The Beginning of a New World...

Ten months... WOW! Has life been a roller coaster ride... I mean, Life is always a roller coaster ride, IF one really stops and analyzes every twist and turn it takes... One minute I am a mother of four beautiful children, the next I am kissing my baby boy's cheek for the last time... One minute we are working with the bank to have our mortgage lowered to one we can afford, as I am unable to work and collecting SSD & SSI (only half the time because of John's income)... The next we are being forced to "Short Sale" our home in lieu of foreclosure; all thanks to Wells Fargo messing around losing paperwork and doing what they do best "setting people up to fail!" One minute in this ten month period, I am a grandmother of two, the next I have three... I am only able to see the two by my eldest son because My granddaughter by my deceased son, for some unknown reason I am not allowed to see... One minute my baby girl is a just senior in high school and the next we are preparing for her graduation... One minute my husband is cruising along, minding his own business, doing his job diligently, shoveling the steps at work... The next he is on his butt, hurting, having to go to the doctor, the neurosurgeon, and having to have back surgery... UGH!

Not complaining, because We can handle this all as a family unit... All this you would think would make a family crazy... It almost did drive my husband crazy, but I had to get stern with him and remind him "A House does not a HOME make... It is the PEOPLE inside it that makes the House a HOME!!!" I also had to remind him that I am not one of THOSE women who is going to "jump ship" just because times are tough... When times get TOUGH, the TOUGH get TOUGHER!!! I am here with him for the long haul... I didn't say my wedding vows for the fun of it... I took them to heart... When I stated "for richer or poorer, in sickness and in health, till death us do part..." I meant it with ALL my HEART and SOUL!!! Besides my babies that I carried in MY BODY for 9 months, He is the only other person in this world that I would devote my life to - besides God; but he isn't a person, he is a Spiritual entity...

With Angie going to graduate soon, I am beginning to feel that empty nest syndrome... Even though when she spends the night somewhere else, she can not sleep and is miserable... In August she will be 18 years old, I can not hold her to her word that she will always want to stay with us... Eventually she will want to spread her wings and fly... I am willing to allow her to do so... I have been preparing for this day for a long time now, but I still get that empty feeling inside at the thought of it... She did a report in school about MS which scared her... I don't want that fear to tether her here with her Dad and I. I want nothing more for my baby girl than to be happy, to spread her beautiful wings, and FLY... She deserves nothing but the BEST out of this life... Out of all the turmoil we have suffered through as a family, the fight through the depression of losing her beloved brother Micheal, and all the other crap she has dealt with - with Such maturity, I can only pray that my beautiful little Angel knows just how PROUD I/ WE are of her! That we only want the extreme best for her as she deserves it - more so than ANY OTHER kid her age I know!!!

Our Angelia, as perfect of a daughter anyone could ask for... Granted she has had her times, but you couldn't want for a better child than her... She has completed 9th, 10th, 11th, and 12th grade classes that she needed to graduate in 2 years!!! Yes, I said 2 (TWO) YEARS!!! She had an after-school job working on a horse ranch; which she loves immensely! Learning how to ride, train, birth, and breed horses... She may have had boyfriends throughout this period of time, but she was a good girl; keeping that preverbal aspirin between her knees... She knows what she wants... Her goals firmly ingrained in her mind... She clung to them like they are the most precious things in the world (her goals)... Knowing full well, one false step can throw all her goals and dreams fervently right out the window... No drugs, No smoking, No drinking underage, no sexual explorations, nothing but school, work, home, and just having fun being a "goodie two-shoes" teen-ager... At least I am thankful for one thing, She may be a "goodie two-shoes" teen-ager, but she does have good friends... She has made the right choices... We must have done something right with her like her elder sister... She is at the threshold of a bright and wonderful New World... One of a Young beautiful responsible adult with goals and dreams that she is more than capable of accomplishing!!! Her Daddy and "Momma Mia" will be standing right behind her offering her all the support and guidance she needs to remain the confident young lady we raised to obtain those goals and dreams...

Even though this New World will be different, change can be a good thing... John and I will be okay... I know that... We have each other... We have Krissy; who has disabilities of her own and can not move out on her own without support... That in itself is a whole other story...

Stress and MS does not for good bed fellows make...

When watching Forrest Gump he stated "My Momma always told me 'Life is like a box of chocolates... You never know whatcha ya gonna git...'" Well, that dear Forrest is an understatement!!! Life can throw you a bunch of curve balls that cause you all kinds of stress... God blesses you with 4 beautiful children that you hope and pray will grow up normal, healthy, and wise... Only to find out when one is 4 she will never be "normal" and one has all kinds of behavioral issues - his choices seem to be the worse possible choices EVER... ALL of which cause you stress... Then of course there are the normal every day operating procedures of Life - bills, lay offs, bills, new job, not enough money, bills, household appliance break downs, over due bills, health issues, more over due bills... UGH, it never ends... It seems like the more we try to get ahead the further we fall behind due to one reason or another... Okay, this deserves further explanation... Lets start with the son with behavioral issues - STRESS!!!

My son at 17 got a young lady pregnant... Accepting responsibility for his child, he married the girl with my "blessings" - well, under extreme pressure from them both... They kept pressuring me to sign the papers for them to get married, so I did... Allowed this girl to move into OUR home... Dealt with her disrespecting me by not helping out around the house or by keeping their room clean... I dealt with all the BS of her turning off my son's alarm clock so he was not up and getting ready for school... I dealt with his disrespecting me about going to school and having 4 - YES 4 tobacco in school charges against him... I dealt with him telling me I had no right to discipline him for his bad behavior, disrespect, and not helping out with chores...

*** Note: This blog was started a few months ago... Now that Micheal has committed suicide this blog seems like a mute point to make, but I am going to post it anyway... Maybe it will help me to make some sense of why he decided to commit suicide... I don't think anything will ever help me to make sense of it... Micheal was my most difficult child behaviorally, but he was also a blessing... He was special... Maybe I took him for granted... Maybe I did try to change his behavior, but that is a parent's job; isn't it??? I did love my Micheal, with all my heart... Just like his brother and his sisters... I love them each in their own special way... Each of my children are my favorite for their own special reason... Micheal was my favorite because he had a heart of gold and took my teaching of the "Golden Rule" to heart and lived by it 110%... I don't think I will ever understand why, but maybe my blogging will help someone else...

Forgive me if my blogs are not of my life with MS for a while and now concentrate on this subject for a while... But I am using this as a tool to help me - personally - cope with what has happened... Maybe I can help someone else as well in the meantime...

Hugs <3

Life is sometimes WAY too SHORT...

My handsome Baby Boy Mikey

Mikey and Angie (Big Bro and Baby Sis)

Mikey, Shoni, and Lilly

It has been quite a while since I have felt like blogging... I have been through alot in the past several months... From fighting with the handsome young man you see at the top of this blog, to having to say a final good bye to him... It isn't quite fair when a mother has to kiss her beautiful baby boy's cold cheek, knowing that she will never be able to look into his gorgeous blue eyes ever again or hold his hand through a tough time in his life... That she is left wondering why he decided 6 days before his 18th birthday that life just was not worth living any more when he had so much to live for... Like his baby sister... His baby girl Lilly... His wife... Not to mention the rest of us here that love him....

In 15 short days, Mikey will be gone 2 months... It doesn't seem possible... I sit here thinking that it is all just a really bad dream... I remember his funeral, but just keep hoping that it was that bad dream... I keep thinking about that day and the words come out like a poem...

It scares me to think how short life can be...
I think back of the day you came to me...
As I stand here, you're so cold and so still...
So different from that day in September's chill...
I want to cry, I want to scream!!!
This has to be a dream!!!
You can't be gone, you can't be dead!!!
This is a mother's worst fear, her worst dread!!!
My baby, my son, my love so true...
Your lips through the make-up, I see are so blue...
My heart you had stolen that day you were born...
My heart now forever will be broken and torn...
For your sisters and brother I will remain strong
But for you,FOREVER grieving, I know is not wrong
I love you my Micheal, my son and my friend...
A heart of Gold for all you had until the end...
You loved so honest, so pure and so true...
Not for just one, but for all that you knew...
The world is a colder, darker place without you here...
We will have to muddle through keeping your memory near...
I pray God keeps you safe in his loving arms...
Until we meet again in Heaven's splendor's and charms...

No words can heal my heart... Nothing can make me not feel this pain... I see his face everywhere I turn... I even bought him a Christmas present, not thinking of course... Because I got the girls something and saw one that I knew he would like, I just bought it... It was like, "What the hell were you thinking? Mikey is gone! He's dead... You can't send him Christmas gifts where he is at now! How dumb can you be?" This of course was after I had gotten it home... Of course it was on sale and I can't take it back... Thank God, it is something I can give to someone else instead... It isn't like it has his name on it and it can't be given out to another person... That is one good thing about it...

