Re: all done

[Guest guest]

I had a procedure called a Tympanomastiodictomy (spell?). They also

cut behind my ear. I didn't get a chance to talk with Dr. before I

left they gave me morphine (yuck) I didn't even remember coming

home. I know they will operate again in a few months to restore my

hearing. Not sure what all this means until I see him next week.

Sue M

> > Well so far not as bad as I feared! It went well the Dr. said he

> was

> > glad to remove when he did. The c-toma was attached to my facial

> > nerve and he had to scrape it off but no damage was done. Yes

> there

> > is pain but not to bad for now. The worst so far is this cup

thing

> I

> > have to wear until Monday (alot of blood)hard to sleep with. I

go

> > back in 4 months so the Doc can restore my hearing I will have

> none

> > in that ear till then. All in all went great. The dizzy part is

> not

> > fun either how long does that last?

> >

> > Sue M.

[Guest guest]

Beth,

Just know that prayers are coming your way is large numbers. I am at a loss

for anything else to say other then I am so so very sorry.

Veri

**************************************

Check out AOL's list of 2007's

hottest products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Oh Beth, I wish I could just reach through the computer and give you a big hug.?

Obviously the appt didn't go well, and I know you must be so very frustrated

with the responses you keep getting.? Some how, some way - you will find the

help that Hannah needs - because you are an awesome advocate for your girl.? You

know that we are here for you (of course you belong!) - take time to yourself

-?you deserve it.? Hang in there - rant all you want?- here or there, vent as

you need to and give that wonderful daughter lots of hugs from us.

Val

Rob's Mom (10,systemic)?

All Done

All done with doctors who make up their minds about Hannah without ever touching

her. All done with doctors who tell us to see someone else. All done with

doctors who don't think she needs labs. All done with doctors who tell her

" you'll be ok " despite the fact that she suffers from chronic pain. All done

with doctors who aren't willing to treat her and aren't able to realize she is

not textbook, not one of her chronic illnesses fall in the textbook case

category! All done taking Hannah to specialists that tell her they realize she's

in pain; yes she's hypermobile, but sprains happen when your hypermoble; and

then tell her " there's nothing bad wrong with you " . She's in pain isn't that bad

enough!!!! I just can't stand to see her cry because she's so frustrated.

Ok, I'm all done ranting too! Thanks for listening, but I don't know what do

next. I just can't give up on her. I don't even know if we belong on this list

anymore. I'm so upset right now I'm taking some time away from the computer.

Love you guys.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Oh Beth...

I do hope you will get this...- are you telling me this dr did not even do a

physical exam on Hannah?!?!!!! Did he even let you speak or ask questions? I

am baffled how they can opt not to run labs. Within our jra network here, there

must be some doctor we can come up with that has the compassion and bedside

manner to take the time and consideration of Hannah's case to really look at the

whole picture before dismissing her pain. It would be worth a trip, a drive, a

flight even, I think. Perhaps communicating enough before bringing Hannah

physically into the picture to be sure they will stick it out with you to figure

out her case.

I know, dear Beth, you must be beside yourself with frustration and not knowing

what to do next for Hannah - take some time...enjoy Christmas - then get back at

it with a renewed vengeance to find someone to help Hannah. How far would it be

for you to go see Dr. Passo at Cincinnatti that mentioned? (the neuro

saw today just recommended a headache institute in Michigan for her!)

I understand if you need to take some time, but you absolutely belong on this

site Beth - no doubt about it.

My thoughts and prayers remain with you and Hannah.

Sending bushels of hugs to you,

Beth Yohnk <yohnkmom@...> wrote: All

done with doctors who make up their minds about Hannah without ever touching

her. All done with doctors who tell us to see someone else. All done with

doctors who don't think she needs labs. All done with doctors who tell her

" you'll be ok " despite the fact that she suffers from chronic pain. All done

with doctors who aren't willing to treat her and aren't able to realize she is

not textbook, not one of her chronic illnesses fall in the textbook case

category! All done taking Hannah to specialists that tell her they realize

she's in pain; yes she's hypermobile, but sprains happen when your hypermoble;

and then tell her " there's nothing bad wrong with you " . She's in pain isn't

that bad enough!!!! I just can't stand to see her cry because she's so

frustrated.

Ok, I'm all done ranting too! Thanks for listening, but I don't know what do

next. I just can't give up on her. I don't even know if we belong on this list

anymore. I'm so upset right now I'm taking some time away from the computer.

