Hoops

There are days when I feel like I'm jumping through hoops--hoops I set up for me; hoops others expect of me; and hoops my disease puts up in front of me.  I'm learning slowly but surely not all of these hoops need to be jumped through.  Some can be climbed through, some can be walked around, and some can be just ignored.

Take for instance, the Hoop of Healing.  Who is giving the healing?  Is it necessary?  Does it really work?  Does it add to my energy or take away?  Each hoop needs some important questions asked before jumping, leaping, walking, or ignoring is done.

Just this week, I was at conference for work-Hoop of Horticulture (one I love jumping through).  A gentleman attendee honed in on me, seeing my cane and limp.  He obviously found a kindred spirit, since his gait was impaired by a stroke. He followed me everywhere on break, during lunch, and even whispering to me during the speaking engagements all about Hoops of Holistic Healing. You really need to try these. The best one is the Hoop of Hemp.  I tried to be nice and find common ground, since I do use essential oils, but it just seemed to encourage him.  I found this draining to me.  And as I was leaving the conference, with his information stuffed into my hands, I realized this was a hoop I was going to have to ignore.  No matter how well intended this information may be, it just wasn't for me.  It was draining to me, a lot of info scribbled on his tiny piece of paper, and there was no reliable information out there (yet) on it for me.

Next is the Hoop of Home life--aka your family.  Lately for me, it's been a fast-rolling hoop, racing downhill, and I'm trying to hop along through it with one leg. Can I say, it isn't working? My kids are grown and gone; they've created their own problems; and while they may come to me for help, I can only be there to love them and help them pick up the pieces.  On some of the issues, it's deserved-good or bad.  On others, my heart aches for them.  But this all goes back to me (and I'm not being selfish here): Does it add to my energy or take away?  Is it helping with my peace of mind?  So, I need to decide, as I did when they were young, is this a battle I want to fight?  Or is this a hoop I want to ignore, crawl through, or help them jump through?  As much as my motherly instinct tells me to run and scoop them up, wipe their tears, and tell them it will be okay, I know this is a battle I should not pick.  I should let that particular hoop just roll on down the hill and not drag me with it.

The last one is the Hoop of Hope.  I always believe in hope.  Hope is what makes me get up in the morning, knowing that even though I'd a night of insomnia, a day of sunshine is waiting.  I have friends waiting for me at physical therapy.  I've a husband who loves me.  I've two beautiful children, on good days or bad,  who have two great spouses.  I believe in the afterlife where I know I will walk without tripping over my toes and I'll be able to pay my violin again. Hope is what keeps me smiling and laughing.

And it's hope that has me helping where I can with other MS patients. I talk with them and encourage them.  It got me involved in the community.  It helps me inspire others to jump, crawl, or ignore those hoops and not to feel guilty!  And through this physical therapy facility, I've come to make a difference with one important Hoop.  Right now, I'm putting a call out to all of you who have struggled with hoops of any kind for your help out. I don't usually ask for much but this is a cause I believe in:

Spoons

Work usually ends the last week of September and for me it's a bitter-sweet time. I look forward to catching up on the canning, housework, and free-time I've missed the six months working.  But, I also miss the laughter, jokes, lunch dates, gossip, and friends from the office.  It's a long six months wait to head back.  But this was an Indian Summer so, work kept on through to the end of the October.

I  just barely finished up with my classes in the Master Preserver Course in mid-September when I started up with the Horticulture Diagnostic Classes.  I had my work days switched from Wednesday to Friday so I could attend. To add to my bulging schedule were my duties as the  President of the Utah County Master Gardener's Association. The Fall Social was around the corner, and I had to make sure everything was running smoothly.  Even though it was in November, there were several meetings I was in charge of, emails to send, phone calls to make, and volunteer hours to count.   

One Wednesday, I arrived late to Diagnostic Class looking like death warmed over. Lecture had been going for 15 minutes.  To give you a quick picture here, class is held in the basement of a building by massively beautiful gardens located in Northern Utah County.  It is a good, brisk, ten-minute walk for me on a good day.

