Life with a Myositis Disease

I suck at blogging!

2010-02-28T18:56:00.003-07:00

I admit it - I just don't have the focus to maintain this blog!!

I figured it might be time for a *small* update, for anyone who still checks in periodically.....

My health is stable and my insurance finally gave out. I hit the million dollar lifetime limit, so no more Ivigs. The good news is that I seem to be doing fine on the prednisone alone. Maybe I WILL be one of those fortunate enough to hit remission in the first 5 years!

I AM A MOM!!! I adopted my son and daughter last August - yippee! My daughter (now 13yo)has been giving me a run for my money (and sanity!), leaving my mother in fits of hysterical laughter. I love her, though, and just keep dreaming of the day when the hormonal insanity ends and a normal human being asserts herself.....it will happen, right? RIGHT?!

My son is moving right along. His birth mom comes down with her parents every couple of weeks to visit. I haven't heard from his dad in awhile - apparently, he has a new girlfriend and wants to 'move on' with his life....my hope is that he will still stay in contact.

I am still fostering - just sent two brothers to live with their grandmother, and the next day got a call to take an adorable 3yo girl. Up until this point, nearly all of my placements have been boys. My daughter and 2 infants were the only girls. So, I dragged both toddlers to the store with me to pick up appropriate clothing (like, something warm??? Why do I keep getting kids in the middle of winter dressed in shorts and T's???) and a few girl-type toys. I discovered that it is so much easier to find clothing for little girls!

I am enjoying fostering, but have been being hit with some pretty bad stories lately about the foster care system (percentage of children in care who are abused by the foster parents) and from former foster children who have aged out.....it seriously leaves me ill to think of people being given traumatized children to care for just to turn around and add to their trauma. I just don't get it.

I've been emailing with a young woman whose blog I was referred to.....she is one of those kids who aged out of the system, and her story is truly a horrendous one. But, you know, she is amazing. She is so bright, and has such a way with words - lots of talent. I hope to stay in contact with her (at least for awhile) and watch her grow and, hopefully, heal just a bit.

Aside from the two new (forever) kids, the household has expanded in other ways....we are now a household of 2 (sometimes 3 or 4) children, three dogs, 2 cockatiels, 1 parakeet, 3 fish and one snail...... I just keep thanking my lucky stars that I am employed, reasonably healthy and have been blessed with two wonderful children!

I'm gonna be a MOM!

2009-04-01T18:08:00.002-07:00

Wow! Too cool - people (besides my Mom) apparently still read this blog! It is not nearly as interesting as some I have found (for a real laugh, check out http://afostermamaslife.blogspot.com/).....

I DO have some fantastic news, though! It seems very, very likely that I will be adopting both my current kiddos! N is 12yo, very bright, very active and is giving me a run for my money! T is 14mo, a bit delayed-but-catching-up and also giving me a run for my money.

The trouble now is having patience. Both children's families have had their rights officially terminated (though T's did this voluntarily), but the courts give them 3 months to contest. During this three month period, I have to:
1) update my homestudy
2) have both children get another physical (?!)
3) get a psychological assessment done for N
4) hire an attorney
5) go through presentation meetings for each kid (this is where a panel reviews my homestudy to make sure I am not a nut.....or, at least, not the kind of nut that would harm children)

At the end of the three months, I will be able to petition the court for adoption. I have already contacted an attorney, who assures me he can set a date as soon as he gets the ok. It would be fantastic to do both kids at once, but since they are from different counties I know I will wind up with two different dates.

Still hard to believe......4 years ago I needed help getting off the toilet, and now I am about to be the Mom of two kiddos!!!

Life is good.

Wow! It really HAS been a year!!!

2009-02-12T20:16:00.002-07:00

So, does anyone besides my Mom even look here anymore?? Probably not, and it's all my fault for getting so caught up in the foster care forums.....in my defense though, they really are strangely compelling. If you ever feel lost, frustrated, completely out of touch with your kids - visit a foster care forum. The stories there will make you thank your lucky stars your life is so good!

I have been fostering for about 2 1/2 years now.....I think. Maybe longer? I don't even know anymore. I have had (at last count) THIRTEEN children in my home. And you know what? It's still standing!! Of course, my cream leather couches now have lovely scribbles in black sharpie, I have NO grass left in the back yard, the livingroom has been taken over by toys and the garage with boxes of 'stuff' from parents who seem to view cockroaches as a fact of life. Oh, and my car? Poor thing will never be the same. I used to be amazed that my OCD sister-in-law's car would have a mess inside. Now I understand. I swear, there is NO WAY to prevent every little crack and crevice from accumulating crumbs, vomit, juice, urine.....hmmm, I guess I can't blame it all on the kids. No - NOT ME!!! Dogs! all those strays I grab off the street leave their (ah-hem) marks, as well.

So - thirteen placements later (fourteen if you count the one that came back for round 2) and I am finally starting to feel like a parent. Not enough of one to realize that my DAUGHTER was not the most reliable source for determining when school resumed (so she has ONE unexcused absence - get over it!) but a parent nonetheless. My current two kiddos look likely for adoption, and aside from being ecstatic, a part of me is sad. You mean I can't keep trading them out for newer models?? It has been a lot of fun (aside from a few memorable placements) watching all of the different personalities wade through my home.

Of course, NONE of this has ANYTHING to do with the purported theme of this blog.....Myositis. So. Here is my bow to the theme - I am doing fine.

That is my stock response.

I am doing fine.

I am still on all meds, which doesn't bode well for the remission-within-five-years hope I have held. But, fat face aside, I seem to be holding up. It is looking like I will be on Prednisone the rest of my life (ugh!!!) but maybe, MAYBE I might be able to cut off the IVIgs. That would make my insurance company happy!

I have three dogs, a job (which is saying a LOT these days), two kids that may be here to stay, a home......

I am doing fine.

I am doing GREAT!

Ok - Maybe hectic DOES cover it!

2008-01-03T21:23:00.000-07:00

Life continues to be a bit hectic - I had the day off today, so dropped the boys off at daycare and went to get my monthly bloodtest (2 months late!). On my way home I witnessed a serious car accident and wound up sitting with one of the victims in his car keeping him from passing out before the ambulance got there. Poor guy - I used his cell to call a friend of his who was nice enough to call me back later to tell me he was fine....concussed, but fine.

I returned home to catch a quick nap before tackling the removal of the Christmas lights and all the fallen leaves in the front yard.

I went to pick up the boys and all three came home hungry and cranky today, so dinner was a marathon. J1 and M decided to 'have it out' over who's Mama I was - two 2yo yelling at each other "MY Mama" over spaghetti certainly added to the ambiance.....NOT!

I did have to giggle listening to them on the car ride home, though. J2 was sitting in the middle car seat with wide eyes listening to J1 say - well, I'm not sure exactly what he was saying, but it prompted M to respond with a very bored "not funny" over and over again. It was like listening to a bored teen sneer at his much younger brother

Oh! How interesting life has gotten!

Happy New Year!!!

2008-01-03T09:54:00.001-07:00

Wow! I haven't written in a looong time, but I have a great excuse - THREE TODDLERS!

So - here is my foster saga so far: M 2yo, placed 5/07 (still here); C 3do, placed 5/07 (adopted by an aunt 11/07); N 10yo, placed 8/07 (ru'd 9/07); J1 2yo and his brother J2 1yo placed 12/07 (still here). I still wonder if God is laughing at my fervent wishes to NEVER parent a girl (based on the hell I put my parents through) by sending me three boys LOL!

Life is good, if busy. Christmas was WONDERFUL as my parents came up to spend time in my madhouse.....poor things were exhausted by the time they left. J2 kept them hopping as he busily gets into everything possible. It was a zoo here with 2 birds, 3 dogs, 3 adults and 3 toddlers. Hectic doesn't begin to cover it!

The boys fell in love with Dad - poor Dad probably went home sore from all of the wrestling he did with them. M spent Christmas with his Mom, so we had the other two boys, who were very confused by the whole event. The most excitement they showed was when they spotted the fire in the fireplace!

M is due to return to his Mom in the next few weeks or so, but J and J are kind of up in the air. There is a possibility that they may be available for adoption.....I am having a difficult time with this as it is tough to protect your heart. I would love to adopt them, but am afraid to become to hopeful as this would make losing them devastating :(. I have done fine with my other kiddos as I pretty much knew going into it that they were all going home.....this is a little different and I am hoping to get more info (eventually) when I meet their CASA worker. For some reason, CASAs are much more forthcoming with info than Case Workers- IF they approve of you ;)

As many of you know, I tend to be rather reclusive at home.....fostering has certainly taken care of that! I have so many people coming and going that there are times when I feel more like a daycare! Therapists, CASAs, Case Workers, Case Managers, Auditors, etc, etc all have their scheduled visits to maintain. Yikes!

