Saturday, February 17, 2018

Cali...here we come

It's president's weekend and my husband and I took a little extra time so that we could see our daughter and her family.  Our flight was good.  It is good to get out of the cold and see some sunshine.  I've been a little worried about the trip because my MS has been giving me some trouble this past week, but I rested up for a day or so and so far it has been awesome.

I love my daughter and son in law, but my heart misses my grandson more than words can express.  We were greeted by his darling smile and he "helped" us with our luggage up to their apartment :)  The evening was full of playing ball, reading books, and of course...him having to not only take one of our fingers, but both of us to walk around the house several times during the night.  He didn't have a nap, but was cute as a button all night long.
 
 
Later that night we went to a restaurant.  We overheard a little boy next to us, probably about 7 years old, talking all kinds of stats about football.  My son in law couldn't help but overhear their conversation.  He spoke out and said, "what about those Broncos".  The little boy replied, "The Broncos suck".  We couldn't help but laugh as my son in law was wearing a Broncos hat and plays for the team.  The conversation went back and forth between our table and theirs.  Pictures were exchanged and my son gave him his hat to keep.  The mother came up to us and thanked him for his time and shared a little bit about his story.  Our hearts were touched.    They thanked us for our time saying it was a special thing for them, but the opposite was true.  It was such a special experience to meet this young man and his fervor for football.  He shared his light and his passion for the world.  What started out as being just a night out with the family turned into something special for us.
These moments continue to remind me how small and little things can not only bring light into the light of others but for ourselves.  No one is ever going to come up to me and want my autograph, but a sincere thank you to a server or hostess at the restaurant can make their day and can make me feel good inside and brighten my day.  We truly can change the world one act of kindness at a time.

Wednesday, February 14, 2018

A moment in time

I'll be honest.  I have been dealing with so much fatigue.  You know the MS drill...body that isn't able to take another step, legs that are on fire due to nerve damage, foggy mind.  These past few weeks have been full of things that I haven't felt like I can say no to...all the things in my last post, presentations, doc appts, field trips, packing stuff, and my body is paying the price.

 I have a trip on Friday and I know I need to get strong.  I was out an about all morning, but have been sitting in my chair for the last 3 hours, unable to hardly move.  There are so many things I want to do, but my body has shut me down.  I want to finish packing the basement so my kids have a place to move stuff in.  I want to paint.  I need to pack.  I would love to go out with my sweetheart for Valentine's day.  I need to do laundry so I have something to pack, but I don't know if any of it will happen.  I know I need to take care of myself but am not sure how to stop this merry-go-round I am on.  It started out okay because my health has been better than ever, but I have over-done.

As I sit here writing, wishing I was able to be up and moving, I am still very grateful.  I have so much good in my life.  My kids are amazing.  I have the best husband ever.  I love my job and the people I work with.  I live in a safe place and in a cohesive community that works together for the good of all.  We are not rich, but we have what we need.  We live comfortably and with jobs that are stable.  I have a darling grandson that I love to video message with.


My legs aren't working well...I had to rely on others to be able to get myself up and down the bleachers at my nephews' basketball game yesterday, but I feel that this will pass and I will have better days again. 

A year ago I would have been freaking out about how I feel, wondering what was around the corner.  Now?  I'm still a baby in this new body, but I've learned that today is just a moment in time.  I will probably have much harder days and some really awesome days ahead.  I just need to roll with the flow and not get discouraged.  I need to be happy with what I can do and wait for that day to do some of the other things.  I also need to be okay if those things never get done.  I'm learning.


Thursday, February 8, 2018

Staying on the tightrope

Spoiler alert.  I don't know what I'm going to write, but the feelings I have right now are not real consistent with the title of the blog.  If there is someone out there looking for a positive, uplifting boost for the day, this will probably not be it.

This has been a very big week.  We are getting ready for my son and wife to move in, a grandchild cheer competition, my daughter's birth sisters baby shower, I've worked a lot, had my bi-weekly painting lesson....nothing too out of the ordinary, but added to that were two very emotionally charged days.


