Good News Finally

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/4/2008 4:15 PM (GMT -7)   
Hi Everyone:

I've not posted in awhile, I've been feeling much more fatigued. Yesterday, I had a really rough day. I saw 3 doctors, 1 bone density scan, 1 biopsy, and 12 vials of blood drawn. I was told I'm going to start humira on Monday, as my joints are showing deformity on MRI. I also was told that my MDS may be advancing and I'd need further tests.

If my MDS is advancing on to leukemia it's bitter sweet, it 1 means I'll get closer to my bone marrow transplant, but 2 it means I'm gonna get sicker and sicker and my time on earth may be cut a lot shorter than I anticipated. I'll have to await the results on my bone marrow biopsies before I know whether it's advanced a lot or a little.

So, I sure you're wondering where the good news is. Well, finally my attorney called me today and I've won my SSDI case. I'll be receiving 3 years of back pay, (attorney's exact words) and I already qualify for medicare. Even though I've got health insurance it's nice to know that I've got it just in case. I'm so happy about this, I was down today with all that has gone on in the past 36 hours and then having to buy 100 gallons of heating oil and $3.75 a gallon didn't help much. My back pay will certainly come in handy now, I can turn up the heat. Just wanted to share my news. Love to you all and I hope you all are feeling better.

Hugs,

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

Post Edited (Barbara Lee) : 1/4/2008 10:17:29 PM (GMT-7)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/4/2008 4:48 PM (GMT -7)   
Congratulations on your SSDI case! I know that is a relief for you. You will be in my prayers. How long will it take to get your biopsy results? God Bless you, Judy

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 1/4/2008 5:39 PM (GMT -7)   
Hooray for your SSDI case!!!! I'm sorry to hear about your mds advancing, but stay strong, nobody, not even doctor's know how much time we have on this earth.

Hugs =)

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/4/2008 5:48 PM (GMT -7)   
Oh Barbara, that is good news about your SSDI.  Finally you got a break with something!!!  yeah yeah yeah yeah   It would have been crazy if they hadn't given it to you, but I know how hard it is to get.
 
I've thought about you a lot and was thinking how sad it is that people like you and Carol are so seriously sick and frequently in the hospital and neither one of you are very old.  I'm sorry to hear that things with your health continue to decline, but I also know that you are hoping for a bone marrow transplant.
 
You are always in my prayers.  It was good to hear from you.
 
Love,
hippi
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 1/4/2008 7:53 PM (GMT -7)   
Hurray! I'm so glad at least one trial is finished and that you'll be able to turn up the heat! Hopefully this news is the beginning of a good streak for you.

Hugs,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/4/2008 8:01 PM (GMT -7)   
Wonderful, Barbara! I am soooo happy for you! Crank up that heat and enjoy keeping your tootsies very, very warm! This is time to celebrate!

Keep strong and know you are surrounded by our prayers for you!

Love, always, is coming your way, right through cyberspace and into your heart!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/4/2008 9:23 PM (GMT -7)   
*phewwwww* So happy for you Barbara. But I pray your health improves sis. I hope you'll keep us posted on your progress.

Blessings!

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

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/5/2008 12:27 AM (GMT -7)   
Barbara,

Congratulations! It's about time. I cannot believe that it took this long for you to be approved! That is great news in the midst of more medical things to deal with. If you do have a transplant, do you have a choice about where to have it done? I know that you are military; I just don't know if their hospitals do a procedure that is quite specialized.

Lots of thoughts and prayers for you. Rest as much as possible!

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[


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 1/5/2008 8:29 AM (GMT -7)   

Barbara,

Congratulations on getting the back pay.   yeah   That certainly is a huge relief for you.  You are in my thoughts and prayers.

Diane


Diane (ocean1)
________________________________________
Primary Biliary Cirrhosis 2007; UCTD 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Lunesta, Ultram PRN, Xanax, Darvocet, Ursodiol.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/5/2008 9:38 AM (GMT -7)   
Hi Barb,

It's been a while since I've posted as well so it's good to hear from you. It's about time you got your SSDI case approved! What's wrong with this system???!!! I hate to hear, though, that your condition seems to be worsening. You mentioned feeling more fatigued....do you have more pain as well? How's your family doing with all that's going on with you? I hope you're getting the rest and the support that you need at home. I miss you and will try to get on the chat room when I can. My prayers are with you Barb.

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 1/5/2008 12:13 PM (GMT -7)   
Hi Barbara,
I am happy something good has happened you deserve it. You are in my thoughts and prayers.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/11/2008 10:47 AM (GMT -7)   
Hi Emmie:

I wanted to respond to your question as to where I'll do my transplant. If/when I get my bone marrow transplant I'll got to the National Institute of Health. NIH is where the US surgeon general is. The military has a few military hospitals that do transplants, Walter Reed Army Medical Center does. Ft. Sam/Houston does and National Naval Medical Center is attached with NIH. Hence my care is at NNMC so I'll go to NIH. NIH is the leading hospital research center and I feel comfortable with going there.

Just wanted to pass on to you where I'd be going. Hope you're doing well and I'm pleased to have won my case. Now I've got to pay my attorney skull Oh well, I wouldn't have won w/o him.

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


tink 2
Regular Member


Date Joined Jan 2007
Total Posts : 371
   Posted 1/11/2008 1:03 PM (GMT -7)   
Yah Barbara now it is my turn..... yeah GREAT NEWS!!!!!!!!!!
               DENISE
Lupus since 2005, Fiberomyalgia since 2006,  sjogren's syndrome since 2005,  diabetes since 2006, Depression since 2004. who would not be with all of this.
 
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
 
                   Have a great Lupie Day Denise 

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