Wednesday, January 31, 2007

Ack! Spoke too soon! 

Mere hours after my last post, I went through the snail mail and found an Explanation of Benefits from my new insurance company for my rheumatologist visit a few weeks ago. Contrary to what I had been led to believe, they are NOT going to cover the x-rays the doc ordered! They are going to ever-so-generously apply the fees to my deductible, which is a whopping five times the amount required by my previous insurance.

I read the supplemental rider to Dan's insurance plan that stated that x-rays and labs ordered with an office visit were subject only to the co-pay, so I thought the insurance guys had made a mistake. I called them today and was told that, no, the charge was correct because the x-rays were done somewhere other than the doc's office, so they were considered an outpatient procedure even though I'd only gone to another floor in the same building (which happens to be a hospital) to have them taken. How f**ked up is that??

I asked the insurance lady, "So you're telling me that unless a doctor puts an x-ray machine in his actual office that I'm subject to paying the entire amount myself?" She confirmed this. I told her that was the most ridiculous rule I'd ever heard and then said a quick thanks and hung up before I resorted to profanity.

This is outrageous. The amount they expect me to pay is more than my mortgage! It's more than triple the amount of that check I found this week.

I guess I should start praying right now that I never need a freakin' MRI.

Tuesday, January 30, 2007

One possible reason to become a neat freak.... 

As I've mentioned before, I'm in the process of emptying all my shoeboxes of receipts and records and putting them into a filing cabinet. Last night, I sorted through my tax deductibles for 2005, tossing any unnecessary papers in the recycling bin. This was no mean feat as I have thousands of dollars' worth of medical receipts each year.

I had dozens of EOBs, or Explanations of Benefits, from our old insurance carrier. I'd gone through these at least twice before: once when I originally received them, and once when tallying up my medical expenses for 2005. But I was still finding pages with no useful info on them, so I read through each one a third time.

Imagine my surprise when I found, of all things, a CHECK at the bottom of one page! It was dated September 29, 2005, and was for an amount large enough to pay for two weeks of groceries plus a tank of gas! It was completely unexpected as I had never before received a check the entire seven years we'd had that insurance company.

My first thought was: how the hell could I have missed this? My second thought was: I hope they'll still cash it! And my third thought was: hey, I ought to do this de-cluttering stuff more often!

Apparently, the check was a refund for several months of overpayment to my shrink. I'd argued with the insurance company that my co-pay was lower than what they were telling me it was, but I got nowhere and eventually gave up. The EOB the check was on was in a thick stack I'd gotten all at once, easy to miss if you're accustomed to getting EOBs every single week like I was there for awhile.

After looking the check over carefully for an expiration date and finding none, I had Dan endorse it and took it to the credit union today. I put it in our savings account, so if it is eventually rejected, we won't accidentally have spent it. If it isn't revoked by this spring, I'll put it toward the cost of a back yard fence.

Well, it seems that, with a few exceptions, 2007 so far turning out to be luckier than 2006. If nothing else, the month of January has been financially more lucrative than expected.

Works for me.

Monday, January 29, 2007

Rave of the Day for January 29, 2007: 

I may have posted a variation of this before, perhaps even multiple times. I can't remember. But I got this most recent version from Joan, and it's still funny....


1. You pull up in your own driveway and use your cell phone to see if anyone is home to help you carry in the groceries.

2. You haven't played solitaire with real cards in years.

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

4. You e-mail the person who works at the desk next to you.

5. Your reason for not staying in touch with friends and family is that they don't have e-mail addresses.

6. You accidentally enter your password on the microwave.

7. Every commercial on television has a web site at the bottom of the screen.

8. Leaving the house without your cell phone, which you didn't have the first 20 or 30 (or 60) years of your life, is now a cause for panic and you turn around to go and get it.

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

11. You're reading this and nodding and laughing.

12. Even worse, you know exactly to whom you are going to forward this message.

13. You are too busy to notice there was no #9 on this list.

14. You actually scrolled back to see that there wasn't a #9 on this list.

AND NOW U R LAUGHING at yourself.

Go on, forward this to your friends. You know you want to!! And Yes, I was laughing and I did scroll back to see that there wasn't a #9

Sunday, January 28, 2007

Random thoughts on a January afternoon.... 

Don't know if I mentioned this before, but a few weeks ago while unpacking, I discovered that I wasn't gonna have enough closet space for all my stuff. We'd been quite spoiled at the house in Denver with its gi-normous master bedroom walk-in closet, and we'd ended up taking up all three bedroom closets in the new house with what had previously fit in the master. So I had to figure out a way to make more room.

