Push through! Push through! You can do it.

Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. ~ Thomas Jefferson

As many of you know, I manage my MS by maintaining a strong exercise program – which includes swimming, walking, and yoga. This daily exercise routine is necessary to manage my fatigue and pain levels. Too much lying around causes my leg pain to skyrocket, and makes me more fatigued and less mobile. Two days of inactivity can cause painful immobility – and I really don’t like it, so hence I maintain as high a level of physical activity as possible. Luckily, my earlier years as a synchronized swimmer, lifeguard team member, waterpolo player and weight training enthusiast have given me a “push through the pain” discipline and mentality that serves me well now when I need it for my own survival.

Even so, MS remains confusing to manage and pisses me off sometimes (ok – lots of times).  I can push myself very hard while swimming and maintain amazing cardio benefits as a result. I can do hot yoga and regulate my breathing and maintain flexibility. But push myself a bit hard on a warm sunny day? …that’s another story all together. Hubby and I hiked around the Dingle Tower park here in Halifax recently on a beautiful sunny summer day, then we climbed to the top of the historic tower. It is just a few stories high…straight up wrought iron stairways. No problem, right? I mean – I am fit, and have cardio benefits to burn, right? Well, I get to the top…and the world starts to go grey at the edges and I feel myself about to faint…so I drop immediately and spend 15 minutes on the floor to prevent a full-on faint. All this brought on by being overheated and my MS flaring up, saying: “Nope – don’t like it. I am gonna take you down.”

It made me angry to feel weak and vulnerable. It made me angry to feel “bested” by my own body – despite all my efforts to maintain a good balance. So – that stubborn streak came out yet again. Because I recognized what was happening, I was abe to prevent a full-on faint by resting at the top of the tower, allowing the breezes to cool me rapidly. Once I felt cooler and stronger, I got back up – and I climbed down those stairs on my own, shaky legs and all. And lucky hubby – he did not have to carry me down the tower stairs! Though he chivalrously walked in front of me so he could catch me if I fell. (That man is wonderful – and so patient with my stubbornness! )

To me – it is that “push through the pain” mentality that allows me to push the boundaries of my own body like that – beyond my MS; beyond my fear of having a seizure. I don’t like feeling held back – and I will try to do whatever I can to succeed at my goal. Do I always succeed? Heck, no – we all know that by now. But to me, trying is the most important part – it means I am alive and moving forward. Sheer stubbornness helps too!

Respect your efforts, respect yourself. Self-respect leads to self-discipline. When you have both firmly under your belt, that’s real power. ~ Clint Eastwood



Me and my MS: Why I love the water and swimming

“Nothing is softer or more flexible than water, yet nothing can resist it.” ~ Lao Tzu

Carolyne coming up from the depths!

Carolyne coming up from the depths!

Water. H2O. Is there anything more beautiful and potentially terrifying at the same time?? The power of water (as can be seen in the floods we have seen here in Canada this year) is awe-inspiring. It can bring peace. It can destroy. It is a basic necessity of life.

In the summer, people often head to swimming pools, lakes, ocean beaches, rivers, kiddy pools, sprinklers…anything to be in or near water. We do this primarily to stay cool and get away from heat – MS or no MS. With excess heat, often comes irritability and  health distress of some form. With excess heat, those of us with MS often see flare ups of symptoms and severely increased fatigue levels – none of which is good.

Thank goodness for my ability to get in the water and swim, and feel comfortable, and feel cool. Whether I am upside down spinning in some wild synchronized swimming figure, or swimming flat out, or just floating…I am comfortably at peace with my environment.

In the water is the only place I feel no pain. When I am in the water, I feel like I am home.

When I say I feel no pain, I mean that gravity is no longer a factor in my pain. The movement in the water also helps take away the deep burning pain I chronically deal with in my legs.  Daily movement is what helps keep that pain manageable – but swimming helps give me a nearly complete break from it. (That is an emotional and mental bonus, in my books.) But in order to gain that benefit of feeling pain-free, I do have to push myself to feel the “pain” of hard exercise. I have to push my body to gain good cardio benefits and strength – and  that comes with the pain of the exertion, as in “No pain, no gain”.

