WHAT MS HAS DONE FOR ME

Anybody who has MS will tell you what a pain this disease can be, both literally and figuratively.  The brain fog, pain, fatigue, temperature sensitivity, bathroom problems, banding, mobility issues, speech problems...it just keeps on giving.  Don’t even get me started on what it does for women who are also going through menopause!  The side effects from the high-powered meds can be just as devastating.  They can cause platelet and other blood levels to drop as well as complications for liver function.  The potential flu-like side-effects can be loads of fun too.   

All this and the fact that it’s virtually invisible to the outside world make MS the party you wish you hadn’t attended.

Still, the meds are good!  I just got done with my fifth brain MRI in nine years.  The results say that the disease hasn’t progressed and my bloodwork tells me that I’m not suffering from the more serious side-effects at the moment.  For this, I thank God, my family (genetic, church and otherwise), my doctor, good medicine, and pure stubborn determination.

Yes, there’s a positive...a flip-side as those of us say who can remember what a 45 RPM record looks like. MS forced me into a few things I’d like to share.  Here are the positives...yes, positives!

1.  Upon realizing what MS banding does to my stomach after a full meal, I decided to lose weight.  I lost fifty pounds and have mostly kept it off for the last seven years.  It helped.  I still feel that tightening when everything pushes to my tummy but it’s not nearly as bad.  As a bonus, my blood sugar and blood pressure are lower. 

2.  I began to exercise regularly.  I do yoga every morning and ride an exercise bike at night. I really think this has been a huge factor in keeping me going.  I’ve never been flexible but I’m a lot more flexible now than I was when I was in my twenties.  It’s always a hoot to watch the reaction I get when I’m able to get up and down without stumbling.  People who know about the disease don’t expect that and it’s a small victory for me.

3.  I am proactive about researching what’s good for me and what isn’t.  I've learned a lot about acupressure and alternative ways to handle pain and maintain health.  

4. I try to eat more healthy and organic foods and I avoid aspartame and other artificial sweeteners because I’ve seen what they do to my system. 

Except for the MS, my general health is better than it ever was before.  I don’t think I would have accomplished most of it if I hadn’t been pushed into it because of MS.  So there is a silver lining.  I’d love to hear about yours!

Fear and Multiple Sclerosis

It’s been a while.  I’m great with fiction but when it comes to blogging it’s just empty air with a few words scattered around unless I have something important I need to convey. So, yes, it’s been a while.

This morning, our priest, Father Furman Buchanan, made a comment in his sermon that struck me as very important.  Along with a thousand other things, I love and respect Father Furman for his ability to tell a wonderful story and his unique take on life that seems to clarify so much.  Forgive me for paraphrasing; if I’d known how important this would be, I’d have written it down.  Father Furman said that fear is a normal part of our lives.  The way we handle it, makes all the difference. 

It occurred to me that when you have a chronic disease like Multiple Sclerosis, fear is a constant.  You worry about the new ache in your back that wasn’t there last week.  You worry about the fact that you went into a brain fog earlier and couldn’t remember the name of the guy you’ve known for ten years.  It was on the tip of your tongue and you just couldn’t spit it out.  You worry because you tripped going across a completely flat surface. You wonder if these are temporary MS symptoms or if they are the beginning of something bigger.  Or, even more disturbing, could this be a sign of some other, strange and frightening ailment in the initial stages? 

I’ve had nothing short of miraculous health for an MS patient.  I suffer from pain, banding (MS hug,) fatigue and a number of other issues, but I’m still quite mobile and do mostly what I need to do.  Yet, when Annette Funicello died from MS complications, I kept seeing her in that chair, needing assistance for everything and fearing that I, too, would be there one day.

 

Let’s face it, I’m a worrier...my bitten nails are proof.

So what do I do about fear?  How do I handle it?

1.  I inform myself.  I read everything I can about whatever is bothering me.  I also try to remember that not everything you read on the internet is factual.  You can contract lung cancer if you check the internet for symptoms of your chest cold.  So use reason and don’t let your imagination get the best of you.  Being informed gives you a head start and helps you know your options.

