Past Topic of the Month
The topic is: "How has RSD forced you to overcome your fears?"
Julie:
RSD has changed me in numerous ways. My life seems more jumbled up now,
but being a teenager does that too:) One of my fears was being left
alone and not being able to help myself. I've always been fiercely
independent, but RSD has changed that. Now I'm willing to accept help
for what use to be the simplest tasks. Another fear I have had is
trying to fit in-just like any other "normal" person. People are afraid
to admit their shortcomings or medical problems for fear of rejection.
Throughout this year I realized who were my real friends because they
wouldn't let me fall. The high school Theatre has helped to give me a
voice. Theatre is like a family to me partly because of the many
strenuous hours spent together. Before every show we have group prayer.
This is a time for people to thank others, read special items, or share
events that are shaping their lives. I found that I was able to tell
people what was going on with my ever changing medical problems. They
did more then just listened. Arms reached out to hug me or to hold me
when the world was falling apart. They helped me to realize that this
confusing disease isn't an untamable monster. Many other people began to
step forward and talked about the unspoken diseases that changed their
lives. Slowly, I have regained some semblance to how I use to be. I've
slackened my pace, and now I take more time to enjoy my surroundings. I
just have one last thought..."Angels are friends sent down to help us on
our way".
By Julie
Laurie: There are a lot of things in my short life that have made me grow up a little
faster, mature a little faster, and accept things as they come. Probably the
most prominent one is getting RSD. How has it forced me to overcome my fears? I really don't know. I've been thinking about this for about a week and a
half, and I really can't come up with anything earthshattering. Rather than
making me OVERCOME my fears, it's made me deal with them. But, I don't think
that I've ever overcome them..even to this day, and I've had RSD over 4 and a
half years. I think when I got RSD I wasn't as concerned about having to deal
with the physical pain, as I was the emotional pain that came with it. My fear
was always that I would break down..and not be able to withstand the pain
anymore, giving into a disease that is just a small little fraction of my
exisistence. If RSD has taught me to overcome anything, it's ignorance. It has
taught me that life isn't all daisys and happy thoughts...it isn't all
sadness either. It just IS. And we should be happy to be here..and I'll be
honest- I don't think like that all the time- but, I try to. 100% of my days
I feel like I'm on fire..but, I also feel like I should be grateful for
getting a disease which has made me a hell of a lot STRONGER- Love yas all-
Laurie
Tasha:
Ok the topic is RSD but seeing i dont have RSD i'll tell you about
chronic pain .
Ok i have chronic pain i had scoliosis when i was little and i had to
have a operation so um i think that i'm not scared to have operations
anymore and i'm not scared to have pain and be in and out of hositpal .
Rhe way it helped was having a 50 50 chance of dieing and the other
half of living so i guess thatr scared me into living and fighting for
my life instead of giving up and not trying so i guess that helped me
alot cause i was always scared to go and have operations i was always
scared i wouldn't make it or i would be in a coma .
and now i finally got my doc to realize i had chronic pain and that i
needed pain mangement it took him a while to realize i was in aoin and
that i needed something.
so i think that helped a lot too.
By Tasha
Rainie:
I have had to overcome my fear of many things due to the RSD. I have been
through many frightening treatments throughout the span of my RSD. I have
been through PT about 6 times. I was at one point doing stellite ganglion
blocks, which were very scary for me. You see, I had never had to have an IV
up until those shots, which they put me under for. There are many medicines I
have taken, not knowing how I would feel afterwards, which was scary for me.
I have struggled in school, missing too much these past two years. I used to
get straight A's no problem, until I got sick and started missing school. Not
being in control of my life has been one of the biggest challenges for me
these past two years. Speaking up has always been hard for me, and I have had
to open up for the sake of my health with the RSD. One fear that doesn't go
away is my fear of shots. Both trips I've made to Dr. Hooshmand, I have
"freaked out" when I realized it was time for those scary, yet beneficial
shots. These are just a couple of fears I have or have tried to overcome.
RSD is scary esp. when you're just a kid.
Welp, thats my teen corner post for this week. I hope you are all having a
low pain summer. Also, I just thought I would share with you a little
something. Wednesday, July 8 is my two year mark in my battle with RSD.
Love,
Rainie, 14
Betsy:
Well, when I thought up this topic for Teen Corner I was in great
need of support: I needed to know that others were terrified of
procedures and treatments too, and what was a better way than to make
the long-awaited topic about bravery? So I sent out the e-mails, all
the time dreading my up-coming stellate ganglion block. I wanted to
know that my friends and fellow Teen Corner members had lived through
treatments too...I wanted to know that fear of needles gets better once
you get used to them.
RSD has made me face my fear of needles, of scary treatments, even
of moving an extremely painful limb. Yesterday I was stuck with a total
of four needles, and I didn't even cry. I got a little hysterical when
it took three tries and two blown veins to get an IV in my arm...but I
sat still and I let them, because I knew that I needed the needles...and
that my chances of recovering were much higher with needles than
without!
As it went, the block didn't provide total pain relief, and it wore
off, leaving me in the same amount of pain I was in before the block.
But those two hours, when my arm was nice and warm WITHOUT the burning
feeling were wonderful. I never could have experienced them without the
needles! Although the IV was completely useless...we wanted to just
leave it in for the next block, LOL!
