MS AWARENESS: Kristin Vautour

Since March Is MS AWARENESS MONTH, I wanted to do something special. I cannot think of anything more special, than to introduce you to others that are more aware of MS every single day. We all live it, so this is the real MS.  These are the REAL stories and the REAL people that have it. You will see all types and stages of MS. I hope you see how different it can be for everyone..  I would like to add before I start this.(as I always do) check with your Dr before you change anything in your own personal MS regimen. What works for one may not be the answer for another. ~ Nancy

Hi my name is Kristin Vautour and I would like to share my story. I was diagnosed with MS on Dec 18th 2013 at the age of 30.
I believe it started in April 2012 when I lost sight in my right eye. The optometrist stated I was a “rare” case. The eye Dr. didn’t know what to expect. I regained my eyesight within a month.
August 2013, I took a fall at my camp while i was cleaning. I ended up waking up the next day with my right side being numb. I went to the emergency room and was told later on that it was a “pinched nerve” and i shall regain feeling within a few weeks. Well a few weeks later, my stomach and back went numb along with the right side. I went back to the emergency room and was given and MRI. I received a phone call a week later stating that I had an appointment to see a neurologist.
I went to see the neurologist and was later told that I had multiple sclerosis!

That was the worst day of my life ever, well besides the day i was told that i have Endometriosis in 2007. Anyway, I was sent out to have all these tests done to make sure the diagnosis was indeed correct. I later told only close family about my diagnosis and they were all crying and in shock! My little sister thought that i was going to die! I wont lie to you, I was afraid and fell into a deep depression but who wouldnt after hearing that you have a neurological illness that has no known cure as of yet!

It took me almost a year before telling the world, well my friends and extended family only because i felt that they would treat me different or give me sympathy, when really, all i wanted was a shoulder to cry on at times.

Kristin and husband

My now husband has been with me for 10 years and thankfully he is here every step of the way I would be lost without him, I finally decided to marry him, the man of my life in April of 2014!
During the few months after the fall and the right side being numb, i fell down a flight of stairs at work. Off to the emergency room I go. I suffered a mild concussion, fluid in my right knee and a week off work. Apparently, MS was a part of this.

kristins knee

I have done tons of research to find myself and get answers to the questions i was looking for.
 Day after the wedding i had a relapse where I couldn’t’ feel from my waist down to my toes.To this day, i still cannot feel my toes and have a hard time walking.
I have spent so many days going back and forth to the emergency room, that i forget the number. Its pretty bad that when i go in i have to educate the staff members about my condition and what I need once I have a relapse.
I have been on Copaxone and since my body rejected the medication, I am currently taking Tecfidera. I feel that the medication is not helping only because of stomach issues since August 2014, but that is another issue, that I will discuss when I figure out what it is. 
I have to mention that I have met some great people along the way through face book groups as well! I feel that if you talk to people who share the same illness as you do, you are never alone without answers! I have been told to stay strong and keep smiling from day one and i have been!~

That she has. Kristin has a beautiful smile and is always smiling.  ANOTHER MS WARRIOR I admire! Thank you for sharing your story Kristin. You always bring a smile girl and touch so many.  Keep up the fight friend.~Nancy

MS Believe in the cure

If you have M.S.and would like to have your story highlighted here on my blog for National MS month,

Please contact me at NancywithaJones@Gmail.com

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MS AWARENESS

MS AWARENESS

I have not posted in the last couple of days. A viral  bug had hit Here (me) pretty hard. That is just one of the things that happens with M.S. We are more susceptible to Viruses and other illness. Especially when you have a school age child that brings home all the crud from school. I apologize for not updating, but I will be extending this  until EVERY PERSON IS HIGH LIGHTED. EVEN if IT GOES INTO APRIL.

Since I got this virus I wanted to share  some things M.S.  does. I don’t want to be negative but so many people JUST DO NOT understand.  One simple thing like a cold that on a normal person could just be a sniffle that they can keep going with, literally has put me in the bed for going on several days now.  It is hard to imagine and yeah some thing “YEAH you re just milking it” NO.  This Project IS VERY IMPORTANT TO ME.

I was very upset to have to put it on hold. I couldn’t talk, stand or sit up. Still dizzy when I stand. BUT, I am finally able to sit up.  I am being fussed at for doing this right now.  MS people often push harder and do things  to prove themselves  worthy.  I know I do. It is difficult to understand when you don’t have a chronic illness, better yet a couple of them. I know I belong to a group that has some pretty tough people  in it. These are some TOUGH individuals that  have hearts of gold. They are there for me and everyone in there because they go through it themselves.