I have been swimming again with my local Masters swim team…and marveling at the effects it has on me. While Synchro develops strength, grace, agility, and breath control, swim team develops more on the cardio and endurance levels. Gasp!!! The two combined, along with yoga, keep me physically balanced and increase my ability to manage pain. But I still sometimes overdo it – and I learn from it each time.

When one has MS, they have to learn to find the balance between “just enough” and “too much”, or risk the backlash of MS symptoms. I usually only know when I have pushed too much after the fact – such as when I end up deeply exhausted, in terrible burning pain,  and foggy brained for 2 days after a particularly hard training session. (That’s when gentle yoga and resting meditation is really critical!) Hindsight is always 20-20 though, eh? Finding that sweet spot between “just enough” and “too much” takes work – and often with MS, finding that sweet spot is never ending, because MS symtoms can flare and change so unpredictably. Do it anyway!

Try, Try, Try. Period.

“If you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But, by all means keep moving.” ~Martin Luther King Jr

Sometimes it takes digging deep – really deep – to keep getting back up and trying. Has anyone else noticed that?

I have been going through an exacerbation of my MS symptoms, with old symptoms returning with a vengeance. To complicate matters, my peri-menopausal flare-ups are adding new symptoms that I am trying to wrap my head around, as well. Combine the two – and well, we have a pretty fatigued and worn-out Carolyne on hand.

Last week was a particularly busy week at work, and I had to be on-site at the main office for most of the week. My MS symptoms were flaring pretty badly before the week had even started, with MS Hug episodes taking my sparkle down to a dull “splat”. Then, the 2nd day into the busy week I was hit by what I am now calling the dreaded peri-menopausal period. My fatigue and pain got so bad that one of the days I actually left the room full of people I needed to be with, headed to my office, shut the door, and lay there doing the yoga “legs up the wall” pose for 20 minutes…just breathing and trying to meditate to reduce the pain and fatigue and brain fog. (I think someone may have come into my office during that time…but left when they saw how busy I was!)

My synchro swimming was also affected in that my coach could tell right away that something was not right. She could see my fatigue and my balance was way, WAY off.

SO…this peri-menopausal period stuff seems to be becoming quite the deal-breaker for me lately. Cramps worse than when I was a teen. Fatigue like a sledge hammer. Brain fog galor.  Is this normal for someone with MS, or for anyone?? I really don’t know. Doctors don’t like to say anything for sure, though some websites do mention that hormonal changes can affect MS symtoms. I am here to say that when my period comes these days, it is like I have been hit with the Fatigue Hammer of the Gods! Holy crap! I can’t think straight; my pain levels skyrocket; and my fatigue takes me down to the ground. So…seeing as I am my own science experiment…I would say that my observations are telling me that my peri-menopausal menses and symptoms are prone to exacerbating my MS symptoms greatly. And I don’t like it!!!

But – no matter what, crushing pain or no, I have a family to take care of…so I gotta push through the pain, fatigue and brain fog and just keep tryin’. When I came across the song and video by Pink, it resonated with me…and to me, it inspires the will we need to keep trying.

“But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try try try
Gotta get up and try try try”

So that’s what’s been going on with me. I am getting up. I am trying. Period.

So what’s going on with you?



Recognising your Own Inner Strength through the Fear

“The journey of a thousand miles must begin with a single step.”  ~ Lao Tzu

Image Source: theinnerstrengthclub.com

I often get alot of people asking and commenting to me “How? How do you find the strength to keep going? To keep fighting? I couldn’t do it…I just don’t have that kind of strength.”

I am going to let you  in on a little secret – we ALL have that inner strength. The problem is, not all of us have the faith in ourselves or the willingness to accept or see that spark of inner strength and help fan the spark into a roaring fire.

You see, once you feel the fear of whatever it is that is stopping you in any way (such as facing the fear of living with a chronic illness), you then have 2 choices: to deal with the fear and move forward, or to let the fear control you and stop you from moving forward.

