***Is Anyone As MAD As I Am?***

[tracibk]

I had to tell my 9 year old that I could not go with her to play mini golf because it was too hot/humid at 2:30 in the afternoon.....I waved to her as she drove away in another mom's car. Doesn't seem like a big deal but it was to her. That was one of MANY times of "sorry I can't". When I can't do things with my kids it makes me angry and sad

[Brittan]

Over 10 years ago, I was told I had the text book symptoms of MS and Lupus but they did not diagnose me and said it could take 6-10 years before manifestation would arise to be able to diagnose me or even treat me.

Well at first I was devastated, mad, sad, depressed but you know what after considering that it took them 4-5 years just to get some kind of "might be" diagnosis ... I think I that point I was just glad to hear something.

At the beginning the docs kept testing for lymes, ms, lupus and tons of other autoimmune diseases. I was devastated. They would treat the symptoms sometimes and other times blow it off so I started researching things that would help me to treat the symptoms. Reason being for many years I went to at least 2 doctors a week trying to find out what was wrong and it was no help.

I think in that period I coped w/ knowing it could be ms or lupus or who knows what else. I was more upset w/ the damage it can cause not necessarily mad.

Having a diagnosis at least gives you hope to find something that helps versus not knowing what it is and therefore lacking the knowledge of where to look for help.

I think because of all the years I've wasted in trying to get a diagnosis or feedback helped me to overcome the anger, sadness, depression or what ever emotions because yes we have MS but it's a diagnosis we're not happy with but look at other illnesses like cancer and many other illnesses that are worse than MS and given so many days to live forecast.

Be grateful and think of the cup as half full because it could be a lot worse. Take everyday - day by day. Don't dwell on what you can't do but be thankful for what you can do.

Cheer up and it's normal to frustrated, angry, sad when first diagnosed... we've all been there and we know what your going through. Big hugs!

[palmtree]

Anger, yes. But lately it's RAGE. Biogen tried to cut off my Tysabri infusions and I spent 900 cell phone minutes to get Tysabri back, but the infusion came 2 weeks late. During that 2 weeks I had a flare. I've lost my ability to walk and I don't know if I will get it back. RAGE. To never walk again? I was diagnosed only 3 years ago. I'm scared and I feel impotent rage. This could have been avoided.

You feel your anger. That is a strength. If you try to pretend its not there it will eat you alive. Of course we have to think of our loved ones. It's usually the anger that we deny that seeps out and lands on them.

[Robbie67]

I am mad n angry

Hi apple. I am here now mad angry confused. I am newly dx'ed my whole world is spinning n changing. I relate to ur feelings. Im waitn in another mri reading tomorrow. I had trigminal neuralgia this flare. I am a single mom of 2 great boys and this is all new. I was dx out of the blue my oldest is 13 n not understanding and i dont understand. I pray everyday to keep me positive. But i am angry all the time. It seems. Good luck all. Love Laugh Live!

[miwealia]

Not exactly angry...

I'm really new to MS (just dx'd last month, with symptoms for only another 8 months previously), so I think I'm still in the process of coming to terms with the fact that I have MS.

I think I'm in mourning rather than angry. I certainly don't have any people - as in doctors - to point my anger at, as you do, Apple, so maybe that's one reason.

I clearly remember the hour that the doctor told me I most likely had MS, two months before the confirmation of that preliminary diagnosis. I don't exactly know what I was expecting (he was just running some tests to figure out why my balance was bad!), but I can tell you, when he showed me the lesions on the MRI and said, "It looks like you have Multiple Sclerosis," I was just numb. I didn't know what to think.

Then I remember thinking, "I'm heading for a wheelchair," and that let loose a flood of thoughts focused on all of the things that I WOULDN'T be doing for the rest of my life.

That's when my faith kicked in, and I was reminded of the multitude of blessings that my MS can't touch - the love of my wife and grown kids, and my parents and my mother-in-law, all of whom have been SO supportive; great friends from all over the world who have constantly been sending me messages of encouragement; and my Lord, who, even though he certainly didn't cause the MS, he's used it to teach me SO many lessons, mainly about myself and my own selfishness. My heart is so much softer toward the people around me than it used to be.

So yeah, I haven't gotten angry, at least not yet. It's still early in the process, so maybe that's coming later. Right now, I'm just trying to gracefully let go of my dreams and figure out what I'm supposed to replace them with. But I've got a pretty reliable Guide, so I think that'll come in time.

[trevor022]

Sorry

I just want to say that I am sorry to hear all of this. You can't control what happened before but you can control your current state and your future. Be thankful that it wasn't 10+ years and smile!
I know that this might not help or be what you want to hear but things could be worse. Doesn't mean it still doesn't suck though.

[sweetydcruze]

No one here is as mad as you are buddy

[Wordsgood]

Oh yes, we do understand! I am the Queen of anger and have been through and endless rounds of tests only to find out last fall that I've it the better part of my life. Still not on a DMD, nor has one been offered.

I had to go on disability years before the dx, and even now that I finally have one, I'm still facing a lot of folks who think I'm just a lazy cow, because like most people who haven't progressed (yet) to the point of needing a walking aide or chair/scooter, I "look good."

Fortunately, though, I don't have any kids at home. (Have two grown, unofficial foster daughters - long story.)

But, 8 months in and I'm learning, ever so slowly, to find a life. I can't honestly say get my life back, because until a couple months ago, I wasn't really allowed to have a life of my own. (Another long story.) But now that I've finally made it clear to family members that I've done my time, and I can't keep putting other people's needs before that of myself and my husband, I'm slowing learning to let go of certain things.