Life is a fog... I am so lost... I have to keep going, but I feel like I just can't some days... It gets hard to breathe sometimes... Not to mention what it has done to my physical health... UGH, will life ever get back to normal??? My MS has been flaring up really bad lately... I have been meditating, but it doesn't help... Nothing helps... I guess that is what happens when all you can do is sit and stew over the reason why your son took his own life... Even when you try not to think about it, the questions pop up in your head... What could I have done differently??? Why didn't he call or text me??? What was going on that he did this??? Why??? WHY??? WHAT IF??? UGH.......................................................

Bradford County Man Wanted For Kidnapping And Assault

Bradford County Man Wanted For Kidnapping And Assault Would make it easier if they posted a picture of the person he kidnapped as well, but please if you are in this area and you see this person CALL 911!!! Tell them all the information you can gather about him... Location you have seen him... Direction of travel... Type of vehicle he is in... License plate number if you can get it... BUT PLEASE, Do not try and be a hero - HE IS SUSPECTED to be ARMED AND DANGEROUS... DO NOT TRY AND APPREHEND yourself or follow to a residence... he may try and shoot you... Thank you for your help!!!

A Badge of Honor??? Rated PG-13

It never ceases to amaze me each day I wake up, I thank God I am still able to stretch my legs and walk on my own accord, BUT I find I am experiencing more and more symptoms of MS... I don't know whether to call these symptoms "a badge of Honor" or what...

I am using my blog to chronicle my experiences with MS symptoms, as a means to keep it all in check... We all know how MS affects our memory and cognitive functions on a daily basis - some days our recollection is good, other days not so good ~ some days we can remember that we are suffering this symptom, other days we have a hard time remembering what we ate for breakfast - and find it best to write stuff down... I find that sharing my experiences with others that have MS - some that have been recently diagnosed - may help them through hard times as I try and put a bit of a humorous spin on things... YEAH, I find that humor makes this journey a bit more of an easier pill to swallow... Otherwise, I may just turn into a bitter old bitch that just decides to give up on life!!! And - excuse my language for a second - FUCK that!!! I got too much to live for to let this damn disease beat me!!! So, my dear beloved MSer friends, I pray that my chronicles help you through a tough spot in life... I may swear like a sailor and curse like a soldier once in a blue moon, BUT I promise to keep my blog mostly Rated G and for the most part PG-13 at least... Not much Rated R stuff... Only once in a while... But I will for warn you first...

Anyway... My newest development is the B & B stuff everyone is always talking about... Yeah, it hit ME now... If I don't make a MAD DASH for the potty room, I have an accident... Yesterday afternoon, I didn't even know I had to go - until it was already coming out... I was running for the bathroom!!! Good thing we have a "potty room" down stairs and I had clothing on the dryer - OTHERWISE I would have been HUMILIATED!!! I haven't had an accident since I was 8 1/2 months pregnant with Angelia - my youngest daughter - and she was laying directly on my bladder KICKING IT!!! It's bad enough in the mornings I have to have my husband help me out of bed IF I was dumb enough to lay on my back during the night and stay there... IF I do that, my legs just won't work because my back spasms and seizes up my legs... It's a rather new development as well... Now with my neck issues due to falling out of bed, well that is just icing on the cake isn't it??? I actually have to roll out of bed in the morning - praying I can make it to the bathroom!!! I wake up about 4 times a night - running to the bathroom... This is something I NEVER did, unless of course I was 6 - 9 months pregnant...

Then the other "B" - OMGosh... Where does it ALL come from??? I do NOT eat THAT much!!! I mean REALLY??? How in the HELL can a person S.H.I.T. this much??? I mean really 4 to 9 times a day when a person only eats maybe 2 meals a day - if she's lucky... I only eat when MY body tells me I am HUNGRY - other wise I get SICK - nauseous sick - and feel all kinds of bloated like my stomach is going to blow up... So really, where does "IT" all come from??? And why is "IT" so watery??? Wait, the watery part I understand... It's because I drink so much fluids... But, really, Really, REALLY??? Come on... Does anyone else experience this??? If I am not making the "MAD DASH" to the potty room for the "#1 B" I am making the "MAD DASH" for the "#2 B" it is infuriating!!! I can barely "contain" myself when I make those "mad dashes" to the potty room... It drives me absolutely crazy! I just don't understand why it is happening to me now...

I am starting to have other symptoms that are confusing me too... I mean I have been taking my Avonex therapy right along religiously... I take my medications - Religiously... I have been a good girl so I don't understand all of this... Is it normal for an individual who is on a MS therapy medication like Avonex to start having more symptoms? I thank God that I am going to see my neurologist on the 31st because this is all things I need to discuss with him I am thinking... I just do not understand why this is happening all of a sudden... Well, not all of a sudden... It has been over the last 3 or 4 months I'd say... It is quite infuriating when a person is used to being quite independent then having to rely on people...

 My poor sweet husband, God bless his gentle soul, gets up at 5:30 am, works all day, then comes home and waits on me hand and foot... It isn't fair to him - at least I don't think so... On his days off, he does our laundry, washes our sheets and remakes our bed, cleans our room, and does things around the house that I used to be able to do... This so isn't fair to him... Lord knows I try, but I just can't... I feel so bad, but what can I do... He WILL NOT allow me to do these things any more... He knows if I try, I will be down on the couch not able to move for 3 days or more... I do help fold our clothes, but I can't make our bed... He is ALWAYS after our daughters to help keep the house clean, but they do not understand HOW important it is... They do not understand IF the kitchen is NOT clean I can get deathly sick... So, I go behind them and clean it - or should I say TRY and clean it... My oldest daughter I can kind of understand her, she has Asperger's syndrome - which is on the higher end of Autism - but we have been working with her FOREVER so she she be used to it... My youngest daughter (who is 17) THERE IS NO EXCUSE for her except LAZINESS or teen-aged angst "know it all" bull-crap... So of course Mom suffers... There is always some excuse for their behavior and of course I do not want to deal with the stress so I just let it go... So I deal with my allergies acting up because the house isn't as clean as it should be - like I would have it IF I could keep it clean like I USED TO... I clean what I can when I can, IF I can... I deal with getting scolded like a child by my husband because I did something I shouldn't have and made myself hurt... Oh well, it has to get done Right??? IF I waited for the girls to do it, HELL would freeze over first... So I will bust my butt and make my muscles spasm IF I have to... The girls can go with out their cell phone time, if they can't help me out!!! To hell with them!!! IF YOU want something from ME, darn it YOU HAVE TO EARN IT!!! and to HELL with them IF they don't like it!!!

So is MS a badge of Honor??? I think so... Ya wanna know why??? Because no matter what, we were this disease like a soldier wears his uniform - WITH PRIDE... We do what is necessary to make it through our day... We strive to make it to the potty room with dignity - when at all possible... We PRIDE ourselves on what ever we can do BY OURSELVES... SO my dearest friends, IS MS a badge of honor - I say DAMN STRAIGHT it is!!! Anything you can do independently as long as you can IS a BADGE OF HONOR!!! When you think of it that way, well, it doesn't seem that bad does it??? Maybe I am just overly positive today - even with all the negative going on in the last several months... However, I tend to try and look for the positive over the negative otherwise - like I said in the beginning - I would be ONE bitter Bitch!!! I REALLY do not want to turn out that way!!!

Hugs and Smiles sent out to all of you my dear MS friends :)

FDA Issues Warning On Unproven MS Treatment

FDA Issues Warning On Unproven MS Treatment I thought this was something important for all of my dear and treasured MSer friends... PLEASE read this if you are even considering Liberation Therapy or a Liberation Procedure... I think you may reconsider... Hugs my friends... I love you all even though we haven't met... We all suffer from the same disease in one form or another... PLEASE READ THIS...

OMGosh WTF??? I Fell Out of Bed!!!

     Yep, that's just what I said... I fell out of bed Thursday night... I was sound asleep and I do mean SOUND ASLEEP when PLOP right on my aspirin bottom I went... I don't know why or how, but off onto the floor with a huge Kerplop I went!!! Surprise Surprise!!! I was stunned!!! I screamed for my husband John to wake up and help me get back up into bed... He was just as stunned as I was... He thought he had kicked me out of bed and could do nothing but apologize to me for doing so... I had to tell him that he wasn't the one who did it, I just fell... I didn't know what the hell happened... I was sleeping one minute and the next thing I knew I was on the floor and IT REALLY F**KING HURTS!!! I was laughing and crying at the same time... Laughing because it was actually funny that a 42 year old woman ACTUALLY fell out of bed like a 4 year old child... Crying because it HURT LIKE HELL!!! My WHOLE left side ached like all get out, but I was TOO tired and TOO groggy to want to go to the hospital to get checked out... In the morning, I didn't think anything of the fall... I just carried on as usual... I got dressed, put on some eye liner and mascara, and did my hair so I looked presentable when I took our dog Bear to Angie's school for her presentation on Chow's... BUT as the day progressed, I started feeling worse and worse... The pain was getting unbearable... Nothing I did was making it go away... I took some Ibuprofen, but I was still in a lot of pain... I did some meditation - YEAH NO, that didn't help... So, it was time that I buckled down, swallowed my pride, and went to the hospital to get evaluated... My neck hurt, my left shoulder hurt, my left elbow hurt, my left wrist hurt and was swollen, my left hip and knee hurt, and my tail bone hurt... John agreed it was time to be evaluated by medical professional and since I couldn't get into see my family doctor - plus I would be sent to the ER for x-rays anyway, it was best to just go to the ER...

