Thursday, January 31, 2008

Rave of the Day for January 31, 2008: 

To celebrate the return of "Lost" to television, how about testing your knowledge of the show? Here are 50 questions covering the first three seasons....

Lost Quiz

I managed to get 39 correct, not bad for someone with memory problems but not quite what you'd expect from a totally obsessed fan. Still, I'm pleased.

Now, if I could just figure out if Charlie is really dead....

Updates on dis n dat...... 

Talked with the assistant of the neurologist I saw at Mayo. She told me that the person who did my nerve conduction study was also a neurologist, so my medical insurance should be paying for it. She was very nice and said she'd write up a letter providing the info, have the doc sign it, and then I can give it to the insurance company as proof and save myself $1500.

Got all the documentation from Mayo on my tests and consultations. The doctor notes pretty much exactly mirror what was discussed, so no big surprises other than a few findings on the neuro exam that I will look up. Final diagnoses were: sprue, presumed, clinically apparent; and Sjogren's syndrome, partially fulfilled diagnostic criteria (4/6), seronegative.

Talked to my lawyer yesterday about the long-term disability insurance company termination of benefits. We have already exhausted the appeals, and it is time to go ahead and file a lawsuit. I have sent copies of my Mayo notes, and he will put the final draft of the suit together, I will review it, and if it meets my approval, we will send it out next week.

Dan actually did get offered the job he was interviewed for, but they couldn't pay anything close to what he's making now, so he had to turn it down. I so wish I was working so he could afford to take a temporary pay cut while he switches to a more promising job field. But with my long-term disability benefits gone, bills from the Mayo Clinic possibly reaching five figures, and very few expenses we can reduce or eliminate, I'm afraid the poor man is stuck.

Switched to the full dose of Imuran on Tuesday. Gotta say I'm not noticing much except for some stomach pain; no change at all in fatigue, cognitive function or joint problems. But I may have to be on it for awhile, possibly even months, before I know its full effects, and the bloodwork may indicate improvement before I feel any beter.

I do know one thing, though: my fibromyalgia is having a field day. Getting muscle cramps literally head to toe, especially spasms in my neck and scalp causing daily headaches. And my pain level is wayyyy high.

Gotta get ready to watch "Lost"!! I've only been waiting eight months!

Later, alligator.

Wednesday, January 30, 2008

Rave of the Day for January 29, 2008: 

Here's a link to an expanded story about doctors' reactions to the inflammatory article the New York Times published about fibromyalgia (scroll down a bit to get a link to the original article):

Fibromyalgia Network News: Doctors Respond to New York Times Article

I am glad to see someone is sticking up for people with fibromyalgia. I would give just about anything to have this not be a real physical ailment so I could return to the workforce, regain my independence and have a productive social life.

I bet my long-term disability insurance company is citing this article as "proof" that fibromyalgia is no more than a glorified term for somatoform disorder, which would get them out of paying millions of dollars in claims to people whose contracts have a mental illness limitation. People like me.

I've got better things to do than to make this shit up.

Tuesday, January 29, 2008

Update on the financial crisis.... 

Spent some time on the phone today with the medical insurance company and Mayo Clinic. Didn't make much progress, but I have a general idea of what to do next. I must say I've had it up to my eyeballs with the insurance guys, but I suppose the more I must use insurance, the more I can expect to run into some kind of snag.

They aren't covering the nerve conduction study because they don't know what type of doctor did it! The only way they will pay for a nerve conduction test is if the person performing the exam is a neurologist. It was the Mayo Clinc, for heaven's sake; I'm sure that whatever person did the test was more than qualified.

But in order to get this covered, I must prove to the medical insurance company that an actual neurologist did the test himself. The report I have from Mayo just has the names of who conducted the study, not their credentials. I called Mayo and talked to the neurology department, and they are going to have someone call me back.

I also talked to Mayo's Patient Account Services department. They said that I can certainly set up a payment plan, but I'll have to wait until all the charges have been processed, which will take awhile as my most recent visit was just a couple of weeks ago. They will work with me once I know for sure the grand total of what I owe them, which I suppose makes sense.

My insurance company is weird. The only reason I put up with them is that I'm on a ton of meds and Medicare Part D won't cover nearly enough of them. But much better than no insurance, right?

Sunday, January 27, 2008

Rave of the Day for January 27, 2008: 

I may have posted this funny at least once before, but it's worth a repeat. Thanks to Pete....

Subject: To our dogs & cats

To be posted VERY LOW on the refrigerator door - nose height.

Dear Dogs and Cats,

The dishes with the paw print are yours and contain your food. The other dishes are mine and contain my food. Please note, placing a paw print in the middle of my plate and food does not stake a claim for it becoming your food and dish, nor do I find that aesthetically pleasing in the slightest.

The stairway was not designed by NASCAR and is not a racetrack. Beating me to the bottom is not the object. Tripping me doesn't help because I fall faster than you can run.

I cannot buy anything bigger than a king sized bed. I am very sorry about this. Do not think I will continue sleeping on the couch to ensure your comfort. Dogs and cats can actually curl up in a ball when they sleep. It is not necessary to sleep perpendicular to each other stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out the other end to maximize space is nothing but sarcasm.

For the last time, there is not a secret exit from the bathroom. If by some miracle I beat you there and manage to get the door shut, it is not necessary to claw, whine, meow and try to turn the knob or get your paw under the edge and try to pull the door open. I must exit through the same door I entered. Also, I have been using the bathroom for years --canine or feline attendance is not required.

The proper order is kiss me, then go smell the other dog or cat's butt. I cannot stress this enough!!

To pacify you, my dear pets, I have posted the following message on our front door:

To All Non-Pet Owners Who Visit & Like to Complain About Our Pets:
1. They live here. You don't.
2. If you don't want their hair on your clothes, stay off the furniture. (That's why they call it "fur"niture.)
3. I like my pets a lot better than I like most people.
4. To you, it's an animal. To me, he/she is an adopted son/daughter who is short, hairy, walks on all fours and doesn’t speak clearly.

Remember: Dogs and cats are better than kids because they:
1. Eat less
2. Don't ask for money all the time
3. Are easier to train
4. Normally come when called
5. Never ask to drive the car
6. Don't hang out with drug-using friends
7. Don't smoke or drink
8. Don't have to buy the latest fashions
9. Don't want to wear your clothes
10. Don't need a gazillion dollars for college, and...
11. If they get pregnant, you can sell their children.

Saturday, January 26, 2008

Rave of the Day for January 26, 2008: 

A couple of links about fibromyalgia. The first is about a study on how much adverse affect the ailment has upon a person with it:

FM has greater impact than other chronic conditions

Have you seen the ads for Lyrica, which is the first medication to be approved by the FDA as a treatment for fibromyalgia? They were the impetus for this article in the New York Times:

Drug Approved. Is Disease Real?

And that, in turn, triggered this response on ChronicBabe (which I really should add to my Links list):

New York Times, fibromyalgia, Lyrica and truth

In case anyone is wondering, I did try Lyrica a few years ago and got only temporary relief from it. But then, I've got multiple ailments and am not a typical fibromyalgia patient, so maybe others will have better luck with it.

