Tell Us What U've GAINED Since Having MS???

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rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/5/2008 12:19 AM (GMT -6)   
Hey Everyone
 
I was so inspired by the tread relating the story of the woman who had ms and had been an inspiration to others. I enjoyed seeing all the positive attitudes in the posts that followed and so i wondered just how many here had more to offer. All too often we focus on the negitives of a situation...and it's true..ms is a negitive. But, what if we looked back and tried to see if there has been anything new and good in our lives since ms came along?? I wonder how much we could find and how much better we'd rate our lives due to those changes?? No, i'm not at all suggesting ms is a good thing or a positive impact on anyone's life...but to me it seems there is usually some good that comes from things that are bad...if we look.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/5/2008 5:34 AM (GMT -6)   

What I've gained?

A clarity of vision.  There is only today.  I can't plan for tomorrow...or the future. I can only spend time this minute, doing these things. So I try to do them as best I can, as thoughtfully as I can; try to do some good, even if it is just one small thing. I don't mourn yesterday -- it's over, done with, can't go back.  I don't worry about tomorrow. Just today.  Then I go to bed, get up, and do it again.

I only worry about those things over which I have some control...and try to make that control worth something.  There are TONS of things over which I have NO control...and worrying about those things only shortens the time I have to do other things.  I "don't sweat the small stuff.  And it's all small stuff."

I learned a long time ago that I have no control over anyone else's feelings, emotions, actions, behavior -- only my own.  So I do what I can with mine, and let them do as they wish with theirs.

I briefly mourn losses (I wouldn't be human if I didn't!) but then move on.  If I spent time cataloging and grieving every loss, I'd not have time or energy to see the good stuff.  MS has taken away a lot...but I'm still alive, I still have abilities, I still have obligations...so I deal with those things, and not the losses.

 

And I've gained weight.  I love food too much to diet, and with limited ability to exercise, the pounds came on.  My weight is now stable -- has been for years -- but I'm carrying much more than I should, and more than I'd like, but I'm not doing anything about it.  :-)


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/5/2008 6:44 AM (GMT -6)   
I've gained a host of new friends. There of course were the ones who vanished when I became ill. Miraculously there were a different type of people that then entered. Less shallow, full of compassion and affirmative as well. I'm so very thankful for them. On a bad day, i can get a call from one I'm thinking of now , and it just totally picks my spirits up. I give back to the frienship as well. I've learned to nurture relationships much more like they are priceless. They always were, but I didn't always act as if they were.

My children-ive learned that even when they ask about MS that they don't want to know. I dont blame them. It's hard for them to hear any bad. I try to tell them the good things also but they simply think im invincible. After they ask, and before they allow me to answer, they say "you'll beat it mom, you've always beaten everything". (if they only knew haha).

It's made me seek God with more drive. I intensely want to know his thoughts on MS. How he views what we go through. I also seek a healing. Not from a man who claims to have that ability, but from the "great physician", i never need an appointment; money; list of symptoms; bag of medicine, or have a fear that he will minimize me.

I've learned that life is good. The old saying "you don't know what you've got, until it's gone is so true", so I try to embrace what I do have. I've found myself in catholic churches giving ulogies (sp) and I'm not catholic. I venture out of my own comfort zones as I wish to experience as much as I can. To learn of others and their beliefs and ways.

Christmas! Until this year, christmas wasn't a good thing for me. My childhood ones were atrocious, then my father passed away 2 days before christmas. This year however, at the first sound of a carol being sang, I became full of joy. Joy of life. I looked at everything as if seeing it for the first time. It wasn't a hassle to decorate and I'm not yet finished putting it up yet. With the snow on the ground and the fire going, it just feels so very good.

I'm beginning to take online classes soon. I have all the info to begin and probably wont make it in until June, but I'm excited about that. I might have to make more lists for memory's sake but this has made me stop procrastinating alot of things.

Traveling. I see the world now. I simply save and go, come back and save and go. I make sure they are places I've always wanted to see and things that my children can learn from. Pearl Harbor for example. Next stop-Colorado.


Rhonda? I think you have a great thread here, and I appreciate the chance to participate.

I'm also glad I found this board of supporters!
 
I've gained a love for life


thanks

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/5/2008 5:48:32 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/5/2008 9:55 AM (GMT -6)   

Wow this is a great idea.  I am so glad to not only think about my own gains but to learn from what others have gained.

I too have learned to take it one day at a time.  I just do and live to my very best each day.  I am so happy to still be able to do the things I can. 

