Donna, the feelings of fear I can identify with.  I think a little of that
is normal, but not to be dwelt upon 24/7.  The 2 things I fear most are:
heart attack and having to live with even more pain in the years ahead.
Fortunately, I don't get the "creepy bug crawling" sensation on my legs, but
I've heard others describe it.  Hang in there; you're not losing it yet LOL!
Nanny

You're not crazy, Donna. I get those feelings too. When I was first
diagnosed with CHF, I kept waking up in the night feeling like I
couldn't breathe. I thought I was having a heart attack. I went to my
cardiologist who explained to me that since my arteries were as clear as
 a bell, I was not having a heart attack. What I was experiencing was
the stress of all I was going through. I went to speak with a
psychologist and my "attacks" stopped. But every so often if I wake up
during the night not feeling well, my first thought is that it's my
heart. And it's not...it's generally something I ate that was too spicy :)

I get that a lot since I do not have good circulation in my legs because
of the CHF. Do you have good circulation in your legs?  You can try
massaging your legs with some kind of cream. I find it helps a bit :)

Hugs,
Carole

Absolutely!  Doesn't everyone?  Hehe, just kidding.  I've come to the
conclusion that occasional bouts of "scaredness" are just as normal for all
of us with complex diseases as are bouts of depression.  

No, you're not alone in this at all, and it's a perfectly human and normal
reaction.  What's NOT normal is having diseases and medical conditions that
greatly restrict our lives and the quality of our lives.  I had a
stroke-like episode as well, and the right side of my face, my right
shoulder and side and arm and hand all went numb.  It took six months for
the feelings to gradually returned, and since there was no definitive
evidence of an actual stroke, the doctors eventually learned that it was
the precursor to my full blown aggressive type of RA.

Back to the issue of being scared:  For me it went through phases as the
uncertainty about so many things kept cropping up, like finances, the
ability to remain self-sufficient, that sort of thing.

But like you, the thing that scares me the most is the thought of another
stroke, or having my body become so disabled that I can no longer take care
of myself.  The thought of living the last years of my life in assisted
living housing is abhorrent to me.  I'd rather have a massive stroke or
heart attack and check out quickly!

I know that's awful to hear for some people, but it's something I've
thought a lot about.  For me, now, the priority is "quality" of life, not
longevity.

Which frees me up to enjoy the life I do have, and to shed all that angst
and worry at last.  I have a thorough handle, information-wise, on
everything related to my medical conditions and diseases, and I know what
to expect.  And as each new phase happens I recognize it, adjust my
lifestyle accordingly, and keep on keeping on while hardly missing a beat.
The bouts of depression are brief when they happen, now, as a result of
that inner serenity I've found.

Nope, not going crazy.  Just experiencing completely normal feelings
resulting from dreadful, unrelenting pain and discomfort from diseases and
the side effects from necessary drugs.  The constancy of it all consumes
ones world at times.  It does help to have someone to talk to about it.
But unless they also suffer from some medical condition, it's hard for
normal "healthy" people to really understand and empathize.

Tell you my secret:  It all comes down to -attitude-.  Your attitude, and
your reaction to what's happening to you and your body, makes all the
difference in the world.  You can either let the diseases run your life, or
you can live your life on your terms while accommodating the restrictions
caused by the diseases.

When I saw my RD late last year, he came in the way he usual does, looking
solicitous and concerned, and asked me how I was feeling.  I looked up at
him with a big grin and said: "--I'm-- great!  It's my BODY that's got all
the problems!"  It all boils down to attitude. :)

No, you're not losing it.  I get that feeling in other places, too.  Like
on my face and my scalp.  It feels like thousands of microscopic soldier
ants are crawling around under my skin with their little pincers snipping
at tissue.  It can drive me crazy at times.  Frankly, when I told my RD
about it and that I thought it must be feeling the flares starting when my
immune system goes hyperactive again, sending out all those soldier guys
attacking healthy tissue.....he looked at me like I was nuts!

My SO has Myasthenia Gravis, and similar things happen with him, so I know
it's not uncommon for people with autoimmune diseases to have this type of
symptom.

LOL!  Nutty is GREAT!  It's the only thing that keeps us SANE!!! ;-}

--
DaKittster

"Life is not a journey to the grave with the intention
of arriving safely in a pretty and well preserved body,
but rather to slide in broadside, thoroughly used up,
totaly worn out, and proclaiming: WOW...WHAT A RIDE!!!"

Yes Donna, I get to feeling like that at times also with all that I deal
with in the chronic issues area.

The leg thing sounds like restless leg syndrome to me. I get that too and
the drs have said that is what it is called. I thought it was just pain that
people were talking about when they talked about RLS but the drs said no
that it is that buggy crawling feeling too.

Hope you get to doing better and soon.

