jjohnson

Life is a gift we're given each and every day. Dream about tomorrow, but live for today. To live a little, you've got to love a whole lot. Love turns the ordinary into the extraordinary. Life

1. TODAY I WILL NOT STRIKE BACK

Asha: Just wanted to share with you that telephone ministry I have been doing since I came home and was able to speak, etc. Since I can no longer drive, this has been a way I could still be involved. I have people calling me and asking or my help with cancer, stroke, etc. I had established myself in my community through my work with cancer and muscular dystrophy patients. I am so glad that came into my life because I truly didn't know what or how I would still be able to do my volunteer work. God gave me the opportunity to still do that service for others. Helping others is in my blood. Since 1971 it started. So, the Beast, STROKE didn't take the best part of me. I just keep Believing in Miracles and SOAR.....

Wow, yesterday was a day of love, surprise, and a special phone call. I had gotten up and placed Wayne's Valentine's gifts on the table which is his routine every morning. He sits there and reads the paper while drinking his coffee. He likes to play the lottery and I had found some really special lottery tickets which said love, love, love on them and you would think they were real. They looked identical to a real lottery ticket. He said, wow, where did you get these? I told him when I was out the other day I saw them and had to get you some as you enjoy playing the lottery. He got a coin to scratch them off...... They said if you get three "lips" three of this and that then it said what you won. One thing was kisses forever, one said a massage, and so on. He said how do I redeem these? and we busted out laughing. I told him I'm sorry he didn't win the lottery and he said But I did, I have you.... that was the sweetest thing. It really touched my heart. He liked his gifts from Harley and me. My friend, kathy, stopped by and brought me beautiful roses. she knows I love flowers. She brought some adorable Valentine Cupcakes. Then the highlight of my day was calling her Brother, George, at the hospital and spoke with him. He has been in the hospital for quite a while and then in rehab. He is back in the hospital with congestive heart failure. What was so awesome about all of this is I was able to speak with him about keeping HOPE in his heart and about his feeding tube and swallow studies, I have been down the road he is down now and I got him to laugh and open up. I had the phone on speaker phone so Kathy could speak with him as well. I had sent some gifts up with Kathy as she was going to see him later on in the day. I asked him if he would like me to call him again and he said yes, he would like that every day because I know what he is going through. Kathy said that is the first time he has opened up like that with anyone. I felt the meaning of the day "LOVE" ..... to share with others. I was so happy because volunteer work is such a big part of my existence. I thanked God so very much. It is so much better to give than to receive. My neighbors two children stopped by to visit and I had a blast with them. I love children so much. My Grandson, Christopher, didn't get his girlfriend, Megan,all of 19 days a ring. His Mom told him it was way to soon. He is 15 and she will be 17. He got her a stuffed FROG as she loves FROGS.... ummmmmmmm. maybe after their first "kiss" dare I say that or even think of that????? she finally got her PRINCE???? She is cute but I just can't believe the pictures. Shelly, Chris' Mom, had taken like 14 pictures of them and we finally got them. I just sat in my chair and was seeing a totally different Grandson, it wasn't my lil Chris anymore. Here he is in this picture with a girl hugging him and he her. He never liked that sort of thing. NEVER, how times have changed. They are holding hands in one picture, She has both her arms wrapped around his neck, Wayne and I kept saying He never liked stuff like that. We both agreed he's not our baby anymore. I just hope he doesn't get hurt. But hurt is part of life. All emotions are part of our journey in life. He will learn and take away many thoughts and memories I know . But, if he does get hurt or upset and needs to talk things out, he always comes to his Mom Mom and Grandpop. We have a good relationship. The most thoughtful gift I received last evening was when my Harley Boy came to me and was dancing all around me, I asked him if he had to go out..... but it wasn't that, I asked him if he was hungry, not that, I asked him if he just wanted to play, no, that wasn't it either. I finally managed to get up and follow him to see what he wanted, You will not believe this ...... but, it is the honest to goodness truth...... He went to the side door, I opened it and let him out. He would not go down the steps to do his business. He just stayed on the porch, and looked up in the dark sky. I followed his lead and looked up at it as well. Then, all of a sudden I saw the most beautiful full moon I have ever seen. It was like a bright orange/yellowish It was so breathtaking. I felt Harley had ordered that just for me. It was something I will never ever forget. My precious Harley Boy. I just adore him and love him so much. Then, after my gazing was done, he went down the steps and did his little business. He wouldn't even go in the house without me. He just sat by me as I did my Moon gazing. It was so special. He is my lil snuggle bug. He checks on me like clockwork. He just comes in to my room as I am watching television and will back himself up so I can pet him and he then lays on my feet and keep me company. You know if I hadn't had this Brain Stem Stroke, there would never had been a Harley. So my biggest blessing is Harley. I traded having a Brain Stem Stroke for my Harley. I think I won out the best. If it wasn't for the stroke, I wouldn't have my NetWork friends. So in the bigger scheme of things, I won out. It's all how you look at it. Well, Valentine's Day has come and gone, but I keep LOVE in my heart at all times, Do you? Would you like to join me? Let's start a new revolution here and now, Let there peace on earth and let it begin with us. Let Love take place of hate, Let Love gives us all that we need. Let's all get by with a little help from our friends. Let us not hate ourselves for what the Beast, Stroke, tries to do to us. Take our happiness, our well being. Let the Love of friends and family in and let the peace, joy return to our lives. Well, that sums it up for today. Thank you for stopping by. Have a blessed week. God Bless, Hugs, n Love, Jan Believe In Miracles And SOAR :hug:

