mwade12
02-24-2001, 03:44 PM
I was diagnosed with MS in 1992 with the right side of my body going numb. Since that time I have had no attacks. My Neurologist now says I have a 60% to 70% chance of having another attack in the next two years and wants me to go on copaxone. My internest agrees with him.
Any thoughts out there?
Any thoughts out there?
Sponsor
andreamc
02-25-2001, 02:18 AM
No attacks since 1992, and he wants you to start taking medicine now? What has helped you out thus far? I would be very leary about this, because the side effects to these shots are sometimes flu-like symptoms, which might cause you to have an attack. It is your decision, but if I was doing just fine without it, why take the chance of making it happen? I'm glad you have been good for the past 10 years.
MomBook
03-06-2001, 01:01 PM
I was dx in 1988 and did very well for 9 years. My Dr had wanted me to start one of the ABC meds but I never thought I would get "bad" so I declined to start them. Then came my BIG flair. I have a lot of damage that I didn't have before. I then knew I had to do something to try and slow the MS down. I picked copaxone because it sounded the easiest to do. It is a shot everyday but just under the skin NOT in the muscle. There is also an autoinjector to make the shots easier. The ONLY side effects I have had is a red itchy bump at the injection site. There are NO flu like symptoms with copaxone. It is to slow the MS and right now that is our best hope. I just wish I had started sooner BEFORE my last flair had left a lot of damage :-(
mwade12
03-07-2001, 06:51 PM
MomBook, Thanks for your insight. I think I am going to follow my doctors advise and start the copaxone.
bain
06-08-2001, 04:14 PM
Hi, I was just diagnosed in the fall when
I lost part of my vision. Even though I'd
been tested for 8 years because of tingling,
twitches, constant balance problems, trigeminal neuralgia. Finally a spinal tap
showed what 3 MRIs in 8 years did not. My
vision has been "out" for 9 months now,
is better, but hardly 100%.
I never am without balance problems, fuzzy
thinking, and "buzzing" in my head/body for
any length of time, so I don't understand
"flares" and "exacerbations". I don't ever have,and haven't had, for years, any
long period of several weeks or anything without those problems. The doctor says
the damage has been done and I probably
wont be without these problems. Only occasionally is it so bad that I can't
walk. I know what to do to avoid that.
I was an athlete, with a daily running
or other workout, and I cannot, at ALL,
do that, anymore. Can only ever take very
short walks when it's nice and overcast
and cool (even then, I don't feel so great
after)
If I get too hot (I'm in texas where it's, like, 1000 degrees some days) and I get out in it to run errands, I will not be able to think or do anything but lie down, and my eye goes almost completely dark.
I have to take care not to get too rushed, too stressed, too tired, too upset, too HOT,
etc. I don't take showers anymore because
i fall all the time.
I've been coping on my own for so long,
using Valium to stop the worst balance/thinking problems, and just
hiding away from any kind of stress or
pressure, thinking I was losing my mind.
(I had a drug-addicted neurologist in the
beginning, who dismissed me as a wacko,
so I was afraid to pursue this until my
eye went blind)
ANYway, long story short: I seem to
be getting worse in that heat is bothering
me more, and I have more falling/dropping
incidents, and more tingling and tightness
in my back and legs. (I also have Fibromyalgia)
The doctor really really is leaning on me
to start Copaxone. I really fear side effects
that will only add to my current problems.
Will Copaxone help immediately with heat
tolerance and balance problems?
I have
no problem with injections, because I give
myself allergy shots. But I really am
bugged by this "stuff" that Copaxone is
made of, and will it show results right
away? I'll have to pay $35.00 insurance
co-pay (which I can barely afford, since
I almost have to take monthly unpaid leave, when I'm not doing well)
I'm really angry that I'm not able to
be the runner and fit person I used to
be, and I'm wondering if this is forever,
or if this is a LOOOONNNNNG exacerbation!
Do you all have problems that never really
go away? Or that can occur daily, if
you're not careful? I don't see that
I ever have any kind of remission.
The doctor says it's R-RMS, but...it just
never remits.
I'm rambling, but I need to think out
loud and get feedback on Copaxone. I definitely know I will NOT take chemo or
steroid therapy, but the doctor says he
really feels the Copaxone will be just the
thing.
Big decisions, here. I am single and
my only support in a job with good benefits
but yucky pay -- I basically live month to
month. (thank god my apartments pays my
elec bill, I keep it 65 at home, the only
time I feel "okay")
any help is welcome, my address off-board
is enjay54@yahoo.com
cheers --
bain
I lost part of my vision. Even though I'd
been tested for 8 years because of tingling,
twitches, constant balance problems, trigeminal neuralgia. Finally a spinal tap
showed what 3 MRIs in 8 years did not. My
vision has been "out" for 9 months now,
is better, but hardly 100%.
I never am without balance problems, fuzzy
thinking, and "buzzing" in my head/body for
any length of time, so I don't understand
"flares" and "exacerbations". I don't ever have,and haven't had, for years, any
long period of several weeks or anything without those problems. The doctor says
the damage has been done and I probably
wont be without these problems. Only occasionally is it so bad that I can't
walk. I know what to do to avoid that.
I was an athlete, with a daily running
or other workout, and I cannot, at ALL,
do that, anymore. Can only ever take very
short walks when it's nice and overcast
and cool (even then, I don't feel so great
after)
If I get too hot (I'm in texas where it's, like, 1000 degrees some days) and I get out in it to run errands, I will not be able to think or do anything but lie down, and my eye goes almost completely dark.
I have to take care not to get too rushed, too stressed, too tired, too upset, too HOT,
etc. I don't take showers anymore because
i fall all the time.
I've been coping on my own for so long,
using Valium to stop the worst balance/thinking problems, and just
hiding away from any kind of stress or
pressure, thinking I was losing my mind.
(I had a drug-addicted neurologist in the
beginning, who dismissed me as a wacko,
so I was afraid to pursue this until my
eye went blind)
ANYway, long story short: I seem to
be getting worse in that heat is bothering
me more, and I have more falling/dropping
incidents, and more tingling and tightness
in my back and legs. (I also have Fibromyalgia)
The doctor really really is leaning on me
to start Copaxone. I really fear side effects
that will only add to my current problems.
Will Copaxone help immediately with heat
tolerance and balance problems?
I have
no problem with injections, because I give
myself allergy shots. But I really am
bugged by this "stuff" that Copaxone is
made of, and will it show results right
away? I'll have to pay $35.00 insurance
co-pay (which I can barely afford, since
I almost have to take monthly unpaid leave, when I'm not doing well)
I'm really angry that I'm not able to
be the runner and fit person I used to
be, and I'm wondering if this is forever,
or if this is a LOOOONNNNNG exacerbation!
Do you all have problems that never really
go away? Or that can occur daily, if
you're not careful? I don't see that
I ever have any kind of remission.
The doctor says it's R-RMS, but...it just
never remits.
I'm rambling, but I need to think out
loud and get feedback on Copaxone. I definitely know I will NOT take chemo or
steroid therapy, but the doctor says he
really feels the Copaxone will be just the
thing.
