Monthly Online Magazine
By and For those with MS,
June 2008, Issue 105
Tables of Contents
This is Page 4
Click name of person you'd like to see
MJ, Writer (Deceased Sept. 18, 2005), Sadly missed
As you can see in the picture, I'm a weight lifter.....no not really, just having some fun with the camera, thanks to my best-est friend ever, Betty, indulging with me in taking the picture. :+) Enough said of that, now it's about ME and who I think I am. Where do I start? I'll try at a beginning: I live in Chicago. I'm NOT married and have no children, though I can always, [not willingly] attract gay men. But that's another story for later if you want. Where was I? I'm single and for my 30th birthday, I say I got a bio hazard materials container for a birthday present. I look back on it now, as it was a present from the clinic that had sent me on my way to a neurologist to start the massive amounts of tests needed to eliminate everything to pin point to multiple sclerosis. [I was personally hoping for Lyme disease.] But again, I digress. Since I've been taking Avonex for 6 years [and 3 months now] I'm presently 36 years old and almost wouldn't change, too much. See when I was working, I didn't have time to do anything other than work. I had many business suits, business cards, connections to 'the right people', went to office meetings in and out of state, and created many business handling reports, and money reports sometimes trafficked a million dollars a month funneling through my hands, that took most of my time. It's now because of MS, I find myself returning to the things that really bring me joy. Sure I don't like injecting myself in a muscle weekly...who would? But I also had time to develop AND finish a story that's been haunting me for years. It's a 598 page manuscript that I finally wrote that's been picked up by a publisher! Whee!!! AND I have 5 different works of mine in 5 different hard cover books, too! I do not go out THAT much, since whenever I'm in a moving vehicle that I'm NOT driving, I get VERY car sick: As I did in JJ's Jaguar when I was out of town visiting him. And no one likes that I'm sure! Another reason that I don't go out as much as I used to, is I don't have the energy to do it. Also the temperature needs to be cool or I wilt and that's not a nice thing, either. It's now, that IF I were to run a marathon, I'd need two canes to get me to the end of two blocks, but I wouldn't have done that before, so I wouldn't miss doing that now. Tricky huh? So my job is keeping the literary world working by [almost constantly] submitting things to be published! So when you see my name, know that you can honestly say, 'I knew her when'. Maybe I'm in denial. But I'm trying to make that a better place for me! That's me, MJ Fles!
Married to a wonderful man. We have 3 children, ages 17, 13 and 8.
I was diagnosed with MS in 1999. I've been on Avonex for 2 yrs now and its made a great difference in my life. I now go to the gym 4 days per week and have a lot more strength than I did just last year. Sometimes it takes its toll and I back off a bit, but for the most part, I'm doing great.
I love life, people etc. I love to experience new things, I enjoy traveling to new places, meeting new friends, etc. I've gotten a lot of strength from this magazine and its stories and writers. I hope everyone continues to write these wonderful stories
Hi my name is Nicola Stevens.....friends call me Nicci, my mother calls me Pain (LOL) I am 25 years old and a born and bred New Zealander. I live and work in Auckland and have been DX for a couple of years now although have had MS since my teens. My partner Jason has been with me through thick and thin and seen me at my best and worst. I am lucky to have him and my parents that are a great support network. MS has made me stronger, although it has reduced my ability to do some things the strength it has made me learn in return is huge. I still lead a very active life, I socialise, exercise and in general have a lot of fun. I have just got very good at monitoring my body and listening to it's messages. I am very into alternative treatment and use a lot of herbals and homopathic treatment. I have not on any medication for my MS and have no intention on going on any. I am part of my local MS group and meet with them once every month or so. I think that this news letter is great. Take care all.
My name is Anna Floyd and I'm from Goose Creek, SC. No lie! There really is a town named this! I'm 27 years old and was diagnosed at the age of 21. I have relapsing remitting MS and I seem to be taking it really well, but maybe that's because of my age. I have a very supportive boyfriend who won't let me lay down and die. He's a godsend. He has me walking and climbing the stairs as often as I can. That's good, though. Because of my constant work-outs, I'm in pretty good shape. I still live with my parents--God bless them for putting up with me. I have years to go. After all, remember that we MSers live to 90-95% of the normal life span.
My name is Darin and I am 37 married to a wonderful wife (Alice) and 5 kids. We have been married 17 years.
I was dx in April of 91. I was on a submarine then. It was my career and I was doing well. I loved my job, but didn't care for the separation from my family.
The VA covers all my medical and financial needs. I was honorably discharged and am permantly retired from the Navy. We live in Kansas now. I sure do miss fresh seafood!
I can still get around, but fatigue sets in fast. I use a wheelchair whenever we go out.
