Living is an art; time to reinvent myself.

To live; to truly live is an art. To find joy in each and every day, and to do the things I’ve always wanted, require a certain finesse. My whole life I’ve tried to balance pleasing the masses with finding that, undefinable joy, that makes life worth living.

Being diagnosed with MS made me forget how to do that. Suddenly; symptoms and medical tests seemed to be what life was about.  Three years after being diagnosed; this past September, I lost my job.   Realization of what this meant set in as I began to think of other possible jobs I could do.  I realized that I now have physical limitations and I could not be on my feet for eight hours or solve complex problems.

It was time to reinvent myself.  I went to an auction to pass some time and as I found myself bidding on some antiques that were well below what they were worth, and I was excited about that.  I realized I could resell those items for a small profit.  It was fun.  I found a spark of life I hadn’t felt in a while.  I found new friends through my endeavors.  I suddenly had time to get to those projects I put off for so long because I was always working.

MS has taught me a lot.  It continues to teach me more about myself every day.  I may not be physically strong anymore but nothing will ever rob me of the little pleasures in life.  That little feeling of bliss when I’ve discovered something new that I really enjoy.

Posted in chronic disease, chronic pain, Disease, Goal setting, goals, Health, motivation, ms, MS and Working, multiple sclerosis, Negativity, psychological health, RRMS | Tagged , , , , , , , , | 3 Comments

About My Fight With MS

I’ve been asked on occasion to include more information about my own personal fight with MS. I’m reluctant to do that at times because I want to keep my articles filled with useful insight. I realized through my own research efforts that sometimes hearing a personal struggle can be just as helpful.  My path to diagnosis was documented in an earlier post and can be found here: But what about now?  What about since then?

In learning to accept and deal with my diagnosis I began learning everything I could about the disease.  I researched the web, talked to doctors, looked up news articles, read books, and talked to others.  I began this blog as a way to help everyone become better informed; it gave me a purpose.  I also started a twitter feed to relay any current or new science on the subject of MS.  In many ways this allowed me to distance myself from my own diagnosis and concentrate on helping the greater cause.  As most people can relate; the distance does not last forever and as my symptoms began to invade more and more of my life; my blogging slowed; much like my life, and it was time to start looking inward.

So here I am.  Looking inward.  Very publicly.  I’m going to voice my thoughts and fears and share them in hopes that it helps me, as well as someone else who is struggling with what this all means…sometimes knowing someone else is sharing your fears is enough to help cope with it all.

I think fear of the unknown is the greatest chasm in this mountain climb called MS.  I’ve noticed a significant slowing of all that is me.  I used to be so active; mountain biking, hiking etc…now a simple walk down the road is sometimes greater than me.  Will this be my life now?  will I get back to a state of being able to do adventurous things?  Every person is different and there is no answer for that.  So some days I feel like I am staring into this incredibly deep dark hole that threatens to swallow me up.

I’m grateful that I have the life I have.  Am I selfish for wanting more?  I am only 41 years old; I still have many things left to accomplish.  I begin to think about these things when I settle onto the couch after a long day and my legs hurt to the point of tears.  Not being able to stop moving them.  They jerk about without any will on my part.  Sometimes my nights are filled with these spasms and they keep me awake both in pain and worry for the future.   I can no longer wear the beautiful heeled boots I love so much.  They sit in my closet; I keep hoping for a day where I will feel balanced and strong enough to wear them but so far that day has slipped further and further.

I try hard not to bother my family or husband with my worries  or grief; what can they do?  I do not need pity and I do not need advice.  They are supportive and offer what they can when I need it; be it words or kind deed but beyond that; this is my fight.  I try to keep positive and keep kindness in my heart….but there are days the bitterness creeps in.  I can hear it in my words when my frustration peaks or when I am in pain.  I keep apologizing for who I am becoming.  I do not want to be this way but secretly there are times I resent seeing someone accomplish something I wanted so badly to do.  Fatigue has robbed me of who I once was.