Here's what doctors are saying about the article:

Physicians respond to NY Times article on FM
I had thought that with a national rheumatologist organization, the FDA and other groups officially recognizing the existence of fibromyalgia, the cloud of doubt was finally beginning to lift. But the New York Times article just muddied the waters right back up again, and probably did a great deal of damage in terms of the public accepting the reality of the ailment. Gee, thanks.

Uh oh...... 

Today, I got an explanation of benefits from my medical insurance company for my December trip to the Mayo Clinic. There are a couple of items that they aren't covering at all. There aren't any details as to what these items are or why they aren't paying for them.

I had been under the impression that once I reached the yearly maximum, I wouldn't be charged anything above that. But between the excluded items and the stuff I had to do in January instead of December (the deductible resets at the first of the year), I'm gonna owe approximately $4000 more than I was expecting! It's also $4000 more than I have in savings.

I am going to call my medical insurance company first thing on Monday and find out what they are up to. And then I am going to call the Mayo Clinic and see if they have a financial couselor I can talk to. I have never in my life before been in a position of not being able to pay a medical bill, and I don't know what to do.

I am on disability, but because Dan works, we are too "rich" for most assistance. What do lower middle class people do when they get medical bills in excess of 25 percent of their annual income? Suck it up and take out a loan??

Poor Dan is very freaked out about this. He's afraid we'll lose the house. I don't think the situation is that dire, but I do believe that we might not get out from under this debt for years, especially since my LTD benefits have been cut off and I still have ongoing medical expenses to consider.

I am a financially responsible person who wants to do the right thing. But I'm stumped.

Friday, January 25, 2008

Rave of the Day for January 25, 2008: 

Christine, webmistress of But You Don't Look Sick (see Links list), was interviewed for this CNN story. It goes over some do's and don'ts of going to the doctor....

Are you an obnoxious patient?

Not that I would have any idea what they're talking about, oh, no, not me. I've been kicked out of doctor's offices when I tried to cite internet articles, even though they were reputable ones from the National Institutes of Health. But I totally agree about being organized and respectful of a doctor's time, especially when you have complicated health issues.

Still, sometimes I think I have earned an honorary medical degree with I've had to learn about my ailments in order to ensure I get proper treatment. I suppose that would elevate me on the obnoxiousness factor, heh heh.

Thursday, January 24, 2008

Money, so they say, is the root of all evil today..... 

Took the car to the shop today. Needed some major suspension work that I knew about and a water pump that I didn't know about. Spent half of my SSDI check right there.

Then whilst I am getting the car fixed, Dan's at the dentist about some major tooth pain. Yep, you guessed it, now HE needs a root canal! The only saving grace is that it's a new year so we haven't yet maxed out our dental coverage.

Not even a month into 2008, and already I'm gonna nickname it Year of the Debt. I guess when one has a nine year old car and a ten year old car, one must expect to have to replace stuff, but, ack, can't we get a break until after we've figured out the Mayo Clinic bills? But then, I don't suppose there's any particularly convenient time to owe money.

At least I didn't suffer the fate of this poor teenaged kid who ran into the light post across the street from my house this afternoon! Apparently I'm not the only one who noticed how slippery the side streets are. He seemed ok, the cops came and everything, and I tried not to think about what might have happened if he'd kept on sliding and ended up in my yard, maybe hitting the house.

I saw on the news that maybe the feds are gonna send "rebates" to those of us who earn under $75,000 per year? The idea is that we can be coaxed into spending it and jumpstarting the economy. Screw that, I need it for bills!

Had another shitty night last night with no sleep, muscle twitching all over, etc. I hurt sooooo damned bad. Wish I could figure out if it's one of the new meds causing this, or if I caught something (just found out Dan's dad was sick when we were out to dinner with his family, grrrr!), or just being out in below zero weather.

As ET would say, ooooouch.

Rave of the Day for January 24, 2008: 

Too distracted by all the bickering amongst the politicians to decide which one you want to vote for? Answer the questions in this quiz, and you'll be lined up with the candidates whose views come closest to your responses. Link courtesy of Ducky....


Looks like I should be casting my vote for Barack Obama, assuming he's still in the running come election time. We'll see.

Wednesday, January 23, 2008

Rave of the Day for January 23, 2008: 

With all the mud slinging going on amongst the candidates, the follwing funnies suddenly seem a whole lot less mean spirited, heh heh. Dr. Karen sent me this, which I suppose is not for the easily offended.....

Newest Bumper Stickers

1) (On an infant's shirt): Already smarter than Bush

2) 1/20/09: End of an Error

3) That's OK, I Wasn't Using My Civil Liberties Anyway

4) Let's Fix Democracy in This Country First

5) If You Want a Nation Ruled By Religion, Move to Iran

6) Bush. Like a Rock. Only Dumber.

7) You Can't Be Pro-War And Pro-Life At The Same Time

8) If You Can Read This, You're Not Our President

9) Of Course It Hurts: You're Getting Screwed by an Elephant

10) Hey, Bush Supporters: Embarrassed Yet?

11) George Bush: Creating the Terrorists Our Kids Will Have to Fight

14) America: One Nation, Under Surveillance

15) They Call Him "W" So He Can Spell It

16) Which God Do You Kill For?

17) Cheney/Satan '08

18) Jail to the Chief

19) Who Would Jesus Torture?

20) No, Seriously, Why did we Invade Iraq?

21) Bush: God's Way of Proving Intelligent Design is Full of Crap

22) Like Jesus Would Own a Gun and Vote Republican

23) Bad president! No Banana.

24) We Need a President Who's Fluent In At Least One Language

25) We're Making Enemies Faster Than We Can Kill Them

26) Buck Fush

27) Rich Man's War, Poor Man's Blood

28) Is It Vietnam Yet?

29) Bush Doesn't Care About White People, Either

30) Where Are We Going? And Why Are We In This Handbasket?

31) You Elected Him. You Deserve Him.

32) Frodo Failed. Bush Has the Ring.

33) Impeach Cheney First

34) Dubya, Your Dad Shoulda Pulled Out, Too

35) When Bush Took Office, Gas Was $1.46 a gallon

36) The Republican Party: Our Bridge to the 11th Century

As Emily Litella would say: "never mind".... 

I did get some actual sleep last night, so I feel more human today. And I scored a major accomplishment.

The receptionist I talked to yesterday at the rheumatologist's office was pretty rude to me, like she was trying to get rid of me. And I was so brain fogged that I just let it go. But today I felt up to calling the office again to see if I was really out of options.

I got a different receptionist this afternoon, someone really nice. I politely explained that I understood the doctor would be on maternity leave and asked if she would be able to squeeze anybody in after that. She said that, yes, she'd just gotten a cancellation and could make a tentative appointment for me in July!

I don't mind waiting six months; the wait to see one of the other rheumys is eight. My primary care doc has volunteered to handle bloodwork and stuff until then. So if this rheumy ends up being at least adequate, that will be one major problem solved.

