Monday, March 31, 2014

National Multiple Sclerosis Awareness Month || American Cities Show Their Love

These images do my heart a lot of good.

Boston MS Awareness

Times Square MS Awareness

Salt Lake City MS Awareness

Seattle MS Awareness

Vegas MS Awareness

Chicago MS Awareness

Niagara Falls MS Awareness
Minneapolis MS Awareness

Sunday, March 30, 2014

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want


Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.

(see Part One: Steel yourself, look away from the belly button and cut some cords)
(see Part Two: Gratitude, going outside, the Paradoxical Commandments and the New You)


7. Stop worrying
One of the most common behaviors that follows on the heels of an MS diagnosis is the seemingly incessant need to worry! Stop it! Others smarter than me have already addressed this bugaboo:


  • Worry is a cycle of inefficient thoughts whirling around a center of fear.--Corrie Ten Boom
  • Worry never robs tomorrow of its sorrow, it only saps today of its joy.--Leo Buscaglia
  • Our fatigue is often caused not by work, but by worry, frustration and resentment.--Dale Carnegie
  • It makes no sense to worry about things you have no control over because there's nothing you can do about them, and why worry about things you do control? The activity of worrying keeps you immobilized.--Wayne Dyer
  • If you know how to worry, you know how to meditate. It means to think of something over and over.-Joyce Meyer

Anxiety and worry are two things that really need to be addressed if you are going to move forward with optimism. They both take up way too much energy to ignore and may require that you seek out counseling to conquer them. Please do so, if necessary.

8. Learn to expect and to live with uncertainty.
People who grew up in truly dysfunctional households probably already have this skill in hand. I know someone who grew up with a loved one who was/is very likely bipolar, but their loved one refused to acknowledge it (which means their mood disorder remains, to this day, untreated).

My friend's childhood was a series of days in which he walked on eggshells in his own home. Talk about uncertainty. If he didn't walk on eggshells, he could easily attract the wrath of his mood disordered loved one. This is how he moved through childhood... tentative, leery, expecting the worst while hoping for the best. Don't feel sorry for him; from this, he learned survival skills by way of necessity. Now that he has MS, he knows better than to demand that life be predictable, but because of the unfortunate circumstances of his childhood, he also knows how to keep moving forward anyway.

However, this isn't the case for a lot of people, I'm discovering as I move through different forums and hear people's different stories about how they are dealing, or not dealing, with an MS diagnosis.

Others can be way more challenged to deal with the loss of control that uncertainty possesses. You can't control anything in life (with or without MS)... not really. You can work hard and still lose your job. You can walk across a quiet street and get hit by a bus. You can try to have children over and over again without success. You can practice an art or craft and never master it. You can tell someone you love them a million times and still lose them because they don't believe you. You can make all the best laid plans o' mice and men and still find yourself in the center of a tornado where everything you cobbled together in your life is lost.

How you deal with this uncertainty depends upon how you relate to the way you manage time, energy and resources. The more flexible you are with your time, energy and/or resources, the easier it will be to manage uncertainty. But if you live by a rigid and inflexible schedule, if you still continue to "push through" periods of fatigue because you still believe you can (P.S., the secret is out! With MS, you can't), or if you are stingy when it comes to using your resources to guide changes in your life (being willing to spend more money for convenience products or pay for help, for instance), then you will be challenged to manage the uncertainty that comes with MS.

A suggestion here... make some plan Bs for specific situations in your life where you know that uncertainty can derail you. In example, make contingencies for days when you're hit by a wave of fatigue or a major migraine or temporary blindness in one eye. It may happen on that day when you had major plans (going to work, taking care of a lot of complicated errands, volunteering for your kids school, attending a critical board meeting). A plan B is your way to be part of those major plans even if you are waylaid by MS symptoms.

You could, for instance, work with your boss to make up for lost time at work or issue a protocol for rescheduling or reassigning tasks as a plan B.

You could ask for help with your errands from a handful of friends who have offered their support in the past; make a plan B phone tree, even, for such situations.

You could have a backup volunteer in place for those times when you can't do the school bake sale after all.

You could attend the board meeting via cell phone or iPad or get someone to record it or read your presentation in your stead.

Some of the most successful people I know in life are those who regularly anticipate the need for a plan B and use it when something happens. Not just MSers, mind you, but people in general who see the value of moving forward and not letting obstacles get in the way. You don't always have to jump over the hurdle, see? You can always walk around it, hire someone to do it for you, or push the darn thing over and walk ahead. There's more than one right way to do something.

This is not to say that a plan B will always fix a problem. Sometimes MS hits and there's nothing you can do. Then your plan B really needs to be one of surrender and acceptance; tomorrow will be another day to try again.

9. You don't have to smile all the time!
It's okay to admit that you feel like shit. It's okay to say, crap, I need help today. It's okay to recognize that your energy is nearly depleted even if you just got out of bed and, acknowledging this, go back to bed. You don't have to be Miss Happy Face all the time. That's perpetuating a lie. People who only see you has Miss Happy Face will not have an accurate portrayal of MS, which is a disservice to all who do suffer terribly at the hands of this disease. You have permission to feel grumpy. You have permission to cry. You have permission to be snarky and to call the disease nasty names. You even have permission to be annoyed by well meaning people who seem to argue with your diagnosis when they say "But you look fine!" when you are feeling Not-So-Fine-At-All.

You didn't ask for this. Still, it's up to you to decide how much grace you want to apply toward managing it. Some people are saintly about it, but most of us are more provincial... we get pissy or depressed or disappointed. And it takes its toll, for sure. People who put on the perfect happy face and never complain are repressing legitimate emotions and denying themselves an opportunity to deal with the dark side of their chronic condition. It's normal to feel negative emotions, even healthy. Don't shortchange yourself an opportunity to more precisely hone your coping strategies... by getting these feelings out in the open, acknowledging them and dealing with them, you are going to be a much stronger person. If you don't, you can only expect resentment, anger, frustration and outrage to consume you over time.

But you don't have permission to hurt others. Responding to their insensitive comments with information and education is a far better approach. And you don't have permission to lash out or to make comparisons with other people's pain or health issues. Comparing apples and oranges is never helpful for anybody. And you definitely don't have permission to use your condition as an excuse to make everyone else around you miserable. Nobody ever has the right to do that, no matter what's wrong with them.

Just be honest and keep it classy. If you are having a crap day, and somebody asks how you are, and you know they can tell you are having a crap day, just say it: "I'm having a crap day." Shrug. Move on. Do or don't do as determined by your body and your energy level. Don't make it everybody else's problem, just find help when you can, defer what you can, and tend to your situation until it turns...

Because with MS, it usually does turn itself around... three days of blindness in one eye forces you into bed and then, boom, you can see again, your headaches are gone and you feel great! We often focus only on our relapses but how often do we celebrate the end of relapses and the beginnings of remissions? If you have energy and you feel good, use it while you can! And if you have nothing to work with, well, then it's time to lie fallow until the pendulum swings back in your direction. For the vast majority of MSers, symptoms come and go and our biggest job is to just manage them. That means making the most of the best days and riding out the worst ones.

And finally...

10. Choose.
Repeat after me. I have MS, it doesn't have me.

People all around you are dealing with chronic illness, not just you. They are diabetic, they have asthma or terrible allergies or arthritis or fibromyalgia or mood disorders or a host of other health problems that can create barriers to living a full life. Find those people, ask them how they push through it all. The fact is that multiple sclerosis is two words, not a sentence! And you still have opportunities to choose how to live your life. You can set your terms. You can even revise your terms. It's all up to you, as long as you remember that you have a choice. You can choose to live with MS or be its victim. What will it be?

