Jump to content
RemedySpot.com

Hi

Rate this topic


Guest guest

Recommended Posts

Guest guest

My son is 25 yrs old-still struggles with . He has all of the symptoms but

they've changed patterns over the years. He does have chronic tiredness and

muscle fatigue, but still has fevers, swollen glands, headaches, peeling hands,

mouth sores, etc.

Stress seems to intensify his episodes.

Kathleen

Mom of , 25 yrs old. (still has tonsils)

Link to comment
Share on other sites

Guest guest

My son is 25 yrs old-still struggles with . He has all of the symptoms but

they've changed patterns over the years. He does have chronic tiredness and

muscle fatigue, but still has fevers, swollen glands, headaches, peeling hands,

mouth sores, etc.

Stress seems to intensify his episodes.

Kathleen

Mom of , 25 yrs old. (still has tonsils)

Link to comment
Share on other sites

Guest guest

My son is 25 yrs old-still struggles with . He has all of the symptoms but

they've changed patterns over the years. He does have chronic tiredness and

muscle fatigue, but still has fevers, swollen glands, headaches, peeling hands,

mouth sores, etc.

Stress seems to intensify his episodes.

Kathleen

Mom of , 25 yrs old. (still has tonsils)

Link to comment
Share on other sites

  • 2 weeks later...
Guest guest

Honey I don't know how you are still working full time at this point. You are a very strong determined woman and always keep up that fight for you.

I also worked full time many times long hours into late stage 3. Than into borderline stage 4 agreed on tx even after being honestly fully advised I was probably in a fast progression and tx may trigger worsening of it. It did threw me into fast track cirrhosis stages and had to be medically pulled off tx very early with serious complications.

Many people in late stages and 4 also said they were doing good even some doing great than as time complications progressions stress got to a point stage it's accumulations the symptoms new ones and other complications hit them including total fatigue.

Stress will do it to us add to it and on a faster track. My plan of action was to get everything in order prioritize it try to live as stress free as possible asap. Yes I know easier said than done but very doable.

Disability benefits from an employer is much easier to get than medicare medical disability. Medicare disability has now recognized dx's of HCV stage and complications from it all much better but it is still a long hard struggle fight to get it.

My best advise and hope it helps file for whatever you are entitled to asap it takes time for documentations sending for all medical records to be accepted or denied with possibly many appeals.

Be very well prepared ahead of time your own documentations have it all written down all complications symptoms how you feel total body what you can and can not do anymore for all Dr appt's make sure your Dr's document it all in your charts medical records fully explaining it all and long short term prognoses. I would sit there and smile at them watching them write it all in my charts until they did it. Now many dictate it after you leave your appt's. Your disability claims can always be updated added to as time goes by.

Keep us updated about you and you can also reach us in private emails to discuss things.

Hang In There !!!!!!!!!!!

All The Best.

Deb

Re: Hi

Thank you for your support and encouraging words. I'm doing goodunder the curcumstances - I still work full time. I do feel howeverthat recently my health is taking a negative turn and I am not surehow much longer I will be able to work. I am just so very tired andhave a lot of joint pain. I also seem to be having more problemswith my memory and depression. I am working towards going ondisability - I just think that if I could rest more and not be in thestressful atmosphere of work that I will do better. My liver has tolast me four more years - I have to be five years cancer free to beon a list. I have this bone marrow test today - I pray that it willbe ok. I think it will - I'm sure my bad blood test are a result ofmy liver - they just need to make sure. I will know in a week - ifthere is a problem there I really am in serious trouble. Even

thoughyou know it is going to be ok -still really scarry.Thanks again for your kind words

Link to comment
Share on other sites

  • 2 weeks later...
Guest guest

Hey Pat

what have you been up to i read your last pat sorry your such a hard time but we have been there are yall appling for disability and do you have a lawyer we applied for ssi after we got a lawyer he sent us over there but they turned us down we had two cars but no income neither of us was working we did apply for food stamps and got them til i went to work hope things work out for yall glad to hear from you

kat

From: patricia <pandas2@...>Subject: hiHepatitis Cfordummies Date: Monday, July 28, 2008, 8:08 PM

