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.