kchs1
06-19-2005, 01:27 PM
Yesterday Was My 9th Day Since Being Diagnosed With Ms... And My Most Difficult. My Emotions Were Flying, I Couldn't Stop Crying, Couldn't Stop Myself From Being Mad. Mad At Myself, Mad At The World!
Funny Thing Is I Dont Feel Sorry For Myself. I Felt Like I Dont Wanna Be Here On Earth, Not Because Of Self-pitty. But Rather Because I Feel Like Im Robbing Everyone In My Immediate Life Off Their Own Life. I Cant Be Left Alone So I Won't Fall Or Burn Myself And Not Know Or Something. I Feel Like If I Were Not Here And In This Situation That The People Around Me Would Be Able To Do As They Please And Not Have To Cancel Functions Cause Someone Has To Be Around Me Constantly. I Cant Even Go To The Bathroom Without Some Form Of Supervision.
I Know That There Are People Out There Who Have It Worst , I Sympathize With Them. But Tell Me Is My Situation Not Bad? I Have Legs And Know That They Are There Simply Because I Can See Them Or When They Hurt Feel Them. Besides That They Dont Feel Like They Belong To Me. Im Only 25. Right Now Everyone Has To Reshuffle Their Life So They Can Help Me...
Im Trying To Be Positive, One Day Is Easier Than The Next. Sometimes The Pain Is So Grave That All I Can Do Is Laugh Like I've Lost My Mind To Keep From Crying.
And There Are People Out There With Everything Going For Them And They Are Still Not Happy And Are Complaining. One Of My So Called Friends Being One Off These People. She Wanted A New Job, Got It, Healthy And So Forth And She Has The Nerve To Tell Me Oh Dont Worry You'll Be Fine Just Try And Suck It Up!! Can U Believe Her? Friend...? Dont Think She Is. Its Always About Her. S***, I Would Give Anything To Be Able To Just Take A Shower On My Own Like I Once Could.
I'm Still Counting My Blessings Through It All...why? Cause I Still Have The Breath Of Life.
Trying To Cope And Keeping Positive
Its Hard But I'm Trying
Kchs[/color][/COLOR]
Funny Thing Is I Dont Feel Sorry For Myself. I Felt Like I Dont Wanna Be Here On Earth, Not Because Of Self-pitty. But Rather Because I Feel Like Im Robbing Everyone In My Immediate Life Off Their Own Life. I Cant Be Left Alone So I Won't Fall Or Burn Myself And Not Know Or Something. I Feel Like If I Were Not Here And In This Situation That The People Around Me Would Be Able To Do As They Please And Not Have To Cancel Functions Cause Someone Has To Be Around Me Constantly. I Cant Even Go To The Bathroom Without Some Form Of Supervision.
I Know That There Are People Out There Who Have It Worst , I Sympathize With Them. But Tell Me Is My Situation Not Bad? I Have Legs And Know That They Are There Simply Because I Can See Them Or When They Hurt Feel Them. Besides That They Dont Feel Like They Belong To Me. Im Only 25. Right Now Everyone Has To Reshuffle Their Life So They Can Help Me...
Im Trying To Be Positive, One Day Is Easier Than The Next. Sometimes The Pain Is So Grave That All I Can Do Is Laugh Like I've Lost My Mind To Keep From Crying.
And There Are People Out There With Everything Going For Them And They Are Still Not Happy And Are Complaining. One Of My So Called Friends Being One Off These People. She Wanted A New Job, Got It, Healthy And So Forth And She Has The Nerve To Tell Me Oh Dont Worry You'll Be Fine Just Try And Suck It Up!! Can U Believe Her? Friend...? Dont Think She Is. Its Always About Her. S***, I Would Give Anything To Be Able To Just Take A Shower On My Own Like I Once Could.
I'm Still Counting My Blessings Through It All...why? Cause I Still Have The Breath Of Life.
