Monthly Archives: July 2018

Patience

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This past week, I was side-lined by a sinus situation. I have terrible seasonal allergies, and with our late winter, straight to summer thing happening in our parts, my body has been as confused as nature has been. Adding the drastic heat and humidity only made things worse for me. For most of the week I could do nothing more than remain horizontal for fear that my eyeballs would pop out of my head.

All the necessities.

That being said, I don’t handle this kind of situation well. I like to be up and active, doing my “schedule”. That’s the thing about teachers. We are so regimented because we are used to rigid schedules. I mean, we don’t do anything unless a bell rings telling us that we can! So being disability retired for four years now, I have created a schedule for myself that revolves around taking care of me. And quite honestly, I am pretty strict about maintaining that schedule because it gives me a sense of purpose.

But what I need to understand is that taking care of me requires that I listen to my body and give it what it needs, even if I am off my schedule. It’s not like when I was working and being absent caused more work in the long run. Now I have the freedom to do what I need to do, and I still feel a pang of guilt when I skip out on my usual activities. But why? It’s not like it causes more work like when I was teaching still, or that anyone would really notice my absence except me. It’s because old habits die hard, and apparently four years is still not long enough to outgrow those feelings.

Steam inhaler…

The truth of the matter is that I’m still learning patience. Not normal patience, but self-patience. I need to understand that although most days I feel pretty good (all things considered), but I do have Multiple Sclerosis, which makes everything hit my body a whole lot harder than my healthy counterparts. I also can’t disregard the fact that I spent most of 2017 fighting breast cancer, and there are toxins that are still making their way out of my system. It’s easy for me to say these things, but not so easy for me to put those words into practice. I know my reality but I want to be the one who can overcome it all no matter what the circumstances. And I believe that I can… but not without patience.

No patience whatsoever.

The truth of the matter is that one week of down time is not going to kill my progress, and giving my body what it needs is the right thing to do, regardless of how impatient I become. In the long run, giving myself the week to rest and recover can only help me become stronger, and because of how awful I was feeling, it most likely would have led to frustration with myself, which I try to avoid at all costs because it plays with my mind and makes me feel down on myself when I know I shouldn’t.

Squiggy snuggles helped.

So the moral of this week’s entry is one that everyone should be able to relate to. If you don’t take care of yourself first then you will be of no use to anyone else in your life. I want to feel like I contribute in a positive manner to all my loved ones, and in order to do that, I need to take care of number one. And although I am not sure about the origin of this quote, it is 100% true: “Patience is not about the waiting, but the ability to keep a good attitude while waiting.” I’m working on it.

Almost back to warrior status!

Stuff

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I don’t listen to pop radio, so when I’m in my car I’m usually listening to Sirius Satellite Radio, where I can hear so many different options with limited commercials. Recently I tuned in to “Carlin’s Corner”, one of my favorite go-to stations. Some of you youngsters may have to google George Carlin, but he was perhaps the greatest comedian ever, and he changed the culture of comedy single handedly. But beyond being a comedian, he was a commentarian, sharing observations that we most likely have all thought of too, but never had the nerve to express publicly. He also was a magical wordsmith, which as a language person, makes me smile from ear to ear.  I was happily surprised to tune in and hear one of my favorite Carlin bits, in which he talks about “stuff”. In his classic Carlin way, he talks about how we as humans want stuff, and we buy houses to hold our stuff. Then we buy bigger houses when we have more stuff, and he even talks about the drama of what stuff to take when we go on vacation.

(Click HERE to see Carlin’s routine about “stuff”. Warning: some profanity included!)

This got me thinking about stuff. Now don’t get me wrong because I love being an adult and having stuff, especially when I think back to our “hungry years”  when Bru and I struggled to even buy groceries.  The thing I remember most is that we didn’t have a lot, but we were still incredibly happy. Fast forward 20 years or so and all of the real life obstacles we have conquered together, and I am easily reminded that stuff doesn’t make us who we are.

Sure, it’s nice to be able to have the stuff we want, but stuff can’t guarantee happiness, good health, or anything really. When we were building this big beautiful house that we are currently living in, we lived in a hotel for 21 weeks (and a day). The large majority of our stuff was in storage during that time because all three of us (Bruce, our dog at the time, Mookie, and yours truly) were living in very close quarters,with no room for excess stuff. Thinking back upon that time period makes me realize that we really don’t need to have the stuff, because we went that long without it. There may have been times when we wanted something specific that was in storage, but it didn’t kill us not to have it. We have always made do with whatever we had… as long as we had each other.

I’m not the kind of person who is easily impressed with stuff. Cars don’t impress me, nor do big TVs, or fancy clothing and jewels. I just want to drive something reliable that gets me where I’m going, clothing to cover my body (because no one except Bru wants to see me naked), and although I love the diamonds that he has gotten me, I would have married him with a piece of string to wear around my finger. I certainly don’t derive any pride from the stuff we have, except when I think about how far we have come since the days of grocery shopping in my mother-in-law’s pantry.

