Monthly Archives: February 2019

Slow and Steady

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Last week I posted on my Instagram account as well as in my closed MS and Exercise group (pretty much the only reason I stay on Facebook) a “Transformation Tuesday” picture. This is a rare occurrence for me because I seldom post pictures of me alone unless I’m in some sort of yoga pose. However, it is around this time every year when I try to take inventory of things in my life. I’m not sure why. Perhaps it’s that I resigned as a teacher right around this time of the year, or perhaps I just get more self inquisitive because the weather can keep me isolated.

The picture I posted compares where I am right now to this time around four years ago. Let me start by saying that four years ago I was practically jumping and doing cartwheels because I had slowly been working to overcome a particularly tough MS relapse.

I will also say that I have long since suffered from body dysmorphia so I never see myself any differently in the mirror and the only way I see a difference is by making a side by side comparison like the one I posted. I’m pretty sure that lots of women suffer the same issues as I do, as we are all constantly exposed to what society deems “normal” or “healthy”, and very often what we see or hear is false. Air-brushing makes our idols seem perfect and we all strive to be like our idols.

I’ve also had a pretty contentious relationship with the scale my whole life. I remember getting weighed in the locker room during gymnastics practice one day when I was 14 years old, and my coach told me to lose 30 pounds. I’ll never forget her words: “So if you are going to eat a sandwich, just eat half. If you’re going to eat an apple, just eat half.” This on top of hearing snippets of conversations of my mother talking on the phone to someone or other about my weight. At age 14, I was a normal sized kid, very muscular from participating in many sports, and with a thick frame. But all of these issues have remained with me to the point that when I see any of my doctors (and there are lots thanks to breast cancer and MS), they all know my deal. I understand that they want to monitor my weight so that they can compare to see if there are drastic, unexplained changes happening. But I will always step on backwards, and they will never tell me the number, and we will never discuss whatever the number on the scale reads. It’s not important. My blood pressure is normal to low, my resting pulse rate reflects that of an athlete for sure, and I know how I’m doing because my clothes tell me.

The reason for my “Transformation Tuesday” post was to show others who struggle like I do/did to get to where I am that there are no fads or gimmicks out there. This is something that is four years in the making, and I’m still not done. When I first looked at the difference between me today and me four years ago, I almost didn’t even see a change because that’s how programmed I am. I wanted people to know that I did this despite having MS and breast cancer, and that results don’t happen overnight. The only way lasting changes dig in and latch on is by going slow and steady. We are all on a journey and although we might not be clear about where we are heading, we must keep reminding ourselves that slow and steady wins the race every single time. Life is a marathon, not a sprint, and anyone who has run a marathon will talk about the endless training that happens in order to prepare for race day.

Ultimately I have been working to be the strongest me I can be so that Bruce and I can have the best life possible together for as many years as we are given. I know that I need to stay strong so I can always get down on the floor and play cars or LEGO with my sweet nephew. I need to stay strong so that I never become a burden to anyone, especially to Bruce, who has always been my rock.

Every single day, I’m trying to be a stronger, better version of myself and if that includes weight loss as a happy by-product, great! And if not, I would be perfectly happy being fat(ter) and strong because that is my driving motivation. Strong. The people who I love most said things like “Holy cow! But I never saw you any differently then.” Those people are the truest friends I have.

So my message is to never judge a book by its cover. I mean, I know it sounds cliche, but when you see someone you haven’t seen in a while, and perhaps they’ve gained a few pounds, just love them. You don’t know what obstacles have crossed their path and they could be dealing with emotional baggage, medical concerns, or a host of other things that we do not understand.

Four years ago, most people would have looked at me and called me fat, and hell, people probably still do. But I know that changes don’t happen overnight, and so no matter where you are, just keep trucking. Goals are meant to be accomplished by putting in the hard work. I never, ever lose sight of my goals, and I keep pushing myself (even gently at times) because there is joy and satisfaction in accomplishing what you set out to do. So I’ll see you at the finish line! Look for me there, cheering you on.

Expectation

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I saw this quote this week, and even though I have heard it said to me probably hundreds of times, it became much deeper somehow when I saw it in writing.
Expectations, specifically mine of other people, have long since been a topic in my sessions with my therapist.

