Originally Posted by FluteMaker

this is a rant about being depressed

Originally Posted by FluteMaker

im only 39 years old. ive been diagnosed with relapsing/remitting multiple sclerosis. making me a second generation MSer.

Originally Posted by FluteMaker

im not sick. im not ill. im diseased.what? like this was my idea? like this was something i signed up for? i keep thinking of all the things that i have to put on hold or forget altogether now that ive been diagnosed.

Originally Posted by FluteMaker

i was making plans to get a horse.thats out the window now. i have a friend who lives a bit east of cincinatti with about 100 acres with trails and stables who was going to let me keep the horse there. but now i also have about 30K$ in hospital bills to pay before i consider a horse.granted, thats sorta immaterial, i didnt need a horse anyway. but i feel somewhat robbed.after that stay in the hospital our savings are shot.our plans for that honneymoon we never had are on indeffinate hold. again. we were going to go to ireland for a week.

Originally Posted by FluteMaker

my neureologist wanted me to start on copaxone for the MS right away.i cant afford that. i checked with the walgreens down the street from my house as to how much it costs. from there,off the shelf, list price is 2815$ a month.even with our insurance its still going to run 1496$ every three months.jeez, the insurance itself cost us 1880$ every three months and we've already gotten a notice that the premium is going up next year after i turn 40. we checked with copaxones 'shared solutions' people to see about getting financial aid and were turned down. it seems my wife makes too much money.

Originally Posted by FluteMaker

according to the folks at SSDI, im still capable of working. obviously not in my chosen field of the building trades,but i can still do something.

Originally Posted by FluteMaker

ive always tried to remember that no matter how bad i thought i had it, theres someone,somewhere in the world who has it worse. but im really getting tired of things piling up on me and my wife. shes getting all this crap too. and its because of me. she certainly didnt sign up for this. i know it wasnt her idea.but shes the one dealing with it right along side of me. that line from a charlton heston movie keeps comming to mind; 'youre a better one than i, gunga dhinn'.
i told her a long time ago if anything like this came to be and she felt the need to split, i'd understand. but shes still here.

Originally Posted by FluteMaker

as much as im sure people dont know quite how to react to me now, thats how mugh i dont know how to react to them. ive only been officially diagnosed since sept 8th but ive already gotten 'but you look so good' from a few of my friends.

Originally Posted by FluteMaker

the first time i use my handicapped parking pass someone shouted from across the parking lot 'you dont look real handicapped'. i shouted back 'you dont look like a jack azz'.

Originally Posted by FluteMaker

people keep telling me to 'keep a stiff upper lip'. i would if i could feel my upper lip.

Originally Posted by FluteMaker

they tell me to 'keep a sense of humor about things'. ive always had a somewhat twisted sense of humor, but what the hell is funny about MS? whats funny about a pile of bills that just gets bigger every time the mail man gets to my house?
sunday is now my favorite day of the week. friday can kiss my butt, sunday has no mail delivery.

Originally Posted by FluteMaker

after i found out how much the copaxone costs i started looking for alternatives. i already knew that no med was going to 'cure' MS for me.i know that no med is going to work for everyone, or even to the same extent for any two people.

i still havent bought it hook line and sinker, but i am responding to it well. im nowhere near 100% yet but im alot better than when i left the hospital.

Originally Posted by FluteMaker

leaving the hospital i was on a walker and it took almost an hour to get from my room on the fourth floor to the front doors. today, im walking unasisted. i still have some remnants of my week in the hospital, like parts of my face are still numb. theres still some tingle to my left arm and hand(good thing im right handed). my left side and chest still have some altered sensation but all in all im doing much better than i was in july.we'll see where things go from here. i hope they continue in the same direction and even pick up pace.

Originally Posted by FluteMaker

one thing that kills me about the LDN is that the idea was around when my mother was alive.her MS was a progressive type, so it may not have done much for the damage done or extended her life. but it may have been able to improve the quality of what life she had.