Love you guys.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Thank you Val! I'm so glad she has 4 shows this weekend to focus on. It will

be good for both of us, I can't wait to see her on stage!

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

All Done

All done with doctors who make up their minds about Hannah without ever touching

her. All done with doctors who tell us to see someone else. All done with

doctors who don't think she needs labs. All done with doctors who tell her

" you'll be ok " despite the fact that she suffers from chronic pain. All done

with doctors who aren't willing to treat her and aren't able to realize she is

not textbook, not one of her chronic illnesses fall in the textbook case

category! All done taking Hannah to specialists that tell her they realize she's

in pain; yes she's hypermobile, but sprains happen when your hypermoble; and

then tell her " there's nothing bad wrong with you " . She's in pain isn't that bad

enough!!!! I just can't stand to see her cry because she's so frustrated.

Ok, I'm all done ranting too! Thanks for listening, but I don't know what do

next. I just can't give up on her. I don't even know if we belong on this list

anymore. I'm so upset right now I'm taking some time away from the computer.

Love you guys.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Oh my gosh, you are making me cry. I cannot believe that yet another doctor is

unable to see that for Hannah's sake, they must take THE TIME necessary to

research and do what they were trained in medical school to do ----- FIND a

DIAGNOSIS!!! I am dumbfounded as I am sure you are, that this doctor didn't

think of something, ANYTHING, to test her for.

You are a great mother, and one of these days you will find answers for Hannah

and find a way to adequate medical treatment for what ever condition she is

found to have.

Keep praying (as we all will) and try as much as you can to get back up, pick

yourself up again to continue on the path.....

-Hadley (Isabelle, 3 yrs. JIA)

Beth Yohnk <yohnkmom@...> wrote:

All done with doctors who make up their minds about Hannah without

ever touching her. All done with doctors who tell us to see someone else. All

done with doctors who don't think she needs labs. All done with doctors who tell

her " you'll be ok " despite the fact that she suffers from chronic pain. All done

with doctors who aren't willing to treat her and aren't able to realize she is

not textbook, not one of her chronic illnesses fall in the textbook case

category! All done taking Hannah to specialists that tell her they realize she's

in pain; yes she's hypermobile, but sprains happen when your hypermoble; and

then tell her " there's nothing bad wrong with you " . She's in pain isn't that bad

enough!!!! I just can't stand to see her cry because she's so frustrated.

Ok, I'm all done ranting too! Thanks for listening, but I don't know what do

next. I just can't give up on her. I don't even know if we belong on this list

anymore. I'm so upset right now I'm taking some time away from the computer.

Love you guys.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

I am so sorry the appointment did not go at all well. I just do not

understand these drs who think a kid in pain is either A. faking it, or

B. the pain will just have to be lived with! UGH!! I always think back

to the first appt had with his first rheumy. She said that day

that the first goal is to make the child pain free. These drs should be

working on that. I will keep your family in my prayers and I hope the

shows are a huge success! Please let us know how they go,

Michele ( 20, spondy)

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Wednesday, December 05, 2007 2:35 PM

Subject: All Done

All done with doctors who make up their minds about Hannah without ever

touching her. All done with doctors who tell us to see someone else. All

done with doctors who don't think she needs labs. All done with doctors

who tell her " you'll be ok " despite the fact that she suffers from

chronic pain. All done with doctors who aren't willing to treat her and

aren't able to realize she is not textbook, not one of her chronic

illnesses fall in the textbook case category! All done taking Hannah to

specialists that tell her they realize she's in pain; yes she's

hypermobile, but sprains happen when your hypermoble; and then tell her

" there's nothing bad wrong with you " . She's in pain isn't that bad

enough!!!! I just can't stand to see her cry because she's so

frustrated.

Ok, I'm all done ranting too! Thanks for listening, but I don't know

what do next. I just can't give up on her. I don't even know if we

belong on this list anymore. I'm so upset right now I'm taking some time

away from the computer. Love you guys.

Sending prayers & happy thoughts,

Beth :-)

[Guest guest]

Stuart,

I'm so sorry you ahd to go through all this.  what kind of complications were

you having and were yous till in the hospital?  this is dreadful.  the

dizziness will go away in time.

Have a great day!

