Tuesday, August 30, 2005

"Rock Star" back with a vengeance.... 

This week's performance show was a vast improvement over last week's. With only six contestants left, the competition is getting fierce. And no one did a poor job tonight.

Ty did an admirable version of "You Can't Always Get What You Want" by the Rolling Stones. I've only seen him have one sub-standard performance, and it wasn't tonight. But maybe he sings a little too well for a rock band??

J.D. stuck to safe and predictable, covering "Suspicious Minds" by Elvis Presley. I have to admit it was pretty good. But he hasn't taken the risks that the others have, and he's got such an ego that I could see him insisting that band name be changed to "J.D. Fortune and INXS". I really hope this is the week he is asked to leave. He's the only remaining contestant that I don't like.

Marty went out on a limb and tried Pink Floyd's "Wish You Were Here". No screaming or theatrics on this one, just singing sincerely with a guitar. And he sang it amazingly well, better than anything he's done so far. I really do like Marty, but I don't think he and INXS are going in the same musical direction.

Jordis let me down so much last week that I didn't have high expectations of her this week. She picked John Lennon's "Imagine", a beautiful song than can easily be ruined with theatrics or poor singing. But unlike last week, she was natural, smiling and confident again and sang it so sweetly that she completely redeemed herself. Whew.

Mig cranked up the enthusiasm and belted out a wicked version of "Live and Let Die". He has great presence onstage and certainly loves to sing, and didn't hold anything back. I think he is the best choice of the men to front INXS.

Suzie, former queen of the bottom three, picked the formidable "Bohemian Rhapsody" by Queen. Her perfomances so far have mostly been good, but nothing had really knocked me off my feet yet. Until tonight. OMG, it was amazing! She had versatility, stage presence, and she blew all the other performers away. Finally did something that showed she had a range, and she did it so confidently that I've decided she is better than Jordis.

Tomorrow night, the three with the fewest votes have to compete to stay on. The early voting results show them to be J.D., Marty and Ty, but the early results have changed every week, so the other three aren't necessarily safe either. Whatever happens, J.D. has gotta go!

Monday, August 29, 2005

Here will be heard a discouraging word.... 

Yeah, I know what I posted yesterday. I read it, and it's not helping. Sometimes positive thoughts just don't seem to do the job in cheering me up.

I think part of the reason is the continued decline in my physical capability. Yesterday, I tried to fertilize the yard, something I was able to do just three months ago, but this time, I couldn't finish the job and had to ask my husband to bail me out. And my fatigue is significant enough to make me require a nap after just having a conversation with a friend.

But it's not all simple cause and effect. I'm also having sudden bursts of sadness that seem to come out of nowhere and aren't really related to anything specific that I can think of. Good ol' chemical imbalance, I suspect.

Well, I can't take anti-depressants because I can't tolerate them, and I'm already going to a shrink once a week, so I don't know what else to do with myself. I guess I just have to keep pluggin' away and let these downer moods wear themselves out.

But I'm soooooo tired emotionally.

Bitterness and blessings.... 

I guess I'll start with what's making me bitter tonight so as to get it out of the way.

Realized today that I have declined physically in just the past three months. One of the chores I have always handled was fertilizing the lawn since Dan has to mow it (I can't push the lawnmower). I fertilized the front lawn in May with no problems except for a bit of extra fatigue after. But today, I had trouble pushing the lightweight spreader through the grass and had to stop several times to rest. And steering it hurt my hands. When I finished, I had some fertilizer left over, so I tried to pick up the spreader to pour the excess back in the bag. But my arms gave out, I dropped the spreader and spilled fertilizer all over the driveway. I also got short of breath and had to go in the house and ask Dan to help me. He had to finish emptying the spreader and rinse it out. I've been exhausted and weak and sore the rest of the evening....this simple chore just sucked the life out of me. I hate when I get worse without even realizing it.

Now that I'm done with ranting, I want to spend some time reflecting on what is right and good in my life. I realized that I've been mentioning how blessed I am in e-mails here and there, but I haven't really blogged about it lately. I don't want to whine 100 percent of the time (although you might not be able to tell from certain posts lately).

I do have surprising good fortune despite the health setbacks. I've never lost my home to a natural disaster, never been a victim of a break-in or had my car stolen, never had to live on the street or in a shelter. I've never gone hungry. I have only been hospitalized five times, only one of those times since the age of 18. I have not broken any bones except my big toes. I've never had pneumonia. I have better than average bone mass for my age. Despite my cognitive dysfunction, I am still reasonably literate and am still able to express myself in some fashion. I have never lost anyone I'm close to due to murder. I know what it is like to be comfortable financially. I have gotten to own a home. I live in a diverse neighborhood that happens to have the lowest crime rate in my hometown. I have been to Las Vegas three times and have never come home with less money in my pocket than I left home with. I have been to 35 US states including Hawaii. I was able to get two college degrees. I belong to a church that accepts me and my eccentric beliefs. I have never been in jail or been arrested. I've never been addicted to anything other than food. I am seldom bored because I am easily entertained. I swam with a sea turtle while snorkeling and have seen dolphins in the wild. I live in the most beautiful state in the US except maybe Hawaii. I do not have cancer or anything immediately life-threatening, and my heart, kidneys and liver are all sound. I have 20/15 vision. My sense of humor is almost always intact no matter what happens. I have seen several famous comedians in comedy clubs. I can still hear well enough to enjoy music. I have been to over 30 concerts and have seen everyone from Stevie Ray Vaughan to the Beach Boys to Don MacLean to Janet Jackson. I look and act younger than I really am. I got to work for awhile in an industry that I enjoyed, radio, and got to be funny on the air, write and record commercials, and meet interesting and famous people. I have good medical insurance.

I am particularly blessed, though, by the people in my life. I have a devoted, loving husband who spoils me. I have a very special pup who comforts me when I cry (I know, he's not a person, but I'm still blessed to have him in my life). I have friends all over the world, all ages and backgrounds. I have friends I have known for a few months and friends I've known for a few decades. I get way more support than most people with chronic illness can ever hope for. Thanks to the wonders of e-mail, I can communicate with these friends anytime I wish. Through my church, I have access to open-minded seekers of peace like myself, even people with different religious affiliations who participate in interfaith ceremonies. I am prayed for every single day, even though some doing the praying have never met me in person. It boggles my mind and makes me very humble to know that someone somewhere is thinking of me each day. I have good doctors....a few of them are even great. And I even seem to have a rapport with strangers....I get smiles from people in a town where no eye contact is the norm. People will see me in a room full of strangers and decide to start a conversation with me. I have no idea why I seem to be more approachable, but I don't mind. I meet interesting people all the time, in waiting rooms, in line for something, in stores, at parties. And I have lots of family within 50 miles of me.

I have completely drained my brain writing this, but it was worth it just to remind myself how good I really do have it. Next time I get too whiny, someone remind me of this post, ok?

Sunday, August 28, 2005

Flair for flares..... 

One of the things I talked with my primary care doc about this week was how half the medical profession and most insurance companies don't have a clue when it comes to fibromyalgia secondary to autoimmune disease. I've been thinking about it and realize there may be some regular readers of this blog who only know fibromyalgia from what little has been mentioned about it in the media, and a lot of those stories and articles are misleading. So I'll do my best to describe what this illness is like from the viewpoint of someone who has it, and in particular explain that mysterious phenomenon called a flare.

