Missing the boy...

It's been a long couple of weeks.  Mikey has been gone on tour with one of his bands.  They don't make a ton of money... usually just enough to get them to their next destination, but he absolutely loves it.  This is the longest one he has ever been on, (two weeks), and I miss him.  His dad misses him too.  In fact, he is always a little depressed when one of the kids are gone... tonight we went out to sit on the swing on the front porch and within minutes he was down checking on Mikey's car to make sure it started for when he comes home.  (It didn't... it needs a new battery.)  I do find his deep love for his kids to be extremely endearing, but I have no idea what he is going to do when they finally move out, ha!

Mikey will be home in a couple of days, so all will be back to normal in the Collins' home.  Meanwhile, I've enjoyed getting pics from all the different states he has been visiting.  He even got to spend the night at his Aunt Jenna's house in Texas.  They were so good to him and the band... put them up in their home and fed them... even went to his show!  Mikey just loved getting to visit with them and I was grateful to know he was being taken good care of for a night.

On another note, while we were out on the porch tonight, enjoying the AMAZING weather, I couldn't help but admire the little rose tree Mike planted for me last summer which has more than tripled in size... it's insane.  It was so heavy that we had to tie it down to the ground on one side to hold it up.  I need to trim the left side, because it is thicker and heavier than the right, but I can't trim it while there are so many buds... I just can't.  Here is a pic from a week ago:

And here was my view from the porch tonight!!!  

How crazy is that!?!?!?  It will bloom like this a few times over the summer.  (As soon as this set of buds fall off, I'll trim that left side.)  Yay for beautiful things and a hubby who fills my world with them... I always think of him when I hear the lyrics in the song "A Million Dreams" that say:

The special things I compile,

Each one there to make you smile...

(A Million Dreams, The Greatest Showman)

That is so him.  He just fills my life with beauty.  I'm a lucky girl. :)

When Tuesday feels like Monday...

Well, today has been a day.  It didn't start well because I had some issues through the night so I got a grand total of 3 hours sleep.  The alarm went off just after 5am.  I can't tell you how many days I just want to roll over and go back to sleep, but I made the decision just under a year ago that I would get up every day and do my best, no matter how I was feeling.  When you make a deliberate decision like that once, it stops you from having to make it every single day.

This weekend wasn't the best.  Our big freezer in the garage broke and we lost most of the food in it other than a pile of steaks that had somehow managed to stay partially frozen and very cold, probably because there were several packs piled on top of each other.  We were able to keep those in the refrigerator and grill them last night so we could slice it and refreeze it to use in burritos as needed.  Everything else was toast.

It always pinches my heart to see that amount of food wasted, but as we tossed everything, I remembered back to another time that we lost an entire freezer worth of food when the kids were very little and money was quite tight.  The door had been left open and we didn't find it for three days... I remember gagging and sobbing at the same time as I piled all the spoiled meat in to bags to throw away.  I always bought meat when it was super cheap and we had it stocked piled, so it was a LOT... and throwing all that away was a huge blow to our budget.  I also remember my sweet parents who brought us over two checks that night, (one from each of them), for us to go out and replace all the lost food.  It still tugs at my heart and makes me tear up to think of their compassion and love for us.  There were so many times that they did things like that for us back then... heck, they still do!

This time I admit I breathed a little easier, knowing that even though it was still a terrible waste, we are blessed to be in a much better financial situation than we were back then, and we will be ok.

Yesterday was memorial day but Mike had to work, so it didn't feel like a holiday.  I did get to have sushi lunch with Dee and then we had mum and dad over to help eat some of the grilled steak with baked potatoes and salad. We spent the evening playing Five Crowns and had a good laugh together.

Still, after the long holiday weekend and no sleep last night, work was tough today.  I was tired and grumpy and one of my teams accidentally missed an assignment, which NEVER happens.  I wasn't angry... they got it completed within a couple of hours and I know they have been completely slammed the past couple of months, but I still felt crappy about it.  I don't like to miss ANYTHING!  However, I have created a couple of new reports that will help us track better going forward and am confident we will be able to stay on top of the workload.  They really are an amazing team.

The rest of the day didn't go much better, so while I have been trying to take a hiatus from Diet Coke for the past couple of months, I gave in when one of my awesome team members dropped a can on my desk.  They are so good to me and know me so well.  This was literally the only way I got through today.  Diet coke with sugar free raspberry and coconut syrups over pebble ice.  Heaven!

Tonight I'm hitting the sack early and tomorrow is a brand new day.  I've already made that decision to get up in the morning, so here's to a better day... and just think, it's hump day already.  Bring on the weekend! :)

Real Life...

I am pretty proud of the fact that I work full time in the office 5 days a week.  I have a good job with amazing benefits and I manage about 30 wonderful people that I love working with and who make my job quite enjoyable most days.  I'm blessed that I can work an earlier shift so I get up fairly early, (5am), but I am able to leave the office most days by 3pm.  I always tell people close to me that work gets the best hours of my day and they definitely do!  I do reasonably well with energy levels in the mornings, but come 3:30, I'm pretty much toast.  Real life confession:  This is me most days when I get home from work for about 30 mins... no filters, just real life, washed out, pasty tiredness.  :)

Yes, I suffer from somewhat awful fatigue, (see the meme at the top of this post for a rather accurate description of what MS fatigue consists of.)  I'm not talking about the kind of tiredness that you feel after a late night... this is an almost inexplicable exhaustion that makes you wonder if you can function for even a minute more when it hits, but I am doing all I can to manage it and I think I do a decent job.  (Most people have no idea I even struggle with this, so I call that a success!)  I take prescription medications specifically for this symptom twice a day on top of vitamins to keep me going and I know that once I'm home I'll function much better for the rest of the night if I just take 30 minutes to rest.  Then I'm up and making dinner and enjoying the evening with my fam. :)

The point of all this is that MS doesn't have to stop you from living life.  You just have to figure out what works for you. Right now, this is what is working for me!  If you suffer from MS fatigue, talk to your doctor and ask what medications are available for you.  I take Amantadine twice a day, (the one that made me sick the very first time I took it, but that I gave a second chance), and it has been a game changer!  (Before that I was falling asleep at 7pm every night.  Now I'm up till 10pm most nights again.)

I'm so grateful for all the modern day medication that is available to help me deal with this.  I refuse to give up.

The real MVP...

Well, I have definitely not missed the hot weather.  The past couple of weeks we have had quite a few of days that have hit in the low eighties and with the return of the heat comes the return of my spine zinging and my sheer exhaustion.  Why oh why can’t we have more spring and fall here in Utah?

After a beautiful weekend, the temperatures are climbing up again.  One of the worst things for me is leaving the office daily and having to get in to my scorching car.  It can take my body hours to recover from even just a few minutes of that kind of heat exposure. 

In February my amazing hubby bought me a new car… a Hyundai Santa Fe Sport.  

We call it the “MS Model” because he made sure it had lots of features that would help me personally with different MS symptoms.  The BIGGEST feature being that I can start that sucker from my phone in my office, tell it what temperature I want it to register inside, and by the time I get down the stairs and out to my car, it is a cool 67 degrees in there.  

This may not sound like a huge deal to any of you, but oh my goodness what a difference it makes to my afternoon!

I will admit I fought him on purchasing another car, but I have been SO grateful to have that this past couple of months.  I can’t imagine how much more wonderful it will be when the weather is in the high 90’s. 

Thanks sweetie!  You are seriously the real MVP! :)

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!