Take the first step in faith. You don’t have to see the whole staircase, just take the first step. ~ Dr. Martin Luther King Jr.

Remember the old  saying “Feel the fear and do it anyway”? Or, the old Nike slogan “Just do it”? Basically, these are all telling us to recognize our own inner strength; to not allow fear to make or keep us in a victim mentality. But saying and doing are entirely different things. It takes hard consistent work our our parts to keep moving forward, despite the fear, despite the drama, despite the fatigue…

I remember in my younger days, as a teen and young adult, how fear controlled me – fear of what people thought of me; fear of violence; fear of judgement; fear of non-approval; fear…yuck. Then after my kids were born, some of that personal fear was replaced by other fears: fears for my kids safety, fears for their health; fears for what they might witness or experience as they grew up. When I was diagnosed with a chronic illness, those fears changed yet again to fears for my quality of life; fears for how my health would impact my kids; fears for how I could cope with it all.

I can look back now at everything I have gone through, and everything I will go through, and I am confident that I have the strength to tackle anything. Does that mean I am sure that I will always succeed? Heck no! It means that I am confident that I have the strength, succeed or fail, to move forward and deal with anything that comes my way. Does it mean there will be no wavering? No tears? No anxiety at times? Heck no! It means that I am confident that I have it in me to always be able to re-group and grow, and figure out the best way forward for me.

And what are the key ingredients to this confidence and inner strength?

  1. Honesty – Always be honest with yourself. The worst thing you can do is lie to yourself. It’s okay to be afraid, tired, frustrated, sad, angry…
  2. Acceptance – Accept where you are in your life right now. Recognize that everyone learns and grows at their own pace, so you are exactly where you need to be right now.
  3. Persistence – Never, never, never give up. There will be setbacks. There will be days when you feel your life sucks. There will be days days where you wonder if it’s worth it all. Persist anyway! Feel the fear, and keep moving forward, even if it is only a millimetre at a time, or if it feels like you are taking 2 steps back for every one step forward. Remember it’s a journey – one tiny step at a time.

And the day came when the risk it took to remain tight inside the bud was more painful than the risk it took to blossom.   ~Anais Nin

Feel the fear – and do it anyway!



Turning Negatives into Positives as a Tool for Managing Chronic Illness

“Our greatness lies not so much in being able to remake the world as being able to remake ourselves.” -Gandhi

One thing I adore about cats is that no matter what situation they find themselves in, they usually figure out a way to make it a comfortable one. And they don’t make any apologies for it!

The new year always brings with it shiny new resolutions, new goals, new resolve. The beginning on 2012 has been a bit of a challenge for me, as concussion repercussion vertigo and MS weakness and fatigue have flared up. What it’s meant is that I have been forced into a bit of a downward physical spiral in that the vertigo prevented me from doing my usual cardio (though I managed a couple of aqua fit type classes for movement and falling safety…but the pace is very slow for my fitness level). Yoga has been greatly modified to allow for safety…so when I have been well enough, I have done restorative yoga. But none of the usual “pushes” over the bulk of the holiday.

I admit, I pushed myself to attend a New Year Welcoming 2012 Yoga event, doing 108 Sun Salutations to welcome the year and donate to charity. That was a double pleasure for me, because I also got a chance to lead a segment of the 108 Sun Salutations…a happy surprise! I took breaks as I needed…child’s pose…mmmmm. My darling Mikey got through all 108! WOW! We were both very sweaty and rubbery by the end – but what a great way to get a sweat on! Savasana felt SOOOO good.

This year is one in which I will be challenging my body to make changes. Yoga will continue to be my tool to see me through it all. I will be seeing new specialists regarding concussion damages and how to manage them. One thing that is always a challenge, and makes your body change, is medication changes. For instance, I recently weaned off my anti-depressant, as recommended by my sleep specialist neuro doc…it had the positive effect of improving my sleep, but negatively it may have affected my medication cocktail in such a way as to affect my metabolism…causing weight gain. (Not just the xmas weight gain.) So I will use this as the opportunity to challenge myself to lose the weight…and maybe a few more that crept on over the course of the ups and downs of the recent year. The docs will be changing my seizure meds too – to adapt to the sleep issues. They want me to change to a seizure med that reduces sleep and mood interference, and that is known to help with pain and even with weight gain issues. This could be a good opportunity to learn even more about how my body works and how to manage my health…but it will be another slow road.

