Re: Cross Post... it will be my last one

[Guest guest]

You are welcome here, Anne. What else is the group for and I will call you

anytime you need to talk. Again, Welcome. Cathie in Ct

> Anne wrote:

> I'll be leaving most or all the groups so I " don't scare anyone else " . I am

not mad, just heartbroken that I'm not welcome anywhere anymore.

[Guest guest]

Anne,

You certainly do NOT scare me. I hope you decide to stay and I can get to know

you better.

Sometimes I am unable to respond to a post because of my health at the moment or

I feel I have nothing to add to a request for info.

I understand what it is to have docs who react poorly, rudely, or ignorantly to

my case history, it is (as most of us here) quite extensive and bizarre.

As a health care provider (now a disabled chiropractor,) I also know what is

like to not have a clue what is going on with a patient, however, that is no

justification for some of the reactions I (and others on this group) have been

subjected to.

I hope this will become a safe haven for you.

With empathy and sympathy,

Vivien

Anne R. wrote:

It was brought to my attention that I scare people when I write in to the groups

I belong to at yahoo groups.   So I am just checking in with every group I

belong to now to find out if it holds true for everyone or just a select few. 

[Guest guest]

Anne R wrote:

> It was brought to my attention that I scare people when I write in to the

groups I belong to at yahoo groups. So I am just checking in with every group

I belong to now to find out if it holds true for everyone or just a select few.

Hi Anne

I noticed that you post some of your messages to several groups at a

time. Perhaps you would have a closer relationship with group members

if you wrote your thoughts to one group at a time. I know that it is

harder to form bonds with people in a group, if they are aware that the

same message is going to a bunch of different groups or even to

individuals and groups.

Just a thought.

As for this bunch of people - as one of the other moderators wrote - the

Chronic Pain Group members don't scare easily. :-)

Lyndi

Moderator

[Guest guest]

You've never scared or bothered me with any of your posts. However, I'm

living Dante's Inferno (well, I guess it's Steve's Inferno; my own personal

hell), so I may not be the best judge.

I'd be more offended if you (or anyone else) stopped posting.

Steve M in PA

[Guest guest]

Annie, please don't leave. You have not said anything here that I would say it

scary. We all have struggles and we understand. Everyone needs a support

group. I would happy to be a friend on facebook. I don't get on everyday, but

you can leave me a message. If you would like to connect on facebook send me a

request to Tami Brotosky Bethlehem, Pa.

You are a paramedic? Cool! I volunteer as an EMT.

I hope you stay with this group. Lots of gentle hugs, Tami

[Guest guest]

The moderator who said that chronic pain people don't scare easily sure has it

right.

susie

[Guest guest]

Annie,

I wish you wouldn't leave as people here are very kind and care and one member

helped me so much when I first joined and had gone through disability assessment

etc and what she assisted me saved me a lot. The moderators are great also

giving of their time.

Being in a pain group, people in pain sometimes feel so bad they don't post for

awhile. I believe with you medical background you could assist members here with

your exprience also.

This is the best group I have been in and I hope you stay. Bennie

[Guest guest]

wrote:

> I'd be more offended if you (or anyone else) stopped posting.

,

I agree that our group, we vent as we do not want to worry our families etc and

it allows us to get resources and know there are others that understand we are

human and we vent it is not against anyone and I respect what is posted. I hope

you stay. Bennie

[Guest guest]

Don't worry Bennie, I am staying. I left the 2 groups that said all those

lovely things about me. Funny thing is, one of the groups is for people with

osteonecrosis/avascular necrosis which is what I have and is causing me all this

pain and such.

off to take a nap, have a sick child at home so we are all quite crabby here

today.

Anne

> Bennie wrote:

> This is the best group I have been in and I hope you stay.

[Guest guest]

>Anne wrote:

>It was brought to my attention that I scare people when I write in to the

groups I belong to at yahoo groups. So I am just checking in with every group

I belong to now to find out if it holds true for everyone or just a select few.

If we are friends on Facebook and I am a bother there too, please feel free to

unfriend me or tell me about it and I'll do it for you.

>I have a lot of stuff medically going on in my life all at once usually if not

to me, with my Mom (who has tried her darnedest to die on me since July 2011,

but every time I have arrived just in time to stop that from happening.) It's

the inbred Paramedic in me I think.

> you don't want to be friends with me because " I may scare you " too. I'll

understand. I am getting used to being abandoned when I mention anything about

how scared I am by this whole AVN (avascular necrosis meaning that my bones are

dying from lack of oxygen rich blood is the easiest way to explain it I guess)

thing. All brought on my steroids and genetics. just like how I became

diabetic and on a pump. steroids and genetics.

Anne,

I love that our Moderator put " we are hard to scare off " , it is true. Some of

post daily or more than others and I am bed bound and can " t get up, I am on the

computer.

So greatly put by our moderators, we are an unusual group as our moderators

allow us to vent and try to have some humor with our pain journey. Sometimes if

you don't feel us answering we are dealing with our Doctors, family,financials,

health coverage, or just bed bound and do feel well enough to post. I have been

a member here for over five years (?) One time a moderator kidded me and I was

on a pity party and said I would leave but was asked to stay and so I did.

Please do not EVER take offense to anything said here, the members here care for

each other and please allow us to get to know you and you can know us.

I was in the medical field for over thirty years and there are many Nurses here

and others who do Medical research. We are not Doctors but some of us post links

and our Moderators are great about assessing them. Some of us have strong

personalities (Me) and anything I say is out of love. We are caregivers and the

great members here would come over and give you a hug or sit with you but we

have to depend on the words on a computer that sometimes can appear strong like

members will say ,Go to the Doctor now if you post something that we feel you

are in Danger and you are asking for assistance.

