Tuesday, October 22, 2013

Five Years with Multiple Sclerosis

It's almost surreal to think five years ago today I started this blog.  It was also the day I was diagnosed with Multiple Sclerosis.  As poor as my memory is these days, October 22, 2008 is a date I will never forget.

We have a lot of meaningful dates and anniversaries in life.  The anniversary of a relationship, or a birthday, or even the date we start working at a company.  Not all anniversaries are good, such as the anniversary of a loved one's death.  So, what about the anniversary of being diagnosed with an incurable disease?  Surprisingly, I consider the day I was diagnosed with MS a good anniversary.

It's important to realize I had MS for years before I was actually diagnosed.  They know I've had it since at least 2005 if not longer.  I strongly suspect it became active after the birth of my son in 2002.  Before I was diagnosed, I spent years "sick".  I lost my job, I lost my house, and I even lost my car.  I was forced to live in a horrible ghetto apartment with my two young children and try to function despite feeling like an emotional and physical wreck.  I spent years with doctors, family, and friends accusing me of "faking it" or that my illness "was all in my head".  Essentially, most people around me thought I was a lazy hypochondriac with developing psychological issues.  To put it bluntly- I was in hell.

Then in October 2008, I woke up one morning and was unable to see.  I had complete double vision, and if you've never experienced this before, with both eyes open you may as well be blind.  I stumbled into the living room and closed my eyes, thinking maybe if I just gave it a moment it would go away.  No luck.  Starting to feel panicked, I woke my then husband and said "I need you to drive the kids to school today and then I need you to take me to the ER.  I can't see".

At the ER, they assumed I'd had a stroke.  They did a CT scan, x-rays, blood work, and a battery of neurological tests.  All the tests came back negative and I was essentially released with a shoulder shrug and told to see an Ophthalmologist.  That same night, I saw one and he did a thorough examination of my eyes.  He found that nothing was physically wrong with my eyes but my optic nerves were inflamed and asked "Have you ever been tested for MS?"  I didn't even know what MS was but he advised I schedule an MRI to be tested for it immediately.

That night I went home and Googled MS and learned it stood for Multiple Sclerosis.  As I sat and read about this disease, I felt my heart sink.  I read for hours before finally getting up and going to my then husband in tears saying "Oh my God, this is what's been wrong with me for all these years.  I have Multiple Sclerosis".

Later that week, I got my very first MRI.  The week after, I was diagnosed with MS.

Why do I see the anniversary of my MS diagnosis as a good thing?  Because the enemy I was battling finally had a name.  After years of being sick and miserable, I knew what was wrong with me and I knew how to best fight it.  I was no longer the unstable, lazy hypochondriac and there was a sense of satisfaction in being able to say to the critics "You were right, it is all in my head.  I have lesions all over my brain".  Being diagnosed with Multiple Sclerosis was the first (necessary) step in regaining control of my life and health.

In the five years since my diagnosis anniversary my life has changed drastically.  I divorced the parasite I was married to back then (thank God!), I quit smoking, I bought a house, I lost over 230 pounds, and even found love with a wonderful man.  Do I still struggle?  Of course I do!  But I choose not to focus on what I can't do and rather focus on all the immense blessings in my life.  Blessings I wouldn't have I wasn't diagnosed with MS and given the tools I needed to fight the MonSter inside of me.

So, Happy Diagnosis Anniversary to me!!

Be well :)

Monday, October 14, 2013

Per your requests...

Since my last post, I've received a number of private messages and most were asking why I haven't posted any pictures of my weight loss.  So, I'm going to address that now.

The reason I haven't posted any pictures is twofold.  The first reason is out of concern for my privacy and the second is out of humiliation.  Yes, that's right, humiliation.  Even though I'm over 230 pounds smaller and less than half my original size, it's still incredibly humiliating to admit I was ever that gigantic.  I look at my "before" pictures and I still cringe.  I ask myself... how the hell did you ever let yourself get that huge?  Honestly, it's almost like looking at a bad movie of another life when I remember the way I used to be.  A life I'm more than happy to leave behind.

So, I have a compromise.  I'm posting my "before & after" pictures but I'm not including my face.  I figure this way it allows me to retain my privacy while still showing the weight loss.  As for the humiliation?  Yeah, it's still embarrassing, but I at least take comfort in knowing I'm not that miserable fat girl anymore.

