Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: JJ on May 12, 2009, 05:00:33 AM

Title: Just an update
Post by: JJ on May 12, 2009, 05:00:33 AM
Hello All,

  My hopes are that everyone is doing as well as possible...as for me have been making it.

My daughter that I have written about several times, the one who had her Thyroid removed

with two masses growing in it has just now been informed she has a new mass in her throat

area where the thyroid use to be. She will be having an ultrasound done on that area and will

also talk about another surgery...they still have not decided what to do with the tumor on

her brain as of yet...please keep her in your prayers and thoughts...the Sjogrens plus all

of this has really got her weak..and since her doctor will not release her for work until

her blood work starts to look better she is worried about living now..and as you all know

oh so well stress is not good so prayers are really needed. Thank you all for your support.

JJ

Title: Re: Just an update
Post by: jonnell on May 12, 2009, 05:31:19 AM
My thoughts and prayers are with you and your daughter.   Hugs and Kissess   Jonnell and Jenna
Title: Re: Just an update
Post by: Katybarstool on May 12, 2009, 05:46:30 AM
JJ

My heart goes out to your and your daughter. I will definitely remember you both in my prayers.

KAthyx
Title: Re: Just an update
Post by: Redetha on May 12, 2009, 06:06:06 AM
  Hugs and Prayers to you and your family.  Redetha
Title: Re: Just an update
Post by: ohiolady on May 12, 2009, 07:19:22 AM
My prayers are with you and your daughter.  Sometimes life can be so difficult.  Please keep us updated on her treatment plan.

Anna
Title: Re: Just an update
Post by: ruby52 on May 12, 2009, 07:21:02 AM
So sorry to hear more bad news for your daughter.Hope things turn around soon.
                                                                Ruby
Title: Re: Just an update
Post by: lesmom on May 12, 2009, 07:39:26 AM
May the Lord lift your daughter and you and your family up at this time. He does work miracles and the power of prayer is a wonderful thing. My thoughts and prayers are with you.
Leslie
Title: Re: Just an update
Post by: Scottietottie on May 12, 2009, 09:07:06 AM
Hi JJ

I'm really sorry to hear the news about your daughter. That's a horrible position to be in - obviously for her - but equally for you. I sincerely hope that she can get some treatment soon that helps and that she regains strength.

We're a listening ear when you need to talk about it. Thoughts with you.

Take care - Scottie  :)
Title: Re: Just an update
Post by: Dolly Dimples on May 12, 2009, 10:54:25 AM
   JJ  My thoughts are with you and your precious daughter..

     I can't imagine anything worse than having to watch your poor child suffer in this way..

   May she come out of all of this soon, we will all be here for her with prayer and loving thoughts,, Dolly.
Title: Re: Just an update
Post by: Chickpea on May 12, 2009, 10:57:38 AM
Dear JJ

My heart goes out to you and your daughter.  Thank you so much for sharing your troubles with us - I hope we can be of some comfort. 

Let us know how things go and what support you need.

Thinking of you - Chickpea
Title: Re: Just an update
Post by: fluffiebunnie on May 12, 2009, 11:00:16 AM
I am so sorry you and your daughter are having to go through this. Sending all my best wishes x
Title: Re: Just an update
Post by: Patze on May 12, 2009, 05:37:45 PM
Hi JJ,

Let me also send you and your daughter my best wishes and I'll keep y'all in my thoughts and prayers.  Please keep us updated, okay?

Hang in there and take care -

Patze
Title: Re: Just an update
Post by: KYMOM on May 12, 2009, 06:59:46 PM
JJ, will keep both you and your daughter in my thoughts.  Sorry for all that she has had to endure.  Roxanne
Title: Re: Just an update
Post by: Leisa on May 12, 2009, 07:56:08 PM
I am so sorry to hear about your daughter. I will keep her in my prayers and also you.
Title: Re: Just an update
Post by: kimbo on May 12, 2009, 08:23:31 PM
J & J

So sorry for your daughter with her health issues, as a mother of daughters; I pray for your comfort and peace in your heart . Direction for health answers and Doctors who care and understand.

 Keep us posted and informed.

Feel free to come and poor out all your anxieties and frustrated feelings to your family forum and sjoggie pals here.

kimbo 
Title: Re: Just an update
Post by: JJ on May 13, 2009, 12:21:23 PM
Thanks to all and Kimbo that was very nice...still waiting....

JJ
Title: Re: Just an update
Post by: JJ on June 01, 2009, 12:15:18 PM
Okay, good news...she found a really good Nero...she is scheduled to have another MRI Tomorrow..

and was set up for apt. an hour and a half out of her first visit with him. The other Nero said it was

small and he told her it wasn't as small as they had her thinking...saw it first time looking at the MRI

CD she had to get for him. He lost his own sister to a brain tumor which seems to make him more serious

which is a shame. He also set her up an appointment with an optometrist...because of the vision problems

she has been experiencing.  He said he was very disappointed in the other doctor. He also says he does

not believe that the thyroid levels are what is causing the tumor but the other way around. She is feeling so

much better that this doctor is actually doing something...I'm glad she found him. Keep praying it works!