On a completely unrelated note: had a brief adventure today on the way to aquacise. It was cold, no more than 5 degrees, and the wind was blowing so hard that it was impossible to tell if snow was actually falling from the sky or just blowing upward from where it had fallen on previous days/weeks. And while the main streets had been plowed (gotta give props to Sioux Falls for their prompt snow removal), the side streets had not, and those were slicker than snot.

So I'm about a block from the house, approach an intersection, and start sliding into it sideways. After I realized I was not gonna hit a nearby parked truck or a curb, I started thinking, hey, this is pretty fun! When the car finally came to stop on a side street I had not intended to use, I just continued along that street as though nothing had happened, no harm done.

Was looking at my desktop recently and realized that I've got over a year's worth of pix on the computer that I've not made copies of. So I'm gonna sort through them and figure out which ones I want to put in an album and get prints made. Between the trip to Florida, Christmas with the in-laws and pix of my new nephews, I've got some excellent shots to choose from.

Too bad a near accident is as close as I can get to actual sledding these days.

Burned out, bummed, beaten down.... 

Rotten night last night. Insomnia despite Ambien. Woke up hourly from 3-6am, was awake from 6:30-8, then finally crashed until 11.

Got up with a headache, violently twitching muscles and just generally feeling as though I had been beaten mercilessly. Could only move in extreme slow motion. Amazed I actually got to my 2pm primary care doctor's appointment on time.

Set up some blood tests that had been requested by Mayo, went over my meds, and talked about the cessation of my benefits by the long term disability insurance company. She said there was very little she could do to help me since my primary disabling problem, severe autoimmune fatigue, is impossible to prove objectively. She's right, of course, but my heart sank hearing it out loud.

She decided I should see a physiatrist as I have not had an objective assessment of my overall physical limitations, just the usual rheumatology and neurology specialty evaluations. I very reluctantly agreed to go. I know it could be very helpful, but I just don't want to add another specialist to my already bewildering list of doctors.

There was a guy she had in mind that she said I would really like, but when we tried to set up an appointment, we found out he doesn't take my insurance. So I'll get a call when the primary care's office has lined someone else up. I'm not trying to be a pessimist, but I hope this route doesn't lead to another dead end.

We talked about the Sioux Falls rheumatologist the guys at Mayo wanted me to see. Primary care said this doc was pretty good. But when I went to make an appointment after I got home, I found out the rheumy is going on indefinite maternity leave and isn't taking any new patients!

This leaves the number of rheumatologists for all of Sioux Falls at three in two offices. I have been to both offices and found their docs to be incompetent when it comes to current knowledge of Sjogren's, and neither office would support disability for a Sjogren's/fibromyalgia patient. So if I went there, I could lose my SSDI (I'm up for review this year) in addition to the LTD.

I am soooo burned out. Burned out on tests, doctors in general (even the nice ones), and definitely burned out on continually having to prove I cannot work. I want so much to get back to having a life, but if I give up the fight for benefits, I will do myself irreparable financial harm.

I think I'm even burned out on being burned out, if that makes any sense. I would welcome a boring little job where I could just go in, do what's expected of me, and come home with a paycheck from time to time. Have some down time on the weekends because I earned it during the week, not because I'm exhausted from some kind of therapy.

Things will get better. They always do. But tonight, my headache is evolving into a migraine, and I don't wanna deal with any more doctor searches.

Monday, January 21, 2008

What I've figured out, what I'm up to (besides being 5 ft. 6) 

Did research on the findings in the Mayo records I have so far. I'm supposed to get copies of the consultation notes and the pulmonary tests done in January, but they haven't arrived yet. I figured I should look up even the minor abnormalities so that in the off chance something progresses, I won't be totally in the dark.

Sinus bradycardia: a sinus rhythm with a resting heart rate of 60 or less. Mine was 47. This can be normal as athletes generally have very low resting heart rates. However, since I'm not an athlete, there is a slight possibility this might be caused by disease, like my hypothyroidism.

The plaques in my brain could be a few different things. The migraines would be the least health-threatening cause. I did some checking around on some message boards, though, and did come across other people with Sjogren's who had similar plaques but not necessarily migraines. So autoimmune disease could be a factor, the worst case scenario maybe being vasculitis (but that's pretty rare)? Most of the info I found on search engines described cardiac disease or Alzheimer's as a cause, but right now I think the chances of that would be pretty remote. Migraines, possibly caused by Sjogren's, would be the most likely explanation in my case.

Postganglionic sympathetic sudomotor impairment, reduced distal leg QSART response: these came up during my autonomic reflex screen, where they look for neuropathy. These show the very beginnings of abnormal sweating ability, which sounds like it should be no big deal, but it's actually an indicator that one's body is having trouble with functions that are supposed to happen automatically. And it's in the area where I'm experiencing the most problem with periodic numbness, so it fits.

Increased elctromyographic needle insertional activity: this was in the same part of the leg where I had the abnormal sweating ability. This might be due to an increased incidence of muscle cramping in that area, not suprising considering these muscles do twitch continually in my sleep, but I thought it was interesting. Something to keep an eye on perhaps to see if it changes over time.

Aortic valve sclerosis: this is calcification in the heart. It is common in people over 65, but not so common in someone younger. It can have an autoimmune cause. There is a 50 percent higher chance of developing significant heart disease where the sclerosis develops into stenosis. The best prevention is maintaining normal blood pressure and normal cholesterol, which I am already doing.

Aortic, mitral, tricuspid valve regurgitation: abnormal leaking of blood through these valves in the heart. Can be caused by autoimmune disease, although that's pretty rare. If it is severe, it can lead to congestive heart failure, but mine is minor, so I will probably be fine.

Side note: noticed that my BMI (body mass index) listed on one of the tests is down to 22.9. This means I am now NORMAL! Yayyyyy! It was only a few years ago I was in the obese category. What a difference 65 pounds makes.

Started the asthma medications the week after I got back from Mayo. The albuterol is great stuff in that it gets rid of that sensation of an elephant sitting on my chest, it works within minutes, and it keeps me from hacking up a lung every time I'm near a cigarette or out in the cold. But it's considered a "rescue" medication, so the only time I'll take it regularly is prior to exercise.

The Advair? Too soon to tell. It makes me cough more, and it increases the tremor in my right hand, to the point where I knocked a full glass of ice water on myself when I was out to lunch with the aquacise ladies. Maybe the side effects will subside over time.

Started the Imuran last week. Potential for side effects is quite high, but as Ducky likes to say, sofa so gouda (so far, so good)! I'm only on a half-dose at the moment and will go up to a full one next week.

But I honestly can't tell yet if the Imuran is actually doing me any GOOD. It hasn't affected the fatigue, at least not enough to keep me from needing 10-12 hours of sleep or to keep me from the ever-popular zonking out on the couch. Maybe it takes a long time to become effective?