The picture on the left was taken in January 2012 and the picture on the right was taken October 2013.  There is an over 230 pound difference between the two pictures taken 21 months apart.

Until next time... :)

Be well all!

Sunday, September 22, 2013

Bitter Sweet

I know, I'm the biggest slacker ever when it comes to this blog! I hope everyone has been doing well over the last year.  My year has been bitter sweet.  First, the sweet: The kids and I are still very happy in our new home. I've been seeing a wonderful man for over a year now, too.  I've lost a lot of weight- about 230 pounds total. Needless to say, the weight loss has been very dramatic.   People who haven't seen me over the last two years don't even recognize me. I'm told I look a lot younger.  It's still almost surreal for me. I catch my reflection in the mirror and do a double take because I can't believe it's really me.  Being as I had been in plus sized clothes since I was about 16 years old, to be able to shop in "normal" sized stores now is nothing less amazing(and addicting).  Who'd have ever thought the girl who started out in a 7X would now be trying on size Large shirts to find them too big and need to buy a size Medium?  Unreal.

The bitter?  It was a REALLY rough spring.  In April, I had to have my gallbladder removed.   No surprise there being as it's very common after massive weight loss. When at my post operative appointment, my surgeon commented that it was time to remove all the excess skin from weight loss and finally fix my hernias once and for all.  So we scheduled the surgery for three weeks later- and then my beloved grandma died the week before the surgery was scheduled. It was extremely hard but we knew it was coming.  Thankfully, my mom and I were able to be at her side as she took her last breath and comfort her as she passed.  A week after my grandma's funeral I had over twelve pounds of skin removed, my hernia fixed, and came home with about seventy staples from hip to hip and two drains.  The recovery was nothing less than brutal and resulted in a pretty severe MS exacerbation, too.

A couple weeks after surgery, I noticed my legs were swelling considerably.   At first everyone just thought it was from surgery but soon it became apparent it was something more.  While all this was going on, my uncle died unexpectedly from an embolism (blood clot) after abdominal surgery for Pancreatic Cancer. He died almost a month to the day after my grandma (his mom) died.   By the time of his funeral, the swelling and pain in my legs had become very bad.  A week later, I ended up in the ER because I couldn't even walk to the bathroom without tears.  Turns out I had bilateral DVT's- blood clots in both legs.  They were very severe, reaching from both my knees up into my abdomen.   Needless to say, considering we just buried my uncle the week before for an embolism everyone freaked out.

I was told there as a scarily high chance these blood clots could kill me because of their severity so I was immediately sent a hospital about 70 miles away via ambulance.  I spent eight days in the ICU receiving a treatment for life threatening blood clots called tPA- Tissue plasminogen activator.   I have to be honest, that was the scariest and most painful experience of my life, not to mention emotionally draining.  Being that far from home and unable to see my kids was awful but knowing there was a chance I would never make it home again to them was terrifying.  Thankfully, either my mom or boyfriend were there with me daily so I wouldn't have to go it alone.  The doctors essentially thread catheters in behind both my knees and immobilized me for almost five days while they pumped in the tPA to dissolve the blood clots.   During that time, I was bleeding out pretty much everywhere.   I had gigantic hematomas (massive bruising) all over my body and needed six blood transfusions.  I also had angioplasty to remove the small pieces of clot not dissolved and four stents put in to keep the veins wide and flowing.  But, it worked.  The clots were completely gone and I was released from the hospital the day of my daughter's graduation.  I looked like walking hell from a torture chamber but I was there and able to see my beautiful daughter graduate from high school.

Fast forward three months later to today- life is finally back to normal.   I still have to take blood thinners daily and will until at least Christmas but there are no signs of blood clots or narrowing of the veins.  My boyfriend and children are extremely relieved that whole ordeal is finally behind us.  I've spent the summer enjoying my family and being thankful that God allowed me to heal and remain on the Earth with my loved ones.  So, that is where I've been.  Hopefully I'll find more time to post again now that life is finally normalized and good again :)

Be well!

Friday, July 13, 2012

MS and Overall Health

Yes, I have been away awhile, but for good reason.  I bought a house for the kids and I this spring so I've been spending lots of time getting everything just how we want it.  I've also been learning how to do simple home projects and the fine art of lawn care.  Ok I kinda suck at lawn care, but hey, at least I'm trying!