MOST PEOPLE WITH MULTIPLE SCLEROSIS
LIVE TO THEIR ANTICIPATED LIFE EXPECTANCY

Given this fact, why choose to be its victim?

Here is where choice is everything: you can choose to curl up into the fetal position and stop living, or you can choose to move forward hesitantly, or you can just decide, what the heck, I'm just going to go back to LIVING MY LIFE because there were always obstacles to whatever it was I wanted to be doing anyway, EVEN BEFORE DIAGNOSIS.

Even those with extreme disabilities can CHOOSE to continue to do what they can do, can CHOOSE to focus on ableness, can CHOOSE to keep moving forward as a whole human being. Watch the Special Olympics sometime. Be inspired. Even better... be empowered.

When you actively, consciously choose to move forward with positive energy and optimism, you are choosing to live an empowered life. An empowered life is lived when you are educated about your challenges and have come to accept them and persevere in the face of them.

MS is only one obstacle of many that can befall a human being. If you learn to live your life believing that obstacles are opportunities to learn, grown and improve, then even something as monstrous as MS can't keep you from living the whole, rich and interesting life you deserve.

Saturday, March 29, 2014

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 2: Gratitude, going outside, the Paradoxical Commandments and the New You

Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.

(see Part One: Steel yourself, look away from the belly button and cut some cords)

3. Express gratitude.
When you consciously count your blessings (I mean daily), you reset your focus to looking for the good in the world. This is not a one-way ticket to Pollyanna-ville, people. It's retraining your attitude. The world can throw its worst possible ever crap at you, and you can't control that. But you CAN control how to deal with it. And attitude is how that happens.

Take a journal (or make a digital journal) and spend 5-10 minutes a night sharing what you are grateful for. Need prompts? I have included a list of prompts below. We often forget all the awesome things that we encounter in the course of a day; a short list makes these easier to recall.

List of Gratitude prompts (feel free to cut and paste onto a sheet of paper and insert into your journal)

  • Identify people who made me smile or laugh or feel great today... and share why
  • Describe something beautiful you encountered in nature today
  • Did you notice any "missing" symptoms or side effects today? Celebrate them here!
  • What or who inspired you today? 
  • What sensory experiences were pleasurable for you today? Food, fragrance, touch, music, imagery, textures, sounds, spoken word
  • What media experiences were pleasurable for you today? Movies, television, podcasts, online activities, games
  • What social experiences were pleasurable for you today? Face time with friends, silliness online, family togetherness, special occasion or holiday, interaction at work, conversations with perfect strangers
  • What physical experiences were pleasurable for you today? Physical therapy, walking, trip to the gym, yoga class, bicycle ride, dancing, work
  • What soulful experiences were pleasurable for you today? Meditation, creative expression, attending a holy place, chanting, prayer
  • What terrible things have happened elsewhere that have made you grateful for what you have today?
  • What did you do today that made someone else happy?
  • What did you make today that was original? Cooking, artistic composition, gardening, construction
  • What places did you visit today which inspired or nurtured you?
  • Name one simple pleasure or success you encountered today... could be a "good hair" day or hitting all green lights on the way to an appointment or seeing the trees budding for the first time
  • What parts of your body, mind or soul worked extremely well today?
  • What relaxation activities helped you today... could be yoga or listening to music or taking a lavender bath or even having a martini or going to a comedy club, as long as it left you feeling better afterward
  • What do you like about your house today? your neighborhood? your town? your region? your state? your country?
  • What animals left a positive impression on you today?
  • What do you have today that you cannot live without? 
  • What gifts were given or received by you today?
  • What challenges today gave you insight into your inner strength? 
  • If you had a really rough day, try to find one good thing that happened all day. Big or small, write it down and tell it "Thank You."
  • What activity did you do today that you feel you are not good at, but you enjoyed anyway?
  • What challenged you today and how did you overcome that challenge (if not completely, then partially... making an effort and failing is STILL progress, after all)
  • Did you experience a triumph over some aspect of your MS today? What was it?

4. Go outside and play.
Great advice NOT ONLY for children. Fresh air, sunlight, even the diffuse light that presses through overcast skies is nurturing for your mental health. Dress for bad weather. Just do it. Even if only for 5 minutes. Or if you can't go out in it, drive in it. Ride in it. The point is to leave your house, even if you just go sit on your back porch.

Being out in nature daily (or even just leaving your house to go to the store!) is really crucial to keeping positive. It's a huge mood booster. It means that we might have to clean up, make ourselves presentable, which also has the impact of making us feel more put together, like a good hair day. If you're having a good hair day, do you stay inside? No! You go out and show it off!

I always used to cringe at the quote that a woman need only put on lipstick to feel better, but now I know the inherent truth behind that idea: if you prepare to go out into the world, you WILL go out into the world. If you hang around in pajamas all day, what are the chances? Next to nil.

Related to this are two other dynamic options for MSers:

EXERCISING is hard when you are fatigued and/or in pain. Find even the lightest exercise possible and just do that. It's still better than not exercising at all. If you find yourself sitting all day or laying on the couch, and you have mobility, get up and walk around. Break up your idleness with trips to the laundry room to do a load or two, a trip to the kitchen to put some dishes away, or a trip to the bedroom to make the bed and put stuff away in your closet, or a trip to the mailbox, or a trip to the backyard to pull up some carrots. Find an activity and DO IT. I would rather do any activity with earbuds crammed into my head, listening to comedy podcasts, so that's one way I get myself going.

The point is to mix things up so you aren't prone and bedridden unnecessarily. Many MSers cannot move about, for sure, but many CAN, yet don't. They are afraid to, because they anticipate pain, discomfort or unpleasant side effects getting in the way. I know I hate to imagine going for a fast walk where there isn't a bathroom nearby. I've been stuck out in the middle of nowhere with a major urge before, and so I either walk in parks or downtown where I know of public restrooms, or I go to the woods and walk and, well, pretend that I'm a bear when nature calls and go off trail. (Haven't been caught yet.) Fanny packs, however unfashionable, are useful for preparing for this, by the way.

I'm not asking you to go out and run a marathon here. I'm saying, okay, if you feel like you need to stay where you are because you have digestive problems, then walk up and down the stairs every hour. Do some spinal twists. Practice some breathing exercises. Lift some canned goods like weights while sitting and watching TV. Go out in the garage and jump rope, counting as high as you can until you can't jump anymore.

JUST. DO. SOMETHING.

PLAYING GAMES is a better way to view activity for me. I hate exercise and the idea of the gym, but I love games. I'm more likely to exercise if I'm playing volleyball or trying jumprope tricks or challenging myself with Wii yoga or going for a swim at the beach or meeting my husband at the pickleball court. I'm headed to Hawaii soon and think I will give paddleboarding a shot.

Other kinds of games matter, as well. Board games. Game shows. Brain games played on your iPhone. Jigsaw puzzles, crosswords, Sudoku, card games. Yard games like lawn bowling or bean bag toss or badminton. They could be social games or solo games. They could be games that take forever or are ongoing, like Dungeons & Dragons, or they could be quick dice games played at a local coffee shop while you wait for someone to join you.

Games are about having fun, testing your skills, flirting with chance, overcoming obstacles, creative problem solving, laughing and achieving escape.

