Topic : 05/30 Ask the Authors

I too was touched by the way Dr. Phil explained MS and this show will help many husbands, wifes and family members understand. I learned the unexplained health issues I was dealing with and had been for 20 years were MS two years ago, 2005. My marriage needed last fall and my ability to work has changed. I love life and want a life with my friends and family sharing the good and bad. You are right lots of information is availably for anyone who wants to understand MS. Explaining how MS effects your body and how you feel is not very easy. I'd would appriecate it if you would send me the post 'Understanding What Having MS Means".

Thanks,
Star

My family does not suffer from MS, however my entire family is affected by my son's diagnosis of epilepsy. We have learned to live with constant medication, doctor's visits and the stares from the general public when my son has a seizure in public; it sucks! I don't have time to feel sorry for myself or my son, I educate people about the illness. Living with this diagnosis has altered ALL our lives and our sense of normalcy is not anothers' normalcy; and that's ok.

First you and I have our name in common. Mine is Dana Michelle. I wanted to say that she and I got into a argument due to the fact it is Friday and I had told her last weekend that she would not go anywhere this weekend due to the fact that she had been everywhere for the past  four weekends. I stupidly gave in and I did tell her that she could go with the knowledge that she couldn't go anywhere next. She began to yell at me. GUESS WHAT!! I didn't yell back, but I was really loud with the dishes not throwing them I was just putting them in the D/W. I was so proud of me. If you dont mind be my online accountabilty partner.. I could really use someone.

Have a blessed weekend.

Hi everyone. I was diagnosed with MS October 2005. It has been a roller coaster for me and my family.  I have 4 kids ranging from 3 to 13. They and my husband have been supportive. My husband tho doesnt understand all the way. He thinks that a cure is around the corner and we just have to wait it out. I hope he's right. I wanted to share with you all that there is a listserve called MS Moms that you can join. It has helped me a lot to be able to talk to other moms with MS. They trade stories and give advice and tell how they personally cope. Sometimes you can pick up somethings that will help you with your own life.  I would like to see more shows about MS to get the word out.  The most frustrating thing is that people assume you are healthy because you dont look sick. I actually was confronted by a man at a grocery store because I used my handicap parking permit. I have been on a physical and emothional roller coaster not knowing what to expect from one day to the next. The only way I can justify it to myself is that maybe I was living my life too quickly and not appreciating everything I do have. This was Gods way to make sure I slow down and smell every rose. It is unfair and why me has been a question I have asked soo many times. Its also a question that will never be answered. I was with my best friends mom when she passed with MS a month before I was diagnosed. She was only 54. I think about her a lot. But then there are others I know that are much older and still mobile. Its a very individual disease. It's different person to person but also day to day, hour to hour. I dont live my disase I live with it. But if somebody asks, I am more than willing to educate them on what MS is to me. I am excited to read Lean On Me. I think I am coping well, but could always use more inspiration. Take Care Everyone.

6/2/07

Dr. Phil and Staff

Thank you for have the show about Nicole, Sal, and MS.

My life ended 10 years ago when I was told I have fibromyalgia.  It is said to be in the MS and lupus family.  I guess I am in denial, because I never followed through with any follow-up.

 

I used to love life, loved to go to amusement parks, ball games, concerts, just loved to go do anything at the spur of the moment.

 

Now, I can barely move.  I have gain 100+ pounds and I hate life as it has become. 

 

NO ONE understands the pain.  Yes, I too, like Nicole “look” good and “look” healthy (besides the weight).   No one understands the PAIN.  I can’t walk, I can’t stand, and I can’t sit.  This in NOT life!  I am so depressed with this “invisible illness”.  It is all I can do to get out of bed and make it to work on time.  It’s NOT fair that my husband and family have to put up with me.  They deserve so much more.  I take any o-t-c pain med I can get my hands on, up to 10 pills a day.

 

The husband has been having an affair for the last 7 years.  I honestly don’t blame him.  I am nothing!  I can not full fill my “duties” as a wife.  No sex, my house is a pig sty, I can’t stand long enough to cook or wash dishes.  It is so unfair to him.  I do know what Sal is going through.  I am sure there will come a day that I will be in a wheelchair and I hate the thought of it.

