Valet Psychology.

Sorry I've been so absent lately.  My mom has been back in the hospital for a lot of the last month.  Due to the hospital stays I have been there a lot and have also used the free valet for handicapped folks a lot as well which got me thinking...

Valets must get some amusement out of driving various vehicles, listening to the radio stations playing in the car, seeing the passengers exit, checking out the bumper stickers. I could see myself making a game of it.  60 year old man with patches on the sleeves of his jacket gets out of the car.  I imagine jazz or classical on the radio and a spotless car.  17 year old girl gets out of a car with dreadlocks and a long skirt.  I imagine some sort of new age hippie music and a coexist bumper sticker.

Who breaks the stereotypes?

What would you imagine a 38 year old woman (though I was asked if I was "about 28" the other day by a man who has kids in their early 40's, he claims) driving a Scion XB with a handicapped plate on the back to have playing in her car?

The other day it was Metallica's "Enter Sandman" though my Toad The Wet Sprocket CD case was also sitting in the car.

I asked one of the valets about it the other day (Incidentally, in addition to the fact that no one should be in the hospital long enough that you memorize their phone numbers you also should not know any personal details about the valet workers.) and he said he had never really thought about it but then he recalled the oddest situation with a car he had to park.  He said he parked a car with about 100 loaves of fresh-baked bread in the back seat and imagined that they had boosted a bakery outlet.  LOL

After a little discussion about my thoughts on the topic, reflecting on the person that may drive a car with 50 McDonald's bags in the back seat or the 80 year old grandma that listens to rap music.

It seems like such a little thing but what could someone assess about you by your vehicle alone?  I'm guessing my bumper sticker featuring a stick figure Jason chasing a stick figure family with a chainsaw captioned "Nobody cares about your stick figure family." might just negate all preconceived notions about the person with the handicapped plate and the walker and cane in the back seat.

Clothes Pet Peeves

I have an issue with clothes.  Don't worry, I'm not a nudist.  There are just lots of things that bother me about clothes.

I sleep a lot during the day.  Clothes that normal people wear when they leave the house just aren't great for sleeping in.  Changing in and out of clothes for naps is just too much work.  I think I should get a free pass to wear oversize sweat pants and pajama bottoms out of the house without anyone looking at me weird.  It should also be okay to wear that outfit with sports socks and sandals because they are easiest to put on.  Not that I would do that or anything (shhh neighbors!).

There are other things that bug me about clothes.  I hate clothing terminology - blouse, slacks, panties, trousers - those words make me cringe.  Yuck.

Don't get me started on the seam on the front of dress pants.  What gives?  That's just looks weird.

Then there's the dress shoes that don't go up far enough on the foot and give toe cleavage.

I also don't like dress pants with high heels or even those boring flat shoes.  Now, there are lots of people that look great in them if you have the right shoes.  Those 1990 style plain Jane dress shoes are not it.

Though I loved the show "What Not To Wear" (RIP), I hate when they would put two different patterns together or shoes that don't remotely match an outfit.

On the other hand, I love lots of stuff that others surely don't.  I love patterned shoes and socks.  I love bright and cheery colors.  Birkenstock makes some really fun patterns and I have a couple.  I also have some plaid Converse All Stars.

I'm not a fashion plate and probably the last person that should be giving out any fashion advice so step away from the suggestion box.  I won't be trying to dress people any time soon unless they are in my family and try to wear navy with black, ugh.

List of pissed

Yes, you read that right.  This is a short list of things that piss me off.

1.  I can't run.  There was a time when I didn't want to run.  I didn't understand why anyone wanted to do it for fun and now that I can't, I want to.  I see people out running with their ear buds in, seeming like they are running away from all their cares and to top it off they are getting exercise enough to burn off all the pizza I want to eat.

2.  Exercise.  Everyone talks about how great exercise is for you, staves off various diseases, strengthens the body, burns off pizza (no I don't have a one track mind; stop asking - okay, since you asked I'll have pepperoni).  No this is for normal people.  For me it causes me to get shaky, wobbly, weak and worn out for the rest of the day.

3.  Memory or lack there of.  I forgot what I was going to say.

4.  People that assume you are just lazy for any number of reasons.  One I heard recently was that if you don't wear makeup you are lazy.  If you don't make all your own meals from scratch you are lazy.  If you don't mop all your floors weekly you are lazy.  If you wear sweats to bed and don't change into other clothes before leaving the house you are lazy...um true story not that I would ever do - that last week Thursday.

5.  People that think you aren't trying hard enough when you can't figure things out. Yeah, thanks for making me feel stupid again.  No I didn't just randomly give up.  No I haven't smoked a disproportionate amount of marijuana while binge drinking.  I have a free pass, brain damage and all.

6.  Profanity is frowned upon.  Okay, I get it.  You don't want your children dropping f-bombs because they spilled their Cheerios.  I try my best to refrain when I'm within the range of people under the age of 18, 16 tops.  Fact is, sometimes those are the only words that come out.  If I say I have MS Tourettes, fucking believe me.

7.  Fatigue.  Never feeling awake.  Feeling like I could sleep always.  Yeah, that blows.

8.  Dealing with the medical community.  There should be a personal liason that handles every medical pile of BS that comes down the pipeline.  Need a med renewed but your prescription has run out.  My secretary will handle that.  Need an appointment during the morning hours when you only have a nice, reliable vehicle every other week - secretary. Need a foot massage and some nail polish, my office girl will handle that.

9.  Cooking.  Look, I get it.  Cooking from scratch is good for me, for my whole family.  I do it a lot of the time.  It makes me feel like a dolt and it takes me so much longer than the average person; I swear it has to.  I have to look at the recipe over and over and over again.  I forget what I was doing, how much to measure, which ingredients I still have to add - blah, blah, blah, blah, blah.  Don't even get me started on cutting a recipe in 1/2 or doubling it.  There is a near 100% probability that I will forget to do the calculations on at least one ingredient.  I would live on peanut butter, fresh fruit, fresh veggies, sliced cheese and crackers - every day, every single day.  Change it up with some tuna fish, hard boiled eggs and Hot Pockets (pepperoni pizza - yes, I'm an addict, shut it) or actual pizza now and then and I'm good to go.

10.  Grammar.  Now I'm not perfect, of course.  It makes me crazy when people make grammatical mistakes that shouldn't have been made if passed the 3rd grade.  It's not that hard.  I'm not asking you to diagram sentences (*shutters*) or win a spelling bee against a poet laureate.  Knowing where to place an apostrophe in a contraction isn't rocket science.  You just put the apostrophe where a letter is removed (was not - remove the "o" and make wasn't).  Again, not asking a lot (not alot - see, two words).

11.  Not having the energy to ramble on about my other pissed list items.  Bah.

Later taters!

Legless MSer.

So there's these odd things that happen with MS.  There's blurry eyes after a hot shower, a finger that just feels like it wants to move, scalp that's divided right down the center with sensations that are different on both sides, just to name a few.

Then there's this:  I was laying in bed and it dawned on me that I didn't know where my legs were.  Now, of course, I knew in my mind where my legs were but it felt like they weren't there.  I moved them so I could feel where they were.  My mind made the connection then but what an odd thing to lay in bed and feel like your legs are somehow missing.

When I had significant back pain my chiropractor told me that I should lay in bed with my "hip stacked", they should be in direct line one on top of the other.  Every night that I have a little ache in my back I remind myself to stack my hips but I never know if one is leaning more back or forward without feeling my top hip.  It's just like I lose all sense of where my body parts exist once the lights are out.

I also have trouble walking in the dark, I do a sort of shuffle and try to grab the visual cues I can, digital clock, moonlight through the skylight, in order to just stay upright.  It's a proprioception issue and I suppose that may account for my other strange, detatched body parts feelings, too.

It would be an interesting trick, with Halloween looming, if I could make those legs disappear to those around me, just for the night.  May as well get a free costume out of this MS beast, eh?

1st down and a Happy 16th Anniversary!

My husband and I will be celebrating our 16th anniversary this week.  It's one of those "wow" moments where you feel like it couldn't possibly be that long but on the flipside feel like it's been forever.

Ever since we have been married my husband, born and raised in Ann Arbor, has been a University of Michigan football fan.  He also roots for the Lions and their track record is less than stellar but he's still a supporter through all the grumbles, groans, screams and frustration.  U of M has had its share of screaming at the TV moments in the last couple of weeks as well.

I always wondered why someone would tune in week after week, game after game, when it seemed like all it brought was lots of frustration, aggravation and considerable screaming. What joy is there to be had in that?

It dawned on me that I am like one of those teams to Jim.  Just six years into our marriage the MS symptoms started.  There were moments of not being able to walk much at all, lack of sensation down the entire right side of my body, loss of vision in one eye, cognitive decline, intense fatigue and on and on and on.  All of the ongoing symptoms and tests cause frustration that seems to not end, frustration for both of us.

