Traveling with MS

This is my first post since Friday. I've been traveling for work, so I didn't really have time to do much else. Our company flew the entire Executive Team to Las Vegas for our annual summit; we arrived on Sunday and left Tuesday morning. Although we were busy with work events much of the time, we did have a little free time, which I used to get in some naps. 

This is the first time I've flown since being diagnosed, and it was hard.

Two of my worst symptoms are vertigo and dizziness, and the flight and stress of travel brought those to the forefront. Add in the dehydration that tends to occur when you fly anyway, and I was not a happy camper on that plane. I tried to drink as much water as I could, but it just wasn't enough, apparently. I ended up being so dehydrated on Monday that I barely urinated until late afternoon, despite drinking gallons of water all day. The increase in vertigo also caused me to struggle with take off and landing...I felt like I was literally going to hurl (cue the deep breathing exercises).

I also dealt with a headache that hung around (and is still around today)...it came and went, varying in intensity, over the course of the 3 day trip. And pain meds didn't really help.

My facial nerve symptoms (pain, heat, fullness) were horrendous while flying. NOTE TO SELF: Take my cooling towels with me the next time I fly. They would have helped tremendously, but they were in my checked bag...where they didn't do shit. 

The leg and foot weakness, heaviness and occasional numbness was, naturally, an issue with all of the walking. Even the jaunt from our room to the meeting room was more than my body needed at that stage, and I HATED that this was the case. How the hell did I go from being able to complete two obstacle course races in one weekend, to now barely being able to walk 1/2 mile without feeling like my legs have had enough?? It is so incredibly frustrating to be experiencing these limitations, and to have what was supposed to be a fun, beneficial summit turn into an "I-can't-wait-until-this-is-over" trip. I couldn't wait to get back to my room and sit down, lie down, sleep, etc. My diet sucked, too, because it was Vegas, and I paid for that in terms of additional inflammation from sugar, excess dairy, unhealthy fats, etc.

Between the issues with flying, my utter exhaustion, my headache, my nausea, my jello legs, and my facial issues - I felt like my body was being pistol-whipped.

Don't get me wrong - It was so wonderful of our company to give us such an incredible trip. They paid for us to stay at The Bellagio, one of the nicer Vegas casinos; they paid for our flights, and they gave us spending money (quite a lot of it, actually). They fed us with great meals, took us to see a show (Pen & Teller - AMAZING!), and gave us a great meeting with some good information to take back home.

But, as I said in a prior post, having MS is about learning your own body and how it reacts to things, and how your symptoms manifest - what are your triggers, things that make your symptoms worse. I'm having to learn (reluctantly) how to conserve my energy in small ways throughout each day, so that I don't end up paying for overexertion later.

Note for Non-Ms'ers - Overexertion for someone with MS doesn't look like overexertion for someone without MS. It's different for every person, and may be as simple as sweeping the floors, cooking dinner, or doing laundry. Sometimes, that's enough of an energy drain that we have to take a nap or sit for an hour or so to recharge. Our energy banks are all a different size and shape, and I have to watch mine constantly. I'm not always very good at listening to my body...I tend to push myself too hard most days. But I definitely need to be better at managing my "energy output" a little better...and not being afraid to ask for help when I need it.)

LESSONS I LEARNED

• Stay hydrated
• Easy on the processed sugar and unhealthy fats
• Don't be afraid to say you need a break, or ask for help

Fellow MS'ers - Any tips for travel? Our family lives in Maryland, and we live in Texas. We love it when we get the chance to visit, but I don't want to feel miserable the whole time. Have ya'll found any good strategies for minimizing the impact of your symptoms while traveling? 

How MS Makes You a Mom Boss (or "This part's not very fair, ya'll...")

MS is a disease that is most often diagnosed in young women, when they're in their 20's-30's. We don't really know why this happens, but it does. Oh, they've done research - a lot of it - to try to figure out what causes MS. Because if they could figure out what causes it, they could figure out how to cure it. And we're just not there yet. (Remember those "promising clinical trials" from my last post?)

Anyway, one of the things that seems just a little unfair to me about this whole timeline is the fact that most women in this age range are either thinking of starting families, in the process of starting families, or already have one or two or four little people running around their homes. Women can still get pregnant, and have perfectly healthy babies, even WITH their MS. And, although having a first-degree relative with MS does increase your likelihood of developing the disease, it isn't hereditary. 

But we still have babies to raise...

Corey and I decided, after Eli was born, that we were done having kids. I was very sick, through most of my two pregnancies, and my children were large (8 pounds, 11 ounces and 10 pounds, 4 ounces). When Eli came out, the doctor said "You know, they typically get larger as you go..." as though it was funny to him. Yeah...no thanks. I'll stop while I'm ahead. So, although we're done having kids, I still have two very young ones to raise. I'm looking down the pike at the next several years of getting kids to school, packing lunches, attending school functions, going to the park, giving baths, reading books, and on and on. I'm not doing it alone. I got my main man helping out every day and every night. His mom, who we call "MiMi," came into town last week to surprise me, and she stayed for a week helping us out with kids, errands and housework. It was such an amazing break for me, even though I wish it could have lasted much longer. 

When you're dealing with a disease like MS, there is literally no telling what the next year, month, week, day or hour will bring. I have experienced so many changes since this past summer, and I don't know, from one day to the next, how I'm going to feel when I wake up, when I get to work, when I get home from work...and I usually feel my worst at night, when the kids need me the most. 

There is something that happens to a mother when she knows her children need her...and, to be fair, I believe fathers do this as well. (Note: Contrary to society's claims, not all dads are useless and lazy..many of them are amazing fathers, my husband included.)

