Monthly Archives: May 2019

#MyInvisibleMS

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May 30, 2019 is World MS Day, and this year’s theme is #MyInvisibleMS. Although I don’t think MS is worthy of celebrating on World MS Day, I do believe it deserves to be acknowledged, and the theme this year is one I could write about over and over because it is how I live my life.

You see… someone walking by me, or meeting me for the first time would never know that I have Multiple Sclerosis. In fact, I’m deep into my journey with MS, having been diagnosed just about 16 years ago, but with symptoms going back 27 or 28 years. But I look fine, and I ambulate without assistance but #MyInvisibleMS is always raging, so allow me to share what people can’t see, and what I deal with every single day. I give you fair warning… it’s not pretty and you may never look at me the same way again.

In no particular order, I will try to make you understand what #MyInvisibleMS looks like from the inside even though you can’t see it from the outside. I’m going to start with the most embarrassing one first to get it out there, because it’s not easy to discuss. Let’s talk about bladder function. While many MS patients suffer from incontinence, I suffer from the opposite problem. I can be totally hydrated and feel the urgency to urinate, but often times I can’t. I sit trying with all my might, until tears are rolling down my cheeks from the pain and effort. The option to treat this symptom is self-catheterization, which I’m not ready to face. #MyInvisibleMS doesn’t show this on the outside.

Moving on…now that I got that first one out. I have what’s called Nystagmus, or involuntary eye movements in which the eyes rapidly move from side to side or in circles. The more tired I am, the more it happens, and it eventually causes my vision to get blurry. These tremors in my eyes go along with my hand tremors, which luckily are easier to control with medication than the situation with my eyeballs. But #MyInvisibleMS doesn’t show this to most people, because it’s hard to see unless you know it’s there.

When I was first diagnosed with MS, it was due to left side weakness, tingling, and numbness. I never recovered from those issues that still plague me to this day. I also can’t feel my feet and don’t know where they are if I’m not looking at them. I am surface numb from the underside of my breasts all the way down to the bottoms of my feet. That’s why I miss steps, fall down them, and break toes. It’s why I trip over nothing, and it’s why I don’t notice that I’ve lost a sock somewhere in the house, or how long I walk around wearing just one sock. This is a tough one because it’s not that I need a cane, and since I don’t regularly use it, when I fall in public I’m more likely to get ridicule rather than assistance. This “surface” numbness, left sided weakness and loss of coordination and function, cause what is jokingly referred to as “fumble fingers”. My fine motor skills are definitely lacking! I can’t color between the lines, I can’t clasp my necklaces (love my magnetic clasps!), and I can’t even tie my shoelaces (but I wear kicks that don’t require tying). Yet #MyInvisibleMS doesn’t show this to the world.

I’d like to tell each and every one of you that if anyone (even a neurologist) tells you that pain is not a symptom of MS, run (unless you have MS, then just walk, hobble, or roll yourself away as quickly and safely as possible)! The reason why I mention pain is because it interferes with my sleep. The pain is bone deep, and it’s a constant ache (with an excruciating spasm here and there), primarily in my lower extremities. It’s very difficult for me to find a comfortable position, and when I do, it’s only temporary. Late at night I often wander around the house from bed to couch to chair seeking comfort so I can sleep. I have tried all of the prescription (and over-the-counter) sleep aides, and pain killers of all varieties, but to no avail. I call it “painsomnia”. Sleep deprivation on its own is enough to really mess with your thought processes, not even taking into account cognitive deficiencies due to MS. Imagine how you’d function sleeping only 1-2 hours at a time. Every. Single. Night. #MyInvisibleMS keeps that well hidden.

In addition to just feeling sleepy because of my nighttime habits, I also get to “enjoy” (sarcasm) the body crippling fatigue that is so common with MS. Imagine that one minute you feel fine, and then the next minute, you can’t even  summon the energy to pick your leg up to take a step. Everything feels like it’s wrapped in lead, and you feel as though you’re just sinking in quicksand. There were many days while I was still working when all I could do was put my head on my desk and cry because I didn’t know how I’d make it to my car, or home. When you tell someone with MS how tired you are, understand that your tired (because you didn’t get a good night’s sleep) can in no way compare with MS fatigue. It is, for sure, in a category all its own. #MyInvisibleMS doesn’t let on.

Another “fun” (sarcasm again) symptom is my total lack of balance. There is a neurological test known as Romberg’s Test. I am Romberg’s positive, which sounds good but it isn’t. When a patient stands with feet together, arms by sides, and eyes closed, a Romberg’s positive patient will sway, or even stumble or fall. It’s a test that is used to detect poor balance. While I don’t walk around with my eyes closed and my feet together, I am always off-balance. I have a wide based gait as a coping mechanism, but being off-balance can be extremely debilitating. I can’t be in crowded places because I can’t maneuver a crowd with my wide gait and perpetually numb feet, and when there are a lot of people around, I lose my footing. #MyInvisibleMS covers this one up as well.

A symptom that is considered rare is the MS itch. It’s insatiable. And because it is neurological, topical creams and antihistamines are useless.  I have scratched and scarred my skin in so many places, it’s ridiculous. Once the itch starts, it doesn’t stop, and the next thing I know, I’m raw and swollen. The worst part is how badly it burns when I get in the shower afterwards. I have one friend who also gets this itch (shoutout to Cathy!), and it seems that it usually affects the same area so that’s good, I guess. She gets it on her torso, and I always get it on my legs, feet, hands, and shoulders. With all these scars, I’ll never be a model, but they are a part of me and I consider them a badge of honor. Proof of my battle. #MyInvisibleMS knows my battle but doesn’t share the story with others.

The “MS hug” is not the kind of hug you want to have, as it squeezes from the ribs, all the way around to the upper back, and often causes shortness of breath. It can disguise itself as back spasms too, because it’s sneaky like that.  #MyInvisibleMS doesn’t reveal the secret.

Perhaps the worst of all the nuisance symptoms I deal with are the cognitive ones because they are by far the scariest. Most times, it’s just simple things like trying to remember the word I want to use, or even forgetting my thought in the middle of speaking. Focus and retention are big weaknesses for me, so I’ve learned to watch certain TV shows and movies with the closed-captioning on. This allows me to read and listen, a true teacher strategy. But by far, the most frightening of incidents has happened to me more and more, but it is a fairly recent development. I can be driving along my very familiar route when all of a sudden I can’t figure out where I am. I start to panic, pulling over at my first opportunity. I cautiously look around, hoping for something to look familiar. Nothing. Finally, I realize I have the perfect tool for this, my GPS. I turn it on and after several deep breaths, I continue on my way. Often I use it even when I know where I am going, simply for the reassurance that it offers me. #MyInvisibleMS doesn’t let this out.

I could go on, but the point is, that many MS patients look just like me. We don’t necessarily use assistive devices to help us ambulate, nor do we have neon signs over our heads pointing us out. But we are not like our “healthy” counterparts because despite what you see, every second of every minute of every day is a battle. We do look good, but we are also good actors because we have to be. It’s the life we have been given, and we accept it because we are warriors and we must. #MyInvisibleMS demands it.

So the next time you see me (or someone who looks “healthy” like I do) getting out of my car in a handicap parking stall, don’t judge me for not being handicapped enough, and know that even though you can’t see it, my battle is, indeed, very real. #MyInvisibleMS is not invisible to me. And do you really need to see something to believe it’s there? I mean, you can’t see gravity but I assure you it exists. #justsayin

 

Meditations

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This past week Bruce was out of town for work. He doesn’t have to travel often, thankfully. It’s usually just once or twice a year. But when he is gone, I do realize how grateful I am for everything he does to make my life easier. Plus this year, I have been on strict orders to rest because I have a severe case of tendonitis… what is generally referred to as “tennis elbow”, although I haven’t picked up a racket in over 25 years. I don’t find tennis to be an MS friendly sport, although I grew up playing it and other MS patients may find it easier than I do. Anyhoo, I have been very limited in what I can do, and I am following these orders to the letter since I am so ready to get back to my normal routine. What I can do right now is walk (but it has been rainy and damp), and seated yoga stretching. Nothing at all that uses any part of my upper body. Ho. Hum.