This was not a good day, and the parking lot seemed to be out in the back 40. For those who aren't familiar with the farming term, that means the back 40 acres of the property or in other words, a long, long way.  I silently cursed myself for even coming to class and contemplated just crawling back into the van and driving home. But, the drive home would've taken twenty minutes, several gallons of gas, and I really wanted to go to this specific class.  Scooter it was. 

I sat through class thankful I'd stayed, but all the while dreading the poweride back out to the car.  [At least it was a ride and not a walk, or crawl].  My co-worker and friend, Meredith, must have been watching me because when class was finished, she leaned over to me, "So, you finished all your spoons for the day."

Blank stare.

"Your spoons.  You know-the spoon story."

"I've no idea what you are talking about."  Meredith was always the sane, older one.  Maybe she was talking about something for the fall social I had forgotten about.   

"You know my daughter has Lupus, right?"  I nodded and she continued, "While I was visiting her this past week, she share the spoon story with me.  You and her are a lot alike."

She then proceeded to share the spoon story with me.  I wish I had been smart enough to come up with this analogy.  But I wasn't.  I do thank Christine Miserandino for her insight though.  I have shared this with everyone I can-whether or not they can benefit from it.  It hit the nail on the head.

There are a few items I'd like to point out to non-MS people out there (well, anyone with a full day with 12 spoons).  Please read the story first.  It is really hard to explain that just taking a shower (not getting dressed or fixing  hair or all the good stuff that comes with it) can use up 3 spoons if I'm not careful.  Or how on other days, I feel so fantastic I'm buzzing around 50 mph and use up all 12 spoons + 4 of tomorrows and regret it the next day.  Christine did a great job trying to write a visual for others to see it.

One time, while I was sitting in my psychologist's office and crying to him about the loss of feeling in my fingertips, he nodded his head.  He was scribbling something on his pad, and I got angry.  I took his nodding for him knowing how I felt.  I stopped my boo-hooing and started yelling at him.

"You do not know how it feels to not feel anything-not to be able to tell if your kids are running a fever; or stroke their cheeks and feel baby soft skin!  You can't tell when you're burning your fingers on the stove until you smell burning flesh!  I couldn't even change the heater knobs in the car on the way over here.  And it wasn't because they were cold.  It was because I. CAN'T. FEEL. THEM!"

He looked at me, and, in the stupid, soft voice of a shrink, he asked, "Then, explain it to me."

I thought of someway to tell him what it felt like. I looked at my thumb, where a large bandage covered a wound from slicing tomatoes.  "It's like having a bandage on every single one of your fingers.  Try living life every single day dealing with that.  Try typing, writing, cooking, driving, whatever! Bandages on all ten fingers."

I finished the session and didn't think anything more of it, until the following week, when my doctor informed me he had tried it.  Tried what?  The bandages on his fingers.  Not intentionally, but he had cut three of his fingers chopping wood so instead of taping up just the three, he did all ten.

"And?"

"I don't know how you do it.  Everything took twice as long, and somethings, I just gave up.  I have to say, I admire you for not giving up."

To be honest with you, I have given up in frustration. But I've also have picked 'it' up again, knowing if I don't keep trying to do 'it,' I will fail. There are times I don't give up, even when sometimes I probably should--like maybe when I am out of spoons for the day.  But if I had given up way back when I couldn't do anything with my fingers (1998), I wouldn't be writing, typing, sewing, tying my shoes, and the list goes on.  I will say it was extremely frustrating.  I taught myself to do all of that on my own again.  I was in between neurologists and had nobody but my family to encourage me.  It was the thought of my family, my little children,  and all the things people told me I couldn't or shouldn't do, that spurred me on.

There are things I've accepted I can't do anymore, so I don't throw away my spoons away needlessly. But, there will always be other times when I can't help myself by saying, "Maybe just one more spoon."

.

Rantings

Recently, I was away from my main PC and was trying to get into my blog site.  I just Googled "Ramblings of a Domestic" and was expecting my page to pop right up.  Now about a year ago, this would have been the case.  But not today.  I was in for a surprise.  I got things all domestic in it but with variations of what type of ramblings or goddess.