I am VERY fortunate to have the world's greatest neighbors - they are as involved with the kiddos as I am! Their daughter babysits on the weekends and holidays (I think I am paying for her first year of college!) and the parents come over to help and to spend time with the boys. It is wonderful to see all of the kids gain confidence from all these interactions with caring adults. J1 was so shy when he first got here, and now he greet adults and is very quick to tell me when he wants something!

I am hoping that the Christmas visit helped with some of my folks' concerns......right Mom?? I was tired, but still doing fine even with managing the store through the holidays and taking care of three active toddlers at home. One thing is for sure, they certainly give me something to focus on and look forward to each day! Much better than when I was just puttering around being bored at home.....

My Grandfather is due to go in for some surgery for cancer.....and the big DODO sent MONEY to us grandkids. While I appreciate both the money (foster stipends do NOT cover most kids' needs) and the sentiment, I do NOT appreciate the idea he is going into this surgery expecting to pass on. I am sending him some sharp words on that account - we would much prefer to have 'Great-Grandpa' with us for as long as possible, but I know he misses Grandma......

Well, this post was just to catch everyone up! Hope 2008 comes with many happy surprises!

Harry Potter....again?!

2007-07-18T02:48:00.000-07:00

Wow! How life has changed since my LAST Harry Potter launch!

We are busy at work, but life is even busier at home. It looks like C will be with me for one more month, then will be moving in with an aunt in another state. I will really miss her! She is very aware these days, and I am starting to see some small smiles. By the time she leaves, she will have a personality, making giving her back doubly hard! :(

M is doing very well, and I still don't have a date on when he will return to HIS Mom.......

I have to wonder what will be in store next, plus hope that one of these days I will foster a child that may become mine....

Heartbroken....

2007-06-04T01:08:00.000-07:00

I had to face a very hard fact today....my beloved retriever mix Teddy simply can't stay.

Both kiddos were down for a nap and I had Teddy on the floor with me hovering above him to shave his ears (guaranteed to cause a bit of anxiety) when one of my other dogs, Chloe came too close. Teddy snapped at her, missed and nailed me on the inner thigh.

I wound up bundling up both kids for a quick trip to the ER to get stitched up.

Most dogs learn how to give warnings....growl, nip, etc. Unfortunately, with Teddy's time on the streets, he never learned this lesson. Like pitbulls, when he bites he means it and if you are in the way (he NEVER bites people...just other animals) then you are looking at a serious bite.

I HATE this....most rescues automatically put down dog-aggressive dogs, and if I can't find a dog-savvy family to take him I could be condemning another poor dog to serious injury or death.

I am just sick - emotionally AND physically! I really love this dog.....but GOD - what if it had been a child in the way?!

Sick - I am just sick about this.

Meetings.....

2007-05-30T18:24:00.001-07:00

I met with my Case Manager AND the GAL for C today. I had hoped they could meet M, but he had a visit with his Mom today, which meant no nap so he was already asleep when they got here. My CM peeked in at him, though, so she could see his room, etc. It is heartbreaking to see how much he misses his mommy - he kept asking me when she was coming tonight :-(

Apparently, C's Mom has her first court date tomorrow....the GAL (Guardian ad litum) said it should be interesting to see if she shows. They don't really expect her to, but who knows?

Everyone seemed happy with the kids' placement, and they changed M's placement from emergency (very short term) to placement until permanency could be achieved through placement with Gma or Mom. In other words, he could be here for months!! I am fine with that, but I know my case manager was hoping for shorter term so they could place another child.....I think they are irritated that Gma is licensed but still won't take him simply because she isn't getting along with her daughter (M's mommy). On the other hand, I kind of question why they would place him with someone who kicked her own daughter out at 16!?

I am off to my own Dr appts tomorrow and will have C in tow, which should be interesting! LOL! I am hoping my Dr might be able to give me some direction in finding a pediatrician.....I really dread returning to the clinic I had to take C to. But, I guess it's better than nothing!!

First visit, first bath!

2007-05-29T18:11:00.001-07:00

First - just to update, I now have TWO foster kids. M is 2yo with a very young but earnestly trying mom. C is a little over a week old - she was delivered to me at 3 days old!! yes - this time when they called me I agreed to take an infant. Didn't think I would, but here I am!! They called me from the hospital needing a home asap. The poor investigator is new and was painfully eager to hand the baby over. C was born to a mom with cocaine in her system, but seems to be very healthy.....

And now - C had her first visit with her bio mom today....I was less than impressed with the case aid that came to get her - she was very brusque. I was REALLY irritated with she returned C with a nearly full bottle (after a FOUR HOUR stay??) and a request from bio mom to send a bib and bottle cap next time....BOTH of which were in the bag, along with diapers, wipes, a change of clothes, spare blanket, etc. Yeesh!

What bothered me most, though, was C's reaction after the visit. Not sure if she just didn't take to the 45 min travel each way or what but she barely slept all day, was irritable, gassy, cried a lot, ate a lot, etc. She finally seems to have settled down at 8pm! I have this secret little concern that bio mom may have tried to breast feed her (is that even possible a week after giving birth without having initiated feeding??) and thus passed on some of the drugs swimming in her system. Maybe I'm just paranoid??

On the plus side, her cord dropped off today so we were able to have our first bath! She smells so much better! It was really off-putting to smell her mother on her from her trip down the birth canal- blech!

I continue to learn....I can now use the restroom while holding a crying baby, can feed an infant AND a 2yo at the same time, have given up on hampers and just keep the lid to the washer up and keep tossing items in until it's full enough for a load, can translate more of what M is saying, etc....I have also learned a lot about AA skin and hair care. At first, when I was told to use baby oil with vaseline on top AND on the hair I thought it was nuts, but the recommendation has been repeated by everyone so I went for it and it worked!

M is having a great time with the dogs, and they are learning to ignore his occasional screeches (at first, they all ran for cover). He is also learning to keep his hands ABOVE his highchair tray unless he wants to lose whatever he is trying to eat to the nearest waiting mouth....well, YOU try keeping three dogs away from a feeding toddler! I couldn't put them out - there was a lightning storm!

M has been having a few temper tantrums and trying out sulking, but we seem to be moving past it by me ignoring him when he's in a snit.....the fits are getting shorter, thank goodness! I had to go to Sams to stock up on food - I can't believe a 2yo eats twice what I do!?! Wound up getting a bunch of paper supplies (he LOVES tissues), healthy snack foods (he has now decided apple chips are second only to bananas!LOL), diapers, and, for me - Prilosec! Oh, what a grand life I am living!!

When it rains, it pours - I have appointments with both my case worker AND C's guardian ad litem (GAL) tomorrow at 6:30pm. Should be interesting. If they stay longer than an hour THEY can give M his bath and get him ready for bed LOL! So far I have taken one call from my case-worker asking for an inventory of what each child came with (M= TONS of clothes, no toys; C - what the hospital put her in before she was delivered to my door)

I spent the day today on the phone....calling every pediatrician I could find in my area, and NONE were taking medicaid kids. Guess that's another wonderful government program that totally turns off the doctors....THEN I had to call the WIC office to set up an appointment for both kids (the formula alone could break the bank!). This took four phone calls as they kept screwing up the kind of visit. Apparently, the kids have to be certified first which means they have to come to this first 2 hour appointment to prove their existence....scary to think why these precautions are necessary! I am NOT looking forward to THAT appointment with an infant and toddler in tow! Say Mom - when was it you said you were planning to visit? ;-)

Finally, I am trying to reach the CCMS office to confirm funds for C's daycare - they came through in less than a week for M and I want to make sure they do the same with C. Can't wait for those stipends to start!! I think the red tape is tougher than caring for the foster kids!

Well, M is now asleep in his room and C and I are in bed in mine....time to catch what sleep I can before the next feeding!

I'm Learning!!

2007-05-21T12:49:00.000-07:00

I'm slowly picking this thing up!!

I figured out that if I told M I was stepping out of sight for a moment (ie - put wash in dryer) and what I was going to do, he wouldn't scream (duh!!) Sometimes, when he is feeling uncertain, we play echo by calling OK to each other over and over until I reappear.

