Friday, December 9, 2011

Reminsicing on my Beautiful and MonStrous Life.....

I was listening to Mat Kearney's Closer to Love and the part that says "and don't apologize for all the tears you've cried, you've been way too strong now for all your life" really hit home today.  Made me remember not just what I've dealt with in the past few years with my health, but mostly my life before the MonSter.  I remembered growing up as a child in Lima, Peru and how hard it was to be around all the crime and violence, all the family feuds and how hard it was to leave everything and everyone we loved to try for a brand new life in's a story worth telling.

I grew up in Peru in the 80's, when the terrorist group Shining Path was running rampant.  It was a scary and dizzying time, from losing electricity all the time from the terrorists blowing up electric towers among many other bombings, to the constant threat to our lives.  See my family in Peru is what you would call "well off", my Grandfather built a bread business that later became a bread empire, so the Reyes family was high profile.   That meant that we were targets for kidnapping attempts to the family.  There were 2 real kidnapping attempts on 2 of my uncles, that were luckily unsuccessful (2 very interesting stories in their own right, but I'm not writing a book here! lol), which prompted my Grandpa to get bodyguards for the whole family, including us kids. We were taken out of school for 3 months until the real threat passed and when we were finally able to go back, we had to get driven to school in a van with armed bodyguards, then had to get walked in to school with bodyguards flashing their big guns, as to thwart any attempts.  Again scary, but having bodyguards became the norm.  If we even wanted to go out to eat somewhere we'd get followed by our bodyguards to be safe.  As if all these threats and precautions wouldn't have been reason enough to make me wildly aware of my mortality at a young age, I had the misfortune of witnessing a man get shot to death in front of my grandfather's bakery during a robbery.  I was 6.  I couldn't speak for a few hours from the shock, and although I was young, I will NEVER be able to get that image out of my mind.  I was also unlucky enough to witness my Mom getting pistol whipped and beaten as 2 men tried to steal our car, as well as them shooting at my brother and I before they got away with our car.  It was truly one of those Arnold movie moments (you know like the parts where he screams "get down" with his bad Austrian accent), as our teacher threw us down to keep us from being shot.  These were a few of the horrible things I had to live through in my short life in Peru, but even as I write this it seems like I'm talking about someone else's life.

Of course, as in the wise words of P-Diddy "Mo' Money Mo' Problems", there were plenty a family feud to be had, and along with the threats to our lives, it lead us to make the difficult decision of having to leave everyone and everything we loved to go out on our own to America. It was a conscious, keep your money it's not worth all this crap, sort of decision so we moved to middle America (Fairfield, Iowa to be exact) to tough it out as common folk.  Living in Iowa was a culture shock for sure, we have many cultural differences so the language barrier wasn't the only thing that had me spinning my first year here!  Also the fact that we had barely any $ to our name was something that we needed to get used to.  My parents always made sure that we weren't raised like spoiled brats by any means, but we always had enough in Peru. So going from "enough" to copping a squat at my uncle's house, then moving to low income apartments, then a trailer, from getting toys at Christmas in Peru to getting socks or 1 small gift for my brother and I to share, were interesting life changes.  I remember our first Christmas in Iowa, we had just moved in to our low income apartment and didn't have enough money to buy a Christmas tree, much less presents, so the sweet teachers at our school took up a collection and they got us a half dead tree, lol, but hey it was our first real Christmas tree ever! :)  They also got us some gifts so we wouldn't go completely without, which is what would have surely happened had it not been for their kindess.  The people of Fairfield are another reason we were so lucky to be there, what a blessed tiny town we picked! :)  The one thing we took away from our experience back then was that money had caused us nothing but problems, and that even though life is hard without it that we were happier as poor people in America than as Reyes' in Peru. :)  I don't want you to think that my immediate family was always wealthy though, my Dad was a cop, and we all know how little cops make, and my Mom was a stay at home Mom so we had plenty of monetary limitations during my first years of life.  It wasn't until we MADE my Dad quit his job as a cop that he started working for my Grandpa and we finally had some money.  But even then my parents always kept us humble, thank you, thank you thank you! :)

Life wasn't done throwing me curve balls, however, I stupidly fell in love at 16, ended up marrying way too young at 18.  Neither one of us was ready for such a commitment so after 2 very rocky years we threw in the towel.  And the end was straight out of a Jerry Springfield episode.  He cheated on me with my then sister-in-law!! Yup, my sister-in-law! LOL  Gotta laugh about it 'cause it's too absurd to do anything else.  Goes without saying that both my brother and I are happily remarried now of course, but that's a part of my past I would rather erase.  And this chapter certainly falls under the "many tears cried" category and, therefore, needed mentioning in this post.

