Thursday, August 17, 2017

Take off the mask

Yesterday was my first official day back at work.  The summer seemed so short, but that is nothing new.  Summers always fly by leaving not enough time to do all the things we have planned.  I deep cleaned a few closets, got some golfing in, and went on some short trips.  Refinishing that dresser and cleaning out the garage are going to have to wait.

Well, this morning I got my sorry butt out of bed an hour earlier than in recent weeks.   Today was  our first faculty meeting of the year.  It's always great to see everyone.  I feel like they are my second family.  My principal is not big on long meetings (Oh darn :).  He uses them to go over the basics and to share a motivational talk to kick off the year.

This years talk was based on one of my favorite movies, The Princess Bride.  He showed us a clip where Buttercup is angry at the masked Westley, thinking he is someone else.  When his mask falls off while rolling down a mountain, she sees who is truly is.  Just a moment before he falls, she is irate with him and is resistant to anything he says or does.  Once he loses the mask and she sees his true identity, she will do anything to follow after him.  Hence, rolling down a steep hill after him.
Our principal then challenged us to do 2 things.  1:  look past the mask that our students may be wearing.  Sometimes it's severe anxiety or depression behind a smile.  Sometimes it's anger stemming from difficult situations at home etc. When we look past the mask, leave our judgements behind, we can learn to love those we are working with and are better equipped to help them. 2:  He challenged us to take our masks off.  Be human.  Be real.  When the students see us more for "real" people, they can connect better with us.

As he spoke, I thought about my previous post on accepting disability.  I know that I am in the middle of accepting a disability at the same time that I am helping my students do the same.  I wondered how that should play into "taking the mask off" while maintaining that delicate line of being professional.  I know I don't have to worry about it right now.  As the year unfolds, I know that the Lord will guide me to know when, or if, my personal journey can help others.

For now, I have the mask on, only taking it off for those closest to me and that's okay.

Back to work.  It's quite an adjustment on my body.  I've been working part time for a few days before yesterday.  I come home so exhausted, but I'm trying to figure out how to keep the exercise on the forefront of my priorities.  I skipped a day of exercise and felt so good the next day.  This morning however I went to the gym before work (I'm only contracted for a 1/2 day, so could come in later).  It's only 9 am and I'm ready for bed.  I'm sure my body will adjust.  It just takes time.

Seeing that this post is entitled "take off the mask".  I end by sharing a quote from a guest judge on America's got Talent.  He said, after hearing a touching vocal solo, "There is strength in vulnerability".  I've been thinking a lot about those words.  I guess it could mean so many different things.  For me it could mean two things.  
one:  By being vulnerable, you gain strength.  Two: when you are vulnerable (which takes strength), you can strengthen another.  

His solo was from the heart.  It was moving and his spirit touched the soul.  He could have only done that by reaching into his soul and being vulnerable.  I guess I'm rambling, but words to ponder on.

Tuesday, August 15, 2017

Ostrich life is over - online MS resources

For the past 10 months I have pretty much lived my life like an ostrich.....head in sand.  It has served me well while my brain catches up and accepts the reality of my diagnosis.  I still haven't really researched the disability in depth.  I know that basics, but am learning a little more every day.  For months I didn't talk to hardly anyone about it, keeping it a secret.  I flat out...didn't want to know.  I didn't want to "borrow trouble".  I knew I was able to cope with "what was" for me at that time, and didn't want to know things about the potential future that might worry me.

As Richard Cohen states in his book "Blindsided", denial isn't all bad.  It serves a purpose during times of adjustment to hard things.  It kind of protects us while we figure out the new state we are in.  I agree with him and truly believe it is not a bad thing as long as you don't stay in it forever or if it keeps you from getting treatment.

I started pulling my head out of the sand little by little back in April.  I thought, "There have to be websites that focus on the things I CAN do with MS".  I wanted to find ones that were positive and weren't filled with doom and gloom.  It was then I found the ActiveMSers site. I love this site.  It has helped me see all the things people are doing physically with their MS, and gave me motivation to try new things.  It has been a great help to me.  I have learned to be more accepting of what is happening to my body by reading the inspirational stories of others.  Life didn't seem so scary as I read how others were fighting the battle and winning.  Their MS may not have been getting better, but they were learning to live fulfilling lives despite their MS.  They were still having adventures and doing new and exciting things.  It is fun to read about all the positive things people are doing.

