Posted 2/4/2009 1:44 PM (GMT -6)

Hester - you've dealt with this all on your own for so long....maybe you can feel some relief now that your family knows how hard it can be for you, and wants to help you any way they can.  It is hard to keep meds sorted and scheduled....perhaps your doctors need to be sure the mix of your meds aren't causing some of this.  My sister had some "lapses" when she was taking both Zetia and Lipitor.  It scared her.  She was told to stop the Zetia and that took care of the problem.   I know you're dealing with a lot.....keeping you in my prayers. (((Hugs)))


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Posted 2/4/2009 1:58 PM (GMT -6)
I am so sorry your daughter feels the need to take over your life. I understand how frustrating that must be. If it comes down to it I would insist on being with your brother. It would likely better for you. He would likely understand your DID easier. You might also tell your kids about the diagnosis. It may help. It may not either way they would at least know what was happening and maybe be less scared.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

Posted 2/6/2009 8:10 PM (GMT -6)
Hi Hester,
I would hate to be in your shoes. However, I used to work in a Nursing Home. I also have disabilities, and recieve SSDI. If you recieve SSDI, you can go and join a program for adults with disabilities. They can provide you a care giver for so many hours. You really dont need much help. You just need reminded to take the medication. Also, you might want to tell your family that you have had this for a very long time, and it scared you to tell them because you didnt want them to think you can't take care of yourself. Tell your daughter you feel that you can't be independent with her pushing so much on you and that you know she means well, but when you need the help you will ask. If you dont want the people with you at the doctors apts, you have your rights, and you can have them leave. By law, it is required to have your permission for anyone else besides the patient and medical staffing.
Smurfy Shadow
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D

Posted 2/7/2009 12:26 AM (GMT -6)
Hester I'm sending you big hugs and lots of positive thoughts tonight.  YOur "missing time" moments sound scary. They do sort of sound like seizures in a way.  My simple partial seizures had a sense of deja-vu all the time.  Like I was reliving a dream I had, or a moment from a different day. It was really disurbing. I don't get them anymore. I really hope the answers come soon for you.
Talk to you soon okay,
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

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

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