I started my day as I will always do on July 9: Remembering our lost loved one. I woke up early and tried to think of something to say on Facebook. Mostly because I always want to share the video slide show I made after his passing. I always want to remember his smiling face and how he made people light up.

I then got ready for the day, and Randy and I headed to Montrose Harbor for the Miles for Melanoma 5K. It is a walk/race that Team Z (aka Truckin’ It For Tom) has participated in since 2013. It is our fifth Miles for Melanoma. While we still feel Tom’s absence and a sense of sadness, as each year passes we continue to come together for a good time. And that’s exactly how the day went.

The weather was lovely. (It has downpoured in the past.) The company was fantastic, as always, with old friends, new children and new pets brightening the day the way Tom would be doing. The small picnic after the walk was fun, as well, and we eventually parted ways to prepare for church.

We attended mass at the church Tom grew up going to, and he was named in the mass intentions. After the service, we went back to Tom’s mother’s home and kept the good times going into the night.

I can’t say enough about this group and the joy they have brought to my life. And I don’t have to wait long to see them, as Tom’s annual birthday picnic is coming up next month.

We’re livin’ for a good time, Tom!

Not familiar with Walk MS? Well, let me fill you in. Straight from the National MS Society website: “Walk MS helps us team up with friends, loved ones and co-workers to change the world for everyone affected by MS. Together, we become a powerful force. And with every step we take, every dollar we raise … we’re that much closer. Together, we will end MS forever.”

I had not been feeling well this past spring. Fatigue has been a huge issue. It’s a different kind of fatigue. I’m not sleepy, and I’m not exhausted from exercise. My body feels weak. Heavy. Sometimes I physically can’t bring myself to shower or leave the house. That said, I wasn’t sure if I would be able to participate in Walk MS this year. But at the first sign of improvement, I signed up and asked friends if they would like to join.

Although it was last minute, many friends came out to support me and the cause. And many more supported my fundraising efforts as well. I raised more than $1,000! As a thank-you, I brought some orange shades (orange is the awareness color for multiple sclerosis) to the walk. Hopefully next year I’ll sign up earlier and we can plan for shirts or matching outfits or something fun.

Keep an eye out for Team Keep Calm And Carrie On in 2018!

The main reason for this post is because we are doing something I never thought we would do. At the advice of my mom, we’re hiring a wedding planner.

Most people who know me well know that I’m a party planner. An amateur party planner, but a party planner nonetheless. I’ve had enough themed birthday parties (as an adult!) for people to see just how much I enjoy paying attention to the smallest details. I am also enjoying the wedding planning process. We have a theme, we have purchased bits and pieces of décor, I may or may not be driving my fiancé a little crazy with my ideas. But there’s one thing I can’t plan for – my disease.

We’ve hired a wedding planner!

Stress isn’t good for anyone, but it is especially burdensome for people with MS. My symptoms worsen when I’m stressed, and there’s no telling if a relapse will rear its ugly head. That’s the reason we’re hiring a day-of wedding coordinator. And she’s amazing.

Our wedding planner’s name is Kristen, and she is the owner of Everlasting Impressions. Our photographer recommended her. And we LOVE our photographer, so I thought I would give her a call. We met her on a rainy day to find out more about her services, and I instantly knew I wanted her to be involved in our wedding.

My mom has volunteered to remind me when to take my medication (I take a pill four times a day), but I don’t want her (or me!) to have to worry about table numbers, escort cards, the card box, etc. Kristen says she’ll take care of all of that … and more!

I definitely plan to write more about the experience of hiring a wedding planner, but I’m going to wait until after we’re married. However, I can’t even begin to tell you how relieved I already feel knowing we are in such good hands.

Back in December, Randy and I planned a trip to New York, one of my favorite cities to visit. And while I always know I have to be prepared for some nerve pain and a potential flare up, I didn’t think about what Mother Nature might have in store for us.

We were scheduled to fly out early Friday evening. Early in the week, the forecast called for snow. And anyone who has flown Southwest before knows the airline is notorious for cancellations at the first sign of precipitation. Needless to say, as snow began to fall Friday morning I kept tabs on our flight for which seemed like every couple minutes. And after one of the many times I refreshed the page, CANCELLED flashed across the screen.

I immediately called the airline to inquire about rebooking. The customer service rep was very patient with me, a now panicked woman, and she politely told me she could get us out on the same flight the next night. The only problem was that I purchased tickets (really awesome tickets) to a star-studded Broadway play that was showing for a limited, two-week engagement. So…this idea wasn’t going to fly.

