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Ann Ireland
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Date Joined Apr 2006
Total Posts : 511
   Posted 11/10/2007 12:36 AM (GMT -6)   
Which order?
I will leave the good til last. I am in AWFUL pain. the palms of my hands and my feet and knees gone absolutely MAD. the hands and feet are boiling and burning and the feet are as red as beetroot. I was experiencing raynauds symptoms but I have never seen the feet this red and slightly purplish colour and the palms of hands agony as is the surface of knees.
Anyone recognise these symptoms and have a wee solution?
Very tired and not sleeping, I guess that goes with the neuro stuff.
I am shattered exhausted and VERY depressed.
But now the good part.
I LOVE the college. I am learning alot, the people are just lovely, everyone so happy and helpful.
The GRUB (food) is great so I have a dinner before I leave and it only costs me EUR3!
They even brought in a better table for me and my wheelchair as they felt the one I was on was too low.
It was a large table and they said "Ann you can go home, as we want to set up a better work place for you" Isnt that so nice? I am very, very happy there and have met a lovely girl who has lunch with me.
I am lonesome when at home but I suppose you have to be grateful.
they also have a counselling service which I think I will try and avail of to deal with my multiple disabilities I have now.
xx everyone.
Oh, the heparin is coming on stream hopefully next week, the junior neuro at the neurology depart is sorting it. Would you trust neurology to deal with a haemotology problem?
Been to the dental hosp too, fast tracked. I have gum and bone disease, I have to be anaesthesised for them to 'get in there'.
Dentristry is not like America, its a bit barbaric!
Very cold here now.
Dogs doing just great.
Heh can anyone explain the 'chat line' part of this site. Does it mean you can actually talk to someone via the net and this site?
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

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2007 10:38 AM (GMT -6)   
Hi Ann . . .

The chat screen will allow you to type back and forth with several others. Usually there is no one in there. If you post a message letting people know you want to chat on "Monday at 8:00 pm EDT" then you might get one or more others to join you. When you pick a time, make sure you consider the difference in time around the world so you will be more likely to have someone join you.

Mom46 (Babs) and I used to chat at 2,3,4 o'clock in the morning as we would notice that both of us were on the boards and couldn't sleep. So one of us would just post a message to meet at the Lupus Chat room. If you sign in and try it out before you have an actual chat session, it would be helpful as it takes a bit to see how it works.

Sorry you are having the hand, feet and burning issues. I don't know how to help you with that confused sorry. Hopefully one of the others will have an idea.

about your dental issues . . . if you take prednisone, you'll want to get permission to up your dose the day before and the day of your dental work and then when you feel ok, you can taper back down. The stress on your body of having that work done can really cause a lupus flare and make all your symptoms worse. If you don't take prednisone, make sure you REALLY rest well before and after the dental work . . . because it will be a stressful day.

SO glad that your college experience is going well . . . Wooo Hooo!!!! and you've got a doc on board with the heparin!! It would seem that, as long as he is monitory CLOSELY your blood work, that it would be good to get it started . . . and then the proper doc can take over monitoring. Initially the blood work is done VERY frequently to make sure the blood doesn't get too thin. After you get consistent and appropriate readings, they'll likely start checking it monthly.

I hope you get some other responses for your questions!!


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

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 11/10/2007 12:15 PM (GMT -6)   
Glad you like your school but sorry you are having problems.  Periodontal work is tough and I had it 30 years agoa and glad I did.  It is so important to your general health.
I also have raynauds and my fingers are slightly purple now even though sitting in a warm room with a warm fleece jacket.  Mine was worse in the first year and a half but has gotten a little better this year.  I am an outdoors/hiking/skiing person and tested my condition last winter in temps as low as minus 10F.  Did OK but dressed warmer than ever and used layering.  Merino wool socks work the best and there are merino wool sock and glove lines that you can put under your gloves when outside. 
Inside, just dress warmer on your torso and it will help.  Raynauds can be weird and I have experienced purple fingers and toes while walking in 65-70F degree weather and felt better when it is much, much colder. 
There are meds that can help more serious cases but I have avoided them so far.  Now that it is a little better I hope to never have to take them.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

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