We Wish You A Merry Christmas...

From our family to yours!

Choosing Sanity...

For the first year in I don't know how many years I didn't make buckeye candy, (or what we call peanut butter balls), for our friends and neighbors for Christmas.  It may seem like a small insignificant thing but boy was it a tough decision for me!  Not because the candy is amazing or irreplaceable, but simply because it's been a tradition for me for longer than I can remember and I made the conscious choice to break it. 

Instead I simply bought bottles of bubbly and tied them up with pretty ribbons and shiny baubles.  As tough as this was to skip this tradition, it was a choice I made for my sanity and subsequently the sanity of my family.  And you know what?  It didn't ruin Christmas or make anyone feel less loved.  At the end of the day, the only one that even noticed was me!  Be ok with change.  Change can be good. ❤

Playing Dress Up...

Mike and I are not generally the most social people in the world.  Our idea of a fun night is getting some yummy takeout and laying in bed watching a marathon of NCIS or CSI.  However, this year my work Christmas party was +1 for the first time ever and so I told him we were going! :)  It was seriously such a fun evening.  

Our culture committee who planned it went all out.  The theme was speakeasy, (1920's), and while dressing up wasn't required, it was strongly encouraged... and I thought we could use some fun in our lives right now!  They had appetizers, a stellar buffet dinner and desserts, a live band, black jack, roulette and craps tables and lots of drinks!  It was so great to see so many people I work with every day in a more relaxed environment and everyone there really seemed to be genuinely enjoying themselves.  

My hubby is the most a.maz.ing sport!  Personally I thought it was lovely to get to dress up and basically pretend to be someone completely different from the norm, but for him to do this with hundreds of people he didn't know made me love him even more than I usually do.  I literally drug him around the place introducing him to all my amazing team members and got to meet all their significant others too.  

I don't know how they will top this party next year, but it was the most beautiful way to start the holiday season with the person I love the most in the entire world.  I think it's going to be a fantastic month!

Happy Thanksgiving!

Thanksgiving is my favorite holiday.  I think it's because it's pretty much like Christmas, which I also love, but without all the stress of presents and decorations!  Thanksgiving I get to reflect on all the blessings I have in my life and I can focus on spending time with the people I love the most and eating amazing food. 😉  

We weren't sure Mikey was going to be with us this year because he is traveling a lot for work, but thankfully he made it last minute.  I don't know what i'm going to do the first year one of the kids aren't able to be with us! 😟 Even the slight possibility of it happening hurt my heart this year.

We spent Thanksgiving at my mum and dad's.  A big shout out to mum for hosting again.  I love hosting Thanksgiving, but have realized that with limited energy, it's sometimes either let someone else host and just help with the cooking or be too exhausted to function the day of the holiday.

There were just ten of us this year but the food was incredible and the company entertaining.  I'm so blessed for the family I have.  I just love them all so much. ❤

Miles spent Thanksgiving with us at my mum's too, but we didn't see much of her... I think she had too much turkey! 😂

As I reflect on the things I'm thankful for this year, my family is at the top of my list.  I know I always express my love and thanks for my hubby, but he truly is the one that feels the brunt of this disease.  When I wake up in the middle of the night with leg cramps or body aches he doesn't hesitate to jump out of bed and rub my legs or back till i fall back asleep.  When I have to back out of doing something fun because I'm not feeling well, he never complains... he just tells me how much he loves being at home relaxing with me.  When I come home from a long day of work and am struggling to find the physical strength to make dinner, he swings by and picks something up without delay and brings it home with a smile and a kiss.  I am one lucky gal to have this guy in my corner.

I am truly thankful for him, for my parents, for my kids and other amazing family and friends who show me so much love, support and patience.  They are my biggest blessings.  ❤

Happy Halloween!

