Monday, December 11, 2017

The gift of family

Every year we have the tradition of getting the extended family together and having dinner and a white elephant gift exchange.  It's probably one of our favorite get-togethers.  There's about 25 of us when everyone can come, yesterday we had 17.  Yesterday was also the Bronco's game, so a win after a little dry spell added to our fun!

We all brought our own meat to grill and a side to share and Grandpa and Grandma Rose made us a homemade cheesecake.  It was super super yummy leaving only one piece remaining. (This pic was taken BEFORE my husband and I's Canasta game in which I had to have another piece.)

We topped off the evening with our white elephant gift exchange and there were a lot of awesome and fun gifts this year....this one taking the cake for the most creative. (An Ipad)  We had a great time!
I reflect on these types of parties from previous years and how I would prepare for a couple of weeks, worry about silly details, and took forever afterward to clean up and recoup.  Things are much different now.  Some of these changes have happened over time, and some due to MS.  The work involved?  Sending out a few texts to organize and remind, and about an hour of setting up a couple of tables and a few decorations and stringing lights on the railing.  That's it.  Everyone did their own cooking (my son helped out a lot) and clean up only took about 1/2 hour. It was super easy.

As I sat in church earlier that day, I had time to quietly think during the sacrament.  I could still strongly feel the impressions I had had a couple of days before at the Piano Guys concert when they performed Oh come Emanuel.  I felt a peace about my MS and actually felt a little as if I had received a gift due to its presence.  My previous life was full of worrying.  I worried about everything and everyone, my students, my family, my neighbors, my friends.  I felt like I needed to constantly be aware and working to help everyone.  That is not a bad thing in moderation, but I felt constant responsibility for everyone around me.  It was physically and emotionally exhausting.

Now?  I work under a different set of rules, many of which have been taught by necessity due to MS.  I try to pray each day that the Lord will inspire me as to who I can help.  I follow those inspirations and know that that is enough.  He will take care of the rest.  I try not to worry about the small things as much.  I'm finding pleasure and peace in things of significance and have greatly simplified my life.

Sometimes I miss all the things I could do before and the activities I was able to be a part of, but I have more peace.  I count MS as the reason why I have this blessing.  Although I hate many things about this disease, and it frightens me at times, I have to say I'm grateful. 

Today?  It's my day off....nothing on the calendar (YAY).   My goals for the day?  Blog (which I'm just about done), and paint.... and treating myself to a lot of nothing after such a busy weekend.  I'm getting to understand my body better with each passing day and I know if I want to be able to work and other things.....a day of rest is my ticket.  I've known this for a little while, but I'm starting to be able to not feel guilty about it.  There something healing about a day like this.

keeping family connected
having fun with new technology (just put in a security system and my Echo Dot....super fun!)

Saturday, December 9, 2017

Because they risked...I too am blessed

Due to the previous morning, I was a little nervous about being able to conduct a meeting at school at 7 am, but I was blessed.  My body fully cooperated.  Truly a gift from Heaven.  The day went well.  My students were awesome as usual, but the last period kind of "cooked my goose" as my grandmother would say.  I had a contest between classes and served a pancake breakfast for the class with the most passing grades.  Bless their hearts.  They acted a little like 5-year-olds on Christmas day, full of energy, chatter, and couldn't contain their big bodies.  I had to shut my door after school ended and take a few minutes, head on keyboard, to gather strength to clean up and get my body home.

Why lied ahead for me was something I had been anticipating for months.  I went home, crawled into bed for about an hour to allow my body to re-fuel and off we went.  We were going to see the Piano guys in concert, a concert worth every single penny.  We're not big into piano or cello concerts, but these guys are different.  They are very entertaining and they put their heart and soul into everything they do.

We went a few hours early, trying to do everything right to avoid big crowds etc.  We ate at our new favorite restaurant in this city and had something called Parrillada.  It was amazing!!  It was the first time I ever used my handicapped placard.  It stung a little, but I tried not to think about it much.

We arrived about an hour early and only have to fight little spots of crowds.  It was awesome.