Big decisions, here. I am single and
my only support in a job with good benefits
but yucky pay -- I basically live month to
month. (thank god my apartments pays my
elec bill, I keep it 65 at home, the only
time I feel "okay")
any help is welcome, my address off-board
is enjay54@yahoo.com
cheers --
bain
General_Confusion
06-08-2001, 05:09 PM
Howdy all, especially mwade12 and bain. As far as Copaxone goes, I definitely think you both should seriously consider taking it! I have been on all of the ABC drugs, and definitely like the Copaxone the best. As an aside, the autoject rocks! Anyhow, A&B were definitely a lot harder for me. Betaseron caused terribly flu like symptoms that were worse than the MS! I stopped taking it after about two months. I was on Avonex for about two years. It was always difficult (mentally) to inject myself with that long needle, and I had flu like symptoms that diminished over the course of my therapy. I was able to combat those symptoms with naproxen (or Tylenol, or ibuprofen) pretty effectively, but it still wasn't 100%. The Copaxone is (for me) the best of all. No flu like symptoms and an autoject to make the injections go easier. The only side effects that I've experienced are injection site soreness and itching (a little over 50% of the time) and I had a little episode of chest tightness that was not severe. I called my doc's nurse to report this and she told me to halve the dosage for two days, then go back to the full dose. I have not had any more chest tightness since then.
Copaxone is not an interferon like Av & BS, and does not cause the flu like symptoms. In any case, talk to your docs about what side effects you may experience. I think you'll find that Copaxone is the ABC drug that is generally tolerated best.
Bain, have you looked into getting one of those vests that help keep you body cool? They can help a lot with heat associated side effects since they keep the spine (a major nerve impulse highway) cool, thereby reducing the number of transmission errors that you get when you're hot.
Also you wrote "Will Copaxone help immediately with heat tolerance and balance problems?" I'd have to say that I don't think so. As I understand it, it is a long term treatment from which you will not see immediate results. The way it works is that it blocks the receptors in your T-cells that tell the cell to go clean up myelin (nerve sheath) particles. What is wrong with us is that our T-cells go nuts when they detect myelin particles, and start trying to clean up the myelin that is still attached to our nerves! This causes, say it all together now, "demyelination"! That is a bad thing, and causes your symptoms to get worse. Anyhow, it won't help you immediately as it takes a while for the Copaxone to shut off the myelin cleaning function of your T-cells. There are a lot of them to get to, so it's not an instant gratification thing.
If you want to try to stop your symptoms now, I think you should reconsider about chemo or steroids. They can help calm things down before the Copaxone gets a chance to work.
Let's see what else... Oh yes, symptoms that don't go away. Yes, I have some of those, but I definitely do have distinct flares where I get stuff that goes away with time and/or treatment. I also have daily stuff that comes and goes dependant on heat, stress, fatigue, etc...
I'm sorry to hear that you're having difficulties financially. Something to look into would be a medical savings account. These are pre-tax (both income and payroll) funds that you put into an account that you can use for medical expenses that are not covered by insurance. Unfortunately, this is a use it or lose it situation for each calendar year. I do not know whether you can get one individually, or if it is only through group programs (like an employer). Also, medical expenses that you pay out of pocket can be deducted when you file your taxes. This doesn't avoid payroll taxes, but will reduce your income tax liability.
Okay, long enough for you? I hope you found at least some of this useful. Take care,
Jason
[This message has been edited by General_Confusion (edited 06-08-2001).]
Copaxone is not an interferon like Av & BS, and does not cause the flu like symptoms. In any case, talk to your docs about what side effects you may experience. I think you'll find that Copaxone is the ABC drug that is generally tolerated best.
Bain, have you looked into getting one of those vests that help keep you body cool? They can help a lot with heat associated side effects since they keep the spine (a major nerve impulse highway) cool, thereby reducing the number of transmission errors that you get when you're hot.
Also you wrote "Will Copaxone help immediately with heat tolerance and balance problems?" I'd have to say that I don't think so. As I understand it, it is a long term treatment from which you will not see immediate results. The way it works is that it blocks the receptors in your T-cells that tell the cell to go clean up myelin (nerve sheath) particles. What is wrong with us is that our T-cells go nuts when they detect myelin particles, and start trying to clean up the myelin that is still attached to our nerves! This causes, say it all together now, "demyelination"! That is a bad thing, and causes your symptoms to get worse. Anyhow, it won't help you immediately as it takes a while for the Copaxone to shut off the myelin cleaning function of your T-cells. There are a lot of them to get to, so it's not an instant gratification thing.
If you want to try to stop your symptoms now, I think you should reconsider about chemo or steroids. They can help calm things down before the Copaxone gets a chance to work.
Let's see what else... Oh yes, symptoms that don't go away. Yes, I have some of those, but I definitely do have distinct flares where I get stuff that goes away with time and/or treatment. I also have daily stuff that comes and goes dependant on heat, stress, fatigue, etc...
I'm sorry to hear that you're having difficulties financially. Something to look into would be a medical savings account. These are pre-tax (both income and payroll) funds that you put into an account that you can use for medical expenses that are not covered by insurance. Unfortunately, this is a use it or lose it situation for each calendar year. I do not know whether you can get one individually, or if it is only through group programs (like an employer). Also, medical expenses that you pay out of pocket can be deducted when you file your taxes. This doesn't avoid payroll taxes, but will reduce your income tax liability.
Okay, long enough for you? I hope you found at least some of this useful. Take care,
Jason
[This message has been edited by General_Confusion (edited 06-08-2001).]
xiolablue
06-09-2001, 11:30 AM
Bain-
you indicated that you were a runner before the symptoms got too bad. I want to suggest you try swimming to stay physically fit. My doctor recommeded for me since I got sooooo exhausted just doing a quick walk around my neighborhood. The best thing is to find a pool that regulates its temperatures on the cool side and swim laps. I have no problems with the fatigue of walking because the water keeps my core body temp. down.
It's great cardio and you'll feel lots better knowing that you are still keeping your body in shape even though this disease may have thrown you for a loop.
best of luck to you!
you indicated that you were a runner before the symptoms got too bad. I want to suggest you try swimming to stay physically fit. My doctor recommeded for me since I got sooooo exhausted just doing a quick walk around my neighborhood. The best thing is to find a pool that regulates its temperatures on the cool side and swim laps. I have no problems with the fatigue of walking because the water keeps my core body temp. down.
It's great cardio and you'll feel lots better knowing that you are still keeping your body in shape even though this disease may have thrown you for a loop.
best of luck to you!
bain
06-11-2001, 12:04 PM
Thank you so much for the replies!
I was leaning toward starting the Copaxone,
but read somewhere today on a board about
people suffering from ataxia during the
course of treatment. I have enough problems
with balance and controlling my legs,
without adding to it, so that unnerves me
(so to speak)
As far as the swimming goes, I asked the
doc, and in this small city, it's hard
to find a pool that is sufficiently cool.
My mother is actually a water aerobics
instructor at a rehab health facility here,
and even though their water is not heated
much, the atmosphere, with glass roof
and beating sun, is miserable for me. I
tried that.
I need to start Yoga, I think.
I think whatever exacerbations I have must
be very mild. Or was it an flare, when my
eye went blind? (it's nearly back to normal, I don't have that smudge in the
middle, but it still fades out when I'm
hot or exert too much.)
My problems are just daily
tingling, numbness, the eye problem in one eye, BALANCE, stiffness, and the weird buzzing/throbbing/confusion in my head (and
the electric-shock in my neck/spine) (valium stops that almost immediately) And digestive problems, etc.
