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Niki
Feb 21, 2008, 10:56:33 AM2/21/08
to Engelmann's Syndrome
I wanted to take a quick minute before I head out to my Social
Security appointment to THANK YOU all for your gracious support! As
you all know this disease is difficult on us not just physically but
mentally, and I have to say this whole 'job' issue has really taken a
toll on me. I seem to be in great pain and exteremly tired more so
now with all this stress. Soooo I am going to take a well deserved
day at the spa, and have a full body mild massage and renew my
positive attitude and get back to my happy self :) The weather here
also is not helping since it is cold and rainy (sleet) and maybe 17
degrees today! But I will hang on and I will get through this. Since
I am not currently on any medication other than my asthma meds, I will
be suffering through this pain. If it sticks around or gets worse then
my doctor will put me on a round of Prednizone, but I do not like
taking that at all! The side effects I have are yucky... weight gain,
nightmares, swelling, moodswings, just feel yucky, but lol it really
takes the pain away, crazy what we do to get through this, lol. Thanks
to you all for everything. I am truely thankful for all of you and
everything you have done to help me out in my 'messy' situation. YOU
ALL ROCK :) THANK YOU THANK YOU THANK YOU and I will keep you posted
as to any results.
Luv to you all,
Niki
Security appointment to THANK YOU all for your gracious support! As
you all know this disease is difficult on us not just physically but
mentally, and I have to say this whole 'job' issue has really taken a
toll on me. I seem to be in great pain and exteremly tired more so
now with all this stress. Soooo I am going to take a well deserved
day at the spa, and have a full body mild massage and renew my
positive attitude and get back to my happy self :) The weather here
also is not helping since it is cold and rainy (sleet) and maybe 17
degrees today! But I will hang on and I will get through this. Since
I am not currently on any medication other than my asthma meds, I will
be suffering through this pain. If it sticks around or gets worse then
my doctor will put me on a round of Prednizone, but I do not like
taking that at all! The side effects I have are yucky... weight gain,
nightmares, swelling, moodswings, just feel yucky, but lol it really
takes the pain away, crazy what we do to get through this, lol. Thanks
to you all for everything. I am truely thankful for all of you and
everything you have done to help me out in my 'messy' situation. YOU
ALL ROCK :) THANK YOU THANK YOU THANK YOU and I will keep you posted
as to any results.
Luv to you all,
Niki
Eugene Tiffany
Feb 21, 2008, 11:16:34 PM2/21/08
to Engelmann's Syndrome
Pain medications... may be of some value... for short term
situations... and for regular pains.... but... my personal feeling is
that for Engemanns Disease leg pains... I would recommend just dealing
with itm and no matter how bad... just as I did as a child. There is a
true pay-off concerned with it. Bearing up under the pain will make
you strong... and enable one to deal with every lesser situation in
life.... and... everything is lesser! I am not taking into
consideration, emotional pain, here, however... for I found out a few
years ago, the hard way, that emotional pain is a whole different
animal. BUT in all situations that deal with physical difficulties,
experience with Englemanns Disease will make you majorly strong.
Unfortunately... it will also lessen your empathy... and sympathy...
for anyone balling their heads off because they have a hang-nail... or
have stubbed their toem and the like. You'll feel like saying to
someone that is howling over a trifle, "Suck it up... deal with it!...
it's nothing!"
BUT... that's the way it is with the world... Unless one has known
truly great pain... a small pain can seem great.
YEARS later after I knew the great pain of Engelmanns Disease, I
developed a technique for dealing with pain. I could maybe try to
explain it it here. I have taught it in classes.... and it involves a
special auto-suggestion technique... and mentally voicing what I call,
Commands, in a precise way... so I am not sure I could usefully
explain it in a message base. But it could possibly help..... to
provide at least periods of relief.
situations... and for regular pains.... but... my personal feeling is
that for Engemanns Disease leg pains... I would recommend just dealing
with itm and no matter how bad... just as I did as a child. There is a
true pay-off concerned with it. Bearing up under the pain will make
you strong... and enable one to deal with every lesser situation in
life.... and... everything is lesser! I am not taking into
consideration, emotional pain, here, however... for I found out a few
years ago, the hard way, that emotional pain is a whole different
animal. BUT in all situations that deal with physical difficulties,
experience with Englemanns Disease will make you majorly strong.
Unfortunately... it will also lessen your empathy... and sympathy...
for anyone balling their heads off because they have a hang-nail... or
have stubbed their toem and the like. You'll feel like saying to
someone that is howling over a trifle, "Suck it up... deal with it!...
it's nothing!"
BUT... that's the way it is with the world... Unless one has known
truly great pain... a small pain can seem great.
YEARS later after I knew the great pain of Engelmanns Disease, I
developed a technique for dealing with pain. I could maybe try to
explain it it here. I have taught it in classes.... and it involves a
special auto-suggestion technique... and mentally voicing what I call,
Commands, in a precise way... so I am not sure I could usefully
explain it in a message base. But it could possibly help..... to
provide at least periods of relief.
GRETCHEN OBST
Feb 26, 2008, 3:26:13 PM2/26/08
to Eugene Tiffany, Engelmann's Syndrome
I have to sat ,I TOTALLY disagree!!! If meds can help you live a functinal & productive life go for it. Who wants to stay at home and roll on the floor in pain, & rely on someone else to get you your basic nessecities? NOT ME! I've done that long enough. Eugene, I too have had MANY obsticales in my life,besides CED- eplilepsy, 4 neurosurgeries, kidney disease, lung inf. & the list goes on. Sitting @ home & not fighting? NOT AN OPTION!!! As for empathy & sympathy- i'm much more so due to everthing. People who bitch of a "hangnail" -well maybe that the biggest physical pain they have had. & if so then man it hurts. Also, I never know what else is going on in there life to make them bitch of something seemingly very small. A divorce ,death, no family or friends-- the list goes on. Sorry that this was a little harsh.
Lauren
Mar 16, 2008, 5:25:43 AM3/16/08
to Engelmann's Syndrome
Here here, Gret!!!!!
I completely agree with you and am rather concerned that Eugene missed
the most important lesson this illness can teach you - empathy and
compassion!!! I have been called an inspiration by many and i am proud
of that title. I am also one of the first people that my friends turn
to in times of need, hardship, pain and suffering, because they feel
that i alone can understand and guide them through their troubles.
Indeed the whole point to this and other CED 'support groups' is to do
just that - Support each other: have compassion, sympathy and empathy
for others living with this awful condition. To support one another
during the rough times, in addition to discussing remedies, doctors,
medications, treatments, hopes, dreams and concerns. I have made some
wonderful friends through tribe and have Christina and Nannette to
thank for helping me get through some particularly difficult nights,
when i felt isolated, alone and the pain was almost unbearable. I only
hope that you learn as much from these amazing people as i have.
Take care,
Loz
I completely agree with you and am rather concerned that Eugene missed
the most important lesson this illness can teach you - empathy and
compassion!!! I have been called an inspiration by many and i am proud
of that title. I am also one of the first people that my friends turn
to in times of need, hardship, pain and suffering, because they feel
that i alone can understand and guide them through their troubles.
Indeed the whole point to this and other CED 'support groups' is to do
just that - Support each other: have compassion, sympathy and empathy
for others living with this awful condition. To support one another
during the rough times, in addition to discussing remedies, doctors,
medications, treatments, hopes, dreams and concerns. I have made some
wonderful friends through tribe and have Christina and Nannette to
thank for helping me get through some particularly difficult nights,
when i felt isolated, alone and the pain was almost unbearable. I only
hope that you learn as much from these amazing people as i have.
Take care,
Loz
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