Went to an Italian restaurant last night to celebrate my sister-in-law's birthday. It was tricky, but I did manage to figure out something they could make that was safe for me to eat, and I was pleased that they were willing to go off their regular menu for me. I had a small steak and grilled carrots without their usual seasoning, a small salad and a scoop of plain vanilla ice cream for dessert.

Here is an example of why it's a good thing I never had kids. My almost 4 year old niece is helping her mom open presents, and she is asked what's in the gift bag, and she yells out, "DOODY!" My sister-in-law looked absolutely mortified, but I was howling with laughter and couldn't stop!

For the time being, I am done looking things up, but unfortunately, this doesn't mean I'm done doing the doctor thing. Tomorrow, I am going to the primary care physician to set up periodic bloodwork to monitor the effects of the Imuran. I also need to get in to see an opthalmologist because I'm having problems with blurry vision and should make sure it's just normal aging and not something else.

Future plans? Well, as far as writing goes, I have lots of plans for articles for But You Don't Look Sick. I want to do one on preparing for a Mayo Clinic visit, I have a couple of books to review, and there are several products I'd like to review.

I also have an iTunes gift card to spend. I've already made a long list of songs I want, so all I've gotta do is download them. Plus, I'm not quite finished tranferring over songs from my CDs, so I'll resume that soon.

Have not heard a peep from my long-term disability insurance company, and they're wayyyy over their self-imposed 45 day limit for replying to my appeal of their benefit denial. But I'm not gonna do anything until after I've got all my notes from Mayo handy. I'm about 99 percent sure I'm getting a second denial anyway, and I want my second appeal to have some new data.

And at some point, I need to tidy up the command center before I start getting into tax return mode. It always looks like a tornado hit by the time I finish filing. My big dilemma this year will be finding out whether my disability pension is taxable.

My freezing fingers are screaming for me to quit. As they say in the movie "Clueless", I'm outtie.

Saturday, January 19, 2008

Rave of the Day for January 19, 2008: 

Popped onto Fibrohugs (it's on my Links list) Friday and found the following funnies posted by cathi0101. The first one sounds exactly like stuff a person with fibrofog would say, and I could swear our illustrious president has uttered at least one of these....

Huh? - Mixed up Sayings

Cross my legs and hope to die!

If the cows are laying down, the fish aren't biting!

I have a lot of irons in the fire, but I'm holding them close to my chest.

It is kisstomary to cuss the bride.

You hit the nail right on the nose.

That guy would give you the arm off his back.

Go jump off a lake.

The gunman was believed to be armed.

I'm up to my ass in elbows.

I can lead you to horsewater, but I can't make you drink.

You play ball with me, and I'll scratch yours.

It's half of one, six dozen of another.

He's the cream of the corn.

There are too many cooks in the broth.

The short answer is 'Yes'. The long answer is 'No'.

Looks like I've spent the day chasing a wild herring!

We are the glue that keeps things moving.

Fits like a charm! Wait - fits like a shoe?

It just like stealing teeth from a baby.

I can tell you this, they are all sitting 2 inches higher in their seats, because they all just crapped their pants.

You're barking up a dead tree.

That's not his cup of cake.

Put yourself in my pants.

You don't want to shoot yourself in the foot because you might want to take a walk later.

Shut your mouth and eat your dinner.

I love being spontaneous. I just need a little warning.

We ought to make the pie higher.

Golf is a game that is 90% mental and 10% mental.

Being in a hurry is a complete waste of time.

That guy smokes like a fish!

You can't pull the sheep over my eyes!

I wasn't rich like you guys. I didn't eat gold or have a flying pony.

After my C-section, the only thing I was allowed to drink was liquids.

All old people should be shot at birth.

He's as sharp as a new penny.

I know that area of town like the back of my head.

She's like the pot calling the kettle a frying pan.

She used enough scotch tape to feed a third world country.

That really burns my goat!

People are dying like pancakes here.

You shouldn't let people get under your goat.

I'm sweating like a bullet.

It's like six of one and two dozen of the other.

I hate to throw cold water on your bubble.

I just got my car fixed and it's runnin' like a dime.

That really raises the shackles on my neck.

I'm optimistic but my optimistics is on the other side of the teeter-totter.

We gotta get our soup and nuts together.

I'm trying to contain an outbreak, and you're driving the monkey to the airport!

I used to be as sharp as a button.

That'll put the monkey in your court.

It was time to separate the wheat from the baby.

You're only smart on the outside.

I guess you're just AOL.

If we can't lead them with a stick, we are going to have to beat them with a carrot.

Not everything that shines is baloney.

You're opening a complete can of Pandora's worms there.

Monday morning the fan is going to hit the roof.

It sounds like sour milk, and I don't like the smell of it.

I don't want to put all my monkeys in one barrel.

We've got to dig our way out of this puppy.

In the kingdom of the blind, the one-eyed horse is king!

You're a minefield of information.

Looks like he's thrown a wrench in the monkey works.

You don't want to put all your legs under one blanket.

I can't do it in the spur of a hat.

That really burns my craw!

A two-prawn approach is necessary.

He won't last, he's just a flash in the pants.

You gotta walk with your pants on.

Can I pick your ear?

I don't want to shoot myself in the hip.

A little pain never hurt anyone.

Is everyone else in the world a moron, or is it just me?

I can't come in to work because I need to have an autopsy.

I don't feel like the sharpest button on the beach today.

You have to keep all your marbles in the same duck.

We don't want to screw ourselves in the foot.

I feel like I'm beating my head against a dead horse.

The ball is in his camp now.

We need to get our ducks in the fire.

Whatever rubs your boat!

You know I'm just pulling your lamb.

If you fall and break your leg, don't come running to me!

They need to get all their ducks in one sock.

We don't want to go barking up a dead horse.

We're going to come out of this smelling like geniuses!

The ball is squarely on our shoulders.

The best way to learn is from the school of Fort Knox.

Make sure you cross your p's and q's.

Throw that monkey back over the fence.

She really rubs me up the wrong tree.

Well, I'm just busier than a one-armed naked man.

He had all of his ducks in one sock.

I've just got my feet in too many pies right now.

This thing is about to grow legs and take off.

Are you going to call the whole kettle black because of one bad potato?

If we do that we'll open up a whole new wormhole.

Will everyone stop misundermining me!

I'd like to be a fish on the wall at that meeting.

He was slow as Moses.

I am sick and tired of the lack of disrespect towards me!

My arms were knee-deep in mud.

'I see,' said the blind man to the fly.

We need to find a solution, even if it isn't the right one.

Hey, don't eat the messenger!

It's only when this business comes into the foreplay that we should be concerned.

We're going to have to watch that with a fine-tooth comb.

..that's what really separates the wheat from the sheep.

He's not the brightest brick in the basket.

Don't worry; I've got an ace up my hole.

He's not the brightest cookie in the lamp.

You planted the seed, and I ran with it.

I swear on my dog's breakfast!

If there was a rainbow at night, how would you know it was there?

Just because he's our landlord doesn't mean he owns the place.

All old people should be shot at birth.

That's the carrot at the end of the tunnel.

Vision is in the eyes of the beholder.

Eventually, I want it now.

