MARCH IS MS AWARENESS MONTH

HELLO all you awesome people. A few things today. I am working hard on some stuff for Multiple Sclerosis Awareness month.(NO I DID NOT wear orange today steroids have me too fluffy to fit in my orange. SO, I wore blue and Black and argued, it was a perception thing and could be orange and cream if the lighting was different) You know my crazy.

The good news, I got a good report and, I will be soon back to my (see picture above) self in no time. Because I look like I swallowed all of us and snow white right now. Thanks to steroids.(I hear you all doing the I KNOW SISTA groan)  My dr asked what was I eating today. I laughed because,

 its obvious and told him. “Given enough ketchup.. what won’t I eat right now.I’d eat your shoe cause I am kinda hungry.”  I have been on steroids.” How long will this be in my body? make it stop!” He knows I am always going to bring laughter when I am there. This is just how it is. Hey he is supposed to fix it right? We discussed how well I did with the exercise clean eating thing. He said lets do that but (as I have been saying and know this I cannot go crazy with protein because of shingles) I have to go more veggie.  So operation clean the diet is underway. I may be hatin on everybody for the next few weeks

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This month (the rest of it)  I have been gathering  stories from some awesome people as to  with all sorts of things questions, their advice, how they deal, all kinda stuff I have a lot of mail I am going through and I will get a post up shortly.  FIrst…

 

I wanted to also bring some attention to something we don’t always talk about during MS awareness month. Our caregivers.
I personally want to thank and give a huge THANK YOU to all of the care givers out there.
Without you I don’t know what we would do.
(I love you John and Bella and the rest of everyone that helps us )

I personally challenge you to be sure if you have a caregiver (even if that person is yourself) today to say an extra THANK YOU, Give and extra hug to your care givers.
THey need a ribbon and a month of awareness themselves!

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OK I have a lot more work to do, so I have to get busy. Had the dr appt. this morning. (My dr is leaving ::tear::  so was my last visit with him)  Going to miss him.   He is awesome.Seriously though, I wish him well. I THANK HIM for taking such amazing care of me, us. He will do amazing in research. I know he cares and will be looking out for all of us. Good luck to you Dr. Eckstein we will miss you so much here.  You made our lives better.  I chose caregivers today because. YOU were one of mine and You as well as my other dr’s, The nurses, My Husband, everyone that  have taken great care of me. I THANK YOU.

Till later My Fellow MS’ers

SO VERY WORTH IT!

LOVE and CARE

STILL,

Nancy with My JONES

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Whats this healthy you speak of

Being healthy I think is a privilege sometimes. No I’m not making fun or trying to get under anyone’s skin so calm yourself. Think about it. Now days, EVERYONE has something.  We as humans are so fragile. We like to think we are the greater species. If you think about it we aren’t.  There are things out there that can take us down in just a second. From viruses to  wounds.  And we are the top of the food chain!!  Diseases are everywhere and Im sure we don’t know the half of it.  We have to take the pro active to stay healthy. Yes healthy people still outnumber the sick. Thank you lord. Value your health.

Treasure it, protect it, So many take it for granted until  bam… they don’t have it anymore.

Health is not something you want to test to see the limits of how far it can go.  Dr’s can only do so much.  yes there are great medications out there but do you realize each medication comes with risk. (read the side effects people)

If you already have an illness what then?  well, From what I understand, have experienced and learned.  Guess it is pretty common sense.   You build up everything around it like a big shelter. Eat what you can to fix it, believe it or not food if for  healing.  when food isnt enough talk to your dr. tell them the truth about where you are in treatment options and WHAT YOU ARE WILLING TO DO.  if you arent going to follow the direction then whats the point?  They can’t help you if you don’t help yourself.

Some of the medications that we end up having to take though, I tell ya…

I feel like this little dog! On many occasions.

If you tell your dr this medication is interfering with my daily life that I want to be active and live. Trust me. They will help you find options. If they won’t FIND A DR THAT WILL.   YOU HIRE THEM.

You have to be open to the fact that there is only so much they can do though. reality is reality.