So as you can see, many tears were shed in this crazy life of mine but it's all made me who I am today which is a resilient tough chick.  I could have done without having to witness death and violence but it seems that I needed that toughness to deal with the many seasons of my life.

Friday, August 26, 2011

A Dizzyingly, Wonderful & MonStrous Situation

I've not written in a few weeks, guess inspiration left me, which is not entirely a bad thing since I seem to catch inspiration mostly when things are truly rotten or when I'm just overcoming something awful.  No news is definitely good news in my world.  But you're not rid of me yet. ;-)  The past few weeks have been interesting to say the least.  Before my brother's kids came to visit us for 2 weeks (starting August 6th) I was dealing with some terrible dizziness that is awful and debilitating and makes me have to stay home like I'm on house arrest!!  I prayed and prayed that God would take this away so that I could enjoy my time with my little people and be able to do everything with them.

I'm happy to report that my prayers were answered, I had the best time with the kids, went to the Aquarium, the beach, the pool countless times, out to eat several times, the movies twice, go-karting, the Children's Museum which was so much fun and even had a surprise birthday party for my niece complete with a dance/karaoke party that night.  It was a GREAT time and honestly I've not been able to do all those things day after day for a long while, so I felt very blessed not to have to bow out of these activities with my kiddies. :)  As my fellow MSers can imagine, I braced myself for the MS retribution that would surely come, but it only took me 5 days to recover which must be some kind of record for me!  Typically I need 2 weeks to recover from their visits, and I have never done nearly as much as I have this time.  Thank you God!! :)  Sometimes the answer to our prayers are no, but sometimes it's a resounding yes and I'm so thankful I got to experience that this time. :)

We're also dealing with some uncertainty in regards to my hubby's job.  The company he's worked at for several years is closing their doors, so Kevin and several of our closest friends are finding themselves adrift in a job market that is less than desirable.  It's a scary time but it's also an exciting time, a time for new beginnings, new adventures.  Lucky for me I have a very talented, capable husband who already has some fabulous things in the works!  And I know God has our back and will always provide for us.  So as Luke 12:24 and Matthew 6:34 so eloquently put it -  "Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds!" , "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  We must trust that God will provide and fulfill ALL of our needs.  After much prayer I'm finally at peace with what's to come.  Thank you God for whatever new wonderfulness you have planned for us. :)

Stay tuned to hear how this new quest of ours turns out. :)

Monday, June 13, 2011

Still Fighting that CCSVI Battle & A Million Ways to Refer to "THEM" ;-)

As you all know I was super excited about getting the Doppler Ultrasound to see if I had CCSVI. I did NOT know that this test was actually going to be painful since it lasted 2 hours and they contorted my neck all sorts of weird ways and made me stay in those painful positions for too long!   Thank you MS for making my body so tender that this was excruciating!  I didn't know what to think when I heard the doctor say "good news and bad news, your veins looks perfectly healthy!",  as if that's supposed to make me feel better!?  A person without MS might think it great news, but I was really counting on this as another option to try to get to the bottom of this mess!! :(  My little heart was broken as we drove away from the Vascular Surgeon's office with feelings of confusion, fear, anger and defeat, to name a few.  But the next day I conferred with my fellow MSers online and so many of them confirmed that the docs missed the vein blockages when they did the ultrasound on them too and that the only way to really find out what was blocked was to proceed with the invasive MRV which is the actual procedure to unblock veins.  Think angioplasty, going in through the groin and all the way up to the chest and neck and then unblocking or expanding whatever vein needs it, if any.  The doc didn't want to do this without concrete proof that there was something to unblock 'cause the procedure does carry risks that he didn't think were worth it.  I told him that plenty of people had had the ultrasound which showed perfect veins only to get the MRV and find that they had blockages in the major veins afterall!!  He said I need to find a neurologist willing to insist on this and he'll do it,  otherwise he won't.  I read that there is actually a protocol for Dr. Zamboni's way of doing the Doppler Ultrasound that actually finds blockages without doing the MRV first, I'll have to check with the doc on this as well.  I'm not dying to have this invasive procedure done by any means but what would you rather have some pain and a chance of complications but possibly a better life? Or an uncertain, painful life with many terrifying question marks of what's to come??  I'll take my chances with the CCSVI if possible thankyouverymuch. 

