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

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 Randy and Susan Fedric

It is National Multiple Sclerosis Awareness month and I wanted to do something special on my blog this month.  I cannot think of anything more special than to introduce you to others that are more aware of MS every single day.  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 it. Please  (as 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’s post is going to be a little different. It is about a couple and they BOTH have Multiple Sclerosis. Yes you read this correct. BOTH of them.  Their story of faith and how they deal with this disease is truly glorious.  I have known Randy Fedric for some time. I will never forget when he told us he met Susan. Their love for the the lord and each other well. I just love em to pieces. They completely inspire so many and I just could not do any type of awareness without them. You will see why.

susan and randy wedding pic

Susan: “We met online… in an MS support group.

Randy was diagnosed in 2009 after going through over 8 years of symptoms. Susan  was diagnosed in 2010 after many years of weird symptoms. She also has fibromyalgia, so a lot going on kept being blamed on that.

Susan fedr and Randy

We have to go to a lot of doctor appointments. We have struggles everyday of some sort. That would cause a person to be in a cranky mood most of the time or mad at God because he allowed that to happen, but we don’t look at it that way. It keeps us closer to God because we have to depend on him. MS has deepened our faith in the Lord. We have to get to some point to where we realize that our complete and total value is on the fact that we are God’s children.

 

Susan andRandy MSWALKK

It is not how you look, it is not what kind of job you have, it is not what kind of house we live in, or what kind of car we drive, what size we are, or how smart we are. It is none of those things. That is what MS has shown me. I don’t have to be able to have the really good nursing job that I used to have to be something of value. My value is that I am a princess of the King, and that is it!. All the other stuff does not matter.”

Susan Fedricc

One of the  things Randy  realized since being  diagnosed with MS, is my ability to do things in the past. I could do anything. I could do construction, carpentry work, welding, and work on vehicles.

 

Randy fedric

Now, I am not able to do the things the same way I used to do. God has shown me that I depended a whole lot more on what I could do,  more than I depended on him. He helped me to realize that my dependence needed to be 100% him

Randy and Susan

Our advice to people out there that are newly diagnosed  and also for the warriors that maybe are having a rough time with this disease is to learn to pace yourself, learning to conserve your energy is a lifelong process, so as to stay active and not over do.

susan and randy MS WALK

Learning that when you have a bad day, it won’t last forever it is just that a bad DAY. Allow yourself to experience those days and talk about it. GET SUPPORT. Negativity is not a good thing for Multiple Sclerosis.  This is reality. No  person is an island unto themselves. Everyone needs a healthy support system.

Randy and Susan have  3 boys and 6 fur babies to keep them busy. In her spare time Susan enjoys making crafty stuff, from scrapbooking to other crafts it is great diversion therapy.” (I  agree with that Susan)

susan fedric crafty

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

MS Believe in the cure

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.

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

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.

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

do you know how much it hurts to say no

I know people with Chronic Illness get this.

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

hello nerve ending has been disconnected

Keep fighting! Never ever give up!

I’m …

“Still”

Nancy

with a Jones 🙂

She Scraps for Sanity?

Since the first of the year we have had all kinds of struggles to say the least. Multiple Sclerosis is that ugly little critter we keep hidden in the basement. WE KNOW it is there and can raise its ugly mischievous head at any time. Because of it, Viruses and such are so much easier to just knock me down sadly. I had done SO good. 2013 had been a GREAT year. 2014 started out EHHH kinda yuck. Some wicked stomach bug attacked me like kryptonite to superman. IT WOULD NOT LET GO. THEN because of the fever and Viral infection (Cue psycho music) out came shingles. NO I wasn’t upset about stuff. well some stuff, it was mainly the infection that caused it. SO I have been in my house back like the old days since January. A good reminder of how things were.