Anyone out there? Am I still a member? Love to all.....ww/pat

Link to comment
Share on other sites

Guest guest

Hey Pat

what have you been up to i read your last pat sorry your such a hard time but we have been there are yall appling for disability and do you have a lawyer we applied for ssi after we got a lawyer he sent us over there but they turned us down we had two cars but no income neither of us was working we did apply for food stamps and got them til i went to work hope things work out for yall glad to hear from you

kat

From: patricia <pandas2@...>Subject: hiHepatitis Cfordummies Date: Monday, July 28, 2008, 8:08 PM

Anyone out there? Am I still a member? Love to all.....ww/pat

Link to comment
Share on other sites

Guest guest

Hey Pat

what have you been up to i read your last pat sorry your such a hard time but we have been there are yall appling for disability and do you have a lawyer we applied for ssi after we got a lawyer he sent us over there but they turned us down we had two cars but no income neither of us was working we did apply for food stamps and got them til i went to work hope things work out for yall glad to hear from you

kat

From: patricia <pandas2@...>Subject: hiHepatitis Cfordummies Date: Monday, July 28, 2008, 8:08 PM

Anyone out there? Am I still a member? Love to all.....ww/pat

Link to comment
Share on other sites

Guest guest

Hi Marlee...

Where in Texas do you live? We can refer you to groups in your area for help.

This list is a great resource too. Go to the files section of the yahoo group

and there is tons of information.

KK

hi

Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with autism.

Any places I can call to get info packets for autism?

Link to comment
Share on other sites

Guest guest

What area of Texas are you in?

Nagla

>

> Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with autism.

> Any places I can call to get info packets for autism?

>

Link to comment
Share on other sites

Guest guest

What area of Texas are you in?

Nagla

>

> Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with autism.

> Any places I can call to get info packets for autism?

>

Link to comment
Share on other sites

Guest guest

i'm in batesville ,tx

 

Marlee

 

Re: hi

What area of Texas are you in?

Nagla

>

> Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with autism.

> Any places I can call to get info packets for autism?

>

Link to comment
Share on other sites

Guest guest

Marlee,

Here is a link to the Autism Society of Greater San :

http://www.autismsocietysa.org/index.html

They have a link to a Free Resource Guide on the front page of their

website. It was last updated June of 2008 so it is very current and

looks very comprehensive at 212 pages!

The TACA website has a great section for " new parents. " You navigate

the website using the left-hand margin.

Child Newly Diagnosed with Autism

http://www.talkaboutcuringautism.org/autism/autism_intro.htm

For a minimal cost, you can order the " Autism Journey Guide " from the

TACA website:

https://www.tacanow.org/store/product.php?productid=16161 & cat=255 & page=1

in case that gets jumbled:

http://tinyurl.com/6f6btn

Best Regards,

Sofia

> >

> > Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with

autism.

> > Any places I can call to get info packets for autism?

> >

>

>

>

>

Link to comment
Share on other sites

Guest guest

Marlee,

Here is a link to the Autism Society of Greater San :

http://www.autismsocietysa.org/index.html

They have a link to a Free Resource Guide on the front page of their

website. It was last updated June of 2008 so it is very current and

looks very comprehensive at 212 pages!

The TACA website has a great section for " new parents. " You navigate

the website using the left-hand margin.

Child Newly Diagnosed with Autism

http://www.talkaboutcuringautism.org/autism/autism_intro.htm

For a minimal cost, you can order the " Autism Journey Guide " from the

TACA website:

https://www.tacanow.org/store/product.php?productid=16161 & cat=255 & page=1

in case that gets jumbled:

http://tinyurl.com/6f6btn

Best Regards,

Sofia

> >

> > Hi. everybody.. Yesterday my 2 yr. old son was diagnosed with

autism.