I only have a few minutes to write, but I wanted to share my experience from the evening.  The two main performers were never afraid to share what was truly in their heart.  They didn't shy away from giving glory to God, or to be "real" with the audience.  One touching moment came with the pianist share his deep appreciation for the audience, an audience that was from his home state and earnestly prayed for the safe return of his daughter, who in the end, lost her life in a hiking accident.  My heart remembered that time and how we knelt each night and included this family in our prayers.   It touched our hearts.  His strength was amazing as he continued to share his talent even though we knew his heart had to still be breaking.

I watched in awe as they let go of all earthly cares and let their music flow through their bodies and create something of beauty.  Nothing in the world seemed to matter to them except to share their talent and spirit with us.  They "took off the mask"....they risked.  They could have worried about what others might think if they danced like this or acted like that....but it didn't matter.  Their true spirits were felt and there were moments that brought the spirit of God into the venue and create teaching moments of the heart for all of us present.  Those moments were different for everyone in the room, but for me, it came when they performed the following song.

The cellist prefaced this performance by talking about the words of the song and emphasized the word "ransom" that was present in the lyrics.  As they shared their interpretation of this song, tears streamed down my face.  I felt as if the Lord was reaching out to my heart. My spirit, for a brief moment, felt a communion with my Lord and the intense love He feels for me, a love He has for all mankind.  I felt in that moment that all would be okay in my life because He was by my side and that this earthly journey is only a moment in all the great things yet to come.

I've been taught that we can't truly know things until we are taught of the spirit, that is when the teaching moves from our head to our heart.  Last night my heart was taught.  It caused my love for my Lord to be deeper and has given me a new conviction to continue bravely on my life's journey because I know He is by my He always is.

Thursday, December 7, 2017

Morning warrior

I awake to the rustling of my husband getting out of bed.  My eyes not yet open, but very aware of the reality of the adventures my body is going to give me for the day.  That MS headache, a band around the back of my head, the burning feet, hands so swollen I can't make a fist, and nerve pain throughout my body making it difficult to lift my body out of bed.  I wish I could say that this was just my day today, but it's most every day.  I want to cry and whine about how this is unfair or how I long for a day that my only obstacle to arising is a little fatigue, but I know it will do no good.  I fight with all the inner strength I have to begin moving.  I am an MS morning warrior.

I sit on the edge of my bed, sometimes with assistance from my husband and stare at my feet knowing that that first step is going to be a painful one.  It's pep talk time...."you know once you get moving everything will improve and YES you DO have the strength to make it to the gym, you know you will feel better".  That's my morning mantra.  I stagger into the bathroom and begin to get ready.

My mind goes to all of those faces online, those smiling faces of those with MS that are warriors, who I know in private deal with very similar issues and have to push each day to make each day the greatest.  Their strength encourages me to continue to fight despite the extreme pain, such as now to even use my fingers to type.  I know their lives aren't perfect, and I realize that what I see are only the good parts, but they keep on fighting.  I too am fighting.  It is not easy, especially as I go to work and paint a face on that masks the intense struggle it took to even walk through the school doors.  I may not be climbing mountains or running marathons, but I am a warrior!  I will continue to fight!

Tuesday, December 5, 2017

Don't break the rules!!!

From the time I was little, I've always been working towards a goal, had a cause I was fighting for, never let grass grow under my feet kind of gal.  Although it may sound like a good thing, MS has opened my eyes to all the unnecessary rules I have for myself, most self-created, and ones that are not good for me and cause stress.  Stress is one of the number one things that can wear out our bodies and bring a person with MS down quicker than quick.  So, for the past little while, I've been trying to look at the unnecessary rules in my head that cause me stress.  It has been a very revealing adventure.

So here it goes.....I'm going to put some of these crazy rules in writing. You can see some of the stupid things that go on in my brain.  Oh....this is harder than I thought! :)  I know this will sound pretty Looney Tunes even though I know we all have this to one degree or another.