NO Driving No gym (can do a little at home but mostly stretching blah) … No going out into the world hanging out with friends… No church activities.. NO CHURCH much. I did get to go one Sunday before she shingles started then wham… out again. I do listen to it online but it just is not the same as getting to participate. I love our church so much. I had been feeling like A NORMAL person again. Like before. How quick the lord can remind us that we need to be ourselves and not try to be something we are not! And we all definitely know I AM FAR from normal.
HEY… I heard all the AMEN’S. YOU DID not have to agree so quickly to that! <grin>

SO what exactly have I been doing? I knew you all were sitting on the edge of your chair just wondering and just pacing the floor in angst waiting to find out. WHAT has Nancy BEEN DOING.

I have been scrapbooking.. yeah I know.
I have been doing the 2012 photos of our Disney trip which have really been bringing back good and also some sad memories. Most are wonderful but also make me miss Ma.
I have laughed so much but also shed so many tears. I have sooooo many photos to scrap.
I have joined a challenge group for February called L.O.A.D. (layout a day)
Where you do a challenge layout a day. I have done this before and it is soo fun. I have really been getting things done. I have 22 ish pages done so far. (some of them I did BEFORE I started this challenge group)
I wanted to share some of them with you. (I KNOW you cannot wait)  

These are phone photos so … (hey I have had shingles be nice!)

Image

 

Image

(I did these before LOAD)

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Image

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The silver circle things… those are wishes that Fairy Godmother gave us.

Image

This was from a sketch I found on pinterest

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first page in our Disney album

 

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another sketch

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photo of this layout didnt turn out so great (night time in my kitchen)

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Bella didn’t like this page.. she said it was boring.. and that I COULD DO BETTER. ha I will remember that dear child.

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Whispering Canyon (our favorite place to eat)

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Photos out and about around Wilderness Lodge where we Stayed. 

I have since I am feeling better, but still couldn’t quite get out yet, have started cleaning out, organizing, donating, and rearranging in my crafts and art space. I found lots of pages I made from when Bella was a baby.

I have learned some important things.

1. USE GOOD ADHESIVE. When I started I used glue sticks and whatever adhesive was cheapest. Those pages are now falling apart, missing letters, and I am now reattaching things and missing things off of them that I cannot find.

2. EVEN THOUGH alphabet letters have adhesive on the back of them.. GLUE THEM DOWN ANYWAY. Especially things like self adhesive chipboard letters or embellishments. I have so many that are missing that there is no way I can match them again. Some of these are 8 and 9 years old. I will just photo them and pray someone has hoarded the few letters I need and pray they will share. MOST scrappers are nice that way 🙂

3. KEEP YOUR FINISHED PAGES IN SCRAPBOOKS WITH PAGE PROTECTORS (that way if the embellies fall off you have a good chance they will fall off into the page protector!!) although I did on some of these but they were put back upside down and fell out of the page protectors…sigh.

4. KEEP RELIABLE glue and or adhesive YOU KNOW  is reliable and dries quickly at hand so when you look through your albums. You can make quick repairs. DO NOT put it off till later. YOU WILL FORGET and then the letters will be lost. (yeah it happened)

5. IF YOU DO NOT HAVE ALBUMS for your pages at least put them in page protectors and put them in a safe place. I found a STACK of layouts (yes at least 20) that were a couple years old in a shelf. just stacked up there.  YA NOT GOOD. buttons had come off the edges were bent up. I was NOT happy. 

I AM SURE there are many more tips you all have learned that you could add to this. FEEL FREE to add them in the comments. Things you have learned over you’re years of scrapbooking. Care wear and tear of pages, mini albums etc.  I welcome your advice. 

I am sure we have some new crafters or even those that have been doing it a while that may learn something. 

 

 

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)                                                                                                                                    me john bella at the beach 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

checkers with daddy

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!
helping mom eat healthy
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.

charlie and bellabug bw

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.
so Do you have a happy place?
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                                     .

face i get when daddy and I are singing and dancing

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.

dancing at the electical parade
This is only temporary. You are forever. We are forever. Us 3. No matter what comes up we got this. no worries Bella and lulu chillin
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!
fun charley pictures