am so happy for you..... having those dreams come true those goals and then achieving them, you are just proof to other Stroke Survivors, those old times, those new comes, doesn't matter what phase you are in with your journey, seeing this and hearing about this miracle, you have just proved to them.... HOPE, hard work .... it all is worth while. I shall name you the "Lance Armstrong" of our StrokeNet Group. You go, you have given hope to others. I always have said: "There's Nothing To It but Just Do It" "Believe In Miracles And SOAR" well, Wes, you "ROAD" I am so proud of you and you have given inspiration to so many by your achievement. God was the wind beneath your wings. I bet your family is celebrating with you aren't they. I thought I heard a lot of cheering yesterday. Can't wait to hear you signed up for the "Tour de France". We could all take a road trip and cheer you on from the side lines. What ya think? Hugs, Jan :Clap-Hands: :Angel: :You-Rock: :cheer: :congrats:

Grandmas are moms with lots of frosting. ~Author Unknown What a bargain grandchildren are! I give them my loose change, and they give me a million dollars' worth of pleasure. ~Gene Perret Grandmothers are just 'antique' little girls ~Author Unknown Perfect love sometimes does not come until the first grandchild. ~Welsh Proverb A grandmother is a babysitter who watches the kids instead of the television. ~Author Unknown Never have children, only grandchildren. ~Gore Vidal Becoming a grandmother is wonderful. One moment you're just a mother. The next you are all-wise and prehistoric. ~Pam Brown Grandchilden don't stay young forever, which is good because Grandfathers have only so many horsey rides in them. ~Gene Perret When grandparents enter the door, discipline flies out the window. ~ Ogden Nash Grandma always made you feel she had been waiting to see just you all day and now the day was complete. ~ Marcy DeMaree Grandmas never run out of hugs or cookies. ~Author unknown Grandmas hold our tiny hands for just a little while, but our hearts forever. ~Author Unknown If I had known how wonderful it would be to have grandchildren, I'd have had them first. ~Lois Wyse My grandkids believe I'm the oldest thing in the world. And after two or three hours with them, I believe it, too. ~Gene Perret If becoming a grandmother was only a matter of choice, I should advise every one of you straight away to become one. There is no fun for old people like it! ~Hannah Whithall Smith It's such a grand thing to be a mother of a mother - that's why the world calls her grandmother. ~Author Unknown Grandchildren are God's way of compensating us for growing old. ~Mary H. Waldrip You do not really understand something unless you can explain it to your grandmother. ~Proverb An hour with your grandchildren can make you feel young again. Anything longer than that, and you start to age quickly. ~Gene Perret <FONT< SPAN> The best baby-sitters, of course, are the baby's grandparents. You feel completely comfortable entrusting your baby to them for long periods, which is why most grandparents flee to Florida . ~Dave Barry I wish I had the energy that my grandchildren have - if only for self-defense.. ~Gene Perret Grandmother-grandchild relationships are simple. Grandmas are short on criticism and long on love. ~Author Unknown Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children. ~Alex Haley Grandmother - a wonderful mother with lots of practice. ~Author Unknown A grandparent is old on the outside but young on the inside. ~Author Unknown One of the most powerful handclasps is that of a new grandbaby around the finger of a grandfather. ~Joy Hargrove It's amazing how grandparents seem so young once you become one. ~Author Unknown If your baby is 'beautiful and perfect, never cries or fusses, sleeps on schedule and burps on demand, an angel all the time,' you're the grandma. ~Teresa Bloomingdale Grandparents are similar to a piece of string - handy to have around and easily wrapped around the fingers of their grandchildren. ~Author Unknown What is it about grandparents that is so lovely? I'd like to say that grandparents are God's gifts to children. And if they can but see, hear and feel what these people have to give, they can mature at a fast rate. ~Bill Cosby Grandchildren don't make a man feel old; it's the knowledge that he's married to a grandmother. ~G. Norman Collie My name is: MomMom Nothing would brighten my world more than being called by my precious, Christopher, Ryan, , Trenton, RJ and hopefully Ryleigh will talk soon. I can't rush it as her first Birthday will be in May. I will never forget the first time each lil one was placed in my arms for the first time and when our eyes locked into each others. What a gift from GOD. It's his way of saying "Life goes on".