Trying To Cope And Keeping Positive
Its Hard But I'm Trying
Kchs[/color][/COLOR]
Sponsor
baddoey
06-19-2005, 02:10 PM
I'm so sorry that you are having such a terrible time - I know what you are saying about the feeling that you having MS is going to have on other peoples lives. I am also newly dxed - my symptoms are very mild thought at this time, but I am very scared about the future. I have no family close to where i live - my mother and sister live overseas, and only a few of my friends know. I've learned that some people I just cant talk about it with, bc they just say "you will be fine, you are so strong". My sister, while I'm sure she is trying to be supportive, in saying that I shouldn't be worried about being in a wheelchair later in life and i shouldn't be scared. . . she just doesn't get it - so i've decided that i just can't talk to her about my fears about the future. I always think about "letting people down", no matter who it is - i'm just hoping that I will be able to take care of myself for a long time and not be a burden to anyone.
kchs1
06-19-2005, 02:11 PM
Need To Ask... Does Anyone Else Feel Like Me At Anytime Or Is It Just Me...?
kchs1
06-19-2005, 02:18 PM
Baddoey, I Hope U Dont Get To The Point Im At. But Im Newly Dx And It So Advanced Already So I Need To Depend On Others. Im Young And So Used To Being Independent, That I Know Im A Burden. My Mom Lives All The Way In The Caribbean., She'll Have To Retire Early To Move To Ny To Help Me...
I Just Hope That I Get A Good Spell Sometime Soon Cause Right Now...it Aint Easy.
I Just Hope That I Get A Good Spell Sometime Soon Cause Right Now...it Aint Easy.
KelliD
06-19-2005, 02:18 PM
Kchs....what type of MS were you diagnosed with? What have the docs said about this exacerbation? Prognosis?
I do completely understand your emotions...and every single one of them is a normal reaction to this thief of a disease.
I am so sorry your friend is not more sympathetic. I have a similar friend. We have been closer than sisters, yet she can't - or doesn't want - to deal with what is happening in my body. I am cutting her some slack...I figure she doesn't know WHAT to say, but feels the need to say SOMETHING, and unfortunately, it's usually the wrong thing. MS is hard to grasp for those who don't deal with it in their own bodies because it is mostly invisible...and you can't just take an aspirin and a nap and automatically wake up feeling better.
Stay in touch on the boards...this is a good place to vent and ask questions, to encourage and be encouraged.
You said you are just 25. WHat you are going through is lousy to say the least. But know this, and I say this because I have been where you are, MS is NOT the END of life. It IS a different life. Not the one you signed up for, for sure....but don't throw in the towel. Cry when you needto cry, laugh every chance you get. And start seeking out ways to make things work for you, not against you.
I know that all sounds easier said than done. You are still new in your diagnosis and you're having to digest a lot. Let us help, will you? Keep talking to us!
I do completely understand your emotions...and every single one of them is a normal reaction to this thief of a disease.
I am so sorry your friend is not more sympathetic. I have a similar friend. We have been closer than sisters, yet she can't - or doesn't want - to deal with what is happening in my body. I am cutting her some slack...I figure she doesn't know WHAT to say, but feels the need to say SOMETHING, and unfortunately, it's usually the wrong thing. MS is hard to grasp for those who don't deal with it in their own bodies because it is mostly invisible...and you can't just take an aspirin and a nap and automatically wake up feeling better.
Stay in touch on the boards...this is a good place to vent and ask questions, to encourage and be encouraged.
You said you are just 25. WHat you are going through is lousy to say the least. But know this, and I say this because I have been where you are, MS is NOT the END of life. It IS a different life. Not the one you signed up for, for sure....but don't throw in the towel. Cry when you needto cry, laugh every chance you get. And start seeking out ways to make things work for you, not against you.
I know that all sounds easier said than done. You are still new in your diagnosis and you're having to digest a lot. Let us help, will you? Keep talking to us!
kchs1
06-19-2005, 02:29 PM
Thanks Kelli. I Stay On Here Now That I've Found You Guys. I Need To Be Here. I Will Keep On Asking And Venting. Thanks For Allowing Me To. They Told Me Its Remitting-relapsing Ms. I Just Got Out Of The Hospital On Tuesday, Was There For 7 Days. I Couldn't Form A Step Or Anything When I Went In. I'm A Lil Better Cause I Can Now Do It Like A Baby. U Know 1-2 Hold, 1-2.
They Put Me Right Away On Iv Steriods. Im Now On Prednisone... Oral Steriods. I Stop The Steriods This Friday. I Go Back On The 30th Of This Month. My Team Neuros Are Kool, They Tell Me Alot (well What They Can) And Told Me About Here. I Should Be Starting On Rebif Soon.
They Put Me Right Away On Iv Steriods. Im Now On Prednisone... Oral Steriods. I Stop The Steriods This Friday. I Go Back On The 30th Of This Month. My Team Neuros Are Kool, They Tell Me Alot (well What They Can) And Told Me About Here. I Should Be Starting On Rebif Soon.