We can be absolutely, horribly, utterly exhausted...to the point of near-collapse. Our bodies can be filled with pain, our eyes bloodshot from lack of sleep, our minds full of uncertainties and anxieties. Yet when we know our babies need us - something happens. 

Now, I'm not gonna go all crazy and say we get "supernatural energy bursts" or some nonsense..hell, I'm still worn out when I'm giving my son a bath. I don't suddenly get a burst of anything except maybe some extra nerve shocks in my feet and a few more waves of fatigue while I'm making Lily's lunch at night. 

But we get it done. Because that's the only choice we have. Sure, we'll have those nights when we give the reigns to someone else when it's time to read the bedtime story, or we let our kids buy lunch at school because we're just too damn beat to make it at home. But, most of the time, we just shuffle through those rough days and nights, making it work. Or we give them an Amazon Kindle and let them snuggle up next to us for an hour (or two or three) of screen time, much to the pediatrician's chagrin. That's what Eli did today. Then, later, he "cooked" me "dinner," which consisted  of a plate of wooden cakes and a plastic french fry with imaginary ketchup. I was supposed to eat the ketchup first, I think. 

I constantly hope for a good day...or at least for more GOOD days than bad. I work through these symptoms that I deal with every day, trying to figure out how to conserve energy and avoid triggers that make things worse. Thankfully, my husband is almost always there to pick up when I absolutely CAN'T do it. But when he isn't, or when I just don't want to ask...when I want to be the one reading the story, or giving the bath, or making the lunch...then I drag my uncooperative feet across the floor and do it my own damn self. 

Because that's just what we do...

This Is Not a Test

I guess I always had this thought, in the back of my mind, that it could all just be something else. I mean, if you do your research about brain lesions and neurological symptoms, you come up with a myriad of causes - migraines, medication reactions, fatigue, stress, viruses. I just figured, "Hey, the number of possible causes for brain lesions probably outnumbers the amount of people who actually HAVE them, so I'm sure it's just something else..."

After all, my first neurologist wasn't convinced it was Multiple Sclerosis. He thought my neurological symptoms were the result of a Humira injection (just one, single injection) that I had been given following a clinical diagnosis of Ankylosing Spondylitis. He said he had TWO WHOLE PATIENTS who had reacted that way, and their issues had resolved eventually. He was sure, since I had no active enhancing lesions, that my symptoms would resolve, too. He was even more conflicted after my Lumbar Puncture results came back showing no oglioconal bands or Myelin protein in the spinal fluid. I had other positive results, though, so he opted to be "safe" and send me to an MS Specialist for their opinion on the matter.

(Cue the LOOOOOOONG wait time for a specialist visit at University of Texas Southwestern MS Clinic.)

Then, on January 4th, I sat in a cozy little exam room with my husband and Dr. Shanan Munoz, a neurologist with 26 years of experience diagnosing and treating MS, and heard her say, "This is all classic MS."

Classic MS.

The lesions. The symptoms. The facial nerve pain. Dropping things. Leg weakness and heaviness. Memory loss. Problems speaking. Dizziness. Fatigue.

It wasn't the result of a Humira injection, and I've probably had it for a while.

"You have Relapsing Remitting MS."

It's not something else. Your symptoms may lessen, and steroids may help on occasion, but the neurological issues you have now likely won't go away.

You'll always have to write things down so you don't forget to do things.

There is no medication for the skin numbness (which is apparently called "paresthesia") you feel during intimate moments with your spouse.

There is only a 52% chance that the medication we're going to use will prevent current lesions from growing, or prevent more lesions in the future.

There's no cure, but they're working on some things. Clinical trials are "promising."

"But, hey," she said, "This isn't going to ruin your life. Your prognosis is good. I have MS patients who ride 150-mile bike rides, in the heat."

The rest of the visit I felt almost numb...and I continued to feel that way in the weeks following. Like I'm walking around in a fog. Like this isn't my body anymore. Like I've been taken over by someone I don't know, an alien invader, a body-snatcher.

It's been 22 days since I heard her say these words to me. I've had issues with nerve pain medication, followed by a flare that put me at the Urgent Care clinic getting a Sodium/Steroid IV and taking Prednisone for 9 days. I've gotten approved for Gilenya and that whole process for starting the meds is in the works. I've done research...bought the book "Multiple Sclerosis for Dummies." We've talked to our daughter, who is 8. I'm not sure how much she understands right now, but we'll get there.

These days, I'm still not sure how I feel about it. I guess it's a mix of feelings...numb...angry...and confused. The absolute picture of health - competitive athlete, healthy diet, plenty of rest, great family support system - freaking Certified Personal Trainer. And somehow, this beast of a disease, this brain-eater, found me. I still don't get it. I don't like it. And I don't really feel like sitting down and letting myself process it and accept it. I'm just in survival mode. I can't let myself think about the future - like what might happen if MS jacks with my eyesight, or causes incontinence, or causes me to lose function in my legs, or arms. What if I start having seizures? What if I'm in that small percentage of people who take Gilenya and get a serious brain infection? What if any one of these things happens and my kids don't see me as the active, involved mother I am right now? How will their little brains process it?

These are the thoughts I can't think right now. So when they pop up, I quickly push them far away into the recesses of one of my lesions and bring my mind back to what I'm doing in this moment.

But I know what I DON'T want to do right now. I don't want to walk around singing with small animals in the forest like freakin' Snow White saying, "La-la-la, my life isn't OVER! I'm going to live a wonderful, amazing future, because the doctor said I would!"

I want to sit here, processing (or refusing to process it) just like I am for now.

This isn't a test. This isn't a false alarm. This is real shit, ya'll. And I'm gonna take my time working through it...

EK