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georgie
11-04-2008, 05:16 AM
g'day everyone , I contracted a nerve syndrome called rsd 4 years ago that set the wheels in motion for scleraderma followed by my recent diagnosis of SLE , I have read a few of the posts here and it seems I do have a lot of he symptoms you all have , rash over face sun sensitivity ,tight skin, itchy skin , inflamed joints and tendons ,fatigue , muscle weakness ,skin sensitivity , vision problems , hair falling out etc etc , I live in australia , and we are just coming into summer now and I am dreading the heat it seems that all my symptoms exagerate them selves in the heat of summer ,but then again in winter the reynauds kicks in pretty bad to so I guess it doesnt really matter what season we are in extreme temperatures are no fun , I am coming up to 56 years of age but due to the scleroderma I only look like I'm in my late forties and getting younger looking by the day !!! lol well thats me , I look forward to getting to know you all hugs georgie

coltsfan
11-04-2008, 06:04 AM
Hi Georgie,
Just wanted to stop in and say hello. There are a lot of really wonderful people in here, you'll see. I look forward to talking with you and getting to know you.
Robyn

KathyW1958
11-04-2008, 06:51 AM
Hi Georgie,
Welcome to the site. This is a great site with a lot of really nice folks with a lot of information. My name is Kathy and I will be 50 in December. I have SLE, Lupus and several other auto-immune disorders as you can see by my signature. I look forward to getting to know you and hope that you keep posting.

Hugs,
Kathy

Saysusie
11-04-2008, 10:53 AM
Hello and Welcome Georgie :lol:
I'm glad that you found us and that you decided to join us. Please keep reading the posts in these forums; they are very informative and will probably answer most questions that you have. If not, please know that everyone here is more than willing to answer your questions, research information for you, and share experiences with you.
You are correct about us suffering from summer sun as well as winter's cold. It is frustrating at times, I know. In the hot summers, my Raynaud's is still active, so I have to sleep with a heating pad on my feet and an electric blanket (in summer temperatures in the 3 digits!). You can only imagine what I have to do to stay warm in the winter!!!
You are amongst people who understand and who truly care. Once again....Welcome.

Peace and Blessings
Saysusie

georgie
11-05-2008, 12:53 PM
thanks coltsfan,kathw and say susie for the welcome , I think I really need to be here , I think that the best way to combat this syndrome is to understand it , you know that old saying "know thy enemy" well I figure I need to educate myself on it and learn its traits so I have a better chance of learning to live with it ..... hugs georgie

coltsfan
11-05-2008, 01:09 PM
I totally agree. I checked out every book at our local library and went on the internet looking for more information. That's when I found this site. It has been a wonderful source of information, support and friendship. Some of these guys should really consider writing a book. The language they use is so much easier to understand than some of the books by the 'professionals'.
Robyn

Saysusie
11-05-2008, 05:25 PM
I am and ardent advocate for Lupus patients to educate themselves, their loved-ones and even, sometimes, their health care providers. So you are absolutely right about educating yourself and we are here to help you do that as much as we can!

Peace and Blessings
Saysusie

Oluwa
11-05-2008, 06:36 PM
Hi Georgie..

Welcoming you with open arms..hugs...

Yes, education is key..through a book, your experience, another's experience. I am always learning, especially from here.

Saysusie is our source, our book of reference, our walking text and a wonderful friend....

Looking forward to reading more of you, Georgie...

Be well,
Hugs,
Oluwa

Oluwa
11-27-2008, 06:05 AM
Hi Georgie..

How goes life...checkin' in on you?