I remain like those teams, though.  Faithfully being tuned in to, cheering with the victories and being supported no matter what.  I fumble and he curses the MS and then picks me up.  I speak in a jumbled mess and he quickly rewinds for the instant replay to make sense of what happened.  The fatigue beats me down and he calls for someone to fill in so I can take a rest.

He's like my coach and I want to do the best for him, too.  Its hard for me when I have a rough day because I know that causes him to struggle.  I know that a coach without a team is nothing and a team without a coach is nothing.  Thanks for being my coach for the last 16 years, Jim!

Maybe there is no tomorrow.

I've been thinking a lot the last couple of days about what makes up my existence.  I have a degree of MS that keeps me from working outside the home.  I have cognitive problems and a lot of fatigue.  I can't remember the last time I felt awake, like that normal I'm ready to take on the day awake.

House duties are the top of my list.  I cook, clean, do laundry, vacuum, etc.  There isn't much joy to be found in a pile of dirty clothes or that container in the back of the refrigerator with the unidentifiable contents.  I know this is my own fault.  I know there are people that really enjoy the process, like making a home that's neat and clean for their families.  I'm aware of the importance.  I do it because I have to, not because I like to.

I realize that there's this force of "I must do this" when you are out and about at a real job, too.  Work is work.  There are many many people that go out to their jobs every day with great joy and great purpose and come home tired but fulfilled.  There are likely more that do it because they need to keep food on the table and a roof over their heads.  This isn't a feeling reserved for the trapped at home types, I know.  Healthy folks can come home and relax doing something they enjoy after they get home, though.

Unhealthy folks sometimes can, too, but many times cannot.  Even those things we used to like to do can be stuck in the past with the rest of the things I can no longer do department.

My chance to go out into the real world and put my degree to use was slammed almost in reverse.  It's sort of an unknown potential shoved in the back corner of a closet knowing that some day it will just be tossed out because it serves no purpose.

People that deal with illnesses are acutely aware that the mundane things in life hold them back from other things as well (Got spoons, anyone?).  Though no one knows what the future holds, those of us that aren't healthy realize that this might be the only chance to do something, anything.

I volunteer at church and feel that it has real purpose.  I know I am called to the various ministries I help with.  I also know that the MS could rear its ugly head at any time and rip that away like it has so many other things (career, another child, ability to run and play and stay awake all day, etc.).  There's a sort of magnetic draw that says "you don't want any regrets".  If I wake up in a year and can't walk I don't want to be stuck with the "I wish I wouldas" but the "I'm glad I dids".

Aspertame will KILL you...and in other news.

There's an article going around facebook right now.  A Killer In Your Fridge ~ Sweet Poison… A MUST READ

Here's what snopes has to say:  FALSE

Let me say, I fully agree with what the article says for me personally. I think that snopes points out that the connections are one of those correlation does not equal causation, if that makes sense. Is there a study out there that actually links the artificial sweeteners to disease (I ask this out of real curiosity not to be cheeky)? I think that's more of the snopes point. I just don't want people going around accusing people of causing diseases in their body because they drink Diet Coke, for example, you know? 

Maybe I'm just sensitive about the subject because there seems to be no real link to MS and anything. They think there's a hereditary component, an environmental component and who knows what else. The medical community can't put a firm finger on what the cause is so they can't find a cure and I've been told that all kinds of things will "cure" my MS from drinking certain fruit juices, bee sting therapy, paleolithic diets, cutting out artificial sweeteners (though I never have used them except for the couple of times I got severe headaches), and on and on and on. Snake oils are everywhere. I just hate to see an article that claims that anything is the cause of disease, basically saying that it's a person's fault if they are diseased.

Are artificial sweeteners good for you?  No  How many other things do we do in a day or eat in a day that aren't good for us?  We have to be careful with the claims we make.  We also have to be careful not to judge someone else for the problems they have without knowing just how their body works.

Get Bento.

My daughter and I decided that a new school year in a new school building should also come with a new style of school lunch.

I found her a nice bento box with a bottom that freezes so it keeps the contents nice and cool for the day.  I've been thinking of neat things to include in the box but nothing too cutesy for my middle school tomboy.  I won't be cutting apples into the shape of stars or anything like that.

Going through our stash of healthy snacks tonight I realized I have some great starters. We have a dried fruit medley of cranberries, blueberries and cherries, flavored rice crackers, whole wheat and blueberry newton type snack bars, dried plantains, ranch flavored sunflower seeds, sundried tomato flavored almonds and our other more standard house fare of seasonal fresh fruits and veggies (right now we have grapes, apples, nectarines, kiwi and strawberries as well as carrots, mini colored peppers and celery).  I also make my own hummus, always have cheese sticks or slices or some kind, peanut butter is a favorite here along with pretzels.

Having never done the bento "thing" before, it should be a fun way to explore new things and there's built-in portion control.  I will have to pick and choose just the right things for my no-at-all-picky eater that still has a list of things she doesn't like (including the mini peppers and celery I mentioned earlier) and they also have to be braces friendly.

I hope I'm creative enough to make it work without making it boring.  I might have to jump deeper into the produce department, get a grip on some lesser known fruits and veggies though we are pretty well acquainted with that department since taking on the task of vegetarian dinners in June of 2012.

Wish us luck with our new endeavor!

The Birdcage "Bruise".

MS never ceases to perplex.  This morning I woke up feeling like I had a bruise on my forehead.  I couldn't remember doing anything that would cause it to feel that way.  After waking up, I realized that it was like wearing a birdcage hat, a sort of skewed bruising feeling going from the top of my head and down into my ear on the right side.

It hurt to wash my hair.  It hurt more to brush my hair.  The rest of the day was spent trying to keep from pushing my hair out of my face because I didn't dare put my headband on.  I'm trying to pretend it doesn't exist but, in reality, it feels like a dull ache - sort of.

I might be concerned if it wasn't like most of my other symptoms, completely on the right side like someone drew a line down the center of me.

We'll see how long this hangs on.  It's been about 15.5 hours now.  I guess 24+ hours is the magic number for calling it a clinical relapse.  On the other hand, the hormonal action is in full-swing and I'm sure that's attributing to all the weirdness of the last week.

This last week complete with the birdcage bruise and the couch cushion buffet is like a perverse wedding with a marriage of equally perverse symptoms that will surely breed more of the same.  I wonder what I can abstain from the keep the symptoms from multiplying.  Sorry, MS, this isn't working out.  We need to get a divorce immediately.  It's not me, it's you.

My MS is not her MS is not his MS is not...

I harbored a lot of anger and resentment for some time because there was a woman that I knew in passing that repeatedly asked me if I was going to have more children.  I dearly wanted more children but I had two miscarriages.  The first left me feeling numb from head to toe on the whole right side of my body.  The second left me with a bout of optic neuritis and blind in my right eye.  Both are resolved now but knowing how my body would react to those hormonal changes made the decision quite clear.

Still she pressed on and on week after week.  "My friend has MS and she has 5 kids and is doing fine."  I'm happy that your friend is able to do that, truly I am.  MS steals so much away from us that her being able to have that in her life is wonderful.  She pressed and pressed, even got to the point where she asked me daughter, 6 or 7 at the time, if she wanted a brother or sister.

I never spoke to her again.  That pissed me off to no end.  Blabber to me about my decision to not have any more children, even though it is not your business at all, blah, blah, blah, blah, blah - steam rolls out of my ears, but approach my one and only child and bring her into your selfish nonsense and you are dealing with mama bear.

Other than the marked clinical MS diagnoses [relapsing-remitting (RRMS), secondary progressive (SPMS), primary progressive (PPMS)], there are significant disease courses within those diagnoses that affect one's life,  Someone may have a PPMS, being completely wheelchair bound, unable to dress themselves but have no cognitive side effects and may be able to hold a job as a professor, for example.  Someone with RRMS may be able to run a marathon but have cognitive side effects that make holding a job impossible.

MS can affect speech, bladder and bowel function, mobility, strength, coordination.  It can cause intense fatigue, insomnia, depression (both from the aspect of dealing with the disease and damage to parts of the brain that control emotions), emotional lability (responding inappropriately like laughing at a funeral).

MS can cause others to compare you to a relative or friend that has MS and "Hey, they have 5 kids and are doing great!" or "My uncle was diagnosed and within 3 days his diaphram stopped working and he died." or "I have MS but it doesn't have me!" or "My friend was diagnosed when she was 24 and is 28 and is in a nursing home and can't do anything by herself".

Comparing one persons MS to another's is not like comparing the last time you had the stomach flu with someone else.  It can be as different as assuming that if someone says they have cancer that their course will automatically be the same as someone else even if the diagnoses are easily removable in-office skin cancer versus stage 4 pancreatic cancer.  Like cancers, not all MS is created equal.

