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Posted 3/8/2011 1:42 AM (GMT 0)
My best friend call this problem stress related and that is all and psycho-somatic.
Posted 3/8/2011 3:16 AM (GMT 0)
There are elements of stress that make almost every illness worse. However, if this is how your "best friend" attempts to support you during a lupus diagnosis might I suggest looking elsewhere for support?

Have you given this friend information like this: The Spoon Theory?

I hope you find better support here,
Posted 3/8/2011 3:46 AM (GMT 0)
It was difficult to accept Fibro. and I really have not come to terms with accepting Lupus.

Maybe my friend can't accept my diagnosis like I have a hard time some days too. Acceptance is difficult.

Post Edited (Littlesrebel) : 3/10/2011 9:31:43 PM (GMT-7)

Posted 3/8/2011 4:01 AM (GMT 0)
I FWD The Spoon Theory to my friend. Thanks. I also kept it for myself.

Except the sickness shows on me. I dropped weight from this illness 120 to 90 lbs. The jaundice on my face I hide with concealer. Sometimes I can't take my rings off my fingers and sometimes they are too lose and don't fit.

Thanks for the support here over the yrs.
Posted 3/8/2011 4:09 AM (GMT 0)
LOL. People with lupus and fibro are not "normal people" anymore, they say a lot of both diseases is because our bodies are not physically reacting to stress calmly anymore. There is an actual physical change in the amount of natural cortisol created by our pituitary glands.

It is entirely possible that a good portion of our sickness is stress-related. Once I concentrated on 3 simple things, life started feeling a bit better.

1) get plenty of restful sleep. no interruptions, no lights, no music - deep recuperative sleep. if you don't wake up feeling rested, you might need help sleeping.
2) eat healthy foods at regular times. sounds too simple to be true, but helps a great deal. if the body doesn't know that it will get good stuff at regular intervals it doesn't know how to act.
3) keep stress down - for me, at first it was do something every 3-4 days. later it became do one thing every day. it still isn't good if I try to schedule 2 things a day. grocery shopping one day, lunch with a friend a different day

Those days of owning/running a full-time software engineering business with 6 employees, AND working on my PHD (computer engineering) full-time, AND running marathons is now over. And still I managed to get food & laundry done, which I now struggle to keep up with. Life changes.
Posted 3/9/2011 6:26 AM (GMT 0)

Lynnwood said...
There are elements of stress that make almost every illness worse. However, if this is how your "best friend" attempts to support you during a lupus diagnosis might I suggest looking elsewhere for support?

Have you given this friend information like this: The Spoon Theory?

I hope you find better support here,

A lot of people don't understand illnesses like Lupus and other autoimmune diseases. The symptoms that come with them can be downright strange and alarming. Many people tend to rationalize the symptoms as anxiety, and brush it off as just hypochondria, instead of a possible serious underlying disease. This makes it difficult to confide in others who cannot accept your cry for help. I was diagnosed with fibromyalgia, sarcoidosis/ neurosarcoidosis and akylosing spondilitis and my family still has a hard time accepting the news my doctor gave me. My mom seems to pretend she doesn't hear me when I talk about it, but only pays attention to the infection I have because of my diseases.

It might take a while for Littlesrebel's friend to humbly accept that she/he has an inflammatory disease. Otherwise, it's time to push on to new sources of support. Maybe confide in your family, other friends or seek a counselor or psychologist. There's plenty of online health communities and groups you can meet up with in your community. We're here for your support as well. Everyone deserves to be cared for during time of illness. Keep getting answers from your doctor and read up what you can about your symptoms. Fibromyalgia is sometimes diagnosed in patients before it's found that they really have something more serious in the Rheumy department.

Good luck to you Littlesrebel.
Posted 3/9/2011 3:52 PM (GMT 0)
Yesterday I was thinking that if I just take the plaquinel with the asprin this will all go away and I won't have to deal with it again. Plus take some super anti-oxitant fruits from around the world that cost a lot of money to order; well that will put the Fibro and Lupus in it's place. LOL. [img]/community/emoticons/eyes.gif[/img] I'm just trying to stay healthy that's all and like my Dr. told me yesterday not to give up.

People like my friend I need to eliminate, b/c they don't hold any water of moral support right now. Normal people tell me just go out and have fun. Normal people also tell me to eat all natural foods and I will be cured. WOW. That's the secret. The Dr's. don't even know that. I should alert the press and the Dr's about that. Just Kidding.

Anyway. Normal people out there think they know all about this Lupus, but I don't think they have seen a Lupus patient in the hospital before. Hoping for that remission. Thanks to everyone on the board that is listening to me and others.

Post Edited (Littlesrebel) : 3/10/2011 9:42:19 PM (GMT-7)

Posted 3/9/2011 8:50 PM (GMT 0)
I try to understand, but the girl I knew online who had this specifically told me "not to google" the illness. Well, I broke that, and here I am now.. Her symptoms were inherently confusing though.
Posted 3/10/2011 1:41 AM (GMT 0)
I was discharged from the hospital today. I went in on Sunday because I was unable to speak or move after I woke up. This lasted for approx. 6hrs straight before I could even slur out one word. I was afraid that I had another stroke. I was admitted for observation. The neurologist came in and told me there was no physical findings that would have caused this to happen to me. She said that it was conversional disorder r/t stress and anxiety. Not sure that i agree. Once she found out that I had lupus she said it was the cause and sometimes you dont have to be stressed for this to happened. I had another episode while i was in there. Not sure of what is happening to me. They gave me IV steriods and I starting feeling better. The Internist told me that I had inflammation of the brain. So who do you believe. I asked to be discharged feeling that I was bringing this on myself. Am i really seeking attention. I had no control over what happened to me. I tried to fight what I felt coming on but it was over powering. I couldn't anything but my head. I tried to open my mouth to speak but it felt like it was waited shut. Mystery.
Posted 3/11/2011 4:29 AM (GMT 0)
I've been a medical mystery until recently. Now I fear it's too late. I'm very ill, but finally diagnosed.

Since the age of 14 my T-cells have been running low. At that age I was first tested for HIV and Mono. I had never had intercourse or been out of the Country. Ever since then I had been getting very ill with no explanation's.

A couple month's ago I looked up Lupus symptoms and tests. I copied the test and sent them to the Dr. to run the test on me. Pos. test results. Then the test was run again to make sure and the results were pos. test results for Lupus. I'm the one who found the tests panel to run.

I told the Dr. I was in a Win and Lose situation all this time. She told me not to give up.

My point is that this disease is not imagined, but very real.
Posted 3/11/2011 8:57 PM (GMT 0)
Yes, it's real alright. I don't understand the situation where someone is complaining and obviously hurting but others judge the condition as if it was psychosomatic. However, I can't really get a grasp of these autoimmune disorders either, or why several seemingly different conditions seem to hit the same people. I'm diabetic myself. For now I've been spared from major complications or other illnesses, but it's possible. The girl I knew, was very ill too, but now I haven't heard any update from her for a long time and am very worried. Maybe it's already too late..
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