I got my answer when perusing a flyer for a local office supply store. They had filing cabinets on sale. So I bought a full-size, legal width four-drawer black cabinet.

I've always engaged in the shoebox method of accounting -- you know, put all the year's receipts in a shoebox and stuff it into a closet? Well, now I can put everything into nice tidy file folders once I clear out each shoebox. It's taking me a lot longer than anticipated, but I've discovered already that once I put something in there, it's wayyy easier to find it again.

I'm also putting into the file cabinet all my medical records, all my warranties/instruction manuals and most of the paperwork that was languishing in the command center. When I finally finish, it should cut down on the clutter drastically. And I've organized the receipt folders so that I only keep the amount required by the IRS, meaning that whenever I need to add a new year's worth of stuff, I'll shred the oldest stuff to make room for more.

My progress on the unpacking kinda came to a standstill when I decided to get my tax stuff together since I was already sorting through that particular paperwork. I now have everything I'm gonna need with the exception of four items I have yet to receive in the mail: forms for my Social Security benefits, Colorado tax refund, the Denver credit union's interest income and a 1099-R from the retirement fund we had to cash out. Once I receive those, I'm gonna contact a local tax preparer and get this shit over with.

One thing that was really a shocker was the discovery of how much we'd had to spend on medical care this year: approximately 20 PERCENT of our income! This includes only one ER visit and one outpatient surgery, and we had insurance coverage the whole time, so the meds and doc visits were all covered. But those damned COBRA payments about killed us off; no wonder our savings ran dry in November!

I've been getting a lot of financial debacles resolved over the past few weeks. Social Security started sending my benefits to my South Dakota account, my long term disability insurance company should follow suit soon, and I FINALLY got my disability pension yesterday, five months late! I also got reimbursed for my medical bills for the fender bender last June, and my second mortgage company returned the amount they had debited from my checking account after I'd already paid them off.

I have decided I'm gonna forego the cell phone thing. After I finally got out of the contract with the last company that doesn't even service Sioux Falls, I looked at the rates for the two companies that do work here and discovered that their lowest prices were either twice as much or a third as much as I was paying! I refuse to shell out that much money for something I would only use in an emergency, so I just hope I never have an emergency, heh heh.

Did two more clothes shopping excursions, the last for 2007: one to Penney's for half-price bras, and one to Target for undies. I know it's weird that I spend about four times as much on the bras as I do the undies, but, hey, I pretty much need the equivalent of a forklift on top, and the ones that are actually comfortable cost money. I found out the undies I normally wear have been phased out in favor of low-rise, which I don't care for, so I gambled and bought some other new styles that I hope will fit.

At one point this week, Dan got tired of my lack of progress on the unpacking and threatened to start putting my stuff away himself, which I would rather didn't happen because he usually can't remember where he puts things. So I stopped filing paperwork for awhile and unpacked the books that go downstairs in the lawyer bookcase. That seemed to satisfy him, and I went back to gathering tax receipts.

There was more I was gonna say, but my hands are tired, and I'm broiling pork chops for lunch, so I'd better get to it.


Saturday, January 27, 2007

I need hair-apy! 

Ok, I am starting to get messages from friends concerned about my welfare, which must mean that I haven't updated this blog in awhile. I apologize for not posting regularly. The transitional "moving in" phase seems to be lasting forever.

At the moment, I am struggling to get my icy fingers into typing mode, even though I am bundled up in a thick all-fleece sweatshirt, extra long sweats and my brand new silver furry socks underneath my boot-style Dearfoams. Dan has generously offered to do the grocery shopping for me as the temperature outdoors is not expected to exceed 20 degrees and I'd probably not be able to track down an electric cart on a Saturday anyway. I'd say, that, overall, things are relatively ok, at least they are for me.

I did begin aquacise on Monday. I had an awful time finding the place as Sioux Falls doesn't seem to believe in putting addresses on their buildings. I also made the mistake of valet parking at the front of the hospital, not knowing that the pool is at the BACK of the building, a distance that far exceeds a city block.

So I arrived for my first class late, out of breath and almost too exhausted to participate. But the instructor was pretty nice about it and let me climb in the warm water and do some stretches. They have two pools for the classes, one designed for regular exercise and the other much warmer for therapy; I chose the hotter one.

I discovered right away that I was younger than anyone else in the class by at least 20 years. And they noticed too, because they thought I was the new instructor! They were quite shocked that someone my age had already been sick for 10 years with as many ailments as I have.

