Author Topic: Just an update  (Read 8215 times)

harrigan

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Re: Just an update
« Reply #30 on: June 24, 2009, 12:25:01 PM »
Thinking of you both JJ.  You have had to be so strong.  xx Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

loulou

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Re: Just an update
« Reply #31 on: June 25, 2009, 08:34:55 AM »
THinking of you both, praying even harder.

God bless !

Loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

Chickpea

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Re: Just an update
« Reply #32 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

JJ

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Re: Just an update
« Reply #33 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...

Scottietottie

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Re: Just an update
« Reply #34 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
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ktfabian

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Re: Just an update
« Reply #35 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
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

loulou

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Re: Just an update
« Reply #36 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
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

Katybarstool

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Re: Just an update
« Reply #37 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

Chickpea

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Re: Just an update
« Reply #38 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

kimbo

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Re: Just an update
« Reply #39 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
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog