Monthly Archives: July 2015

Relapse

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The thing about MS that is most frustrating is that it is so unpredictable in nature that it often just knocks you off your feet (literally!). If you’ve been following my blog for some time, you already know that in the last two years my life has completely changed when a particularly bad relapse took me by surprise, eventually forcing me to end my beloved career as a teacher. 

In the time since the onset of that relapse (almost exactly two years ago), I have worked incredibly hard to reclaim my life. The first step was physical therapy, followed by cognitive therapy. I pushed myself to first get up and about, ambulating without assistance. It was a grueling process, but I was committed to it because I will not give up. Slowly I began feeling more like my old self again, but with more limitations than before, which seems to be the case after each relapse that comes along. I started taking advantage of the resources available to me, including exercise classes offered through the MS Center as part of their wellness program, and my instructor was instrumental in helping me take back control of what was within my reach. She made me see my body differently than ever before, teaching me about postural and longevity moves as well as offering sound nutritional counseling tailored specifically for me.  As my body was brought back into alignment, I was able to challenge myself more and more, and amazingly, although not yet at the ideal weight for my body, I was feeling stronger and more optimistic than ever before.

This is the difference one year made!

This is the difference one year made!

Two weeks ago, I had a regular scheduled check-up with my neurologist. At this stage in the game, the best I can hope for is a stable exam. I know that without a cure, I won’t get any better, but if I don’t get worse then that’s all I can hope for. First neurological test: close your eyes with arms held out in front of you and touch your right pointer finger to your nose. Nailed it! Now the left pointer finger. Nailed it! Next up, analysis of my gait. Exactly the same as last time: wide based gait, very common for MS patients. Not bad! Tandem walk (heel to toe) was not great, but it never has been. I always have a positive Romberg Test, which sounds good but it really isn’t. During this test, the patient is asked to stand with her feet together, hands at her side, and then close her eyes. The test is positive if the patient sways or falls when the eyes are closed. Don’t try this at home, kids! And the icing on the cake came when I was told that there was no new activity on my MRIs. Like I said, it can’t get any better at this point in my journey. It was definitely a reason to celebrate. 

Until the day after I got results of my MRIs. Life with MS can change drastically in just 24 hours. Still riding the high from the day before, I was caught completely off guard when my entire body started vibrating. It started on the inside first. I felt like everything inside my body was shaking. I felt like my breathing was fluttery and my voice was trembly. Then the tremors started in my hands and arms. I asked my friends if my voice sounded weird because I was feeling shaky. They said no, but the tremors were definitely visible. Living with MS means that weird things like this are not unusual. But when these things persist for more than 24 hours, it’s not a good sign. I woke up the next two days still not feeling right, and on the third day, I saw my neurologist emergently.

This exam went way differently that the one just two weeks (to the day!) earlier. First neurological test: close your eyes with arms held out in front of you and touch your right pointer finger to your nose. Poked myself on the forehead! Now the left pointer finger. Almost lost an eye! My gait was wide-based and very wobbly. The tandem walk was a complete and utter failure. It was obvious to my neurologist that in the short time since that MRI two weeks ago, I have some new brain stem activity happening. I started treatment, and will follow up in a month, at which time he may order an MRI. Considering that my last relapse started almost exactly two years ago, I’m doing better than average as far as length of time in between relapses. 

Keeping my fingers crossed for quick results!

Keeping my fingers crossed for quick results!

MS is always hovering in the background of my life. It is a constant, and I am given little reminders every single day, even when I am in “remission”. I don’t remember life before MS anymore, and that’s ok.  I am always adjusting because “normal” changes practically daily. I have to be flexible about most things in my life, which is something I was never very good at before MS came along. 

Of course it sucks when relapses happen. Definitely! But it’s par for the course with MS. I know that I am way more powerful and healthier than I was two years ago, and I am in a better position to get back to “normal” than I was back then. Plus, now I have my MS family, and with them at my side I am inordinately stronger than I ever was without them. It’s just like the saying goes (adapted for my situation, obviously!): MS can’t stop me, it can only hope to contain me.  

This is the latest picture of my MS family.

This is the latest picture of my MS family.

MRI

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Before I was diagnosed with Multiple Sclerosis, I don’t think I really knew what an MRI was. I had plenty of x-rays in my time, and even a CAT scan or two. Of course I knew that the MRI is a diagnostic tool, but that’s about all I knew about it. I had one or two MRI scans done on my cervical spine at the onset of my symptoms because my primary care doctor initially suspected a pinched nerve. I had no idea at that time just how intimately acquainted I would become with the MRI machine! 

