Just Say No

"No."  That little word in the English language is really hard to say.  It is only two letters, yet it is hard to spit out.  So many things are thrown at us--choices, decisions, obligations--but we don't want anyone to feel we are unable to preform, so we say "Yes!."  Then, comes the dread, irritation, panic, anger, or sometimes fear at what we have done, all because we can't do what we said in the amount of time we have to do it in.  Do we blame others for it?  Blame ourselves?

I used to ask my kids all the time--"What part of NO don't you understand?  The  'N' or the  'O' ?"

I think we need to ask ourselves this very same question.  If we did this, maybe we wouldn't get ourselves into situations that sap our strength--both mental and physical. 

It has taken me years to learn to TRY and not volunteer for everything.  I love to help and people know this.  They will always come and ask for help on things.  I'm famous for biting off more than I can chew and my dear husband or son is always having to bail me out.

In my younger days, after being first diagnosed with MS, I had quite a bit of energy.  I would be the first mother to volunteer for my kids' school functions, class field trips, be the room mother, and rush to the school if the teacher needed help.  I remember one field trip to the zoo in the hot sun where it was all I could do to drag myself to the bus when the day was over.  I slept with all the kids on the way back home.  It was hard not to sign the forms that went around. By the time my kids were in high school, my support was attending their functions.

Just this past month, I had a chance to use that little word and I'm so glad I did. I'm the Vice President  for the Master Gardener Association in our county.  I'm also on the board of our church young women's group.  Plus at this time, I am getting ready for my daughter's wedding.  Ok, now think holidays.

I am working with the MG Board on their Winter Social.  I let them know I'm busy with my daughter's wedding and can't do much so put me on a little job.  No problem. That's done.  The church YW board needs one person to help with the big church party.  Everyone looks at me.  I tell them flat out NO!  I have a wedding at the end of Dec, a community Christmas party (MG thing), and holidays with company.  NO way.  [Whew, I said it].  So they find someone else.

I have felt guilty about saying no for weeks.  I have been thinking maybe I could have squeezed it in.  Maybe I could have taken a nap or two during the day and not have been as tired.  I am sure you know all abut the blame game.

Well, here is where I'm glad I said no to the church.  Ten days ago, we had a death of one of the head honchos involved with the MG Board.  The Pres. of the MG Board had scheduled her vacation during the date of the Winter Social and wouldn't be there. Another head person running the Social found out her niece moved up her wedding two weeks, so she will be gone.  AND, to add fuel to this blazing inferno, another head person's husband's surgery just got moved up.  You guessed it--to the day of the Social. So, I'm suddenly NOT doing a little job but helping to run this whole thing.

What if I hadn't said no?  I am sure I would have survived.  We all do when we get ourselves into situations of our own making.  Things probably would have slipped. I'm sure my health would have suffered.  I, also, know I would have turned into what my family calls 'the Wicked Witch of the West.'  My husband AND son would have been called on to help with items requiring them to put aside their own lives and schedules. All around, me saying 'no' was a life-saver. family-saver, and a sanity-saver,

You might say I do understand the 'N" and the 'O'--it is a much needed life-preserver.

Change

I woke up the other morning to the world blanketed in white.  I knew it was coming but was disappointed none-the-less.  I love Fall with the colorful leaves, the crisp mornings, and the warm, sunny days.  This year, we actually had a nice, long Fall.  Days were unusually warm, so I enjoyed every minute of it.  But, of course, as I was enjoying my favorite season and relishing in the fantastic weather, I knew Old Man Winter was right around the corner bringing the change of cold weather, icy roads, and the white stuff that layers the ground I walk on.

Change is hard for all of us at times.   My last post had a possible change looming before me.  I had quite the ride studying information but wanted to be informed when I went for the visit with my neurologist.  I wanted to be ready for the change.  I was actually relieved to find I didn't have to change and my life could go on as before.

But this last scare got me thinking about other changes in life.  During the past couple months, I've had changes to my eye site, changes to my family (my daughter is getting married), changes to my income, and changes to our vehicles.  While these are minor, it still got me thinking.