Keeping well, I hope.
Hugs,
Oluwa

georgie
11-27-2008, 02:06 PM
g'day oulwa , funny you should ask me how I was doing today ,as my anwser is terrible ! I'm in a bad flare at the moment due to my hellish trip to my doctors appointment yesterday , because I cannot drive any more I had organised a lift to the hospital by a volunteer organisation that drive disabled people to medical appointments ,its a great system BUT yesterday I had a driver whos cars air conditining did not work and it was a hot 30 degree day the trip took three quarters of an hour , the sun was beating down on me thru the car wind screen all the way I was so so over heated I got a headache I was flushed by the time we got there , feeling real sick when I got into the hospital I went to the desk and the nurse said oh dear we shifted your appointment to december 4th !!!!!! didnt you get a phone call to confirm this !!!! I was so angry !! so headachy so nauseaous and so fatigued , all I could do then was brace myself for another three quarters of an hour baking in this hot car , when I got home I was so distressed from the heat I started to vomit and to make matters worse my nose started to bleed , I was a mess I knew it was all heat distress so I got into a luke warm shower still with a blood nose and dry reaching , eventually things settled once I cooled down , I layed on my bed and woke up 13 hours later !!!! so that was my doctors visit , oh the nurse appologised for forgetting to ring me to tell me she had moved my appoinment but after my experience I'm afraid her appology is not acsepted hugs georgie

KathyW1958
11-27-2008, 03:42 PM
Hi Georgie,
Wow that is terrible. It seems like since you got in there they would have seen you, but then again I had a simular situation happen to me several months ago in the hottest part of the summer. I drove all the way to the doctors office only to find out that I had made a mistake and that my appointment was not until Sept. 4th instead of August 4th. I could do nothing about it, but leave and feel like a fool and get a darn good headache for my troubles. I too took a cool shower and hit the bed not to immerge until the next morning.

It is terrible to have to ride in a hot car with no air conditioning. Do you have any children that could take you to the doctor? I hope that the next person that takes you to your appointment has a working air conditioning system in their car. I hope that you get to feeling better.

Hugs,
Kathy

rob
11-27-2008, 05:59 PM
Hi Georgie,

Welcome. Sorry you're having a bad flare. I know how you feel. Having no A/C in hot weather just kills me too. 30 celsius is about 86 f. and that's plenty hot. I used to live in Arizona here in the states, and the summer temp there was 110f, or for you, 43c, in the summertime and fall. I finally had to move to a cooler climate as the temperatures either were causing me more flares, or making the ones I already had even worse. I would get the most terrible headache, and feel like I was about to literally pass out. I hope you get feeling better soon. Anyway, I just wanted to say welcome to our group.

Rob

Saysusie
11-28-2008, 10:01 AM
Hi Georgie;
I know how angry you must have been, both at the forgetful nurse and the terrible conditions you had to endure on the drive to and from your non-existent doctor's appointment. Your symptoms were exactly the same as my symptoms on a drive to Arizona with untinted windows. Only, it took me the better part of a week (or more) to recuperate :lol:
Don't forget, for you next appointment, when you call for the ride to the hospital, tell them that you MUST have a vehicle with air conditioning and, preferably, tinted windows due to your extreme sensitivity to the sun and to heat.
I am glad that you were able to feel better. Hopefully, your doctor's nurse will be a bit more diligent in her duties. Do complain about her failure to do so when you do get to see your doctor. Also, explain to him how you suffered due to her lack of due diligence!
Hope you are continuing to feel better!

Peace and Blessings
Saysusie

georgie
11-28-2008, 01:59 PM
thankyou everyone for ya replies ,I'm still not back to scratch but definatly improving .Over the years I have had nothing but troubles with specialests since I was first diagnosed a year ago , I had symptoms for 3 years but my ana test came back negative so the docs just said your fine ,it was only once my skin started to go tight that they redid the test and it came back positive etc etc since I first got sick 4 years ago I have had the misfortune of having to see many specialests and I have to tell you I am not impressed they are rude arrogent cold people and I have had enough of them , I told friends and family this last appointment was the last chance , if I got mucked around this time I was going to drop off the medical merrygoround , and that so called appoinment was the last straw , from now on I am going it alone , I am not doing the whole medical routine any more , my life is a very happy and contented one it seems that the only stress in it is when I am exposed to the medical fraternity , so I am going to just get on with life and enjoy it day by day ,just making that decision feels like a load lifted off my shoulders ,I feel so free and content has re entered my life , I know a lot of people revere doctors but my experience is the opposite I have yet to meet one that does not have a personality disorder of some sort they are just such horrible people ,well I've had my dummy spit and feel better for it ,but that doesnt mean I have had a change of heart I am so so not going near the medical merry go round again ...... hugs georgie