Merry Christmas!

Well all in all, Christmas was a big success this year.  We spent Christmas Eve at our house playing games with Mum and Dad, Lois and the kids.  For the first year ever, I bought our family matching PJ's so we could do corny pictures together.  We did Christmas Day at Mum & Dads with the Santizo's and Lois and we had the most amazing feast.  Family, food, fun.  Life doesn't get any better.  This whole season was about prioritizing the most important things for the family and keeping it as simple as possible so that I could enjoy my time with them.  In the end, it turned out to be one of my favorite Christmases ever.  Merry Christmas from the Collins Fam! :)

A moment of despair...

Last night was a bit of a tough night for me.  I don't think that my life is terrible... I know there are people that have it a thousand time worse than me, but I think it's important to share some of these feelings sometimes so that if there is someone else struggling that happens to come across this blog that feels the same way, they know they are not alone.

This week I've been feeling the pressure of not being ready for Christmas.  It's been overwhelming for me to be at work all day and then be so exhausted by the time I come home that I can't get everything done that I want to.  Add in the pretty intense physical pain that the snow and cold has increased in my body the past few days and it can turn in to a little bit of a downhill spiral quite quickly.

Yesterday after work I found myself pretty discouraged... here it was Friday afternoon, Christmas just three days away, and I didn't have all the gifts purchased, I needed to grocery shop still and not one thing was wrapped.  I had been up since 5am, worked a full day at the office, my body was achy, my head was feeling like there was a knife sticking out of my temple, I was completely exhausted and to make things crazier, we had tickets to Desert Star for their holiday show at 6pm.  All I could think of was... I ain't got time for that!

I stopped at Deseret Book on my way home to see if I could get some inspiration for a couple of people that I have particularly struggled to shop for.  Just pulling in to the parking lot stressed me out.  I've never seen that store with so many people in it!  I was there for just a few minutes before I walked out and drove home, determined that I couldn't face it alone and that I needed Mike to go with me for moral support to do any gift shopping.

As I started cleaning up a few things around the house, the guilt was piling up on me.  How could I leave all this for Mike to do with me when he was still working and I still had a few more hours before he got home?  I decided I would at least try and drag myself to the grocery store so that one thing could be knocked off the weekend to-do list.  I went to the Neighborhood Walmart across the street that doesn't sell anything but groceries, so it wasn't overly packed like every other store in the world.  While I was there I even picked up a few gift cards thinking that could relieve some of the gift buying later.  Overall, that little excursion went pretty decently, but I still felt even more drained.

When Mike got home we literally had to rush out the door immediately to get to the Desert Star for the show.  Luckily it's a dinner theater so we were able to knock out eating at the same time.  I have to say, the show was pretty awful!  We have loved being season ticket holders there this year, but the last two shows have been really disappointing.  The one saving grace of the evening was that we were there with good friends and we got to eat together.  However, by the time we left, we both couldn't help feeling frustrated that we had so much to do and had spent two precious hours watching something so bad.  We found ourselves snapping at each other as we headed over to Best Buy for a pickup and then to Walmart to get the last of the wrapping supplies we needed for the weekend.

Thankfully we recognized pretty quickly what was happening and both took a few deep breaths... it was 9pm and we were tired.  We mentally regrouped and finished out the shopping holding hands for good measure.  Thank heavens for the self checkout line!  The other lines all had at least 10 people with huge, overladen carts in them, and though there were at least 10-15 people in front of us in the self check line, there were 8 registers and it moved SUPER quick.

With conscious effort we were able to cheer up and salvage the rest of the evening together and we got home in one piece.  We decided that it would be better to wait on the wrapping until tomorrow and just relax and watch a Christmas movie together instead.  However, when it came time to finally go to sleep, my brain started churning.  That happens sometimes.  I lay there thinking over things and I get a bit discouraged or depressed.  In fact, when I'm THAT overtired I will admit that it's not unusual for me to start thinking about how much I suck as a wife and mother and how much better off my family would be with a real mom who doesn't have all these issues and can handle life.  I work myself up in to a blubbering frenzy with feelings of inadequacy and hopelessness.  Luckily I have the best hubby who always seems to know when something is wrong, even when I'm turned over in the dark and trying to quietly hold my breath to stop myself from sobbing out loud.  He always takes the time to love me, no matter how tired he is, and I always manage to fall asleep more quickly snuggling in to him.

I do have moments of despair sometimes... but they almost always sneak in during the times that I am way overtired and have tried to do too much.  A big part of dealing with MS is trying to plan ahead, pacing yourself and listening to your body when it's telling you to stop and sit down or take it easy.  It's hard because you can feel like you are being lazy or letting people down when you can't do everything, but I am finding that it really is the only way to cope and stay sane.  If you want to have less bad days...

My new little friend...

Say hello to my new friend.  I have been trying to think of some kind of exercise that I could feel motivated to do, even when I'm tired.  When we were in Hawaii I went down to the gym with Mike one morning and tried out one of these and loved it.  This little guy sits right next to my bed, facing the TV.  We have an entire exercise room in the spare room above the garage with a big weight machine, a treadmill and an elliptical, but sadly, I can't always find the motivation to walk up the stairs... pathetic? Yes.  But it's the truth.

This is definitely not the most beautiful bedroom decoration, but it's a constant reminder that I have no excuse not to get off my butt.  Even if I'm feeling so tired, I can literally crawl three feet to set myself on it and ride for 30 minutes watching food network or some other mindless television program that helps pass the time quickly.  I've had it for a couple of weeks now, and I quite enjoy my time on it... plus I don't feel guilty for not doing any exercise and I feel mentally better about doing SOMETHING to try and improve my health. 