> > Any places I can call to get info packets for autism?

> >

>

>

>

>

Link to comment
Share on other sites

  • 2 weeks later...

Dorsey ~~

I'm glad to hear that you are still plugging along. It's wonderful that they finally did a hepatimax and you are undetectable!!! That's the greatest news someone on tx can hear. You're really a trooper and I admire you for your courage and tenacity in continuing inspite of all the complications that you have had. Keep up the good work lady!

For me, I am back into the full swing of life since completing tx two months ago. There is life after tx!! It only took a short time to add back in the spiritual things in my life that I so sorely missed on tx (AA, church, bible studies). The one thing that I have not been able to do too well, however, is exercising much. I start a class at college on the 25th that will help me develop a workout routine that I can handle. I am really looking forward to this as I exercised regularly before starting tx but just couldn't during tx as it was too much for me.

Hugs and prayers,

From: DORSEY PETERSON <dgratitude@...>Subject: Re: Hi Hepatitis CSupportGroupForDummies Date: Monday, August 11, 2008, 2:44 PM

Hey -- good to hear from you.. You would think that since I see a Hepatologist from "Lifelink" where they do transplants !! They would have ordered the Heptimax from the beginning.!! I'm a little upset.. Oh well, I'm going tomorrow for a regular checkup and NP I always see said she would order it tomorrow.

Things are moving along VERY SLOWLY! hee hee... Mostly just VERY TIRED all the time and of COURSE NAUSEATED! RBC very good! WBC poo poo! Now back to taking Neupogen every week now.. I hate it! You remember just another whole in the body...

, how are you feeling these days??? Thanks for still hanging in there with us.. WE miss you..

Love, Dorsey

Link to comment
Share on other sites

  • 3 weeks later...

Hi ,

I'm new to the group as well. It sounds a lot like Still's to me. I

actually got my confirmation diagnosis when I had an abdominal CAT Scan for

abdominal pain. It showed my liver and spleen were enlarged and that is what

finally gave the doc " enough " information (rash, fevers, joint pain, IBS,

fatigue,

weakness, on and on) but he didn't want to say for sure until we saw some

additional tangible clues.... that, and my WBC were about 33,000 with no sign

of infection. So, anyway, welcome fellow newbie. I've already found so much

comfort here. I know you will too!

-Jo

In a message dated 8/28/2008 10:28:23 P.M. Eastern Daylight Time,

kjmierau@... writes:

Hello. I'm . I have been driving my doctors crazy for 18 months with

unexplained fevers, high esr's, high liver enzymes, extreme fatigue, chest

pain, joint pain and swelling, abdominal rash, etc. I went to the Mayo Clinic

in

Rochester at the beginning of this month and they think I might have Still's.

I don't check all of the boxes on the Still's list, so they're not saying

for sure yet. They didn't put me on steriods, yet. I've been " lurking " for a

couple of days, reading your posts. Its so strange to see all of " my " symptoms

being talked about. I don't feel quite so alone... Thanks.

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

Link to comment
Share on other sites

Mandy, I was so depressed when I was in the hospital and first diagnosed

that I couldn't even function. I'm glad you are feeling mentally better... I

wish something would stop the aches for you.

What is it with Social Security 'punishing' you for working? It doesn't make

sense, does it. It's the same up here in Canada with Social Assistance

(which I'm on)... it doesn't even come CLOSE to paying my bills, yet I'm

being given less because I moved in with family.

Chin up, good luck.

Link to comment
Share on other sites

Mandy, I was so depressed when I was in the hospital and first diagnosed

that I couldn't even function. I'm glad you are feeling mentally better... I

wish something would stop the aches for you.

What is it with Social Security 'punishing' you for working? It doesn't make

sense, does it. It's the same up here in Canada with Social Assistance

(which I'm on)... it doesn't even come CLOSE to paying my bills, yet I'm

being given less because I moved in with family.

Chin up, good luck.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...