But if I don't do too much in one day,
and stay in when it's hot, I can sort of
manage. I'm not sure I'm bad enough of
a case to even take Copaxone. Over the
years, I've progressively, but very
gradually, gotten worse, and cut out my
workouts completely, and that helps me
function. I just want to go for a run!
And it's just impossible to do, I can't walk
in a straight line, or think, if I even
tried.
Complicating matters is the fact that
i also have Fibromyalgia, which requires
some working out and is worse when I
lie around or get too cold. It's a delicate
balancing act...
thanks for the tips, will investigate
this cool vest thing. I have a thing
from Sharper Image, a bulky thing that
goes around your neck and you add water
and the fan blows over it. Kinda robotic
looking, not exactly for the office!
bain
I was leaning toward starting the Copaxone,
but read somewhere today on a board about
people suffering from ataxia during the
course of treatment. I have enough problems
with balance and controlling my legs,
without adding to it, so that unnerves me
(so to speak)
As far as the swimming goes, I asked the
doc, and in this small city, it's hard
to find a pool that is sufficiently cool.
My mother is actually a water aerobics
instructor at a rehab health facility here,
and even though their water is not heated
much, the atmosphere, with glass roof
and beating sun, is miserable for me. I
tried that.
I need to start Yoga, I think.
I think whatever exacerbations I have must
be very mild. Or was it an flare, when my
eye went blind? (it's nearly back to normal, I don't have that smudge in the
middle, but it still fades out when I'm
hot or exert too much.)
My problems are just daily
tingling, numbness, the eye problem in one eye, BALANCE, stiffness, and the weird buzzing/throbbing/confusion in my head (and
the electric-shock in my neck/spine) (valium stops that almost immediately) And digestive problems, etc.
But if I don't do too much in one day,
and stay in when it's hot, I can sort of
manage. I'm not sure I'm bad enough of
a case to even take Copaxone. Over the
years, I've progressively, but very
gradually, gotten worse, and cut out my
workouts completely, and that helps me
function. I just want to go for a run!
And it's just impossible to do, I can't walk
in a straight line, or think, if I even
tried.
Complicating matters is the fact that
i also have Fibromyalgia, which requires
some working out and is worse when I
lie around or get too cold. It's a delicate
balancing act...
thanks for the tips, will investigate
this cool vest thing. I have a thing
from Sharper Image, a bulky thing that
goes around your neck and you add water
and the fan blows over it. Kinda robotic
looking, not exactly for the office!
bain
GinniBoBinni
06-11-2001, 02:12 PM
Your posting has really hit home for me. I have always been athletic, very active, and in good shape. I had one exacerbation in 1997 that left me unable to walk for nearly four months. I went to a chiropractor for it because I thought I'd hurt myself running. He got me into lots of vitamins and it eventually cleared up. I never thought twice about it.
Then, in December 2000, with an 8 month old daughter, the symptoms returned and I was diagnosed by a neurologist. It wasn't as bad, but the symptoms still have not left completely, still have the tingling, spasms, electric shock in spine and intolerance of heat.
I try to work out every day at lunch, and sometimes can hardly do but a few minutes on the treadmill. It simply terrifies me. I don't know how everyone else deals with the fear of losing mobility or ability. I am having a really hard time with it. And because I am mostly "fine", my friends and husband don't understand. When I am fatigued, I am still expected to do all that I usually do, work my job, care for my 1 year old, clean the house, etc. etc.
I am on Betaseron and have been for about 2 months now. I don't have flu-like symptoms often, but do have site reactions, and have not had any clear up of symptoms with it. I will consider copaxone if this doesn't seem to be helping.
I would recommend using some treatment though, as you don't want the damage from this disease to make your later life unbearable. The treatments have been clinically proven to help in that area, even if they don't show many results now.
If you ever want to talk, email me: ginnibobinni@yahoo.com
Ginni
Then, in December 2000, with an 8 month old daughter, the symptoms returned and I was diagnosed by a neurologist. It wasn't as bad, but the symptoms still have not left completely, still have the tingling, spasms, electric shock in spine and intolerance of heat.
I try to work out every day at lunch, and sometimes can hardly do but a few minutes on the treadmill. It simply terrifies me. I don't know how everyone else deals with the fear of losing mobility or ability. I am having a really hard time with it. And because I am mostly "fine", my friends and husband don't understand. When I am fatigued, I am still expected to do all that I usually do, work my job, care for my 1 year old, clean the house, etc. etc.
I am on Betaseron and have been for about 2 months now. I don't have flu-like symptoms often, but do have site reactions, and have not had any clear up of symptoms with it. I will consider copaxone if this doesn't seem to be helping.
I would recommend using some treatment though, as you don't want the damage from this disease to make your later life unbearable. The treatments have been clinically proven to help in that area, even if they don't show many results now.
If you ever want to talk, email me: ginnibobinni@yahoo.com
Ginni
bain
06-12-2001, 12:18 AM
Hi Ginni
Nice to hear from someone who is used to
working out. I don't know how you people with
families manage! I come home and take a
cold bath and stare into space until I can
function again. I can't imagine caring for
a child and spouse. My hat's off to you!
I can only do a little bit
of walking, if it's very cool. I have
an exer-bike, but it's so boring. I should
do it more, I guess. But I preferred the
outdoors. It was 101 here today. I can
barely stand to get from the house to
the car to get to work. ugh.
I guess, other than having gained about
50 lbs in the last 4 years, I "look fine",
too. I have only fallen at work once, but
only one person was there to see it. But
having this "bouncy vertigo", as one of
my doctors calls it (like walking on a
waterbed while drunk, I think) is such
a scary thing, and seeing people in a
blurry, wibbly-wobbly way. If they only knew!
When I went blind, I started wearing tinted
glasses at work and had them knock out the
lights above my desk to cut out glare.
Heat bothers me, light bothers me, sharp
noises bother me... and the others there just
whisper, giggle, sneak looks at me, rolling
their eyes at my "special needs". I honestly
think I'd rather be missing a limb, than
go through that. Hidden disability is
a burden I wouldn't wish on my worst enemy.
I am about at the end of my rope with
the people I work with and other friends,
who just do NOT get it. I was relieved
at the diagnosis initially, thinking that
finally people will understand. HA! I had
the worst week ever, last week -- the
people at work snickering because I felt
ill enough to finally bring a cane (I had
fallen, broken a finger, and really hurt
myself on the weekend, and felt very
unsteady)
So, I was dealing with their lack of
empathy and I go to my neurologist for
my checkup, and he's very stern with me
because I'm not taking the MS seriously
enough and am trying to do too much, not
accepting my limitations. (he was only
briefly hard on me, was mostly encouraging
me to face the facts and start treatment)
So, there's an interesting juxtaposition,
I'm in the middle struggling, while people
on one side think I'm not accepting
it enough, and the other side thinks I'm
taking it TOO seriously! I can't believe
how nasty and weird people can be...or
I really work with a bunch of jerks.
A Copaxone question (or have I asked this?):
What if I order this, try one, and it
totally messes me up and I can't handle
taking it? Do I throw nearly 900 bucks
worth of medicine away? Send it back?
I wonder if it's possible to get a "trial"
injection, to see how I tolerate it. Guess
I could ask the doc, huh?
I'm glad to see replies here, and hope
to visit regularly, as I am able. My eye
is still iffy, so I don't spend as much
time online, and my broken finger is
a hindrance right now, but I'm glad to
connect with others.
cheers,
bain
Nice to hear from someone who is used to
working out. I don't know how you people with
families manage! I come home and take a
cold bath and stare into space until I can
function again. I can't imagine caring for
a child and spouse. My hat's off to you!