I had a friend that came here and was here for me when I was literally at my worse.  I will never for get that. I had Tina that I highlighted last that let me do “FLAT TINA” to help cheer me up. I was in a really bad place having these shingles FOR SO LONG.  They are amazing friends. I love them. I am thank ful for them just like I am my family and church family and any friends.  Support groups are important which leads me to my first key point.

ms highest rate of depression

SUPPORT*  Multiple sclerosis is a tough disease not just on the person going through it but their entire circle. The entire family suffers.  I am fortunate I have a  family group of friends and church family here. So many don’t. If you live near someone and you know they have a chronic illness such as MS If you know them, do something nice occasionally. put their paper on their porch, Take the garbage can back to  their house from the road, get their mail for them, or give them a call when you are going to the store see if they need anything. Be a friend. They may be reluctant at first, that’s normal, Don’t let it discourage you. People with chronic illness are used to doing things for themselves they don’t like asking for help. It may take a time or two. I  know there are so many times I wished my friends would show up in PJS with a movie so I didn’t feel intimidated to have to put on clothes and go anywhere. But IT IS A LONELY illness.  When in a flare you can’t really go anywhere.  Especially with secondary shingles. Not everyone is that way though. BUT you can give them support other ways. I have gotten so many cards and let me tell you that right there is a great way to show you care. just a simple card. is so sweet.   Drop an email or an instant message I know it is hard to get hold of people by phone these days. But you can leave messages. Knowing someone out there is praying for you and cares sometimes can be the difference in fighting that extra bit harder. so I encourage you to do this for others. So many fight this illness and OTHER ILLNESSES. Elderly and young alike. a simple thought of “Im here and thinking of you and  praying for you”  will help them so much even if you don’t understand.  I had someone tell me they were reading about MS and trying to understand. That was the sweetest thing i had ever heard.

sometimes further support is needed. If you cannot get to a LIVE support group in your area. There  are several places online:

http://www.MSWORLD.org is a good one

http://www.MSCONNECTION.ORG is another one

http://www.Caring.com has a list of some

http://www.Nationalmssociety.org also can put you in touch with one that may be right  for you.

Those are just a few. There are many out there. Just google MS SUPPORT GROUPS and the list that comes up is endless. MS WORLD has  different sectors under it that can put you in touch with others that have smaller groups.

national ms society

*Rest-  We all know how important rest is.  That is the one thing I remember before I was officially diagnosed. I was so tired. I used to go go go go go. constantly. Always the one doing and going. BUSY always. I cannot get over the devastating exhaustion that goes with this disease.  It is important (according to my dr) to listen to this and rest. I  know we want to not disappoint our families or friends and we want so badly to  do  things. We wear ourselves out just getting dressed to go places and it is disappointing. When we have good days we want to celebrate and we often over do it. WHY? because we don’t know when the next one will be. so we just go crazy having the best day ever getting as much done and as many memories as we can out of it as we can. We know the next day (or the next) we will be back down to the rest cycle.

ms rest after taking a shower

When we hit a remission we can feel like a normal person. It is just getting there.

*Stress ~ This is a biggie.  Stress to someone with MS is like Kryptonite to superman. We have to learn how to control stress. Or get rid of it. Exercise really helped me when I am able. Yoga, stretching, walking,

stress whatstress

There are lots of great ways to manage stress. Many MS people like to spend time creating  Making Art, creating poetry, There are so many outlets you can use. I personally love to scrapbook photos of my family and make home decor art as well as paper crafts (cards).I find that  doing things  for  others helps get my mind off what is going on in my world. (when I am not  having a shingles attack and  can volunteer) our church has so many programs to volunteer with.  It  really is good for the soul. If you like to make cards there are lots of  places that love to receive them such as the veterans hospitals, nursing homes, Ronald  Mcdonald house, Churches have shut ins Im sure they would love to give them to someone that needs a smile.

make one person smile

Those are just a few topics this week I wanted to share with you that some don’t discuss when talking about MS. I will go over others next week.

I will highlight another person with MS tomorrow. I hope you all are having a great week  🙂

thank you for being awesome

Nancy J

MS Believe in the cure

I

MS AWARENESS: Sydney Walker

MS AWARENESS: Sydney Walker

Since March Is MS AWARENESS MONTH, I wanted to do something special. I cannot think of anything more special, than to introduce you to others that are more aware of MS every single day. We all live it, so this is the real MS.  These are the REAL stories and the REAL people that have it. You will see all types and stages of MS. I hope you see how different it can be for everyone..  I would like to add before I start this.(as I always do) check with your Dr before you change anything in your own personal MS regimen. What works for one may not be the answer for another. ~ Nancy

MS AWARENESS LOOKING FOR A CURE

After a couple of years of having different vision trouble, many dr appointments with no answers. I went on vacation to an island right after spring.

Being a hairdresser, precise vision is usually a must. I came home from the trip, woke up the next day with blurry, double and triple vision. My eye sight proceeded to become worse to the point my eyes were literally stuck. I was unable to move them up or down nor right to left. That’s where the start of this journey to find out what was “wrong”  really escalated.

After two spinal taps, they found nothing and was sent home befuddled. This may seem very odd to hear. I then broke out in the hives and I was given prednisone as the result. Which as we all unhappily know is about the only thing that “fixes” us. It also cleared up my hives.  It took another week or so to “straighten up” from all that!

ms 2 ladybugs

I was then referred by my eye doctor to another eye doctor. He knew right away from having me do a few simple tests (reading childrens colored books) that I had M.S. Which at that time,1994, I had NEVER heard of …He then called a neurologist and within less than 3 days I was diagnosed with Relapsing Remitting  Multiple Sclerosis

.I find laughter in something every day to help deal with M.S. …Laughter is the best medicine!!!

MS not cooties

If someone was just diagnosed I would tell them not to overwhelm themselves with everything they hear,or  read just any and everything. It can be very scary! When going through a hard time with M.S. my advice is If you have a understanding person keep them close, don’t push them away. Try to find your comfy place, having a pity party is totally fine. Just don’t stay there forever, And remember this to shall pass.

 MS FIGHTT

Thank you Sydney! You truly are an MS WARRIOR! I have not known Sydney that long but what I do know SHE TRULY IS a fighter!  MS will not get in her way. She is very funny and has made me laugh on so many occasions.  kEEP UP THE GOOD FIGHT FRIEND!

 MS Believe in the cure

If you have M.S.and would like to have your story highlighted here on my blog for National MS month, Please contact me at NancywithaJones@Gmail.com

MS Awareness Amy Donaldson

 Since March Is MS AWARENESS MONTH, I wanted to do something special. I cannot think of anything more special than to introduce you to others that are more aware of MS every single day. We all live it, so this is the real MS.  These are the REAL stories of MS and the REAL people that have it. You will see all types of people and stages of MS. I hope you see how different people are that have MS.  I would like to add before I start this.(as I always do) always check with your dr before you change anything in your own personal MS regimen. What works for one may not be the answer for another. ~ Nancy

AMY DONALDSON

My name is Amy Donaldson, I’m 39 years old.   I was diagnosed in August 2012 when I was diagnosed with optic neuritis and lost sight in my left eye.  Although I was just diagnosed in 2012 I believe I have been suffering symptoms of MS since my early 20’s.  Eventually my sight came back with IV steroids.

My MS medicine of choice is Tysabri and I love it.  The main symptoms I deal with are fatigue, memory loss and leg pain.

I have had one relapse of optic neuritis since my diagnosis.  For the most part my MS doesn’t affect my daily life.  I still work full time as an accountant and am raising two kids 9 and 13 and am married to my high school sweetheart.

amy rietel high schoo sweethearts

We have been together 23 years.  My best advice for fighting this disease is a good, positive attitude and you have to be your own health advocate.  Do your own research don’t rely on your doctor to educate you on everything.  Each day I wake up and put my boxing gloves on!!!  😉 I am thankful for MS, I’ve met some amazing friends like Nancy. God is always good. If I’ve helped one person, made someone smile or laugh then maybe I’ve shown a little bit of God’s peace. That there is hope. That makes suffering this disease a little easier to bear.

amy donaldson family

Amy is a wonderful mom. You can tell she has great faith as well as puts her family first. She is always smiling and cheerful. Even when she may have a bad day she will still have an encouraging word for someone else.  She is truly an MS WARRIOR and I am proud to call her my friend.~ Nancy

MS Believe in the cure

If you have M.S.and would like to have your story highlighted feel free to contact me at NancywithaJones@Gmail.com

MS AWARENESS Joey Marra

MS AWARENESS Joey Marra

Since March Is MS AWARENESS MONTH, I wanted to do something special. I cannot think of anything more special than to introduce you to others that are more aware of MS every single day. We all live it, so this is the real MS. There are some very diverse stories that will be happening throughout this month and hey it may go longer the way it is looking. Which is AWESOME!  These are the REAL stories of MS and the REAL people that have it.You will see all types of people and stages of MS. I hope you see how different people are that have MS.  I would like to add before I start this.(as I always do) To always check with your dr before you change anything in your own personal MS regimen. What works for one may not be the answer for another. ~ Nancy

Today, I want you to meet Joey Marra. (His story as told by his mom /caretaker  /superwoman Carole J. Stoll-Marra)

joey marra 1

It all started in Feb, 2005 when Joey was 7 years old. His eyes were bothering him and it appeared he had pink eye (I thought)
So, I took him to the Pediatrician’s office.  They did diagnose him with “pink eye”. Gave him some eye drops, sent us on our way..a few days passed. Joey’s eyes seemed worse.
The left one was red.He was in excruciating pain.We took him back to the Dr.  They sent us to an eye specialist where he was diagnosed with Uveitis.(inflammation of the iris).
I NEVER heard of it. Had NO idea what it was.
They told us there was an underlying cause..boy,they were right!!

joey Mara first ms walk

The very next day,Joey was losing his balance,had memory problems and was very tired..too tired for a 7 year old boy,I thought,
Then,he fell hard on the kitchen floor & could not get up..we called 911 and they took him by ambulance to Women & Children’s Hospital Of Buffalo.They admitted him. They did numerous tests..MRI’s,spinal tap,blood work,etc..also started treating him with steroids.
They found lesions on his brain. They suspected ADEM..he was released a week or two later only to have more debilitating symptoms..and ended up back in the hospital several times that summer..then, MS was suspected but we were told several times he was too young, not to worry.
We wanted answers..so,June,2005 we took Joey to Children’s Hospital Of Philadelphia where he was admitted..more tests,steroids,etc.

The team of neurologists came in and told us they highly suspected Multiple Sclerosis.