The MRI has come a long way since its inception, and it is an integral part of the process for diagnosing MS. I honestly did not expect to react the way I did when I was sent for an MRI of my brain. My first panic attack occurred when they attached what I now jokingly refer to as the “Hannibal Lecter mask”, a cage-like device that locks into place and keeps your head still during the scans. That didn’t happen when my c-spine was scanned! As the table moved into the tube, I squeezed my eyes shut and I am pretty sure I tensed up every single muscle in my body. I was definitely not prepared for the length of time I was going to be in the machine…cue panic attack number two! Then after what seemed like an eternity, the piece de resistance: they brought me out of the tube, and explained that they were going to give me an injection of dye (gadolinium) for the remainder of the scans. I have no idea why this pushed me over the edge. In my mind, the fact that they were injecting a dye made whatever was wrong with me somehow a million times worse. I had to pull myself together just to finish what was left of the scans. 

This is my usual MRI spot. It has moved locations through the years, and I have moved right along with them.

This is my usual MRI spot. It has moved locations through the years, and I have moved right along with them.

These days, my experience with the MRI is so much different, but I can still remember the fear and the panic of that day, and each of my subsequent MRIs early on. Many people liken the MRI tube to a casket because of how tightly encircled you are when inside. Then add the clanging and the banging and the bumps and the thumps and the vibrations. All of this can be totally overwhelming (especially when you add in the anxiety related to the results), but it’s amazing how used to it all I have become. 

I have done some of my  best work from inside that machine! When I was still working, I would compose lesson plans and create activities for my students. I would make mental lists for myself, all of which I would jot down as soon as I got out. If only I could have had a pen and paper in there with me! There is also something very soothing about the vibration of the machine and the patterns of the noises. These days, I can even meditate or nap during an MRI, which speaks volumes because I am not one who naps. 

Hm. I'm not sure that this was wrapped tightly enough, right?

Hm. I’m not sure that this was wrapped tightly enough, right?

This week, I had some routine MRIs of my brain and my c-spine. Scanning two different locations with and without contrast generally will take about an hour, and I was looking forward to a nap since I hadn’t slept much the night before. I sat through the usual questions about aneurysm clips and pacemakers, etc., and answered the same as I did on the intake questionnaire that I had literally JUST filled out. (I still don’t understand why I have to do both!) The technician repeated everything I already know and have heard over and over in the course of the last 13 years. I know it’s his job and I listen as always. Finally he locked me in place, and in I went. The first part of the scan was exactly as always. I found myself in my usual trance-like state as the machine started to pulse and buzz. Halfway through, I was brought out of the tube for my contrast, but I was not allowed to move. 

As soon as I was in the elevator, off it came!

As soon as I was in the elevator, off it came!

As the second half of this MRI was beginning, something happened to me that has never happened before. One very obnoxious symptom of MS is commonly referred to as the “MS hug”. This is not the kind of hug anyone wants, believe me. It is an extremely tight, banding sensation around the rib cage, that often makes it hard to breathe and causes upper back spasms. It’s also a fairly new symptom for me, having only presented about a year and a half ago. So there I was, in the “casket”, locked down to the table with the “Hannibal Lecter mask”, and as I took a deep breath getting ready for that moment in the zone, the hug started. Then the spasms. The machine was clanging so I knew I couldn’t move. I kept telling myself to breathe. I tried meditating, which usually gets me through something like this. I even contemplated using the call button that I’ve always held tightly in my hands but have never thought about using. 

This whole experience is actually a metaphor for life my with MS. It came along and knocked me off my feet (literally!). But I adapted to my new “normal”, and life moved forward. Now it seems like whenever I get used to my new normal, something else pops up, like the MS hug, and again, I learn to accept my ever-changing state of normal. The beauty of this all is that now I know how resilient the human spirit can be. There is no doubt in my mind that whatever MS throws at me, I’ll be able to handle it, as long as I allow myself the time necessary to adjust. And besides, what’s the alternative? 

Falling

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Most people look at me and would never know that I have MS. The truth is that I haven’t had full use of my left side for over 12 years now. In addition, I am numb from the underside of my breasts (sorry for the image) all the way down to the bottoms of my feet. I compensate for these issues pretty well because I’ve been doing it for so long. Most days I don’t even think about it because it’s almost second nature. I do stumble and trip a lot, but I seldom go down. 

MS has a way of hiding in the background sometimes, at least this far down the road. It’s not that I ever can forget that it’s there, but I just get used to things. I get lulled into a false sense of security because everything is manageable for the moment. All it takes is one set-back to bring me back to reality. 

Going back to the numb feet, it might seem as though it’s not a big deal. And when I am paying attention to things, it really isn’t! But there are moments when I just want to feel “normal” and not have to be hyper-focused on my every move. 