I then asked about flights from nearby cities in Indiana and Wisconsin. Everything in Indiana was booked, but there was room on the first flight out of Milwaukee on Saturday morning. Without hesitation, I said, “Book it!” and I then had to quickly figure out the rest of Plan B.

I hung up and told Randy the plan. I’m incredibly lucky that 1. he was game and 2. he was super patient with me. I began searching for hotel rooms near Mitchell Airport in Milwaukee. Done. Randy then drove me to a car rental place two minutes from my house. He then drove home while I finished packing. I picked him up and we were off to Milwaukee! Driving into the snowstorm!

I forgot to mention that the rental was a VW Beetle. But let me tell you…that baby was a tank in the snow! Even in the hotel parking lot, where the plow pushed all the snow up against the back of the cars, we were able to get through piles of snow with now problem.

We eventually got to New York, with little time to spare, before we had to get to the play. We also had plans to meet one of my college roommates for dinner and then head to Rockefeller Center to see the giant Christmas tree. I’ve never been in New York for the holiday season, so it’s something I have always wanted to do. Plus, I thought it might be nice to go when it wasn’t so crowded.

The tree was off…oops!

It was after 11pm on Saturday when we finally headed to Rockefeller Center. As we approached, we saw the tree. And it was…OFF! Seriously?! I didn’t know they turned the lights off! But the trip to Rockefeller Center wasn’t a total loss. On the way back, we saw a small crowd waiting outside 30 Rock. Then it hit me: They were waiting for SNL cast members! That’s when I spotted Bobby Moynihan. I waited patiently as he obliged fans with signatures and selfies. And just before he got into a car, I asked for a quick photo.

The next day, we planned to get lunch in Chinatown at our favorite place. Which is under new ownership. Thankfully, the food was still the same. And even though they took ALL the dollar bills off the walls that had been taped up over the years and repainted the interior, the atmosphere was still the same. They still allow patrons to put dollar bills on the wall, so we added two!

We then went back to the hotel room, and I called my mom and sister while waiting for Randy to take a quick shower before we headed back out. I now know they were expecting to hear some news from me, but I simply called to pass the time. I told each of them about our Christmas tree fail and how we planned to go back to the tree before the Rangers game at Madison Square Garden.

This time, we got to Rockefeller Center and the tree was ON! Of course, there were people everywhere. We started walking around the tree and taking selfies. At one point, Randy suggested I hand my camera to someone. My first thought was, “There’s no way I’m handing my nice camera to a total stranger in front of a ‘tourist trap.'” So we kept walking around until eventually we spotted a family.

One. Incredible. Moment.

Randy suggested we hand the dad his phone to get a better picture of us. The dad was happy to oblige and began snapping some pictures.

“Can you take one more?” Randy asked.

Snap!

“Can you take one more?” Randy asked again.

Snap!

“Can you take one more?” Randy requested a third time.

“I think we have enough photos!” I said.

Then he got down on one knee and said some of the sweetest words about our nearly nine years together. As he spoke, he pulled out a beautiful ring, presented it to me and asked me to marry him.

We still had to go to MSG! And that was also thrilling. The Rangers beat the New Jersey Devils 3-2 in a shoot out. But, honestly, nothing can compare to that moment in front of the Christmas tree in Rockefeller Center. What started out as a crazy trip full of the unexpected ended with one of the best memories I’ll ever have from being in New York.

From my Hawks-themed 29th birthday party.

Let me start by saying I’m a Chicago Blackhawks fan. Most people know that. It just so happens my 29th birthday party in 2014 was called “Carrie’s Bickell Birthday.” Bickell wore No. 29 when he played for the Hawks for nearly decade. So when I decided to have a Hawks-themed party at age 29, it only made sense that it was named after the player who wore No. 29.

But I digress…

Back to Bickell. Toward the end of his time with the Hawks, Bickell suffered from what was described as vertigo and missed several games. According to Chris Hine from the Chicago Tribune, recently Bickell woke up one morning and discovered a shooting pain in his shoulder. After a few days, he felt the same pain down in his leg and he knew something was wrong.

Writes Hine: “After Bickell underwent various tests, doctors informed him he has multiple sclerosis, the disease in which the body’s immune system attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves.”

Bickell’s doctors told him they discovered the disease early. That’s a good sign. To me, that means he must have relapsing/remitting MS and that at some point, with the right medication, he will have fewer relapses. I can’t pretend to know how he feels or what he thinks about all of this. It’s different for everyone.