That we were going to need all kinds of support.But,they did not diagnose him, sent us home.
Buffalo was hesitant to diagnose him because of him being so young.Then,Joey had another flare-up..back in the hospital, back for more tests and steroids..sent home again. numerous Drs. appts. until..

joey mara my hero my son

The diagnosis day-Jan.10th,2006 Joey was 8 years old.
Came the appt,I “thought” the neurologist was going to tell us he was going to be okay.
We sat down and she came in the room saying “It looks like MS.”
What do you mean,I said? You told me all along he was too young.
She just looked at me and handed me a packet about MS & Avonex.
Told me a visiting nurse would be calling to set up a time to show us how to do his shots.

joey mara having steroidsJoey mara steroid iv

Avonex took away Joey’s quality of life,(I personally feel)..so,they put him on Betaseron which caused his liver enzymes to elevate.Copaxone came next which he tolerated well but turned blue and stopped breathing after injecting himself a few times..Jan.2012 was the final Copaxone shot that almost killed him.We called 911 again.. while we were standing in our living room with eight EMT’s. That was enough. I called his neurologist and  told him NO MORE shots!!

Joey Mara 2014

Here we are three years later.We DO NOT regret our decision and are fully aware it is possible some day Joey will have to go back on treatment. But,for now he is eating healthy, clean diet, exercising 2-3 hours a day,has lost a lot of the weight he gained from the treatments and is an honor student.

joey mara in a tux

Joey won the “Making A Difference Award” in 2006 for a book he wrote called ” I am a kid with MS”.. We went to the National MS Conference in Orlando,Florida where he read his book in front of 1,000 people! We met Richard Pryor’s daughter & David Lander..it was sooo cool!!!
Joey’s mom,  Carole, Is Joeys advocate, his cheer leader, his caregiver, from having to help him get out of bed some days, to being his eyes, and making sure he finds his way around in a store without getting lost. “His eyes are so sensitive to light he has problems seeing where he is, He can get turned around so easy in a store.”
I asked her how they handle all that goes on with M.S. she said “he has an amazing attitude and wonderful sense of humor”  (she is always talking about him and her son Jacob I kept trying to talk about her she kept guiding me back to them hahaha)
Carole is such an amazing mother, you can see it in her posts online and how she just beams in her photos.
Joey mara and Carole
Joeys brother Jacob loves to cook, actually, he does most of their cooking she says and they refer to him as “Chef Jacob”. I have seen some of his amazing dishes online with a host of likes and “what time is dinner”
joey and jacob cookingjoey mara jacob cooking
I have to tell you he is pretty amazing from what I have seen! They all support each other.  That is truly what it is about.
JOEY MARA TEAM JOEY
They tackle this as a family.  They do MS walks. Fund raising.
They have a wonderful support system for Joey and for all of them.

This poem that Joey wrote I think says it all perfectly,

JOEY MARAS POEM

Joey will be 18 on March 19, 2015.

joey mara then now

HAPPY BIRTHDAY JOEY

KEEP UP THE GOOD FIGHT! YOU TRULY ARE AN INSPIRATION AND AN MS HERO!

MS Believe in the cure

Nancy Jones

MY ONE LITTLE WORD for 2015

I don’t know about you all, but I have had a lot of trouble this year trying to think about what word to use as my signature word.  I went through all the usual, Blessed, Amazed, Grace, Love, Precious, Live,Love, Laugh, Shine, …. it all sounded so,, superficial then I thought hey that’s a word. Not one I want as THE word though. (You can see where my brain is) I have been so scattered for a while now. I think this flare up has just thrown my brain into a big heaping pile of Random and shook it around and let it go flying about. Everything has been so out of the normal it seems and we have been struggling to get back to our groove. So as I sat here tonight thinking about 2 sweet awesome people I spent time on today. (I just loved,  may I add that) It made me really stop and think (yes, thinking, It did kinda hurt I know you will ask)  😉

I need to just get to that place where I can be “Still” again. Then it hit me. AHHHHHH!!!

fat lady

 !!STILL!!!  I know, IIII KNOOOW,  that seems like such a crazy, strange, word to be MY word. BUT hear me out. (and well duh MY WORD what do you expect anything but normal right?) I knew you would agree.
Still, is a VERY versatile word and is kinda all over the place. Like me right now. It means so many things. This word can be A noun, A verb, an Adjective, even an adverb. I KNOWWW!
It describes so much of where I am at right now what I am striving for, What I wish to be, what I so very much need. And who I am.. Still me. Looking for stillness,  Still the same ol same ol, we are STILL doing this huh? see where I’m going with this? But in the end. I hope to  end the year with calm Still, peace Be Still While right now its all… Still me! going AHHHHHCK. Make sense? Im looking forward . to the end.