Reach Darin by email: Darin121764@hotmail.com
~ With Sadness, I report that Joanie (YokieGirl) passed away on June 2, 2002. We will miss her optimism and love of life we saw in her poetry.~
Luis emailed me stating that he liked my poetry and invited me to visit MsMusings... I love your site! I had never seen it before and have just spent a couple hours checking out different parts of it! I will be coming back more and more! :)
I was Dx'd on May 13, 1988, I had NO symptoms whatsoever! I just thought I needed new glasses! My normal eye doctor suspected MS right away (although he didn't tell me that)! He couldn't get my left eye to focus properly. He sent me on to an ophthalmologist, who was very blunt in his opinions!
He told me I had one of three things: 1. I had a tumor of the optic nerve; 2. I had optic neuritis; or 3. His guess was that I had MS. I didn't even KNOW what MS was! I told him flat out, You can't tell me bad news without my husband being here! (some good he would have done anyway ... but that's another story).
So, on to the neurologist for the famous MRI, lumbar puncture, and various other tests, only to confirm what the ophthalmologist already shocked me with. Bless my Mom's heart, she didn't like those doctors and made an appointment for me at the Mayo Clinic in Rochester, Minnesota. She drove me up there, and we got the same answer with the doctor only having to see my MRI films.
Well, I was formally diagnosed with R/R MS, and have since graduated to progressive. Although, I didn't bother to ask what I was progressing too! :)
In 1994, I finally found a neurologist that I liked and my MOM liked! LOL Dr. Doro, in Des Moines, Iowa started me on beta seron and I was on it for over 6 years. During those six years, my house burnt to the ground, my husband accused my MS of ruining our marriage, so I moved out and filed for divorce on my own! Teach him to blame my MS for something! The only good thing to come out of that marriage of almost 22 years was my 3 great kids!
In 1998, my soon to be ... new husband drove up to Iowa to meet me. Yes, we really did meet on the Internet! After talking online and on the phone for several months, I finally gave in and let him drive up to meet me, on the one year anniversary of my divorce. Dennis and I have now been married for almost 4 years, all of them the most wonderful of my life!
We live in the middle of thirty acres of timber, in the Northeast corner of Oklahoma. Dennis has two kids of his own, whom he has raised on his own since 1996, when his wife died of a stroke. Or his kids have raised him, I'm really NOT sure which is which sometimes! LOL
As for my MS, I had to quick working in March of 1995, and filed for disability right away. Unfortunately for me, it took over 3 years to get on it ... but alas... I am now on it! My fantastic lawyer here in Oklahoma even won my appeal from Iowa, and I have recently heard that I have received a "fully favorable" decision on those first 3 years too! I was approved here, on the first try in 1998... From 1998 on, I have been receiving disability checks, now I'm anxiously awaiting the big one from when Iowa was WRONG! (Do I sound a bit bitter?)
Anyway... I walk, sort of, on my own, with a lot of pain. But I don't let that stop me! I'm too stubborn to ask for help, or to give in to my pain for any reason. Sometimes the floor and I are best of friends, but it doesn't bother me, as long as nobody saw that! LOL
Yes, I make jokes a lot, sometimes not very funny ones, but nonetheless, I can laugh at myself and my MS, and make those around me feel a little easier about it.
I've written a lot of poetry since my discovery of MS. The one I am including today, has been used by the National MS Society in its lectures around the country. You can't imagine how honored I felt when they CALLED ME and ask MY permission to use my poem! :)
Anyway, that's my story, and it's my life and at 46 years of age, I can honestly say I am happier now than I have ever been! (Thanks to my WONDERFUL husband!)
Richard, 58, was diagnosed with Primary Progressive MS in the mid-1980s. He is in a Permobil WC full time now. He does many therapies to maintain his strength, muscle tone, and flexibility. He works part time as a telecommunications manager, and has a website at www.beejet.com.
Elizabeth, 49, is his carespouse and patient advocate as needed. She is a former medical secretary who quit working when Richard's MS progressed. They live in central Pennsylvania. Married for 18 years, they have 3 grown children.
Richard using the ceiling lift
Elizabeth and Richard: Elizabethpa@comcast.net
I am 42 yrs. old and currently living in the Baton Rouge area of Louisiana. I grew up in East TX. (Dallas-Greenville area). I have one daughter (Janee') who just graduated from A&M College Station and is teaching 8th grade math in Garland, TX. I was a single mom most of her life and have recently met a man (Billy) who plans to marry me shortly after my daughter's wedding in June. He has a 12 yr. old son (Drew). I was diagnosed with MS in 1992. I, like others, absolutely detest the neuros and have not had pleasant experiences in that dept. I just received my first round of steroid treatments. I am doing well but have had to resort to disability due to the attacks which rob me of the ability to maintain steady work. I am the Creator, Executive Director, and Owner/Partner of a non-profit organization. It is called Prevention Education and Training Service or (P.E.T.S.). It is a very unique program in which I created a k-12 drug, alcohol, and violence prevention curriculum for schools. We rescue labs and golden retrievers and therapy train them. Once they qualify, we train them to find Narcotics, Alcohol, and Gunpowder. Once trained they live with a representative and accompany them to school to search and teach classroom education. Sort of a non-aggressive approach to "Drug Dogs". The children love it and we are growing leaps and bounds. I do not earn an income but it allows me to work when I am feeling well. Please check out our site at www.petsprogram.com. I also have several poems published on Poetry.com under the author name Ronda L. Thompson or Ronda Lynn Thompson.