Last week, I was having a lovely summer fun day with my girls. We were chatting and hanging by the pool. I’ve been feeling strong and healthy, and when that happens I lose sight of the fact that things are still harder for me than for other people. I was admiring the Hibiscus of all different colors that grow around the pool. I must have dozens of pictures from years past of the exact same flowers, but when you are a picture person, that never matters. Instead of watching my feet, I was looking through my camera lens. Big mistake when your feet are numb! I couldn’t find the ground with my foot, and down I went. 

This is the shot I took as I was falling. Beautiful, isn't it?!

This is the shot I took as I was falling. Beautiful, isn’t it?!

It was a pretty hard fall: a tumble and roll on an unforgiving surface. I think it has been an entire year since I fell this badly. I’m pretty sure the girls were more scared than I was because they have never witnessed me in such a vulnerable position. When I got myself up, I was scratched up and more embarrassed than anything else. They fussed over me, wanting to get a first aid kit or some Bacitracin. The more they fussed, the closer to tears I got because I was thinking how scary it all must have been for them, and how frustrating it was for me to have broken a really good, fall-free streak. My MS family gave me a great analogy for this scenario. When a child falls, and you don’t make a big deal out of it, he will most likely pick himself up and continue doing what he was doing before. But if you run over to him, cooing and making a big stink about it, he starts to cry. That is exactly how I felt! 

The damage done. Poor guy didn't even see it coming!

The damage done. Poor guy didn’t even see it coming!

As bruised up as I was on the outside, the inner damage was far worse. My confidence was completely rattled, and for the rest of the day I was shaky and unsteady on my feet, and I dropped everything I attempted to carry. It’s amazing how quickly things can change. One minute I felt strong and healthy, and the next minute I felt feeble and weak. 

Luckily, I live in “Holland” now (http://www.makinglemonadebecauseican.com/holland/), and I am able to do what my body needs when something like this happens. So I put myself on the couch and stayed there for 2 days, resting and recovering. I allow myself this time without pressure or stress, because that ultimately manifests in magnified MS symptoms, which is exactly what I try to avoid. I feel incredibly fortunate that I can focus on what I need to do for myself, and I’m also grateful that I have learned to listen to the cues my body gives me and how to respond appropriately to them. 

This fall could have been a lot worse, for sure. The bruises and scrapes are almost gone already. The psyche, on the other hand, is a little slower to mend… but it’ll catch up! 

Made Strong

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There is no doubt in my mind that some days, the universe is clearly unfolding as it should. Earlier this week, I had one of those days. 

It started off like many other days. It was a Wednesday, and I always work out with my trainer on Wednesdays. The only thing different about this particular Wednesday was the fact that I was going straight from my trainer to meet someone who I had not seen in a really long time for lunch. We spent some time talking about where to meet, since she was coming from a distance, and we were looking for some place conveniently located. We chose a random diner in a random town at a random time on a random day. And if I didn’t need to leave straight from my trainer’s house on this random day, I wouldn’t have been wearing this: 

I'm not sure why I chose this t-shirt to wear on this particular day.

I’m not sure why I chose this t-shirt to wear on this particular day.

If I wasn’t running early, and my lunch date wasn’t running late, things might have worked out differently. I do believe that I went into the restaurant for a purpose rather than sitting my car or in the foyer. As I walked in the door, I was greeted by a friendly guy, who asked about my shirt. He asked if it stood for Multiple Sclerosis, and if I was a “supporter”, or… And I answered his question by telling him that I am a patient. 

Why does any of this matter? Because his wife has been newly diagnosed (within the last few months), and they are both feeling lost in a world they never anticipated. I listened to him tell me their frustrations, and I assured them that there are resources out there. By the time I left, I had given him the name of some good neurologists, my email, my phone number, and my website. In a short period of time, we talked about diet, exercise, support groups, and even disability. I am over 12 years down the line from them, yet I remember those feelings like it was yesterday. One of the reasons that I have gotten so involved in patient advocacy is because those memories will always be raw for me, and I’ll never forget how desperately lonely I felt even when surrounded by my loved ones. 

At the end of my lunch date, I left my new friend. He said he really wanted to hug me but he thought it might be inappropriate. I assured him that the MS community is like a family, and of course he could give me a hug. 

(Plus, I really love a good hug!)

I meant what I said about family. Although there are much better ways of becoming family, MS certainly can tie people together. It’s instant understanding and instant compassion. I have done my share of patient advocacy work in many different capacities such as public speaking and “ambassador” work such as (www.rethinkmsrelapses.com), but the most rewarding to me is when I am connected to a newly diagnosed patient, one-on-one. I encourage people to give my information to others, and you’d be surprised by how frequently I find myself in this situation.