Great news to report though!  I told y'all last post that my GYN had found a lump on one of the twins, lol, and sent me to do a Mammogram and Ultrasound.  I had this done last week and the girls are PERFECTLY healthy, nary a lump or bump or anything bad to report. :) And the mammogram was not painful like I expected it to be, woohooo!!  Learned a lot about that particular part of our anatomy.  Did u know that what boys like to think of as fun bags are actually little factories that are activated every month by hormones to get ready for milk production if need be?  That's where all the pain comes from every month.  And did u know that the part of the boobage that's right by the under arm handles over 40% of the work of the whole tata??  That's why that part's most likely to hurt the worse each month.  I'm sure the ones that are moms already know this but this blew my mind. ;)  I also learned that breast pain is the 1 part of our bodies where pain is actually a good thing, 'cause if you have cancer then you wouldn't hurt, it'd just be a lump, so pain is a good thing, go figure! :)  Needless to say I have a new found respect for my chesticles! ;-)

Other than that, nothing else new is happening with my health and no news in my world is good news!  My body's finally chilling out on me and not putting me through hell every month, knock on wood.  Let's hope that this break continues 'cause it feels pretty damn great to feel normal again. :) :)

Stay tuned to find out about other CCSVI diagnostic possibilities and about how fabulous it is to be me right now.  Doesn't take much to make me happy just give me 4 properly functioning limbs, a non cloudy brain and enough energy to do my thang and I'm good. ;-)

Monday, May 16, 2011

The LD on My Monstrous Life....In Someone Else's Words

I find that as much as I try to share, that I have a hard time articulating what "a day in my life" truly is like.  So I wanted to share what I found in a fellow MSers Facebook page, 'cause even though I didn't write it, it says so much of what I want to say.  He's also from my tiny town of Fairfield and he's the 3rd (including me) person I know from there that has Multiple Sclerosis.  Coincidence?  I think not.  My friend Christine, a fellow MSer was sharing info about a study she read about the possible cause for MS.  She said that even though I'm Hispanic, and we're not known for suffering from MS too often, that the study said  it could be all about having the pre-disposition to have MS and where you live for the first 15 years of your life.  That got me thinking, since I moved from Peru to Iowa when I was 11, and then developed MS by around 19 (even though I wasn't yet diagnosed my numb torso said it all, I just didn't know it then).  I've always considered Fairfield my safe haven, the place where my family and I went to when the crime in Lima got to be too much (that's a whole other story for another post ;-) ).  To think that my safe haven was also the cause for the worst thing in my life is a bit sad to think about.  Who was to know that I had this pre-disposition, surely my parents wouldn't have moved us to a place with such marked seasons had they known.  All water under the bridge I suppose.  But I'm left with dealing with the awful remnants of a decision we had no idea might define my life.  There really is no point in obsessing about this fact, I just thought I'd share this tidbit with all of you.  Please see below for the letter and poem that say all that I've been unable to say: 

LETTER TO "NORMALS" By: James Carmack
Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed.   In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me.  Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with sometimes, but I'm still me stuck inside this body! :) I still worry about work, my family and friends, and I'd still like to hear you talk about yours too.   Please understand the difference between "happy" and "healthy".  When you've got the flu you probably feel miserable with it, now imagine that I've been sick for years, though luckily I'm not in pain 24 hours a day every day (thank God!). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all.  It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things.  Please, don't say, "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to.  Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour,  and just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what MS does. Please understand that MS is variable, it's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes, may frustrate me to tears.  If I was capable of doing these things , don't you know that I would? Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously MS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, MS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end?) but it is not created by depression.  Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right can't be put off of forgotten just because I'm out for the day (or whatever). MS does not forgive. In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor. I need you on different're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me. GIVEN TO US BY SOMEONE WHO FOUND THIS WRITTEN BY A FELLOW MS'ER 

