Friday, December 30, 2011

Another Year...

It's hard to believe we're at the end of 2011.  Like many people, I always find myself rather reflective as the new year approaches.  I look back at this year and I think "wow".  It's been a roller coaster ride of highs and lows.  I'm thankful to be ending 2011 on one of the highs.  More importantly, it was a year filled with blessings, even from the most unexpected of places.

I know I sound like a broken record because I've said this many times, but I very firmly believe a person's outlook and the ability to be gracious plays a major part in their overall well-being.  In fact, if I had to pick just one positive MS has brought into my life, it's gratitude.  When people ask me how I seem to keep an optimistic perspective despite some of the craptastic stuff that's been thrown at me, I always respond the same way: I believe that because of MS, I don't take the little things in life for granted that most healthy people do.  Losing some aspects of my life to MS has made me so incredibly grateful for all the good that remains.

As 2011 draws to a close, that is my challenge to you- be grateful.  Take a look at the last year and find reasons to be thankful.  It doesn't have to be huge earth shattering things- even seemingly small things. Even if it's something as simple as discovering a flower that grows wild in your yard, or learning to cook a new dish you really liked.  Make a list of a minimum of 10 things you are grateful for.  You'll be surprised how much comes to mind when you start really thinking about it, and as a result, how good that realization will make you feel inside.

Happy New Year!  Make being grateful a resolution for 2012 :)

Thursday, December 22, 2011

This time, it's all about me.

Well hello!  I know I've been silent for a very long time, however sometimes life gets the best of us.  The truth is, I wasn't sure I'd come back at all.  Life has been so overwhelming, both good and bad, and all of it on an extremely personal level.  The thing is, I don't know how to write superficially.  Anyone who's read my past posts know I share both honestly and from the heart, and because of that I needed time to get my head in order before venturing forward with this blog.  I had a decision to make- let it die, or continue to just be me?

Here I am again after a year's hiatus so I think my decision was obvious.  I'll continue to share my journey despite the discomfort that may come with sharing such personal experiences because maybe, just maybe, sharing my struggles can help someone else.

So what's happened?  A lot.  Have you ever reached an epiphany moment in your life when you just know you have to make some changes?  That is essentially what happened to me.  I took a look both at myself and the people around me and realized it was time for some difficult if not scary changes.  I needed to improve my health drastically, both physically and emotionally.  Sure I have MS, and there isn't a thing anyone can do to change that, but that doesn't mean I can't take control over the aspects of my life I could change.

The first thing I took control of was ending a marriage that should have never taken place to begin with- I filed for divorce.  I won't go into all the sorted details here, but rest assured I am happier and more at peace now that he is out of my life than I have been in years.  As pathetic as this will sound (ok it IS pathetic), I was used from start to finish.  I essentially fell victim to a predator, a man who goes from woman to woman for financial gain so he can sit on his lazy ass and not work.  He is a pathological liar and king of manipulation, and unfortunately he came into my life during a time I was extremely unstable both emotionally and physically, making me easy prey.  One thing he used to say to me as a way to further crush my already low self esteem was "the woman I loved died the day you were diagnosed, you've never been yourself since".  Then one day I realized no, that was so far from true!  In fact, it was just the opposite and I told him "Wrong.  When I met you I was terrified and had no idea what was wrong with me.  Being diagnosed was the first step in finding myself again.  This is ME, the real me, and I'm a strong independent woman.  You just don't like the fact the scared needy girl is finally healed enough to leave".

And with that I filed for divorce, which was final in November. I am now blissfully known by my maiden name again today :)

Divorcing the parasite was only one step towards improving my life and myself.  Really, that was easy part, all I had to do was write a check to the lawyer and show up in court a couple times.  The tough part, the ongoing part, is taking control of my health.  Yeah I have MS and a linty of symptoms that are now part of daily life, but sadly all aspects of my health had slid down the crapper too.  I looked at myself and thought "You're almost 40 years old, where are you going to be at 50?  At 60?".  I didn't like the response because I knew if I continued on the unhealthy path I was on, it wouldn't be good.  It was time for some MAJOR changes.

The first thing I did was quitting smoking.  For any other smokers with MS reading this?  Many studies have come out showing that smoking will speed up the progression of the disease.  If that isn't reason enough to quit (along with cancer, emphysema, COPD, etc) I don't know what is.  It wasn't easy, and quite frankly I'm a little shocked I wasn't a much nastier person to live with while quitting, but I'm very proud to report I haven't had a cigarette in over 6 months.  I never thought I'd say this, but I truly love being a non-smoker.