I have given up sweating the small stuff.  I don't worry about the occasional poor grade earned by one of my boys.  I don't worry about the house except that it is a way to teach my boys domestic responsibility.  I don't worry about a lot of things now.  I used to stress about so much but I have truly given that up.

I have a stronger relationship with God.  I can get through this with His help. 

I have come to cherish my relationships with others.  MS is like a friend filter.  You learn who was never your friend and you develop new friendships that are stronger.  I have developed very strong friendships that have indeed sustained me through some rough times.  I have a an awesome best friend who picks me up tirelessly and laughs with me daily - even though she suffers from worms tongue .

I have found that doing for others is a real gift and a treat.  It gets my head off my problems and gets me thinking in new directions. 

I have learned that I am a courageous person.  I have a much stronger love and appreciation for myself.  I see what I can do while facing the challenge of this disease.  And while this disease may knock me down, it cannot keep my down unless I choose to stay down.  I choose to live and fight and enjoy every second I have on this earth. 

Love and prayers,

 

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/5/2008 5:23 PM (GMT -6)   
Wow Everyone!

So far so good! Thanks to all who've posted so far and i hope to see many more. I just know there has to be something to feel good about. I don't have ms nor do i fully believe i could anymore, but i've been on this 'mysterious health issues' journey for some time now..a little over two years ...and i've picked up a few of my own lessons along the way.

First i learned to love and feel compassion and empathy for others. I used to hear others talk about how they feel and would pretty much tune them out after about two seconds into it. I would ask 'how are u' but i didn't really want to fully know. Now i get it. Now i really care how someone is doing..because i'be been there myself. To feel compassion and love for others..even those u don't know or have never met...is a gift and is usually well earned.

Second i learned to love and love and love my world. To savor all of it as i live it...not just passing thru it. My world is not material objects nor wealth...it's the people who are part of my life. My family and my friends both in person and here.

Third i have gained the sweetest and dearest friends of my life in these last few years. Oddly enuf i have to say the ones i call my closest friends are my online friends. The people i've met here truely just get it. They..u..understand what it is that i went thru and the pains i sometimes still have. U are compassionate and caring and u have offered me help, support and advice when i needed it most. As others have said, when u get sick...long term especially...u find out who u'r real friends are. At first everyone wants to know how u feel and what's going on with u..then they begin to wane. They don't get it. Only on rare occassions do u find a friend who will stick by u no matter what...and most often those are friends who've been there too and can relate to u'r world as it is with illness.

Fourth...but far from last...i've also grown closer to God. There's nothing like finding u'rself in a place where u can do nothing about it on u'r own to teach u to reach out to the One who can.

Thanks to everyone who's posted so far. I sincerely hope others will also add to this thread and give everyone here a look at some of the brighter sides of life with chronic illness.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/5/2008 6:15 PM (GMT -6)   

I’m so glad you started this thread, Rhonda. Here’s some of what I’ve gained:

 

I’ve always loved to laugh, but I have a new appreciation for the importance of “funny,” and have found it amazing how much humor can help me get through rough times.

 

I’ve found out who my true friends are. I’ve also made some really amazing and compassionate new friends, who I would never have met otherwise.

 

I’ve learned to really appreciate and make the most out of days where I feel better, and to enjoy the little things in life, i.e. plants, squirrels. I am also more aware of how lucky I am in so many ways.

 

As several of you have already mentioned, I now know life is so much better when I take each day as it comes, and I don’t worry about the small stuff. Some days I am more successful than others at implementing this, but I now consciously know how important it is and aspire to live this way.

 