I can only do a little bit
of walking, if it's very cool. I have
an exer-bike, but it's so boring. I should
do it more, I guess. But I preferred the
outdoors. It was 101 here today. I can
barely stand to get from the house to
the car to get to work. ugh.
I guess, other than having gained about
50 lbs in the last 4 years, I "look fine",
too. I have only fallen at work once, but
only one person was there to see it. But
having this "bouncy vertigo", as one of
my doctors calls it (like walking on a
waterbed while drunk, I think) is such
a scary thing, and seeing people in a
blurry, wibbly-wobbly way. If they only knew!
When I went blind, I started wearing tinted
glasses at work and had them knock out the
lights above my desk to cut out glare.
Heat bothers me, light bothers me, sharp
noises bother me... and the others there just
whisper, giggle, sneak looks at me, rolling
their eyes at my "special needs". I honestly
think I'd rather be missing a limb, than
go through that. Hidden disability is
a burden I wouldn't wish on my worst enemy.
I am about at the end of my rope with
the people I work with and other friends,
who just do NOT get it. I was relieved
at the diagnosis initially, thinking that
finally people will understand. HA! I had
the worst week ever, last week -- the
people at work snickering because I felt
ill enough to finally bring a cane (I had
fallen, broken a finger, and really hurt
myself on the weekend, and felt very
unsteady)
So, I was dealing with their lack of
empathy and I go to my neurologist for
my checkup, and he's very stern with me
because I'm not taking the MS seriously
enough and am trying to do too much, not
accepting my limitations. (he was only
briefly hard on me, was mostly encouraging
me to face the facts and start treatment)
So, there's an interesting juxtaposition,
I'm in the middle struggling, while people
on one side think I'm not accepting
it enough, and the other side thinks I'm
taking it TOO seriously! I can't believe
how nasty and weird people can be...or
I really work with a bunch of jerks.
A Copaxone question (or have I asked this?):
What if I order this, try one, and it
totally messes me up and I can't handle
taking it? Do I throw nearly 900 bucks
worth of medicine away? Send it back?
I wonder if it's possible to get a "trial"
injection, to see how I tolerate it. Guess
I could ask the doc, huh?
I'm glad to see replies here, and hope
to visit regularly, as I am able. My eye
is still iffy, so I don't spend as much
time online, and my broken finger is
a hindrance right now, but I'm glad to
connect with others.
cheers,
bain
GinniBoBinni
06-12-2001, 11:56 AM
Hi,
In answer to your question of Copaxone, I don't know about getting a trial but I do know you can't send back the rest. Too much liability risk there. I 100% encourage you to get on treatment. And this is coming from someone who is ALLERGIC to 90% of antibiotics I've ever taken. I am SO sensitive to meds. The Betaseron isn't wonderful - side effects are there, but I believe that the treatment will help and that's worth it. Give it a try. You won't know until you do.
It's been nice connecting with you. Do keep in touch.
Ginni
In answer to your question of Copaxone, I don't know about getting a trial but I do know you can't send back the rest. Too much liability risk there. I 100% encourage you to get on treatment. And this is coming from someone who is ALLERGIC to 90% of antibiotics I've ever taken. I am SO sensitive to meds. The Betaseron isn't wonderful - side effects are there, but I believe that the treatment will help and that's worth it. Give it a try. You won't know until you do.
It's been nice connecting with you. Do keep in touch.
Ginni
bain
06-12-2001, 04:01 PM
wow, it's great to hear from someone also
sensitive to meds. I take Benadryl every
time I take a new drug, just to avoid
a weird reaction. That calms down a lot
of things.
Also, I was wondering, as I think seriously
about the Copaxone -- what if I really
*don't* have MS?
I guess after so many years of not being
diagnosed, it's still hard to actually
believe this is what my problem is. I was
told it was in my head so many times,
or that i was "upsetting" myself. (although
the problems came before the being upset
about them!) that I sometimes wonder
if this is a correct diagnosis.
then, oh yeah, I remember the optic neuritis
and the spinal tap and stuff... I just
want to make sure this is what I need to
be taking, and that I don't have another
doctor on my hands who can't be trusted.
Then, on the other hand, I think of the
years I KNEW something was wrong, and
pretty much figured out it was MS.
But this is what goes through my mind
as I consider the Copaxone -- if I don't
have MS, will it have an adverse effect
on what I *do* have?
I'm not afraid of needles, but tell me
i might have flushing or constricted throat,
and I get REALLY panicky! :) I am terrified
of the Betaseron. I have enough of a general
crummy feeling, without adding side effects
like that...
every bit of this kind of personal history
is good to hear.
bain
[This message has been edited by bain (edited 06-12-2001).]
sensitive to meds. I take Benadryl every
time I take a new drug, just to avoid
a weird reaction. That calms down a lot
of things.
Also, I was wondering, as I think seriously
about the Copaxone -- what if I really
*don't* have MS?
I guess after so many years of not being
diagnosed, it's still hard to actually
believe this is what my problem is. I was
told it was in my head so many times,
or that i was "upsetting" myself. (although
the problems came before the being upset
about them!) that I sometimes wonder
if this is a correct diagnosis.
then, oh yeah, I remember the optic neuritis
and the spinal tap and stuff... I just
want to make sure this is what I need to
be taking, and that I don't have another
doctor on my hands who can't be trusted.
Then, on the other hand, I think of the
years I KNEW something was wrong, and
pretty much figured out it was MS.
But this is what goes through my mind
as I consider the Copaxone -- if I don't
have MS, will it have an adverse effect
on what I *do* have?
I'm not afraid of needles, but tell me
i might have flushing or constricted throat,
and I get REALLY panicky! :) I am terrified
of the Betaseron. I have enough of a general
crummy feeling, without adding side effects
like that...
every bit of this kind of personal history
is good to hear.
bain
[This message has been edited by bain (edited 06-12-2001).]
General_Confusion
06-12-2001, 06:01 PM
Howdy bain,
I'm really sorry that you have had bad experinces with doctors in the past. If you're really concerned about a possible misdiagnosis, I would suggest seeking a second opinion.
As far as a trial dose of the meds, I don't think that will tell you very much. My doc told me that most of the possible side effects I could have from it would show up between two weeks and three months from the start of therapy. The one exception that pops to mind is injection site reaction. It can appear with the first dose, and generally gets milder as your body gets used to accepting the meds.
For better answers about Copaxone, I think you should call Shared Solutions (the phone nurses that work for Teva-Marion, maker of Copaxone) at 1-800-887-8100. You can get help with questions and a whole bunch of MS things there, even if you aren't taking Copaxone. Enrollment in the program is free. I'm pretty sure (99%) they will help you with your questions even if you don't enroll. They also deal with financial assistance and fighting with insurance companies as it relates to Copaxone. If you don't want to speak with someone but would like info about Copaxone straight from the horse's mouth, go to copaxone.com.
Anyhow, as I've stated earlier, I have used all of the ABC drugs and like Copaxone the best. My side effects have been injection site soreness/itching (~60% of the the sites, rather unpredictable) and MINOR chest tightness. It was only one incident, and felt like I was in a bear hug. Given by a 5 year old. A small one. ;-) Also, it's worth noting that I am half Japanese, and react more strongly to drugs than most of the caucasian population.