I also started reading a few books.  The first one that I read was Ann Romney's book, "In this together". In her book, she candidly shares her journey. I read this book shortly after being diagnosed.  I have to admit, it was very difficult to read at first.  My emotions were raw at the time.  I had to stop of few times and regroup before continuing.   At times her story mimicked my life and it was very difficult to hear. It hit pretty close to home.   That being said, it validated my journey, and made me take a long hard look at my life.  It was an easy read.  I didn't feel like I gained a lot of answers to things, but it was very validating and came at an important time in my life.  I recommend it to those newly diagnosed.  Now that I am in a new stage in the acceptance process, I may read it again to see if I can glean more from it.

My acquaintance with the ActiveMSers site put other organizations and bloggers to my life.  I slowly started following different groups on Twitter.  I have recently started paying attention to some of the research that is coming out and have implemented some of the recommendations into my own life (such as HIIT training, resistance training, biotin, etc).  Some of the groups/people I follow are: @MSHealthCentral,, @MS_Focus, @DanJenDig ‏, @ActiveMSer, @MS_Bloggers @CanDoMS ‏, @TheGirlWithMS , and a few more.  They have all slowly helped be become more accepting of things that are happening with my body, and have also taught me things I can do to make my life more fulfilling.

Just this last week I finished the book, "Unabridged" by Richard Cohen.  It is not a prescription of how to deal with MS, but a very candid view of his long battle with the disease.  Richard is further along in the acceptance process, seeing that he has had this disease for decades.  It is a  very interesting story of his life in the news world and with his wife Meredith Vieira (from TV show - The View). The book has helped me identify and understand the stages of acceptance that I have previously gone through and ones that I am still going through.   Richard gives respect for each stage of acceptance.    My husband listened to the book also.  I think it was helpful for him to learn more about the disease from another person's  perspective.

I also read a book called MS-Living Symptom Free.  I read it early on after my diagnosis.  Due to my "head in the sand" mentality at the time, it didn't help me as much as other books.  I plan to read it again with "new eyes".  If I remember right, it was more of a "how to" book, and I wasn't ready for that information at the time I read it.  I know it talked quite a bit about different treatment options.  When I read it, I didn't even really know what MS was. Poor timing on my part.

In my short time with this diagnosis, I am still learning that every day is an adventure.  Each day I'm able to open my eyes a little wider to learn about things that I should know.  I've learned that I need to learn things at my own pace.  I know some people that research, research, research, when they learn about a new diagnosis.  That is not me, and that's okay.  We all do things in different ways.  I am super grateful for those out there who are doing research, and are sharing their stories.  They help improve my life and make me grow.  How did people do it without the internet and information so readily available?  We are truly blessed to live in this time and age!

Monday, August 14, 2017

Revolving door of acceptance

Does total acceptance ever happen?  I'm too new to this to really know.  I've only had my diagnosis for about 10 months although I'm pretty sure I've had the disease for about 20 years. Now it's just more severe.  Some days I think I've totally accepted my new body, then something happens to make me think otherwise.

We had a wonderful trip to Colorado, rafting, meeting new family, Broncos training camp, and visiting my grandbaby.  By the end of the week I found myself with less and less mobility and was becoming more tired.  I still kept up with everyone, but today my body would not allow me to push it too far.  We arrived home last night.  Today I was able to go to the gym, had a foot zone, and then had a painting lesson.  

Shortly into the painting lesson I started to have a small panic attack and did all I could to fight back any tears.  Nothing big was happening, but it was my body telling me that enough is enough.  I cut my lesson short and went in and took a nap. My teacher totally understood.  I drove my daughter to the dentist later that day and needed to rest up to be able to help out.