The truth of the matter is that stuff is just stuff. What we should really take pride in is the strength of our character. In the end, no one will remember the stuff we had, but if we have lived life well, then they will remember that we were kind, generous, thoughtful, hard-working, respectful, and full of love for those around us. That’s the way I’d like to be remembered. I think the best way to sum up this entry is with a quote that really resonated with me:

“Always demanding the best of oneself, living with honor, devoting one’s talents and gifts to the benefits of others – these are the measures of success that endure when material things have passed away.”   — Henry Ford

 

As long as this guy is by my side, I don’t need any stuff at all.

 

Note to Self

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So this week, my blog is inspired by a former student of mine, who is working on a film project. He asked if I wouldn’t mind writing a letter to my younger self about being diagnosed with (and living with) Multiple Sclerosis. Of course I LOVE helping out my former students, and when they inspire a blog topic, it’s even more special. I will be speaking to the me that was in college, feeling awkward because for some reason, unbeknownst to me at the time, I found myself unable to keep up with the partying and social aspects that kids that age generally count on as part of the whole college experience. Without further ado, here goes!

Life is not easy. Sometimes we are thrown curve balls. Sometimes we hit them out of the park, and other times we miss entirely. I could tell you that it’s great being an adult with the freedom to make your own choices, eat ice cream for dinner, and stay up all night partying. But the truth of the matter is that choices have consequences that you’ll have to deal with somehow. I could tell you that it’s normal to burn out on the social scene in college, even if your friends are still going strong. I could tell you that the incredible, overwhelming fatigue is normal, along with the extreme clumsiness and weird visual disturbances that you write off so easily without giving it a second thought.  The truth of the matter is that you didn’t know any better, and why would you? No one at age 19 thinks that they will end up where I am now, at age 46, living with a chronic, incurable, and debilitating disease. No one at age 19 thinks that they will one day be a breast cancer survivor, and why would they? Somehow we all begin our adult lives wearing rose-colored glasses, impervious to how harsh reality can be. I wish we could all wear those glasses to shield us from the truths that exist in the real world, but at some point, you have to put on those big-girl panties and face the facts.

The biggest piece of advice I can give you is that even though you might think that you are invincible, you are not. No human being is. You must listen to your body, and be proactive about caring for it, because it’s the only one you get. If something doesn’t seem right, trust your instincts and do not hesitate to seek medical care because with all serious illnesses, early treatment is key. The world of Multiple Sclerosis is a scary one, and knowledge is one of the only things that can help it feel less intimidating. The truth is that in that world you will find a support system of friends who you consider family, only better, for the simple fact that they understand everything that you deal with on a daily basis. The most important thing you can do for yourself is surround yourself with people who exude positivity, happiness, peace, and light. Your MS will thank you because stress and negativity of any sort will manifest physically causing your MS symptoms to flare. Plus it’s so much nicer to be around people who are content rather than a whole bunch of “negative Nellies”. You are strong, but you are allowed to have moments of weakness, and it is at those moments when you can lean on the support system you have built. No one can be strong 100% of the time, and it doesn’t make you weak to express frustration, sadness, anger, or fear when you feel the need. You are, after all, only human. Just remember that those emotions are not productive and if you dwell on them, you will never be truly happy. Happiness comes from gratitude for all that you have and all that you are, and recognizing (and acknowledging) those pieces of you will always propel you forward.

So live fully, despite your limitations. Live happily, despite your fear. Smile from your soul, because you are an innately optimistic person. Love with your entire being, and don’t waste your energy on those who don’t reciprocate that love. Be true to who you are, and be comfortable in knowing that you are enough. Most importantly, remember that there are no guarantees in life, and it doesn’t always follow your plans, so roll with the punches and make the best of every single day because life is fleeting… but also beautiful. As long as you are fully present you will never have any regrets. Trust me. I know these things. I have lived them. It has taken me time and reflection, plus a lot of work on myself to achieve acceptance and understanding. I did it for both of us, because we deserve nothing less.

Change

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This week, I am tackling a topic that is intentionally cryptic because it’s something that I am not necessarily ready to disclose 100%, but my reasoning leading up to it is certainly valid.

I’m sure everyone has experienced the feelings of being in a rut. In the past four years since I stopped working, I have transformed my life, my body, and the way I think.   The process has been slow and steady, and it has been worth every single second I’ve spent working on myself. Quite simply, putting in the work has made my life so much happier in every way imaginable. The more I work on me, the more available I am to have truly fulfilling relationships with those I hold dear, and that in itself has been a gift I never expected.

But lately, I’ve been feeling like I’m missing something, and I haven’t quite been able to put my finger on it. Perhaps it started when I was on “house arrest” due to the heat wave and consequently had way too much time by myself to do some soul searching. No one would know that I have been feeling this way because it’s not like it has affected how I act around others. I’m not brooding or crying or anything like that. It’s just that I have lost sight of my purpose.

Upon searching for my purpose, it found me. Details to follow!

And then when I least expected it, something new and exciting came up, and I found myself already feeling better even though nothing is set in stone. It is just the excitement of new possibilities that gives me fresh inspiration.