I’m not sure if it’s how fiercely I love, how much I am willing to give, or maybe even the way I was raised that made me feel hurt and let down so frequently in the past. Whichever it is, I have worked really hard and made tons of progress over the last several years. When one lowers the expectations (or gets rid of them entirely), one erases the possibility of heartache. In the beginning, it seemed such a lonely, not to mention unfair way to live, but once I started consciously living this way, my attitude about everything changed.

When a friend of mine was going through tough times, he used to say that he was an army of one. It used to make me sad to hear him say that because I was a supportive and loving friend, but ultimately I learned what it meant. Truthfully speaking in broad strokes, people in general are concerned with themselves and everything after that is an after thought. There are battles in life that we must fight alone, regardless of who else is there in spirit. A great example of this was my battle with cancer. I had support for sure, but I alone am the one who had to lay in the most awkward of positions at radiation every damn day.

So it’s kind of ironic that while I have worked so hard to shift my way of thinking, I feel like other people in my life have shifted in the opposite direction. It seems like the less I expect of some people, the more they expect of me. For most people this would not be a big deal whatsoever. But for someone with MS, expectations = pressure. Pressure = stress. Stress = symptoms flaring. It’s an endless cycle. My tendency has always been to avoid everything and withdraw emotionally from these situations, because I was always scared that confrontations would often lead to flaring symptoms, but seldom lead to any sort of resolution.

But these days, that’s not me. I’m not afraid to say that I have found my voice. At almost 47 years of age, I’m not looking to impress anyone, and I make no excuses for who I am. If I have something to say, I’m going to say it, and for the first time ever, I am looking out for ME. Number one. I have battled Multiple Sclerosis for almost 16 years, and I kicked breast cancer straight to the curb. Despite my share of setbacks, I am proudly feeling stronger than ever, both inside and out. I guess when you are staring down the barrel of the gun that is cancer, the other BS just doesn’t matter. I spent most of my life consumed with doing and being what everyone else expected, without even giving it a second thought. Well, my friends… the tide has turned. This girl has finally learned who number one is. And it’s about damn time.

At the end of the day, this is my number one. Two imperfect halves = one perfect whole.

Sick

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I hate being sick, and since I am such a stickler about germs, it rarely happens. As I write this entry, I have been ordered to rest by multiple people (including Bruce, my trainer, and my sister), and I am thinking about the last time I was sick. It was five years ago, almost to the day. The timing of this “ick” came at the worst possible time because I really had to suck it up… I had yoga teacher training all weekend, and those are days that can not be missed since I am required to reach the mandatory amount of hours of training. It’s not that my group isn’t flexible, but I hate to put anybody out. We have had the required dates since September, so I brought all my supplies (tissues, hot tea, Ricolas, Mucinex, Advil, etc.) and I kept my distance so as not to infect the others.

It brought me back to five years ago when I had a similar “ick”. It was Valentine’s Day, and my Mama B  and I spent the morning at a consultation for my disability retirement, filing the necessary papers, and then at the urgent care clinic. She took care of me and made sure everything was taken care of before she tucked me in and made sure I had everything I would need until Bruce got home just a little bit later.

It’s funny how even as an adult, a little mommying goes a long way when you feel so ill. Being sick is NEVER fun, but for those of us with MS, especially those of us who are heat intolerant, a fever is something to be feared. It’s one thing when outer heat affects your body, but it is completely different when the heat comes from inside. I was vibrating everywhere, tingling, numb, shaky, and in pain. Plus every symptom I’ve ever had was magnified a gazillion-fold. I was miserable, and rest never comes easily to me.

Luckily Bruce understands this and made sure that I had soup and tea, plus cold drinks, and all the other necessities I needed. He cozied me up on the couch, turned off the lights, and left me me with the pups to rest quietly.

It’s not how I prefer to spend a weekend (plus a few extra days), but I know it is needed. I hate not being able to exercise my body, but doing so under these circumstances only opens me up to injuries so I need to be patient… also not an easy thing for me.

The thing I’m missing the most this time around with the “ick” is the nurturing of my Mama B, believe it or not. But alas, I am a grown up, and at some point we all have to accept that being sick is a part of life and we won’t always have a mommy there to take care of us. And I’m lucky because I have something even better: a partner who understands what I need when I need it, and who takes care of me through everything. I may not be feeling well physically, but my heart is full and our life together is pretty perfect.

