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joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 5/22/2008 8:46 PM (GMT -7)   
Barb: Been thinking about you..  I hope you found the right docs. for yourself wishing you well. God bless. Debbie   
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


georgialady
Veteran Member


Date Joined Aug 2004
Total Posts : 1169
   Posted 5/22/2008 11:07 PM (GMT -7)   
barb--hang in sweet thing this old world has to get those right doc's very,very sooon
god bless you and sleep well[rest]

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/23/2008 9:13 AM (GMT -7)   
Hi Debbie and Peachypeach:

I've not yet found a doctor to give me a second opinion. My current PCM is managing most of my care as I hate my rheumy. Of course I've got a whole slew of specialists. My oncologist I like a lot and don't want to change him, I like my cardiologist and pulmonary doc and of course my internal medicine doctor is great. It's just my rheumy I don't care for.

Treating me is very difficult as the blood cancer and lupus are feeding on each other. The meds I take to treat my lupus and RA are bad for the blood cancer. The blood cancer is advancing and will continue to do so until it's full blown leukemia.

I'm currently having a huge flare, I've got sores in my mouth and throat, severe joint pain, shortness of breath, chills with sweating, fatigue, my husband said this morning my eyes looked like a raccoons eyes. I saw my pulmonary doctor yesterday and I need a right sided heart catherization, I'm not sure when it will be done, one doctor is talking to another doctor, so you know how that goes. Hopefully, it won't be the week before I'm due to go to Atlanta to meet up with my fellow lupuies.

Anyway, thanks for offering up your well wishes. I'm sure I'll find someone soon for my second opinion. Hope you both are feeling well or at least better. Have a great Memorial Day weekend.

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/23/2008 1:35 PM (GMT -7)   
Barb, thanks for the update. I am sorry that you are having such a bad flare and that you need to have a heart cath.

I really hope you can eventually find a great new rheumy to work with you on your lupus and fibro. Doctor hunting can be exhausting though, especially when you have so many other doctor appointments already. Would one of the docs you really like be able to give the names of any good rheumies?

I hope you get to go to Atlanta - I think it would be so much fun and so uplifting to meet up with some of the wonderful healingwell lupies. I remember going to the lupus walk last fall and even though I didn't know the other people there, it just felt great to be in the company of other lupies and to know I was surrounded my others who were a lot like me.

Please keep us updated whenever you are feeling up to it. I keep praying that you will be able to get some relief from your symptoms.

Lots of 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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/24/2008 3:12 PM (GMT -7)   
I went looking for you Barb to see how you are doing, sorry to find you not in great shape.
I hope things improve soon, hope you get to meet the luppies.
You deserve a break and are an inspiration to all, me anyway!
xx and hugs,
ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/24/2008 5:34 PM (GMT -7)   
((((((((((((( Barbara )))))))))))))))

Hugs and 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, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/24/2008 6:26 PM (GMT -7)   
Love and best wishes and prayers. (((((hugs)))))
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/24/2008 8:33 PM (GMT -7)   
Barbara,

I love you, am thinking of you and praying for you. Hang in there sweetie. There are tons of people who feel the same way that I do about you. You are one of a kind and an inspiration to all that meet you and know you. God has blessed me with a good friend.

Love,

Linda
Believe in yourself.  Be kind to your fellow humans and animals.  Take time to smell the flowers and the coffee. 
 
And by all means, when you are down, ask me for help.  I will be there.
 
Linda C.


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/27/2008 2:00 PM (GMT -7)   
Hi Hippi, Rosie, Marji, Ann, and Linda:

Thanks for the well wishes all. I appreciate your support, I have to admit I'm feeling really low these days and I'm not feeling physically well either. I'm frustrated as I can't seem to get this heart cath scheduled and I'm still flaring up a storm. Hippi my doctor is unwilling to help me find a new rheumy I've got to do all the leg work myself, she plans on speaking to whomever I choose but nothing until I make up my mind as to whom I want to see.

Still coping with lots of things and honestly I'm very close to giving up, most days as of late I wonder why do I bother to even try to stay strong. Anyway, I appreciate your thoughts, prayers and well wishes. I don't know what I'd do w/o you all.

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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 5/27/2008 2:58 PM (GMT -7)   
Barb: Hang in there, you will find a rhumy to treat you. I'm sorry you are still in a flare, it's got to be all the stress you are dealing with. Barb don't give up we are all praying for you.(((((hugs)))))) Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/27/2008 6:15 PM (GMT -7)   
Barb,
I know you must be exhausted. I can't believe your doc won't get you a better rheumie. If there is anything I can do to help, my email is in my profile for a while. I'm praying for you. How about your oncologist--can he help you find a good rheumie? I think you said he was good. Maybe the nurse there would help. Love you Barb and hope you get a break soon.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/28/2008 8:11 AM (GMT -7)   
(((Barb))) I pray for the day when you'll write to tell us that you're having a good day. I imagine that just one good day would be a godsend. Take care of yourself dear friend and we'll do what we can to keep your spirits up. Even though it's difficult and stressful for you, I'm happy to hear that you're continuing to search for a new rheumy.

Love,

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

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