Debbie Cole

From: Stuart <pompeyster@...>

Subject: all done

Date: Friday, March 19, 2010, 9:44 AM

 

Had Cochlear Implant last Friday came out Tuesday night, Op took 6 hours

as There was minor complications. All said and done Ive no headache no pain, but

cant stand up at all toooo dizzy after a week a expected a little improvement on

dizzy front...patience I guess..

[Guest guest]

Good job le!  It's a long 48 weeks ain't it?  Slowly, your body will return to normal...  key word here is " slowly " .  Just take it easy and let your body heal.  You'll be back to normal before you know it!

Hugs,TeriOn Tue, Mar 1, 2011 at 7:20 AM, danielle <kostasmom907@...> wrote:

 

Thursday the 17th was my last day of the 48 weeks! Im so glad it is over and wanted to thank everyone for their support. Hope to be feeling back to " normal " soon. Its been a long year my worst problem right now is anxity and dizzyness, but everything seems to be easing up.

--  

Teri Gottlieb

MOVE ON.  It's just a chapter in the past, but don't close the book.  Just turn the page.

[Guest guest]

I hope so. I am eady to live again. I have really bad social anxity, im fine

around my kids and husband, but anything outside of the house i have a difacult

time. I have had an ear ach for months that i hope goes away soon, but it has

become one of my everyday things, I seem to be dizzy everyday, I have had an mri

and cat scan all normal and my wbc is already up to 3. Can I take a regular vit

with iron or not? I think i might be low on iron maybe thats y im dizzy? also i

get more dizzy the more tierd i am. I am here to help now for the next person!

And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

[Guest guest]

Great job, le!! Absolutely great! Please let us know the minute that you know, if you are RHA-negative. That's to do with the viral load.Gloria

Thursday the 17th was my last day of the 48 weeks! Im so glad it is over and wanted to thank everyone for their support. Hope to be feeling back to " normal" soon. Its been a long year my worst problem right now is anxity and dizzyness, but everything seems to be easing up.

[Guest guest]

You might want to have a dr look to see if the ear prob is a yeast infection. I know that sounds strange but yeast infec in rather odd places is common with HCV. As your resistance lowered it could linger. That also would acct for dizziness and high white cells. Just a thought, might help. Good luck" A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Mar 1, 2011, at 8:33 PM, "danielle" <kostasmom907@...> wrote:

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

[Guest guest]

le, the dragon slayer, WWWWhhhhoooo. So glad you are done with tx as you are I am sure. Just drink your water to continue to flush the meds you will be feeling much better soon.

You finished the race my friend and that is an accomplishment in its self.

From: Gloria <gadamscan@...>Subject: Re: [ ] all done Date: Tuesday, March 1, 2011, 9:44 PM

Great job, le!! Absolutely great! Please let us know the minute that you know, if you are RHA-negative. That's to do with the viral load.Gloria

Thursday the 17th was my last day of the 48 weeks! Im so glad it is over and wanted to thank everyone for their support. Hope to be feeling back to " normal" soon. Its been a long year my worst problem right now is anxity and dizzyness, but everything seems to be easing up.

[Guest guest]

le,I totally understand the social anxiety.  I was in the house for 53 weeks straight.  I was lucky to manage to get outside maybe once every two weeks for an hour or so.  When treatment was over, I found it very difficult to leave the house.  That was my safe spot.  What you are feeling is very normal.  Slowly, you will get your strength back and you will also regain your ability and desire to socialize.  When we don't have to get out of our pajama's for a year we get pretty comfortable in them.  I understand.  

Your blood count will come up to normal levels on it's own.. You can take a regular multi-vitamin.  Do NOT take ones with iron.  Let your liver heal before you knock it around with iron.  Right now, it can't take it.  The trick to getting your blood count back to normal is food.  Eat right and keep drinking lots of fluids.  Green leafy vegetables will give you the iron you need without taking a supplement.  So will red meat if you can handle it.  Some people can't after treatment.  If you can handle it once a week or so until your blood volume returns all the better.  A couple times a week, even better.  

I'd be curious to know what your Hgb and Hct are on your blood test.  That will tell us just how anemic you might be.  Dizzy and tired kinda go together..  don't wear yourself out.  Rest when you need to.  Even if that means you're on the couch every 20 minutes!  Your body will let you know what it needs, listen to it.  