Monday I was asked to speak with my husband on mental health awareness at one of the local high schools.  I did this once before in an impromptu way and spoke briefly about my brother.  My body was shaking afterward, but it was nothing that didn't go away shortly afterward.  Monday was different.  It was the first time that I shared my story with a large crowd.  I wasn't too nervous until it got closer.  As the time arrived, I wondered if I had the strength to do it.  I asked my husband and a friend who had encouraged me to do this to say an extra little prayer for me.  I was truly scared.

This was a district I taught in.  People were there that I knew.  Was it the right thing to do?  All questions rolling around in my head.  I stepped up to the plate and shared my story.  I think it went okay, the organizer said she thought it good.  She said that by speaking out, it was teaching by example and was good for others to see that it was okay to share your story.

  As I got into my car, tears started rolling down my face, not just a few, but tears that wouldn't stop...not on the way home and were with me off and on that night and the next day.  I tried to find the source of the pain so I could get control of it, but even at this moment, I'm not sure what it is.  It is probably a combination of fear of the ramifications of disclosing, whether I did the right thing, and triggers of memories from the death of my brother and attempts from people very close to me.  It didn't help that the next day was the day I was to go to the doc to find out my results.

I felt, and still do feel, very flat...almost without feeling.  It's bordering on depression, but am trying to walk the tightrope of good brain health working hard not to fall off the rope.



I had my appointment. Waiting for the doc to come in seemed like an eternity.  It was nothing but good news.  No NMO.  My liver enzymes, while still double the normal limit, have dropped by half.  My Vitamin D levels are normal for the first time in years and my lymphocytes are on the low end of normal which means less chance of PML.  Everything was good.  The crazy thing is though even though I'm very very happy and relieved, I can't shake off the aftermath from Monday.  I don't know if it's depression rearing it's ugly head, or if my body and mind are just worn out from all the emotional things it has had to go through.

We have 3 more presentations.  I'll be honest...I don't know if I can do another one.  I have choices though.  I can only talk about my brother like I did in the first presentation.  I can work with my therapist to see if I can deal with the triggers so I can continue to do the presentation where I disclose, or I can have someone else fill my place.  I know I'm not boxed in.  That helps.  I do feel strong enough though to put my mental health above all of this and step down if needs be.

For now?  I'm just keeping busy and trying to stay "present" and out of the racing thoughts in my head.  I know I need to drink more water and stay hydrated and continue exercising.  Those things always help keep me on the tightrope.  I want to just crawl back in bed, but I know that staying busy will be good for my brain.  I've started 3 new paintings (you need to have more than one going because it takes 3 or more days for the paint to dry enough to work on it again).  One is a palette painting (a first), and my first commission piece, and one mental health piece (it's of 2 hands, one pulling the other up).  I hope to get enough cleaning done that I can work on the hands painting.  It would be good for me.

What am I grateful for today?  I'm grateful I can blog.  I'm grateful to have the money to buy the things I need to paint.  I'm very grateful for my better health and how the DMT is making it possible for me to return back to a more normal life....I'm very very grateful.  I'm grateful for a sweet husband who is always there by my side and puts up with not only the downtime but my crazy self in the uptime.  I'm grateful for my therapist who helps keep me grounded and is patient as I learn the same thing over and over.  I'm grateful for my children who support me and are understanding when I'm not the same person I was before.  Most of all, I'm grateful for my Lord and Savior who felt all of our pains and sufferings so that He would know how to PERFECTLY succor us in our time of need.

Sunday, February 4, 2018

The unknown

It's funny how when things are better in life, I don't have as much of a need to write.  My body is stronger and I'm able to be more involved with things and have less time to write.

My appointment is in 2 days...the one that tells me whether or not I have NMO.  I'm obviously not a doctor, but from my understanding of the results of the tests I've received I don't have the antigen that is often present in the blood with NMO and my MRI's of my spine came back free of lesions.  My bloodwork also came back.  The results are hard to read due to the format they came in, but it appears that although my liver enzymes are high, they appear to be lower than last time.  My vitamin D levels are normal for the first time in years, but my lymphocytes are very low, nearing the level of concern for PML, not a way I want to pass to the other side.