More than RSD has made me conquer my fears, it has created new
things to be scared of. Before RSD I was never an athlete...now I can't
be in a room where people are throwing balls. Crowds scare me...social
occasions where I'm forced to shake hands are horrible! I thought I had
my future all planned out, but I know now that nothing can be definate.
In conclusion, I believe that RSD creates more fears than it forces
one to conquer...and that I'd rather be scared of needles that of being
tapped on the arm!
-Betsy
Meribeth:
Hi! My name is Meribeth. I have had RSD now for 8 months which isn't
too long but this isn't the 1st time either. It didn't just hit me once
but twice.......oh what a lovely surprise, it seems to have that effect
on all of us it strikes! We all seem too know about those silent killers
but what about this, is it the silent agony or better yet the destroyer?
So about fears, well I guess I should acknowledge the ones before my
RSD. They were so little, oh such as if I forgot my homework or even to
call someone, I never had anything ot fear besides my DAD....... under
that Marine cover though he's one big softy....LOL! I'm sure he'll
agree, yeah right. I never feared this though and now I do, especially
at this point in time, perfect timing I guess you could say! Oh just
thinking about it scares me, the nights I won't be able to get a wink of
sleep and most of all the day I'll be ready to give up which hasn't
happened yet....Thank God! I doubt I have over come my fears quite yet
but better then that I have learned to fact them head on. Mostly this
thing (as I call it, the it) has made me stronger! My fears will always
be here........unfortunatley I can't denie that one, someday though you
wait and see......
-Meribeth
Jen:
Aside from the innumerable nasty implications of RSD on my life, this
disease has also had a bit of a positive impact as well in some areas
(amazingly). Overcoming some of my fears is one of them. hmm..wow, where
to begin, where to begin......
The treatment of RSD can involve some invasive, rather frightening &
intimidating procedures, especially when you're only a kid. My docs &
parents have helped to make everything a little less scary, but it's not
exactly easy nonetheless. Just the explanation of the disease itself was
pretty intimidating, my parents weren't even there when i got hurt & went
through my first couple big procedures, just my friends & teammates (who
really were great). The first treatment I received involved taking very
strong pain meds, they really threw me for a loop, I couldn't see, think or
walk straight, whoa... and what's worse, if I thought that was scary, the
worst was yet to come. A procedure called a nerve block followed the meds,
I just knew when they brought me to a room cluttered with all sorts of
monitors, that I wasn't "in Kansas anymore." All sorts of docs & nurses
were in there, it was right after I got hurt, they had to cut my shirt
because I was in too much pain to get it off. This preceded them
attaching me to those monitors, an IV, the betadine, then... the big
needle, right into my armpit, i mean they sedated me, but it was just so
scary, they allowed my team trainer who was a good friend in there with me
& all the nurses & docs were so kind, it was just that I was so
terrified...but I knew that it had to be done - within minutes my RSD arm
was numb, the pain had receded & for the first time in 48 hours I was
comfortable. Since that day, I have had over 80 nerve blocks performed & I
have overcome my fear of needles & all that goes along with those blocks,
although one whiff of betadine & i still shudder. However, my docs are
really great & try to make things light so that I relax, I mean I tend to
be more stoic rather than dramatic, so I never fight it, I just let them do
it because I know that it has to be done, & I trust their judgement as they
always discuss everything they are going to do with both myself & my
parents first.
Since this RSD began I have also had 4 surgeries, & will have yet another
next week. Going under the knife can be a horrific experience for anyone.
I mean the OR is quite intimidating, those big bright lights, all the docs
& nurses all gowned, gloved & masked, all the monitors, the tubes, tools,
everything. Fortunately, the docs that have been with me in there talked
with me to get me to relax while they administered the meds that knocked me
out so most is a blur. Surgery is something you never stop being afraid
of, but at least I am able get myself into that OR without totally feeling
like I am going to puke, well sorta. It's just not AS bad as it was the
first time I went in there. I have also learned that there are ways to
adjust the meds so I don't feel so lousy, so I don't have to be terrified
to try a new one.
There is also the variable of the unknown. Nobody has a fully confident
answer about why RSD occurs, the correct treatments, what will make it go
away, and when, if @ all. That's still the most terrifying thing about it.
However, this past January, I pushed myself to return to college for
Spring Semester '98. Best of all I DID IT - YaY! Whoohoo!!! :) I have
only actually missed 1 1/2 semesters, but neither my docs nor my parents
were too confident that I'd be able to finish the semester out, however I
proved them all wrong, I did it, & passed with flying colors. Better
still, my friends & athletic team welcomed me with open arms. If I put my
mind to something, I can do it. I have always been confident from day 1 of
life with RSD that I was going to kick this thing. Overcoming this
obstacle has only fueled my pursuit to overcome this beast. Finishing out
that college semester has been a comfort for me in that, that one terrible
fear that has burned in my mind for the past 1 1/2 years, that I will
always be a prisoner to RSD, will not be there much longer. It is possible
to conquer this RSD, I have been objective about it to this day, it's going
to go away, I'm going to beat this awful disease. I have always known that
I will, all I have to do is push just a little harder, & I will suceed.
I have experienced a lot of complications throughout my treatment, in
actuality, we never quite know what to expect of me...I keep everyone on
their toes :o (not that this is a good thing). However, if I've made it
this far, I'm going to keep on truckin' until I beat this thing. If
anything, it has turned me into a more positive person, I've learned that
if I remain optimistic about the whole thing, it's not so scary after all.
Later AlliGaToRs - Jen :~b
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