Simply put, I've been busy living and enjoying my life.  This is easily the happiest I've ever been in my adult life.  My life is parasite idiot free (yay for divorce!), my kids are thriving and happy, we have a beautiful home we love, and my health is doing better than it has in years.  I mean, really, what more could I possibly want or need?

Speaking of my health, that alone has been a journey in itself.  It's pretty shocking when I look back at far I've come over the past year.  A year ago I was a smoker, grossly obese, and living on a diet of junk and fat.  Not to mention, of course, there's the ongoing battle with MS.  In a nutshell, I was scarily unhealthy and pretty darn miserable.  I am convinced if I had stayed on the same path I was on, I would've been exceptionally lucky to even make it to 50 years old.  That was unacceptable, so I decided to make drastic changes.

Today, I am a non smoker and have been for a year, my diet is healthy high protein and low fat, and I am almost 120 pounds lighter.  It hasn't been easy but it has been so incredibly worth it.  My greatest prayer is that with all these changes to improve my health I will be here long enough to spoil my great grandchildren someday.

Here is the most interesting part of all this.  We all know things like weight and diet can't change or cure Multiple Sclerosis.  But, what I have discovered on my journey to health is how much overall health truly does effect MS.  I still have symptoms all the time.  I still get dizzy many times throughout the day.  My eyes still act up sometimes.  I have weird random pains.  My cognitive function still seriously suffers at time.  MS is still constant part of my life, but the healthier I get, the more manageable some aspects of the MS also gets.  For instance, my walking ability and speed have improved dramatically.  I have gone from being unable to walk from handicapped parking space to the front door of a store to being able to walk the mall many times over while taking my daughter shopping.  I still have heat intolerance, but that threshold has raised a good ten degrees, allowing me to enjoy more outdoor activities like spending days by the pool with my son.  Overall, despite the MS, I feel better than I have in at least a decade.

The way I see it is this:  I can't cure the MS but I can take control of my health and make the rest of me as healthy as I possibly can.  Having MS is bad enough, don't you think?  I mean, it downright sucks!  So why in the world would I want to continue to neglect my overall health and end up with other preventable illnesses to go along with it?  Heart disease?  High blood pressure?  Diabetes?  High cholesterol?  Not to mention studies have proven that smoking makes MS progress faster.

Obviously, I don't need any more to deal with than the MS.  None of us do.  I know it's not easy to do things like quit smoking or giving up fatty comfort food, but if you are reading this and have MS, I am here to tell you taking care of your overall health is absolute best thing you can do for yourself.  We need all the power we can get to fight this horrible disease, and that power comes from a healthy body and lifestyle.  We owe it to ourselves to give ourselves the best chance we can to beat this crap disease.

Be good to yourself.

Saturday, March 17, 2012


On the heels of MS Awareness Week, I feel it's necessary to revisit a topic that always brings a heated debated:  CCSVI and MS.  For those few who aren't aware of this, I will refer you back to my post on January 11, 2011.  It explains what CCSVI is in detail.

Today, I saw yet another post on Facebook claiming that CCSVI saved them from their MS symptoms.  This debate has been going on a couple years now, and while it has died down considerably, there are still those out there either clinging to a last hope or trying to make a buck where CCSVI is concerned.  There are hundreds of studies and articles out there on this topic, I'm just going to a cite a few here:

Chronic Cerebrospinal Venous Insufficiency and Multiple Sclerosis
Are Narrow Blood Vessels to Blame in MS?
Fissures in Zamboni's MS Theory Widen
Notice on CCSVI from Alberta Health Services

No one, not a single scientist or doctor, has been able to duplicate Zamboni's original 2009 findings.  What does this mean?  It means his claims of CCSVI in MS can't be substantiated.  Sadly, now that enough time has passed if you look around the message boards you can find case after case of MS patients paying tens of thousands to medical tourism for a "treatment", only to end up worse off than they were before.  You can also find cases of patients who went abroad for CCSVI and have lost their life because of it.

And yet despite this, the CCSVI prophets are still quick to yell and scream the benefits of it.  Why is this?  A couple reasons:  A large number of them are being paid to recruit MS patients.  Medical tourism is multi-million dollar industry and there is much money to be made off desperation and ignorance.  Speaking of desperation, a lot of that runs rampant with MS patients as well.  It's an incurable disease and so many out there are holding onto any shred of hope they can find- even if it's false hope.  Then, there is the biggest reason the CCSVI storm has taken hold- social media.  Social media like Facebook, Twitter, and blogs are incredibly powerful.  Look at the uprising of Egypt that led to overthrowing the government, that was orchestrated almost entirely by social media.  That's why the Egyptian government kept trying to shut down internet in the country.  The CCSVI people know this and use it to their full advantage.  They even give tips and instructions to others selling CCSVI propaganda on how to utilize social media in their favor- and that is exactly how they've gotten and maintained their strong hold within the MS community.  They may not have facts in their favor to support their argument, but they sure do have a lot of homemade YouTube videos and "testimonials" from people claiming to have been cured.