 

Every day the chronic pain is unbearable, fatigue, can’t sleep, I feel like a zombie, morning stiffness, cognitive or memory impairment, irritable bowel (some days I have to stop on the way to work, can’t go far from home, cause you never know when you have to go to the bathroom), chronic headaches, numbness and tingling sensation (my body is on pins and needles all the time), muscle twitching, skin sensitivities, dry eyes and mouth, dizziness (I never know if I am having a heart attack or if I will pass-out), allergic symptoms, heel or arch pain (my feet, ankles and knees, are destroyed by the weight gain),  brain fatigue (I think of what I want to say, but the words come out all jumbled up), painful periods, chest pains, depression, panic attacks, irritable bladder, multiple chemical sensitivities (if some is in the room with perfume/cologne, room fresheners, I want to vomit), joint hyper mobility, suicidal, personality changes, disequilibrium, severe muscle weakness, intolerance of bright lights, alteration of taste, smell, hearing, painful sound threshold, changes in visual acuity, enhancement of medication side effects, severe nasal and other allergies possible sinus infections, weight gain, muscle and joint aches, heart palpitations, muscle spasms, heartburn, difficulty swallowing, unable to have children, the pain is endless. 

 

This illness is UNFAIR!   Short of moving to a state were marijuana is legal…  I am beside myself.  No one understands this pain because “I don’t look sick”.  There is a clinic near Cleveland, but since Fibromyalgia is not considered a “real illness”, “it is all in your head”, because there is no “test” to diagnose it, treatment is not covered by insurance.  There was a time when I would not have wished this pain and suffering on any one, however, I wish everyone, my husband, my family, my boss, could suffer through just 48 to 72 hours of this to see what I have to live with.

 

My husband did not sign up for this when we got married.  Some days I wish I could afford to live on my own.  I would divorce him so he could move on with his life.  He doesn’t deserve this! Can’t anyone find a cure for MS or FMS??  Or anything to ease the pain??  I am so tired, this is NOT living. 

 

However, I force myself to get up every day!  I do my hair, I put on make-up, I put on a fake smile, and I pray that God will get me through another day.  I force myself to do housework and to do little yard work.  However, then the pain will intensify for 3 or 4 days after.  I pray for strength to walk, to get me up and down the steps.  That is all the exercise I can tolerate. So, I am fat, and continue to gain weight.  I am trying to be productive in society.  There are many times I want to say “the hell with it”; apply for disability and curl up in a ball and check out of life.  But, I do not want other tax payers to have to cover me.  So I continue this uphill battle. 

 

I will pray for Nicole, I will pray for Sal to have the patience to be understanding.  We did not ask for these illnesses and we are trying our best to get through each and every day.  We certainly never wanted our families to have to go through this either.

 

Again, Thank you for having this show!  I hope, that those, will be a little more understanding that just because we don’t look sick, you never know until you walk a mile in our shoes.  I have viewed people differently in the past years.  You just never can judge a book by it’s cover.  You don’t know the pain and suffering some one endures just by looking at the outside cover.

One thing MS does, is to strip you of your illusion that you control your life.  You control some things but life happens.

 

You wake up in the morning and check to see if your legs and arms will work today.  Actually, I wake up and see if I can stay awake, then I check on functioning.  The crash & burn MS fatigue can happen anytime even after 8 hrs of sleep.

 

I was diagnosed with MS in 1995.

 

Car accidents happen.  You could be on the way home from your neuro app't and get whamed by a drunk driver and end up in a wheelchair.  Everyone thinks it won't happen to me but it can.  Thank heavens that it has not happened to me (yet). 

 

I have 13 steps to the laundry room also.  My deal is I get it downstairs and do it but he carries it back up the stairs.  You don't have to carry it down the stairs, you can throw it or kick it.  Good way to get some frustrations out.

i  have not  read the book yet, and i didn't have too. because the second the titlle was mentioned, i knew exactly what it was like to ask  "for one more day". you see, i was only 14 when my father died.  THE MOST DEVASTSTING LOST OF MY LIFE. and I' ve burried a child.  papa  at times, comes to me in dreams.  and the last time was the first time in 30 years that i didn't wake up sobbing with my arms reaching out, trying to hold on to him, and begging for one more MINUTE.

