Graduation Day...

This past Friday, Dee graduated from the University of Utah.  This girl has put in a heck of a lot of work and sacrificed an immense amount of time to get this thing done.  It's not always easy to focus on something like this, especially when lots of your friends are working full time and seem to have more fun and more money than you.  Dee has had a pretty heavy workload with working 30 hours a week, (40 the last semester), and going to school full time, but she has endured pretty gracefully.  I have always told my kids that sometimes you have to make short term sacrifices for long term gain, and she nailed it.  I'm so proud of this girl and all she is doing.

We have had the best few days.  We decided this kind of accomplishment definitely deserved a big party for Dee to celebrate with her friends, so I took Thursday AND Friday off of work so that I had a full day to prepare, the day of the event to host and enjoy, and the weekend after to recover.  Planning ahead and breaking things out in to little chunks is literally the only way I can manage these kinds of occasions so thank heavens for to-do lists and a generous PTO policy at work! :)

Tuesday night I ordered about 80 prints off of Dee's Facebook and Instagram accounts to decorate the house with... I wanted to display fun pics that highlighted her hilariously amusing personality.  Wednesday after work I went by Hobby Lobby and a couple of other stores to get something for everyone to sign and to pick up decorations and paper goods.  That night I sat and mounted all the pictures on to black paper and added gold and red embellishments and then got some of the decorations up.

Thursday I did all the food shopping, the rest of the decoration shopping and took Dee out to buy a new dress.  (We may have brought home three, but don't tell her dad! ;)) Thursday night we finished up the house cleaning and decorating and started on some of the food preparation.  (Shout out to my hubby, my mum and Lois for all the assists.  I couldn't have done it without them!)

Friday arrived and everything went off without a hitch.  We left the house just before 10am and I picked up a fresh orchid lei on our way to the graduation.  It was easy to pick out Dee from the sea of graduates because of her sparkly blue frozen cap that her friend Shelby made her.  (It was SO cute and SO her.)  The ceremony was long lovely. ;)  I was surprised to see that some of her friends and her co-workers came out to see her graduate.  Pretty cool peeps in my book!  The weather was perfectly beautiful and we took loads of photos of course, then we grabbed some village baker to go for lunch and headed home to prepare for the party.

My mom did a couple of hundred meatballs for mini-subs and I ordered 200 wings from wingers, 100 bone-in and 100 boneless in sticky sauce and buffalo.  Best decision I ever made!  Not only were they extremely yummy, but they took a heck of a lot of work away from me. We also prepared fruit with caramel dip, veggie and cheese platters, hot seven layer dip and chips, spinach and artichoke dip with pull apart rolls, pigs in a blanket, pinwheels, caprese salad on skewers, and frothy pink punch.  It was just A.MAZ.ING.  I'm so grateful to my mum for all the food she took care of for me.  She is the most incredible woman and I am so blessed to have her support.  Even my pops was in the kitchen helping do food!  Mike ran all the errands, picking up the cake, the rolls and the wings last minute.  I just appreciate my whole family and them pitching in so much.

The party was a big success.  Most importantly, Dee had a wonderful time and her friends were sincerely lovely to be around.  There were lots of laughs and plenty of love.  It was pretty late by the time everyone left, so we did minimal clean up, just putting away any food we needed to and leaving the dishes for the morning so we could get to bed.

Saturday Mike and I cleaned the kitchen early and took down the decorations and then I finally caved to my exhaustion and literally spent the entire rest of the day and night in bed... napping, watching TV, napping, watching TV, napping...  you get the picture.  I probably slept more than half of the day, but I don't even care... it was completely worth it.

 Congratulations Dee!!! I'm so proud of you baby girl. :)

Here's a little glimpse in to her beautiful day:

Walk MS 2018...

Thanks to my adorable daughter, Dee, our family signed up for Walk MS: Salt Lake City this year, which happened to take place right in West Jordan at Veterans Memorial Park.  As our team captain she also recruited my hubby, Mike Jr, my mum and dad and Mike's mom, Lois to join us.  We all wore matching bright orange t-shirts, (that we made ourselves), with our team name, "Get off my nerves" plastered on the front. 