PS. I’m keeping this entry short because if I don’t I will get chastised (and rightly so) for not resting like I should.

Necessary Evil

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A few weeks ago, I had a regularly scheduled appointment with my neurologist. Nothing new has been happening but I never go for more than six months at a time without a check up. In fact, seeing him every six months is a step up and actually means I am stable, otherwise he would be checking me every three or four months, which has often been the case in the past.

After over 15 years with the same neurologist, we have a unique relationship. A few years ago I had an MS relapse that was very different than any I had experienced before. It came out of the blue, and all of a sudden I was tremoring everywhere, including my voice. But by far the most troubling part was not my arms and hands (and my voice) tremoring, but the involuntary tremor that was affecting my eyes. I was experiencing nystagmus (an involuntary eye movement which may cause the eye to rapidly move from side to side, up and down, or in a circle, and may slightly blur vision) and oscillopsia (a vision problem in which objects appear to jump, jiggle, or vibrate when they’re actually still), which was extremely uncomfortable, and worse, very scary. My neuro explained that this was a relapse that was affecting the brain stem, which controls involuntary movements (like eye movement) and he offered a medication to help ease the tremors.

I was willing to try the medication because I was that uncomfortable, and even though I’m all about the “less is more” philosophy on controlling my MS, I needed to try something because aside from the hand and arm tremors, my eyes were not focusing well and I found myself exhausted with a headache and just wanting to close my eyes all the time. Probably about a year and a half ago, we discussed the possibility of me trying to wean off this drug. At the next appointment he asked me if I had tried, and I responded honestly to him that I was too scared to try it. He was totally understanding and supportive of me, as he always has been, which is why I have been with him for all these years.

At my most recent appointment, we discussed the possibility again. After all, I am feeling stronger and more stable every day, and I have managed to cut out most of my “supplementary” medications, which are all geared towards symptom management (but I would never take myself off a disease modifying treatment meant to slow the progression of disease activity).  I didn’t do it all at once, and I’m pretty proud that my body has accepted these reductions in pharmaceutical assistance. So we discussed a plan of how to safely reduce this particular medication in hopes of weaning myself off it entirely. I left his office feeling good about where I am almost 16 years into this battle with MS, and excited about the prospect of eliminating (hopefully) another unnecessary drug from my treatment plan.

For five days, I went on the reduced dosage as discussed during my examination. The first day or two, I felt off. I was walking into things, dropping things, and wearing my reading glasses more and more, so that I could focus my eyes. I was frustrated as hell because my balance is never great, but I was falling over at the simplest of poses on my yoga mat, and I couldn’t even balance on my head, which is one thing I never have issues with. I didn’t even make the connection at first that I had reduced my dose. I just thought I was having a rough couple of days. But on day five I made the connection.

I never make big decisions without consulting my partner in crime, Bruce… and so we talked about it. This conversation happened on a Friday, and we decided I would up my dose back to where it was, and that I would give it until Tuesday to see if my recent issues were related to the decrease in this particular medication.

Don’t you know that almost instantly I was feeling less tremory, more balanced, and better able to focus my eyes without the use of my reading glasses. Would I LOVE to be off of all my supplementary medications? Definitely. But I understand that this “snowflake” disease affects every single patient differently, and just because I want to not take any extra medications at all, that doesn’t mean it’s possible for me. At least not at this moment. I am grateful for the researchers who figure out that drugs meant for other illnesses can be used to manage pesky MS symptoms, and to my neurologist who offers me these options when he knows I can get a little relief. Is it what my preference would be? Certainly not! But that doesn’t mean I’m not thankful for having it.

Eternally.

Life is full of trade-offs, and it is up to each of us to decide what is the best decision for ourselves so that we can live our best lives possible. I never want to look back at my life and feel that I suffered through something needlessly because I refused assistance, or that I tried and I was too proud to admit I needed it. So the moral of this week’s entry is the following: take help when you need it from whatever the source. We are humans, and it is only human to admit it when we require intervention of any sort. We must accept who we are, “wobbly bits”*  and all.

*Thank you to Dr. David Hamilton for introducing me to this phrase in the book that has become my bible, I Heart Me: The Science of Self-Love…. I highly recommend this book for anyone on a journey to love yourself just as you are.