“Always concentrate on how far you’ve come, rather than how far you have left to go.” -Unknown



A Revealing Conundrum

“The most important of life’s battles is the one we fight daily in the silent chambers of the soul. “~ David O. McKay

(photo credit: http://actinglikeanimals.wordpress.com/tag/dog/ )

Have you ever been in a situation where you had to weight the pros and cons of revealing something about yourself and risking making yourself conspicuous rather than staying inconspicuous?

I recently had to do a complex travel hop for work…alone. This hop included a flight to Ottawa for one day, then a mid-day hop to Toronto by air the following day, then an evening flight to return to Halifax after a day of meetings on the final day. So what was my conundrum? Whether or not to reveal my seizure disorder to airline personnel.

To reveal, or not to reveal – that was the question!

If I don’t reveal, and have a seizure, I could end up in the middle of some strange city as a form of “Jane Doe” with no one aware of my predicament. Or I could make sure I have back-up in the form of colleagues and travel staff at least knowing who I am and where I came from and where I should be. It really is kinda black-white in terms of pros-cons…but the part about making myself stand out from the crown is the part that can be the question du jour. Because I have absolutely no warning if and/or when a seizure may occur, and because they are full-on tonic-clonic, and I lose awareness of myself for hours thereafter, revealing is a very real question that I must consider whenever I travel alone. For example – in travelling to Ottawa and Toronto, I was heading alone on the flight, and staying alone in my hotels. If I had had a seizure mid-flight…the airline staff needs to know how to help me and who to call to care for me.  I have colleagues in both cities, so I could give them names. Coming home, I could give them my family contact info. But giving my contact info is not the issue…it’s the very real choice I must make to actually reveal my medical condition and the reason WHY they need my contact information.

Initially, I was not quite sure how to go about it – I wanted privacy as much as possible. So I finally decided that the best way for me to handle it was to board the plane during the pre-boarding times…when people need extra help, extra hands, extra time. That way I could get the airline stewards’ attention a bit more privately, and feel a bit less conspicious. (Now – that being said, sometimes the glares from impatient people waiting to board and watching what seems to be a perfectly hale and hearty woman boarding in pre-boarding can be quite daunting. I can only imagine the colourful words cycling in their heads!)

I gotta say – having 3 opportunities on 3 different planes in 3 days to experience my revealing conundrum was fascinating in some ways. (That nerdy scientific side of me always comes to the front, eh? Such a geek! ) One young steward was absolutely thrilled because he was a registered nurse with a neuroscience specialty. One steward was stunned, and did not know what to do with the information. One older steward was very professional, noting information and checking on me mid-flight. Me-thinks age and training levels may have had some play here, eh?

So – was revealing as much of a conundrum as I had thought previously? Not really. But then again, I am a person who is willing to be transparent and share my experiences in life so that others can learn from them, if it applies.

Revealing takes courage, and a willingness to be vulnerable. If you are not a person who is comfortable being open about personal issues, this can be a very tough situation. One has to weigh the pros and cons for themselves and decide – to reveal, or not to reveal.

That is the question. What is YOUR answer?

“Since life and experience is a matter of trial-and-error, there’s no need to take choosing – or life itself – too seriously.” ~Soren Lauritzen



K.Y.L. Yourself – no, really!

“When I’m good, I’m very good, but when I’m bad, I’m better. ”
Mae West

(photo credit: World of Harmony)

K.Y.L.  It means, for those who are not sure, “Know Your Limits”. It’s not as easy as it would seem!