In addition to Bruce being away, my sister has been away too. We don’t see each other every day, but we do talk on the phone about a gazillion times a day. Some days I realized that until Bruce checked in before bed, he was the first human being I had spoken to all day. I mean I talk to my dogs, but obviously they don’t understand so those conversations don’t really lead anywhere.

In the past when Bruce has been away, I’ve had visitors of all kinds… and at the very least people who knew he was away would call (or at least text) to see if I was ok or needed anything. I’m not sure why this trip was different. But it was. The funny thing is that normally I might be upset or sad about that. But this time I wasn’t. Since I haven’t really been able to do the physical practice of yoga, I really honed in on other pieces that go along with it… like meditation. With all this time, I did my usual TM (transcendental meditation) twice daily like always. Then I added in meditating with modern day mantras using my mala beads.  I also added in some karma yoga, which is one of the paths to “enlightenment” in which the practitioner simply does good deeds. Not all yoga includes putting yourself in poses, and none of it is about hand-standing in crazy dangerous situations and posting pictures on Instagram for the followers you have paid for…. but I digress!

Meditating with malas is pretty powerful.

This was not my ideal week, and I for sure felt sorry for myself for a hot minute before remembering that I have the tools to change that mindset, and I did. And I did not forget about my twice daily gratitude journal either. Like I said earlier, having a partner like Bruce is always at the top of my gratitude list. But saying that encompasses so much: he cooks, he cleans, he goes grocery shopping, he runs the errands, he feeds the dogs, he cleans up poop, he runs upstairs if I need something, he takes care of the garbage and the recycling, and probably everything else you could even think of. In short he takes care of everything, works hard at his job (which is quite stressful), and then takes care of me. Because he wants to, not because he has to. And he does this because my job is to take care of me so that I can stay strong, ensuring that we have as many happy years together hopefully keeping MS where it is without further progression. That is my only job and Bruce is adamant about that.

My rock. My purpose. My everything.

I already knew I was lucky to have my guy before he went on this trip, but it was reinforced so clearly this week because I reflected so much upon this life. I really wish that everyone in the world could have a partner that supports me the way Bru supports me, because everyone deserves it. And perhaps if they did experience it, maybe, just maybe this world would be a much sweeter place to be. Or maybe I’m just over-meditated! 🙂

Clinical Trials

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Today I am sharing an updated version of a previous blog post because I couldn’t let Clinical Trials Awareness Week go by without acknowledging the many, many patients who put their health and welfare on the line each and every day as human guinea pigs, in order to broaden the spectrum of treatment options for patients suffering from a myriad of conditions. I did it once and I’d do it again, except that now I seem to have aged out of most trials, I’ve been diagnosed too long, or I’ve been on too many treatments, all of which are to be expected when you’ve been diagnosed almost 16 years. If you know anyone who has served in the capacity of human guinea pig, celebrate and honor them for doing for the greater good. This week, I proudly present my own experience as a clinical trial participant.

In honor of Clinical Trials Awareness Week (May 13-17, 2019), I decided to share my experience as a participant in the clinical trial for what was once FTY720, then Fingolimod, and ultimately became Gilenya, the first oral medication for relapsing forms of Multiple Sclerosis.

The months leading up to my search for alternate treatment options were some of the darkest of my life. I had exhausted all of the available approved medications (at that time only four different injectable options). After I had failed on a once a month infusion therapy, which to me was nothing more than hanging out with my friends once a month, except we all had IVs in our arms, I began my last remaining option: a daily injection, which ruled my world. I had horrible injection site reactions, regardless of how diligently I rotated my injection sites. I tried a heating pad, I tried ice, I tried morning, I tried night, I tried just after a shower. I tried everything to make things better, but to no avail. The worst part about the MS treatments is that they don’t offer any “relief”, and taking them is a really all about the future. They are the best chance we have of slowing the progression of an inevitably progressive illness, but there is no instant gratification, and the results will never truly be known. In any case, I knew I wanted to be on treatment, but I did not feel that I could withstand the torture of the burning lumps, bruises, and excruciating after-effects of my current medication.  

