what do I do?

[Guest guest]

My husband is in the Army so this maybe a little different. He told

his first line supervisor who told his company commander. His CO is a

great guy. He called Jeff in and talked to him one on one. The next

day was the shot. The CO came up to my husband and asked him if he was

going to take it. When my husband said no the CO ordered him. My

husband said no and the CO told him to go to his office where he was

written a counseling statement. Good luck and keep your head high.

--- trinitybarnes@... wrote:

> From: trinitybarnes@...

>

> I am currently active-duty in the Air Force.

> From all that I have read so far about the Anthrax

> vaccine I am starting to feel very upset about it.

> I am do to start receiving the innoculation next

> month and I am very worried. What are the proper

> procedures that I should take in order to refuse

> the vaccine? Can someone help? Thanks.

>

[Guest guest]

mike this sounds like my ear. i had ear infections all my life in my right ear until i seen a ent doc and cat scan showed a c-toma, so my thinking is that i must of had c-toma for a long time and was just misdiagnosed for years. i bet this is a common problem with people and there family doc not realizing that something more serious is going on in the ear. my last surgrey was this past december and its now almost febuary and already i feel something going on in my ear, like something stuck in there. GUESS WHAT I BET ITS C-TOMA COMING BACK. doc said i would need on more surgrey in 6 months. how many before its over..lol

"severedcircle <mike@...>" <mike@...> wrote:

I have yet to schedule my surgery to remove Cholesteatoma from my right ear. I have a few concerns. First off, I have been diagnosed with inner ear infections for years. I had tubes put in at a very early age. Also a few years ago I was having wax removed from my ears on a regular bases, done by my regular doctor. Then once I started to go to a specialist about 2 years ago, he no longer removed wax from my ears, but instead told me each time I had hearing loss that it was due to inner ear infections and prescribed me antibiotics to correct the problem. Now at age 28, after a simple CAT scan Ive all the sudden been diagnosed with a much more serious problem, Cholesteatoma. Im not sure if I should get a second opinion before going ahead with the procedure? Are their any new types of procedures out there to remove Cholesteatoma. Also since being diagnosed my hearing has been improving from time to time and I can hear and feel movement in the ear. Is this normal with Cholesteatoma or could I possibly just have major wax build up in the ear? Why would I have wax problems, then suddenly no wax but something much more serious?

[Guest guest]

Hi there!

I'm no doctor, but about a month after my surgery, I was experiencing

the same kind of sensation I think you are describing. I called my

doctor's office and they told me not to worry and that it was probably

my body trying to fight off the sutures. (because my body looked at it

as something " foreign " )

You should still call your doctor and explain what's going on. I just

thought I would give my opinion.

I sincerely hope you feel better real soon.

On a side note, I'm so glad that I've found this message board! I've

been looking for something like this for over a year now!

- , Diagnosed in March 2004

Had Heller in July 2004

[Guest guest]

I had a dull ache also. It developed about 3 months after surgery and

lasted for several months. It felt similar to ovulating (sorry guys).

It didn't totally distract me when I was busy but when I was quiet I

would think that it was getting really annoying. It didn't ever throb

but was just always there. The ache seemed to be in the sternum area,

which is I assume about where the surgery is.

It also felt somewhat like the very beginning of a spasm, that 15

seconds or so where you feel the pain coming and run for water before

it turns into a real spasm. At least before surgery. My spasms after

surgery aren't as fast coming.

I take quite a few Excedrin Migraine pills so I could have been masking

the pain a lot also. At night I sometimes took Motrin if the ache

wouldn't go away.

If you don't have a fever I wouldn't worry quite so much. I still find

it more comfortable to not go long without food. Being hungry seems to

trigger spasms. Maybe another reason for " our " weight issues after

surgery?

Sandy in So Cal.

> Hello

>

> Me again, as you may or may not remember i had surgery 3 and a half

> weeks ago (lap myotomy with partial wrap). I woke up two days ago

with

> a dull ache between my oesophagus and stomach area. It is now day 3

> and it comes and go's. I am baffled, I dont know what I have done

> wrong. I have been eating soft foods, I must say that the night

before

> I probably overate, but I have done that previously. I dont know what

> to do. I did have nausea, that seems to have gone but now I have this

> ache. Has anybody had this problem. It is Sunday now so I cant call

my

> doctor, what should I do?