For those that are STILL insisting CCSVI helps, let me paint a picture for you.  Just for fun, let's say CCSVI does in fact exist (despite the fact as of now, they can't even prove that much).  If it does exist, then it is it's own health issue totally independent of MS.  Now, if you do have health issues separate from MS, even though they're totally unrelated biologically they still can effect each other.  Here's an example from my own life:  I quit smoking 10 months ago and have lost almost 60 pounds in the last couple months.  Since these changes that effectively corrected other health issues unrelated to MS, I feel better than I have in years.  I can walk further and faster, my balance is better, I have far less leg pain and spasms, and I don't have nearly as much fatigue as I once did.  My symptoms have been reduced greatly by losing weight.  So, by CCSVI standards, that would mean losing weight is a treatment for MS.  I mean, I feel great since losing all that weight!  Heck, I could even make a YouTube video showing how fabulous I am doing these days as proof!  Losing weight should be an official, government funded and recognized, treatment for MS and I am the proof.

((wipes the sarcasm from her chin))

Weight loss isn't a treatment for MS anymore than CCSVI is, and my blog stating how great I feel isn't anymore proof than a homemade YouTube video.  Propaganda and personal claims will never replace the need and validity of actual scientific fact.  Educate yourself to the facts.  While hope is a great thing- God knows I have tons- it should never replace common sense and rationale thinking.

Be well all :)

Friday, February 10, 2012

"I have MS, too"

I went to my surgeon today for a follow-up check as well as my first fill. (I've now lost 44 pounds total, yay!)  While in the waiting room, I got to talking to a couple other women who were also waiting.  We compared notes, traded food ideas, and even chuckled at some of mistakes we've made.  In the midst of the conversation, a very friendly woman in a wheelchair added "Being in this chair makes it harder, though.  I have MS"

I immediately turned and looked at her.  I know that there are millions of us with MS worldwide, and I'd be willing to bet there's likely just as many (if not more) Lap-Band patients out there.  But for someone reason, I was truly shocked to find myself sitting in my surgeon's office only to find the woman next me was also both  banded and had MS.  I smiled at her as I then replied "small world... I have MS, too".

Of course at that point her and I started trading as many MS stories as we were Lap-Band stories just a few moments before.  She told me how she could stand, even take a few steps, but spent most of her time in the wheelchair due to weakness.  We discussed being dizzy and weird phantom sensations that keep us awake at night, as well as how we both hoped losing weight would help better combat the MS.  After a slight pause in the conversation, she noted I wasn't in a wheelchair or using any walking aids.  I said that was true and I was thankful for it but added I did have to use my cane some days when my balance is particularly bad.  That is when things took a slight turn, at least in my own mind they did.  The woman mentioned being secondary progressive and I responded that I was still relapse/remitting.  At that point, she looked at me with a faint chuckle as she said "I don't have the luxury of being relapse/remitting"

Ouch.  I am still not even entirely sure why that stung, but it did.  My mind started wandering silently as I considered this unexpected remark and then I started to feel anxious.  I smiled politely as I replied "well I am thankful for it, that's for sure".  It was about that time her ride came, we said our good-byes, and she left.  However just because she left doesn't mean I stopped thinking about it.

I couldn't figure out why I was feeling so anxious, possibly even agitated.  I really had no reason to, yet there I sat, fidgeting and feeling very uneasy.  I considered the closing remark the woman made about not having the luxury of being relapse/remitting...and then it hit me.  I was feeling so anxious because speaking to her was forcing me to face one of my biggest fears- turning secondary progressive and losing considerably more than I already have to this crappy disease.  Her comment suddenly made sense, because as much as I looked at her with fear and dread, I'm sure she was looking at me with envy and longing.  Neither one of us were right or wrong, just both processing our emotions.  She was missing her past while I was trying to avoid my future.