Good luck to you bain, and good health to all.
Jason
[This message has been edited by General_Confusion (edited 06-12-2001).]
I'm really sorry that you have had bad experinces with doctors in the past. If you're really concerned about a possible misdiagnosis, I would suggest seeking a second opinion.
As far as a trial dose of the meds, I don't think that will tell you very much. My doc told me that most of the possible side effects I could have from it would show up between two weeks and three months from the start of therapy. The one exception that pops to mind is injection site reaction. It can appear with the first dose, and generally gets milder as your body gets used to accepting the meds.
For better answers about Copaxone, I think you should call Shared Solutions (the phone nurses that work for Teva-Marion, maker of Copaxone) at 1-800-887-8100. You can get help with questions and a whole bunch of MS things there, even if you aren't taking Copaxone. Enrollment in the program is free. I'm pretty sure (99%) they will help you with your questions even if you don't enroll. They also deal with financial assistance and fighting with insurance companies as it relates to Copaxone. If you don't want to speak with someone but would like info about Copaxone straight from the horse's mouth, go to copaxone.com.
Anyhow, as I've stated earlier, I have used all of the ABC drugs and like Copaxone the best. My side effects have been injection site soreness/itching (~60% of the the sites, rather unpredictable) and MINOR chest tightness. It was only one incident, and felt like I was in a bear hug. Given by a 5 year old. A small one. ;-) Also, it's worth noting that I am half Japanese, and react more strongly to drugs than most of the caucasian population.
Good luck to you bain, and good health to all.
Jason
[This message has been edited by General_Confusion (edited 06-12-2001).]
MarshaS
06-12-2001, 06:32 PM
Hi Bain
My boyfriend is now disabled, he used to ride his bike to work everyday. He worked for the city of Amsterdam the Netherlands. Now he walks with a cane.
He started Avonex in October 2000. He only had the flu like symptoms in the beginning and itīs different for everyone. The very first time he may have ran a slight fever but he got a headache and tired, a bit moody a few days later. But symptoms taper off.
Somewhere I did read about the companies like Avonex offering trial meds. I think you have to go thru a process to see if you qualify.
I know that all of this can be very scary and itīs a big change for you in your life, but you will adapt. You may have to "redefine" yourself, find new hobbies, just cáuse you donīt run doesnt mean you canīt have an interest in the hobby or even advise people who do want to run. I canīt play tennis but I love the game,
My boyfriend also has the eye disturbances and heat affects him very badly. Fortunately we donīt have much heat in Holland, we donīt even have airconditioning but when we do have a few days of 80 degree weather itīs hard on him.
I used to live in Texas, what part are you in?
Also, you may have to explain to your co-workers how it is for you. People can be seemingly cruel but I think that once you explain to them how it is with you they will be very helpful to you. They may not know how to respond to the MS symptoms.
I donīt have MS but I hope you wonīt mind me advisng you on it. I live with MS although I am not afflicted with it. And it affects me in different ways then my bf, but affects me just the same.
I think you are doing very well for yourself, give yourself some credit.
My boyfriend is now disabled, he used to ride his bike to work everyday. He worked for the city of Amsterdam the Netherlands. Now he walks with a cane.
He started Avonex in October 2000. He only had the flu like symptoms in the beginning and itīs different for everyone. The very first time he may have ran a slight fever but he got a headache and tired, a bit moody a few days later. But symptoms taper off.
Somewhere I did read about the companies like Avonex offering trial meds. I think you have to go thru a process to see if you qualify.
I know that all of this can be very scary and itīs a big change for you in your life, but you will adapt. You may have to "redefine" yourself, find new hobbies, just cáuse you donīt run doesnt mean you canīt have an interest in the hobby or even advise people who do want to run. I canīt play tennis but I love the game,
My boyfriend also has the eye disturbances and heat affects him very badly. Fortunately we donīt have much heat in Holland, we donīt even have airconditioning but when we do have a few days of 80 degree weather itīs hard on him.
I used to live in Texas, what part are you in?
Also, you may have to explain to your co-workers how it is for you. People can be seemingly cruel but I think that once you explain to them how it is with you they will be very helpful to you. They may not know how to respond to the MS symptoms.
I donīt have MS but I hope you wonīt mind me advisng you on it. I live with MS although I am not afflicted with it. And it affects me in different ways then my bf, but affects me just the same.
I think you are doing very well for yourself, give yourself some credit.
bain
06-12-2001, 06:55 PM
thanks, all! I know my posts are long and
whiney, and I appreciate reading patient
replies.
I have tried to educate my coworkers --
they couldn't care less. I asked my
boss if he could do anything he could to
foster sensitivity and tolerance. He smothered a yawn. I gave a few people
an article that was in the Parade Sunday
mag, which hit the high points of MS
problems. I thought maybe they could pass
the info on to the people I'm not so close
to. we all work in one large room, different
departments. Apparently, no one was too
impressed by the article. sigh. I've worked
here 20 years, and we have a lot of people
who haven't been here long -- I can't
imagine getting this kind of blah treatment
and outright eye-rolling, from others I've
worked with in the past!
If I had migraines, or carpal tunnel, they
would be falling all over me with gushing
empathy, making accommodations, etc. They do that for others.
But not with MS. Imagine being told "hey, at
least it's not lupus".
I'm used to injection site reactions, since
I give myself allergy shots -- I've always
got an itchy red lump somewhere. :) Since
Copaxone is subcu, and not IM, I think that
will be easy for me to handle.
I'm in west-central Texas -- San Angelo. We
measure distance by hours in Tx, so that
means I'm 7 hours from Houston, 7 hours from
El Paso, 5 hours from Dallas, and 2.5 hours
up from the Mexican border. And it's 101
outside today, 80 in my office, with 60%
humidity. So humid, our carpet looks like
ocean waves. I can see myself tripping on
it and bashing my head on a glass door we
have, on the way to the restrooms.
Sigh. I wish I could work at home, where
I keep it 65! (yep, the energy crisis is
all my fault, *laugh*)
I think I'm about ready to call Shared Solutions, and go over my info box and
watch the tape again, read the booklet
more thoroughly. As I may have said, I had the info 8 months before looking at it. The
doc wasn't all that forceful about my taking
it initially, but after my recent visit,
he realizes just how difficult things are.
I didn't want to admit all the struggles,
but I finally poured out all the things that
bother me. I gave him my symptom diary. I was
so intimidated by the wacko doctors I had,
that I was too afraid to keep sharing what
was wrong. I just became a hermit, I take
a lot of sick leave to just lie down
and be in a cool place, or to catch up on
sleep and avoid stimulation. My main doctor gives me Valium for the worst dizzy/confusion
problems, Bentyl for the digestive oddities,
and I take the occasional Fioricet for the
TN pain (which takes the edge off but doesn't
completely help) If it weren't for him, I'd
not have survived at all at work or just,
at all, all these years. I lost my way of
life and my significant other to this
condition, but I hope to climb back up,
eventually!
I am so tired of falling, and being wobbly
in the head and legs, though. Having a
bad day, today.
cheers --
bain
whiney, and I appreciate reading patient
replies.
I have tried to educate my coworkers --
they couldn't care less. I asked my
boss if he could do anything he could to
foster sensitivity and tolerance. He smothered a yawn. I gave a few people
an article that was in the Parade Sunday
mag, which hit the high points of MS
problems. I thought maybe they could pass
the info on to the people I'm not so close
to. we all work in one large room, different
departments. Apparently, no one was too
impressed by the article. sigh. I've worked
here 20 years, and we have a lot of people
who haven't been here long -- I can't
imagine getting this kind of blah treatment
and outright eye-rolling, from others I've
worked with in the past!
