Wednesday, December 14, 2011

Website Wisdom

I shamelessly stole the wisdom below from I think I just found my resolution list for 2012.

30 Things to Stop Doing to Yourself

When you stop chasing the wrong things you give the right things a chance to catch you.

As Maria Robinson once said, “Nobody can go back and start a new beginning, but anyone can start today and make a new ending.”  Nothing could be closer to the truth.  But before you can begin this process of transformation you have to stop doing the things that have been holding you back.
Here are some ideas to get you started:
  1. Stop spending time with the wrong people. – Life is too short to spend time with people who suck the happiness out of you.  If someone wants you in their life, they’ll make room for you.  You shouldn’t have to fight for a spot.  Never, ever insist yourself to someone who continuously overlooks your worth.  And remember, it’s not the people that stand by your side when you’re at your best, but the ones who stand beside you when you’re at your worst that are your true friends.
  2. Stop running from your problems. – Face them head on.  No, it won’t be easy.  There is no person in the world capable of flawlessly handling every punch thrown at them.  We aren’t supposed to be able to instantly solve problems.  That’s not how we’re made.  In fact, we’re made to get upset, sad, hurt, stumble and fall.  Because that’s the whole purpose of living – to face problems, learn, adapt, and solve them over the course of time.  This is what ultimately molds us into the person we become.
  3. Stop lying to yourself. – You can lie to anyone else in the world, but you can’t lie to yourself.  Our lives improve only when we take chances, and the first and most difficult chance we can take is to be honest with ourselves.  Read The Road Less Traveled.
  4. Stop putting your own needs on the back burner. – The most painful thing is losing yourself in the process of loving someone too much, and forgetting that you are special too.  Yes, help others; but help yourself too.  If there was ever a moment to follow your passion and do something that matters to you, that moment is now.
  5. Stop trying to be someone you’re not. – One of the greatest challenges in life is being yourself in a world that’s trying to make you like everyone else.  Someone will always be prettier, someone will always be smarter, someone will always be younger, but they will never be you.  Don’t change so people will like you.  Be yourself and the right people will love the real you.
  6. Stop trying to hold onto the past. – You can’t start the next chapter of your life if you keep re-reading your last one.
  7. Stop being scared to make a mistake. – Doing something and getting it wrong is at least ten times more productive than doing nothing.  Every success has a trail of failures behind it, and every failure is leading towards success.  You end up regretting the things you did NOT do far more than the things you did.
  8. Stop berating yourself for old mistakes. – We may love the wrong person and cry about the wrong things, but no matter how things go wrong, one thing is for sure, mistakes help us find the person and things that are right for us.  We all make mistakes, have struggles, and even regret things in our past.  But you are not your mistakes, you are not your struggles, and you are here NOW with the power to shape your day and your future.  Every single thing that has ever happened in your life is preparing you for a moment that is yet to come.
  9. Stop trying to buy happiness. – Many of the things we desire are expensive.  But the truth is, the things that really satisfy us are totally free – love, laughter and working on our passions.
  10. Stop exclusively looking to others for happiness. – If you’re not happy with who you are on the inside, you won’t be happy in a long-term relationship with anyone else either.  You have to create stability in your own life first before you can share it with someone else.  Read Stumbling on Happiness.
  11. Stop being idle. – Don’t think too much or you’ll create a problem that wasn’t even there in the first place.  Evaluate situations and take decisive action.  You cannot change what you refuse to confront.  Making progress involves risk.  Period!  You can’t make it to second base with your foot on first.
  12. Stop thinking you’re not ready. – Nobody ever feels 100% ready when an opportunity arises.  Because most great opportunities in life force us to grow beyond our comfort zones, which means we won’t feel totally comfortable at first.
  13. Stop getting involved in relationships for the wrong reasons. – Relationships must be chosen wisely.  It’s better to be alone than to be in bad company.  There’s no need to rush.  If something is meant to be, it will happen – in the right time, with the right person, and for the best reason. Fall in love when you’re ready, not when you’re lonely.