Recently I have noticed that my “inner bitch” has been more mentally vocal of late. My patience is thinner than normal – to the point of nearly being non-existent if I have to deal with inefficiency and laziness at the office. Yikes. Without quite seeing it it, I’ve been feeling unsettled, with a low-level of anxiety, for the past couple of weeks. A number of things have been contributing to it..but the main this is that I have been pushing myself and not acknowledging my own limits. I always have some big project or big idea on the go, and my passions for helping people often translate into taking on way too much.This unsettled feeling translated for a while into me doing more, More, MORE. Why I go that way when I am overwhelmed & tired…well, that’s something I need to watch. Chalk it up to that old Type-A personality of mine!

How does one recognise when they have pushed themselves beyond their limits? It’s taken me over 47 years, but I think I am finally starting to recognize my own signs…I am finally KYL-ing myself better! For me, a very patient person normally, I see that my patience wears desperately thin, and I just need to get away from people as I pull in emotionally. My sensory input goes on overload – noise drives me up the wall and create low-level stress that grows. If I don’t address it, I begin to get agitated and antsy – craving sweet or salty foods…too irritated and exhausted to make healthy meals. (My kids love that phase because pizza becomes a staple!) My ability to push myself to exercise, meditate, and do my yoga becomes compromised…I’d rather just sleep. I find making simple decisions, like what’s for dinner, become irritating and burdensome – I resent having to decide. I also notice that I seek TV “fluff” more, and need to read simple fantasy books. (When I am really overwhelmed and pushed beyond my limits, I crave paranormal romance novels. Nothing like a good sexy and ripped immortal highlander to rescue you from the drudgery of your own thoughts, eh? Gives me a whole new perspective on “Hot Flash”!)

Now that I see that I have been pushing myself beyond my own limits, I can deliberately do the things that bring me back to my centre and allow me to rediscover my personal balance – things such as rest more, do more yoga, read or watch more mindless “fluff”, or pull back a bit on some of my personal projects. (Instead of 5 big personal projects, I cut it down to 2, with plans to take on the other 3 down the road when the timing and energy is better! Yay me! Hah!)

For me, this balancing act, and the ability to know my own limits, is critical. If I push beyond them, I risk provoking a seizure. I would really rather not, thank you very much. While I am never “there” myself – they really cause quite a cuff-uffle for friends and family due to their drama.

How about you? Do you have any signs or habits that signal that you’re maybe doing too much and going beyond your own limits?  KYL for yourself!

“The most difficult times for many of us are the ones we give ourselves.”
Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times



Balance in all Things – even your Passions!

“To think in terms of either pessimism or optimism oversimplifies the truth. The problem is to see reality as it is.”
― Thich Nhat Hanh

Balance. It’s all about finding the right balance even in the weirdest circumstances.

I have recently been giving a lot of thought to what exactly defines my personal balance, especially in appreciating the hilarity of my “new” medical status: fascinating, complicated, and unusual and confounding.

I saw my new seizure specialist, who works with my MS specialist, and they ran my case file in front of their monthly hospital specialists case presentation (House team equivalents). They are all stumped by my medical situation – I likely do have MS, but on the other hand my “brain mass” is deeply embedded in my left temporal lobe and hasn’t changed so it may be mild or benign MS. My spinal tap shows MS signatures – but even that test is not a specific test to “prove” MS. The brain mass may or may not have been in there all my life, but it’s too dangerous to biopsy so we’ll likely never know. Even with all the tests I’ve had, apparently it could have been “missed” by earlier technology. My seizures have epilepsy signatures and the placement of my “brain mass” in my temporal lobe is often a typical cause of seizures, but I also have signatures of something called non-elliptical attack seizures disorder (NEAD – which medical science does not understand at all right now). I endured severe childhood abuse, which is a factor lending to NEAD. They want to keep monitoring me until they can figure out what my diagnosis “should” be. Is it MS? MS and Seizure? MS, seizure and something else? All or none of the above?

My doc’s recommendation: stay the current path of MS & seizure disorder balance. In other words – keep doing what I am doing with teleworking etc; avoid stress as much as humanly possible; keep doing yoga; stay on the seizure meds – and keep an open mind! Because I have no warning he said I will likely never be able to drive again (unless they can actually diagnose me or discover an actual trigger). He also recommended I do not take baths (showers only) and that I do not handle power tools (WTF??).