2. I ask my doctor.  (I have a real fear that my doctor is going to tell me something I don’t want to hear, so this is a tough one for me.)  I write down my questions so I’m ready whenever I get to sit down with my neurologist.  He listens and really tries to allay my fears.

3.  I take my health seriously.  I do yoga, and ride an exercise bike every day to keep in shape.  I take Vitamin D and other supplements that seem to be beneficial.  I watch what I eat and keep a look out for new developments that might help me.  Taking an active part in my health is something I can control and for a control freak like me, that’s important.

4.  I meditate.  That’s right; I really believe that positive imaging and positive thought go a long way in making me feel better.  Mind over matter is a very big tool when handling pain and uncertainty.

5.  Along the same lines as meditation, I pray for others and for my own health.  I have a list of people that I pray for daily and many that come and go.  I’m an Episcopalian, and we tend to be a very loving, accepting lot, so I know others are praying for me, too.  When I pray I feel connected to a world of people who care for each other and that somebody stronger than myself has a hold on the situation. 

6.  Finally, I challenge myself.  When I feel really bad and fear the worst, the temptation is to take a nap (which I sometimes do) but I find that involving myself in projects to help myself or somebody else, will actually alleviate some of the physical symptoms.  When I’m writing, or helping someone else, or going shopping with my husband, I forget the worst and get on with my life.

For MS patients, fear can be a constant but that doesn’t mean you have to give in to it.  Live your life and take care of yourself so others won’t have to.

The Jolly Holidays, Meditation, and a Vitamin D Study.

Hello everyone.  No I haven’t disappeared, just got busy.  November and December are two my toughest months because of multiple school visits, speaking engagements and signings.  By the time the holidays roll around, I’m already bushed, but the holidays wait for no man...or woman. 

Let’s give that a bit of attention first.  I love Thanksgiving, Christmas and New Year’s. With my daughter’s engagement, we’ve also added Hanukkah into the mix.  That’s a new joy for all of us.  It’s a pleasure to spend time with family and friends, but when you’re going, and hosting, and cooking, it can also wear you down.  Holidays often bring as much stress as fun.  As with any chronic illness, MS likes to take your stress and make it so much worse.  I once asked the nurse at my neurologist’s office why it was so much busier than usual that day, (right around the holidays).  She told me that MS patients as well as other neurological patients have tons more issues at the holidays.  Not surprising. 

So, what to do?  Of course, you want to keep up your meds and watch your health in all aspects.  It’s extremely important to stay as physically fit as you can in order to keep the MS flair-ups at bay.  But it’s also very important to keep emotionally and spiritually fit.  I am a real believer in mind over matter.  I am a Christian, Episcopalian.  We go to church regularly and I have a strong belief in the power of prayer.  I hope you also have a spiritual avenue that helps support you in this way.  I also believe in meditation.  This can take any form you like, including prayer.  I do daily yoga to help flexibility and relieve stress, but I also meditate for at least ten minutes each day.  There are lots of meditation programs out there to help you focus your mind and body to stay healthy.  I use one I found online along with mental images of my body healing itself.  It really has proven to be a valuable tool to keep me healthy.  If that’s too out there for you, then just remember that a positive mental attitude has been proven to lead to healthier living. 

Along with that comes a new study. 

“Vitamin D may slow the progression of multiple sclerosis (MS) and also reduce harmful brain activity, a new study suggests.

Correcting vitamin D deficiency early in the course of the disease is important, according to the report, published online Jan. 20 in JAMA Neurology.”

http://consumer.healthday.com/cognitive-health-information-26/brain-health-news-80/vitamin-d-may-aid-ms-patients-684034.html

http://www.medpagetoday.com/Neurology/GeneralNeurology/43974

     I mentioned the benefits of Vitamin D in a previous blog, but now it is gaining validity.  The upshot is that more study is needed but most neurologists now agree that Vitamin D seems to slow disease progress by slowing the appearance of plaque in the brain.  They haven’t determined how much Vitamin D is necessary or whether you should be only up to par or beyond normal daily allowances.  They also don’t know whether supplements or actual sunlight make a difference. 