A GOOD DAY  Poem by: Kimberlee Waag
Because EVERYDAY can and will be A GOOD DAY!
Everyday I can hear 'I love you, mom" is a GOOD day,
If there comes a day where the pains too much, then
Everyday I can feel a hug from my husband and kids is a GOOD day,
If there comes a day where I can no longer see, then
Everyday I can still watch my boys grow and play is a GOOD day,
If there comes a day where I can no longer walk, then
Everyday I'm still walking is a GOOD day....

So yeah, I am in a bit of a nostalgic mood today.  I am tired of my legs giving me problems, I miss the days where life was easy, but today I can walk, see, hear, feel, speak so today is a GOOD day :).  But that doesn't mean that I'm throwing in the towel.  I will never stop fighting for a way out of this mess.  I know God hears my cries and I feel him closer to me today than I have in a while.  It seems that when something brings me to my knees that God takes that time to remind me he's right next to me, always.  Makes this so much easier to deal with, I am TRULY not alone in this. :) 

Happy on a Monday and with MS crap piling up, go figure! :)  Stay tuned for whatever else my crazy brain conjures up. :)

Monday, May 9, 2011

CCSVI, the New Frontier....Hopefully! :)

Since I don't want to come off as a Debbie Downer I have happier news this week. :) Introducing CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) drum-roll's a fairly new concept that was started by a doctor in Italy who's wife suffers from MS and whom he wanted to help.  He ran tests and found that she had blocked veins in her neck and chest that can cause blood to reflux back causing iron deposits (which can cause headaches, dizziness, heat sensitivity) and many other problems.  After the procedure she felt MUCH better from the MS and had even regained a lot of what her body had lost because of the disease.  Thus The Liberation Treatment was born, a term used for CCSVI that would later come back to bite us where the sun don't shine.  This procedure has to be done by Vascular Surgeons or Interventional Radiologists, it's an angioplasty but it goes all the way up to your chest and/or neck.  A lot of people with CCSVI have blockage in their Jugular Vein which is the biggest vein in the neck.  I know there can be complications but when you're in a lose/lose situation you have to take the chance.  90% of  MSers have CCSVI and all of the Msers I know that have had this done have gotten miraculous results. :)  Turns out that MS is not the blame-all culprit for all our ailments afterall.  For example, my facebook friend Denise, a fellow MSer and the person that penned the term MonSter, had a lot of the same symptoms I do and now she can walk long distances, wear high heel shoes (these are just dreams for me since I can't do either anymore), doesn't have insomnia, fatigue, heat sensitivity and now lives her life virtually MS free thanks to CCSVI.  It's not a cure but it's the best that we got right now.  :)  They've found though, that the blockages can come back after a while and/or may have missed some blocked veins, so they might have to do the procedure repeated times.  Oh well, better than nothing by a LONG shot and definitely worth the risk. :) :) :) :)