It was pretty moving to see how many groups of families and friends came out to support their loved ones.  Whereas at most walks or runs you wear a number on a bib, at this walk you wear a bib that says who you are walking for.  To say that it was emotional for me to watch my favorite peeps write my name on their bib and attach it to their shirts would be an understatement.  I felt very blessed.    

Walk MS isn't a long, exhausting walk.  You have to remember that families are walking with people in wheelchairs or with walkers, or with people like me whose legs often feel heavy like they're dragging tree trunks.  The entire walk was literally just a mile around the park, but it was honestly the most amazing mile I've ever walked.  To know that all these people were there just to support this cause that has recently become so important to our family was pretty overwhelming.

I am so grateful to all of the kind and generous people who donated to our team.  The money raised through this walk helps fund research and life-changing programs for people like me living with MS and it also helps provide a supportive community for us!  I honestly feel pretty lucky to be diagnosed with MS NOW rather than 10 years ago, because there are actually treatments available today where there weren't any before, and there is a real hope of finding a cure because of the wonderful people who support this kind of research.  This year the Salt Lake City walk alone has raised $109,376 so far and it's still climbing!  I just want to say, thank you. :)

What Made You Happy Today?

I saw this question on some website I was browsing this week and it made me stop and think.  One short, bad experience can ruin our mood for hours or days, but it works the same the other way around, doesn't it?  One GOOD experience can also RAISE our mood for hours or days if we let it.  I believe it's just all about our focus!

My mom told me that she once heard someone say:

"Are you really having a bad day?  Or did you just have five bad minutes and you're milking the hell out of it?"  

Funny, but so true, right?

After work today I decided to post this question on my instagram and facebook walls asking people to comment and tell me what made THEM happy today.  I wasn't sure that anyone would answer but I thought it would be fun to hear other peoples positive experiences if they would share... and you know what?  It WAS fun to hear and it put me in the best mood!  The answers varied from food and drinks to sleeping kids to outings in the beautiful weather to other people serving them to spending time with family, just to name a few... but reading every single response made me smile too. :)

Happiness, smiling, a positive attitude, whatever you want to call it... it's definitely contagious.  I sincerely love and appreciate good people who can put a smile on their face even in the face of adversity.  They inspire me.

What made you happy today? 

What would make me a better person?

This past Sunday was fast and testimony meeting at our church.  That means that anyone from the congregation can get up and share their testimony of the gospel of Jesus Christ. I always love hearing from the little kids on these Sundays but this particular week was just plain awesome.  This cute little girl named Brooklynn got up in front of the entire ward and the first thing out of her mouth was: "I would like you all to think about what would make you a better person."

Her words hit me hard... hard enough that I grabbed my iPad and noted them immediately so I wouldn't forget her challenge.  I've been reflecting on her question the past few days and while the intent is definitely not to beat myself up over every single one of my flaws and weaknesses, it has been a good exercise of self-reflection, especially following conference last week.

I do have a LONG, ever-growing list of things in my head that I know would make me a better person, but here are the three things I am going to specifically focus on for the next few weeks:

1. Serve others.  It can be hard to find the energy to serve other people when you can barely find the energy to get through your day sometimes, but I always notice that I'm happiest when I'm focusing on other people.  I want to be the person that my family and friends know they can always count on when they are in need of something, no matter what it is.  I have wonderful people in my life that serve me in so many different ways and I love and appreciate them so much.  I just want to pay it backwards and forwards.
2. Give people the benefit of the doubt.  I attended a workshop called "Crucial Conversations" at work a few months ago and the biggest thing I learned was that in any situation we have to be careful to differentiate between actual factual information and the "story" we create in our mind based on our assumptions and biases.  We did some exercises where we had to analyze situations and sort out the facts from the "story" and it was pretty eye opening.  In most of the cases that I was positive I understood what had happened, I was absolutely WRONG when they revealed the back story.  The facilitator in that class taught us how to ask questions to get more FACTS and how to base our judgments on fact only and not our own perceptions.  I need to practice this more and not jump to such negative conclusions about people.
3. Take care of myself physically, spiritually and emotionally.  This may seem like a selfish thing to work on, but it has very unselfish intentions.  You can't take care of anyone else if you aren't taking care of yourself and I want and NEED to be able to take care of the people around me that I love in the best ways possible.  