:friends: One day a young man was standing in the middle of the town proclaiming that he had the most beautiful heart in the whole valley. A large crowd gathered and they all admired his heart for it was perfect. There was not a mark or a flaw in it. Yes, they all agreed it truly was the most beautiful heart they had ever seen. The young man was very proud and boasted more loudly about his beautiful heart. Suddenly, an old man appeared at the front of the crowd and said, "Why your heart is not nearly as beautiful as mine." The crowd and the young man looked at the old man's heart. It was beating strongly, but full of scars, it had places where pieces had been removed and other pieces put in, but they didn't fit quite right and there were several jagged edges. In fact, in some places there were deep gouges where whole pieces were missing. The people stared -- how can he say his heart is more beautiful, they thought? The young man looked at the old man's heart and saw its state and laughed. "You must be joking," he said. "Compare your heart with mine, mine is perfect and yours is a mess of scars and tears." "Yes," said the old man, "yours is perfect looking but I would never trade with you. You see, every scar represents a person to whom I have given my love - I tear out a piece of my heart and give it to them, and often they give me a piece of their heart which fits into the empty place in my heart, but because the pieces aren't exact, I have some rough edges, which I cherish, because they remind me of the love we shared. Sometimes I have given pieces of my heart away, and the other person hasn't returned a piece of his heart to me. These are the empty gouges -- giving love is taking a chance. Although these gouges are painful, they stay open, reminding me of the love I have for these people too, and I hope someday they may return and fill the space I have waiting. So now do you see what true beauty is?" The young man stood silently with tears running down his cheeks. He walked up to the old man, reached into his perfect young and beautiful heart, and ripped a piece out. He offered it to the old man with trembling hands. The old man took his offering, placed it in his heart and then took a piece from his old scarred heart and placed it in the wound in the young man's heart. It fit, but not perfectly, as there were some jagged edges. The young man looked at his heart, not perfect anymore but more beautiful than ever, since love from the old man's heart flowed into his. They embraced and walked away side by side. Give A Piece of Your Heart Away This Valentine's Day! You've Touched My Heart You've given me a reason For smiling once again, You've filled my life with peaceful dreams and you've become my closest friend. You've shared your heartfelt secrets And your trust you've given me, You showed me how to feel again To laugh, and love, and see. If life should end tomorrow And from this world I should part, I shall be forever young For you have touched my heart *************************************************************************************************************************** We meet very few people in this lifetime Who touch us as deeply as those who... Listen to us without judgment unconditionally encourage us Support our hopes and believe in our dreams Fill our lives with so much joy And when I hear others speak so excitedly about such friends... I immediately think of you! So I want you to enjoy this special Valentine bouquet Because I cherish our friendship each and every day. Happy Valentine's Day! God Bless, Love n Hugs, Jan Believe in Miracles and SOAR The Greatest Love I have in my life is that from GOD Remembering Valentine's Day, by Steve Brumfield Okay, guys, stay with me here. I understand and am well aware that nobody wants advice, but would like to offer up some thoughts about my favorite holiday ... Valentines Day. I know, this is dangerous territory for guys, since many consider Valentine's Day to be a holiday created for women and by women. But my experience is a little different, but it really is my favorite holiday. For a number of years, I would get my wife candy and flowers. Sue liked the candy. However, she did not like the cut roses. After all, they were cut -- they were just dead flowers to her, plus they charge twice as much for the "dead ones" as they do for live ones. So about ten years prior to her death, I started doing silly things ... small things. For about ten years, I had gotten Sue a stuffed singing something -- most of these were simple stuffed animals that "sang" a classic song of some kind. One year it was a mouse dressed up in an evening gown with a little wig and microphone singing "Fever." Another year it was a Gorilla that sang "WILD THING." And on and on I had selected a new stuffed animal for each. It was challenging to come up with a new one each year, but fun at the same time. (Hint: I got most of these from Walgreen's.) I don't know what more I would have done. Sue liked some better than others; however, we saved them all. In February of 2007, I went to a Michael's crafts store in Cool Springs and got a bunch of stuff to decorate our mantle. I got all the singing stuffed things out from previous years and put them on the mantle -- I was sneaking around the house to do this at 2 or 3 in the morning. Then, I put the latest addition, a dog that sang "I Can't Stop Loving You" beside the coffee pot and a note telling her to go in and play cut six on the CD, a John Denver song, "For You." I also got a white shoe polish pencil so I could write things on the mirror in the bathroom and over the window above the kitchen sink. Perhaps you have a routine, perhaps not. My experience suggests that women appreciate thoughtfulness more than big gifts ... at least this was true in my case. So on Valentine's Day of 2008, I thought back with fondness on my precious wife and our life together, realizing that if I had known Valentine's Day 2007 would have been our last one, I don't know what more I would have done. Guys, let's not take for granted the preciousness of the ones we love and remember them in simple ways that say, "I love you!" --------- The above reminded me how we need to take life a second at a time, we never know when we will be called home, take each day to let those in your life know how much you appreciate and love them. I read this and it reminded me of my journey of 2003. I have tried since that journey to let everyone know how much I love them. Faith, Hope and Love, and the greatest of these is LOVE. Enjoy today. Love n Hugs, Jan

My Special Valentine People come and people go, In and out of our lives and so, We soon will see changes in our new way of life A Life after Stroke has occurred and we have become a "Stroke Survivor" When one shines bright among the rest, And is there when needed, we are truly blessed. That is how I see you, StrokeNet friend of mine, And why I