Multiple sclerosis is a hard disease.   I know that so many of us want to do things that we just are unable to when we get in flares. The depression of the life we want and the life that we are in just doesn’t match at the time. We have to keep looking forward.  Think about this.

When I was first diagnosed there were 4 choices (plus steroids there is always steroids) of medications for multiple sclerosis treatment. DO YOU KNOW THAT TODAY.. THIS DAY there are 11?

Yeah I just read that.  So that should show you there are improvements being made.  This should show also other diseases that things are happening with research.

Another thing with M.S. I firmly believe we have chemical sensitivities.  I know a lot of you will say “YEAH RIGHT” I used to be one of those people. I proved it in myself.  If you want to say yeah right fine. what is the risk. OH yeah.. feeling better? Prove me wrong.  I DARE YOU.

 

~~~~~~~~MS AND DIET~~~~~~

I don’t like to use the word diet because it isn’t it is life style. You have  to completely change how you think. I am not saying you cannot enjoy the occasional donut but you cannot jump off the lifestyle you have an underlying illness that will come screaming out like vultures.  ask me how I know!!

Here are some of the well known MS related diets. Personally I just like clean eating. These basically have all of the same in it and are structured toward illness.

*CHECK WITH YOUR DR BEFORE STARTING ANY TYPE OF DIET OR EXERCISE PLAN*

http://www.overcomingmultiplesclerosis.org/Recovery-Program/Diet/

http://www.swankmsdiet.org/

http://terrywahls.com/about-the-wahls-protocol/

Terry Wahls is amazing!!

Paleo is a promising one also. Terry Wahls bases a lot of her diet around that.

 

~~~~~~~MS AND EXERCISE~~~~~~~~

an object in motion stays in motion.   Move it or loose it.  We have all heard the phrases.  They are awesome.  There is some truth to them also. You see people that are still active at 90 years old and people say “oh Good genes.”You talk to them and what is the same thing they say? They stay active.  They are doing something every day with purpose.  We can not loose our purpose.  So we have to get up and move. If you are unable to get up then move it in your chair or where ever you are. If you can’t lift anything but your head lift your head! MOVE SOMETHING.  KEEP ON MOVING. If you stop then.. well.  you  exactly that. Don’t let can’t be your word.

Stretching is important for Multiple sclerosis and well anyone with anything actually.  It keeps your muscles stretched and helps us with those GOOD HEAVENS those muscleeee spassssmmms. We hate to so much. We can stretch through them!!

I found this page that has some great stretching exercises. It shows you how to do them.  look through it and get up and do them. You may like some of them You may not like some of them. Do em anyway with me.. 🙂                     You can find it                    HERE

 

Sorry this is so big but If I couldn’t read it… I figured my MS people would have trouble as well.

~~~~Some funnies and other stuff!~~~~

How many of us can relate to the above huh? NOW you understand why I want to get the diet in check?

Sorry This made me cry I laughed so hard. (still laughing)

Hope you all have a wonderful day.

Find something to smile/laugh about.

smooches

I am “Still”

~~~Nancy with a Jones~~~

A Break up letter….

This letter has been long time coming. Actually it has been in process for a long time. some of you already know that it has been happening for some time now.  Things have changed. life is different.   I hear this happens and is quite normal.   I have so many concerns and thoughts going through my mind and worries that I contend with that this letter just had to happen.  You see,  As I look around me in every direction what do I see?  advertisements for  various foods various treats various restaurants.

You cannot sit an watch a television program without at least 10 YES I COUNTED 10 food commercials coming on. Most of these commercials are for foods that are laden with high calorie high fructose corn syrup  sugar coated  greasy snacky quick eaten foods or restaurants. OR there is the quick HEY I LOST a ton of weight in so many days just drinking this and not eating but they fail to mention the tons of plastic surgery they had. (just saying)

 

 

This just gripes me to the core.  I went searching some time ago wanting to get off medication and to feel better for my family and for my little girl that is my entire world.  I have learned so very much from some AMAZING intelligent people that I am every day so humbly respectful and grateful for. I am forever indebted to for what they have given me. My life back. I know the tools to help me. I still am far from where I need to be but I am on a very good leap.