For me, I always have pain. But it is managed with a daily medication. Fatigue is an issue, but I’m not a professional hockey player. I haven’t even played an organized sport since high school, unless you count recreational softball. But it’s not like that’s as rigorous as the NHL.

In 2012, another NHL player was also diagnosed with MS. Former Minnesota Wild goalie Josh Harding noticed issues with his neck before he was diagnosed. He continued to play hockey, but he broke is foot in the off-season was assigned to the Wild’s AHL affiliate for the 2014-15 season. After just two games, he decided to retire at age 30.

Bickell will be 31 next year. I know there’s no cure for our disease, and it will progress as we age. But it is my hope that someone as strong as him will be able to fight and keep playing a little while longer. I hope he can get back on the ice. And when he does, I’ll be cheering for him.

I went to school like any other day. I was sleepy and shuffling through classes when I landed in Chorus, second period. At some point, we were told to stay in our classrooms. We remained in second period for an unusually long amount of time. We were told very little about the attack on our country, but once we were released to finish the rest of our school day we learned more.

By the time I made it to history class, we began having a discussion. We begged our teacher to turn on the TV, but she wouldn’t. So we continued to discuss what happened and talk about other bits of our country’s war-torn past.

When I finally got home, I went to my friend Sara’s. She lived across the street from me. We watched the news for hours until my mom called me home, where I continued to watch the news.

I took this photo of Ground Zero from a bus in July 2002.

I did not know anyone who passed away on 9/11/2001. That doesn’t mean that I don’t have empathy for all of the families, friends and co-workers who lost loved ones that day. Or that I don’t mourn for everyone who lost their lives. Of course I do. But I don’t pretend to know what life is really like for them. All I know is, I will never forget that day.

New York is one of my favorite places to visit. I went to college there for a brief time, I still have friends who live there. It’s like a second home.

My first trip to New York was in July 2002. I was 17 years old. It was part of the National Student Leadership Conference, what you might call an academic summer camp called, that I planned to attend in Washington, D.C. We had the option to spend four days in Manhattan first. I had wanted to visit New York since I was 12, so I did. We saw sights like Ellis Island and Times Square. The Statue of Liberty was still closed, but we saw it from a distance while in Battery Park.

On our way to dinner at Pier 17, we drove by Ground Zero. With the events of 9/11/2001 still fresh in my mind, I thought of those lives that were lost as we drove by. And during the remainder of our trip, I thought of them at every turn. How could I not? Like I said, I’ll never forget.

It just so happens that my life was changed in a different way on 9/11, last year.

I was diagnosed with MS on 9/11/2015. It has been a year since that day. I have been receiving Tysabri treatments since October 2015, and I have been taking gabapentin to manage my symptoms.

People ask, “How are you feeling?” The honest truth is that I have good days and bad days. There are days when I can walk two miles, maybe even a jog a little, and still have the energy to cook a meal or hang out with friends. But then there are some days I can’t bring myself to leave the house, much less get out of bed.

I am no way saying that what I am going through equates to the loss so many experienced 15 years ago. What I’m saying is that I’ll never forget what 9/11 means to me for several reasons. First, I will always remember those lives lost in 2001. Second, I’ll remember my grandparents’ wedding anniversary: 9/11/1929. Lastly, I’ll think of the day I was diagnosed with MS. I’ll never forget … any of it.

This sentiment is echoed across the internet to raise awareness for a number of causes. Replace “MS” with cystic fibrosis, melanoma, breast cancer or diabetes, to name a few, and you’ll find a number of events held throughout the year to raise awareness and funds to fight for the health of the many afflicted with these life-altering diseases.

Knowing so many people affected by so many different health issues, it’s difficult to support all of them with a physical presence, a monetary donation or even a simple social media post. But any thing you can do is greatly appreciated and is not taken for granted.

Today – May 1, 2016 – would have been my first MS event as someone who has MS. However, I was the maid of honor at my best friend’s wedding yesterday, and going all in on her special day was the most important thing on my mind this weekend.

Fatigue has been one of several major issues I have had since I was diagnosed last year. I typically need to pick one day in the weekend to be active. Of course, pain is a factor. But being physically exhausted is a new phenomenon I’m still not used to. However, I refuse to accept that my life will be bogged down by my limitations. Especially when they inevitably become worse.

How many times have I quoted my friend Tom? “You live for a good time, not a long time.” That’s exactly what I plan on doing. And what’s wrong with spreading a little awareness along the way?