5. Shut up and get out of the way.
Sometimes we can be our own worst enemies. Try to notice any negative self-talk you engage in. It could be something you mutter under your breath, or it could be a self-deprecating comment you make in jest before a group of friends, or it could be a "voice" in your head telling you that you aren't good enough, healthy enough, smart enough, worthy enough, etc. Stop doing this. Consciously, even vocally, express it like this: "Stop it!" Don't judge yourself, don't feel bad if if happens. Just acknowledge it's there, then tell it to leave. You will, eventually, stop the negative self-talk once you are aware of it.

Getting out of your own way is a similar activity. We often stand in our own way, mostly out of fear. We decide that we can't exercise because it will hurt, for example, or we decide we are too old to learn something new, or we decide we aren't the best at something, so we quit doing it altogether. What we need to do is just do it anyway. Go to the gym anyway or take that walk. Go lightly. Don't overdo it. Just do it. Or... take a beginning foreign language class or start playing a new instrument. Expect failure. Expect to learn differently from your younger counterparts. Just do it. Or... learn to accept that we can't be perfect at anything and remember that it's the journey and not the destination that matters. Do your best at a task, and practice admiration for others who do it better. Share what you know with someone who is not as good at you.

Every day, you can decide you aren't strong enough or smart enough to go after something you want. What's stopping you? Well... you! Tell the hesitant You to move out of the way and just go for it anyway. Expect to make mistakes. Laugh at yourself if you do. Give yourself a brownie button later, regardless whether your efforts are met with success. Trying matters.

Inertia is a huge part of passive living, and it's often accompanied by fear. If there's something you are afraid to do, write it down. In example, write: I AM AFRAID TO ASK FOR HELP. Then, speak it out loud: "I am afraid to ask for help." Then write: I AM GOING TO ASK FOR HELP ANYWAY. Then, speak it out loud. "I am going to ask for help anyway." Do this enough times and you will find you are less and less afraid to ask for help and more and more comfortable with actually doing so.

I love the Paradoxical Commandments, which are related to this idea that we should just look askance at fear and do the things we are driven to do anyway. Check them out here.

6. Let go of the Old You, embrace the New You
The pre-diagnosis You is no longer You, it is a figment of your past experience which may lend great wisdom to things you do now or will do in the future. However, it is no longer You. You are a new person, reborn with a new reality.

No, you didn't get to pick the reality, but so what? When someone loses a loved one, they are also a new person, and they didn't choose that either. This is LIFE. There are lots of things that happen to people unexpectedly, and they can all either SUCK or they can be life defining in a way that can be made positive, as long as you embrace the opportunities inherent in any kind of change.

MS is not an excuse to just wallow in the past and not move forward. Instead, you need to look at what this New You has to offer. Not just as a worker-bee or fulfilling any other role to any other person or organization. You very likely have had to step out of these arenas and/or roles partially or completely. But the New You has valuable insights, experience, ideas, talents that can still be applied toward making the world a better place.

Sometimes someone will say that an MS diagnosis can really be thought of as a gift. And when someone says that in an MS forum, they are sometimes shot down by others who think it's ridiculous that any kind of diagnosis for any kind of chronic health condition could ever possibly be considered a gift.

But I do think that change is about opportunity as much as it's about loss. Yes, I have grieved over the idea that many of my life's dreams might be wiped out by this diagnosis, because that is what you do when you grieve. You let loss and impermanence roll around in your heart a while until something comes and flushes it out and then you move on. That something is usually an amalgamation of the highest of concepts: hope. Hope does return after loss, and if you can nab some, you need to stitch it to your soul so as not forget that it's always there, just in case.

Hope and dreams... these are not just abstractions, they are the seeds of anything we can aim for, goals, a horizon we build for our life's path. We just have to harvest them wherever we can and plant them when the time is right... usually after a period of fallow grief.

Why not embark on your life's path by making yourself a revised Bucket List of things you want to do or experience, places you want to visit, people you want to meet or spend more time with? You'll be surprised to find that the vast majority of things on this Bucket List are still achievable even if you have MS. Maybe some will not be 100% attainable--like, say, climbing a mountain--but you might take a training course in how to do this, or you might shoot for a similar goal, like hiking in the mountains overnight. Wouldn't it still be cool to hike in the mountains overnight, even if you couldn't climb the mountains outright? I think so.

The act of surrendering to a new reality can be challenging, I know. But once you realize that holding on to the past doesn't change the present, you'll encounter a sense of liberation. Clinging to the Old You is rather like tossing yourself into a huge bonfire, eating up all your energy, leaving only a few pathetic ashes to witness you were ever there. Don't do that to yourself. Step away from that fire, hold on to the flames that are perpetually kindled in your heart, your mind, your gut... you have everything you need within you to use these little flames to inspire new directions for the New You. It might mean getting some help from a counselor or therapist, but so be it. If you can arm yourself with the powers that the New You holds, you can live a ginormously enriching life.

Coming tomorrow, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want

Friday, March 28, 2014

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 1: Steel yourself, look away from the belly button and cut some cords

People often comment on how remarkable it is that I stay positive even though I have MS. Well, it's not exactly the reality... I just make a bigger effort than most to approach my diagnosis on my own terms.

I have days where I'm really pissed off by this new course in my life, and some days when I'm saddened by it. I feel anxiety about my future in a way I never used to. It's not all smiley face stickers and thumbs up in my neck of the woods.

I used to be a creativity coach, and I guess I'm blessed with all of the lessons I've conveyed in that arena because they also apply here. People who are creative (in my case, I worked primarily with artists and writers) are constantly fielding rejection. Rejection sucks if you are a creative person funneling your entire identity into works of expression only to find out that someone else doesn't think they are good enough. That's like saying "you are not good enough."

If you've never created something, and then followed through like these people do--by asking someone to publish/produce/present it as part of a collaborative agent like a magazine, a performance or a galley--then you can't know just how shitty it feels for that collaborative agent to turn around and say, in effect, "You suck." And not just once in a lifetime, but many times a week for the more active and prolific creatives among us.

I have been rejected countless times. Probably in the thousands by now. I still write, and I still make stuff, and I still believe in myself. And I still get rejected. But I've been doing this for YEARS, and I've gotten used to it. That is not the same as liking the process or succumbing to its painful realities, but it does show that, over time, you can develop some personal steel and drive to move forward regardless what life throws at you.

MSers who have had MS for a very long time... they've been "doing MS" for YEARS as well, and more or less, they have also gotten used to it, which is not the same as liking the process or succumbing to its painful realities...  it DOES show they have developed their own personal steel and drive to move forward regardless what life has thrown at them.

Here are some things I've taught my clients in the past which are easy to apply (almost seamlessly) to the challenges MSers face every day.

1. Forget you have a belly button.
It's called navel gazing, and it's a kind of unhealthy focus on oneself to the point that you lose perspective. It happens A LOT in forums where everyone is complaining about their symptoms or side effects of medications or all the bazillion other problems that hitch a ride with an MS diagnosis.

Stop it. Stop going there. Staring at your problems makes them bigger; it doesn't make them go away. Take a week off from forums; you will be surprised at how much better you feel because, guess what? You aren't focusing on your pain or discomfort or the lousy other things that are part of living with a chronic disease.

When you choose to focus on other aspects of your life, you might not "forget" you have MS, but you will push its reality further back as you push forward your awareness of other GOOD things in life, such as beautiful weather, a great meal with your family, a fantastic movie, laughter with friends over coffee, a dip in the local pool for a therapy class.

Even the simple act of noticing all of the world outside yourself is becoming part of the larger world again. You can't notice it if you are staring at your belly button.

