redneck up date

[Guest guest]

well I have posted a bit of late but thought it was time to also let ya all know

whats what here. went to the RA doc the other day and for the last three times

my blood work has been slipping in a few areas . one I do understand as I went

threw it years ago at the start of all this stills stuff and that is my platelet

count. well normal for me is already low but it has slip steadily now for the

last 6 month plus and now if it keeps up the next slip I may be in danger of

becoming a bleeder so now its off to a hematologist / oncologist again but now

and sorry I did not get the name of it but another marker is headed sky high .

all I know is it is to do with my liver or my bones and this one has always been

normal but again has been climbing over the months . I know I am fairing nothing

big like the onset thankfully but flaring no less. of corse stress levels are a

bit high here before all this and this has just added to it . as along with all

of this that

dang barrettes thing (esophagus problem I have already) is really doing things

as it is now also causing a lot of pain and swelling in my gut. o well so now

just waiting for my PC and RA doctors to call with the blood docs appointment

time and day all I know is my RA wants it asap and is making the calls her self

to see that that happens. Ya know this stills stuff is not fun but one thing we

can all say its never the same old crap as its always some thing new with us LOL

hugs all

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

[Guest guest]

Marty,

Unfortunately, platelet counts are something I have way too much experience

with: a college best friend with thrombocytopenia purpura, my father with

leukemia and my brother with aplastic anemia (a lovely autoimmune disease that

causes your body to destroy your platelets). My brother's platelets were so low

(1,000) that he wasn't allowed to shave with anything but an electric razor for

fear of nicking himself and bleeding to death. My father actually did bleed to

death.

Normal platelets are anywhere from 150,000 to 350,000. Although docs will worry

(with decent reasons) if your platelet count drops below 150,000, you shouldn't

be in danger of bleeding problems yet. There's a huge difference between

platelets below normal and platelets at the danger level. Certainly your doc

has a reason to watch the situation, but I wanted to try and set your mind at

ease a bit.

The level at which there's a real concern about bleeding uncontrollably is much

lower than people realize. Here's an excerpt from the Mercke Manual

(http://www.merck.com/pubs/mmanual_ha/sec3/ch49/ch49c.html):

Usually, the platelet count is about 150,000 to 350,000 platelets in a

microliter of blood. In people with a low platelet count, bleeding is more

likely to occur, even after a slight injury. When the platelet count is very low

(below 20,000), massive bleeding may occur even when there is no injury.

Bleeding may be life threatening.

Me again: So try not to worry too much about this. You've probably got a good

75,000 or so platelets to drop before you're in any danger. You may find that

you do bruise a bit more than before, but it's just ugly, not dangerous. Hope

this helps.

[Guest guest]

 thanks for the info I may as well come clean here normal for me has been only

90,000 then it dropped to the 70,000 then to the 50,00 and now its in the 30,000

and headed down still so yes there is a worry. I have gone threw it before and

in fact it was found out after an ER trip when the Cops showed up at the house I

was moving to. I had passed out in the back of the truck with the very first box

and thats why I was in the ER they sent me home and it was hours later the cops

showed up . they tryed to call but the house phone was already off and we did

not have cell phones . they were to stop me from moving because if I got hurt it

could mean my life I was down to less then 20,000 then and yes I do have trouble

cloting to this day a little boo boo bleeds like I am a stuck pig (oink oink )

any way that was back about 1998 before I had my big flair and was DX with

stills.

 I knew some thing was up as for the last month or so ever time I give my self a

MXT shoot they bleed and it take a bit to get them to stop. I have to put

pressure on them for a few just like when you have blood drawn and I know that

is not normal as there small needles and there in fatty areas ( my spare tire

thingy) I also now bruse big time from the same shots some thing I normaly never

do as it normaly take one hell of a hit for me to bruse

   Now do I worry about it nope not at all but I do think about it now and then

and I am a bit carefull about what I do well not realy but I do try to watch my

self closer and I have stopped playing with knifes right now LOL.

the redneck

Marty G.

________________________________

To: Stillsdisease

Sent: Wed, April 14, 2010 9:01:38 AM

Subject: Re: redneck up date

 

Marty,

Unfortunately, platelet counts are something I have way too much experience

......You've probably got a good 75,000 or so platelets to drop before you're in

any danger. You may find that you do bruise a bit more than before, but it's

just ugly, not dangerous. Hope this helps.

[Guest guest]

Marty

I'm sorry you are going thru all of this! This does stink, but of course,

you never loose your sense of humor. Big hug to you my friend. Please

keep us posted on those labs.