It has been a while since I wrote my last blog. I wish I could say that I have been busy with work and planning an epic bachelorette party for one of my best friends, but there’s more to it when explaining my absence from the blogosphere.

While I have been getting better with each passing month, there are still certain pains that came with my first official “relapse” that have not gone away.

According to the International Association for the Study of pain, “Pain in multiple sclerosis is both a direct consequence of a demyelinating lesion in the central nervous system (central neuropathic) or an indirect consequence of the disability associated with MS (nonneuropathic).” In other words, what I have experienced these last few years is literally all in my head … and lungs … and spine.

The first time I experienced pain was in 2012 when I had blurred vision in one eye. When I glanced left or right, moving my eyes side to side, I felt a dull pain. From looking at a brain MRI, the doctor diagnosed optic neuritis.

After months of prednisone treatments, my vision eventually cleared up (mostly). Although, to this day I don’t know if it was really the steroid or time that allowed my body to heal. But in October 2012, I experienced what I thought was thrush, an infection in my mouth . The best way I could describe it is I felt as though there was a jalapeño on my tongue 24/7. And nothing made it feel better.

I went to the dentist and the doctor, who both confirmed I did NOT have thrush. But what was it? Back then, we didn’t know. And although I think now that it was likely the result of one of my many lesions inside my body, I guess I can’t prove it retrospectively.

Fast-forward a few years to my diagnosis (September 2015), and that’s when I experienced many new pains: the MS Hug, pins and needles, and one pain that doesn’t really have a name.

I’ll go into more detail about these three particular pains another time. Honestly, sitting here after a long day of work and trying to blog is simply exhausting. I’m feeling the same way I felt recently boarding a Metra train to return home after an appointment in the city.

Struggling with chronic pain, I’m not at a point where I need a cane. But standing for long periods of time can be a challenge. Especially if it’s warm outside or warm inside on a crowded train. Then the pain is a bit more intense. At any rate, the train was getting full. Panicking about the thought of having to stand, in pain, for about an hour, I rushed to find a seat.

I must have looked crazy, half stumbling and sweating profusely. I got some side-eyes and heard some whispers after I finally found a seat and proceeded to rip off my winter layers, whip out a water bottle, and dampen a wad of Kleenex to cool myself off in an effort to bring my symptoms to a manageable level.

My point in telling this story is that the pain people with MS experience is insufficiently recognized. That happens when people are quietly suffering and you don’t always see what ails someone with MS. So, please remember these words I once read: Be kind, always. People are fighting a battle you know nothing about.

Photo courtesy http://nutritionw.com

Let’s start with vision.

I’m fascinated by my dilated pupils.

Issues such as temporary loss or disturbance of vision are common in MS. Imagine sitting down to watch a Hawks game on TV. During intermission, someone does something to get your attention and your glance moves away from the TV toward the noise.

Now imagine that every time you move your eyes in a different direction, that movement is accompanied by a nagging pain that’s not quite as bad as a headache but still annoying enough that you might even say, “Ouch!”

Now let’s say Jonathan Toews is being interviewed in between periods so you’re focused on the TV again. But this time, you notice something is off. You’re not quite sure what it is, exactly, until you realize one of your eyes is bugging you. You close the other eye for a moment as a reaction and notice something. One moment, you’re looking at Toews with both eyes open and see a crystal clear image. Then one eye is closed and you can’t even see him in the center of the screen.

Welcome to optic neuritis, one of several conditions someone with MS could endure. Full disclosure: Watching a Hawks game isn’t the way I discovered something was wrong. Actually, I was in a car and trying to focus on the overhead exit signs. But, I digress.

Here’s a more detailed description of optic neuritis, according to the National Multiple Sclerosis Society…

And here’s another description of the symptoms, as described by Mayo Clinic…

After suffering from vision problems on and off (the issues cleared up on their own in the beginning, and then again when I was on a heavy dose of steroids), at one point my ophthalmologist told me “there is permanent damage in one eye.” My right eye to be exact. And because it’s nerve damage (more on that another day), there’s no repairing it.

For now, the damage isn’t severe. If I cover my left eye, I do notice a small spot while concentrating on an object with just my right eye. But after a few seconds, I can see a little better. And, I can see normally with both eyes open. So I think being a pirate is something I won’t be considering anytime soon.

Still talking vision…

Another vision issue many people with MS experience is a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever. Anything from summer fun to exercise to a hot shower can trigger blurred vision.