1.  You should always look your best for your spouse.  Make-up on even on the weekends, showered and looking nice when he comes home, etc.  Okay....any of you old people like me out there who have read "Fascinating Womanhood of Fascinating Girl"?  That was like the family bible in my day for girls and this is one of those rules.  Yes, do I believe that out of anyone in your world you should look the best for your spouse, but having no make-up days and still being in your PJ's in the afternoon after being sick should be totally okay.  That came to light yesterday when I had stayed home from work (MS kicking my butt) and showered at 4:30 because I knew my husband would be home soon....only because of my rule in my head.  Not a big deal, but one more thing to add unnecessary stress to my inflamed body.

2.  Same as number one, but add having the dishes done, the house picked up, a meal on the table.....etc.  Honestly, my husband doesn't even care, in fact, he tells me so on a regular basis.  He actually welcomes a day now and then to just have a good ole PBJ for dinner or to cook for himself.

3.  Then there are all the rules around religion that either I created or were instilled in me, not by my church, but by my family.  There's a laundry list of these. Yes, if I was healthy enough to "play" on Saturday, I still could actually be sick on Sunday (a childhood script).

4.  If you are sick in the morning, you are sick all day and can't go out or do anything.  That is definitely a childhood script.....probably a tactic my mother used to make sure we didn't stay home from school when we didn't need to.  Now it feeds into guilt when being more active in the evening after staying home from work or church earlier in the day.  Feeling worried while at the pharmacy on a sick day for fear someone will think you are well and are just faking it or maybe someone seeing you driving when you are actually going to the doc.  If you are good enough to drive, you are good enough to work....that's stupid.

5. How about all of those work-out rules.....didn't get that last set of exercises done....all is going to pot.....or eating ate something crappy once so your body is on a path to no return.

6.  Then there are all the rules I have for what it looks like to be a good person, a good mom, or to be successful.  If I wrote down all of those I would be carted off in one of those pretty white jackets that keep your arms warm and tie in the back:).

Rules......How many of our actions are fueled by outdated and ridiculous rules we have created in our head, many created in childhood, that don't serve a purpose anymore yet we still abide them?  How much of our thinking is black and white thinking.......if we do this.....this will happen (for example the exercise things...."If I miss one day of exercise...I will not have energy again or my brain is on the fast track to atrophy") causing undue stress.

Rules are important.  They can guide and direct us and keep us on track, but MS is teaching me to "let go" of things that aren't important.  It's amazing how much there is to let go of.  My goal, for now, is to recognize and let go of as many of these stupid, energy zapping rules that detract from the important things in life.  I know it won't happen overnight.  It's taken a lifetime to create them.

Life right now?  It's good.  I have all my Christmas purchased (thanks to Amazon) and am slowly getting things wrapped.  Our family is gathering for our annual Christmas party on Sunday and I have some fun white elephant gifts purchased (Potty putter for all our golfers to practice with...a motion sensored light that illuminates the toiled at night).   I actually didn't wait to the last minute this year to scrounge something from around the house.  It should be fun.  Today my body is stronger.  I'm headed to the gym and a couple of appointments.

letting go
seeing the world for all of it's beauty

Monday, December 4, 2017

Thank's for "granting me permission"

As I begin to write, I realize that my thoughts do not only apply to MS, but to anyone who is faced with a great change in their life.  It may be a diagnosis, the loss of a loved one, a change in career path.....any large change.   Our journeys may look different, but we all have to take that journey of acceptance to get to a place of peace again.

I am only 14 months post-diagnosis.  I realize that I am in my infancy when it comes to knowing about this disease and how to live with it, however, I do know what it is like to live through that first year.  A year of uncertainty, fear, learning, and a new level of loving.

During this year I have handled these new situatuations in a variety of ways.  During these times, I rarely recognized what was happening and why I was behaving a certain way.  Although at times I feel like my journey is unique to me, as I read the stories of others, I realize how much we all have in common.  Sometimes it was easy to want to feel as if I should have been stronger, but I am learning to know that our behaviors and perceptions are all part of the process of growing and gaining acceptance of big change.  I am grateful for those around me who have "granted me permission" to go through these stages and have respected the process, a process I didn't even realize I was going through.  They didn't judge me and allowed me to figure things out while still loving me.