2. Cut some cords.
Along with this idea of looking outside yourself, I like to blend in the notion that we should actively choose who we spend our time and energy with and what we spend our time and energy on. Time to cut some cords, people!

For those people in your life who require too much emotional energy and who never reciprocate, snip snip snip! Stop calling them. Unfriend them on FB or block them. Don't accept their invitations. Be kind to them when you do see them, but let the cord out, looser and looser and mentally cut it when you are ready.

For those people in your life who you can't cut away because of work or family obligations, practice the fine art of feeling sorry for them because, frankly, if they are that hard to be around, it's because of some misery that has nothing to do with you, even if they project it on to you. Having compassion puts you on the high road, a much better place to be because you can live with yourself knowing you have shown love and empathy and kindness even to people who have been hurtful to you.

For those tasks in your life that take up too much time and energy and don't require that you be the only one doing them, snip snip snip! If it's a volunteer position, politely step away and help fill your shoes if possible. If it's a job you hate, try to find a new one while still employed, and give the professional two weeks' notice. If it's household chores, get help from family and friends or pay someone. If it's projects you once loved but don't really love anymore, or can't even do anymore, offload them to people with stronger interests.

For those tasks in your life you have to continue to perform because of family or work obligations, get some help, find some alternatives that free up your time and energy or reinvent your role so that you don't have to manage the same volume of task mastery.

All this to say that re-engaging in the larger world outside your own inner one should be energizing, motivating and inspiring. If people and tasks don't fit these qualities, lose them or remodel them on your own terms. Then you will have an easier time being part of the larger world, and that will go a long way toward making you a happier person even with MS on board.

Coming tomorrow: Part 2--Gratitude, going outside, the Paradoxical Commandments and the New You

Thursday, March 27, 2014

National MS Awareness Month || ANNIVERSARY: Preliminary Diagnosis


One year ago today, I got a call from my primary care physician telling me that he and the radiologist concurred, that they examined my enhanced MRI and both agreed that I had evidence of lesions on my brain consistent with MS.

Multiple Sclerosis.

I was at a coffee house waiting for my mother in law to be finished with her hair appointment. I was doing homework and had to go outside to take the call because it's a known bad cell zone there. I saw my doc's phone number on the caller ID and left all my stuff at the bar, including my Kindle and my wallet. I couldn't get out of that noisy bar fast enough to hear what he had to say.

I remember my voice being high-pitched and overly loud when I said, upon hearing the news:

"O-o-o...K-a-a-a-y..."

When I'm nervous I laugh or chuckle. I didn't do either. Instead, I took a deep breath and said, "Well, at least it's not a tumor and it's not Parkinson's."

Which the doctor happily confirmed.

Please note, this was the date of my preliminary diagnosis; I still needed to go in for further tests to confirm their findings, so while I was confident that my docs were accurate, I still had a little tiny thread of hope in there that they might be wrong. But those clarifying diagnostic tests were yet weeks away. So... How did I respond in the meantime?

Relief. Finally. An answer.

Denial. Okay, maybe the next, more intense tests will be more conclusive and maybe they were wrong about those white spots on my brain after all.

Fear. Crap! What does this mean? Crap! Crap! Crap!

Resentment. Why now? I just made a huge career change! Now what do I do? Was all this for nothing?

Examination. How long have I had these symptoms? What clusters of symptoms do I remember? What can I find out about MS now, and will scrying WebMD via Google make any of it go away? (No.)

Preparation. Hmmm, time to re-examination the diet, exercise, sleep and other health patterns I control to see how well I can fight back. Because I'm not going to take this lying down.

Sadness. I don't wish I was in a wheelchair, but I do wish people understood that my brain is not working right and I can no longer be 100 percent the person I used to be, which was all intellectual and clever and such. My brain is WHO I AM. My mind is now a steel trap with a lotta holes in it. And that makes me want to cry because I'm a writer and a thinker and a speaker and a teacher and I need my brain to not turn into a sponge because then, WHO WILL I BECOME?

Acceptance. Fine. I have friends with MS, and they are doing okay. I can't change this reality. I can help myself to feel better and to keep the disease from progressing, but I can't make things better by sitting around all day gazing at my navel. I am better off focusing on what's working and what's sustaining me in life, not on the possibilities of what bad things could happen. No reason to curl up into a ball and stop living. I have a great job, a mostly supportive family, amazing friends and, what's that? Remission? Yes, by gum, I think I might be in remission! Count your blessings, wouldja?

Yeah. I lost some sleep, my appetite. I cried. I laughed and made jokes about it. I read WAY TOO MUCH on the Internet. I talked to my friends with MS. I began to interpret every little odd physical feeling as a major symptom. There were days when anxiety built up inside me so much that I couldn't take a full deep breath without thinking I might explode. Always, there was the stinging reality that I could die, not from MS, but like an AIDS patient, from complications of the disease.

And I developed what I call "diagnosis brain," which is kind of like pregnancy or cancer brain... you develop a sudden, irreconcilable awareness that your body is now on a different, one-way journey and there's no going back to that old normal. Suddenly I'm walking around in a new normal, which is not normal at all, but foreign. Think Dorothy and the Wizard of Oz.

Better yet... Did you see Gravity? I felt like I was out in space when I got my diagnosis, like Sandra Bullock, hooked up to a suit, breathing, watching everything stable around me break apart, but still having some hope that there were still anchors out there for me to latch on to. I just had to use everything in my possession to figure out how to do that, while not knowing about what other surprises lay in wait for me (good and bad).

I'm still not sure even this truly captures what it feels like to have diagnosis brain. I'm happy to say that I mostly don't have diagnosis brain a year later. And I'll talk more about that another time.

I'll end this passage saying just this: I am grateful it only took a couple of months to go from preliminary diagnosis to confirmed differential diagnosis. I have friends who are still trying to figure out what is wrong with them. Autoimmune disorders are like that: insidious mimics which are hard to capture in tests. I have two dear friends walking that path right now, and I ache for them, because at least my pathway from the old normal to the new normal was finite. That untethered, out-in-space feeling of limbo is nothing I care to endure again any time soon.

Wednesday, March 26, 2014

National Multiple Sclerosis Awareness Month || MS bloggers, a gallery

Here's a tribute to many (not all by any stretch!) of the bloggers, artists and imaginative others out there using the Internet to inspire others with MS... through their own creative pursuits, their research efforts, their personal stories. No one can say the information superhighway didn't bring about the possibility for infinite community, and the MS community is one such gift, filled with lovely, talented, generous and driven to make the world a better place regardless what challenges they face. My hats off to all y'all.

CLICK ON THE LINKS IN THE CAPTIONS TO GO TO THESE BLOGGERS' HOME PAGES. And tell 'em I sent ya!

From essayist Joan Wheeler at Disruptive Women in Healthcare ||
A Short in the Cord: A Retrospective on Living and Coping with Multiple Sclerosis
"Attending BlogHer with a Disability" by Cathy Chester,
from the blog, An Empowered Spirit

"69th St. Transfer Bridge." From the blog, Wheelchair Kamikaze
From the blog, My New Normals
From blogger Matt Cavallo
From the blog, The Lesion Journals
From the blog, Brass and Ivory: Living with MS & RA
"Freedom" by Cathy Aten, from the blog, Living Undone
From the blog,
Kaleidoscope Muff
From the blog,
Navigating the Journey of MS
From the blog,
Living! with MS

Tuesday, March 25, 2014

National Multiple Sclerosis Awareness Month || Remyelination, or filling in potholes


I think of my nerves as pathways all around my brain and body. When MS attacks those nerves, they leave big ol' holes. Having lived a chunk of my life in Chicago, I liken these divots in my nervous system to that city's legendary potholes (hence the name CraterBrain, eh?).