This phenomenon is known as Uhthoff’s sign, so named after German ophthalmologist Wilhelm Uhthoff. Paging through “Multiple Sclerosis: The History of a Disease” by Dr. T. Jock Murray, I found out several interesting facts about Uhthoff’s discovery in the late 1890s…

1. He reported 100 cases of optic neuritis, and noted that three of them had desaturation of color vision with exercise and fatigue.
2. Little attention was paid to this phenomenon for years even though other cases of visual blurring with exercise or hot baths were noted and recorded.
3. Uhthoff noted that the blurred vision some of his MS patients endured came on on about 30 seconds after exercise started; it then stopped a few minutes after the exercise ceased.

And, for good measure, here’s a quote I liked from the book: “Patients have often noted improvement in their vision after drinking ice water or cold beer or after getting into a cool swimming pool or lake.” To that I say….. #truth

I have experienced this symptom and dealt with it often, even before I was diagnosed with MS. During a workout, after a shower, in the summer, bundled up in the winter…my vision gets blurry. But once I cool down, boom. Back to normal.

When the vision issues are at their worst, they are frustrating. But it’s not always so bad. Perhaps it has become a way of life for me since I have been dealing with heat sensitivity for a while. Or, perhaps I’m focusing on other symptoms. Either way, there’s still a lot to cover when discussing this invisible illness. And I’ll do so in the next couple posts. Stay tuned!

That said, I’ll try hard to blog a bit more and tell even more of my story. Explain the types of tests I’ve had in the last four years, talk about my experiences stumbling (sometimes literally) through life, and spread awareness about the complexity of diagnosing, treating and dealing with the disease.

Rather than bore you with another chronological timeline, though, I’m going to write about whatever pops in my head. And today? It’s the spinal tap.

I don’t mean the rock mockumentary that came out a year before I was born. I’m talking about the actual lumbar puncture, where a needle is inserted between two lumbar bones (vertebrae) to remove a sample of cerebrospinal fluid (CSF). That’s the fluid that surrounds your brain and spinal cord to protect them from injury. This test can help diagnose brain/spinal cord disorders, including multiple sclerosis.

Sounds like a fun time, no? Here’s what happens…

1. You are asked to lie on your side with your legs pulled up to your chest and your neck slightly bent forward (aka the fetal position).

2. The doctor then feels around your back to locate the space where the needle needs to be inserted. Once the area is identified, it is sterilized and then lidocaine (a numbing medication) is injected to numb the area completely.

Image courtesy Booster.com

3. The needle is then inserted into the lower back, either between the third and fourth lumbar or fourth and fifth lumbar level. I was told at the time that being in the fetal position allows the vertebral spaces to open more widely to make needle passage easier. I was also told that, while it wouldn’t hurt, I might feel pressure. And, honestly, I felt a ton of pressure. TMI, I know, but it almost feels like you have to poop…but that pressure is in your back. It’s the craziest sensation, and it’s not comfortable. Never mind that I have a needle inserted into my back. But this procedure happened while I was admitted for a weekend at a teaching hospital, where several other residents (all male) watched the roughly 20-minute procedure as my backside was out for everyone to see. I had underwear on but still…embarrassing.

4. Back to the procedure: The fluid drips at its own slow-as-a-snail pace into a series of three or four vials that are then sent to the lab for evaluation.

5. Accordning to the National MS Society, “The CSF of people with MS usually contains elevated levels of IgG antibodies, as well as a specific group of proteins called oligoclonal bands. Occasionally there are also certain proteins that are the breakdown products of myelin.”

Feeling squeamish yet?

How about this….I’ve had TWO spinal taps. And the second one, which was done as an outpatient service, was even more uncomfortable.

I was in a small room with two female doctors, which put me at ease. The uncomfortable part was that the resident was having trouble positioning the needle, which increased the pressure and made my feet tingle constantly. It also made the procedure last longer than usual.

However, the one good thing I can tell you is that I didn’t get a spinal headache. And I hear those can be excruciating. I was asked to lie as flat as I could for about 20 minutes right after the procedure, to recline on my way home and to lie flat again as soon as I got home for a couple of hours.

In the end, neither spinal tap led to a diagnosis for me. But that doesn’t mean they haven’t been helpful for others. The National MS Society says that some 5 to 10 percent of patients with MS never show these CSF abnormalities. I guess I’m the minority, but it’s helpful to know that the test can be beneficial for so many others…not to mention those with other disorders and infections.