When I looked in the mirror after treatment was over I realized I had aged a good 20 years.  I was 47 and I looked much older.  I started on a skin care routine.. something I had never had.  I started with a cleanser and a moisturizer and eye cream.  After a few weeks other people were telling me how great I looked!  I still felt pretty crappy but apparently my skin looked better.   People that didn't know me would estimate my age in my early 30's...  all after a few weeks of skin care.  Might want to give it a try, if you don't already have a routine.  Those meds took a lot out of your skin... I'm sure you are dealing with dry skin everywhere.. imagine what that does to your face.  

Go out and get yourself a manicure and a pedicure.  Does great things for our mind....  And before you jump full steam ahead into anything, remember the word MODERATION.  Go slowly.  You've been sick for a long time.  You now need to recover.  There is a recovery period after treatment.  Most people aren't told that.  Recovery is usually half the time that you spent on treatment.  Give yourself a break...  you're gonna need it.  

Most of all, take care of you...    You have a whole new lease on life now.  Make it worth it.Hugs,TeriOn Tue, Mar 1, 2011 at 8:33 PM, danielle <kostasmom907@...> wrote:

 

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

--  

Teri Gottlieb

MOVE ON.  It's just a chapter in the past, but don't close the book.  Just turn the page.

[Guest guest]

Very interesting question le. When I was first told about having high iron, I came home and looked it up of course. The article I read, suggested that it breaks down to two things. One is hereditary - if you have a strong family back ground from Northern Europe. Well, all of my relatives came from the British Isles. Also, my Dad has always had high iron. Of course, the second reason is Hep C.Please ask your Dr. before you go ahead and get any. Make sure that they definitely give you a test for the iron. However, I wonder about your B12?? Luv Gloria

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

[Guest guest]

Wow!!! Congrats!!!

I am both humbled and encouraged by your news. I have only just begun my journey so I am in a constant state of confusion. Stories of hope, endurance, stamina, and probably a whole lot of stubborness somehow soothe the soul. I wish you God's speed as you continue to improve and get this horrible affliction behind you.

God's Peace,

S. Colette Wise

From: theresagottlieb@...Date: Tue, 1 Mar 2011 23:35:06 -0600Subject: Re: [ ] Re: all done

le,

I totally understand the social anxiety. I was in the house for 53 weeks straight. I was lucky to manage to get outside maybe once every two weeks for an hour or so. When treatment was over, I found it very difficult to leave the house. That was my safe spot. What you are feeling is very normal. Slowly, you will get your strength back and you will also regain your ability and desire to socialize. When we don't have to get out of our pajama's for a year we get pretty comfortable in them. I understand.

Your blood count will come up to normal levels on it's own.. You can take a regular multi-vitamin. Do NOT take ones with iron. Let your liver heal before you knock it around with iron. Right now, it can't take it. The trick to getting your blood count back to normal is food. Eat right and keep drinking lots of fluids. Green leafy vegetables will give you the iron you need without taking a supplement. So will red meat if you can handle it. Some people can't after treatment. If you can handle it once a week or so until your blood volume returns all the better. A couple times a week, even better.

I'd be curious to know what your Hgb and Hct are on your blood test. That will tell us just how anemic you might be. Dizzy and tired kinda go together.. don't wear yourself out. Rest when you need to. Even if that means you're on the couch every 20 minutes! Your body will let you know what it needs, listen to it.

When I looked in the mirror after treatment was over I realized I had aged a good 20 years. I was 47 and I looked much older. I started on a skin care routine.. something I had never had. I started with a cleanser and a moisturizer and eye cream. After a few weeks other people were telling me how great I looked! I still felt pretty crappy but apparently my skin looked better. People that didn't know me would estimate my age in my early 30's... all after a few weeks of skin care. Might want to give it a try, if you don't already have a routine. Those meds took a lot out of your skin... I'm sure you are dealing with dry skin everywhere.. imagine what that does to your face.

Go out and get yourself a manicure and a pedicure. Does great things for our mind....

And before you jump full steam ahead into anything, remember the word MODERATION. Go slowly. You've been sick for a long time. You now need to recover. There is a recovery period after treatment. Most people aren't told that. Recovery is usually half the time that you spent on treatment. Give yourself a break... you're gonna need it.

Most of all, take care of you... You have a whole new lease on life now. Make it worth it.

Hugs,Teri

On Tue, Mar 1, 2011 at 8:33 PM, danielle <kostasmom907@...> wrote:

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

--

Teri GottliebMOVE ON. It's just a chapter in the past, but don't close the book. Just turn the page.

