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Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 4/25/2008 11:11 AM (GMT 0)   
#well as usual we have crisis after crisis.
Had to leave last accommodation as they had no beds.
came to hotel, no internet connect here or in last place and really felt vulnerable and exposed.
twin had to get in taxi and come over to calm me.
my rage and distress so bad that I rang the prof at the Lupus centre and he said that these kindo rages and mood swings are quite typical and common. Are they?
I just flip and scream abuse and start hitting out.
whether its the extreme exhaustion or something neurolical as we know I have neuro implications I dont know.
also tried to contact a few experts in the photography fields as here in London would be the centre of excellence, re how to do photography being so disabled. No joy, in fact one photography lecturerer at a very big dcollege just slammed the phone down when I answered No, I wasnt a student at the college and no I did not want to do a cdourse. That was after telling him I was in a wheelchair, had a muscle wasting disorder and would like a chat with an expert on how one goes about being creative etc.
also the taxis wouldnt take my wheelchair so at times was sitting ibn cold for over an hour in the hope one would, which did eventually.
I am really shattered at this point
I am here virtually alone. The irish health service toldme yesterday i could have taken an escort with me but they didnt tell me that BEFORE I came. Nor did they tell me how much they would frund me and I was terrified of spending my governments money.
the trip has been fraught.
I am being admitted into a general surgical ward which I am not happy about cos of the autoimmune probs but everyone says its ok but I am not sure.
it is also a mixed ward and I have been raped in the past.
I cannot take any mobile in with me
It just gets better and better!!!
what do you think about the general surgical ward folks, is it ok?
The medical doctors are top of their field but I worry about catching some bug.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Regular Member

Date Joined Mar 2008
Total Posts : 89
   Posted 4/30/2008 9:43 AM (GMT -6)   


I don't know anything about the surgical ward, but just wanted to let you know how sorry I am that you are having a rough time. The thing about the wheelchair and the cabs is just horrible and would get anyone down. I hope everything turns our okay for you.


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 4/30/2008 11:07 AM (GMT -6)   
I hope you are doing better. I wish I could do more than offer positive thoughts and encouragement.
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, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/30/2008 11:16 AM (GMT -6)   
Hi Ann,
I"m sorry things seem to keep getting more and more 'dramatic" for you.  I understand the rage thing.... I totally lose it sometimes, and wish I had a punching bag to take out my anger and frustration.  It's interesting that you mentioned this.  I never really thought of it as a manifastation of lupus.
I didn't know you loved photography!  I'm a professional photographer!  I specialize in weddings, families, fashion, babies, pets, etc.  I love my career so much.  The creative outlet is amazing and I really groove on it!  Even when I'm feeling poorly, just getting out with my camera to shoot a wedding or hit the mountains for some landscape photography is wonderful!
I have some ideas about what you can do regarding photography and disability.  If you want to email me, my address is on my profile.  We can chat about it.  It's wonderful that you want to get out and do this!!!  I'm excited for you! 
Talk to you soon,
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 4/30/2008 11:04 PM (GMT -6)   
I just wanted to say, I pray everything gets better for you. Sorry you are having a rough time. God Bless You, Judy

Forum Moderator

Date Joined Jun 2006
Total Posts : 1532
   Posted 5/1/2008 8:14 AM (GMT -6)   
Hi Ann.  Working in hospitals for many years, I think the surgical ward is an excellent place for you to be.  Patients on the medical wards have every disease you can think of while surgical patients are recovering from surgery that can be as simple as getting tonsils out to having open heart.  Being on the surgical ward should really reduce your chance of infection.  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol actonel ambien multi vitamin C flaxseed oil  PRN: gabapentin promethazine xanax
             Better living through chemistry    Donna

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/1/2008 6:27 PM (GMT -6)   
Hi Ann,
   Wow! you have been through the ringer and back! I hope you have better luck this time. I agree with Donna about the surgical ward. It should be safe as far as infections go. Please hang in there and take care. Keep us updated. You are in my thoughts and prayers.
                                             (((Hugs))) Babs
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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