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.
Mis

Saturday, March 17, 2012

CCSVI and MS

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 :)
Mis

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 :)
-Mis

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
Mis

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 :)

Mis