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Don’t Be Afraid

September 23, 2009

When I was a little girl, the only chef on TV was Julia Child.  I think she influenced me much more than I previously realized.   I have always cooked totally without fear. I am the only person I know who will prepare something I’ve never made before when I’m having guests for dinner.  In fact, that’s my favorite thing to do.  I recently saw the new movie, “Julie & Julia,” and when it showed the famous Julia Child TV moment when she trills in that voice that Meryl Streep did so perfectly, “Don’t be afraid!” I suddenly remembered seeing that show all those years ago when Julia said that.  I had long since forgotten it, and in that moment the memory brought back the way Julia made me feel when I heard her say that…I felt a bravado, like I could do anything and there was no reason to be afraid, not of food, not of anything. 

Here it is, umpteen years later and that feeling is just part of me now.  I certainly cook that way, but until that revelation in the movie theatre, I hadn’t noticed that I really approach everything that way.  I’m not a big risk-taker or anything; Mom overruled Julia’s influence in that regard…but “Don’t Be Afraid” is my general attitude toward things I want to do, and things I have to do, too.  It’s certainly the way I have always tackled emergencies and crises and it is the way I deal with MS.  

But let’s be honest here, fear and denial are hard to resist when facing disease and the radical life changes that can come with it.   I don’t want to lecture here, but I do want to share my story with regard to fear and denial, with the hope that it may help others avoid some of the pitfalls.

First, understand that MS is not considered a fatal disease and most people who have it live a normal life span.  The unpredictability of the course of the disease is certainly scary and particularly so because no two cases are alike. No one can ever really be sure how his or her case will progress.  But according to all sources I have read, by far the majority of cases are manageable and with appropriate adaptation, life will be good and long for most MS patients. 

On a personal level though, it’s not always as easy as it sounds.  The fact is that for me there was, and probably for most people with MS or any other serious diagnosis, a period of mourning to go through. The usual stages of mourning a death – denial, anger, bargaining, depression, and acceptance – are not so different from the mourning of the loss of the life you expected to have.  The medical community might expect us to have a long life, but that doesn’t mean that we (or even most of us) will be able to live and work the way we would have without MS. It is hard to accept this sudden change in our lives, and fear and denial are very common upon receiving the surprise of an MS diagnosis.

For me, when I had my first episode and long before I was ultimately diagnosed, I had already pretty much figured out that I had MS so it didn’t come as a big surprise.   I didn’t have time to stop and be scared and I didn’t have time to waste on denial; I had two small children and I had to figure out what to do on a practical level right away.   Back then, an MS diagnosis was made after doctors watched your symptoms for a year to distinguish them from other diseases.  Not really so very scientific, this diagnosis by elimination, and it would certainly be easy to think that a doctor could misdiagnose on that basis.  That wait was frustrating for me, and at times I wondered whether it was MS or something else, but there really wasn’t time to dwell on that.  Now the diagnostic tools are better, and MRIs are particularly useful in diagnosing MS.  MRI technology was very new back in the early ‘80s when I had my first MRI because of chronic headaches.  I remember at the time that the radiologist and neurologist noted that there were spots on my brain but actually admitted that they didn’t know what they were or what they meant. My doctor now, looking back at those first early MRIs has no doubt about what those spots were then …they and we know so much more now and diagnosis based on MRIs is pretty reliable.  I’m glad they didn’t know what the spots were on that first MRI because I didn’t have my first episode for some years after that and knowing that MS was coming would have changed things needlessly, and not for the better.  I might have chosen not to have another child and that’s something I hate to even think might have happened.    