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 6:32 PM (GMT -6)   
Hello, Again, I have been looking around this site, I LOVE IT!!!! I love seeing how I am not the only one. But Seeing as you asked, I will have to force my positive experience. But Im gonna have to start from the beginning, OS you can see where I come from. When I was 13 was hit by a car(Christmas morning) was in the hospital 3 months. After breaking 33 bones, they decided to amputate My leg. Im sure is any of you know anyone who is an amputee, but its not exactly painless. A few weeks later, they decided that I didnt have enough clean skin due to the open wounds that they had to go and Amputate again, this time above the knee. Wow I said to myself. So I craied and cried, and again they did it. Now at age 13 I was in a Christian family, so I had many supporters, people who truly loved me praying for me. ANd gragually I recouped. As a teen, I was bound and determined, never to be handicapped. In fact I refused to get ahandicap placard. Everyone said, you need one, I said no I do not. Someone who has a hard time walsking needs one. Im fine. So I began the life a CONTROL. I had to take control. I went over and beyond the Norm. If it was a risk,,,I did it. I wanted to be strong.Although inside, I really wasnt that strong. I was such an angry person. Since the car accident, the man hwo ran me over, was on heroin. I hated him. ANd would go around guest speaking @ seminars on drugs and alcohol. How it effected me. Well then I turn 18...The man who hit, he asks me to forgive him. I did. ANd was the start of the BEst thing ever. HEre carrying such anger to an ailment was pintless right? So he and I go around together to prisons and churches, and talks on the act of forgiveness. So I think that was what I am here for. So what I lost my legg. I would do it all again. The man who hit me, is now a christian, and has also passed away from cancer. But his life changed. and then I found other peoples lives changed too. From seeing how It effected me to forgive, and how it effected him to forgive him self.
Ok so I go ona my meery way in life. Then I have a kids, and another, and Now I also have a wonderful husband. THen We get the news were having twins. WOW...talk about a shocker. By my 11th week, I cant feel my leggs, well I can feel them just couldnt move them, all of this within a 48 hour period. I was so scared, couldnt even wiggle my toes. So we call the oncall. dr,. He says no, your fine, Its the twins on a nerve....By morning...I cant even go to the bathroom. So my husband Carries me to the OR...a week in the hospital, they finally approve an MRI, and found I did have Lesions, so Im put on the 100 mg solumedrol. AND told Most likely Its Ms, but we have to wait for attack number two...to add the Multiple to it. So Just after a long pregnancy I get My second attack. Which in itself was weird. I was on the back of my husbands Motorcycles, and got Nystagmis(sp) So I felt like i was on a Merry-go-round on the freeway! Got a new Mri, and sure Enough I have it. I cried and cried, and cried. But then one day God comes and Taps my shoulder, and says lean on him, everything will be fine. So I do. Since I have numerous attacks. Even My sweet little Neurologist gets teary eyed when he tells me its getting worse. So Finally last year, Well...We just had a year chenge huh ? So in 06 i was told I should think long and hard to try TYSABRI. Reading all that in the packet really freaked me out. I was approved shortly after It went back on the market. I have a low immune system, and there are risks, Im sure you have all read on it, if your not already on it. Its not something to just jump in feet first like I would have done years ago. So I pray and pray and pray. My pastor, is like has God given you the ok yet? Im like the what?? What do you mean. He said, youll know with out a dougbt. So now Im in a panick...Im asking God all this, and he didnt let me know anything. I had a feeks to think it all over, talk it over with my family, and then give My neuro the go-or nogo. So Im on my way to the actually appt,,,and God still didnt make me feel like I should or should not...Im like...THIS IS GREAT! Well Im listeneing to music,I hear that song "Praise you in this storm" Then I suddenly get my answer. FOr the first time in my life I HEARD God talk to me....freaked me out really, anyhow, He told me....I Gave you your first breath, And I will choose when you t ake you last! ............I was like...Ok...So weather I take Tysabri or not ITS not gonna kill me. So It is a tool, I felt great with My decision to start it. So I have been on it, sonce, A little over a year now. And I learned that, Nothing is really bad. My kids, they now that I have it, and that I get down(meaning cant get out of bed) and they know that No matter what I still have faith. I still have Hope, and I still Love. With all my past detours, I know in my heart I am stronger because of it. And strong in my personal experience by no mean, means I dont cry or feel pain , or pray to be healed. I do cry, I do feel pain daily, and I do pray for healing, But I also know If I have to carry this burden til my last day I will carry it with My head up. And through the dark storms, I will find a rainbow. And If I do take my last breath, My kids will know that nothing on this Earth can really control how we live!REALLY live! Yes we have limits, and have to know when to quit. But I cant go aournd being angry about it.!

msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 6:34 PM (GMT -6)   
Hahaha Oops, My computer did a odd thing just now, no clue how it post that so many times...or how to delete the extras!! Im so sorry!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/5/2008 9:26 PM (GMT -6)   

Hey Mom,

You told a great story.  I have been wandering around reading your posts.  You are truly an inspiration.  Wow!! Thank you so much for posting.  I live in Cal. too.  And here is another odd coincidence.  The man I married is an amputee.  He lost his right foot after his friend hit him with a truck while he was riding a motorcycle.  I also have a friend who has two girls and tried one more time for the boy and got twins - but she got twin boys.  Shall we sing "It's a Small World" now??? 

So anyway, enough random thoughts for today.  Thanks for that really great story.  You are amazing.

Rhonda thanks for this great, great thread.  Thanks to everyone for posting.  Sunny, keep laughing.