     So off to the ER we went... I gave them the down low of my health history - previous surgeries, meds list, the whole nine... Even though I told them first and foremost that I had discs removed out of my neck and that my neck hurt really bad, the only thing they x-rayed or were only really concerned with was my wrist... Now my neck is still really bugging me causing both my arms and hands to be spastic and pins & needlely and my shoulders to hurt BOTH of them... In between my shoulders hurt so I think I jarred my neck really bad... Seeing that I am missing discs in my neck it made the fall from my bed even worse on me I think... I was told any sudden jar could cause issues with my neck and the ER doc didn't even seem concerned with it... Thank God I have an appointment with my neurologist on the 31st... He will certainly be concerned with it... He will not be very happy that they were not more concerned about my neck... My neurologist is a God send when it comes to my health... He is more like a father figure, I dare say, because he is quite anal when it comes to my care - any of his patients care... That is what makes him an excellent doctor - He actually cares about his patients!!! He takes time with them... I mean really, how many neurologists actually give their patients their personal cell phone number to use when ever they need it??? NONE that I know of - well except for MINE!!! Yeah, that's right Y'all, be jealous!!! I have the BEST neurologist in the whole damn COUNTRY!!! Just kidding... I am sure there are other good neurologists in the country, but I know I have one of the best... I know for a fact there isn't many doctor's that would give their personal cell phone number to their patients to use at anytime if they needed them, if at all any in fact... Dr. Britton is the first one I have ever come across...

     So here I sit, three days later... My whole left side still hurts including my ass-bone... Crazy isn't it??? I still don't know what happened... Yesterday I slept the whole day away - for the most part - because of my Avonex shot on Friday night... I am grateful for that... I didn't feel too much pain because of having the bed to myself the whole day... That and I was flipping around for the most part from the head of the bed to the foot of the bed - on and off of my right side... My family kept coming in my bedroom checking on me periodically during the day; either making me eat, making sure I took my meds, or just checking to see if I needed anything, so I would flip around... Gotta love my family though, at least they care enough to make sure I am okay during the day when I am "sick" because of my shot... It surprised them, I am usually down stairs by 11:30 - 12:00 noon on my shot days... But for some strange reason, yesterday I was down all day... Must be my body trying to heal from the fall... I don't know... I do know it was a strange day for both me and my family... I feel better today, still sore, but better... My neck still hurts like hell causing me issues with my hands and arms - muscle spasticisticy, but like I said I have that appointment with Dr. Britton on the 31st... It has taken me almost an hour to compose this blog - crazy as it may seem - because my neck has caused my arms and hands to spasm so I have to take many breaks... Oh well, such as life with MS right??? I suppose so... It's a crazy way to have to live, but it's the way we have to, huh??? Oh well... Grin and bear it... Suck it up buttercup... What ever other slang definitive you want to use... I guess that is what I have to do...

     It's one of those times when I would just like to scream in someone's face, "Ya know what, I HAVE MS! It's kind of hard to just suck it up and deal with it... I deal with pain every damn day of my miserable fucking life!!! Why in the hell should I have to deal with pain caused by my falling out of bed!!! Do your damn job man and figure out what the hell is wrong with me... It's more than just bumps and bruises, sprains and strains... I really messed up my neck!!!" But of course, I am too nice of a person to do such a thing... Maybe I shouldn't be so nice... I should scream in these peoples faces!!! I mean really, it is their jobs... But, my neurologist will take care of it... Okay, so my life isn't as miserable as I am making it out to be... Just like most of you MSers out there I have my ups and my downs, my good days and my bad days... We are all entitled to have a day or two where we feel sorry for ourselves - or want to scream at the world... I don't feel sorry for myself,  per say, but I am kind of mad that people who are supposed to be medical professional do not pay attention when you tell them what is wrong with you... So now I have to wait to see my neurologist because there is no way in hell I am going to go back to the ER, not just to be told that I am just battered and bruised, strained and sprained when I know something else is wrong... EVEN if it means a trip into the dreaded MRI machine again - UH OH, good loopy drugs!!! YAY!!! NOT!!! LOL... So I am venting to all my MS friends who totally understand where I am coming from... I will just keep on smiling because that is all I can do...

Hugs and Smiles to all <3 :)

My Own Best Advocate!!!

          It has come to my attention - something I hadn't really paid attention to before... Call it an epiphany or just a "smack in the face" realization or what ever you choose... However, I was reading some of my "MS Buddies" blogs and there isn't a single Realistic Face for those who are suffering with Multiple Sclerosis (MS) in advertisements for medications OR in "our" literature... Now, how on EARTH do those who are expecting to get funds suppose ANYONE is going to feel compelled to donate their HARD EARNED money to a foundation or charity who is not PROVING they need the help... "Our" plight - those who suffer DRASTICALLY with the  spastic muscles, the pain, the HORRIBLE insomnia, the problems with B & B (Y'all KNOW what I am talking about), AND the problems with being able to walk or EVEN MOVE - is not something that should be shown by models who are "Up and At 'em!" and able to move easily!!! So I have come to the conclusion, instead of sitting back and bitching about it - I am going to take a "stand" and do something about it!!! I am going to be my own - and my "MS Buddies" best advocate... I am not only going to speak out to everyone I can about this, I am going to write to drug manufacturers, the MS foundation and anyone else I can think of!!! We need to have Realistic Models to call attention to this dreadful disease that is crippling us all that suffer from it... SO, with this said, I AM CALLING ALL that suffer from MS out there on my friends list - EVEN IF YOU DO NOT SUFFER from MS, but KNOW someone with MS - Please, take a "stand" Tell people YOU are NOT going to take this "Sitting down" anymore!! YOU'RE the REAL FACE of MS!!! You're the REALISTIC DEMOGRAPHIC of what is actually happening!!! Who else is going to be your own best advocate other that YOU??? IF you are not willing to speak out for YOU, who else will???

        I have to admit, I am not THAT bad off - YET... However, I have my days where I feel like I can't move a single muscle without pain and spasms... I have known and loved people who have not been part of "their" demographic examples of "our" disease - MS... People who HAVE a VOICE, but not the ability to move, anymore, by themselves... They are fully dependent on others to move them to the bathroom so they can use it, to wash them, to feed them, to do EVERY SINGLE daily living skill or NEED for them... I lost my grandfather before I even got a chance to know him - as I was too young to remember him - due to complications all thanks to HIS MS... That was in 1971... These individuals deserve to have their voices heard!!! All those who are too shy to speak their minds, DESERVE to have their VOICES heard!!! SO, I have decided THIS is the reason my life has taken this course and the REASON I developed Multiple Sclerosis... Yes, It very well may be just part of the Human Condition that we are all born, we all have a chance of developing certain diseases, and we ALL DIE - as it IS part of the HUMAN CONDITION... However, I am a STRONG INDIVIDUAL with a VERY STRONG WILL and EXTREMELY STRONG DETERMINATION!!! I WILL MAKE A CHANGE!!! If this is the reason why I developed this horrid disease so I may know and understand - to speak out with a pure understanding and so I may speak the honest truth, SO BE IT Lord!!! I will do so!!! With God's help and His hand in mine, I WILL make a DIFFERENCE!!! I WILL tell my story!!! I will do what ever possible to make "them" realize "their" mistakes!!!

         This is my solemn vow to you my "MS Buddies!!!" I swear to you, I will do what I can!!! However, I also need YOUR help... YOU MUST be your own BEST ADVOCATE as well... IF you feel something is wrong - SPEAK UP!!! Even if it is with your doctor... Trust me, THEY do NOT always know best... Just because they are a "doctor" - THEY DO NOT KNOW YOUR BODIES!!! Only you do... It is your body, your health care, and YOUR RIGHT!!! You can DEMAND any tests you feel is necessary... Even if your doctor doesn't feel so... You can DEMAND to see ANY SPECIALIST... Even when your doctor doesn't feel it's necessary... You have the RIGHT to review YOUR MEDICAL RECORDS and RECEIVE a COPY of any part or the whole thing IF you so choose... You have the RIGHT to DEMAND a second opinion at ANYTIME... You have the RIGHT to REFUSE any tests you deem unnecessary... YOU have to be your own best advocate my dear friends... This is something I have learned the HARD way - after a needless week in the cardiac wing of Robert Packard Memorial Hospital in Sayre Pennsylvania when all I had was Pleurisy... Trust me, it was retarded, ridiculous, and a very long story why I was there... I should have fought, but I thought the ER doctor knew what he was doing... NEVER again will I put the trust in doctors like that again let me tell you... UNLESS of course it is my OWN Dr. Scott (my family doctor) or Dr. Britton (my neurologist)... However, even with them, I still stand my ground and tell them exactly how it is...

       I REPEAT, YOU HAVE to be YOUR OWN BEST ADVOCATE... I can not say that enough... I would shout it at you if I could or thought it help get my point across...  I think this applies to US (those with MS) now more than ever...

Hugs and Smiles to all :)

Frustrations with Pharmacy!!!

OMG! If I wasn't a more pleasant person with such a nice disposition I tell you what, THAT pharmacist would loose his nose because I certainly would BITE it OFF!!! UGH!!! I am so MAD, I could spit NAILS!!!

Okay, so here is the reason why I am so frustrated... Last week, I was told to call my neurologist by my family doctor because I have been having a whole lot of issues with my back and legs as of the last oh say 2-3 months... My back muscles like freeze up at night causing my legs not to work in the morning - AT ALL... I can not flip them out of bed, I can not sit up by myself, I can not get out of bed without help, much less start walking without assistance... So, My neurologist prescribed Baclofen 20 mgs for me to take at bedtime and I am to take the Baclofen 10 mgs twice a day still... Meaning, I am to take 40 mgs of Baclofen a day... WELL, the damn pharmacist didn't even TRY to send the 20 mg prescription through to my Insurance because he JUST filled my 10 mg prescription a few days ago... HE wanted me to double up on the 10 MG at night, NOT thinking that I MAY have to continue taking the med twice a day as of yet... Instead, HE just told me to double up, not even try to send it through, and just let it go... YEAH, doesn't work that way buddy!!! I know WTF my neurologist told me to do with MY MEDS and MY HEALTH!!! Do your JOB ASS-MUNCH and DON'T TRY AND PLAY SOMEONES DOCTOR!!! UGH!!!

Needless to say, the pharmacist feels like a jack-wagon now and is filling my prescription for the Baclofen 20 mg... I called my Insurance carrier and found out what was going on then called the pharmacy and told him exactly what to do... I really do not think he liked that I was not going to play his games and know exactly what to do... Yeah, I am not as dumb as I look or as dumb as people think I may be... Sure, my daughter may have to get my medication for me, but she tells me exactly what is said... I WILL call my insurance carrier and find out the truth of the  matter... IF there is a problem, I WILL get it taken care of IF there is a medication that I NEED!!! Geesy peasy, I live with enough pain and BS because of the MS... Any and ALL relief I can get, YOU BET I am going to take it!!! Come hell or high water!!! Seriously, WTF do these people think??? I mean really??? I mean it's a holy SFD moment... For those who don't know what a "SFD moment" is let me translate, but please forgive my language a second... A "SFD moment" is a "Shit, F^*k, Damn moment..." Sorry... You were pondering and you know it... LOL... I don't usually swear, but seriously, really - Really - REALLY??? Come on!!! Dude!!! Its just BS that people think they can dick us around like that... I am so tired of it... It's not like I am using and abusing my medication or some stupid crap like that... It's enough to make my head hurt!!!

Curiosity killed the cat - or so to speak...

I just have to wonder if I am one of the only people with MS that has to fight with his or her family about eating??? They are always trying to push me to eat when I am not hungry... I have never really been a big eater. I am a strong believer, that IF I am hungry I WILL eat! Just leave me alone until I want to eat and don't try to guilt me into doing something I don't want to do. Every single day, my family tries to get me to eat meals or what ever. Continually asking me, "Are you hungry? Do you want me to get you something to eat? What do you want to eat?" or saying to me at some point "YOU have to eat now! No excuses, YOU are GOING to eat!" One problem, I am not hungry. If I am not hungry, I have problems eating food!!! It's like my body is resisting. I either get the hiccups or I aspirate (meaning food gets in my bronchial tubes or wind pipes) on what I am eating.

So, does anyone else have this problem of not being hungry when most "normal" people would be hungry?

Something else I wonder about is insomnia... Is this just me or do others suffer from it as well??? IF I sleep 3 or 4 hours a night I am doing really well... The only day (night) I rest really well is the night I take my Avonex shot... I sleep like 12 hours straight... I do NOT nap during the day. IF I do nap, it is only a 20 minute cat nap and that is very RARE... My daily regiment of medications make me groggy, yet I can not sleep... Neurontin, Baclofen, and Topamax all have warnings of drowsiness - which they do with a vengeance!!! BUT no rest for the wicked, must be... Not to mention the every day fatigue that is brought on by the MS alone... I feel so tired sometimes I could break down and cry, yet I don't... I keep my chin up and my mood light and smiley some how... By God's grace, I swear, it has to be...

So, does that happen to anyone else??? Or am I just the freak of nature that I think I am???

I read blogs and numerous studies where people with MS are affected so badly by the heat... YET, I CAN NOT handle COLD... I THRIVE in the HEAT of summer... I am talking HEAT - temperatures of 65 degrees and above... Even 110 degrees does not bother me a single bit!!! I am moving around like a teen-aged kid... Running to the lake to go swimming with my kids - okay not literally running, but you know what I mean... However, once the weather drops below 65 degrees, I am in TROUBLE - and I do mean quite literally!!! My muscles start getting stiff and it gets hard to move, even when I want to... My family doctor and neurologist can't figure this out because everyone else they know that has MS complains about the opposite...

So, am I the only "weirdo" out there like this??? That thrives in heat and does poorly in the cold??? 

These aren't sudden symptoms... I have had these all along... It's just something I have had to ask because my daughter and I just got into a spat over me not wanting to eat lunch yet... I didn't eat breakfast and it's like almost 3 and I don't want lunch... She is just being a worry wart... I have to laugh because it is one of my personality characteristics she kind of picked up along the way... 

I hope someone will write back and let me know if it is only me or if they also go through symptoms much like what I am experiencing... I certainly would appreciate the feedback!!!

Hugs and smiles :)

Jen

A New Granddaughter

Wednesday May 9, 2012, my son Micheal and his wife Shoni gave birth to our granddaughter Lillian Rannee Krause... She is so cute...

This beginning of life and a visits from our grandson Scotty are the pleasant reminders and reasons why I need to continue with treatment each week... Even when I am starting to feel like the treatment isn't working anymore... I have had some weird and scary developments over the last couple months that I have just pushed off to the sidelines... I am not sure if anyone else has experienced these or not... I know I am scared shitless for the lack of a better example... Let me explain...

Development 1: vibrations that last all day long... I feel like I am literally standing on a washer that is on spin cycle and spinning like a bat out of hell OR I am standing right beside a jack hammer that is constantly running vibrating the whole area where I am... VIBRATING is the only way to explain how my body feels because it feels like if you put your hands on top of a running spin cycle washer...

Development 2: this is the most scary... At night, if by chance I roll onto my back, I can not get up out of bed by myself in the morning... I can not use my legs because I can not make them move... It is like my all the muscles in my lower back has seized up, freezing the muscles in my legs as well... I have to have my husband help me to sit up and swing my legs off the side of the bed then stand up and start walking... Once I am up and started going, I am okay and am able to maneuver the floor and stairs by myself... It is still scary though... I don't like not being able to get up by myself... I am an independent person... I realize it is okay to ask for help, but I would rather do for myself... It takes forever to get going in the morning because of it... It really drives me NUTS!!! It is like my body is giving up on my mind and soul... I can't figure it out!!! Especially when I am doing what I have been told to do by my doctors!!!

I am NOT going to give up this damn easily!!! I have my new granddaughter to spoil!!! I have my grandson to continue to spoil and do things with... I am not going to ALLOW my body to betray me like this!!! I AM GOING TO FIGHT!!! For my family's sake and for my own... I don't know what I am going to do just yet, but I am going to figure it out some how... I think our little Miss Lily and our little munchkin butt Scotty is worth it!!! I WILL ALWAYS fight the good fight and keep praying for God's help!!! I have faith He will answer my prayers!!!

Back after a year...... :)

     WOW! It's been over a year since I have last posted an entry to my blog... That is hard to believe... Then again, with everything that had been going on it isn't... My health, adjustment to medication, family (children) issues, OMGosh what else...

     First things first; my youngest son got married January 2, 2012 to a wonderful girl who completes him and keeps him in check... That is a good thing... They came to us back in November of last year and told us we were going to be grandparents again - their first... Well, we were concerned because of their ages; but I know they are going to be great parents and make it for a lifetime together... They just have that defiant determination and willpower to prove everyone who doubts them WRONG!!! Our granddaughter Lillian Rannee (pronounced Renee) is due to be born soon... I am so excited... I just know that Mikey and Shoni are going to make wonderful parents... Mikey was always excellent with Scotty - my oldest son Jeffrey's son... Any child or baby actually, Mikey has always been great with... He just has that way with children...

     My eldest daughter was finally diagnosed with Asperger's syndrome... I have been telling the doctor and everyone there was something else wrong besides what she had been diagnosed with... No one seemed to want to believe me... Until, I finally printed off the diagnosing symptoms and highlighted every single one I saw in Krissy... It also helped she knew I had been studying psychology in college before having to drop out due to the MS symptoms... She had read my research report I did on Asperger's syndrome using my daughter as my case study for misdiagnosis and how other symptoms can mask the Asperger's syndrome... Helped make my case I think...

    My health has had it's ups and downs; as I am sure anyone with MS can understand... I don't know what to do about the vibrations that I am currently suffering from, which seem to get worse at night when all is still and I am laying in bed flat on my back... I can't stand it!!! My legs make it feel like I am laying on a vibrating bed you find in a sleazy motel... I can't stand it... My neurologist's CNP wants me to go have a sleep study done because I do not sleep well... She asked me about snoring; yeah well, there is snoring - BUT it isn't me... My husband SNORES like a chain saw running most of the night... Granted when I am sick or my allergies (which by the way are HORRIBLE this year) are flaring up, I do snore slightly; not enough to bother my sleep IF I am alone... MY HUSBAND on the other hand, snores like a fright train - unless he is on his side... Drives me NUTS!!! The vibrations in my legs, his snoring, and any little bump in the night, well it just does not constitute a good night sleep for me... I am not a sound sleeper - unless I am totally exhausted, then I just pass out cold... Yet, she wants me to take a sleep study... It wouldn't be an accurate sleep study unless it was done in my house because I would sleep like a baby in a quiet dark environment... Oh yes, I forgot, John has to sleep with the TV on ALL the time!!! Yes, there are studies that indicate that TV's that are left on ALL night are not conducive to a good nights sleep... Let me tell you, those studies have been done by researchers and published in AMA (American Medical Association) and APA (American Psychological Association) recognized publications. These studies are not just whistling Dixie either... It is the absolute truth... One can not get a good restful nights sleep with the TV on because the mind remains stimulated by the light from the set and by the sound from the show. IF I turn it off when he falls asleep, he turns it back on when he wakes up during the night... UGH, I can't win... So, I just deal with it... I have shown him report after report, flyer after flyer, study after study He reads them, but still doesn't pay any mind to them... I have told him about it and that it's the reason why I don't sleep well, but still...

     So that is what has been happening in my life lately... One nice thing, the Avonex seems to be working well... I have only had to use the power chair a few times since I have had it... I haven't had to use my cane at all - well I refuse to... I have days when walking is hard and painful, but I force myself to do it anyway... I will NOT be stuck in a wheelchair at the age of 42... I am NOT going to just give in and let this beat me... NOT yet... My hands give me the most trouble... They make it difficult to drive and I have to stick my hands threw the steering wheel so I can maintain control of my van because I don't have the strength in my grasp to hold the steering wheel correctly... Thank God, I am a good driver and watch everything... I wish there was an easier way to drive, but one does what they must... I just don't drive far with out another driver with me - just in case...

    I hope all is well with everyone else... Take care all and be safe!!! HUGS and SMILES!!!

Power Wheel Chair...............

Well today my power wheel chair was delivered... Exciting, but depressing at the same time... It is hard to come to grips with the idea that it is really hard to walk at times... It is hard to come to grips with the idea that I can not push a manual wheel chair myself... It is hard to come to grips with the idea that I do not have the coordination to use a walker... It is hard to come to grips with the idea that it just isn't safe for me to use a cane when I am alone... It is even harder to come to grips with the thought that it isn't safe for me to be alone anymore because of falling down and not being able to get back up by myself... I don't understand why the MS has affected me so quickly when I have done everything I was told to... I started treatment right away... I take my medication as I am supposed to... I started the Vitamin D supplement treatment - 2000 IU, 2 in the morning, 1 at 2PM, 1 at 8PM... I also started taking DHA supplements, CoQ 10 supplements, and Vitamin B complex supplements... I haven't changed my eating habits because I have always ate healthy... I do not eat boxed foods - foods that are considered quick foods like Kraft Macs and Cheese... Every thing I eat is home made, even my spaghetti sauce... Granted I use the canned tomatoes, but they have very little preservatives in them and NO dyes.... My meats we buy from my father-in-law; they do not - have not - and will not - be fed growth hormones and are what they call "free range" animals... Fresh fruits and veggies... The whole spectrum of healthy eating habits... My only vice is Sprite and coffee... I do not use fake sweeteners - I use real sugar... Those artificial sugars are not good for you - PERIOD! They can actually cause you all kinds of health problems... Just not worth it in my book... I will keep using my 16 calories per tablespoon real sugar... Corn Syrup (sugar) and Real sugar have gotten a bad wrap for the last 10 years, it isn't funny... However, I am here to tell you - these two sugars are no worse for you than real butter is - as long as it is used in moderation and the calories can be burned off just as quickly if you sweep and mop your floors... Give me a break and get real people... It's all scare tactics used to get you to use these fake sugars which are WORSE for your body!

Okay now I have went off my course of what this blog was going to be, but this is something that is important to me... Just as important to me and dealing with my MS while I was researching... Fake foods, oleo (margarine), Sweet-n-Low, Equal, any fake sugar, trans-fats, many of the preservatives used, and these egg replacements are NOT good for you when you have MS... They take away from the nutrition values that you need... They put things in your body that you can not process because your body is already fighting against it's self... These products only do you more damage than good... You need to stay away from them and treat them as if they are a disease themselves... Okay so your grocery bill is going to take a hit and be a bit more expensive - BUT isn't your health worth it???As long as you are exercising and eating in small meals 4 to 5 times a day, you will be fine! Healthy Homemade meals... No pre-made or boxed crap... Want macs and cheese - I have a great recipe for home made and it only costs about $7.00 for 2 pounds of it (US dollars)... It is creamy-dreamy cheesy yummy goodness!!! It is homemade!!! The only boxed is the noodles... But they are whole wheat and nutty yummy... Email me and I will send you the recipe -FREE... Spaghetti sauce - I make enough to freeze - costs me about $20.00, BUT I also get 4 gallon bags to freeze and dinner for 7 (with left overs for 7 people + 2) out of the stock pot... Not bad for $20.00 bucks if you ask me... Same as the macs and cheese - email me for recipe... My great-gram always said "gooda food is something to be shareda with lova and friendship... It cana win a mans hearta... It can bringa familia together... But always puta your hearta in your creations..." Gram was from Italy... She came to America in 1917. She loved this Country almost as much as she loved her husband and her family... I was lucky I got to meet and spend so much time with my great-grandma, learning from her the values of good food and how to cook... It tickled me that some words still had an "a" at the end when she spoke, but some how it drove the point home... Good homemade food can never be replaced by fast convenient boxed food - especially now... I find if I eat boxed convenience foods - the MS acts up and I have problems... So I am passing this tid-bit of information along to anyone who wants it... Eat only real food - foods that if your great (or great-great) grand - mother wouldn't recognize them as foods don't eat them... Real sugar will not hurt you, real butter will not hurt you, real eggs are better for you than fake ones, real milk has more vitamins and nutrients than soy - unless you are lactose intolerant... If you exercise and eat in moderation - you will not get fat or gain weight - eat well balanced meals - meats/proteins,  pasta/carbs, veggies/fruits and water...

Okay, I feel better now about getting that off my chest... I had someone tell me I wasn't eating right... Yeah, Okay... They live in my house and see what we prepare... The spices I use help to combat some forms of cancers and other things, but I don't know what I am doing... Sure... But they are eating fake sugars that cause cancers, diabetes and other health issues... They have eliminated all meats from their diet - can't do that... Our bodies need the proteins from the meat and that is a proven fact - scientifically... Ugh, It aggravates me when people try to tell me what to do when I am already eating healthy... I even went over my diet with my doctor and she was impressed... I just wish people would learn how to butt out sometimes... I understand that they think they were trying to help, but...... I feel bad enough sometimes, I don't need advice when it isn't asked for...  

It's been a while. April 1, 2011

HAPPY APRIL FOOLS DAY! I guess my body has been building up it's surprise for me... Here it is 1:11 am and I am wide awake - AGAIN... It is the 6th time since my last blog posting - what St. Patrick's day? That I have had a sleepless night... I don't know whether it is because of spring fever, I know warm weather is on it's way and I can't wait for that - OR, if it is because of the stupid muscle that runs up the side of your shin that has been spastic and the muscle on my shoulder that has been spastic (almost feels like an unborn child kicking in a woman's womb) that makes my whole right arm tingle like lightning! These two muscles are getting on my last nerve and are about ready to put me in the nut house... My family is patient with me, but I have been awful nasty with them... Very short tempered, and I don't mean it at all... My legs haven't wanted to work, they feel more like jello than anything - and I am at wits end with this whole mess!!! I have absolutely no patience with myself nor the way my body wants to act... I am so tired of sitting all the time because I am too afraid to walk because I am too afraid to fall down AGAIN... I fell a few days ago, didn't even have enough warning to reach out for anything... Then I didn't have enough strength in my legs or arms to pull myself back up to a standing position where I was at, so I had to crawl on my hands and knees like a baby through the kitchen out to the living room to and on to the couch... How embarrassing - 41 years old and have to crawl like a baby!!! I was mortified!!! No one was here to help me... My husband was at work... My eldest son was out recruiting for the company he works for... My girls were out walking the dog... My youngest son isn't living at home right now - long story... And Courtney, well she took off with Scotty somewhere, I don't know where, after the girls had left with Bear... Needless to say, I was alone... Something, that I should not have been... I really hurt my tail bone, and it is still hard to sit straight up... BUT, life goes on doesn't it??? I am not Courtney's responsibility, but she should have let me know she was leaving... I would have taken precautions IF I would have known I was going to be alone... John was not a happy camper when he found out I fell, neither were the girls... I just look at it like - oh well shit happens doesn't it?

Anyway, my ear infection seems to be all healed now - wonderful!!! I just wish I knew why it is that I spend so many sleepless nights... I am always in so much pain, but the medication that I am given for the pain, well... Besides me not wanting to take it because of it being addictive - Percocets, they make just don't seem to help... Not to mention, I feel like I drank a gallon of cappuccino!!! Holy Cow, if anyone remembers Beavis and Butthead from MTV - Let me tell you what, I am WORSE than Butthead on Cappuccino!!! If I take those prescribed Percocets!!! It is horrible!!! Not to mention, they make me feel like my skin is crawling - I start itching like crazy!!! I don't break out in hives or anything so it isn't a true allergic reaction... It is just that, it's like my skin drys out and starts itching because it is like a dry skin itch; as soon as I put lotion on, the itching goes away... Weird isn't it??? It has to be because it is an opiate or something... This brings me to something else...

I was watching Dr. Oz on Tuesday I think it was... Montel Williams was on and they were debating on whether or not marijuana should be legalized for medicinal purposes... Why and what does Montel Williams have to do with it? You ask... For those who do not know, Montel Williams also has MS and uses marijuana to control his symptoms - the chronic pain, muscle spasms, sleepless nights, etc... Interestingly enough to me, 15 states already allow for medicinal marijuana and 12 more have started legislation to allow for it... Montel said that if it wasn't for the marijuana, he wouldn't be able to be a productive member of society... It has given him his life back and his ability to do things that he was losing very quickly... I can sympathize with him there and know exactly what he means... I have lost so much already since 2007 when I first started noticing the symptoms and the long road to finding out what was wrong with me... I had specialists more or less telling me it was all in my mind; that there wasn't anything wrong with me... Well BULL SHIT!!! There was something wrong with me, I know what MY BODY WAS telling me... Thank God Dr. Scott listened to me and KNEW I wasn't full of shit!!! I wish Pennsylvania would allow for doctor's to write prescriptions for marijuana... Granted that isn't how it is done, but if they would allow for it - they should have to write prescriptions for it just like the do for any other drug - Morphine, Percocets, Vicodine, Oxicodone, or what ever else doctors can prescribe for us... It should be gotten right from a pharmacy... Cocaine used to be used as a medication as well... Sigmund Freud came across it and was actually the first to apply it in psychiatric practice for depression - and became addicted to it as well... it is a true fact!!! Now, go figure, It is an illegal drug!!! BUT, there are medications that are given to children (and adults) that are a derivative of this - Ritalin - to "help them concentrate." I have been doing a lot of research lately on the subject, and frankly I would have to concur with Montel... I really wish something was out there that would help... Yes, I know let me hear it... Let me hear all the governmental scare tactics that have been spewn into our brains for the last 40 + years... I know them all!!! However, I thank God that I have a father like mine... He teaches the truth about things - not scare tactics... When it came to the drugs & alcohol talks when I was a teen, He gave me the statistics, information, and let me come to my own conclusions about things - hence teaching me the truth NOT bull shit scare tactics... I never tried drugs OR drank under age because he gave me the information and statistics... All I can say is, Thanks Dad for educating me the right way about things like this...

So, Lets see... There are two drugs - possibly three I could quit taking IF marijuana was legalized for medicinal purposes... Hello, maybe even all four!!! Since it is supposed to help with migraines as well... So that would actually be six medications I wouldn't have to take any more!!! Holy jumping Jehoshaphats!!! Wouldn't that just be the cat's meow!!! No more Neurontin 300 or 600! No more Percocets! No more Flexeril! No more Topamax! No more Promethazine! No more Imitrex! That would just be wonderful!!! Ugh, I guess I will keep dreaming and keep taking my medicine... Taking the risks that are associated with taking these medications, what ever they may be... Until the time comes...

I know this is a hot button issue, but it is one that needs to be addressed... We live with so much crap - don't we deserve to be pain free - muscle spasm free WITHOUT having to worry about other medical complications from the medications that we are prescribed to alleviate the symptoms we suffer each and every single day??? Our treatments - Copaxone and Avonex just to name a couple - to keep the MS at bay or in remission are enough... Do we really need to have to worry about other meds causing us complications too, just so we can live some semblance of a normal life??? I think not!!! Marijuana can be made into teas, drinks, foods, or vaporized (like as in a nebulizor) and are just as effective as if it were smoked... So, why not try it? I am game, but then again I smoke cigarettes... My one and only vice in this world... Yes, it was my choice even after reading the literature my father gave me... I am so sick of taking all these damn pills on top of this shot every week!!! It is bad enough I have to take my thyroid pill every day, but having to take pills three times a day - four times on Thursdays - is getting on my nerves... I hate it!!! I am so sick of it!!! I am even sicker of choking on the damn things - aspirating on them...

Well, I am done for this early morning... I hope that y'all who read this understand where I am coming from and post comments about how you feel on the subject...

Hugs and Blessings

March 17, 2011

Well, Happy Saint Patrick's Day everyone!!! It's "Kiss me! I'm Irish" day... This kind of always bothered me for some reason... Even people who weren't Irish always wear these stupid t-shirts and it always makes today, something that is supposed to have serious sentimental meaning - cheap and silly... Granted celebrating - parades and the such - today is traditionally an American invention started in Boston in 1762 as a way for Irish immigrants to remember their roots, it is just bothersome to me that it has to be exploited and cheapened like many holidays or celebrations... I guess I am just too sensitive or something, being I have Irish roots in my family tree... I don't like that something that should be serious and should be celebrated with joy and festivities in a traditional way - not getting plastered and making it cheap... I always have turned my nose up at those t-shirts and ignorant items that make this day seem like something of a joke...

Okay so now that I got that off of my chest, I suppose I should explain what has been going on lately... 

Saturday March 12 - John took me to the emergency room because my ear hurt SO bad I was actually crying... That is a big deal because living with MS you learn very quickly how to deal with pain... Life IS a constant cycle of days of whole body pain then days of no pain at all... When we got there, I told them that my right ear hurt on a scale of 1 - 5, around a 4. My left ear, had fluid in it - I could tell. When I tilted my head to the left, the fluid sounded like it wanted to come out, but didn't... I could feel it... It was like I went swimming, got water in my ear, but didn't get it all out after I got out and dried off... We started going over my medical history... I told them I have MS... The nurse just looked at me, so I repeated myself, "I have Multiple Sclerosis, um MS..?.." So she wrote it down... They asked me if I had been running a fever... "um No, I never run fevers... Do I John... Most of the time I never know when I have an ear infection, Dr. Scott has to tell me... I go in for one thing, she checks my ears and says 'Um, Jen sweetie, This ear is really angry. It is really red!' So, that is how I find out that I have one... But this time is different! This REALLY FLIPPING HURTS!!!" So, turns out yeah I was right... My right ear is all kinds of infected and my left has fluid in it - just like I told Dr. Ted when he came into the room... Kinda like a Dur Dur Pop Tart moment if I ever saw one...

Sunday was my birthday... I felt like crap because my ear hurt... Angie made me a birthday cake - God bless her sweet heart... Courtney and Angie made dinner for the family - we had pork roast, home fried potatoes (recipes to follow), candied carrots... They did a wonderful job!!! However, it was an extremely quiet day because John slept ALL day... Krissy stayed in her room "cleaning" it... Jeffrey, Courtney, and Scotty stayed downstairs in their little "apartment" straightening up... Angie was "cleaning" her room as well, until it came to making dinner... I guess it was because I was dosing off all day too... I can appreciate that, seeing that I didn't sleep at all Thursday night nor Friday night... Saturday night I slept like a baby, but Sunday I was still trying to catch up on sleep... My ear still hurt REALLY bad...

Monday March 14 - Okay, this is plumb ridiculous!!! I slept maybe 4 hours if I was lucky... My ear hurt so bad most of the night... It kept waking me up... I was up and down all night long!!! I called Dr. Scott's office to see if I could get an appointment because I just could NOT keep going like this... The lack of sleep is not good for me... I am going to get sicker or something... No appointments until Wednesday and Dr. Scott is not in at all... So Kim - God bless her - talked to Kelly (the nurse practitioner) about what was going on... Kelly called in a prescription for ear drops to the pharmacy... Oh great!!! This is going to help, I know it! Otherwise Kelly would have made them schedule me in some how - if she had any doubts... So, I gave it an hour and sent Krissy up to the pharmacy to get the medication for me... OMG, they didn't have it yet... 
2:30 pm - The pharmacy still doesn't have my prescription yet... This time I was smart and called... No sense in sending Krissy out if they don't have it... And they didn't... So I lay down on the couch thinking I will get a call anytime to go pick it up...
3:30 pm -  The pharmacy still hadn't called, so John called up as I was napping comfortably... No pain - thanks to a Percocet and being totally wiped out!!! The pharmacy still hadn't received the prescription - not by fax, email or phone call... So, John called the doctor's office. Kim told John that Kelly sent the prescription over very early that afternoon - practically right after Kim called me back to let me know what Kelly had said... John called the pharmacy again, still nothing and made it seem like he was lying about what Kim told him... Yeah right... That would be Buchanan's Pharmacy for ya... This isn't the first time this has happened to me with them either!!! 
5:25 pm - I get a call from Buchanan's Pharmacy, my prescription was in and filled... Yeah, they finally found it - they took the time this time to look for it - that's all!!! So, Krissy went up and got it...

So, that brings us up to today... I am still having trouble with my ear... It still hurts; however, it isn't as bad as it has been... I am praying that it gets better soon... It hurt so bad for so long that the whole side of my head and the ear is tender to the touch... Isn't it funny how a silly little ear infection can cause so much irritation to your head... The lack of sleep has been causing me some minor memory issues... I forget to do things, simple things - like eat... I don't know if anyone else has this problem or if it is just me, but I just don't seem to get hungry very often... It is like that little trigger that tells you that you are hungry and you need to eat has been turned off or something... IF it wasn't for my kids, half the time I would go all day without eating... I just don't seem to get hungry and I don't know why... Then again it is winter time and I do not go outside... It is hard for me to get exercise because the cold throws me into a tailspin... I hurt so bad all the time and it is so hard to get motivated to do anything in the cold because I am so stiff and uncoordinated... Maybe that is why I do not get hungry... I don't know...

Anyway - Recipes as promised:

Home-fried Potatoes

1 medium potato per person - peeled, diced, and boiled until fork tender (like for mashed potatoes)
1 tsp sea salt
1 tbsp Parsley
1 tbsp Basil
1 tsp Oregano
1 1/2 tsp Thyme
1/2 tsp Ginger
1 tsp Garlic powder or 1 tlbsp minced garlic (can get at store in Fresh Veggie section)
1 med Onion - Red onions go nicely - diced
EVOO - Extra Virgin Olive Oil - the darker green the better...
Black Pepper to taste


While you are waiting for your potatoes to boil up to fork tender, peel and dice your onion... In a large, deep sided frying pan, run your EVOO around the pan about 4 times (it's approximately 2 or 3 tbsp of EVOO) - turn on pan to med heat to warm oil. Saute onion until tender. Add garlic (minced, fresh (about 3lg cloves-grated), or powder), Parsley, Basil, Thyme, Oregano, and Ginger to wake up their flavors - stirring constantly for about 2 minutes. Add potatoes, sprinkle with about 3 more rounds of EVOO - Stir... Sprinkle with salt and pepper to taste...


Mom's Candied Carrots

2 large fresh carrots per person. Gage amount depending on carrot size - should equal out to be 1 1/2 cups per person...
1/2 stick of REAL butter (unsalted)
1 tsp REAL vanilla
3 tbsp light brown sugar


Wash and scrub off the skin of carrots. Slice carrots into slices that are consistent; use a slicer if you have one making it easier. Place in a sauce pan with enough water to cover. Boil until fork tender - Drain. Melt butter in the same pan you cooked the carrots in. Add the tsp of vanilla and brown sugar to melt together; stirring constantly. Add carrots to reheat and coat with "candy." Use sea salt and pepper to taste... For a special twist, add sliced almonds or walnuts and dried cranberries... These add nutrients and vitamins we need as well as a delicious surprise....


Pork Roast Rub


1/4 cup EVOO
1 tsp sea salt
1 tsp Thyme
1 tsp Basil
1 tsp Pepper
1 tsp Ginger
1/4 tsp Nutmeg
1 tsp Rosemary
1 tsp Cumin
1 tbsp Balsamic vinegar


Cut some of the thicker pieces of fat off of the loin and dispose of it... Fat YUCK, it isn't good for you!!! Take the knife and poke holes into the loin all over as so the rub will get down into the meat... Stir up the rub so the vinegar is well incorporated into the oil (these will continually separate)... Pour the rub into a gallon sized freezer or storage bag (freezer is best because it is heavier duty) and place the pork loin in the bag as well... Make sure you close the bag up tight, expressing most of the air... Shake and rub the marinade into the meat while in the bag - this little trick makes it easier for you (I have troubles with my hands because of the MS) than to try and brush it on or rub it on with a basting bulb and a spoon... With the loin in the bag, you can lay it on the counter and roll it back and forth rubbing the marinade in to the meat that way... Don't even have to pick it up really... Leave in bag - rubbing frequently - for an hour or more depending on your desire - bake at 350 for 2 hours in a covered baking pan... Will be moist, juicy, and mighty tasty...


Well, this is all I have to share today... Happy St. Patty's Day everyone!!! Enjoy the recipes...


Hugs <3

March 10, 2011

So this is a late one... It is almost the 11th, but for now it is still the 10th... This cold is really beating me down physically... I didn't roll out of bed until 11 am this morning and still felt like I could have slept for another 3 hours... BUT, the damn borough was out cleaning up the snow piles I think because all I could hear was back up alarms and the roar of diesel truck motors... So, out of bed I rolled my tired body... It was really hard to walk today for some reason... I don't know why... The temperature was warmer, but it was raining... Maybe it was because of the rain... "Blame it on the rain, that was falling - falling. Blame it on the stars that shine at night..." Okay so I am dating myself by writing a line from an old Milli Vanilli song... Hey, can't help it - I liked them, lip syncing or not... They had some really good songs... Dang, now I had to go find this song on You-tube...

I am still having trouble with my phone - damn Straight Talk any way!!! They have my account all Messed up - and trust me I am being REALLY nice here!!! I have my old number back, but I can't receive any calls into my phone now... Then the guy told me I didn't have any time for my phone - well let me tell you, I LOST IT!!! I have 20 some days left on my card I bought at the beginning of March, AND a new card that is to be in reserve!!! OMG, lets say I am LIVID!!! A whole week to get this shit figured out and I am still without a phone more or less!!! UGH!!! 

To top it ALL off; tonight is shot night for me, and anyone who has MS and is taking Avonex or any of the Interferon treatments knows what that means...Yeah, I feel kinda flu-ish - like nausea-ish, but I took Ibuprofen and Promethazine (for nausea) so maybe I will feel better in a bit... At dinner time, we splurged and got pizza - nice for a change - I broke a tooth eating what we call the bone - which is only the crust! YIKES!!! So now, my mouth is killing me, right along with the rest of my body... Okay, so the rest of my body pains I am used to and can more or less handle - they are all part of the MS and I have had them for so long, I can just use mental tricks to over ride the pain... However, this pain in my mouth - OMG, I can't deal with!!! The piece of crust was so hard it was like it had something in it... I couldn't even break it pinching it between my nails or cut it with a knife... Now what the hello do I do? It is 7:30 at night and there isn't a dentist open this late at night... I have to deal with the pain all night long!!! I wish I had some magical wand to make it go away!!! I took one of the Percocets that are prescribed for the pain I have in relation to the MS, but it isn't working very well... If I wasn't in so much pain, I wouldn't have taken it because it means - NO SLEEP TONIGHT!!! That is the last thing I need being shot night... I don't know what it is about that pill, but it hypes me up - like I drank a cup of coffee or took some drug like Speed or something!!!


To my friends that I found on Twitter, Facebook, and even here blogging - I received an email from Biogen idec the makers of Avonex. They have a brand new website that offers individuals and families with MS support and individualized support plans to keep you on the right the right track and help with your medical stuff. It is really neat. I went on and checked it out first before deciding to add the link to my blog. I won't ever add any information or websites that is misleading or not helpful to us. It is vital to me that I share information as long as it is only POSITIVE AND HELPFUL. This website is both... Please go check it out for yourself.......http://activesupport.biogenidec.com/PublicHome.html..... 


If you are reading my blog and you ever want to respond to something, please feel free to do so... I will always respond back... If you want to ask questions, know that you will always get an honest answer in return... This blog isn't just for me, it is for you too... We need to support each other in our path through life... Strangers are only friends we haven't met yet...  When I have a good recipe to share I will give it to you here... Please feel free to use it... I only cook with good healthy foods... Nothing from my kitchen is boxed!! My philosophy is If my great grandmother wouldn't recognize it as a food, I do not use it... She never used oleo/margarine so I don't use it... I only use butter, no salt of course... When you have MS, you have to be careful with what you eat - so I am told... Well, I have always been cautious with what I put in my body and with what my children eat... I have always watched preservatives and the such... NO artificial sweeteners - they are worse for you than real sugar is, believe it or not... Not to mention, children with ADHD or seizure disorders should NOT be allowed to eat ANYTHING with any sort or artificial sweeteners in it... It can cause complications with children with these disorders!!! I should know, my eldest daughter has both - I have done the research - statistics are scary...