Don't get me wrong, saying that you know someone else with MS and know what they have gone through it great, make the connection but don't assume that I am just like that person.  Don't assume that since they struggle with fatigue that they have been able to treat well with medications that I am just not taking the right things or don't know what I am doing with my disease course.  Yes, I'm happy that it works for them but I have tried several of the anti-fatigue meds and they haven't worked for me.

My symptom and disease management is between me, my doctor and my family.  I love to hear if there's a new treatment that works.  I appreciate being shared information.  I appreciate being thought of but if I decide that a treatment isn't right for me, a life altering decision isn't for me and my family, I would also appreciate if you could just see that not all treatments work for all people, statistically the standard treatments work on 30% off all patients (most non-MSers don't know that).  That's a pretty big failure rate, in my opinion and takes a big leap of faith to try them to begin with considering some of the side effects (flu-like symptoms that persist for months, injection site reactions, scar tissue build-up, liver damage, etc. ).  I took 12 rounds of chemotherapy over 2 years with potential side-effects of congestive heart failure or leukemia.

Luckily I went into remission.  My original deficits are still present but I had quickly gone from walking unaided to a cane and then to a walker and got a wheelchair for distances.  Most days I can walk unaided now.  I praise the way Novantrone worked for me but I know it doesn't work for everyone.  My MS is not your MS is not her MS is not his MS.  Please remember that.

Tastes like...old foam couch cushions?

Yup, that's me today.  I have this odd taste/smell and sometimes can visualize a round piece of old, foam cushion in the back of my throat.

It has been coming and going all day.  It's weird as all get out.  I don't feel like I'm choking or anything so that's a good thing.  It reminds me of the food aversions and the way food tasted while I was on chemotherapy.

I went through a two year cycle of Novantrone treatments every three months for the MS and I had so many food aversions, things that made me feel sick just to look at them, and food that just didn't taste right.  That's what this is like.

This follows a day of extreme fatigue, a day where I slept in, took 5 hours worth of naps and felt like I could still sleep more.

I have never had a real relapse so this is kind of a new and weird thing to me.  Could it be?  Who knows.

I was diagnosed back in 2004 but only had relapsy type syptoms after miscarriages, when my hormones were going crazy.  My cycles have been really messed up since the Novantrone so maybe things are going to rear their head again causing all the MS stuff to go bonkers.

We'll see.  Now to eat some peanut butter and see if the taste of old cushions will go away for a bit.  Yuck.

Summer skidding to an end.

It seems like there is a rush towards the end of summer.  It's coming towards me like a blur.  The flurry of summer trying to eep in all the last bits.

When I was a kid the week of the local community fair was the big sign that reads, "Back to school is right around the corner!"  That sign will be glaring just next week like some sort of get-your-fun-in-while-you-still-can beacon.

Stores are filled with bright binders, fun pencils, hand-held sharpeners, storage cases for holding all the bits and parts, shelves and mirrors for lockers, Trapper Keepers and similar style binders grace the shelves, almost begging parents to make the purchase while promising a year of mom not having to find the errant homework because it will surely be neatly seated in a folder clearly marked with a a subject name and next to a syllabus clearly pointing to due dates and times that will keep from the procrastination called I-know-it's-my-bedtime-but-this-project-is-due-tomorrow from every happening again.

This end-of-summer-let's-start-the-new-year trend of optimism comes beaming out of the stores with the new backpacks and pictures of happy-as-a-clam kids boarding the school bus in their new jeans and logo shirts advertising the latest and greatest toy, movie or video game with bright white shoes and laces tied up with the security of a prison. Everyone is put together, eager to learn and has charming, engaging and thought-provoking teachers.

This will be the best year EVER!

Moms have an ever-present knowledge that the second day of school will bring the crinkled homework in the bottom of the bag, Trapper Keeper left in the locker, open lunch boxes with discarded applesauce containers and crumbs trailing over the bottom of the backpack, lost pencils, a new shirt with a hole in in, dirty tennis shoes and a trail of random school "stuff" trailing from the front door half way to the bedroom.

Those necessary forms for emergency contacts, sports participation, field trips, medications, immunizations, etc., etc. that will continue ceaselessly ad nauseum for the rest of the year begin to trail in, getting lost between a soggy lunchbox and the floor of the bus.

We know that the back-to-school routine of getting up early and getting to the bus on time will be a struggle like it has every year in the past, though each passing grade has brought up a child a year older, a year more independent and a year less likely to play with toys on the floor of their room while they are supposed to be getting dressed.  On the other hand, transitioning from elementary school to middle school to high school comes with a shift of start times that makes everyone cringe.

We have promise, though.  It's a new year with new teachers and new challenges, new ways to improve ourselves and push ourselves and our children to be smarter, stronger and more competent.  We will all make it through this new year, crinkled papers and lost homework aside.

MS makes you stupid.

I guess it doesn't actually make you stupid but it does tend to make you do stupid things, make stupid mistakes and feel stupid.  It's not a matter of trying harder, being more conscientious, focusing on the task at hand in deeper ways.  It's just a plain matter of disease process in action.

I have missed exits when driving, ingredients when cooking, words when talking, where my feet are when walking.  I forget that I can't put my pants on while standing, phone numbers that I have called a ton of times, must-do tasks and things that I'm just not supposed to forget like my afternoon dose of a medication that I miss at least five times a week.

It's hard not to feel inferior to people with fully functioning brains.  It's hard not to feel anger and frustration at the daily challenges that this crap disease brings.  Imagine the last time you went into a room and forgot what you went there for.  Imagine standing there with a big question mark over your head and feeling crazy over the fact that you just can't figure it out.  Now add that to other tasks in your day, too.  

Imagine that you have four icons open on your task bar, five clear icons like email, internet browser, Excel and a calculator.  You want to check your email but click the internet browser first and then get frustrated and try again and click Excel - you see where this is going.

It's like making cookies and forgetting the flour and never realizing what the problem could be even though it looks very wrong.  Others wonder how on earth you couldn't just look at it and see a problem.  Welcome to MS.

Over and over and over and over again all day long I have these little mishaps.  It's known that these things are a huge contributors in the fatigue.  It makes perfect sense considering that it can take 3-4 times to accomplish a simple task and/or multiple times to fix mistakes that have been made.

So make me a dunce cap out of an orange ribbon and I will don it if I remember.

Sticker Shock - and it's not what you think.

It never ceases to amaze me that garage sellers, estate salespeople, antique shop owners, thrift store volunteers and any other folks out trying to make a buck selling things place kryptonite-proof stickers on their items.  There is a chance, don't you think, that someone buying that 25 cent widget might want to use it without damaging it first trying to scrape and peel and scour the bejeezes out the item trying to remove the remnants of tape?

There's an even worse trend of physically writing on items with Sharpies.  Now, Sharpies have their place, a huge place in my world.  I'm a fan in a big way but not when they are used to scroll a price mark on the box of a game, a book, a matte finish mug or figurine.  I don't like it when I see them on anything but at least when it's written on a shiny finish mug, a wrapped game, craft kit, or any other number of grab some rubbing alcohol and take it to the item without damaging it kind of thing, okay...you're forgiven.

I'm in the resale business.  I'm a sticker scraper, rubbing alcohol using kind of gal.  It would be nice if the tags would come off easily and I wouldn't have to bother with keeping a roll of paper towel and a bottle of rubbing alcohol next to my desk and hope and pray that the price actually comes off.

I've heard sellers say that they are worried that there will be price sticker swaps.  I get it but does the extra buck make it worth wrecking an item?  I'd hope that if you see value in an item at all that you would keep it unblemished by using these lovely little labels that actually come off when you try to remove them without ruining the area under the sticker.

You're trying to make a buck and so am I.  Let's be friends.  I'll happily buy your item if you don't write "DON'T BUY ME, I MIGHT JUST BE RUINED" on the item or stick a note on it that screams "NEENER, NEENER, NEENER - I'M STUCK ON HERE FOREVER!"

As you guys know, I stay home and do this very part time to make a little money on the side.  Throw a gal a bone here.

Sick and then sicker.

So I have this beast of a disease.  It causes daily bumps in the road and sometimes head on crashes with a fifty car pileup.  There's a laundry list of symptoms that I deal with but most of them I don't share with the general public and can hide because, let's face it, most of my symptoms are "invisible".

What those outside the MS realm don't know, other illnesses make the MS symptoms worse.  Monthly hormonal mess makes MS symptoms worse.  A day without a nap, rising outdoor temperatures and stress make MS symptoms worse.

I have had many times where my symptoms ramp up even if I'm not sick but others in the house are.  I can call foul but, let's face it, the referee has his back turned and the other team is going to win.  I have to play the game the best I can and hope that I don't get permanently derailed from gameplay.

For the 2 years that I was on chemotherapy, I avoided the general public for a couple of weeks after treatment, stayed out of the giant petri dish that some call an elementary school and just avoided situations that I could get sick and then sicker.