But everyone was quite pleasant, and I vowed to park closer next time so I could get there on time and fully participate. But on Wednesday, I got confused as to where the pool was on the other side of the building and inadvertantly parked across the street from where I needed to be and had to be walked to the pool by an employee because I got hopelessly lost. Yesterday, I finally found the right lot, which is still a long distance from the pool, but it is a much more doable hike than on the previous two days, so I think I'll be able to manage most days.

Sometime this week, Dan decided he wanted to get a haircut. I'd been meaning to fix my most recent disastrous 'do and went with him. We went to one of those, um, discount hair places, which was a mistake.

In the two and a half years I've had short hair, I've only managed to get one haircut that was flattering on me, and it was my massage therapist that cut it, not a salon. But I'm new to Sioux Falls and trying to be on a budget, so I told myself I could not afford to be picky. I am re-thinking that in light of my latest butchering.

I went in there with a photo of what I wanted: basically, very short, spiky and lots of layers. Short enough that I could go totally punk if I had a mind to. Short enough to be extremely low-maintenance the rest of the time.

I should have known I was in trouble when the woman cut about an inch off and pronounced the job done. I had to tell her repeatedly to go shorter, much shorter. After a very long time watching her cut tiny bits off and then stopping to see if I was satisfied yet, I got impatient and decided it would just have to do because she was starting to look panicked, like I was gonna sue her if she snipped one more lock.

The result was fairly disastrous. The sides are quite short and spiky like I'd asked for, but none of the rest matches. The back is too long and cut square and not in layers, and the bangs are longer than anything else, lying flat in contrast to the spiky sides and making me look rather confused and dorky; basically, a bowl haircut with wings.

So I'm gonna wait a few weeks for the sides to grow a bit and then cough up the dough to go someplace a little nicer. There has to be someone in Sioux Falls that can give me a flattering haircut. At least someone who will cut it the way I ask instead of timidly snipping a quarter-inch, one hair at a time.

In other news, my father-in-law had a knee replacement on Tuesday. During the pre-surgery physical and stress testing, it was determined that he'd had a heart attack at some point that no one, including him, knew about. My theory is that it could have happened in his sleep as he has what is probably severe sleep apnea.

And in a truly bizarre incident, one of Dan's junior high school teachers was murdered yesterday morning by her husband, who was brandishing a sword, of all things. The man also injured an exchange student who was living with them and a police officer, whose life was probably saved by his bullet proof vest. The cops had to shoot and kill the man.

All in all, if my biggest personal complaint at the moment is a bad haircut, I'd say life ain't bad.

Saturday, January 20, 2007

Rave of the Day for January 20, 2007: 

Found an inspiring video on a blog I read regularly, With Malice Toward None. While I couldn't figure out how to put a link to the video here (fibrofog strikes again), I did track down the lyrics. Enjoy....

Artist: Danielle Peck
Song: Isn't That Everything
Album: Popular Songs

I might not have a million dollars in the bank
But I've got food on my table and gas in my tank
I might not have designer sheets on a king size bed
But I lay down at night with a roof over my head

Yeah, I've got friends who love me
A big blue sky above me
And your two arms around me baby every night

Isn't that everything
I don't need anything
It's only the simple things I believe
That matter most in life
I'm more than satisfied
All that I have is all I need
Isn't that everything

Now I'm not saying I don't dream from time to time
Every girl I know loves the way a diamond shines
But when the party's over and the glitter starts to fade
It's all about your peace of mind at the end of every day

I know Jesus loves me
Up in that sky above me
I see that morning sun again and feel alive

Isn't that everything
I don't need anything
It's only the simple things I believe
That matter most in life
I'm more than satisfied
All that I have is all I need
Isn't that everything

Yeah, I've got friends who love me
A big blue sky above me
And your two arms around me baby every night
I know Jesus loves me
Up in that sky above me
I see that morning sun again and feel alive

Isn't that everything
I don't need anything
It's only the simple things I believe
That matter most in life
I'm more than satisfied
All that I have is all I need
Isn't that everything

Isn't that everything
Isn't that everything

Back to normal? 

Ok, I looked at what I posted yesterday, and I considered removing it as it was pretty bitter. But then I decided if I deleted it, I wouldn't be providing an accurate depiction of what the downside of chronic illness is like. I wouldn't want to paint an uncharacteristically rosy picture of disability. It IS rough, even for those of us who are generally optimistic or at least not depressed most of the time.

Fortunately, days like yesterday are rare for me. I am usually more realistic and consider myself to be doing well despite all the health-related road blocks. I'm also generally more grateful at the awesome things I do have in my life such as a solid roof over my head, a husband who seems to love me no matter how rotten I am, and a devoted pup. But I suppose everyone grieves their losses once in a while. The difference between mental health and mental illness is the amount of time one spends awash in bitterness and anguish. I am blessed to only occasionally visit the land of the despondent.