KelliD
06-19-2005, 04:56 PM
MS can be so quiet...not give you a single problem for weeks, months, years...then an exacerbation hits and it can knock the wind out of your sails. I'll be so happy for you when you reach the other side of this flare-up. It sounds like a rough one.
It's encouraging that your neuro's tipped you off to this site. I would also encourage you to do as much research as you can online...learn about MS, how to cope, what works, what doesn't. It really does help!
It's encouraging that your neuro's tipped you off to this site. I would also encourage you to do as much research as you can online...learn about MS, how to cope, what works, what doesn't. It really does help!
Jewel2
06-19-2005, 08:36 PM
Hi Kchs,
I'm very sorry to hear of your diagnosis and your struggles. I am the mother of a 25 year old with aggressive MS. She was diagnosed at the age of 19. I am her primary caregiver when she is not doing well. I've had to fully toilet her and do many other tasks that I think were harder on her than me.
I want to reassure you that from a mother's perspective, I don't feel 'robbed'. Yes, I have had to change my plans many times to take care of her. But I feel blessed to have her as a daughter, and if this is what I need to do to help her live her life safely and to the fullest, then I don't view it as a chore or like I'm giving up my life. We have a pretty big family, and everyone feels the same way. We all gladly pitch in to help her.
She has expressed despair and guilt many times just like in your first post. I think what you feel is very natural. I'm glad you came her to share your feelings and get support. My daughter sees a chronic illness psychiatrist to help her with these issues and others. If you have this option, you might explore this.
The first year or two are the most difficult. Everybody goes through a period of adjustment with so much to deal with and a whole new realm to learn about. Also, it seems like MS often hits hardest at the outset and then settles down a little. Hopefully this will be the case for you. Have you started a therapy to try to slow it down?
I know that I will have to live in the same city as my daughter for the rest of my life. I'm perfectly okay with this. We're in this together for the long haul, we enjoy each other's company, and we're closer than ever.
Best to you,
Julie
I'm very sorry to hear of your diagnosis and your struggles. I am the mother of a 25 year old with aggressive MS. She was diagnosed at the age of 19. I am her primary caregiver when she is not doing well. I've had to fully toilet her and do many other tasks that I think were harder on her than me.
I want to reassure you that from a mother's perspective, I don't feel 'robbed'. Yes, I have had to change my plans many times to take care of her. But I feel blessed to have her as a daughter, and if this is what I need to do to help her live her life safely and to the fullest, then I don't view it as a chore or like I'm giving up my life. We have a pretty big family, and everyone feels the same way. We all gladly pitch in to help her.
She has expressed despair and guilt many times just like in your first post. I think what you feel is very natural. I'm glad you came her to share your feelings and get support. My daughter sees a chronic illness psychiatrist to help her with these issues and others. If you have this option, you might explore this.
The first year or two are the most difficult. Everybody goes through a period of adjustment with so much to deal with and a whole new realm to learn about. Also, it seems like MS often hits hardest at the outset and then settles down a little. Hopefully this will be the case for you. Have you started a therapy to try to slow it down?
I know that I will have to live in the same city as my daughter for the rest of my life. I'm perfectly okay with this. We're in this together for the long haul, we enjoy each other's company, and we're closer than ever.
Best to you,
Julie
kchs1
06-19-2005, 09:44 PM
Thanks Kelli. I Am Doing Lots Of Research. Everyday Is A New Light And Experience. And This Flare Up Is No Joke. I Cant Wait Till All This Pain And Lack Of Motor Skills Subside Or Go Away
kchs1
06-19-2005, 09:52 PM
Thanks For Your Wishes Julie. Its Kinda Hard On My Mom Because Its Not Just An Ajustment To A Different State Or City. Its A Whole Different Country. She Is Extra Supportive And Been Here, Its Just That Her Life Been Out There Except For Vacations. She Is Very Supportive And Will Do Whatever She Has To Do To Be There For Me. We Are Very Close And Getting Closer...but She Has To Settle All Her Work And Home Stuff Before She Can Make Her Permanent Move. So I Feel Kinda Lousy About The Whole Thing.
One-Cent L
06-21-2005, 08:28 AM
You have been on my mind a lot over the last couple of days. Really, there is not much a person can say to offer encouragement, but those who cannot make a positive, well-thought-out comment should learn to just say nothing. I'm sure your friend has no idea how unwise and hurtful her comments were--people just don't think before they talk.