I was now single, and a non-smoker, so time for the next step: My oral health.  Here is another little known fact to MS'ers- IV steroids can cause bone loss (again, among a long list of other possible side effects).  When I was first diagnosed I was relapsing every 3-5 months and on IV steroids just as often.  That, coupled with other medications and an already scarily low vitamin D level, turned my teeth into a rotting brittle mess.  In about 2 years time, I went from having perfect teeth and beautiful smile to having a mouthful of infection that I was ashamed to let anyone see. I avoided pictures like the plague and was in almost constant pain.  Twice I even relapsed due to tooth infections. It was a huge source of humiliation as much as it was health issues.  I knew I had to address this problem but was terrified- I didn't even want to consider the amount of pain that would be involved in fixing it.  Still, it was the next step in my journey to health, so I mustered up all the courage I could find and did.

I'm happy to report I once again have a smile as beautiful and perfect as the day I got my braces off 22 years ago.  The price to get it?  A day of agony in the dentist chair having 12 teeth pulled.  Yes, I had them all pulled the same day.  I know, I'm a masochist apparently, but I just wanted it done and over before I lost my courage entirely.  My face swelled up like a chipmunk and I even got a black eye, but within 48 hours I actually had far less pain than I did from the infected teeth.  Now, I feel great and am actually adjusting the changes much faster than I had anticipated.  Mission accomplished! :)

The next step?  Lose weight.  Lose LOTS of weight.  I have been a big girl pretty much my entire life, but there is a difference between a healthy big and a dangerous obese.  I, admittedly, am dangerously obese.  The sad reality is, the day may come I can no longer walk and require help with daily life.  None of us with MS want to consider this but it is a possibility for us.  It dawned on me aside from the risks of diabetes, hypertension, and a host of other health issues I was also risking making potential caregivers' lives hell if I remained this weight.  Something had to be done and it had to be done while I was still healthy enough to do it.

On January 6th, I will be having Lap-Band surgery.  I know some will disagree with me on this decision, but to be blunt I don't care.  Like all other aspects of my life and health, I have to do what I believe is best for me.  This, I believe, IS best for me.  I'm actually very excited for this next step and anxious to start the next leg of my journey.  Stay tuned for details as I continue my quest for better health :)

Now you know why I chose the title of this post.  This time, it's all about me.  As I'm sure many out there can relate- that isn't easy.  I'm so used to putting myself and my needs on the back burner to take care of everyone else.  But then I realized that by taking care of myself I'm also better caring for those whom depend on me too.  Sometimes you have to make it "all about you" to truly care for those you love.

Til next time, be well all <3

Tuesday, January 11, 2011

The CCSVI Firestorm

Anyone with MS who's active in any internet community knows CCSVI is a major hot button issue.  There are people strongly for it and just as many strongly against it.  Whichever side of the CCSVI fence you sit on, my hope is that you'll do your homework so that you can make an educated decision on it, not a decision based on media hype.

As I stated in a much earlier post, term CCSVI (Chronic cerebro-spinal venous insufficiency) was coined by Dr. Paolo Zamboni, an Italian vascular surgeon who's wife has Multiple Sclerosis.  His theory was that MS is caused by compromised blood flow in the veins draining the central nervous system.  He further theorized that the malformed blood vessels cause a build up of iron deposits in the brain triggering an autoimmune response, resulting in the degeneration of the myelin sheath protecting the nerves.  He believed if the compromised blood flow could be corrected, then MS could potentially be cured.  Dr. Zamboni tested this theory on his wife, and claimed success.  Upon conducting this new procedure on other MS patients, Dr. Zamboni and colleagues reported that CCSVI existed in 90% of MS patients.  And thus, the firestorm was ignited.

It is widely accepted that Multiple Sclerosis is an autoimmune disease, not a vascular disease triggering an autoimmune response.  This alone resulted in much skepticism from the medical community at large.  However, do to the outcry of MS patients worldwide and intense media pressure, studies began to try to duplicate and validate Dr. Zamboni's findings, and the National Multiple Sclerosis Society even donated 2.4 million dollars towards the research.

No sooner had the studies began, medical tourism groups sprang up everywhere, cashing in on MS patients who are desperate for relief from their symptoms.  Then, preliminary reports came in, but rather than validating the CCSVI theory, they only brought more doubt.