There was much debate last year about this, neurologists and pharma companies were trying SO hard not to lose their cash cow (MS) that they were putting all kinds of obstacles in our way since they're heartless a-holes that only care about fattening their own pockets!!  So they came up with whatever they could to stall this, starting with attacking the name "Liberation Treatment" by saying that we're just  looking for a miracle, that it's all due to the placebo effect, that  it's not proven, it can be dangerous, there have been no studies, blah blah blah.  A lot of Vascular Surgeons were shut down last year because of this. :(  So the poor MSers had to go to Switzerland, Holland, Italy to have this done costing them thousands of dollars.  If people wanted to get the treatment in the US or Canada they had to pass on that we should NOT say that we have MS but that we are just suffering from headaches and dizziness and needed to see if we had blocked veins.  And the insurance companies were NOT covering the procedure 'cause they didn't think it was "medically necessary".  Ok so  they DON'T think that having a blocked Jugular vein and other veins is important and could cause one's quality of life to suffer because of the side effects?!  And furthermore, they WOULD consider it medically necessary for anyone that DOESN'T have MS, but having MS immediately made it not "medically necessary"???!! WTH??  So imagine my happy shock when I saw an article on Facebook about Baylor College of Medicine here in Houston doing the CCSVI procedure! :)  And  not even having to hide that they're doing it specifically for MS patients since the proof is in the pudding and those pharma/neuro fools can suck it!! LOL  I think the reason why Baylor's not being picked on is because they are just using a balloon to open the veins, then removing the balloon and are not inserting stints to keep the veins open.  There was some controversy with using stints not meant for the Jugular and other veins. That's why I wanted them to sort these things out before I pursued this.  So being the mature, rational thinker that I am I gave myself some time to think about it......yeah right!  Thought about it for 2 seconds and of course contacted the Vascular Surgeon at Baylor and almost 2 weeks  later (the wait was brutal!), I have an appointment for an ultrasound and to see the Dr the same day, on June 2nd. :)  He IS participating with my insurance which I hope means that they WILL pay for all or most of this procedure.  Anything that brings hope of normalcy and does not break the bank is welcomed in the Blackwell household. :)  I hate that I have to wait until June 2nd being that the facial spasms although way better, are still there, plus I now am having issues with weakness and clumsiness with my left leg, making it hard to walk or stand for long. :(  That MS always keeping me on my toes!  Whatever! I now have hope I didn't see coming my way for a very long time. :)  So although this might sound weird to people without MS, I REALLLLLYYYYY hope that I have several blocked veins so they can do the CCSVI procedure on me!! :) :) :) 

This is the link to Baylor's CCSVI page if you wanna check out specifics about it.  Those without MS should keep in mind that u too could have CCSVI, so I encourage you to check it out as well.  It's important to find a surgeon close to you because as I said, you will probably have to get this done more than once and traveling can get expensive  = 

Stay tuned to learn about the holistic treatments that have helped me so much in the last few years and hopefully read about how CCSVI has changed my life for the better. :)

Monday, May 2, 2011

Begging For A Break From My MonStrous Life

I was JUST overcoming the latest MS attack which was on the left side of my body - numb leg, foot, thigh, part of my torso, arm, hand and horrible nerve pain on my shoulder.  This is my first attack in almost 2 years so that's wayyyyyyyyyyy better than getting an attack once a month with the CRAB drugs. :)  My hollistic Dr. prescribed Alpha Lipoic Acid (Antioxidant IV) x4 as treatment, first time I'de ever used this so imagine my surprise when it DID take away the pain and numbness, except numbness on the tip of my thumb and forefinger which took a little longer to mend.  It's 100% natural, has 0 side effects and only takes 20 minutes to administer unlike the horrid steroids I used to take, PLUS it worked way better than the poisons ever did!  Let's rejoice for that....but not for too long!  'Cause rather than getting a break, I am now experiencing ugly facial spasms that are making me look like a stroke victim!  This is the 2nd time this has happened, first was just 6 months ago.  As some of you may know my nurse sister-in-law Keisha visited last week and brought up the possibility that I might have magnesium toxicity.  This made sense since I take 1000mgs a day and the recommended dose is 250mgs and some of the side effects are facial spasms and trouble breathing, and I've been having a hell of a time with my asthma.  But my general doctor drew blood and said that my levels are fine and it is NOT magnesium toxicity. 

This is partly great news since that means I can continue to take magnesium for my digestive health.  But not so great 'cause that means I still don't know what's making me look like Anthony Hopkins in Legends of the Fall!! LOL  My family dr. prescribed a muscle relaxer both times.  He ordered an MRI the first time to make sure that a mass, like a tumor was not pressing on my facial nerve, and luckily it wasn't.  Phfewww, another potential crisis averted! :)   But now since it's happening again I fear that I'm going to HAVE to bite the bullet and see a dreaded Neurologist.  Only reason why I'm doing this is because in my never-ending online research I read that facial spasms can happen to MS patients, when we get a lesion in the part of the brain that controls the facial muscles, and can be successfully treated with anti-seizure meds like Neurontin.  The muscle relaxers have done nothing other than make me sleepy and dizzy. :(  I definitely wanna know if that's what this is 'cause I do NOT want to end up with a crooked face for the rest of my life!! My vanities have definitely been and will continue to be tested, but I just avoid mirrors at all cost.  I can't avoid mirrors forever though...:( Having a face that is not completely unfortunate was at least something, please don't take that away from me too!!!

