Update from Ireland

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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 10/9/2007 2:37 PM (GMT -7)   
W'sell, I had enough, no treatment plan whatsoever yet, still I continue to deteriorate, imagine wearing sunglasses INDOORS and out.
I have told the HSe that I have been paying privately for a physio and a counsellor and from now on will sent the bill to the HSE, our health service.
They have agreed the treatment plan has been very inadequate and have agreed to meet me.
My neuro has agreed I apply for treatment at the LUPUS CENTRE in London to deal with sjogren's syndrome, crohns, hypothyroidism, and ?sticky blood under Prof Hughes.
There i will ask for the varous tests for SS and have an MRI and also advice on nuitrition, we don't have this breed here in Ireland.
I want dual co-operation between Irish docs and London, England.
They have messed me around long enough.
The bruising is all over my legs,
still no heparin,
had to end the asprin as i couldnt handle it.
Been very confused, paranoid and aggressive of late so decided to read the Stalevo leaflet you get with the med and a side effect is the former first two.
I have had more falls in the flat.
Twin helped me do a fab redecorating job on bedroom and bathroom and yesterday `i lost it when I heard the corpo were putting new windows in and did not warn us when they were coming AND are gonna knock out over three inches all round plus reinforce the lintels so as the rooves dont fall in.
They ordered too big windows for these 19c terrace houses. Never looked at the plans, had no architect and measured AFTER the ordering of the windows.
If anyone can think of anything dafter than that tell me AND they say any damage done to interior has to be repaired by tenant, even though most of us on this street are sick, poor or disabled and this is 'social housing' and we are on benifits.
Good news is ended therapy today and was happy about that. i achieved what i set out emotionaqlly and psychologically.
my chihuahua is stil a darling with eating disorder, psych problems and a potty neurosis eg she craps and pees anywhere she likes. Eating disorder - is manic for more, more more and has a body of a rabbit not a chi.
Today, car battery died on me and I lay on a sofa in a hotel with chi on chest awaying a jump start lead.
Then I locked self out of flat in my pyjamas and a neighbour had to get ladder and climb in the top window. When he had let me in he said "Have a good day!" and I just said laughing sarcastically HA!HA!
I am very weak, the head is buzzing I have a permenant pain in my leg.
The raynauds problem has now appeared on hands.
The pain in spine and neck is ferocious.
The gritty eyes and dry mouth awful.
Teeth real bad and may end up with no front tooth and no way to fill the gap.
Doc admitted that he said to me in a private ward that if I rang another dept that he\d have the phone removed but it was only a flipppant comment. I told the hospital that I know my english and so did the three women on the ward. It was anything but flippant. He also wrote that i was manic depressive on my charts and I have asked for that to be erased and retracted as I am NOT AND NEVER had a psychiatric illness. I was sexually abused.
All happening.
Off to london soon again earlier than anticipated AND I am billing the HSE for flight and treatmenst/consultation/tests.
all go here!
xx Slan - Ann
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.
Excema.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/9/2007 3:48 PM (GMT -7)   

My neuro has agreed I apply for treatment at the LUPUS CENTRE in London to deal with sjogren's syndrome, crohns, hypothyroidism, and ?sticky blood under Prof Hughes. Hurray!!  That is great news.  How soon will you go? 

I have had more falls in the flat.  Oh Anne, that sure didn't help with the bruising.  Maybe its a good thing you weren't on too much blood thinners.


Twin helped me do a fab redecorating job on bedroom and bathroom and yesterday `i lost it when I heard the corpo were putting new windows in and did not warn us when they were coming AND are gonna knock out over three inches all round plus reinforce the lintels so as the rooves dont fall in.
They ordered too big windows for these 19c terrace houses. Never looked at the plans, had no architect and measured AFTER the ordering of the windows.  Uh oh . . . you two have been working on this for a LONG time.  I'm so sorry it will be spoiled with the renovations.
my chihuahua is stil a darling with eating disorder, psych problems and a potty neurosis eg she craps and pees anywhere she likes. Eating disorder - is manic for more, more more and has a body of a rabbit not a chi.  I wonder if the chi has a thyroid disorder . . .  . I believe they do eat more than you'd think because they are generally more nervous.
I locked self out of flat in my pyjamas and a neighbour had to get ladder and climb in the top window.  Oh my gosh . . . sounds like you are a Lupan!!!

I am very weak, the head is buzzing I have a permenant pain in my leg.  Oh sis, I hope they will help you deal with that . . . it makes it so hard to sleep, doesn't it?
The raynauds problem has now appeared on hands.
The pain in spine and neck is ferocious.
The gritty eyes and dry mouth awful.  I hope they deal with ALL of these issues.  You have so much for them to figure out.  Will you be staing in a hospital or staying nearby and going back and forth?   Or going back and forth from Ireland?

So glad you will finally get some kind of treatment plan.  Let us know how soon you'll be going.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 10/9/2007 9:16 PM (GMT -7)   
Ain't THAT simple! There are forms you see, to fill out - like! Alot of em, and only treatment specified by consultant HERE can be done! Its not as if England get the go-ahead to do what they want but I am applying with a letter of my own SPECIFYING what I feel I need and how it is to be done. There are a few things like 'means assessment' and solitors advice etc. All sorts of things, but I am flying to London on 17th Octo and going for an appointment privately - er, I shall be b illing the HSE.
We are supposed to have a public and private health system but even though I have private health care I usually use the public where I can cos I/ve so little money but our system has many many cracks as I am sure systems in every country has, bar the scandanavian countries which I believe have an amazing health sytem but again the people pay a huge whack but they usually kjnow they will be treated well and appropiately and very well.
xx Ann
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.
Excema.

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

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