Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

My Photo
Location: fort worth, texas, United States

Monday, June 27, 2005

Dropped Eggs on Toast

I had a craving last night for dropped eggs on toast....this was after I had earlier attempted grilled mushrooms over filet mignon. Both of these were meals my mother made for me when she came up to help me out during the worst of my disease onset. I take after my mother in a variety of ways, but one that stands out is our dislike for cooking. What I can't figure out is why the same dishes a self-proclaimed kitchen disaster made so easily are barely edible when I try them.....

One of the common themes of my childhood was the fridge posting FFY (Fend For Yourself), which was my mother's way of telling us she would not be making dinner. When I was in grammar school I spent years being impressed by the initiative of the other kids in making their lunches - I couldn't figure out how they were self-disciplined enough to get up early to make such tasty lunches. It wasn't until I was in high school that I discovered that it was actually their moms making those lunches!

I know for a fact that there are many out there that would consider this poor parenting....what 'good' parent doesn't take feeding their kids healthy meals as a priority??


I can remember running into some difficulty with a 4th grade teacher in school - this man was wacko! A couple of years after I had left his class he was convicted of molesting children. I, fortunately, never had these difficulties but I firmly believe it was because my parents raised me to believe that just because someone was older didn't mean they were right. I never hesitated to fight back if I felt I was unfairly treated, because I knew my parents would back me. One day I had a blow-out with this teacher over his treatment of another child in my class and stormed down to the principal's office demanding to see my parents. I don't remember all the details, but I vividly remember my father walking into the office and flipping out when I burst into tears and ran to him. As far as he was concerned, he didn't need the details - he wanted to know what the teacher had done wrong. No questions for me - just 'where is that damned teacher'....or something to that effect. My hero!

I used to swear I would only bear a child if you could guarantee me it would be a boy. I remember what I put my parents through during the 'hormonal years' and couldn't imagine going through that again, even second -hand. My father used to approach me the way most would a ticking never knew when I would go off! My mother and I would have some knock-down, drag-out fights and during one such fight I remember her saying "you are being such a little bitch!". Ever eloquent in my teens, I replied "well, if I'm a little bitch YOU'RE a BIG bitch!". She paused, then informed me that she would give me that one, since she started it, but that was the last. I remember feeling as though I had dodged the bullet. LOL

As an adult, I consider my mother my best friend. We talk to each other, on average, once or twice a day. She assures me that we (my brothers and I) were all worth it - the economically strained years, the hormonal years, the "I hate yous", the temper get the idea.

When does it all end? I think parents like mine should be elected to sainthood. My brothers and I are all grown, now, and on our own....and yet, not. When my nephew was diagnosed with a rare genetic condition, my parents were there to offer support, physical and emotional. My sister-in-law is a terror when it comes to her kids - just try asking any school who has not lived up to their responsibilities when it came to my nephew's special needs. When I was diagnosed with my rare disease, my mother took several trips from Texas to Washington to take care of me. Dropped Eggs on Toast....the woman who HATES to cook must have made this dish 20 times in those weeks.

I am sure that there are rewards, but I am equally sure that there are innumerable sacrifices. I wish more people would consider those sacrifices before having their own children, as there are too many who discover they aren't willing to make them too late. Every child deserves parents like mine.

I was, and am, a lucky kid. Perhaps someday, I can be that parent......

Thursday, June 23, 2005


That was the essence of my response during my recent visit to a psychiatrist. I had decided to be proactive about getting some anti-depressant medication. All the signs were there - feeling tired all the time, difficulty concentrating, struggling to keep focused, pulling away from family and friends (and blogs....). I had been warned that prednisone can have this affect, and when you add troubles at work and upheaval with family (again - TEXAS??) all the pieces were in place to send my chemistry spiraling out of control.

Be proactive, I thought. Screw Tom and his fellow Scientologists....I'm not in need of therapy, I just need 'better living through modern chemistry'. So I made an appointment and worried that I'd wind up with a psychiatrist who would insist on digging for some buried childhood trauma (there aren't any). I wound up with a man who could easily pass for a chubby, cheerful priest - that character I had always hoped to find in the Catholic church of my childhood, and never did. Only discordant note is that this guy is TOTALLY pissed about the new pope. I know this because I listened to his rant for a full 20 minutes of my therapy hour. Oh - and he feels sorry for Katie Holmes, thinks that everyone will abandon Bush because that's what people do to those in charge these days, and that AA Milne and Frank Herbert are good role models....not quite sure I grasped in what way they were good role models....

He would jiggle in his seat like a 5-year old with a bladder control problem when he got excited, and would screw his face up and stick his tongue out mischievously when he said something a little left of acceptable (like when he kept calling me honey). In the first 15 minutes I wondered who in the room was really in need of therapy, the next 15 caught my attention (if only to try and track his criss-crossing thought processes), the next 15 had me absolutely fascinated and by the last 15 minutes I resolved to come back again, if only for the entertainment value.

This man is bright - VERY bright. He knew all about my rare disease (even told me some info I hadn't yet heard), and had very up-to-date information on the relationship between autoimmune diseases and depression. Did you know they treat obsessive-compulsive disorders in kids now with penicillin? In between his bizarre monologues, he would fire a question at me. By the end, he summed everything up with "Let's get you fixed up with some anti-depressants, and once we've got that going we'll work on re-directing that anger and need for approval".... Huh?? Wow! Where did THAT come from? Not that he's wrong...But how did he DO that?

I can't decide if he's a genius, I'm too typical to misdiagnose, or if it was just a lucky guess.....but now I'm hooked. I've GOT to see where this goes........

Thursday, June 16, 2005

Why Texas??

I just found out that my brother and his family are moving to Texas....cheaper than Seattle and closer to my parents, who would then be able to help out with the kids (my nephew has a rare genetic condition that affects his mobility). Plus, my sister-in-law found it personally offensive that the Republicans lost their case.

I moved to Seattle for two reasons - I love the northwest, and I wanted to be near family....and now they're all leaving?? Even my uncle is going to be living in NewMexico 6 months of the year.

Forgive the whine, but I HATE the heat. I hate to sweat, I hate the lethargy, I am a pale Irish/Italian/Dane who blisters instead of tanning....yeesh! I asked my company about open positions in Texas...I guess this will tell me if they really would like me out of their hair, or just out of the high-volume store. My mother is trying, unsuccessfully, to hide the fact that she is beside herself with excitement at the idea of all of us being so close.

Texas....don't they get tornados there? At least you get some warning, I guess. A fair trade-off for earthquakes??

Texas....hmph! I guess you can get used to anything, even 100% humidity.


Wednesday, June 15, 2005

More suggestions....