For many people, and I would venture to say most people, there is that period of time when you want to deny that you could have MS.  You’ll deny it for as long as possible, until all testing has been done and the doctor has made the definitive diagnosis and even then, many of us try to believe that there’s been a mistake or that something else will be revealed to change the doctor’s mind.  For me, a hint of denial came much later when I had been in remission for so long that some doctors started wondering if that diagnosis had been correct.  It was their questioning that led me to wonder and to hope that maybe it was something else.  Then, a few years ago when it shifted into Secondary Progressive MS, there were no more questions.  Denial is natural in situations where diagnosis is bad, unexpected, scary and filled with the unknown.  I don’t for a minute believe that a person shouldn’t experience it, I think it’s to be expected and to some degree it is the denial reaction that drives a patient to find out all he or she can, to seek multiple opinions and to look for all options possible in his or her situation.  That is a very good thing as long as it doesn’t drive you to hide your head in the sand and refuse to think about it at all.  I haven’t seen that happen very often with MS though, where something very obvious is happening to your body. 

Fear, though, is another thing entirely…there is a big difference between a bit of denial and the all-out fear reaction.

Having been in both places, I can tell you what I’ve learned.    Fear might be as natural as denial, but fear does a different thing to a person.  It drives people to do irrational things, to be tempted to make choices that in a more stable state of mind, they would never make.  It makes people desperate.  Often, desperation takes the form of trying crazy, dangerous or unproven measures to treat or cure disease. The presence of unbridled fear can allow a patient to accept a treatment prescription that in fact may not be best for him or her for a variety of reasons.   Other times it hinders the creation of a healthy partnership relationship with doctors who are there to help, causing a patient to rely on doctors or even family members to make all the healthcare decisions for him or her without giving input as to personal observations or informed concerns.  Fear tends to inhibit lively dialogue with healthcare professionals that would enable doctors to understand better what would be appropriate for you.  When you manage to keep a level head about it all, searching out information and thinking clearly, then you can make better, more intelligent decisions.  Of course, this requires availing yourself of resources both from medical sources, drug companies, and from other patients with similar disease having experience with what you are considering.  It’s a daunting job to take on this responsibility and not to just rely on someone else to make decisions for you…but it does wonders for dispelling fear and feelings of helplessness when you become part of the process and part of your treatment.  I don’t mean to say that you shouldn’t find a doctor in whom you can trust and with whom you can talk freely…it is essential to find such a doctor…but it is in your best interest to be a partner in decisions about your care, to ask questions, to bring up ideas for discussion about which you have read or heard, to weigh in your own mind all factors pro and con that are known about any particular treatment, and to think about everything very thoroughly before you make decisions with your doctor.   Your quality of life and the appropriate management of your disease depend on it and you can’t afford to let denial, much less fear, cloud your mind or impede your judgment. 

For 20 years I have worked hard never to let my fear of the unknown lead me to accept treatments for MS that to me, seemed to risk causing more harm to the health of my whole body than it promised to improve the MS.  I never want to take something that has side effects worse than the MS symptoms I already have, nor do I want to risk damage to organs or functions in my body that are perfectly healthy now. I never want to be so afraid that I will try anything without regard for the consequences that might follow.  Only you know how you feel and what you are willing to tolerate and to risk. I urge you to inform yourself, talk with your doctor, your spouse and family, read and do research, then confidently make decisions that are right for you. By doing that, you will gain the strength to forge forward with your life, disease and all.

And when in doubt, remember what Julia Child said, “Don’t be Afraid.”

 

Note:  As I prepared to post this newest blog, I came upon this article posted in “The Health Care Blog” called “Patient, Heal Thyself” by Don Kemper.   In it he states, and I paraphrase here,  that if we want better health care, we should be prepared to be smarter patients.   I couldn’t have said it better myself and I encourage my readers to read his blog along with mine.  I have linked it below.

http://http://www.thehealthcareblog.com/the_health_care_blog/2009/07/patient-heal-thyself-if-you-want-a-better-system-support-a-smarter-patient.html

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Fightin’ Mad

September 13, 2009

Sometimes I think about what I’ve already done, the parts of my life that are finished and behind me. I completed my education when I was 22yrs old like most people I guess.  I’ve had my children, which was probably the biggest thing I ever did.  I’ve been married and divorced. I recreated a life for myself as a single woman in my 40s. I built a photography business first in portraiture, then changed course and took on architectural photography, all the while doing fine art photography, too. I raised my kids, got  involved in their schools and our community. Then I helped them get into college and sent them off.  And now all of that is over and done.  So what do I do now?  I’m a full-time patient in transition between that last life and the next one that surely will become real sometime in the near future.  Maybe I’ll become a grandmother, or a new wife, or I don’t know what!  Sort of feels like it did at 18, when I went off to college and had no idea where my life was going to go, but I set off anyway sure that it will go somewhere. This time though, I have some limitations that I didn’t have last time I built a life.  It makes me mad.  Fightin’ mad.