I figured out that what I THOUGHT was him saying "I kick you" was actually him saying "I (want a) cookie" LOL! (I wondered about the kicking since he never followed up on it!)

I figured out that he is nearly potty trained......Whew!

I figured out how to go from one load a week to one a day in laundry and every other day in dishwashing.....

I figured out how to time it so that kid and dogs each have free reign of the house at different times.....

And M is learning! He is learning the enjoy the house, and now will march over to 'his room' to retrieve toys, into 'his bathroom' to play with the faucet (oops! gotta watch that one!) over to the fridge or cabinet when he wants a snack, etc....PLUS he has slept in his own room, in his own bed for the last two nights!!!!

Now, what I need expert advice on is vegetables.....He loves fruit, but since my fav veggies are salads, asparagus and greenbeans, and he either can't or won't eat them I am kind of at a loss as to what to offer......any culinary advice out there?? I need to go shopping and want to pick up some relatively sure bets since I certainly won't be eating the leftovers! LOL

A Day in the Life of.....

2007-05-18T22:11:00.000-07:00

A two year old!

Boy, am I learning fast!!

M was placed with me about five days ago, and the days since have been a whirlwind of locating daycare, dealing with paperwork, introducing M to the dogs, setting up visits with his Mom, etc.

He is tolerating my learning curve well, probably thrilled when I forget to do the whole teeth-brushing routine (oops!). We are still struggling with bedtime - he goes down just fine, but since he is used to sleeping with his Mom, he has a tough time being all alone in his new room.

I am learning some quick, healthy meals to cook! Great for me, but I think M could care less. I made him home-cooked chicken fingers the other night, and he proceeded to dip his peaches in the catsup and his chicken in the peach juice.....eeew!

I received another call today about taking an infant....I declined as I doubt I could find childcare for a newborn AND I am just starting to get this 'mommy' thing down.

It is truly amazing how much this parenting a toddler changes your life - I know, I know - duh! But I am referring to the fact that there is no easing into this through pregnancy and birth. One day I am driving home from work debating whether I want to stop by the store now or wait a few days. Now, I pass the farmer's market with a strong inclination to stop and get fresh fruit (M is devouring fruit faster than I can buy it!!) but I decide against it as M has already had a long day and is not in the best of moods. But, I can't wait too long as he needs more fruit, so I need to schedule that into our day tomorrow.

I am getting better at planning my time around his energy cycles - best time to do laundry is when he's revved up! I can move around and fold laundry while he runs like a crazy man around the house shrieking at his toys LOL! If I am NOT in the mood to spend time at the sink, I had best wait to fill the dishwasher until after he's in bed as he loves to 'help' by closing the dishwasher door after each item is placed inside.....etc, you get the idea!

He is getting better with the dogs, and vice-versa. Tasha still only likes him when he's eating or asleep; Teddy just watches him; Chloe thinks he's a toy just for her! Tomorrow I plan to set Chloe and M loose together to see how well they do.....I think my Mom thinks I worry too much, but I have this horrifying vision of trying to explain a dog bite to CPS (much less M's Mom)! The dogs did fine with my niece and nephew, but they were only there for short periods and are not prone to high pitched screeches or loud, flailing temper tantrums (at least, not around me.....my brother and sister-in-law could probably recount a few ;-) )

His latest funny maneuver? Sticking his face in the dogs' water bowl to 'dink' just like the dogs do! Oy!

Done!!!

2007-05-06T14:21:00.000-07:00

I am now licensed by the State of Texas for foster-adopt!!

Yikes! Now what??

I have gone through classes on an alphabet soup of disorders, medical conditions, emotional conditions, attachment, CPR, meds, etc, etc. I have spent HOURS on the web researching childcare, education, therapy options, etc.

I have set up a kids room.....just to find out what I really need is several pairs of clothes in different sizes as kids often show up in the clothes their wearing and nothing else. I guess I'll be hitting Target or Wal-mart on my next day off!

I am doing legal-risk, which means the children will likely be available for adoption as my interest is in adoption, not long-tem fostering. It is horrible to see how many kids are in the system and how few homes there are! In Texas they are so short in emergency homes, they are housing the kids in their offices, hotels.....

My hope is for 1-2 children in the 2yrs to 5 yrs range......we'll see what fate has in store for me!

Wish me luck!

Big step??

2006-11-22T11:55:00.000-07:00

You bet!

I recently began looking into something I have considered for most of my life.....adoption. My family did some fostering when I was a child, and my mom was fostered. I have always believed that if I wasn't married by the time I was 35 I would look into adoption. I am now 37, and the thought has come much more frequently.

I broached the subject with my folks and they freaked. They are concerned about my health, and knowing what I looked like when I first became ill I understand their concerns. But I have fantastic parents, and I truly believe that it would be a shame not to use some of those wonderful parenting skills that created the people my brothers and I are today to help some kids who haven't gotten what they deserve so far in life.

Am I wrong?

I am doing my research - I am looking into schools, activities, before and after school care, etc. I plan to be careful and allow only a small, young sibling group (the ones most hard to place as many only want one child) whose needs are in line with what I can offer. My health is stable, and as I don't plan to reduce prednisone so sharply in the future, I can be assured of no other relapses. My job is stable and is (fortunately) limited to 40 hours outside of the four weeks between Thanksgiving and Christmas.

I have a loving and supportive family that I KNOW will provide additional love and support to any kids I bring to the family....

So am I nuts?

I would LOVE to be active with a couple of kids.....have family dinners, do homework together, watch them in their activities. It would be hard. Particularly when you consider the baggage all of these kids come with. However, with careful partnership with a social worker I hope to have a placement in which my skills and life experience would be helpful and that their issues would not be ones overwhelming for a single mother. Knowing my tumultuous teens I have no doubt kds can be emotionally exhausting, but I am counting on my family for emotional support and my parents for the tips and guidance that will help keep things level.

For years, work was my outlet in life. As so many have presaged, I had to learn the hard way. Work will NOT give you back in the end. It is not designed to be the center of your life. I love my career and plan to stay with for as long as I am able (65, here I come!) but I no longer wish it to be my center. I have no desire to 'get out' and date....I have no desire to meet people for dinner and drinks or attend a party. I want to have an active home life. I want to build a relationship that will last into my senior years. I want to watch kids grow, develop and prosper.

Is that weird?

Help!

2006-07-25T15:57:00.000-07:00

I am trying to help raise funds for the MDA (you know - Jerry's Kids?). This is truly an amazing organization, and anything, any amount you could offer would be hugely appreciated. Just click on this link: https://www.mdaevent.org/ParticipantInfo.aspx?j=bc5d90fe-be79-40b2-9065-7cffe38b485f All donations are tax deductible!

Why am I such a fan of the MDA?

At the age of 36 I became one of Jerry's Kids. For those who aren't familiar with "My Story", I was diagnosed with an extremely rare autoimmune disease (Dermatomyositis) that rapidly left me unable to walk or sit up unaided, I slurred when I spoke, struggled to swallow....yadda, yadda. Pretty scary for someone who had never had worse than the flu.

I was completely lost. When I went online to research my disease I was contacted by a woman suffering from the same disease and told to call the MDA.

The MDA?

Desperate for any information and lost in a sea of medicalese, I called. I made one call. One. Before I knew it I had been assigned a case manager who set me up with appointments with three different specialists (neurologist, physical therapist and occupational therapist), visited my home to assess my physical needs, called me and met me at my doctors appointments 'just in case'.

Unbelievable. Not once did I have to go through any bureaucratic rigamarole.

They saved my sanity.

Please support the work they do.

arghh!!

2006-06-22T17:49:00.000-07:00

Well, at least I have my health!

I've been feeling much back to normal, which means I am back to my compulsive home-improvements. Planted about 12 plants to (hopefully) create a screen across the fencing to block my neighbors' view; stripped wall-paper, skim-coated and painted the bathroom; sanded the bath cabinets so I can stain them to match the wood floor....whew! Fun! I spent 2 days setting up temporary fencing around my plants to protect them from the dogs, just to watch them merrily leaping over said fence within a day. Luckily, they have only eaten one plant so far....I can't believe it - root ball and all were gone, a nice, neat little hole left. Little shits!