After Dan got home last night, he put up with all my ranting and raving and demands for hugs. He sat on the couch with me and watched "The Devil Wears Prada", which we enjoyed. I went to be less morose than I had been.

One thing that helped is that I actually had a smidgen of energy today. Dan took me to Penney's so I could spend the gift cards I got for Christmas. I rarely buy clothes anymore because it completely wipes me out, so this was a big deal. I was hoping to replace some winter sweaters that had disintegrated from old age, but the only warm stuff I could find was made from acrylic to which I am allergic. I did find cotton shirts, but most of them were either low-cut, mid-length sleeved, extremely tight or completely transparent. Now, I looked sensational in some of these, I'll admit, but I don't care to show off my boobs just now; I want to be WARM! I did find one extra large cotton sweater that was only semi-tight, and I bought it even though it had a silly-looking sailor collar. I had better luck buying sweats. They make them in stretchy material now, so they won't cut off the circulation in my legs if they shrink a little. I was very surprised that I can fit in a medium; are the manufacturers sizing pants larger now? Anyway, I grabbed a pair in grey and a pair in black with white and red stripes down the side. The best find, though, was a new purse. I'd been lugging around an ancient microfiber thing with a worn-out velco closure, and every time it tipped over, all the contents would come spilling out. I absolutely LOVE leather but hate the price. Lucky for me, I found a real leather number, small but full of pockets with a padded extra long strap so I can wear it across my body without straining my shoulder. Best of all, it was FORTY PERCENT OFF! Jackpot! And I bought four pair of extra soft fuzzy socks to wear around the house to replace the ones at home that have holes in them. And much to my amazement, I still have a little bit left on one of the gift cards. So I will live to shop another day. I still need new undies....

I have decided to start going to aquacise again on Monday. There is an Arthritis Foundation class in Sioux Falls, and I finally got the required doctor's permission, so I should be good to go if I can find the place. I really need to get back to regular exercise even if it does wipe me out. I figure I'm exhausted 99 percent of the time anyway; I might as well be tired from something that is good for me.

At least I earned my exhaustion today.

Friday, January 19, 2007

I'm mad as hell, and there's nothing I can do about it! 

There will probably be nothing positive said in this post. If you need some feel good vibes right now, please visit another blog. Don't say you weren't warned.

I had to take a detour from unpacking to sort all the 2006 receipts to get ready to file the taxes in a few weeks. I went through all the tax codes to make sure I understood exactly what I could and couldn't deduct, what counted as income and what didn't, what was taxed at what rate, etc. I found all the stuff on medical expenses, moving expenses, mortgage points and interest to be pretty straight forward. And then I got a W2 from my long-term disabiity insurance company and with it, a notice that if I had to repay them with SSDI money in 2006, which I did, that I should alert my tax preparer. Um, I AM the tax preparer!

So I tried to research SSDI in terms of taxes. I know that because Dan works and earns somewhat above minimum wage, 85 percent of the amount of SSDI I was paid in 2006 is taxable. But I didn't understand the formula for what I was paid in 2006 for 2005. And I could find nothing that stated what, if anything, needs to be done about the SSDI money I had to give to the long term disability insurance company. Is it taxable, and does it count as 2005 income, 2006 income, or both, or neither? At this point I realized I'm going to have to hire someone to do the taxes. There are just too many variables this time.

I have always done my own taxes. I took particular pride in this the last few years as there is less and less I am able to do to feel useful. To just dump all the paperwork on someone I don't even know seems to me to be conceding to the damned fibrofog. Cognitive dysfunction has already stolen my ability to work, to write well, to concentrate for long periods, to remember more than a few items at a time. But I was always able to console myself that at least I could handle the finances and taxes with the help of Quicken, TurboTax, a calculator and the IRS website. I read the IRS stuff a few times over last night, and it seemed to be just vague gibberish. I thought maybe I was just too tired to make sense of it. But I makes no more sense today than last night.

And then there's the matter of balancing the new checkbook. Because Dan and I lived apart for half of last year, I had to enter six months of info into Quicken so I would have the year end data to print out for the tax deductible stuff. It took me forever because I kept making mistakes even with the software and the calculator. But what really sucked was the realization that most of the money was spent on ME, for special food and meds and doc visits and supplements and other crap to keep me as healthy as possible. Maybe it would all be worthwhile if it made me healthy enough to work and earn my own keep? But no, all it manages to do is to barely keep me from being bedridden. I get to spend most of each day either in bed or recovering from God knows what on the couch. What the hell am I able to give back to the world? Nothing.