It's an odd thing to look at your life knowing that social, school, church and family situations could lead to more complications.  People know that shaking hands during cold and flu season can lead to passed on germs and potential illness.  Most people don't know that those passed germs could lead to increased fatigue, legs that don't want to work, just overall increase in symptoms in addition to the fight with the cold or flu for people with MS.

So if I say, "I have a cold" what I'm saying is "I have to blow my nose a lot, I'm extra tired, my tongue might spew something that doesn't make sense and I just need to sit down and find something to focus on that doesn't take much energy."  My cold isn't just a cold, it's a body slam.  It's something that you can't see when I blow my nose.  It's something I hide as much as I can, just like every other symptom.

Are you stalking me?

I just saw my blog stats and there have been over 2,000 views of my blog.  Interesting but I wonder who these people really are.

Do I have cyber-stalkers, virtual friends, old classmates, family, neighbors, people who I've never met peeking in on my little world?

I have been thinking all along, wondering if anyone cares about what I have to say.  I guess there are people out there that find this interesting.  Who are you?

"Ain't it a cwying shame?"

I'm not Madeline Kahn but I often think about this clip when I'm thinking about just how dang blasted tired I all the stinkin' time.

Madeline Kahn in "Blazing Saddles" - "I'm Tired"

Really, just really, does it have to be like this?

I want to be a real eBay seller, one of those that work 8 hours a day and make real money at the gig.  I make money here and there but I'm overflowing with stuff to sell and overflowing with dreary eyes, lack of focus and a need to just take a big ol' nap.

Sometimes I find myself just staring at the items and having no energy to go any farther. Maybe if I could find ways to make it easier, like picking up an item at a garage sale, paying my shiny quarter to the seller and then having it miraculously sold (for hundreds, of course) and shipped.

I don't see what that's such a difficult concept.  Time space continuum step aside for the new and improved sell-n-out!

The best of intentions are always running rampant as I lay in bed in the morning, planning out my day.  You'd think that I would realize by now that most of my plans will go awry by 9:30 or sometimes as late as 11.  Fact is, laundry, dinner prep, picking up around the house, vacuuming (when necessary), arranging play dates and figuring out what to eat PLUS getting things listed on eBay never ever fits into a 2 hour time frame.

This butt kicking disease has been my nemesis for 9.5 years now.  You'd think I'd know that, duh, not everything is going to get done.  I'm either eternally optimistic or drastically delusional.  I think the second one is at play here.

Happy Father's Day To My Dad!

My dad and I don't have one of those huggy and kissy relationships.  The first dance at my wedding was to "Don't Stop" by Fleetwood Mac.  We have always had a fun relationship with similar taste in music and movies.  We are very open and honest and aren't embarrassed by anything.  Though it may seem an awkward choice, I bought my dad a Guns N Roses CD a few years back.

When I was in high school I used to bowl a lot.  We used to travel out of state for bowling tournaments.  We would drive listening to Pearl Jam or more Fleetwood Mac.  We must have talked and talked about everything and anything but yet nothing in particular comes to mind, just the presence, the experience, the journey.

I always had a good relationship with my parents.  I didn't go through all the teenage bull that so many kids do.  We would sit and watch TV, listen to music, and chit-chat, again about nothing in particular that I remember though I remember clearly that no questions were off-limits.  I think that has made me the type of mom I am today.

Daddy's little princess was not something I would ever call myself.  When my dad was in a bad mood, though, I was always sent in.  Somehow, he was never mad around me.  I could defuse his fuse.  I was more like daddy's little tomboy, which suits me just fine.

Princesses don't play HORSE in the driveway, go camping, play in the dirt, chop their hair off to keep from having to brush it much, wear pants almost exclusively and own a closet full of t-shirts.  Tomboys don't own curling irons, hair dryers and makeup.

This tomboy is a different sort of daddy's girl.  I don't think he would have it any other way, either.  Love you, dad!

3, 3*, 3*, 3, 3

5th grade year in review:

I sorted a pile of Anna's schoolwork for the year into a big binder like I have for all the years before.  It's fun to go back and look at what she has learned and, especially, her writing and drawings.

She's a very good student, with all 3's and 3*'s on her report card (on a 1-3 scale).  Her writings are filled with flowery language, written just like she speaks.  When I read the things she has written, I can hear her voice, the inflections, the drama, the laughter and the quietness.

Sitting with smiles ebbing and flowing among all the giggles and face palming groans, I see the drawing of a classmate on the top of Mount Everest (labelled, of course) and again on the side in a hot air balloon also labelled "never ending" since she said she was "mad at him that day".  I guess she thought it would be best if he just flew away.  The mountain and balloon are scaling the side of the paper and a thin, green, shaded in line at the bottom of the page is labelled "ground".  There is a pie with a pretty face, girls with fancy hair, story problems that are filled with the names of friends and their adventures or misadventures as it sometimes is.

It's hard to believe that elementary school is over.  I remind myself that 6th grade was still elementary school back when I was her age.  On the other hand, I am also reminded that we started school when we were younger back then and I was also in middle school at her age.

Things change through the years but the evolution of self is fascinating.  I have found every stage of life to have its own unique sets of ups and downs and, more notably, joys and triumphs.  For 11 years I have gotten to be the mom of a smart, funny, unique child that has a perfect sense of who she is.  What a blessing!

Here's to putting elementary school behind (with veiled sadness) and marching towards the next new adventure.

20 Year Reunion?!

It's official.  I've reached that 20 year post high school graduate mark.  I don't know how that's possible.  Most days I don't feel much like an adult at all.  I mean, I handle the housework and the bills but I don't really feel grown up.  It's a family trait, I think.

It's definitely not a "you're only as old as you feel" situation.  If that were the case, I'd feel beyond grown up and living in a retirement home.  I'd fit right in except I think some of them might move faster than me at times.

Remembering back, and through all the years since, I never felt like I quite fit in.  I wasn't a cheerleader, a jock, a debater, a student councilman, a class clown.  I was an average student with decent grades but sort of blended into the background.  I had a small group of friends that I'm still friends with but even they will agree, we were sort of outsiders. Don't get me wrong, I love my friends but as far as high school went, we stood out as much as the paint on the walls.

From where I stand, I still feel like that girl in school.  People have lofty careers and live away from where we went to school (but I actually want to stay here).  I'm still simple.  I've been married for nearly 16 years.  I have one daughter (wanted more but that's a story for another post) and live just five minutes from where I went to high school.

I'm strapped to this multiple sclerosis and all the BS that comes with that and so I'm a homebody with a degree I never got to use, a slew of mobility devices and the wardrobe that doesn't look like I even graduated high school yet.  Most days I don't get out of my pajamas until noon and wear my hair in pigtails.

The idea of getting together is a fun one, though.  It's not like I feel like I shouldn't go or that I won't fit it.  After all, we went to high school for four years and though we had our little groups, that's what made up the whole of us.  The class of 1993 doesn't exist completely without the sporty ones, the nerdy ones, the brainy ones, the wallflowers, the troublemakers.

We will exist as a group with our successes and failures, the great jobs, the unemployments, the thriving marriages and the failed ones, the hair losses, the weight gains, the happiness and pains that made us who we were then and what we've become.

This is who we are.  It will be fun to see it all.

Stamp this one DISABLED!

It still feels like a scream sometimes and something that should be whispered and then explained.

I heard it's an American thing to ask others what they do for a living.  "So what do you do?"  We always await some lofty reply, some great job to go with a great life.  The American dream, I suppose.  Those of us without a lofty reply feel like we have to talk our way out of it.  Maybe that's why those outside of the states find this both rude and intrusive.  

"So what do you do?"  I'm disabled due to multiple sclerosis but I'm a stay at home mom.  I sell on eBay on the side.

DISABLED screams and yet quiets the person across from you.  No one seems to know how to respond to the thirty-something disabled girl, especially one that has a lot of outwardly invisible symptoms.  I have a couple of canes, a couple of walkers and a wheelchair and the word "disabled" seems to make more sense when it's uttered with those assistive devices in the area.

I was declared disabled when I was just 30.  Fatigue and cognitive dysfunctions were the kickers.  I'm always tired but when I'm overly tired or too hot or had too busy of a day, my speech is affected and sometimes I can't make the words come out at all.

I will talk (or write) my way around the absent words.  Thank God for a good vocabulary. When one word is strangely absent, I can usually find one to take its place.  Sometimes it takes longer than others and sometimes it ends up in a frustrating game of charades.

Apparently an employer can't function with someone that naps randomly, loses focus and cusses at random when the substitution dictionary has been lost.  So, here I am.

How old will I have to be before saying the word "disabled" comes easy.  It's not hard to say, "My grandma is on disability."  People also get it.  If I say, "I'm on disability" it's like there's a stutter in the conversation.  It can feel like you have a stamp on your forehead and everyone around you whispering, wondering what's wrong.  "What on earth is wrong with her?  She looks too good to be sick."

I feel like I need a bumper sticker on my car that says "I have multiple sclerosis" so the handicapped plate makes some sense to people that look at me.  Maybe I would also need this sticker:

Grandma's Birth Story.