I am new to your site. I just found it and was enjoying the poetry you have posted. I thought I would try and add mine to the list since most others do not appreciate it as MSers would. I have attached a photo that I hope is okay to use. It is a glamour shot but what the heck...we all have the right to look our best on line! If you prefer, the photo on the web site is also suitable to use and highlights my everyday look. Please sign the guestbook so I will know you visited and let me know what you think of the site. It is mostly for our kids but has some good parent pages to. It took months to build as I had to teach myself how to code html and I was computer illiterate. It has truly given me something useful to do when I can't get around.
Andy and his two sons
Stephen Baron is married to a child neurologist, is the proud father of two daughters, holds a Ph.D., taught Political Science for 23 years until he retired in 2000 at age 50.
Picture of Stephen taken in Jerusalem.
Reach Stephen by email: firstname.lastname@example.org
Marsha Jordan is a disabled grandmother, author, and shower singer who began her writing career on the bathroom walls of St. Joseph's Catholic Elementary School. Now her writing appears in restrooms throughout the country. Jordan has two boys, ages 30 and 55. She's been married to the 55 year old for 31 years.
She's been held captive for a quarter of a century In the north woods of Wisconsin where she shares an empty nest with her rocket scientist husband and their badly behaved toy poodle, King Louie who rules the household with an iron paw. Jordan, who has eaten enough chocolate to make the Guinness Book of Records, spends her days ignoring her dirty oven and dreaming of the things she'd like to do but probably never will -- including overcoming the trauma of class picture day in second grade. Her hobbies (besides eating and napping) include rubber stamping, collecting antiques, riding her pet pig Shirley, and studying do-it-yourself dentistry.
After her grandson was badly burned, Jordan created The HUGS and HOPE Foundation, a nonprofit charity devoted to cheering critically ill and injured children.
Jordan's inspirational and humorous essays are available in her new book, "Hugs, Hope, and Peanut Butter." The book is illustrated with drawings by kids who are battling for life. Click here to learn more:
By combining hope with humor and drawing upon her own experience of living with chronic pain and depression, Jordan shares everyday experiences, lessons she's learned, and practical coping skills. Once active and energetic, her busy schedule came to a halt when she fell victim to a connective tissue disease, causing migraines, fatigue, fibromyalgia, and joint pain. Due to illness complications, Jordan was temporarily struck blind; so she knows how it feels to be sick, in pain and afraid.
In her book, Jordan (Phyllis Diller wannabe) recounts her search for the perfect purse, camping adventures, aging without grace, and dealing with her "very male" husband. Some chapter titles include, "Limburger Attitude, "The Joy of Shopping," "Is Broccoli Hazardous?" and "Life in the Manure Pile."
Jordan has received many awards for her work with children, and was featured in Rosie Magazine as well as on WGN television's Unsung Heroes program.
She's had devotionals and stories published in "A Cup of Comfort" and other anthologies. Her articles have appeared in "Heart Light" and "Obadiah" magazines. Jordan is a regular columnist for "Handmaidens" magazine and "My Walk With Jesus" Christian newspaper; and she has contributed to over 50 online newsletters and e-zines, such as "Heart Warmers," "Power to Share," and "Warm Fuzzy Stories."
Between writing, running a nonprofit charity from her home, and enjoying time with her grandson, Jordan devotes herself to three pursuits: white chocolate, dark, chocolate, and milk chocolate
4550 Horsehead Lake Road
Harshaw, WI 54529
Or phone 715-282-7271
(Loren passed away on Feb. 3, 2006 ~ We're going to miss you, Caddo)
I DON'T DENY MY MULTIPLE SCLEROSIS, I JUST CHOOSE TO IGNORE IT!