Heartfelt
Midlife
Bad
Sorta
Southern

Really?!  Stealing my name and idea?  Can't think of your own blog title?  And what do you mean by Bad? Or Sorta?  Is Bad like in naughty or as in terrible?  And is Sorta, like you are into it only half-way?

I know Domestic Goddess has probably been around for a long time, and I don't have the patent on it. But Rick gave me that nickname a long, long, time ago.  I even have a pair of PJ's with the name on he gave me one year for Christmas.  He likes to joke with me: I'm his stay-at-home Goddess, hence my superhero name-'Domestic Goddess'.

I came up with the 'Ramblings' since I don't have specific topic on any given day; I don't have set times or days I post; and I wanted to have the freedom to post  whatever I darn well please.  AND I chose 'DISABLED' because I feel handicapped is so lame.  I'm still perfectly able to do a lot of things. The dictionary defines disability as the lack of adequate power or strength to do something. That doesn't mean I can't still do it. When you call people with MS (multiple sclerosis) or other diseases handicapped, you are putting a cap on the things we can do.  So derogatory.  The dictionary says the word handicapped sometimes offensive and gives the synonyms for it as hinder, impede, cripple, incapacitate.

So... all those out there who have piggy-backed on my great name, I'm here to let you know you're in no way 'handicapping' this Disabled Goddess in anyway, shape or form from Rambling.  'Rambling' the way it was intended--to share information;  help others know someone else has been there, done that; and hopefully help them feel good about themselves!

In the Eyes of the Young

MS and summers don't mix.  The heat drains energy and exacerbates the symptoms.  For me, my right leg seems to fluctuate between a cement post or a Jell-o Jiggler.  This causes tremendous problems with walking and balance.

My family decided to go to the monster truck show one evening of the county fair.  We parked in the back and beyond (yes, even the handicap places where out there).  We decided to take a 'short' cut. To my dismay, there was a little canal with a bridge.  Just before the bridge was a  5" step up.  Before I could start panicking over that, Rick told me to get off the scooter and the men would just lift the it over it.  I'd walk up the step and continue to ride the scooter over the bridge and down the other side (there was no step on the other side).  Problem solved.

We wandered around the fair; looked at the ribbons I'd won for the exhibits I'd entered; ate some greasy fair food; and then, went over to the monster truck show.  By this time, I was hot and tired, even with riding on my scooter.  This is never good for MS. Being tired wears you down faster; it also makes me cranky.

Rick and I sat in the handicap section, only to be told 30 minutes before the show started that we had to move, since we were in the 'splatter zone'.  We could stay there if we wanted to be hit with flying mud.  We weren't the only disabled people who had to move.  All the seats were taken by then, but folding chairs were brought in, and we were given good viewing seats.  Good thing, too!  I was really cranky by then.  :)

By the time the show was over, I was in a good mood. We slowly made our way back to the car via the short cut.  When we got to the bridge, I hopped of the scooter, and instantly, my leg turned into a cement post.

This is where a good sense of humor comes in when having any type of disease.  You must be fast on your feet and and have a quick wit.  The feet part wasn't going to happen this night, but the wit part didn't fail me.

As I was trying to step down, I started off with the wrong foot--the cement post, stiff-as-a-board leg. I felt myself start to fall.  Think of this in slow motion:

My hands went out in front of me.  In my mind, I was remembering several years ago when I had fractured my left wrist 3 times, fractured my left elbow, and sprained my right wrist. I went to pull my hands back when out of the corner of my eye, I see a tall figure walking toward me.  I reach out toward it and grab hold.

(Back to normal speed)

This tall figure was a dad carrying his four-year old daughter on his shoulders.  He catches my arms as I go stumbling forward, threatening to drag his shirt down the front of his body.  Together, we teeter around, while his daughter has a death-grip on to his hair.  As we gain our balance, I apologize profusely, and he tells me it's no problem.  We laugh, and he checks to see that I'm okay.  Rick runs over to us only to find all is well.  Meanwhile, the little girl is staring at me, my scooter, and pipes up, "Are you old?"