My great grandma bled for all 7 months of her pregnancy and gave birth to a premature 1.5 lb baby in 1928.

She was born at home and was delivered by her own grandma. She was presumed dead and put in a cigar box and set in a cold, back kitchen. My great grandma insisted she heard a baby cry and to appease her, the cigar box was brought back to her.

The baby was crying. She was itsy bitsy tiny, had no fingernails and you could see through her eyelids.  She could fit in her mother's hand.

She never went to a hospital. It was later found that babies born at such a small weight that were hospitalized went blind due to the oxygen concentrations in the isolettes.

The baby was fed with an eye dropper and lady's hankies were used as diapers. She survived and thrived. She is 84 today.

Ebay Dos and Don't.

I have items in my store that have been there for some time. It's okay with me.  I understand there's a niche market and hope to find just the right buyer as time passes.  I have a store so I list most of my stuff there and use the best offer option on them so people can make fair offers and I can happily collect my money and send them off their treasure.  Every now and again I make my own little glitches and customers try to make bumps in my road.  Here's a little list of dos and don't.

Do:  Buy great, unique, special, worth big bucks items for cheap and resell them.
Don't:  Buy crappy, broken stuff and crab when no one wants the stocking with a name already on it.

Do:  Act professionally to all customers, even the ones you feel deserve a kick in the face.
Don't:  Type what you are thinking and hit send.

Do:  Scrounge for free packing supplies even if that means dumpster diving for boxes (best to ask the store owner before you do this).
Don't:  Wrap a matte finish widget in newspaper and then be surprised when the newsprint wears off and damages the item.  We are trying to sell items not recreate a Silly Putty adventure.

Do:  Research the cost of shipping items before buying something whose shipping cost outweighs the value of the item.
Don't:  Offer free shipping on 12 lb. items shipping to China.

Do:  Offer a reasonable shipping cost for your items.
Don't:  Charge $15 to ship a postcard - jerk.

Do:  Look in boxes and under tables at sales.
Don't:  Jump with excitement when you find a Gucci scarf for a quarter (yes, true story - sold for $97.50).

Do:  Open your items up to a worldwide market.
Don't:  Be afraid of international shipping.

Do:  Stay in your pajamas as long as humanly possible while listing.
Don't:  Complain that you had to put on real clothes to go to the post office because people that have a "real" job get pissy about that.

Do:  Have fun with it!
Don't:  Let a negative feedback ruin your day, month, year.

Do:  Use best offer.
Don't:  Wonder why some items haven't sold and then realize that you actually never added best offer on that item sitting in your store for 5 months (fixed a couple of those tonight - oops!)

Do:  Share your eBay items:  My eBay store - sell-n-out/collectibles-n-store
Don't:  Forget to share them with me!

Christian artists, listen up!

First off let me say that I've given the Christian radio stations a chance time and time again.  I think "maybe this time I will hear something inspiring, something I will really like".  I struggled through one song and try to make it through another and I cave.  

Don't get me wrong, I believe in most of the lyrics but some of the songs are so boooooring and lyrically unimaginative.  I might be impressed if the songs were written by 2nd graders but they aren't.

I'll listen to 80's era Petra (though surely some of those lyrics are equally uninspired and cheesy).  I like Johnny Q. Public.  I like some Steven Curtis Chapman.  I haven't found much Christian music that really makes me think.

I dub myself a lyriphile (lover of lyrics).  If you don't say something I haven't heard a billion times, I'm not likely to like your music (dance music is excluded just because it's dance music, that's all).

My favorite artists are Toad The Wet Sprocket (Walk On The Ocean), Crowded House (Fall At Your Feet, Better Be Home Soon), The Cure (Pictures of You).  

If you know any Christian artists that write music like that, I'd love to know about it.

From Pictures of You:

Remembering you, how you used to beSlow drowned you were angels, so much more than everythingHold for the last time then slip away quietlyOpen my eyes but I never see anything

Petty MS Annoyances.

Let's put the chronic, incurable, debilitation disease aside for a moment and focus on little, stupid, annoying MS things.

It feels like I have sunburned feet tonight.  I keep looking at them thinking that they must be burned and see the pale, white skin, barely touched with sun.  Over and over in my head it rolls and I keep reminding myself that my feet only saw 10 minutes, tops, of sunlight today and about the same yesterday nevermind the fact that they aren't actually red.

Sometimes my pinky fingers feel numb, like if I didn't know I had pinky fingers I wouldn't know they exist.

I have the odd, invisible line on my body from the top of my head to the tips of my not-sunburned toes that divides my body in half.  Left side, normalish.  Right side, not so much.

Silverware is not always safe around me as well as my fellow diners.  I have flipped many a fork or spoon right out of my hand and across the table.  This has happened with writing utensils as well.

If I stand so I feel perfectly balanced I have to put so much weight on my right side that I nearly tip over.

It's hard to walk with ice packs strapped to your feet and it's hard not to look like a complete dork with the freebie cooling vest filled with ice packs strapped to your body.

My vision and balance are affected by the heat.

I get random bouts of nausea and vomiting.  I'm not sure if that's the MS, though, or a mild version of Cyclic Vomiting Syndrome (yes, I'm into self-diagnosis now, too).

It's hard to find shoes that feel normal with abnormal feeling feet.  Avia and Birkenstock are my favorites!

People act jealous that they don't get to take a nap during the day.  "Boy, that must be nice."  I read a shirt that said, "A nap is only nice when it's a luxury not a necessity."  Boy it must be nice to be able to stay awake for a whole peckin' day.

I would love to be able to work on eBay sales like a full-time job, heck a part-time job would do.  My goal is to work on it an hour a day but I don't often make that goal, either.  I'm just too tired.

Well there's surely more.  Anyone else have some to share?

Intense Anguish and Lavish Joy.

A year ago my cousin lost his beautiful wife, Megan, to preeclampsia and HELLP syndrome.  It seems so foreign and unreal that in this day in age, with these medical advancements, that these things can even happen.  I have thought so many times over the last year that this simply cannot be real.  How can it be real? These things just don't happen.  This motherly life was supposed to bring the greatest joy to their little family. This tragic death brought the greatest pain that a parent and a spouse could ever know.

In the midst of this bone-crushing pain was a perfect little girl, born 5 weeks prematurely but so proportional, so strong, so beautiful, laying in an isolette next to a so-broken daddy who never looked to have so much love in his whole life but utterly torn all at the same time.

This past year has grown a child from needing the support of machines into a walking, jabbering, giggling, smiling little girl.  It has also seen a man at the absolutely lowest breaking point to a man with the strength that would  seem otherwise unattainable.

I've thought so much about Megan's mom and how the last time she spent with her dear daughter was last Mother's Day and how that must just tear her heart and prayed that she can find joy in today so tragedy won't forever overshadow her joy of being a mom.  I've thought about her dad, her sisters, her brother, her nieces, nephews and friends.  I've mostly thought about my cousin, Travis, and how he has managed to get through this year with such grace and composure, putting everything he has into being the best dad he can be.

I pray that you all have the strength and peace to get through this day, little Annaleigh's birthday, Meg and Trav's anniversary and Megan's birthday that are all so close together. May you find a way to rejoice in the time you had and share more fun and laughter than tears.  Bless you all!

Coloring Crayons in Church.

I was diagnosed with multiple sclerosis in November of 2004.  At the time, I thought my focus problems were more from having to deal with a toddler and just being preoccupied with "mom stuff".  A couple of years passed and it seemed I could sit through an entire church service and leave not remembering anything that I had heard.  MS brain, yup. Mommy brain, yup.  Frustrating, absolutely.

At the time I had resigned myself to the fact that this was how it was going to be.  I didn't see a way to fix my focus problems and jolt my brain into remembering what was said. One day my daughter had a coloring book in church and I grabbed a crayon and started to color along with her.  I didn't think anything of it at the time but when I left I realized that I remembered some of what I had heard.

Sundays came and went and I continued to color alongside my daughter.  My brain settled in to a comfy place where there was a sort of brain fractal where I could shut off all the awkward buzzing of people moving in and out of church to get coffee, use the bathroom, rescue the nursery staff from a screaming child, a random cough or other such distractions.

I bought myself some very detailed adult coloring books on Amazon (forewarning: searching "adult coloring books" brings up some searches of an awkward, maybe unsavory nature but, unless you are unfamiliar with human anatomy or blush at the sight of black-line drawings of girly bit and man bits, you should be okay if you come across the select few among the multiple books).

You can get books on geometric designs, paisleys, floral arrangements originally done by famous artists, Chinese dragons, artwork from famous theatrical signs, Renaissance clothing, Tudor houses, architecture, landscapes, famous historical figures, animals and on and on.  I also bought a box of 120 crayons and a crayon sharpener.  I use the sharpener all the time since the books I chose are very detailed.