In times like this I remember one of my favorite Bible passages, Jeremiah 29:11 "For I know the plans I have for you" declares the LORD.   "Plans to prosper you and NOT to harm you.  Plans to give you hope and a future".  This passage always brings me comfort and I hope it'll do the same for you. :)  I heard something pretty great at church a couple of weeks back.  God allows us to go through horrible suffering because when we crumble is when we need Him most, when we're stripped of all self assurance is when we remember that it all comes down to Him and that He's the only one that can help us.  So instead of being mad at God for letting us go through everything, we need to thank Him for making us strong enough to get to the point of brokenness.  Because there lie many blessings. :) 

So life goes on as it has but at least I do NOT have to stop taking my beloved magnesium. :)  Thank God for the little things. :)  He has graced me with a great support system in my wonderful husband, family (that includes in-law family) and fabulous friends.   I have a beautiful house, more than enough to eat, shoes on my feet and the list goes on.  That's so much more than the majority of the world has.  Some might say I'm cursed but I consider myself a very blessed woman. :)  I have been blessed with so much more than I deserve. :)  We all have a cross to bare, mine just happens to be REALLY heavy! LOL  No wonder I've fallen so many times! ;-) Luckily I am not required to bare this burden on my own, God is helping me carry it and one day I will know why this has happened.  Until then to my fellow Msers and anyone dealing with a lot in life right now, let's keep on keeping on.  Let's keep our faces held high, even if that face is crooked, and remember that our suffering is not for nothing, that God has a plan for us all, and that sometimes that plan takes us places that we would rather not go. 

Stay tuned to hear about my new hope and natural alternatives to the CRAB drugs. :)

Wednesday, April 27, 2011

A Journey Paved With Good Intentions & Pain.....Lots of Pain!

If I believed in reincarnation, I would think that I must have been the most evil person in the world to deserve what I've had to deal with so far in this life. I did some of this to myself, by choosing to stay blissfully ignorant for so long.  Some was done to me without me deserving it or asking for it.  I have gone from livid, to defeated, to numb and back again! but what's the point of being mad.  Anger is just a mask for fear and frustration, so I might as well take the mask off and flaunt my inadequacies.  This my friends is how my ill-fated journey began....My MS treatments started in '99 with a horrible neurologist that couldn't care less about his patients, great start!   But sadly enough it has been my experience that he behaved like the majority of MS neurologist have through the years, with me at least.  I started with Avonex, a once a week intra-muscular injection (into the muscle) that hurt like a mother, and gave me horrible flu-like side effects nearly every week.  Imagine having the flu, complete with fever, chills, body ache and headache weekly!!  It was awesome, as you may imagine.  I suffered through this torture for 2 whole years, never knowing that an exacerbation, or attack did not happen ONLY when all the symptoms piled up together, like they did when I was first diagnosed.  Oh no, just 1 minor symptom can constitute an attack.  A fact which would have been fabulous for my neuro to share with me, especially since I was completely ignorant about the very disease that I was just diagnosed with!  But alas I stayed with Avonex for 2 years, all the while having attack after attack and not even knowing it.

I switched neurologists after that fiasco and also changed my treatment to Copaxone, a daily sub-cutaneous (under the skin) injection.  By this point I had 8 sclerosis in my brain (scars or lesions).  This medicine was a welcomed change since the side effects were minimal compared to Avonex.  I did have painful sight reactions though (bruised, red, swollen like a golf ball under my skin).  Needless to say, I couldn't wear short sleeve shirts or shorts without people thinking I was a battered spouse!! Ha!  Pretty sure that if I would have continued with this treatment that my skin would have just rotted off!! lol  The first 4 months were heaven in comparison to the 1st 2 years of my diagnosis, no attacks, feeling much better simply 'cause I wasn't suffering by stabbing myself in the muscle, and the painful flu symptoms.  But after that the attacks started once again, and with it came persistent dizziness, headaches, and of course the evil fatigue began around that time too :(.