If I had migraines, or carpal tunnel, they
would be falling all over me with gushing
empathy, making accommodations, etc. They do that for others.
But not with MS. Imagine being told "hey, at
least it's not lupus".
I'm used to injection site reactions, since
I give myself allergy shots -- I've always
got an itchy red lump somewhere. :) Since
Copaxone is subcu, and not IM, I think that
will be easy for me to handle.
I'm in west-central Texas -- San Angelo. We
measure distance by hours in Tx, so that
means I'm 7 hours from Houston, 7 hours from
El Paso, 5 hours from Dallas, and 2.5 hours
up from the Mexican border. And it's 101
outside today, 80 in my office, with 60%
humidity. So humid, our carpet looks like
ocean waves. I can see myself tripping on
it and bashing my head on a glass door we
have, on the way to the restrooms.
Sigh. I wish I could work at home, where
I keep it 65! (yep, the energy crisis is
all my fault, *laugh*)
I think I'm about ready to call Shared Solutions, and go over my info box and
watch the tape again, read the booklet
more thoroughly. As I may have said, I had the info 8 months before looking at it. The
doc wasn't all that forceful about my taking
it initially, but after my recent visit,
he realizes just how difficult things are.
I didn't want to admit all the struggles,
but I finally poured out all the things that
bother me. I gave him my symptom diary. I was
so intimidated by the wacko doctors I had,
that I was too afraid to keep sharing what
was wrong. I just became a hermit, I take
a lot of sick leave to just lie down
and be in a cool place, or to catch up on
sleep and avoid stimulation. My main doctor gives me Valium for the worst dizzy/confusion
problems, Bentyl for the digestive oddities,
and I take the occasional Fioricet for the
TN pain (which takes the edge off but doesn't
completely help) If it weren't for him, I'd
not have survived at all at work or just,
at all, all these years. I lost my way of
life and my significant other to this
condition, but I hope to climb back up,
eventually!
I am so tired of falling, and being wobbly
in the head and legs, though. Having a
bad day, today.
cheers --
bain
MarshaS
06-13-2001, 05:15 AM
Hi Bain,
I grew up in El Paso, born in Oklahoma, I can relate to the heat. I had a short bad marriage in East Texas decided to leave him there. I hope I am not out of line here, but I do find some Texans are less sensitive to the needs of others. Itīs just different in different places with people I donīt care what they say people do respond differently depending on their environment, you are working around some apathy, I am sorry.
I have always loved West Texas and New Mexico, would love to return there one day. My brother still lives in El Paso. But if I visit I would not bring my BF as it is too difficult for him with the heat.
When we go out I push my bf in a wheelchair. I always get so angry at the way people just walk in front of us. I have to learn to quit complaining though because I know that hearing me complain canīt be very comfortable for my bf. Sometimes I think it would do a lot people good to have to leave with some limitation or disabililty so that they can first of all slow down their lives a little and secondly, learn compassion. I donīt know why everyone is in such a big hurry anyway.
Your writing is very good, expressive, not everyone has that gift.
It sounds as though you are receiving good medical treatment now. I donīt know how long you have been on the meds but I do know some meds take longer to work than others or work against other medications. You can always check with your pharmacist, they actually know more about the meds then the drs cos thatīs their job to keep on top of things.
I enjoy reading your posts, and for what itīs worth there are those out here who do empathize with you and your condition.
bye now!
Do you work full time? Is it possible to work parttime or would you want to?
[This message has been edited by MarshaS (edited 06-13-2001).]
I grew up in El Paso, born in Oklahoma, I can relate to the heat. I had a short bad marriage in East Texas decided to leave him there. I hope I am not out of line here, but I do find some Texans are less sensitive to the needs of others. Itīs just different in different places with people I donīt care what they say people do respond differently depending on their environment, you are working around some apathy, I am sorry.
I have always loved West Texas and New Mexico, would love to return there one day. My brother still lives in El Paso. But if I visit I would not bring my BF as it is too difficult for him with the heat.
When we go out I push my bf in a wheelchair. I always get so angry at the way people just walk in front of us. I have to learn to quit complaining though because I know that hearing me complain canīt be very comfortable for my bf. Sometimes I think it would do a lot people good to have to leave with some limitation or disabililty so that they can first of all slow down their lives a little and secondly, learn compassion. I donīt know why everyone is in such a big hurry anyway.
Your writing is very good, expressive, not everyone has that gift.
It sounds as though you are receiving good medical treatment now. I donīt know how long you have been on the meds but I do know some meds take longer to work than others or work against other medications. You can always check with your pharmacist, they actually know more about the meds then the drs cos thatīs their job to keep on top of things.
I enjoy reading your posts, and for what itīs worth there are those out here who do empathize with you and your condition.
bye now!
Do you work full time? Is it possible to work parttime or would you want to?
[This message has been edited by MarshaS (edited 06-13-2001).]
bain
06-14-2001, 12:26 PM
hi Marsha --
isn't it amazing how apathetic people can
be about things? Is it that they are rude,
or just don't think? I also wish everyone
had to get through the day feeling like
someone who has our particular invisible
problems.
Actually, it's not the Texans in my workplace
who are being so cavalier about things.
Everyone here is from another state,
including my boss!
Yes, I work fulltime (if you count taking
off my 8 sick and 12 hrs vacation each
month, plus some unpaid leave)
I am my sole support, no spouse, children,
siblings or parents to help. There is
no way I can work 1/2 time. It is frightening, sometimes, when I'm feeling
so bad. I don't understand what "exacerbations" entails, because I am
never without tingling, balance problems,
or tightness. It's just a matter of degree.
If I rush around or get angry (easy, here
at work) or upset or if my body heats up
in any way -- fighting infection/allergy,
eating spicy food, being in the sun or
taking a hot bath -- I get so foofled in
the head that I can't think. And the
"dizzy legs", of course. I never go without
symptoms; I never see a clear definition
between sick/not sick.
I just found out my insurance pays all
but $20 of Copaxone, so I am getting closer
to a "yes".
I'm actually getting excited about using
it, now.
Now, I have questions about how the autoject
works -- it's reusable? does anybody here
use this method?
bain
isn't it amazing how apathetic people can
be about things? Is it that they are rude,
or just don't think? I also wish everyone
had to get through the day feeling like
someone who has our particular invisible
problems.
Actually, it's not the Texans in my workplace
who are being so cavalier about things.
Everyone here is from another state,
including my boss!
Yes, I work fulltime (if you count taking
off my 8 sick and 12 hrs vacation each
month, plus some unpaid leave)
I am my sole support, no spouse, children,
siblings or parents to help. There is
no way I can work 1/2 time. It is frightening, sometimes, when I'm feeling
so bad. I don't understand what "exacerbations" entails, because I am
never without tingling, balance problems,
or tightness. It's just a matter of degree.
If I rush around or get angry (easy, here
at work) or upset or if my body heats up
in any way -- fighting infection/allergy,
eating spicy food, being in the sun or
taking a hot bath -- I get so foofled in
the head that I can't think. And the
"dizzy legs", of course. I never go without
symptoms; I never see a clear definition
between sick/not sick.