Originally Posted by FluteMaker

i do have alot to be thankfull for. dont get me wrong. but i feel like im being penalized or something. when my mother had MS i put everthing in my life on hold to take care of her. i was there night and day for 13 years before she died of MS related complications. we lost the condo ,of which i was part owner, when the long term disability ran out and we couldnt afford the mortgage.i lost a couple jobs so someone could be there with her during the day.
and i really didnt mind all that much. the way i saw it i had a real unique opportunity to repay her for things she had done for me.
the diaper changes, the sleepless nights, the trips to pick me up at the police station at 3 am, the time i spent in detox and she held my hair back when i threw up. all the little things that added up to the huge thing called raising a child. and i had a chance to repay her and say thanks. but as far as MS goes, i did my bit. ive done my time. and now to have it myself?
and seeing doors close to me because i cant afford to keep them open feels like even more of a penalty than it did before.
things like my wife not being able to upgrade for her work because we need the money for my medical bills just kills me.

Originally Posted by FluteMaker

so, im stuck in my own poor little ole me funk for now. ive been taking a mental inventory of all the things people have been telling me that sound so much more stupid to me since ive been diagnosed. thinking on the times ive said them myself and vowing to never say them again. the' but you look so good' comments and such. i think ill just leave it at 'how ya holding up?' from now on and save the plattetudes.

Originally Posted by Gazelle

Ranting's good for your soul. It really is. You get it off your chest and don't keep it bottled up and let it eat at you inside. Plus, knowing you're depressed is a good thing. Crazy, huh, that saying knowing it's good, but if you don't know it how the heck do you FIGHT it?



My mom drank herself into spinocerebeller atrophy. I think she's in a wheelchair now pretty much all the time. Her speech is really hard to understand too, at least it was the last time I heard her which was a few months ago at her cousin's funeral. They thought she had MS for 12 years before determing it was spinocerebeller atrophy.

My mom had a choice--give up drinking and lead a "normal life" or drink. She never had a problem, according to her, so she kept drinking. And she ended up with a disease that's similar to MS which she could have prevented. Your mom had no choice. She had MS. I'm angry at my mom that she never had the guts to admit she had a problem and drank herself into a worse problem than just plain old alcoholism. Nevertheless, both our moms suffer(ed) from a disease and the complications of that disease.



Ok, you're right. YOu didn't sign up for this sucky thing. None of us did. And yeah, I think that all of us have thought about everything we can't do, won't be able to do, or might not be able to do and that's all part of the head game this disease plays with us. Until you realize that it IS a disease and you still CAN do almost everything that you wanted to do, it's just that you may not be able to do it as WELL as you wanted or as frequently as you wanted or at the same level as you imagined.

My husband had me an invalid when it was first said that it was probably MS. We were going to have to move out of our house, which had 3 floors and a basement, because (in his words) "you won't be able to do steps so what's the sense in living in a 3 floor house. We need to get a ranch house." Oh..... that made me feel SO MUCH better. Right. I'm in the middle of an exacerbation from hell and you're telling me that my body's gonna suck and I'm going to be a cripple. Wow, talk about a mind #^(%!!!!! I am not a big fan of ranch houses. Never have been. In MY head, a house has a basement, a first floor, and a 2nd floor.

My husband also decided one day that because I had been fine when I sat down to watch a concert at the local fairgrounds during the annual fair and I wasn't great when I got up, that I couldn't walk around the fair with everyone. It was near the end of the fair and that was the first time I'd been there. I was ****** off at him. He treated me as if I was a 2 year old being told that I wasn't allowed to do something--that I had no choice in the matter. And I told him off in front of everyone and stormed off home. My poor son got to see me collapse in tears when I entered the house and just was stunned when I yelled at him, "I'm NOT a cripple. I'm NOT going to be told I CAN'T do things by someone else. I am NOT a cripple."

It was after all that stuff, which happened pretty close together, that I decided that it didn't matter. I was going to do the things I had wanted to do in my life--that I wasn't going to let this stupid disease get to me and destroy ME and my dreams. It still plays with my head, but I have a whole pile of anger at this thing that trys to make me feel cruddy or question my ability and I put it to good use to show it that I'm not going to let it control me.