Fibromyalgia from what I have been able to determine is a disorder of the neurotransmitters in the brain. It's like trying to drive a car with a short in the wires.....you might still be able to drive, but what exactly will happen during the drive is highly unpredictable. A person with mild fibromyalgia and no co-existing illness might have occasional unrefreshing sleep, occasional mild pain after exertion, and otherwise feel fine. Someone with severe fibromyalgia, on the other hand, might be in such agony that they cannot be touched, so fatigued that they are bedridden, and may suffer from a variety of symptoms such as blood pressure irregularities, allodynia, multiple chemical sensitivities, chronic migraines, sleep disorders and vertigo to name a few. And if you think severe fibromyalgia sounds complicated, try having it secondary to other diseases such as rheumatoid arthritis, lupus, MS or other autoimmune dysfunction.

I have fibromyalgia secondary to Sjogren's syndrome. Basically, it's like taking my Sjogren's symptoms and amplifying them to the power of ten. So if Sjogren's is causing pain and stiffness in, say, my knees, the pain is way out of proportion to the cause of the problem, and not only that, the pain will spread to areas not affected by Sjogren's. I suspect the severe autoimmune fatigue I experience is also being amplified by the fibro. I picture the pain signals in my body running around crazily with megaphones like Ty Pennington on "Extreme Makeover: Home Edition".

I have a progressive form of Sjogren's and can exacerbate my condition by doing too much or not taking proper care of myself. An exacerbation can be permanent, or I may improve but not go completely back to the state of health I was in prior to the exacerbation. I probably won't kill myself by overdoing it, but I certainly run the risk of becoming bedridden, so I do have to take this illness seriously whether I want to or not.

Fibromyalgia in itself is not a degenerative disease, but it does feature flares. A flare occurs when I tax my body beyond its comfort level and it responds with an uncontrolled increase in pain, fatigue and other symptoms. While not potentially permanent like a Sjogren's exacerbation, it feels horrible enough to seem endless. It's ironic that while Sjogren's is the more serious of the two, it's the fibromyalgia that is the most painful.

Here's an example of how easily a flare can happen. Yesterday, Dan told me that a friend of ours would be coming by so that he could go play tennis. I realized to my horror that the house had not been dusted since April. Knowing that heavy cleaning with the furniture polish would land me on my tuckus, I opted instead to run the feather duster around the living room to make it a little more presentable. I no sooner cleaned a cobweb off the celing fan when I developed back spasms. I dusted a few more items and then took a break. I sorted some papers and magazines for a couple of hours sitting on the couch. Then I went back to dusting the living room. While doing so, the dust in the air made me cough, which made the muscles in my chest hurt. And then I began to sneeze, which gave me neck spasms. Oh, and my hands hurt from grasping the feather duster and picking things up to dust them. By bedtime two hours later, the pain had spread all the way down both legs and from the hands all the way up the arms to the shoulders. Basically, my entire body was screaming. If I had gone to bed without doing something for the pain, it would have lasted into today and possibly more days before fading away. I had to take my emergency pain medication in order to go to sleep. Honestly, if the average person had hurt like this, they'd be in the emergency room demanding morphine. Today, I am still a bit sore, and my muscles are twitchy, but I have for the most part managed to avoid a lengthy flare thanks to that medication.

Unfortunately, it seems to take less and less lately to cause a flare, and sometimes, I don't even realize I'm overdoing it until the next day when I can't move, and then the flare has set in, and pain medicine won't stop it. And then sometimes I get so frustrated with the limits on my life that I just say to hell with the consequences and pay for it later. I must admit I'm more likely to overdo it having fun than overdo it with tasks I don't enjoy. That's because I hurt every single day of my life, and I tolerate the pain much more easily when it's the result of having a good time.

I get asked from time to time what fibromyalgia pain feels like. I have two analogies for this because most people can relate to one or the other. One is to think of a migraine and imagine that migraine pain from head to toe. This is only helpful for people who have had migraines of course. The other analogy is to imagine a horrible case of the flu, the kind that causes deep bodywide aching, and imagine that flu never going away.

One could say I have a flair for flares.

Thursday, August 25, 2005

Rollin', rollin', rollin'..... 

Went to my primary care doc this morning for my annual checkup. We talked about how my mobility has declined in the past six months (due to Sjogren's plus fibro) and how I've had to give up most shopping, going to museums or anyplace that requires more than a brief walk. We agreed that it's time for me to acquire a foldup wheelchair so I can have more excursions outside the house.

I was nervous that the doc would think I was giving up on trying to stay physically active. I still do exercise, but it has to be non-impact. To my surprise, though, my doc understood and said that it becomes a matter of quality of life if you can no longer walk far enough to do things outside the house that you enjoy and an occasional ride in a wheelchair will give you more freedom.

So she's looking into how best to run this through my insurance. I have mixed feelings: sad that I need a wheelchair but excited that I might get to the zoo or botanic gardens again. My husband will have to push the wheelchair as my hands are too messed up to do it myself, but he doesn't mind because we'll be able to do more things together this way.

So at least that's one thing addressed. Another thing I'm doing is continuing to acquire medical records (I've decided I don't trust Social Security to do this properly); I've contacted three docs so far and will be working on several more in the weeks to come. I'm also thinking of seeing if at least one of my former co-workers would agree to do affidavits to back up the one Dan submitted.

I never expected not working could take up so much time.

Wednesday, August 24, 2005

And the microphone went "thud"..... 

Weird week on "Rock Star: INXS". First of all, the contestants were asked to write their own songs, but they were only given hours, not days, to do it. Then, only two of them were allowed to use their songs during the performance portion, and the other five were to chose from a list of famous songs. This produced unexpected results.

Suzie did "Start Me Up" by the Rolling Stones, a nice strong growling version of it. I knew when I heard it that she wasn't gonna be in any bottom three ranking this week. And I was right.

J. D. played it safe and performed a decent version of "Cold As Ice" by Foreigner. It was the best I've seen him do, and as much as I dislike him, I had to admit that it was fair that he didn't make the bottom three this week. But I would like to see him booted off soon because I just can't see him being a permanent part of the band.

Deanna did her original song, which wasn't actually entirely hers because Ty helped her write it. She has a powerful voice, but I couldn't understand what lyrics she was singing.

Ty did a rollicking version of "Proud Mary". Again, I thought he sang better than anyone else, and I was shocked to see him in the bottom three. But he once again redeemed himself with an INXS song tonight and got to stay.

Mig was the other contestant doing an original song, and I was impressed because he didn't have any help on his. What's more, the lyrics were strong, the tune showcased his voice, and he looked like he belonged on that stage. He still has the makings of a winner in my book.

Marty chose "I Alone" by Live. Unfortunately, the fact that he doesn't have the best voice was particularly obvious in this song, much more so than in any previous. He certainly has the rock star vibe on the stage, but he was completely out-sung this week. So it was painful to see him in the bottom three, but I couldn't argue that he didn't belong there. He did, however, more than make up for Tuesday night's mis-step by nailing an INXS song tonight and will live to see another week on the show.

Jordis decided to do Aerosmith's "Dream On", which I had thought would suit her. But as soon as she opened her mouth, something seemed terribly wrong. She was nervous and shaky, not at all like the Jordis of the previous weeks. And then the unthinkable happened.....she couldn't hit the high notes! This hideous screech came out of her like a slaughtered pig! I like Jordis a lot, but I felt like this was deserving of the bottom three. The rest of the viewing audience didn't agree, though, which I found curious. Instead, they chose Deanna. She did do a competant job on the INXS song tonight, but she was competing against Marty and Ty to stay, and the band had to pick someone to leave, so she got the boot. Believe it or not, instead of being relieved, four of the six remaining contestants were in tears. I have to admit to being kinda bummed myself.

"You make a grown man cry." -- the Rolling Stones

Tuesday, August 23, 2005

Progress and setbacks..... 

