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yxhewc
05-07-2006, 10:09 AM
Hi all,
I have a girlfriend who's suffering from SLE. She's got it when she's 10 and now she's 21.

I do not know what her doctor told her specifically because she doesn't wish to share it with me.

Recently, she has had a lot of headaches (I suspect the immune system is attacking her brain already), and she's been warded twice this week for fevers.

She's constantly in pain and because of her disease and partially her past experiences, she's very very depressed right now. VERY depressed and antisocial.

She's took up a secretarial course and became a secretary (a low stress job) but due to her excellence in work, she's recently promoted to the company secretary of a public corporation, adding a lot (i.e few hundred times extra) to her workload. The problem is she's very very dedicated to her job and doesn't want to leave it.

I read somewhere that the Chinese (my girlfriend's also chinese) are very advanced in their medication of SLE, and they have known about SLE since about 1000 years ago.

I tried to convince her to go for some Traditional Chinese Medicine or Acupuncture (or some other forms of alternative healings) but because she's a staunch protestant christian, she refused all those treatments.

Her doctor told her to be positive, and I, too keep telling her to be positive, but her positiveness is only on the outside. Deep inside her she lost all hope to her life. She is trying to push me away, push her friends away.

I don't want to see her like this. Please help!

I need some real life people who has fought SLE from the brink of death to inspire her..

Please. Please, someone help me to help her

Saysusie
05-07-2006, 02:56 PM
Hi Yxhewc: You are wonderful for caring so much for your friend. Having support from friends and family is very, very important. She is blessed to have you as a friend!
It sounds as if your friend is currently in a flare and her lupus is active. Almost all of us have suffered with the flare/remission syndrome of lupus. We have periods when the disease is very active and we are very sick and cannot believe that we are going to get better. Then, we take our medications, become actively involved in our care and try to strengthen our bodies by exercising and we are able to acheive some form of remission - or at least a period where disease activity is minimal.
This is part of nature of this disease!
Another common feature is depression. We have all felt the sadness and lonliness which accompanies the lost of our health and our lifestyle. The problem of depression is particularly relevant to us for several reasons. For one thing, depression can be a symptom of the lupus itself as can a host of other psychiatric problems, including anxiety, hallucinations (seeing or hearing things that are not really there), paranoia, and withdrawal. 60% of lupus patients have some form of psychiatric symptom of the disease, more than any other single class of symptoms except for the Lupus headaches. If the depression is in fact a direct result of lupus, it will usually respond to treatment of the lupus itself (e.g. with steroids).
More commonly, however, depression occurs in lupus patients as a result of the changes in lifestyle that the illness forces on us. Depression is a natural reaction to loss which makes us vulnerable to depression for a variety of reasons: Chronic fatigue and joint pains make it impossible to perform up to the level we have come to expect of ourselves and that others expect of us. This loss of the ability to meet normal standards of performance can be very depressing.This is further compounded by the fact that the we can function without any difficulty whatsoever in periods of remission, and we often have no outward sign of our illness. To the onlooker, then, nothing appears to be wrong with us and we are told, too often, that we don't look sick!
As a result, our employers, our spouse, our friends and our children do not fully understand why we are not performing at the level that we once did. They have no experience in their lives with which to compare it. Their inability to understand can lead to our feelings of shame, isolation, worthlessness, and, of course, depression, as if the illness and the limitations it causes were somehow our fault.