Unfortunately, my run of good luck ended this week...first, I ran into my garage door while I was busy chatting with mom on the phone. Cost me $140 just to get it down. I parked in the driveway and had the car broken into - they stole my GPS!!! Now how am I supposed to find this new store?!? Then, I took Tasha into the vet's when I dropped Chloe off for her second of 8 dips to treat her mange....discovered Tasha requires knee surgery that should run around $900. To top it all off, Chloe merrily trotted into the house last night carrying what I though was a large piece of bark....looked a little closer and discovered it was a turtle shell, with the spine still intact. I can see killing the opossums, but TURTLES?? Nothing is safe in my back yard!

Jeez! What's with all the bad Karma this week?

Vacation

2006-05-12T14:24:00.000-07:00

Been awhile for me. I don't generally take vacations - not many places to go where you can bring your animals ;-). I remember as a kid we were traveling in our motorhome and went to visit a wild animal park. At the entry they ask you to leave any pets you may have with you in their office. The look on the guards' faces when we began unloading the macaw, cockatoo, poodle and hamsters was priceless....one asked why we were coming to see the animals when we had so many of our own.

I'm planning to drive down to see my parents in Corpus -UGH! I can already feel the sweat! It'll be worth it to spend some time with them, though. I might even get a chance to try golfing with my Dad. I hope he has a lot of patience! They are ready for the invasion - they ripped out the bushes that were Teddy's favorite place to hang out in and won't re-plant until the dogs and I are gone. Hopefully, Teddy will kill a couple of their backyard pests while we are down there and make the invasion worthwhile for my parents. Go Teddy!

CK news is great - I am down to 79!!! I'm back in the normal range again, and this without the chemo! I had to change providers for my IVIg, which was a pain but as long as I keep getting it, I don't care where it comes from.

Check out my latest 'baby'!
Chloe was sick when I got her, but is all better now. She had pneumonia for awhile and the vets sent me home with fluids. For three days I had an IV bag hanging from the ceiling fan and would stick her full of fluids to keep her going. A few weeks later when my nurse showed up with the IVIg bag and pulled out the needle to put in my arm, Chloe bolted out the door and wouldn't come back in for a few hours. The nurse thought it was hysterical. Anyone who says dogs aren't smart doesn't live with any.

I have no idea what she is, but it looks like she'll be about 40lbs fully grown. Any ideas out there?

Cooow tippin'!

2006-03-21T07:37:00.000-07:00

Let's go coow tippin'! Cooow tippin'!

What the hell?

That was my reaction when I first heard this refrain playing overhead in my bookstore.....What in the HELL is that, and why are we playing it?! Turns out it was from the Little Willies cd - Nora Jones sings on it, but doesn't headline. I don't care WHO sings on it, I have absolutely no desire to listen to anyone warble those words to a tune. God help me!

My Dad is evidently excited to have me visit downtown Fort Worth. At 10am and 2pm they send a bunch of cows (longhorns?) running down mainstreet. Poor cows. What a life - running back and forth. I wonder who gets stuck picking up the crap?

There have been thunder and lightning storm for the past three days....along with an amazing amount of rain. I'm still floored that so many people think of rain when they think of Seattle. So far, I have lived in 4 states with awesome rainstorms, 2 of which get more annual rain than Washington! (shhh! Don't tell anyone, or more people will move to the Northwest and it'll get even more crowded and expensive than it already is!)

Got sick last week. A cold. No big deal, right? Well, since my body has decided to become more obnoxious these days, I wound up with a balance problem. I would be standing still, then suddenly keel over to one side. Walking was a delight - I looked like a drunken sailor! When I couldn't get in touch with my neurologist, I went to the ER. This balance thing was scary....They ran tests - blood, ct, x-ray. (I wonder if I glow in the dark now?) Nothing showed. I sat there for SIX HOURS waiting for the doctor to come back, getting more and more hungry and impatient. I finally decided to just leave - they could call me with the results, which the nurse had already told me were clear. I wobbled my way to the doors leading to the waiting room and was completely stunned to discover they were locked. Locked. What was this place? I was berating the receptionist when the nurse came back. "Where are you going? Where are your papers?" Papers? How the hell should I know? I just wanted to go home!

Never did see that doctor again. They just gave me a prescription for dizziness (the side-effects to the medication? drowsiness and dizziness. Huh?) and finally cut me loose. I think they were as glad to see me go as I was to leave. Go figure. Three frustrating days later I got a pressure sensation in my left ear - you know, like you get in an airplane? I popped my ear and boom! Dizziness gone. Eight days of not walking straight and all I needed to do was pop my ear??

Feeling a bit grumpy this week....can you tell? Hope your week is going better!

700!!!

2006-03-10T18:50:00.000-07:00

Wa-hooo! My latest CK levels came back at 700. The IVIgs are working the magic again! I am so excited because my neurologist took me off the chemo and cut my prednisone in half. It'll probably take me a year to get off the prednisone, and he warned me that I might never be able to get completely off it, but having so much of that poison I was putting into my system every day taken out has me beyond pleased. Now, I just hope the insurance company finally agrees that IVIg is the only treatment that works for me.....I have a feeling the $15,000 monthly bill will make it a hard sell :-(

Now, how long will it take to get my hair back? How long until my face looks normal again?? I want ME back!!!

Ok, ok, enough whining.

An old friend was in town this week, and she was so sweet! Her only comment when seeing me was "Yep. You're on prednisone all right!" We had a great time. It takes another dog lover to tolerate dinner where you have to push a nosy dobie away, and to appreciate gossip taking place over the bodies of two dogs luxuriating in the rare opportunity to each have a human to themselves. I think Teddy and Tasha were more upset to have her leave than I was!

She fell in love with both, of course, and understood why I couldn't let them put Teddy to sleep, despite his homicidal tendencies. You're the best, Cyd!

Wish me luck! I'm trading in a swollen face, thinning hair, deteriorating bones, damaged liver, etc etc for track marks. Fabulous trade-off, in my opinion!! LOL Thank GOD we can now convince the insurance company that IVIg is the way to go!

What's 'ordinary'?

2006-01-29T15:52:00.000-07:00

I caught a small part of an interview on NPR with an author who had written a book....I think it was called 'The Extraordinary Search for the Ordinary American'.

It tweaked my interest since I recently was contemplating how unusual the average person's story is.

For example, as I was chatting with the home health nurse who came to oversee my IVIg treatment I learned a lot about her and her 'ordinary family'. It seems her daughter has Lupus, her sister was once in an abusive marriage to a cop and was saved by a guy she met in the internet who conspired with her family to sneak her out of town. She now lives with him in Virginia.

I have a coworker who has a port wine stain. Aside from the social problems that you know every child with a visible physical difference goes through, I learned that there are serious medical problems that come with this physical condition. He and his wife are very active in educating and supporting others with port wine stains. Looking at either one of them, you would never guess their extraordinary story.

I have another coworker (young!) who set her life on hold to raise her sister's children.

I have an old friend with one of those fathers who went through her own personal hell trying to find a way to respect herself after her father did his best to teach her she was not worthy.

I have an email pal - an older gentleman with the eyes of an artist, the soul of a poet. He also suffers from IBM and has lost much of his ability to physically enjoy life and explore his gifts. He spends much of his time delighting our online group with his sage perspective and quirky sense of humor.

I could go on with so many of the stories I have heard from people who I have come into contact with.

When I was in my self-centered and depressed teens....all right, all right - and twenties!..... I can remember being bemused by the seeming happiness and contentment of those around me. 'Are they really happy?' I wondered 'Or are they just too stupid to see how miserable life can be? How much pain happens seemingly at random?'

Does someone look at me that way? Ignorant of my travels across the country, my oddball childhood, my disasters, my fight with a rare disease?

I now can see and respect how ordinary extraordinary is. It seems to me that most people have a story to tell. A story that includes a fair share of challenge, pain, drama, recovery, love, excitement, etc....

Extraordinary IS ordinary.

Of course, that doesn't stop me from wishing for a little less extraordinary in my life ;-)

Reading over this, it sound incredibly trite. Maybe I should go on Oprah! Oh, that's right - MY story is real!

Trite or not, people really are interesting in the stories and experiences they have to offer.

Early Death

2006-01-26T20:58:00.000-07:00

I saw a death notice on the TMA site today that really brought home how fickle fate can be. A young man died from complications of myositis less than two years after being diagnosed.

Hi wife feels that his death was preventable, if not for the relative ignorance of his doctors regarding this rare disease.

And here I have been complaining about the endless tests my doctors continue to put me through to ensure I do NOT have any complications.

Shame on me.

More news of the weird.....

2006-01-05T20:20:00.000-07:00

How much stranger could life get? What a silly, silly question....

Went to see my neurologist today, and got some great news, some bad news, and some weird news.