Did start writing a review last night for But You Don't Look Sick. I was doing really well, too, so much so that I hated stopping just because it was my bedtime. And the way I feel tonight, I wish I would have finished it last night because I'm back in zombie mode again.

Had nightmares most of the night again, some involving my ex. Ack. So I wasn't well-rested when I got up and actually felt much worse today than yesterday. I feel very weak and out of it, like Dracula drained me of my blood while I attempted to sleep. Also, believe it or not, my hamstrings STILL hurt from puling weeds on Saturday. The muscles feel like bricks under the skin. And naturally, since I've been foggy-headed all day, I had another cooking mishap. I'm getting really tired of eating slimy little bits of what used to be rice pasta just because I keep forgetting to set a timer while I'm cooking.

I also forgot that I'd planned to get up early and call the union president today. Luckily, when I did remember, I was still able to reach him. We talked about the letter I'd gotten terminating my employment and whether our contract prohibited that sort of action. The president agrees with me that the past practice of allowing people on disability to retain their priority with the company should prevail, and he wants to file a grievance with the labor board about it. It's really more than a matter of whether I'm going to be able to come back right away; if we don't grieve my case, what happens if one of my co-workers gets in an accident or something and needs to be out a bit longer than six months? They would not be allowed to come back because me not fighting my termination will have set a precedent. I know grievances can take years to resolve, but hopefully it will prevent the company from firing anyone else in this way while the issue is being resolved.

While I was on the phone with the union president, I also brought up the subject of the disability pension and whether I actually had to be receiving SSDI to qualify for it. He told me that the penson plan is essentially unchanged since before the agency was formed and that everyone before me who went on disability had to actually be receiving payments from SSDI before the pension would pay disability benefits. Bummer, but at least I know where I stand on that now.

Dan found a local graphic arts job opening he may look into. He's getting really frustrated because he's gotten absolutely no non-automated replies for the jobs he's applied for. I wish someone would give him a break and call. He could use the interview experience.

Dan decided to move up the vacation he'd planned in November to Labor Day week. We're reluctant to spend the money to stay overnight someplace, so we're probably gonna take a few day trips up to the mountains. I'll be bringing the digital camera so I can shoot away to my heart's content providing the batteries are charged. I'm hoping to see some wildlife and perhaps a few early fall-colored trees.

There was other stuff, but I've been staring zombie-like into space for the past 15 minutes trying to remember what, so that's it for now.

Monday, August 22, 2005

Rave of the Day for August 22, 2005: 

Was looking for links regarding SSDI on this very helpful website, and guess what I found? A link to my own article on travel tips that I wrote for But You Don't Look Sick! I'm famous! So I thought the least I could do was return the favor and post a permanent link to the Social Security Disability Coalition. Check it out.....if you're anywhere in the disability application process, they can help you out, and if you're healthy, you can learn why disabled people have such fear and loathing of Social Security.

Crashing "Crashers".... 

Dan, a friend and I decided to see a movie but were having trouble picking out one, so Dan wrote down the names of a few on pieces of paper, put the pieces in a bag and let me draw one. I picked "Wedding Crashers". Then we did best two out of three, and I picked "Wedding Crashers" again, so we decided it must be our destiny.

The movie didn't really look that good from the trailers on tv, so I wasn't expecting all that much. I was pleasantly surprised. It was genuinely hilarious! I especially liked Jeremy's speech on dating, the bridesmaid cracking up during her sister's wedding vows, and Will Farrell's brief appearance as the wedding crashers' mentor. The John and Jeremy characters were jerks, but they were so funny that I found myself not minding. And they turned out to be fairly harmless compared to some of the characters that showed up later. Too bad most uninvited guests aren't so entertaining. And too bad Christopher Walken isn't really running for president.

There was other stuff I was gonna mention, but I'm having trouble organizing any more thoughts, so I guess I'll call it a night.

Saturday, August 20, 2005

I fought the lawn, and the lawn won..... 

I feel like such a tard. I kicked my own ass today.

For the first time in quite awhile, I awoke with a decrease in fatigue. It was only a slight difference, but I took this as an encouraging sign and decided I should celebrate by returning to some light weed pulling in the back yard since it was coming to resemble a jungle again. I hadn't been able to pull weeds since before my sister's wedding due to the extreme heat. I thought I would be all right today since the temperature was under 90 degrees. I was careful to stay out there no longer than 30 minutes, which, believe me, doesn't give you time to accomplish much.

I knew as soon as I stood up (I'd been sitting down) at the end of the half hour that I'd made a huge mistake. Along with the usual light-headedness that accompanies any time spent in the sun, the fatigue returned with the velocity of a bullet. I staggered over to the couch and watched some extreme sports in a daze. My knees were screaming in pain even though I didn't think I'd been using them that much. I decided they might feel better if I took a shower. It did help briefly with the soreness, but the heat from the shower made me even weaker, and I had to put off making lunch to lie down.

I'm trying to remember if I was this bad the first time I pulled weeds in May? I think I was. Perhaps I'll get acclimated if keep at it in small increments? I'm debating the wisdom of this theory. Can one get themselves in shape for sitting on a mat pulling dandelions out of the gravel in the yard?

Helped Dan do a follow-up letter for a job he applied for a few weeks ago. The newspaper in Sioux Falls wants a graphic artist. I can't think of a better candidate since he has both experience in a major city and in South Dakota. He got his degree in Sioux Falls, for heaven's sake. He also found another opening at an ad agency in Sioux Falls. He's gonna tweak some of his portfolio samples and then apply tomorrow. As much as I truly loathe the idea of moving, we'd be in a helluva lot better shape economically if we lived someplace with a cheap cost of living like South Dakota.

Oh, wanted to mention that Chip D. Dog has a new nickname: Cinnamon Buns! Last weekend, Dan and I went out for awhile. We were careful to put the trash can in the garage. I think it was because he couldn't get into the trash that he noticed a nearly full container of cinnamon roll sitting on the counter top. Now, Chip hasn't pulled anything off the counter since he ate the spatula and the drippings catcher from the Foreman grill about five years ago, so we figured we could trust him. But when we got home, we found the plastic wrapper from the cinnamon rolls right in front of the dog door, and just a few shreds of the carton in the yard. Not a single crumb of the rolls remained. That dog had eaten FIVE rolls! Didn't seem to have hurt him any, but it sure did tick me off.

Time to pry myself outta this chair and heat up some waffles.

Friday, August 19, 2005

Tidbits of the past week (if I can remember them)..... 

Funny. All day long, I keep thinking of things I want to mention here, but when I actually start typing, all my thoughts seem to vacate. I'm particularly foggy since my visit to the Social Security office....maybe I sent them my brain along with my application??

One thing I do remember is that Wednesday afternoon was a classic example of what happens to my cognitive function when I'm having a flareup of symptoms. I was feeling hypoglycemic, and not up to cooking at all, but I really needed to eat, so I had no choice. I thought, I'll stick with something simple and fairly fast like rice spaghetti. Well, I got the pasta started, but I forgot to set the timer, and then I forgot I was even making spaghetti, so I overcooked it, and overcooked rice spaghetti turns to mush. I was too tired to start over, though, so I drained it the best I could and tried not to notice how slimy it was. And I chopped up some ham to put in the sauce but then didn't realize I'd left it on the cutting board until after I'd already heated the sauce. By this time I was disgusted with myself and ready to pass out from hunger, so I just put the cold ham in the sauce, stirred it up, poured it on the mass that had once been pasta and dumped a shitload of Parmesan cheese on it to disguise the taste. Thank God for cheese.