In the last year, you've turned around 150%.

It was a huge incontinence for me.

I was already squeezing the buffalo.

I think we're on the same page here, just different parts of the page.

I think you might have hit the nail on the button.

I'm caught between a rock and a wet spot.

I was thinking about you in the shower this morning and I thought of a name for you.

If you have that, the world is your walrus.

It was jumping up and down like a sieve.

I've got ears like a hawk.

This guy's sharp as a cookie.

I had too many hands in the fire.

He's between a rock and a hotplate.

It depends whether you are drinking from the side of the glass that is half-full or half-empty.

I don't need a compass to tell me which way the wind shines!

It's like the blind talking to the blind!

She's not the brightest tree in the forest.

I need a trash compactor because my garbage is too heavy to carry up the driveway.

Cut the cake a different way and go for the lowest hanging fruit.

Now, I do not want to toot my own wagon.

He's not the brightest cookie in the lamp.

We'd be biting off a new can of worms.

Well, it's no skin off my teeth!

That's just cutting your throat to spite your face.

Remember! There is no 'I' in 'Team Spirit'!

If you can't finish the job on time, that'll really put a wrinkle in your feather.

'Usually' only counts in horseshoes.

I wouldn't trust them with a nine foot pole.

Everything has been peaches and gravy.

You're getting too clever for your own boots!

Then I figured that something was rotten in Denver.

I'll be straight as a doorknob with you.

Open your mouth and shut your ears when I'm talking to you.

He couldn't find his way out of a paper bag if it bit him.

They dropped the apple cart, now it's up to us to get it back on the tracks.

We'll be done by the schedule date, maybe later.

We are going to have to put all our oars in the fire for this project.

That really throws a monkey at the wrench.

She's totally green under the collar.

You don't want me down here breathing down your throats.

I didn't think it would be a good idea to rattle the barrel.

That floor is so clean you could comb your hair off of it.

He is always robbing Peter Paul to pay Mary.

It's good to get a taste of someone else's moccasins!

This is for your FYI.

We definitely don't want to nail ourselves into a corner.

I'm not the brightest bean in the hole.

I want quality, not quantity; but lots of it.

Don't look for a gift in the horse's mouth.

I'm doing this just to break up the mahogany.

We need to iron out our bread and butter.

I think we should go for the whole ball of wood.

Each of you pitched a home run today!

I usually dealt with him using felt-tipped gloves.

It's an exercise in fertility.

Hindsight is 50-50.

You are never going to fail unless you try.

We're scraping the bottom of the iceberg.

Today is like the day Rome was built in. We can't afford to have any fiddlers.

He might be barking at a red herring.

He was smoking like a fish.

He's as deaf as a bat.

We don't want to stick our necks out and get our asses chopped off.

I didn't have two dimes to pee on.

I gave him a real mouthful.

I really took the bull by the hands.

He doesn't know his hole from an ass in the ground.

I can't remember but it's right on the tip of my head!

You can lead a pig to pearls...

Thanksgiving is early this year because the first Thursday fell on a Monday.

The skeleton is there. You just have to sharpen it and put the decorations on the tree.

He would give you the shoes off his back.

That question was so easy I could have answered it blindfolded.

We're going to clean the competition's lunch.

We've baked our cake, now we have to eat it.

I want 24 x 7 availability, 5 days a week.

The phone was ringing off its hinges.

I didn't want to stir the apple cart.

It was so quiet you could hear a needle drop in a haystack.

I don't put my chickens before the horse.

It was time to get the train out of the harbor.

I didn't have many bullets left in the tank.

I was shooting at straws.

I was running on exhaustion fumes.

I was looking for a seed that would get it over the hump.

I didn't want to sit in the hotbox with my fingers in my ears.

It's water under the dam now.

I put the ball in the other shoe.

That took the steam out of my sails.

No point in making a molehill out of an elephant!

You can try, but it's like waiting for toast to boil.

Can you tell me when my past due amount is due?

Eventually the penny will come home to roost.

You are the wind beneath my cheeks.


Top Ten Signs You Know You've Joined A Redneck HMO...

10. Your Viagra prescription includes a Popsicle stick and some duct tape.

9. The only 100% covered expense is embalming.

8. Your Prozac comes in colors and has little "m"s on each pill.

7. Preventive Care Coverage includes "an apple a day".

6. Your primary care physician is wearing the pants you gave to Goodwill last month.

5. The Lone Star Bar and Grill is an approved pharmacy.

4. The only proctologist lists his address as Rotorooter.

3. The tongue depressors taste faintly of Fudgesicles.

2. Directions to the Dr.'s office include "Take a left when you enter the trailer park".

1. The annual breast exam is conducted at Hooter's!


Subject: Resignation

To whom it may concern:

I am hereby officially tendering my resignation as an adult.

* I have decided I would like to accept the responsibilities of a 5 year old again.
* I want to go to McDonald's and think that it's a four star restaurant.
* I want to sail sticks across a fresh mud puddle and make ripples in a pond with rocks.
* I want to think M&Ms are better than money because you can eat them.
* I want to lie under a big oak tree and watch the ants march up its trunk.
* I want to run a lemonade stand with my friends on a hot summer's day.
* I want to think a quarter is worth more than a dollar bill cause it's prettier and weighs more.
* I want to go fishing and care more about catching the minnows along the shore than the big bass in the lake.
* I want to return to a time when life was simple. When all you knew were colors, multiplication tables, and nursery rhymes. When I didn't know what I know now. When all I knew was to be happy because I was blissfully unaware of all the things that should make me worried.
* I want to think the world is fair.
* I want to think that everyone is honest and good. I want to believe that anything is possible.
* I want to be oblivious to the complexities of life and be overly excited by the little things again.
* I don't want my day to consist of computer crashes, mountains of paperwork, depressing news, how to survive more days in the month than there is money in the bank, doctor bills, gossip, illness, and the loss of loved ones.
* I want to believe in the power of smiles, hugs, a kind word, truth, dreams, the imagination, Santa, the Tooth Fairy, a kiss that makes a boo-boo go away, making angels in the snow and that my dad and Superman are the strongest people in the world.

So......here's my checkbook and my car-keys, my credit cards and the bills too, my 401K statements, my stocks & bonds, my collections, my insurance premiums, my job, my house and the payments too, my e-mail address, pager, cell phone, computer, and watch. I am officially resigning from adulthood. And if you want to discuss this with me further, you'll have to catch me first, cause,

"You're it!"

Two, two, two complaints in one.... 

First, I just wanna whine for a bit about the cold. As in -25 wind chill and maybe even colder tomorrow. Tolerating this is a pain in the butt when you have Raynaud's (and probably even when you don't).

As I type this, I am wearing long john tops and bottoms under my pajamas, leg warmers, extra thick chenille socks, high top house shoes, and fingerless gloves that go up to the elbow. And I have my heated seat cushion going. And I'm STILL cold.

On a totally different subject, Dan had a job interview today in a field with a really good future, which went very well. Awesome, right? It was until he found out that the job in question pays $3 an hour less than what he's currently making.

