Posts Tagged ‘MS’

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If The Shoe Fits

September 29, 2009

I’ve been doing a lot of research and networking on MS sites lately.  I spread the word about my own blog that way and I learn a lot in the process.   I have found a lot of blog sites where conversation is quite lively and other sites that give information of all kinds.  Even better, I’ve made some new friends from all over the world.  You can meet some of them in the comment section of my blog here or on my Facebook pages linked in the right margin. The question and answer type blog sites are packed with people and they talk about all kinds of things…mostly related to MS, but sometimes not…interesting either way!  I look forward to meeting more of you commenting on my blog stories and starting conversations here, too.

Someone asked me the other day why I put links on my blog that don’t exactly match my way of thinking….well duh!  I am sure that everyone reading my blog has a mind of his or her own and might think differently from me!  I put links on here that have information of all kinds and from as many sources as I can find not only because I want to know what’s going on out there but also because the more information you and I have, the better we can evaluate what treatments and approaches might be best for us in our individual situations. 

My thought is, read all the information, try it on for size, and if the shoe fits, take it home with you.  If not, leave it for someone else.

When I go see the doctor, I like to go with questions and topics in hand that I’ve read about online and think might be worth considering for my own treatment.  That has often helped my doctor and me to better match treatment options to my needs and my preferences and thereby choose treatments that work best in my life, and that’s very important.  After all, treating our MS is really about maintaining quality of life and understanding how that is defined by each of us as individuals is the key to achieving the best quality of life possible. The only way to really do that is to consider the pros and cons of all the options, to hear the info from the doctors, the drug companies, and the patients who go before us, and then really think about how we feel those options would, or would not, make our lives better.  We have to be well informed in order to participate in defining and maintaining the life we can have despite MS.  It’s by participating that we will get what we want…to the degree that it’s possible.

I work on this research and networking almost every day and I find more stuff to list almost every day.  Even when I don’t find a new site, I find new info posted on sites I frequent and that’s great, too.

I hope you’ll take a look at the Links page in the right margin and check it regularly for new ones.  I look forward to a growing group of you joining our conversations here and on my Facebook pages, too.  I am so enjoying getting to know you all! 

Jan.

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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