It was the first time I was able to get out of the house, WOW, actually getting out ... Yeah, I was so excited. Finally. Hadn't been out since my Birthday, 12/26. So, at around 12ish, Debbie called and said she was on her way over, she was going to have to walk up as her Son had her car, I asked her to wait to see if Wayne could go over and pick her up as she is only a few streets over which he did. I was up and ready to go. Got my shower, hair done and even did my makeup... look out world. I was on the loose I had gotten my purse, etc. and when Debbie walked in, I asked where was Wayne. He had taken Harley for a walk. So, I said, ok, well let's get going, I had things to do and people to see. As I was going out the front door, I thought, since Wayne wasn't here I would lock it, then a thought entered my mind, he does have his keys as he had just driven over to pick up Debbie. Then, it happened, that ole Brain Stem Stroke Cloud entered, did he tell me to lock it or not? I asked Debbie, do you know which way he went for his walk with Harley, maybe you could drive there and ask him .... to lock or not to lock, she said, Jan, you know he never leaves the door unlocked. Which is true, I thought after great thought. She said, let's get going. I had a lot on the agenda for the day. I wasn't sure ... should I or shouldn' I. I didn't know what to do. Oh well, I went ahead and just shut the bottom lock and pulled the door and said ok Debbie, let's book it. Just then, she turned and said to me, Jan, Wayne just yelled to me, "I hope she didn't lock that door." Debbie poked her head to me, and said, Oh My Gosh, Jan, Wayne just said, hope she didn't lock the door. ......................................... I got so upset. he said, I told her not to lock the door. I promise you, He never said that. I don't remember him ... I shared with him, I have tried over and over again, to explain to him the damage from my Brain Stem Stroke, he doesn't buy it. I have asked him, suggested to him, please look at the messages from other Brain Stem Stroke Survivors, Wayne, things I am going through, what you go through as my Caregiver are all listed there. He won't look. It sure would make my life easier if he would just give it a shot. I have printed out things from time to to time. Then, we stopped at the Bank to make my deposit, then we headed off to the Circuit City as they are going out of business and I needed to get new batteries for my camera and I wanted to look at the tvs as Wayne's is on the way out and I wanted to do something nice for him. I always try to do something nice for him.... plus, The guy was not helpful at all, He wouldn't look straight at me and kept going side to side, etc. I finally asked if he would please try to accommodate me like I had asked him to, I had shared the reason why I can't see properly, the blindness due from the Brain Stem Stroke and that I need him to stand in one spot and look at me directly.... nope couldn't do that. All he wanted to do was make the sale and move on. He got me so disgusted with him, I just said to Debbie, let's just roll.... He said aren't we going to seal the deal, I polietly basically just let him know ... nope, no seal of your deal. You wouldn't give me the time of day and try to accommdate me, therefore, I am moving on .... I am glad I had the courage to do that. Maybe, for the next person in a wheelchair and Brain Stem Stroke or disability of any kind, will get better service, we deserve that. He was just a jerk. He would go to other able bodied people and help them while he was suppose to be helping me. Not considerate at all. I didn't need to take that from him. I deserve better. Next stop was getting my nails done. No major upset there. Except I started dozing off while they were under the dryer and all of a sudden out of no where, there was banging on the window.... I didn't know what was going on, people were yelling, why were these people banging on the windows All the employees there are from VietNam, very nice people, however, very quiet. So different from us. It ended up being my friend, Debbie's son, Eric, and he saw my car (hard to miss, has a big lift on the back, and he wanted to stop by and say hello and let me meet his new girlfriend. He is a real cutup anyway, but the owner, Jimmy, wasn't real happy about him banging on the windows. He was doing Debbie's nails and he asked her who that was. She told him her son and that he just loves Jan, etc. It was a nice visit and I like his girlfriend. It was nice meeting her. Next stop, lunch. Had a nice lunch. Then it was time for my haircut. Karen did a great job, like always, but I had to hear Debbie complaining, I don't know why you just don't go and get a ten dollar haircut like where I go. I explain to her like I always do, Debbie, I have been going to Karen for over twenty years, I love the way she cuts my hair, When I was in rehab, and when I am too bad not being able to get in she will come to my house to cut my hair. She came to my house the morning of my wedding and did my hair. She is a very Good friend and like a family member. Those type of people are special and we are blessed to have them in our lives. Then I have to listen to Debbie's "she doesn't cut that much off, thing is, they sweep it all up as she is doing it. So, it's not all in one spot, I know how much she takes off, even Wayne said wow, she took a lot off. Thing is with Debbie she is negative. That is the one thing I don't care for. But, if she doesn't take me, then I don't get out. On the way home, I asked her, do you think we could go around the Bay, it's only a half mile from my home, NO, she said. I was a little upset by that, Well, I was shocked cuz when I got home, I sat outside for a bit and just enjoyed being out. I got up to get in the house and wayne said what are you doing and I said, going in. he said don't you want to see the Bay? He said I was coming out to take you .... so we went. He had asked me if Debbie took me there and I said no. Harley,Wayne and I all went for a quick drive to the bay and back. Guess that was my Valentine's Day gift. hehehe I think maybe while I was gone he reflected on what happened and how he went off the handle at me. Debbie said he was quite upset and even used the "F" word and she has never heard him say that. It was a real mess, Praise God, he found a screw driver in my trunk of my car and used that to try to get the door open, it opened and then Isaid: Wow, guess our house isn't that burglar proof is it if you can get the door open quick like that. He said well you only locked the bottom lock not the double bolt, etc. we have three locks on the front door. Thank goodness, I only did the bottom one. Guess the ole brain led me to the bottom one. Maybe I still have some smarts after all. hehehe When we were at Circuit City, she got out to get my wheelchair, and the wind was very strong yesterday. Very powerful, and it blew and the door shut and Debbie was leaning over the seat and yelled Jan, why didn't you catch the door, I tried but it was a little too late. She made a big deal that her foot was hurt from the force of the wind. I felt bad but I really thought it was a little big to say how hurt she was. I told her I was sorry. She shouldn't have been leaning over like she was. She could have walked to the side of the car and opened the door and gotten what she needed. Oh, well, I am greatful I got out. A mixed day of events. Once again, the stores we went to, nothing but boxes all stuck in the middle of the aisles and we couldnt' get through and she was yelling so loud, people just stared. Like saying LOOK have a disabled lady in the wheelchair who got get around... you know? I was embarrassed and asked her Debbie, why not just go to the counter and ask for them to move the boxes. NO, it isn't right and they should be aware that people in wheelchairs do come there to shop. We may be disabled but we still can shop til we drop. I've told the assistants before, yep, that's how I ended up in my wheelchair I've shopped until I've dropped. I wish Debbie would be happy and more positive. The one thing she and Wayne don't realize or won't realize should I say is: They will NOT come to my side of the car and help me out. My Brain Stem Stroke affected my right side and I need help getting my right leg in and out of the car. They always tell me, it's been five years now, come on and get out. DUD, I need help. and then I think, while they are complaining, you know I was 100% paralyzed, it is a blessing I can do what I can do. So, you think you can help me out here? I don't know, I try to focus on the positive, I got out. and for that, I am so greatful for that. Thanks for letting me get all of this off my chest. Hugs, Jan Believe In Miracles and SOAR I won't let people or events steal my joy in life.

