How I really Know he loves me….

When you have been married a while, and you get used to each other, The flowers don’t come rolling in like they did when you were dating. Its true. You get used to each other yes you still love each other, very much so. Things settle down and you become friends and KNOW each other. You learn each other like what really makes em mad, what really makes em happy. My husband and I got the rare date night last night.

I have not done well the last while and have not been up to doing a lot of anything. Finally they have changed my medicine and a light switch went click in my brain and things are working again. It is like a fog has lifted and I can think clearly again, Im not walking around in a daze anymore. I feel awake. I’m not muddling through the day anymore trying to stay awake.  My metabolism is coming back to normal and  I AM PrAYing I can get back to the gym soon. I MISS my gym time.

I had to buy fat clothes. bigger than my normal fat clothes. my husband loves me he really does. He consoled me as I  teared up buying these fat pants saying they said it was your medication. IT will come off. I know  this but it helps hearing the one you love most say it too. IT is hard sticking to a clean diet when medication is making you blow up. it also makes you want to eat the side of a concrete house given enough ketchup. you don t care. chomp chomp coming throughhhh!

The good news IT will come off the other symptoms we were scared of they are going away too  PRAISE GOD!!

We finally got a date night! Bella went to a church thing last night. we used a gift card and went out .. TO EAAATT. yes.

It was good. We do this rarely. I don’t gooooo. we get these gift cards and we love them because its a treat. We never go just us. we have no family here We have awesome friends that their daughter Bella is friends with we are switching out  with we need to take our turn now and let them go do something.

My husband suggested since it was on the menu MY FAVORITE…. KEY LIME PIE. I think im getting HUGE nothing fits I dont need this. He reads my mind and says. “WEIGHTS COMING OFF GET THE PIE we never go out” Oh you tempter…Ill have 3 bites you eat the rest? Deal? I stuck to my word.

I ate half my dinner brought the rest home for next meal or to Bella. I did good.  Then today we had to go to sams.. Great exercise

We then go to the little vegetable stand. Hubby points out.. Boiled peanuts. HE and Bella are both allergic. I on the other hand.. LOOOOOVEEEE THEM… He says,”Get them it will be ok, Ill be outside eat in the kitchen, its a treat ” I havent had any in for ev er.

I get a small cup….. omgosh. the memories. reminds me of home and summer growing up. I had the biggest smile. I wanted to kiss him but …. I didn’t want to kill him. so i just kept grinning. He smiled at me and said he was happy to see me enjoy them. Its funny the things that make our moods go which way and what brings memories out in us.

HE is allergic to peanuts but knows I LOVE THEM so tells me to get them and smile over there so you can enjoy them I will watch and see you smile because  that will make him happy…..

this is love. it doesn’t really have anything to do with peanuts its anything.. its loving someone enough you want them to be happy.

I do the same with shrimp for them. Im highly allergic but I open the windows I take benadryll because they love it. I want them to enjoy it.  I had never thought about something so small as a way of showing love until the peanuts today .

He shows me every day in a million tiny ways how much he loves me. some men bring flowers home to their wives and shower them with luxurious gifts I guess thats nice.  but I have so much happiness and smiles cuddles and occasional dates,

popcorn and boiled peanuts. That’s good enough for this girl. You have to know how to recognize it. continue to show love be an example and gross out the kids. its good for them 🙂

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MS AWARENESS~ Kim Johnston – Hocutt

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

 I remember driving down the road one day when all of a sudden my legs, and my forearms started cramping so bad it terrified me, my hands went numb, I immediately pulled over and called my Doctor, he told me to get to his office right then. He knew that he, and other Doctor’s had spent years trying to figure out what was wrong with me.

I had been tested for lupus, narcolepsy, rheumatoid arthritis, heart disease, and on, and on. When I got to his office after experiencing terrible leg cramps, leg weakness,and pain all over for years, he said, “I probably shouldn’t tell you this but I think you may have MS, I’m going to send you to a neurologist.” I was stunned of course, but after years you start thinking you might be a hypochondriac, so I went to the neurologist.  All of his initial tests indicated a high probability of MS, but he was not convinced. He gave me medicine for numbness cramps and pain, and I went back to him monthly with worsening symptoms each month, he was still not convinced.

   In early March 2012, my mother was diagnosed with pancreatic cancer, she was to have surgery on March 27th, so I took off work and said I would be back when I knew she was ok. I noticed at the hospital my legs hurt worse and worse, and got weaker and weaker.  I thought it was because I had been off work for awhile. I started taking the stairs instead of the elevator, (BIG MISTAKE), that only made it worse

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Mom had her surgery, was in intensive care almost dead for 9 day’s, she recovered and went to rehab, she had been there a week when her Doctor told my dad and I that she was dying, and that we should call Hospice and let her come home.  We did just that. We got her home and they let me take care of her, I asked if I could, by God’s grace I did, she was with us for 12 more day’s. She died surrounded by her 5 son’s, myself and my dad, her husband of 58 years.