So there is my starting point.  Thank you Brooklynn for getting me refocused this week.  You made me want to be a better person.

Time out for fun...

Have I told you how wonderful it is to have my parents around the corner from us?  It's so much easier to spend time together when we are five minutes away instead of twenty-five.  This week they had tickets to Riverdance, so Mike & I got to tag along.  We always have the best time hanging out with them.  It's definitely one of our favorite things to do.

I have found that it works really well to save the majority of my work PTO for the days following "big" events.  That way I get to still enjoy some weeknight activities without having to pay for it the next day because I got to bed too late.  I've done this a few times already this year and it has literally helped change the quality of my life.  Thursday night was Riverdance, so I planned ahead to take off Friday and I got to enjoy a late night on Thursday with the fam and a long weekend after.  It was heaven!

Mike has never seen Riverdance, so I was extra excited that we got to go because I knew he would absolutely LOVE it.  I was right.  He could not contain himself in the seat and was bouncing around the entire show.  There was a couple a few rows behind us that actually came and asked us if he was a dancer during intermission and proceeded to tell us that they enjoyed watching him just as much as the performers.  I love that man and his enthusiasm for life.  Its contagious.  😍

I realized again tonight how much music affects me and how much it has the capability to lift my spirit and soothe my soul.  Thanks mum and dad for the most wonderful evening.  We are so blessed to have you so close. 💗

Spasticity woes...

I’ve been on steroids for a few days now and I haven’t really felt any relief of my current symptoms, which is a little discouraging, but I do know steroids can take a little bit of time to work, so I’m not giving up quite yet.  The side affects of the medicine have been manageable... I've just tried extra hard to put a smile on my face and not speak without thinking carefully first.  In fact, I have literally been making a point to ask myself... "Is it kind?  Is it necessary?" before I open my mouth and say something. (I have deliberately left out the "is it true" part of the analysis because the way I have been feeling, that would just get me in trouble.)

Tonight I wasn't in the best mood to start with, (yes, I'm totally blaming the steroids), but then I had one of those experiences that always freak me out a bit... the kind of experience where something feels different to how it's ever felt before.  I am accustomed to getting some pretty painful muscle cramps, (like charlie horses in my feet or calves for example.)  Mike told me they call it "spasticity" and that there are a variety of things that can aggravate it from a change in temperature, to tight clothing, to just moving the wrong way.  It's also apparently one of the more common symptoms of MS.  Who knew?  

Usually I can just flex it out or if that doesn't work Mike just massages it out for me no problem.  However, tonight I was laying in bed when one of those suckers hit my right foot and absolutely nothing that I did could relieve it.  I couldn’t flex or twist the pain out, I couldn’t stand on it at all, Mike got out of bed and tried to massage and stretch it out, but nothing was working.  It felt like a knife stabbing through my foot getting worse and worse and the fact that I couldn't do anything to stop it was causing me to panic big time.

Luckily I have a very educated hubby when it comes to stuff like this. 😍 (What a blessing that he decided to go back to school to study Physical Therapy!)  He remained totally calm even with me crying like a baby, ran a hot bath and had me sit on the side of the tub with my feet soaking in the hot water. Within a couple of minutes, the cramping had stopped completely and I finally had relief.  

Shout out to Mike for his quick thinking and for keeping his cool in the most kind, gentle, loving way while I was pretty much flipping out!  Seriously my love, I don't know what I would do without you. 💜

And the results are in...

I got a call from Dr Banks this morning with the MRI results.  I think it was good news!  Since my last MRI, which was almost a year ago, she said I only have one new lesion on my spine on the right side.  She also told me that none of the other previously existing lesions were enhancing.  Bear in mind that my last MRI was last April/May and I didn’t go on the disease modifying medication until mid July... So I am not sure, but I assume that the new lesion could have possibly presented itself before I even got on the meds?