Did something cool on Sunday. Dan had found "Say Anything" on DVD for cheap and bought it for me the day before, so we sat and watched it. Then we went to the theatre and saw "Must Love Dogs" (second time for me). It was fun comparing the John Cusack of 1989 to the John Cusack of 2005. I must say he held up pretty well. And I snuck contraband chocolate-covered macadamia nuts into the theatre, which was a bonus.

Did watch "Rock Star: INXS" this week. The contestants did not get to choose their songs this time, instead having to sing whatever was assigned to them. There was an overall decline in quality because of this, but I thought it made things a little more clear as to who could cut it and who could not.

Jordis is still the best female performer on the show. She did "Knocking on Heaven's Door", and while I don't think it was her best effort, she still put the other ladies to shame. I think she has a chance at winning.

Jessica did another adequate performance with "Torn" by Natalie Imbruglia. But following Jordis, she just sounded ordinary to me. Thank goodness the audience agreed with me and she was finally booted off the show.

Ty did a really interesting version of "Maggie May" by Rod Stewart. Not his best performance either, but it did show he is versatile enough to pull off a song most others would butcher.

Suzie did a song I wasn't familiar with: maybe that's why the audience voted her in the bottom three. I liked her performance, though, and was relieved when the band kept her on the show.

Marty got a huge curveball thrown at him. He was actually told to sing a Britney Spears song! What a cruel joke! I was stunned when he changed it from pop fluff to someting dark and intimidating. Kudos for having the guts to pull it off.

Deanna did "I Can't Make You Love Me" by Bonnie Raitt, which is a lovely song, but I felt there was something lacking a bit in the performance, and the other viewers agreed with me and put her in the bottom three. She did make up for it on Wednesday night and got to stay.

J. D. did an ok version of "As Tears Go By" by the Rolling Stones. He just doesn't compare to the remaining performers, plus his tude is very annoying. He needs to go, and soon.

Mig was the biggest surprise of the night. He was assigned "Baby I Love Your Way", and even though I've been rooting for him, I didn't think he could do a ballad justice. Wrong! Not only did he sing it well, he played piano and just blew me away. So I'm contnuing to cheer him on.

In other news, I got a copy of my long-term disability insurance policy and read it last night with considerable difficulty. From what I can tell, they will be able to subtract not only my SSDI but also my disability pension from the total benefit they will pay. AND they can subtract funds I receive from any sort of lawsuit, but I don't see how they can do that if the suit has nothing to do with my employer or them. The worst part, though, is the clause on "self-reported symptoms" in which they can limit benefits for ailments whose primary symptoms are "subjective" such as pain, fatigue, numbness, headache, stiffness, soreness, tinnitus and vertigo. How can they get away with this??? Most major chronic ailments involve at least some of these symptoms, and even Social Security recognizes severe fatigue as a disabling symptom. And I believe several of these are quantifiable in part. Numbness can be confirmed by a neurologist, and I don't know how you'd fake the results of an EMG since it involves involuntary physical response. If stiffness is caused by something like a trigger point, that can be felt under the skin. I spent a year doing vestibular rehabilitation....a practiced physical therapist knows whether or not you're faking dizziness. If tinnitus is severe enough to cause hearing loss, the results can be shown on a hearing test. Pain response can be shown in an FMRI, and while I know those are used for research only right now, it doesn't mean pain can't be proven. And sleep studies that demonstrate the presence of a sleep disorder are more than adequate proof of fatigue in my book. I'm fairly sure I will be mentioning this to a lawyer at some point.

One thing reading the policy did for me was clarify exactly how much I can expect to receive per month if I am approved for benefits. I did do a tentative budget at the beginning of the year just in case I went on disability, but I can't remember what I based it on, so I'm gonna start over. I'm actually gonna do one budget based upon our current expenses and then one based on some scaled back expenses and compare the two. I need to find out if we can cut back enough to keep the house without refinancing or moving someplace cheaper. I don't do math too well anymore, but luckily I have financial software to do most of the work. Dan is getting very stressed out about the money thing, and I think it would help if I told him exactly what he can spend on non-essentials.

Well, my hands are furious with me for typing so long, so, so long.

Thursday, August 18, 2005

Did the deed.... 

My husband took me, which was a good thing because I don't do mornings very well. My appointment was for 9am, which was right when the office opened. I didn't know, though, that they open the lobby at 8am and take you first come first served even with an appointment.

Thank goodness for the suburbs...this local office was way less crowded than the one downtown I'd gone to when I got a new SS card in my married name several years ago. Most of the people at this office arrived for name changes and other quick things....only two people besides me came in with significant paperwork in hand. And unlike downtown, there were chairs at this office, so I was able to sit while waiting to be called.

The lady who called my name was surprisingly nice. She had a very heavy Spanish accent, though, and with my hearing problems, it was a bit of a strain to understand her sometimes. But I had written down all the important stuff, so I just handed it to her rather than try to spell it out, so it worked out ok.

Luckily, a lot of my information was already in the computer because I've only had one job the past 10 years and most of my docs were in their database. All the lady had to do was type in the doc's name, and the address and phone number came up automatically. But even with these shortcuts, it still took an hour and 45 minutes to apply.

When collecting doctors' names, I noticed that I was asked fairly early on if I was receiving any psychiatric care, and they were very interested in whether I had any mental disorders. I did admit to being treated for depression. I suppose that could end up being important later.

The lady that took my application was very surprised by the amount of medical records I had brought with me (a stack a few inches thick) and was even more surprised when I told her that I only had about a third of them. She said a lot of people don't bring anything at all, which slows processing of their claim. She said that right now it takes four to six months to get a response on an application, so the more info you can provide at the beginning the better.

I included my husband's notarized affadavit as to how my ailments interfere with work and daily activity. I also included what amounts to a pain diary, two years of notes I gave my docs detailing my symptoms. At least Social Security won't have a strong argument for lack of details about my illnesses.

It's a very sobering thing to agree to have a government agency contact your employer and all your docs and to agree to possible consultative exams by docs who may know absolutely nothing about your condition. I feel like I signed away control over my own life. Well, I signed away financial control, anyway.

Now I've got very mixed emotions. I'm very relieved to get the application over with, but depressed about my new life as a disabled and financially troubled person. And I'm afraid of becoming invisible to the world of healthy people.

Over the eight years I've been sick, I've become quite adept at not letting emotional stress take over my physical health. But this has been too much, and I'm really suffering on both fronts. I'm pretty much a zombie tonight with a skyrocketing pain level.

I figure though, that things will only get better from here because there aren't lots of things that could bring me lower. At least that's the way I prefer to see it. If I can manage to not hide under the covers for the next six months waiting for Social Security's response, that will be a major accomplishment.

So tired.

Tuesday, August 16, 2005

On the eve of selling my soul to the feds.... 

...what they don't already have, I mean. I apply for Social Security Disability Insurance tomorrow morning at 9am. Actually, I'm supposed to be there at least five minutes early even though the office doesn't open until 9. That's the government for ya.

Oh, all right, in case this is being monitored, I'm gonna confess a few things here. One is that the lady I spoke with on the phone when I initally made the appointment was very nice. We had a slight language barrier because she had an Asian accent and I don't hear terribly well, but the call went well. The other is that they actually give you a reminder call the day before your appointment, which is decent of them.

I THINK I have everything that I need. I'm feeling kinda freaked out because my memory is so poor lately that I can't be absolutely sure I didn't forget something, but I did go through the checklist they sent me in the mail. I threw everything into a manila folder because I don't have the strength to haul anything heavier. I'm shocked how much my medical records weigh even though they're incomplete. My file's gonna end up being huge.