What do changes do to us?  Do we get upset and stressed out?  Or do we go along with the flow?  I'm guilty of getting stressed out.  I like things to go according to plan.  I absolutely hate a wrench being thrown in to my neatly organized life.

A few years ago, I was involved with the girls in my church group.  We would plan activities, and I'd keep a calendar with all the ideas the girls came up with.  Now, we all know teens don't keep things according to schedule.  They show up late, over plan, and have their own agenda.  I know that and should have gone with the flow.  But I was highly stressed out when things didn't go as we'd planned.  I had an assistant who was the best thing for me and turned out to become a very good friend.  She taught me to just go with things, accept changes to the schedule, and don't let things like this stress me out.  She  had a calming influence on me throughout this whole experience.

Change happens to all of us.  It's inevitable.  It's how we handle it that makes us who we are.  Years ago, at my first full-time job, I went into my boss' office and I announced, "We have a huge problem." He looked at me and clarified, "No, we have a situation."  I was young, fresh out of college and an English major, and flippantly replied, "There really isn't a difference in those two if you were to look them up in the thesaurus."  "True, but when people hear 'problem,' they think bad things and don't want to change it.  When they hear 'situation,' they think of a dilemma or quandary and immediately start thinking of solutions to change it.  So we never say 'problem'."   He proceeded to ask me about my 'situation' and then, he gave me another wise bit of advice "Will it matter in 100 years?"

After I left his office, I thought about those two bits of advice--"Situations instead of problems" and "Will it matter in 100 years?"  I must say I've used those when changes have come -- moving to a new state and leaving everything behind; going on a new MS medication; who to vote for in a presidential election; what house to buy; whether to forgive a person who has offended me; whether to eat that extra piece of key lime pie :) ; and the list goes on.

Change is hard no matter what our circumstance or what the situation is.  Life is full of it.  I think it is how we handle that change which defines our character.  I have made strides on not stressing out over every little change that comes into my organized life.  I have found I kind of like life a little randomized.  I thank my old boss for his advice and my friend for 'go-with-the-flow' attitude and teaching me change is what happens.  I need to learn to love each season as it comes.  And maybe so do you.

Peace

It has been a while since I have sat here spilling my inner-self.  The roller coaster called Life is flying by with me hanging on gasping at each peak and laughing at each plummeting gorge.  But the laughing has stopped suddenly this past week and changed to reflection and observation.

For those who don't believe in Deity or a higher power, this post may be hard for you to grasp.  But I want you to understand that I believe in Him.  I find it hard that you don't. Just like you probably find it hard to believe I do. It is the way we both think, I guess, and I hope you don't take offense. 

Just walk outside and look around. The planet is full of God's creations.  The full moon that rose last night, shining on the Earth, is highlighting every living thing.  The smallest insect with its tiny lace-like wings; the maple leaf with its five distinct fingers, the five large veins running up them and branching off into smaller veins (in the fall, maple leaves usually have the brightest, most beautiful, colors for running, jumping in, and, of course, crunching); the mountains, with their snow-capped peaks; the deserts, with the Joshua tree forests; the oceans that go on and on; these are all of God's master pieces--as well as you and me.

I've often wondered how people deal with heartache, grief, pain, fear, the unknown, and even the future without the peace and understanding Deity brings--no matter what the belief is.

Those of us with chronic illnesses know there is really no set cure for what ails us. Good nutrition, exercise, a healthy lifestyle, and a good relationship with your doctors are the best thing we can do to help fight our battle.  If we have a few years of a great medicine, take it for what it is--a blessing.  But know that things can and probably will change.

That was the hardest thing for me to deal with when I was first diagnosed. I always thought there was a pill for every ailment.  Was I ever wrong!  During these past 16 1/2 years I have been on 4 different specific MS medications.  Now it looks like I'm moving to a fifth.  I'm thankful there is a fifth.  When I was diagnosed, there was only three.

Now, I'm studying my options.  But studying isn't going to tell me everything.  I don't like to go eeni meeni miini moh and choose one.  I study; I listen to my doctor; I study some more; and then I pray.  I need to feel at peace with my decision.  That is how I decided to go on to Tysabri.  The drug had a black box warning--meaning people had died using it.  Was I scared to go on it?  When my doctor first approached me I told him no way!  But then I did the steps above and felt a calm come over me.  All fears where removed.  I KNEW I would be okay.  Just like now, I still KNOW I will be okay--whether I have to go off Tysabri or not.  I will be okay.

