lissamel's Groups
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Chronic Pain
64 members
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Migraine
156 members
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Asthma & Allergy
163 members
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Autism
33 members
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Dystonia Neuro Movemen...
268 members
lissamel's Page
Latest Activity
I now how you fell I to have DystoniaI usto only have it in the lifte side of my body, that was 2 years ago, now it is every were it is so pain full. I have been off medications for 3 years now it inerfears with my other illness, my family sometim...
05:32
This is a video I did in an attempt to help explain and show my family members how dystonia effects me.
I am concerned about your casual taking of 3/4 pills of Baclofen in a sitting.
This is extremely dangerous. Please DO NOT increase your dosage of bac and/or Binge of baclofen. It is a drug that increases your body's production of gaba and should N...
Baclofen is not an "as needed" medication. It is the type that you take a regular dose of on a daily basis and if it is not doing the job you can titrate up on the dosages (increase them gradually). However, it can be dangerous to stop taking Bacl...
this is the FIRST time i actually heard or read where a doctor FINALLY blames the drug. oh no it is never the drug. they defend big pharma till they die. but in this case the doctor is partially incorrect. baclofen actually lowers blood pressure b...
I had a strange appointment today. I have noticed for about a year, since dystonia has made a bigger appearance in my life, my blood pressure is getting worse. I pretty much do not have a history of high blood pressure, unless you count the last f...
I found it interesting when I brought this topic up to my neurologist. He said to definitely NOT tell future employers about your/my dystonia, unless it comes up as something that prevents you from doing your job...and NOT until after you get the ...
Lissamel's Blog
Stump The Doc Day
After about six months of taking meds and adding more to the mix to try and control my spams I decided to go to another Neurologist to see if another set of eyes might see things differently or have different views on the medication I am on so here is my tale to tell :-)
I go to the office I was referred to by a trusted co-worker who said the doctor had excellent "bedside\listening" manner. Apparently the office had tried to get in touch with me (no, I do not answer my cell when I do not recogn… Continue
I go to the office I was referred to by a trusted co-worker who said the doctor had excellent "bedside\listening" manner. Apparently the office had tried to get in touch with me (no, I do not answer my cell when I do not recogn… Continue
Posted on July 30, 2009 at 11:30pm — 2 Comments
this precious, precious thing
this precious, precious thing
how light it is
how heavy it can be
this precious, precious thing
how dark it is
how hard it can be
this precious, precious thing
how forgiving it is
how horrible it can be
this precious, precious thing
how joyful it is
how dreadful it can be
this precious, precious thing
how beautiful it is
how ugly it can be
this precious, precious thing
you wounder what it might be
for it is life
life of our world
the animals
the plants
the people
cannot have beauty withou… Continue
how light it is
how heavy it can be
this precious, precious thing
how dark it is
how hard it can be
this precious, precious thing
how forgiving it is
how horrible it can be
this precious, precious thing
how joyful it is
how dreadful it can be
this precious, precious thing
how beautiful it is
how ugly it can be
this precious, precious thing
you wounder what it might be
for it is life
life of our world
the animals
the plants
the people
cannot have beauty withou… Continue
Posted on June 30, 2009 at 9:34pm — 1 Comment
where did i go
where have i gone
i look around
trying to see
where have i gone
for all i see
is a mother and a wife
where have i gone
i cannot see
i know i have lost something vital
like an organ that is important
oh, my heart, my soul, my name
how do i find it again
this important piece of myself
that has long been gone these past few years
looking hard
looking deep
i think i see a glimmer
or a shadow
of what i seek
hope is on the horizon
no matter how the journey
is long and steep
hope is in the stars… Continue
i look around
trying to see
where have i gone
for all i see
is a mother and a wife
where have i gone
i cannot see
i know i have lost something vital
like an organ that is important
oh, my heart, my soul, my name
how do i find it again
this important piece of myself
that has long been gone these past few years
looking hard
looking deep
i think i see a glimmer
or a shadow
of what i seek
hope is on the horizon
no matter how the journey
is long and steep
hope is in the stars… Continue
Posted on June 30, 2009 at 9:21pm — 3 Comments
where are my dreams
where are my dreams when i need them most
and not just the dreams we see in our heads
in the dark of night
my dreams have become shattered, broken
my life seeming to be torn apart
a few years ago life set a blow
that began to tear at the fabric of my soul
like a bird
caught in a cage
beneath a shroud
forced to be quiet
forced to be subdued
i see the hole in front of me
been their before
quite a few times
they say knowledge brings power
perhaps this knowledge will be my weapon
to never let go… Continue
and not just the dreams we see in our heads
in the dark of night
my dreams have become shattered, broken
my life seeming to be torn apart
a few years ago life set a blow
that began to tear at the fabric of my soul
like a bird
caught in a cage
beneath a shroud
forced to be quiet
forced to be subdued
i see the hole in front of me
been their before
quite a few times
they say knowledge brings power
perhaps this knowledge will be my weapon
to never let go… Continue
Posted on June 30, 2009 at 8:46pm — 1 Comment
dont care
stuck in a loop
not caring
house is a mess
late to work
children breaking the rules
dont care
not caring feels bad
where has the light gone
gotta get up
dont care
gotta get moving
find a reason
to care about the world
find a reason
to find the light
from a world that has grown dark
gotta learn to care again
learn to accept
learn to give up the bad
to see the good
gotta learn to find the will
to fight for what is within
to see the potential
of what can become
gotta learn
gotta see
gotta ca… Continue
not caring
house is a mess
late to work
children breaking the rules
dont care
not caring feels bad
where has the light gone
gotta get up
dont care
gotta get moving
find a reason
to care about the world
find a reason
to find the light
from a world that has grown dark
gotta learn to care again
learn to accept
learn to give up the bad
to see the good
gotta learn to find the will
to fight for what is within
to see the potential
of what can become
gotta learn
gotta see
gotta ca… Continue
Posted on June 30, 2009 at 12:00pm — 2 Comments
Comment Wall (7 comments)
- At 2:24pm on July 1, 2009,
amanda said… - Hi Lissa! I noticed that you've posted a lot of poems here yesterday that you've written. Creative writing is a great way to express your emotions - especially when you're feeling down.