I look back at my first year.  There was so much bouncing between sticking my head in the sand and trying to convince myself that I didn't really have MS.  I was so afraid of the idea of what it meant for me and my future.  Then I went through the stage where I had convinced myself that although I had it, it wasn't going to stop me.  This was my "jumping off mountains" & "whitewater rafting" stage :), going to 3 different exercise classes to prove to myself and everyone that all was well.  I'm not saying that I shouldn't stop doing those things, but those things weren't things I typically did.  Hey!   I'm afraid to stand on a chair to change a light bulb :).  I think this stage lasted the longest and included excessive traveling and many other things until inflammation halted me in my tracks.

Now?  It's more about learning acceptance.....getting the handicapped placard and using it when needed, asking for a wheelchair at the airport, looking towards the future and the possible need of an accessible home.  Do I still bounce around in this journey?  You bet.  Case in point...Saturday I was feeling SO good.  I went to my boxing class and gave it my all and then did an additional resistance training workout.  It felt awesome.  By the afternoon I could hardly stand up.  The next day I got ready for church, made a feeble attempt to go to choir first (at someone's home where we have to take off our shoes), and found I barely had the energy to take off and put on my shoes.  I ended up coming home and stayed in bed all day, unable to move due to nerve pain and fatigue.  I'm STILL learning.

Although I'm still learning, I can see growth.  I'm learning to fight those "type A" personality tapes in my head and am doing what's better for my body.  Many of those tapes are based on worrying what others think, a tape that is on the top of my list to destroy.  I rarely miss a day of work, but today knew that if I didn't want to further damage my body, I needed to stay home and rest....something I rarely do.  I always push through, sometimes at a very high cost.  Before I would have felt guilty, but now I'm learning to feel more empowered, taking charge of what is best for me without worrying about other things that really don't matter.

So why do I write this?  For two reasons.  To remind myself that even though sometimes I feel like I'm stuck in the same place not making progress, I truly am growing and learning.   The other reason is to express my deep gratitude for my dear friends and family who despite my up and down journey, have "granted me permission" to do it in my own time and in my own way without judgement and with boat loads of patience and kindness.  I am truly blessed.  Here's a couple of recent pics of my cute kiddos.  I know this journey hasn't been easy for them either, yet they are (aside from my husband) some of my biggest cheerleaders.  I love them so much!

Saturday, December 2, 2017


It's been very interesting to see how taking this new DMT has calmed my brain and made it so that I don't have a desire to write anymore.  Before, writing way my outlet.  It was a way for me to put my thoughts in front of me so that I could sort them out.  When they were swirling around in my head, it was hard to always make sense of everything and keep grounded. feels clear and calm for the most part.

I am learning my new stride and understanding my body better with each week that passes by.  This time, instead of being surprised that I had the energy for an activity then totally crashing afterward,  I anticipated the toll on my body and adjusted accordingly.  I prepared ahead for Thanksgiving weekend.  I took short breaks when I could, and I planned a couple of days after for resting.  I also was aware that there might be a mini brain and body flare-ups and to just roll with them knowing that they would likely pass.  Planning and allowing my body to do what it needed to do to heal after made all the difference in the world.  Instead of getting freaked out by the brain stuff, I just worked with it.

Case in point....things were going well, but on Tuesday after going to a full day at work, the anxiety reared its ugly head.  The next morning I decided to go to the gym to help get my body moving and to hopefully get a little brain clarity.  The racing thoughts were overtaking my brain.  As I was driving, this sign seemed to scream at me.  I pulled over and took a pic.  It said STOP!  I knew I needed to take a look at what was going on in my brain from an outside perspective.  I knew I needed to realize that it was just brain inflammation talking and find ways to keep it otherwise occupied until it calmed down.  It took some time and effort, but because I realized that the thoughts weren't rational and that they would pass, it gave me more patience as I moved through it.  I hope that makes sense.

