The snow storm... that wasn't?

The End

(Putting it at the top for those who already read this yesterday)

We finally did get some snow and had a good ground cover by 1.

And winding up with what we figure was about 2 inches here.

When we got up this morning, it looked like about 4 inches had fallen during our 'super storm'.

Granted, IF we hadn't had the dry air masses and the snow had been able to fall like it had south of us in Kansas, we would have been buried!

(Winter Storm Q)

Q?  Really?!  NEVER remember storms being named when I was a kid - except hurricanes!  Back home in South Dakota, we just called this 'Winter' - from about October to May, simply winter with about a heavy snow once a month and referring to them by their year and month.  Or, simply, 'You know, that thunder-snow storm that buried everyone my freshman year of college in '98'

****************************************************************************

So Nebraska was shutting down last night for a predicted major snow storm (up to 16" in the south east corner I live in).

And many schools, including my daughter's, were shut down already last night.  I get e-mail alerts from her school and received this at 8:44 pm:

(my daughter's) School will be closed on Thursday due to predicted severe winter weather.

And we woke up to this new forecast of up to 16"...

...and this view out our front door at 8:00 am!

My son also gets daycare called off when schools are - so both kids have a snowday.

With not much for snow, when they woke up and started watching TV at 8 - notice the brown, not white, ground out the window. lol

At least the snow started coming in a blustery, small snow flake kind of way around 9 and had accumulated a little when I took this picture at 10 am.

Perhaps it's my growing up in South Dakota that makes me so cynical to Nebraska's approach to snow storms and their approach to weather vs SD's?

(off the Sioux Falls, SD school district site - where I grew up, and the biggest town in SD) 

  "The first and foremost consideration is the safety of students. In recent years, while snow events have not hampered the school calendar, tremendously cold wind chills have. When wind chills approach the point where exposed flesh can freeze in 10 minutes or less [-40 on a calm day, -30 on a windy day], the District will typically call off school.

  When it comes to weather-related delays, early dismissals or cancellations, numerous factors are in play. What time of day will the wind chill be in that dangerous range, and for how long? Will the 12 inches of snow be done falling by 3 a.m. and give city plows enough time to clear main thoroughfares and the streets around schools? What time in the afternoon is the winter storm predicted to hit our area?"

Lincoln, NE, biggest town near me, doesn't even have a policy that I could find!

Perhaps it's the weather man's complete seriousness they take in their guess work.  Totally on board with my riding group's term of Big Fat Lying Weatherman (BFLWM)

 (the site of my group's 'fearless leader' and her blog's first? reference to the BFLWM http://www.horsetrailriders.com/2008/07/big-fat-lying-weatherman-bflwm-strikes.html)

Will update on how much snow we get....

Refusing the chair part II

Not to exciting, but we picked up one of the cheaper ($70) wheeled with a seat walkers from a hardware store last week.  Who would've thought you could pick up walking aids at a hardware store?!

Sit or Stand Behind Rolling Walker

I already have a walker I tried using in the house, but this one is smaller and I can keep it to ONLY use in the house or going to town for appointments, etc.

(my exact walker - store photo)

I used it all day Monday, Thursday, Friday and the weekend last week.  Well, mostly on the weekend.  I started using my chair more this weekend again and am today (Monday).  After sticking with my chair for so much, man does it make a body tired. lol  Oh well, it's all good - only one way to get stronger, and that's to use the muscles!  Darn, I'm tired today, though.  Of course that could be somewhat my nearly 5 mile ride last night too.  And I got nearly a mile of trot work in there too!!  So, using my legs more in general is a good thing.  Just have to be sure to find that fine line between doing just enough and not too much.  For instance; part of why I've stuck with the chair for today is it's laundry day and I'm not about to figure out how to carry a basket on my walker right now.  Also need to get going again on the dresser painting project  and that's up stairs where I'll be caning it.

The (sometimes not so much) joys of country living

Started this a week ago Tuesday, gotta love that I'm busy though! (I think)

 

You always hear about 'the joys of country living'; for me - the open space, having a big garden (this spring? - fingers crossed), watching deer go across your land, coyotes singing at night, being able to ride out for as far as I'd like from my house and living with my horses outside my window.

The thing you don't hear about a lot is the roads, when it snows and rains.  Pure slop!

And then, you get a woman like me, who grew up as a city girl, and when she almost got stuck in their car on the road the night before, she calls the bus company to make sure they know about the roads (which they didn't) - just to warn them, and they choose not to drive the 3/4 of a mile to your place off the pavement.

And you send your daughter, who just got a 'mud day' off of school, out to take pictures for you... because you have MS, and navigating mud and slop is near impossible.

She didn't do too bad capturing the mud bog our road had become, but man, you should have seen the 'rooster tails' coming off my car and I couldn't really go over 30!!

One nice thing was that our usually frequented road (it's busy when people are going to and from work and we seem to be on the main thoroughfare between the two towns we're nearest - hence why our road is so tore up.

THAT all was from amost an inch of rain we had, plus snow melt, and frost coming out - welcome to the country!

What a difference...

... a couple hundred miles... having a chronic illness... one more child... makes.

