Filling in the blanks..was...Re:My Pain In Shame

[Guest guest]

Shelia,Thank you for taking the time to offer the additional information. I know how tiring it can be to write, unless we feel that compelling need to do so. You have shared much and I am grateful for the insights.

While I have known one or two who suffered from the effects of lupus, I

was not entirely sure of much of it, so took some time to do a "crash

course". While I may not have to use the words and and terminology in talking to you, I thought I would include some of what I found, so that others may have it at hand. That information follows at the end of this letter.A few questions do rise to mind. One of those being, I am assuming you are talking of the "systemic" type lupus? And I am puzzled by some things on the chart below, such as, since it seems the entire family has this, and it is indicated that less than a 10% chance exist for that to happen, and is only raised by a "3 times likely to occur" in some races. That being said...while it is possible to be "predisposed" to a genetic link, it seems rare. [according to the information.]Could it be this is the "drug induced type", of prescription drugs [see listed below] that may have been used by the entire family at some point? This, causing the same symptoms as the "systemic version"? Or some kind of "exposure" in the environment? In other words...does the neighborhood where you all were for a period of time reveal anything that could be questionable? An example of this is , my wife, grew up in a neighborhood, not far down the road, what was old cotton fields...and both of her parents died of various type cancers in a short period of time, and as I looked at it, and I tend to look at weird things...is that virtually the entire neighborhood...of the people who lived around there at the time, ended up dying of the same things.And in the neighborhood right near us...it seems uncanny that just about everyone there, those who have been there for a while, all have some form of MS...and related ailments.So it makes me wonder about it being the whole family.That's not to go one way or the other on it. But the next question relates to Canada. I'm under the impression that the health care there is, not only free, but pretty good stuff...even sending staff to the home. But then, what do I know, I'm not there...and you would certainly have better information than I would at this point. Is there a board or something where a medical emergency could be declared, and a rush put on, for all of the family? Even here in the U.S., it might not be as quickly as could be, due to insurance, coverage, and ability to pay.I'm sure I'm not covering anything you haven't already looked at and considered. But, I suppose I'm "grabbing" for possibilities, by stating what might already be obvious, and already considered.I am already sending love into the entire thing. To you, to your family members, to the medical issues surrounding it. Into the very bodies...surrounding and submerging all of it. And I will sit for awhile in a few, and that will be my focus. You may even feel this in some way...in a way that will be comfortable to you. Be it warmth, or a gentle light...maybe as "that loving embrace". But it is already there now. It is filling your family and home.It sounds like to me that your "husband" is just as strong as he needs to be. This was planned out long ago...before the two of you even met. Don't you see dear, he IS your strength. He is what's been "sustaining" you [aside from the obvious embrace of God]. This is why the NDE's. I'd say that in his own upbringing, in his religion, in his understanding, NDE's, projection, phasing, past lives, all go hand in hand...does it not? And where would you have understood this better than through him, since your studies had been more mainstream? He is here FOR YOU. You called out, and he showed up. Hummm...wonder why that is? Prayers don't get stuck at the border. And neither will he.I'm not sure what exactly, but, because it's something that someone in charge of these things just can't get out of their mind...a decision is going to be reversed...and your husband is going to be with you, much sooner than you realize. I know this sounds crazy...call me nuts...but it came to my mind and it won't leave. Just trust that things are already happening, even in this very moment.And it's not about him coming to help you, and the family, and you needing to feel guilty about it. Your not going anywhere for awhile yet. And neither is the family. And you thought we were just gonna nod our heads and say a few "Hail 's" and be on our way......Wrong! Sorry...we here are going to flip you on the ear...pull your nose, tell you jokes, make weird faces, jump up and down, keep you awake, and otherwise make complete fools of ourselves till you say "enough of this", get up and run out of your front door...running down the street yelling "help, help...these nuts are insane". And then we are all gonna sit there on the front porch till you come back....and we'll, do it again. That's what brothers and sisters do. That's what we do. So, you might as well get ready to head to the park....and we'll race you there.There are prayers and all kinds of loving energy pouring in as this is written. can you feel "that". That breeze just caught you off guard didn't it? ...was that a breeze? We'll let you decide.With Love,D~

Lupus Fact Sheet - From the Lupus Foundation of America

What is lupus?