I was diagnosed a year and a half ago with MS based on the bands in my spinal fluid, yet only one small possible lesion on the brain (not conclusive).  My husband asked me a question a couple of days ago that kind of shook my soul.  He asked, "What if they tell you-you don't have MS?"  I have spent a year and a half coming to terms with having the disease.  I finally feel like I'm at a place of acceptance.  I've gone through periods of grieving the loss of the body I had before.  I've had times of denial where I thought if I just worked harder it would go away and now have come to a place of peace.  The thought of not knowing what was going on and having to start over in this process is very unsettling.  I've worked hard to be okay with this.  I've adjusted my life, learned new lessons, and am better able to roll with "what is".  I guess I'll know in 48 hours.

Until then, I have a busy week ahead.  I am working MWF and my husband and I have another night at a high school where we present about mental health.  It seems that many of our school teams are competing at state, so there are games I want to support.  My son and daughter-in-law are moving in on Saturday to save money while going to school (my daughter in law in nursing school and my son preparing for med school), so I need to clean out the basement so they have a place to put their stuff.

I've started 3 new painting projects, all different, and something I've never done before.  One is a palette painting, another is a commission piece that is 30 X 40 (yikes), and a monochrome one that is just for fun.  I need about three going at a time because it takes about 3 days for the paint to dry before you can work on it again, so it gives me things to do each day if I choose to.
As I skimmed over this post for errors, I realized this post doesn't truly reflect how I feel.  I am doing well.  I feel optimistic about life.  My brain feels clear and alive.  My body feels stronger than it's felt in months.  

Some of this I attribute to the DMT I'm on right now, but I also can't discount a couple of other things I've implemented more fully into my life this week.  I have been much better at reading the scriptures each day and have had the opportunity to reflect on the great things around me.  I have a friend who has been sick with an illness that has kept him down for a few weeks.  Since there is not a lot I can do to help out, I decided to send a positive story from my life every day or so.  Stories of random acts of kindness.  It has been such a good experience for me, actually a reverse blessing.  Instead of writing in my blog, I have used that time to write these messages.   There are truly angels around us, many of which are the people we rub shoulders with each day, that bless us in so many ways.  Opening our eyes to them can be life-changing.  It has for me.


Sunday, January 28, 2018

Higher ground

My heart is full, but I have no idea what to write about.  Today is our Stake Conference for our church.  That is where congregations who usually go to different church buildings from our religion all meet together for church under direction of the stake president.  I love to sing in the stake choir.  The power that is felt when all of these vocalists join together is amazing.  I look forward to being a part of it every year.

Our adult meeting last night renewed my conviction to spend more time on holy things such as reading the scriptures, time in prayer, and Sabbath day service.  I know I have a lot of work to do in those areas.  They talked about how our trials will help us become stronger, bring us to a higher ground, and prepare us for living in these last days before our Saviour comes again.

Higher ground?  I was actually thinking a lot about that yesterday.  I was thinking about who I was a year ago and who I am now.  My MS has given me opportunities to grow in so many ways that I wouldn't want to go back to.  Sometimes when I apologize to my children for not being able to do certain things due to my MS and for the new person I've become, they have said they actually like me better this way :)  I was always spread between a million different projects, never slowing for anything.  Now?  I plan out my week, prioritize what I think I can do, and let the rest go.  I have a lot more free time because I HAVE to plan time to rest during the day if I want to do the things I desire to do.



Yesterday was a case in point.  I try to support the various activities at the school that my neighbor children or my students are a part of.  Swimming is not one that has been on my list, but this year I have a student who is the captain of the team and yesterday was potentially his last meet.  It was about 1/2 an hour drive from my home.  I looked at my calendar for the week, knew I needed to go to the art store right by the meet, so planned to do them at the same time to conserve energy.  He had 2 races.  I went to the first, but then had the choice to stay to see the race at the end or go home and nap to be able to sing that night in the conference.  I wanted so badly to stay to the end, but I knew that choice could have bad ramifications.  I saw his first race.  Took a few pics and congratulated him, went to the art store, and went home and napped.  My evening turned out great and I felt awesome.