When I feel like writing poetry I use my poetry blog. It's a place where people can go to read my poems and thoughts if they want to. It's like a journal that I can access anywhere except that it's only poems.
Maybe you would like to have a poetry blog too? (I'd recommend Wordpress.com since it's so easy to use). I think a poetry blog would be a great outlet for you and a cool place to put any sort of poems that you write. And once you've started a poetry blog there you can put a link to it in your profile here. After that WEGO Health members who like to read poems or writing about Dystonia could go there and comment directly on your work. :)
Just an idea, though.
-Amanda
- At 2:55pm on June 25, 2009,
Jo said… - Hello Lissamel!
I was over the moon when I accidentally came across you,and the way you described first learning that you have Dystonia!
I have had on going health problems for years,but last summer everything flared up,such that we thought I had had a stoke! I landed up in hospital,where they decided early on, that I must have an anxiety problem,because of the way my voice sounded*! However,they did their duty,and did MRI scan, which of course was fine.
(*despite the fact that I also couldn't chew,and had difficulty eating!) The notes of course followed me to every specialist....That didnt help! Can you imagine how I felt,when I got to see a Neurologist,he had a quick look at my notes,and then said,"yes well,I think they have made the right diagnoses"!!!-before he had spoken more than a couple of words to me,(or i to him) and before he had even examined me!!
Yet everyone I have seen for the various symptoms,has told me that they are sure something neurological is going on!!
Guess what? I have an appointment tomorrow with an ENT specialist (-who tells me he is convinced that I do have a neurological problem) Now I will be able to tell him that I have fond someone with similar things to me eg Teeth-mine feel as if they are going out of place,or worse,getting longer,it feels quite horrific,I cant believe that they havent actually got longer!
Be delighted to hear from you,and how its going.
what meds are you on? maybe knowing that could help my doctors
Thanks
- At 2:45pm on February 5, 2009,
Ellen S said… - Welcome lissamel! I'm glad to see that you've joined up with the Migraine group as well as the Dystonia group. The people here at WEGO Health are wonderful.
Let me know if you need help navigating the site etc. That's just one reason why I'm here!
Ellen
- At 12:43am on February 3, 2009,
TWISTEDJAM said… - Grrrrrrrrrrreat !
Thanks Melissa !
No prob. ... I'm able to clip the pic.
See ya !
Grace/twistedjam
- At 12:31am on February 3, 2009,
TWISTEDJAM said…
- Me again !
I like the pic of the wolf and I would like to add it to the "twisted tree" pic ... would that be ok with you ?
The twisted tree could use a wolf !
Thanks
Grace/twistedjam
- At 12:20am on February 3, 2009,
TWISTEDJAM said…
- Welcome !
You might say this is a home away from home !
Not only will you find comfort and understanding but feelings of warmth from people who care and share their hardships but above all share their friendship as well !
And thanks for checking out my blog, I'm glad you liked it !
I found your comparisons to Cervical Dystonia interesting !
Welcome friend !
Grace/Toronto Canada
- At 5:31pm on February 2, 2009,
Lene said… - Welcome to our group. Please feel free to chime right in. I look at all of us as a family and I know you will also. Lene
Profile Information
- Location
- 75002
- More about me (my health interests and reasons for joining WEGO Health)
- I am a married mother of three boys - 15, 6 and 3. Work full time doing medical billing, with just starting up a business with my sister on the side creating and selling magazines specialized for special needs children. Go to Kaplan University part-time to get my accounting degree and was just diagnosed with Focal Dystonia.
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