The attacks continued every few months so the Dr. again switched my meds to Rebif, a much stronger medication.  Rebif is like Avonex but the symptoms are surprisingly a bit less since Rebif stays in the body the whole week vs the body having to get used to Avonex over and over. They're administered differently (sub-cutaneous instead of intra-muscular, and 3 times a week for the Rebif vs. once a week for Avonex).  Like the others, this worked for me for a few months but then the attacks started creeping back, and along with them, more lesions.  I was on Rebif for 6 years, in that time I moved from Atlanta to Houston and got another Neuro, this one was the coldest of them all!  He took me off all the added crap that the last neuro had  given me to treat the symptoms though, like Neurontin (usually for epileptics - meant to treat dizziness); methotrexate (chemotherapy!- meant to help thwart the attacks); Effexor (usually for depression-also meant to treat dizziness).  It's like these dudes were flying blind!!  No wonder I was so bloody sick for so long.  No one is meant to take chemotherapy pills, even in small doses, for any extended period of time...again a fact that might have been helpful for the doc to share with me!!  Instead I suffered for a couple of years throwing up every week or twice a week.  FML this was definitely NOT living!  I know what you're thinking "what kind of fool stays on chemotherapy and doesn't even question this?" I was SO clueless for believing in my Dr's for so long and thinking that they knew better! :(

For my many attacks the doctors first prescribed Solu-Medrol which is the go-to IV steroid to treat MS attacks.  I also tried IVIG (Intravenous Immunoglobulin) which is made from human plasma, thank GOD I didn't get Aids or Hepatitis! This gem did NOTHING for me and cost the insurance $20,000 for 5 days of painful 8 hour treatments, man did it make my head explode, so much so that they had to put me to sleep w/ Benadryl just so I wouldn't feel so much pain.  Then seemingly, a light at the end of the tunnel, Prednisone, an oral steroid, no more painful IV treatments.  But surprise, surprise it also did nothing for me, only made my knee joints painful, exhausted me, gave me infections, sleepless nights, made me almost diabetic and the list goes on.  My last IV steroid treatment was May '09.  This exhausted me SO much that I couldn't even shower on my own, change clothes without resting in between or do anything other than sit and feel sorry for myself.  By this point I was facing the attractive options I detailed in my last post and knew that I couldn't allow myself to get worse by letting these Magoo doctors lead me around.  It was easy for them to prescribe medicines like they were giving out candy, but I  was the one having to deal with the consequences.  By the time I had over 30 lesions in my brain, heat sensitivity and facing a change to yet another even more horrible "treatment" I realized I needed to take control of my life. 

That's when I finally had enough with the pain and uncertainty that seemed to be all that the neurologists could offer me, and that's when my CRAB-drug free life began.  That's a term used for Copaxone, Rebif, Avonex, and Betaseron, the latter of  which was the only med I didn't try.  Re-reading this brings tears to my eyes, just seeing how much I endured and how long I had to suffer unnecessarily before wising up.  As if MS isn't painful enough on its own right?! 

Stay tuned to hear about my life changing alternatives and becoming a "hippie" as I am sometimes I do NOT smell of patchouli and I DO wear deodorant!! ;-)  Sorry so long but there was much to say.

Thursday, April 21, 2011

Nominated for The Versatile Blogger Award! :)

Versatile Blogger!

Many thanks to Mandie at for nominating me for the Versatile Blogger Award!  That definitely made me smile today!

These are the rules:
1. Winners grab the image above and put it in your blog.
2.Link back to the person who gave you it.
3.Tell 10 things about yourself
4.Award 15 recently discovered bloggers.
5.Contact the bloggers you have awarded to let them know they have won.

Here are 10 things about me, read at your own risk =

1.   I'm from South America - Lima, Peru to be exact

2.  I overlook things right in front of my face sometimes (Kevin, where did you put the.....) lol

3.  I LOVE to sing and be onstage so I'm a karaoke diva

4.  I'm a Peruvian that can't handle spicy food, go figure

5.  Half of my family are indiginous Peruvians but I look like a total white girl, what's up with that!?!?  Must be the Italian/Spanish blood in me

6.  I have 2 dogs, Bella and Charlie.  They're SO spoiled! ;-)

7.  I work from home as a Spanish Interpreter for a company from California

8.  I used to want to be a writer or a psychologist, neither of which ever happened

9.  My house got broken into last year, with me IN it.  They took my TV, wrecked my living room and broke my front door, piercing a hole through the sheetrock.  $3,000 of damage in 60 seconds, now that's talent!!!