That is the part that made me laugh until tears poured down my cheeks – My son already says “Mom, step away from the drill”. Now he has a doctor’s recommendation: his mom is not allowed to use power tools! (Hmmm…that could be a really good thing… do “power tools” include a stove for cooking dinner? :)

There is always humour to be found – even in the seemingly darkest parts!

One of my seizure triggers may be a delayed reaction to overwhelming stress – overload of either positive or negative stressors. So for me – I really need to stay aware of my personal balance. The people who know me, generally see me as a very positive person who takes on life with enthusiastic passion. Sometimes, in my enthusiasm and passion, I take on too much. I push myself to accomplish more, keep commitments that I made despite my personal energy levels: do, Do, DO. Even if the endeavors are completely personal and fully enjoyable – it can lead to a seizure if I do not monitor my fatigue levels.

Balance. It’s all about finding the right balance even in the weirdest circumstances.

“Life is a process of becoming. A combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death.” -Anais Nin



It’s all about Communication

“More important than the quest for certainty is the quest for clarity.” -Francois Gautier

Communication (noun): Intercourse by words, letters, or messages; interchange of thoughts or opinions, by conference or other means; conference; correspondence.

Communication. Such an amazingly simple concept, yet an amazingly difficult thing to achieve. We are a world surrounded by so many means of communicating…but is anything being heard?

I was recently reminded of how fragile communication can be. Communication fragility comes in many forms, such as when an e-mail is misinterpreted, leading to a hurtful misunderstanding between old friends; or when a text message is sent incompletely, leaving a confused recipient wondering what that was all about; or when there is no information at all shared, and communication is stopped, leaving a void to be filled with false assumptions, hurt, and resentment.

Sometimes, the misunderstanding can start from the perception of a simple phrase or word. Take the phrase “Good for you”, for example. To me, that phrase indicates support, well-wishing, and positivity. I recently ran across someone for whom that phrase meant insult, criticism, and implied a condescending intent. Whoa! How can two people see three little words so very differently? The answer, my dear: Personal perception…

Personally, communication is a big passion of mine – good, clear, open, honest communication. Unfortunately, sometimes my own MS cognitive impacts kick in, and communication can become quite an interesting endeavor! Words become difficult for me to find, and sometimes I substitute other words in my search – not always with the intended results! Luckily, when I am speaking to someone face-face, I can throw my hands around while I search for missing words, and the people who know me can fill in the gaps when I can’t find the word. I have learned that humour makes these cognitive lapses much easier to handle – for everyone! (Especially if I am in the middle of a situation where I really need all my faculties, including my ability to clearly communicate, such as on stage or in a board meeting!) Unfortunately, this does not translate as well in written forms of communication, such as e-mail. I have noticed that incomplete sentences and the wrong choice of words can lead to un-intended misunderstanding and confusion, rather than understanding and clarity. Oops. My bad!

“Be gentle first with yourself if you wish to be gentle with others.” -Lama Yeshe

When managing a chronic illness, such as MS & seizures or anything else…communication becomes critical, in that the medical team needs a full, clear picture of what’s happening in my life to be able to treat me in the best way possible. I personally have no problems being open and transparent in life, mainly because I grew up with so many hidden secrets in my family that I abhor any form of “skeletons in the closet” mentality. Not everyone is like that, I know. But I have found, especially with the medical teams over the years, that you have to be willing to mention the “unmentionable” sometimes, or they don’t have the big picture and cannot accurately treat you. For example – if you suffer from pain on a daily basis, but out of pride won’t admit to any pain or minimize how deeply the pain is affecting you, for fear of some kind of perceived judgement, your doctor cannot know how to accurately help you. Or if you suffer from depression, but neglect to mention to the psychologist that you are going through job-loss or marital break-up, well the doctor can’t make a correct assessment and advise you properly. Or, if you are experiencing sexual difficulties, but never bring it up – well, you can end up with more than just sexual difficulties! I still remember the first time I brought up sexual symptoms of MS to my neurologist, and was faced with a very uncomfortable doc and no clarification. Later however, an MS & Sexuality seminar was created by that doctor’s clinic! What does that mean? It means that enough people asked the tough questions so that the need for information was clearly communicated, and the need was filled by clearly communicating to patients via the seminar.