Here are some suggestions emailed to me for personal care/mobility aids....for the rest of the list, see "Due to popular demand" and "My Story":
  • a coiled key chain - you can slip it over your wrist, decreasing the chance that you drop them (I am a personal example of how difficult life can be when you drop keys!)
  • Walkie-talkies for those who live with others - better than the doorbell idea since you can communicate what you need. My only concern would be keeping it attached to you. Maybe attaching a cord and wearing it around your neck?
  • Cars with leather seats to make getting in or out easier.
  • And speaking of cars - according to what I read on the TMA website, most people with a Myositis prefer small SUVs....easier to get in and out of. I personally love my Hyundai Sante Fe (even if I didn't get the leather seats). Reliable, highly rated and CHEAP!
  • Shower seats - the foldable kind are easy to move in and out if there are others using the tub/shower.
  • I have one to add - there is a step stool available at QVC that has a high back to it. This is wonderful for adding stability when you need to reach something from a cabinet that is just out of reach (haven't you picked up someof those Gophers yet??). I'm only 5'2"...if I stretch, so that step stool has really come in handy! The high back gives you something to hang on to......

Keep those suggestions coming! I am hearing from several people suffering from a variety of diseases (Myositis, Lupus, MS, etc) who appreciate the tips!

Tuesday, June 14, 2005

There's nothing like a career in retail....

My sister-in-law once commented that she had no idea how difficult retail careers are until she met me and heard some of the stories....I know, I get this a lot. Many seem to think trained monkeys could do retail management.

Shortly after the dot-com fall-out in Seattle I was inundated with applicants looking for a job as a store manager. Despite the fact they had never worked a retail management job, they felt that not only did their background in running websites (or whatever) put them in the 'qualified' category, it also called for a match of their former many cases, more than I was making as a district manager! I asked one applicant why she decided to apply at ______ and was told that she thought it would be something 'fun and easy' to do while she waited for something in her field to open up.

I often say that retail management is controlled insanity. I would guess that those in corporate environments do not deal with nearly the amount of bizarre situations that we do on the 'front lines'. I am not challenging the complexity of other careers, merely defending the one I chose. Here are some examples of challenges I have faced over the years:

  • Being called by the police (twice!!) asking if I'd like to come and pick up the keys to XX store. Now, why would the police have the keys to one of my stores, you might ask? Once, because an employee called them asking to be taken to the nearest psychiatric unit for a self-admit. Once, because a customer had to call 911 when the only two employees working became involved in a brawl....turns out they had just discovered they were both sleeping with the assistant manager.
  • We won't even go into the number of freaky customers - I'll just go into this one example: We had a customer who kept calling and ordering books to be delivered to a variety of addresses. When the store manager got one of several back with a note attached explaining that the IRS is not allowed to accept gifts, she called me for direction. I told her to inform the customer that we would only be able ship to her home address going forward. The customer proceeded to call the store incessantly, harassing the staff. They gave her my number and I was greeted by a truly bizarre message that took up the entire machine. The essence of the message was that this woman was Miss America, but her identity had been stolen and she was being stalked by the IRS, the Post Office, etc, etc. I called her to tell her to stop calling the store and was treated to another insane dialogue. In desperation (I am NOT proud of this....really) I finally told her that if she didn't stop calling, we would contact the police...."the police", I said "you know, like the postman but with guns".....she never contacted us again.
  • Well, maybe one more crazy customer......we currently have what we refer to as the 'Crazed Crapper' who frequents my store. We can't seem to catch her, though I came close once (what other job would have you lurking in the women's restroom for 45 minutes trying to outwait a customer who refuses to leave the stall while you try discussing the public health concerns through the door??). She walks through the store smearing (ah-hem) sh** like a trail for some freaked out Hansel and Gretel. I had one employee earnestly insist that there must be more than one 'perp' because the poop was so different....I refrained from asking why he felt it necessary to put that much study into the clean-up process. I was just too grateful it wasn't me doing the cleaning for once!
  • I knew I had lived in NY too long when I looked back on my response to this situation: I got a frantic call from the manager of my second highest volume store (located in the notorious King's Plaza in Queens) telling me that the police had just cordened off the storefront....being as it was Dec 23, I could understand her panic. I told her to put one of the cops on the phone, and immediately began demanding that they open up a corridor allowing customers to enter and exit the store. "Hey Lady!" he exclaimed, "We've got a guy with his throat slit open on the bench in front of your store. This whole area is a crime scene!" "Are there customers waiting to get in?" I asked. "Well, I guess so" he said. "Well, then - let them in! You're killing my business! If THEY don't care, why should we??" Needless to say, this was not my best moment as it lacked a certain - oh, I don't know, sense of compassion? The cop didn't care for my suggestion....he hung up on me.
  • Then there was the call from a store manager who was completely at a loss as to how to handle the naked employee.....yup - NAKED. I had a similar reaction. Apparently, he recommended she take off a layer when she complained about the heat while vacuuming the store. The next time he looked up from counting the night's receipts, he discovered that she had removed ALL layers and was vacuuming naked.....
  • And how about that recent presidential race? We nearly had to hire security. You would not BELIEVE the abuse we took from people convinced that the bookstores were trying to impact the elections by 'favoring' one side or the other. Hey folks, we don't WRITE or PUBLISH the books - we just sell them! And being as our incomes and future employment are dependent on our ability to sell books (not to mention our closely held antipathy towards censorship) we sell ANYTHING and EVERYTHING our customers ask for. Just call me a retail whore.....
  • A friend of mine once had a guy die in her store.....he was sprawled out in front of the magazines for God knows how long with customers just stepping over him to get their magazines. It wasn't until a clerk went to put some magazines away that he was 'discovered'.....
  • For some reason, perverts just LOVE bookstores. The exhibitionists seem to favor the history section....why is completely beyond me. I just thank God I have never had an incident with a pedophile. You would think that parents would consider that pedophiles are attracted to areas that appeal to kids....despite that, numerous children under the age of 12 are constantly left in the children's department to amuse themselves while their parents go shopping. ARGH!!!

If you are looking for a stable, calm career - do not go into retail. If you are looking for a career that is a constant roller-coaster ride....give me a call! I just may have a position for you!

Harry Potter - are YOU ready?

My life is being consumed by Harry Potter. Two years ago we had a Harry Potter Midnight Madness party for the release of the last book.....and it was INSANE. This year should prove to be even crazier since people are more informed about the event.


Last time we had a few thousand (yes - THOUSAND) people show up. Many were in costume, and most of those were adults. Our escalators broke down under the strain, and it took three days to get them repaired. *whimper* People were sitting under tables, on top of tables, in aisles, etc... We had crafts, contests, freebies - everything a fan could wish for. We had so many news vans parked outside, the mall demanded to know what was going on. We had informed them of the event, but they couldn't conceive of so much attention because of a book and thought that there must have been a murder, at minimum, to have caused all that insanity. We also sold in excess of 1500 copies in under 45 about a marathon!! The maintenance crew threatened to quit the next morning when they saw the condition of the store.

My Community Relations Manager is thrilled because he's got the local weatherman coming to deliver the news from our store....not sure of the connection - "we've got rain....and HARRY POTTER!!!" - but he's thrilled, and so's the weatherman, so I say go for it.

I read all of the books, and they are a great read. I'm excited to read the next release....but can I be forgiven for wishing this was over already? My 'move' to another store will be delayed until after the event (hmmm....I'm too sick to run a large store, but not too sick to plan and run an event that, last year, produced more than a blockbuster movie's opening week-end for the company? That's company-wide results. Oh - THAT'S right, my boss doesn't want me to miss out on the 'fun'!)

I'll have to post after the event....if I survive it!

Saturday, June 11, 2005

It's a Dog's Life

I took a sleeping aid last night - my attempt to fight off the effects of all the coffee I drank to expel the 10 bottles of fluid forced into my system during the IVIgs. I was happily drowsing at 7am when something brought me to full attention.

That something was the cold, wet needle nose of my dobie, poking its way into my nice, warm and DRY neck. What the hell?? Oh - that's right....I exist simply to provide sustenance. I rolled over (yippee! this is progress from a month ago!) to see all three dogs looking at me expectantly. Considering one is completely blind, this tells you just how seriously these dogs take feeding time!

Sooo - I get up to start my day. First, pop those pills (thank God for straws - I'm a baby when it comes to swallowing pills). Second, get that coffee going. Third, feed the dogs. I know, I know - it's selfish of me to make them wait, but it's all about the timing.....waiting for the coffee gives me a valid reason for standing guard during the feeding process to ensure no one tries to move on to the next bowl. All three generally are not very good about sharing and brawls are likely to break out.

I wonder what my life would be like without the dogs? My mother is convinced they are the reason for my perpetual state of single-hood. If only I didn't have to rush home after work to take care of the dogs....what? I could haunt the singles bars?

There is something about coming home to the music of those dancing nails on hardwood floors. They are just so damned excited to see me. Ok - maybe they are excited knowing food is on its way. But still, who else is going to erupt with exuberance every time you appear? Who else is going to snarl to protect their place by your side in bed....ok, well, I've never met YOUR husband/boyfriend/partner. Who else is going to interfere with your computer time by placing their head directly on your keyboard in an attempt for attention? Who else is going to convince your neighbors that you run a dog-fighting ring in your backyard because their play is so loud? Who else is going to convince possible burglars that this is NOT the best place to try, despite the fact that their response to strangers entering into the house is to hide under the nearest bed? Who else is going to mud-wrestle, then merrily trot inside to share a little love before heading out again.....good thing I have a working washing machine!

I love my dogs, despite their lack of manners. I am a very bad dog-mom ---I haven't trained the most basic of good manners. It just doesn't phase me that they climb up beside me on the furniture, or hang out in the kitchen when I cook. I don't care that they stare at me as I eat, following every bite with laser-like precision. They LOVED it when my niece and nephew would visit. It was like feeding time at the never knew when something edible would hit the floor. I'm sure they think my niece and nephew are minor deities....what else would explain the manna-from-heaven?

All-in-all, they make great roommates. So there's a little (ok - a LOT) more cleaning involved, but they don't talk, love to snuggle, share their exuberance for life freely, don't care what I watch on TV, don't borrow my books....and, best of all, they love me. Or, at the very least, they love their food-provider.

*sigh* gotta love that dog's life......

Friday, June 10, 2005

Great news!!

I went in for my second day of my monthly IVIg treatment today feeling very nervous. It was a brand new nurse who would be monitoring the treatment, and after reading some of the horror stories from others on the TMA website I was concerned that having a newbie might result in a bad nervous, I decided against taking the Tylenol and Benedryl that is recommended, as it usually put me to sleep. Adding to my nervousness was my regular nurse who, the day before, had advised me several times to 'make sure they get someone from GI to put in the IV if she can't get it' (my veins are notoriously hard to find some days, and it HURTS having someone fish around in several different spots before finding one)...... Well, she got it on the first try, and even got it further down on my arm, leaving me free to knit. It can be a killer sitting in a small room with nothing to do for 7 hours!

As I sat there, feeling rather sorry for myself that I was stuck for all those hours and ruminating over the track marks that were beginning to make me look like a drug-addict to the uninformed, my rheumy's assistant came rushing into the room. They had already gotten my blood tests back from the day before and my new CPK levels were at 150!!! Remember, normal is considered at the 20-400 range....or maybe it's 40-200......In any event, 150 was great news!

Woo-hoo!! I was in shock and didn't get nearly as excited as Sharmone felt I should be. As she left the room, she told me to call my mother or she would. Having gotten to know my mother during the time she spent with me earlier this year, she knew that my mother would give her the reaction she was looking for!

Now, the trick is, can we get my body to maintain this without the drugs. Don't know if it was the prednisone, the methatrexate or the IVIgs that got us was probably my rheumy's "throw everything and the kitchen sink at it" approach, but it left me in a far different mood to wait out the remaining 4 hours of my treatment!

And yes, I DID call my mother right away, and yes, she DID have the reaction Sharmone was looking for. The nurse heard it across the room! Apparently, she burst into tears when she told my father. Then informed me on my way home (we're phone buddies when I'm stuck in traffic) that I am responsible for all her emotional upset this year, and it's driving my father nuts. LOL!

Thursday, June 09, 2005

First, kill all the lawyers....

All right, I don't really mean that.....really. I got into an interesting discussion today as I was sitting in the infusion room at my rheumy's office for my 7-hour treatment (leaves lots of time for conversation with others who drift in and out for their enviable 2-hour treatments) regarding tort reform.

Have you ever gotten one of those letters that come with a check for $.27 that informs you that this is your payout for being a party to a class-action lawsuit against _______? You were probably surprised because you never opened the junk-mail-looking letter that was sent informing you of what to do if you chose NOT to be a part of the lawsuit. Hey - thanks for the $, who is going to pay for the $20/month increase in my fees to ______ that came after the company paid off the suit, most of which went straight to the lawyers?

I read an interesting article recently from a man whose basic premise was - who are YOU to tell me I can't take Vioxx? His point was that HIS choice was near-certain death at a relatively young age without the medication vs. possible illness/death with the medication somewhere in the future. Was anyone else disgusted by how quickly the ads for attorneys hit the airwaves when the possible side-effects were discovered?

Why do so many people feel life owes them a smooth deal? I once had an interesting discussion (or maybe I read it somewhere.....) about the different approach to life Americans take vs. Europeans. The point of this party was that while Americans had a very hopeful approach (of COURSE I can be happy and successful) Europeans had a more fatalistic view (I'm stuck with what life has handed me.) One of the perspectives this individual was offering was that the hopeful approach wasn't necessarily all that great because of the disappointment that can come when happiness doesn't get handed to you. I also like this gem, which I attribute to my father: "Who told you life was gonna be fair?"

It is astonishing to me what lawsuits have done to our society. From expensive medications, insurance, etc, etc.... Do we need to have consequences for irresponsible acts? Absolutely. Do they need to be in the form of millions of $$ because someone was too stupid to think that putting a cup of hot coffee between their legs in a moving vehicle was a bad idea? Where do you draw the line? At what point do we expect some accountability from the individual to make good decisions, or to live with the occasional curve ball life throws at you. Sometimes this curve ball is due to an oversight of someone else. Haven't we proven that making that individual/organization pay $$ is not a completely successful way to prevent it from happening in the future? That maybe this approach does more harm than good to the people it is purporting to protect or avenge?