Tonight as I sat watching tv I have shingles. If you don’t know what shingles are. let me just share. it is like having chicken pox and a sunburn at the same time. it travels on the nerve and it is painful. EVERY THING PISSES YOU OFF. looking at you pisses you off. you want to cry if the ceiling fan blows.  Nothing really helps until the antivirals kick in and dry it up which… when and as it drys up it tightens on the nerve squeezes it and yessssssssss more painful.

I have had these SEVERALLLLLL times. I get them often because of steroids and having ms. This is the first time in SOME time I have had them. I got spoiled I was doing sooo well. So now I am a big ol baby. whiney. crying wanting to jump off the coffee table to my death (yeah like that would work i don’t have a coffee table so don’t commit me yet please that was a joke)

So instead I am finding other ways to release my inner pain. Journaling, pinterest finding these cool photos for future blog posts… redoing my blog.. by the way what do you think? YA ? No? Still work in progress. Got LOTSSSS more I want to add to it. working on more pages for MS help things and some clean eating stuffs. 

 Watching syfy shark movies (YAYYYY @  my buddy WICK  SHOUT OUT FOR SHARKNADOOO ROCKS!!! Tomorrow is ultimate syfy day in front of the big tv)

 

 

 Helping others that are struggling with MS and just need to vent. Doing soul searching on how I can help make things better for my family. ya believe it or not I DO THAT!  

I have caught some flack from some text messages from some jerk but I hear you will always have haters.   I thought I was doing a good job  I just got sick. MS is a horrible disease  Heat and stress make it worse and then I got shingles from the medication. I posted photos  showing I WASNT KIDDING I really have shingles even I am not joking about this.

I would be there I live for it. It is the only thing that works for my pain. I think the world of these people and why someone wants to mess that up is on them.  I just dont understand them. but=AND frankly NONE of their business. COME to my face and LETS TALK dont hide behind phoney texts and stupid messages. GROW UP. I hold what I am doing personal.  and respectful I speak highly of them and tell the world what I owe to them and what they have done for me.  I make no beans about that. Without them I would still be miserable in a bed.  I want others to know what I know. to experience that there is another way. MS patients do NOT have to suffer in silence. THERE IS a way. I found it.  I am grateful. so very thankful. 

so my break up letter is as follows.

I hear by am breaking up and vowing all negativity all of these things on television that give a negative influence to diet to body image and to what could even possibly make an impression on what my family eats.

WHY you ask? Because I saw this AMAZZZING oreo cookie commercial and all I could think about was how much I wanted some oreo cookies. NOW I have the will power of a mule that has sat down and won’t budge when I get it in my head I am going to do something. BUT I wantedddddddddddd those oreos. High fructrose corn syrup is one of my triggers. I found this out through trial and error. Also other things that trigger me and make me feel better and feel worse. SUGAR is horrid to our body. The cleaner I eat the better I feel. BUT.. I cannot have it in my house in my face.

It scared me. I was that influenced because a. I had a bad day and some jerk upset me. b. I don’t feel good c. I haven’t been to the gym in a couple weeks and it is getting to me.

so I hereby BREAK UP with bad influences.

OREO cookie company… im sorry but your going down. You need to face it. High fructrose corn syrup. sucralose and all those other things in your cookies NO ONE can pronounce and helllooo SUGARRRR is killing our society.

we use it as a comfort. when we feel bad. someone makes us mad we reach for comfort. someone upsets up or we don’t feel good what do we reach for?  Tell the truth….. Do you reach for food?  What is your vice?  

my thing  was always the double stuffed golden oreos (yeah they have new fillings now that look amazing but they are from satan)  I have not done this in a VERY long time Im talking MONTHSSSSS like since NOVEMBER. I have not eaten an oreo. But today. I would have eaten the box I was so upset.  THAT is what scared me. 