     Still, though, it can’t hurt to get a bit more Vitamin D in your diet.  Talk to your doctor to determine how much.  Don’t take a chance and overdose.  You want enough but not too much.

   Take care of yourself so others won’t have to.

   Melinda

MRIs and All that Other Junk You Have to Deal With 10-11-13

You close your eyes and try to make out your grocery list or maybe sing Christmas carols while monkeys with sticks beat out Beethoven’s Fifth on the metal cylinder you’re stuck inside.  You try really hard not to think about the fact that the enclosure is only inches from your nose.  The cool air they blow through the MRI machine helps with the illusion, but only if you don’t open your eyes.  Then your throat starts to tickle.  The monkeys have now traded Beethoven for their imitation of space invaders and you really need to cough.  The tech told you to be as still as you can so you try to stifle it.  When it finally emerges, you sound like you’ve got a serious case of bronchitis.  You give in and squeeze the bulb they gave you in case of emergency.  “I’m sorry,” you whisper between spasmodic coughing, “can you just give me a second?”  The tech patiently waits until you’re done and you wonder if you might have coughed hard enough to mess up the whole test.  Maybe they’ll call you in for a re-test.  The fun just goes on and on.

Can you tell I just finished having an MRI?  My neurologist usually orders one every couple of years or so just as part of routine maintenance.  Mine came back just fine.  Teri, the absolutely wonderful doctors’ assistant, who by the way has the most comforting voice in the world, called to tell me, “It’s all good, Melinda.  Your scan is stable.  No change from last time.”  To that I gave a great big WHEW!.  That meant the meds are still working and the disease hasn’t progressed.  HOORAY!

I don’t know what’s worse, going through the actual MRI, or waiting for the results.  In the time it takes for my doctor to get the results, read them and get back to me, my imagination conjures up all sorts of nasty stuff.  Really, he sometimes has Teri call me before the day is out.  It’s never more than a couple of days, but I can’t help it.  I’ve been blessed with a great imagination.  Unfortunately, in this case, it’s also a curse.  This time it took two days to get the word from my neurologist.  In that time I had the following thoughts:

1.  Did they discover a brain tumor while they were searching for MS progress?  Those sinus headaches might not be sinus.

2.  Did they find evidence of early onset Alzheimer’s and they’re trying to come up with a way to tell me?  After all, I have gone through several “senior moments” lately.

3.  Is the disease progressing?  (This, unlike the others, is a realistic fear.)

Fortunately, Teri’s cheery voice informed me that I was good to go.  I love you, Teri.

So here’s the thing.  If I’m in good shape, brain-wise, and my blood work came back with all good results, then why have I felt so rotten all summer?  All summer long, I’ve had numbness of my throat, lips and tongue, extreme indigestion and serious fatigue.  Surely that means there’s something happening with my MS. 

After a few other tests here’s what I’ve discovered.  I have acid reflux.  Doesn’t sound like a big deal except that there’s no condition that MS can’t jump on and make worse. Now that we’ve started treating the acid reflux, I feel normal again.

So here’s the point of the whole blog. ARE YOU LISTENING?  Your MS symptoms can flair up at any time, but when something else is wrong in your body, MS can add to the problem, making it very hard to determine what’s going on.  Is it MS or something else?  If you have something nasty happening, write it down, keep a log or make real observations about what happens and then see your regular doctor, and/or your neurologist.  Do your research, but don’t self-diagnose.  Only you can feel what’s happening inside your body, but sometimes only testing can determine what’s really happening.  Nobody wants to go through these tests because of what they might reveal.  But do yourself a favor and check it out anyway.  It’s better to know and take action that to let the bad stuff take over. 

Take care of yourself…so you have time to live your life the right way.

