Monthly Archives: March 2018

MS Awareness Month

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Being that March is MS Awareness Month, I would be remiss if I didn’t blog on the topic at least once this month. The Cambridge Dictionary defines “awareness” as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience”. While I feel that most people have the knowledge that MS exists, very few of those people (if any) are truly understanding about how different one’s life can be when MS tags along for the duration. 

The array of symptoms that each patient is afflicted with varies so vastly not only in the exact symptoms experienced, but also in the intensity that those symptoms carry. I do think that MS Awareness is more about understanding than anything else, because without a cure, that’s what we really need. 

For example, one person made a comment to me about the following scenario: We had a family event planned which required traveling over an hour just to get to the venue. Prior to that, of course, I had to shower, attend to this thick head of curls that always needs attention, dress in normal clothes (not PJs or workout gear), put on makeup, and then travel the hour. All of this in itself is exhausting without even counting in the event itself. The comment made to me was one of complete and utter disbelief, “So your energy is sapped because you showered and got ready and sat in the car for an hour?” Yup. That’s how it works. When I am dressed to go somewhere, of course I try and look my best, and I usually hear, “How are you feeling? Because you look fantastic.” Looks can be deceiving, and no one can see what’s wreaking havoc inside my body because of lesions (scleroses or scar tissue) on my brain and spinal cord. 

I’m going to be brutally honest here and I’m going to share some of the invisible symptoms that I endure every single day but you don’t see. Maybe if I talk about them, even if they are embarrassing, we can get to a place where awareness equals more compassion. 

First and foremost, let me just say that I am “blessed” (sarcasm… in case you couldn’t tell) with some symptoms that are considered “rare” for MS patients. 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 first is simply 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. In addition to the pain, I deal with what I refer to as a “cranky” bladder. This means that when I have to urinate I can’t, and I try and try until tears are streaming down my cheeks. There is a solution (self-cathetorization) which I am NOT open to at this point in my life. I can’t even believe I’m writing this, but people should know. This doesn’t just happen at night, but it’s worse at night, and adds to my inability to sleep.  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. 

In addition to just feeling sleepy because of my nighttime habits, I also get to “enjoy” (again, 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.

Another “fun” (have you caught on to the sarcasm yet?) 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. This happened one time at a funeral repast, and I stumbled very obviously. Another guest at the table (who knows of my condition) said, “Did you have a nice trip? Did you just get those feet?”, and because not enough people were listening to him, he repeated it until he was reasonably satisfied that a sufficient number of other guests heard his little “joke”. I cried all the way home. And people wonder why I like to do things low-key and at home whenever possible…

Another 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. 

Other symptoms include what I call “surface” numbness from the underside of my breasts all the way down my body, left sided weakness and loss of coordination and function, and 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 use Hickies laces or similar products). 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. 

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. 

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. It would be a whole lot easier if awareness really did bring about understanding and compassion from those around us. But for now, I’ll just take comfort in the fact that most folks even know what MS is! 

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. 

Not getting the sideways glares and dirty looks from others (on the rare occasion I actually go to a store and use the handicap parking stall) might make me feel that, perhaps, awareness truly can lead to compassion. 

Retirement

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It has been almost four full years since I officially retired on disability. Some days it feels like it just happened yesterday, and other days it feels like it was a whole lifetime ago. When MS decided it was time for me to be done, the reaction I got was quite mixed. Some people thought I was doing exactly the right thing, while others felt I was far too young (only 42 years old at the time) and that I would be miserably bored. I, however, had no opinion because I felt like I was living someone else’s life and that I would undoubtedly wake up (at 4:45) from a horrible dream and end up commuting as always, ending up at my desk by 6 am.

This is the official letter that the Board of Education sent me acknowledging my retirement.

So we all know that didn’t happen and I was actually living my reality with an extremely difficult adjustment. Unlike many people, I absolutely LOVED my job. It was my passion, my driving force, and the thing that always kept me evolving. I had to. I was teaching teenagers and I did what I had to do to keep current for them. It wasn’t always easy. My classroom was a safe haven for so many and my days were usually 10-12 hours long, not even counting my 22 mile commute. Even though I often found myself unable to do anything more at the end of the day but put my head on my desk and cry out of sheer exhaustion wondering how the hell I would find the strength to get to my car and drive home, I never questioned that I was doing it out of anything but pure love for my students. And if I had to do it again, I wouldn’t change anything because it was the only way I knew how to do the job, and it’s what the kids deserved.