The great news? I was worried about the bills when I realized that this neurologist was outside my insurance. I asked for my balance today and was informed that the MDA picks up the difference. Have I mentioned before how much I love the MDA? Considering my medication co-pays alone run me over $150/month, this was great news!

The bad news? My insurance company denied our attempt to get me back on IVIg treatment. Said it was only 'proven' effective for Dermatomyositis, not for Polymyositis.

The weird news? My neurologist changed my diagnosis from PM to DM.

Huh.

His point was that my biopsy was positive for myositis but wasn't specific for which since I was already taking prednisone at the time of the biopsy, the fact that DM is more common, the fact that I responded so well to the IVIg but have not to the other treatments, and the fact that I have itchy skin on my hands and my eyelids get red. I had assumed the skin issues were due to my thinning skin, courtesy of the drugs. Good thing I had already asked my PCP about the hives in case the insurance company doubts the sudden appearance of rashes. I also checked with others at TMA - several people didn't have rashes in the beginning and were later dx'd with DM.....

At this point, I'm just confused. I guess it's time to bone up some more on DM......

Another Christmas gone by.....

2005-12-29T19:56:00.000-07:00

Whew! It's over. One more Christmas spent running at top speed to meet the gift needs of the general public. I must say, the Texans have been MUCH nicer about out-of-stocks than any other group I've dealt with over the years. Let's hear it for the southern grace!

That grace made a difference for me. It was a tough season. My medications seem to have fallen asleep at the wheel and my CK levels are out of control again....over 4500. *sigh* I have a new neurologist, with whom my mother is less than impressed. I think Dr Solomon in Seattle ruined her for all other doctors. His 'do or die' attitude made an impression! Of course, so did the fact that his treatment was so successful. I did visit a wonderful internist today, and think Dr Mehta will make a fine PCP. He was kind enough to agree to do my cancer screening pap-smear AND renew my anti-depressant prescription to save me from having to get two MORE doctors. Plus, his nurse did a great job pulling blood. How sad is it that I now judge a clinic by how easily they pull my blood? But jeez, it's such a pain when they keep missing. Anyone who can get it on the first stick is a hero in my book!

My new crew is so terrific! I guess there really is a reason for everything, and it makes me wonder why I fought so hard to stay on at BN. This Borders crew didn't blink an eye when I started to show some signs mid-way into the season of my disease. Instead, they would just tap my shoulder when I started to limp heavily and 'order' me to oversee the cashwrap and leave the floor-running to them. Wow! What a group! And what a difference it makes to work for a company that doesn't care if you appear competent, just that you are competent.

We had fun about a week ago. I was driving to work when this little puppy came darting out into heavy traffic. I immediately pulled onto the median and jumped out to try and grab him. Thankfully, the Texans were kind enough to stop for me....or perhaps it was just to watch the crazy lady stagger about flapping her arms..... In any event, I managed to call the little guy over to me long enough to grab him by the scruff, only to discover I couldn't lift him from a crouching position and had to hurl him into the car. The poor fellow sulked all the way to the store. Once there, he spent my entire shift behind the cashwrap sleeping in between play-time with various staffers. He was quite a hit. I reported him to the local shelter the next day, and his family came to get him. Hopefully, they'll keep a closer eye on him in the future!

Here's hoping everyone had a wonderful Christmas, Channukah, etc and that 2006 greets you with happiness and success!

What a difference a year makes.....

2005-12-03T20:06:00.000-07:00

Wow! It's been a year since my 'adventure' began, and looking back at everything I can't help but feel very lucky.

*All of those wonderful 'cancer screenings' are done, and all came back clear.

*My strength is back at around 80% (pretty much what I was told I would recover).

*While I still tire if I work too many days in a row (like eight!! Hope that's not necessary for awhile), my stamina is much, much better.

*I am still looking forward to the day of reducing medications, but my body is saying that that time is not yet here. *sigh* While my face is no longer reminiscient of the moon, I am still waiting for the day that I look like 'me' again!

*All of those aids I required 8 months ago now sit in my garage....and, God and my neurologist willing, they will STAY there!

*My condition is controllable, and not degenerative. If you must have a 'condition' (and far too many of us do) it might as well be one that is a pain, but not life-threatening.

*My brother has a new, exciting job.

*My other brother is having a ball with his new job.

*My father has a new, potentially fulfilling role at work.

*I am loving my new job, being back with my old company. They could care less that I have a disease. I can do the job, and that's all they care about! Wow - what a concept!

*I get to see my parents on a more regular basis (I am campaigning hard to have them relocate to DFW).

This is definitely holiday season worth being thankful for. There are some sad moments....I had to put my old friend Heidi down the day before Thanksgiving. I thought I wanted to be there, but she refused to lay down for the shot and when it took effect she just dropped. I was crushed - all I could think was 'I just killed my dog'. While my mind knows it was time, my heart is a little tougher to convince. I have a great friend who is also a dog-lover who cared enough to spend 1 1/2 hours on the phone remembering Heidi's quirky personality and sharing the laughter and tears that come with the memories.

I still have a terror of a retriever, who loves all people and hates anything with fur and a pushy dobie who has a recently revealed distaste for lively children. Teddy is currently sprawled belly up at the foot of the bed, while Tasha is curled up half on top of me forcing me to type around her head. They help ease a bit of that pain in saying good-bye to an old friend. My mother worried that I would try to get another dog to replace Heidi....no fear there. I love dogs, remember? Teddy would kill any I brought to the house. For the sake of all canines I will control my urges to fill the ache with new furry friends ;-).

Friends come in all shapes and sizes....but the furry ones are still the best of all!

More Doctors?!

2005-11-11T05:56:00.000-07:00

Well, I went for my follow up with the neurologist yesterday. We had a great time needling each other, but he went back to insisting that I make appointments with a psychiatrist (for renewals on my antidpressants due to all the other meds I am on - the neuro wants someone familiar with the meds to monitor that end) and a GP. This man is relentless! Two more doctor appts?? *sigh* My new insurance company is going to LOVE me!!

I had to get two blood draws, as well. I am looking forward to getting an update on my CK levels, particularly as I've been losing muscle again in my shoulders, but Geez! Some of the techs are nuts! One went for a vein in my wrist, couldn't get it, so kept fishing the needle around muttering 'I am going to get this vein!!' I finally told her to give it up and go for another one before she severed something important.....

Mom comes today!!! I am so excited to see her, but know this is a trip she doesn't need. She's tired and stressed, and I feel terrible that she's coming up here for a week when she'd rather be home relaxing. I can't wait to show her what I've done to the house, though. Plus, she is aces at decor, etc so she's going to work on my furniture arrangements. I just kind of plunked everything into place, so there really isn't much 'design' to it ;-)

Heidi is feeling better - I think. She has more energy, but her appetite is inconsistent and she is doing odd things, like consuming her own urine. What is THAT all about?! You really need a strong stomach to have animals, or kids. Some of the inexplicable things they do are just disgusting! Heidi has also taken to expending her energy by pacing about the house in the middle of the night. With all my wonderful new hardwood and tile floors, it rather sounds like a drowsy woodpecker pecking all night.

I am ALMOST unpacked....just some final touches in my closets, about a 1/2 dozen boxes of books, a garage to organize....ok, ok....I'm giving myself a headache. Unpacking has never taken me this long before! WHEN did I collect all this stuff? For the first time in my life, I am actually contemplating a garage sale. Mom loves them, I hate them. I hate the haggling. For gosh sakes! Why on earth would you haggle over a dollar? Just take it! I usually just donate stuff, but I am feeling the pocket pinch with the new floors and having to start all over with a new medical deductible. $500 in my first two appointments! Maybe I can make at least a little cash from a garage sale.......

Ode to a Colon

2005-11-10T04:17:00.000-07:00

Well, life sure has gotten full since I gained a disease! I used to spend my days off relaxing and puttering. Now, I spend half of them at various doctors, and the other half trying to fit in all my 'puttering'.

Mom flies in tomorrow to dog-sit while I am at my training in Ann Arbor. She gets to dodge Tasha's affectionate licks, coax Heidi into eating and monitor Teddy's backyard rampages. I'm sure she's thrilled!

As soon as I return, I get to experience my first colonoscopy.....and the crowd roars!!! I had to attend an 'informational meeting' with about 25 seniors where they showed us a video of an actor 'enjoying' his procedure, then listened to a nurse lecture us on the prep. The prep sounds like a nighmare! The actual procedure seems like breeze. All of the literature they gave us kept repeating "Make sure you have bathroom facilities available". *sigh* I can hardly wait.....