If I were still able to work, I'd tell him to go for it. If I were still getting long-term disability insurance benefits (I was recently cut off), I'd tell him we'd tighten our belts a bit until he'd gotten a raise or two. But with me on SSDI, we can't afford to have Dan making a penny less because we're having trouble paying bills right now as it is.

Soooo not fair. Dan is only earning two-thirds in Sioux Falls what he was making in Denver for the very same work. The pay here is atrocious.

Tax season is coming up, and I can't help but think how rotten it is that in order to deduct medical expenses, they must exceed 7.5 percent of your income. WHY? We should be able to deduct ALL medical expenses, if for no other reason than to allow us to use our refund to pay future medical expenses.

I hate that Dan must miss out on good job opportunties because he has to make enough to support us both. And he can't take anything that doesn't offer good medical insurance. Chronic illness messes up the lives of more than just the people who are actually sick.

How do I console my husband? Tell him, "that's ok, maybe we'll win the lottery"?

My fingernails are purple from the cold. Sigh.

Tuesday, January 15, 2008

Rave of the Day for January 15, 2008: 

The CBS story on SSDI aired last night and tonight. Here is the link to Part 1:

Disabled and Waiting, CBS News Investigation: Backlog in Disability Benefits System Leaves Thousands of Vulnerable Americans Stranded

I will post the link to part 2 if I remember to. Kudos to CBS for having the guts to air the truth.

Monday, January 14, 2008

Rave of the Day for January 14, 2008: 

Greg sent me this, thinking I would find it amusing. I did!

The 10 Worst Powers to Have on Heroes

Have been filling the network TV void with old episodes of "Monk" and "House" and stand up specials from Comedy Central and HBO Comedy. Also have been slowly savoring season 3 of "Lost" on DVD in eager anticipation of the year 4 season opener on January 31st. Have been resisting the temptation to hang out on The Lost Forum (it's on my Links list), but I think I'm too much of a geek to not cave in soon, heh heh.

At least I'm getting plenty of use out of the DVR.

Saturday, January 12, 2008

Rave of the Day for January 12: 

Thought I should pass along this message I got from Linda Fullerton of the Social Security Disability Coalition (the site is on my Links list, and I am a member). And please take the time to tune in Monday and Tuesday night (5:30pm Central) to see the stories.....

Hi Everyone, Many here have heard that CBS News is doing a story on Social Security Disability. Several months ago I contacted them on this issue and the problems here that everyone has been dealing with. They realized the importance of this issue and as a result on Monday & Tuesday, January 14th and 15th they will be doing a TWO night investigative report. I cannot even begin to tell you all how thrilled I am about this. It has taken me 5 years to get this type of coverage for us. One night would have been great, but to be getting two nights of coverage on this issue is incredible, and truly the break we have been waiting for. It will air on the CBS Evening News With Katie Couric 6:30 - 7:00 PM EST time - check your local listings for TV station and air time in your area. My piece will air on Monday night, and ironically that is the 11 year anniversary of my brain surgery, and second chance at life, so this is a very strange time for me. If you cannot watch, I am pretty sure they are going to be having it available on their website as well, so I will send out a follow up e-mail next week with the link and also put a link on our website as well.

Once this story airs it is the perfect time to write ALL your elected officials as this story is going to let the public know what is really happening to all of us. You can contact all your elected officials at:
Congressional E-mail Directory

It is also the perfect time to tell all the media outlets you can (newspapers, TV, radio) about your problems with the Social Security Disability process, the Social Security Disability Reform Petition and the Social Security Disability Coalition, as the focus will now be on this issue, and the chances will be much greater now for other media outlets to want to cover it. You can contact the all media outlets in your area and around the country through Congress.org at:
Find and contact national and local media

Thanks to all of you who are already starting to do this. Please don't stop now - we need to keep after them in a big way because the more coverage we start to see, the more we are likely to get. Also the more that this issue is covered by the media, especially in an election year, the more likely that Congress will be willing to take notice and fix the problems. I hope you all like the story and can share in the joy of this major accomplishment. Hopefully there will be many more to come this year. Thanks to everyone here for your understanding and support. You are an amazing group of people and I hope that one day I can meet you all to thank you in person. I think that is an Oprah show that really needs to happen! Be well!

Sign the Social Security Disability Reform Petition – read the horror stories from all over the nation:
Social Security Disability Reform Petition
Linda Fullerton President/Co-Founder – Social Security Disability Coalition

Thursday, January 10, 2008

Rave of the Day for January 10, 2008: 

Ready for something funny? I am! Courtesy of my aunt....

1. Ever wonder about those people who spend $2.00 apiece on those little bottles of Evian water? Try spelling Evian backwards: NAIVE

2. If 4 out of 5 people SUFFER from diarrhea...does that mean that one enjoys it?

3. There are three religious truths:
A. Jews do not recognize Jesus as the Messiah.
B. Protestants do not recognize the Pope as the leader of the Christian faith.
C. Baptists do not recognize each other in the liquor store or at Hooters!

4. Do infants enjoy infancy as much as adults enjoy adultery?

5. If a pig loses its voice, is it disgruntled?

6. Why do croutons come in airtight packages? Aren't they just stale bread to begin with?

7. Why is a person who plays the piano called a pianist but a person who drives a racecar is not called a racist?

8. Why isn't the number 11 pronounced onety one?

9. If lawyers are disbarred and clergymen defrocked, doesn't it follow that electricians can be delighted, musicians denoted, cowboys deranged, models deposed, tree surgeons debarked, and dry cleaners depressed?

10. If Fed Ex and UPS were to merge, would they call it Fed UP ?

11. Do Lipton Tea employees take coffee breaks?

12. What hair color do they put on the driver's licenses of bald men?

13. I thought about how mothers feed their babies with tiny little spoons and forks, so I wondered what do Chinese mothers use? Toothpicks?

14. Why do they put pictures of criminals up in the Post Office? What are we supposed to do, write to them? Why don't they just put their pictures on the postage stamps so the mailmen can look for them while they deliver the mail?

15. If it's true that we are here to help others, then what exactly are the others here for?

16. You never really learn to swear until you learn to drive.

17. Ever wonder what the speed of lightning would be if it didn't zigzag?

18. If a cow laughed, would milk come out of her nose?

19. Whatever happened to Preparations A through G?

20. As income tax time approaches, did you ever notice: When you put the two words "The" and "IRS" together it spells "THEIRS"? Start the year off right.

Taking a (deeper) breath.... 

I feel better mentally today. I am fortunate that I don't generally become depressed for long periods of time; I tend to have a single day when I am really down, and then I vent and think about what I can do about it, and then things usually seem better the next day (but I know that if this lasts for more than a few weeks to seek therapy).

I did use the albuterol once, and the effect was pretty impressive. My lungs felt bigger! I'd had NO IDEA that the heaviness in my chest, the shortness of breath and chronic cough I'd been experiencing was actually treatable.