>

> Biljana

[Guest guest]

I would try for a medical leave if possible. Worrying about

stuff is only going to make your symptoms worse. If you are not able to perform

your job then I would take some time off if you can. Plus I would get with the

doctor and make sure of when all the tests and stuff are going to be complete,

due to the fact that most of us NEED to work!!!!

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of cthymunroe

Sent: Tuesday, May 01, 2007 11:52 AM

achalasia

Subject: What do I do?

It seems like I am having the worst week of my

life. Last Monday I

was

told I was having surgery tomorrow, Friday they told me it was

canceled, Yesterday they told me it was on, Today they said it was

canceled. My doctors want me to go to U of M and repeat all of my test

again with out anestetic. I don't know how much longer I can take this.

I am well aware that they want to be sure 100% that the surgery will be

the right thing for me but what I am I supposed to do when I can't eat?

I am weak and hungery. My work is very supportive but at the same time

I just can't do my job. I am a retail manager at a very aggresive

store. If I don't make my numbers then it sticks with me until the end

of the season. How can I do my job if I can't stop thinking of my

personal life. I can't stop crying. What did I do to deserve this?

Should I try to get medical leave?

[Guest guest]

Oh, hang in there, I would highly recommend you use FMLA at some point, I

finally lost my job after an emergency appendectomy they approved my FMLA and

fired me when I came back to work, long and short of it is that I got an atty

and we are settling a few months later, FMLA provides you a lot of protections.

In FL we are a right to work state so they can fire you for anything, no reason

necc so being on FMLA was my only saving grace.

I know how you feel, it is HARD to function on empty. I am so sorry they are

putting you through the extra testing. I had the opposite more faulty surgeries

than testing until I found my way to johns hopkins. So maybe it is a good thing

in the long run.

Try to keep your chin up, if I can do anything let me know! I feel for you!!!!

Sent via BlackBerry from T-Mobile

What do I do?

It seems like I am having the worst week of my life. Last Monday I

was

told I was having surgery tomorrow, Friday they told me it was

canceled, Yesterday they told me it was on, Today they said it was

canceled. My doctors want me to go to U of M and repeat all of my test

again with out anestetic. I don't know how much longer I can take this.

I am well aware that they want to be sure 100% that the surgery will be

the right thing for me but what I am I supposed to do when I can't eat?

I am weak and hungery. My work is very supportive but at the same time

I just can't do my job. I am a retail manager at a very aggresive

store. If I don't make my numbers then it sticks with me until the end

of the season. How can I do my job if I can't stop thinking of my

personal life. I can't stop crying. What did I do to deserve this?

Should I try to get medical leave?

[Guest guest]

Hi-Sorry things have not been good well.

I would take a FML.Thats a family medical leave.You are entitled up to 12

weeks for medical issues if needed.You Dr will need to do some paper work

for your job to get it approved.You will need to be out a few days for

testing,few days in hospital if done lapro and then about a few weeks to

recover so you will have to be out a bit.Did you not know this?

I hope you can soon get your surgery and get on the road to recovery.

Where are you located at?

Tonia

>

> It seems like I am having the worst week of my life. Last Monday I

> was

> told I was having surgery tomorrow, Friday they told me it was

> canceled, Yesterday they told me it was on, Today they said it was

> canceled. My doctors want me to go to U of M and repeat all of my test

> again with out anestetic. I don't know how much longer I can take this.

> I am well aware that they want to be sure 100% that the surgery will be

> the right thing for me but what I am I supposed to do when I can't eat?

> I am weak and hungery. My work is very supportive but at the same time

> I just can't do my job. I am a retail manager at a very aggresive

> store. If I don't make my numbers then it sticks with me until the end

> of the season. How can I do my job if I can't stop thinking of my

> personal life. I can't stop crying. What did I do to deserve this?

> Should I try to get medical leave?