I'm learning now that my mental health is directly connected to how my MS is doing.  I pushed too hard, now it's pushing back.  The good thing about this knowledge is that I've learned the opposite is also true....Body acting up, take good care of it, mental health is better.  When I'm in "that place", I just have to remind myself that it isn't permanent and that all I have to do is rest a little more, eat a little better, and things will brighten up.

Well, I got a little off track :)  

Back to acceptance.  Tonight I sat down for dinner, the mail sitting on the table.  I picked up a magazine, not knowing what it was.

It was a magazine for disabled sports.  I had no idea why it is coming to me.  I didn't order it as far as I know, but there it was.....DISABLED sports.  I was full of a mixture of emotions.  First I was excited by reading all the exciting things people were doing to keep their bodies strong and how they were enjoying the world around them.  As quick as I had those feelings, the word Disabled shot right into my heart.  Is that me?  I knew it was, but it felt so heavy.  It shouldn't.  I teach students every day about their disability and how to not be ashamed of it, how to accept it, and how to self-advocate. 

 Now the tables are turned, it's me that needs to learn those same skills.  Although I've had to self-advocate for accommodation for ADHD in college, this felt very different.  To me, ADHD, although annoying at times, can be very empowering.  It is accompanied with great creativity and energy to take the world by storm.  MS, feels like the opposite.  MS is taking away mobility, energy, vision, and the ability to enjoy things that create the body to get hot.

I thought I had already been through this process called "acceptance".  Now it is here staring me in the face AGAIN.  Since MS is always changing, bringing new challenges, is there ever a time where one can totally accept what is happening?  I guess only time will tell.  I want to live in that place.  A place of total acceptance.  Maybe that is the lesson that I'm supposed to learn.  Living life in faith.  Faith knowing that someone greater than me is in charge and that He will support me no matter what life/MS throws at me.

It's a big lesson to master, I guess everyone has to learn it.  Maybe not with MS, but with everyday life.  We all have challenges.  Mine are no bigger than anyone else.  I am so grateful for those around me who strengthen and encourage me each day.  The biggest one is my sweet husband.  I am blessed beyond measure.

Saturday, August 12, 2017

Thank you Ancestry DNA

The day finally arrived.  My daughter headed for the airport her first solo airplane ride.  She was a little nervous about the adventure, but did just fine.  I was running a little late, but that gave her extra time to find her way to the pick up point.

We decided to get lunch on the outskirts of Denver.  Traffic downtown is a beast and we would do anything to avoid it.  While we were eating, I got the call from my doc.  I had called the office earlier to see if I could get the results in the morning before my daughter arrived.  I didn't want to be with her if the news was bad.  I didn't want anything to spoil her special day. I wanted a little time process the results and regroup if the news wasn't positive. I stepped out of the restaurant and talked with the medical assistant.  As I mentioned in my last post, things are looking better.  Labs are headed in the right direction and there is no sign of a liver autoimmune.  It was definitely a day to celebrate!  I came back and told my daughter.  I was so grateful.  Nothing would be looming over me that day while she met her birth family for the first time.

We headed back to the hotel, she rested a bit, and then she got ready for the special night.  Traffic was slow, so we were a little late, but they were totally fine with it.

 The anticipation was great.  We walked up to the door and her aunt answered.  Tears were shed and there were lots of hugs.  Quickly, more family poured out of the door, her sister, and cousins.  More hugs and tears.

  As we entered the house, my daughter was greeted by her grandparents.  The love they all had for her was tangible.  Her grandmother kept saying, "I've been looking for you all of your life."  It was so sweet.  Her grandpa had a huge smile and a great big bear hug.  There was no lack of love in that home.

The resemblance between her and her aunt was uncanny.  Her aunt's husband had to take a double take when he first saw them together, as did the rest of us.
We sat and visited on the couch.  We presented a book to her grandmother full of pictures from her childhood.  We wanted to somehow share memories of times when they were not yet in her life.  They shared pictures of her family with us, and we had fun looking at all the similarities.  Of course, there was a lot of making of fun of those puffy 90's bangs that both she and her sister had to endure.

