i guess this is as good a forum for this thread as any. i have MS so it could belong there.this is a rant about being depressed, so it could belong there too.but it doesnt have to do with either directly so i dropped it here.
im only 39 years old. ive been diagnosed with relapsing/remitting multiple sclerosis. making me a second generation MSer. MS is the same illness my mother had,and eventually died from complications of. the general thought of MS is that its an auto immune disease. im starting to not like that word.disease.
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. 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.
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.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.
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.
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. 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'.
people keep telling me to 'keep a stiff upper lip'. i would if i could feel my upper lip. 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.
after i found out how much the copaxone costs i started looking for alternatives. not like that crystal twinkie down in florida with the book 'i cured my MS ,you can too' or somesuch title. id have more books than the local library if i bought every one of those books. theres another guy, with videos on youtube who says MS isnt a disease at all. its a poorly aligned spine messing with nerves. thats one more nut job for the pile. im pretty sure the huge azz liesion in my brain has very little to do with the alignment of my spine.
i saw another one that recomended a fish diet.owing to the idea that all minerals and natural elements are present in trace amounts in the ocean, theyre also in the fish. they believe that MS is due to our lack of those elements and minerals. so if we ate the fish we would ingest the minerals too and thus quash our MS. nice idea, but not too likely. i saw the LDN pages too. thats what im on. 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. but the anecdotal track record was enough to pique my interest. it was fantastic enough to want to know more.but at the same time sensational enough to not buy it hook line and sinker. 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.
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.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.
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.

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.