Addressing those who expected me to be bored and miserable, all I can say is that I’m not, because as it turns out, taking care of myself is a full time job these days. My world has certainly changed, but I don’t feel like I am a lesser human being simply because I don’t report to a paying job every day of the week. Every single day is devoted to me and my family, something that somehow got lost in the mix of being Mrs. Rankin, the teacher. Now, instead of taking care of my students first, I realize that I am no good to anyone at all if I don’t take care of me. Somehow I have ended up in this beautiful world where all the best parts of everything reside. I take care of me, and because I do, I can be fully present with my husband, and even get to spend quality time with the many students who remain a source of pride for me and are the proof that I did, indeed, do my job the way it was meant to be done.

So what does taking care of Rennie look like? Well, it’s committing to a healthy life, including diet and exercise. It’s knowing when my body needs rest so no matter how badly I want to get to that Tuesday morning yoga class, I understand that sometimes, I just can’t make it happen. It’s about taking care of my mind and spirit with a consistent meditation habit that allows me to settle in and find clarity. It’s about being kind to others in any way possible so that I put good karma out into the universe, because it always comes back and in spades. It’s about learning about who I am and why I am who I am, so that I am always evolving, becoming a better version of myself. It’s about love and laughter that feed my soul and keep me smiling. It’s about volunteerism, whether with the dogs at Marty’s Place or helping the many MS patients who are referred to me for too many reasons to count. This life that I’m living right now is truly beautiful, and even if I could have kept working I never would have been able to appreciate it the way I do because of how focused I was on that one thing I thought defined me: my job.

That brings me to something I have written about before, but I’ll give you the abridged version right here. When I first stopped working, I was a complete and utter disaster… an emotional wreck who cried at every single session with my therapist. She told me that I just have to learn to appreciate “Holland”. What? Ok so let’s say you’ve planned your whole life to take an amazing trip to Paris. You’ve researched everything from food to museums to hotels to excursions. You’re on the plane and you’re so psyched that in mere hours you’ll be living your dream. When the plane lands, you’re not in Paris. Instead you find yourself in Holland, which you are not prepared for so you are devastated. But Holland is awesome! There are tons of museums and fun things to do, and besides that, the people are incredible. So even though Plan A wasn’t meant to be, that doesn’t mean Plan B has to suck.

Paris, obviously. I am glad I travelled while I was young and healthy!

I’ve been living in “Holland” for four years now, and it has gotten better and better the longer I’m here. I no longer dream about “Paris” because life in Holland has been good to me, and has given me more gifts than I ever thought possible. There is a quote by Sarah Ban Breathnach that says, “Success in life is not how well we execute Plan A; it’s how smoothly we cope with Plan B.” Indeed!

There is nothing more beautiful than life in Holland!

 

Lucas

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It’s funny how my nephew, Lucas, has only been on this planet for almost three years now, yet I can’t imagine my life without him. He has changed our little family dynamic in such huge ways that it really does blow my mind. Before he was here I used to imagine how many things I could teach the baby-to-be (we didn’t know he was a Lucas before his much anticipated, albeit early arrival), and all the things I would get to experience with him (or her). Little did I realize then that this tiny creature would be teaching me as many things as I teach him. It sounds silly to say that a not-yet three year-old has taught me anything at all, but if you think about it, we can all learn from children his age.

First of all, Luke doesn’t ever judge me, or anyone else. He loves me whether I’m fat, skinny, with makeup, au-naturel, dressed up, in yoga pants, or any other way I present to him. He just knows I’m Auntie and I am always full of snuggles for him. He knows I’ll get down on the floor and play cars, color, or do “oga” (yoga) with him. This might be the cutest thing ever as he puts himself in downward dog under my downward dog, and then he looks up at me and says “hi!”. Then we even do namaste, and open our arms super wide when he says “open sesame!”. The lesson here is quite clear. At three years old he doesn’t judge anyone based on anything more (or less) than the love he feels. I always think about what he will be like in the future and I’m hoping that this quality sticks with him so that he can continue to teach others, specifically his peers that love is what counts, and love comes from the inside of a person, not from outward appearances.

“oga”, Lucas-style.

Another thing Luke has reminded me of is how to be considerate of others. One time he was so excited that I was going to read him a book that he threw the book up on the couch before hoisting himself up. The book hit me in the leg and before we could read the story, he insisted on kissing my leg because he was concerned that he hurt me. Similarly, when my foot was in a boot because of my broken toes, he couldn’t kiss my boo boo enough. I have been practically knocked over in crowded places (thanks to balance issues related to MS), and no one even acknowledges that fact, but a three year-old would.

He loves lining his cars up in different formations. My sister-in-law is so funny when she sends us these pictures, she sometimes says that she will leave the room for a minute and come back to a “Blair-Witchy” scenario!

Luke also eats when he’s hungry, drinks when he’s thirsty, and stops when he’s done. Most adults unlearn this behavior somewhere along the way which is why there is a growing epidemic of obesity.