I could sue my company for forcing me to move stores....their approach was both unfair and most likely illegal. What, in the long run, would this really gain me? I still have a job. A job I love. My pride has been hurt - is this what the legal system is really there for? There are a few out there that seem to watch for that chance for the big payoff, and we're the ones who really do the paying. Now, it would definitely be a different story if my illness actually cost me my job or a loss in pay for no other reason than it's existence. But if my illness actually prevented me from doing my job, than who said I should be allowed to keep it to the detriment to others?

I see this sense of entitlement at work a lot in the younger employees....don't know if this is because they haven't been out in the 'real world' long enough, or if it is more signs of this dangerous direction in our culture. It is amazing to me how often I have been threatened with lawsuits when I had to let someone go for lateness. THEY can't seem to come to work on time, despite many warnings, yet I'M the bad guy for taking away their job? Did I miss the memo that we owe everyone a job?

What are your thoughts?

Tuesday, June 07, 2005

When Disaster strikes......

As I was lying in bed last night, fretting over my recent life 'disaster', I remembered that my family affectionately (I think) refers to me as the Disaster, it is not like a drama queen, I simply seem to attract various disasters. And I am NOT referring to the one such as happened yesterday.

I have lived through (7, 8, 9...) Yup - ELEVEN states of emergency. Review the news over the past 15 years, and just about everywhere there was a major event I was living there (all except Florida - I never could take the heat) My parents refuse to allow me to visit them in Texas during hurricane season.....I once visited them in Florida and a hurricane came a' callin'. They confidently assured me that hurricanes never hit their area of Florida, but became anxious and were happy to see me board my plane for New Jersey when the news reported that it was headed their way....My father jokingly commented 'Maybe it'll just follow you home'. Does anyone recall a few years back when that hurricane went straight up the east coast and took out half of New Jersey? I had just sold my house in preparation to move to Seattle, and was thankful that the new owners (who hadn't yet signed the closing papers) were understanding about the flooded basement. It totally skipped the area my parents lived.

Things seem to have calmed down, living here in Seattle - aside from that pesky little earthquake we had a couple of years ago. But for awhile there, I wondered if Mother Nature had a sense of humor where I was concerned, or was trying to send a message.

I have had earthquakes (WA, CA), fires (CA), floods (CA), hurricanes (NJ - though I think is referred to as something else once it hits that high and inland), riots (WA, CA), volcanic eruptions (OR), blizzards (NY) and even had a tornado touch down a block from me while I was living in NJ.

I learned something interesting from each of them:

  • When you are awoken at 4am by a freaked out dog and a violently shaking bed, don't automatically assume demonic possession unless your head really does start spinning around while you spew your dinner of pea soup you don't remember eating.
  • Even if you are in a bookstore surrounded by tall fixtures just loaded with items waiting to fly off and hit you, STAND BY THE WALL - there are all kinds of heavy things in the ceiling that can cause a great deal more damage. I only have pictures - wasn't there at 4am, but they are astonishing.
  • If the pendant fixtures are swaying - no big deal. If they are bouncing, go for cover
  • Keep a battery operated TV - watching the news anchors duck for cover under their desk during the aftershocks is great entertainment for you and your neighbors while you await daylight to assess the damage.
  • Don't assume just because you don't have much damage (this was major earthquake #1, #2 had me eating and drinking from tupperware....not to mention moving away from CA) that it wasn't major. All it takes is a phone call from your mother asking if the Golden Gate Bridge really did collapse (it didn't) to show you that where you are in relation to the epicenter has a big impact (no pun intended).
  • It takes a LONG time to reorganize 12 bookstores worth of product that has been tossed to the floor.


  • They are really, really scary
  • They hit fast
  • They cost you your last chance to convince your LA friends that camping can be fun. I still don't know why those girls couldn't see the humor in driving at full speed down a gravel road in my ancient Toyota with dozens of emus racing past us like a scene from Jurassic Park while fires raced down the mountains in our direction. The emus came from a farm in the area and were let loose not long after the helicopters arrived to start the evacuation.


  • They are a pain in the butt, and I am very lucky that I have never had to face what the mid-westerners frequently do


  • No matter how limited your funds DO NOT move into an apartment right off Hollywood Boulevard. The thieves really like all those sex shops.....
  • Do not assume that because the store you work at is in Beverly Hills that the riots won't strike you.
  • When the riots DO strike your mall, do as the nice security folks ask and evacuate immediately do NOT try and stick around to secure the funds and notify your corporate office.
  • DO fight back - in the malls, its just the mall rats taking advantage of the excitement and I found throwing large books and lurid curse words worked to drive them back long enough to close the gates.
  • Head for East LA - rather peaceful lot out there, as my former boyfriend was able to show me once I got past the mess in Hollywood. Aside from the machete-wielders trying to protect the firefighters, most of the neighborhood was enjoying backyard parties.
  • If you work in a store in downtown Seattle - offer a place to relax and free food/beverages for the ensures that they park their nice, large vehicles right in front of your store while those on either side get demolished. Not, by the way, due to the negligence of the hard-working police force.


  • Those stupid dust masks are hot
  • The ash takes the paint right off cars
  • My dad can make really cool art with the ash


  • You are supposed to get up frequently in the night to shovel your walkway and around your car. No one told me this, and it resulted in me shoving my poor dogs out a window for their morning constitutional. After I finally shoveled the way to the door (I climbed out the same window and got an amused neighbor's help) Heidi took to doing her business right on the stoop, where it promptly froze. Made for an interesting welcome mat.
  • Shoveling off your car is just a aren't actually supposed to use the shovel ON the car....good thing it was a company vehicle ;-)
  • Do NOT assume that this must just be normal for that part of the country and try to drive to work. The first time a tractor-trailer jack-knifes and barely misses you and you return home to a message from your boss asking if you have lost your mind will convince you that blizzards are a big deal no matter how used to snow the area's residents are.


  • When the skies turn green and the tree in front of your house goes horizontal, assume the worst and go for the basement. You truly don't need to call your mom for confirmation of your suspicions, particularly when she responds to your inquiry of whether it was really possible to have tornados in NJ with an unsympathetic 'well, YOU live there, so it seems likely'.

Monday, June 06, 2005

The boom finally fell

Today I had "The Talk" with my boss. The talk involved her outlining all the reasons she felt it was in my best interest to not be running one of the top stores in the company. Despite the fact that I had no physical limitations any longer (at least, none that affected the job) and that the store was progressing, she felt that it was too much for me to handle and that it would be better for my development and 'lifestyle' to be in a lower volume store.....wait a minute, development? LIFESTYLE?? I've been in retail management for 13 years, and seemed to be doing just fine until my diagnosis and the 6 weeks I needed to use the scooter to get around at work. Maybe she's referring to the development that she actually said she didn't have time to offer every time she canceled or delayed or cut down a day's visit to less than 3 hours. Or maybe she's referring to the fact that she offered me the demotion back when I explained the diagnosis and I turned her down. Clearly, she feels my decision-making needs development.

It was utterly fascinating to me to hear how exhausted I looked and how worried she was for me.....I wondered if it had ever occurred to her that it wasn't exhaustion but tension she saw on my face.