MY NAME IS LOREN MOORE AND IíM 70 YEARS OLD (AS OF 11-12-02). IíVE BEEN MARRIED TO MY WIFE, JOHNNIE, FOR 51 YEARS AS OF 11-14-02. I WORKED FOR THE GENERAL MOTORS ASSEMBLY PLANT IN ARLINGTON, TEXAS UNTIL I HAD TO TAKE EARLY RETIREMENT IN 1975 BECAUSE OF MULTIPLE SCLEROSIS. MY HOBBIES HAVE ALWAYS BEEN HUNTING AND FISHING. IíM AN UNEDUCATED REDNECK FROM THE PINEY WOODS OF EAST TEXAS.
NOW THAT I'M IN MY OLD AGE AND DO MOST OF MY HUNTING AND FISHING IN MY MEMORY I DECIDED TO WRITE ABOUT A FEW OF MY EXPERIENCES. I CAN REMEMBER EVERYTHING THAT EVER HAPPENED TO ME AND A FEW THAT DIDNíT. I DECIDED TO WRITE THEM IN THE FORM OF A SHORT STORY. THESE STORIES ARE ABOUT 90% TRUE AND 10% FICTION. MY WIFE JOHNNIE SAYS THEY ARE 10% TRUE AND 90% FICTION. MAYBE THEY ARE SOME WHERE IN BETWEEN. BUT BE THAT AS IT MAY HERE ARE MY STORIES.
THEY HAVE BEEN WRITTEN FOR THE AMUSEMENT OF MY TWO DAUGHTERS, SUSAN AND ANGELA, MY TWO GRANDDAUGHTERS, AMANDA AND GINGER, MY GREAT GRANDDAUGHTER CHIVONA LYNN (AKA DOODLEBUG) AND MY GREAT GRAND SON, DENNIS, AND ANYONE ELSE THAT WANTS TO READ THEM.
THOSE WERE THE DAYS MY FRIEND. WE THOUGHT THEY WOULD NEVER END. WE THOUGHT THEY WOULD LAST FOREVER AND A DAY. WE WOULD LIVE THE LIFE WE CHOOSE. WE WOULD FIGHT AND NEVER LOSE. FOR WE WERE YOUNG AND SURE TO HAVE OUR WAY.
SO COME TIME TRAVEL WITH ME. LET'S TAKE A CRUISE DOWN MEMORY LANE TO THE GOLDEN OLDEN DAYS.
LOREN MOORE email@example.com
Hi, my name is Marcus Stout (unfortunate initials). I was DX (if that is the right term) in 1999 but symptoms could be traced back 10 years. Boring facts - I live in Scotland which has the highest incidence of ms in the world (over 10,400 people with ms in Scotland and 85,000 in the UK). I am pictured with my wife who is an optometrist which became very convenient when I suffered a bout of retro bulbar neuritis (double vision to you and me). I used to be very active (martial arts, jogging, keep-fit etc.) which has taken a back seat now but I still keep up yoga - it does help me. I have RR MS and have just been involved in a study for Azithromycin which is an antibiotic and it 'may' have properties to help ms - I don't know the in's and out's because I'm not medically trained and the trial involves 20 people of whom 10 are given a placebo and even the neurologist won't know until early May this year when the results of MRI and blood samples are investigated (over 6 months). A! t the moment, I have a fair amount of mobility although distance is a problem (as is fatigue). It would be nice to hear from other people with ms. Thanks, Marcus
email : firstname.lastname@example.org
Hi Carolyn, this is Penny Howe. I have a story to tell.
I'm a certified nursing assistant and for years I've work with the elderly.
November of 2001 I received an E-Mail from an old friend. We had gone to high school together and had dated for about 4years. We hadn't seen each other in 35years. We both went our separate ways, each marrying and having kids. Both divorced and living in the same state about 2 hrs away. My friend has MS and is in a wheelchair, and of course I feel bad about it. After a few E-Mails we decide that we should get together. I traveled to his home and what a nice visit we had. I come over and take him to church every other Sunday. We go out to dinner, social events, picnics, and MS meetings. Since November we have rekindled our love for one another. He is the joy of my life. My heart smiles every time I see or think of him. I know he feels the same. I think God has truly blessed both of us.
Reach Penny by email to comment: email@example.com
~ and ~
I have a dog, Connie, who makes me L augh
I have an iguana & 5 bearded dragons that can get O rnery
I have 2 cats full of V itality
I have 2 guppies and a pond full of goldfish that are E ntertaining
I love to garden, read, hike, fish, keep a menagerie of pets, collect East European folk art and take long bubble baths until my fingers and toes turn into prunes. Oh, yes, I also have MS.
PostScript Ė I was finishing writing my biography when Jacqui-Noel took the tablet and continued on as if writing for me:
"This was shocking for everyone but now they all help me when I need it. My husband and daughter help give me shots and my son picks up things I need from the store. I was diagnosed Ö and at the beginning it was hard, but now itís a routine in my everyday life. I am happy I have a family that cares so much about me and helps me or else I would have a hard time getting my shot or running to the store."