  14. Stop rejecting new relationships just because old ones didn’t work. – In life you’ll realize that there is a purpose for everyone you meet.  Some will test you, some will use you and some will teach you.  But most importantly, some will bring out the best in you.
  15. Stop trying to compete against everyone else. – Don’t worry about what others doing better than you.  Concentrate on beating your own records every day.  Success is a battle between YOU and YOURSELF only.
  16. Stop being jealous of others. – Jealousy is the art of counting someone else’s blessings instead of your own.  Ask yourself this:  “What’s something I have that everyone wants?”
  17. Stop complaining and feeling sorry for yourself. – Life’s curveballs are thrown for a reason – to shift your path in a direction that is meant for you.  You may not see or understand everything the moment it happens, and it may be tough.  But reflect back on those negative curveballs thrown at you in the past.  You’ll often see that eventually they led you to a better place, person, state of mind, or situation.  So smile!  Let everyone know that today you are a lot stronger than you were yesterday, and you will be.
  18. Stop holding grudges. – Don’t live your life with hate in your heart.  You will end up hurting yourself more than the people you hate.  Forgiveness is not saying, “What you did to me is okay.”  It is saying, “I’m not going to let what you did to me ruin my happiness forever.”  Forgiveness is the answer… let go, find peace, liberate yourself!  And remember, forgiveness is not just for other people, it’s for you too.  If you must, forgive yourself, move on and try to do better next time.
  19. Stop letting others bring you down to their level. – Refuse to lower your standards to accommodate those who refuse to raise theirs.
  20. Stop wasting time explaining yourself to others. – Your friends don’t need it and your enemies won’t believe it anyway.  Just do what you know in your heart is right.
  21. Stop doing the same things over and over without taking a break. – The time to take a deep breath is when you don’t have time for it.  If you keep doing what you’re doing, you’ll keep getting what you’re getting.  Sometimes you need to distance yourself to see things clearly.
  22. Stop overlooking the beauty of small moments. – Enjoy the little things, because one day you may look back and discover they were the big things.  The best portion of your life will be the small, nameless moments you spend smiling with someone who matters to you.
  23. Stop trying to make things perfect. – The real world doesn’t reward perfectionists, it rewards people who get things done.  Read Getting Things Done.
  24. Stop following the path of least resistance. – Life is not easy, especially when you plan on achieving something worthwhile.  Don’t take the easy way out.  Do something extraordinary.
  25. Stop acting like everything is fine if it isn’t. – It’s okay to fall apart for a little while.  You don’t always have to pretend to be strong, and there is no need to constantly prove that everything is going well.  You shouldn’t be concerned with what other people are thinking either – cry if you need to – it’s healthy to shed your tears.  The sooner you do, the sooner you will be able to smile again.
  26. Stop blaming others for your troubles. – The extent to which you can achieve your dreams depends on the extent to which you take responsibility for your life.  When you blame others for what you’re going through, you deny responsibility – you give others power over that part of your life.
  27. Stop trying to be everything to everyone. – Doing so is impossible, and trying will only burn you out.  But making one person smile CAN change the world.  Maybe not the whole world, but their world.  So narrow your focus.
  28. Stop worrying so much. – Worry will not strip tomorrow of its burdens, it will strip today of its joy.  One way to check if something is worth mulling over is to ask yourself this question: “Will this matter in one year’s time?  Three years?  Five years?”  If not, then it’s not worth worrying about.
  29. Stop focusing on what you don’t want to happen. – Focus on what you do want to happen.  Positive thinking is at the forefront of every great success story.  If you awake every morning with the thought that something wonderful will happen in your life today, and you pay close attention, you’ll often find that you’re right.
  30. Stop being ungrateful. – No matter how good or bad you have it, wake up each day thankful for your life.  Someone somewhere else is desperately fighting for theirs.  Instead of thinking about what you’re missing, try thinking about what you have that everyone else is missing.
What do you think? With December quickly coming to a close, are you thinking about resolutions for the new year yet?

Tuesday, December 13, 2011

Crazy or Lucky?

