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New Member

Date Joined Sep 2012
Total Posts : 7
   Posted 2/14/2013 12:56 AM (GMT -6)   
I posted here awhile ago about suspected lupus. Rheumy dx UCTD, but wants to biopsy the malar rash, but not on my face, so is waiting to see if sun exposure in the summer shows rash spreading to somewhere other than the face he can biopsy to see if it instead lupus. Also diagnosed with gastroparesis, GERD, fibromyalgia, and after taking reglan for gastroparesis and having a dystonic reaction to it, tardive dyskinesia/dystonia. On prednisone, plaquenil and percocet for UCTD and Fibro, Dexilant for GERD, Erythromycin for gastroparesis which is not working well anymore, so back to puking, Zofran, phenergan and compazine for nausea, and Artane and Amantadine for the TD. Have lost hair, and lost about 50 pounds in 3 months from the vomitting and no longer having a period, but because I was overweight they don't seem super concerned about that at this time. Spent 10 days in the hospital in January for dehydration and electrolyte imbalance when I was unable to keep anything down and they acted like I was a drug seeker because they said the pain I was reporting did not make sense to them, even though I never once asked for a pain med. In and out of the ER for fluids and I feel like a psycho anytime I have to go in because they make mention of how many times I've been there before every time even though I am sent in by my physician. I take more medication than food. And I have 3 little kids and zero energy and all those people who make sure to post publically on facebook that if I need ANYTHING just ask, only to say no EVERY TIME I really need help and I know the grandparents are overwhelmed, my husband is out of pto and my medical bills are garnishing his check and I haven't been working, and people keep sending me articles about how diet soda could be the cause of my problems, or asking if I'm really just depressed (hell yes I am) if I'm not just exaggerating just a bit, or if it's really THAT bad. Mood swings from the prednisone are making it increasingly difficult to resist punching people:) and I'm just tired of it all!

Ok, I'm done now!


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 2/14/2013 2:07 PM (GMT -6)   
Welcome back.
It's frustrating trying to deal with this illness and all the other problems that seem to come with it.
You're welcomed to come here to vent away and ask questions.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Feb 2013
Total Posts : 13
   Posted 3/1/2013 1:00 AM (GMT -6)   
Hi, I'm also new here so prob not the best person to offer advice, but I'm sure others w/experience will help as well. I did want to say this though,"You have a ton o stuff going on"!! If you are stii having all these probs then I just might say that something is not being done to address your pain and disease. I do understand that transportation issue believe me. I cannot drive...doc's orders, and if I could I would not be able to get transportation becuz I couldn't get Medicaid. I have to depend on my daughter and husband to take me ....when they can becuz they work! I hate it! I used to drive before my back was all messed up and I worked and I did my own shopping and did gardening and I did commissioned portraits......u get my point? I was completely independent now I'm completely DEPENDENT! It just plain sucks! We have to find ways to cope and that isn't easy, but if we don't we'll be on the psych ward somewhere...or I will be Plz take care and I sure hope you can find some resources to help u out physically and whatever else u may nd! Feel better
Lupus, Diabetes, Addison's Disease, RA, Bursitis, Spondylosis, Scoliosis, Degenerative Disk Disease, Spinal Stenosis, Bulging and herniated disks multiple levels, Compression fractures due to Osteoporosis caused fr Prednisone ;)

Regular Member

Date Joined Jul 2012
Total Posts : 73
   Posted 3/7/2013 3:25 PM (GMT -6)   
Hi! I am so sick of it also...I had 2 flare ups in 3 days and am still in pain now. My dad came to visit and as soon as he hugged me the tears just know, daddy's little girl sort of thing. I just want to have the energy I used to have and be able to have both my grandbabys over and not just one at a time!! But of course I know that it isnt going to happen anytime soon.

I do try to pray alot and depend on the Lord for guidance and He comforts me...but when I remember Im human the tears rolll alll over again.

I hope you feel better Amy and hang in there....what more can we do?
The offer still stands- John 3:16
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