It didn't help when I got the check book balanced and saw that there would be no way we'd be able to pay off the credit cards as I had hoped, even though we had cashed out a retirement plan. Too much money had already gone to the aforementioned necessities. This is a huge disappointment to me as I am trying so hard to get out from under the debt I incurred by becoming disabled.

And then I picked up the mail this afternoon. I got a letter from the alarm company basically negating the agreement we had reached. When we found out we were moving, I was forced to pay off the remainder of a three year contract with the alarm company because they told me they didn't service South Dakota but that I was still obligated to the Denver contract. After we moved, I complained to the Better Business Bureau and asked to released from the contract and repaid. Initially, the alarm company agreed to this and in fact told me they would refund the amount I'd paid on my credit card. But the letter I got today said, no, they were keeping the money and instead would either send me a SELF-INSTALL alarm or would transfer my account to another company. I don't want to put in an alarm myself and then have no local company for service. And I don't want to sign on with another company as I would be stuck with another three year contract and can't really afford the extra expense, and I am sick to death of alarm companies as I've had nothing but bad experiences with them. I just want these assholes to give me my money back, release me from my contract and then leave me the hell alone.

The other fun item I got in the mail was a bill from my Denver rheumatologist. Seems that most of the cost of the bloodwork and x-rays I had in November were NOT covered by our shitty insurance. Our previous insurance paid 90 percent of such costs, but the new company paid maybe 15 percent? This is sooooo not cool considering that asshole rheumatologist I saw a week and a half ago ordered pretty much whole body x-rays and enough bloodwork to require five vials to be taken from me! There goes a whole bunch more money that won't be paying off my credit cards.

And to top everything off, my Reynaud's has been in overdrive because it NEVER warms up here! Seriously, the temperature has not been above freezing for a few weeks now. I know it would behoove my mental health to go out and socialize or something, but my hands and feet burn and ache every time I leave the house, and I can barely walk because my joints and muscles just seize up as soon as that icy air hits them. So I sit at home to stay warm and feel like I might as well be at the North Pole.

It doesn't happen often, but this definitely qualifies as one of those times I am 100 percent fed up with being sick. I hate that I've had to put up with feeling awful 24/7 for 10 entire years now. I hate that I can't work or even do volunteer stuff without making myself sicker. I want to be productive, useful, worthwhile. I want to earn my keep as a human being. I hate just being a money sponge and being unable to give anything back. And if I don't spend the money to maintain my health, I get sicker, and that costs even more money.

And it doesn't just effect me. Dan is stuck at a job he hates because he needs their paltry salary and needs their paltry benefits even more. He has to do most of the housework, all the manual labor, and put up with a whiny wife. If I hadn't gotten sick, I could have tracked down a good paying job as a graphic/web designer/writer in the Tech Center, and we could have kept our nice house as well as having some money in savings and no credit card debt looming over our heads. But I am here, wasting what remains of my intellect and somewhat functional body just sitting around being pissed. I feel like a complete waste of space.

Yeah, I know it could be worse. But it also could be a hell of a lot better.

Tuesday, January 16, 2007

Rave of the Day for January 16, 2007: 

Got a gift card for Barnes and Noble for Christmas. While looking for something else, I came across a semi-autobiography by comedian Paula Poundstone called "There's Nothing in This Book That I Meant to Say". Haven't had time to read much yet because I'm still unpacking, but I did get through part of Chapter 1 while at the optometrist's and found myself laughing out loud. Just had to share this quote:

"I'm an atheist. The good news about atheists is that we have no mandate to convert anyone. So you'll never find me on your doorstep on a Saturday morning with a big smile, saying, 'Just stopped by to tell you there is no word. I brought along this little blank book I was hoping you could take a look at.'"

Oh say, can I see? 

The rheumatologist I saw last week may have been a jerk, but he was right to refer me to an optometrist to get my visual field checked. Because I have to take Plaquenil for the Sjogren's, there is always a small chance it can permanently affect my vision, so I have to be monitored regularly for any changes. I had my appointment with the optometrist today.

While I was there, I also did the usual annual checkup. Luckily, my distance vision is approximately the same as it was a year ago, about 20/40 I think. And my reading ability continues to be excellent.

We talked about how my eyes are doing in terms of the Sjogren's. On the plus side, now that I'm in a more humid climate, I no longer get stray eyelashes and the like stuck to my eyeballs. On the downside, I have more itching and foreign body sensation in my eyes than I did when I lived in Denver.

I was surprised to find out that optometrists can write prescriptions. I thought only opthalmologists could do that. So I was relieved when the doc agreed to refill my Restasis and that I won't have to see a separate doc for that.