I have an incredibly low level of MS disability. I have low vision. That's it. Most people don't even know until I tell them. I don't walk around with a red-tipped cane and I do not have a seeing-eye dog or a miniature horse.  But, I no longer drive, I prefer reading large-print books, and my brain makes up really cool stuff when I can't see something--my cousin LOVES telling people about the blue, square cow I saw in a bog on the Cape. Still, it's not that bad. But I know that many people with MS are not so lucky.

I went to the Partners MS Center yesterday which, as the name would imply, only treats people with MS. I get very good care there but I hate sitting in the waiting room. Are the chairs uncomfortable? Is the muzak horrid? Are the magazines old? Nope. It's because I see people with MS there. And many of them have visible disabilities. It's embarrassing, but true.

I wonder about them. How long have they had MS? Has the pretty woman with the purple scarf been in a wheelchair for a long time? Does the man in the denim leisure suit always need a cane? Is the young blond woman's hair thin because she is getting chemo for MS? Do these people have good days? When they look at me, do they remember walking in like me, unassisted and on their own steam? Are they pissed? Are they hopeful? Would they think I'm nuts if they knew that I was choosing not to take disease modifying drugs?

Even though they make me wonder, I STILL leave the Center believing, without a shadow of a doubt, that I am going to continue to be one of the lucky ones. Am I crazy?

Monday, December 12, 2011

No New Lesions...No New Meds!

Today has been an awesome day...although it didn't start out that way.

I discovered late last night that my overdue annual neurology appointment was scheduled for 9:30am today and not 9:30am tomorrow as I remembered. So, I called the MBTA and the reservationist snarkily informed me that "The Ride is not your personal taxi service, Ms. Baker" and that, because I did not provide 24 hours notice, I would be placed on standby.

I've been falling asleep at night listening to Sissy Spacek read To Kill A Mockingbird which means that I have to put my alarm on "buzzer" instead of NPR. This may seem like one of my typical digressions, but it's not. I love listening to the book at night but I hate what feels like a violent assault first thing in the morning. The high-pitched buzz, which is really more like a beep, seems to drill into my inner ear and come back out the other side. And this morning, it was even earlier that usual so I could find out if The Ride had scheduled my trip to the neurologist. No such luck.

I rolled with the punches, got myself and the kids ready for the day, and looked up the fastest route via public transportation on my smartphone. I usually avoid buses. This is slightly embarrassing to admit, but I think it's just that the train somehow seems cooler. I have no idea just does. That having been said, I usually HATE taking the train to my neuro appointment because it takes an hour and a half and it involves the dreaded Green Line filled with overentitled 20-somethings who clump together in front of the doors and don't let anyone in or out of the train. I have actually come close to physically assaulting a woman when she gripped the handrail with her arm extended and wouldn't let anyone pass, although the conductor was screaming into the microphone that he couldn't leave the station until the doors were cleared. I politely said "excuse me" not one, but two times, and then decided to pry her fingers free of the pole. In retrospect, I probably crossed a line.

But I digress. Because Zane leaves for school at 8:30 and I had less than an hour to get to the neurology appointment, I decided to look for a faster route. And I found one! The trolley, the 31 bus, the 39 bus, and a short walk later, and I arrived at the neuro office with 5 minutes to spare and no assault charges waged against me.

When I filled out the usual check in forms, I realized that my plan was foiled to divulge my rebellion against the injectibles after Dr. S. gave me my most recent MRI results. Nevertheless, I completed the form honestly and wrote down the fact that I had stopped taking Copaxone in February. Yup. February.

When I was called in, Dr. S. reviewed my form and, perhaps not reading carefully inquired, "And you're on Copaxone...?"

Before he could check the box on his computer, I said, "No, actually....I stopped taking the Copaxone in February." And then I waited. For the roof to cave in, for the MS police to show up in riot gear and take me away, or, probably my worst fear, for Dr. S. to yell at me and not like me anymore.

But he didn't. He said, "Ok. Let's talk about that."