First, I know, I know, I was going to quit titeling posts and doing them later, but a future post, 'Being sick is expensive' is being written in my head.  Put it here 'cause a lot of the slack on my blogging is due in part to that I hunt and peck to type and had a wpm of 28 6? years ago when I was in vocational rehab.  2nd is, and why there's such a lack of pics on here, is I'm still only get my pics off my old digital camera - at least it's digital and I can upload them lol

As far as 'what a difference a couple hundred miles makes', the above weather map from today shows that.  I grew up in the SE corner of South Dakota (the pointy corner in the blue wind chill advisory), and my journey as brought me to the SE corner of Nebraska (state with the top, NE corner in Nebraska - also labeled like northeast by an NE...?). 

Our, (southeast) NE, 7 day;

'Their', (southeast) SD, 7 day;

My husband's from SD too, but everytime we've discussed moving back, we just can't get past that it's colder and cold longer - maybe someday.

The difference another kid makes is really felt when there's a snow day!  We had almost 6 inches of snow yesterday, January 30th, and it was my 2 year old's regular daycare day of the 3 days a week I got granted so I could fit appointments, housework and rest into my week without having to worry about him - so, I got to deal with the fun of BOTH a 2 yr old and an 11 yr old. *sigh*  Wouldn't be too bad if I had the energy (and creativity) to keep them entertained with projects all day, 'part of the day' only goes so far you know.  Luckily, my sonis easily entertained by the TV (like right now) and even crashed yesterday before lunch!

Problem comes when the 11 year old gets fed up with G movies.  Of course, she started the day off on a bad note yesterday, which was ok because 'Dad' needed help shoveling (in front of our place and the neighbor's). :-)

On the other hand, my son keeps me active during the day and my first child has been a god's send (when she wants to be cooperative) with the ms diagnosis. - why is it usually termed like that?  Probably because once you get diagnosed with ms and are living with it, it's a journey in and of itself... kinda like, 'I have a ms diagosis' = 'I reside in the third dimention of this planet called ms'. hmpf, no.  In reality, it just means 'they' (the medical profession) have barely a clue what ms actually is, not a clue why it does what it does, and therefore throw whatever they can that might treat what they think they know at it.

In parting





  

New Year's resolutions

It's the first of the year and it seems that what happened in 2012 and what people want to happen in 2013 is on everyone's mind.

Yeah, I need to finish telling mine - 1. quit starting posts and leaving them as drafts for a week!  Sorry. Also sorry there's no pics (yet) for this post either... typing isn't quick for me, 28 wpm when I was in Voc. Rehab. trying to find a job after I was dismissed from my job in '07, and trying to make this look pretty, get new pics to use, and type, AND do this and have a 2 yr. old (which means if he's at daycare I'm doing damage contol, resting or RIDING.
So, not in this order for resolutions,
2. quick getting sucked into the Face Book vortex and actually DO something
3. Did 200 miles this year in the Distance Derby race, finishing 42 out of the 46 riders that finished the year of the 72 riders who started this year long virtual, gps horse race of miles, so... I hadn't set a goal at the beginning of last year and got 200, so I'm aiming for 300 this year.
4. Reteach my fingers to play piano (remember the typing thing?).
5. Get a better seat under me riding by being able to do 7 strides posting, 7 standing and 7 sitting by the end of the summer.
6. Get my husband to get riding our 2 green horses more or send them down the rode!  Goodness, they're 6 and 8 and I feel unbalanced and insecure riding them too the point that, especially after my experience with the neighbor's 4wheeler the other day on the 6 yr old, I've decided it's unsafe for me to be on them.

Happy New Year, may it be a good year for everyone!

How to describe conditions where fatigue is a major symptom

Merry Christmas, or whatever holiday you celebrate... or don't, I hope all is well for everyone.  Being kinda lazy, lol, but this is an anology of dealing with fatigue.

This is a story told by a woman with Lupus, but it's a great one.  Lupus is isn't the same as MS, but it's got similarities, mainly (in my opinion) that they are both autoimmune diseases and present issues with fatigue - which is what this story illustrates.  I relate best to, "Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to."

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Befitsof Horseback Riding - Part 2

It's probably better that I split this into two posts because of the length of the 5 page paper I summerized.  I found it most interesting that Dr. Meyers spoke specificly about the benefits of riding for people who are disabled.

I also found, in my web browsing, Jacobs' Ladder Therapeutic Riding Center's list of therapeutic benefits of horseback riding.  From their website:

Physical Benefits:

Stretching of tight or spastic muscles Decreased spasticity Increased range of motion of the joints Reduction of abnormal movement patterns Improved respiration and circulation Improved appetite and digestion Sensory integration.

Psychological Benefits:

Improved self-confidence Increased interest in the outside world Increased interest in one's own life Development of patience Emotional control and self-discipline Sense of normality Expansion of the focus of control

Social Benefits:

Friendship Increased experiences Enjoyment

Educational Benefits:

Remedial Reading Remedial Math Sequencing, patterning and motor planning Improved eye-hand coordination Visual spatial perception Differentiation

And, for those not so interested in the mental and physical benefits, but more so in how much a workout you're getting; I found this:  Counting Calories at the Barn

All that aside, I have been truely 'feeling the burn' when I go out and get a horse ready, or even partially ready, on my own.  I have been fortunate enough to have good horse friends to help keep me riding that have been nice enough to get my horse saddled and unsaddled for me... and sometimes helped me on or off my horse.