Once the holidays are over, I will make sure it is a DAILY thing, rather than the spotty every other day thing that I've been doing while we have so many holiday events going on.  I have a helpful rule in place that I can't hang anything on it or put anything on the seat.  We will see how it goes I guess!  I'll report back the end of January. :)

Buckeye Tradition Fail...

I didn't think I was going to get any of these done this year, but Saturday morning I decided to have an impromptu baking session.  I don't know why I felt like I needed to... I think that this simply has been a tradition for me for over ten years now and as tired as I am, I selfishly refuse to let MS win and strip me of these kinds of traditions if I can help it.  This, (and rocky road fudge), is what I normally make for our family and friends, and though they may not know it, it's a labor of time and love.

This year I didn't make as many as I usually do, and I split the rolling balls and dipping in to two days to try and ease up the work.  I had purchased a new candy dipping tool off of Amazon just for this occasion and I will say, that made the dipping part quite a bit less stressful than it's been in previous years.  The fork and the prong worked the best, (I wasn't impressed with the loop thing), but by the time I was done dipping the first tray I was pretty grumpy, pretty sore, and just wanted the experience to be over.  I had to sit down every five minutes because my back and legs were throbbing and honestly, they didn't look nearly as beautiful as they normally do either because I was rushing just trying to finish.  At the end of the day, this may be the last time I attempt these... at least in this quantity.  If the tradition survives to make it to next year, it may well be a family only tradition.

Mike Sr and Dee helped me box up 40 little packages of buckeyes and fudge and put the tags and snowflake ornaments on them, then we put them all in the refrigerator in the garage to deliver the next day because by the time we had finished all that, I was absolutely whacked.

So it ended up a three day fiasco to make and take these little treats to the neighbors... and I think they would have probably rather have had something I picked up from the store anyway, haha.  So I've told my family to remind me to read this depressing post next year if I even contemplate suggesting that we do this again.  I suppose sadly, in this case, MS won.

Temple Square...

I don't expect a lot of family activities any more due to the fact that the kids are older and really have their own lives, but it was truly wonderful to get to go downtown as a family this year.  The cold causes that pesky zinging down my spine, (Lhermittes's sign), so I have to dress as warm as I can, but the zinging was totally worth it to be with these guys and have some laughs.

We had dinner at the Nauvoo Cafe in the Joseph Smith Building... they do the BEST turkey pot pie... and then walked around all the lights snapping pictures.  Time with them is absolutely the best Christmas present for me. 💕

Deck the halls...

This year decorating was a little different than it has been in the past... I was not able to get everything up in one day for the first time ever, but that is OK!  Life is all about adjusting now.  Thursday night the kids arranged to be home to decorate the big tree.  (I had always wanted a really tall tree and last year hubby obliged me with a 12 footer.)  I will admit that I wasn't feeling so great that night, so I pretty much sat and handed ornaments to the family who got them all up on the tree for me, but it was a lovely evening of decorating and watching the Cowboys/Redskins football game. 

Friday I wasn't up to doing more decorating, so the rest of it had to wait until Saturday when I had more energy.  I have always wanted a non traditionally colored Christmas room, (in addition to the traditional room with the red, gold and green, not instead)... well, this year we did it!  I am absolutely obsessed with everything aqua right now, so it was only fitting that the front room was decorated in that color.  I am seriously in loooooooooooooooove with this room.  

I've also always wanted a small tree in the front window that you could catch a glimpse of from outside... so this made me happy on so many levels. :)

Shout out to the hubby for the assist!  Bless him for helping me do all of this on his one day off.  On another note, Miles loves to sit and stare at the Christmas lights on the tree... It's the cutest thing. 

It's starting to feel festive around here!

Birthday wishes...

For the past few months I have thought I was 43 turning 44.  It turns out I am 44 turning 45!  I only have one wish each year for my birthday and that is that I get to have dinner with Mike and the kids, usually at Rodizio, and that we get a family selfie.  They never disappoint.  I love these three so much. 

Adjusting for the holidays...

We did Thanksgiving a little differently this year.  Usually I host Thanksgiving at my house and Mum does Christmas, but the way I have been struggling with energy I wasn't sure if I could handle it.  It was a really tough decision for me, but I wanted to be able to enjoy the time with all the family and help with the cooking and I knew that hosting would probably tip me over a bit.  So when Mum offered to have Thanksgiving at her house, I took her up on it.  

It was an absolutely wonderful day.  I don't know what it is about their new home, but I love it.  It feels so warm and inviting... not that the other one didn't, but there is something special about this home that makes it feel different.  I'm not sure what it is.  Having Thanksgiving there was lovely.  We all helped bring food so mum didn't have to do ALL of the cooking.  I tried to be smart about my assignments and do as much as I could the night before so I had minimal to do on Thanksgiving.  Mike helped with a lot of the cooking this time too, which was sincerely appreciated. We actually ended up cooking a small turkey and mashed potatoes the night before for his Mom who was not going to be able to come to dinner since she had to work all day at Walmart.  (Shame on Walmart for making their employees work 9 hour shifts on Thanksgiving.)

Thanksgiving day I basically just had to assemble what I had prepped the night before and throw it in the oven.  Then off we went to Mum & Dad's.  It was great!  I really enjoyed spending the day with everyone.  There were lots of laughs. :)

We went to another MS event recently and learned about dealing with the Holidays.  They had some great tips.

• Ask someone else to host the holiday dinner if you don't feel up to it.  (I didn't even have to ask.  My mum offered months ago.)
• Accept help with errands, extra household chores and other responsibilities during this extra busy time of year.  (Mike is so wonderful at offering help with all the housework.  I've also learned to be more gracious and accepting of his moms help.  She lives with us and pitches in quite a bit to help out.)
• Shop for gifts from the convenience of your own home.  (Can we say amazon.com and walmart.com?!?!  
• Nap before the family gathering.  (Or sleep in is more what like what I do.)
• Lean on others to help with clean up duties.  (I leaned on my family to do our share of this big time this year.)