Dear SillyBunny: I am glad you are here with us. You have found a place where you an come and share your ups and downs. We don't judge one another, only God can do that. You shared some very deep thoughts questioning why are you even here. Everything you stated, I felt and said the same thing. I am a Brain Stem Stroke Survivor. That last word SURVIVOR, that is what you are. Take it and embrace it. You are here, like I and so many others here, because it wasn't our time to go .... When things seem so down and you are just feeling you can't go on another day, that is when You have to pick up yourself and say to yourself, I had the stroke that beast doesn't have me. Don't give in to the Beast. No, we don't like it, but it happened. I choose not to waste precious time giving in to it. I fought way toooo long and hard to beat the odds. I was on the edge of death more than once during my battle. My work on this earth isn't done yet. There is a reason I survived. Has my life changed? YES A MILLION PER CENT. But, I can still make contributions to society. I am on this journey to learn lessons and share with others. I am praying for you. Take life a second at a time. God, Grant me the serenity to accept the things I can't change, the courage to change the things I can and the Wisdom..... There's nothing to it but to do it Hugs, Jan Believe In Miracles and SOAR :friends: When in doubt, look up

:bookread: Hi, Thanks for stopping by. In 2003, I was asked to be part of this article for MDA to be featured in their 2003 QUEST Magazine. I found it and reread it this morning. It was done in 2003. I wanted to share it here in my Blog as I know there are a few here that have Myasthenia Gravis and if I could help them in any way, I wanted to do so. It was a real shock to me to look at the dates of this interview and realize I stroked not long after the interview. It was something to read my hubby's responses.... a lot to reflect on. Here is the interview. *********************************************************************************** QUEST Vol 10 No 3 MAY/JUNE 2003 To Stand Together or Fall Apart How a Marriage Weathers a Neuromuscular Disease by Tara Wood Jan and Wayne Johnson Photos by Stuart Zolotorow A marriage is like a building. The structure can be weakened by lack of maintenance, or improved with attention and work. Add a serious health problem, and the building must weather a heavy storm. If the foundation isnt strong, the underlying imperfections might grow and spread from the force of the storm, ultimately rendering the structure so fragile it falls apart. Or, the partners can use resources like love, support and determination as the cement to hold the structure together, and maybe even to build a better building. Here are stories of how five men and women served by MDA handled the marital issues and challenges that arose when one partner was found to have a neuromuscular disease after being married. While each relationship is unique, these spouses have learned lessons that can translate into valuable advice for any couple. "We Had to Reinvent Our Life" For Jan Johnson, receiving a diagnosis of myasthenia gravis in 1998 marked a major turning point in a frustrating, multiyear odyssey of perplexing and debilitating health problems, medical tests, treatments and misdiagnoses. But while the definitive diagnosis answered many questions about symptoms shed experienced since the 1970s, it wasnt the magic bullet shed been praying for. The bubbly 52-year-old from Churchton, Md., hasnt been able to bounce back fully to an active life filled with volunteering, a career and a marriage to husband Wayne. Johnson, Marylands MDA Personal Achievement Award recipient for 2002, said the ultimate diagnosis came about a year and a half after "the Lord put a wonderful man in my life" and she remarried in 1996. It was the second marriage for both: Wayne had been divorced for 16 years, and Jans first husband had died suddenly in 1992. But during a time that should have been filled with newlywed bliss, Johnson was plagued by extreme fatigue, droopy eyelids and slurred speech, and was so weak at one point she couldnt even brush her hair. "My life as I knew it wasnt there," she said, and her frustrations were compounded by guilt that she was dragging Wayne through difficulties he didnt deserve. "This was supposed to be a happy time for him," she said. "When I was so sick I would tell him, I dont want you to feel trapped. If you want out, please go. I didnt want him to have a miserable life." Wayne chose instead to remember his marriage vows. "When you get married, it says for better or for worse. You just have to deal with it, and it gets hard at times," he said. Johnson has dramatically cut back on her volunteer work for children and families affected by cancer, including hospital visits and running a family camp retreat. She was also forced to discontinue performing as Sunrise the Clown, give up a job that she loved doing security for Raytheon Missile Systems, and take disability