 

Being stuck in the bed right now and not able to  do what I know to do instead,  get up and exercise ,,,,,, is really making it hard. Before I could get my mind off it and just say no. I have a strict diet I follow and yes I followed it. You can look at my body and tell I followed it. wanna see?

 

 

That is me on the left  the big chunky one. That could hardly walk. I had to have a SCOOOTER and wheel chair at disney world.

 

This is me last weekend  in Jenning Louisiana at my sister in laws. 47 lbs lighter and walking.  

See a difference? That is how you know when someone is dedicated and working. 

 

I wanna GO work out. That is what I know to do when I am stressed. BUT.  I cant work out with shingles. IT makes it worse.  THERE IS NOTHING ON TV. I watched today STRIPES… Smokey and the Bandit.. and smokey and the Bandit 2…. and I wanted oreos.   I did do some stretching and got so nauseas had to go lay in cool water. so what do you do. 

SO here is my letter to Oreo:

Dear oreo cookies… You may try and tempt me with all your new wonderful flavors all you want. Yes, I know you have birthday cake filling now and sprinkles and double stuff and all these sound, really really nice.  YA see there is a problem though. HIGH FRUCTROSE CORN SYRUP,,,,,,,,,,,,, BAAAAAAAAAAAAAAAAAAAAAAAAAAAAAd  sorry that your stock is going down because I used to be a loyal customer. Don’t feel so alone because there are other companies that I no longer buy either. I READ LABELS NOW. I just cant put this in my body. IF you can  find a way to make it healthy then maybe just maybe but  I would rather walk and be able to see my child grow up.  I have a disease where this really does matter to the well being of my health. I also am teaching my child how to eat properly too.  so I wont eat your wonderful cookies  that are laden with sugar. I keep seeing your product advertised all over facebook and tv that used to be my ultimate favorite.  I have will power like none other.  BECAUSE I KNOW If i eat one.. I will eat the box and that will keep me from being healthy and keep me from being able to play with my child THAT is more important to me than your cookies.  I have to  keep my multiple sclerosis in check.

 When america learns that healthy eating does have a connection to their way of life and way they feel maybe you will make a healthy alternative  so our children wont want to eat this processed unhealthy food that causes disease.  Yes I have to admit I loved your oreo cookie but  it is not worth the damage to my body and the shortening of my life it will cause. we can not have a relationship because you are not healthy for me and I would rather choose my family and my health. My husband and  my daughter are more important than that second of sugar rush satisfaction i would get from a bite of your cookie. so I will eat clean and healthy and pray some day you will jump on the wagon and get rid of high fructrose corn syrup and the other   known causes of  bad diet and disease. Why yes it is a choice that is why I am breaking up with you oreo.. It really is me and yes a lot you too. signed nancy The Beast who wants better for her family Jones  And all the other bad food manufacturers as well. I vow to eat healthy not just for me. but for my family. 

WHat about you? 

 

I know this right here is about all the inspiration I should ever need. I love this little girl and would do anything to be here to watch her grow up.

so yeah high fructose corn syrup it really is you, we are never ever EVER getting back together.. we are through!

 

What about you…  what can you do to change your eating habits?  Do you know where to start? 

 

A flare by any other name is still.. well A FLARE

Nothing is more frustrating than the unknown. The uncertainty of unpredictability of a disease that no one has really any control over. It leaves you powerless and spinning like the tidy bowl man round and round down that endless drain of despair of flush. We all grasp for the golden ring of hope, the positive behind every situation. The strong arm to hold us up over the hump to make it through but glooming over is always the thought will it happen?
Well that is exactly what happened. I had been making it along rather well. TOO well I guess you say. beautifully. Eating good. Exercising. Getting to do so much I have missed. Beach time with my girl (HEAVEN)                                                                                                                                     Being able to drive again and work out (LIKE A BEAST MIND YOU!) Being able to feel like myself again. THE NANCY I know I AM. Not this person that is in a wheel chair or on a walker. on massive doses of ridiculous medications that make me feel like a zombie. It is like a light switch popped on and I came out of a coma. It has been so wonderful for my child and for my husband especially for my self and my psyche.