Now that I actually know what defines an asthma attack, I've been thinking back to when I might have had the first one, and I believe it was FIVE YEARS AGO! Dan and I were visiting his parents for their anniversary in 2003, and we were helping set up a party for them when I walked past a room where a woman was smoking. I immediately began coughing and could not stop, and it felt like my lungs were on fire for the rest of the day.

I'm on day two of the Advair. It did increase my tremor and make my heart pound a bit on the first dose, but that went away with subsequent doses. I am aware that it contains a steroid, though, and I want to make sure I fully understand the long-term implications for my diabetes when I talk with my primary care doc in a few weeks.

I am going to wait to start the Imuran until next week, so if I have any reaction I'll have some idea which med is the culprit. I'm going to do some research on its effects on Sjogren's syndrome so that I might have more realistic expectations. But I suppose a little hope wouldn't hurt.

Will do my best to have a good life somewhere in between all that maintenance. I just wish the window of opportunity was larger.

Wednesday, January 09, 2008

Having a "I hate my life" moment.... 

I guess this happens to everyone once in awhile: you look at a particular situation and it hits you like an avalanche. And you realize that the situation sucks and that you can't do a damned thing about it. And you wish you were someone else, or at least a luckier version of yourself.

I was researching my new meds, and I started getting really hopeful that maybe, FINALLY, I might be able to rid myself of this monster fatigue. Chronically ill people do this a lot whenever they start a new treatment: they start hoping that this might be THE ONE that gives them back their quality of life, their independence, all the things they lost when they got sick. It's unrealistic, but it happens, however briefly. It's like a poor person who daydreams about winning the lottery and thinking that it would solve all their problems.

I've been saying for awhile that if I could just get rid of the fatigue, I could go back to work. That's what I've really, really wanted to believe. But then I started imagining what my life would actually be like if I were employed again, and I realized something: if the fatigue was the only thing that was gone, I would still have to engage in so much self-care that I wouldn't actually have TIME for a job.

First, there's the pills. I take no less than 13 prescription pills per day (some medications have to be taken more than once a day). And even though I have trimmed down the supplements to the essentials due to budget problems, there are still six calcium/magnesium tablets, one B-complex multi-vitamin, two pharmaceutical grade fish oil capsules, and one probiotic per day. That's a grand total of 23 pills, not counting the meds I take on an as needed basis.

Then there are the non-pill meds: eyedrops, creams, pastes, and now inhalers no less than twice a day. And I still need over the counter eyedrops, mouth products, antacids, sinus sprays, laxatives, topical pain relievers, lotions, etc. I've got more health care products in my house than Walgreens.

The real time consuming stuff is procedural, the biggest culprit being the food. I have to eat gluten free, moderate carb, easy to digest meals every few hours. I also need to rinse my sinuses twice a day, check my glucose levels and be extremely vigilant about keeping my mouth clean with the electric toothbrush, waterpik, floss, mouthwash, etc.

Also, I have to take a great deal of care to avoid repetitive motion injury, trigger points, worsening of neuropathy and edema. I must elevate my feet a certain percentage of the day, keep my computer sessions short, and avoid any prolonged standing, reaching, kneeling, lifting or squatting (more than 30 second of squatting and my feet go numb). Oh, and like the rest of the world, I need adequate sleep and some semblance of exercise.

So how much of my day is left for a JOB? If I hadn't been dumped by my LTD company who claims I am well enough to work, it wouldn't be so much an issue. But I am feeling desperate about the money situation and am falling into the trap of believing that my life would be so much better if I were employed.

I suppose I should more frequently remind myself what I was like during those last few years at the newspaper agency whenever I get too antsy to jump back into the workforce. Besides continually dozing off at my desk, I had those lovely electric jolts of pain from neuropathy, I was making unprecedented errors due to cognitive dysfunction, I had to dash off to the restroom once an hour, my eyes always felt like they had sand in them, my hands were icy and stiff and painful, my feet were usually swollen, I had frequent migraines, I would develop uncontrollable fits of coughing around co-worker's perfume, and I had difficulty walking from the parking garage to my work area. And that was on the days I was well enough to work.

But DAMN, I hate being so high maintenance! This whole business of discovering I have asthma has sent me over the edge. Now I get to carry albuterol around with me all the time along with my water bottle, eyedrops, lip balm, saliva substitute, sunglasses and emergency snack for my diabetes.

When I was healthy, I could decide on the spur of the moment to go take pictures someplace and grab my camera and ID and JUST LEAVE. No muss, no fuss. Now the closest I get to a fun mountain drive is playing my homemade cassettes in the car on the way to aquacise, hoping I won't be too exhausted by the class to do anything when I get home.

I know I need to not jump the gun and just be patient and see what happens with the new treatments. But sheesh, I am soooo burned out on the whole raising my hopes and having them dashed thang. And it doesn't help that if I were to suddenly cure the Sjogren's, I'd still have the fibromyalgia, and if I cured the diabetes, I'd still have the gastroparesis, and so on.

I need a vacation from myself.

Tuesday, January 08, 2008

Diary of a Mayo patient, chapter 2.... 

Sorry for the prolonged absence. I actually got home Friday, but was so wiped out that I slept 15 of the first 24 hours after I left Rochester. I am trying to return to what passes as normal activity for me today but fell asleep for a couple of hours on the couch anyway.

Dan and I left for Rochester around 11am on New Year's Day. No snow falling, but the wind was about 30 miles an hour, so the snow that was already on the ground got whipped up into near white out conditions at times. Thank goodness the sun was out so visibility wasn't further reduced.

When we headed to the shuttle for Mayo Wednesday morning, the wind chill was -45! The impact of that frigid air hitting my lungs was literally breathtaking. I coughed most of the way to Mayo.

First up was the ENT consultation. Talked to him about various things, and he took a peek at my sinuses and throat inside and out. The lymph nodes had gone back down to minor swelling, and I had the usual salivary gland swelling. The sinuses were rather dry, but the inflammation and infection weren't as bad as they sometimes get.

Asked whether I should do sinus cleansing with a neti pot. He said I wouldn't need it if I were healthy, but because I am so dry and I am unable to naturally wash away impurities that I should use a gentle rinse twice a day. He told me to add a spray containing sesame oil to keep things moist so I shouldn't get as many infections and/or nosebleeds. I was warned to spray GENTLY with a mist sprayer, not to use a pump or inhale it sharply as I want to avoid the chance of aspiration into the lungs. My sinuses are so dry that right now I'm catching any little bug that comes my way, so I am willing to give it a shot.

He said I probably won't need another lymph node biopsy unless the swelling becomes dramatic or remains unchanged for more than six weeks or so following an infection. He said that it's common for them to remain swollen whenever I get bronchitis, which has happened three times this year. Each time it has happened, the lymph nodes remained enlarged for about two months.

He told me that the best way to prevent reactive bronchitis is to keep the sinuses hydrated. And stay away from cigarette smoke and people with colds, of course. He added that I should talk to the pulmonologist about the chronic chest congestion and see if I should do anything about that.