I'm learning to, albeit painfully, that I will never again be able to do many things I used to be able to. I'm learning to accept that the dreams I had put on hold for so long thinking that once the doctors finally figured out what was actually wrong, and once family obligations were finally over, I could somehow start again. But I can't, none of us can.

I hate being a burden on my husband. I hate that certain family members have dropped me as though I have leprosy, and that certain so-called friends drifted away after I had to stop working and didn't "get better" like they expected. But, I am finally learning to let go of them and slowly, ever so slowly, the anger, hurt and resentment.

And you know what, despite all the things I've lost, I'm finding that a few true friends have stuck by me, and by us. They may not fully understand the MS or how it affects my daily life, but they love and accept me for who I am, not who they want me to be. And I'm finding new friends online who are genuine and DO care, as well as new ones offline through outlets I'd never explored before.

The best advise I can offer is exactly what I was offered here. Take one day at a time, one minute at a time if you have to. Be as angry as you need to be for as long as you need to be. Mourn your past, present and future. And eventually, you will realize it doesn't take up every single moment of your thoughts.

I've not reached the point where it's not taking up much of my thoughts, but at least I'm starting to have moments, sometimes even hours(!), where it isn't the always the first thing in my brain. I'm hopeful that means I might actually be able to finally let go of the anger one day. Maybe not all of it, but I'd settle for a the majority leaving!

Be kind to yourself. Do whatever you need to in order to lower your stress. And remember you are not alone. There is a lot of us here for you, and we DO understand. And finally, remember to come back anytime to vent, ask questions, or just seek support.

Big Hugs!

P.S. This goes out to everyone else who responded to Apple that is having a rough time as well.

[mjan]

Oh yes, we do understand! I am the Queen of anger and have been through and endless rounds of tests only to find out last fall that I've it the better part of my life. Still not on a DMD, nor has one been offered.

I had to go on disability years before the dx, and even now that I finally have one, I'm still facing a lot of folks who think I'm just a lazy cow, because like most people who haven't progressed (yet) to the point of needing a walking aide or chair/scooter, I "look good."

Fortunately, though, I don't have any kids at home. (Have two grown, unofficial foster daughters - long story.)

But, 8 months in and I'm learning, ever so slowly, to find a life. I can't honestly say get my life back, because until a couple months ago, I wasn't really allowed to have a life of my own. (Another long story.) But now that I've finally made it clear to family members that I've done my time, and I can't keep putting other people's needs before that of myself and my husband, I'm slowing learning to let go of certain things.

I'm learning to, albeit painfully, that I will never again be able to do many things I used to be able to. I'm learning to accept that the dreams I had put on hold for so long thinking that once the doctors finally figured out what was actually wrong, and once family obligations were finally over, I could somehow start again. But I can't, none of us can.

I hate being a burden on my husband. I hate that certain family members have dropped me as though I have leprosy, and that certain so-called friends drifted away after I had to stop working and didn't "get better" like they expected. But, I am finally learning to let go of them and slowly, ever so slowly, the anger, hurt and resentment.

And you know what, despite all the things I've lost, I'm finding that a few true friends have stuck by me, and by us. They may not fully understand the MS or how it affects my daily life, but they love and accept me for who I am, not who they want me to be. And I'm finding new friends online who are genuine and DO care, as well as new ones offline through outlets I'd never explored before.

The best advise I can offer is exactly what I was offered here. Take one day at a time, one minute at a time if you have to. Be as angry as you need to be for as long as you need to be. Mourn your past, present and future. And eventually, you will realize it doesn't take up every single moment of your thoughts.

I've not reached the point where it's not taking up much of my thoughts, but at least I'm starting to have moments, sometimes even hours(!), where it isn't the always the first thing in my brain. I'm hopeful that means I might actually be able to finally let go of the anger one day. Maybe not all of it, but I'd settle for a the majority leaving!

Be kind to yourself. Do whatever you need to in order to lower your stress. And remember you are not alone. There is a lot of us here for you, and we DO understand. And finally, remember to come back anytime to vent, ask questions, or just seek support.

Big Hugs!

P.S. This goes out to everyone else who responded to Apple that is having a rough time as well.

Just wanted to thank you for sharing your experience and for "keeping it real"..

Know that I will try to understand and support you too. As I too have had MS (and other medical problems) force me to lose my career and re-arrange my life, once again.

Hugs to you and yours~

Jan

[Long Time Survivor]

Anger, the repeating stage.

I can relate to the anger issue. I had my first MS symptoms over 25 years ago, in the 80's. My diagnosis did not come until 5 years ago. Angry that it wasn't treated for all of those years.

Sometimes I find that certain things make be more angry than others. I deal with my MS issues every day, but that doesn't make me angry. For some reason and I don't know why, I can't read about MS without getting angry at it! An MS magazine showing up in the mail just really makes me mad. I can go to doctors, MRI's, you name it - I'm fine. Reading about it just makes me want to throw the magazine against the wall. Probably why it's taken me so long to get past the anger to come to this board.

Maybe all of those years not being diagnosed with it put me into a kind of a forced denial that even though I had to deal with all of my MS problems - I didn't have to face that I actually had it.

I don't know, but try to find out if something in particular is making the anger worse and then try to deal with that. Sometimes it's a stage that changes with the disease.

[bobus498]

I know exactly how you feel Long Time Survivor.

I was diagnosed in 2009 but by that time, I had been complaining of SOME OF THE MOST COMMON SYMPTOMS OF RRMS FOR ALMOST 15 YEARS.

Now, 4 years later I am told that I have transitioned into secondary progressive MS and

I'M MAD AS HELL!!!