I do want to offer what has helped me in many life-crisis--including health issues. Many of my most horrible circumstances in my life have been brought on by a process of reaping what I have sown (results of bad dicisions).
I have learned to keep focusing on the fact that I have been created for a purpose. I am not a mistake. Nothing about me is a mistake since God does not make mistakes. Therefore, if I am here and living in the exact situations I am living in right now there must be a purpose for it. So what is it? How can I be used to make the world a better place?
Who knows? God may have a mighty plan to use you as a spokesperson for MS. You may be used to be an inspiration to many who need encouragement and support. It may be only to those around you or it may be on a big-scale where you can be a writer or a speaker.
Often my mind goes to Joni Erakson Tadi. She is a quadrapalegic due to an accident in her late teens I beieve. She has become a nation-wide speaker and successfull writer, not to mention an inspiration to anyone who comes into contact with her.
Yesterday, I was outside and I just thought, "God, if you want me to have MS--or whatever--fine. I'll have it. If it's how you can best use me while I'm here on this earth, then fine. I accept it."
We can all be of use. We can all be a light on a hill to those who live in darkness. We have a great purpose and I don't want to miss out on what I am supposed to be simply because this isn't what I had pictured.
If my words do not help, please know that I do feel for you.
I am sorry for your frustrations and for your pain.
God bless you abundantly.
I do want to offer what has helped me in many life-crisis--including health issues. Many of my most horrible circumstances in my life have been brought on by a process of reaping what I have sown (results of bad dicisions).
I have learned to keep focusing on the fact that I have been created for a purpose. I am not a mistake. Nothing about me is a mistake since God does not make mistakes. Therefore, if I am here and living in the exact situations I am living in right now there must be a purpose for it. So what is it? How can I be used to make the world a better place?
Who knows? God may have a mighty plan to use you as a spokesperson for MS. You may be used to be an inspiration to many who need encouragement and support. It may be only to those around you or it may be on a big-scale where you can be a writer or a speaker.
Often my mind goes to Joni Erakson Tadi. She is a quadrapalegic due to an accident in her late teens I beieve. She has become a nation-wide speaker and successfull writer, not to mention an inspiration to anyone who comes into contact with her.
Yesterday, I was outside and I just thought, "God, if you want me to have MS--or whatever--fine. I'll have it. If it's how you can best use me while I'm here on this earth, then fine. I accept it."
We can all be of use. We can all be a light on a hill to those who live in darkness. We have a great purpose and I don't want to miss out on what I am supposed to be simply because this isn't what I had pictured.
If my words do not help, please know that I do feel for you.
I am sorry for your frustrations and for your pain.
God bless you abundantly.
kchs1
06-21-2005, 09:40 AM
Wow! You Know What , Yesterday I Ws Speaking With One Of My Few Really Good Friends And I Was Telling Him You Know What Im At The Point Where I'm Like "god If I Have To Go Through This Hell On Earth With Ms Right Now So That I Can Be Totally Recovered, Which They Dont Think, So That I Can Go Into The Multitude Of The Congregation And Stand And Say... Oh Taste And See That The Lord He Is Good And His Mercies Endures Forever...use Me Lord!"
It's Also Funny That You Would Talk About Being A Writer... I've Been Writing Short Stories And Poems Since I Was 12 And Performing Live Since 19. Haven't Performed In Six Months Because I Sprained My Ankle And Everything Just Started Spiraling Downhill From There... And Now The Dx.
Also For Years I've Been Contemplaiting A Book On My Life. I Knew I Was Going To Do It But Never Knew What The Title Was Or How To Start...i Do Now As Of Last Friday, It Was Revealed To Me. So Watch Out...! (smile)
Thank You So Much For Having Me In Your Thoughts And For Your Blessings. May God Keep You And Shine His Face Upon You As We Find Hope Living With Ms.
Blessings.
It's Also Funny That You Would Talk About Being A Writer... I've Been Writing Short Stories And Poems Since I Was 12 And Performing Live Since 19. Haven't Performed In Six Months Because I Sprained My Ankle And Everything Just Started Spiraling Downhill From There... And Now The Dx.
Also For Years I've Been Contemplaiting A Book On My Life. I Knew I Was Going To Do It But Never Knew What The Title Was Or How To Start...i Do Now As Of Last Friday, It Was Revealed To Me. So Watch Out...! (smile)
Thank You So Much For Having Me In Your Thoughts And For Your Blessings. May God Keep You And Shine His Face Upon You As We Find Hope Living With Ms.