When he thinks something is funny he laughs. Not just a normal laugh. A contagious belly laugh. He’ll ask me to tickle him, beg me to stop then ask for more. You know why? Because it feels damn good to laugh! The other night we were FaceTiming and he was cracking himself up because the answer to every question we asked him was “poopy”. It reminded me of being able to laugh wildly and without abandon, as we all should because it feels so much better than not laughing. It’s reassuring to me that this is pretty much proof positive that he will not be afraid of laughing at silly things like fart humor, even when he is an adult.

Perhaps the thing that I have learned the most from this little boy is to be happy. He takes joy in the little things. On a simple nature walk with his mommy he said that he was having “too much fun”. Or if the mail carrier honks and waves, he thinks it’s great and it makes him happy.

I’m just the aunt and my experiences with high school kids in my former life as a teacher were different, yet equally rewarding in other ways. As far as my little Lukey goes, I’d like to wrap him up in bubble wrap, protecting his little (but powerful) spirit, and bottling up all the sweet lessons he has taught me as a reminder for his future self. But because he has me, I promise to always be there to remind him, even when he’s a teenager and he no longer thinks his auntie is cool. If you find yourself at a loss and need reminders about how beautiful simple, every day life is, spend some time with a three year-old like Lucas. His lessons have been invaluable to me, and I will treasure them always.

Project 365

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This week, I started a new Project 365 daily photo journal. It’s not something new to me, as I have 4 years of my life documented this way. However, when I am feeling the need for positivity in my world, I always seem to come back to my photo journaling.

One thing it does for me is that it connects me to my beloved “photog friends”, a very special group of people that I met through our shared passion of photography. We go places together on “photo field trips”, and we always encourage each other not just relating to our photos, but also where it comes to life in general. These friends are extremely dear to me, and I always know that they are there for me no matter what. It’s a very unique bond that joins us together.

3/1/18: I’m back at it! I decided to start p365 again (after completing 4 years of it already) because it has always kept me in the place I always want to be, with the ability to find beauty and moments worth photographing in every single day. I know I won’t always be busting out my Rebel but I need to do it more often so I can work those photog skills too. I’m apologizing in advance to all those who join me at moments such as meals when I don’t let anyone start eating until my picture is taken! And I’m also apologizing in advance to Bru for the times when I scream “pull over!”. So from here I start my 5th (but I’m sure not my final) Project 365. #p365 #project365 #wannabephotographer

But the reason I always come back to my Project 365 is because it keeps me who I am: the glass half-full girl who can find positivity anywhere, any day, any time. Beauty is around us everywhere, and we just need to remain open to the possibilities. After a rough 2017, I knew I wanted to really make 2018 my bitch, and the way I’m doing that is by bringing honest appreciation for all things positive into my life.

Whenever I am doing a p365, I see the world differently, through the lens of my camera (or my iPhone if I don’t have my camera with me), which magnifies all things beautiful. It’s a reminder to me that even though ugliness exists in the world, I don’t have to see anything other than the beauty I choose. Although I love taking little trips with my photog friends, it’s not necessary every single day. We all have the power within us to admire and appreciate something beautiful, no matter how small, in our everyday lives.

3/2/18: I always love snow… but especially when it’s just enough to make everything pretty, but not so much as to be a nuisance. #breatheinthemoment #p365 #project365

After having to commit to something I didn’t want to do, and wasn’t at all pretty last year (radiation for breast cancer), I’m pretty sure it will be a piece of cake for me to commit to something that I love and that makes me happy (Project 365). I know I won’t always have the most exciting pictures, and that’s ok. I have said many times that I’m so grateful for every damn day I’m here on this planet (especially after battling breast cancer), and I can prove it by taking something beautiful from every single day I’m given.

In this crazy (and so often ugly) world in which we live, it’s so easy to lose sight of the good, the beautiful, and the wonderfully positive things that we are blessed with every single day. With my trusty camera and my will to see beyond the unseemly details that infiltrate our daily lives, I am ready to look deeper, and to find meaningful beauty every single day, documenting why I have chosen that moment to be frozen in time forever, to be looked back upon with a smile for years to come.

3/3/18: yup I’m a 45 year-old dork and I have a friendship bracelet with one of my best friends in the whole wide world. She’s chocolate and I’m vanilla but other than that glaring difference we share so many similarities. This is actually the 2nd pair we have been through, and believe it or not, mine started off blue and brown just like hers… but since I never take it off, radiation made it change colors even though the sentiment remains. It’s so she knows she is always in my heart. I will replace it forever so I can continue to give her strength whenever she needs it. #friendshipbracelet #p365 #project365

If you are looking for a great way of viewing your world and all the beauty it can offer you, I challenge you to look for those beautiful moments in every day life, even if you aren’t a picture-taking kind of person. Maybe you’ll find your own path to true happiness, and if not, you can just join me on my journey!

(I am keeping the album of my p365 photos public, and you can access them here!)