Another aspect of lupus that can lead to depression is the long-term uncertainty about our future. Most people take for granted that they can plan a weekend away or a night out with friends without worrying about whether they'll feel up to it when the time comes. Not so the lupus patient.
Our major life decisions are hinged upon the fact that we may not have the strength or the ability to participate. So, now we have to think about the uncertainty in career moves, wedding plans, plans for getting pregnant, and ultimately concerns about our life span and about our own death. All of these cause a loss - the loss of the trust and faith we once had in the future. This loss too is difficult for others to comprehend and it is too hard for us to explain or to have to take in. So, it leaves the door open to depression. It is quite a burden to try to deal with alone. That is why I always suggest that lupus patients get treatment for their mental health as well as their physical health..the two are intertwined and one cannot flourish if the other is in trouble.
Unfortunately, we live in a society that tends to stigmatize psychiatric and psychological treatment as if it were somehow a sign of weakness on the part of the patient. People are made to feel ashamed for having difficulty coping and needing the help of a psychiatrist or psychologist. Lupus patients in particular must be aware that depression is a common and natural result of attempting to deal with a chronic, unpredictable illness. There is much potential benefit to the lupus patient in acknowledging this and seeking treatment when necessary. Friends and family are also often lacking up-to-date knowledge about the role of depression in chronic illness and require education by the patient.
Perhaps the best overall strategy for avoiding depression in lupus is to be able to accept the ups and downs imposed on us by the illness. This may mean at times that we have to curb our own expectations, take it easy and reward ourselves for accomplishments that may seem "small" to others, but are nonetheless significant to us. And if depression does develop - in particular Major Depression, it is ok to seek professional help as soon as possible.
What is important for you and your friend to remember is that most people with SLE live normal lives, but we make sure that our disorder is carefully monitored and that our treatment is adjusted as necessary to prevent serious complications.

Here is some information to help you understand your friends disease and her headaches:
Lupus Overview
Lupus (systemic lupus erythematosus, or SLE) is a chronic disease that can cause inflammation, pain, and tissue damage throughout the body(systemic). Lupus is an autoimmune disease, in which a person's immune system attacks its own tissues as though they were foreign substances. Lupus can be mild or serious involving the kidneys, heart, lungs, or blood cells.
While the treatment for SLE has improved and long-term survival has increased, it remains a chronic disease that can limit activities. Although severe sickness can occur, this usually results from the most serious forms of the disease. More often, the quality of life is compromised by symptoms like fatigue and joint pains. These things are not life threatening!
The best way for her to control lupus is to be very pro-active in her care, take all of her medications as prescribed, visit her physician regularly, and learn as much as she can about lupus, her medications, her treatments and her progress. Mostly, she should get involved in her care. Don't take a back seat.
The unpredictability of lupus and the occasional lack of response to treatment may cause some patients to be depressed, lose hope or the will to keep fighting, or other emotional distress such as irritability or anger. A good doctor-patient relationship and solid support from family and friends are key to learning to cope with this chronic and often unpredictable illness.
Maintaining an active lifestyle will usually help keep joints flexible and may prevent cardiovascular complications. This does not mean overdoing it; the best approach is to alternate light to moderate exercise with periods of rest or relaxation.
Patients with lupus should avoid excessive sun exposure because the ultraviolet rays in sunlight can cause a skin rash to flare, and may even trigger a more serious flare in the disease itself. Wearing protective clothing (long sleeves, a big-brimmed hat) and using sunscreen liberally when outdoors on a sunny day should protect against such complications.

Young women with lupus who wish to have a baby should carefully plan their pregnancies. With the guidance of their doctor, they should try to time their pregnancies for a period when the disease is least active. It is crucial to carefully monitor the pregnancy and avoid certain medications (such as cyclophosphamide, cyclosporine, and mycophenolate mofetil) that would harm the baby. Women whose disease is very active, or who are taking some of these harmful medications should use birth control.
The possibility that the use of estrogen may induce or worsen lupus has always been a concern for rheumatologists. Recent research has shown that estrogen can trigger some mild or moderate flares of lupus, but does not cause very severe exacerbation of symptoms. However, because estrogen can increase the risk of blood clots, it should be avoided in patients with lupus whose blood tests have revealed the presence of antiphospholipid antibodies.