>

[Guest guest]

Hi , The very very very first thing you have to realise, is that you have done NOTHING to deserve to go through this. The ones in hospital who let you go through all this uncertainty really deserve to go through such a phase themselves!!! I know it's hard and I understand your doubts how much longer you can take this. But I'm sure you'll hang in there and you'll make it, difficult as it might seem. It will certainly turn out for the best for you. Nevertheless, anyone in your position would be hopeless I guess, I know for sure I would be as well. But as already said, things will work out OK for you too!!! Please please please explain to those in hospital of which you think they can help you, how desperate you are and how much you need help. It's often a matter of knowing which door to knock on (or kick against). I can only hope

and pray for you, that you will be helped quickly. I am keeping my fingers soooo crossed for you and I'll be thinking of you. DON"T LOOSE HOPE!!! Love, Isabella cthymunroe <cthymunroe@...> wrote: It seems like I am having the worst week of my life. Last Monday I was told I was having surgery tomorrow, Friday they told me it was canceled, Yesterday they told me it was on, Today they said it was canceled. My doctors want me to go to U of M and repeat

all of my test again with out anestetic. I don't know how much longer I can take this. I am well aware that they want to be sure 100% that the surgery will be the right thing for me but what I am I supposed to do when I can't eat? I am weak and hungery. My work is very supportive but at the same time I just can't do my job. I am a retail manager at a very aggresive store. If I don't make my numbers then it sticks with me until the end of the season. How can I do my job if I can't stop thinking of my personal life. I can't stop crying. What did I do to deserve this? Should I try to get medical leave?

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

cthymunroe wrote:

> It seems like I am having the worst week of my life.

I am sorry you have to go through that. I remember when I was going to

have the surgery. Before I decided to go with it I had numbed my mind to

the way I was living and did not consider it a big deal. After setting a

date for the surgery I began to relax my feelings and became very

hopeful. So when it came up that the surgery would possibly not happen

the diminishing of hope was emotionally sickening. Things did get better

though, so hang in there.

I can't know what you should do about work. Here is something that may

help, if not there is no shame, this is not your fault. One thing I have

tried to do, and to teach to younger workers, is don't deal with

personal problems at work. That means don't even give place to thinking

about them. Don't think about the pain, the hunger, and how tired you

are until you are done, not before. Don't worry about, doctors,

surgeries, or money while working. Just put your mind on the job. There

will be enough worrying later. Make your personal decisions at home.

Don't think of this as a law but let it be a guide when helpful.

My experience with chronic problems is that it is rare among people,

even loved ones, friends and associates, to find one gladly willing to

bear a cross for you. Some are like wolves, friendly when things are

good but ready to eat the weak to strengthen their position. One day

they will show you to the door and and tell you it isn't about you as a

person or about friendship, it is just business.

Consider that even when people understand our condition they may still

resent it and therefore us. Some even react as if we are this way just

to annoy them, or that if we just put our minds to it we could find a

way to swallow without it being a problem. There may be laws that

protect you, but they can only help so long and so much, and they can't

stop what others will think and feel.

Again, if you are beyond this being of any help there is no shame.

notan

Not feeling so lovely. What did I do with that note from Ann? Oh yeah,

apples of gold.

[Guest guest]

Hi there, I tend to agree with everyone else. If you are going to have surgery at some point, you want to be in a good state of mind and not worrying about work or anything else. You are the most important thing right now. I can relate. I was sick, lost my job because I was sick, and now find out it was my achalasia acting up and need surgery. I'm in Canada so the system is different I'm sure. But I learned from the past. You take care of yourself and then things will fall into place. You aren't any good to work, yourself or anyone else if you don't have peace of mind. I speak from a place of experience as in the past I hit bottom and it's not a place to go. If you have to ask the question, do I need to take medical leave? then you probably do. I am currently waiting for surgery, trying to look for work and fighting with our unemployment system here. Once I have surgery I can

go on sick leave but not until then. So take care of yourself first, and everything will fall into place. My thoughts are with you and feel free to email me at anytime. Your friend in achalasia from Canadacthymunroe <cthymunroe@...> wrote: It seems like I am having the worst week of my life. Last Monday I was told I was having surgery tomorrow, Friday they told me it was

canceled, Yesterday they told me it was on, Today they said it was canceled. My doctors want me to go to U of M and repeat all of my test again with out anestetic. I don't know how much longer I can take this. I am well aware that they want to be sure 100% that the surgery will be the right thing for me but what I am I supposed to do when I can't eat? I am weak and hungery. My work is very supportive but at the same time I just can't do my job. I am a retail manager at a very aggresive store. If I don't make my numbers then it sticks with me until the end of the season. How can I do my job if I can't stop thinking of my personal life. I can't stop crying. What did I do to deserve this? Should I try to get medical leave?