A cure for MS isn't anywhere near a reality, just like there is no cure for the expanding and contracting road surfaces in places like Chicago where the weather endures so many extremes. However, in Chicago, they don't just let the craters takes over... they fill in their potholes.

What about me? Can I fill in my potholes? (And I don't mean by inhaling Superglue or peanut butter or Spackle or asphalt.)

There's a physiological process that occurs during MS called demyelination. It's the response of the nervous system being attacked by the immune system. The outcome? Holes in the fatty coating around our nerves.

Potholes.

There's another physiological process that all human brains can perform to a certain extent: remyelination. This is where brain hires its own road crew to go in a fill in those potholes from time to time. The human body is quite remarkable in the myriad ways it fixes itself or compensates when parts are broken, eh?

Even within the brains of MSers you can find some capacity for the brain to fill in its potholes. Part of the strategy for using Disease Modifying Therapies (DMTs) is to give the brain and body a chance to go into remission so the brain and body can send out its repair crews. However, if we're in a constant state of inflammation (part of the experience of relapsing), that's more or less like the weather being too extreme to commence pothole filling. The work has to wait until the climate improves.

What if we could fill actual potholes in actual roads regardless of the weather? Wouldn't that be awesome?
A miracle?

And what if... what if our brains could do the same kind of metaphoric repairs regardless of our condition (relapse v. remit)? Wouldn't that be awesome? A miracle?

Common sense tells me that would be ALMOST as good as a cure.

Guess what? Chicago's roads aren't going to have any miracles for pothole filling any time soon... BUT:

MSers! There's a bunch of research out there suggesting it could be possible for us to remyelinate! Here are ten links to ponder. Some are research studies, others are press releases or articles or abstracts. What they are all pointing to is research that could pave the way (pun intended) to brain injury repair, not only for MSers for for anyone who has suffered neurological damage and could use some patching up. Stay tuned!

3.18.2014 -- Science Daily
Stem cells from muscle can repair nerve damage after injury

2.9.2014 -- MedicalNews.Net
Researchers identify protein that promotes growth of brain cells damaged by MS

n.d., 2014 -- Mayo Clinic Laboratories: Multiple Sclerosis
Immune Promotion of Remyelination Optimization of Antibody Enhanced Remyelination 

n.d., 2014 -- Myelin Repair Foundation
MRF-008: Potential MS Drug to Protect and Repair Myelin

11.2013 -- National Institutes of Health
Promoting Remyelination in Multiple Sclerosis—Recent Advances

9.2013 -- National Multiple Sclerosis Society
Cutting-edge brain science by UCSF researcher wins first Barancik Prize for Innovation in MS Research

7.2013 -- EuroStemCell.org
New strategy for brain repair in multiple sclerosis

4.2013 -- MedicalNews.Net
Phase 1 clinical study of rHIgM22 initiated for treatment of multiple sclerosis

10.2012 -- Brain: A Journal of Neurology 
Targeting ASIC1 in primary progressive multiple sclerosis: evidence of neuroprotection with amiloride

8.2012 -- Multiple Sclerosis Trust || MRC Centre for Regenerative Medicine, University of Edinburgh
Remyelination in MS

Monday, March 24, 2014

National Multiple Sclerosis Awareness Month || Movies and TV depicting MS


You can find several movies and television programs with include characters with MS or which address the challenges of those living with MS. Check out the list below:


MOVIES

A Dream Is a Wish Your Heart Makes: The Annette Funicello Story (1995 TV Movie)

Duet for One (1986)

Eden (1996)

Edie & Thea: A Very Long Engagement (2009 documentary)

Freak City (1999 TV Movie)

Go Now (1995)

Guru (2007)

Hilary and Jackie (1998)

In Sickness and in Health (1992 TV Movie)

Swim Lessons: The Nick Irons Story (2008 documentary)

When I Walk (2013 documentary)


TV

Chicago Hope (1996)
Episode: "The Stand" (features real-life MSer Richard Pryor).

Forever Knight (1995)
Episode: "Blind Faith"

Law & Order
Lead character, Rey Curtis, played by Benjamin Bratt, is married to an MSer.

West Wing 
Lead character, President Bartlett, played by Martin Sheen, hides MS, then comes out about his condition.

Sunday, March 23, 2014

National MS Awareness Month || On pill popping, divisive diets, pharmacy salad and the potential for snake oil


Having MS is a bit like tiptoeing along a double-edged sword.

On the one edge, I've been disparaged by perfect strangers for being a "pill popper" (their term). On the other edge, because there are so few treatments, having a chronic incurable condition like MS requires that you do everything you can to help yourself, and that means often taking risks. Damned if you do; damned if you don't.

On being a Pill Popper
I take a crazy amount of meds everyday (maybe as many as 21 different ones). Here's how it breaks down:

Prescriptions: 8 (some twice a day, some once a day, some as needed)
Why do I take these?
1 is a Disease Modifying Therapy (DMT) for MS
4 are for nonMS health concerns or maintenance
2 are to mitigate MS symptoms
1 is to relieve side effects caused by the DMT

OTC medications: 3 (as needed)
Why do I take these? 
All to relieve side effects caused by the DMT

Vitamins and Minerals: 4 (some twice a day, some once a day)
Why do I take these? 
2 are for general health
2 are said to help relieve MS symptoms

Probiotic: 1 (twice a day)
Why do I take these? 
To relieve side effects caused by the DMT

Supplements: 5 (some twice a day, some once a day)
Why do I take these? 
2 are said to help relieve inflammation
2 are said to help with energy metabolism
1 is said to help with focus and clarity

Of all of these, only one of them is considered a "black box" medication, meaning it has the potential for high-risk side effects. Fortunately, I don't have those side effects and can't, in fact, function without this life-saving medicine. And my liver tolerates it just fine (same with my DMT).

Note that, without MS, I wouldn't be taking as many as 21 different pills a day, I would be taking as many as 6. That's the difference between a snack and a meal, folks. (Yes, please laugh, I'm trying to be funny here!)

If I were of the traditional only approach to treating my MS, I would not be taking any of the supplements. But I am of the ilk who likes the idea of fighting a war with all the weapons I have at my disposal, so I take supplements as well, as part of what is called a complementary therapies approach to MS.

There are some people who only do the complementary therapies approach. If I were to do this, I would be taking only my nonMS prescriptions, plus vitamins, minerals, probiotics and supplements, ringing in at 14 meds a day.

I'm running a numbers game here to show you that there really isn't a good argument for going with either traditional only or complementary only, if you are trying to avoid popping pills. If you're going to take 14 meds a day in the complementary approach, it's not that big a stretch to add the 7 others to my daily "pharmacy salad," as I like to call it.

This is a matter of contention between MSers, which is why I bring it up at all.

Using or not using medications to support management of disease progression or treat and relieve symptoms is a highly personal decision. I know people who take many, many more pills than I do. And I know a few who don't take any. And comparing oneself to any of these people in terms of outcome is about as useful as comparing apples to oranges to bananas to grapes because MS affects us all so very differently.

Still, people will impose their views (and I suppose I'm doing the same just by posting this blog entry) and these views will make others fearful or less confident in their choices... or downright defensive.

Allow me, at this juncture, to return to the "Pill Popper" expression...