income. "The only thing that really helps me is rest, and I cant be around people who are sick" because her immune system is compromised by the drugs she takes for MG, she said. Johnson also underwent a thymectomy to treat her disease. Wayne, a central office technician for Verizon, sometimes has to do more than an equal share of housework when Jan isnt feeling well. He also took a cut in pay when he transferred to a Verizon office closer to their home. "Its caused a lot of stress in our marriage because my husband has to be the chief bottle washer and cook and everything," she said. Wayne says Jan "does what she can" when she's able to. An ongoing challenge is not being able to plan things, such as trips or outings, because of the unpredictability of Jans disease. "We'll plan to do something, so he'll take off of work. Then that morning comes and I cant even get out of bed," she said. LESSONS LEARNED The eternally positive Johnson strives to focus on what she still can do. When her health allows, her volunteer efforts now include extensive activity with MDA (she was designated Maryland's 2002 MDA Adult Goodwill Ambassador) and creating awareness about myasthenia gravis. She hosts educational sessions about the disease for paramedics and other health care workers. The couple relies on their love and open communication to get through times in which they sometimes verbally take their frustrations out on each other, Wayne said. "We get upset at each other about things, but we talk it out and get it straightened out," he said. Jan still grapples with not "overdoing it" when she feels well and, as she puts it, with having the disease, not letting the disease have her. She also gathers strength from her religious faith, benefits from monthly counseling sessions, and spending time with her two stepdaughters and four grandsons. Having myasthenia gravis "has changed my life greatly, but we just have to reinvent the life," she said. ********************************************************************************** Four months after this was written, I ended up with my Brain Stem Stroke. Who would ever have thought it.... not Wayne and I. With life, we just never know....what the next second, minute, hour, will bring do we? "It doesn't matter where the train is going, What matters is deciding to get on." This statement is one I think of almost every morning. I want to get on the "train" .... I want to join the "human race" for this day. Not sure what stops the train will make today, but, I am willing to get on and find out. I hope we go straight through the town of Sadness and confusion, Negativity(let it be replaced by Joy, Happiness and lots of Positive Energy) HOPE, FAITH, LOVE, FRIENDSHIP. God is my conductor and he likes to take the Train to nice journeys. Believe In Miracles And SOAR

I am sorry for the way you are feeling. The only thing that truly helps me when I am feeling what you are explaining is prayer. God is carrying me through everyday. I just turn my life over to him. I also try to keep negative words, thoughts away from me. When I had my two TIA's the only thing I kept hearing the nurse and drs saying to me and my hubby is: no stress, think happy thoughts, stress can bring on another TIA. After that, I was scared to death. But, I had to just give it to God and try to stop that stinking thinking. It has been over a year and a half since my last TIA and I don't seem to be in the stress zone as much. I try to take each second a day at a time. When I worry and stress out, that is precious time I take from my day. SO, I hope you can kick that stress to the curb. I am keeping you in my prayers. Keep HOPE alive and before you know it, it will slip away. Are there neighbors in your apt complex that you could have visit you during the day? Talk to you Physician, maybe they can help you. God Bless, Hugs, Jan Believe In Miracles AND SOAR :hug:

What is A StrokeNet Chat? A StrokeNet Chat is a place where friends gather A safe haven where feelings can be shared Stroke Survivor situations can be discussed Opening up like never before knowing things will be kept there A place where you can belong A place where laughter can start to enter and heal your life where sadness and doubt had appeared. Stroke can take the good times away and replace it with Dr's appts, hard work stress and so much more Entering a StrokeNet Chat can be just what the Dr ordered Why not give it a try? The door is always open There is no fee and you will leave with such a good feeling inside So why not stop by and say Hi? Come on now, Give us a try. Written with Love, Jan Johnson 2/7/09 Believe In Miracles And SOAR

Allan: You are a PLUS in my recovery, If I hadn't stroked, I would never have known you and everyone else here at StrokeNet. I feel you are such a BONUS, you are a STAR in my dark nights, you speak from the Heart, you share so much with all of us. You are a True Blessing in my journey. Thank you Mate. God Bless, Hugs, Jan Believe In Miracles And SOAR :beer: :Clap-Hands:

