My Passion...

I truly believe that if one pursues one's passion in life, things come together in a way that is simple, mindful and beautiful. Does that sound like a cliche? Think on it. If you truly believe in something, you are at your most natural and most efficient. Ideas come and make sense and maybe even make an impact. In life that is what everyone tries to make happen -- some do, others don't want to and many others try.

Lately I am getting the feeling of life going by me and that I am not keeping up. Now it is Christmas and I spent the morning in my robe! Tomorrow is another day but I want to change it from being just "another" tomorrow. I have a list of things I would like to complete -- just in time for New Year's resolutions! I have been working on a book FOREVER. It is mostly written, well about 100 pages and I just need to complete the rest. This is the interesting part but I seem to be stuck just living life. When you have MS, just living life is a full time occupation!

My book will have a different tone than everything else I've seen on MS. I just finished reading a New York Times review of the book Brain on Fire. I am carefully trying to understand what the reviewer thought of the book. Ultimately I realized that it is all about your story. But there is that part about not getting too caught up in misery, sorrow or even narcissism. So one has to carefully construct the story without making the audience slog through all your baggage. Difficult to say the least. So ultimately I have to tell my story honestly and be mindful about my MS and non MS audience.

You know what the hardest part of pursuing my passion for writing this book is? Just getting started where I left off. After about a week I've nailed it down pretty well. It is not that I am lazy or unchallenged, it is that I need to pull out the same discipline that I've used at other times in my life and just WRITE! It helps to have that goal in my mind too. A finished book with my story for so many to see and so many to possibly help understand this insidious debacle called MS.

My book consists of three parts: I. Life before MS (yes there was a life before), II. life during diagnosis and III. life after MS (yes, there is such a thing). I am stuck on part III. And this is the most marvelous part! I might be a little hesitant to write about this part because maybe I never thought it would ever come. I tell my audience how I got here through long labyrinths and tunnels. Anyone can do this, all it takes is a bit of direction or in my case just knowing what to do. People, especially young people might want to know how to live a relatively normal life because I didn't have anyone to tell me it was possible. In the process I lived through damage caused by the condition simply because I didn't know any better. In other words, how to live more healthfully, looking into research that was never reported to us instead of looking for the answer in a pill. Well, I better get to the book, time is wasting.

But as they say, better late than never!

Mindfulness meditation & my MS

I write my blog posts because it is how I can gauge my current mental and physical state. I have lived with MS for a very long time -- 27 years -- this December 25th. I can honestly tell you that life has taken me through turns, some instructive and others destructive. I am also trying to write a book about my life with MS. My book will consist of three main parts, life before MS, years after diagnosis and life after MS. Yes, there is life after MS. I believe now that my whole journey took place as I searched and searched for answers to find none. Having emerged from this long tunnel, I now am living life to my fullest. The book will talk about all the mistakes and ultimate advocacy and happiness in finding my own voice to handle some very difficult times. I have re-discovered life and am not moaning about what has been lost.

When I question my purpose for being here and what it has all meant up until now, it is to share with you my lessons. Knowing that one's MS is not like another person's MS, I speak of my own experience in hopes that everyone will have something to gain -- even people without MS!

I have come across something very interesting within the last month. Having heard over the years how only meditation will calm my mind and anxiety related to my life, I have made a wonderful discovery -- "mindfulness meditation." This is different from what you might think of as meditation. Honestly, I am not one to sit in a corner, focus on a mantra and let all thoughts leave me! That is what we all think of, right? Almost like a waste of time that I might spend doing something useful. Mindfulness meditation is not that at all.

Let me explain how it works for me.

The idea is not to ruminate. It is possible to shut out all thoughts about the past and the future by focusing on the present only. How to do this? Look at your environment, all the things around you....each one of those items can take up observation time. A cup, a pen, a plant anything...just stay present, with whoever else is around you as well. An example, friends had come over for lunch the other day. Normally, my attention is everywhere but around the table we were sitting around. I would start thinking about something that happened two days ago, something irrelevant to my company who came to be with me. I tried the exercise that I had been reading about but had not tried yet. It is almost as though I trained my brain to just be at the table. I focused on everyone there, asked pertinent questions, discussed issues that came up and was a far far nicer person! My company was very familiar with the "old" me being distracted all the time and I finally mentioned being mindful. Then the reactions came and I saw that they noticed the difference.

This article illustrates how one can really feel the benefits of this:

 http://www.sciencedaily.com/releases/2011/01/110121144007.htm

More than anything, the stress in my life is reduced mainly because I don't waste time and energy thinking about things that don't really matter. Most of it is imagined anyway. So, every minute I stay in the present is valuable energy saved!