I'm learning how to choose between "good-better & best".  It's so hard because I want to do it all.  It would have been good to see all his races, to wait and get my pics printed at the art store, to go on time to a sweet couples reception or totally miss it due to previous responsibilities, but I chose to leave the meet early, have someone else pick up the prints on Monday (so I can have a day of rest to be physically strong so that I can speak at a conference the next day), take a good nap, and go early to a reception as opposed to totally missing out so that I could be healthy.  I know I'm not totally there though because the second I feel better, I start packing my schedule.  I still have a lot to learn to truly make this change a part of my life.

I know the Lord is trying to teach me lessons.  Lessons that allow me to live a more balanced and healthy life.  He is teaching me how to spend my life doing the things that are the best and weed out some of the things that make my life stressed and complicated allowing more time see more clearly, feel of His spirit, and be "present" in mind and spirit when I'm with those I love.  He truly is taking me to "higher ground".

Sunday, January 21, 2018

This is me part 2

In my home, I have a little loft over the garage.  It is carpeted, has a little window, and although it has 2 beds in it for when we need more sleeping space for company, has become my art studio.  It's located at the top of a set of stairs next to my bedroom.  I needed a place where I could leave my easels and tables up all of the time.  If I had to tear everything down every time I wanted to draw or paint, I would probably never do it.  All my paintings stay safely tucked out of site where no one ever sees them.
I've only been exploring art the past 3 or 4 years.  It started right after I finished my Master's degree and didn't know what to do with all of the extra time I had once I'd graduated.  Art came at a very important time in my life and became a very good distraction as I started entering the MS and mental health world.  I started drawing first, exploring pencil, airbrushing, and then charcoal.  I really like that medium.  It was very therapeutic as I paid attention to every line and detail in the image.  Although they weren't masterpieces, they did resemble a living being and that encouraged me to continue.  I wish I had a pic of the first one I did.  I may have to text my daughter and have her send me a pic to upload later.  Here are a couple of the first ones I did but never finished.  They are of my cute grandnephews.  With each picture, my confidence grew a little more, yet not enough to give them away or even finish them.
I then decided to draw my nieces' favorite pic of her dad (my brother that we lost to suicide) for her wedding gift.  I actually blogged about drawing that pic (link here) and drew another for my daughter's wedding.  My confidence in showing others my work started increasing, but it took a long time before I could frame some work and have it sitting where others could see.  It's still not in a permanent place on a wall. Over the past year though, I've become more comfortable showing my drawings, but my paintings....NO WAY!!  Painting has been a battle.  I have not taken to it as easily and have had much more frustration than pleasure from it.....that is until yesterday.
I finished a couple of pieces yesterday and felt very good about the outcome.  There was one I did of some objects around the house whose sole purpose was to teach me several painting techniques on.  Having a pretty finished piece was not the intent, but to learn from.  As I finished it, I was super excited about the outcome of the pot and the cord on the iron.  I wanted to share my excitement with others.....but expose myself....become vulnerable and open to judgement????  These paintings had my heart and soul in them.  It would be like exposing myself.

 Well, my excitement trumped my insecurities and I decided to put my 4 finished paintings on Instagram. It was less intimidating.  My Facebook account has a bajillion friends, but I keep my Instagram down to very close friends and family.  I took pics of them and posted.  As the evening progressed I became more and more anxious....did I do the wrong thing?  Would people think I was trying to get attention or was fishing for compliments?  What if others hated them and I was just blinded as to what they really looked like?  All these stupid thoughts kept rolling around in my head.  I finally let it rest and went to bed.  I had risked.  I had said, "This is me" with no excuses, but it was still SO hard.