When it comes to sharing and communicating with family and friends, that is a critical part of managing any chronic illness – they are your primary support system. I am not talking about a daily whining session, complaining all the time about what’s not working. Nor am I talking about taking out frustrations by unproductive rumination over perceived losses. I am talking about sharing personal truth, in as positive a way as possible – openly, honestly, non-judgementally, including the good, the bad, and the ugly, in an effort to maintain clarity and authentic understanding. I am talking about clearly communicating any necessary information to enable them to help you, and vice versa.  I am talking about being vulnerable, and listening to not only your own words, but the words of those you love.

And when you do have instances when your communication skills were not as polished as you would normally like – that’s ok. You are only human, after all! Learn from the experience, remedy or change what you can when possible, and move on.

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others. ~ Tony Robbins”



The Trials and Tribulations of Getting Diagnosed!

“Worry never robs tomorrow of it’s sorrow. It only saps today of it’s joy.” -Leo Buscaglia

Navigating the medical system while getting diagnosed with anything can be an interesting journey into the trials and tribulations of worry, anxiety, fear, confusion, and uncertainty. Even when you get a diagnosis, you sometimes get un-diagnosed then re-diagnosed when you see new specialists! For some wild examples, see my previous blogs about being undiagnosed by a different neurologist then re-diagnosed…then again this year…my MS diagnosis was questioned by a new specialist, and re-confirmed by my regular neurologist.

You see…I have MS – no, now it’s a brain tumour. No, wait – Now it’s MS. No, wait – now it’s possibly MS and more, maybe still a brain tumour, maybe a genetic tumour disorder. No, wait – Now it’s MS and a seizure disorder…but it’s complicated.

Frankly, I feel blessed that I have a scientific side to me that allows me to question doctors and medical specialists with no fear, no apprehension, and all the confidence of a know-it-all science geek. Geeks rock, eh! A lot of that confidence I have learned through some pretty hard knocks over time, and some very real frustrations, but that is part of this journey we call life.

Recently, I had the dubious pleasure of undergoing a sleep study to determine if I am having nocturnal seizures. Quite the experience to be hooked up to electrodes and straps and clips, then “tucked” into bed as you are plugged into the wall. Then a quick “nighty-night” and the door is closed, leaving you staring in the dark at a little red light – the camera that is watching you. (I swear, if anything weird turns up on You Tube…)

Will that help further my diagnosis? Well…maybe. Maybe not. Right now, my epilepsy neurologists think I might not have MS due to my atypical brain scan, but that I do have a seizure disorder and maybe something else that looks like MS. Meanwhile, my MS neurologists say “P-ffft” to that…that I do indeed have MS as confirmed by the spinal tap results, symptoms, and brain scan. (A possibly quick way to let the docs settle the academic question of MS or not MS would be to let them biopsy my lesion…but, I think a needle in the brain is a bit of overkill for academic reasons, don’t you?)

I don’t care whatcha call it – just let me get on with my life, eh? I’m busy living here!

You see – that is often the hardest part of waiting for a diagnosis: getting on with your life. I have learned over the years to just let the medical teams battle it out on their own while I get on with the business of living my life. Whether you are awaiting a diagnosis for something small or big – the wait can be very difficult.

How to get through the long Diagnosis:

1. Know that no one is better qualified to know about you than you.

2. Gather your own information. Read. Surf the ‘Net. Knowledge gives us a sense of personal control – if nothing else that helps you manage your reactions.

3. Practice patience. There will be set backs, successes, frustrations, little glimmers of light at the end of the tunnel.

Yes – doctors know alot of stuff. But doctors are only human – and they are just as prone to human foibles as the rest of us, including making mistakes or incorrect assumptions.  Nobody knows you better than you do. Keep that always at the top of your mind. Be willing to ask the uncomfortable questions, both of your medical team and yourself. The answers may surprise you.

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown