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 :)
Monday, May 28, 2012
Sunday, May 27, 2012
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 :)
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 :)
Wednesday, May 23, 2012
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 :)
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 :)
Monday, May 21, 2012
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!!!
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!!!
Friday, May 18, 2012
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!!!
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!!!
Friday, May 4, 2012
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!!!
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!!!
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