Stepping out into the ring for the first time was really hard, but in a little way, is starting to feel more comfortable.  Each time I take a brief moment to step into the ring and show a part of me, it's easier.  It is freeing in a way.  It's almost a form of self-acceptance.  "This is me.  Take me as I am".  A place of peace.  So....here I am....my first 4 pieces that are all my own (not my teacher painting half of it like my Native American piece I posted).  The mask is entitled "Take off the mask".  I think I've posted the one of the girl entitled "break the silence".  The last is a little one I did in 2 or 3 hours of my youngest when she was a little girl. I love it because it was a time of pure joy for her.  I did it quite awhile ago when I first started and was trying to find joy in painting because painting was such a battle.

My goal?  Keep taking baby steps into the light, into the ring.  Be me, with no excuses.  As I re-read my first post on "This is me" for spelling errors, I realized that every paragraph that I wrote about me, I began with a negative comment or an excuse.  I almost went back and took it out, but realized that it represented truth in where I was at at the time.  I should leave it in, but work towards "No Excuses".  

Each day is a new adventure in our progress.  Each day we learn new things that help us become a better and stronger being.  I'm grateful for that chance and although I kick and scream at times at the challenges, I am truly grateful.  Without challenge, we couldn't grow.

Looking forward to an awesome day!









Saturday, January 20, 2018

The waiting game

It's been almost a week since I've posted.  I try to keep the blog positive, but in all honesty, have been struggling with 24/7 generalized anxiety, anxiety that doesn't give me a break....it's even in my dreams.  I know it's due to playing the "waiting game".  Waiting for test results to come back.  Waiting to find out if there is a new diagnosis.  Waiting to find out if my risk has further increased for PML and if my liver enzymes have double yet again.  I know there is nothing I can do about it, so what do I do?  Distract, Distract, Distract.

I'm so grateful that my body has been fairly strong and that I can keep busy.  When I'm busy, my mind isn't able to go to those places that makes me scared.  It may not be the best tactic ever, but for the short term, I think it's just fine.

This week has given me a lot of opportunities for distraction.  First...Tuesday was the first day of the semester.  New students and lots of things to work out with kiddos and their schedules.  Wednesday was supposed to be my 2 MRI's, but they called me as we were driving to the hospital to tell us that the machine was broken down and that I would have to reschedule for next week.  It was truly a blessing in disguise.  My son-in-law was speaking that afternoon at a local elementary so I got to help with the grandbaby and made them a good lunch (there's a Hep A breakout in our city and we are a little afraid of eating out).  He did an awesome job and the students loved it.
 
Then the evening ended with me being able to snuggle with this cute like guy while he took a 2 hour nap.  We all hung out and caught up on the past episodes of the "Good Doctor".
 
Thursday, more school.  I actually worked an extra 3 hours.  I have an assignment that my sophomores do and then have them update that same assignment when I have them as Juniors.  To get out of work, my Juniors just say there is nothing to change on it just to get out of it, so I created a whole new look to the assignment so they think they are doing something different.  Yeah...a little conniving, but it's for the common good :) 

Friday, I got up early and went to the gym, then the temple, my nephews' basketball game, then out to dinner with our friends.  It was a little Ma and Pa restaurant in a town about 45 minutes away, so we weren't too nervous about the hepatitis outbreak there.  We had an awesome time.  I had to take a couple of power naps in between each thing but did just fine.  We ended up going to bed about 9:30 though.

This weekend?  I'm still deciding whether to go to boxing this morning, then have my painting lesson later this morning....probably should take down the rest of the Christmas decorations, and chilling.  Tomorrow's church and stake choir practice, then back to work on Monday. Plenty of things to keep my mind busy.

February 6th is my doc appointment....still a couple of weeks away.  I know I shouldn't worry, there's nothing that worry can do to change any outcome and there's a good possibility that everything may turn out to just be MS.  Yes, I'd be very happy if I was told that I just had MS.  I can do MS.  I feel like I'm kind of in the groove with it now and know how to better roll with the changes it brings each day.  I'm trying to up my water intake and continue to exercise.  That always helps everything.

Staying positive and trying not to think too much about the "what if's".  Trying to stay grounded in the present.  That's all we have. Right?

#gratefulfor
snow after a very dry winter
crisp clean sheets (my fav)
my husband
good friends