I wasn't going to do anything special for Halloween.  We have only been back a few days from our vacation, I am back at work so I was pretty tired by the time I got home and all the boxes of Halloween decorations were piled under the Christmas stuff in the basement.  It would have been easy to make the excuse not to make the effort and no-one would have said anything, but I feel like my choices at times like this are what define me.  

There are two MS-me's.  Multiple Sclerosis me says to do the bare minimum... hand out candy and let the day pass.  But then there is Mighty Strong me.  This me says get up, dress up, show up and never give up.  Mighty Strong me says to put in the best effort I can... for me and for my family.  

I'm glad to report that Mighty Strong me showed up today.  I didn't over do it, that would have been stupid.  But I made an effort.  I pulled the decorations out from under the Christmas stuff...

  

I then pulled the costume box down off the top shelf of my clothes closet and rummaged through it to see what I could find.  I was able to give Miles a makeover with the treasures I found in there! 😂 

She wasn't amused!! 😂

By the time Mike got home, I had baskets of candy ready with plenty of reserves... (we usually have a couple of hundred kids swing by)... and we had the most fun evening sitting together out on the porch, wrapped up in blankets and handing out treats to all the cute characters walking around our neighborhood.

It's worth it... making the effort, getting up, dressing up, showing up and never giving up.  It turns days that could have just passed by in to sweet, sweet memories with your family. ❤  Happy Halloween!

A Week Away From The Norm...

Things have been going remarkably well the past month, knock on wood.  I think maybe I'm getting more used to living with MS and I am definitely doing better at making adjustments and taking precautions.

This past week the Hubby and I went to San Diego for a week together, just the two of us.  We had such a wonderful time.  My biggest goal was for HIM to have fun.  He spends so much time doing so much for me, I honestly just wanted him to have a break from the norm and do things he wanted to do.  

During our week we visited SeaWorld, Balboa Park, the Air & Space museum, the Automobile museum and the Hall of Nations.  We boarded submarines, the Star of India and one of the boats used for filming Pirates of the Caribbean.  We cruised around San Diego bay, explored Coronado Island, La Jolla, Seaport village and the Japanese gardens.  

One of the highlights of the week was touring the USS Midway ship, which is a massive aircraft carrier that was actually used during Desert Storm.  Mike especially enjoyed climbing up in to the cockpit of a Jet and seeing more than 30 additional restored aircraft's and helicopters.  It was quite incredible! 

We also spent a good amount of time exploring the San Diego Zoo and Safari Parks.  There were so many beautiful animals there, but I think our favorite part of that adventure was definitely the Australian walkabout in the Safari park where Mike got to pet a baby wallaby. 

  

We ate loads of yummy food and genuinely enjoyed every minute together.  To me it literally felt like a honeymoon!  

Mike is very mindful of my energy and pain levels which can make him a little "over-protective" sometimes.  I love him so much and sincerely appreciate all he does for me, I just feel bad that my MS always seems to be at the forefront of his mind.  He was constantly making sure we stopped to rest for a bit and kept buying me bottles of water to make sure I was hydrated.  He would insist we spend time each evening relaxing at the hotel.  Even at the airport he would take both the large suitcases and his backpack leaving me with just a small backpack with my purse and medication in it.  From an outside perspective looking in I'm positive I look like a spoiled brat.  😔  It's a real challenge for me to not feel like a constant burden to him and that is my biggest struggle right now.  However, that is something I will need to figure out and work on.  Meanwhile, I do recognize how blessed I am to have him in my life watching over me.  It was such a lovely week and I'm so glad we had the opportunity to spend this time together.  We definitely need to plan more little trips away together! ❤

The Gift That Keeps On Giving?

No, it isn't a wart.  It'a apparently a cyst caused by "leaky joints?"  All I know is it's gotten bigger since I had my regular doc take a look at it a couple of months ago and it has got to go!  (Yes, I may be overly sensitive about it, but it feels like it sticks out like a sore thumb.  (Except it's technically a sore finger.)  This stupid thing catches on everything and it's painful when it does! I feel like I have to explain it to everyone I talk to just in case they catch a glimpse.  It's ridiculous.