Sometimes it can be hard to focus only on the present. There are a few tricks to stop your mind from whirling around -- for example focusing on the breath or counting to ten without other distracting thoughts intruding. Personally it is hard for me to focus on the breath but I do the counting -- starting over if thoughts come in. Most important is to not judge yourself or the situation. If thoughts come in, they come in. Let them, just know they did.

This has really worked for me. I also don't get upset about things that haven't happened yet. You may be surprised at how keen your attention really is and how you think and say things that never had a chance to come out with all the unnecessary thoughts coming in.

It is as though my brain needed something to tell it what to do. Isn't that the case with most things in life?

Talk About the Process

MS and anxiety is something that has interested me for a long time. When we talk of anxiety, we think of all the mood disturbances, psychiatric issues and such. As always different people have different things that they consider as being anxiety. Medical professionals tend to lump a lot of people into the "generalized anxiety disorder" category, or GAD. Along with this comes a host of medications to treat this, anti-depressants and selective serotonin reuptake inhibitors (SSRI). I have taken SSRI's for what we thought was a form of depression, anxiety or something like that. Sometimes I don't think even the professionals know what is always going on. I have explored this topic extensively and keep finding that the popular rhetoric seems to be that MS is a baffling condition that often  progresses so no wonder people get depressed and anxious. But we all express this sentiment in so many different ways. Let me talk about me for a moment.

I was diagnosed at age 20, in college. I was an active 20 year old, very athletic and out to find my place in this world. Then you tell me I have something I cannot even pronounce. I continued on, little broke my stride until many years later when not only my stride but my spirit was broken.

I picked up the pieces and continued on but things were not as they should have been. So I started to get anxious. But all this time, my brain was being "zapped" in certain areas that was in fact affecting my emotions. Now I think back to how I single handedly tried to bear this brunt. Almost 27 years later, I am finally devising a plan to handle the way my runaway emotions are expressed. Because of my anxiety and where the brain lesions are, I have a case of uncontrollable laughing and sometimes crying. Something inside me starts and cannot stop. This can happen at any time, anywhere with anyone. The worst part is, I am not doing this, it is almost being done to me.

We were at some friends at Thanksgiving. Someone said something that began that ripple inside me. Then I said something that in all honesty was not that funny but the uncontrollable laughing began. Something in me decided that I had enough of this behavior that surfaces only to embarrass me. So I stood up and said needed to use the bathroom and everyone assumed that is why I was laughing! I took a break in order to stop the cycle that had been started. It worked. I came back out and had no more feeling to laugh. We all started talking normally again.

The other morning we were having breakfast with friends and I practiced my mindful meditation and paid very close attention to what people were saying. By doing this, I got involved in conversation, very involved so my mind did not wander to places other than the table. If I would have felt vulnerable in any way, I would have voiced that I was getting a little anxious or just taken a walk to the bathroom or anything to break the pattern.

I have found by suppressing feelings, they come out with greater force. By either breaking the pattern or talking about the process or what was happening was an honest way of dealing with it. I don't seem to be able to get rid of this so these techniques are the next best thing.

Gastroesophageal Reflux Disease (GERD)

The prayers to my ongoing respiratory condition have finally come to light. GERD is the term for acid reflux also known as heartburn. People have different symptoms within this diagnosis. Some people will pop a Tums or do some antacid and can move along, others may have accompanying asthma that can worsen GERD or the other way around. How did I make this connection? Actually, this connection was made by a doctor years ago but we just started treating the asthma symptoms. When someone is diagnosed with asthma at a later age, in my case in my forties, GERD is often looked at as an accompanying factor.

Always at night the symptoms start. That is another telltale sign. When I lie down to sleep, everything becomes worse. I start going into bronchiospasms, have trouble breathing and will start making gurgling sounds and a very loose cough. Let me explain what GERD is, how it is treated and some of the symptoms.

Reflux is what it sounds like. The stomach acid is constantly "splashing" the lower part of the intestine. In this condition acid in the stomach rises up into the esophagus. This happens because the valve separating the contents of the stomach from the esophagus  doesn't close properly--the lower esophageal sphincter (LES) - a muscle between the esophagus and stomach - relaxes, allowing the acidic contents of the stomach to splash back (reflux). Certain foods are implicated, such as fats, tomatoes etc. This is a confusing situation for me because my diet is pretty low fat, no junk food including soda (rarely). I do love tomatoes and look forward to when they come out in the summer. When this acid causes problems with the breathing tubes, I feel asthmatic symptoms. I do question whether or not I have asthma but can safely assume all this is interrelated.

