09-07-2009, 09:48 PM
hi everyone sorry have not wrote in while have been bedridden not well have been on mexotrexate for 2 weeks now it has caused nausea and constantly going to toilet am still very fatigued having trouble walking and holding on to things dropping items all the time even typing is hurting me having to get help dressing. i am having so much trouble trying to get appointment for occupational therapist and physio there is so much red tape they are constantly asking me to ring different departments apparently i am not old enough to get help i have to be age pensioner so far i have rang 6 different departments and even if i do finally get help i have to go on waiting list which could take several months to get assessment meanwhile i am still washing in basin goverment housing still saying may not get transfer where i have shower instead of bath until next year as they have to make special modifications for me. where i am living is stressing me greatly there is always arguments and fighting and threatning behaviour police always being called they jump over our fence in the middle of the night and leave faeces on our yard there is gang fights and stealing and drugs i cannot sleep because of noise and i am frightened local doctor has told them it is urgent they move us but they do not listen they told us this was a safe place but is not i am so very angry and depressed right now iam crying just writing this letter. stephen is still unwell i hope to get some relief soon i just feel like giving up some times it is only the love of my family that keeps me fighting i just wish the goverment would understand you do not have to be old to be sick why is lupus such a hard disease to get people and doctors to understand how we feel i get people saying to me that oh its not that bad you,ll get over it at least you don,t have terminal disease and i suppose they are right and i am grateful i do not have cancer and i do not want to complain but sometimes i just feel awfull i just wish people could understand what we suffer with lupus and not judge us it is so frustrating none of asked for this and we try to cope the best we can. well thats my ranting raving for today sorry everyone please all have a happy painfree day love and hugs always kim l.