The moderators take their position seriously and do make sure that the

information members provide is correct and I try to say : My experience and put

a link if I state something and we also do off topics for humor.

I remember one as I have always hated trying to explain my pain, I mean I told

one Doctor put a clothes on your private parts and walk and sit with that all

day about my pinched nerve and that my fibromylagia feels like I have beat by a

baseball bat all over or a porcupine with the needles going inside and sticking

me all over.

I have had Nurses and medical personnel question my senserity of my pain until

my blood pressure is taken and it has been as high as 230/105. I take a timed

medication and they look at my milligram of my morphine is so HIGH but it over a

24 hour period and comes out to under 10 mg of Morphine an hour and the PDR

states up to 1600 mg of Morphine a 24 hour period

I had to show my family a picture of my MRI and I have over six screws that are

in my back and cages replaced discs and vertebrae that were rubbing bone on bone

and I had to deal with this for seven years and a Doctor that didn't believe I

was in pain and he finally did a discogram (which protocol states that after

three spinal injections don't work it should be done to assess disc disease,

mine had fissures all in them and were just gone. He was red and embarrassed

(the jerk) and all he could say to me was " Your prognosis is poor and I guess

your are hurting " .

I walked out of there and that is the first time I saw my husband cry. I had

dragged myself around thinking I did not have a problem but the pain was making

my blood pressure elevated all the time and if a pain patients pain is not

controlled, other body systems suffer (as you know).

This is the reason I believe pain journals are important and my previous Doctor

required them so that he could assess his patients progress and this protected

him also. He never tested urine and he even gave me a extra prescription for

night time and he said if you don't take it, keep it as pain patients need a

thirty day supply if they ever get stuck without medication.

With your background you will be such an addition here and when people don't

post, I worry about their condition. We are of different backgrounds and some

might say, " I will pray for you " and if you are not of that background, know

that means well to you. He was a great man and he titered my medication to the

right dosage a provided articles and resources every month and educated his

patients about legislature laws pertaining to pain patients. He also co founded

the National Foundation for Pain and people from overseas and states thousands

of miles came in every month

and I drove three hours every month to see him.

He passed away last year and he will sorely be missed so I make sure I am in a

multi physician office in case a Doctor I am seeing has a problem so I pee in a

cup every month like a criminal and drug seeker and go in feel like I am begging

to have help for my pain and just wonder if the Doctors really care. I have

cried in my prior Doctors office before because I was concerned about this label

and he said " Drug seekers are not concerned about the amount of meds they take

or how they are viewed and cry " He did get on me for over doing things and said

" I don't get your better for you mess it up " He said that pain patients strive

to be like they were before and he was a pain psychiatrist.

I am glad you mentioned steroids as they are great for what they do and some

members have to take them daily I have had a problem with them as they did

multiple (over 20) spinal procedures as the pain management Doctors that are

interventional require this in order to give you medication therapy. When one of

my last procedures, I was in a gown waiting my turn and after three hours the

Doctor stepped in with my chart and looked at it and said, " We can't do this as

last time they could not get the needle through your scar tissue " . That is when

I got angry and anger makes me do something but I have had to make sure I don;t

alienate or make it where I can't get the care I need . There are members here

with brain disorders and experiences.

Mine is a spinal disorder and I had an auto accident after my spine surgery and

get a sacral iliac injury. My pain will never go away and I wake up to and would

like one day that it is gone for one hour. The only time I have had this is when

I have had a pre-op shot or versed but I cannot have this forever. I send you

good thoughts and welcome to the group. I hope you get the care you need.

Let us know how you are.

Bennie

[Guest guest]

> Don't worry Bennie, I am staying. I left the 2 groups that said all those

lovely things about me. Funny thing is, one of the groups is for people with

osteonecrosis/avascular necrosis which is what I have and is causing me all this

pain and such.

>

> off to take a nap, have a sick child at home so we are all quite crabby here

today.

>

> Anne

>

>> Bennie wrote:

>> This is the best group I have been in and I hope you stay.

Annie,

I have had that experience here, one new member took offense because she had

posted wanting feedback and when I said you need to go to the Doctor now and

commented on how her Doctor treated her because she was posted she had been

treated wrong.

Unfortunately, this post slipped because she made some hateful remarks that I

was bossy, and had no right to tell her what to do. Now e-mail is a hard

communication because you cannot see the person and this group is good that if

you disagree, you can state, I disagree and state you point issue orientate.

Just like you, when you go thru medical training and have learned some things

and know some resources , you want to share them. There is many things I do not

know and will always try to say, boy I agree with you.

The point is, I got personal e mails from wonderful members here thanking me and

asking me to stay. Sometimes I feel I post too much and tend to comment on

everything but there is much of the time I am bed bound and this makes me feel I

can do something.

I admire your stamina and am interested in your progress and when you have time,

share how you got this. I hope less pain and as caregivers , we tend not to take

care of ourselves.

Thanks for staying. It is their loss to those groups and their immaturity for

not seeing you were sharing, they could have taken an interest in your

condition. Bernie Segal, a Doctor who writes positive reinforcement techniques

and overcame cancer writes in his book on survivorship that the first thing you

do to survive a condition is get rid of all toxic relationships and environments

so you can concentrate on you. It is hard to do sometimes but it an attitude to

be learned so we can use our energy on overcoming pain.

Take care and glad you are here. Bennie