I love being able to give perspective from where I am now to patients who are just starting their journey. This road is not an easy one, and I would not mislead anyone into thinking it is. But overcoming obstacles builds strength, and also sets priorities straight. Those are gifts that might not necessarily have been given otherwise. Life is not perfect. Hell, it’s not even easy most of the time. But it’s our life and we get to choose how to react to adversity. Do you sit around sucking on lemons for the rest of your life? Or do you make some kick-ass lemonade? 

I think you know my answer. 

Medical Science

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I have always been impressed by the world of science. I don’t always understand everything I read, but I do know when exciting things happen, particularly in the world of MS.  

Although there is still no cure for Multiple Sclerosis, once upon a time (in the not so distant past) there were not even treatment options. When diagnosed, often times patients were told to stop working, stay home, and rest. Being confined to a wheelchair was fairly common for MS patients, and at that time, the future seemed pretty bleak. 

This is how MS patients used to envision their future.

This is how MS patients used to envision their future.

It wasn’t until the early 1990’s that any sort of treatment (not cure) became available, and only by way of a lottery. The lucky numbers got the first crack at it. To be clear, the treatments for MS are considered Disease Modifying Agents/Drugs (DMAs/DMDs) that are not meant to cure but rather to modify the course of illness by interacting (often suppressing) different parts of the immune system, reducing inflammation that causes relapses. Even without a cure, if I have to have MS, I feel damn lucky to be living in a day and age where there are multiple treatment options for helping to slow disease progression.  

When I was first diagnosed just over 12 years ago, there were just four different treatment options, all injections. I spent those first few years tied to a self-injection schedule. I diligently kept track of injection days and rotated the injection sites as instructed. Even though I hated having to do it, it never would have occurred to me to skip a dose because it was my only hope of keeping MS at bay. 

I had exhausted all of the Interferon based injectables just in time for the first IV treatment to be approved for relapsing forms of MS. It was a very exciting time, and the prospect of a once a month infusion and no more self-injecting was very appealing. However, this DMD did not come without warning…a black box warning, to be exact. If you’ve never seen a black box warning, it is the strongest of warnings that the FDA has and requires of certain drugs, stating that the drug carries significant risk, and possibly even life-threatening side effects. And that warning is outlined by a bold, black box. It was not a decision that I took lightly, but with so few options, I decided to go for it.

Unfortunately, I was unable to remain on that treatment because I had advancing MRIs, antibodies to the medication, and it was simply too dangerous to remain on it despite the fact that I felt great. My only option at that point was to go back to an injectable treatment, and unfortunately it required daily injections. I had previously been on treatments that required injection every other day, which allowed me a day in between injections to not have to think about it.  But now I felt more than ever that my life revolved around injections because every single day I was burdened with that reminder. My skin did not react well with this medication and I did not know how long I’d be able to tolerate it. 

That’s when I enrolled in the clinical trial (http://www.makinglemonadebecauseican.com/clinical-trial/) for the first oral medication that was FDA approved for treatment of relapsing forms of MS. That was in 2008. It became commercially available in 2010, and now there are two other oral treatments available as well! 

There are currently 12 approved Disease Modifying Medications for Multiple Sclerosis, which is huge considering that prior to 1993 there were none. I often get irritated with the pharmaceutical industry when I see how much the mark up is on something as necessary and important as medication. But the reality is that if there was no markup, there wouldn’t be money to do the ground-breaking research that gives birth to new treatment options. My hat goes off to the scientists who continue searching for new medications and a cure, and I would be remiss if I didn’t give a shout out to my fellow clinical trial patients everywhere, who take risks that help the greater good. 

The ever growing list of treatment options!

The ever growing list of treatment options!

For a while there, I wasn’t very hopeful that I’d see a cure for MS in my lifetime. But very exciting news this week (http://multiplesclerosisnewstoday.com/2015/07/01/roches-ocrelizumab-found-superior-standard-interferon-therapy-relapsing-multiple-sclerosis-patients/) has me thinking otherwise. They are getting closer and closer to halting this MonSter all the time. I wouldn’t be surprised in the least if one of my former students ends up being the one who ends this MS nonsense. One day I’d like to tell my nephew, Lucas (http://www.makinglemonadebecauseican.com/luke/), the story of how I used to have Multiple Sclerosis. I guarantee at the end of that story, we all live happily ever after. 

IMG_0909

Ok Lucas, once upon a time Aunt Rennie had this crazy disease called Multiple Sclerosis…