Quoting from The American Association of Neurology, dated October 7th 2010:

"A controversial new theory on the etiopathology of multiple sclerosis (MS), which suggests that reduced blood flow in the azygotic and internal jugular vein — chronic cerebrospinal venous insufficiency (CCSVI) — may be at the root of the disease, has been called into question by two new papers published in the August Annals of Neurology."

To put the rest of the article into layman's terms, two separate studies, one in Germany and the other in Sweden, failed to replicate Dr. Zamboni's results.  The German study included 56 patients with MS and 20 controls (people without MS).  In all but one of the patients and controls, blood flow was found to be normal and no stenosis (clogging of the vein) was found.  Interestingly, the only difference the German study found between the MS patients and the controls was that the MS patients had a higher BVF (blood volume flow) in the upright position.  They theorized this difference in BVF could represent vascular dysregulation, possibly due to the effects of MS on the autonomic nervous system.  However, MS patients having a higher BVF not only failed to validate Dr. Zamboni's theory but contradicted it entirely.  The authors of the study said “If anything, however, higher BVF in patients should suggest a better than normal cerebral venous drainage (at least in an upright position) in MS”  The Swedish study had similar findings.  Using 21 MS patients and 20 controls, they found normal results and no stenosis in any of the patients or the controls.  If the firestorm wasn't already raging, these findings threw gasoline on it.  The pro CCSVI camp came out criticizing the methods used in the studies, and the medical community at large only grew more skeptical.

Then, causing further upset to the CCSVI supporters, Dr. Zamboni himself publicly announced "Surgery is not recommended at this stage", supporting an earlier statement he'd made stating that people should not have the CCSVI procedure done outside of clinical trials and that MS patients who do have it done should not stop using their disease modifying drugs.  He also clearly stated he does not support medical tourism.

Despite all this, reports of deaths as a result of CCSVI in the news, and many patients who've had the CCSVI procedure reporting "restenosis" and a return of their MS symptoms, people still continue to use medical tourism in droves to have this procedure done.  Likewise, the pro CCSVI camp has gotten more vocal than ever, taking over MS message boards in armies and enlisting media support to promote and sell CCSVI.

These are the facts.  Not my opinion, not my or anyone else's theory, but the facts.

As for my own opinion?  I believe there is much money to made in medical tourism and CCSVI and people are cashing in on under-educated MS patients desperate for relief.  I've seen them in droves, using multiple fake identities to spam message boards, targeting the newly diagnosed and the under informed with false promises of "a cure".  I've seen the the tons of homemade YouTube videos showing before and after CCSVI, with MS patients claiming to be greatly improved if not symptom free.  People, it's YouTube.  I could make a homemade video that makes me look like an oompa loompa but it doesn't make that true either.  

I am not saying no one has been helped by CCSVI, I'm sure some are legit and have.  But, I also know a huge number have their symptoms return and even have the procedure repeated, further risking their own lives by weakening the delicate veins in question.  Because this is mostly done "under the table" or via medical tourism, there's little to no recourse when something does go wrong.  Worse, there seems to be little ethics by the doctors performing this procedure when it fattens their wallets.

Quite frankly, I am angry and frustrated.  People howl "We want CCSVI treatment now!".  There are clinical trials underway at this very moment, to either prove or disprove Dr. Zamboni's theory.  Clinical trials take time.  It's a fact.  But, clinical trials exist for our own safety.  Everyone has the right to make their decisions for their health, but I have a serious problem with people "selling" an unproven theory as a legitimate treatment for MS.  In my opinion, it's completely unethical and misleading.  When Dr. Zamboni himself says surgery is not recommended, that the CCSVI procedure should not be done outside of clinical trials, and that he is against medical tourism- what gives these people the right to intentionally 'sell' CCSVI to MS patients anyway?  Do these people claim to know more than Dr. Zamboni?  It's obvious to me, the CCSVI spammers do not have MS patients' best interest at heart but rather their own wallets.  It's very, very sad.

People, I URGE you to do your homework.  Take control of your own health through education.  Be it CCSVI, stem cells, or any other potential treatment for MS you need to know the facts so you can make an educated decision.  Don't rely on others to inform you- inform yourself.  I know none of us want to have this crap disease, myself included.  But hope alone does not turn a theory into fact.  We must act based on logic and facts, not emotions and dreams, no matter how difficult and even disheartening as that may be.

Until next time, be well :)