I can't tell you how the peace feels until you have experienced it for yourself, but I KNOW what it feels like. I wouldn't want to be without it.  I wouldn't want to look at all my medical options and say--Hmmmm, I think I will choose THAT one.  I'm glad for this ride called Life.  I'm glad in my car there is my husband of 22 years, and he supports me.  But I'm also glad I have my Lord with me, too.  He makes the ride more calming, so I'm not screaming as I'm riding with this illness called MS.

Things That Matter

For several days, I've been thinking of my little family's circumstances, and what a trip it's been.  I've learned a little about myself (good and bad) and realized I'm overall a happy person who's been very blessed.  Life is good, but it's also what I make of it.

My husband was let go from his 'great' job almost two years ago and with it went many things we were used to--health insurance (which for me has been the hardest blow); a steady paycheck (you can imagine everything that pays for); and the little things we took for granted: vacations, movies, dining, etc.  And like many others in this terrible economy, he has yet to find a "normal" job.

I'm not writing this to create or have a pity party but to let you know it's made us aware what really matters in times like these.  To maybe make you, also, step back a little and think about your life, no matter your circumstances and see what is most meaningful.

I remembered telling a friend of mine here I was in my forties and starting life over.  It's kind of like when I finished college.  I had nothing then, too.  She reminded me I still had my home, and when I left college, all I had was a beat up old car.  I did see the humor in that.

My reminiscing sent me way back to to my wedding day.  It was a disaster in all ways.  A brief run down--luggage lost; rings missing, found ruined; ceremony time had to moved 3 hours since marriage license also went missing; cake top shattered; sisters arrested by over-zealous traffic cop and had to be bailed out with honeymoon cash; one of wedding speakers talked for 45 minutes causing one of the groomsmen to faint from exhaustion (it did help shut the man up, lol); and those were just a few of the highlights. But only one thing mattered.  I was married to the man I loved.

So, I've been thinking of what IS it that matters?  Certainly not the stuff we sold these past two years to make ends meet; not the items we lost at the wedding. Stuff is never important. It can always be replaced.  Of course, it seems so at the time--the modern car with all the bells and whistles; a cool, new DVD coming out next week; the beautiful outfit in the mall window; or a must-have shoes everyone at school has.  But there are other places to get those things cheaper, and, most of the time, we really don't need them.  Think about it, renting a movie IS cheaper than buying it, and then the movie doesn't sit on your shelf for years gathering dust.

Things that matter to me:
1-A husband who does the laundry, so I don't have to climb the stairs (with MS and this brace on my leg, stairs are a killer).
2-A son who planted my garden, so I could have fresh tomatoes this year (and win blue ribbons with those tomatoes at the County Fair).
3-A daughter who comes home from college with a smile and helps me clean the hard places I can't reach.
4-A future son-in-law who takes care of my daughter who is away at college.
5-A home to live in.
6-MS drug companies who work with me to help me get the medications I need even without insurance to help with my MS.

And the list goes on.  I have a little journal I keep a list of things I'm thankful for in, and I try to keep it current.  Now, I'm adding things that matter to me because the line is very thin between what's important and thankfulness.  I truly believe greed and selfishness lead to unhappiness.  The more we dwell on what we don't have (our have-nots), we found ourselves in the 'pit of despair.'  [Princess Bride]

So as you go about your day, look around you.  See what you have and ask yourself--Does It Matter?  If your are about to buy something or do something big or expensive, ask yourself--Is This Important to Me (or my family)?  One never knows what you may find on this little journey you take.

North Side of the Mountain

In Bulgaria, a shipbuilding company has this statement in its advertisement:  “All our timber comes from the north side of the mountain.”  Why the north side? What does that have to do with timber?

The best timber grows on the north side of the mountain because of the rigors of Mother Nature. The snow is deeper; the cold is colder; the wind is stiffer; and the sun is not as warm as the south side of the mountain. The harshness of the weather is a contributing factor to the toughness of the timber. So this is why this shipbuilding company uses this timber—it is an adding factor to its hardness.  It can hold up to the extreme conditions the seas have to offer.