Love and prayers,


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


msmomof4
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/5/2008 10:19 PM (GMT -6)   
Oh my, I just re-read My post, I feel the need to apologize for all my typos, Im just so tired today! Anyhow,
Gretchen, Thanks for the kind reply. I think each and every one of us, are an ispiration in our own ways. And to find the good in things is what people search for right? You know, before I was diagnosed, I knew next to NOTHING about MS...I always had it confused with MD. But When people ae just diagnosed, all they seem to hear is the negative right? People start feeling like its the END. But we know its not. Infact its the beginning to a new journey when we are diagnosed with MS. I get people all the time when they see me on a cructh, they say they are so sorry. I know they feel sad for us, but Its just a change of lifes coursem,Definately not the end.I wish we had more of the GREAT stories out thier in public, so when someone is in process of being diagnosed and does has the misforune of getting the " Im sorry to say, but you do indeed have MS" How scary was that day you find it out? Very. YEs its painful and annoying, but for real, It not the end. I wish I had known that on my day of diagnoses. It would have made it so much easier. When Im not on a down cycle, You will find me andmy fake leg and MS...Duck taped to a quad riding in the sand dunes. We just have to live differently right??
Again thanks for your kind words!

mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/6/2008 10:03 AM (GMT -6)   
I realized last night while laying in bed and hoping to go asleep (I eventually did) that I have been on this strange MS journey for 10 months now. I did not think I was going to make it past the first few months. I remember Gretchen told me in an early post that I was stronger than I thought and I thought she really does not know me. How can she say that???

So I guess I have discovered in the past few months that she was right.(Don't let that go to your head G:)) While there are days when I can still not believe I have this disease, I have come closer to accepting it. But that does not mean that I am not going to fight it. I am stronger than I thought! I remember when I first read about tysabri last Spring I thought I would never be willing to try it. It just sounds too dangerous. Well, I go for my second infusion next week and I am no longer afraid of it. I still worry over things which I have no control, but I am working on it.

There are also times during the day (when I am reading a good book, out to dinner with friends, watching a good movie, having an interesting discussion with my students, watching the presidential debates) when I even forget I have MS. I thought that would never happen.

I am also thankful for both my old friends that have been helpful and supportive and my new friends that I would never have met. And even though I do not have family living close by, they also have been very supportive and I now know they will be there for me if I need them.
Barb/mystery reader
Diagnosed April 2007


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/6/2008 1:50 PM (GMT -6)   

Barb!!!!!

Too late it already went to my head!!!  You rock!! Flex those big tough MS fighting muscles.  You ARE stronger than you think: we all are.  We need to be thinking that all the time and we need to be our own best cheerleaders!! yeah We can live with this and live can still be beautiful.  We are courageous and strong and we can do this and live with this have fun too. 

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


littlechina
Regular Member


Date Joined Jan 2007
Total Posts : 97
   Posted 1/10/2008 11:19 PM (GMT -6)   
Thanks so much for starting this thread. I have really been struggling lately...letting everything get to me. I've been so down. I really needed to read this. It made me stop and think that, yes, I have gained a lot from my MS too. Probably more than I've lost, actually. I'd love to post about it, but it's late here and I have an early day tomorrow. But I just wanted to say thanks to everyone for sharing. It helps to read others perspectives.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/15/2008 8:21 AM (GMT -6)   
Hey Nikki

I"m so glad u posted here! How are u doing??? I"m so thankful for what u've said here...that u could have gained more than u've lost. What a fantastic way to see things!! U are a hero...hold u'rself high friend. Not only can u find a good way to see this, but u also see the pain and weakness involved in MS. Never ever feel wrong or bad on the days u need to just let things go...to maybe have time to mourn...but when u can and are ready, pull u'rself up like u have here and get going on that battle again! Kudos friend!!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 1/17/2008 8:10 PM (GMT -6)   
I have to agree God comes first and we were somehow "chosen" for this disease,It is true the expression you are never given more than you can handle.And I feel that we are all stronger than before in our way whether it be being able to laugh when you take a tumble..Keep your head held high no matter what is thrown our way.The friendship thing is oh so true .You know who is and isnt your friends and ppl u never expected to be your friends pull through for you.And my family iI have been truly blessed there while it was not planned for me to havw my own children I have become so close to my nephews and enjoy every moment with them.So i can give them all my attention and they dont mind if I cant play with them like everybody else does.I give them all that I have and they are a treasure to me. barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/17/2008 8:33 PM (GMT -6)   

Hey Barb,

Thanks for posting.  Aunts are wonderful, wonderful people.  I am glad you are choosing to be the best Aunt you can be to your nephews.  It truly takes a village to raise good kids these days and we need all the help anyone can give us.  Thanks for doing all that you do. 

Love and prayers,

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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