What are the symptoms of lupus?

What are the different forms of lupus?

Who gets lupus?

What causes lupus?

How is lupus diagnosed?

How is lupus treated?

What is lupus?

Lupus

is a widespread and chronic (lifelong) autoimmune disease that, for

unknown reasons, causes the immune system to attack the body's own

tissue and organs, including the joints, kidneys, heart, lungs, brain,

blood, or skin.

The immune system normally protects the body against viruses, bacteria,

and other foreign materials. In an autoimmune disease like lupus, the

immune system loses its ability to tell the difference between foreign

substances and its own cells and tissue. The immune system then makes

antibodies directed against "self."

What are the symptoms of lupus?

Symptoms of lupus often mimic other less serious illnesses.

Symptoms can range from mild to life-threatening.

Lupus can go into periods where symptoms are not present, called remission.

Although lupus can affect any part of the body, most people experience symptoms in only a few organs.

The following lists the most common symptoms of lupus and the percentage of lupus patients who experience them.

Symptoms Percentage of Cases

Achy joints (arthralgia)

95%

Frequent fevers of more than 100 degrees F.

90%

Arthritis (swollen joints)

90%

Prolonged or extreme fatigue

81%

Skin rashes

74%

Anemia

71%

Kidney involvement

50%

Pain in the chest on deep breathing (pleurisy)

45%

Butterfly-shaped rash across the cheek and nose

42%

Sun or light sensitivity (photosensitivity)

30%

Hair loss

27%

Abnormal blood clotting problems

20%

Raynaud's phenomenon (fingers turning white and/or blue in the cold)

17%

Seizures

15%

Mouth or nose ulcers

12%

<Back to the Top

What are the different forms of lupus?

There are several forms of lupus: discoid, systemic, drug-induced, and overlap syndrome or mixed connective tissue disease.

Discoid (cutaneous) lupus is always limited to the skin and is

identified by a rash that may appear on the face, neck and scalp.

Discoid lupus accounts for approximately 10% of all cases.

Systemic

lupus is usually more severe than discoid lupus, and can affect the

skin, joints, and almost any organ or system of the body, including the

lungs, kidneys, heart or brain. Approximately 70% of lupus cases are

systemic. In about half of these cases, a major organ will be affected.

Drug-induced lupus occurs after the use of certain prescribed drugs.

The symptoms of drug-induced lupus are similar to systemic lupus. The

drugs most commonly connected with drug-induced lupus are hydralazine

(used to treat high blood pressure or hypertension) and procainamide

(used to treat irregular heart rhythms). The percentage of individuals

using these drugs who develop drug-induced lupus is extremely small,

and the symptoms usually fade when the medications are discontinued.

Drug-induced lupus

In approximately 10% of all lupus cases, individuals will have symptoms

and signs of more than one connective tissue disease, including lupus.

A physician may use the term "overlap syndrome" or "mixed connective

tissue disease" to describe the illness.

<Back to the Top

Who gets lupus?

It is difficult to determine an exact number of lupus cases, and estimates vary widely.

Based on the results of several nationwide telephone surveys, the Lupus

Foundation of America estimates that approximately 1,400,000 Americans

have a form of the disease.

Despite the fact that lupus can affect men and women of all ages, lupus

occurs 10 to 15 times more frequently among adult females than adult

males.

Lupus develops most often between ages 15 and 44.

Lupus is two to three times more common among African Americans, Hispanics, Asians, and Native Americans.

Only 10 percent of people with lupus will have a close relative (parent

or sibling) who already has lupus or may develop lupus.

Only about 5 percent of the children born to individuals with lupus will develop the illness.

<Back to the Top

What causes lupus?

Lupus is NOT infectious, rare, or cancerous.