My in-laws told me this story from their travels in Europe.  I thought it interesting in my own life.  What 'rigors' do I put up with in life and do they make me a 'tougher' person, or do I collapse under the first sign of the trouble Mother Nature throws my way?

I know when I was first diagnosed with MS I really did collapse.  I wanted nothing more than to crawl into my hole some where and die.  Then, I decided since my little three-year girl and six-month old boy wouldn't let me do that, I would wheel-and-deal with the Man Upstairs.

Now, any one who is religious of any kind, whether Christian, Jewish, Muslim, or what have you, know the Guy does not make deals.  We are sent here to follow and learn.  So this wheeling-and-dealing was to no good.  But I must say at the time, I did feel better--momentarily.  Then, I became angry and bitter He wasn't listening to my deal making.

Little did I know, all this was what I now call 'weathering.'  I was being subjected to the rigors of Mother Nature.  I have battled the snow--relapses where I've had to learn to write and type all over again.  The wind--relearning to walk and adjust my driving all over again.  The cold--losing feeling in parts of my body where now it is just constant tingling and having to learn to use that again.

And with each step of the 'weathering,' I have become a more compassionate and patient person.  I have more empathy for my neighbor.  I see things with different eyes.

I have doctors' asking me if they could have patients call me and talk to me about my experiences since they have patients swallowed in self-pity.  Some call, some don't.

For me, summer is the brutal time of the year.  About three weeks ago, I was pulling 'a' weed and took a good fall.  I am taking longer to pull out of this slump than I used to do.  The wind that is blowing this time is a stiff gale and is making me question even my Maker's weathering techniques.  But I think in this, I need to slow down.

I have been on the go, go, go since the first green sprig poked its head out of the ground in early March.  So I have had time to smell my flowers, taste my tomatoes, watch my grass grow (and die, hahaha) and realize He is making my piece of timber a bit stronger and a bit more weathered. I am still going through my 'rigors' of Mother Nature and probably will be until I die.

Who knows?  Maybe there is something more this stubborn old tree needs to learn and another sapling I need to help out before we both break in the next gale-force wind that blows down from the North Side of the Mountain.

The Little Things 2

Yesterday I worked hard at preserving another year's crop of berries and cherries for my family to enjoy for the following months. Today, I am paying the price of my burst of energy. It seems to be that way for me. I have a lot of energy and spend it all on the things I love to do. Then, the following day or two, I spend that sitting around recovering. I used to get mad at myself for doing that--wasting all my energy. But now I look at what I have accomplished and take delight in the things I have been able to do.

Just recently, I had a friend approach me with the devastating news her fiancee is going through--the process of being diagnosed with MS. She had a million questions on what were 'they' going to do. For one, I appreciated her always saying 'they' and not 'him' or 'me.' Her fiancee will certainly need all the support she can give him. One of the concerns we talked about were all the 'little things' they may not be able to do anymore. She was focusing on the negative side of it. And I can see why with that first diagnosis and so unsure where this unknown path is taking them. I have been there, traveled it, still trudging along, and still noticing the little things.

So this post is for her and all those out there worried about little things. But I am going to focus on the positive side. It is all about adapting, moving things around, going with the flow, and appreciating those the things you love to do even if you have to do them with baby steps.

I love to spend time in the outdoors. Hiking, camping, fishing, hunting, canoeing, gardening, you name it; I love to do it. When I was younger, my family and I would take 7-mile hike back into the Bob Marshal Wilderness of Montana and spend a week at a time living out of a tent, cooking all of our meals over an open fire, fish for food we couldn't pack in our big packs, and enjoy what Mother Nature had to offer. I so wanted to do that with my family when I got older and was lucky to marry a man who hiked and hunted along side me.

With my diagnosis and the issues this disease brings, I've had to make adaptations. I still camp. I've now graduated to a trailer with a bathroom since a tent and a port-a-potty doesn't work well with my son and all his boyhood buddies tagging along. Plus,with balance issues, tripping over holes in the ground  makes for interesting issues there, too. Mind you, it has been a 16-year gradual change.