In other news, mixed results on deciphering my termination letter. I got a certified mail version of it today, so I know they're absolutely serious. I talked to HR and was told this was standard operating procedure and that my union has no protection against it. I had gone through my union contract late last night and couldn't find any language about this particular situation, so HR may be right. I did, however, get them to agree not to make my "resignation" effective until after I've had an opportunity to talk to the union prez, who will be back in town a week from today. And I got permission to receive the vacation I am owed a week at a time until it's gone. Unfortunately, it doesn't quite come to the amount I was expecting because of all the time I missed last year (off in January for surgery and in July for illness), but I'll take whatever I can get.

My next call was to the LTD guys. To my surprise, I DO qualify for benefits as long as I was still employed at the time I applied for them. I had read what I thought was my policy last night (turns out it's just a summary), but it was very vague and had led to most of the confusion. I am now trying to get a copy of the entire policy sent to me in the hope of avoiding any more misunderstandings.

I read a lot of stuff last night trying to figure out what I was gonna do in case I didn't get LTD. In re-reading my pension plan, I saw that the requirement for a disability pension is described as being "eligible" for SSDI. It didn't actually say I had to be APPROVED for Social Security to receive the pension, so I'm gonna check into that. One of the risks of trying to get the pension now may be that I have to go to a doc they pick out for an evaluation, but then, the LTD guys can do that too.

Been re-checking other things such as pre-payment penalties on our second mortgage (in case we need to move someplace cheaper), surrender fees on our annuity fund, how much I'll have to pay in taxes if I must cash in my 401(K), etc. I ran some figures on re-financing back to a 30 year mortgage, but the rates are rising, so we really wouldn't save very much. I feel more informed as to what to expect if I have to take a certain course of action, but my head is swimming, and I'm quite exhausted. The house is a wreck from all the paperwork I dug up, but I don't have the energy to put it all back. I guess I'll get to it after I've had a chance to recover from my SSDI application adventure.

Are we having fun yet??

Monday, August 15, 2005

Insert scream here..... 

My efforts to raise hell didn't go very far. The union president is on vacation and won't be back in town until after my termination would be effective! My local rep and the vice prez don't know what the F to tell me. They had no clue whether the terms of the letter were enforceable or whether I was SOL.

I'm pretty sure that the manager that signed this piece of crap knew I wouldn't be able to get a hold of the president until a week from Tuesday. I'm calling HR first thing in the morning even though I hate doing it without knowing what my rights are. I believe this action is in violation of my union contract and that this manager is just trying to see if she can get away with it. At least I hope that's the case. Since I'm the first in my department to apply for LTD, she's probably using me as a test case....you know, offer a benefit like LTD and then can the applicant before they can be approved. I love being made an example of. I also love having my fingernails removed with pliers. The hell I do.

I'm not sure which makes me angrier, the gall of this harpy of a manager or the sudden lack of support from my union. When I was limping through the past few years of work, these people swore up and down that I couldn't just be capriciously fired once my FMLA had expired. Now it appears to be happening, and they're just shrugging their shoulders and saying that our contract maybe doesn't cover that. What the F am I in a union for if my job isn't protected?? They should at least make a friggin' effort.

Without LTD, I can't make mortgage payments. But for now, I'll take the advice of "The Hitchhiker's Guide to the Galaxy" and in fact will repeat it like a mantra. Don't panic. Don't panic. Don't panic.

But it didn't say anything about not getting royally pissed.....

Saturday, August 13, 2005

Things is gonna get ugly.... 

Guess I'll mention the good news before I start ranting uncontrollably. Got my medical records from my ENT's office in the mail today, way sooner than I was expecting. They only go back two years, but it's much better than none at all. If Social Security wants the other three years they can request them. What I do have is well-organized and quite descriptive....nothing hand-written or vague. And I learned quite a bit about what the inside of my nose and throat looks like....ewwwww. Let's just say there's plenty of evidence of Sjogren's syndrome. This should help my case quite a bit. My rheumatologist's opinion will get the most weight, but there is more objective evidence of autoimmune disease in the ENT's findings. I'm making copies of the records right now.

So while I'm obviously psyched about that, I got another piece of mail today that is making my blood boil. It's a letter signed by the manager who was supposed to make arrangements for me to get my unpaid vacation time this week. The letter states that if I don't return to work on Friday, I will be terminated! WTF?? If they had intended to do this, couldn't they have said something BEFORE my interview with the long-term disability company since I will be ineligible for benefits if I lose my job?? I've been assured by my union multiple times that this wouldn't happen. It could be either a mistake, a misunderstanding or a bluff on the manager's part, but I don't care. I told the union reps several times that I didn't trust this woman and that I was fairly certain she would try to fire me because she did the same thing to the last person who was on disability. I believe she may be acting alone since I talked to payroll, human resources, two union reps and the department secretary this past week and none of them even hinted this might happen. Of course, it is always possible that some of these people did know (not the union guys, though) and either were too chickenshit to say anything or assumed that I knew already. What a friggin' nightmare.

I will, of course, begin raising hell first thing Monday morning. I want this cleared up before my SSDI appointment on Wednesday so I can focus on filling out the forms properly. I'm calling the president of the union first. I want some sort of guarantee that my long-term disability policy is still enforceable. As far as I know, if I'm terminated, I'm SOL as far as employer benefits go (except COBRA, which is mandated by law). I've paid into the long-term disability insurance policy for years now and am furious to think my employer can just capriciously take that away from me. Why offer a policy if they're just gonna fire you before you can use it? I know it was probably planned that way, their thoughtful way of saying, "Thanks for the ten years of service. Don't let the door hit your ass on the way out."

I know I've said this before, but I'm pissed, so I'm gonna repeat it. When the HELL did it become a crime to get sick?? I busted my ASS trying to work years after I was too ill to perform up to the standards of most occupations. I came to work with migraines, when I was so exhausted I had to sleep in the car all the way to work, when I could barely walk, when I was in so much pain I had to go in the bathroom and cry, when I was so foggy I couldn't spell my own name. I saved ALL my energy for that job. I continued to work for nearly a year after my docs told me I should give it up. I'm not asking for anything I didn't rightfully earn. I just want to be able to keep a roof over my head and to be as healthy as possible.

That's another thing that ticks me off: that I busted my ass for eight years trying to get healthy and now must prove to agencies outside the medical community that I really am sick after all. Why isn't the opinion of my doctors sufficient? Why is it legal for an insurance company to follow me around and video tape me? Why do I stand only a 25 percent chance of my initial SSDI application being approved? Why must I go to court if I am denied? In the words of Richard Nixon, "I AM NOT A CROOK!"

Ok, I've utterly exhausted myself with this rant. I want chocolate, but there's none in the house. Probably just as well.

Friday, August 12, 2005

Sad news, good news, and stuff in between..... 

My dad called today to tell me that a family friend has died. This was not unexpected as she had been battling cancer for a long time, but I was still surprised because I thought she'd have a little more time. She was at my sister's wedding just a few weeks ago, and we talked about how great it was for so many of us to have gathered for such a joyous occasion. She will be cremated, but there will be a memorial service, which I plan to attend.

Got a gift package in the mail from Canada yesterday. Yayyyyy! Four music CDs and a small magnetic posable duck. Have listened to one of the CDs already: it has songs on it from Incubus, the Goo Goo Dolls, Collective Soul, Joe Jackson, Elvis Costello, the Violent Femmes, XTC, Radiohead, Nirvana and others. Right up my alley, and a welcome distraction from events of late.

Got a small check in the mail today. It says it's for 5 hours of work. I have no idea if this is part of the shortfall I contacted payroll about or not. But I'll take it.