No; my tears come late at night when everyone sleeps.  Silent tears.  Silent prayers.  Then in the morning; I try to put on a happy face and pull my tired, aching body into clothes for a full time job I still have to work; yes even here I am reminded of my failings as my cognitive decline has lessened my performance.  I’ve struggled; but I hold on with no other options.  I get angry as I have to hold the handrail and it takes me ever so long to walk the flight of stairs.  I get bitter when I need to use the restroom but wait until the last possible minute because I can’t stand the thought of the pain I will feel in my legs when I do descend the steps.  It’s a very old building and there are no elevators.  Yes sure; I could work in the conference room on the first floor when there are no meetings; yet another reminder of what I struggle so hard to forget each and every day.

I get tired.  I get depressed.  I am fighting each and every step of this disease tooth and nail.  I won’t give in easily.  Yes; I’ve turned the shower water all the way hot until my skin turned beat red in angry defiance…a very silly thing to do as it gives MS the upper hand but anger makes us do silly things sometimes.

There are some good things though.  I’ve met some wonderful people I would not have met otherwise who have taught me a lot about life.  I’ve also had my German Shepherd Nico by my side for the last year of his life.  He is only a year old but learning to become a service dog.  Right now; he keeps me active, gives me a purpose and reason to keep going and keep fighting.  He makes me laugh when all I want to do is cry.  And when I do cry; and he is with me; he invariably always touches me in some small way; or kisses my face and lets me know that he is there for me.  He is the one being that I do not have to put on an act for.  That I can cry, scream, yell and just sit quietly with and he remains steady; never waivers in his strength or love.  Never argues with me; never makes me feel inadequate like this disease does.  He just sees me as I always was; a person.

So here I am; 3rd year into my diagnosis, and finally opening up about it.  Thanks for listening.

Posted in chronic disease, chronic pain, Disease, ms, multiple sclerosis, Pain, physical pain, RRMS | 9 Comments
Posted in multiple sclerosis | 1 Comment

New Years Renewed Commitment

Happy New Year to everyone; may this year bring you many pain-free days and may we all see some great strides in medical research for a cure.

This blog sits with little attention over the past year and for that I am truly sorry.  One of my goals for this coming year is to breathe life back into it and make it a great resource for all of us who struggle with this disease.  With that said; I welcome suggestions and comments from people on topics you would like to see more information on.  I also make a commitment to all of you that I will finish the United States section of specialist referrals and begin on the European section.  If you have a suggestion for another valuable resource please feel free to comment here or send me an email to

I will close by saying that 2012 brought us some new treatments for MS and if you have some experience with these drugs your comments are always welcomed (click on the link for additional information):

Posted in chronic disease, goals, Health, ms, multiple sclerosis, RRMS, Therapy | Tagged , , , , | 3 Comments

Relationships and MS…

At some point, most of us are confronted with having to tell someone; whether it’s a significant other, potential partner, friend or family, about our struggles with multiple sclerosis.  Choosing to disclose the illness; no matter who is listening, is a very personal decision and once the information is shared, we can’t take it back. Responses can vary as much as the symptoms we experience with this disease; so it’s important to consider the decision carefully.

Coming up with a plan of action ahead of time helps us feel less vulnerable and more in control of the situation.

Understanding why we want this person to know we are sick can help in developing the best approach to disclosure.  Reasons to disclose might include; having support, their understanding of symptoms, giving them the opportunity to know something about us that will likely impact the relationship at times.   Knowing what we want them to understand about our disease is also helpful; perhaps it’s the overall impact the disease has on our lives, or maybe it’s just one significant factor that impacts them directly.  Sometimes we are compelled to take more of a caregiver role such as making sure they understand it’s not contagious or fatal; and sometimes we just need to show them we are still strong despite the illness.