Gastroesophageal Reflux Disease (ncbi.nlm.nih.gov)

There are all kinds of over the counter remedies for GERD. Actually, the pharmaceuticals make a mint on some othem particularly since one is pushed into doing anything to feel better. Of course there is Tums, Prilosec, Nexium etc. and more prescription based drugs like Protonix.

So, what finally clued me in? I couldn't tolerate toothpaste! Searching led to answers and many others who couldn't tolerate toothpaste either. I finally put two and two together and realized that since I am alright in the daytime, I will make a few lifestyle changes. I switched to baking soda as my new toothpaste and introduced some fermented foods into my diet during the day, such as sauerkraut, pickled cabbage, pickled tomatoes etc.

The biggest discovery came last night. I kept reading about the "banana myth" which is introducing a banana after the evening meal. I thought "sure"!!! a banana?? Guess what? It worked like a charm. I had a little bit of wheezing but no breathing problems. So, I didn't have to use an asthma inhaler to sleep which by the way has been pushing up my blood pressure.  They say pineapples also help. I think they will be on my next shopping list. But the banana had me stumped particularly since it could deal with all the acid (tomato sauce and wine at dinner) and let me sleep.

No medication -- a banana a day, which is how I want to keep it

Internal motivation and loss

Sandy came and went. Unfortunately there are other places like NYC, NJ and also CT that are still dealing with the aftermath. The skies are gray here and it will rain for the next couple of days. Some people have been so uprooted, lost homes and loved ones that dealing with a gray day is not that hard, as long as it is calm.

There is always another person on this earth who is experiencing terrible things, like the victims after Sandy and other natural disasters or starvation in Africa and here, wars and fighting around the world and so on. In my own life, I try and "maintain" myself as best as I can given my own circumstances. After all, that is all I can do.

Things that help me to stay balanced involve staying in control of things as best as I can. You know, I amaze myself. I can stay in my house for days and not get bored. My mind is always learning things and sometimes too much. For example I just took a walk to the mailbox and had an interesting thought. My WalkAide is programed to lift my left foot every time I go to take a step. So, I thought I would pretend by telling my brain to "lift" every time I took a step, just like I was doing it naturally. The brain knows you are doing this but maybe, just maybe it might learn to redo this activity that it once did. So now every time I walk, I tell my brain to lift my foot as if I was doing this and not the WalkAide. Hmm...my point is that I am internally motivated to do so many things. I don't have to go somewhere else to get stimulated to live my life. Is there something wrong with me? I don't think so. I must be motivated differently than some others.

I am just grateful for what I have in life even though I have lost a lot. So, people can experience loss in many different ways. The way we handle this loss is also different. NPR just had a piece on about stroke patients and constraint induced movement or CIM. Talk about being internally motivated. People who have had a stroke go through long rehab sessions with therapists who will constrain the able limb and ask patients to try and move the challenged limb. Talk about feeling helpless. I know what that internal dialogue feels like. No matter how much I try, the damaged highway is not allowing signals to go to the limb, in this case my foot, to tell it to lift. You can tell it until you are fed up, think of stroke survivors. Their loss is great, just like mine but there is no CIM in MS. I wonder why? It is so similar. Sometimes I feel like my body on the left side is weak and heavy, not like the other side.

Is all loss the same? Of course not but there are elements that are similar. Now MS and stroke, these are self-losses, or for example  my young friend Kate who is blind. All loss has some sort of tragedy attached to it. Whether Sandy or death of a loved one or one's own health.

Loss is loss but internal motivation -- when the going gets tough may be my magic bullet.

The kindness of Strangers

I think humans are inherently kind. Of course one hears about high profiled criminals, animal abusers, sexual deviants etc. but if one gets lost in that thinking, the whole world seems bad. Women are not the only sex to get raped anymore but as woman we do have to keep our third sense active. But I did not mean to get into this subject really, I want to focus on the kind human part.

In my day, I have encountered so many attitudes and people with these attitudes. I have a disability and there are times when I need help. It could be as simple as moving a chair out of my way so I can walk without falling or  carrying something across a room or helping me carry my groceries to my car, particularly if the store is small but this happens even in a big supermarket. These are not big things, just things that I cannot do myself because of my mobility issue and MS. I write about this because more people have helped me along at times than I can count, only because they are kind. You know, sometimes it's not even helping me physically, it can be a nice smile or even a joke.

