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Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 2/3/2009 12:22 PM (GMT -6)   
Hey all,
I have been back to the hospital again.  My middle child, my daughter, has it in her head that she must do something about me.  she says I forget my meds to take them sometimes.  said my kids have to do something about me.  and one of the things she wants to do is take charge over my life.
a home health agency just called me.  did my daughter send it.  she said the hospital contacted to them.  so maybe it is ok.
how many times do any of you forget to take your meds sometimes.  I take meds in the mornings and mid day and evernings.  and sometimes i don't remember. for this she thinks I am doing badly.  has talked my son into talking to my doctors because she believes myself unable to talk to my doctors.  SHe doesn't know how hard it is to get these meds for myself.  trying to juiggle medicaid and medicare and what they will or will not pay.  why would i not take my meds, if I was trying so hard to get them.
I am really upset about this.  and I usually I am not easily upset.  I am scared.
the last time i had an episode.  1-22-09 was when i went to the hospital. 
I have been diagnosed with MPD which is now called DID, or dissociative Idenity disorder.  or multiple personalities.  I had an episode.  my grandson was with me.  He called 911.  the diagnoses at the hospital is "altered mental state".  no stroke.  just an episode.  I could not remember for a few hours.  maybe a day.  it is called "losing time".  i have always lost time.  no one ever saw me before.  now they have.  and they mean to do something to me, for something I have done all their lives?
really scared.  I have a commanche brother, and he is ready to come and get me if the needs to.  and I would move to orlando florida.    but his name is winterhawk.  the only winterhawk in the phone book in orlando;)  but he talked to them and told me that I did not have to leave my house yet.  but he still I wishes that I would go down there so he could take care of me.
I just needed to vent.  a home health agency just called me.  they said they were notified by the hospital, and offered a CNA to do meds stuff, and do my housework. and laundry and stuff.  a neurologist saw me at the hospital.  they think it might be siezures.  I think it is still my episodes.  Dr. Peli is the neurologist I will go to, and he is trained in multiple personalities.  my youngest daughter said that it was like i was living in a memory.  I thought that it was 1963.  my son was two years old in 1963, and I was pregnant with my oldest daughter.  I have hid this from my entire family for all my life.  I didnt want people to know that I lose time.  and have not done it for a long time.  but this time my grandson was with me and I can't hide it the rest of my life.  they saw it happen.
just needed to talk to someone else about it.
thank you for listening
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 2/3/2009 12:40 PM (GMT -6)   
Hey Hester! I wish I had some advice for you. The only thing I can do is keep you in my prayers. Everything you are going through sounds terrifying and I can't imagine dealing with it. Just know that people everywhere are praying for you and keeping you in their thoughts. Sounds like your family is really worried and are ready to do anything to help! Keep your chin up and know that when these times pop always grow stronger from it. Keep us updated and let us know if their is anything we can do

Systemic Lupus,lupus nephritis, Raynaud's Phenomenon, Carpal Tunnel
Voltaren, Ultram, Prednisone, Cell-Cept, Imuran, Ambien,Furosemide, Flexeril, Darvocet, Iron pills
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." (Revelations 21:4)
I Can do all things through Christ who gives me strenth! (Philippians 4:13) 

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 448
   Posted 2/3/2009 1:09 PM (GMT -6)   
Hi Hester,

I'm sure what you are going through is very scary and not only for you but for your family as well. I'm sure this has to be extremely scary for your family if this is the first time they have seen it. And I'm sure they are trying to do what they feel is best to try and help you. Calling home health care and consulting doctors seems like it is only trying to love you and care for you the best way they know how. Try and talk to them calmly and let them know that you have always had these episodes but have always shielded them from them, perhaps that will help.

You are in my thoughts and prayers as I know this is a very difficult time for your right now. Please place your fears in God's hands he will guide you in the right direction.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/4/2009 10:26 AM (GMT -6)   
Hester, I'm sorry you are going through this - it's a lot to deal with on top of all your other health issues. I think seeing the neurologist is a very good idea to hopefully pin point exactly what is causing these periods of lost time (there could be a lot of reasons for this). I don't necessarily think the home health thing is a bad idea. They can help a lot and especially help keep your meds sorted out for you and having help with housework would allow you to save some of your energy.

It's nice to know that your brother is really there for you if you feel like you need a different place to go. Hang in there and I hope you will keep us updated on what you find out from the neurologist.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; 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



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Veteran Member

Date Joined Jun 2008
Total Posts : 675
   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

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   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

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   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

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   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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