I color every week.  I remember the sermons.  Who would have thought that focus would be found at the bottom of a crayon box?

Things I learned from my mom (partial list of infinite teachings).

Faith in God.

Death comes with a feeling of warmth, security, peace and an eternal promise (Praise to God for sending our mom back to us!)

Unconditional love.

Strength through adversity.

Knowing that my illness will only make my child stronger, more compassionate, more understanding and more able because I went through the same things as a child and that is who I have become.

How to laugh until you find it hard to breathe.

A mom can be much more than the mother figure, she can also be a wonderful friend.

Commiseration is just a phone call away.

It is possible to talk for hours and hours with no breaks, no awkward silence, no direction or path and enjoy every minute of it.

You can have fun for two with just $5.  That is less of a mathematical fact and more of an inside joke.

Mom, I love you.

"So You Think You Can Dance"

One of my favorite shows is "So You Think You Can Dance".  These are dancers that really can dance.  I have no interest in watching B-list celebrities try to dance on "Dancing With The Stars" even though I do find it amusing that some of their "professional" dancers are ex-SYTYCD alums.

I have had so many dances I have loved over these many years and like my last post, there are songs I hear on the radio now that I always associate with a dance.  Beware - I share.

David Bowie's "Fame"

Alex Wong (specialty - ballet) and Twitch (specialty - Hip Hop) "Outta Your Mind"

Melanie and Neil to "Total Eclipse of the Heart" keep your eyes open at 1:17

Lauren Frodeerman and Kent Boyd "Collide" and an unscripted kiss at the end

"Ramalama (Bang Bang)" - zombie dance

Lauren Froderman and Tadd Gadduang "Another One Bites The Dust"

Janelle and Dareian in "My Girl"

There's lots more but I don't have time to look them all up tonight.  I'll keep adding.

When I hear ____________, I think of _____________.

I enjoy movies and I enjoy music and some scenes get so deeply ingrained that separating the song from the scene is impossible to me.  It's like they have been permanently spliced in my brain.

Tom Petty's "American Girl" and this scene from "Silence of the Lambs"

Kansas' "Dust In the Wind" and this scene from "Old School"

Diana Ross and Lionel Richie singing "Endless Love" and this scene from "Happy Gilmore"

Spandau Ballet's "True" and this scene from "The Wedding Singer"


Now there are a lot more that show up in music/dancing movies but I didn't count those and, besides, instead of posting 47 links from "Dirty Dancing", I think it would be faster to just tell you to watch the movie.

I'm sure there are more that I will think of later but this is a good start of the songs that ALWAYS pop movie scenes into my head.

Odd and scary expectations.

I have a couple of things that I always expect.  These aren't normal expectation.  These are those um, really? expectations.

1.  Every single time I start to open the door in a public restroom, I expect that I will find a dead body.  Even more odd, I expressed this to my mom and she said she has the same thing.  I always wonder if it's a way of preparing me for something I will inevitably face or if I'm just messed up in the head.  Of course, like so many things, these are not mutually exclusive.

2.  Whenever I see someone drinking from a drinking fountain or drink from a fountain myself, I have images of some bully shoving faces into the spout, causing tooth loss, blood letting and pain.  Yes, again, I may be a little messed up.

Dragging butt to bed and sleeping fatigue day.

My day started pretty well for the first half hour.  I got up, made my daughter lunch, signed her agenda and said goodbye while eating my banana with peanut butter, drinking milk and taking my morning pills.  I felt pretty normal, my always tired but still functioning normal.

I fought the fatigue thinking that some tea and general movement would do the trick to keep me upright.  I was wrong.  By 9:30 I was in bed and slept for a couple of hours.  I got out of bed only because it seemed like I should eat.  Lunch was a toss together easy to grab stuff out of the fridge (1/2 red pepper, part of a carrot [cut from meals last week] and a mini cucumber with a few slices of hard salami and some pretzels along with the obligatory Mountain Dew).  The Mountain Dew was surely the trick to keeping me up for a whole hour and a half before I was back in bed again for 3 hours.

My dear husband picked up Jimmy Johns subs after I called and gave him the I'm still laying in bed and there's no way I can make dinner chat.

This, my friends, is fatigue.  If someone with MS ever tells you they're tired, don't say "I get tired, too", unless, of course, you also have MS or some other debilitating disorder and truly understand.  I've heard the need to sleep with MS referred to as taking a "death nap".  That's the best description I have ever heard.  This is the sleep is not optional, lay down before you fall down kind of tired.

It's the I pissed away my whole day in bed with last night's pajamas on kind of tired.  It's the if I smell bad it's because I was afraid I'd fall down in the shower kind of tired or I'd fall asleep in the tub and drown kind of tired.  My tired is not 5 Hour Energy will cure it tired or a 3:00 coffee break will get me to closing time kind of tired.  My tired is the wow, you took meds that they give to narcoleptics and still fall asleep tired.

Fatigue is a different ballgame, folks.  Everyone strikes out and there are no winners. Worst.  Game.  Ever.

P.S.  Here I sit writing this at almost 11pm and I felt better than I had all day starting about an hour ago.  Go figure.

Ups and Downs - Literally

I make it through my days with ups and downs.

Get up to do laundry.  Sit down and check email.  Get up to put laundry in the dryer.  Sit down and rest.  Get up to get the laundry out of the dryer.  Rest some more.

Up and down and up and down and then drink some Mountain Dew to get to naptime.  Up for lunch, down for a few hours, up for dinner, down to play some games online and rest.

When I was first diagnosed with MS, the ups and downs drove me positively crazy.  I tended to push too hard and then pay for it the next day or two.  I didn't quite know how to pace myself and maybe it was me being less receptive to the idea and just not wanting to accept having to take it easy.

I was only 28 when I was diagnosed.  The idea of having to slow down while having a 2 year old was, well, almost unfathomable and seemingly impossible.  On the other hand, not slowing down leads to severe fatigue, balance problems, eyesight problems and on and on and on.  Having those problems exacerbated makes taking care of a toddler much more difficult so we adapted.

This all leads to emotional ups and downs along with the medical ups and downs and the physical ups and downs.  There's the jealousy and desire to be like other moms.  I feel like I let my family down when I can't be the person I want to be.  We all know that this isn't a choice, but that doesn't change that I can't be who I always thought I would.

There's a sense of unfulfillment that comes with not being able to go out into the world, utilize my education, make something of myself beyond being the stain remover and dishes washer.  I know those things are important but it feels lacking.  I tend to go through phases where I get a bit upset about what this all means.  It feels trapping.  Not only am I stuck in a body that will inevitably worsen, but I'm stuck here tying to find fulfillment in things that aren't that fulfilling.

MS is like a teeter totter.  Sometimes you're up, sometimes you're down and sometimes the jerk on the other end jumps off and drops you flat on your ass.  Ouch.

In the world of real life selling, this is not allowed.

I'm going to tell you right here and right now that it's not okay to copy a page of a completed eBay listing and put it under an item that you are selling at your garage sale, a thrift store, an antique shop, a flea market or an estate sale and base your price on that listing.

I saw it again today, there was a wooden rolling pin with an eBay listing taped to the table next to it as if to say  "SEE HOW MUCH THIS SOLD FOR ON EBAY!?  YOU ARE GETTING A GREAT DEAL!" Well what I see is someone that wants money but doesn't want to put the work into selling it.  I also see someone that wants big bucks for something that only 100 people will walk by in their store but the item that sold online was potentially viewed by a worldwide audience and people who actively searched to find the item.

I am a seller.  I've been doing this for over 12 years.  I'm not near as experienced as a lot of sellers as I am only a part-time person doing this out of my house but I have shipped over 9,000 items so that means I know a little bit about what I'm doing, at least I hope so.

In the world of real life selling it is also unacceptable to complain if you see someone scanning a bar code (hijacking my own post for a moment)

I was at a thrift store once and the ladies behind the counter were complaining about "That guy that comes in here and scans bar codes so he can sell the books on the internet!"  Put up or shut up.  If you aren't going to do it yourself, why do you care?  You got the books for free, after all.  It's pure profit for you.  You are just being petty that he's going to make money off the books you sold.  You can do it yourself if you want to. Amazon listing is easy peasy.

(/hijack) In the world of real life selling it is also unacceptable to complain if you see someone scanning a bar code or looking up an item to see if it's worth selling (although my "dumb phone" couldn't begin to be that technical.  I'm still going strictly off instinct, prior experience and a mother addicted to antiques).  If that person is not making you unreasonable offers ("Will you take $2 for that mint condition Civil War jacket?") or piling all your items up and not letting anyone look until they have scoured the entire internet looking for a gem in a junk pile, be happy.

If I pay you the quarter you ask for an item and you find out I sell online it is not okay for you to be pissed about it.  You took it outside,  put it on a table and put a price tag on it. Once I buy it, it is mine and I can do whatever I want with it.  Don't act like I'm stealing from you.  It's stupid and makes you look like an idiot.  Be happy it's out of your house.  Curse yourself out later when you find that you sold an item worth $100 for a quarter.  It's your fault, not mine.