Sure you needed a horse. That was a DREAM of yours. It was a dream of mine too. I dreamed of having my own horse since I was a little kid. And I told my husband that I was going to get one before I was 30. When I was 29, we could have managed for me to have a horse. But he told me no, that I couldn't have a horse, that we "couldn't afford a horse." I'm 46. I've never had a horse. I'm angry about that. It's still a dream. And you know what? I'm going to get one sometime. Because it's what I want and what I enjoy. So don't you DARE give that idea up.

You can come up with a different way of doing it. Why not rent one for a while? It's not quite the same, but it would be "your" horse. Or consider co-ownership with someone. Think creatively. How about looking for an equine therapy place and assisting there so you can be around horses?

Oh.... the honeymoon.... the one you never had. Yep, me too. Exactly the same way only MY honeymoon would have been my 20th wedding anniversary present and we were going to stay in Ireland for 2 weeks. We'd talked about it. Only I went to school for 3 years and when I graduated we were on our 18th wedding anniversary year. My husband told me right at graduation that we weren't going to be able to afford to go to Ireland because of my student loans. Bam! Shot my dream and our plans down. We'd never had a honeymoon...... and we still haven't.

So maybe it's not this year for you and your wife. Maybe it won't be next year. But it's an EXPENSIVE time to go to Europe/England/Scotland/Wales/Ireland. Trust me. I was just in Wales for a week. It's mindbogglingly expensive right now. Put a little bit aside regularly for your trip and then go on a special anniversary--10th, 15th, 20th.... renew your vows and then go when you can afford to go.

That dream--the one of going to Ireland where I've always wanted to go--was the one that hurt the most. I thought to myself that I wasn't going to get there. Or that if I was, I was going there in a wheelchair or a walker. That was in 2003, during the exacerbation from hell, and my head had me all disabled and dysfunctional physically. After the fairgrounds/ranch home incidents, I said it didn't matter if I was confined to a bed I was going to Ireland and going to see it that way. But I'm not stubborn at all.

Plan it. Figure out how you can do it on the cheap but do it the right way and then go when it isn't almost $2 U.S. dollars to every 1 British Pound Sterling.



I think that there may still be some other options for you, but I truthfully can't think of them right now. Someone else may be able to give you some other things to look into. Don't stop looking for a solution to this problem.



Did you have a lawyer for your disability case or did you do it yourself? Did you go to a hearing before an administrative law judge (ALJ) or were you just denied after you made your application? If you didn't have a lawyer, you should get one. There's a limit to the amount of fee that a lawyer can get for helping you. Feel free to PM me and let me know where you're located. I may be able to help you find a qualified attorney who deals with disability cases all the time to assist you. But you'll have to PM me.



No, she didn't ask for this either but she's still there. And she did sign up for better or for worse. Obviously she cares for you or she wouldn't be there by your side. You gave her an out. So would you be there for her if it was HER with the problem? I'm thinking yes. Because it sounds like you love your wife. And that's what couples do--notice I said "couples." When you're together--as one person--you help the other person when they're being kicked even if you're being kicked a bit too.

You don't have to thank her every day for being there for you, just let her know that her love and support means a lot to you. It doesn't have to be in words, it can be in your look at her or in your touch, but hang it all, let her know. And be open and honest about your feelings with her, especially about how the stupid MonSter makes you feel. If she understands your limitations or how you're feeling, she can ensure too that you're getting the most out of life with her and that you're both being fulfilled in the relationship.



I'm sure. It's a learning process for everyone. There's a curve. Some people make the leap and others don't. You'll learn who does and who doesn't. And you'll adapt.

There are some you can educate about this disease and others don't really want to know. Figure out who you can educate and who you can't. That'll help. And be willing to talk to them about what it is and what it can do to you and what it IS doing to you (if they ask you that). Much of the not knowing part is because they don't understand the disease and you don't look any different.