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

This is unbelieveably bad treatment! You need help. You need time off from work or, at least, some scheme or plan for a much-needed, important leave in place so that when your surgery is "ON", everything else will fall into place. I suspect others on this site have ideas of how to go about this. I am self-employed and I would NOT treat myself like this, let alone your hospital and doctors and etc. Good Luck, Hang in There, All Shall be Right, Deborah

[Guest guest]

--

I'm so sorry you're having to go through this. The only thing I can suggest is three little words:Go To Cleveland.

That pretty much sums it up. Debbi in SW Michigan

[Guest guest]

,

I have to agree with Debbi on this one. You're young and have a

long life ahead of you. With the best doctors on your side,

hopefully, that time will be mostly free of symptoms. From everything

I've read and seen at Cleveland Clinic, I think they'll give you the

best chance at that.

I'm also glad to hear that you will be taking some time off work

and that you're feeling a little better about things. Hang in there

for the tests! By the way, my husband had a much less difficult time

with the manometry at Cleveland. Their nurses did a much better job

than the U of M one did. Either way, I hope you get through the tests

without too much discomfort! Take care and keep us posted!

in SCS, Michigan

>

> --

>

> I'm so sorry you're having to go through this. The only thing I can

suggest

> is three little words:

>

> Go To Cleveland.

>

> That pretty much sums it up.

>

> Debbi in SW Michigan

>

[Guest guest]

OK this is an AF issue and I do not want to offend any AF volunteers, staff or

friends. I have a question. For many years now , 10 to be exact, I have put many

hours, ideas and heart into events, programs,?advocating and?working with

families. I volunteer my time, I do not earn a penny just the satisfaction of

doing what I do?because I enjoy it and love it.

This weekend I worked at our Arthritis EXPO. This was our 2nd one. Like the

first this was a great event, great turnout and I enjoyed working at the

advocacy booth. I love being an Arthrits Ambassador and making my voice heard

(imagine that..lol). When I emailed about volunteering I said I wanted to work

either the JAA booth or the advocacy booth. Much to my surprise there was NO JAA

booth nor was there any (NONE) info available about JA at the entire event! No

signs, nothing. The chapter manager said she simply forget the materials. Only

my shirt that said " Kids Get Arthritis Too " was present. I love my local branch

employes and our Chapter folks but I do not understand......

Also we had our first JA Funday in August. It was a huge success. We were at

maximum capacity and everything about it was good. We were looking forward to

planning our second for 2009 but I was told Saturday it will not happen. It has

been axed. Its an issue of funding so we are returning to having an arthritis

walk. Thats fine, I love the walks and never understood why they cancelled our

2009 walk. I am hoping to somehow incorporate our JA funday into the walk but

obviously it will be a social event and not an educational one. What a shame,

huh?

I just dont know what to do? I feel the kiddos and their parents still are not a

prioroity and believe they should be!

Am I wrong to be saddened over this and what can I do?

Does anyone know of any USA based non for profit agencies for kids with

arthritis?

I love the AF, volunteering with them and love my advocacy work I just dont

understand why kids get cut when ever a problem arises. Louisville is a very

charitable city and when it comes to kids, even more so......

Just not getting it....

any insight?

Donna

[Guest guest]

Please let me know if I can post anything on my website

www.kidswitharthritis.com that will help you. My site is here to do whatever it

takes to help kids with arthritis. Would love to have a booth set up when ever

needed. Please let me know

Re: what do I do?