I recently ran across a grocery checker who was trying to talk a shopper out of buying a supplement and, instead, save some money and buy a similar item from the produce department. "You don't need these," she said with such a cavalier attitude, leaving the shopper embarrassed and speechless and on the spot. "You don't need to be a pill popper." (They bought the supplement anyway. Good on them.)

So riddle me this... is someone who takes medications and/or supplements, for their own well being, now considered a "pill popper?" I've always thought the term to be disparaging and referential to people using illicit drugs like bennies or Quaaludes or any other class of junkie throwbacks from the 70s.

Okay, well, guess what? If that's the case... I'm a pill popper. And I don't think that's a bad thing.

Back to the checker: I tried, tactfully, to turn that dialog around when she started checking my groceries and was still talking about how people really don't need drugs, they just need to eat right. As if by eating fruits and vegetables, all disease could be prevented and/or cured.

Really? If that were the case, there would be no disease in the world. Right?

Sigh.

When I told her that I have a lifelong incurable chronic neurological condition that does not have a metabolic component, and can't be treated by diet alone, and when I explained to her that I know people who are lifelong vegans who still share my condition, and that we all MUST take pills in order to just function normally every day, she was the one left speechless and on the spot. I don't think I embarrassed her, I think I got her to pause and think about what she had said. Or, if I did embarrass her, I didn't mean to. She was gracious and said something to the effect that, "Oh, I never thought about that."

It's so important for people in our lives, even strangers, to stop assuming that every health issue out there is caused by some bad dietary habit we put upon ourselves, that somehow our lifestyle itself is the root cause of our own problems. I didn't ask for MS. I didn't do anything to give myself MS. I eat pretty healthfully, live a pretty healthy lifestyle. IT'S NOT MY FAULT.

Nobody ever thinks about the fact that disease is caused by more than just shoddy lifestyle choices. We have had the diet and exercise regimen crammed into our collective psyche for so long that we've stopped understanding how disease works, that you can be healthy and do ALL THE RIGHT THINGS then, WHAM, still get hit with a heart attack or an incurable illness or cancer. I know people who fit all three categories. They would be really pissed to hear anyone blame them for their health problems. Let's stop blaming victims, shall we?

I do not think it is useful or even advisable to avoid taking medications (prescribed or otherwise) if you have MS; those in my life who I know personally and who decided to "go natural" are now crying regret, rolling around in wheelchairs; they cannot hope to reverse their progression because their condition has worsened beyond their somewhat treatable, manageable RRMS to a more severe condition that has absolutely no treatment. I don't know anyone, personally, who is doing better without medications (in terms of disease progression). So I'm probably biased. But I've heard more cautionary tales from people who opted out and are paying a price for it now than from people who chose to use DMTs and whose choice made their disease progression worse. Symptoms and side effects might be intolerable for some, but no DMT is going to worsen your disease. It'll simply not work.

People will go the natural route because they have distrust of the medical establishment. Most of the time, this is caused by a general lack of health literacy and understanding of the complex system that is Western medicine. Often it's compounded by the ginormous volume of misinformation out there on the web, and our equally ginormous FAIL at media literacy to parse the good info from the bad.

Going back to my numbers, if I take 21 different meds a day, I can be (and have been) ridiculed by my own "natural" peers for being a pill popper. Except that they, too, are pill poppers, the difference being that insurance doesn't cover their cures, so they likely pay a whopping lot more for their meds than I do.

See how it can get ugly? And it does, trust me. The forums abound with ugly one-upmanship and competitive judgmentalism instead of being the support groups they were intended to be.

I'm a live and let live kinda gal. If you want to not take any meds at all and just smoke or consume marijuana for the rest of your life (that's an entirely separate contingent of MSers out there), feel free. Wanna take uber-strong doses of vitamin D and DHA? Go for it. If you want to cut all the dairy out of your diet, fine. But don't tell me my choices are wrong or call me a "pill popper." Just don't. It doesn't advance anything except division in a community that should be all about unity.

About that Pharmacy Salad...
Supplements are drugs. No two ways about it. They are drugs which are not approved by the FDA as drugs, so claims about them cannot be held up by the FDA, either. This is why they are rarely, if ever, covered by insurance payers. Many supplements are also food products, like garlic or turmeric, for instance. But other supplements come from unexpected places, like bee sting therapy and compounds derived from Chinese hamster ovaries. Each separate supplement has its body of evidence (clinical and/or anecdotal) that can show both the promise and the pitfalls of using it in a therapeutic course.

I choose supplements based on my own ability to research not only their benefits, but their side effects and potential interactions with other medications. My neuro and PCP both have a list of the supplements I take and neither of them is set against any of them, based on what we all understand about their properties. So, despite the arguments made by "natural" MSers, medical professionals are not hands-down AGAINST using supplements. What they want is for their patients to be smart about what they choose to take or do to fight their MS.

On the Divisiveness of Diets
There's another faction of do-gooders who insist that eating a Paleo or Vegan or Swank or other restrictive diet will cure MS. Yes, I said it. CURE. They are sure of it because it makes them feel better.

Um, yeah. Eating better will always make you feel better, whether you have MS or a runny nose.

I have a naturopath on my team and he bristles at the notion of a detox or restrictive diet as a road to a cure. He basically said this on the subject (my paraphrase) at a recent newly diagnosed MS seminar: All that detox or restrictive diets do is stir up all the muck and toxins you have been carrying around for years, which are probably harmless in their current state, that is, until you decide to do the deep cleanse. And then all that muck gets reintroduced into the system--the lymph, the bloodstream--and causes new symptoms which can lead to the patient feeling sicker than ever.

People, we are not cars... an oil change is not going to fix our MS.

Yet the headlines out there on the Internet point to specific diets as being cures for MS. For some, going on a healthy diet has been a wonderful help, to be sure. But dietary choices do not impact disease progression, they only impact the severity of the symptoms you have. You can have MS and NOT have symptoms. The disease is quiet that way. If you're feeling good, then all the more power to you! You are probably in remission because that's how RRMS works. If you never remit, then you probably have something more severe. But people with RRMS do, in fact, have remissions. We cannot presume that just because we are in remission and feeling better we are cured, especially by means of a diet. Tests on a diagnosed MS will always show the presence of lesions or oligoclonal bands in the CSF. Sorry, I wish the news was better, but that is the reality.

There is no cure for MS. 

The other reality is that there isn't a single diet out there that has been proven to be a workable treatment for MS. This resides in the fact that there will likely NEVER be long-range studies on large MS populations with regard for diet because they are too difficult to control. A short-range diet of 2-3 months for a limited population might uncover some suggestion of evidence, but you really can't then take that same experiment, put 10,000 people on it for 4+ years, and expect 100 percent compliance from the patients.

So, sure, yes, eat your veggies, eat your fresh fruit and your very lean meat and whole grains and beans and organics and stay away from all that processed crap (anything that comes in a box, a jar or a bag and has a bunch of other ingredients besides real food in it). That is called a Whole Foods Diet, and you know what? It's good for everybody, not just MSers, it's easy to do and you don't have to starve to feel better.

But if you want to go further than that, if you want to start throwing out the gluten arbitrarily, for instance... or if you start fasting for a week, or if you start cutting out dairy or meat with no guidance from a naturopath or a nutritionist... be prepared to muck around with something you don't understand. And be prepared to give up after a few months because, frankly, most of those diets are unsustainable and unaffordable. (I had to let my practical self in on this part of the conversation.)

