Topic : 05/30 Ask the Authors

As a child, I would visit my grandparents for the summer. At times, I didn't understand why she was so tired so much or why she didn't want to leave the house much. I thought it was just her "southern thang" to nap in the afternoon . And old people go to bed early & get achy, right?

 

I knew she had this thing called "Lupus" from a young age. But not until I was in my early tweens did I understand what that meant. A church member explained it to me. Boy was I upset that she didn't tell me this before. Her fatigue, her need to stay out of the sun, her aches & pains. I am now 33 & still do not know all that I could about the disorder but I get the gist of it & understand.

 

Like someone else said, educate yourself & others. Don't keep the truth from them. Children especially need to know. They can't understand what they don't know.

 

My husband was diagnosed with a brain stem lesion that had bled in his brain in Jan07.  He was a ver y healthy active hardworking man.  Now he can't balance well & he sees in double now.  We have 2 small children and the changes that have taken place in this year have been tremendous.  I am holding my family together- working, cleaning the house, and taking care of everything.  I love my husband more that anything and I am so blessed that he is still with us ! However, as the caretaker I feel like the weight of the world is on my shoulders.  I understand the feelings of "its not fair" and wanting to pretend like its all okay.  I have not found any "outside support" for us- other that our church family and it does take a toll on everyone.  I don't know how to help him cope with his loss or cope with mine & the kids.  I wish I could see the show today.  Maybe it could help.  Grace & Peace to you all.

Today's show made me mad.
I have been diagnosed with mulitple sclerosis for at least 5  years now. I was 23 when I first found out.
MS is not a big deal. - Its not necessarily progressive. The husband was being completely fatalistic about the diease and really  - thats not fair.
Out of all neurological dieases, MS Is pretty much the easist to deal with.
I have to deal with no feeling in my left hand.

Dont get me wrong - its not always easy. I lost total control over my right side of my body. MS isnt fun but there is hope.

I dont tell people about my illness unless they ask.

 

My husband was diagnosed with MS officially last August. but looking back we can see where he has had episodes for years before that.  I to am struggling with my vows. the in sickness and health thing sucks.  I know that his body has the MS and it is not the real him. I tell myself daily that things are OK, and that we will make it.  I am Drowning in this whole situation.  I wish he wasn't affected cognitively. that is definitely the worst. You can have a conversation and then 10 minutes later it is gone.  he was such a strong person, my protector and safe harbor.  slowly he is slipping away, It hurts to see him struggle to do the smallest task. like putting on his socks. or walk from the living room to the bath, or bed.  I told a friend the other day that i have come to HATE MS.  I am not one to say that lightly either. 

overall the show was good.

 

I call my spouse and every other spouse affected by MS a "care partner" not a "care giver" because my MS affects my wife as well.  Our mutual admiration and support is what makes me successful in my disease therapy.

 

I am an advocate for my disease and therapy choice which means , no, I don't stand on the corner pronouncing the benefits of MS but means that I talk to peers about being positive and taking control of their disease as I have.  I cannot tell you the horror stories I hear from patients who are crushed because a spouse or significabt other has left because of their disease and the unknown future it entails.

 

I can tell you that in my case, my wife saw my 1st episode of MS while we were dating.  After 14 years of marriage now, I am happy to say that she is still by my side and my biggest supporter.  I only wish I can show her how much I appreciate what she does for me.

 

Dennis

It is good to hear you are so able to cope with your condition and maintain a very positive attitude.  I only ask that you not let that detract from your understanding of others who do not or cannot manage it as well.  I am no authority on MS and claim no distinction there.  I am sure you could teach me a great deal about it that I do not know.

 

What I do know is that most conditions will vary from one person to another.  For example, my sister has Lupus.  So did my mother.  It is far more debilitating for my sister than it was for my mother.

 

You sound like a person of great inner strength.  Unfortunately, that is a gift not given to everyone.  I hope you will use your strength to encourage those who are not as able to cope. 

 

Best wishes.

I know how it feels to have a disability I have a heart condition but it doesn't stop me from doing anything thats because I don't let it get in the way of my life I have to much to live for in my life I have two sons and after I had one i had a blood clot on my lung and i still have a chance but i don't let it stop me

 I was diagnosed with an autoimmune disease in 1997. My immune system was attacking my nerve endings so the beginning of my treatment was to supress my immune system. As a result

I couldn't go out in public. I became a prisoner in my own home for 3 years. Even when I could go out, I hardly ever did and I lost all my friends. It was very depressing. I finally decided to do something about it so I found a support group. It wasn't for my specific illness, it was for chronic pain and depression but it fit, so I went. It was really scary for me but I did it, I was so proud of myself. It was one of the best decisions I've ever made, I wish I hadn't waited so long. I feel so much better physically because my mental health has improved so much. I got the support I needed and I never miss a meeting now.

 

Granny127

So hello everyone, I am new to this message board, so please forgive me..

 

The reason for my post today is that today marks the TWO week anniversary of my father's death. His death was unexpected and quick. From the time he left his house, to the time of his death was 9 hours. He was in California and I live in Virginia to say the least I felt completely helpless and guilty. I talked to him the day before and keep replaying the conversation in my head looking for anything to hold on to. I dont know how to deal with this. Im guilty, sad, depressed and hopeless. My dad is my best friend and the thought of never talking to him again is horrible. It seems to me like everyone else has "moved" on, and I just feel like I can never get over this.

 

I think I needed to voice this as I feel like no one else will understand.

Thanks for listening and peace to all.

My husband has severe degenerative bone disease and we are experiencing problems in our marriage. I could totally relate to the couple at the beginning of the show. It has effected our whole family and I find myself feeling depressed and alone. I try to be supportive but there are alot of days when he just doesnt want to try and the more those days add up the harder it is for me. I think alot of our problem is where do we go from here when the doctors dont have answers and the one who is sick feels like giving up. We are in our 30s and have two children to raise. I cant do it all and quite frankly am tired of trying.