Thanks to all...
Title: Re: Just an update
Post by: Scottietottie on June 01, 2009, 05:42:30 PM
Hi JJ

I'm so glad you have found a good neuro now. It sounds like he's going to move quickly and actually do something. I hope that things take a turn for the better in the very near future. It must have been awful for both your daughter and yourself to have nothing being done.

Take care - Scottie  :)
Title: Re: Just an update
Post by: JJ on June 02, 2009, 05:15:17 AM
Thank you Scottie....and yes she was feeling very let down, scared, and hopeless. With me living in IL and

her in TX...it has a way of making me feel the same but i am sure no where near what she was feeling.

After he talked to her she started crying and said it was because she finally didn't feel like she was crazy

and that something was going to be done. The Rheumy is the one that actually got the first MRI so she

is in good hands with him...just it is Neurological and that isn't his area and he sent her to the Neuro that

just seemed to drag his feet...when he found this out finally he sent her to this new one what a breath of

relief. This new Neuro held her hand and talked as well as listened to her...she half expected that after

she walked out of the office it would all go back to the feet dragging but an hour and a half later his receptionist

called with these appointments. Now if she can get an Endocrine doc that is as good as the other two she'll have

it made. Thank you all so much for listening. I will be posting a question I have about something that is happening

to me recently...but i think my being worried about her may tend to aggravate my symptoms at times

getting feed back and support helps to keep my worry down. So through everyone's prayers you help not only

my daughter but me as well...thanks!

JJ

Title: Re: Just an update
Post by: Chickpea on June 02, 2009, 11:49:58 AM
Hi JJ

I had tears in my eyes reading your post.  What a wonderful neuro!  If only more doctors realised that sometimes the best medicine is to sit and listen. 

My thoughts are with you and your daughter.

Take care - Chickpea
Title: Re: Just an update
Post by: kimbo on June 03, 2009, 05:02:27 PM
OH JJ,

Such great news.

I am giving thanks for that Neuro. I am  wondering if the loss of his sister is what guided him into his field of expertise.  It certainly gave him compassion. Bless his heart.

Do, please watch your stress. I will continue to pray peace and comfort on your behalf.

Your daughter also, So happy a good Doc goes a long ways to health issues and knowing he is giving direction to a road to recovery.  :)

Ways to manage your stress levels :  

Allow yourself minimal time to focus on issues and problems, and never in the nite, bed is sacred from worries. We all know how distorted things become when we wake up in the nite.

Manage your busy ..... just say no.

Spend time with  loved ones, people that make you happy and feed your positive spirit.

Push negative thoughts out, with positive thoughts.

I am not saying, I am successful at always thinking positively   ;D   But I do believe we can train our selves with self taking.  And becoming aware when I am sinking into despair of negativity. I mentally shake myself and try to snap out of it.

I have heard of placing a rubber band on your wrist, snapping it to remind yourselves of reoccurring negative thought patterns.


I am sorry if I have over stepped ,   I hope so much that you and your daughter feel great comfort and delivery from the stress that can so agitate.

Hugs and prayers ,  kimbo


Title: Re: Just an update
Post by: JJ on June 05, 2009, 02:59:53 AM
Thanks so much Kimbo, and yes I am really trying to manage the stress.

Well just a little update, she had her eye appointment yesterday and will go back on the

11th for the second portion plus had MRI. They did find that her left eye has more pressure on it

than the right...so not sure what exactly that means...I guess they are just trying to see if

the tumor is putting pressure on it....after the 11th she will go back to Neuro  on 22nd.

He wants to get all the other tests and have time to go over it all because he wants

to talk to her in person not on the phone. This does not make for a patient Nay...she is

now worried again about feet dragging...I know that the not knowing is such a stressful thing.

I think it will all be okay, just so glad he is at least doing something...Thanks again everyone..

as soon as I know more I will post.

JJ
Title: Re: Just an update
Post by: kimbo on June 05, 2009, 06:41:23 AM
Thanks for the up date JJ.

prayers and hugs, kimbo
Title: Re: Just an update
Post by: loulou on June 05, 2009, 10:15:08 AM
hi JJ

I have been reading through your posts, and want to send my positive thoughts and prayers for your daughter and yourself. I have 4 daughters and 1 boy, i can imagine what the worry and anxiety is doing to you.

I will keep you both in my prayers and pray for some good results and news. Please try and look afteryourself, take a bit of time out if you can. I wish you all the best.

TAke care.
Loulou
Title: Re: Just an update
Post by: Katybarstool on June 05, 2009, 11:24:22 AM
JJ

My heart goes out to you and your daughter at this trying time. Sending hugs and prayers to you both.

