haven't been in for long time

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Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 1/3/2008 7:08 AM (GMT -6)   
I have long time havn't come in here.  I am in hospital for more than 2 months now.  I got TB and don't know the reason.  Anyway, the cellcept caused the TB get into my spinal cord, so now I can only walk with a frame or sit on a wheel chair.  It will take 1-2 years to recover.  This tragedy was a shock to me.  Glad that the UK medical is free for me and I have no finanal worry due to this.  It's hard for me, but my goal is to learn to walk without anytihing.  Keep the fiingers cross.  I can use the internet in the weekday for some hours.  The Rhum here stopped my cellcept now.  I am on high dosage of steriod so that the inflmation of my spine will get better.  I eat like a pig, but I need energy.  I know it's from the steriod.  I am in Rehab centre and doing therapy everyday except holiday.  The fevers caused my doc to admit me.  I think I had said that I had fever for 4 days and thought it's lupus and got an urgent appt.  Here then, in hospital till now and continue to be for 4 more weeks.  Will keep you posted.
DX SLE 1988; Pred 10mg, Cellcept 2500 mg, Verapmil 120 mg (for migraine headaches), Famotidine 20 mg BD, Volteran 150 mg (temporary), Calcium + Vitamin D 1200mg

Forum Moderator

Date Joined Jun 2006
Total Posts : 1533
   Posted 1/3/2008 8:53 AM (GMT -6)   
(((Omega))) Wow, you're sure having a rough time.  I'm sorry that you're so sick.  I used to be a microbiologist, so I know how resistant TB can be.  Keep fighting girl!!  You can beat this bug!!  PLEASE keep us updated when you can.  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/3/2008 9:20 AM (GMT -6)   
OH NO! (((((((((Omega))))))))) *tears* Oh no dear sister! I'm so sorry. What a journey for you . . . many bridges in this chapter!!

Do make sure they have you on a heavy duty calcium supplement for your bones and YES it is a blessing to not need to worry about how to pay for health care or insurance. *phewwwww*

I hope you'll post often and tell us of your progress/struggles. Omega . . . sharing your story helps us each appreciate some of the health we've taken for granted even when we are pretty bad off.

Sending you some hot tea and a big hug sis.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/3/2008 10:34 AM (GMT -6)   
Oh my gosh...I'm so sorry to hear how sick you have gotten and that you have been in the hospital for so long. This whole thing must be pretty scary for you. I'm really hoping that the docs will help you to improve and find meds that will help you. It sounds like you have a long road ahead of you. We'll be here for you through all of it. Thank you for checking in and please keep us updated when you are feeling up to it.

Take care (((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 1/3/2008 4:01 PM (GMT -6)   

I am so sorry you must deal with these serious health issues. Please know you are in my prayers.
Audrey Ann
Lupus and RA and LOTS of Medications!


Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 1/3/2008 6:32 PM (GMT -6)   
You are in my prayers. God strengthen and help you! Hang in there! Judy

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/3/2008 8:31 PM (GMT -6)   

Wow, what a burden to carry. I hope they get you back to full potential. I'll be saying a prayer for you. You keep fighting, know we're here for you.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 1/4/2008 12:10 AM (GMT -6)   

You have had quite a struggle to just get to the point of rehab. I'm so glad you were able to let us know what has been going on with you. Now we can send you lots of strength and determination as long as you need it. Please take good care!

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditiis Raynauds, Sjogrens, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia fibromyalgia[

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/4/2008 12:28 AM (GMT -6)   
Omega, (((((hugs)))), you have been through so much.  I'm praying for you too sis.  Hold on to those who are supporting you.  I'm glad you have good health care.  It's a blessing.
Please update us when you can.  We know it's hard and you're busy with your rehab.  We just want to know how you're doing.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 1/4/2008 9:22 AM (GMT -6)   
Thanks for all your prayers!  I need that.  I am now using a walking frame and can use it to walk further distance.  Today I learned to walk with one hand holding onto the parallel bar, and it is difficult.  However, I enjoyed doing this because this is a first step to use the crutches.  I tried to use the walking frame as much as I can, but I won't dare to use it to go downstair to physiotherapy yet.  I don't want to fall. 
Yes.  I learn to appreciate what I had before.  Changing clothes, showering, tolieting seem easy, but it drains my energy.  I will hang in there and continue to practice.  Hope one day I will able to walk as a normal person.  I believe I will.  I will continue to keep you all posted as possible as I can.
DX SLE 1988; Pred 10mg, Cellcept 2500 mg, Verapmil 120 mg (for migraine headaches), Famotidine 20 mg BD, Volteran 150 mg (temporary), Calcium + Vitamin D 1200mg

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