engrossed myself in it because I still haven't quite accepted that I really could be disabled. I finally got the courage last night to look up what I could expect to receive per month should I file now. Seeing the actual numbers makes this a daunting prospect indeed.

Now I'm trying to figure out how on earth I'd get by on half my present income. It's frustrating because if I could just hold out for a few more years, it wouldn't be a problem. The home equity loan would be paid off in just 8 years, and the mortgage would be paid off in just 14 years. The other irony is that I have been poor before....but it was much easier to get by on less then because I was healthy. The doctors, the meds, the supplements and the special diet really add up now.

I've weighed several possibilities, but I haven't really come up with anything that would really save that much money. We could sell our house, but its value is far below the average price in this area, and rent on an apartment would cost us just as much as the house. Plus we're mortgaged to the hilt. We could move someplace with a lower cost of living, but Dan's line of work does not pay much elsewhere, so I'm not sure it would be much of an advantage.

So far, all that has happened is that I've gotten myself and my hubby upset, and now I'm even more determined to keep working. I think I'll make an appointment with my primary care doc to see if she has any ideas on what I could do to get enough energy to keep my job. I'm just not ready to give in yet. The unknown scares the poop out of me.

It's past my bedtime, but I just wanted to get this out of my system. Sigh.

Pain level: 8
Fatigue level: 8

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