Lets look at the definition (s)
STILL

stil/Submit
adjective
1.
not moving or making a sound.
“the still body of the young man”
synonyms: motionless, unmoving, not moving a muscle, stock-still, immobile, inanimate, like a statue, as if turned to stone, rooted to the spot, transfixed, static, stationary
“the parrot lay still”
antonyms: moving, active
(of air or water) undisturbed by wind, sound, or current; calm and tranquil.
“her voice carried on the still air”
synonyms: calm, flat, even, smooth, placid, tranquil, pacific, waveless, glassy, like a millpond, unruffled, stagnant
“the lake was still”
(of a drink) not effervescent.
noun
noun: still; plural noun: stills
1.
deep silence and calm; stillness.
“the still of the night”
synonyms: quietness, quiet, quietude, silence, stillness, hush, soundlessness; More
antonyms: noise, disturbance, hubbub
2.
an ordinary static photograph as opposed to a motion picture, especially a single shot from a movie.
adverb
adverb: still
1.
up to and including the present or the time mentioned; even now (or then) as formerly.
“he still lives with his mother”
synonyms: up to this time, up to the present time, until now, even now, yet
“she’s still running in circles”
referring to something that will or may happen in the future.
“we could still win”
2.
nevertheless; all the same.
“I’m afraid he’s crazy. Still, he’s harmless”
synonyms: nevertheless, nonetheless, regardless, all the same, just the same, anyway, anyhow, even so, yet, but, however, notwithstanding, despite that, in spite of that, for all that, be that as it may, in any event, at any rate; More
3.
even (used with comparatives for emphasis).
“write, or better still, type, captions for the pictures”
verb
verb: still; 3rd person present: stills; past tense: stilled; past participle: stilled; gerund or present participle: stilling
1.
make or become still; quieten.
“she raised her hand, stilling Erica’s protests”
synonyms: quiet, silence, hush;

 

I think this is going to be the perfect word for 2015,

So That’s out of the way.I know you are excited huh HA HA.

 

Speaking of “Still” Im FINALLY Weaning off the steroids (GOO MEE!) So Im not sitting  picking out the marshmallows in the Lucky charms any more as much.. or ok.. Ill play along. “STILL”

lucky charms all marshmallows

 

 

That is my dream cereal though. Why they don’t make that. I have no Idea. Cause… MMMHM! :hand up to the lord::

 

I am still feeling a LITTLE.. like this but well if you know me.. I`m kinda this way even without steroids.

 

IM ADELICATE FEMININE FLOWERRR

Yeah, that with the virus on top of it. My face.. Just like that.  I kid you not. But I’m not “still” like that as much. Ok maybe.

staypuff marshmallow  man

NOW THIS… UGHM yeah. I am “STILL” lookin like this.   I love taking steroids because I feel better but man. I reallly do not like what they do to our bodies. Although we feel better on them.  I look like stay puff Marshmallow girl and Michelin man’s love child.   MICHELIN PUFF “STILL” yess I STILL look all puffed out. I know it will go away though.