With no other treatment options available to me, I dove into the world of clinical trials. Coincidentally, I had seen a segment on the news regarding the Novartis Freedoms II trial testing the efficacy and safety of an oral medication, and I learned that the trial was recruiting participants. I found an online screener, completed it, and was directed to a study center that was participating.  After the online screener, I received a generic “thank you for your interest” email, advising me that if my preliminary responses indicated I was eligible, a study nurse would contact me. I felt deflated, again yearning for instant gratification yet not getting it. But several days later, I received a phone call from the study nurse, and spent about an hour discussing the course of my MS in great detail. At the end of our conversation, I was one step closer as we scheduled a face-to-face appointment to discuss the informed consent, which is a huge document outlining every single side effect that had been reported, as well as what my responsibilities would include. It was a pretty scary wad of papers that my husband and I scoured through (also enlisting the help of my dad, my sister, and my mother-in-law), and came back with a list of questions for my next appointment. 

In November of 2008, I had my first of many appointments at The Gimbel MS Center at Holy Name Hospital in Teaneck, NJ. It was one of the very first ever comprehensive care centers for MS and it has a great reputation, particularly relating to research studies. I met with the study nurse who went over the informed consent, point by point with me. She patiently answered all of my questions, understanding of how scary a proposition it is to enroll in a research study where you may (or may not) be taking a medication that is brand new, with side effects and efficacy yet to be discovered. Preliminary results from early trials can be encouraging but still do not tell the entire story. But that November day in ’08, I made a decision that undoubtedly changed my life for the better. I consented to a two year, double blind, placebo controlled clinical trial. I knew that the possibility existed that I would be on no medication at all for two years, but they were testing two different drug dosages versus placebo, so I felt that my odds were pretty good. Instead of a fifty/fifty chance of getting the product, I had a two out of three chance. In my mind, I just knew that the universe would take care of me. 

Being in a clinical trial requires commitment. Even before I took my first dose, I had two full days of baseline testing which included visits with a dermatologist, an ophthalmologist, pulmonary exams, MRIs, EKGs, and I even had to wear a 24 hour Holter Monitor (which I told my students was recording everything going on in the classroom…and they believed it!). Additionally, I had to meet with the researching neurologist, the examining neurologist, and I underwent a battery of neurological tests (which I’m convinced are all meant as torture devices) with the study nurse. And this process was repeated every three months. As much as scheduling was often difficult because I was still working, being monitored so closely made me feel safe even in previously uncharted territory in the world of MS treatments. 

It didn’t take long before I was convinced that I was on the product and not a placebo. I am very sensitive to medications, and I am known to experience side effects, even those deemed “rare” for most patients. This was no exception! In fact, there were  times that I was forced to take a “study drug holiday” until things normalized in my system. I was doubtful that my elevated liver enzymes, or the variation of my absolute lymphocyte count could be attributed to the “placebo effect”! But I still stuck it out. I committed for a two year trial, and I knew in advance what the risks were. I could have opted out at any time, but I felt it was important to follow through. They might not have liked how my body reacted at times, but it was data that needed to be collected for the good of the MS Community.

This was a 3 month supply of my study drug. Every 3 months I had to bring what was remaining and switch for a new “kit”, even if there were pills left. They always gave a few extra just to allow for scheduling issues.

Nothing about the clinical trial surprised me, including the fact that they did not want to use me in an extension trial. In fact, they did not even want me to complete the trial with them. At month 21, the very product I had been taking, became commercially available as Gilenya, the first ever oral medication for relapsing forms of Multiple Sclerosis. I maintain that if my numbers were ideal throughout my time in the trial, I would have been asked to complete the “exit” portion, which in essence, would have sealed my numbers into the results of the trial (and also given me “free” study meds for 3 more months!). I transitioned to the commercial product, which was fine by me, because I still got what I wanted in the end: another treatment option.

This is what the original Gilenya packaging looked like. It is the worst concept ever, particularly for patients who lack manual dexterity, or what my friends and I call “fumble fingers”. Also, it was only a 28 day supply, and ran about $5,000 per “month”.