Once we’ve decided the why’s and what’s, it’s time to figure out the how’s.  What is the best approach?  There really is no one, right way to explain to somebody who cares about us that we have a chronic illness.  It’s important to remember that we are dealing them the same blow that we received.  They are going to have feelings; they are going to react.  Some of those reactions may be sudden concern or empathy.  not everyone reacts to news such as this the same way.  Some people will be at a loss for words or want to quickly change the subject; don’t mistake this for not caring.  They may not feel comfortable processing the information at that moment or they may not know how to react.  Some people have a gift for saying all the wrong things; don’t judge them, give them time.  It seems that some people have a knee jerk reaction to help and it goes terribly wrong; again, it doesn’t mean they don’t care, and by allowing ourselves to negatively respond to something said will only undo everything we are trying to accomplish through disclosure.

So how do we present the topic?  It’s often good to have a low-key, face to face conversation.  It should take place at a time and in a place where distractions are at a minimum but it isn’t necessary to make it the sole focus of the visit.  In fact it’s probably better to make it one topic of conversation among other topics so that there is far less pressure on either person before or after the topic is discussed.  It is often nice to have another direction to take the conversation off-topic after all questions are resolved.  Remember; its always better to end a conversation with someone on a positive note.

Being prepared to answer questions is really important.  It really isn’t fair or healthy to tell someone something that will impact both lives and then refuse to talk further about it.  Be prepared to explain what Multiple Sclerosis is, what the long term prognosis could mean, and remember to tell them that there is still a lot of research and testing being done with a lot of advancement and possibilities.

One thing to consider is that we should choose a time to disclose when we are feeling more in control of ourselves.  How we are feeling will come through in our explanation and will affect the person we are talking with.  This is not to say that we always have to be upbeat and happy; that’s not realistic, but rather that we give the person on the other end an opportunity to process all of this without the added burden of having to comfort us at the same time they are first hearing this news.

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, psychological health, RRMS | Tagged , , , , , , , | Leave a comment

Traveling with Multiple Sclerosis

Long lines, delays, mysteriously missing reservations, and lost luggage are just a few of the annoyances that come with traveling.  These annoyances are dreadful for everyone, but if you are a traveler with special needs, they sometimes become serious issues.  Combine that with all of the considerations that must go with planning a trip when you have special needs and a trip seems daunting.  Fortunately; Ingenuity and some careful planning help keep the enjoyment in the trip.

Planning a Trip

First consider how long you plan to be gone, where you plan to go and how you plan to get there. (Note; if this is a vacation, sometimes traveling in the off season is much more enjoyable.  This gives the luxury of less crowds and more available resources as well as cooler temperatures and less heat related fatigue).

  • Travel agents or tour companies are excellent resources for setting up a trip with all of the necessary accommodations.  Remember to give them all of the necessary information such as your mobility requirements and any equipment you may travel with.  We used a tour company when traveling to Italy and the convenience of it all was worth every penny.  They quoted us a price; and for that price, they arranged and purchased our tickets for: our flight there and home, our boat, train and bus tickets in various cities, our hotel accommodations and local tour guides for each city.  All we had to do was show up, purchase our meals and whatever we wanted to do and the rest was all taken care of complete with a travel itinerary that told us where to be and when.
  • Check on your hotel.  You can research most facilities online; however, don’t be shy about calling and asking for necessary accommodations.  Having a room on the first floor really makes life with a suitcase easier.  Its also important to note stair/ramp access, pool access, restrooms etc.  It also helps to find out if the hotel has shower chairs available or any other special accommodations you may need.

What to Bring

  • The most important item to have when traveling with all the necessary gear and medication is a doctors prescription and note of explanation. (for medications, and cooling vests).
  • Medications should almost always accompany you on board in a small cooler with an icepack(if your medication requires).    This allows you to still have your medications in the event that you and your luggage are separated.  Also; keep in mind you can purchase or obtain free from some drug companies, a needle clipper.  This clipper will cut off and store the needle in a small handheld device as opposed to lugging your sharps container everywhere.  This renders the remainder of the syringe safe to dispose of in the trash.
  • Use a wheeled, carry-on sized suitcase.  As a veteran traveler I highly recommend using a small carry-on suitcase for all of your travel needs if you can get away with it.  You can always find a place to do a load of laundry if you plan to be away for a while but this configuration helps avoid lost luggage, lessens fatigue from carrying your bag everywhere and waiting in baggage claim after your flight.
  • Keep in mind the topography of where you plan to be.  If where your visiting has loads of cobblestone streets, a rolling walker may not be the best aid.  Take what works best for where your going.  A cane may mean moving about slower but it may free up your options for where you go.  If a cane doesn’t work for your condition perhaps forearm crutches are a possibility.  Talking with your doctor may reveal many alternatives you hadn’t considered.  Just remember; a great trip can turn loathesome if your fighting your way around everywhere you go.
  • Remember many facilities offer free wheelchairs to use while you are there.  Places such as airports, museums, and others can turn what would be a fatiguing visit into a more enjoyable vacation.  don’t let pride keep you from having a great trip.

