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. 😘