Chip did something hilarious today. I was cutting up a baked sweet potato when a small piece of it fell on the floor. So I did what I usually do when there's food on the floor: I called Chip, the canine vacuum cleaner. He got so excited that there was a crumb for him that he went flying into the kitchen, and in trying to stop, stepped right on the sweet potato chunk, which stuck to his paw. Then he went nuts because he could smell the food in question but couldn't find it. So I had to get him to sit and let me look at his paw. The sweet potato piece had gotten wedged between two of his pads. I couldn't believe he hadn't noticed.

Still haven't heard back from my former manager about the vacation pay owed me. I'll have to call her next week. The manager has in been a lot of meetings this week regarding layoffs, so I've tried to be patient. Still, this is a significant chunk of change we're talking here, so it's rather important to me.

Dan's migraines have been getting worse again, and he was desperate to find something new for them, so I suggested feverfew. He found a preparation that contains feverfew, magnesium and riboflavin, and he tried it and says it helps. Huge sigh of relief. Have my fingers crossed that this will work long term.

Tomorrow, Dan and I will probably go to the Social Security office just to make sure we'll be able to find it on Wednesday. It's not in an obvious location like the one downtown. This one's near a frontage road and has a suite number. I hope it won't be as overcrowded as the downtown office.

I think the summer heat wave has finally broken. We had gotten a few cooler days here and there, but the temperature would always go back into the 90's the very next day. The forecast this weekend is for temperatures in the 70's with 80's all next week. Hooray!!

Finally did get the photos of my sister's wedding and my digital pix for 2004 and 2005 printed. All told, some 335 pix! Have sorted them for album pages but haven't gotten a chance to prepare any wedding pix to send out in e-mails yet.

In fact, there's a lot of things I haven't done because I've been so caught up in researching and preparing my SSDI stuff. I joked with my therapist yesterday that in order for me to self-advocate, I've had to become both a doctor and a lawyer. That's not as far from the truth as it sounds.

"When everything's made to be broken, I just want you to know who I am." --the Goo Goo Dolls

Willie Wonka's squirrels are dragging me to the garbage chute..... 

....because this applying for disability shit has driven me nuts.

I'm researching as much as I can on how best to support my SSDI application on Wednesday, but the more I find out, the more upsetting the whole process becomes. Someone actually suggested to me that I not have vacation pix on the web because a judge could decide that since I went to Hawaii last year, I must not be disabled. Never mind that the trip was four months before I stopped working, that I had a month-long flare afterwards, that my fatigue caused me to doze off during meals and on tour buses, and that the pain from sitting on an airplane to get there and back drove me to tears. And that the only trip I took this year was to a local convention where Dan had to push me around in a wheelchair for three days. Most of the pix of the convention were taken from my wheelchair.

While I'm having a hard time believing Social Security would go to the trouble of looking me up on the web, the long term disability company probably WOULD do that. This company has done video surveillance on people who filed in the past, so web surveillance would not be out of the question. If they do start snooping around the web, I hope they find this blog, because most of my entries mention something about the reality of illness in my life.

Anyway, I've decided to remove all photos of myself from my gallery pages and websites. I am NOT going to take down the galleries as it took too damned much work to build them. And I'm NOT giving up the blog as it's my only link to many people who are concerned about my welfare. I have gone to a few message boards and have eliminated e-mail access and links to my websites, even though I feel like my work on them is being wasted if no one knows about them. I'll probably be scarce on message boards except to offer support. I haven't yet deleted all my gallery page links, but plan to finish that up tomorrow. So I won't disappear, but I may be slightly less accessible. And those of you who hadn't already seen a pic of me will be SOL.

In gathering pay stubs to bring to my Social Security interview, I noticed that the raise I was supposed to have gotten in January appeared and then disappeared. So the long term disability had been given the wrong pay scale by my employer, AND I was underpaid on my short-term disability to the tune of $400, a very expensive tune. It took six phone calls and five days, but I managed to get payroll to agree to send me a check for the $400, and got human resources to call the long-term disability company with the right pay scale figures. Now my only business remaining with my employer is to get paid for the 22 shifts of vacation they owe me. My manager was supposed to get back to me nearly a week ago.

Did get the last of the medical records from my rheumatologist today and have made copies of them. They will be the most important proof of disability according to SSDI. Called the ENT's office today about records since I only have a few. That doc moved at the first of the year and only took the last two years of my records to the new office. The other three years are in storage someplace, and I probably wouldn't have time to get them before Wednesday's SSDI appointment, so I asked if I could at least have test results from the last two years. It will really help my case if I provide a copy of my lip biopsy results as that was what diagnosed my Sjogren's. I don't have any records for my gastroenterologist except for the results of my endoscopy showing evidence of gastroparesis, but I did tell her last month that Social Security would be asking for them. I do have all of my records for three neurologists, some sleep study results and my neuropsyche exam. I probably should have worked harder at getting all of my records, but I got kind of complacent when I read Social Security's statement that they would obtain any records that I didn't already have. Then I found out last night that a lot of records never make their way into Social Security's possession because they don't try very hard to get them. Also, a lot of records are stored at facilities who charge a fee in advance for making any copies, and Social Security won't pay in advance. But I don't have enough time to get any more records sent to me before Wednesday. Hope it doesn't come back to bite me in the ass.

Did get an excellent idea in my research of asking Dan to make an affidavit as a witness to how my illness was impaired at work. He's gonna put together a letter about how I was falling asleep at my desk, any mistakes he saw me make, how often I missed work due to illness, physical limitations, etc. This can be considered valid testimony if it is notarized.

Did quite a bit of thinking about it and decided that I am going to include my own doctor visit notes with my Social Security application. Before every visit with a specialist, I type up a summary of what symptoms I'm experiencing, what treatments I tried since the last visit, and any concerns that need to be addressed. I started keeping copies of these notes in April 2004. I'm also going to include my description of a typical day for me that I wrote in June as it contains a lot of the information Social Security asks for in their function report. There's always the possibility that some of these statements could be mis-interpreted, but then again, I don't want to risk being denied due to lack of information.

I feel as though I'm back in college the week before finals, trying to study for an essay exam in which there are no right answers for a professor I've never even met. I can study and study, and I won't have any idea how well I did until well into the next semester.

Did run across something that pretty well sums up how I feel about the Social Security process right now: it's a petition for reform. I signed the petition and encourage anyone reading this blog to check it out:
Social Security Disability Reform

I'm not even gonna pretend to be strong about this. I'm depressed and humiliated and resent the way disability applicants are treated like criminals. My migraine, which did respond to massage and disappeared for two days, is back (although thankfully not nearly as bad as before). I am having scads of nightmares. I dream about being homeless, about being naked in public places where I am laughed at, about having to live in a monkey cage at the zoo. I even dream about dying from my illness all alone. I feel like a burden to Dan....he is terribly stressed out due to the uncertainty of our financial future, and I have no means to reassure him. I am continually fighting powerful feelings of worthlessness, even though I know in my heart that I must still be good for something. I awoke in tears this morning and have fought them a good deal of the evening. There have been a few occasions I've retreated to bed because I just couldn't deal with the reality of having so little control over the direction of my life. I've forgotten to take a shower three times in the past few weeks, and have forgotten to eat on several occasions. After eight years of valiant fighting, the illness is winning.

I did see my therapist today. It did help for several hours. But I can't help marveling at how sane I was before I stopped working. I'd give anything to be able to get up tomorrow and go back to work. Anything.

"You've got to get yourself together. You're stuck in a moment, and you can't get out of it." --U2

Wednesday, August 10, 2005

The view from the couch.... 

Had a bit of a dilemma: ABC has brought back "Boston Legal" and is running it at the exactly the same time as CBS' "Rock Star: INXS". I ended up taping "Boston Legal" so I could watch it later. I think this confirms my new status as a sofa spud.