I found my mini binder from my teaching days and it is all ready for my next undertaking!

I now am looking ahead at this new undertaking of mine, excited to dive in and learn more about myself and others. I am ready to make a commitment that will be difficult at times but, the outcome is bound to be so beautiful. I am putting aside my fear, because it’s always scary to take on something new, but I am putting it aside because in the end, I know it will be worth it.

I will share more details as they get ironed out but in the meantime, my message is this: if you ever feel like you are in a rut, try stepping out of your comfort zone. I haven’t even started this new venture of mine, yet just the thought of it has taken me from “rut” to “yay!”.  If you aren’t moving forward and evolving, then how could you possibly feel joy and personal satisfaction?

Life is precious. It’s a gift. Every single day offers new opportunities. But if you don’t take advantage of them, it’s likely that the only thing you stand to gain is a whole lot of regrets, and that is NOT what I want in my life.

I want to continue learning and growing, and believe it or not, teaching. My classroom is not inside a school anymore, but the teacher in me lives on and always will.

So stay tuned as I hopefully start yet another new chapter in my life. I always say it isn’t the life I planned, but I wouldn’t trade it for anything. The devastation of disability retirement resulted in only good things and I am so very grateful.

(Shout out to my T minus 20, Dani, for stepping out of her comfort zone, taking on something new, and absolutely KILLING it, inspiring me more than she knows by doing so. The student has become the teacher!)

Love this girl so much. She works really hard and I have always been in awe of her maturity… Look how cute Little Dani was!

Heat Wave

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As we sit in the midst of the first heat wave of the summer in these parts, I feel it is only appropriate to write about heat intolerance and how brutally many MS patients are affected by extreme temperatures. In fact, last year, we lost one of our own (a friend in one of my MS Facebook groups) who overheated so quickly that by the time she realized it, she was unable to move or tell anyone what was happening. Long story short, when those around her realized what was happening and they got her to the hospital, her core body temperature was over 108 degrees. She died shortly thereafter.

So I’m here to tell you that heat intolerance (or cold intolerance) is very real. The vast majority of MS patients have broken internal thermostats and therefore are unable to thermoregulate ourselves. Some patients have more issues in extreme cold while others (like me) are more sensitive to extreme heat. There are even some patients who can’t tolerate either extreme and require a very temperate environment.

I wish I could tell you that it’s a simple matter of being uncomfortable or cranky in the heat, but it’s far more complicated than that.

When my core body temperature rises, the first thing that happens is that my legs get wobbly. Even more so than usual. Every single symptom that I experience on a regular day gets magnified. My tremors are more noticeable, even the ones I experience in my eyeballs (nystagmus/oscillopsia).This increase will cause me to have a crippling headache. My bladder gets even more cranky than usual, and if I’m not paying attention to my body, I will ultimately lose my vision entirely until I am cooled off. One time when I was still working, we experienced an oddly warm December day, and the outside temperatures were approaching 75 degrees. As teachers we did not have control over the heat, and it came on in October and went off in April. That particular day, the heat was blasting and it was warm outside, so I made my way to the nurse’s office without the benefit of vision. My vice principal came and escorted me because he told me he knew something was wrong because I was bouncing off the lockers. It’s not just a summer issue for me either since I’m always walking that very fine line when I exercise. It’s a balance between pushing myself and knowing how far is too far. It’s not easy but I am learning to pay attention more and more so that I can live as normal a life as possible.

Not a bad view, right?

I miss the summer days that MS doesn’t allow me to enjoy anymore: a day at the beach, on the boardwalk, at a pool, sunbathing, and just being outside. I remember that glorious feeling of entering a beautifully air conditioned environment after being outside in the sweltering heat. There is nothing quite like it. Especially now, when I spend my summer days moving from one climate controlled environment to another. By the end of the summer I have cabin fever, for sure because here at home the AC goes on in May and off in October. Here we are, barely in July, and I’m thinking that it’s going to be a long, hot summer for me and cabin fever is hitting me early. I’ll never understand why I still feel crappy on these excessively hot days even when I remain in the air conditioned comfort of my home, but surely it is a question that can only be answered by the MS gods.

There is nothing more fun than the Jersey Shore boardwalk. This is at Jenkinson’s.

I do realize that to many, the issue of air conditioning is a first world problem. It’s at this time I am endlessly grateful to be living in this day and age. I mean I could be living during the time when they actually used a hot water bath test to diagnose MS (true story!). But the truth is that we ALL need to listen to our bodies, MS or not. Ultimately as MS patients it is our responsibility to educate those around us about the severity of heat intolerance so that they can help us if we can’t help ourselves. We don’t need to lose another warrior to something preventable.

I learned this particular symptom of mine about three months after I was diagnosed with MS. I was scared beyond belief but the temporary nature of it made me feel like it wasn’t all that serious. Until last year when I was hit so personally by the death of a fellow warrior. Now I’m spreading the word so that others understand just how devastating it can be.

The next time you hear someone complaining about the weather, or if you do it yourself, just be grateful that your discomfort is just that, and not something debilitating… or even deadly.