Please don't judge me You have no idea Please don't stare and give me those looks You have no idea You speak to others and say look at her and point your finger with your eyes and tone You just have no idea Look inside my soul If you only knew what I've been through Maybe then you would understand But, You have no idea I pray for you that maybe you would have a clue If others aren't just like you Take time and understand One day it could happen to you One day you might say or think "You have no idea" Written by Jan Johnson 2/8/09

I feel the only True disability in life is a bad attitude. With that being said, I feel my personality has changed since my Brain Stem Stroke, 11/03 and my two TIA's back to back, 06/07. I have always been a person who loved to help others, I had done volunteer work since 1971. Not being able to drive and losing my independance has been the worst loss .... I hate being stuck in my house. I miss not getting out and seeing others. I am such a people person. I try to stay positive and look at the bigger picture. I get sad and I cry a lot more now. I am more sensitive. It has been a tough journey .... I know it has been a big change. I just keep my faith in God and know he saved me for a purpose. I accept challenges and I refuse to give in to the Beast, Stroke. I will keep going into this fight/battle and I will continue to Believe In Miracles And SOAR The thing I like about our group is that we share the truth of our stories with one another, we know we can come here and be honest. We have all been there, done that and we are all just trying to survive. Good topic. I've had a rough couple of days and maybe I would answer this in a different "tune" if everything was hunky dorie. Gosh, I've never typed that word before. hehe It's a "Jan" stroke special. Oh well,. what the heck. Enjoy, Life is too special not to make it a priority. Hugs, Jan

Pass the Frozen Peas...and Outsmart Your Aches and Pains What do you do when little aches and pains act up? You might take a mild pain reliever, soak in a nice warm bath, or elevate your sore feet? You can try quick fixes, like placing a bag of frozen peas on an achy knee. These are helpful remedies when a little relief is all you need. What happens, though, when you need more? For some people, pain is an everyday occurrence, yet many try to live full lives despite it. They've learned how to gain the upper hand over pain. Such a person is Penney Cowan. She has successfully managed pain for 28 years, and she helps others manage it too. To begin with, she doesn't view herself as a sufferer. I call myself a person with pain, She says. "For six years, She did not deal with the pain. She was at the point that holding a cup of coffee was hard. Now, She is completely functional. She learned how to manage it." For Penney, relief came from a pain management program. "I went in as a patient and came out seven weeks later as a person." She says. Penney eventually founded the American Chronic Pain Association (ACPA). This organization, like others of its kind, helps people reclaim their lives when pain starts to get the best of them. All seem to agree that there are many creative ways we can help ourselves when pain keeps us from doing the things we love. Know When To Get Help You may think it's normal to feel achy as you grow older, but it's really not. "Pain is our body's way of saying, "Pay attention, something's wrong." "If you have to ask yourself the question, "Should I call my doctor." You probably should...especially if the pain lasts longer than a couple of days or if it interferes with your normal functioning." If you do see a healthcare provider, Penney advises that you prepare by keeping a log before your visit. "Your doctor can only go by your description." she says. "Write down the important things: the level of pain, your stress, the amount of exercise and other activities you do, how often you sleep, and any changes in appetite or mood." Penney adds that if your doctor dismisses your pain, you should see another one. Focus on the Positive Experts agree that the more you dwell on your pain, the worse it seems to feel. That's because your mind often controls how your body feels, and it can be hard to tell which one is pulling the strings. For instance, whether we're feeling pain or stress and anxiety, our muscles will tighten in the same way. With this in mind, there are steps you can take to outsmart the pain. It might not go away, but you can focus your attention on something much more pleasant. Here are some simple tactics the experts advise: Think Positive Thoughts: When you think positively, you act positively, too. Your mental attitude has much to do with your physical well-being, so focus on your abilities instead of your disabilities. Or, give yourself a treat to anticipate. Learn To Relax: To show the importance of relaxation, Penney explains, "I ask people if they can count from one to 25 in their minds and say the alphabet at exactly the same time, It can't be done, because we all have a one-track mind. So, if, instead of focusing on your pain, you think about lying on a bright sunny beach, imagining how warm it feels, You can reduce your sense of suffering. That's a skill you can learn, She says. Pace yourself: "Listen to your body." Penney says. "Does it tell you you're uncomfortable? Then stop for five minutes rather than trying to work through the pain. One of the basic rights we discuss in our group is the right to do less than humanly possible." In other words stop before you increase your pain. If It Hurts, don't do it. Do you remember the joke about the patient who told his doctor. "It hurts when I do this..." And the doctor replies, "Then don't do that." This is really very sound advice. Avoid activities that will cause pain, Instead, ask for help. Sleep On It. Sleep has restortative powers, so try to get a good night's sleep. If possible, or talk to your healthcare provider about ways to improve your sleep. Remember, pain can disrupt sleep, but sleep can disrupt pain, too. Treat yourself to a massage. A massage can relax your muscles and increase the flow of blood to the area. Be sure to stop if it becomes painful. Exercise Regularly: Light exercise ... as recommended by your healthcare provier.. can loosen your joints, increase your general state of well-being, and lift your spirits. Once again, remember to stop if the exercise becomes painful. our healthcare provider can help you set the right limits. The bottom line, Penney says, is to use the resources available to help yourself. In addition to the care your healthcare provider prescribes. "Take an active role in yhour recovery process, she says. "When you have a problem with your pain, you can't be a passive patient, Be an active participant." *For more information, visit the American Pain Association website at www.theacpa.org I rec'd the above information yesterday and found it so helpful, therefore, I thought I would share it here in my Blog for others. Hope it was helpful for you as well. I am using this Blog as a forum to leave my thoughts, items I find interesting and helpful, When I receive an e-mail that I feel is special, I will post it here, This is my safe haven where I can do just that, BLOG, Blog my inner most thoughts, feelings, anything I want to share. There is a time and place for such items... the Message Board is not the appropriate avenue to share my feelings about God. Here, however, this is my safe domain, I feel I can do that. I invite others to read my Blog, however, if they choose not to do so, that's fine with me. I do have freedom of speech.... I will be respectful of others. I keep my feelings on such thoughts in the proper arena. I never discuss politics. That is a pretty touchy subject. I will not go there. So, I hope you enjoy and learn something from this Blog. I have been to Pain Management but for me, it didn't help. I find massage a good source of help. I like this statement: For some people, pain is an everyday occurrence, yet many try to live full lives despite it. They've learned how to gain the upper hand over pain. The important thing is: Don't view myself as a sufferer. Call myself a person with pain, not deal with the pain. It's sorta like: The difference of being a Stroke Victim versus A Stroke Survivor, I choose the Stroke Survivor. Don't own the negative words, Be a Warrior of the Positive Words. I try to always remember The Stroke doesn't own me, I had the Stroke, it didn't have me. Words can be wonderful and they can also do much damage. Choose our words wisely. Thanks for stopping by. Pay It Forward. Take care and enjoy your day. Hugs, Jan Believe In Miracles And SOAR