Lupus Headaches
Headaches are common in SLE and are a significant source of patient disability. Headaches (Lupus Migraines) are usually the result of Lupus' affect on the nervous system. Many Lupus patients suffer from this involvement.
The nervous system requires an uninterrupted flow of blood to supply its tissues with oxygen and nutrients necessary for normal functioning. With Lupus, nerve tissue may be damaged when antibodies attack nerve cells or blood vessels. Nutrients and oxygen are delivered through blood vessels that feed the brain, spinal cord and nerves. If blood flow is slowed or interrupted, the cells of the nervous system are injured, unable to function normally, and symptoms develop. The symptoms that occur vary depending on the location and extent of the tissue injury.
People with lupus experience headaches which are unrelated to their lupus, i.e., sinus headache, tension headache and bone spurs from osteoarthritis.
Approximately 20 percent of patients with SLE experience severe headaches which are related to the disease and known as lupus headache. The lupus headache phenomenon is similar to a migraine and may be seen more often in people who also have Raynaud's phenomenon. Lupus headache is treated like tension headaches or migraine, although corticosteroids are occasionally useful.
I hope that this has been helpful to you. Again, you are a blessings for caring so much for your friend.
ALso, please let her know that we are here any time that she needs to ask a question, get understanding or support and that she is not alone!
Peace and Blessings
Saysusie

yxhewc
05-07-2006, 07:49 PM
Thankyou susie...

I've must have surfed like a hundred lupus site.... SURELY there is something I can do to help her!!

I don't want to see her suffer like this. She lost all hope on life... she refuses to recognize she's depressed, hence not going to see a psychiatrist.

She's warded today, and specifically told me not to go and see her. :(

There MUST be something I can do to help her. Tell me!

SoleSinger
05-08-2006, 01:25 AM
I think sometimes it depends on the person... But, I know there are sometimes when I just want to be alone to figure things out... I also know that in the past ten months since I have been diagnosed, I've put my friends through a whole lot of stuff... There was a whole month where I was just angry and got into HUGE fights with my friends over stupid stuff... Actually almost lost my best friend because it got to a point where he felt like nothing he was saying was helping... I felt like I was going crazy... And I have my own personal issues with psychologists, so I will never go see one again... But, I do recognize that they can help.... If you would like, I can ask my friend how he put up with me during that time and see if he has any advice for you???

makinthebestofit
05-08-2006, 03:43 AM
Hello,

First, let me tell you that as hard as it can be, just knowing that you are a true caring friend will help her, but right now she is unable to see it.

I was dx in 2003 and have put my family and friends through hell. I can slide into depressions that nobody is able to touch, and any advice given is pushed aside. Eventually, I come out of it and am able to see the advice for what it is...acts of caring and love from people that want to help. 10 yrs is quite a while for a person to feel like they are "falling apart" and will play havoc on her mental state. Face it, you get very tired of being in constant pain. Pain and disability can also bring up a lot of anger that was really hard for me to get over-and some days I still haven't.

As far as Acupuncture, I am a Christian, but use acupuncture for some pain management. I don't see the conflict, and neither does my church. I look at it as a way to get some relief without adding more meds-I take enough of those as it is.

The best advice I can give is understand that when your friend shoots you down for trying to help, it is her pain and frustration talking and I am sure that inside, she is thanking God that you have not abandoned her-like I am sure many others have.

Keep being a friend to whatever extent she will let you, and know that when this flare is over, she will be able to talk.

Good Luck,

yxhewc
05-08-2006, 07:15 AM
Today I can't even get to her. She's refusing to see me, refusing to pick up my phone calls... and worst of all, she went to work.

SoleSinger
05-08-2006, 09:48 AM
Maybe, just let her have her space for a bit... But, make sure she knows that you will be there for her when she chooses to come back... And if she chooses not to... Make sure she knows that you will miss her, and will always care about her, but, will understand... Even if you really don't... Maybe not? Just a thought... I hope it gets better between you!!

yxhewc
05-08-2006, 09:55 AM
man.. I'm so fucked.