I’m not mad at anyone in particular. I hope you read that title to mean I’m determined to fight and ready to go!  That’s what I am, not really mad.   Now that my MS has changed to Secondary Progressive I have to fight a lot harder to stay on top of it.   Interestingly, I am finding that the more I fight it, the more those efforts help and the more fighting I want to do.  I’m fighting it with a new energy I wouldn’t have thought possible a year ago.  As you know from my previous post, I have fought my body’s problems for the last 20 years, but now I have new weapons in my arsenal.

When my kids were little, my motivation to work hard against MS was to stay functional enough to raise them and to do that without them having to miss anything because their mom had MS.  Now the motivation is different, but not so different really. Now it’s me whom I don’t want to miss anything because of MS.  I want to have some part of the life I expected to have by my mid-50s, although that is probably somewhat unrealistic.  So, I will be happy with being able to continue to move around as I need and want to, to stay functional enough to hold and play with my grandchildren someday, and functional enough to work as best I can and enjoy the life I have.  There are certain things I can’t do anymore, dance a Chopin Etude en pointe, hike a national park, walk a foreign city’s length and breadth, or do an all-day shoot photographing out in the sun…but there are still things I can do, and that motivates me to keep working at it.  Those are the goals.

As part of the research that led to me writing this blog, I became interested in a lot of other blogs and websites relating to MS and the drugs and treatments that are used to treat it.  I’m learning a lot and talking to a lot of interesting people and that adds to my resolve and my ability to find ways to fight.  Some ideas and methods I use to fight it are tried and true ways I’ve done all along. I try to share those things with everyone else just in case they might find something I do to be helpful for them. I like reading other people’s experiences, too, for the same reason, it gives me more ammunition for the fight!

I’m not a person who has been anxious to try drugs in my 20 years with this disease. When I was first diagnosed, the only drugs offered to MS patients, at least that I was aware of, were either anti-seizure drugs or antidepressants.  When I was given Robaxin, it was given by the ER doctor because I was having muscle spasms, not because he thought I had MS. Actually, I don’t know if he suspected that or not, but when I got to the neurologist a few days later and told him that the Robaxin was helping, he said, “well, whatever works” and continued to prescribe it for me.  Steroids were sometimes used then, as they still are now, for acute emergency situations but my situation was not deemed an emergency requiring steroids. 

In the next several years after my diagnosis, drugs came on the market that promised to prevent progression of the disease; the interferon based drugs and the drugs that suppress the immune system to prevent its attack on the myelin sheath.  I never wanted to use these drugs and so I never did.  Maybe part of it was that once I achieved remission my symptoms were not so bad as to drive me to seek drug treatment, but the bigger part of that decision was that how those drugs were said to work scared me and I was afraid of what they might do to the healthy parts of my body.    

I continued without drugs through my entire Relapsing and Remitting course and a couple of years into SPMS, too, until summer, 2008, when my new neurologist suggested that I take part in a drug trial being conducted with the first drug ever developed specifically for Secondary Progressive patients.  It was a phase 3 trial, so the drug had been shown to be safe and I liked what I read about how it acted on the body and what it was supposed to do.  The best part was that there were no side effects observed other than soreness at the site of infusion…I didn’t even have that.  Early on in the protocol, I began to wonder how the company was going to adequately evaluate efficacy though, because it didn’t seem to be measuring many of the significant things that indicate improved function or lack of decline while focusing instead on rather insignificant observations and numerical data.  There were also several factors that affect function in MS patients that were not considered, like the heat we Southerners and South Westerners experience and how it temporarily exacerbates whatever symptoms to which we are prone.  I was afraid it was making it seem that we weren’t making progress when in fact we might have been, but had just come in from the heat when we were tested that time.  I joined the trial late in the enrollment period, in fact I was the last ID number assigned in the trial…such a distinction! 