I just found out my insurance pays all
but $20 of Copaxone, so I am getting closer
to a "yes".
I'm actually getting excited about using
it, now.
Now, I have questions about how the autoject
works -- it's reusable? does anybody here
use this method?
bain
MarshaS
06-14-2001, 04:27 PM
Good for you Bain,
I donīt know anything about Copaxone cos we use Avonex.
But I know you are excited. My bf was the same way when the dr suggested he go on Avonex but the Dr was going on holiday for several weeks and we had to wait till he got back. But now itīs been since October. Everything seems well.
I think you would do well with a support group in your area. You may find many people are dealing with the same symptoms you are.
My bf has sensitivity to sound, heat, stress, no all the time. Sometimes we will watch a movie and it seems the sound is blasting and I have to say something to get it down. So I guess it varies. Sometimes I have to distinguish what is the cause of the MS and what is just normal.
Itīs a shame that not everyone there is from Texas, but are transplants, now I canīt blast them at one go.
Truly though you are a trooper. Just remember this is an adjustment to you. And though you may have enjoyed a sport like running at one time, I truly believe you need to find something you feel passionately about at home now.
Let us know about the copaxone. I am very curious.
Bye now!
I donīt know anything about Copaxone cos we use Avonex.
But I know you are excited. My bf was the same way when the dr suggested he go on Avonex but the Dr was going on holiday for several weeks and we had to wait till he got back. But now itīs been since October. Everything seems well.
I think you would do well with a support group in your area. You may find many people are dealing with the same symptoms you are.
My bf has sensitivity to sound, heat, stress, no all the time. Sometimes we will watch a movie and it seems the sound is blasting and I have to say something to get it down. So I guess it varies. Sometimes I have to distinguish what is the cause of the MS and what is just normal.
Itīs a shame that not everyone there is from Texas, but are transplants, now I canīt blast them at one go.
Truly though you are a trooper. Just remember this is an adjustment to you. And though you may have enjoyed a sport like running at one time, I truly believe you need to find something you feel passionately about at home now.
Let us know about the copaxone. I am very curious.
Bye now!
MarshaS
06-14-2001, 06:20 PM
And I know itīs none of my business, but you can work at parttime job and still draw a disability. You may need to work less to give your body time to rest. Then maybe some of the symptoms will subside.
Just some thoughts. :)
bye now!
Just some thoughts. :)
bye now!
General_Confusion
06-14-2001, 09:12 PM
Howdy bain. To answer your question, yes, the autoject is reuseable, and yes, I use one. I have at one time or another given myself injections of all the ABC drugs (not at the same time! ;-) ) and I think that the autoject is the easiest method. Just push the button and BAM!, there's a needle in you. You have to wait a few seconds until all of the meds have been delivered, but it's pretty quick and easy, like my date to the senior prom. (No flames please, just a joke, and I am now married to her!)
I'm glad to hear you're getting excited about going on meds. It's a nice feeling to claim back some of the power MS has taken from you by doing something to fight it.
Jason
I'm glad to hear you're getting excited about going on meds. It's a nice feeling to claim back some of the power MS has taken from you by doing something to fight it.
Jason
bain
06-15-2001, 01:44 AM
Originally posted by MarshaS:
And I know itīs none of my business, but you can work at parttime job and still draw a disability.
--I appreciate your input, and you can
offer it anytime. I have put in nearly 20
years here, and paid retirement in. I
haven't really investigated options, but
I really fear being stuck for the rest of
my life trying to live on $600 a month
or whatever disability might be. I am in
no shape to look for a different job, and
I wonder who'd hire someone who takes
days and days off, every month. I'm
practically part-time, already! :) I guess
I'm lucky that in my job, it doesn't matter
when I take off, the work will be there
when I get back. But I feel guilty every
second I take off. I do need to start
considering options, though. If I can ever
think straight...
I think that one reason people might be
lacking empathy is that I have hidden my
symptoms for so long. Even from my
friends and family. I would just disappear
and try to regroup. Since I didn't know
I had MS, I thought I had brain damage or
panic attacks that made my insides vibrate
and my vision go blurry. So I hid away like a
wounded animal, and got snappy at loved ones, and they all thought I was just moody and lazy and difficult. I'm really a strong person, and I know that some of the things that bother me would be way too much for someone else to handle.
The facial pain alone, for instance, would give any migraine a run
for its money! If they only could understand
how that particular "beep" of the fax slices
right through my nerve (or so it feels)
We had some guy in the place doing some
computer input thing, and making a beep
every 18 seconds, for a week. I thought
I would lose my mind with pain. I tried
to tough it out, but I finally had to
ask him to turn it down. They all think
I am an idiot for asking the lights to
be darkened, and that I wear earplugs at
work.
I have tried to explain where the
expression "gets on your nerves" comes
from, and what it feels like, literally,
but they whine about their sinus headache or their stuffy allergy nose problems, and
and wander off, rolling their eyes at me.
You may need to work less to give your body time to rest. Then maybe some of the symptoms will subside.
I wish I could work less.
I am always rushed, always too hot, and
too busy. I have always been Type A, and I
have to learn to control my temper, which, when I go off, causes that odd pounding that starts in my head and travels down the spine until I can't walk straight. And yes, even good things bother me, if I get excited.
I am lucky that my commute is short -- 5-6 minutes. And I come home and lie down in a very cool house at lunchtime. I am now learning that i must limit errands per day, especially in the heat. I have also learned to ask for help, something I detest. :(
I am learning to go more slowly in all
things, but it's not easy. Even throwing
a recipe together can set me off, if I'm
turning, bending, reaching; doing 10 things
at once. Pretty soon I'm nearly on the floor!
Such a weird feeling.
And the heat -- Ugh. 104 today. I literally
thought I was going to have a seizure, my
body/mind were so confused. I have to
take a cold bath every day after work
to quiet my system. I didn't have a chance
to cool down at lunch, I had to get groceries. I almost didn't make it back
to work because I was so confused and
felt so unsteady and ill. I should not
have gone to get groceries at lunch, that's
definite "NO" from the doctor. Sigh. I needed butter! :)
Okay, I have almost made it through this
week, I have a new letter from my doc
patiently explaining, again, what heat
does to me. So if work insists on cranking
the heat up to 80 to save on energy, I'll
have my letter ready.
Friday to get through, and then, I hibernate
until Monday. I sometimes never step
outside, on weekends. I feel so great,
inside, even if my feet and legs do tingle,
no matter what I do!
cheers and happy weekend to all,
bain
[This message has been edited by bain (edited 06-15-2001).]
And I know itīs none of my business, but you can work at parttime job and still draw a disability.
--I appreciate your input, and you can
offer it anytime. I have put in nearly 20
years here, and paid retirement in. I
haven't really investigated options, but
I really fear being stuck for the rest of
my life trying to live on $600 a month
or whatever disability might be. I am in
no shape to look for a different job, and
I wonder who'd hire someone who takes
days and days off, every month. I'm
practically part-time, already! :) I guess
I'm lucky that in my job, it doesn't matter
when I take off, the work will be there
when I get back. But I feel guilty every
second I take off. I do need to start
considering options, though. If I can ever
think straight...
I think that one reason people might be
lacking empathy is that I have hidden my
symptoms for so long. Even from my
friends and family. I would just disappear
and try to regroup. Since I didn't know
I had MS, I thought I had brain damage or
panic attacks that made my insides vibrate
and my vision go blurry. So I hid away like a
wounded animal, and got snappy at loved ones, and they all thought I was just moody and lazy and difficult. I'm really a strong person, and I know that some of the things that bother me would be way too much for someone else to handle.