I used to dread going to the store or anywhere for that matter. As my disability progressed and reached a point when I needed help, it was terrifying not knowing how others would react. It is interesting how this unfolded for me. Over the years I went from being scared to learning what it means to meet kind strangers. I was in an awkward stage towards year 14 with MS when I did not need a walking aid but I wished I had one. So, people would look at me and visibly I looked fine, just wobly. The assumption may have been that I had been drinking but of course I had not. So, at that point I started mentally "mapping" my steps and using caution in situations where it was always second nature. Then, everything was different -- this took many years to happen and to get used to.

So, now I walk as though the left side of my body has been affected. I was no longer walking the delicate line of partial disability, no, I was disabled. That meant not only did I have to learn how to walk differently but learn to somehow walk. I am happy to announce that has happened!

My favorite story is about a man in his 90's. We walked into the supermarket at the same time and at the same speed. We slowly approached the sliding doors when he stopped, banged his cane on the ground and said, "here, let me open the door for you!" As the doors opened automatically, I smiled at him and said, "wow you must be a magician!" This encounter may not mean much to someone else but it made my day! Or the numerous times that people have helped me bring groceries to the car or unload things or even bring a scooter back to the store when I couldn't find handicapped parking anywhere because that would mean I would have to walk back to my car. The man who helped was behind me in the grocery line. The other day I asked volunteers, who were sitting at a help desk in my local medical center if I could use a courtesy scooter. An older man jumped up, showed me how it worked (all scooters are different), wished me well and told me not to worry and how he was happy to help. He was definitely happy to do his job helping people like me. None of these people had to help me. They did because they wanted to help. The older lady there smiled and said "we're here to help."

Is that what they mean by "paying it forward?"

Magical morning!

I am never awake before 7:30 or so. Today was the most amazing morning I've had in a long time. Since I have asthma and am frequently woken out of a deep slumber during which time I usually try to figure out how to somehow get back to sleep, I never see the dawn! But this morning was an exception.

I went through the usual coughing and restlessness which frustrates me and of course David. But today, I must have gotten enough sleep during the night that I threw off my covers around 5:30 and announced that I was getting out of bed. Such uncharacteristic behavior! David must have thought he was still dreaming. I stumbled my way into my study, checked my email, put on my brace, changed my clothes and headed downstairs. I made coffee and while it brewed, I grabbed my cane, hat and a jacket and YES, went outside. It was barely light outside and the birds were not their usual noisy. They must have been shocked to see me! We have a new driveway, all even without dips and potholes so I knew I was safe.

What made me do this you ask? Not sure except to say that I must be feeling well to embark on this adventure. I went up the new driveway and then carefully on to the road. Our early neighbors hadn't left for work yet and I knew as the light came up, I was safe on the road.

Cracks in the road

While I walked, not far but enough to get my heart pumping, I of course thought of all the ways to improve my walking. But then I focused myself on walking safely, which is why I wore my brace and not the WalkAide. The actual road can be tricky in spots and I would just save the WalkAide to exercise my leg on the driveway. It would be so nice to just walk without thinking but anyone in my position or long term MS can understand what I mean. Foot drop is essentially a paralyzed foot waiting for "brain orders" to lift the foot -- which does not happen, so however one puts that foot on that uneven surface, it better be secure enough to not sprain or "roll". And this whole road goes uphill. Yikes! Well I got over that impediment and proceeded up the road to the first set of trees on the left. In spite of all the safety issues, I enjoyed the quiet time. And I actually relaxed -- I mean really calmed down. That itself was worth the adventure. For someone with mobility issues, this is a nightmare but I am here to tell you that should never stop you from getting a good walk in. Be careful and watch your steps but do try, you will be glad you did.

More cracks....

Yesterday I went to my doctor and she asked if I exercise -- never an easy question to answer! Yes, but not the way you do is what I should have said but I told her I do housework, laundry etc. and of course climb stairs at least 10-15 times a day. Would you consider that exercise? Considering the effort involved when you are trying to "maintain" yourself and the task at hand, of course! I don't go to the gym or ride a stationary bike, I don't have to. My day is productive, especially today since I walked in the wee hours when others were not quite out and about, it gave me such a sense of accomplishment. These are my accomplishments, no one else's.

But one thing, if you decide to make your own exercise schedule, make sure you rest in between. If for no other reason, it will give you more energy to do more! Plus not bring you to the point of total fatigue, which is not what this is about, it is about vigor, pride, endurance, strength and of course, accomplishment. And when no one else is stirring it is only you and it is magical.