 

~~~~~~~~~~~~~For my Clean eating people and MS People This  is for you~~~~~~~~~~~~~

A TIP OR TWO

RAW ALMONDS.. As long as you don’t have an allergy to nuts. Keep RAW almonds  around in the snack size (yes they make those short zip lock bags) zip lock bags for emergency snacks. In case you get caught in traffic, or You are late to your lunch. Measure them out ahead of time. Keep some in your purse, glove box in car, or gym bag. ALL THE TIME. You can measure them out by cupping the palm of your hand. That is about how many you need to eat (and don’t pile them up)  A few reduced fat triscuits are another option. READ THE SERVING SIZE.  PRE MEASURE IT OUT into the zip lock baggies.  This way you won’t over eat if you are late for meal. It is advisable to  have your meal on time every time.   That isn’t always possible. They make chicken instead of in the can in pouches now. A great quick easy GO MEAL. (can eat it with triscuits  read serving size!!) or straight out of the pouch with a fork.

When you learn to eat to live instead of live to eat. Everything changes.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Having M.S. we are burdened with so many freaky things  Muscle spasms are a constant question people ask about on message boards and chat groups.   Most dr’s prescribe medications that will just make you out of it and all you can do is go to bed.  If you are like myself and have a child. That just can’t happen. we have a life going on and we want to live it. Not sleep all the time.

My goal is to live.  I have found some things that WORK FOR ME  and I am gladly sharing these suggestions here on my blog.  These may not work for you. So try at your own risk. I don’t know your underlying issues so please talk to your dr first ok? Deal? Thanks.

I have battled muscle spasms that are not only painful but down right freaky and crazy. They freeze up, tighten up and the screaming will commence. At times nothing will release them until I just go get shots and everything they can throw at it to just MAKE… IT… STOP. that has happened twice in my life. Looked so freaky to have one leg and hiney cheek tensed up all the time and the other normal.

So when I say We have tried EVERYTHING. Im serious.

I do a LOT of stretching. I have found keeping my muscles stretched helps.

HERE

is a FREE  illustrated step by step manual from the national MS society that shows you several  stretches you can do daily to help alleviate or lessen these muscle spasms. At first it may be hard. It may hurt. You may not be able to do them. Don’t quit, Don’t give up. Keep doing it.  All this didn’t happen in a day. MS got worse over time. It will take time to help.

Start slow on the stretches and build your way to more.

I also use a series of Essential oils to help. Lemon grass (diluted with  coconut oil) because it is a hot oil and can burn your skin also helps me.  I have a mixture of essential oils that I have added to my regime that help me.  Lavender and Lemon grass  are 2 of the ones that seem to help ME to relax my muscles the most when spasming.  Everyone is different and what works on me may not be what works for you.  I will be glad to help you with finding what works for you if you are interested.  just let me know.  I have done a lot of research and also have contact with very knowledgable accredited people that will make sure you do it correctly.

PLEASE DO NOT just go to a store and buy oils and start using them.  All oils are not made the same and there should be a lot of research involved before a decision to use  them.you should have support in helping you educate yourself with them as well.  It can be dangerous just like using vitamins and herbs. It is medicinal and can also interfere with medication you are taking. So always let your dr know if you are taking any essential oils along with a health care medical routine.  There are many do’s and Don’ts. I would be irresponsible if I just  told you OH this helps me get it!! So know that  it is important to use them safely. I care that you get relief not more problems.

Thanks.

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sudden changes in temperature trigger ms

It is believed mostly that HEAT can cause MS to go all bonkers but, DID YOU KNOW, that any sudden change in temperature can trigger an MS flare? This is true.  This was released in a study recently  that any sudden change in temperature can cause symptoms to worsen. So when these “Arctic Blasts” hit and we feel all ickified.. its not just oh I feel cruddy. It truly is our MS. So be watchful of symptoms just like you do when you flare up at other times.

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do you know how much it hurts to say no

I know people with Chronic Illness get this.

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hello nerve ending has been disconnected

Keep fighting! Never ever give up!

I’m …

“Still”

Nancy

with a Jones 🙂

2015 TRIED AND TRUE.. Back to me and you

I an effort to get my me back in 2015, I have decided to start writing again. It did me a lot of good. I also have A LOT of scrapbooking to catch up on. It did me a lot of good in accountability and daily self checks. I know my family likes to look at the pages and things so this is a place that is standard that everyone can see. So much happened in 2014 and I didn’t get much done really. I had a humongous Shingle flare up which led to an M.S. flare up, which led to a new medication I took one of that caused an allergic reaction and HUGOMONGOUS WORSE SHINGLE OUTBREAK IN THE HISTORY OF  SHINGLE OUTBREAK, more steroids… then eye infection, then shingles on the other side… and then a viral infection.  This was the biggest break out I have ever had in my life. It was terrifying because it wouldn’t go away and got right around my eye, down in my ear and places that caused pain I never have had. Im not saying that for woe is me, but if this helps just one person to understand, and get diagnosed earlier. Or to understand what someone else with this horrific disease does. then YAY. The last 6 months have been unreal.  a True test of so much.  one day to the next not knowing what now.. So many are sick I understand that.  this was a really bad place I was in. I’m very blessed with the support I have. I want to pay some of it forward to others.  So I can give back here.   I want to do something positive. Something that I know.

Our bodies change. MS is a fickle illness. Having Chronic Shingles along with it makes it difficult. I am fortunate to have one of the leading MS specialists in Mobile as my dr …. but wait. He is leaving in April. I KNOWWWW. I have cried, Begged, Bribed. But His heart is in research and teaching. Honestly we are so lucky to have him there. He promised me if a study comes up that fits me He will call me. I love this dr yall so My next one … he will be in for it. ha. He is making sure I am well taken care of before he goes (thank you lord)

I wanted to do a catch up  post on here the first post of wonderful things that happened in 2014 I can only tell of one thing. Nothing can top this.

THE BIG ONE..

BELLA GOT BAPTIZED!! We were/are beyond proud.

 