Regardless, it was a relief to me to hear that there was only one new one.  I feel like that makes the past year somewhat successful.  So with this information the next question was how do we want to treat the symptoms I’m currently experiencing.  There is another medication I can go on to help with the tingling/numbness/sensation issues, but I decided I would try oral steroids first and see if they help at all.  

I absolutely hate steroids.  Oral are better than the IV ones for SURE, but I still hate how they make me feel.  I feel on edge and easily irritated, my heart races constantly and I sweat like crazy.  I get heartburn and don’t sleep particularly well.  I hate them!  But it's only 12 days and they could help, so I'm gonna give it a shot.  I honestly don't want to have to go on another full time medicine yet if I don't have to.  Let's hope the next 12 days fly by!  

MRI #3...

Today was my MRI.  I was in a terrible mood with the anticipation looming over me all day, but at least I can keep busy at work.  Shout out to the hubby for taking the time out of his work day to go with me.  I always offer to get someone else to drive me, (because I'm drugged up on Xanax), and he always declines and arranges to do it himself.  It is definitely a comfort to know he is there.

Truth:  I think the caregivers of people with MS have it just as bad if not worse than the people who actually have MS.  When we were at the MS Lifelines event last week one of the presenters asked us to raise our hands if we had MS, then proceeded to tell us that everyone in the room should raise their hand because if you care for someone with MS you "have it" too.  So grateful for my sweet hubby and his patience with me.

I made it through the MRI with no issues today.  If you are scared of MRI's like me, here is what I have learned makes it easier:

1. Wear very comfortable clothing... nothing restrictive.  Think PJ's or sweats.  (You can't wear anything with metal or any metal accessories.)
2. Ask your neurologist for two Xanax.  You can take one an hour before it's scheduled at your house and the other right before you walk back there at the hospital.  I love my neurologist for doing this for me.
3. Don't look at the machine when you walk in.  Just ignore it.  It's not there.
4. Ask for a cloth or something to cover your eyes.  Get that immediately, before they put in the IV, (if you are getting contrast), or place the piece around your neck.  The best thing about the cloth over your eyes is that even if you do open your eyes, all you see is bright light, so it gives you the sense that you are in a huge lighted space.  Just don't move and ruin the perception ;)
5. If they offer you a blanket, take it.  There is plenty of air flow so it's not warm in there and the blanket just provides an extra sense of security.
6. Make sure they give you a "panic button".  Just having that sucker in your hands makes you feel better.  Chances are you won't need it.  
7. Close your eyes and let yourself drift away.  If you want to pass the time, try and think of what songs would play along to the beats in your head.

My 40 minutes actually flew by today.  I'm grateful to the staff at Lone Peak who are always so kind.  A smile, even from a stranger, goes a long way to relieve my stress.  

Good days and bad days...

Well, the positive side of me is grateful that I have actually had a pretty good couple of months. However, the past week or so I have felt a little crappy.  I have been pretty tired, I've had that pesky zinging down my spine again and I've had increased discomfort/numbness in my left hand.  I've had a hard time getting to sleep and staying asleep at night due to body achiness, (especially my legs), and I've woken up with some numbness in my right hand during the night on a couple of different occasions.  I don't know if it is just the change in the weather or what!

I ended up caving and calling my neurologist Tuesday afternoon.  I don't like to call her unless I've been feeling pretty bad for a few days because first of all, I don't want to be a pain in the butt patient who calls for every little thing, but also, I am terrified to be put back on steroids or have to go have another MRI or who knows what else done.  They were able to give me a Friday morning appointment which was perfect because I had already arranged to take Thursday off for Dee's birthday celebrations and Friday off to recover. :)

My biggest priority this week was to get through Dee's birthday yesterday with as much energy as I could possibly muster and as little health interruption as possible. It's become tradition that I take the day off work so we can have lunch together and then shop at City Creek.  I realized a couple of weeks ago that this is the first year she is working full time so we probably wouldn't be able to go so I didn't say anything, but then bless her heart she went ahead and arranged to take it off.  (I'm not sure if the time together is more of a present for her or for me, haha.)  We had the funnest day!! I was up at 6:30am to decorate the house and run and get balloons before she woke up.  We had a yummy lunch and made sure to hit up our regulars, Alex and Ani for birthday jewelry and H&M for birthday clothes. After she was all shopped out we met Mike Sr & Mike Jr for her birthday dinner at Rodizio, and then had cake at the house with the grandparents.  I was absolutely exhausted by the end of the day but it was TOTALLY worth it.  So much fun.