It wasn't long before we were all up getting photos to capture this beautiful day.  Posed, selfies, lots of remembrances taken to capture this special moment.

We broke for dinner and then continued getting to know each other for the next few hours around the dinner table (and the guys around the first football game of the season).

I don't  know what it is, but there is something healing about finding family.  Learning of the history.  Seeing common physical characteristics.  Understanding medical history.  Finding common passions and interests.  I think it makes one complete.

This isn't our first experience finding birth families.  Each time is unique and special.  There are no words to describe how it feels.  She now has more family to love.  It is a precious thing.

How did this all come about?  Ancestry DNA.  It was a present to all of our adopted children for Christmas.  They were all interested in their ethnic origins.  My daughter was the only one who didn't know anything about her birth family.  She was the oldest and the records were tightly closed at the time of her adoption.  It was much harder to find her birth family than my others.  I think it was God's will  that it happened now though.  The timing was perfect.

Seeing that I was the keeper of the DNA results in my Ancestry account, all contact came to me.  The first contact I received was from a woman who was listed as a "first cousin".  I couldn't see the connection between her and myself on my tree, so I discounted it.  About 2 months later I realized that she wasn't trying to connect to me, but to my daughter.  I asked my daughter if I could contact her.  She was nervous, but said that it was okay as long as I didn't share our names.

I contacted the woman.  She was 65 years old. my daughter 27.  How could they be first cousins?  We tried to figure it out over the phone, but with no luck.  Finally I said, "My daughter is adopted.  Her birth mom is 45 and was also adopted".  The phone was silent for a minute.  The woman on the other end said, "I placed a baby for adoption and she is about 45"..........I was talking with my daughter's grandmother.

As we talked, she shared how she had recently found her birth daughter and we shared history of the past 27 years.  Her grandmother was delightful and had the same quick sense of humor as my daughter.  They both loved things like Halloween, Dracula, and mysteries.  The interaction led to my daughter  and her grandmother becoming friends through social media.  I know our visit this week has made my daughter even more excited to meet this special woman in the future.

A couple of weeks after finding her maternal grandmother, my daughter expressed an interest in finding her birth father's side.  Being the genealogy sleuth that I am :), I was excited for the challenge.  I knew that her birthfather's side was Spanish.  It was very easy to decipher which "DNA matches" were from her father and mother's side due to their last names.

I contacted 5 or 6 of her closest matches with Spanish last names and shared what we knew.  One sweet man by the last name of Martinez was very interested in helping us.  He contacted family members and did all he could to solve the mystery.  It was to no avail.  Nothing...nada.

He later told me about a family Facebook page.  There were hundreds of cousins who belonged to this site.   I gave him permission to post our story.  SEVEN MINUTES LATER....there was a post...."Is her birthday  11/.../...?"

It was way past my bedtime when that post was made, so my new Martinez friend could not call me.  I was told that the wait before he could call me was torturous.   It was later the next day, while at work, I received the call.  He asked me when my daughter was born and verified....We Had A Match!!!!

Her aunt was the one that had responded to the FB post.  She had been looking my daughter all of her life.  Her aunt was 15 years old when my daughter was born.

Long story daughter found out she had half sisters (at that time) and started making connections through social media and texting, even meeting one of them that lives close to us.

Finding family can be such a huge blessing in one's life.  It doesn't always work out.  Sometimes family doesn't know that other family even existed, or family members may not be in a good place in their lives to embrace new people.  Each situation is unique.  For us, we have just prayed that when it was the right time, things would fall in place.  The Lord has been good to us and we have always been given inspiration on how to proceed and when to hold back.  

Birth families are the best.  How grateful we are to not only have these beautiful children, but now have countless of aunts, uncles, and grandparents to be a part of our lives.  Adoption is a wonderful blessing.

Thursday, August 10, 2017

Happy Day!!

I thought I'd post seeing that we were just sitting here killing a couple of hours until we have to leave again.