I have this image in mind of a line of gurneys with doped up patients, butts exposed while the doctor works his camera magic....one gurney at a time. Kind of like a production line? LOL

Where oh where has my dignity gone?

Settling In....

2005-10-15T16:40:00.000-07:00

Whew! I can't believe it's been a month since I last blogged....time has been flying.

A quick update:

My brother and his family have decided to accept a job with a company in Canada. Yup - they're going north! My sister-in-law, the dedicated Republican, in Canada! I wonder if they're ready for her.....

My dogs are back with me, and Teddy has already made his presence felt to the local wild (and not so wild) life by taking out a large opossum and a cat in the same day. My mom said they seemed to know they were coming 'home' as they were waiting anxiously by her gate when she went to load them in the car. Once they got to the house, they immediately tore into the backyard to announce their presence. Thank goodness I had just had the dog-door installed that day!

I am having the carpet torn out and tile/wood floors put in to better survive the dogs. Heidi is hanging in there, but her age has taken it's toll and she tends to have frequent accidents. Ugh!
I have a very nice gentleman doing the installation. He is a bit odd, though. He cried when telling me about his dead dog (not so odd, I cry remembering my lost pets), and then sent me a text message in GERMAN to inform me of the animal corpses Teddy the Terminator left in the back yard. He said he was afraid to tell me....not sure how the change in language made it easier, bit what the heck! Keeps life interesting! I have no idea how he knew I knew a smattering of German, though....kinda freaky.

Work is going well. I don't think the staff quite knows what to make of me yet. I guess the last manager was a very serious fellow, and all my laughing, dancing, teasing and cracking jokes over the PA system is throwing them for a loop. They're getting into the spirit, though!

My health is holding fairly well. I recently began losing muscle again, and went to see a neurologist with the MDA ( I LOVE that organization!) He raised my prednisone levels again (Yech!) and is sending me in for a full cancer screening since this disease can be associated with cancer. I didn't think this would be a big deal, until I discovered I was about to experience a mammogram, colonoscopy, bone scan, ultrasound and pap-smear all in the next couple of weeks. Oh, the joy. He's a funny guy, and was ordering me in no uncertain terms to 1) get a regular doctor 2) get off the Methotrexate, even if it means more prednisone and 3) get screened for cancer (when I objected to the idea of having a camera sent up my bum he snapped, in essence, 'it's more like a garden hose, and get over it').

*sigh* Oh, my glamorous life!

What a life....

2005-09-12T15:39:00.000-07:00

I was sitting here in my luxurious hotel room (not!) reviewing my notes over what is left to do before my move-in date, and I got to thinking about this past year.

What a life! When I moved back to Seattle, I swore I was there to stay. I moved a bit as a kid, but after college is when I really started to make tracks. I moved between Washington, California, Washington DC, New York and New Jersey......10 moves in 10 years. Change finally got a little old, and the birth of my niece and nephew convinced me that nothing would make me happier than settling down near family and establishing myself for once.

That was 5 years ago. I made it 5 years.

In August of '04, unbeknownst to me, life took a curve. I got sick in August, diagnosed in January, changed jobs in July, moved to a hotel room in Texas in August, and am now facing yet another move in September.

I wonder how long I'll make it here? Hey - if anyone's listening out there....I'M TIRED! No more curve balls for awhile, OK? Pretty please? With a cherry on top?

Now that I've whined for a bit, what about that curve ball the Gulf states got? When I start to dwell on my curve ball, I am going to try and think of just what kind of challenges those folks are facing.

Have you donated yet? If not, please give it some thought. Even $5 makes a difference. Personally, I went with my first love and donated to the ASPCA. Everyone, every creature, needs some extra help, and not everyone out there has a family like mine who is able to step in.

Blast from the past!

2005-08-29T22:35:00.000-07:00

Wow! The wonders of technology!! An old friend of mine from high school and college tracked me down via my blog site....I got an email from her, and as I generally delete any emails I don't recognize I nearly deleted hers. I have been trying to track her down off and on over the years, but as she changed her name haven't been successful. I am looking forward to doing some catching up!

I have been slowly making my way down my 'to-do' list from my hotel room on my days off. I am a little frustrated with my doctor search. The MDA was able to give me a referral, but the soonest I can get in is mid-October! I really don't want to wait that long to assess my progress on the prednisone weaning, or to check my response to the Methatrexate (some nasty side-effect potential there!) I made an appointment, and asked to be called with any cancellations, but will continue to search for someone with an earlier appointment who is familiar with Polymyositis. The doctor affiliated with the MDA is a neurologist, and I hear they tend to take a slightly different approach than rheumatologists do....should be interesting!

The dogs are doing pretty well down at Mom and Dad's, though Teddy has shown a previously unknown talent for escaping confinement. Heidi has rediscovered her strength, which means she can be tough to corral and point in the right direction for her morning constitutional....oops!

Still surviving the heat!

Battle of the Species

2005-08-21T18:39:00.000-07:00

Well, we made it. Mom drove the majority of the way - what a marathon! The dogs had it the worst (although mom may challenge that due to the rather strong eau de dog we had going after three days in the car. Plus, there was the 'phantom farting'. Mom insisted one of the dogs was farting, but I never smelled it. Either I am now inured to the fragrance, or she is smelling farts where none exist). Heide (the 13 year old retriever mix) slept for about three days once we reached Corpus. Tasha (the dobie) is flustered by the change, and spends most of her time curled up on the bed, or pressing against the nearest human. Teddy (better known as the Terminator) is totally unphased. As long as he has his food, he's a happy camper.

The same canNOT be said for my parents' two birds. Teddy was told firmly the first day that the birds were off-limits. I should have known by the studious way he ignored them that he was simply biding his time until no one was watching. And it happened. Early in the morning on the third day, Mom and I had our backs turned when the commotion broke out. Teddy went for Tootsie - the African Grey parrot. This breed sells for about $1300 - not that the monetary value outweighs the emotional bond my folks have with this bird. I tore Teddy off the bird, my Mom picked Tootsie up off the floor, and my Dad came racing from the bathroom - complete with his half-shaved face. Mom and Dad locked themselves in the bathroom to comfort Tootsie and check her for injuries, while I ran Teddy out the back door. He now spends his time tethered to the banister whenever the Tootsie is out of her cage. Tootsie came out of it traumatized, but relatively unhurt. It took me hours to slow my heartbeat down. Here my parents are generously allowing their house to be invaded by three large dogs, and one has to use their beloved bird as a chew toy!

I am now staying in what will be my home for the next 4 weeks - a hotel off I-35 in Fort Worth. Have I mentioned the heat yet? A full 30 degrees hotter than Seattle. Have I lost my mind?? I have spent the last four days SOAKING WET. I never knew breasts could sweat. And the bugs! I am covered in mosquito bites. My folks wanted to know why I didn't wear long pants and sleeves....Somehow, they failed to tell me that not only would I have to become accustomed to 100 degree weather, but that I would have to do it in my winter-wear!

My first day at the new job is tomorrow, though, and I'm excited about that. I am a little overwhelmed by the next few weeks....I have to familiarize myself with a new city, new job, find new doctors, close on my new house, arrange for some minor changes (like replacing the sea-green carpeting and installing a dog-door)....yikes! When is my next vacation?

My prednisone weaning has been placed on hold until I can find a new rheumy who can monitor the progress. I had a very sobering conversation with my Seattle rheumy, who pointedly told me that I was not out of the woods yet, and that I would not come back from a flare nearly as well the second time. Sooo....I am reining in my natural impatience and taking the prednisone weaning very slowly since going too quickly will throw those with myositis diseases into relapses.

Do me a favor and send some cooling thoughts my way, willya?

Pods from Outer Space

2005-08-11T05:48:00.000-07:00

I swear those moving pods SHRINK! That is the only explanation for why four weren't sufficient. I had to have another one delivered, and am hoping that will be enough. Geez - when did I collect all this stuff?? And I accuse my uncle of being a pack rat....

