have my appt today


Gone, but who cares huh
with the specialist, i have vascilitus, they arent sure which one lol, as i have had it over a year and apparently thats not usual, and there is no sign of it abating :( its getting really annoying now, i just know i have waited 3 and a half months for this appt to be told they are no further on and they want more blood,

i want to shout at them cos im sick of having this horrible rash all over me, but it isnt their fault and they have tested me for every known cause, its just very frustrating, i cant wear skirts or dresses, i do wear short sleeves cos i would have died of the heat in the summer had i not just braved it out and prepared a few choice phrases in my head for anyone rude enough to say something,
but im aware of the stares, and as the weather gets colder iit gets redder, so if any of you know anyone who has had this and found a way of getng rid of it i would take any advice,
Hiya Tcdt, Im not sure what it is, cant be nice for you, have they been helpful at all??
hi vicky, they have given me a rheumatoid arthritus factor blood test, which apparently in the raft of other tests they forgot, but i wont know if thats is a factor until jan 2nd as thats when my next appt is, they are also thinking about starting me on dapsone, as that is sometimes used with vascilits, i came home and looked it up and they use it to treat leprosy amongst othjer thing :eek: but again wont know about that till jan, the nurse was lovley she could see i was disappointed in getting no further and told me i was lucky to be as well as i am as she had nursed people will vascilitus and they were very ill, she also told me she had much admiration for me dieting so successfully on cambridge with this condiiton, as it makes you very tired and she said it must have been hard, i felt too guilty lol as it hasnt really been except for the tiredness,
so im in limbo again till jan, :(
Just had a look see about it and it all seems very confusing, Im not surprised you are a bit down about it.

Keep me updated, and if you need anything pls let me know x
thanks, i only really get down about it on the days i go to the hospital, i will be fine tomorrow, just have to get on with it really lol :)