#1 this IS a perfectly normal reaction!  I think it is even more normal for
someone who has been through a truly life-threatening & not previously faced
situation, such as your stroke.  Donna, you have strength that amazes us who
know you.  You stay so upbeat and caring and enjoy so much of life despite
all the health and personal issues you've dealt with recently.  It's ok to be
normal and scared once in a while!  <chuckle>

You know, I'm thinking there's probably a stroke survivors group in you area
that would be a good way to connect with others who are dealing with the same
stuff you're ggoing through right now.  I imagine you physical therapists or
doctors could find out more about that for you.  Your reaction sounds normal
enough to me that I think such a group would possibly be more helpful for you
than a single counselor.

Oh, and on the more physical side - as great as your doctors have always
sounded, I think tthey'll be perfectly understanding if you call them, tell
theem you are sick and are wondering if you need closer watching.  Didn't one
office chew you out for not calling?  Just go ahead and call the nurse if you
get sick again and discuss stuff.  Heck, I've only known my doctors a couple
of years, but my PCP has already seen me a couple of times to rule out the
possibility that something truly serious is underlying a virus.  He's been
great about it.  In my experience, good doctors and nurses know the
difference between someone who is *fighting* for his or her health and
someone who is a whining hypochondriac.  Just go ahead and call and stay in
touch with them if you get sick.  That's an order!  We don't want to lose
you!

#2  I agree with SJ, the creepy-crawly feeling sounds very much like restless
leg syndrome.  I do wonder if in your case it might be connected to your
nervous system redesigning ittself after the stroke.  Definitely mention it
to your PT and your docs.  They can probably give you things to try to help
with it.

Fear is normal.  My biggest fear these days is pain related.  Mike helpss me
a lot, but God is my biggest help - from pleas that I don't think I can do
this again (when the pain is really building) to asking for guidance about
calling a doctor for something, prayer and listening have gotten me through a
lot.  So when the fear hits, remember to assk for strength, courage and
guidance.  (I forget this too often at firstt and really tense up over the
pain, when I remember to pray, I relax and cope better.)

sigh..... I see my recent affliction of typing double letters has hit this
reply.  I don't feel like correcting the typos and y'all understand
anyway.........

Donna, I have often had the feeling something was crawling on my legs
without being able to see anything or wipe off anything.  Like my daddy, I
have never been one to worry about things, so I just pray that the Lord will
take me through whatever comes (like heart problems, a broken ankle, and
dislocated hips!).
Gwen

Yup - regularly.  Then I pick myself up and dust myself off.  Donna - I have
pity parties but unlike what some people do I schedule them.  I know they
are coming (yesterday was one).  I make sure I have nothing happening that
day - cry if I need to, sleep, stay in pajamas and generally feel sorry for
myself.  I always schedule something the next day to get myself out of them.
Today was quilting day with my friends even though it was tough to get out
of bed.

I think it is healthy to be scared so long as you don't let it grip you and
take life out of you.  If you kept looking for something to happen and kept
waiting for it, well eventually it would.  You would miss out on life.  On
the otherhand if you are scared and aware but go on with life in a positive
way, then you are aware if it happens and can deal with it.  For example you
had the stroke.  You know the symptoms now but don't go looking for them.
Look after yourself doing what needs to be done to avoid having another one,
know the signs as you do now but keep doing things.  Keep reaching out just
that little bit more for life.  If for example Carole knows she can't go
traipsing out in the wild looking for pictures to take on her camera she can
open her windows and take pictures from her deck, make them black and white,
sepia, twist them, manipulate them on the computer etc.  A whole show from
where she is.  What a wonderful study and a way to turn a negative into a
positive.

A counselor is good but sometimes you know the answers inside.  It is a
normal reaction but how you deal with it can set the tone for your life.  I
know you can turn it into a positive thing - that is the kind of person you
are.  It is good to be scared!  And you dealt with it by talking to us.  Now
move on until the scared feeling happens again and talk to us again.  Damn
Donna - we have reason to be scared you and I.  How we deal with it though
is the difference between giving up and being us!  You and I are not going
to give up - we still have options (okay not as many as we had before but
still options.)

Okay off my pedestal.  Sorry but this is something I deal with all the time
and I think I deal with it well.  I know most here can as well and I
especially know you can.  You can sound off to me all you need to though - I
have people I sound off to - like to all of you.  It is okay to be scared -
more than okay!!!!

A gentle big hug.  Have a pity day then schedule something special to get
over it.  Like a walk in the sunshine (I know it is there somewhere).

Kelly

YES.. when I was first dignosed I was working for a cardiologist and I took
a lady back for her appointment and she had major deformities of her hands
and feet. I was writing her info in her chart and saw that she was on the
exact same mads as me so I glanced at her dignoses and it was RA. I went
home that night crying all the way home, I was thinking will I look like
that will my body do the same thing? My hands and feet are starting to curve
and change shape (5years after dignoses). I think I will be ok I am not
sure. My BP is getting harder to control and I do and collect water on my
heart and lungs at times.. I take high power water pills to controll this on
top of my bp meds that have a water pill in it. I am just not sure what the
future holds for me so I am living everyday like it was my last. I never
leave without letting my family klnow that I love them..we always say we
love each other when we leave even if it is just to the store. I am going to
live love and laugh to the best of my ability as long as I can and love
every minute that I breathe.
Donna that was a good honest question that you asked and it helped me to
think a little more about this.