Speaking of the pack rat - my family ROCKS! My poor uncle came down and spent the night to help me with the final moving preparations. As a former Naval man, no one can beat him in knowing how to pack and keep things moving along- with colorful and entertaining expletives! He worked like a dog, and directed those movers making sure every spare inch of pod space was used (and I still ran out of space??) I kept telling him to take it easy - his girlfriend strikes me as someone who would take swift action should someone cause harm to her man! LOL

I left at one point during the pod-packing to get lunch for everyone, and when I returned it was to three men with suspiciously innocent looking expressions on their faces. I began unpacking the fast-food, while looking about trying to see what could have caused this reaction, while they chattered away - you know, the way men only do when they want to distract you? My concern began to rise when I spotted my saws-all sitting on top of some boxes. For those of you who aren't familiar with them - this is a large tool that will cut through anything - wood, metal, etc. Uncle Mike began lecturing me sternly on the two items you never pack during a move - tools, and an extension cord. I responded that I hadn't packed the tools, and just what did you need an extension cord for? Everyone got very quiet, and the moving guys began inspecting their food intently.

I should explain that I have a very tall armoire made of solid wood that I was concerned might not fit in the pods - the delivery guy looked it over and assured me it would. Well, apparently it wouldn't. So my Uncle - being the 'get it done' kind of guy he is - decided to do some last minute renovation.....to the pod, and NOT the armoire, thank God! I'm just glad he waited to do it while I was gone so I can honestly say I didn't see what happened, should the moving company notice it later!

And then there's my mom, who arrived yesterday to make the drive with me to Texas (the trip has now been delayed a few days due to the additional pod). I picked her up from Seatac after an hour wait for her luggage - this is why I try to NEVER check luggage when coming into Seatac. I had called my sister-in-law the night before to ask her to put my mom up for a few days, since the trip was delayed and I refuse to have her join me in sleeping on the floor of an empty house with no fridge and three dogs. I am sleeping on an air mattress and Heidi (who hasn't been able to reach the bed for a few years now) was happy to join me and the other two dogs at night. All three are fairly uneasy with all the activity, so I wind up with a Tasha on one side, Teddy on the other and Heidi in her old spot near my head....I guess I'll have to get used to a face full of fluffy butt-fur in my face for a few nights!

As my Mom and I were leaving the airport, we had this exchange:

Mom: So, what did Uncle Mike have to say?
Me: Son of a BITCH! Shit, shit, SHIT!!
Mom (looking about frantically): What? What!
Me: That's what he had to say.
Mom: Who?!
Me: Uncle Mike!
Mom: Oh.

Then she starts to laugh as the exchange sunk in. Now, watching my mom laugh is enough to make the most sober individual giggle. Her face brightens in glee, her skin pinkens and the only noise she makes is small huffs of air. If you really tickle her funny-bone, tears will stream down her cheeks while the huffing noises come more frantically - almost squeaking. Every time I am able to make the tears come, I feel like I won a prize. I am the FUNNIEST person on earth at that moment.

I love to make my mom laugh, and she deserves every snicker, giggle, belly laugh she can get. The last time she went on a road trip with me I happened to bring the book Stupid Criminals which I read to her on the way, to her delight. This time I tried to bring audio books, but No! She wanted me to read to her. So I poured over the humor section and bought 5 more 'stupid' books - whatever she wants, she's gonna get for agreeing to make a 2500 mile trip in a small SUV in the summer heat with me, our luggage and THREE LARGE DOGS. Listening to music isn't an option as I object to her choices (Roger Whitaker and John Denver) and she objects to mine (Janis Joplin and Aerosmith singing the blues). What a combo! Maybe we could trade off....*snicker*

Our trip will be punctuated by regular calls from Dad. He and Mom talk multiple times a day when either one is travelling. Mom's family once commented that it seemed controlling to them - which left Mom bemused. They truly have a wonderful relationship, and enjoy each others' company immensely. I can only hope to find that kind of relationship. Dad is very excited to have me in Texas....I think it really bothered him to have me so far away when I was ill. He never saw me at my worst, and while he couldn't have done anything I'm sure it was tough knowing your child was fighting a disease while you couldn't even offer a hug. His hugs are worth gold!

Here's hoping for an uneventful trip, and to getting my long-overdue hug from Dad!!

Found it!

2005-08-04T18:24:00.000-07:00

Well, moving day is getting closer! My house passed inspection....if you consider having to put on a new roof 'passing'....I can't really complain, though, considering the buyers went $5K over asking and the new roof will only cost about $2K. Still, it hurts a bit to pay for a new roof I can't enjoy.

I flew down to Ft Worth on the 2nd, went to see the houses my realtor and mom vetted for me. Thank God for my mom!! Even the realtor was impressed with her - she said my mom took her job very seriously and was intent on finding the best house for me, and boy, did she! This house is terrific! Great yard for the dogs, already has hardwood floors in a few rooms, nearly twice the size of my current house and nearly half the cost! Texas sure does have some bright points! AND (the biggest selling point for me, after the yard) it has a BONUS room above the master bedroom where I can store most of my books!!!!! Yippeee! No more stacking them 2 and 4 deep on a shelf and having to dig to find the one I am looking for! I swear my addiction to books is as bad as an alcoholic's for their daily drink....

I was also really impressed with DFW. There are trees! I know, I sound like an idiot but I guess I expected an entire state of desert. The only downside is that the owners of the house I put the offer in for don't want to move until mid-September. This means mom and dad will be dog-sitting for a month. I guess if there was ever any doubt as to how much they loved me, seeing my mom exhaust herself looking for the perfect house then agreeing to bring three large dogs into their newly remodeled house proves it beyond a shadow! I can't wait to see what happens when their two large parrots meet my dogs! LOL! I bet the birds scare the pee out of the dogs the first time they screech!

I also got to see my new store. It is very pretty, and the staff seems like a happy crew. I can't wait to get down there and get things going! I am still a little nervous about the affects of the move with me weaning from the prednisone, but the bright side is that I am doing so much better. My mom kept staring at me, marveling every time I crouched, got up from a chair unassisted or even rolled over in bed. It almost seems like a bizarre dream to think of how sick I was just a couple of months ago..... Life sure is interesting!

The pods get delivered tomorrow, I have three more days of work then I pack, then mom and I will shove the dogs in the car and take off for Texas. Wish us luck! With that crew in tow, we will need it!

SOLD!

2005-07-26T06:20:00.000-07:00

Life continues to roll swiftly - my house sold the first week it was on the market. We actually had a bidding war! The inspection is tomorrow, and even though I know the house is in good shape, a part of me will be nervous until it's over. I am really pleased with the new owners, though. The house was almost bought by someone who wanted it for a rental - my heart cringed at the thought after all the work I put into the yard and house. This family has two boys (one has Downs) with one on the way. They were so excited about buying their first house! The mother started to cry when I gave her a 4 page outline on the maintenance of the house. I remembered how stressful it was when I was a new home-owner and completely at loss as to what needed to be done when.

I am just glad it is over! Showing the house was nuts - there were over 20 showings in 4 days!! At one point, I was in for my IVIg treatment and was getting calls from realtors asking to show the house. One got frustrated when I told him he would have to wait until after 4pm so I could go home and put the dogs out. He kept insisting that it would "only take a few minutes", but backed off finally when I pointed out that I wasn't sure how to drive with an IV pole in tow and that my nurse would probably object to me finding out! Another kept pointing out that the listing indicated the dogs were friendly. I responded that they were - when I was around. I pointed out that I hadn't had the opportunity to see what they would do if strangers walked in, and as one was a Doberman I didn't think he wanted his clients to be the test subjects. ;-) He reluctantly agreed....

I am going to be working a week past when I had planned to make my last day at work...I just couldn't leave that new manager and the team hanging. Besides, I have been having a blast training a few of the newer managers. Two of them blew me away yesterday when each (separately) asked if I was aware that the company was probably trying to get rid of me by sending me to that store. The assistant manager used to be an employment attorney, and she outlined what she thought they were trying to do (sending me to a store that would be much more physically demanding) and suggested I seek an attorney for advice. She actually said she was angry when she heard I was being moved to her store since she didn't want to be a part ("even tangentially") to me being forced out due to a health condition. I was shocked, since I certainly hadn't said anything to anyone. It was heartwarming to hear them get so indignant on my behalf...yet another step towards rebuilding my confidence! I wonder if my boss is aware of how many people came to that conclusion and how much it has shaken their confidence in both her and the company.....as my mother says, what goes around comes around! I am sticking with my original approach of just not commenting, but I must admit to being secretly pleased that others recognize what was going on. It was such a blow to think that people would assume that it was my performance.