Why not tell them when they say, "but you look so good," that "that's part of the problem--you can't SEE this disease in most people."



ROFLMAO GREAT comeback. I'm proud of you. The first time I got told off by someone I was stunned. But the message board I had been on had a discussion about comebacks for jackasses like that. So when my husband and I parked in the handicapped parking cuz I was having a terrible time that day and it was really hot and we were going to be outside in the sun for a couple of hourse and the lady stopped her car and yelled out her window, "Oh YEAH, you two look REALLY handicapped." I yelled back at her, "Not all handicaps are as visible as YOURS" and muttered "biotch" under my breath.

I got challenged by another person with a handicapped placard. He told me that I shouldn't use someone else's placard to park in a handicapped space. I told him I knew that. He apparently thought that I didn't get it. So he told me that again--that it was against the law to use someone's handicapped placard when they weren't with me. I told him I knew that too. So he still thought I didn't get it. And the next time he said something to me I turned to him and said (I was at an ATM), "Look, I told you I know about handicapped placards. You don't see me asking for your little blue card that says you're authorized to have one. But since you're being so insistent, let me show you mine. Because I don't have to justify myself to anyone, but you're not letting this go and I'm done being polite about it." That's when he backpedaled and told me that he didn't need to see it.

But the next time it happens to me when someone challenges me who doesn't have the authority and who says that I don't look handicapped, I'm goign to ask them to give me their business card so that I can have my doctor contact them as a consult because obviously THEIR medical degree is BETTER than MY doc's medical degree. And then I'm going to walk away.

Jerks are everywhere. You have the placard. It's a blow to your psyche to have it, but you have it nevertheless. Sure, it's a real visible admission that there's something WRONG with you. At least that's the way I took MINE. And I cried when I asked the doc's office to sign the paperwork because I didn't want to admit that there was something wrong with me to require me to need it. But I knew in my heart that I did need it. Use it if you need it. And remember: You don't have to defend the use of it to ANYONE or dignify their remarks. You have to be authorized by your state to use it and have to justify it only to certain people if you're challenged, the police being one of those people.




Well, MS certainly hasn't affected your sense of humor!
How come you're not telling them exactly THAT when you talk to them? It'll shut them up or they'll burst out laughing and you can move on from there. You don't have to be a martyr here. You only are required to be a human being.




With MS a twisted sense of humor is a bonus. It keeps your perspective. Heck, I used to be fascinated to see what my finger was doing when it was tremoring. It had a life of it's own--something I was struggling with and I sort of admired it for that.

When you make friends with MS there's a never ending source of amusement. Oh it's fun going out with a bunch of people with cognitive problems. At least with a group you can (1) remember where it is that you're going, (2) what you're supposed to do when you get there, and (3) how to GET to where you're going. Life is fun. You also can take all the time you like when you're word searching or lose your train of thought. Your friends will search with you for the word (or supply it if their synapses are firing) or go off on your tangent and forget that you had another purpose to your beginning part of your sentence(s).

Yep, there are good and funny things about having MS. I wouldn't give my MS, diseased, disabled, gimpy friends for anything. I love 'em to death.

But there's nothing funny about the bills. Although I DO like your Sunday rationale a LOT. If it's too much, you may need to consider bankruptcy. Not a great option, but it's a possibility. I"m serious. If it's bad, talk to an attorney about the possibility of a bankruptcy. It may not mean that you need to do it, but at least you'll have some idea of whether or not it would be a good option for you. And that, in itself, is another "admission of failure" like getting a handicapped placard. Being able to exist and pay your bills is a thing we all sort of take for granted--I can work, I can provide $$, I am a good person because of that. Things happen. And when you have major bills due to an unexpected and (key words here) UNPREVENTABLE problem (not that you were a person who went out and charged everything to the hilt because you just did), it happens and you don't have to let it ruin your life. Maybe what you need is a payment plan you CAN afford to keep your life going.