I have enjoyed every second

going and doing as much as possible. You can’t help but have the thought, though, of  how long will this last?
I know, I have been eating good and proper  with LOTS of help!

and exercising

and trying to keep my stress down to a minimum but hey LIFE HAPPENS. You know how some people just live to PRESS your buttons and see if they can set you off by beating dead horses. Bringing up everything in the world they can to see if they can bring you down.

 That is what I need to work on.  How to not let it get to me. How to deflect it and understand why they have to be that way. It is so hurtful and makes no sense why. breaks my heart. I still don’t understand that. What do they gain in my being sick?  Instead (dr orders) I have to separate myself from it. This is life or death.  yes I have heard this many times but he is NOT PLAYING now. He wrote it on paper. This is Not just oh I feel bad. This is not swallowing face going numb losing eyesight. major organs can fail. I don’t think some people get it. NO I am not whining or complaining just want people to leave their drama over ~~~~~~> and their nasty comments away. If you can’t be supportive. Then go away. simple as that. I don’t have time to be anything but happy.

 Sometimes I wish there was a switch in my brain I could click off to make me just not care. It would be so easy. Especially when it involves my baby girl.
she is my world.

My husband’s and my responsibility  solely is to protect her and to raise her in the way we promised before God. We stood in a church and vowed we would raise her to not take up to ungodly means.  We were blessed with this child we thought we never would have, It was our duty to return our blessings and thanks to God that promise  and we will keep that promise. NO MATTER what. No one will get in the way of that. Nor will a disease.

We sacrifice whatever to make her have a better life than we did.
Having said that. She has gotten very used to me feeling better so this flare up is hitting her very hard. She was getting used to the mommy that got to play. That was getting out playing outside. Going to the beach, at the gym all the time. I was making her so proud. She is NOT NOT NOT happy right now. she is struggling. It hurts her heart. which in turn breaks mine. Disappointing this child is the biggest issue I have. I want her to be proud of her mom. Not to be embarrassed her mom has ms. I want her to see her mom as a fighter that doesn’t let it stand in her way. That will fight the dragon and not just fight it BEAT IT. I had a very strong example growing up. I guess I want to pass that on to her. NEVER give up. I don’t want her to know the word quit. I want her to know a strong sense of self as well as will power.

She can do anything she puts her mind to.

I know it is ultimately her decision. She is her own person. We can only be the example. I just can only pray I give her a good one to follow. That she knows we are relying on the good book, the man upstairs for answers,and each other to keep it real. Staying positive. Never quitting and giving her all the possible love and opportunity we can muster in our beings                                     .

Truth is, A flare is a learning experience. set backs happen. It doesn’t mean its the end it just means its time to regroup back up re evaluate and try again. Dust yourself off and get back up. that is the important part. GET BACK UP. Never stay down keep going my dear. keep fighting. Keep dancing, keep singing, keep smiling. Things happen. Life will throw curve balls we just have to learn to adjust the way we swing the bat.

This is only temporary. You are forever. We are forever. Us 3. No matter what comes up we got this. no worries
Stay focused on what we know… what we know works. What we know doesn’t work, we will  leave outside influences where they are. BE POLITE but,  concentrate on our goals and keep focusing  on the challenge before us. we got this.  Love you with all my heart and soul ,

Love your mommy and daddy and yes charley and the 4 cats!

Happy St. Patricks Day

I hope you find in your pot of gold everything you wish for this year.

Today on Oprah was a show that was very good that I think everyone should watch especially if you or a loved one has been diagnosed with a significant life altering illness such as multiple sclerosis. Montel and Dr Oz take you through the emotions and the different emotions as well as the things you need to know to be prepared.
Montel williams Battle with Multiple Sclerosis

They also have information from Magic Johnson, Fran Dreshner, and Scott Hamilton on how they handled getting their diagnosis of life altering illness and how they handled it.

I have great hopes in the future for research to one day put an end to these horrible diseases. If nothing else I think this show at least got some awareness of what its like. I know it is very misunderstood since one person has it and leads a totally normal life then the next person is debilitated. So it is very misunderstood.