So I was about to have my visit #5 when the announcement was made that the trial was being discontinued because the company was disappointed in the overall results shown in the patients who had completed the 2 year trial…they didn’t even let us all finish!   I was very disappointed.  I had such high hopes for that drug, such hopes that maybe my condition would not continue to deteriorate as it has in the past 2 or 3 years.  I called my research coordinator at the neurologist’s office and asked what was going to happen, and she told me things that were revealed to her and the doctor after the announcement was made and they were “unblinded”.  It turns out that patients in our trial group who received the drug were having good results.  She also told me that I had been on placebo although I felt like I got the drug because numbness in my feet had diminished during that time.  Not that it really mattered except to make me feel that I wasted 9 months on high hopes and going through that protocol.   Our neurologist is talking to the company about what can be done to maybe continue the trial or re-do it since she was seeing good result in her group, maybe out of her own research facility with their cooperation, of course.  I haven’t heard yet what new plans might be developing, if any, but I still have hope that the drug might yet become available again in trial and ultimately in approved use. 

In the meantime, I went into high gear yet again to see if there was anything else out there that might similarly help while not damaging the healthy parts of me.  I work really hard to keep my whole body healthy with diet, carefully selected supplements, and exercise and I am not willing to compromise my general health for a drug that might inhibit the MS but not for sure. Actually, I might not be willing to risk general health even for a sure thing because honestly, what good is tackling MS if the rest of your body falls apart in the process.  Again, maybe my case is just not bad enough to make me willing to try everything on the market, and for someone else the risk of organ damage might be worth it…I’m not at that point. 

It did not take long before I discovered several references online to a drug being used for MS and several other autoimmune diseases called Low-Dose Naltrexone. This is of particular interest to me because I have several other autoimmune diseases, too.  It would be great if LDN could help more than one of my health problems simultaneously. I discussed it with my neurologist and she had nothing but positive things to say about LDN and said that she has other patients doing well on it.  She wrote the prescription and I started taking it 2 weeks ago.  I think I am still adjusting to it a bit, but the adjustment symptoms have not been bad and I am feeling some improvement in muscle fatigue and maybe some reduction in heat sensitivity, too.  It has disturbed my sleep some, which adds a different fatigue problem, but the information I have found says that will pass as my body adjusts to the medication.   I am hopeful again with a new tool in my arsenal and we’ll see how it goes.  If you’re interested, there are some links to information about LDN on my Links page in the right margin.

All this talk about drugs when, in fact, I believe that by far the most important tool I have in this fight is my physical therapy regimen that has developed over the last year and discovered by accident. 

Entering secondary progressive MS after so many relatively benign years of remission, I feel like I’m re-living the phase after my first episode when I worked myself into that remission by forcing my body to do what it was failing to do normally.  I’m looking again for new ways to challenge my body to function better and re-build strength.  

I discovered physical therapy when an old injury was causing my left knee not to work well.  My orthopedic surgeon determined that building strength in the surrounding muscles and structures would help with function and as I built strength for that purpose, lo and behold, I found the workout helped counter the MS symptoms, too.  I began to add more exercises to build strength in other areas where I have weakness, and it worked.    I am working out with vigor I haven’t had for 30 years.  I’m working out hard for an hour or 2 each time and it not only is showing physical results but just plain makes me feel good…real good. I have noticed that with MS, my muscles can’t hold the strength I’ve built for very long before it starts to drain away again.  I find that I have to do my complete workout at least once but not more than twice per week or my strength and coordination decline again very quickly. I discovered early on that I can overdo the exercise and then the result is more weakness and muscle fatigue rather than less, so it is a fine line that a person with MS walks with physical therapy.  I especially appreciate that I have physical therapists to talk with about everything I’m doing or want to try, they make sure I’m doing it right, and give me a lot of encouragement to keep pushing to the degree that I can.  The MS prevents my building strength like I did when I was young, but it definitely has increased it enough to make a big difference.