Bellas baptism certificate

 

Bella  baptism photo

 

 

(Photo compliments of David Carter Photography)

This photo looks amazing in person I took a picture of it with my phone so you could see how amazing this day was. So forgive my shaky hands. My photography isn’t so great anymore.

 It was a wonderful day. We were so happy that Aunt Irene, My Mom and a very special person in our life Bellas teacher from kindergarten as well as a close family friend Mrs Glenda Massengill  were all able to be there.

We had tried to do the baptism several times, Things kept happening. Bella would get sick or I would get  sick or family couldn’t be there or something was going on at the church.

I didn’t personally take any pictures. (I KNOWWW) I was too busy  looking in full amazement.  Y’all! The choir loft was  dark and all of the choir was turned looking  up at the  baptismal, it is  hard to explain it was surreal,  The  Lights were all off except the spot light.   The over flowing light of the Choir looking up at them… It was the most beautiful thing I had ever seen. It kinda reminded me of a glimpse into heaven sorta maybe almost and made me think the lord himself was right there and these were all the angels of heaven stopped still, looking at what was happening.  Rejoicing that my baby was now  part of this kingdom. I know .. How arrogant of me to think such. Who am I but just a human. But if you could have seen what was in front of me.. It was breath taking. Yes I was crying.

I knew at that moment Bella’s Nana in heaven and my Grandmother  well everyone that had gone before us and is waiting on us there were ELATED beyond Joy and I KNOW that the Lord Jesus was thrilled. Bella had given her heart to Jesus a long time ago.  She was little when she came to us with this decision. Matter of fact Mrs. Gloria Massengill played a huge part in that.  So many people think children are too young. But, I dunno.. She knew.  I talked to Mrs. Gloria and she talked with her too. It was the sweetest thing ever. That is why I was so happy she was there to see the follow through of the baptism. Bella never wanted to  physically get baptized.  Pastor Brett did a sermon one sunday and in his sermon he spoke a little about why we get Baptized. On that Sunday Bella came in and said ” Ok  fine…  I need to do it. she sighed.. I need to get Baptized. If Jesus can do it… I can do it.”  (she was scared of the water) My heart leapt.  Yes I cried. (You see a pattern here?)

When you accept Jesus as your savior it is the most amazing day ever. You feel so alive and excited. People, let me tell you… When your child gets baptized… When your child accepts Jesus and you KNOW they get it. They truly mean it and you know they are fully there. without a doubt.  There is not a feeling in the world like it.

I know I am not perfect. I fail daily I am far from worthy.  I am easy to loose focus and get frustrated so easy. YET, I can say this. I recognize blessings when I see it. I know Where my hope is found. I know Jesus Christ as my lord and savior.

 I know 2015 is going to be better because THIS was the most amazing thing that happened in 2014.  When I sat trying to think of something positive. All I could think about was this. So 2015 is going to build on it.

We haven’t been in church in the last .. long while. I miss it. Sickness has been a mess. BUT, IT IS  better.  We waited out today because I start new medication and I DID NOT want to risk it.  If I get sick I cant start it.

 2015 is going to be a rebuilding year for us.  Going back to what we know. We tried all the other stuff in 2014.. we tried other ways of doing things.  we tried medications that led to getting very ill.   When the way I was doing things was working (clean eating exercising and doing steroids when I had the occasional flare up)  Going to church  living simply and staying with the basics. Scrapbooking our life  and living our love song day to day the way God intended.  Sometimes it is just best to stick with what you know works.  Quit trying for “NEW AND IMPROVED” when TRIED AND TRUE is NOT BROKE.

So I will be updating this more regularly and putting some recipes on what clean eats I use. Exercises that help me with certain  problems with things.   THESE ARE THINGS THAT WORK FOR ME!!!! So for the necessary stuff: (sorry I have too because.. well you know those labels on hair dryers that say don’t use  this in the shower.. there is a reason for that so I have to do this same reason)

I am monitored by a dr. I am not just going all willy nilly doing all this.  So do not just do this and then say NANCY SAIDDDD. Go your self to the dr and tell em whats going on. Ask them if this could work for you. Everyone is different and you could have a different set of issues that it could hurt.  Cause… I ain’t gone be tellin you to do nothin to hurt you.. with me? k. just gettin all that straight now. 

Starting tomorrow I will start eating clean so … approach with caution as I go through detox of sugars , excess toxins blah blah and etc. 🙂 Prayer will be happening all day and welcomed.

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COOL STUFF

Tip: Have a Pre made jug (I do a gallon) of ICE COLD, as cold as you can get it water with lemon, cucumber, a little fresh mint if you have it, and lemon wedges. (lime works ok but lemon is a great detox) Prepare the night before and put in the refrigerator so it sits over night. (I have a big jug that has a little spout on the front i can push and it fills my cup straight from the fridge no lifting) drink on this all day long until it is empty!!!

Here is why. As the cucumber, Fresh mint and lemon sit over night they soak into the water and flavor it with its goodness. The cucumber helps flush out toxins and promotes clear skin, They aid in digestion and help us absorb hydration.  Use half a medium cucumber per gallon,  Lemon (take out seeds) is a diuretic that will help FLUSH your system, and cut down your cravings for sweets,   CUT THE LEMON AND CUCUMBER AS THIN AS YOU CAN FOR OPTIMAL FLAVORED WATER.  MINT about 10 to 12 sprigs.. The mint will help appetite suppression.  All of it together also increases your metabolism. It is good for you. I would NOT drink this every day  Good plain water is good also.  But it is great during the first 3 days of detox to help speed it along to get those toxins out!! DRINK DRINK DRINK.

BONUS TIP: Pre make your food for the day the night before so you wont be hungry and “looking” for something quick. It will be right there for you to grab and eat. I always make a turkey roll up or lettuce wrap, I have my protein shake sitting on the cabinet ready for me to mix so It is a NON THOUGHT.

I learned this from some very intelligent people and they were right. It works.  I keep veggies cut up, I keep my salad prepared for lunch or my rice and chicken whatever my meal is ready for quick eating so I wont attempt to grab something that is “easy”

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RECIPE

Here is something easy for you to get you started. I  like to do this and make enough for several days. SO MUCH you can do with this, Freezes well also!