I am flying to Texas in a few days to house-hunt, and I have already sent marching orders to the realtor and my Mom. Thank God for my Mom! I'm sure the realtor thinks I am nuts since my top two priorities are (in this order) a fenced, treed yard for the dogs and room for my books. LOL! Mom and I will be leaving to drive to Texas from Seattle mid-month. I am a little worried about the drive, the heat and the dogs. Heidi is so old....my brother (ever the optimist) has already asked what we would do if she dies on the way. His concern was that we would have to leave her on the side of the road. Mom assured him that we would find a nearby town and a vet to take her.

I am continuing to wean from the prednisone, and bought extra vials of the Methotrexate. I am down to 12mg/day of prednisone and will ask my rheumy at my next visit what the plans should be for pausing the weaning process during my move. I am hoping he will say it isn't necessary....

I will update on the house hunting progress - my hope is that the sellers will agree to allow me to move in before closing, though this might not be necessary as my loan officer says I can close as soon as the Seattle house closes. I just want to avoid staying in a hotel with three large dogs....and I think the hotels would agree that it isn't a good idea! :-) Mom and Dad don't know this yet, but I was thinking I could stay with them until the house closing and move-in date....poor Dad. It will truly be a test of his love to be invaded by three large, shedding dogs! Not to mention that Mom will have to help me walk them in order to protect their show-case of a yard. Like I've said before - having kids is a lot of work!

Last IVIg??

2005-07-21T07:51:00.000-07:00

I am getting ready to go in for my (hopefully) last IVIg treatment. Everything has been going so well that I am truly hoping I am one of those 1/3 with Polymyositis that is able to go into complete remission. From the sounds of some of the statistics that I've seen, a general statement might go along the lines of 1/3 able to achieve remission, 1/3 have control over the disease through medication and occasional flares, and 1/3 have to continually wrestle with this disease. I see so many of my friends at the TMA website that fall into that last 1/3, not to mention those who have DM and IBM.....my thoughts are with them. Their bravery and hopeful approach to life is truly inspiring (especially you, Jack! Thanks for the recipe - I'll have to try it and see if I can do it without destroying it!).

On a rather comical note, my house here in Seattle went onto the market on Sunday....in two days we had 3 offers!! My realtor is coming to my rheumy's office to bring me the paperwork. I can't wait to see her reaction when she comes into the infusion room and is faced with rows of people in Barca Loungers with sleeves rolled up, attached to IV poles! LOL!

I am beginning to be cautiously excited over my move to Texas....I still have some doubts as
to my ability to deal with the heat. But WOW - getting twice the house for half the price is worth some gleeful anticipation. Plus, it feels so good to feel valued again. It had gotten so stressful and ego-damaging with my employers, and my new boss is so excited to get me that I'm beginning to lose that beaten-dog feeling.

Of course, it helps that the recent statistics that were released shows my store at the top of the list. AND they have ME training a new manager instead of the trainer who has had her for three months without providing her with the training she needs. She asked my boss if there was any way to get me to stay for a month since she is getting so much more information....a small, petty part of me hopes that my boss will soon regret 'disposing' of me because of the thought that my illness could impact my performance. Since it clearly hasn't, I hope at least she learns not to leap to conclusions when someone becomes ill.

Well - I'm off! I hope everyone is doing well!

Here I go!

2005-07-15T12:29:00.000-07:00

Well, I was fortunate enough to get an offer for a job in the Ft Worth area!

I don't know whether I should be scared or excited....there is so much to do in a very short time frame. Plus, tonight is - da-dum!!! HARRY POTTER! We have 3 news crews filming live, over 3,000 people expected. Gulp! I hope I come out of it in one piece.

I am still weaning off the prednisone, which is another worry. I have heard from several sources to stop weaning if you are due for some major life stressors. I just want to be off the prednisone, but don't want to risk throwing myself into another flare of the Polymyositis. I am also hoping to find a rheumy I like and who can continue to provide me with the injectable methotrexate....there is currently a nation-wide shortage. Jeez! I just want my old face back - no more swelling, no more acne. I will never again bemoan the occasional pimple! There are so many side-effects to prednisone. If anyone reading this is taking prednisone, try reading Coping with Prednisone - lots of great information.

My mother is being her usual self as an invaluable resource. She is an old hand at house-hunting and we already have plans to have her go up a scope out possibilities early so that I can fly down and choose among those she has previewed. I have already forewarned her that I will need her to house/dog-sit when I am sent off for training. LOL - she may yet live to regret having me so 'close', if you can consider 9 hours close.

I am really, really excited to live closer to my parents, but wish they didn't live in such a hot state! I am seriously considering having the dogs shaved before I head down. What will be fun is buying more house for half of what my house is in Seattle! I can't believe the difference - even though my salary is going down I will still be improving my standard of living....providing you don't think about the heat index.

Now, how do I beg, borrow and steal the labor needed to move my 6,000+ books. Any volunteers? :-)

Happy 4th of July!!

2005-07-04T10:59:00.000-07:00

I would like to thank all of the military men and women as well as their families for the sacrifices they make on a daily basis to ensure our safety.

You are in my thoughts, and I wish peace and safety for you all.

Vacation

2005-07-01T09:23:00.000-07:00

I've been on vacation this week. I don't often take vacation, and this is the first time I have ever taken vacation without a reason.

I need to do this more often.

My rheumy told me that I could resume exercising (it is not recommended during the disease onset as it can speed up muscle atrophy)....I didn't have the heart to tell him I wasn't exercising BEFORE my disease onset! ;-) I decided that resuming former activities would do, since these activities seemed to keep me in fine shape prior to my Polymyositis diagnosis. He also told me I could continue to reduce my prednisone dosage. Yippee! I wonder how long it will take to lose the moon face and acne? *sigh* I can't wait to look like 'myself' again!

I had another visit to the psychiatrist to check on my response to the anti-depressant medication....he was just as vocal as he was on the first visit, and I found myself weirdly hypnotised by his tongue which kept popping out like a gopher with ADD. I'm still not entirely sure which of us is in more need of medication.....

So - this week has been a combination of frittering my time away surfing the web, doctors' appointments and completing a lot of the home improvements that had been interrupted. I am trying to make sure that the house is in good condition in case I actually get a job offer that takes me to Texas and I need to place it on the market. By the way - thanks a LOT for those encouraging comments on Texas weather! I can feel my hair curling already.....

I know, I know - boooring post! I can't help it! Nothing interesting happened this week in my little, little world but my mother keeps asking when I am going to post again!

This one's for you Mom!

Dropped Eggs on Toast

2005-06-27T06:23:00.000-07:00

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??

Mine.

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 time-bomb....you 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 tantrums.....you 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......

Ah....Huh?

2005-06-23T17:26:00.000-07:00

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........

Why Texas??

2005-06-16T18:52:00.000-07:00

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.

Texas.........

More suggestions....

2005-06-15T06:53:00.000-07:00

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!

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

2005-06-14T19:08:00.000-07:00

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 salaries....in 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?

2005-06-14T18:21:00.000-07:00

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.

Yikes!

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 minutes...talk 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!

It's a Dog's Life

2005-06-11T11:07:00.000-07:00

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 zoo....you 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......

Great news!!

2005-06-10T17:31:00.000-07:00

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 reaction....so 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 here...it 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!

First, kill all the lawyers....

2005-06-09T17:30:00.000-07:00

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 $.27....now, 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?

When Disaster strikes......

2005-06-07T06:42:00.000-07:00

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 Queen.....no, 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:

Earthquakes:

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.

Fires:

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.

Floods:

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

Riots:

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 cops.....it 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.

Volcanoes:

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

Blizzards:

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 phrase...you 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.

Tornados:

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'.

The boom finally fell

2005-06-06T16:25:00.000-07:00

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.

Hmmm....

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'!

Can you help me find.....

2005-06-05T21:29:00.000-07:00

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 inquiries.....like 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

2005-06-05T20:48:00.000-07:00

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 http://www.disabilityproducts.com/cgi-bin/disabilityproducts.cgi - 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 www.QVC.com

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 watching...at 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.....

Thank you, aimless forest

2005-06-04T09:47:00.000-07:00

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:

http://aimlessforest.net/

2005-06-03T23:41:00.001-07:00

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

2005-06-03T23:41:00.000-07:00

Mom and Tasha, snuggling

2005-06-03T23:40:00.001-07:00

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

2005-06-03T23:40:00.000-07:00

Teddy - better known as Terminator

Heidi - my blind 12 year old golden-corgie mix

2005-06-03T23:39:00.000-07:00

My Story

2005-06-03T23:19:00.000-07:00

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

DIAGNOSIS PHASE

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…..talk 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 Overstock.com 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.

TREATMENT PHASE

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.