I grew up in an affluent family, so I've been told. But when I got pregnant and had my daughter, my H and I were working 3 jobs each just to pay bills and had only $5 left at the end of the week. That was 1982. We were poor. One financial crisis--a large automobile repair bill-would have sent us over the edge. I went to food giveaways. I was on WIC. I ate beans, rice, hot dogs, macaroni and cheese....... I extended food with ALL those things. And every time I eat those things, I think of those days when we were so friggin poor. We got through, but it was really tough. So I know what it's like to struggle and I've been on disabilty for 16 months where we ate through our savings and I lost my job...........

I hear you. I really do. And I understand. Sunday was my favorite day too during those times.



Nothing wrong with alternatives and it's really GOOD to be skeptical. Buying into things without researching them isn't beneficial for you. You're NOT a sucker. Information is a great thing--it helps you make good decisions and it helps you be a better patient. Keep it up. And if you're liking LDN, great. Have you talked to your doc about it? If not, do that. You want your doc on board with your decision to go alternative. And if your doc won't, then maybe you need to find another doc who's good and is willing to work with you to do that.



Yeah, patience is a virtue. But I sure am NEVER ready to be patient when I have something that's wrong with me physically and really disturbing me. I want it gone and NOW. But I've learned. And I learned the hard way.

In '94 I was in a car accident and disabled for 16 months. I spent 9 of those months in PT 3 days a week 2 1/2 hours a day. 9 months..... it was a long time. I had to learn to reuse my left arm all over again. At first I was so depressed. I'd tied my whole being in my ability to work. And I was too used to being independent and there I was--dependent on people. Grrrrr......

But I had to give that up. I had to take even little things--like taking a shower by myself (instead of my husband washing my body because I couldn't)--as a triumph. It was demeaning to consider being able to take the top off a bottle of soda as a triumph, but I DID. Hell, it was an IMPROVEMENT. I couldn't do it before and then, even if it took me 2 hours to do it, I could pour myself a glass of something I really WANTED to drink.

So I learned that even little improvements were great things and would let me look back, see where I HAD been, and how far I had come. It taught me to appreciate the bugs that carried things over seemingly vast stretches of pavement, blue skies, pretty flowers, days without pain, family, and friends. It made me take a good hard look at myself and come to grips with all my vulnerabilities. It made me reassess my life. It made me realize that there was more to life than work.

I'm a realist. I realize bills have to get paid and life is more than pretty things, but it's a real process to be suddenly unable to do things. You are going through that right now.

YOu need to be KIND to yourself. You're grieving. YOu've lost a life you had built in your head. Ok, but think this--if YOU built that life in your head YOU can rebuild it. Just give yourself time to adjust to this.

MS is like living on a roller coaster. You're up one minute, you're down the next, but you're actually blindfolded and you don't know what is coming--up or down. Eventually you get used to that feeling. Sure, it'll still get you down and you'll have your good or great days, but that's ok. You're entitled. And it's ok to have the occasional pity party for yourself once you've come to grips about all this. But in the meantime, let it loose and just vent the feelings. We've been there.

We DO understand.

Make friends on the MS board. It's amazingly helpful to have people who DO get it because when others in your life can't figure out why you can't feel your lip and how that affects you, we can. There's bound to be someone who can identify with that--honestly, openly, and with acceptance.



don't go there. Don't. You can't change the past. And things were different when your mom was alive. And they were probably different when she was diagnosed. Do NOT beat yourself up. THAT is what you're doing. As Cher said to Nicholas Cage right when she slapped him, "SNAP OUT OF IT!"

Maybe LDN can improve the quality of YOUR life. And for that your mom would be happy. But you can't play the "what if" game. It never leads down the right alleys. So don't go there......




Sure. You'd rather fix things than be fixed. And yeah, it does feel like you are being punished for some thing that you've done--if only someone would TELL you what that was! That's honest. That's real. And I DO understand that. Because some days I think to myself, I'm not that terrible a person. I'm so TIRED of all this stuff happening. I just want to be NORMAL and live a NORMAL life.