[Guest guest]

Then why am I anemic? (Still confused.)S. Colette Wise

From: gadamscan@...Date: Tue, 1 Mar 2011 21:56:15 -0800Subject: Re: [ ] Re: all done

Very interesting question le. When I was first told about having high iron, I came home and looked it up of course. The article I read, suggested that it breaks down to two things. One is hereditary - if you have a strong family back ground from Northern Europe. Well, all of my relatives came from the British Isles. Also, my Dad has always had high iron. Of course, the second reason is Hep C.Please ask your Dr. before you go ahead and get any. Make sure that they definitely give you a test for the iron. However, I wonder about your B12?? Luv Gloria

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

[Guest guest]

Cause you're female!  Most of us are anemic for that reason alone.  I was severely anemic my whole life.  I couldn't start treatment until the anemia was under control because the meds make you anemic.  My OB/Gyn did a uterine ablation on me 6 months before treatment started.  I had to have normal lab values for 6 months before my doc would go ahead with treatment.  The ablation worked for the length of the treatment and then some..  6 months after treatment ended, female problems got worse.  One hysterectomy later, never anemic again!  

Hugs,TeriOn Wed, Mar 2, 2011 at 12:06 AM, Colette Wise <scwise@...> wrote:

 

Then why am I anemic?  (Still confused.)S. Colette Wise  

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[Guest guest]

Now, that one confused me as well!! All of my adult hood until I was 40, I was very very often anaemic because I flowed so heavily. Then to learn in between treatments about now having high iron. Then being warned about anaemia because I couldn't eat so well. It's definitely confusing.Gloria

Then why am I anemic? (Still confused.)S. Colette Wise

Very interesting question le. When I was first told about having high iron, I came home and looked it up of course. The article I read, suggested that it breaks down to two things. One is hereditary - if you have a strong family back ground from Northern Europe. Well, all of my relatives came from the British Isles. Also, my Dad has always had high iron. Of course, the second reason is Hep C.Please ask your Dr. before you go ahead and get any. Make sure that they definitely give you a test for the iron. However, I wonder about your B12?? Luv Gloria

I hope so. I am eady to live again. I have really bad social anxity, im fine around my kids and husband, but anything outside of the house i have a difacult time. I have had an ear ach for months that i hope goes away soon, but it has become one of my everyday things, I seem to be dizzy everyday, I have had an mri and cat scan all normal and my wbc is already up to 3. Can I take a regular vit with iron or not? I think i might be low on iron maybe thats y im dizzy? also i get more dizzy the more tierd i am. I am here to help now for the next person! And Don thank you for your kind words you too are a hero!!! Loveyou guys! D

[Guest guest]

Yup, I'm sure glad that I had the hysterectomy long before I even knew anything about Hep C. Except for the warning from one of the local Hep C nurses, I sure never heard about anymore and they must have had a whole lot of my blood to test.Gloria

Cause you're female! Most of us are anemic for that reason alone. I was severely anemic my whole life. I couldn't start treatment until the anemia was under control because the meds make you anemic. My OB/Gyn did a uterine ablation on me 6 months before treatment started. I had to have normal lab values for 6 months before my doc would go ahead with treatment. The ablation worked for the length of the treatment and then some.. 6 months after treatment ended, female problems got worse. One hysterectomy later, never anemic again!

Hugs,TeriOn Wed, Mar 2, 2011 at 12:06 AM, Colette Wise <scwise@...> wrote:

Then why am I anemic? (Still confused.)S. Colette Wise

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[Guest guest]

le, CONGRATS, you earned it!! Never forget where you have been and help others. God Bless, Betty

From: Beth Frey <bethfrey42301@...> Sent: Tue, March 1, 2011 10:38:28 PMSubject: Re: [ ] all done

le, the dragon slayer, WWWWhhhhoooo. So glad you are done with tx as you are I am sure. Just drink your water to continue to flush the meds you will be feeling much better soon.

You finished the race my friend and that is an accomplishment in its self.

From: Gloria <gadamscan@...>Subject: Re: [ ] all done Date: Tuesday, March 1, 2011, 9:44 PM

Great job, le!! Absolutely great! Please let us know the minute that you know, if you are RHA-negative. That's to do with the viral load.Gloria

Thursday the 17th was my last day of the 48 weeks! Im so glad it is over and wanted to thank everyone for their support. Hope to be feeling back to " normal" soon. Its been a long year my worst problem right now is anxity and dizzyness, but everything seems to be easing up.