Anyway, wanted to watch "Rock Star" at the proper time as I actually do vote after the show is over. Tonight, it was easy to pick who should be eliminated: Jessica massacred "Come As You Are" by Nirvana. I think because Marty got away with "Lithium", she thought she could win over Dave Navarro too. Nope. Will find out tomorrow night if she's outta here.

Suzie re-worked "Losing My Religion" by R.E.M. with great success. She managed to show her creativity and show off her versatility. Impressive.

Mig, the Aussie I'm rooting for, did an outstanding rendition of "All Right Now" by Free. He had the right intensity. I've seen this song covered before, and usually it's too slick and predictable, but this version was exciting. And his low-rise pants and unbuttoned shirt didn't hurt either, heh heh.

J.D. did an adequate version of "Crazy". He's not my favorite....acceptable but not a real standout in any way. And his tude is very annoying. It wouldn't break my heart if he got thrown off the show.

Jordis had an unusual choice: Eric Clapton's "Layla". Not her best performance, but she still sings way better than the other women. If they pick a woman to lead INXS, I hope it's her.

Brandon did a very good version of "It's All Right Now", but I just can't see him singing with INXS on all their music. His style clashes with their slower songs in a big way. I think he's a goner.

Marty took another big gamble, and it kicked ass. He went solo playing his own acoutic guitar and singing "Mr. Brightside" by the Killers. I love the lyrics on this song, but didn't think Marty's voice was strong enough for this sort of showcase. I was wrong. Marty put all kinds of emotion into it, and I believed every word. It may end up not mattering that he doesn't have the greatest voice because he has the charisma and presence of a star already.

Deanna did a fairly good interpretation of "Long Train Running" by the Doobie Brothers, and looked awesome. But she kinda overpowers her songs in places. Her voice is good, but lacks the inflection required of a more subtle song. Maybe if she did a ballad, I could see some versatility.

Ty more than made up for last week's Foo Fighters ouch. He did a really inspiring rendition of Bob Marley's "No Woman No Cry". He completely embodied the spirit of that song. I'm very curious whether he will be chosen for INXS because he does have the best voice. And he does have the confidence to pull it off.

Thanks to the wonders of videotape, I got to see "Boston Legal" tonight as well. I'd never watched it before. It was a bit shocking at first just how rude James Spader's character is, but I began to enjoy it more when I saw this working for him. And William Shatner's character is so over the top that you just have to love to hate him. I will be watching more of this show for certain.

Have been really busy with disability and monetary issues, but I'll have to save the play by play for another day as I'm exhausted and starting to think in gibberish.

"Oh, no, I've said too much." --R.E.M.

Saturday, August 06, 2005

Big day yesterday.... 

Started with a phone interview conducted by my long-term disability insurance company. Apparently, they don't have you file paperwork anymore. I don't like this policy because it is harder to express myself verbally than in print.

Even though I was covered by this company's short-term policy for the past six months, basically, I had to start my claim over because they don't use any of the information from the prior claim. So I had to answer a lot of the same questions I've answered several times before. Luckily, I had typed out info I'd prepared for Social Security to use as a "cheat" sheet.

There were a lot of very pointed questions, and it seemed like no matter how I answered some of them, I left a way for the company to deny me coverage. But you have to be honest....if you say you can't do any yard work or drive or do your own errands, you can bet they'll be following you with a video camera to make sure you don't. Because I can still drive short distances, do light housework (like putting dishes in the dishwasher and basic cooking) and go to an occasional movie, I suspect the company will be wanting me to do a functional capacity test in the future.

Like most LTD policies, my SSDI will be deducted from the total amount the LTD guys pay. So when I am awarded SSDI, I will owe most or all of my back pay to the LTD company. This is in exchange for them paying benefits while your SS decision is pending.

Found out to my surprise that this policy pays monthly in arrears, so if you qualify for a certain month, you won't receive payment until the following month. The very earliest I will get paid is in October. Yikes.

Another surprise was that they are computing my benefits on my old pay scale. I got a raise before I stopped working, but payroll "forgot" to include it on that week's check and apparently "forgot" to give the revised figures to the insurance company too. I'll have to go to my union rep to see if this discrepancy can be fixed.

They also told me that they have a provision in their policy to cut off benefits after 24 months for "self-reported" symptoms such as fatigue, pain, migraines and cognitive dysfunction. This is news to me. I'd like to get a legal opinion as to whether this policy is actually enforceable.

This grueling interview lasted an hour. It was very disillusioning to realize that my financial future is totally out of my control. I felt useless.

After the interview, my next step was to call my union rep and see when I could get my employer to pay me the vacation time I earned. I am owed 22 shifts, which should get me through the next two months of no LTD benefits. My manager has to have a meeting with HR about it, so it will likely be awhile before anything happens there.

Then I made an even more important phone call: I contacted Social Security to set up an in-person SSDI application. I was surprised to get an appointment for August 17th....I thought the wait would be much longer. Maybe my state isn't horribly backlogged?

Did finally get the month of back pay I was still owed for short-term leave. I'm glad to have it, but am not thrilled about the creative bill paying I've had to do over the past six months because I never know whether or not I'll have money. I guess everyone on disability gets to do this juggling act, which is stressful.

Have been going through my monthly bills trying to figure out what expenses I can forego or reduce. There aren't as many as I'd hoped. Like most people on disability, aside from the usual living and transportation costs, most of my money goes toward my health.

The on-again, off-again migraine of the past few weeks won't completely die. It's almost as frustrating as this disability stuff. Almost.

Sigh. Sigh. Sigh.

Thursday, August 04, 2005

An excess of talent? 

Watched "Rock Star: INXS" Tuesday night. Again, nobody was awful, and it was harder this week than last week to find flaws in the performances. But some shone more brightly than others. One standout was Deanna doing Melissa Etheridge's "I'm the Only One" with lots of sex appeal and enthusiasm. Jessica, one of the weakest performers, did well on "Blister in the Sun" considering it's not much of a showcase for vocals. Marty, who blew me away with "Lithium" last week, did less well with the ballad "With Arms Wide Open", but he put a lot of heart into it anyway, and I found it charming.

Three performances were acceptable but not outstanding. J.D. did Joe Cocker's version of "The Letter", which I never cared for anyway as I always thought the version by the Boxtops was much better. Tara did "Message in a Bottle" reasonably well, but she was overshadowed by some of the others. The biggest disappointment of the night was Ty, I think because he has the best voice and so I had the highest expectations of him. He was obviously uncomfortable with the Foo Fighters song "Everlong", hesitant about the pace and seemed to be holding back.

Two performers were awesome. If I had to pick one of the women as the new lead singer of INXS, it would be Jordis. She has a strong voice without all the usual diva tricks. She can also do both uptempo and ballads equally well. This week, she sang "The Man Who Sold the World" by David Bowie and appeared to mean every word.

And I've got a soft spot for the good-looking Australian, maybe because they're trying to replace a good-looking Australian. Mig did "We Will Rock You" by Queen and brought the house down. Great vocal, lots of energy, good interaction with the house band....it's all there. So far, I'm rooting for Mig, but I wouldn't be disappointed if Jordis won.

Last night was the results show. The three lowest vote-getters were Brandon (who had done an adequate version of "If You Could Only See"), Tara and Ty. In order to avoid being eliminated, they each had to sing an INXS song. Ty got to do "Kick" and totally kicked ass! It was by far the best performance I've seen on the show so far. The band was blown away and quickly agreed to let him stay on the show. Brandon did well on "Devil Inside", but couldn't come close to Ty. Still, it was good enough to spare him for another week. Tara just didn't impress me, so I agreed with her elimination.