I am completely sympathetic to her concerns. It IS an important store for the company. But dammit, couldn't she have supported me these past couple of months instead of adding to my stress level with her anger and frustration every time we saw each other and I declined to give up my store? I knew this was coming.....even have reams of notes that would win me the case my mother would love me to file. But, you know, aside from the pride factor of being demoted I still love my job and don't want to risk it. Where would I go from there? The new store is closer to home, and they didn't change my salary (a small and petty thrill of mine, knowing they are paying premium for a small store manager). The biggest stressor in my life (my boss) would no longer be a weekly factor.

It just kinda sucks, you know?

Maybe blogging should be recommended as a form of therapy. Anyone reading, thanks for 'listening'!

Sunday, June 05, 2005

Can you help me find.....

I love my job - I really do. And I love my customers, my employees....they provide me with never-ending enjoyment.

And some days, they all just drive me crazy. I would love to blame my occasional pissiness on the prednisone, but I'm afraid I need to be honest and admit to PMS. I was called in early to work by a frantic department manager. My assistant had gone home ill, three other employees had called out, the opening barista was an hour late to open the cafe and the system was down. The computer system going down in a bookstore truly is a panic-causing event when at least a third of the customers' questions begin with the words "I'm not sure of the title, and I don't know who wrote it but it's really popular and has the word _____ in the title". Or, in this case, it was simply "the woman who is the new Martha Stewart....there's a woman with a straw hat on the cover and there was a full-page ad in the NYTimes."

I came in to smooth rough waters, and my first customer asked me my all time favorite question: "Where is your non-fiction section?" This question never fails to amaze me. I always try to respect the fact that ANY bookstore is intimidating to the majority of the population. The sheer number of titles is overwhelming. It is no reflection on level of literacy, intelligence, etc, etc. But from my first day working in a bookstore more than 12 years ago I have always struggled with how to answer this question without sounding snotty. The first response that pops to mind is inevitably "Everywhere fiction is not".

This led to remembering other VERY memorable the gentleman who kept asking for a book called Roger's Treasures. I tried by title, key word....nothing. I finally asked him who the author was, and he responded "you know - ROGER - he wrote it". Frustrated, I asked what the book was about. The response? It's just a book with a bunch of words that mean other words......Ahhhh - Roget's Thesaurus? Success!

When I lived in southern california my frequent customer debate came with some of my latin customers who would come in for Tequila Mockingbird. Nothing would convince them that the book their child's school had assigned was actually To Kill a Mockingbird until I would offer double their money back if I was wrong....that worked until some sadistic author actually WROTE a book called Tequila Mockingbird.

When I lived in Virginia I had a woman come in asking for a "dot book". Confused, I asked her if she wanted a general puzzle book that included dot-to-dots? She looked at me like I was a moron, and her friend spoke up: "No, honey, she wants the DAH-ET books". It finally dawned on me she was asking for diet books. Talk about language barriers! I really did feel like an idiot! LOL

When I lived in Washington, DC I had a very elegantly dressed woman (I'm sure she was some diplomat's wife) come in and ask for the Tale of Pooh. I asked her if she was looking or a particular tale, or just a book of tales. She sneered at me, and spelled out TEE-AY-OH...TAYO OF POOH. Oh, I said, the Tao of Pooh? She rolls her eyes and repeats TAYO of Pooh (obviously this lowly book clerk didn't know how to pronounce tao properly). I resisted the urge to ask her if she would like the Tea of Piglet with it and simply got her the book.

Having lived in several different areas of our great country, I can attest to the fact that the language barrier is alive and well, and has everything to do with accents! :-)

Whew! Sorry for the rant. Today just got to me. I tired out early, which always frustrates me. I wind up limping around the store assuring customers that it is no problem to take them to their book....they are trying to be helpful, but I just know they won't be able to find it easily in that maze.

I'll just go snuggle with Tasha for awhile and hope for the sleeping aids to kick in quick tonight....;-)

Due to popular demand

Due to popular demand (several emails from my pals at The Myositis Association) I am adding information on helpful tools:

The sock-puller-upper (EVERYONE wants one of these!) - This came from - click on dressing and grooming aids

A can opener to die for - this one removes the seal so you aren't using so much muscle to punch through the tin: Item Number K5469 on

For more grooming aids: The Body Shop has a number of items I recommend (I used to work for them, but this truly doesn't bias me, I simply know the quality is worth the reasonable prices)

1) a body towel - this is fabulous in the shower - you can hold either end and use it to reach your back, feet and everything in between. It is a light strip of exfoliating cloth. Simply put some soap on, whip it around till you can grip it in both hands (don't worry - no one's least no one at MY house!) and you can work it down the length of your body.

2) Tea Tree oil - great for fighting the prednisone acne. Kills the bacteria without drying the skin and causing further irritation. I simply work drops into the skin anywhere I have acne irritation.

3) facial sponges - these came in handy when I didn't have the strength to use my hands to wash my face and didn't want to use something as rough and irritating as a washcloth. Makes rinsing easy, too. Probably more useful for those of us who are slaves to fashion and insist on wearing make-up.

4) hair towel - VERY light and absorbant.....great when you don't have the strength to use a bath towel to dry your hair. It is light enough that you can rub it back and forth, or simply use it turban style.

If anyone who happens to visit this site has other recommendations, please add them in the comments area! Or email me, and I will add to the list.....

Saturday, June 04, 2005

Thank you, aimless forest

visit this site to meet the woman who was such a help to me when I first learned of my diagnosis. Her site also has a lot of great specifics on the terms relating to this disease:

Friday, June 03, 2005

Tasha - my patient lever for getting in and out of bed, and occasionally off the floor! Posted by Hello

Mom and Tasha, snuggling Posted by Hello

Joey, just hours before the vet came to put him to sleep. He's the golden in the middle Posted by Hello

Teddy - better known as Terminator Posted by Hello

Heidi - my blind 12 year old golden-corgie mix

Posted by Hello

My Story

Hi! My name is Siobhan, and this is the story of my experience living with a chronic disease……


I am often described as a Type-A personality. Focused, driven, goal-oriented, impatient and as temperamental as you might expect of an Irish-Italian with just enough Danish thrown in to keep me manageable. As of July, 2004 I weighed in at 135lbs, 5’2” tall. While I did not make exercise a part of my regular regimen, I worked in a three-story bookstore that kept me quite active, as did my second favorite hobby of ‘home improvement’ (my first favorite hobby being reading!) I loved to tinker around the house and had installed doors, windows, new countertops, refinished hardwood floors, painted the interior, etc all on my own. My brother was living with me and my four dogs (greyhound, Doberman, 2 retriever mixes) in a single-story house, and I had just been promoted to the position of Store Manager of the third largest store in my company.

I have always been healthy, but was also known to ignore signals my body would send me indicating further attention was needed. One example – I once had a cold that I refused to go to the doctor for, despite how debilitating it got, because I just knew I would be told it was a cold and there would be nothing they could do for me. At one point, I remember coming out of a coughing fit to find my brother and a friend leaning over me debating calling 911. I grabbed my brother by his collar and threatened to strangle him. I seemed to kick the cold a week later, then it returned. I finally went to the doctor, who informed me that what I HAD was walking pneumonia and should have been in the hospital, but what I currently had was a cold and there was nothing he could do for me……what is that Alanis song – Ironic?