Kathyx
Title: Re: Just an update
Post by: JJ on June 22, 2009, 09:07:36 AM
Well folks please keep the prayers coming...she was admitted in the hospital Friday night...

the pain meds were not helping her and as a matter of fact the ones they gave her in the

hospital didn't even knock her out.....5 different kinds....should hear more this evening

will keep you posted...thanks for keeping her in your thoughts and prayers.


JJ
Title: Re: Just an update
Post by: Katybarstool on June 22, 2009, 01:03:31 PM
JJ

Sending you both hugs and prayers.

Kathyx
Title: Re: Just an update
Post by: JJ on June 22, 2009, 07:07:04 PM
Seems that the tumor not only grew from four months ago to two and a half weeks

ago, but it has grown from two and a half weeks ago to today. Looks like surgery

is going to be next step....More when I know.

JJ
Title: Re: Just an update
Post by: TerriJ on June 22, 2009, 07:34:17 PM
JJ,

I am sending my prayers and good thoughts to you and your daughter.  I can't imagine how difficult this all must be. 

Terri
Title: Re: Just an update
Post by: dbab on June 24, 2009, 08:05:22 AM
I'm keeping her and you in my thoughts and prayers.
Title: Re: Just an update
Post by: harrigan on June 24, 2009, 12:25:01 PM
Thinking of you both JJ.  You have had to be so strong.  xx Ailsa
Title: Re: Just an update
Post by: loulou on June 25, 2009, 08:34:55 AM
THinking of you both, praying even harder.

God bless !

Loulou
Title: Re: Just an update
Post by: Chickpea on June 28, 2009, 12:03:23 PM
Hi JJ

Sorry I've come to this late but I've been away from my computer for a few days. 

Sending you both my love - Chickpea
Title: Re: Just an update
Post by: JJ on June 29, 2009, 05:42:18 AM
She is still in hospital....the hospital doctor miss read her MRI had us all very scared. The tumor

has not grown...but they still have her on oxygen because she keeps going down to 80 when

they take her off. They have changed her thyroid replacement med with a different one and her

lvls are looking better....so i guess her body is absorbing it....her heart rate and blood pressure has

come up....they still haven't been able to help her head pain no matter what they give her it hasn't

worked. Still unable to keep food down....they took her off the IV the first part of last week, then

went to put a central line in to do a test for hormones...her veins kept collapsing they tried twice to

get it in and it would curl up....they finally got something put into her neck....got her on IV and

got her hydrated again....still had a hard time drawing blood though. They still haven't taken a chest

ex-ray, which i think they should because of hr not able to catch her breath and the fact they have

her on oxygen. But what do I know I'm not a doctor....they still haven't got this thing figured out

and they still haven't got her pain to go away or even ease off....I'm angry and I feel helpless...not

sure what is going to happen...
Title: Re: Just an update
Post by: Scottietottie on June 29, 2009, 09:22:02 AM
Hi JJ

What you and your daughter are going through is just awful. I swear it's worse watching our kids suffer than going through stuff ourselves. It seems crazy in this day and age that they can't get pain under control. It's awful not having any answers either.

I guess it's good that the tumor hasn't grown but it was pretty bad that it was misread and that you were mislead. I just sincerely hope they get to the bottom of things, get some answers and that things improve.

Take care - Scottie
Title: Re: Just an update
Post by: ktfabian on June 29, 2009, 10:41:21 AM
Hi JJ,

I'm also coming into this late.  My prayers are with all of you. 

Like Scottie, in this day and age, I find it very hard to believe that they can't control pain.  I wonder sometimes, as a chronic pain patient, is it a case of can't or won't.

All my best to all of you and I hope this ordeal is over for you right away,
Tracy
Title: Re: Just an update
Post by: loulou on June 29, 2009, 11:30:08 AM
hi JJ

I was hoping when i see your post that something had been done to ease your daughters pain, and to get answers as to what the docs intend to do.

I hope and pray that they get proactive and treat your daughters pain as soon as possible.Please know we are all thinking and praying for you both.

Take care JJ
Loulou
Title: Re: Just an update
Post by: Katybarstool on June 29, 2009, 12:49:16 PM
Hi JJ

I really feel for ou and your daughter just now, and hope and pray that they will et the pain sorted out for her soon.

Hugs
Kathyx
Title: Re: Just an update
Post by: Chickpea on June 29, 2009, 01:22:58 PM
Hi JJ

It's good to hear that the tumour hasn't grown further.  How could they misread the MRI and frighten you so?

My heart goes out to you both.  As the others say, we'd all of us take our children's suffering on ourselves if only we could.  No wonder you feel so angry and helpless, as you say.

Thinking of you - Chickpea
Title: Re: Just an update
Post by: kimbo on July 02, 2009, 07:32:26 PM
Hey JJ

I am getting caught up on this news, as I have been gone a while on a vacation.

So sorry to here of your frustrations and your daughter still in such stress of health.

Prayers on your doctors, that they see your despair and intensify their treatment. And prayers for your daughter with healing in response to excellent treatments.

Prayers, love and hugs,  kimbo