My neurologist recently opened a new office, research facility and wellness and rehabilitation gym.  She recommended that I have an evaluation and consultation with one of the physical therapists in her gym who works especially with MS patients, so I did.  I am seeing the new PT once a week for a month while she is helps me learn new exercises for me to do to help areas that my strength building work neglects…mainly balance and core strength for full body and sort of diagonal movements.  It was very interesting in the evaluation to see clearly where my particular weaknesses lie and where I am able to maintain pretty good strength. She is very confident that I can do a lot more than I thought possible. Maybe I’m still a little skeptical about what I will be able to do, but I so appreciate her encouragement and confidence in me.  Once I learn the new routine well, I will be taking this new knowledge back to my regular PT gym and adding her suggestions to my regular routine.  I can do a lot of it at home, too, if I find that I need and can tolerate it more often than I go to the gym.

These therapists provide a huge new weapon in my fight that I didn’t have in the first round 20 years ago.  Physical therapy now is an interesting extension of what I did then, thinking that I was maintaining the electrical connections.  My new PT consult confirmed that in fact that is exactly what we are trying to do with the exercises; maintain connections, recreate connections damaged by MS, and build ways to compensate for lost functions. She says that I was right back then to do what I did instinctively.  WooHoo!  I always felt kind of dumb for coming up with that theory 20 years ago and have never told my doctors what I thought back then…now I won’t be shy about spreading that idea because it really does work and the PT and medical worlds recognize it now, too!  

Sometimes it’s very good to trust your instincts about your body and how you treat it…I think it’s good most of the time. 

I think it is my most valuable tool in the fight.

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It Would’ve Been Easy

September 7, 2009

I am a person who always looks for the good side of any situation.  I am finding it a bit more challenging to find the good side to things these days, but it’s not impossible.   In the last couple of years, my former Relapsing and Remitting condition changed to Secondary Progressive and the daily challenge has become harder than I ever imagined it would be. I still have to think there must be good sides to find somewhere;  it’s the only way I can stay positive.

My RRMS case was very mild, I only had two episodes in the 16 or so years before SPMS began to develop, the first episode in November, 1989, and the relapse five years later.  Once that initial episode had cleared, my life returned to normal. I raised my kids, built my business, made a new single life for myself after divorcing, all the while expecting the MS to continue as it had, never expecting it to change significantly.  Although the specter of threatened relapse was always there, I had returned completely to normal after both episodes so I wasn’t very worried. It’s my understanding now that what I am experiencing is a common transition that happens in women with RRMS when their hormones start to wane. Apparently, the loss of hormones somehow affects the MS process in the body.  If I had known that, if I had read that, if one of my doctors had told me that years ago, I would have structured my life differently and some things would have been easier today.  But that’s not the way it is, so now I find myself trying to find the good side of the present situation and a positive direction in which to move forward…hmmm.

I’ve been thinking a lot about my first episode.  I was 34 years old, a full-time mom with a husband and 2 small children at home, 8 months and 4 years old.  It began with sudden, bizarre muscle spasms while we were walking along in the zoo.  In the ER, after examining me and taking some tests which showed nothing abnormal other than the odd periodic muscle spasms, the doctor gave me a prescription for a central nervous system depressant for the spasms and told me to see a neurologist. (The ER doc prescribed Robaxin750, which helped; I still take it and it still helps.)  Back then, none of the doctors I saw had anything to offer for treating MS. They could treat some acute symptoms with steroids but there were no drugs on the market for treating the disease. 

For a month, maybe a little more, my mom was able and willing to stay with us and help with household duties. This was a great relief to me. The spasms continued periodically throughout the day, although not at night while I slept. The spasms also occurred when I attempted any movement and when I laughed.  I didn’t do much of that.  I felt like a useless burden to my family.  My speech as well as movement was affected during spasms.  I couldn’t sign a check, write a sentence, drive a car, pick up my baby, or comfort my son’s fears when the ambulance took me to the emergency room. I couldn’t join the family at the dinner table for that first month because being upright made me nauseous, and I couldn’t stand long enough to cook a meal.  My mom would bring the baby to me to nurse and cuddle her while she napped, but since I was unable to sit up I couldn’t do much more than that.  I was afraid I’d miss her first steps because she was clearly about to take them.  Thankfully, I did not miss her big achievement!