I think I love him...not just because he wears pastel shirts and would fit nicely under my chin, but because he listens. He is the neurologist I always wanted. He sees himself as a key player on MY MS team. I am the captain and he works for me. He makes recommendations but he ultimately leaves the treatment decision making up to me.

We talked at length about how I gave up gluten to help my Ulcertative Colitis and how I noticed MS symptoms (namely my vision and fatigue) improving.  He was very interested in my experience and told me that he's writing a paper about the link between the gut and MS. He also suggested that, in addition to giving up gluten, I may want to add probiotics into my regiment since they had shown to help UC and MS.

We had the typical clinical neuro tests where I have to follow his finger, walk as fast as I can down the hall, stand on one foot, touch my finger to my nose, etc. We went over my MRIs, image by image, and I learned that I have no new lesions. There was one faint shadow at C4 but it didn't concern him in the least and he thought it might have been because I moved during the scan.

I was beside myself with joy. I vibrated in my chair, grinning from ear to ear. I was prepared to hear that the lesion making machine that is my immune system had gone a little nuts after I quit the Copaxone. I was prepared to be wrong about my decision to go off the meds  So you can imagine how cool it was to have the medical professionals confirm, yet again, that I know my body and that I'm doing a good job listening to it.

Then we talked treatment. He told me about the current MS oral med, Gylena, and how the relapse reduction rate is almost double that of the injectibles. Did I say that right? People have less relapses on the drug. We talked about another oral med still waiting for FDA approval in the US that is currently approved for treating psoriasis in Germany and how it's been found to help people with MS. Dr. S. expects it to be approved in the next year.

Then, I identified three possible choices:  1. Start on another injectible, 2. take Gylena, or 3. continue to do no meds until the other oral med is approved. Dr. S. responded, "Well, choice #1 isn't really a choice, is it? You don't like the injectibles so they're off the table. They don't work for you if you won't take them."

I love him.

We decided....drum roll, please...

I am not going to take any MS meds (other than my Vitamin D and other OTC/vitamin nutritional supplements) for at least six months.  At that time, I will have another MRI series and another appointment to check in on how I'm feeling. If all is still well, then I will continue as I'm going for at least another 6 months.

Barring him telling me that they discovered I no longer have MS, this is the best news ever. Nothing has really changed but now I am compliant, honest, healthy, AND med-free.  As a gesture of gratitude, I donated 9 vials of my clean blood before I left the MS Center. It's rare to have people with MS who don't take meds and they can use it to research the causes of MS. One of the vials was for the CLIMB study that will follow me for 20 years. I told the 20-something office worker that if she still worked on the study in 20 years, she would be able to tell people: "Julie Baker is just as healthy and vibrant today as she was when I did the intake 20 years ago."

Tuesday, November 01, 2011

Out of Hybernation CCSVI Rant

I haven't done a lot of research about CCSVI but I have certainly been inundated with "testimonials" from believers in the MS community. I have to say that this is the first one that seems sane and balanced to me

I'm glad that Montel Williams and others are getting relief from some of their symptoms with this procedure and I'm incredibly grateful that my symptoms are so minor that I would never consider surgery on my jugular least not yet.  However, words like "miracle" and "liberation" scare the crap out of me and set off my bullshit meter.

For me, holistic is the way to go. Eastern medicine, western medicine, nutrition, meditation, yoga...whatever works. And if CCSVI works for you, that's fantastic but PLEASE don't tell everyone that it's the only answer and that they are fools for trying some of the other treatment options.

Let's keep supporting each other in our variety of approaches to living with MS and protecting each other from unscrupulous doctors who give false hope of "miracles" for the right price. Let's keep working/praying for a cure for MS.

Wednesday, May 25, 2011

World MS Day

Did you know that today is World MS Day? To me, this day is about sharing information and, hopefully, changing perceptions about the disease. If you have any questions about MS, drop me a line or write them in the comments section below. I may not know the answer but maybe another blog visitor will! If not, I'm happy to share my experience with you and try to point you to other resources to get more information.