The visual field test is rather surreal. While one eye is covered, you look at a yellow beam of light which is completely surrounded by a white background, and you hold a clicker sort of like a computer mouse in your hand. Every time a white dot blinks in your peripheral vision, you press the clicker, and a computer records the result.

Only problem with the test is that the white lights get fainter and flash quicker, and after a certain point, you are no longer certain that you saw them or were just imagining them. This is normal, but it is also very annoying, and when you finish the test, you can swear you still see little blinking spots in the room around you. Luckily, I did just fine on the test and don't need to be checked again for another year.

The doc also examined the retinas and noted that they are thin from when I was extremely near-sighted before my LASIK surgery. I have a small tear in the retina on the right eye. It is unlikely that I will develop any major problems from this, but the doc told me about the symptoms of retinal detachment so that if I experience them, I will know to call her right away.

Other than the little retina thing, my eyes are in excellent shape. My next appointment will be in six months for a standard exam and to make sure the Restasis is still working for me. Glad to have that out of the way.

Driving home was no picnic, though, because my eyes had been dilated for the exam, and they don't usually go back to normal for several hours afterward. Even with sunglasses and the visor down in the car, I thought I was gonna go blind! And my neck is sore from holding my head in place on various machine for a total of an hour and a half or so.

But if I wanted to, I could easily see the dawn's early light. Yay.

Monday, January 15, 2007

Rave of the Day for January 15, 2007: 

Ducky e-mailed me these hilarious YouTube clips. They both show just how embarrassingly uninformed the average American is. The second one is from a Canadian show....

Chasers War on Everything - Americans

Rick Mercer - Talking to Americans

Now, I will freely admit that my knowledge of North and South America is quite shoddy. I was taught about Europe, Asia and Africa in the sixth grade and then was to learn about North and South America in the seventh grade, but my family moved to a new district when I completed sixth grade. The new district taught North and South America in the sixth grade and Europe, Asia and Africa in the seventh, so I covered Europe, Asia and Africa twice, but NEVER studied North or South America! Even so, I knew that Toronto is NOT the capital of Canada (even before you told me, Ducky). And I know who Fidel Castro is.

"Don't want to be an American idiot....."
--Green Day

Sunday, January 14, 2007

At long last, word is getting out! 

For some reason, many people had never heard of celiac disease, or the few that had considered it rare, even though the estimates of its prevalance are 1 in every 133 people in the US. Right now, there are approximately 3 million people in the US known to have celiac disease, which makes it more common than many other autoimmune disorders. So why no press coverage?

It seems the tide may be turning. My primary care doc has celiac disease, and she told me she keeps an eye out for the symptoms in her patients. And today, this article appeared in Sioux Falls' Argus Leader:

Food miseries

I was most interested in the sidebar which mentions that there is a support group here. Perhaps I'll contact them.

It's nice to feel a bit less like a freak of nature.

Saturday, January 13, 2007

Too close for comfort! 

South Dakota has one of the lowest crime rates in the US, but I guess that doesn't mean crime-free. I'm on lots of meds, and my new insurance doesn't allow for mail order, so I spend a lot of time at a local Walgreens. In fact, I was just there Thursday. So imagine my dismay when I saw this article on the front page of the local newspaper:

Would-be robber gets tied up at Walgreens

At least they caught the son of a bitch. And I guess I should be grateful I can't tolerate narcotics so I won't have to fight off thieves after getting a prescription filled.


Friday, January 12, 2007

Awwww, how sweet! 

Thought I'd post something a little more positive just to show that not all is gloom and doom in my little frozen corner of the world....

Last night, Dan and I were watching the end of "My Name Is Earl" when the doorbell rang. After we exchanged puzzled glances and relegated Chip D. Dog to his kennel, Dan answered the door to find two strangers on the porch, one bearing a plate of cookies.

They introduced themselves as our neighbors across the street, although I'm not too clear on which street because our house faces a Y-shaped intersection. We ushered them inside. They were a young married couple, both having graduated from college within the past year or so and both of them from different parts of Iowa.

I never lived anyplace before where neighbors actually came by to welcome you. When I was in college in small-town Kansas, everyone knew everyone else within a few days, so no introductions were necessary. And in Denver, people weren't rude, but you generally struck up conversations with the neighbors when you were both out shoveling snow or doing yardwork or something.

And the cookies were a very sweet gesture, even though I can't eat them because of celiac disease. I am enjoying the fact that Dan is enjoying them. I only very rarely bake because I simply don't have the energy.