We talked about tinnitus for awhile. Mine is particularly nasty, compromising my hearing, and seems to be connected to autoimmune disease. He said that any sort of stress to the body, including noise, headaches, infections, etc. can aggravate tinnitus for as long as three days after a particular trigger.

Next up was the pulmonary consult. I was surprised to discover I needed some more tests. The pulmonary function test was normal or only slightly less than normal in all but one area: the part where you exhale deeply and forcefully. That came out at only 60 percent capacity. Two possible causes in a patient with Sjogren's are asthma or obstruction from heavy mucus plugs.

I got to see the slides from my CAT scan on a computer screen. That was AWESOME, looking at slides like slices of bread in succession like an animation of my innards. Everything there looks good.

So the main question was whether I have asthma or just chronic chest congestion. I was scheduled for a spirometry with methacholine. Basically, they try to give you an asthma attack in a controlled enivronment that they can measure.

I was totally shocked, but I did have a reaction to the methacholine. I got an increased sensation of heaviness in the chest, it was noticeably more difficult to exhale forcefully, and I had to catch my breath between measurements. My results were indicative of mild asthma, so not terribly worrisome, but there was a measurable difference nonetheless.

The next test wasn't until the next morning, so we headed back to the hotel. With no new network programming on tv except reality shows and only one pay channel available (Showtime), we ended up watching stuff that was new to us: "Monk" and "The L Word". Would much rather watch a lesbian soap opera and a detective with OCD than cheesy dance competitions anytime. I did attempt to watch "Bruce Almighty" on the portable DVD player we borrowed, but I dozed off of course.

Thursday, I did another breathing test: exhaled Nitric Oxide. They measure the levels of it in what you breathe out. I didn't quite understand it, but a certain amount of eosonophils or something like that indicates asthma??

Had a fairly long wait between the test and the final consultation with the pulmonologist, so I managed to finally finish my book by Neil Peart of Rush. The view of Rochester from the pulmonary department is pretty cool as it's on the 18th floor. They also have computers in the waiting area; I thought of sneaking in a blog entry but decided my time would be more wisely used researching asthma.

Talked with the pulmonologist Thursday afternoon. He said that my breathing problem could be best characterized as bronchial hyperreactivity rather than typical asthma, but no matter what it's called, the treatment is the same. While asthma is not typically caused by Sjogren's, there is a fairly significant number of Sjogren's patients with bronchial hyperreactivity, so who knows?

I asked how I could suddenly develop asthma as an adult. The pulmonologist replied that it was probably a vicious cycle of extreme dryness in the airway leading to mucus plugs and aggravated by infections, inflammation and reactions to irritants like cigarette smoke and cold air. So the chronic bronchitis was actually more insidious than I ever suspected. Those Sioux Falls docs who blamed my shortness of breath on deconditioning were definitely off base.

The best things I can do at this point are to keep my sinuses hydrated, avoid cigarette smoke and people with active infections who might be contagious, and start using inhalers. I am going to be on Advair for regular use and albuterol for emergencies. As if I wasn't high maintenance enough already.

Since I've never used inhalers except during the pulmonary function tests, a nice lady came in and showed me how they work. She also gave me a whole notebook of materials on asthma. So I've got some studying to do.

Then it was time to return to where I started: the rheumatology department. The basic consensus was that since all these tests failed to reveal anything that would point to a different cause, the Sjogren's syndrome and celiac disease diagnoses are likely correct. The lip biopsy slides from 2003 were reviewed, and Mayo was in complete agreement that they were positive for Sjogren's.

We went over the bloodwork. I am still negative for Sjogren's antibodies, my sed rate is still within range, and ANA is still unremarkable. But in addition to my usual elevated c-reactive protein, I have elevated alpha-1 and alpha-2 globulins, which is new.

Dr. Osborn decided that my illness is progressing and that it is time for me to try a new immuno-suppressant. I am going to try Immuran to start with. If I cannot tolerate it due to digestive issues, I will switch to injectable methotrexate.

He also referred me to a rheumatologist in Sioux Falls that studied at Mayo. She's the only one that my insurance will cover that I hadn't tried yet. Basically, she'll have her work cut out for her as I'll just be going to her for maintenance.

We celebrated the end of our Mayo adventure with a tasty dinner in our hotel room. Rochester has a city-wide delivery service for 28 restaurants, two of which serve Indian food. We split an order of tandoori mixed grill: three varieties of marinated chicken, prawns and lamb baked in a clay oven with grilled veggies and jasmine rice on the side.

After a few more episodes of "The L Word", I tried again to watch a DVD. I maybe got a half hour into "My Big Fat Greek Wedding" before I zonked out. Next thing I know, Dan's telling me the movie's over.

The fatigue didn't improve any on the way home on Friday. Even after drinking a Starbuck's, I drifted in and out of sleep for most of the four hour trip. And once home, two more hours catching zzzzz's on the couch.

I came home with a copy of all of Mayo's December test results, and I'll get January's plus the consultation notes sent to me in a few weeks. From what I can see, some mild abnormalities, but no major smoking gun that I can point to and say, 'AHA! this alone proves I am disabled'. So I suspect I will still be battling my LTD company as they base their definition of disability on the severity of a single condition as opposed to considering that multiple less severe ailments taken as a whole can also be disabling.

For those of you actually interested in technical stuff, a few miscellaneous notes from my test results:
ECG: marked sinus bradycardia
MRI: multiple tiny foci of increased T2 signal in the subcortical and deep white matter of the frontal lobes bilaterally, likely secondary to early small vessel ischemic disease or migrainous disorder. Prominent right PCOM.
AUTONOMIC REFLEX SCREEN: postganglionic sympathetic sudomotor impairment localized to the distal leg. QSART responses normal except distal leg over which it was relatively reduced.
EMG: needle electromyographic examination showed non-specific increased insertional activity in distal leg muscles which may indicate an increased tendency for muscle cramps.
ECHO: aortic valve sclerosis. Aortic, mitral and tricuspid valve regurgitation.

I'll probably look some of this stuff up when I am less brain dead. Basically all it means to me right now is that Mayo says nothing scary is going on. These tests if nothing else will serve as baselines should I develop worsening problems that need monitoring.

For those of you keeping score, here is my new tally of ailments: Sjogren's syndrome, celiac disease, asthma, peripheral neuropathy, Raynaud's phenomenon, gastroparesis, diabetes, hypothyroidism, periodic limb movement disorder, GERD, fibromyalgia, IBS, chronic myofascial pain, adenomyosis. Did I forget anything? The list is too damned long for me to keep track of it all.

After this long strange trip, I have one piece of advice: if you have a systemic disorder that can potentially cause damage to various organs, it is a good idea to have each organ system checked out at least once. If you encounter even one new problem requiring treatment, it is worth it. I wonder how bad my asthma might have gotten had I not stumbled upon it at Mayo?

If I come across anything of interest in subsequent reports (or anything that may only be interesting to me, heh heh), I'll post about it. For now, though, I've got new meds to research and a desk buried in medical paperwork to uncover before I start filing taxes.

I hereby crown myself the queen of annoying multiple ailments. God save the queen.

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