Why can't I do anything? There is something to be done, and I refuse to ignore that something. I am willing to fork out cash to send her to a psychologist. Hells, I'm even willing to fork out money to send her over to the US for treatment... but she just refuses and refuses and refuses!!!

SoleSinger
05-08-2006, 10:21 AM
Even if you dragged her to a psychologist, if she doesn't want help, it won't do her OR you any good... If patience and understanding is the most she'll let you give her right now... It may be the best you can do... It has to be hard... I can only imagine... I am so sorry that you both are going through all of this!

yxhewc
05-08-2006, 10:45 AM
it's not hard. I have good patience. I am willing to sacrifice just anything for her. I just need her to think positive!

I have failed to inspire her to think positive...

SoleSinger
05-08-2006, 11:48 AM
Omg... I have heard those words before... I'm going to ask my friend a few questions, and I will see if there is anything that I can do to help! Don't get discouraged!!

yxhewc
05-10-2006, 09:50 AM
well... any motivational stories?

SoleSinger
05-10-2006, 10:59 AM
I sent you a PM... ;)

yxhewc
05-10-2006, 11:12 AM
I'm lost... please... help me.

She's pushing me away. She lives for God and she believes God is telling her that her time is up.

She doesnt even want to accept that I am always here for her

Saysusie
05-10-2006, 07:18 PM
You say that she lives for God. Does she have a church home? If so, perhaps you can contact her minister,preacher, priest, rabbi (whomever her church leader may be). Advise them of your dilema and ask them to minister to her, especially now since she appears to be giving up.
Have you contacted her family and talked to them about her emotional state? It is important that they know what is going on with her right now so that they can help her also.
Is she a member of an HMO? Most HMO's offer psychiatric counseling as well as emergency counseling for just this type of issue. Contact them and ask for help!
Do not try to do this all alone, seek help wherever you can and do it now. Even if she is pushing you away, you can still intervene and try to get help for her and for yourself.
Let us know what any of the above options offer you
You are both in my prayers

Peace and Blessings
Saysusie

yxhewc
05-11-2006, 12:28 AM
what's a HMO?

I'm not in the United States... I'm in an asian country.. and frankly I don't think her pastor is helping much. Gives misguided views really

SoleSinger
05-11-2006, 01:26 AM
But shouldn't be telling her to give up on life! I don't know ANY religion that tells you to just give up on life!!!

Is he?

Could you talk to her pastor and tell him what is going on with her and see if he can help? Might be worth a shot... Or her family? Maybe you could all sit her down and have an intervention? Maybe if she sees that people care about her it will make her want to change her view... I can tell you that for me, one of the biggest things that spun me around...

Okay a little back story... After I was forcibly removed from my position in my band I stopped taking my medication... I said it was because I felt so much better before I was on it... But, it was really because singing is my life... It's the only thing I have ever had and ever did well... And now that was being taken from me as well because of this disease...

What turned me around was that my best friend almost gave up on me, and I almost lost his friendship... And why? Because he said he couldn't and wouldn't watch me kill myself... He cared so much about me, that he couldn't bear to watch me die because I was being stupid... And he's a pretty even tempered kinda guy... not much gets to him... And I care about him SO much... So when he was so upset, and so hurt because of something I was doing... I took a long hard look at myself and what I was doing and what was important to me... Because, it made me realize how important I was to someone else...

I don't know if that helps at all.... But, that was what worked for me... And I think I am getting to a point of acceptance... FINALLY...

Keep us posted...

yxhewc
05-11-2006, 01:31 AM
last night she said our relationship was over, and asked her to leave her alone. I've been doing that for the past week already..


EDIT: She refuses to see anyone else who is keen on talking about her disease. If you start mentioning it, she'll go all upset. So there is no point of intervention like this. Once she goes all upset, her mental defences comes on and rejects everything everyone says

EDIT AGAIN: I've told her she's the most important thing in the world to me, and yet she is still so... depressed. It's like she's afraid that someone cares for her.