Anyway, the wife works for the local Fox tv station, which I find pretty interesting since I used to have mass media jobs. And while I can't remember what the husband does for a living, I was most amused to find out he was a Cubs fan as I'm a Rockies fan, another baseball team that never wins, heh heh. They've only been in their house since August.

They told us that many of the other neighbors bought their houses new, which means they moved in 30 years ago. That's fine with me because it's very quiet here. And it's not so bad to be neither the youngest or the oldest person in the neighborhood.

Then they had to go because "Grey's Anatomy" was coming on and we ladies couldn't miss the new episode, heh heh. The guys just laughed and said they'd be on their computers at home until the show was over. How funny.

I'm still unpacking, still resting between bouts of unpacking, still adjusting to the land of below-zero wind chill.

At least it's easier to adjust when the neighbors are nice.

Thursday, January 11, 2007

Rave of the Day for January 11, 2007: 

This little tidbit was sent to me by Ducky. The author does have a military background, and he was sheriff in nearby Sioux City for 28 years....

The Danger of Belligerence

I think the man makes an excellent analaogy.

Tuesday, January 09, 2007

Bad rheumy! 

My new insurance only covers two rheumatologists in Sioux Falls. I looked them up and discovered they were both board certified, so I figured it didn't matter which one I picked since they were in the same office anyway. Now I think I made a mistake.

The first thing the new doc asked me yesterday was why I moved from Colorado to South Dakota. I replied that it was a financial decision, that we could no longer afford to live in Denver since I'd gone on SSDI. His reply was, "What's SSDI?"

I explained that SSDI stood for Social Security Disability Insurance. He claimed he'd never heard of it. Then he said, "How did you get approved for disability for Sjogren's? That isn't disabling!"

He commented that he'd never heard of anyone with Sjogren's who was disabled. I told him that in the case of someone like me with multiple medical conditions including fibromyalgia, the sum total of them could be considered disabling, and that my former doctors agreed on this. I added that the Social Security Blue Book was going to be listing Sjogren's syndrome as a disabling condition very soon. He was amazed.

We went on to discuss my medications. I told him that ever since the new insurance company refused to cover Evoxac and had me switch to pilocarpine, I'd been sweating and drooling excessively from the new med (rather embarrassing in public), and I wanted to know if he could write a letter to the insurance company asking if I could go back to Evoxac, which had no side effects. He said that sweating and drooling were no big deal and that I could either put up with it or pay full price out of my own pocket (over $300 a month) for the Evoxac.

He then looked at my list of supplements and told me to stop taking them. He didn't ask why I took them, whether my former docs approved of them (they did) or whether they helped. I asked why I should stop them if they helped me, and his reply was that it would make my life simpler.

This man also decided, despite a wealth of medical records from two reputable rheumys stating otherwise, that the arthritis in my spine, knees, hands and feet could not be from Sjogren's and must be osteoarthritis from age. I'm only 42; how could I have that much age-related arthritis when I was perfectly fine 10 years ago? He also kept changing the subject whenever I mentioned the fibromyalgia complicating the joint problems from Sjogren's.

He then proceeded to do an hour-long physical exam, which I know was necessary, but he seemed skeptical when I told him how much it hurt. Um, wouldn't most people with fibromyalgia yell when smacked repeatedly on the back with a mallet?? It's a pain amplification disorder, for God's sake! He seemed incredibly impressed with my range of motion even though I told him that I did daily stretching and weekly aquacise; I think maybe he believed someone with fibromyalgia would have to have limited range of motion?

To his credit, he was thorough and sent me out to have five vials of blood drawn and a full set of x-rays. By the time everything was finished, I'd been there for FOUR HOURS! Thank goodness the drive home was less than 15 minutes.

I am quite concerned about having this guy for a rheumatologist. I am due for a continuing disabiity review next year, and I don't believe his views would be at all supportive. I am shocked at his disregard for the opinions of my two prior rheumatologists, both of whom were also board certified and one of whom is quite famous for his research on Sjogren's syndrome.

The only other choice I can afford is to go to his partner. Would he have the same biases being in the same office? There may be other rheumatologists in town, but my insurance won't cover them.

I don't know what to do. I feel as if seven years of progress treating my fibromyalgia and Sjogren's has been undermined. I don't expect miracles; I just want a doc who knows that sometimes fibromyalgia and Sjogren's are disabling, particularly if a person has both. Any idiot could go to the National Institutes of Health website or something equally reputable and read about Sjogren's syndrome causing irreversible liver damage, kidney damage, non-Hodgkins lymphoma and vasculitis. Wouldn't those be considered disabling? And books on Sjogren's syndrome are available in regular shops like Barnes and Noble. One of those books, which I have packed away in a box somewhere in this house, contains articles written by my former doc.