So in August when I started to have some minor tingling in my hands, I dismissed it as coming from back spasms. In September I attended a national conference where the tingling progressed to numbness and I was informed by my roommate that I must have been a truck-driver in a former life as the pain at night caused some pretty colorful sleep-talking. When I returned from the conference I saw my doctor and asked for muscle relaxants to relieve the ‘muscle spasms’. During this time I also stopped wearing rings as they had become uncomfortable and was beginning to wear the same two pairs of shoes because the others seemed too tight. At any time did I connect the two? Of course not….. The muscle relaxants obviously didn’t work, so I went online to do some research and decided that I had Carpal Tunnel Syndrome. I informed my doctor of this diagnosis (oh, the arrogance!) who referred me to a specialist. The specialist tested me and determined that my symptoms were so advanced that immediate surgery was required as I had already lost some nerve function. He was bemused by how quickly this came on, particularly as there was nothing in my history to indicate a cause. Once again, it didn’t occur to me to mention the other difficulties I was having – including the swelling feet and stiffening back. Among the many tests they administered as a part of their diagnosis, two came back abnormal. One indicated osteopenia (great news when I had to go on prednisone!), the other was abnormal liver function. My primary care physician would go on to give me three more blood tests trying to figure out where these results were coming from. She commented that they read like I had been drinking heavily that morning. All I could do was raise my eye-brows and shrug….clearly, alcohol was not the cause of these results. She told me to return in January for another test to see if it would return to normal (by what means she was expecting that to occur is beyond me).

I had surgery on both hands in November (mustn’t interfere with the retail holiday season!) The relief of pain was immediate, but the swelling progressed, as did the stiffening of muscles. By late December I was using a stool to allow me to fall into bed, where I would lay in the same position until morning as I couldn’t turn over. Using the toilet became an Olympic event as I would need to rock back and forth until momentum would propel me off the seat. Since my toilet is directly across from the tub, I often wondered what would happen if I just kept going one day… about bathrooms being a common area for accidents in the home! None of this caused a major problem at work as I rarely sat. The only issues became my inability to use the stairs without needing frequent rests (not a problem – isn’t that what the escalators and elevators were for?), having to watch what I wore since my pants were mysteriously becoming looser leaving me in danger of giving those nearby a free peep show, and I became quite creative in my excuses for not being able to retrieve dropped items or to get a book for a customer from lower shelves. I told myself it was stress causing tight muscles and figured I would see a massage therapist as soon as the holidays were over. In the meantime, I used my very patient dobie as a lever to get me in and out of bed. Do I need to repeat – type-A personality?? My brother got a job in another state and moved out at about this time. He later told me he wondered if something serious wasn’t going on because I was spending so much time in bed and was not only not working on the house, but was barely even keeping it clean (tough to do when you can’t bend over). I guess my previous threats of physical harm stopped him from asking too many questions or offering his opinion on seeing a doctor……go figure.

I went to a massage therapist who told me she had never seen anything like it before. She couldn’t get the muscles to budge. At this point, the stiffness had progressed to my neck and jaw – I resorted to only eating cereal because I couldn’t get my jaw to open wide enough for anything else. In late January 2005 (holidays finally being over) I finally went to my doctor and dissolved into tears the minute she entered the exam room. I begged her for the strongest muscle relaxant medicine could provide – even offered to go into the hospital to receive it, and (ah-hem) bravely accepted the fact that it would probably cause incontinence, etc. ANYTHING to make the stiffness go away so I could eat, sleep, dress, etc again. Eyes wide, she asked me to perform a couple of physical maneuvers, and when I couldn’t, grabbed me and RAN down the hallway to x-ray then pulled 4 vials of blood. She informed me that I did not have muscle spasms, that she had 80 year old patients with better mobility (have I mentioned I was 35?) and that she thought I had a problem best handled by a rheumatologist. She told me what she thought it might be (I can’t remember the term, but when I looked it up online it said it usually occurred in those in their 80’s.)

I called around, and based on her referral was lucky enough to get an appointment with one for three days later. In the meantime, I finally mentioned to my family that I was having some physical problems, and would be seeing a specialist. As I have a nephew who was born with an extremely rare genetic condition, this prompted more concern from them than I was feeling. My sense was, well – as long as they know what is causing this, they will simply ‘fix’ me and all would be normal. After all, I had always been perfectly healthy, right?

Now enters the Rheumatologist – and after having read the experiences of others with myositis diseases, I recognize just how lucky I was to have made the appointment with this man. He already had my blood test results for the initial visit and began the assessment with many questions as to what I was and was not able to do physically. He peppered his questions with terms like ‘muscle inflamation’ and ‘muscle damage’. At one point I asked if this could be behind my Carpal Tunnel and swollen feet. After he recovered from his shock that I had had the surgeries (I’m sure it was only his professionalism that stopped him from commenting on my stupidity at not fully informing my doctors of ALL physical symptoms) he commented, and I quote, “What I believe you have is a disease and is very serious”….then went right back to the questions!! I sat there wondering, now what the hell does THAT mean? Am I dying? He finally began explaining Polymyositis, complete with diagrams written on the paper covering the exam table. He informed me that my ‘abnormal liver results’ were actually due to my muscles deteriorating and explained what CPKs were and why having levels over 15,000 were a ‘very bad thing’ (normal ranges 40-200, with 200 equating to someone who just finished a marathon). And thus began my education on an auto-immune disease so rare the majority of doctors are unaware of it.

In astonishment, I exclaimed “but, that’s what my dog died of!”. Instead of reacting like he was dealing with an idiot, he was actually interested in this bizarre factoid and asked if I was sure it was immune related. After $3,000 in vet bills from seeing a variety of specialists, I was VERY familiar with the diagnosis and was able to assure him that my golden retriever had suffered from muscle atrophy caused by his immune system and that he died at the age of 7 due to his allergy to the only treatment available…..steroids. THIS is what finally got through to me that maybe this wasn’t something that they were going to be able to fix and allow me to go right back to my old life.

I was placed on 60mg/day of prednisone and he explained that this dosage meant I would experience all side effects. I was somewhat less than thrilled to discover this meant my already round face was about to get rounder, hairy and I would finally experience acne. Oh, the joy. Then there is the osteoporosis. Even more thrilling was hearing that moodiness and episodes of anger would be expected (I wondered if my staff would resort to a rope, a blade or a bullet if I got any more temperamental). In the meantime, I was scheduled for an MRI and a muscle biopsy to confirm the diagnosis he was 90% sure of. He tore off the paper from the exam table at my request so that I could pass the information on to concerned relatives, and so began my habit of maintaining a personal copy of ALL papers and test results….a habit I highly encourage for others who need to keep track of medications, test results, treatments, bills, etc. I keep this all in a portable file and take it to all appointments. There have been a number of occasions where I was able to provide information that had not reached whatever office I was at.