It's funny, really.  I believe life is one huge learning experience and sometimes God will lead people into our lives to teach us a lesson.  I believe today the lady from the surgeon's office and I were each other's lesson.  I know what I must do now- I need to let go of my fear of the future and simply be thankful for today.  I can only hope she was able to see her lesson in our meeting, too.

Be well all :)

Tuesday, February 7, 2012

The Importance of Vitamin D

Back in 2009, my neurologist put me on 5000IU's of vitamin D a day.  When I told people how much I was taking, most either looked at me like I was nuts (including other doctors) or questioned the safety of taking such a dose.  I was lucky, my neurologist was also a researcher and on top of the latest info, so when he told me to take the high dose of vitamin D daily I didn't hesitate to do so.

Fast forward three years:  I'm sitting in the waiting room of my primary care physician, watching the TV showing varies public service announcements and health tips to pass the time.  I was pleasantly surprised when a segment about vitamin D came on and the announcer included "to help prevent the autoimmune disease, Multiple Sclerosis".

Main stream medicine has finally caught onto what my neurologist realized three years ago- vitamin D (or lack thereof) plays a key role in the development and progression of MS.  Here's just a few interesting studies to have a look at:

High Doses of Vitamin D Cut MS Relapses
Vitamin D and Multiple Sclerosis
Rare Gene Links Vitamin D and Multiple Sclerosis
Vitamin D could reduce risk of childhood MS and progression of disease

I could continue posting many more links but I think you get my point.  Vitamin D plays a role in not only the development of MS but the course in which the disease takes.  I changed from Copaxone to Rebif around the same time my doctor started me on 5000IU's of vitamin D daily.  Prior to that, I was relapsing and ending up on IV Steroids every 3-5 months.  Since then, I've only been on IV Steroids twice, the most recent time being  over 18 months ago.  I have often said I suspected my increased disease stability wasn't due to switching to Rebif, but rather religiously taking my vitamin D every morning.  As more and more research is done and studies are released, I believe that to be true more than ever.

If you haven't had your vitamin D levels tested, do so.  Talk to your doctor and decide what the best dose of vitamin D is for you to take daily.  If you have children, get them on a multivitamin with 100% of the daily allowance of vitamin D.  It's such a small step but it could make a huge difference in the health of both you and children.

Until next time, be well

Saturday, January 14, 2012

Banded with MS

I am now officially 8 days post operative.  Yes, I am the proud owner of a Lap-Band.  I feel great at the moment and have zero pain.  Between the pre-surgical diet and my week post op, I've already lost 30 pounds.  It was pretty funny, actually.  When my doc weighed me yesterday, he kept rechecking his notes and the scale going "How you lose this much in a month?".  I just laughed and replied "because I'm very committed to this".  At that point he insisted on checking me for signs of dehydration and malnutrition- but of course found none.  I assured him I am only doing exactly as I'm told, nothing more nothing less.  He then joked that if I continued on this path, they should make me their new spokesperson.

I am feeling pretty good and very optimistic.  However, I would be doing a grave injustice if I didn't include the rough spots I had to get through to reach this point.

The surgery itself went very smoothly.  Upon waking in the recovery room, I was immediately struck by the intense pressure and pain across my rib cage and abdomen.  I was fortunate to have an absolute angel of a recovery room nurse, named Sue.  She assured me it was most likely because of all the air they pump into the abdominal cavity during surgery, however to be safe, she did an EKG just to make sure it wasn't my heart.  The EKG came back perfectly fine and she proceeded to pump me full of pain meds.  The meds helped some, but as soon as I was coherent enough to really think about it, I realized this pain and pressure was more than the air pressure.  I was pretty sure I was also having the MS Hug.

Before even getting out of recovery, I was up walking myself to the bathroom.  Because of the pain and pressure breathing was very difficult, but thankfully, the incisions themselves (I have five of them, no stitches) didn't really hurt at all.  It turns out the hospital was rather packed last Friday, so I spent many hours in recovery while they waited for a room to open.  Funny thing is- I didn't mind at all.  As I mentioned already, Sue was absolute sweetheart, and I was perfectly content under her care.  She even drug a recliner into the tiny recover bay so I could sit up comfortably to help relieve some of the pressure and pain.  It always does my heart good when I find those in the medical profession with such kindness and compassion, as Sue had with me.