It doesn't work that way. No matter how good you've been, no matter how much you try, things happen.

Your mom, I'm sure, appreciated the things you did for her. You did what you could and you did it with love. And she, as a mom, did the things she did for you out of love. I think that love is a great and wonderful gift. You can take away possessions, you can take away "things," but no one can take away love from you. You will always have the memory of your mom's love for you. And that's a wonderful source of "good feelings" for you to be able to run to to keep your inner sense of peace going. And your wife loves you too. Giving back love is a gift too--probably the greatest gift you can give someone besides forgiveness. And all of them take work.

I will always love my children. I don't always have to like them, but I will always love them.

Bad things happen. They just do. You did not cause this disease. It just happened. And as a result, your life is harder. Yep, it sucks. But you WILL get through it. You'll do it one way or another. My dad always said, "if you ignore something long enough it will go away. " True. Think about it..... no matter how long you pile up bills and you ignore paying them, eventually you'll die and eventually you won't have to feel the pressure of having them looming over your head. Ok, maybe that's a perverse example, but it's true--you can ignore things long enough and they'll go away. Bad things happen. You just have to choose how YOU will react to them and how YOU will let them affect you.

Choices. We all have choices. You didn't have a choice about the MS, but you DO have a choice about whether you will let its consequences affect you adversely or whether you will hoist yourself up and face things and get through them with fortitude.

Life ain't for wimps, mister! My grandmother who died at 95 used to tell me that it sucked growing old and that it wasn't for wimps. Yep, neither is life. One of the things that cracked me up when she was taken into the ER because she was having respiratory problems and was unresponsive was that when they took the mask off her from the machine that was helping her breathe, she stated in a very LOUD voice "Water water everywhere and not a drop to drink." Poor woman was thirsty and they wouldn't give her anything to drink. But she let them know her displeasure at it in a pretty friggin humorous way. Eventually she got a drink. But she died during that hospital admission. At least I have THAT to crack up about. And man, I want to go out that way too. Because life sucks but you get to decide if you're gonna face it with humor or whine about being thirsty.



Be in a funk. You're entitled. Think about this--you've been diagnosed just a little over a month now. But what changed? Only that you have a diagnosis. You're still you.

Yeah, we say things we don't really mean or we ask things and we're not really interested. People do that. You're still going to have to say things you don't entirely mean or ask them, but you can change your reaction and actions to suit your altered state of perception. That's ok. That's good.

You're going to be fine. You will. But give yourself time to adjust to this. You HAVE to do that.

Live LIFE. It's there. It's sitting right there..... at the tips of your numb@ssed fingers or right at the tips of your numb@ssed toes. Sit there with the woman you love, who loves you, and work through life together to get through this. There's strength in numbers.

So yeah, here's a platitude: hang in there. And I do mean that--because some days all I do is hang on to one good moment in the day so I can get to sleep and hope that tomorrow will be a better day.

Yeah, so you look so good. DAng.... take that as a compliment. Would you rather they say, "Hey, bud, you look like crap!" Well, yeah, that's honest, but I don't want to be told that unless I'm sick. No. I've got a disease. Um.... there's a difference. I can choose to HAVE a disease or I can choose to BE sick. It's an attitude difference. I can FEEL like crap and look great or I can feel like crap and look like crap. Sometimes I need that honesty--like when I have the flu or don't know that I have overexerted myself. Other times I don't want to hear that because I don't want to BE sick and I don't want to HAVE MS.

And denial of being afflicted with MS is a good thing occasionally. I've gone on vacations from MS. I've just said that, "Nope. I am NOT having MS this week. Nope. Ain't happening." And I've lived the week without MS. Sure, I've had some bizarre feelings during that week--like wondering why I can't feel my feet--but it's sure not from MS. It's most likely because I was sitting too long and I put them "to sleep." Uh huh..... denial is a great thing.

Don't BE the disease. Be YOU.

And yes, this WAS all about the MS.

(see, I told you I was mouthy)