SLOW COOKER SHREDDED CHICKEN

Instead of the seasonings they use. I use ONLY Mrs.Dash Original, Mrs Dash Onion and Herb and  Mrs. Dash Garlic and herb.  A little pink salt and a little pepper. If you want evoo and Acv add a bit to taste.

You can  drain then cool completely.  Store it in  pre measured zip locs or just in a dish. Then have wraps, Chicken and rice with Broccoli, Spinach or whatever veggie, Chicken and salad. Or whatever  your clean meal is and the chicken is already done. If others in your family are not eating clean (which THEY SHOULD BE) They can add it to whatever they are eating as well (Bella likes it in Mac and cheese)

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natural ways to treat Multiple Sclerosis

Again be sure to check with your dr before adding subtracting or changing any medication to your healthcare regimen.  I am not a dr.. I don’t even play one on the internet. I just read stuff that looks interesting. If It helps AWESOME!!!

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Ordinary acts

HAVE A WONDERFUL DAY.

NancyJ

Let me know what you think of this post. More of the same? not so much? eeeh?

Take That M.S.!!!!

I know y’all have heard a lot about the gym lately and, all about the food I am eating  blah blublah blah.   WELL Ya know how when you try something and you have felt like just death is knocking? For instance:  you  normal people (is there such a thing?)  you get the flu. stay with me here, work your imagination muscle.  You feel like “OK lizbeth.. Im comin. This is the big one” But you have the flu..  Then :insert amazing magical noise: You take some Flu killer night time special something that knocks you out.  You look like Drew Brees (drool) in the commercial (drool) passed out asleep, resting better than you EVER HAVE with the flu. (let it be noted I do not work for some flu killer night time special something that knocks you out company or am I affiliated with some flu killer night time special something that knocks you out company OR here by or ever have been or ever will be getting any type of kick back, trips, anything actually (cause I made them up duhr) from said company so use whatever flu med of your choice was just an example so don’t sue meee or Drew Brees. thank you I hate dumb people make this necessary,  deeep breath. end note)    SOOO You wake up the next day. YOU FEEL SOOOO much better.

Well, what do you want to do?  TELL EVERYONE.

“OH MAN GUESS WHAT?!? I felt sooo horrible and I tried this xyz flu killer and I slept like Drew Brees (drool) last night. I feel so much better. ::sympathetic voice::   I saw you sneeze/ DO You feel baddddd? ::all excited:: You HAVE TO TRY THIS!!!”

YOU DO IT.. admit it. YOU KNOW YOU DO! we all do.   ANy time we know someone is suffering We want to help our fellow man/woMAN FEEEL BETTER.  It is human nature. We share anything that is good. We also share what is bad.  IF we take a therapy that made us worse. WE tell it from the mountain top. So why not share what works for us. We are in this together. No one wants to suffer.

I am NOT PUSHING my ideas on you. BUT I AM excited that something IS FINALLLY working. After trying EVERYTHING. And trust me I HAVE TRIED a lot of stuff.

I am just telling you. The ones who  have read my blog, for years and if you look on the side there in archives IT GOES BACK A LOOOONG WAY. The ones that  know me personally that have seen me in my darkest days, in a wheel chair, on a walker, Listened to me cry,  seen me eat UP with shingles, countless hospital visits, Teachers that have been there for us with our child, family that knows just what a rotten deal this has been KNOW how hard it has been.  I know we have many rejoicing with us and that are so happy right along with us and praying this keeps us. I want nothing more for this to be a forever thing. My goal list and bucket list is GROWING DAILY.  The things I am wanting to do … They are getting BIGGER!

So, What I am doing right now… There is something to this. Read this last post for more information. It is WOW.  YOU KNOW how skeptical I am. I have never believed in that no sugar and exercise stuff. If you do not believe me ask my friend Di,  that is a personal trainer and vegetarian. (she lives in Cali.)  She has been after me for yeaaaaaaaaaaars and I have blown her off. Ya she is grinning so big now.  When MY DR suggested me talking to Mike. I went in and saw with my OWN EYES. Felt it with my OWN BODY. I would have never in a million years believed it.

I KNOW this is a not a miracle “cure” I have worked hard doing this. I mean i have 43 years  to undo. 

I have had emails and messages people that have been coming at  me with negative like you would not believe from every direction.   They just inspire me to work harder. They obviously have NO CLUE what I have been through in my life and what I am made out of.  I thank them. Appreciate the motivation.  They are like gnats on a dirty dog compared to my real problems.  Opinions are like …. noses everyone has one.

When you have REAL LIFE to deal with. A disease and not just one  and been through some MAJOR life flipping stuff, will power is a necessity.   Can’t is not an option. Put that in your mind that YOU WILL do something. Don’t waiver. Keep focused.  If you are physically unable to move a body part.. use what you can to help you physically exercise that arm or leg.  keep it moving. work the muscle.  Don’t have weights. Do you have water bottles? soup cans? too heavy? empty them. start slow. 3 times is better than 0 times. Tomorrow DO it again. ANY KIND of movement is better than no movement. THIS should be an ms persons mantra. If you can even get it to move a little. That is progress. KEEEEEP MOVING. As long as you can. We have to fight for our right to MOVE! ( against our own bodies) No one is going to understand as much as our own self understands!!

Remember SUGAR IS NOT OUR FRIEND. Talk to your DR. If they will not work with you on finding a physical therapist that will work with you and your insurance or medical plan. Get a dr that will. or keep contacting your MS local office. Call a local church or office. THere are people that will help you.  DO NOT GIVE UP. YOU are your BEST advocate. IT only takes an ounce of will power. POSITIVE ENERGY WILL BREED POSITIVE.  YOU CAN DO THIS. Start eating healthy if for no other purpose but for yourself. YOU ARE WORTH IT.  If you are in the Mobile Alabama area. We have an MS group that meets on Tuesday and Thursday for nutrition and exercise. IT WORKS.  

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MR WILLIE works out he has M.S. and MANY other things wrong. HE is in an ELECTRIC WHEEL CHAIR. HE IS MY HERO.   .. He is one of a million reasons I get up smiling each day and haul my butt to that gym.  He is a huge inspiration among MANY MANY OTHERS that are there. I Work hard eat what they tell me to and keep at it.  TAKE THAT M.S.!!!!! WE JUST KICKED YOUR  TAIL AGAIN! For more information feel free to contact me and I will gladly get you in contact with the right people here in Mobile. 🙂 Keep moving

 

WISH BIG!

NancyJ