So I finally get to my room, only to discover I have a roommate.  Not just a roommate, but a very whiny roommate with a totally berated husband whom she bickered and bitched at constantly.  I knew almost immediately this wasn't going to be good and requested the shift nurse completely close the curtains surrounding my bed.  I am very thankful that due to the amount of Dilaudid they were pumping into me, I was able to sleep despite having to listen to dumb and dumber on the other side of the curtain.

Of course, it's a hospital, who actually rests in a hospital?  I say that sarcastically but at the same time truthfully.  Hospitals are a horrible place to rest!! If the constant commotion and noise isn't enough, without fail a nurse is sure to come wake you every 2 hours to take blood or vitals, and they don't care if you're asleep.  By 3am, I was more than a little cranky and very ready to get home into my own bed.

Early on when I got to my room, I told the nurse the pain I was experiencing was more than the surgery.  I explained I had Multiple Sclerosis and was experiencing the MS Hug, also known as girdle banding.  She looked at me a little blankly then offered more pain killers.  I politely declined and informed her I needed a muscle relaxer to make it stop, preferably a large dose of Baclofen or even a small dose of Valium,  She informed me "those drugs aren't ordered for your surgery".  I then reiterated the fact this had nothing to do with the surgery and everything to do with the surgery seemed to have angered the MS, and it was the MS that needed attention not my post surgical wounds.

I got nowhere and fast.  The next shift nurse came on, and I got the same blank stares and slightly clueless responses.  Between the roommate, the inability to sleep more than 2 hours without being woken, and the fact no one was "getting" the fact I needed an MS symptom treated I was getting frustrated to the point of downright snarkiness.  Yes, I know, I'm not proud, but it was just all going beyond my tolerance threshold.  With perfectly crappy timing, the roomie from hell piped up after the second nurse left "You have MS?  Does that mean you're going to die?"

{cue seriously annoyed look and try to resit the urge to lob random objects over the curtain at her}

I was far too tired and too uncomfortable to deal with her, so I simply replied "No, it means I have an incurable disease that might make life difficult but won't kill me.  However, if someone on this hospital staff doesn't get their head out of their ass and give me a damn Valium, I may kill one of them".

{cue blissful silence from the other side of the curtain}

Yeah I know, I'm horrible, but it shut her up didn't it?  (laughs!)

Just at the point I was sure I was going to lose it, the next shift nurse walked in.  She could tell I was very uncomfortable and offered more pain meds.  I once again stated my case (though I wasn't exactly cheerful anymore about it) and waited for the same useless responses I'd gotten from the last two.  Imagine my shock when instead she looked at my chart, then looked at me with concern "You have MS?  Tell me what you need to make the Hug go away".

I swear to you, I could hear little angles singing the Hallelujah chorus in my head.  Finally, someone was actually listening to me!  I simply replied "Valium, it'll stop the spasms".  She smiled softly and rushed off to call my surgeon.  She must've seen on my chart I'd been complaining about this all night and told him, because she came back very quickly with a Valium and said "here you go, I'm very sorry you had to wait so long for something so simple.  I know your doctor will be in to see you early this morning".

... and within a half hour of taking the Valium, the MS Hug was gone.

I thanked the nurse profusely, and when my doctor came in that morning, he apologized repeatedly that my issue wasn't treated sooner.  Mind you, I still had considerable discomfort from all the air they had pumped into my abdominal cavity, but at least the MS Hug had finally relented.

I went home later that day and proceeded to spend most of the next 48 hours in bed.  Even drinking a mere 8 ounces of water was extremely difficult.  I felt so bloated and still hurt to even breath.  I worried about dehydration and started to have second thoughts, but the 3rd day the pain and discomfort finally started to ease.  By Wednesday of this week, I was feeling great and not in any pain at all.  Oh and if anyone reading this having laproscopic surgery on the abdomen?  Be prepared for this nasty side effect and be sure to walk as much as you can tolerate.  You can't "pass" or burp that air out because it's not in your digestive system, it's in your abdominal cavity.  It has to be reabsorbed by the body and walking is really the only thing that seems to speed that process along.

So, that brings me to now.  30 pounds down, still on a diet of only liquids, but feeling surprisingly good.  Here is my little piece of advice to any other MS'ers that are facing a hospital stay unrelated to the MS: In advance, be sure to make the staff aware and understand the necessity to treat any MS symptoms that arise separately from the reason you're being hospitalized.  A lesson I learned the hard way.

Until next time, be well all :)


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 :)

Friday, December 17, 2010

Painless Disease? Definitely Not!