I have had a lot going on in my life lately, I have been in extreme pain, I live in pain daily since my Brain Stem Stroke and I just go on daily. Lately, however, the pain is so severe and I pray I can get relief from it soon. The biggest problem outside of health issues, is my computer, It has a bad case of strep throat. Brother Bill called this am and is on his way to pick it up and try to resolve the situation. He realizes that my computer and telephone are my only lines to the outside world. He knows how much I miss my StrokeNet group and posting and reading the Message Boards, I miss my Chat, etc. So, answer to prayer, he is coming over to check it all out. The snow stayed away today and he is driving as I speak. I saw this today and it sums everything up and I wanted to share it with you. A young man was at the end of his rope, seeing no way out, he dropped to his knees in prayer "Lord, I can't go on," he said. "I have too heavy a cross to bear." The Lord replied, "My son, if you can't bear its weight, just place your cross inside this room. Then, open that other door and pick out any cross you wish." The man was filled with relief and said, "Thank you Lord," and he did as he was told. Upon entering the other room, he saw many crosses; some so large the tops were not visible. Then, he spotted a tiny cross leaning against a far wall. "I'd like that one, Lord," he whispered. The Lord replied, "My son, that is the cross you just brought in." When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more fortunate than you imagined. YOUR CROSS Whatever your cross Whatever your pain There will always be sunshine After the rain Perhaps you may stumble Perhaps even fall But God's always there To help you through it all. I don't know what my life would be without having GOD in my life. He is my all. I, first hand, received a Miracle from him five years ago. I am living proof of his greatness. How about you? Please keep me in your prayers, and my Computer, also, Lindy, she goes next Thursday to the University of Maryland to visit with her transplant team for her consultation to see if she can be placed on the Liver Transplant List. It has been very hard realizing I could lose her. I have to be strong for her. I love her so much and I know God is carrying her in his loving arms. Please keep Nancy and her family and Kevin in your prayers along with Cathy and Holly as they are trying to cope and heal with the loss of their loved ones, Amy and Fate. Keep StrokeNet and Steve in your prayers along with Allen. Love n Hugs, Jan Believe In Miracles And SOAR

:friends:Hi Debby: So glad to meet you. You have joined a group who are happy to extend their hand to you and who are happy to share their experience, strength and hope with you. You are not alone, we have all been through stroke one way or another. I am a Brain Stem Stroke Survivor, 2003, I was in a coma and on life support. When out of the coma, was 100 % paralyzed. Here I am in 2009, able to scratch my nose when it is itchy. Simple things mean so much to me. I, like you, was a very vibrant person, always on the go, busy, busy, busy, could do many thing at once. I have had to reinvent my life. I am in a wheelchair and can take baby steps. I can no longer drive my car due to the blindness from the stroke, but I focus on what I still can do. I love this group and I know, in time, you will also. Just take things a second at a time. I know when it happened depression was really bad, I would cry at a drop of a hat. I was told that due to my quad bypass, having your heart on a machine can cause that. Would have been nice if we were told that prior to surgery. I think it was a heart/lung machine. Anyway, I like to stay in the here and now. It is a miracle I am even here and I want to make the most of my second chance in life. Again, I am so happy to meet you. God Bless and Believe In Miracles And SOAR Hugs, Jan