At the same event they spoke on depression and adjusting to the MS family dynamic.  I will be the first to admit that I have struggled with depression.  I have had it for years, but it has definitely been more of prominent the past year.  How grateful I am for lots of family support and love as well as good modern day meds that help to balance me out.  The thing I get most depressed about is what my family, (mostly Mike, but my kids and my parents too), have to deal with.  I don't want to be a burden, and I don't want them to not do things because I can't.  I don't want that quality of life for them.  I do struggle sometimes thinking about the future, but that thinking also motivates me to try harder.  And it ALWAYS helps to talk those thoughts through with a nurse or someone I trust.

The next month is going to be busy, but I'm looking forward to it.  The energy meds seem to be helping as I am no longer falling asleep at 7pm every night, ha ha.  I find that if I keep a calendar and plan things ahead it is much easier for me to keep up as I can adjust.  For example, if I know we have a bigger event, I can arrange to take the day after off of work or take a nap earlier to help me get through it.  I can simplify gift buying to conserve my energy for the family time.  I can simplify baking and meals.  It's all a juggling act, but so far so good. :)

The quest to be thankful...

Sometimes I get so focused on the things I am struggling with that I forget to count my blessings and be thankful.  November is the perfect time to try and reset that kind of outlook because there are reminders everywhere of my favorite holiday, Thanksgiving.  This month I decided I would try and think of something each day that I was thankful for to focus on.  Truthfully, I've been writing bits of this post all month!  Here are some of the things I am thankful for this year:

First, I am thankful for my sweet hubby.  He has to be the first thing I am thankful for because he has to deal with "crappy me" more than anyone else.  While I try very hard to paste a smile on my face even when things aren't going great, my hubby just lets me be me... He lets me cry, he lets me be angry, he lets me be fed up, he lets me say whatever I need to say, and then he just lets me snuggle up and cuddle and he loves me anyway.  I honestly do not know what I would do without him.  I'm sincerely grateful to have him through all the good and the bad, for time and all eternity... I definitely got the better end of that deal.

One of the things that scared me when I started reading about MS was the statistic on how many marriages suffer or end because of this horrible disease.  My darling hubby goes out of his way every day to try and make sure I know how much he loves me.  He runs the shower for me every morning so it's warm when I get out of bed.  He makes me breakfast and lunch while I'm getting ready and writes a cute note on a napkin which he places in the bag of food for me to find when I get to work.  He reads the scriptures to me at 5:45am while I'm running a curling iron through my hair and makes sure we have a prayer together before I leave.  I could go on and on about the things he does for me every day... how he does all the laundry and helps keep on top of the house.  How he calls and tells me he's grabbing dinner when he knows I've had a particularly stressful day.  How he gives me my shots so I don't have to do it myself and how he rubs out my legs and massages my back when my body is aching after it.  I am a very blessed woman and I know it.  He is the most amazing man and I am so thankful for him.

I am also thankful for these two blessings. We often wonder how two kids we raised the same ended up so different, but the more I thought about it today, the more I realized how many things they have in common. They both care deeply for people and take their relationships very seriously. They would both give you the coats off their backs if it came down to it. They both have the most amazing sense of humor and make us laugh. They both have their dad wrapped around their little fingers!! And they both are terrible at keeping their rooms clean and laundry put away. However, I have the most incredible amount of love in my heart for them and I’m so grateful for the joy they bring in to my life each day.

One of my favorite things is when they both happen to get home at the same time, (even if it's late at night), and they come in our bedroom and camp out at the bottom of our bed chatting to us.  The puppy usually comes in to and no matter how tired Mike and I are, we can't turn any of them away.  I treasure the moments like that.  It's when I am most reminded that the most important thing in my life is my family and that I want them to be mine for all eternity.  I can get through anything knowing that I have them.  I'm so thankful to have that amount of love.

“I, (Petra), having been born of goodly parents...” I am thankful for these two cute characters who are not only the best Mum and Dad, but are also Mike and I’s favorite people to hang out with. Whether it’s dinner or playing cards, the evening is always guaranteed to be filled with smiles, laughter and an Elvis singalong with Alexa.

The beginning of this year I was shocked to learn that my mum and dad were putting their beautiful home in Draper up for sale.  I had always thought that it would be their forever home, but they both "felt" it was time to move.  I was even more surprised when they started looking close to where we lived.  We were absolutely thrilled at the idea of having them closer to us, but as I listened to them talk about it, I honestly wasn't sure why they were making this change because I wasn't convinced they wanted to leave their current home.  They purchased an amazing home in Herriman around April of this year and as I watched the outpouring of love from their old ward as they prepared to move, I was still perplexed as to why they were coming to this side of the valley.  They seemed to be giving up so much.  

Then in June, while their new home was undergoing some renovations in preparation for them to move in, I received my MS diagnosis, and I finally, humbly understood.  My mum and dad have always been the kind of people to listen to the Lord and follow his spirit no matter if it is what they actually want to do or not.  I firmly believe that their promptings to sell their home and move over closer to us was the Lord blessing me in preparation for the things to come.  Having them move just around the corner from us and knowing that that amount of love and support is just 5 minutes away has been the biggest blessing to us this year. They are the best kind of people with the biggest hearts.

This little sweetheart is such a blessing to me.  Because of her, I'm never home alone.  This may not seem a big deal to a lot of people, but the times I am home alone can be some of my toughest times since they are the times when I have no distraction from my thoughts or my symptoms.  This little girl right here is very perceptive... I can't tell you how many times she comes and curls up right next to me on the bed or snuggles up and licks me to death when she can sense I'm struggling.  She gives so much unconditional love and always brings me back to a positive reality.

I would be very ungrateful if I did not share how thankful I am for my testimony and my faith in my Savior Jesus Christ.  At my most weak times, I have only to open my scriptures or fall to my knees to feel His love for me.  Sometimes I feel like I can literally feel His arms around me comforting me.  I am a physically and spiritually imperfect person... I make lots of mistakes, but I know He loves me anyway.  He loves all of us unconditionally, no matter what our current circumstances and His hand is outstretched always to embrace us.  He is the perfect example of pure love, and I am so thankful for the peace I feel through Him.

I am also truly grateful for modern day medicine and health care.  If I had been diagnosed 20 years ago, things might be a lot different for me, and the progression of this disease might be quite more substantial.  However, the strides they have made with medications and research these past 20 years have been significant.  I spoke to my nurse, Brandee, yesterday about my biggest fears, and she reminded me of this simple blessing.  I will have hurdles to overcome, but I'm getting amazing care and treatment and I feel very blessed for that.  I have a good job with brilliant health benefits too.

This year, despite this pretty major change in my life that I am still trying to figure out, I have a lot of positive things to focus on.  There truly are so many beautiful reasons to be...

Let's try this again...

I went to see Dr Banks for my check in last week.  I just love her and how willing she is to spend all the time with me that I need in order to make sure I have all my questions answered.  That is a rare thing in a doctor!

One of the things we discussed this time was the medication for my fatigue that I had tried in July which had made me so sick, (Amantadine).  She talked about how that kind of sickness was not a normal side affect of the medication and how it could have been the after affect of all the steroids I had taken that may have caused that to happen.  So really, it came down to the fact that I needed to give it another try... but I wasn't exactly thrilled at the idea.

I decided I would wait and try it on a Thursday because I got sick the second day last time and if I was going to give it a good shot, I would need to have the weekend to see if the sickness was going to pass if it did start up again.  (Being sick at work is definitely not fun.)

Well good news!  The medicine did NOT make me sick this time, which goes to show that sometimes it IS worth giving something another try.  Now I just need to give it a few months to see if there is any improvement in my energy levels.  I've not had any caffeine since I got back from Hawaii and I'm eating "cleaner," (very low carb), in hopes that all of these things will help decrease my levels of exhaustion so I can be a stronger wife and mom.  Here's hoping! :)

A much needed break...

We had been talking about going on a vacation in October since the beginning of the year, but weren't sure where we were going to go.  Last year Mike and I had decided we were going to celebrate our 25th anniversary this past summer in Hawaii, but so much has happened since then and all the medical issues, doctors appointments and new medications etc put a bit of a damper on that.  (We ended up just doing a weekend away at Park City.)

The thought of turning Hawaii in to a family vacation didn't really appeal to me at first because it was honestly something I wanted to do just the two of us, so about six weeks ago we started to plan a trip to San Francisco for the four of us.  There is lots Mike and I have always wanted to do and see there, so we were pretty excited with the idea, however, I couldn't bring myself to commit to anything for some reason.  I continued to double think it and the more I thought about it and talked about it with Mike, the more we both realized we just needed to get away to somewhere beautiful, NOT in the city, where we could just relax.

Four weeks ago we decided to look at plane tickets to Hawaii just to see what we would be looking at for our family of four and we found an incredible deal on airfare. ($460 round trip). We then immediately found an amazing 1150 sqft condominium for rent in a beautiful beach side resort that would give us and the kids their own space so we wouldn't be on top of each other the whole week.  After looking at all the beaches and waterfalls and seeing the weather was currently mid-high 70's, I was sold. We booked everything that night.

Last week was the most amazing family vacation week we have ever spent together. We got off to a bit of a rocky start when after sitting at SLC airport for over six hours, they finally cancelled our flight because of the fires in California.  Due to a wind shift, nothing was being allowed in or out of San Francisco, which is where our connection to Kauai was.  After spending half an hour on the phone with the airline fighting to try and get us on a flight before Sunday, (it was currently Thursday), they finally got us on a flight for the next morning but we would have to go to Dallas, then Los Angeles, then finally get to Kauai.  It definitely was not the ideal situation, but it was better than waiting three days to get out of Salt Lake.

Dee and Mike Sr didn't mind the detour in to Dallas at all.  Mike enjoyed true Texas BBQ in the airport,  and DeAnna spend an hour and $100 in the Dallas Cowboys Pro Shop.

Personally, the trip was extremely difficult for me.  The first two flights were not too bad, but by that last flight of almost 6 hours, my body was done... I was in quite a lot of pain and I was zinging and having trouble breathing... honestly, I thought I was just going to pass out on the plane... I don't know how I made it through the last couple of hours.  I literally wanted to kiss the ground when we got off of the plane.  It was about 8:30pm Hawaii time when we finally arrived, we had been traveling for what seemed like two days since we had been at the airport the whole day before too, and I was not feeling awesome, but the guy at the rental car company, Steve, was wonderful and reset our mood with his friendliness and happy spirit.  Isn't it amazing how one persons kindness can change your whole entire outlook?

We left the airport upgraded to a Black Jeep Wrangler... what a fun car to explore the island in.  We absolutely loved it!  We arrived at the Beach Resort shortly after and walked straight in to heaven.    After having made it through the initial hiccup, we were ready to enjoy paradise.

I can't say enough about the suite we rented through VRBO.  This was our first time going this route, and we were seriously impressed.  If you have never tried this, I highly recommend it after this trip.  Not only was the place spacious, air conditioned, (which is definitely not the norm in Hawaii), beautifully updated with two full master suites, a full kitchen, living room and dining areas in the suite and on the lanai, but the owners of the suite had also made sure we had everything we needed for the week... there was a washer and dryer with detergent, dishwasher tablets, pantry items like spices, foil, and baking supplies, a beach umbrella and chairs, beach towels, boogie boards, pool toys, a wii, board games, books... it was absolutely incredible.  The best place we have ever stayed by far.

The resort had a 2 acre pool with a lazy river, hot tubs and water slides.  It was right on the beach so we could walk out at any time to put our feet in the sand.  Three times we were lucky enough to see Monk Seals sleeping right on the beach which was pretty amazing.

The whole week was fun, relaxing and BEAUTIFUL!  Some of the most stunning landscape I have ever seen in my life.  Throughout the week we explored Hanalei Bay and walked the pier, we dropped in on the wet and dry caves, (Waikapalae cave and Maniniholo cave), where they filmed parts of Pirates of the Caribbean On Stranger Tides, we visited the Kilauea lighthouse (one of the best views on the island), at the wildlife refuge, we drove through the Kauai tree tunnel on Maliuhi Road, watched the surf spray several stories high at Spouting Horn, drove deep in to Waimea Canyon, the "Grand Canyon of the Pacific", stopped at every waterfall and valley lookout we could possibly find, and I think we visited every beach possible on the Island.  I have to say they were all amazingly picturesque, but our favorites were definitely Lumahai Beach, where they filmed the movie "South Pacific", and Poipu Beach down south.

The whole island was so vibrantly green with the most bright splashes of orange, purple, deep red, white and yellow flowers... just so magnificent to look at.  Then the complement of the blue skies and green & blue water with white clouds... I was in awe everywhere we drove.  It was breathtaking.

The highlight of the whole week for all of us was definitely the Smith Family Garden Luau.  We were greeted with shell lei's and jumped on a tram for a tour of their beautiful 30-acre garden.  We were served fun drinks in the open bar while they performed the Imu Ceremony, (pulling the Kalua pig wrapped in leaves out of the earthen imu oven.)  We enjoyed a feast of traditional Hawaiian flavors including kalua pork, beef teriyaki, chicken adobo, mahimahi, lomi salmon, fresh poi, hawaiian sweet potatoes, mac salad, namasu salad and the most amazing tropical fruit.  I didn't even know I liked papaya, but that was scrumptious!  I also tried guava and dragon fruit and of course enjoyed the sweetest pineapple I've ever tasted.  We ended the evening watching the Rhythm of Aloha Show, where they performed dances from Tahiti, the Phillipines, New Zealand, Samoa, Japan and Hawaii... and ended with the coolest Fire Dance performance.  It was the most incredible evening.  Our favorite experience the entire week.

We enjoyed some great food all through the week.  Yummy Mexican at Mariachas, the most incredible pancakes/waffles at Kountry Kitchen, delightful burritos at Da Crack, juicy burgers at Bubbas, and luscious coconut shrimp at the Shrimp Station to name a few.  We also quickly became addicted to shaved ice.  There is nothing like sitting under an umbrella on the beach enjoying a tropical shaved ice.  Dee told me there is a place in Utah that does these... I'll definitely be visiting! :)

I was blessed to have very few issues physically.  The weather was perfect to keep my symptoms at bay.  Because the week was so relaxing, I wasn't overly fatigued, and it got dark early, so we got to bed at reasonable times every day.  It was just so wonderful.  I'm so glad we were able to take the kids and enjoy such a memorable week together.  After the long year we have had with all my new health issues to figure out, it was definitely a much needed break for everyone... a week that we could just take a deep breath and enjoy life together.

Hope...

One of the things I love about having this place to write things down is that it helps me sort through all of my feelings.  More often than not by the time I finish any post I have typically managed to weed out most of my negativity and find something positive to hang on to.  When I haven't written anything in a couple of weeks, it's usually because those weeks have been a bit rough for me and I have nothing constructive or positive to say about the situation.  Eventually I sit down and have a go though, because I really want to find something helpful, or maybe the better word is actually "hopeful" to get me through.

Such has been the case the past couple of weeks as I have contemplated the struggle of random pain.  Truth:  I get so scared when I feel pain in a place I've never felt it before.  Sometimes I get so used to pain in an area that I don't notice it so much.  Like with the zinging down my spine, the shooting pains down my shoulder in to my arm and the stabbing pains in my lower back.  Some pain you just have to learn to live with, and I get that, but some pain is a bit more scary.  Like the crushing pain behind my eyes I will sometimes randomly get at work when I am sitting under florescent lights or at home when I close my eyes and try to go to sleep.  What is the deal with that?  Closing your eyes is supposed to relieve pain, not increase it.  And that kind of pain scares the crap out of me because I know that some people with MS do lose their sight, whether a portion of it or all of it, temporarily or permanently.

Or how about a couple of weeks ago when I was laying in bed trying to fall asleep and all of a sudden it felt like someone was sticking a long needle between my toes.  I'd never felt that before.  It was almost an hour before it subsided, and it seemed to only go away because Mike rubbed it out for me.  That's a scary kind of pain.

Another pain that frightens me is shooting pains or temporary numbness down the right arm, because that arm is usually just fine.  (Unlike my left that is partially numb all the time in the lower arm and hand, but then has shooting pain down the shoulder/upper arm area.)

The different, random pains I experience don't just irritate me because they are physically painful, but they can emotionally depress me or make me anxious too.  Some days I feel confident I can get through the day with Ibuprofen, Tylenol and a Diet Coke.  Other days I feel like I'm holding on desperately to the end of a rope and if I have to deal with just one more stupid symptom I'm going to lose it.  Those are the days it's really hard not to lose hope.  Truth:  There are more days like that than I ever care to admit, and I'm still learning how to deal with them.

This morning though as I read through a few verses of scripture, determined to find some peace, it was like a few words jumped right out of the page at me:  "Ye must press forward with a steadfastness in Christ, having a perfect brightness of hope..."  Hope... that little word seems to prick me in the heart a bit right now.  When they tell you there is no cure for something, it can be hard to have hope.  But the words were a good reminder that I need to press forward, (pressing implying active pushing through difficulties and obstacles), with a positive attitude and faith in Christ.  When I think about it, it is my faith in Christ that genuinely gets me through the harder days.  Priesthood blessings, prayers, the simple knowledge that the Savior knows what I am going through because he has suffered in the same ways as me, (and in many, many more ways than I ever have or ever will suffer.)  It is those kinds of things that help me to have the most hope.

Later this afternoon as I scrolled through my Pinterest feed, there it was again, that same word... hope.  Another little reminder but this time with a different connotation that I have actually never seen before but which definitely is relevant to my current situation:

Glad for the little random reminders I get... I definitely needed them today

Another Birthday...

Mike Jr's original due date was September 22nd.  When he still hadn't arrived by Mike Sr's birthday, (September 27th), Daddy decided he was going to try and get him to come ON his birthday.  He drove me downtown to Washington DC over all the bumps and cracks in the road, he made me walk, (or more like waddle), around Brookside Gardens uphill and down for over two hours and did everything he could possibly think of to get Mike Jr here so they could share a birthday.  I can't tell you how deflating it is for a pregnant woman to go in to a WHOLE other month before delivering her baby, but this kid was a stubborn little guy and didn't come until HE was ready... October 1st, 1996.  The little snot is still as stubborn as a mule to this day, but I love him so much.

One of the hardest things for a parent is watching people pass judgement on your child.  This kid has such a funny, sweet personality.  He may have a potty mouth sometimes, (which I'm constantly calling him out on), but he is a genuinely good person with a heart of gold.  When he was in high school, many kids could not believe that he was Dee's brother.  The comments she got sometimes were almost funny to us, but a sad reflection on society.  "That's your brother?  I thought he was a drug addict!"  Nope, this kid has never done drugs or drank alcohol his entire life.  He has prided himself in living a "Straight Edge" lifestyle for as long as I can remember.  But the long hair and tattoo's bring such harsh stereotypes sometimes.  I have to say though, be careful how you judge people.  My baby may have long hair and tattoo's and not go to church, but my daughter drove home a lot of "good church going youth" who had partied too much to drive themselves and hid a lot more than that from their parents.

I love this boy so much, and anyone who truly knows him loves him too.  He has taught me that you literally can not judge a book by it's cover.  That lesson has helped me in many area's of my life... from simply talking to people around me, to actually hiring people, to just being able to love people for who they are.  My goodness, this world needs more love in it right now.  We need to be the kind of people who smile at others and are kind to everyone, even if they don't look, act or believe the same things as we do.  Life is too short to pass judgment and unless you have walked in someone's shoes, you have no idea what they are going through, or what battles they are fighting.  Things are not always what they seem.  (After all, there are plenty of people that know me pretty well who have no idea I'm battling MS, even now.)

Happy Birthday sweet Mikey.  How are you 21?!?!?!  I truly love you with every fiber of my being.

A Grocery Shopping Miracle...

One of the things I struggle with is grocery shopping when I need more than just a couple of items.  After a full 8-9 hours at the office, I am more often than not pretty beat.  I can have every intention of stopping at the grocery store on the way home, but then the thought of doing all the grocery shopping, unloading the groceries at the cash register, putting all the groceries back in the cart to take out to the car, loading up the trunk and then unloading everything and putting it away once I get home and then trying to cook dinner?  Well lets just say I have done it enough times to know how crappy it can feel and so I often pass up the store, go home and just make do with what we have in the house.  Except after a few weeks, the choices can start to look a little bleak.

So my nurse, Brandee, suggested to me that I try grocery pickup.  I guess Walmart does it as does Smiths Marketplace in my area, but Walmart is free and Smiths charges a fee, so I figured I would try the free one first. ;)  (As a note, at both places I was given the same prices as in the store, including any sales.) 

Let me just say that I am pretty fussy about picking out any fresh items, so I'm not sure I would do those items this way, but for all the staples, this was A.MAZ.ING.  I picked out all my groceries online, chose the hour window I would be there for, and paid for my order the night before.  (Used a first time $10 coupon too!)  Then I "checked in" on the app once I was on the way the next day so they had a heads up I was coming.  They did all the shopping, brought it to the car and loaded it in the trunk for me while I sat in a pickup parking spot for 10 minutes surfing my phone.  I signed that I had picked it up and was on my way.

Did I feel like a lazy bum?  Absolutely!  But the stores associates were so friendly and kind, and I was super happy with my order.  Everything was in very good shape and within plenty days of the expiration date when I got home, (which was a big fear of mine).  Not one item was missing, and because I had chosen the substitution option if they were out of something, I even got a couple of deals.  (They charge you the cheaper price if they substitute something for you and still give you the option to decline the substitution once you know what it is... That meant I got some name brands instead of Great Value brand items for a couple of things they were out of for the price of the Great Value brand.)

At the end of the day though, the main point of this story is that I had SOOOOOOOOOOOO much more energy having NOT had to do all the extra work myself.  What a blessing for any one with an illness, little kids, a sick family member... Good job Walmart!  And thank you, you totally made my day!

Happily Ever After...

This week was Mike Sr's birthday.  If anyone deserves to have a happy birthday, it's this guy.  Good heavens, with the amount of crap he has had to deal with the past few months, he deserves much more than one day of celebration. :)

As I was scrolling through my weekly dose of Pinterest quotes to find one that adequately expressed my love for this man on his birthday, I came across this one:

As I read this quote, it touched my heart a little, because let's face it, no-one ever really associates tears with their "happily ever after." 

"Happily ever after" is a phrase commonly used in fairy tales to signify a happy ending.  It's how the whole rest of the main characters' lives are summarized.  Reading those fairy tales I think I subconsciously always assumed that the rest of their lives were in a word, perfect.  No anger, no arguments, no sickness, no death, no issues at all.  They just lived happily, forever!  And in the end, isn't that what we all want?  Isn't that what we are looking for?  Our own version of "happily ever after?"

So then where does me having a chronic disease that attacks the central nervous system, (that currently has no cure), leave Mike and I with our "happily ever after?"  We don't know what lies ahead for me.  We don't know how fast this disease will progress or what disabilities I will be left with as the days tick by.  BUT, does that mean we are destined to never live happily?  Of course not.

This quote reminded me that "happily ever after" doesn't mean that any of us live without trials or burdens to bear... every one us has different struggles during our lifetime... and there will be tears.  It's pretty much guaranteed.  But that doesn't mean we can't have the laughter and the joy and the happiness too.  

"Happily ever after" to me just means that I get to face my hard days with the people that I love, and I get to help them through their hard days too!  And together, we can find happiness and joy no matter what our physical circumstances are.  So HAPPY birthday sweetie.  I'm so blessed to have you in my life.  I love you, I love our kids, I love our parents, I love our families, I love our little puppy and I love our life.  These are the things that make me truly happy.  You make me happy.

Hello Fall...

And just like that, summer is over.  Hallelujah!  That was the LOOOOOONGEST summer EVER.

The last couple of days have been pretty amazing for me.  The temperature just all of a sudden dropped here in Utah as it usually does sometime in September. Thursday I walked out of my office building at about 3pm and waited for the zinging in my neck and back to start just like it does every.single.day in the three minutes it takes me to walk in the hot sun from the office to the car.  (My neurologist told me the technical term for the electric shock sensations down my spine is Lhermitte's Sign, but I can't ever remember that, so I just call it zinging.)

However, this day was very different... the zinging never came!  I actually wanted to dance in the parking lot!  I can't even properly convey the private celebration that went on in my head.  My spirits were lifted tremendously.  And it just got better as I got into the car and realized that the car wasn't even hot! Usually I have to quickly turn on the AC and drive a couple of minutes with the windows down to get all the heat out.  Just that few minutes a day of the intense heat kills me for the next few hours.  Not only does the zinging bother me tremendously, but whatever small amount of energy I had left is immediately drained out of my body, making me feel like I am just going to collapse.  I can totally be planning on stopping at the grocery store on my way home right before I leave work and by the time I get in the car I know there is no way I can physically do it.

The afternoon was wonderful... I stopped at the grocery store and did a big shop without even breaking a sweat.  After unloading the car and putting all the groceries away I opened up all our windows in the house and then sat out on our porch swing with Miles for an HOUR!  (Usually I can't go out until after 8pm.)

I made dinner and even managed a lovely walk with the hubby.  I can't remember the last time I accomplished that much in one day after a full day of work!

Yesterday it was registering 65 degrees when I left the office and once again I was energized feeling the cool breeze on my face.  I stopped and picked up a cake from Market Street Grill for my Dad's birthday, stopped by Smiths to grab a card and gift card, got some cleaning up done at home, sat on the swing with the dog, cleaned myself up and was ready for a lovely evening with Mike and the parents to celebrate Dad's birthday by 5:30.

We didn't come home until after 11pm, having thoroughly enjoyed a scrumptious dinner followed by lots of laughs and games for the entire evening... and I still felt wonderful.  Honestly, I knew the heat was horrific for me, but I had no idea it had THAT big of a bearing on my wellness.

So hello Fall!  Hello happiness!  Hello cool crisp air and walking through crunchy leaves.  Hello vibrant yellows and oranges.  Hello pumpkins, football, hot chocolate and hoodies!  Please stay for a while.  I'll love you forever! 💗

To be seen as we truly are...

I wasn't feeling up to much last night so I started flipping through the TV channels and to my great excitement found Cinderella on one of the stations, (the 2015 version with Lily James as Cinderella, my absolute favorite!)  Near the end as she bravely goes down the stairs to face the prince as an "honest country girl" rather than the princess she thinks he would rather have, you hear the narrator say in the background, "This is perhaps the greatest risk any of us will ever take... to be seen as we truly are."  I've heard that quote so many times, (as I do love that movie), but this is the first time it struck me so profoundly in my heart.

One of the hardest things I have struggled with the past few months is deciding how private or public I want this part of my life to be.  With the exception of family, a couple of close friends and a handful of coworkers, I haven't really told many people about my MS diagnosis or what I have been going through the past year. And somehow I've actually done a pretty decent job of keeping everything pretty well hidden! I've literally only missed two days of work due to illness that were unscheduled through the entire ordeal, and that was the week of my lumbar puncture and the first day I went on to the 100% dose. Overall, I think I'm handling it pretty well!

But to be honest, I'm getting more and more tired... and I'm not talking physically here.  I handle that kind of tiredness by coming home and napping, getting to bed early, taking energy vitamins, drinking some caffeine, or sleeping more on the weekends.  The kind of tired I'm talking about right now is the mental exhaustion of trying to hide who I am and what I'm going through.  And it's not because I want or need any help, pity or attention from anyone at all... I have the best family and friends, so I have the help I need when I need it already.  What I long for is just some understanding and support when things don't go as I planned.

There are times I have to say no to doing something or going somewhere because I physically can't handle it that day.  There are times I can't be outside because it is too hot and it aggravates my symptoms in major ways.  There are times I can't substitute for someone in church because I'm so physically exhausted on the weekends.  There are times I have to leave an event early because I've got the headache/eye pain from hell.  There are times the weeds in my yard may look crappy or the dishes aren't done yet if you stop by because I've already spent all the energy I had that day on my other family or work responsibilities.  I have to set limits now and pace myself to get through each day and I guess I just want the people around me to understand the reason rather than just think I'm lazy, rude, or unwilling to help.

So if you got the link to this blog or post in a message or text or are just finding out about all this in any way, congratulations!  I care about you not thinking I'm just lazy, ignoring you, don't want to get together or have thrown you to the side in some way.  I'm beginning to take the risk to be seen as I truly am... in baby steps and waves as my pride and ego will let me.

Will you take me as I am?

My First MS Lifelines "event"...

I took the day off of work today to attend an "event" put on by MS Lifelines.  They host quite a few events yearly for people with MS and the wonderful people who help care for them, (in my case, my hubby.)  It's a place you can go to get some education, share experiences, and also meet other people in your area who have MS.

This particular event was led by my MS LifeLines Nurse,  Brandee, who has come to see me quite a few times at my home already.  (I just love her.)  I was initially very apprehensive about going.  I was nervous to go somewhere where I didn't know anyone and I'm still feeling super emotional so I knew it would be difficult for me to sit through something like this without having a bit of a hard time keeping it together.

This one was at Thanksgiving Point's Harvest Restaurant and we got there a little bit early because, well, I hate to be late.  As we sat outside the restaurant and watched some of the other people arrive, I felt more and more sick.  A lot of them seemed to know each other already and here I was, sitting in the corner, wanting to be invisible and holding on to Mike's hand like it was my life line.

One of the first things I noticed is that there were lots of walkers and canes and that hit me hard. These are the first people I have ever seen, (that I know of), with MS, and so I was aware that I was specifically looking initially at their physical capabilities to see what I had to look forward to in my future, and I will admit it scared me at first.  I honestly just wanted to turn around and go home, and if Mike hadn't been there supporting me I know I would have left, (if I had even made it in at all.)

As they called us to go in, I walked over to sit down next to a beautiful lady with snow white hair, pristine makeup and the sweetest smile.  She was using a walker herself and Mike stopped to help her get comfortably in to her seat.  To say it was all very overwhelming to me at first would be a bit of an understatement.  I was in a room full of strangers, yet at the same time I felt some peculiar emotional connection to every one of them, so I tried really hard just to focus and keep it together.

One of the ladies sitting on the other side of Mike asked us where we were from and which one of us had MS and I pretty much immediately dissolved.  She proceeded to ask me when I had been diagnosed and it was all I could do to get the word "June" out of my mouth.  In that split second, I could see the knowing look in her eyes... she knew exactly what I was going through and honestly, that was a little comforting to me.  Thankfully, Mike stepped in to carry the rest of the conversation.

The next thing I knew the sweet lady next to me was patting my hand and asking if I was OK and if I wanted some bread.  All I could get out was that I would be fine, and this was just all still very new to me and I was just trying to adjust.  At that point, that darling woman just took the lead and opened up to me.  She told me she was diagnosed in the year 2000 and what a huge adjustment it had been for her.  She told me about her life and her family and her hobbies. I was so grateful to just sit and listen and know that there were genuine people in this room who knew what I was feeling, knew what I was afraid of, and knew what to say to me in that moment.

The time flew by.  The food was downright amazing, but the presentation and the company was the highlight.  I did shed some more tears throughout the time we were there, but they became more tears of gratitude and peace than fear.  I learned some wonderful things today from Brandee's presentation.

1. Be Your Own Advocate:  They gave me a list of trusted resources that I can use to learn about MS and connect with  others. (See the links at the bottom of this post.)  They also talked about preparing for doctor appointments ahead of time and taking a list of questions and concerns so I don't forget what I wanted to talk about.
2. Involving Others:  They talked about not being afraid to ask for help but also, looking for ways that you can show appreciation for the people who help you.
3. Focusing on Cognitive Issues:  They talked about things you can do to deal with brain fog such as: Keeping lists, setting reminders, keeping your mind active with mind games, (I personally love lumosity which my mum introduced us to), eliminating distractions and focusing on one thing at a time.
4. Standing Up for Yourself:  They talked about being ok with saying "no" to things sometimes that might stretch you too far and not feeling guilty about having to sometimes cancel plans with your friends or family.

I was also very humbled and grateful to meet some very kind, compassionate people who are "giving" even though they too are struggling.  Such a powerful lesson for me.  I am now aware of support groups that I can go to and meetings that I can attend to learn how to deal with all of this better.  I feel like I now have a connection to people who know and understand and that makes me feel less alone and a little less afraid.  

I am so thankful for Mike, not just for taking me today, but for being my constant rock and my emotional walking stick right now.  He literally holds me up when I feel like I can't make it a step further.  I worry about him and the strain this is all putting on him, but when we go to things like this all I see is his strength and his beautiful character shining through and I realize how blessed I am to have him in my life.  Looking back, it's kind of funny to see how our life has been guided in a direction to prepare us for this.  How blessed I am that he changed his career years ago to Physical Therapy! How blessed we are that we moved in to a rambler that has everything accessible on the first floor if we need it, but that has stairs for me to work on as long as I can.  How blessed we are that my mum and dad have moved just around the corner from us.  How blessed we are with the insurance and benefits we have through my job.  

As Mike and I were talking on our way home this afternoon, he mentioned how wonderful it was to see that every one of the people there today with MS were mobile with a cane or walker after many years of having this disease.  He then told me how blessed we were to live with this now when there is so much new research, so many new medications that have had really good results at slowing down the progress of the disease, and so much hope of a cure one day.  I am grateful for his positive outlook and for his ability to refocus my thoughts.  He smiles even when it's raining. :)  There are so many reasons to be thankful.  I just have to focus better on those things on the hard days. :)

The list of resources they gave us:

• mslifelines.com
• nationalmssociety.org
• mscando.org
• mymsaa.org
• msfocus.org
• msconnection.org