Welcome the Snake Oil Salesman
The problem is really one of health literacy.

Eighty percent of people who visit the doctor's office will forget EVERYTHING their doctor told them, ten minutes after leaving the appointment. Of the remaining 20 percent, half will remember it WRONG. Only ten percent of ALL PATIENTS will do what they are supposed to do following a doctor's appointment. These are not stupid people, mind you. This large category (80 percent!) of the population is educated, makes money, lives in a decent house, eats three meals a day and sleeps in a bed. We are not talking about homeless people, or those with mental illness or those who are functionally illiterate here.

We are talking about... well... YOU, in all likelihood.

Instead, people like YOU (this could describe YOU) will go home, look things up on the Internet, find claims that promise to fix certain health concerns, get advice NOT from a medical professional but from some forum somewhere or in Facebook where NOBODY is more invested in your health than YOU. And YOU will encounter very nice-looking websites that show how the medical community is broken and poisoned and that, surprise!, the natural community (or the Bee Stings for Life community, or the MMJ community, or the Paleo community, etc.) has every answer YOU will ever need for curing what ails YOU. And YOU will say, hmmm, maybe my doctor is wrong, because who wants to deal with a diagnosis like MS? It might be better to deny the diagnosis entirely, follow a different path, with all these other people who claim their natural wisdom has cured them. Thousands of other people, all of them perfect strangers with no medical background whatsoever, people who are just words on a screen, actually... they can't be wrong... Right?

Please don't read that last paragraph and think I'm against complementary therapies. Obviously I support the notion of supplements as a potentially helpful approach to treating MS; I use them myself. I also subscribe to the practice of yoga and meditation as a means for stress relief and wellness. I also think drinking water is healthy, as is regular exercise.

What I'm against are all the claims made--without any clinical evidence at any scale--that say YOU will be cured. It's one thing to say, "hey, eat lots of kale and mustard greens, it will help YOU feel better." It's another thing to say that eating lots of kale and mustard greens will cure YOU.

So please, people, be wary of promises and language that sells the idea of a cure, especially when the same language has nothing positive to say about modern medicine. You have entered a different kind of marketplace then, where other people are going to tell you that pharmaceutical companies and doctors are making a fortune off your illness while, at the same time, trying to collect your consumer dollar by selling you something that has less than (or zero) the clinical proof of concept that at least modern medicine CAN offer.

Don't buy into the snake oil out there promoting cures for ANYTHING. Any yahoo can build a beautiful website and hire a persuasive writer to sell you a gorgeous bill of goods. It's up to you to demand the proof, though, and that means entering every adventure into complementary medicine with a very healthy dose of skepticism. Demand clinical proof; ask to see tests that have replicated the results time and again; demand to know who is paying for the tests to uncover their biases; don't accept just one small experiment with 5 people. Read BEYOND HEADLINES about what others have to say about the up and down sides of a given complementary therapy. Look at product reviews in Amazon, even.

For instance, I thought kombucha would be a good way to go, but then I read a lot about what kombucha actually does, and what it can do to someone with MS, and how this can actually really mess with body processes in someone with MS, and I decided No thank you to kombucha. My decision. I know others with MS who welcome kombucha as a treatment. Their decision. Not a risk I want to take.

Ultimately, what you do about your health is always going to boil down to you making an informed choice. Be skeptical, not only about complementary treatments, but about pharmacological ones. Ask questions of everyone, including your doctors. Demand answers. Don't be satisfied with the answers until you feel confident you understand the science behind them and feel satisfied you know enough. (Though frankly, you may never know enough. Be prepared for that, too.)

This is your health and your life; though you may not be able to cure yourself of MS, you can certainly grab the wheel and steer your boat to the right course. It really is YOU who is in charge of navigating your own health, after all. It is not fated to reside in one doctor's hands. In fact, it should NEVER be left up to one doctor: it should begin with you and expand out to a team of experts and an even larger support system.

Last word of advice: don't make your decisions based on shame (don't be a "pill popper") or fear ("that shit will kill you!") or ignorance ("don't you know anything about DMTs?"), because if you do, you run the risk of sinking your own ship when all you needed to do was plug a hole in the ballast.

Saturday, March 22, 2014

National MS Awareness Month || Fear of Hypochondria


There's a little worm that nestles into the back of your brain when you're faced with a potential diagnosis of MS or other autoimmune disorder. The worm's name is:
HYPOCHONDRIA

When I saw my doc about a year ago and asked him to take a look at these seemingly unrelated symptoms, which I felt embarrassed to even share, I told him: "I'm hoping you'll come back with a diagnosis of Hypochondria." 

chuckle chuckle... wink wink.. nudge nudge... 

But he took me seriously, bless his heart. I'm not one who steps into the clinic more than once a year for my annual exams and, maybe, a flu shot. He knew that I was there because SOMETHING WAS WRONG that I couldn't put my finger on. 

He'd had a recent encounter with that same experience himself, so I suppose that's part of the reason why he was so supportive and sensitive. After NOT BEING HIMSELF for a few months, he took matters into his own hands, found out he had cancer, ended up in brain surgery, and is now, almost 4 years later, back to himself. Probably an even better version of himself. 

So he knows what it feels like to have random symptoms that, by themselves, don't seem to amount to anything. But when they cluster together and simple daily things like, heck, going to the bathroom, are suddenly not going the way they've been going your whole life, ya gotta wonder...

I found out recently that my husband thought I was a hypochondriac before my diagnosis. Maybe for a while now. Part of me was like: yep. Of course he did, I had all these bizarre things going on with no simple explanation. This is why, in fact, many of us MSers are so freakin' relieved when we get a diagnosis... it means we aren't hypochondriacs, it's not in our heads (though, well, yes, it is! LOL), and there's objective scientific data in multiple testing that show the presence of a real disease.

But part of me was hurt to know this, though I always sensed his skepticism. How could he think I was imagining this? It makes me wonder if he thinks I'm some sort of psycho wingnut. Seriously.

And part of me was grateful that, until now, he'd not said anything about this. Not out loud. That would have been awful.

So many of my MS peers are faced with accusations that they are hypochondriacs, not only from their spouses and children and parents and other loved ones, but from their employers, EVEN THEIR DOCTORS in the face of objective data showing otherwise. 

No wonder people wait to get a diagnosis when the symptoms aren't alarmingly obvious like, say, a giant festering skin cancer or a heart attack. 

I waited. Yep. I was having parasthesias sweeping across my legs about 12 years ago. I was also experiencing leg tremors at about the same time, and endless bouts of fatigue. I totally remember this and thinking, Oh crap, I must be getting Parkinson's or something. But I *didn't* go to the doctor because, guess what? In my mind, I'm also thinking, Parkinson's is an old person's disease. I'm still in my 30s. If I go to see the doctor, my family, my husband, my doctor will all THINK I'M A HYPOCHONDRIAC.

So I waited a dozen years, which probably just progressed my disease state without treatment, silently, until about a year ago. If I *had* gone in, I would have probably been diagnosed and treated.

But I didn't. 

[WARNING: RANT ENCLOSED. You know what? This is not a problem for me, caused by me. This is a problem that comes from within our society. We need to stop being so mean and judgmental and dispassionate about each other. Yeah, Society. I'm lookin' at you. When y'all are out passing judgment on others for no good reason whatsoever, you contribute to this fear that keeps people from truly doing the right thing. Society, you want to do the right thing? Be compassionate, for crying out loud. And stop making people feel afraid to do the right thing! RANT OVER.]