All that time lying there that first month, I did a lot of thinking about what I was going to do. The doctor had no suggestions and I had no access to the internet, so I read what books I could get my hands on so I’d at least understand what was going on in my body to cause the problems I had.  I was sure that I had MS, but that diagnosis was not official until almost a year later because the doctor had to “observe” for that long to be certain.   I didn’t care about waiting for it to be official; I decided I needed to do something about it myself. I began with forcing myself to walk.  I walked through the spasms sometimes using the stroller as a walker. I forced myself to do fine motor activities because it was so hard and I did things around the house even though it stimulated spasms. I even talked through the spasms when not in public, trying very hard to speak as clearly as possible.  I did more and more as I realized that the activities I did got better while the things I didn’t do did not. I figured that I was keeping the electrical connections there even if they were faulty. After 6 months, the spasms were no longer visible, though I could still feel something internally, always making me fear that full-blown spasms would return.  After a year, the spasms were gone, leaving only a strange background sensation in my muscles that I call “static” for lack of better word. The Robaxin minimized that sensation then, and still does.

The thought that it would have been so easy to give up back then shocks me to this day. It terrifies me to think how close I came to sitting down and never getting up again. That memory is the constant, ever-available good side that reminds me that I can do this.  It motivates me like nothing else can to know that if I could do it then, I can keep doing it now.  And if I have come this far since then, maybe I can go a lot farther.

Jan.

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My Life Without High Heels

September 3, 2009

I’m determined to keep my blog positive…no whining, no regrets, no false hopes, no pie in the sky…just positive, hopeful, reality.  The fact is though, sometimes the reality hits you in ways that are unexpected and sometimes it is those seemingly little things that bother you more than the more important things do…it’s because of what the little things represent.  So sometimes the conversation will be about those things.

On Style Network, there is a TV show called “Ruby.”  If you’ve never seen it, it’s about a woman who was very heavy, addicted to food, and how she is working very hard to lose weight and save her own life. No surgery, just healthy diet and exercise.  She is doing very well and is very determined to do it.  She is inspiring and endearing and I can often really relate to her struggle to find ways to handle the challenges that work for her. 

In a recent episode, Ruby was struggling with the idea of getting rid of the dresses she wore hundreds of pounds ago, scared to really believe she’ll never be 700 lbs again though she has now lost more than half of that.  I think more significantly, she was afraid to say good-bye to the old Ruby.

That hit me like a ton of bricks. 

I have 2 closets full of shoes; beautiful, stylish, dramatic, mostly high heeled shoes, boots and sandals.  I just can’t part with these beautiful shoes, even though I will never be able to wear or walk in them again. You would think that I would have accepted this by now since the last time I was able to wear high heels was in Oct, 2005.   (hey, I could wear them in a formal portrait, sitting there not moving!) (any excuse)   I have gotten rid of most of the dresses that I can’t wear without pretty shoes, but I just can’t get rid of the shoes.    

I don’t want to let go of the shoes because I don’t want believe that I will never be able to wear them again or that the old Jan is gone.  For Ruby, the change was something good and intentional and she quickly accepted it and moved on…for me, it’s different, unintentional and not good. 

It’s not the high heels themselves that are so important, it’s what they represent, it’s the life I don’t have anymore, the life I feel too young to have lost already, it’s the dressing up and being attractive, going out and having fun, meeting new people.  Am I shallow worrying about something so dumb?  Maybe.   But in my mother’s family, for generations the women have been very fashion conscious.  We’ve loved stylish clothes, accessories, hats, purses, gloves, and shoes.  So now, walking around in tennis shoes or those ugly oxfords, I’m not only odd woman out in the world I live in, but amongst the family women, too…not that any of them would ever say that to me, that’s just how I feel.  