Her dad dies a thousand deaths, and I laugh at her. "Older than you, sweetie.  Older than your dad."

"I'm sorry for my daughter.  She has a problem with saying the first thing that comes out of her mouth. No shut off valve."

"You don't look old, but you have..."

"Hahaha, honey that's enough.  Let the nice lady move on."

"It's okay.  She just wants to know why I have a cane and a scooter, "  Turning to the curious little girl, I tell her I need those to help me walk so I'm not falling like I just did on to her daddy.

She looks all knowing and nods her head.  The dad apologizes for her rudeness and rushes off.  As he does, I can hear her telling him, "I still think she's old."

I laughed all the way to the car.  It made light an embarrassing situation.  It also took my mind off my sore and twisted ankle.  But it also got me thinking about how many times parents try to shush up the kids when all they are trying to do is find out information.

I've had children ask me before why I have a cane or walk with a limp.  I used to be offended.  But then, I realized they really do want to know.  They aren't being rude.  To them, it's a new world and they want to know how it works. Sometimes, we both have fun with it.

I've told my Cub Scouts my cane has a secret sword hidden in it, and if they don't behave, I will slash them to ribbons.  Of course, I wink, and then, they know I'm joking, But it takes the awkwardness out of the situation.  I've let my young women in our youth group use my walker or wheelchair for fun and to experience what it would be like to have disabilities. In public, I've noticed stares from children and answered their unasked questions-much to their parents' chagrin.  But it's okay.  It's how everyone learns to deal with disabilities.  It's how I learn to let people into my life and how they learn that I'm a normal person.

If you are reading this, you need to think of where you stand.  Are you a person who is afraid to let someone talk to a disabled person?  Afraid of offending them or embarrassing them?  Sometimes the person will be.  Maybe they haven't gotten over the pain, anger, frustration, or whatever grudge they are carrying in their life.  If you happen to run into one of those, just apologize for disturbing them, wish them a wonderful day, and move on.  But I can safely say, most people are not like that.  We would love to share and talk with you.

Or, are you the person who hates to have people ask about your day or about what's ailing you?  Does it make you afraid to have another human being want to know what makes you tick? Is there anything wrong with someone else talking to you and try to socialize with you?   If so, I'm sorry for you! Being a hermit is no way to live. Yes, we all need a little 'me' time, but too much of it, isn't very good. Most people don't bite. Reach out and find someone to share your burdens with and you'll find life is so much easier to bear.  Even if you're told you're 'old' by a little four-year old!

Bathrooms

Recently, I took a vacation trip that left me questioning my sanity of ever leaving the four walls of my house.  It's already hard for me to run to the store, movie theater, or doctor's office without having to make a pit stop if these outings become to long.

Take a normal movie of about 2 hrs and 11 mins. I use the facilities during the previews, hobbling back to my seat just before the start of the show.  I always seem to get the show house situated at the opposite end of where the restrooms are located.  I don't dare have a drink of any kind as that will exacerbate the 2nd trip. This will come right during the crucial moment of the movie-the murder scene or answer to the mystery. When the twinge hits, I have to hoof it.  AND if I'm lucky enough for the place to have a handicap stall nearer to me, someone that's NOT handicap is using it.  I've seen that happen a number of times as I'm limping from the back-and-beyond (barely making it, mind you) and seeing someone rushing out of there.  Errrrrrr.......So, back to the movie, missing about 15 minutes, not knowing where we are, trying to ask Rick and getting shushed by everyone.  You get the point.  If I am lucky, there is no 3rd trip until the movie is over, and then, it is look out everyone!  Peg-leg lady coming through.

On this trip through Nevada and California, I came armed with an app that was to help find bathrooms.  The app was almost worthless.  Maybe in other states it would have worked, but who knows.    I must say though, Nevada has gotten better over the years  I didn't have to worry about finding a non-existent piece of tumbleweed or hide behind a Joshua Tree to do my business.  But California!  What a joke!