This morning it was back to reality.  I went in to see Dr Banks nice and early at 8:45am.  I appreciate so much the time she takes with me to really listen and find out what is going on.  I never feel rushed, she asks so many good questions and then gives me choices as to what our next steps can be.  She did say she wanted to do another MRI to see if there have been any changes so that is set up for Monday after work.  After our discussion and when given the choice, I elected to wait until after we got those results before starting any kind of medications.

I will admit that I do feel super anxious about the MRI, but I keep reminding myself that I have made it through two of them in the past and Dr. Banks gave me a prescription for a couple of Xanex to take right before going in.  At least it will be all over with in a few days and I should have some results back by the end of next week.  Waiting and the anticipation is definitely always the worst part.  Here's to hoping it's just the weather changes giving me grief. :)

Happy Birthday Sweet Dee...

Dee's original due date was the beginning of March.  Just like her brother she blessed me with carrying her for two extra weeks, so she was a good size baby weighing in at 9lbs, 2oz.  Although we lived in Silver Spring, Maryland where there was a major hospital just a couple of miles away, our insurance would only cover delivery at Shady Grove Hospital which was 20 miles away.  They scheduled us early in the morning to get induced, so we got to sit in DC metropolitan area rush hour traffic for well over an hour.  Good thing I wasn't in labor or she may have been born on the freeway! :)

Back in those days, (boy do I feel old for saying that), insurance only covered one night in the hospital, so I delivered just after 2pm on March 22nd and they were already preparing to discharge us well before noon on the morning of the 23rd.  I was absolutely terrified.  I was 21 years old, had gotten no sleep all night as they were so over full that I had been placed in a room in the pediatrics ward, and I had this new baby that was literally coughing up blood an hour before they kicked us out of the hospital.  However, despite all that, I remember sitting with her in the back seat on the way home and just feeling a sense of immense happiness.  I knew immediately that she was going to be a big blessing in our lives.

Dee had pretty bad colic for the first six months of her life so Mike and I took turns rocking her in the rocking chair for 1-2 hour increments while the other slept for a bit every night.  Honestly, it was a miracle we ever had another child after her.  She cried ALL.THE.TIME. but luckily, since she was our first, we didn't know any better and pretty much just thought that was normal.  (Thank goodness for lots of family love and support.)

If you don't know Dee, I sincerely feel sorry for you.  To know her is to know that your life is better because she is in it.  She has the most genuinely beautiful spirit and brings so much fun and laughter to those around her.  I've honestly never met anyone with so much compassion in their heart.  She's always doing things for others whether it's taking them out to get a Swig because they had a bad day, dropping them off treats, or making sure they have someone to sit with so they don't feel alone.  She is also one of the most forgiving people I know... almost to a fault.  (I've definitely wanted to punch a few of her less admirable acquaintances in the face on more than one occasion, but she is a MUCH better person than I am.)  She has a heart full of Christlike love.

Dee graduates in just a few weeks from the U of U and I couldn't be prouder of her.  She has made a lot of sacrifices the past few years working and going to school full time while trying to juggle her church assignments and social life.  She is a constant example to me of enduring trials with grace.  She is the kind of person who pushes through her toughest times by serving others with a smile on her face even when she is fighting battles that no-one knows about.  I love and admire her so much.  She makes me want to be a better person.

Happy Birthday sweet Dee.  I'm so blessed to have you in my life and I truly love you to pieces.

Getting to know MS & my immune system better...

We had the most amazing opportunity to attend another MS event put on by MS Lifelines tonight at the Cheesecake Factory in Downtown SLC.  They flew in Dr. Daniel S. Bandari who has been recognized as one of the top neurologists in the nation specializing in multiple sclerosis.  He is the Medical Director and Founder of the Multiple Sclerosis Center of California & Research Group located in Newport Beach, California.  He is also a Clinical Assistant Professor of Neurology and Neuro-immunology.  (You can read more about him here if you are interested:  MS Center of California.)