I am quite sore from yesterday's exam, and of course the exhaustion is awful too. I had thought I was in a flare before the appointment, but I'm definitely worse now. Yuck.

And I'm depressed. I can't help it.


Sunday, January 07, 2007

Happy 2007! 

Copying more medical records, this time before my appointment with a new rheumatologist tomorrow. I have seven YEARS' worth of stuff to copy from two previous rheumatolgists. I also requested that both former docs send my x-rays to the new guy, but with the holidays, repeated snowstorms in Denver and such, I don't know if they have been received or not.

Shortly after my last post, Dan's sister called and asked us to come by to celebrate New Year's Eve with her and the rest of Dan's family. I really didn't want to go because I felt absolutely horrible, but Dan promised we'd only stay for a little while, so I agreed. It's about a half hour drive out to his sister's house.

After we got there, they wanted to play Scattergories (?), which I'd never done before. It was fun, but I tired easily and got worse with every round we played. By 9pm, I was pretty much done in and needed to go home.

Once we got home, I had my usual scrambled egg and cream of rice, and then Dan and I attempted to watch "A Prairie Home Companion". We both fell asleep at various points in the movie, but I woke Dan up about 10 minutes before midnight and tuned in one of the countdown shows. What I didn't know was that it was not tape delayed like they do in Denver, so it was already after midnight on the show, and we missed the "Happy New Year" part, but we could see a hint of the fireworks in downtown Sioux Falls, so we contented ourselves with that.

On New Year's Day, I felt even worse, so I kept a low profile for the most part. Dan's family wanted us to go out to his sister's again, but I just couldn't. I honestly can't remember exactly what it was I did all day.

Tuesday, I had my appointment with the new primary care doc. Fortunately, she was nice, and she was willing to take on my complicated case and prescribe the medication not handled by the rheumatologist, the opthalmologist or the dentist. That way, I don't have to go out and find eight specialists like I had in Denver, which is quite a relief as I am at the maintenance stage right now for treatments and tests.

One thing she did confirm for me is that I have Reynaud's. I had a toenail that had turned purple (which she said was probably a bruise under the nail), and in the course of looking at it, she noticed that despite the winter boots and thermal socks I'd been wearing, my feet were completely white and ice cold. She said this is pretty common amongst people with multiple autoimmune diseases.

Wednesday, I went downtown to get South Dakota license plates and a handicapped placard since the primary care doc had filled out the form for one the day before. Unfortunately, I found out only after entirely too much walking around and standing in a very long line that I couldn't use my previous registration to get the new one (even though a sign on their wall said I could), that I would have to go back home and find the original title! When I did this and came back to the courthouse, the line was twice as long, but I cheered up considerably when I found out that there was no charge for the handicapped placard, that I was allowed one placard for each of our cars, AND that the cost for the license plates was approximately one-sixth of what I'd had to pay in Denver!

On the way home on Wednesday, I dropped off six of the prescriptions the new primary doc had written. I had nine total, but it was too soon to fill three of them. Unfortunately, the pharmacy was out of my thyroid meds, and my insurance wouldn't cover the omaprazole because I had exceeded its 90 day limit for it, despite the letter my gastroenterologist in Denver had written stating that I had a chronic condition warranting continuous use.

Thursday, I had to run some errands such as depositing Dan's paycheck and a refund we'd gotten for our escrow on the previous house. I also went to Kohl's to exchange some pajama bottoms I'd gotten for a present because they were too large for me. This ended up being a much more arduous process than I'd anticipated because it was quite a hike from the front of the store to the back where the nightwear was.

Then on Friday, I stayed home and attempted some unpacking. As usual, I didn't get nearly as much done as I would have liked before the back spasms and horrible exhaustion sidelined me. But I did get the master bedroom mostly done except for some stuff that goes on the walls and finding the rest of my jewelry.

Yesterday, Dan took Chip to a groomer while I tried to organize the basement a little because Dan had invited his family over to look at the house (I would have preferred he'd waited until we'd finished unpacking). Dan moved some boxes around for me into a more orderly fashion, but there was no time for me to do much more than to unpack some of the stuff that went into the command center. Everyone came by about 6:30 to take the grand tour; Chip had a fit barking at our niece, but he eventually calmed down, and everyone seemed to like the house ok.

Well, there's a lot more I'd like to go into, but my hands are killing me, and I still need to get some other stuff done on the computer (like putting six months' worth of checking account info into Quicken!), so I'll stop here.

But in case I haven't said it before, good riddance, 2006!

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