Hi Donna,

I walk a fine line here in our state. My group falls under the

Arthritis Foundation, but I march to my own drummer. Am I cynical

about the Foundation? Yes. That being said, our Foundation is run

by a very compassionate person, who has RA herself. But most of the

time, her hands are tied. Another woman and myself are starting our

fifth year of running a JA group for the state of Oregon and SW

Washington. I work very hard to make all of the parents welcome and

answer all of their questions. In many ways, our group has become

like a large family. We have over 100 families in our group now. We

have quarterly meetings. The entire family is invited, and we always

keep the meetings free. We have educational speakers for the parents

and fun activities for the children. How do we do it? The speakers

are always free. I provide all of the chaperones by tapping friends,

etc. I keep the venues very simple. I try to keep everything simple

and let the parents network and get the support which they need. We

have a huge picnic in the summer. Now you are going to ask how we

get all of this funded. We publicize everything via email and the

local ped rheumy hands out our flyers. He hands out my home number

and has new patients call me.

I have seen how we help people.. I take the calls of the parents

calling me in anguish over the diagnosis of JRA. It helps me to cope

to help them. I pay for 90% of our meetings. We are a middle class

family, but for whatever reason I am driven to do this. Maybe, it is

because when n was diagnosed with systemic JRA, I had no one to

talk to for the first 5 years.

We will be having our first JRA camp in Oregon this summer. The

fraternal group, the Eagles, has provided funding for it. I am

adamant that it has to remain free for the parents. I know how

expensive this disease is for a family. I will beg, borrow, or steal

to keep the camp free for the families. (n, 19, systemic)

On Oct 14, 2008, at 7:17 AM, ajaoky@... wrote:

> OK this is an AF issue and I do not want to offend any AF

> volunteers, staff or friends. I have a question. For many years

> now , 10 to be exact, I have put many hours, ideas and heart into

> events, programs,?advocatin g and?working with families. I volunteer

> my time, I do not earn a penny just the satisfaction of doing what

> I do?because I enjoy it and love it.

> This weekend I worked at our Arthritis EXPO. This was our 2nd one.

> Like the first this was a great event, great turnout and I enjoyed

> working at the advocacy booth. I love being an Arthrits Ambassador

> and making my voice heard (imagine that..lol). When I emailed about

> volunteering I said I wanted to work either the JAA booth or the

> advocacy booth. Much to my surprise there was NO JAA booth nor was

> there any (NONE) info available about JA at the entire event! No

> signs, nothing. The chapter manager said she simply forget the

> materials. Only my shirt that said " Kids Get Arthritis Too " was

> present. I love my local branch employes and our Chapter folks but

> I do not understand.. ....

> Also we had our first JA Funday in August. It was a huge success.

> We were at maximum capacity and everything about it was good. We

> were looking forward to planning our second for 2009 but I was told

> Saturday it will not happen. It has been axed. Its an issue of

> funding so we are returning to having an arthritis walk. Thats

> fine, I love the walks and never understood why they cancelled our

> 2009 walk. I am hoping to somehow incorporate our JA funday into

> the walk but obviously it will be a social event and not an

> educational one. What a shame, huh?

> I just dont know what to do? I feel the kiddos and their parents

> still are not a prioroity and believe they should be!

> Am I wrong to be saddened over this and what can I do?

> Does anyone know of any USA based non for profit agencies for kids

> with arthritis?

> I love the AF, volunteering with them and love my advocacy work I

> just dont understand why kids get cut when ever a problem arises.

> Louisville is a very charitable city and when it comes to kids,

> even more so......

>

> Just not getting it....

> any insight?

> Donna

>

>

[Guest guest]

awesome website!

Issadora

On Mon, Oct 20, 2008 at 5:12 PM, Wiebort <ocshooter@...> wrote:

>

> Please let me know if I can post anything on my website

> www.kidswitharthritis.com that will help you. My site is here to do

> whatever it takes to help kids with arthritis. Would love to have a booth

> set up when ever needed. Please let me know

>

>

> Re: what do I do?