I guess I am used to friendlier states with rest stops, convenience stores with actual bathrooms, grocery stores that actually let you use there bathrooms, restaurants that care if the bathrooms are not nuclear waste dumps, and people who care if you have a disease that doesn't always allows you to control your bladder. There was only one 7-11 I went into with a nice clerk who allowed me to use the nuclear grounds.  If I hadn't been about to explode, I might have thought twice about it. But believe me, after about falling over some barrels of unidentified toxins, using the grimy sink, thanking her profusely, I sanitized myself from head to toe.

This trip has made me realize I can't handle all the driving.  I really do hate road trips.  Hate it, hate it, hate it. Maybe a  plane or train where the bathrooms are accessible, but all this stopping every hour or worrying about finding a bathroom really is too much stress for me. I want a relaxing trip; I don't want a dark cloud hanging over me all day until I get to the hotel.  Plus, I want to eat and drink what I want.  I have to avoid caffeinated drinks, spicy foods, chocolate, and other things that irritate the bladder.  After this trip,  I was dehydrated from not drinking and felt like I'd never catch up.  Not good for the body.

Society has come a long way with more accessible buildings, better access to transportation, and an awareness like never before.  But, I know there are things that need to be done to help others with health issues like mine.  I, also, have to step it up.  I can do things to help out.  One, make others aware where the bathrooms are!  Two, not traveling where there aren't bathrooms (or bring one with me ☺).  Three, this one I like best, travel by plane or train and take shorter trips with a rental car.

For those out there with issues like mine, I had a hard time coming to grips with this.  The jokes of mom always knowing where every bathroom was from Canada to Mexico or why the family wasn't surprised when the first place I ran to at a restaurant or store was the restroom were getting old.  I'm coming to terms with this and learning to laugh back.  Life is too short to worry and stress.  Take it in stride and laugh back at them!!

The Merry-Go-Round

This year is flying by and I'm barely hanging on.  Ideas for this blog have flitted in and out of the recesses of my mind as I have struggled with issues due to MS, recovery from my surgery, and just life.  I enjoy sitting down and talking to my blogger world, but as the sun sets each day, I find myself flopping into bed not even kissing my hubby goodnight.

I remember as a young girl a commercial about lemonade.  It was filmed in a hazy, warm light with kids swinging in a tire swing under a big leafy tree and a huge grassy field behind them.  The camera would pan along a dirt road and into town to two old men playing a game on the porch of some shop with them laughing and sipping the lemonade.  And of course, the voice-over would ask if you remembered the lazy days of summer and how you could have it now by enjoying some lemonade.

I don't know about you, but my lazy days of summer, or any other time of the year, ended about the time I turned ten.  And with each year, they are getting faster and faster.  In fact, I've compared it to being on the Merry-Go-Round at the fair.  Life started out slow and fun. But now, my beautiful white horse with the flowing pink mane and golden bridle is spinning around so fast, I'm going to be flung off into a black hole somewhere.  I just want to stop the ride and get off.

But getting off is not an option.  Trying to slow down the ride is.

A few weeks ago, Rick and I were able to do just that.  Maybe not slow it down but giving ourselves the illusion our carousel was not going at warp speed. He had a business conference that fell right before our anniversary weekend. The conference was at a really nice lodge in Deer Valley, UT and it was all-expenses paid.  So I went with him.  The rooms were offered at reduced rates for the weekend so we took them up on the offer.  He got to attend his conference; I got some R&R; we got to spend several days together for very little money; and our anniversary wasn't some rushed date out to Texas Roadhouse Grill.

I've been eagerly awaiting the planting season.  As I was laid up with my bum hip in January, I was plotting and planning my garden.  I started my little seedlings a little later than usual, but with Mother Nature being the fickle woman she is, being late was okay.  My seedlings were going to make it.  Until...they got left out in the blazing heat and were fried!  Literally, there was nothing left of them not even a shriveled stem.  After that, I wanted to give up.  I was really too busy with doctors', work, and just keeping up with the house to even think about trying to jump off my white horse to go buy plants for my garden.  I just wouldn't do it.  It'd save me all the long months' of weeding, watering, and eventually canning and freezing.  Besides, I still had all my fruit to deal with.  And believe me, it's plenty.

