New to this site.
Hello to everyone here.
I have just joined you all, as the wife of a lupus sufferer, from Australia.
It has taken months for us to finally get through to the medical fraternity that my husband Kevin has lupus.
I did mention this possibility to his GP and also to my GP and was told by my GP, that no, his problem wouldn't be Lupus and Kevin's own Dr. ignored my thoughts. It doesn't take Einstein to work out that this is a possibility though, when his Aunt has it and one of our son's also has it, at the age of 30, so for the last 9 months, Kevin has had to suffer greatly, with and inflamed pericardium, which was treated as a warning heart attack, then mild seizures one day and night, that were put down to his medication, that he has taken for the last 9 yrs without any problems.
Finally, when the rash on his face became very, very obvious and the photos that I took of them were ignored, I went onto the computer and did some research, then presented it to his Dr. along with some blood test results. I had already started him on Prednisolone, which he had taken on and off for years, for asthma, and with the evidence that I had found, plus what was quite obvious and had been for months, she agreed with me and he is now improved greatly.
I do think that he has had this for a number of years, but the Prednison treatment for asthma has kept in under control. However, with the episodes of cancer, a staph infection when he had the biopsy, then a big operation for the prostate cancer, his sister passing away while he was in hospital, then his brother in law dying of lung cancer, had all caught up with him and really bought on a flare up.
Now he has to learn to wear long sleeves and long trousers in the sun, which in our part of the world is rather hot in summer, and not to overdo things, as he breaks out is major sweats if he gets too hot.
Anyway, enough of my raving on.
It is great to have somewhere to go to talk over the frustrations of this disease and to know that you will all know where I am coming from.
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm SO sorry that it took so long for your husband to get a diagnosis, but am happy that his doctor has finally listened to what you have been saying all along; I can imagine how frustrating it must have been for you when you kept suggesting Lupus and the doctors kept ignoring you, especially with something as obvious as a rash! :?
hello and welcome,
thats the trouble in australia the doctors don't want to listen to you. it took me seven doctors before i was diagnosed and i recon personally i have had it since i was about 14. Where in this great country do you live, i am in brisbane and the last couple of weeks we have had up 38 degrees and i have to wear long clothing and can be very uncomfortable i feel for you all
Shane , I live in Griffith , in the Riverina of New South Wales, where our average temperature in summer is around 38C, with it often soring to around 42 in January and February.
As Kevin has spent all of his life outside, being a farmer, he finds it hard to have to stay indoors and to wear long clothes all the time. He is also very heat intolerant, breaking into drenching sweats if it is the slightest warm.
He has learned the hard way in the last few days that he cannot go into the heat in shorts anymore, as he has broken out in a discoid rash all over his legs and up his arms, which was a bit uncomfortable for a while.
However, a cool shower and some Celestone ointment has helped him and it is improving. One hard lesson learned.
I am thinking of buying another sewing machine and teaching him to use it, as I make all sorts of ladies handbags and shoulder bags for sale and also do dressmaking, so he can help me a bit.
Thank you for your welcome. I do find it hard to find others to talk to who know what goes with this.
We were at a BBQ today at our eldest son's place and there were members of his wife's family there who asked what had been wrong with Kevin and when told, either said, "Is that all" , or what the hell is that, so there is little understanding of just how sick he has been and the consequences of this illness.
I use to have a small property and maintaining it as you know involes alot of exposure to the sun also alot of hard draining work. One of my doctors i had ran test on me and found out that i have alot of allergy's related to the land (allergic to 11 grasses,8 types of trees,horses and cows fur etc)and that the rashes i was getting were caused from these so his helpful advise was to move away. so i packed up the family and move to suburbia and my rash was still very present after some time,we relised it was nothing to do with the land but to do with the sun. i also have issue at work which i recon causes my flares. i am not telling you to move cause we now wish we had the property and i think i could still try my best to keep on top of thing (mind you i dont think i am as sever as your husband) i kick myself now for selling it but you think your doctors are right.
As for him keeping cool i often wear some shirts made by kakoda and they are great cause they have air vent all over the back under arms and do help with the cooling and the long pants i wear are like hardyarker and have loose bottoms to let air flow up them.Also don't go out in the middle of the day if i have work to be done i start as early as and stay no later then 10:00-10:30 go inside shower and change into cooler clothes then put all the gear back on later and go out at about 4:00-4:30.Mean while appling sunscreen heavily morning/afternoon.
Unfortunately people don't understand, my own sister, when i told her laughed and joked saying i will have to strap a tourch on my mower now a mow the lawn at night. she has changed her tune now i explained abit more to her, alot of my work mates don't understand and probably think what a sook you know "suck it up".
Read into this site there is alot of knowledge and support they have answer alot of my questions and are there when you need them.
hope this helps you
Thanks for the information Shane.
We no longer live on the farm , after moving into town during one of the droughts in the early 90s.
Kevin had his back badly injured in a work related accident, so now we are retired, but as he was a very good and keen sportsman, playing tennis at A1 level in Brisbane when we lived in Beenleigh, also playing cricket and golf, off an 8 handicap, he really misses being able to go out and have a game of whatever was going at the time and has become quite a hermit, pottering around in the garden and looking after the budgerigars that he breeds.
I did suggest that he goes to the local club and play cards or darts, but he is reluctant to do so, because , sometimes his back will jack him up and he has to walk, so he doesn't want to spoil a game.
I am a bit of a loner, not shy, but rather reserved and dont mind my own company, so didn't take much notice of him wanting to stay at home, but to be quite honest, if he did do something like the cards, I do think it would help him no end.
Do you socialise much?
I have had to change my life style majourly as i grew up near the coast so fishing is a love of mine, i love going to the beach,waterskiing,playing golf,tennis,cricket, doing all the fun stuff. Since i have known for sure i have lupus it has all changed. but you can work around it in some ways as now if want to go fishing it is at night only, if i want to have a hit of golf there is a local driving range that does night golf there open to 9pm so i go there, one of my mates is looking into a golf coarse on the gold coast thats apparently have night golf as a coarse so you have a fluro ball and the fairways are lit and is just like day time.I steer clear of water thru the days, dont go look at the ocean etc as the reflection is a bad for me. i used to do alot of four wheel drive out in the scrub if i do that now i usally try and stay within the hours i said before.
on this site they talk about rhuemotologist i am in the process of finding one of these as my dermatologist is a total *anker, by the sounds of it rhuemotologist are more specialised in this field so i dont know what type of doctor you see now but it could be worth a try. i hope he will listen better and sort of understand more.
Just remeber dont over exert himself, do only as you feel comfortable with, i do what i can when i can, but if i need a rest i rest there is always tomorrow.