MS Awareness Month - Life with MS

"Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body." -National MS Society.  

Quite frequently I have people tell me they don't know much about MS.  Don't worry, I knew nothing about it either before I got diagnosed, and even then it took me FOREVER to accept it as my reality and start reading about it.  I don't usually have a list of symptoms that I can just rattle off out of my head when someone asks, but with this being MS Awareness month, I thought I would take a few minutes to write down and share some of the things I deal with regularly to help raise awareness of this "invisible illness."

Every case of MS is different and the symptoms can change in a blink of an eye.  I'm lucky not to need a cane or a wheelchair at this point in my life and I haven't had any blindness.  Those are scary thoughts to me and I admire and pray for the MS warriors who are currently fighting those battles.

This is MS, currently, to me:

Fatigue:  When people hear fatigue, they generally think, "Ok, no big deal... just get some extra rest.  Everyone is tired!"  However, MS fatigue is like nothing else I have ever experienced.  Before I was diagnosed one of the issues I was having was that I was falling asleep at 6:30-7pm every night.  Nothing I did helped.  It wasn't until they got me on some amazing medication that I got three to four hours of EVERY day back.  However, I still have very limited energy each day and have to choose carefully how to use it.  The best way I have ever heard MS fatigue described is that it's not the tiredness that people complain about after a late night, but rather a bone-crushing weariness that makes you doubt whether you can continue to function for even an hour more, much less until the end of the day.

Pain:  Flu-like body aches are pretty much the norm now, but most days I also get some combination of shooting, stabbing, crushing, throbbing, burning, relentless pain somewhere in my body... it can show up in my legs, arms, back or hips.  Sometimes all at once.  (I take a lot of Motrin and Tylenol.)

Spasticity:  Crazy charlie horses mainly in my legs and feet.  This is a pretty frequent occurrence that I am used to so I can handle them 90% of the time just fine, but sometimes I get one that takes 10-15 minutes to pass no matter what we do to try and get it to subside.  Those one's will usually make me cry.

Lhermitte's Sign:  The best way to describe this is the feeling of an electric shock or buzzing sensation starting in your neck and running down your spine.  It can happen when I bend my head down, twist my neck or even if I just get overtired or hot.  It's MUCH worse in the summer than it is in the cooler months, but it's the gift that keeps giving all year round.

Numbness/Tingling:  When I finally decided to go to the Doctor it was because the whole left side of my body went numb.  My foot, leg, arm and hand initially and then it started to creep across the trunk of my body towards my belly button.  They put me on IV steroids for 3 days followed by oral steroids for 6 more days... definitely some of the most horrible days of my existence.  However, I gained all feeling back besides the left hand and wrist area.  If you have ever fallen asleep on your arm and woken up with tingling or no feeling in it, that is what my hand feels like every day.  It does vary in intensity depending on the day, but it definitely makes it harder to play the piano like I used to for sure!

Heat sensitivity:  Please don't let me get hot or overheated.  It makes all my symptoms 1000 times worse and it takes me hours to recover from it.  This is the main reason why my hubby bought me a car that I can start from inside my office, so I can have that temperature at a cool 67 degrees before I even open my car door during the hot Utah summer.  Life.Changer.  Heat sensitivity also makes working out a challenge.  I have two fans going when I ride my bike plus the little one on the bike.  I still feel completely drained afterwards.

Dizziness & Vertigo:  Sometimes my head just starts spinning and I feel like I'm going to pass out.  I keep my hubby's phone number on my desk at work because I'm afraid someone will find me on the floor one day.  I can't walk and look up or over to the side at the same time... I'll usually lose my balance.  Also, don't ever ask me to do a walk and turn sobriety test.  I have never had a drink in my life but I will never pass that heel to toe walk in a million years.  Nine steps?  I can't even take two.

Vision Problems:  I can't read anything at all without reading glasses any more.  I need to make an eye doctor appointment soon.  That's all I'm saying about that.

Eye Pain/Headaches:  I get shooting pain behind my eyes and up in my head.  It sucks.  The eye pain sometimes increases if I CLOSE my eyes.  Sometimes when I'm sleeping the pain wakes me up and I have to physically open my eyes to get it to stop hurting.  Florescent lights can make eye pain and headaches worse.

