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 :)
Wednesday, May 23, 2012
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!!!
Saturday, April 9, 2011
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...
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...
Thursday, March 31, 2011
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
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
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