General Advice

  • Take advantage of early boarding for people needing assistance at the airport
  • Try to arrange an isle seat near the front of the plane.  (Anything to lessen walks and waits will help with fatigue, and close proximity to the washroom helps with those sudden need to go moments).
  • Always keep medications in their original labeled containers.
  • Keep hydrated and make sure you rest when you start to feel fatigued.  Nothing can ruin a vacation faster than feeling sub-par while wrestling with long lines and navigating difficult terrain.  Sometimes just taking a 30 minute break at a local cafe can reset you for the rest of the day.
  • Know where the hospitals are in the cities you plan to visit
  • utilize baggage porters or valets when you need to.

Enjoy your trip!

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, Planning, RRMS, Traveling with MS | Tagged , , , | Leave a comment

Gluten Free Diet…And Other MS Cures.

Gluten is a protein found in some grains such as wheat, barley, and rye. There is some controversy pertaining to whether oats should also be added to this group because of possible cross-contamination occurring at some milling facilities. Gluten is also a food additive that is found in many foods; for example, ice cream and ketchup.

Why would we want to eliminate Gluten from our diets?  Answers vary.  There is thought to be a connection between food sensitivities (not necessarily allergy); more specifically, the way our bodies react to this type of sensitivity, and MS symptoms.

When we have an adverse reaction to a food; it is often the protein in that food that is the culprit (gluten for instance).  Our immune system responds to this as if it is a harmful invader.  The immune system then triggers a reaction.  Reactions can vary from person to person.

While I am skeptical at best of any type of diet “curing” MS, (at present; an incurable disease), I do believe that better nutrition can afford those of us suffering with MS a better quality of life through moderate control of some of our symptoms.

There are some issues with a gluten free diet.  It is possible to become deficient in other nutrients (fiber, thiamine, riboflavin, niacin, folate, iron, or calcium for example).  It is important to look at the big picture when exploring radical changes in our diet.  Balance is extremely important for the human body.

One thing I always try to stress is to remember we are not trying to cure our disease.  We are looking for ways to make our quality of life better.  Leave the cures to the medical professionals.  If a change in our diet improves our symptoms, we’ve found supporting therapy.  We should always remember to discuss these with our doctor because some diet changes or herbal therapies can directly interact or interfere with certain medications.

I suggest; if planning to try a diet or herbal remedy, to always log findings in a notebook.  This log should contain every detail:

  • What changes were made (diet, introduction of an herbal remedy)
  • Amount of change or what the change was (diet changes noted/dosage of herbal remedy)
  • note the date and the time of day
  • effects of change

Keeping track of our efforts will help us find what works best for us and what doesn’t.  It will also help track down any causes, if we have adverse reactions.

Posted in alternative therapy, chronic disease, Diet, Disease, Health, ms, multiple sclerosis, RRMS, Therapy | Tagged , , , , , | 7 Comments

Peer Support for MS Sufferers.

Connecting with another person who knows first hand what we are going through is essential when confronted with a life changing diagnosis such as MS.  Peer support groups or peer telephone support are great ways to meet new people that share similar experiences.

Peer support offers us a way to learn more about the disease, share experiences or personal feelings on the issues faced, talk through problems or choices, and discuss what works and what doesn’t.  Topics can very from the disease itself to coping mechanisms for dealing with common day to day issues.