In other news, I got a phone call yesterday afternoon about an hour before I was supposed to have my interview with the long-term disability company. I was less than thrilled as I was in the shower when the phone rang. Anyway, the benefits coordinator said she had to leave early unexpectedly and would have to re-schedule. So we're gonna try this again tomorrow at noon. I'd like to get this out of the way because the longer I wait, the longer I go without benefits. The coordinator did mention that she has already requested medical records from my rheumatologist and ENT, so that's something.

The migraine FINALLY let up yesterday morning, although it is trying to make a comeback today. I'm gonna have to find a way to go back to seeing the chiropractor and massage therapist every three weeks.....once a month is just too long to wait. I don't want to spend the rest of my days hiding in darkened rooms trying to avoid headaches.

I'm supposed to get my back pay tomorrow! Yayyyyyyyyy! I've been sitting on a few bills and would like to get them taken care of. I also want to get my sister's wedding pix developed!

Been doing more online research on Social Security. Have found some informative articles that may come in handy in the future, such as income tax policies and supporting your claim with affidavits from co-workers. I think it's horribly unfair that you are subject to income tax on your SSDI, but the law is not terribly partial to those of us who are middle class or borderline low income. Sigh.

"Sometimes you kick, sometimes you get kicked." --INXS

Wednesday, August 03, 2005

Rave of the Day for August 3, 2005: 

Yayyyyyy! My July book review has been posted on But You Don't Look Sick!

Climbing Higher

I've been requested to do a review on "summer reading". I don't know what most people read in the summer, but I decided I'd cover a couple of Jon Katz books that I received as a present and read recently. Both books are about dogs and how they changed a writer's life.

Next month, I think I'll review one of my fibromyalgia books. The tough part is deciding which one, partcularly since a brand new one just came out that looks very promising. Of course, I'd have to acquire "The Complete Idiot's Guide to Fibromyalgia" in order to read and then review it, and I have several others on my shelf that I've already read. We'll see.

Tuesday, August 02, 2005

Ever see "Scanners"? 

You know, the movie where people's heads explode? I feel like that's what's gonna happen to me any minute. Problem is, I've been feeling that way for several days now.

I've had a nearly continuous migraine since my sister's wedding. It did fade some last Tuesday and Wednesday when the weather was cooler, but it never completely went away. Friday was an unintentional do-nothing day because I could not see or think straight enough to haul my carcass off the couch. On Sunday, I started off a bit better because I'd gotten a decent night's sleep the night before, but alas, I couldn't keep up the good vibes. When I was at the concession stand prior to seeing "Must Love Dogs" Sunday night, I couldn't read the sign above the counter with the prices. I don't get auras prior to migraine flareups, but that was as big a clue as I ever get that a monster headache is on its way. It hit me like a bullet after I'd been home for about half an hour. I tried to write a blog entry that night, but I could not even form a coherent sentence or even read what I was trying to write. I thought that was as bad as it could possible get. Wrong.

Woke up yesterday morning even worse: nauseous, disoriented, sensitive to light and motion, etc. Went to aquacise even though I had a bad case of the dizzies and I felt like someone was drilling into my eye sockets. Got home and tried to sit quietly on the couch, but I fell asleep with my neck at an odd angle, which did not help at all. Broke my usual no nap rule because I just had to lie down. Woke up nearly three hours later but feeling no better. Had trouble keeping food down, which I really don't need. Tried cold compress on the forehead, moist head on the back of the head....barely did anything. Finally took a sleeping pill and a Dilaudid together hoping I could sleep it off.

No such luck. In fact, today I nearly hurled while using the Gazelle machine. I hoped that a workout would get some endorphins going or would help somehow, but I ended up with my eyes closed hanging onto the hand rails for dear life because the ceiling fan over my head was causing motion sickness. Ack.

My theory is that I re-activated some old trigger points at the wedding. I know where one is: off to the right of where the spine connects to my skull. I've tried working on it, but the room spins when I do, so I should probably save it for the massage therapist. Problem is, I started cutting back on visits due to declining finances, so instead of going this week like I normally would have, my next appointment isn't until next week when I know I'll have some money. So I'll have to figure out a way to hang tight for another week. Rats.

At the moment, it has backed off enough for me to do this blog entry, but I can tell that the relief is gonna be short-lived because I'm already getting bigger spikes of pain and nausea if I stare at the computer screen for more than a minute or two continuously. I wish there was a migraine med that worked for me.

I guess all I can do is wait and hope it burns itself out. I will make sure next week's massage appointment focuses solely on my neck and base of the skull. And I won't be dancing for awhile because I'm pretty sure that's where the problem began.

In other news, I got a call from my new benefits coordinator with the long-term disability insurance company. I was suprised because I was told I wouldn't hear from anyone for a few weeks. We set up an appointment for a detailed phone interview tomorrow at 2pm. I'm glad I know in advance so I can print out all the stuff I put together for my Social Security application and have it in front of me. I am sooooo absent-minded when I try to talk on the phone, and I need to have my shit together for this. I am counting on my approval for benefits because it will pay 50 percent of my previous income. Without their approval, I have nothing at all until Social Security kicks in, which could be a year from now. I want to get the ball rolling ASAP and see what the insurance company has in mind as far as assisting me with filing for Social Security.

Have borrowed the first two "Harry Potter" books from a friend but so far am only up to Chapter 2 on the first one. Haven't been able to focus much with the headache plus I've become a slow reader with all the cognitive dysfunction going on. Still, it should go better than the one I was reading about Katharine Hepburn and feminism.....I just couldn't comprehend much of it and finally had to put it down. Maybe later.

Good news on the weather front: tomorrow it is supposed to only get to the 80's, and 70's on Thursday! Yayyyyyyy! That alone should have me feeling better. Then temperatures in the 80's through the beginning of next week. It would be nice to be able to venture outside again. Dan finally took pity on me last week and went in the yard and pulled the weeds himself. I had been unable to do any yard work for a month because of the heat. He was able to do nearly all of it in only two days. At my pace, even if I'd been able to work on it every single day, it would have taken me at least two weeks to accomplish the same thing. I'm hoping if it stays a bit cooler but doesn't rain that I'll be able to fertilize the front yard. I'll probably take a peek in the back too and tidy up any weeds that Dan may have missed.

Well, my brain is sufficiently drained for the moment.

Must love Cusack.... 

Don't know why Roeper and Ebert disliked this movie so much. They gave "Must Love Dogs" two thumbs down. Is it the best romantic comedy I ever saw? Er, no. But I thought it did have a certain charm.

Maybe I'm just a sucker for John Cusack. Or maybe I was just in the mood for some light escapism. But the movie fit the bill for me. Cusack's character was intense and quirky, to be sure, but not farfetched. Of course, I DID date my share of artists, musicians and other creative types when I was single, so perhaps eccentric people seem a little more normal to me than they would to the average person.

And Diane Lane came across well as a cautious and reluctant newcomer to the dating scene. She's continually exasperated by her family, but with a family like hers, who wouldn't be? She's surrounded by well-intentioned lunatics who are all convinced they know what's best for her.

This is the first movie I've ever seen where a Newfoundland was prominently featured. Very expressive dog (or dogs I should say, because I'm sure they used more than one), and cuddly even though she's about the size of a grizzly bear. There was also a Westy (at least I think that's what the small white fluffy terriers are called), but he got a lot less screen time.

I LOVED the scene where Lane and Cusack drive all over town trying to find an open drugstore so they can buy a condom! The more desperate they become, the worse their driving gets. Guess they don't have any 24 hour Walgreens in their city.

I found this entertaining and amusing and would watch it again. Wouldn't make my top 10 list for romantic comedies, but it suits the genre nicely.

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