Ruby made me think about  it out in the open, and face the shoes still piled in the closets, she made me face how I really feel about it, but I think I also realize that I really have accepted it and maybe I can get rid of the shoes…at least most of them.  After all, I deal with the 1000 necessary adaptations to this life every day, including what to wear to every occasion with ugly shoes.  Ruby’s friends asked her if she thought it was helpful to her progress if she was constantly reminded of her 700lb self by the big dresses still being in her closet.  In the end, it seemed for her a better encouragement to get rid of the dresses so that she only thinks about a future being thinner rather than holding onto that old Ruby and her unhealthy ways.  A friend made a comforter out of the dresses for her so they became a positive memento.

What about for me, is it unhealthy to have those shoes lying around reminding me of what I’ll never be again?  What is it that the presence of those shoes does for me?  I think at this point it’s nostalgia, souvenirs of the times when I wore them, places I went, things I did.  I don’t want to forget those times, don’t want to forget that me because I want to still be her even if I can’t wear the shoes. 

So maybe I can get rid of most of them and just keep the special ones that have special memories attached…after all, it’s tradition in my family to keep special pairs of shoes as mementos…my prom shoes, my daughter’s first pointe shoes, my mom’s wedding shoes…it’s not such a bad thing.

 Jan.

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Intro: What Was I Thinking?

September 3, 2009

Hi, I’m Jan.  I’m a youngish baby boomer, a mother of two, a sister, a daughter, an ex-wife, a good friend to many, a professional photographer, an accomplished amateur cook, a former ballet dancer and weight trainer, a music lover and fan of the Blues, an insatiably curious learner, a citizen of the world, and a full-time patient.

I have Multiple Sclerosis.  I have several other autoimmune diseases, too, and I really do Walk With a Big Stick. It lends security and balance to my steps but there’s more.  I follow what the old adage says: I “speak softly” about my health care, sharing what I learn, talking with my doctors, research coordinators, and physical therapists about their perspectives, but I “carry a big stick” that represents the courage and determination to find what works for me and to not surrender to my conditions. The real stick reminds me to never forget what I’m doing or how I’m doing it and it reminds me never to give up.   So I proudly, and with confidence, Walk With a Big Stick.  Well, most of the time…

I like doing research. In the last 10 years since I got internet access, I have spent a considerable amount of time reading and searching online for information about all health issues that are of concern to me, especially new treatments and the possible interaction between my drugs and supplements.  I also subscribe to several medical newsletters online that report of new findings, new drugs, new treatments, new discoveries, all that. 

That’s all great, but really when it comes down to how we are going to deal with the little daily challenges of life with our conditions, whatever they may be, the medical publications and our health care providers are not the best sources for help and support. It’s not that they don’t care, it’s that they have never experienced it, they don’t know what it feels like in our bodies, and frankly, they don’t have the time to spend on that kind of stuff with a whole bevy of patients to care for. We need them to keep up with the massive amount of new medical info they apply to our care every time we see them.  We need each other to help figure out how to solve the little things that challenge us in every hour of our daily lives and to provide support for how it feels to have to face those challenges. 

So that’s what I was thinking…in this blog, Walk With a Big Stick, we can talk freely about how we think and feel, what we have discovered that works for us, ask each other questions, tell our stories, express what’s on our minds, and we can talk with each other about all of it.  We can share medical information if you like, as long as you understand that we share as friends, not as medical advisors.

My posts here will be about my life, things I’m experiencing or thinking about, sometimes directly related to my health and sometimes not. As you know from your own life, everything in my life is colored by my challenges and that’s what I’ll share. I hope that my thoughts will spur you to write back with your own thoughts and experiences and I look forward to conversations developing in the comment sections to all my posts.

I’ll be back soon.

Jan.

h1

Walk With a Big Stick

August 6, 2009

my life without high heels

I’m anxious to get started writing in my new blog, anxious to see where this adventure in self-discovery and exploration of options and solutions takes me, and very anxious to hear back from other people about their experiences, too.  I’m getting this site set-up finished and will start in earnest very soon…stay tuned!

Jan.