This public service announcement was brought to you by the National Society of Don't Give Me That Look.  Teaching the world to smile at the dime in your pocket and don't frown over the $50 it's going to put in mine.

Like a diary without a lock.

I don't feel interesting like other people that blog.  It feels like I'm just jotting down randomness like an old-style diary left open on a kitchen counter just begging to be read out of curiosity if nothing else.

Maybe I need a focus.  I could share my deep insights about the bitch that is MS but I'm sure not everyone wants to hear me complain every day.  I could write down the best parts of each day and create a little book of cyber sunshine but then I might have to fly a unicorn into the ether.  I gag a bit at the thought and who wants to read that.  It's like the Facebook plague of everyone writing about the most brilliant pieces of their lives leading those outside that existence to feel like failures in some way.

On the other hand, if every Facebook status update was about not paying your bills on time, having failed relationships and kids on death row, well that would put an end to cyber surfing in a hurry.  We'd all turn to drinking, excessive pill taking and just sit on our couches watching reruns of Jerry Springer, God help us all.

I could blog about my fascinating existence as a disabled homemaker.  You want to know which socks don't have their matches this week, don't you?  Maybe I'll share about how just when I think the day might go okay, I get nauseous, throw up and need to sleep.  Ah, that's it.  Voracious Vomiting, news at 11!

So, if anyone is out there reading, what would you like me to share?

Go Bessie, Go! 164,000 Miles and counting.

I thought of Da Yooper's song "Rusty Chevrolet" while I was driving my van today. ( http://www.youtube.com/watch?v=50IgzksUqpQ )

It's a beauty.  The best thing about it is that the engine runs like a charm.  Even on the coldest winter days, she would start up right away.

We will have to replace it someday (likely soon than later) and I keep joking about how the Craigslist ad would go.  Would we write about what still works or what doesn't work anymore?

It's got quite a bit of rust on the sliding door on both sides of the van.  We tease that every time we shut the door the van depreciates (because more rust falls off).  The back hatch leaks, the left hand turn signal works occasionally but the windows work consistently so I can roll the window down to hand signal, the CD player works about 2% of the time (I don't know why I keep trying), every so often we lose all of the gauges on the front dash, the muffler is falling off, the tumbler on the ignition is worn, the speakers go in and out so it seems like the volume fluctuates and that sound is coming more loudly from different parts of the van.

I'm sure there's more but those are the biggest things other than the fluid leaks (no gas at least).  We plan to drive it until it won't drive anymore.  Anyone want to take any guesses on the life and/or of my 1997 Grand Caravan?

Donate Your Good Stuff...Please.

Yes, I'm one of those people, the one that can't throw anything away that I think could be valuable to someone else.  I'm not extreme about it, though.  When we moved my grandma out of her house we found washed out yogurt containers and packages that deli food comes in all neatly stacked in her cupboard, wool socks with holes in them in a cedar chest, boxes and receipts for items purchased in 1983, tiny scraps of fabric saved because "you never know when you might have to cover a button".

You'd think I was a hoarder the way I talk about saving things.  I assure you, I'm not.  On the other hand, my propensity towards saving things can be a bit obsessive.  It drives me nuts to see things thrown away that someone else could use.

I love selling on eBay because I can take discarded treasures and put them in the hands of people that appreciate them, often times making a bit of money in the process.  That's a good incentive, too!  It tickles me to no end, though, when I get an email from a customer sharing what they plan to do with the treasure, why it means something to them and how happy they are to have it.

I donate a lot of stuff, too.  I don't like clutter.  I go through closets and drawers and purge things that are no longer useful to me and donate them to organizations that have thrift stores.  It's a win-win-win.  I declutter, the item gets sold by the organization for money that they use to fund their ongoing projects and their customer gets a deal.

This was spurred because I was driving in my neighborhood on trash day and saw a pile of folded clothing on top of the trash.  I pulled my van over, looked around to make sure no one was watching (not because it's illegal or anything, just because it's a little weird I suppose) and loaded the clothes through the side door and drove off.

I knew I wouldn't be able to use it all but I also knew that I could donate what we couldn't use.  My husband got a shirt to wear, I got a shirt to wear and eBay will be getting a nice XXL fleece vest in great condition and the rest will go to a charity.

Do me a favor neighbors, before you throw things out, just drop the boxes of stuff at my door.  That will make me feel a lot better.

Prayers for Boston and a New Numb

Another terrible moment in our history happened today at the Boston Marathon.  Those moments that are supposed to be a part of a collective joy and a moment of athleticism and pride, doing something that stretches human physicality while others look on from all around the nation wondering who will be the winner and so many others who will be a their own winner for just making it through.

In an interview today I heard that this will now be a tainted event.  It will never, ever be the same.  There will always be this shadow surrounding the race, the place.

As with all the tragedies in my adult life, I have been numb to them in a way.  I can't begin to comprehend the moments when these things all happen, the motivations behind the events and even the way the families deal with the tragedies, both the families that were spared and have their loved ones at home and the families that will never have their loved one home again.

I feel distant, like it's a dream.  It seems so surreal and incomprehensible that I turn on the TV, see the news, see the people, hear the testimonies and it still does not seem real because my mind does not want it to be real, it can't be real.

Sadly, I know it really is.  Prayers have to be enough.  It's all I have.

Slowly Slipping.

It's my grandma.  Sometimes she knows me by name and sometimes she calls me Jennifer or Eric.  She seems to understand who I am when I tell her my name but I know that it will slip away completely someday.

Yesterday she knew who I was by name.  I shared a box of her pictures with her.  She saw pictures of my grandpa, the guy she refers to as "my husband" but that she doesn't remember at all.  She knows who he is because others have told her but she doesn't really know and replies "ain't that crazy?!"

"The brain works in strange ways."  "You had a brain tumor removed and some of the memories were lost."  "You had chemotherapy and radiation.  That does strange things to your memories."  Then she asks again, and again, and again 2 minutes later.

I think about her sitting alone and having these partial memories in her head that taunt her by being almost there but just outside her grasp.  She does crosswords and Bent & Wiggly puzzles but does little else.  She can't hear well so doesn't watch TV or participate in activities that are available to her.  I worry that she gets trapped in the almost-memories and that it hurts so much to not know where they have gone or if they will ever come back.

After spending an hour and a half with her yesterday during which time she kept mentioning her daughter, my mom, and asking for her name.  "Char", I said as odd as it is to repeatedly refer to your own mother by her first name.  She asked me if her daughter had any children.  "Yes, me (pause so she could take that in) and Jeremy."  "You're Char's daughter?"  Yes, grandma, yes.  It clicked and it came back to her but I know one day it won't.

"I get so confused", she says.  I know, grandma.

Sex Ed in an Over-sexed World

[Thank you, Lori and Janice for your discussion tonight.]

Everything from vacations to pop brands is sold with sex.  Yes, sex sells.  We all know that. It's not so much fun explaining to our children why a woman is lustfully looking at a Diet Pepsi can or why a woman in a bikini is selling car wash products.

These aren't commercials saved for late-night viewing alongside more adult shows that are on after the prime time hours.  I am surprised that I haven't gotten the question about erectile dysfunction yet, but I'm sure the question will come up (no pun intended).

We have kids still in elementary school fully physically capable of creating children.  We need to protect that.  We have a culture that has cell phones with texting capabilities in the hands of 8 year olds.  I understand the propensity towards allowing kids the access to technology but having these unguarded it absolutely absurd to me.

I hear about 5th graders texting in class, kids under the legal age to have Facebook accounts with their information out there for the whole world to see, kids testing drugs, alcohol and sex before they even reach high school.

It's time for very open discussions with our children about how harmful all these things can be.  We don't live in a utopian society where these things won't happen to our kids.  We have to be smart.  We have to be honest.  We have to speak up and be the voice that our children hear.

We have to be the ones that guard them.  Use parental controls on your computer.  Don't let your child access the internet alone or in another room.  Your 10 year old does not need a Smart Phone.  If you feel they need a phone, get them one that restricts them to calling home, calling grandma and calling 911.

Be direct about the changes your child is going through.  Be gentle and understanding but make sure you let them know what kind of responsibility comes with those changes and the peer pressures they are going to face, if they haven't already.

It's time to be your child's best advocate, best teacher, and no longer hide because the discussion is embarrassing.  Tough luck.  You chose to be a parent so "man up" and take your opportunities to protect your child the best way you can.  They say "knowledge is power".  Empower your children to live the best life they can, with you by their side guiding the way.

Reading through the tire tracks.

Well, I found yet another paper in yet another place that a paper should never be delivered.  This time it was under the wheel of my car.  Everyone likes a challenge but retrieving a paper I don't even want to read is definitely not one of them.

I decided to email the paper and let them know how I feel.