I still do have some worries, but they are not all consuming.  My tests results are already showing very low white cell counts which can put me at risk for PML.  I test again in about a week and we'll take it from there.  I'm trying to not think about it and just worry about what is in my control.  It is much easier to do when I've not been overdoing.  

Back to happy stuff.  The DMT has helped tremendously with the fatigue and has renewed some of my old passions such as art and fixing up my home.  I'm actually a little excited to go up in my loft and paint and have done a few more projects around the home to update it.  I'm not much of a home decorator but have had fun picking up a few things to change our home up a little.  My daughter in laws advice?  Just buy things that make you happy.  Awesome advice.  Hobby Lobby has been my friend (especially with all the 50% off sales) and I've picked up some really cute things.  I'll post some pics when I get more done.

I've also been surprised how much I am enjoying painting.  It has caused me a lot of stress in the past, but I started a painting a few days ago (it still needs a LOT of work) that speaks to the "invisible disabilities" topic.  I'll post my initial progress, but know that I still need to fix a lot of errors and paint the tears on it.  I need to find the photo online again so I can give credit to the photographer.

Life is good.  I'm learning each day and trying to live life to it's fullest while I can.  Last night we went to Aida and I'm headed to my boxing class in just a minute.  It's only once a week, but I absolutely love it when my body allows me to go.  You know, although DMT's can be so scary, right now they are allowing me to live life again.  I'm so grateful for that.

Monday, November 27, 2017

A "grand" Thanksgiving

Things have been so crazy busy that I haven't hardly had a moment to write.  I can't neglect to capture some of the wonderful things that have happened over the past week.

I have been getting ready for this last week for over a month.  I didn't want to wait until the last minute and use up all my energy by cleaning and other things.  I wanted to be able to enjoy every minute of my children's visit. I updated a bathroom which was fun.  Probably things I should do whether company comes or not :)

My daughter arrived with her boyfriend on Wednesday with their little puppy.  I can now say that I have a "Grand" puppy.  His name is Bentley and he is the cutest thing ever.

Thursday we had all 25 of us over for a big feast.  My Dad and his wife, my sister and her husband, my sister-in-law and her family, and all my children and their families.  This year was much easier.  I knew I couldn't host it and do all the food with my new MS body, but did the turkey, gravy, stuffing, and everyone else brought the rest.  It was so much easier.  I'm slowly learning to let go of things I used to do.  

After everyone left we played a few games and I helped my granddaughter finish painting a little birdhouse.

The next day my other daughter flew in with her little boy whom we also love so dearly.  I knew everyone would want to play with him, so I made sure I was at the door to greet them before anyone realized they were there so I could get some grandma snuggles in.   He and the dog bonded immediately and laughs and giggles filled our home.

The girls ended up going to my sisters for their dogs to play and to try their hand at "pole fitness" in my sister's basement.  I had a hard time deciding what I wanted to do, but ended up choosing to golf with the guys.  It was a gorgeous day and towards evening the deer started to outnumber us on the course.

The next day was a bit of a lazy day ending with a homemade sushi making night and games and a few naps interspersed in between.

 This is my poor son trying to get the eel sauce that I pretty much turned into "eel caramel sauce" out of the bottle because I cooked it too long.  Sad thing was....this was my second batch.  I did the same to the first batch.

Sunday morning came.  It was time for everyone to head back home.  We had an awesome time and it was sad to see them leave.  I played a little more piano with my grandson.  I loved his little face as I started to sing.  I will miss him so much.

I definitely had a GRAND week with all my kiddos and grand kiddos.  I'm learning to adjust to this new body I have, taking a few naps, sitting out on the last hole in golf, sleeping for a couple of days after, but I did it.  I know the medication is helping me a lot and I hope I'll be able to continue on it.  I feel very blessed.

I'm just laying low today too in preparation for heading back to work tomorrow.  I did a little Cyber Monday shopping and want to work a little on my painting.

Life is good.  I am very grateful.