There are several avenues we can use to find those connections.  In the United States and Canada; the National MS Society has; MSFriends for peer telephone support.  Click on the links to find their web pages.  They also have a Peer Support and Mentor Program.  The Multiple Sclerosis foundation offers an interactive map on their website to find local (across the US) support groups.  For readers not located in the US; I am working to put together a page that will offer a listing of contact information for support groups world wide.  I will send out a notice when it is available; please make sure you are subscribed to receive updates.  You can also find me on twitter: (kitsune1971) for updates.  If you know of any resources that you would like to add, please contact me with the information:

No one needs to suffer alone in silence. 

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, psychological health, RRMS | Tagged , , , , , , , | Leave a comment

Receiving a Diagnosis of Multiple Sclerosis

The initial diagnosis of Multiple Sclerosis (also known as MS) is scary.  We feel a wide range of emotions of everything from shock to relief.  Typically by the time diagnosis is reached, we’ve been through a battery of tests and already suspected the possibility but somehow having the official word still comes as a bit of a shock.

Denial, sadness, anger, fear, confusion, avoidance, sleeplessness, crying and withdraw can all be normal reactions.  Relief is also a common reaction after wondering for so long what could be wrong and finally having those answers.

After the initial shock wears off, acceptance is our goal.  Multiple Sclerosis is a progressive disease that does not yet have a cure.  Acceptance is the key to being able to get on with life.  Acceptance has different meaning to different people; however, the goal here is to accept that our life is going to change.  We may not be able to do all of the things we used to do and we may sometimes need help.  If we fight this; it will be very difficult, if not impossible to find happiness because we will be forever fighting ourselves.

Once we’ve accepted we have MS; then it’s time to take back some control.  This disease robs us of who we once were.  There are many ways we lose control with this disease; but it doesn’t have to stay that way.  There are ways to regain some of that control.  Aside from various medications that help to alleviate symptoms; there are also other ways to be in control.  Taking control of our healthcare is a wonderful feeling of empowerment.  Knowing our disease.  Learning everything we can about it.  Keeping our own health file (see:  Learning ways to manage our symptoms.  Talking with our doctors and creating our own health care team that will work with us.  A bit of planning or modification goes a long way to helping us accomplish some of the things we used to do; and those accomplishments become a lot sweeter than they were before.

A very important part of coping with Multiple Sclerosis is talking with others who are experiencing the same things we are.  Thanks to modern technology there are message boards available if we wish to test the waters without jumping in.  Once we feel comfortable talking about our diagnosis, we can consider joining a support group.  It is a great way to get out and be around people who understand what we are going through.

When the time comes that our body changes, our abilities change; remember we need to look at ourselves for who we are; and not hide from our reflection.  See the beauty within and within all accomplishments.  Be assertive, no one should make you feel inferior.  Speak up if someone says something frustrating.  We are still the same people we always were; possibly even stronger.

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, psychological health, RRMS | Tagged , , , , , , | 6 Comments

MS flare? When to call the doctor…

For many people suffering with MS, knowing when to call the doctor is a difficult decision.  Questions abound as to the significance of symptoms and what exactly is an exacerbation compared to the new “normal” for the patient.

An exacerbation (also called; a flare, attack or relapse), is a sudden worsening of a symptom or symptoms after a period of stability.  Also included are new symptoms that suddenly appear or a symptom that grows worse lasting at least 24 hours.  Remember; not all symptoms are always related to Multiple Sclerosis.  Sometimes there is another underlying condition that is responsible.

Calling the doctor is always a good idea if you are unsure or uncomfortable about any aspects of what you are feeling.  During this visit; it is a good time to review with the doctor what you can expect from the disease and from your treatment.  This will help you to establish a baseline for your normal and what is considered an exacerbation.

During your visit with the doctor its important to ask questions and be an active part of your healthcare.  Listen to what the doctor tells you and make notations of important points you want to remember.  Make sure you communicate with your doctor if you do not think you can follow through with any of the recommended treatments.

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, Pain, physical pain, RRMS | Tagged , , , , , , , | 1 Comment