I receive a small snippet of the paper along with the Advance every week.  I live in ___ in ___ and unless you can somehow get the carrier to not leave the paper under the car, behind the tires of the car, in the bushes, in the middle of the snow in the front yard or anywhere else that I either can't find it or it gets ruined before I do, I would appreciate that the paper no longer get delivered to me.  My address is ___.

I'll let you know if I hear anything.

Thrifty Tips

I've been reading up on Dave Ramsey's style of financial successes and love everything I have read.  It is very inspiring.  I was so excited to see he had a page on saving money in ways that people don't usually think of.  Boy oh boy, let's dig in.

He talked about buying clothes second hand at thrift stores and/or garage sale - Been doing that for years.

Buy used cars - check

Shop the grocery ads and stock up when items are on sale and use coupons - thrifty chick been doing that for a long time, too.

Make meals at home to save money and eat better - fridge is stocked with veggies and the recipes for the week are ready to go.

Cut the cable - we had thought about that for some time and now we have done it and are just as happy with Netflix, Hulu Plus and Couch Tuner.

I was sad to see that there was nothing new for me to apply to my life.  We decided before we were married that if/when we had children one of us would stay home.  We knew it would take sacrifices but couldn't be happier that we made that decision.

I had planned to go back to work when my daughter started school, but the MS diagnosis and the symptoms that come with it forced my hand and I remain at home, unable to work.

These things force you to look at life in different ways and have to make financial changes to make them work.  I am very happy thrift store shopping and even turned my thrifting into a little side business on eBay and Amazon.

Do you have any thrifty tips to share?

A Prayer for a Jumper

We woke up in our hotel room on Wednesday morning and when we peered down from our hotel window we saw police cars blocking off all the small roads around the falls, fire engines coming down the streets and even an ambulance.

Gawker's curiosity set it and it became almost an obsession as we kept looking down trying to figure out what was going on.  Anna had some convoluted story about a homicide.  I thought there must have been some sort of fire since there were fire trucks and Jim wondered if a car had gone off the road.

After breakfast we ventured down Clifton Hill towards the falls and reached an officer in the park that pointed out a speck of a man in the distance standing over the guard rail on a small piece of land that juts out near the top of the falls and said that he was threatening to jump, had been threatening since around 6 am and it was around 10 at that time.

It was bitter cold and near the falls there's a lot of spray from the water.  He must have been miserably freezing and what a tragedy that this was the option that he saw was better than life itself.

I have taught Anna about opportunistic prayer, times to pray for others when you hear about something on the radio, see a car accident or, in this case, hear about someone so desperate, so lost that they feel that jumping to their almost certain death is easier than thinking about heading back to a life that they feel they can no longer continue to live.

So I said a prayer inside my head praying for their peace, that they would realize their life was worth living, that God would show them the strength they needed to get through whatever made them feel that this was the only option.  I later found that at noon he had come back from the edge and was safely taken to a hospital.  I fear that he was in terribly pain due to inevitable frostbite and whatever else may come from a 6 hour standoff in those conditions.

I continue to pray for his well-being both physically and mentally.  I hope he can find a place of peace.

RnR+RnR

We just came back from a trip to Niagara Falls.  It was windy and it was cold but it was a good time.  It was beautiful, especially our view from our room on the 41st floor of the Hilton hotel.  The night time view added an entirely new perspective with the lights on all the buildings, changing color lights on the casino directly across from us and the falls were even lit up.

During our trip we saw the falls, the whirlpool, some vineyards, a Buddhist temple, the Ripley's Believe It or Not! museum, Bird Kingdom and many of shops and even an arcade.  We had a great visit with an online friend over dinner at the Brasa Brazilian Steak House that ended with hours of chatting while overlooking the bright lights of the city night from our hotel room window.

All in all, it was a great trip, some nice rest and relaxation.

Unfortunately, with that kind of RnR always comes the necessary RnR, return and recovery.  We made it back safe and sound before Wednesday evening turned to Thursday morning.  For the recovery I slept in and took a 3 hour nap later.  We'll see how the recovery continues tomorrow.  Maybe I'll change out of my pajama pants tomorrow...probably.

Bye, bye birdie.

We had our second gorgeous spring day here in Michigan.  It was sunny and warm and you could hear the birds chirping.

Unfortunately, there's one less bird chirping tonight because I hit a bird this afternoon.  I'm sure this isn't a just-here occurrence.  No matter where you live, if you drive you've hit an animal of some kind, right?  I've hit squirrels, birds (the ones that bounce off the car and the ones that you have to convince a courageous male to pull out of the grill when you get home), skunks, opossums, rabbits, badger and most notably, and more specifically, a duck.

It was, by far, the most disgusting and absurd kill I've had.  I was driving down the road and the duck flew and hit my antenna.  No, that's not the disgusting part.  The part that was really gross was that its head detached from his body and the tendons in his neck cause the head to literally wrap around the antenna.  It was one of those, "holy crap, what just happened?!" moments.  I looked at the duck head dangling from my antenna wondering if I should drive home and let Jim take care of it later (no, far too gross to let sit there) or if I should get it off myself.

I looked around the van for something to get it off that I could throw away and not have to touch it with.  I settled on a pop can.  So here I am, pulled off the side of the road, and cringingly unwrapping this thing (it was wound about 4 times) from my antenna.

That was about 9 years ago.  I drive by that area at least once a week and often wonder about the body, laying somewhere in that ditch, headless.  What would someone think if they found a headless duck?  I know what I though.  *shiver!*

Happy Spring!

Today was a 50 degree day and we are in Michigan and that's almost what we looked like. We picked up some handmade hot dogs from a local deli, headed to the park outside the zoo to grill and then headed into the zoo.  It is a positively gorgeous, Michigan spring day. It makes me so happy to go out in just jeans and a sweatshirt, catch up with some family time, hang out with wild and not-so-wild animals and just enjoy the outdoors. 

I made it through the zoo with just my walker, too.  It was a no-wheelchair-for-distances day and that makes me a happy camper, too.  I think some sunshine, fresh air, animals, family and fun is invigorating.  I might pay for it tomorrow, but I'd lay all the cash on the table for another today.

"I get tired, too."

Whatever you think tired is, it's not my tired.  I have very few moments when I feel awake. I'm almost always some degree of tired.

At best, my tired is the I'm fine and can go without sleeping but if I can sleep I might tired. At worst my fatigue is the kind where, yes this actually happened to me, you fall asleep on the living room floor 10 feet from the bed because getting there seemed the equivalent of climbing a mountain.

I'm pretty sure I scared the crap out of my husband that day when he came home to find me there.  Ah, scrapbook moments.

I try to describe my tired as feeling like you would feel the minute before you go to bed because you just can't stay awake anymore.  That's me more often than I'd like to recall.

I've taken the meds they give to people that are narcoleptic...and I slept.  I changed my diet...and I sleep.  I try caffeine and it works a bit...and then I sleep.  I've tried exercise and that makes me so tired I can't do anything else.  I've tried skipping my naps so that I could maybe go to bed earlier and sleep longer and then the next day I just crashed harder.

At least I look so good, or at least I'm told.  Thank you under-eye dark circle correction cream.

Spring messing things up worse than they were before.

The sun is shining here in Michigan.  It's Spring, they say.  It's only 30-some degrees but we'll take what we can get.  Any day without snow when you're nearing April is a good sign.

The term Spring Cleaning sounds so crisp, refreshing, revitalizing and cathartic.  It's a chance for a new start by purging the stuff you no longer need or use and organizing the stuff you want to keep.

I decided to jump on the living room shelf that stores DVDs, Blu-Rays and CDs.  It's been a wreck for months.  I'm anal-retentive when it comes to organizing things.  If I'm keeping them, they have to be alphabetized and able to be located.

I first took the movies that were all mixed up and sorted them into DVDs and Blu-Rays.  I placed the small assortment of Blu-Rays in alphabetical order on the shelf.  The 70+ DVDs are stacked in two piles on the counter below the shelf.  We have a Blu-Ray player and an HD TV so the DVDs don't get used but they could and....what to do, what to do.  Leave them there and let the hubby decide.

After that, I took the hundreds of CDs off the shelf and piled them on the floor.  I opened every case to make sure the right one was there or that there was a CD at all in the case.  Yes, someone that shall remain nameless tends to put CDs in whatever case is convenient even if that means it is basically unfindable unless you stumble across it by accident.

There were probably around 20 CDs in the wrong case, another 20 cases without CDs at all (though I know they exist somewhere), there are also burned copies of CDs, DVDs made at Vacation Bible Schools, Mother's Day gifts on DVD, computer software, backups... too much stuff; you get the drift.

Now I'm sitting here typing this as the piles of CDs and DVDs are just sitting over in the corner waiting to be told what to do.  It looks a lot worse than it did before and now I'm just confused as to how to handle it without just sticking them on the shelf and shutting the doors on it again.

Spring cleaning?  Not quite yet.