I still canoe and the laughing that comes with getting in and out of the thing creates great campfire stories for years to come. But the smooth ride across the lakes is a great thing! I still have the arm power for slicing through the water and making the canoe glide with ease.

Fishing is great! I'm able (due to my disability) to have a lifetime free fishing permit. I also am able to drive up to a lot of lakes or streams and park closer than most people can. But who needs to fish on the shore when you have a canoe!

Also, I have a pass that allows me free entrance into any National Park and reduced camping fees at all National Parks. http://www.nps.gov/findapark/passes.htm . We use this a lot during spring and fall, which are the cool times and makes it great for me to go hiking. Now, I am not going on any 7-milers in the outback. Haha. But I do small 1/2-1 milers, sometimes walking with my cane and sometimes being pushed along in my wheelchair. Sometimes, I do both--walk there, get pushed back. I think my favorite hikes were the ones we took along the Historic Columbia River Highway in Oregon and hiked to all the waterfalls along there.  We ended with the Multnomah Falls, which was spectacular! That hike took me lots of rests to get there, and lots of people shoved past, but it was worth it.  http://www.fs.usda.gov/detail/crgnsa/home/?cid=STELPRDB5139466

My family at one of the many falls.  A timed-photo--say cheese!

This is Avalanche Gorge on the Trail of the Cedars in Glacier National Park.  A trail accessible for disabled hikers.  http://www.glacierhikers.com/trail-of-cedars.html

Photo by Rick Segeberg





When we moved to Utah from the Big Sky country of Montana, my hunting days were over.  Too many hunters and not enough deer.  So, I didn't miss it too much when MS limited my balance and walking.  I do crave good venison occasionally, though.

I still garden and this it where I do myself in.  Heat in UT is brutal so I have acquired a cooling vest.  I go out early morning since the evenings do not cool down.  I no longer have a 1000 sq. ft veggie garden but am working on getting a few raised beds so I can do more.  I have flowers, all sorts of fruit trees, grapes and berries to keep me happy.

Moral of my story, adapt.  Keep plugging away.  Look at all the little things around you and what you CAN do.  Not at the little things you CAN'T do.  When you start going down that road, it is hard to come back.

The Little Things

Last Friday, my husband, Rick, and I were sitting in the stands watching a minor league baseball game.  We were trying to remember the last time we had gone to a game, where we had sat, what we had ate, and decided it was way too long, since we couldn't remember any of it.  Surely, it wasn't that long?  Wasn't it just last season?  But no, it must have been two or three seasons ago, since we had brought so-and-so with us and they weren't around anymore.

That got me to thinking about a fishing trip we had been trying to plan for the last few months.  So far, it isn't working out and summer is half gone.  Between his jobs and my part-time one, time is fleeting.  We can't even seem to squeeze in an afternoon in to run up the canyon.  Rick is an adjunct teacher and since all the other staff took summer off, he is left hold the bag.  We do need the money to pay for all my medical needs, so I am not complaining.  It has just started me thinking about the little things--the things we like to do.

Are there things you have forgotten to do because life is busy?  Or maybe you think you don't have the money?  Or you've gotten to 'old' for it?  As I was sitting there with my hubby enjoying our brief evening, I thought of a few little things I was going to take time to do before summer (or life) passed me by--and I started at that game.

1. I sang really loud when the song "Take Me Out To The Ball Game" came on.
2. I had baseball game junk food--AND enjoyed it.
3. Write a thank you note to an old mentor apologizing for being an ungrateful teenager.
4. Enjoy the birds singing in the morning--even if it is 4:30 am.  I am up heading to the bathroom anyway.
5. Take a Sunday walk with my husband.  It is free and he can push me in my wheelchair.  Say hi to any of the neighbors that happen to be out.
6. Play pick-a-boo with the little baby in the row in front of me in church.  He's a cutie.
7. Make the bread my son has been bugging me to make.

As I started making a 'little things' list, I noticed my spirits lifted.  It is almost like my 'thankful' list.  Some of the things were wild and crazy, and I would never, ever do them, but it still felt good to think about them.  It was kind of like taking 'happy' medicine.

There are many 'little things' in our lives waiting to be rediscovered.  What have you lost?