One Good Thing and One Bad Thing: 9/4/2013

Shortly after being diagnosed with MS, friends began sending me links and articles that promoted some things and panned others in regard to MS.  You’ve probably noticed from my general attitude that I take a very proactive stand on my health.  I believe in doing everything I can to keep myself in good running order.  But there’s a ton of information out there; some it isn’t necessarily valid.  It’s my hope that I can give you a fair representation of what is real and let you make your own decision.  I’ll also let you know how I, personally, handle each item.

Today, we’re going to look at artificial sweeteners as well as vitamin D.

Unless you’ve turned off all media for the last 20 years, you know that there has always been some controversy about the safety and effectiveness of artificial sweeteners.  Saccharin has been shown to cause cancer in lab rats.  Aspartame may cause a form of nerve toxicity.  The list goes on.  I did some research and found out that there is no conclusive proof for any of it.  Please note the link for the Multiple Sclerosis Foundation, http://www.msfocus.org/article-details.aspx?articleID=40 as well as the Snopes article on the same http://www.snopes.com/medical/toxins/aspartame.asp

On the other side of the fence there are articles like the following that claim that no artificial sweetener is safe and some are extremely dangerous. http://www.policymic.com/articles/16014/artificial-sweeteners-why-you-should-completely-avoid-them-to-stay-healthy

Having said that, it’s important to note that many people have noticed an adverse effect from artificial sweeteners in their diets.  In addition, many scientists have noted that artificial sweeteners cause us to crave sweets and therefore gain weight.  There is no denying that even though the evidence is inconclusive there seems to be a definite correlation between artificial sweeteners and muscle control in MS patients.  The following are two links to discussion boards on that very topic: http://www.healthcentral.com/multiple-sclerosis/c/question/98314/154315,    http://community.babycenter.com/post/a36594526/say_no_to_aspartame_and_artificial_sweeteners_my_story...  You will find tons of these online.

My side…I don’t use the stuff, period.  When I first found out about my MS, I was downing several diet drinks a week in order to cut calories.  After reading up on this confusing phenomenon, I decided to go back to sugar or do without.  It would be unfair to say it made all the difference in my life, because I made a lot of positive changes.  However, I will note that if I accidently consume artificial sweeteners, like when I slipped up at the church pancake supper and used sugar-free syrup, only to realize it half-way through my pancakes, I noticed a difference in my ability to stay mobile.  For me this is a no-brainer.  Why risk something that could potentially cause damage when I can control it?  I drink mostly water and coffee now, and I like it.  I use peanut butter, fruit, honey, or just plain sugar to sweeten things in moderation.  The jury is still out on Splenda and on Stevia but I avoid them because I can’t be sure.  I’ve recently convinced my husband to cut back on artificial sweeteners.  He’s diabetic, so that took a lot of convincing.  He’s lost ten pounds over the last month and tells me he feels better.  Again, who knows the actual causes, but I think cutting down on the artificial stuff has helped.

Now for the good thing:  Vitamin D.  I was told from the start that Vitamin D would help.  You know I checked it out.  

“A study conducted by researchers at the University of Oxford and another conducted at the New Jersey Medical School have suggested that maintaining adequate levels of vitamin D may have a protective effect and lower the risk of developing multiple sclerosis (MS). Another study conducted at Maastricht University in the Netherlands and others suggest that for people who already have MS, vitamin D may lessen the frequency and severity of their symptoms.”  http://www.mayoclinic.com/health/vitamin-d-and-ms/AN01894.  

“People with high levels of vitamin D in their blood have shown a lower risk of developing multiple sclerosis, according to results of a Swedish study released Monday. The new study adds to a growing body of research suggesting a link between vitamin D and MS, an autoimmune disease that affects the brain and spinal cord that is believed to afflict more than a quarter-million Americans” http://online.wsj.com/article/SB10001424127887323353204578129280745162230.html.

Vitamin D deficiency has been shown to correlate with MS symptoms.  