         my story is a very complicated one. and to fully understand the depth of my lost , i have to hint you a bit of my childhood.  growing up i felt papa was the only one in the world who loved me, while i felt nothing but hate and resentment from my mother .  later i came to understand why it was so. my mother had 13 children, all but three died before the age of one. i am the first of the surviving three. but am also the only one to survive of the three with  my father. my mother told me that she never loved my father. she only agree to go with him, because she was orphaned, and the elders from her family pushed her towards him, because he was hardworking, and therefor would be a good provider. after loosing their first two sons , she left him while still pregnant with me. to this day i beleive that my mother resented me for surviving, unlike the firs two children by my father. as a result i sufferred some of the most horrific physical, emotional, and verbal abuse @ my mother's hands and lips. today @ 44, my physical scars remain; the most disturbing is the one on my right breast.( a bite, when i was 12 and just budding), oh, and she did actually wish me dead, in one of her rage( i wish you' d run in front of a car, she said.). when my father would go to her to plead with her in my behalf, she'd be so mean, that i felt  i had to protect him, so i could not tell him about the sexual abuse i was suffering; some from her relative, some not.  first it would hurt him too much, 2nd he would go to my mother and i would get blame.  my mother died during childbirth, at the same age that i am today.  i became a midwife, and volunteer 3-4 times a year  serving the poor women giving birth @ the same maternity ward where i was born, in Haiti.  this work i do, IN HER HONOR.  whenever  i stand topless in front of a mirror, or when i  think of my mother, i repeat this phrase to myself" she didn't know any better". in some small ways it has help me some sort of peace and forgiveness. 

    while i had to try really hard to forgive my mother;   it is still my papa that i, 30 years later continuously begging "FOR ONE MORE MINUTE."

A year and a half ago I was confined to bed from fibromyalgia and depression.  I was suicidal.  I had no family nearby to rely on.  I couldn't find any community resources to help me.  I was using my walker as a wheel chair.  My doctor gave up on me.  People treated me like I was just being lazy.  It took a lot of determination, but I decided to take charge and tackle each stressor one at a time. 

   You deserve to be on disability more than most people.  Find a disability lawyer that will receive payment only if you win.  There is a limit on how much they can charge and SS will pay them directly when you win.  First, see a psychiatrist and document your condition.  Fibromyalgia is becoming more recognized, and depression is certainly a recognized disability especially when combined with the symptoms you report.

It my take you more than two years to get through the process.  Ask your congressman for assistance; that will put your file on a higher proirity.  SS now allows you to work part time without loosing your benefit if you still feed the need to be productive.

 

    I went to a pain specialist.  He prescribed physical therapy and strengthening my muscles allowied them to better tolerate the pain.  I went to a psychiatrist and started on antidepressants.  I got a sleep study and discovered I had sleep apnea and was sleep deprived.  I also moved into a retirement home to get the care I needed.  I was able to move in with my Dad for a small extra charge.

 

   It was a long slow process, and I still spend a lot of time in bed, still have some depression, and I know I will never be completely healthy again, but the pain is under control, and I'm able to care for my Dad, go for a walk, do some volunteer work, and I am applying for part time work.

 

   I wanted to give up and let someone else take care of me, but something inside me just wouldn't allow that.  Driving yourself to keep going is causing a lot of damage to your nerves, causing the weight gain, and making things worse and worse.  If you don't take charge and take care of yourself, no one else will, and you will end up unable to function at all.  Toughing it out doesn't work.  You need to get more rest, and don't neglect to exercise.

 

   I am praying with you and I expect to see a message from you saying that you will take care of yourself.

I feel sorry for Nicole that she has been through since her diagnosis.  A husband should be supporting his disabled wife.  She needs a HELP from Sal seriously.  That's very important.  Well, I have a different, personal situation.

 

I was diagnosed with Congenital Rubella Syndrome.  It means my mother got a sick while she was 6 weeks pregnant with me.  That's how she got German Measles as an opposite.  I am now deaf and crippled but overcome.

 

However, my deaf husband with one hearing aid, who now lives in San Diego, California but I am living in Florida, didn't have time to take care of me as his being disabled wife because he's working overtime at a hotel there.  Hubby left me alone almost 7 yrs ago because he has problems with my family and helps his parents to pay their rent in a half.  I don't like the way he does paying for them.  He works too much.  That makes him very stressful.  He likes going to work more than spending time with me.  I really need his help badly.  I still haven't heard from him in a year.  Sounds like a bad.  I think he's lost and in a big trouble.  I already figured he's not thinking straight.  I want him to replace my father who about getting old.  I also want him moving back to Florida.  That's why I need a help from husband and he should be taking responsibilities.  He should realize them.