I almost jumped for joy when the packaging changed to a regular pill bottle and an actual 30 day supply!

Years later, we were “unblinded”, and as it turns out, I was on Gilenya the whole time. I learned a lot through the process, and I know it taught me more about being a “professional patient” than I ever thought possible. It’s true that my motives for enrolling in the clinical trial were self-serving, but ultimately I knew that I was also doing for the greater good. And although I am no longer on the product, I endorse it whole-heartedly because it served me well for over eight years, which is an amazing run where it comes to treatments for MS.  I was patient number 002516, and I’m damn proud of it. 

Married to Yoga

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It has been a while since you have heard from Bruce, and I know you all love it when he steps in for me, so I recruited him (read: told him) to write this week. This is his unedited voice, and although some parts sting a little bit, I get it. Without further ado, I present Bruce’s latest piece.

Ren’s yoga game has gotten very strong.

For the last eight months, Rennie has been married to yoga. At least it feels that way to me. Back in September 2018 she embarked on 300 hours of yoga teacher training, and in many ways it’s become the main focus of her life. Multiple weekends a month are spent in class while she learns more about the art of yoga in nine months than most people ever will in their lives. And while I couldn’t be prouder of her I can’t help but feel a bit abandoned (ridiculous as that may sound).

Don’t get me wrong…I’m glad she’s found something she’s passionate about to make her feel useful (her word, not mine) and to replace what she lost when MS took her teaching career from her…but I’d be lying if I said that I didn’t feel like yoga has become more important to her than me. Honestly, I think that at this moment yoga might be the most important thing in her life, because for the first time in years she finally has the sense of purpose that she lost. This is the Rennie I knew when she was a high school teacher. Someone who was lost…just another casualty to the chronic illness she’s battled for so long. But this Rennie is not a stranger to me at all, because it’s who she once was not long ago.

One of my favorites of us from our trip to Providence, RI. Can’t wait for our next adventure.

During the 15 years that she worked as a high school Spanish teacher, Ren was 100% committed to not just the job but the lifestyle. She lived and breathed teaching, spending most of her waking hours devoted to the art of teaching and her students. A devotion that eventually resulted in a well-deserved teacher of the year award back in 2011. Although all of this hard work meant that unless it was Summer vacation, I was more often than not living the life of a single man, because there just was no time for me.

During this time I never really considered how much of a workaholic Ren was…for a lot of reasons. First of all, it was all I knew because even before she became a teacher she was devoted to her first career as a retail manager for Walgreens. The hours for that job were such that she routinely worked nights, weekends & holidays, and I became so used to her not being around that when teaching became her vocation it seemed like a major improvement. After all, at least I saw her. She was always grading papers or writing lesson plans, but she was physically present. Not so much available or emotionally present, but I knew what she was up to and what she looked like. It wasn’t until 2013 when MS finally ended her career that I realized how little time we spent together.

We both like plaid. A lot.

Now on permanent disability with nothing to do but work on herself, I seemed to have a wife for the first time. We could spend nights and weekends doing things together, or just talking. It was something I quickly got accustomed to, and also something that helped me to deal with my own issues with anxiety and poor self-esteem. It was kind of like dating all over again. A Ren-aissance, so to speak.

And as much as Ren enjoyed getting to know me all over again, something was missing. She needed to feel fulfilled in a way other than just being my wife. And while my jealous nature makes it difficult to see, I do understand that. Ren is a driven person that needs a purpose. I’ve known this about her for over a quarter of a century, and it’s just one of the many reasons I fell in love with her as a teenager.

200 hours down, 100 to go before I get my wife back.

The good news is that she’s only got a month of training left, and I’ll have her back before you know it. We can both see the finish line. It probably won’t be long before she finds another goal to push herself towards that will take her away from me again. But it’s not all bad…I mean she has gotten a hell of a lot more flexible, if you know what I mean 😉. And there are lessons that I can learn as well. Maybe I need to find something to be passionate about, and to give me purpose. I can’t be a big kid forever (or can I?).