It never ceases to amaze me when I hear of an MS patient being told by their doctor "Oh Multiple Sclerosis is a painless disease".  Two or three decades ago, it was a commonly accepted belief within the medical community that MS is a painless disease.  Of course, I'm sure anyone with MS back in those times would strongly disagree.  These days it's a proven fact that Multiple Sclerosis can be an extremely painful disease, and it blows my mind that there still Neurologists out there so out of date on their MS facts that they discredit their patients pain by telling them Multiple Sclerosis "shouldn't hurt".

On a personal level, I've been struggling with nerve pain in my face pretty severely for the last two weeks.  It's bad enough that I spent most of last night up in tears, popping every pill I could find that could possibly help, praying that the stabbing pain migrating around the right side of my face would stop. I was within seconds of reaching the point of "too much" and going to the ER when the pain finally started to slowly subside.  Needless to say, I had a long exhausting night.  

Dr. Francois Bethoux, of the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic, did a study specifically on the pain experienced by MS patients.  "In a national survey of more than 7,000 MS patients, 70% of them had experienced some kind of pain, and at least 50% were experiencing some kind of pain at the time of the survey," Bethoux says.  That's a staggering number for disease once believed to be painless.

So what makes MS pain different from other pain?  For one, it has no rhyme or reason.  "It's often more diffuse, affecting several areas of the body at a time. It often changes over time, getting worse or better for no apparent reason. It tends to fluctuate a lot," says Bethoux. "People often find it hard to describe: It's sometimes described as like a toothache, other times like a burning pain, and sometimes as a very intense sensation of pressure. It's very distressing for patients because they have a hard time explaining what their pain experience is."

Multiple Sclerosis pain can be confusing for doctors and patients alike.  It's very hard to treat when the source of the pain is a malfunctioning nervous system rather than injury.   Bethoux describes it as "an illusion created by the nervous system." Normally, he explains, the nervous system sends pain signals as a warning phenomenon when something harmful happens to the body. "It's a natural defense mechanism telling us to avoid what's causing the pain," he says. "But in MS, the nerves are too active and they send pain signals with no good reason - they're firing a pain message when they shouldn't be."

The pain suffered by MS patients is typically categorized as the following:

Acute pain.  Acute pain tends to come on suddenly and go away just as suddenly, but can be extremely intense.  It's often described as burning, itching, shooting or radiating, stabbing, or tingling.  Acute pain can occur anywhere on the body at any given time.

Trigeminal neuralgia is a form of acute pain that effects the nerves in the face.  It's a stabbing, debilitating pain that can be brought on by chewing, brushing your teeth, touch, yawning, sneezing, or even something as simple as a gust of wind brushing across your face.  Many MS patients have had teeth pulled needlessly because Trigerminal neuralgia is often confused with dental pain.  The nickname doctors have given to Trigeminal neuralgia is "suicide pain" because of it's intensity, landing people in the hospital desperate for relief.

Lhermitte's sign is a brief pain that is best described as a stabbing or electrical sensation that races down the spine (and sometimes radiating into the limbs) brought on by bending the neck forward.  It's caused by a lesion on the cervical spine, and while other diseases can cause Lhermitte's sign, it's common in MS patients and often seen as a tell-tale sign of MS by doctors.

Girdle band pain, commonly known as "The MS Hug", is caused by the tiny muscles between each rib going into spasms.  It's called the 'hug' because of the tight, squeezing sensation it causes as the muscles spasm and tighten.  This can occur as high as the chest and as low as the waist.  It varies from person to person and is described as a tight, crushing, stabbing, sharp, dull, or even tingling sensation.  Because it tends to 'wrap' around the torso, and can make breathing painful or difficult, it's often mistaken for a heart attack or panic attack when it's severe.

Chronic pain, defined as such for lasting longer than a month.  This includes muscle spasticity, a common problem for MS patients.  Spasticity can lead to muscle cramps, tight and achy joints, back pain, and musculoskeletal pain

As you can see, the pain experienced by those of us with Multiple Sclerosis is very real, varying greatly not only from person to person but from day to day.  If you're an MS'er suffering from pain, talk to your doctor because there are things available to help bring you relief including medication, physical therapy, and even massage.  If your doctor tries to tell you MS is a painless disease?  Tell him perhaps he needs his brain examined even more than you do. ;)

Until next time, may you all have a pain free day!