10.  I'm marginally addicted to Facebook.  I LOVE that I've been able to reconnect with people I counted as lost through the years

MY NOMINEES IN NO PARTICULAR ORDER (I don't know 15 yet! lol)

Mandie - To Love a Rose
Stefanie -Shortstackstef
Adriana -  Adriana Bee

Tuesday, April 19, 2011

Every Story Has a Beginning...This Is Mine

I guess I look healthy enough.  I guess that's why the people at the law firm I worked at couldn't understand why I HAD to quit for health reasons back in '07.  That is both a blessing and a curse because most people refuse to believe that which they can't see.  I sometimes have a hard time believing it myself, I can feel perfectly normal 1 minute and awful the next.  Luckily things have improved immensely for me since I decided to take control of my own health instead of being at the mercy of my neurologist, and since I took a part time job to try to bring the stress level down.  I write this in the hopes that others will find freedom from the so-called "medicines" that are so unsuccessful at treating most of us MSers.  I also write this in the hopes that my friends and family will come to understand what life in my shoes is like a little better.

I was born in Lima, Peru (that's in South America for those that don't know) and moved to the U.S. when I was 11, so I'm Hispanic.  This is not a disease that people of my ethnicity are affected with often, however, I was diagnosed with Multiple Sclerosis when I was 21, in '99.  I had just moved to Atlanta, GA from Fairfield, IA and I counted myself blessed because I had moved to a city that had one of the most renown centers for neurological disorders around, The Shepherd Center.  I was young, scared and uninformed.  For many years I chose to live in the dark because seeing the light would mean I would have to face what MIGHT be a grim future.  That was one of the biggest mistakes of my life, but hindsight's 20/20 right?  Had I chosen to face reality sooner I would have seen that regular western medicine did NOT hold the answer for me and was not going to help me fight this disease.  Instead I allowed years to pass and certain irreversible effects to happen to my body before I wised up.  I finally came to the realization that I needed to make a change after seeing a friend that also has MS and was living a normal life thanks to getting off any FDA approved MS medications.  I was living in pain because of the treatments thinking there was no other way and in fear for what my future would hold. The prospect of getting out from under my neurologist thumb was terrifying to me, but more terrifying than that were the prospects that my doctor was suggesting as "other treatment options".  He first suggested Tysabri which is one of the newer medications and has many awful side effects, one of which is a track record of killing several thanks, next!!  Then he suggested an experimental treatment where, get this, they would give me super heavy doses of chemotherapy in order to completely wipe my immune system out, and then rebuild it back up hopefully MS free.  This is of course given that I don't get even a mild cold or even a tiny infection (Like a hangnail) which would surely kill me without an immune system and which has killed several people that made the mistake of trying this "treatment" and blindly trusting their Neurologists.  As attractive as it sounded to be a self-imposed AIDS patient, I had to turn both of these options down, but being that none of the treatments I tried worked I had to think of other options.  So began my skeptical journey into natural alternatives, I got off any injections that were poisoning my body instead of helping it and began taking charge of my own health.  It was one of the scariest and best decisions I've ever made.  To say that I have lost my faith in doctors is a gross understatement.  I've seen them be only interested in working with the pharmaceutical companies to fatten their own pockets, at the expense of so many MS sufferers having a much worse quality of life BECAUSE of these "medicines".  I felt sick as a dog for 11 years so forgive me if I call them what they truly are....poisons!

My reason for writing this is to share my own situation, issues that I've been dealing with and research gathered through the years.  My hope is that everyone that reads this, will be free of the poisons our neurologists love to call "MS treatments" and find out that there are better, less painful ways to treat this disease.  And that no matter what you think or what your neurologist told you that there IS hope for a better life.

Stay tuned for information on the MS drugs I've unsuccessfully tried and the natural options that have changed my life.