Depression:  I have had depression for a long time, however, it has intensified 10 fold the past two years.  I take daily meds for depression and anxiety and still struggle sometimes.

Shot's:  I take a few meds daily, but three times a week I get to have a shot before bed.  Don't get me wrong, I am very grateful for meds!  The shots slow down the disease progression, however, I am afraid of shots in general and this medication stings going in.  I then have flu-like symptoms for hours after as a side affect.  I usually take pain meds and try to get to sleep quickly so I can mostly sleep through it.

Ok, that is about all of the symptoms I'm willing to share at this point. 😉

At the end of the day what MS has taught me more than anything, and what I would like to share during this awareness month, is to try to always be kind and not judge others, because you really never know what kind of battle someone is fighting.  Even if everything looks totally fine on the outside.

This is MS.

January...

It's the New Year and there are lots of things I love about New Year, but you know what I don't love?  New pharmacy benefits!  I know, I know, I should be grateful that I have health insurance!  But when you take meds that have to be ordered and shipped from a specialty pharmacy and which require pre-authorization, trying to get that all switched over in a matter of a week or two can be quite the stressful experience.

I had gotten a letter telling me everything would be automatically switched from the old specialty pharmacy to the new one back in December... a smooth transition, they said.  I started the ordering process on January 7th... a good week before I ran out of my shots.  I did everything they told me to do in the letter they sent me!  Got online and created an account, gave them the medicine info and my doctors contact information if there were any issues.  I got the confirmation email from the pharmacy thanking me for sending them the information and letting me know "The next step is ours" and "we will contact you at xxx-xxx-xxxx if we need anything else..."

Two days later I still hadn't heard a thing, so I decided not to risk it and followed up with a phone call.  They promptly told me they didn't have anything on file for me and I didn't have an account with them yet. 😐  We started all over... I spent 15 minutes on the phone with them giving them all the exact same information again.

Two days later I still hadn't heard a thing.  Then started the insane calling chain.  We have the prescription, we don't have a prescription, we have the pre-authorization, we don't have the pre-authorization.  Back and forth on the phone EVERY DAY.  Calling the insurance, calling the new pharmacy, calling the Dr's office, calling the old specialty pharmacy... Finally come January 18th, they had everything they needed and they processed my order to be overnighted!  I had only missed one or two shots by this time so we were good.  However, later that night I got an automated message at 7:30pm that told me the shipment had been stopped.  I called back again and was told they didn't have the pre-auth again at which point I pretty much lost it as I told my hubby, "screw this, this is more stressful than having the actual disease!"

I finally caved and called MS-lifelines, the helpline run by the drug company who manufacturers my shots and who have the best people working for them who helped me last time I had issues.  I felt stupid for not calling them earlier, but every other day they had told me we were good, so I kept thinking we were fine.  Gene, the amazing woman who usually helps me wasn't there, but another sweet lady, Tanisha, took all my info, calmed me down, told me everything would be ok and that Gene would be on it when she got back in the office.  She also told me not to stress because I would not have to start over with the titration packs until being off the meds for 3 weeks. 

Thanks to Gene everything got sorted and I finally got my meds shipped out on the 24th to be delivered the 25th.  Hallelujah!  As a note, that same day I got a letter dated January 18th from the Specialty Pharmacy stating they had my pre-authorization and it was good through 2021. 😒

The next day I went to pick the meds up from the pharmacy they had been shipped to and guess what, they weren't there. 😅 Seriously people, it's like they are TRYING to kill my sanity.  I checked the tracking and UPS had been delayed somewhere and the delivery was rescheduled for Monday.  Hey UPS, these are refrigerated meds.  They can't be delayed that long or they are compromised!  Back on the phone with the specialty pharmacy who thank heavens called UPS and had them deliver them Saturday.  (Hey, what was one more day at this point.)  When we finally had them in our hands on Saturday, Mike and I just looked at each other with a mix of relief and unbelief... It felt like we should have a major celebration but we were both too mentally exhausted. 😂

And that my friends, is why I hate January. 😘

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!