One tip for anyone going in for an MRI…..TAKE THE VALIUM!!!! I have never been claustrophobic, so I rejected the offer the first time around and came out crying, sweating, swearing and swinging. I think if I hadn’t asked for it at the second session, they would have forced it on me for their own safety. By this time, the prednisone took effect by relieving the muscle inflammation giving me an immediate sense of relief – no more pain, no more stiffness. Yippee! This won’t be so bad! I assured my mother (who was already making plans to fly up from Texas) that this would be a breeze, and not to worry about me. I would handle this fine on my own, and besides, I hadn’t been able to thoroughly clean the house in weeks and was horrified at the idea of her seeing this (I actually called my sister-in-law in tears at one point begging her to convince my mother to not come. She responded with – she’s a mother, do you really think anything or anyone is going to stop her??) Facing the inevitable, I hired a cleaning crew who neglected to wash the walls in the one room I was most concerned about – the one my mother would be staying in.

Now, you must be wondering, why on earth is this woman so obsessed with cleanliness – washing walls, for heaven’s sake?? I had FOUR dogs and live in SEATTLE. Just imagine how much damage a wet, wagging tail can do – then multiply that by four. I decided to take care of the walls myself the easy way – I would simply use a mop to wipe them down, then paint them. After all, the rollers come with poles so I could do this all standing up with minimal effort. Well, that plan was just ducky till I realized that I would need to get to ground level to go along the baseboards. This was the first time I was going to ground level. Up to this point, I had been able to avoid kneeling, and hadn’t experienced any falls so I figured I would just use a stool to get back up. I got down ok, but then discovered I didn’t have the strength to roll to my side, much less sit up. I decided that since I was down there already, I might as well finish painting. Then I lay there contemplating being stuck there for 48 hours and having my mother arrive to find me laying like a turtle on my back. Somehow, that gave me the strength and ingenuity to use the bed, a very patient dog and a stool to finally get myself back on my feet.

One week on prednisone, and the last of the swelling was gone. I could now fit in my shoes and could wear my rings…..but it also took away what had apparently been supporting my muscles. I also dropped a few more pounds – I was now 20lbs lighter. Normally, this would thrill me except for the knowledge that it was muscle weight I lost….To my staff it appeared as though I went from being perfectly healthy, if a bit moody, to being on death’s door. I couldn’t walk without a cane, slurred my words, my head would list to the side and I could only walk a few steps before needing to rest and I had lost enough weight to appear rather frail. One of my department managers had been on vacation for a week – when she saw me, she burst into tears. I remember thinking, jeez – do I look THAT bad? Apparently, I did. Everyone, from my mother, my staff and my boss urged me to take disability. I couldn’t imagine doing so – what on EARTH would I do at home all day….watch TV?? At least at work I could continue to use my brain. This began a major battle with my boss who was understandably concerned about having the third largest bookstore in the company being run by someone who appeared barely functional. I won’t go into the ugly details, but this was one for the books as I am sure that the laws protecting those with disabilities are not often used to stay OFF disability. The tension between my boss and I is regrettably still present, and is a stressor I do not need but can't avoid if I want to stay in a job I love.

By this time it was late February 2005. I was still on prednisone alone while we were waiting for test results before proceeding with treatment. My mother (who is an amazing individual) arrived and went into action.
While I went online to research the disease, she went online and began ferreting out all sorts of tools to help me function around the house. These items can be found online for half the price you would find them in a medical supply store, and most of them came from QVC. For those who might find these items useful, here is a list in no particular order:

1) Gopher – I put one in every room in the house, one in the car and one at work. It allowed me to pick up dropped items, dress by stepping into my panties/pants then using it to lift them to within reach. (QVC or Walmart)

2) Sock-puller-uppers (don’t know the official term – got it through a catalogue)
3) A surprisingly attractive and easy to slide in bedrail (QVC)
4) Bed Wedge (for that lovely reflux I couldn’t control as the disease had also taken it’s toll on my esophagus) (JC Penneys)
5) Toilet bars (online medical supply store)
6) Sliding bins for cabinets. I could use the gophers to pull out the bin, then to pick up the item I needed (Lowes)
7) A scooter (not covered my insurance, unfortunately) that allowed me to get around at work…..and enabled me to NOT go out on disability. (you can get one of these on for under $1000 or on loan from some MDA chapters)
8) Silky ‘granny gowns’ for sleepwear that made sliding in and out of bed easier than my t-shirts had. By the way, this also led to my first ‘prednisone induced’ fit in the middle of Sears. Instead of anger, my side-effect seemed to be tears. I had completely balked at the idea of paying for the silk gowns available at Nordstroms (we had already been there and put me into sticker shock picking out some shoes I could slide into that were professional, but had rubber soles for better traction).There I was, crying over how ugly I thought the choices were surrounded by these shoppers who probably thought they were the height of fashion while my mortified mother urged me to just grab a couple. After all, who was going to see me in them? NOT a comforting comment for a single woman in her mid-30’s. I leave the rest of the scene up to your imagination.
9) “Help! I’ve fallen and I can’t get up!” service. I hated this one, and it proved to be a pain as I inadvertently set the button off twice causing needless excitement in the neighborhood when the fire department came to call. We finally got around the problem by placing the button inside a small ring box with the cord hanging out. For those who don’t live alone, I recommend a wireless doorbell, available at Radio Shack. You can wear the button around your neck, and if you fall or run into difficulty push the button to ring the bell and alert whoever else is in the house.

10) 4-prong cane (not as likely to drop it....after all, it's not much use if you can't pick it up!). Great for short distances. (online medical supply)
11) a wheeled walker with a seat and a basket - invaluable for shopping or longer walking distances. (Used my grandfathers...but I would go to an online supplier for this)

She also helped reorganize the house so that critical items were within reach. Unfortunately, it was at this time that I had to find a new home for my greyhound. He was the only dog too large to use the dog door and he had the regrettable habit of assuming every time I woke up it was time to eat and would make a ruckus. Anyone on prednisone knows that sleep is a real issue, and the issue became critical when my 2am restlessness meant not being able to go back to sleep. This was heartbreaking for me – I was used to rescuing dogs, not giving them up. My poor mother had to suffer the sleeplessness along with me as the prednisone was giving me energy that led to me doing odd things at 2am. It drove her crazy - she knew I was supposed to be conserving energy, and there I would be in my glamorous polyester gowns spray-painting trim in the garage ... trim that I couldn’t even install in my current condition. Oh, well. It’s not like the paint splatter could make those gowns any less attractive…. :-)

While my mother surfed the web for useful tools, my web-surfing led me to a site run by a woman in my area who also had PM. I emailed her, and she became an invaluable resource. She referred me to The Myositis Association and recommended contacting the Muscular Dystrophy Association, as well as offering her own experience to help prepare me. It was her very warm emotional support that truly made a difference.


So – I now know what is wrong with me ------what next??