The facial pain alone, for instance, would give any migraine a run
for its money! If they only could understand
how that particular "beep" of the fax slices
right through my nerve (or so it feels)
We had some guy in the place doing some
computer input thing, and making a beep
every 18 seconds, for a week. I thought
I would lose my mind with pain. I tried
to tough it out, but I finally had to
ask him to turn it down. They all think
I am an idiot for asking the lights to
be darkened, and that I wear earplugs at
work.
I have tried to explain where the
expression "gets on your nerves" comes
from, and what it feels like, literally,
but they whine about their sinus headache or their stuffy allergy nose problems, and
and wander off, rolling their eyes at me.
You may need to work less to give your body time to rest. Then maybe some of the symptoms will subside.
I wish I could work less.
I am always rushed, always too hot, and
too busy. I have always been Type A, and I
have to learn to control my temper, which, when I go off, causes that odd pounding that starts in my head and travels down the spine until I can't walk straight. And yes, even good things bother me, if I get excited.
I am lucky that my commute is short -- 5-6 minutes. And I come home and lie down in a very cool house at lunchtime. I am now learning that i must limit errands per day, especially in the heat. I have also learned to ask for help, something I detest. :(
I am learning to go more slowly in all
things, but it's not easy. Even throwing
a recipe together can set me off, if I'm
turning, bending, reaching; doing 10 things
at once. Pretty soon I'm nearly on the floor!
Such a weird feeling.
And the heat -- Ugh. 104 today. I literally
thought I was going to have a seizure, my
body/mind were so confused. I have to
take a cold bath every day after work
to quiet my system. I didn't have a chance
to cool down at lunch, I had to get groceries. I almost didn't make it back
to work because I was so confused and
felt so unsteady and ill. I should not
have gone to get groceries at lunch, that's
definite "NO" from the doctor. Sigh. I needed butter! :)
Okay, I have almost made it through this
week, I have a new letter from my doc
patiently explaining, again, what heat
does to me. So if work insists on cranking
the heat up to 80 to save on energy, I'll
have my letter ready.
Friday to get through, and then, I hibernate
until Monday. I sometimes never step
outside, on weekends. I feel so great,
inside, even if my feet and legs do tingle,
no matter what I do!
cheers and happy weekend to all,
bain
[This message has been edited by bain (edited 06-15-2001).]
MarshaS
06-15-2001, 06:26 PM
HI Bain,
Itīs me again.
I know that it must be hard to ask for help,and I am a type A personality too. But by accepting a certain amount of your limitations, I think you will find it will free you up, less stress trying to do the little things.And give you a chance to enjoy yourself a little more in whatever activity that may be, maybe you play the guitar, or paint by number, but everyone needs time to rest and re-create. But the rest should not be from total exertion, it should be before you get to that point, to keep from being at that point.
I donīt know if your town offers a grocery home delivery service, but that may be something to consider. If not, hire someone to do some personal errands for you. Usually some teenager would love a few bucks to run to the grocer. Or if you contacted your Department of Human Services, they could probably lead you in the right direction regarding getting some domestic help that wonīt be costly.
You are right, when we donīt let people in on our problems, they are not very sympathetic. I have a problem with telling anyone that anything is wrong with me. I want everyone to think I am in control even when I am not.
I think we always fear the unknown, but until you look into your options you wonīt know what is available to you. However, at this point, I think you are keeping yourself too busy to feel like looking at any other options and too tired or distracted to do anything about it. Itīs very common in todayīs society to be that busy, and stressed and torn in a dozen different directions at once, a person is considered slow and lazy if they are not constantly multitasking.. however, I think that our society plays a big role in people having ADD (as you know, Attentin Deficit Disorder) We get so caught up in "busy" all the time, that we forget to converse, to relax.. oh, I think I am getting off the subject.... :) thatīs another issue :)
Being disabled is not your fault, you shouldnīt feel like you have to carry the burden for it. There are a lot of groups for people with all kinds of disabilites, that until you take the time, pick up the phone and start calling around, you wonīt know what you can and cannot do. We do live in a civlized society, somewhat, and there are programs designed to help people. That doesnt mean you have to give in entirely to them.. but see what help they can offer you. If itīs anything from maybe someone to help with your small errands, to just giving you a list of organizations that can tell you what they have to offer.. anything from support groups to medical information, to, well just anything. Thatīs why a call would help you find out what is there.
Otherwise, you will continue to wear yourself down, fighting the MS and not finding what can benefit you. I think that itīs more of reaching a balance, like an agreement with the disease that you wonīt do this if it wonīt do that.. is that very clear? I may be rambling a bit. But I think you know what I mean. We have to bargin a lot of times in our lives with something. We have to find that "balance".
I hope I am not saying to much here. I empathize with your situation, and I hope that you are able to find that "balance" in your life.
Have a restful weekend!
Bye now!
Itīs me again.
I know that it must be hard to ask for help,and I am a type A personality too. But by accepting a certain amount of your limitations, I think you will find it will free you up, less stress trying to do the little things.And give you a chance to enjoy yourself a little more in whatever activity that may be, maybe you play the guitar, or paint by number, but everyone needs time to rest and re-create. But the rest should not be from total exertion, it should be before you get to that point, to keep from being at that point.
I donīt know if your town offers a grocery home delivery service, but that may be something to consider. If not, hire someone to do some personal errands for you. Usually some teenager would love a few bucks to run to the grocer. Or if you contacted your Department of Human Services, they could probably lead you in the right direction regarding getting some domestic help that wonīt be costly.
You are right, when we donīt let people in on our problems, they are not very sympathetic. I have a problem with telling anyone that anything is wrong with me. I want everyone to think I am in control even when I am not.
I think we always fear the unknown, but until you look into your options you wonīt know what is available to you. However, at this point, I think you are keeping yourself too busy to feel like looking at any other options and too tired or distracted to do anything about it. Itīs very common in todayīs society to be that busy, and stressed and torn in a dozen different directions at once, a person is considered slow and lazy if they are not constantly multitasking.. however, I think that our society plays a big role in people having ADD (as you know, Attentin Deficit Disorder) We get so caught up in "busy" all the time, that we forget to converse, to relax.. oh, I think I am getting off the subject.... :) thatīs another issue :)
Being disabled is not your fault, you shouldnīt feel like you have to carry the burden for it. There are a lot of groups for people with all kinds of disabilites, that until you take the time, pick up the phone and start calling around, you wonīt know what you can and cannot do. We do live in a civlized society, somewhat, and there are programs designed to help people. That doesnt mean you have to give in entirely to them.. but see what help they can offer you. If itīs anything from maybe someone to help with your small errands, to just giving you a list of organizations that can tell you what they have to offer.. anything from support groups to medical information, to, well just anything. Thatīs why a call would help you find out what is there.
Otherwise, you will continue to wear yourself down, fighting the MS and not finding what can benefit you. I think that itīs more of reaching a balance, like an agreement with the disease that you wonīt do this if it wonīt do that.. is that very clear? I may be rambling a bit. But I think you know what I mean. We have to bargin a lot of times in our lives with something. We have to find that "balance".
I hope I am not saying to much here. I empathize with your situation, and I hope that you are able to find that "balance" in your life.
Have a restful weekend!
Bye now!