On the other side of that coin, you can cause toxicity with too much Vitamin D.  Ask your doctor about your D levels.  Where do we get it? From the sun of course.  That’s the best way, but I don’t stay out in the sun very much because MS folks can’t take the heat.  When I do go out I use tons of sunblock.  Milk is another good source but I don’t drink that either because of a milk allergy when I was younger. Fish oil, salami, ham, and eggs are good too.  http://www.healthaliciousness.com/articles/high-vitamin-D-foods.php  I take a supplement but try to be reasonable about it; all things in moderation.

So, if you got tired of reading this long blog, take this with you as the upshot.  Stay away from artificial sweeteners if you aren’t sure.  They don’t really seem to help much and could be harmful.  Get lots of good old Vitamin D in your diet.  Take care of yourself so others won’t have to!  With love.

Weight, Exercise, and Lifestyle

Less than a year after I was diagnosed with M.S., my extended family celebrated Thanksgiving.  During the previous Thanksgiving, I was stumbling around and holding onto furniture, so this one was markedly better.  But with the holidays, comes stress, and with stress M.S. flair-ups inevitably follow.  I had been fortunate enough to avoid any major flair-ups since my diagnosis.  The ones I experienced were minor and temporary; an occasional bout with imbalance, weakness, or fatigue; sometimes slight banding.

That day, after a full Thanksgiving dinner, the banding set in.  This time, it was stronger, tighter.  M.S. patients have described this sensation as a tightening of the muscles around the abdomen and chest that is often comparable to a heart attack.  As a matter of fact, many have made that trip to the E.R. fearing that very thing.  You may have difficulty breathing and find that the pain is incredible.  (Whoever dubbed it the M.S. hug should be taken out and wrapped in tight metal bands until they beg for mercy.  It is as much like a hug as a house fire is like a birthday candle.) 

Yes, it scared me but I recognized it for what it was.  But here’s the thing; after eating a huge meal, the banding pushed every bit of fat around my waist to my stomach area.  It was truly uncomfortable.  Talk about trying to hold your belly in!  This began to happen more and more frequently, to the point where a student in a class where I was subbing asked me when my baby was due.  I was 47 years old, so you know I wasn’t planning on having any more babies.  Before Christmas, I decided that if I wanted to get through this I’d have to lose some weight; the less fat there is to push around, the less discomfort I’d suffer through when it hit, right?  Also, the more weight you carry, the harder your muscles and joints have to work to support it.  Basic movement becomes a lot harder than it has to be. 

So I found a diet that worked for me.  That sounds a lot easier than it was. In fact, if you’re like me and have always loved good food, then you know how hard this can be.  I lost 50 lbs. on the “Flat Belly Diet” and have managed to keep it off for about five years now.  It helped a lot, and boy did I LOVE the compliments I got.  I still band, especially when I’m tired or stressed, but it isn’t as hard to handle now.  The added benefit for me is that now my blood sugar and blood pressure are also in control.  Those were a big problem before.

Along the same line, exercise also made a difference.  M.S. robs you of strength in your limbs and causes spasticity especially around the joints.  I have a hard time with walking very far or running at all for obvious reasons, so I began riding an exercise bike for 30 minutes every night just to keep my knees flexible and my legs strong, but it had the added bonus of a decent workout.  I also do yoga each morning for about 30 minutes.  It’s a simple routine that helps me to focus, relieve stress, and strengthen my muscles.  It also helps me manage pain and increases my flexibility.  I’ve always been about as flexible as a steel rod, so this is a big thing for me.

I’ll spend more time with healthy foods, yoga and other workouts on another blog, but here’s what you can hopefully take away today. 

1.       If you can manage it, keep your weight down.  It’s tough, but it really makes a huge difference in the way you feel.  Find a diet that you can stay on, and once you lose the weight, maintain it with sensible eating.  I try to eat a healthy diet with smaller portions now. I still splurge on deserts but with some common sense it works.

2.       Find a workout that you like and can keep up on a regular basis.  I love my stationary bike because I can listen to a book on audio while I’m riding.  I love yoga because it keeps me strong, flexible, and much calmer.  By the way, if being with others makes it easier to work out, then by all means, go to a class or a gym!  If you prefer to do this privately, there are lots of available workouts on Hulu, Netflix, DVD, etc.  