I went to the MDA whose neurologist confirmed the diagnosis and set me up with another doctor who was in charge of setting up the occupational and physical therapy. I would give you his title, but I never did figure it out. This guy was something else. I left my first appointment in shock and told my mother it was the first time I had ever left a meeting completely unsure of what exactly had taken place. All I knew was that I had appointments set up with people who were supposed to do something about teaching me to drive (where did THAT come from???), how to use my cane (again -?? was there a secret trick to it?) and (I hoped) one to help improve my flexibility, which he felt was at a critical stage – if not dealt with the damage would be irreversible. He was a lovely man – just the image of a brilliant, if absent-minded professor. He was so eager to ‘help’ that he actually acted offended that much of what he was ready to offer on behalf of the MDA my mother had already found. The one item we didn’t have that he felt was essential was a lounge chair with a lift. I was horrified – where on earth would I fit this huge chair that I would never sit in? Fortunately, his assistant told him there was a waiting list and when one came available my mother caught the call and was able to tell them to move on to the next name on the list.

The occupational therapist saw me once and told me there was nothing she could offer that my mother hadn’t already thought of. I was still able to drive, albeit very carefully as my hands couldn’t reach past the bottom of the steering wheel (I guess there are alternatives if regular driving is a problem?? Still don’t know what that whole ‘driving lessons’ thing was about). I began seeing a physical therapist who worked wonders on getting my jaw working again. She said if I had waited any longer it probably would have been stuck that way.

In the meantime, I was not responding as expected to the prednisone treatment (my CPK levels were remaining above 10,000) so my rheumatologist decided to go for broke and throw everything he could at me. He started by sending me to three days of Solumedrol treatment, which really knocked me on my butt. I started on Methatrexate injections and the first of 4 IVIg treatments. I was at my lowest point from a physical perspective during February/March. It was during these months that I had to rely on aids and struggled to even wash my face. I had one fever incident in the middle of the night that left me so achy the next morning that I decided to try a bath. An experience I will never repeat. At one point, as my 60-odd year old mother struggled to help me out of the tub as I slipped and slid about knocking my head on several occasions, she commented that she thought it would be me doing this for her – not the other way around. You learn quickly to lose your modesty when dealing with a chronic illness…….

I was fortunate that I had very few incidences of falling, but each were rather remarkable – and I don’t use that term lightly.

The first came at a time when my uncle and his girlfriend had come down to help with some of the house rearranging. The two of them drove 3 hours on several occasions to help- talk about family love! On this visit they brought their beagle with them. As I am a dog-lover, this would not normally be a problem. However, one of my dogs is EXTREMELY dog-aggressive. Example -I was walking him one day and a neighbor’s rottie got loose and came over to visit. Teddy kicked the crap out of him. I have never walked him again. This little fart will sit there and wag his tail looking as friendly as can be until the other dog gets within reach, at which point he will launch an all-out assault with no warning. I blame this on his months living on the street, probably fighting for food. When I first brought him home he was incredibly thin and he actually chewed his way into the plastic bin holding the dogfood eating so much he had to go to the vet…..he couldn’t even walk! He is the sweetest thing with my dogs, kids and adults…..but NOT with strange dogs.

So, the poor beagle got tied up out in front of the house all day, while Teddy salivated at the gate. My mother left to get pizza for everyone, and somehow Teddy slipped out and immediately went for the beagle. My brain fired “RUN” and my body responded “Yeah, right!” and I wound up flat on my face on the garage floor. My poor uncle was torn between helping me and saving his dog. I kept yelling “Get Teddy!” so he went to help his girlfriend pull Teddy off their dog, upon which time Teddy made a dash for the street where some poor woman was walking HER dog. A neighbor took a shovel and began hitting Teddy (which I fortunately couldn’t see, still being face down on the concrete). While all this was going on, my mother pulls up in my car, spots Teddy and somehow gets him back in the house (I have no idea how that happened). Next thing I know, I have a crowd standing around me debating how and whether they should get me back on my feet. While they are debating, the same neighbor with the shovel walks up, grabs me under my arms and just plops me on my feet then leaves. I’m in hysterics worried that Teddy had harmed one of the other dogs (he hadn’t , and neither did he suffer any injuries from the shovel – I swear I should have named him Terminator) while my family is completely freaked out over my broken glasses, black eye and bruised ….well, bruised everything. With this disease, when you fall its like a cut tree – you just go straight down, being unable to brace yourself in any way. They were also alarmed because this was the first time they were able to see just how limited my movements were. I wasn’t even able to turn my head, much less my body. All in all – not my best moment.

A few days later, I was leaving for work at 4am, Mom was still in bed and I tripped over some yard waste a neighbor had left after helping clean some of the winter debris. This time I fell on my back. After calling for my mom several times with no result, I thought to push the alarm button on my keyless car remote. I did this several times. My mother didn’t respond – she thought I was doing it accidentally. However, my poor neighbors did. The same neighbor had to come out and get me back on my feet. I thanked them with as much dignity as I could muster, and took off for work. I planned to arrive at work and hour before the rest of the staff to catch up on some paperwork. When I got to the doors, I dropped my keys…this led to the debate of whether to wait an hour for more people to show up or to try and retrieve the keys using the door handles as a support. Would it surprise anyone to know that I chose to try and retrieve the keys? The next thing I know, I am on my knees clinging to the door handles unable to get up OR get the keys. I began calling for help hoping SOMEONE might be at the center at that early hour. Finally, a man approaches. After spending a moment contemplating the picture I made – a strange woman apparently worshipping at the portals of a major bookstore, he asked what the problem was. I explained that I had a condition that led to the “Help! I’ve fallen and I can’t get up” syndrome. He got me to my feet and asked me if I thought it was a good idea to be going into the store alone with my condition. Embarrassing, but true… Perfect strangers have better sense than I do when it comes to this disease.

My final fall was actually an exciting experience for me. It happened after my mother had returned home (much to my father’s relief) and I had been on all three treatments with promising results. I got up at 2 in the morning to answer the call of nature and promptly fell over poor, blind Heidi who had inexplicably decided to go to sleep stretched across the hallway.

I landed squarely on my forehead, which left me with a fairly spectacular knot that started between my eyebrows and extended to my hairline at each temple. But the exciting part was that I was able to get to my knees and crawl to a chair and get to my feet. THIS was an accomplishment! Forget the bruise – I got to my feet all by myself!! Time to celebrate! Believe me, this was something to hold onto when I went to work and had to watch employees struggle between hysterical laughter and sympathy. The knot remained and the blood pooled around my eyes. I looked like a Klingon who met up with the three stooges and got the double-eye poke. Between the black-eyes, the Klingon forehead, and the moon face I had to stay away from customers (particularly the children) for a few days. I was quite a sight.

It is now June of 2005. I am currently on 30mg/day of prednisone, methatrexate injections, have had 2 IVIgs and my last CPK came back at just under 2000. I take vitamins C, D and calcium; prevacid for the reflux; actonel for the osteopenia/prednisone side effects; folic acid and a couple of other supplements as well as something to help me sleep. I no longer need aids for dressing, walking, getting up or down from the floor, etc. I still tire if I push too far (can’t seem to avoid those 10-12 hour days some weeks) but am hugely thankful for how quickly the treatments took effect. Long-term treatment is still in question. Perhaps I will update later……..

Long post, but I know how valuable it was for me to hear of others' experiences with this rare disease and hope that this might provide some insight for anyone newly diagnosed.