>

> Hi Donna,

>

> I walk a fine line here in our state. My group falls under the

> Arthritis Foundation, but I march to my own drummer. Am I cynical

> about the Foundation? Yes. That being said, our Foundation is run

> by a very compassionate person, who has RA herself. But most of the

> time, her hands are tied. Another woman and myself are starting our

> fifth year of running a JA group for the state of Oregon and SW

> Washington. I work very hard to make all of the parents welcome and

> answer all of their questions. In many ways, our group has become

> like a large family. We have over 100 families in our group now. We

> have quarterly meetings. The entire family is invited, and we always

> keep the meetings free. We have educational speakers for the parents

> and fun activities for the children. How do we do it? The speakers

> are always free. I provide all of the chaperones by tapping friends,

> etc. I keep the venues very simple. I try to keep everything simple

> and let the parents network and get the support which they need. We

> have a huge picnic in the summer. Now you are going to ask how we

> get all of this funded. We publicize everything via email and the

> local ped rheumy hands out our flyers. He hands out my home number

> and has new patients call me.

>

> I have seen how we help people.. I take the calls of the parents

> calling me in anguish over the diagnosis of JRA. It helps me to cope

> to help them. I pay for 90% of our meetings. We are a middle class

> family, but for whatever reason I am driven to do this. Maybe, it is

> because when n was diagnosed with systemic JRA, I had no one to

> talk to for the first 5 years.

>

> We will be having our first JRA camp in Oregon this summer. The

> fraternal group, the Eagles, has provided funding for it. I am

> adamant that it has to remain free for the parents. I know how

> expensive this disease is for a family. I will beg, borrow, or steal

> to keep the camp free for the families. (n, 19, systemic)

>

>

> On Oct 14, 2008, at 7:17 AM, ajaoky@... <ajaoky%40aol.com> wrote:

>

> > OK this is an AF issue and I do not want to offend any AF

> > volunteers, staff or friends. I have a question. For many years

> > now , 10 to be exact, I have put many hours, ideas and heart into

> > events, programs,?advocatin g and?working with families. I volunteer

> > my time, I do not earn a penny just the satisfaction of doing what

> > I do?because I enjoy it and love it.

> > This weekend I worked at our Arthritis EXPO. This was our 2nd one.

> > Like the first this was a great event, great turnout and I enjoyed

> > working at the advocacy booth. I love being an Arthrits Ambassador

> > and making my voice heard (imagine that..lol). When I emailed about

> > volunteering I said I wanted to work either the JAA booth or the

> > advocacy booth. Much to my surprise there was NO JAA booth nor was

> > there any (NONE) info available about JA at the entire event! No

> > signs, nothing. The chapter manager said she simply forget the

> > materials. Only my shirt that said " Kids Get Arthritis Too " was

> > present. I love my local branch employes and our Chapter folks but

> > I do not understand.. ....

> > Also we had our first JA Funday in August. It was a huge success.

> > We were at maximum capacity and everything about it was good. We

> > were looking forward to planning our second for 2009 but I was told

> > Saturday it will not happen. It has been axed. Its an issue of

> > funding so we are returning to having an arthritis walk. Thats

> > fine, I love the walks and never understood why they cancelled our

> > 2009 walk. I am hoping to somehow incorporate our JA funday into

> > the walk but obviously it will be a social event and not an

> > educational one. What a shame, huh?

> > I just dont know what to do? I feel the kiddos and their parents

> > still are not a prioroity and believe they should be!

> > Am I wrong to be saddened over this and what can I do?

> > Does anyone know of any USA based non for profit agencies for kids

> > with arthritis?

> > I love the AF, volunteering with them and love my advocacy work I

> > just dont understand why kids get cut when ever a problem arises.

> > Louisville is a very charitable city and when it comes to kids,

> > even more so......

> >

> > Just not getting it....

> > any insight?

> > Donna

> >

> >

[Guest guest]

It's hard, I know. I used to vaccinate myself for everything there was. And I

felt horrible after MMR at age 24. I still suffer the adverse reactions!

Don't beat yourself up about it, what counts, is what you know now. You always

make the best choices based on your current knowledge, and unfortunately,

doctors tell you a lot of bad stuff, and most people don't even think of

questioning what doctors say! I have been there! While I never gave any shots to

my DS (19 months), as I said before, I got myself pretty messed up! But it's

never too late " to see the light " .

You can always claim a religious exemption for your kiddos. For all we know, you

had a vision last night, kwim?

Hold on tight... I took abx during my pregnancy and am worried sick what it

might have done to DS!