Will you bee seeing a hemo/onc soon? or only if the platelets slip from

where they are?

I myself had a decent day yesterday, but today very weak again... my

hubby is going to have a nervous breakdown!!!

-Jo

In a message dated 4/13/2010 9:19:30 P.M. Eastern Daylight Time,

stills_stinks@... writes:

Ya know this stills stuff is not fun but one thing we can all say its

never the same old crap as its always some thing new with us LOL

[Guest guest]

Jo and all

I will be seeing a hemo/onc as soon as they can get me in . as the counts are

right on the verge of 20,00 right now in a second blood draw / lab earlier this

week and now I have to do it again next week as they want to keep a closer eye

on things now that I am at the line or what my RA is calling the line of action.

this time they slipped 13,000 in about one week so they are now pushing the HMO

and each other to get me in . I have been now told not to shave with razors and

only use the dang elect. buzzer kind . Hmmm may be its time this redneck grew

more then a goatee and gets one of them hill billy long breads to go with that

new corn cob country gentleman pipe. LOL. o well as I said been there done that

and no I did not even get a dang tee shirt that time but I did get some nick

black and blue spots will they count?.

  the one thing I do hate in all of this is when ya get hit with some extra

stress as if we d not already have more then our share of that .o well poor as

all get out in  money but richer then any one has a right to be in stress. 

but I will keep ya all up to date on what the low down after I find out that is

.. I can say right about now I would love to be a hermit instead of a redneck

that way I could just crawl into a cave and hide away for a time as right now

life is not to nice for me be it at home my extended family and now this I just

want to hide and get out of line and let somebody other be first in line for a

time .

hugs all 

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

[Guest guest]

Dearest Marty,

let's go out and find some people to stand in line for a while! I agree you've

had enough and it's time to hide. I've been doing that for a couple of weeks now

and it helps sometimes.

Lots of hugs,

Re: redneck up date

I could just crawl into a cave and hide away for a time as right now life is

not to nice for me be it at home my extended family and now this I just want to

hide and get out of line and let somebody other be first in line for a time .

hugs all

the redneck

Marty G.

____________________________________________________________

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[Guest guest]

In a message dated 4/17/2010 12:53:23 A.M. Eastern Daylight Time,

stills_stinks@... writes:

would love to be a hermit instead of a redneck that way I could just crawl

into a cave and hide away for a time as right now life is not to nice for

me be it at home my extended family and now this I just want to hide and

get out of line and let somebody other be first in line for a time .

[Guest guest]

Marty, I'm so scared for you too...so I'll take care of the worrying...you

concentrate on getting better. A nice guy like you deserves a break...so cross

fingers it'll be your turn. You're in my prayers dude.

Redneck up date

Hi ya all

well time to up date ya all again with what little I know

saw the new doctor and lets say he feels some thing is going on out side of

my stills .insert me scared here not a good picture a scared redneck ) any hoot

they have me going back for a neck cat scan because of the lumps in my neck . Ya

I knew they were there showed up about a year ago and have been getting bigger

slowly and now are also causing some pain now and then . He also thinks it may

be related to my mouth ulcer and the new white growths on my roof and deep back

throat area ( no its not thrush darn it ) I also have to go back for a bone

marrow aspiration ( biopsy) . they also pulled 9 vials of blood for testing when

I first got there and then later decided to get some more as they added some

more test so in all over 13 vials were taken . then the for me scary news of the

whole day as if the rest was already not enough I was told I have an enlarged

prostrate . now I know that could be nothing but and this is may be were my dad

was right in

saying " you tend to barrow trouble " but knowing my family history that was

not a good thing to here as no one on my moms side ever have that problem and on

my dads side well a lot of them did and all of them are no longer here and yes

they all ended up with the bad C word there including my dads father my dad and

two of his brothers so to say I am a bit freaked out right now is an under

statement to say the lest. I am hoping that at lest this one time in my life

that a wonder drug will work or in the worst case nothing more then a rooto

rooter job well have to be done . (Hey ya women have talked about all that girl

junk so time us guys got even here . any hoot I again knew some thing was up as

lets just say the commercials hit on just about every aspect I have been feeling

and then not being able to go a lot when you need to because of kidney stones is

like a worse devils curse any one could do to some one . see it is now a week

and I still got that

dang thing trying to come out on top of every thing and it still has not seen

the light of day so that it can go down the drain .

any way some time In June I will know more and so again like we all love so

much doing I sit and wait for more testing and then am given to much time for

this tiny mind of mine to wonder around thinking on its own tell it is told what

is what

thanks for letting me also vent a bit

hugs to ya all

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you

learn.--- C.S.