*Sigh*  Most days I do fine with everything but then out of the blue the smallest thing sets me off.  This is quite literally the smallest little thing, but it is causing me some grief this week.  I did a dumb thing and googled cyst removal and now I can't get the images I saw out of my head... it makes me physically sick and I'm afraid of going back to the doctor knowing they may have to do that.  Yep, after almost two years of regular doctors visits I still get kinda freaked out.

Don't mind me, I'm just having a bit of a pity party tonight.  Tomorrow is a new day, right?

Pirates Piano Update...

Remember my post back in February about a new challenge?  Well, it has been a few months, but here's my update:

Good Riddance July...

I was feeling a LOT better this past Saturday.  The pain was easing up substantially day by day through the week and I was being sure to take it easy and not over do it so I didn't cause anything to flare up.  I had been able to do a light grocery shop as well as take a short trip to Homegoods during the week and I was on cloud nine! 

By Saturday I was ready to have a bit of fun with the hubby.  We went to the movies in the afternoon with some good friends to see Mission Impossible, (thank you deluxe recliners with heated seats), AND enjoyed dinner at Wallaby's afterwards.  (They have some good BBQ!)  I came home and laid down to rest after our outing as I was excited to go to church the next day after missing last week.

Sunday morning I was still feeling pretty good.  I got up and showered and got dressed and was doing great until I tried to put on pantyhose.  I immediately felt a sharp twinge on the left side of my back and it stopped me short.  I laid down for a few minutes, waiting for it to subside, and as soon as it had passed I moved over to the chair Mike had put in front of my mirror and started to dry my hair.  All of a sudden I felt the most horrible pain radiate all the way across my lower back... I can honestly say I have never felt back pain like that ever.  I tried to stand up and couldn't... all I could do was arch my back and slide off the chair.  

Mike had just gotten in the shower, so I was stuck.  I tried to stand and the pain just increased.  I was close enough to the bed that with some effort and a few tears I eventually managed to get myself up on to it.  Poor Mike.  He came out of the shower and found me laying on the bed having a bit of a meltdown.  I was so angry and so frustrated.  He put the e-stim machine on my back and I laid there for 30 minutes.  There went sacrament meeting.  I was able to get up after the treatment was over and I slowly finished getting ready.  We managed to get there in time for Relief Society so at least we didn't miss the whole block, but I was sad we missed the other meetings.  

The good news is that has been the last major episode I have had since then!  I have now been four days almost 100% pain free and I've had no pain meds during that time.  I am walking pretty much normally.  I am careful getting in and out of the car, bending and lifting, but literally I feel like a new person.  July has been a very long month for me.  Between my back and the heat there were a lot of days I was focused simply on being able to function and get through.  I was beginning to wonder if this was going to be the new normal, however the last few days have given me a renewed hope that August is going to be much better.  This weekend I'll try a few minutes back on my bike.  My activity tolerance is low because I've been so sedentary that I run out of energy quickly, however, I can work on that.  Good riddance July and hello August.  I'm definitely glad for a new month and a new start!

Medication Prior Authorization...

I was down to my last shot last week so I called in to Aetnas specialty pharmacy Monday to order.  To my surprise the pharmacist told me that my insurance authorization for the medication had expired and my Dr. needed to resubmit a request to the insurance company before they could ship it out.  However, she assured me this could be handled the same day and they could still get it out if they received it quickly.  I called my Dr and spoke to her assistant.  She told me they had actually faxed it over last week, but no problem!  They could fax over the form again immediately.

A few hours later I called the pharmacy again to check they had received it and could ship out the meds.  "No, we haven't received the form yet."  After several phone conversations back and forth and in desperation, a call directly to my main insurance number, I learned the form had been received but it "didn't have all the information they needed on it and the request had been denied.  However, if the Drs office would just call in they could get the information they needed over the phone and appeal the denial."  By this time it was too late to get the medication out today, but they could get it out first thing the next day and I would still have it in time for Wednesday so I wouldn't miss a dose.