What a fantastic opportunity to be more deeply educated on the immune system and it's impact on MS.  We learned about what MS is and how the immune system protects our bodies and plays a distinct role in the development of MS.  We learned about different treatments and how they modify the immune system to limit the progression of disability in patients with relapsing MS.  We also learned about things we can embrace to live our best life possible while battling MS and some of the things to avoid.  It was incredibly enlightening.

No two cases of MS are alike, but there are some general things that Dr. Bandari has found help the majority of people with relapsing MS.  Mike took good notes:

• Diet:  Low fat, low carb, low sodium, high protein.
• Vitamins:  Take a multivitamin, vitamin D3, B-complex, and your omegas daily.
• DON'T take any extra immune system building vitamins like vitamin C.  These are bad for MS.  
• Exercise:  He said if you do everything else and don't exercise you may as well have done nothing.

I was deeply encouraged by Dr. Bandari's advice.  We have been trying to eat low fat, low carb, and high protein during the week since the beginning of the year.  I drink a protein shake for breakfast, have fruits and veggies for a snack, a healthy choice meal for lunch, another protein shake on the way home and then a sensible dinner.  I have told Mike over and over that I feel wonderful when we eat that way and I get through a pretty strenuous work week with few issues.  The interesting thing is that we allow ourselves "treats" over the weekend, and I never feel quite so great on the weekends!  Granted, some of that is because I'm exhausted from the week, but I do think what I eat has a direct bearing on my feeling of well-being.

I already take a multivitamin with D3 & B-complex as well as flax seed daily and know that the days I accidentally miss those I have a lot less energy.  I didn't know that I should stay away from taking extra immune system building vitamins outside of my multivitamin so I will definitely keep that in mind going forward.

Exercise has become a habitual part of my day since the beginning of the year, (riding my recumbent bike), and I have genuinely started to love it.  I did 11 miles in just over 40 minutes the other day, which was a record for me, and I feel so much stronger!  I feel so good when I exercise, and it improves my mood substantially.  Listening to Dr. Bandari talk about all these things encouraged me to keep pressing forward.

One of the benefits of going to these programs is also to meet other people with MS.  I still struggle with being social at these events, so I always pick a table where there is no-one else sitting when we first get there.  Tonight we happened to pick the table that the MS Lifelines Ambassador, Dr. Bandari and one of the program organizers sat at.  

When the program was over and we were eating dinner, the MS Lifelines Ambassador, Ted K., started talking to Mike and I.  He has had MS for over 20 years and goes to events like these to tell his story and give encouragement to people living with relapsing MS.  He was such a sweet man and very personable.  He took a genuine interest in our story and our struggles.  He sat and talked to us for over 30 minutes and gave us some wonderful advice... the biggest piece being to put the shot under one of our arms for a few minutes before I get it.  He said bringing it to body temperature helped it not sting quite so much.  The shots have been pretty painful for me, so I was eager to try this.  I happened to have one scheduled for this evening, and lo and behold, after Mike warmed it up under his arm for a couple of minutes, I barely felt it!  We will try this again on Friday for SURE!

Ted was a hoot.  He spoke right before Dr. Bandari and told us that his best piece of medical advice, (as he is not a Dr.), was to never take a sleeping pill and a laxative at the same time. 😂😂😂 I was so grateful for this compassionate man who took the time to talk to us and empathize and share with us.  One of the blessings of MS has been the truly wonderful people I have had the opportunity to meet.  I only hope one day I can be such a blessing to others.

Dr. Bandari gave us a few websites that he recommended we get our information from.  He reminded us that there is lots of bad information out there on the web, but these websites are reputable:

NMSS – http://www.nationalmssociety.org
MSAA (Multiple Sclerosis Association of America) – http://www.mymsaa.org
MSF (Multiple Sclerosis Foundation) – http://www.msfocus.org
CMSC – http://www.mscare.org

Thanks MS Lifelines for another amazing evening. :)