Great news today....the doc called and said that my MRI looked good and that my labs are starting to look better.  Diagnosis??  They are contributing my bad labs to Gilenya which I discontinued the beginning of the summer.  I'm not bad mouthing Gilyena though.  It helped me a lot with my MS.  My labs
are starting to turn around and NO liver autoimmune!  Words cannot explain how good that is to hear.  K...that GIF is a little annoying :)

He is in the details - anticipated reunion

Yesterday I did the MS two-step.  It told me I needed to slow down.  I did.  I spent half the morning in the hotel in my PJ's "just chillin".  I later met my husband for lunch, then instead of walking, took a Lyft to the art museum.  For the first time ever, I was at a place where I would have accepted being pushed in a wheelchair. My legs would hardly carry me to the different floors. My mind went to what it would be like to be in a wheelchair.  It definitely would have been a very different experience.  I wouldn't have the freedom to move at my own pace between pieces that I liked.  I would have to relinquish that to the person pushing me.  On the upside, it was good to know that I could still enjoy those things, even with limited mobility.

The museum was full of many beautiful and inspirational pieces.  Seeing the different techniques and styles gave me motivation to continue on my journey with oils.  It gave me hope that someday I might be able to do something that could bring joy to me or someone else.   I was in awe at the detail achieved with oil paint.

Later I met my husband for dinner, not knowing if I could walk to the restaurant, so I rested for a few minutes.  It was the weirdest thing, but we probably walked close to 2 miles and I was just fine.  I never know what to expect with these new MS legs.  We had a nice evening eating some fun new foods at a local Indian restaurant.  We are hard core foodies and have a few extra pounds to prove it! :)

I woke up today with great anticipation.  It has been a day that I have been looking for for over a year.  My daughter is flying in to join us and she is going to meet her birth family for the first time.  It's crazy to think the day is finally here.

As I lay in bed, I reached for my phone.  It seems that my kids always text me in the night about one thing or another, so I always check it when I first wake up.  Nothing....but I ended up looking at other alerts that brought me to news articles about our sweet neighbor who passed, reminders that the doctor is going to call with my results this afternoon about my liver, and responsibilities at work upon my return.  Anxiety started to build...."WAIT!!! This is to be a day of joy and reunion."  I didn't want the anxiety monster to rule on this special day.

I hadn't planned on blogging today, but I thought that it might bring things out into the forefront of my brain so that I could see things as they really are.

 Writing me has reminded me that He is in the details of my life.  As in the broom painted below (if you click on it, it will become bigger and you can see the detail), He knows every strand, every fleck of light, and every shadow of my life.  If I have faith, and trust in Him, everything will be fine.  I need not have anxiety about the doctors call, those that are mourning, my responsibilities at work. I am not able to do anything about them right now.  I only have now.  When those times actually do come, I can do something about them.  He will be in the details and will help me do whatever needs to be done.

So for now??......get out of bed, get that body working at the gym, and enjoy this wonderful day of reunion.  I can hardly wait.

Tuesday, August 8, 2017

Bragging rights!! Keep Moving

This is probably kind of stupid to blog about.....but I have bragging rights.

Yesterday we went white water rafting all day.  Great experience.  Well, as we went to bed, my husband could hardly move due to being sore and tired from the day (sorry hunny for calling you out...but...).  As for me....NADA.  The other people on our boat were also complaining of soreness.

I thought for sure that this morning I might be feeling it a bit.  The alarm went off, got out of bed,....still nothing was sore other than my fingers from gripping the oar the day before. Yeh!!

I know it seems small, but what it says to me is that even with MS, I'm in pretty good shape.  My muscles were used to moving...even if at a snails pace :) Okay, did I have to be helped in and out of the boat and transport vehicles?....yes.  Could I help carry the boats ashore?, but that doesn't matter.....for me it was a good reminder that even my small effort at the gym is making a difference.   My body isn't super strong, but it wasn't foreign for it to be moving.  More motivation to keep moving! Find something you love....just keep moving.

I had to share a pic of something awesome that I hadn't seen at a hotel before.  It allows people with disabilities to access the pool and hot tub.  It was at a Hampton.  Thumbs up for the chain!  That's awesome!