Blessings.
kchs1
06-21-2005, 09:41 AM
OH AND ONE-CENT,..,. U SOUND LIKE MY MOM... :p :p :p :cool:
KelliD
06-21-2005, 09:52 AM
You guys have encouraged me HUGELY this morning! I have shared similar sentiments with family and friends in the church.
Do I want MS? No! Do I want God to heal me? Of course! Is it His desire to heal me or allow me to walk through this for some reason...? It seems, from my perspective, that I am going to be walking this out. Sometimes it's hard and I cry or I am grouchy as a bear, but I am okay. Ecclesiastes tells us that God makes all things beautiful in His time. I have watched Him do it through something as ugly as MS.
I would not have not have sought out this board had I not been dx'd. That's the simple truth. And look at the treasures I have found in all of YOU who are here...which I would not have, had it not been for the MS. I can't be bitter. I'm too thankful! I wouldn't trade YOU all for anything!!
Do I want MS? No! Do I want God to heal me? Of course! Is it His desire to heal me or allow me to walk through this for some reason...? It seems, from my perspective, that I am going to be walking this out. Sometimes it's hard and I cry or I am grouchy as a bear, but I am okay. Ecclesiastes tells us that God makes all things beautiful in His time. I have watched Him do it through something as ugly as MS.
I would not have not have sought out this board had I not been dx'd. That's the simple truth. And look at the treasures I have found in all of YOU who are here...which I would not have, had it not been for the MS. I can't be bitter. I'm too thankful! I wouldn't trade YOU all for anything!!
kchs1
06-21-2005, 10:06 AM
Thanks Kelli. And You're So Right. We Wouldn't Have Found Each Other And All The Others If We Weren't Told... You Have Ms.
Its Hard To Digest, Its Painful, Its Frustrating, But We Inspire Each Other And Bring Hope. And I Thank God For Every Last One Of You On Here, And Through God And With Each Other We Will Find Hope And Strength.
Amos Chapter 5 Verse 4 Says... "seek Ye The Lord And Ye Shall Live..." So You Know What I'ma Seek Him.
And I Too Wouldn't Trade Any Of You For Aaannnyyyttthhhiiinnnggg!!!!!
You Guys Have Become My Family In These Few Days On Here. I Have Become Stronger And More Positive Because Of Each Of You Some Way Or The Other.
And I Thank You
Keren
Its Hard To Digest, Its Painful, Its Frustrating, But We Inspire Each Other And Bring Hope. And I Thank God For Every Last One Of You On Here, And Through God And With Each Other We Will Find Hope And Strength.
Amos Chapter 5 Verse 4 Says... "seek Ye The Lord And Ye Shall Live..." So You Know What I'ma Seek Him.
And I Too Wouldn't Trade Any Of You For Aaannnyyyttthhhiiinnnggg!!!!!
You Guys Have Become My Family In These Few Days On Here. I Have Become Stronger And More Positive Because Of Each Of You Some Way Or The Other.
And I Thank You
Keren
linda-sue
06-21-2005, 01:48 PM
Well, I pray for wisdom daily and I was praying that God would give me the exact words to say that you needed to hear. So, there is no doubt that it was a "Word" from God and not me. He, no doubt, wants to use you. He wants to use us all of we are just willing instruments to be used to bring Him glory. MS or whatever...if this is how he wants to reach the most people through you, then so be it.
I am so thankful we speak the same language.
May be all have eyes to see and ears to hear what He is telling us and showing us.
It's all about Him...and not about us.
And...I will consider it a compliment that I sound like your mom.
If you know the Ginny Owens song, "This may not be the way I would have chosen, when you lead me down a world that's not my own, but you never said it would be easy...only that I'd never go alone..."
Ginny Owens is an awesome singer. She's been blind since childhood. Her songs would bring healing to you all.
--1
I am so thankful we speak the same language.
May be all have eyes to see and ears to hear what He is telling us and showing us.
It's all about Him...and not about us.
And...I will consider it a compliment that I sound like your mom.
If you know the Ginny Owens song, "This may not be the way I would have chosen, when you lead me down a world that's not my own, but you never said it would be easy...only that I'd never go alone..."
Ginny Owens is an awesome singer. She's been blind since childhood. Her songs would bring healing to you all.
--1
KelliD
06-21-2005, 03:08 PM
Ginny Owens' music IS awesome! We play it on the air where I work. Very encouraging, healing, peaceful...