If you have a busy lifestyle, and most of us do, then you really have to make an effort to incorporate these into your daily routine.  But please don’t put them off. Your doctor can help you decide the best way for you to handle diet and exercise.  Do yourself a favor and be proactive.  As an M.S. patient, if you don’t take care of yourself, then someone else will have to do it for you.

Multiple Sclerosis...My Story

Aug. 12, 2013

This is a blog for MS patients and those who love them.  I hope to share ideas that have made my life easier as an MS patient as well as the stories of others.  Please remember that nothing replaces a good relationship with your neurologist.  MS is extremely varied in the way it affects people, so what works for me may not work for you; I can only tell you what I’ve learned and hope it helps.

Let me start with my own personal story.  In 2005, just before a trip to Disney World with my family, I began feeling a slight numbness in my toes.  As with most illnesses, I hoped that if I ignored it, it would go away.  It didn’t.  Instead, it began to creep into my calves.  I mentioned it to my doctor at my regular checkup and he told me it was likely to be some form of neuropathy, which can occur for no good reason.  Still, over the next eighteen months, he sent me to a rheumatologist, a neurologist, and an endocrinologist.  None of them could put a finger on what was happening. 

In the meantime, the numbness was working its way into my knees.  It was a partial numbness that didn’t stay with me all the time.  By the middle of 2006, my writing career was taking off and my books were selling. Schools were frequently requesting that I visit to talk to kids about literacy.  Since you can’t do that while teaching in your own classroom, I made the painful decision to give up teaching to write full-time. Before I left my classroom permanently that spring, I realized that I could no longer reach the end of the eighth grade hall without feeling as if my legs were going to give out on me.  My doctors were still trying to figure out what was going on.  Then my balance went wacky.  I couldn’t walk across the hallway without tripping or falling sideways. I’d spent hours self-diagnosing on the internet with no luck.  A couple of times, my research sent me to the words, Multiple Sclerosis, but I figured that just wasn’t possible.  Nobody in my biological family had it.  What were the chances? 

Whatever was wrong with me, I decided that if this creeping numbness continued into my heart and lungs, I would die.  I must be dying. I began to put my affairs in order, thinking that my kids might have to attend college without me to back them.  My husband would be left alone to handle all of the stuff we had dealt with together over the years.  Of course, I didn’t tell anybody that at the time.  They’d think I was crazy, right?   I went back to the neurologist, and this time he decided to do an MRI.  That was loads of fun.  I’ve since learned to tolerate them without much grief.

I remember that all of these tests were happening over Christmas holidays and it was hard to be jolly with all of that hanging over my head.  In early January, Dr. Cunningham told me that I likely had MS and he’d confirm it with a spinal tap.  I cried when he told me, but my husband was there to hold my hand.  Dr. Cunningham asked me, “What do you know about MS?”

Images of wheel chairs and crutches and death raced through my brain.  They were the only visuals I had about the disease.  I’ve always believed that if you get the worst case scenario out in the open air, first, the rest is not so hard.  “Sometimes,” I blurted out, “you can die from it.”

He gave me a gentle smile and shook his head.  “Not so much,” he told me.  And with that out of the way, it got easier.   An infusion of steroids brought me back to a semi-normal state, though I’ll always have some numbness and imbalance.  I told my friends and family, not surprisingly, with tears.  They responded in kind.  Some looked at me with pity; others with a knowing expression that said, “You will get through this.”  I liked the second one better so that’s the one I decided to go with.

These days, I experience banding (a tightening in the chest also called the MS Hug), numbness in my throat and legs, occasional dizziness, sensitivity to heat, and of course, the ever-present, imbalance, and fatigue.  Thankfully they don’t all happen at once.  None of these, however, have stopped me from going through my daily routines.  

In this blog, I want to try and share my journey through this disease and its daily battles, most not seen by others.  We’ll talk about symptoms, things that have helped and the experiences of others.  Please feel free to comment.  I want to hear from you.