To add to the frustration of trying to keep up with my spinning whirlgig, my AFO or leg brace broke--snapped by the ankle.  Who knew carbon steel could do that?  So I was back to using my worn out one. I had to really concentrate to pick up my toes and not trip over them.  I got tired faster.  One day at work, I did a beautiful face plant on the carpet.  That wore me out even more.

Even with all this, you and I know this fair ride called Life is permanent.  Face plants or dead plants don't allow us to call it quits and yell at the carnie worker, "Hey! Stop the thing. I don't like this anymore."  We have to keep plugging away.

What keeps us from losing our lunch are the moments of  lazy days and lemonade. Where the trials, tests, frustrations, jobs, headaches, life on their little merry-go-round are in slow-motion for a brief moment in time and let us gain some sanity. We breathe, start to laugh, enjoy our chosen steed, and say, "I like this ride after all, Mr. Carnie.  Let's go for another spin. And make it faster this time, please!"

A Horrible, Very, Bad Day

I'm sure we remember the book we read as a child about Alexander and his bad day.  To a little kid, it's funny how everything goes wrong.  We could relate.

Today, I was thinking about the title.  I was thinking I can relate.

My life with the no-good days started in high school gym class.  I remember it vividly. I had a gym teacher, who happened to be the track coach. I'm sure he felt it was his responsibility in life to make everyone an Olympic runner, whether they wanted to be or not.

It was cold and rainy outside, and it was another terrible day of running laps around our immense gym.  We had a 50-minute period to run- around the gymnasium mezzanine; down the stairs and across a large stage; then, down another set of stairs to the gym floor; circle around the floor and back up the stairs; head back across the stage, up the opposite stairs, and to the mezzanine;  only to repeat the process all over again. And if you were caught cutting, drop to your knees and do so many push-ups.

Now, I could do about a 7 1/2 minute-8 minute mile depending on the day.  But, I was not on the track team nor did I like gym class.  I couldn't climb a rope to save my life (and he knew this), and I was lucky to do two push-ups.  I played tennis on my own; went hiking in the back country with my family; but basically, all around sucked in this class.  He did not like me.  I think he thought I was always trying to come up with ways to get out of his class, which I didn't.  I worked hard and tried to not complain.

On this particular day, I was on the mezzanine, running.  It was about 30-minutes into class when my right leg just gave out, and I hit the cement floor.  My fellow classmates made derogatory remarks to me about being in the way and tripping them up.  One of the most popular girls in the school was in my class and just happened to be running by. She 'accidentally' stepped on me. We know how that works.   Anyway, the coach runs up,  "Get up!"

I tried. My leg was jello.  It buckled under me again.  "I'm trying."  I showed him I was attempting it and came crashing down again, bruising my knee on the hard cement.

"Quit faking it and get up!"

"I can't.  My leg won't work."  I was pretty close to tears and trying not to look like a wuss.  Classmates were running by, and I could feel the sneers burning a hole into my head.

Coach yelled at the TA.  "Drag her over to the side, so she isn't in the way of those of us who want to run." He took off running with the rest of the class.  The TA came over and tried to yank me up on my feet. My leg wouldn't support my weight and buckled under me again.  He grabbed my arm, dragging me over by some folded bleachers.  I wanted to crawl under the bleachers and die.

That was my first experience with an MS symptom.  My mother took me into our doctor, and he didn't have a clue about what was going on.  He banged on my knee and couldn't duplicate the symptom.  When he heard about me playing tennis, he jumped on it and said "Oh, that's it.  You have tendinitis.  Take these pills, and you'll be all better."

So, that was that.  Just a horrible, bad day.  Humiliation and some pills.

Thankfully, for me, nothing else happened for ten more years.  I was able to enjoy college, dating, newlywed life, and my children for a few brief months before I started having a few more of those terrible days.  And with those ten years, a bit of maturity.

I'm not saying maturity helps things.  Like today for instance, I can label it just as Alexander did-the Terrible, Horrible, No Good, Very Bad Day.  But I can also look back at a lot of good days and hope they're right around the corner.