It's not altogether useful to go into this IF ONLY practice (IF ONLY I had seen the doctor 12 years ago, as a for instance), because you can't move forward while living in the past and thinking about what you coulda-shoulda. That's not productive and can only make you angry or depressed. No point in going there. But if you or a loved one are putting off going to the doctor because of a range of unusual and seemingly unrelated symptoms because you are AFRAID TO BE DIAGNOSED AS A HYPOCHONDRIAC, you would be in good company. 

Nobody thinks random jaw pain will lead to a potential heart attack, but this is, in fact, what happened to a loved one of mine who, thank goodness, went to the doctor anyway and ended up in the hospital with a triple bypass that likely saved his young life. 

Let's face it, you would be grateful for any diagnosis wherein the outcome is LIVING. You can treat, heal from and cure hypochondria. MS? An acute heart attack? Notsomuch.

Here are some links to others' stories who've dealt with the fear of being labeled a hypochondriac. All of their stories resonate with me and point to a greater need for health literacy in our society as well as more self-empowerment and overall compassion. We can't win the fight against any disease if we let fear take the reins or if we don't acknowledge real disease in the first place.

3. "Hypochondriac": The Most Painful Word In Pre-Diagnosed Primary Immune and Other Rare Diseases
4. JUST FOR GRINS: It's really difficult to get an MS diagnosis for some people. Read This Story. My DX only took a few weeks and one team. But apparently my story is unusual; the women in the story at the link seems to have a story more akin to the reality of diagnosing MS. You're going to be appalled, just sayin'.

PS My husband doesn't know this blog exists. In case you were wondering. 

Friday, March 21, 2014

National MS Awareness Month || Begging...pleading... Join me for the local and/or Seattle MS Walk!

Remember the phrase, "Fire, Walk With Me," from Twin Peaks?

Through the darkness of future past,
The magician longs to see
Once chants out between two worlds:
Fire, walk with me.

It has crept back into my memory as I walk this new MS path. Fire, of course, is orange, the color of the MS Awareness campaign. Fire could be thought of as representing a number of things: the inflammation in my brain, the fire that comes from the solar plexus chakra which is all about creation and drive to charge ahead, the literal fire one feels while taking DMTs for their MS. It makes sense that it should be the slogan for my first MS Walk in which I play, not a participant supporter and fundraiser, but an actual MSer.

I've walked twice, previously, for my friend JS in Seattle after her diagnosis. This year I'll walk in my own community with a team that is already composed of some people I already know, so that will be fun. I made myself a family t-shirt this year with this new slogan just because.

But then my excitement about the event was dampened by the fact that my whole family probably can't walk with me.

It turns out that my youngest is in a dance recital that entire weekend and my oldest may not be able to make the local walk (I still plan to do both the local walk and the Seattle walk this year), so it'll just be me and my husband and however many friends I can get to walk along with me. I still haven't found a team in Seattle, but I think Virginia Mason might have one I could join. UPDATE: I've joined the Benaroya Research Institue team, located here.

It's funny, right as I sit and write this I wonder if I'm putting too much energy into it. Part of me is all "nobody is going to come join your walk or wear your t-shirt" and part of me is all "you have to do this even if you walk alone."

But I don't want to walk alone. And I don't want it to only be my husband and my maybe daughter. I love them bunches but, let's just say it out loud: I'm the cheerleader in the family. I know if I walk only with them I will feel like I forced them to do something they don't really want to do (or have time to do).  I might actually feel more alone walking with them. I know, that seems terrible, but I'm a realist. They just aren't into these things.

So... will you? Will you walk with me? With us?

DETAILS

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.

Thursday, March 20, 2014

National Multiple Sclerosis Awareness Month || Three of my MS heroes

I recently posted about celebrities who have MS and who have done some things to get the word out, but I would be oh-so lost without the work of three individuals in particular who have made a huge effort to put good information and support out there for other MSers through their excellent use of media.
Amy Gurowitz || MS SoftServe and MSUnplugged

Amy has lived with MS for more than twenty years and is now bringing that experience, as well as her great sense of humor and sharp mind, to a new nonproft, MS Softserve. MS Softserve is a customizable, interactive online learning environment for people trying to make sense of their MS in a way that's empowering to the user. MS Software received the first grant ever awarded by the National MS Society. It makes sense that Amy should want to build MS Softserve, as she works as a consultant and guest speaker to help healthcare professionals better understand the patient experience and to be a stronger link in the patient-to-doctor communications chain that is health literacy. Amy has worked tirelessly with pharmaceutical companies, physician organizations, nurse educators to find ways to improve the lives of patients with MS. She's also the lively and likeable host of the radio program, MSLOL (Multiple Sclerosis Life of Learning) Radio and companion to the Two MS Chicks Radio program (now known as MS Chick and Ms. Diagnosed).

Deanna Kirkpatrick || MS Chick and Ms. Diagnosed and MSUnplugged

Deanna is a radio deejay by trade and a formal pharmaceutical salesperson, but she is also the amiable other half of the wonderful MS Chick and Ms. Diagnosed radio program with Amy Gurowitz. Deanna also teams up with Stuart Schlossman for the information, cutting edge radio program, MS Views & News. Both programs are part of a larger MS education media effort, MS Unplugged. She is also the chief administrator for the excellent Facebook group, MS Unplugged. Her story is a bit unique: she has lived with and treated her multiple sclerosis for several years until, in 2013, she was "undiagnosed" with MS and given a new diagnosis, Transverse Myelitis, which is a very rare autoimmune condition with many of the same symptoms as MS. Like Amy, Deanna's is a cheerful voice on the air and she works diligently to discuss the day in and day out experiences of living with a chronic, disabling medical condition in a way that helps others to understand their "new normals" and to do so with a measure of positive energy and a sense of humor.

Stuart Schlossman || MS Views & News and MSUnplugged

Stuart's work appeals to the journalist in me! He runs the highly informative radio program, MS Views & News, where he interviews all kinds of doctors and experts about specific issues related to MS, with Deanna Kirkpatrick as his sidekick. Stu's is a major nonprofit multimedia effort, which includes the MSBlog, a major website hub, a weekly newsletter and a YouTube page. Stuart was diagnosed with MS fifteen years ago, his efforts to develop these useful, informative educational media programs came after he was unable to locate the kinds of resources he needed on the internet. He also serves as a patient advocate for the pharmaceutical company, Biogen Idec, which produces several of the major DMTs for MS: Tysabri, Avonex, Rituxan and Tecfidera. Perhaps the greatest favor he does for the MS community is to ask the hard questions and to challenge or expose "snake oil salesmen" as well as those who would spread misinformation and build false hopes in the millions of patients with MS.

Personal note: You can have a bazillion organizations out there like the National Multiple Sclerosis Society and the Multiple Sclerosis of America, and they can jam their websites chock full of information, and they can be really good at this, but their websites are still voiceless and faceless... great for looking up information, but not great for getting the full human experience that these three MS superheroes provide with their tireless voluntary efforts.

We live in a great world when we see people like Amy, Deanna and Stu come forward with their passion, their skill sets and their willingness to put themselves out there in the combat zone for the rest of us to learn from. I have learned more about MS and the experience of having MS from these three than from all the books, magazines and organization websites out there COMBINED. My hat is off to all of them, as well as to the emerging new armies of bloggers, speakers and video artists who are inspired by the efforts of these three to bring real human experience to the conversation. Without these people, I would just feel like a helpless victim, but because of them, I aspire to do more, to be more and to take better care of myself.