Wrong.  The next day was Pioneer Day here in Utah so even though I had called and left a message the night before for the Drs office, they were closed Tuesday so no-one was available to call in to my insurance.  I resigned myself to the fact that for the second month in a row I was indeed going to miss a dose, but I was trying not to stress over it.  All I could think was... of course.  It's not enough that I'm in constant pain and can barely walk.  Now I'm going to lose my medication.  Really, what else can go wrong this month?

Wednesday came and it was back and forth on the phone again with no resolution.  I was a little bit frustrated at this point.  I hadn't heard anything back from either side by the evening and we were going to go in to Thursday with absolutely no progress.  Mike was stressed out of his mind.  I had learned last month with the whole UPS fiasco that you can miss a couple of doses and be just fine but he wasn't acknowledging that as an acceptable answer.

Thursday I called the Drs office first thing in the morning and they told me they hadn't made any progress and were going to make some calls and would call me back.  Ugh.  About an hour later I got a call back from them and they told me they had talked to my nurse Brandee and she had called Jean at MS Lifelines, (she is the drug companies insurance specialist.)  Jean was going to call the insurance company and get things straightened out and if needed, get me some medication to hold me over.  A few hours later as I was leaving work I picked up my phone messages and there was a message from Jean that everything was approved and to call the pharmacy to get the medication shipped out.  I was so relieved.  I called the pharmacy immediately from my office parking lot and even though it was too late to get the shots shipped out that night for Friday delivery, they were able to arrange a special Saturday morning delivery for me so I would have the medication for the weekend.

What a stressful week!  But I was SO thankful for Jean and Brandee for getting everything sorted out for me so fast.  At the end of the day I only missed two shots and I would be able to restart the medication without starting over again with the titration pack, (smaller doses.)  I am really grateful for people who advocate for me.  While I am definitely my own advocate too, it is so nice to know I have a support system of people behind me to help me with all these things.  I'm not sure why you have to get reauthorized yearly for a medication when your disease has no cure, so they know you still need it, but I now know to reach out for that authorization several weeks prior every July in case there are complications... and if there are ANY issues, I can call MS Lifelines and get help immediately.

It's been a crazy month.  Can August get here already?

Isn't it ironic... don't you think?

I opened my desk drawer today and found that my poor little stress man that Mike bought me a couple of years ago had literally exploded.  After I got over the "awwwwwwe maaaaaaaan" of the situation, I sat him on my desk and began to laugh.  I mean, how ironic was this situation.  This little guy literally looked just like I felt.  I really needed that laugh today.

It's been a few days since I finished the steroids and I'm honestly past done with everything.  I still have a lot of pain in my back.  Nothing seems to relieve it.  It felt good for a few days, but now that the steroids are done it feels like I'm back to square one.  I can't walk for more than a few minutes at a time.  I have to use a cane to get out of bed or up off the loo.  It hurts to stand.  It hurts to lay.    It hurts to sit on the couch.  It hurts to roll over.  I haven't called the Dr back yet.  I don't want another MRI.  I definitely don't want back surgery!  I just can't take anything else right now.  I'm sick of not being able to exercise.  I'm so grumpy and fed up and I'm tired of pasting a smile on my face.  I'm so frustrated that my poor hubby has to deal with all of this on top of everything else.  Bless him he is so very kind and loving and does so much for me.  I just want to be able to do things for him.  OK, rant over.

I'm going to try and stay flat all weekend and see how I feel Monday.  If it isn't feeling any better at all then I'll have to bite the bullet and call the Dr.  I'm not above begging for some prayers at this point.  The thought of surgery really scares me.  Here's to hoping a weekend in bed will fix me.