Well, I suppose I should sign off for tonight... I will try to write again more later today -12:53am right now... Have a blessed day... :-)

March 9, 2011

Well so much for my birthday present from John... He got me a nice new phone, but guess what - can't use it because stupid AT&T doesn't supply cell service in our little area called Elkland... Of course not... So, after 3 days of trying to figure it out - on and off the phone with tech support - and I am talking about hours of being on the phone with them - I finally found out... UGH, I am so fed up and frustrated that I sent the damn thing back to the company... NOW it is a whole new set of challenges... My frustration level is at maximum capacity and John is afraid that I am going to have a relapse because I am shaking and my hands are all tingly and going numb... WTF???

So, being frustrated after following all the instructions, I called tech support again... FINALLY, I got someone who actually spoke without an accent, I could understand, and they could understand me!!! I was so tickled I almost started crying!!! My frustration level is so high that I already have a tension migraine and feel like I want to cry... I told this young gentleman named Christian, that I was so happy that I could understand what he was saying and that my frustration was so high that I could cry!!! I just isn't funny any more... No one was explaining things to me, and if they were - I just couldn't understand what they were saying to me, and it isn't like I wasn't trying to... Okay, these two paragraphs make me seem like I am a total heel or prejudice - TRUST me, I am not either... I am not that type of person, and I believe that ALL are created equal - no matter what... All people are my brothers and sisters!!! We ARE ALL HUMANS by the way... But, I don't like it when I can't understand what someone is saying to me over the phone and I have to keep asking them to repeat themselves... It isn't fair to them and makes me feel like I am an asshole for doing it... Or if I have to keep repeating myself - I feel like an asshole because I feel like I am not explaining myself good enough for them to get it... It isn't a matter of prejudice, it is a matter of communication issues on my part... Now I feel like an asshole for even writing this, but it is a matter of clarifying...

So, off of this for now before I make myself feel even worse about today than I already do... My cold is getting better I think - maybe not... My ears hurt like hell, but I don't know if it is because of infection or if it is because of something else... My left ear feels like there is water in it or something... It is really weird - and feels like it is trying to drain when I am laying on it or I tilt my head to the left... My right ear is starting to feel that way... I am thinking I better be thinking about getting to the doctor if they don't start feeling any better soon... It is really starting to drive me nuts!!!

Monday, the gentleman from the Scooter store was here to measure me for a power chair... The physical therapist that came with him was really nice to me and thinks that the power chair was a really good idea... I don't know about that... I am not sure that I like the idea that I am going to have to use a power chair once and a while to get around... That is kind of a sobering thought to me... Kinda hits home if you know what I mean... I knew eventually this would happen, but not so soon... I am going to continue to fight the good fight and push as far and as long as I can, but IF I have to I will use the power chair... I don't like having to be reliant on the kids and John when I am having a bad day to get around... I don't know... I just don't like the idea of it...

March 7, 2011

Okay, yesterday was a really bad day... I didn't feel like getting on the  computer at all... All I felt like doing was sleeping, but I didn't... Instead, I separated and sorted beads - glass beads... It snowed all day long and I hate snow!! Matter of a fact, I hate the cold weather!!! I don't like the dark days of winter and would so much rather be anywhere that is warm - even Africa at this point!!!

Many people who have MS do not like the warm/hot weather... It makes their MS symptoms flare up... NOT MINE!!! I rather do better in the warm/hot humid weather!!! Hell, I love it!!! Not even the side effects - ugh, the flu like symptoms - from my Avonex shots bother me in the heat and humidity... I am able to get up and get going... How I long for those warm or hot humid days of the summer!!! I don't care if it gets to be 100 degrees in the shade with 90% humidity - not a single soul will hear me complain about it... I don't care if I have sweat running down my face when I step out of the swimming pool... I can't handle this cold any more... I swear NO ONE will hear ME COMPLAIN!!! Granted everyone else around me will, but I WON'T!!!

I caught a cold from somewhere, and that is part of the reason why I did not feel like doing anything yesterday... Aside from the snow coming down... I don't know where I caught it, I am so careful when I go out in public because I know if I get sick, I am going to get REALLY SICK... That is what I am REALLY SICK... If I laugh, I get light headed and dizzy, even if I am sitting down... UGH, I just don't know... So, it is Nitequil for me during the day and night... I hate this!!! If you can't tell, I am in a mood... And it isn't a nice one... Yep, it is one of those days, but it doesn't help that I am sick... Having a cold makes me feel very miserable - always has and probably always will... Seeing that I will be 41 in 6 days, I seriously don't think it is going to change now... I hate it when post nasal drip makes my ears hurt... I can handle anything about a cold - the stuffy nose, coughing, and sneezing, but I can't handle the achey sore ears or the pain in my face from the pressure in my sinuses... Enough to drive me nuts...

So that was yesterday and so far today... I am having another day like yesterday, and do not expect it to change... John and the kids are making me rest because of being sick and running a fever... I don't have patience for much of anything because of being sick so they know that it is best that I just rest... I feel so horrible!!!

Such as a day in my life.......

The first day blogging...

Okay, I know that blogs are nothing new... Seems like everyone is blogging about this or that... However, this is something that is near and dear to my heart... I am doing this maybe because it could be therapeutic for myself, but in hopes that others who have Multiple Sclerosis will see that even though this is a horrible disease, really it isn't the end of the world.....
 Players in this game I call my life are;
John, my husband                                         
Jeffrey, my 23 year old son                            
Courtney, my son's fiance
Krissy, my 18 year old daughter
Micheal, my 16 year old son
Angie, my 15 year old daughter
Scotty, my grandson
These are the people who are involved in my everyday life, and that is why they are being introduced. Others will come as they take part in the daily situations, but these individuals are the ones I will speak of mostly. So with introductions complete, lets get started with the daily - or mostly daily - journal of this little thing I like to call life... MS may be a horrible disease with no cure, but trust me - it isn't a death sentence...

When I first started having troubles, we didn't know what to do. I kept going to my doctor and she was starting to feel as helpless as I was. I told her both specialists that she sent me to made me feel like I was a hypochondriac, which I was not! Being a student of psychology at the time, I knew better. I wasn't looking for attention from doctors - hell, I got all the attention I needed from John! So she sent me to see Dr. Britton, who ran three different tests - which concluded I had Multiple Sclerosis. So, Okay - "where do we go from here? What are my options? What treatments are available to me?" I asked him. I didn't freak out. I didn't cry. I didn't scream "WHY ME?" I was calm, cool, and collected... I think I freaked Dr. Britton out because of being so calm about his diagnosis... What is the sense? None. It wasn't logical to me. It is all part of the human condition to become diseased - it is in our bodies chemical make up. No matter how much we try, we can not avoid diseases! It is impossible... It is, however, in our power to become knowledgeable about different treatment options and make a well informed decision on what is the best course of action for us to take for ourselves... My family took the news harder than I did, and I am the one suffering with the disease! I am the one who has to take the weekly shots, take all the meds every day to keep the symptoms in check!!! Yet, I am the one who is calm and accepting about it... WTF, I don't understand why everyone is upset about it...

So, anyway that leads me to this point in time... I have tried Copaxone - not a good match - I was allergic to the medication! YIKES, did not like the side effects from that medication at all... Now, I am taking Avonex. This seems like a good match for me, except I don't like the needles... But, I only have to take the medication once a week... However, when it is cold and damp, I seem to have more down days after taking my injection - which I do myself... I don't like to feel like a burden to anyone, and like being independent... When it is warm weather, I don't have a down day after my shots... Friday (shot day is Thursday night) I am up and at 'em - ready to rock and roll!!! But I have noticed this winter, Friday even sometimes into Saturday, I am not feeling well and all flu-like icky gross... Goodness, I can't wait until the warmth of the spring and summer get here!!!

For those who may read this who have MS - you have to get this in your mind, MS is not a death sentence and it surely isn't the end of the world. Sure you may not be able to do things you once were at the speed you were used to, but perseverance and determination are all you need. You need to take control of YOUR medical treatment. If you are not happy with your medication, don't be afraid to speak up. It's YOUR body! You are the only one who knows you best - no one else!!! Your doctor can only make suggestions, but ultimately, it is YOU who has the say so. If it isn't working - you can fix it. Remaining positive is a key factor in helping yourself.  You have the power to help yourself. Find a support group or others around you who have MS. Start your own support group. There are things about yourself you would be surprised you are able to do that you didn't think you could do or know you could do. Make a list of your talents/hobbies - you will see that life isn't as bad as you first thought. Then, you always have me that you can respond to - I will check and write back... At least I think you can do that with these blog... IDK, this is my first one... Hugs, blessings and best wishes