 I told all of that because, 2 weeks later I was paralyzed on my left side, my eye’s got so blurry I could not see, I lost all control of my bladder, my legs were in excruciating pain, and I could not swallow food or liquids,I was rushed to my neurologist, he was convinced, they did an MRI, and a spinal tap. I was finally diagnosed. I decided on the advice of my Doctor to go to an MS specialist, she is convinced based on my history of symptoms, that I have had it since at least my late teens, so I was diagnosed in June 2012, I was 46.

       I would say to anyone newly diagnosed, try not to panic it does change your life, but it can change in good ways, I have met so many wonderful, strong, funny people through this, I am in support groups that are awesome. We laugh, we cry together, but we laugh more than anything!

If you are going through a rough time, I would tell you don’t hesitate to reach out to someone, your Doctor, your best friend, anyone you need to. If you need to cry, scream, get mad, do it and then let it go, you will still have great day’s ahead!

 

I will say that I have my ups and downs, good day’s, and bad day’s,but I have wonderful friends and support and best of all my two sons, Matt, and Denton.

They give me so much love and support. They keep me going when I don’t want too. I am so blessed .Matt is 26, married to my beautiful, sweet daughter in law Mandie, expecting their first baby,(my first Grandchild),September 23rd.

My youngest son Denton is about to be 21, he is in the Navy, a Hospital Corpsman.

I am so proud of both of them. So in spite of MS I have a wonderful life, and look forward to all of the great day’s ahead!

~Kim

Kim truly is an awesome person, amazing friend and true MS WARRIOR. I have had the pleasure of meeting Kim and spending time with her. She came down during Mardi Gras to visit a friend she has here in Mobile. While she was here she visited with me also. I was really sick recovering from a flare and shingle outbreak, from the steroids and was not great company.  She cheered me up so much and kept me laughing.   I really think she helped me recover faster. I can never thank her enough. Just being there when I was so down.  That’s the kind of friend Kim is.  She has been through so much but still took the time out to be there for me. Well for us. We all needed that. I know Bella talked still talks about Mrs Kim and her dog. (charley still looks for Twinkle ha)   I can never thank her and her know just how much it meant to me and my family.   I hope to get to meet some other people  from our M.S. group eventually.  Thank you kim  I hope You know just how much we love ya and Twinkle too! (Charleys Best friend)  haha  God truly has Blessed me with some awesome friends ~ Nancy

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: 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.

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.

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

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

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.

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.

*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.

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,

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.

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  🙂

Nancy J

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MS AWARENESS TINA DUE

My story begins 16 years ago, in March of 1999…

My left foot became numb and gradually worked its way up until my entire left side was completely numb. Within days I had double vision and couldn’t walk a straight line if my life depended on it. I eventually ended up in the E.R. where they immediately set me up for an MRI. That first MRI showed one lesion on my brain stem.
My second MRI, in July, also showed that same lesion but it had gotten bigger. Still just one lesion, so it wasn’t “multiple” sclerosis.
Throughout the year I continued to experience different symptoms, such as choking, weakness, vision problems, etc.

In December 1999 I had another MRI and a spinal tap done. They both came back possitive for MS on December 17th. I now had 12 lesions.
So, it didn’t take long to get diagnosed, but now that I know what MS is and what the symptoms are, I know I had it in high school 33 years ago.

Needless to say, my life has taken a dramatic turn since then. I was working two jobs when I was diagnosed; within two years I was on disability.
My youngest daughter, now 20, doesn’t remember me without MS.

Seven years into the disease I found out I have PRMS.

No matter what form of MS you have the biggest thing you can do for yourself and for your MS is LISTEN TO YOUR BODY!  If it’s tired, rest. If it wants sleep, go to bed. If it’s weak, sit down. Fighting it will only make it worse.

Everybody deals with MS differently, but I survive it with humor. I love to laugh!

I have found support from different sources. The National MS Society, seminars, different groups online, etc. Just keep looking until you find where you’re comfortable and where you fit in.

My life is amazing! Even with MS.
I have two amazing daughters, both in college.
I have met, and now live with, an amazing man.
I have wonderful friends and family.

I AM A VERY LUCKY WOMAN!

Just remember that MS doesn’t end your life, it just changes it.

Good luck to you all!
Tina

Tina has a wonderful story of courage and she does have an amazing sense of humor. She keeps everyone laughing. I know with a recent visit I had with a friend we took her picture and made a flat version of her. We took pictures doing all kinds of things (even going to get yogurt and picking my daughter up from school) It was hilarious and so much fun. It cheered me up when I was so sick and she was a great sport, laughing the entire time. She is always the first one to laugh and crack jokes. She may not know this, but she is a huge inspiration to so many of us in our group of peers. ~ Nancy

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

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!

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!!!

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.

 

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!

 

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: “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.

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.

 

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.”

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.

 

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

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.

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)

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 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

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.

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 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

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

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)

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!!

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..

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.

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!!

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 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.

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”

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.

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 will be 18 on March 19, 2015.

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

Nancy Jones

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