Researchers do not know what causes lupus.

While scientists believe there is a genetic predisposition to the

disease, it is known that environmental factors also play a role in

triggering the disease.

Some of the factors that may trigger lupus include infections,

antibiotics, ultraviolet light, extreme stress, certain drugs, and

hormones.

Hormonal factors may explain why lupus occurs more frequently in females than in males.

How is lupus diagnosed?

Because

many lupus symptoms mimic other illnesses, are sometimes vague, and may

come and go, lupus can be difficult to diagnose.

Diagnosis is usually made by a careful review of:

a person's entire medical history, physical examination, coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

Currently,

there is no single laboratory test that can determine whether a person

has lupus or not. It may take months or even years for doctors to piece

together evolving symptoms and accurately diagnose lupus.

<Back to the Top

How is lupus treated?

For the vast majority of people with lupus, effective treatment can

minimize symptoms, reduce inflammation, and maintain normal bodily

functions.

Treatment approaches are based on the specific needs and symptoms of each person.

Because the characteristics and course of lupus may vary significantly

among individuals, it is important to emphasize that a thorough medical

evaluation and ongoing medical supervision are essential to ensure

proper diagnosis and treatment.

Medications are often prescribed for people with lupus, depending on

which organs are involved, and the severity of involvement.

Commonly prescribed medications include

nonsteroidal anti-inflammatory drugs (NSAIDs),

acetaminophen,

corticosteroids,

antimalarials, and

immunomodulating drugs.

Increased

professional awareness and improved diagnostic techniques and

evaluation methods are contributing to the early diagnosis and

treatment of lupus. With current methods of therapy 80-90% of people

with lupus can look forward to a normal lifespan.

<Back to the Top

© 2001 Lupus Foundation of America, Inc.

Thank

you to the Lupus Foundation of America for the use of this material.

This was written by them for them. We wanted you to have the

information as many people have asked me about MY own life as a woman

living with Systemic Lupus. For more visit them at: www.lupus.org

For Educational Materials or to make a donation to a much needed cause:

Lupus Foundation of America, Inc.

1300 Piccard Drive, Suite 200

Rockville, MD 20850-4303

Phone (301)670-9292

source: http://www.coolnurse.com/lupus.htm--- In , "Sheila" <penlady5@...> wrote:>> Hey ; > I am glad you jumped in. So nice to meet you. Thanks for > pointing out that I haven't supplied you with enough information to > put the puzzle pieces together. Let me fill that in for you.> I live in Canada, and married a man from Swat in the Himalayan > mountains. Its also where both 'Lost Horizon" movies were shot, and > is the 'Shangri-La' the Asians speak of. We have been running a > business online for 2 years of translating and proofreading to earn > money for immigration. I have been with him for 4-8 hours a day on > webcam for 4+ years and I know about 10 other people in his town > that all know and respect him. I met him through one of these other > friends online. > I am in the end stages of lupus, with heart failure and a few > weeks ago was told that if I didn't get some treatment soon, I would > be too sick for any kind of treatment. The Dr. told me I might have > to wait 6-12 months for testing and treatment. I lived in the USA > for 20 years, and there I would be treated within 24 hours. There > have been an eerie amount of delays with the immigration, but those > seem inspired, because I cannot take care of him and help him adapt > to this society when I can't even get myself a sandwich. I can't > even keep him fed unless I get well, and since the medical world > gave up on my lupus years ago, all my treatments except for > unbearable pain, are natural. I am also going through Rapid Eye > Technique sessions and energetic healing sessions that I can re-send > the websites to if you're interested, but are in an earlier post. I > decided to pursue this course of "The secret", energetic healing, > changing the way you think and speak, etc. in hopes that I can > start a whole new life. > I have a master's degree in world religions, but my education > completely passed over this new enlightened way of thinking, maybe > because it can't be classified as a religion. I am Christian, but > also have beliefs from every major religion and still enjoy studying > them. I have had more than 12 NDEs (Near death experiences), so I am > not afraid of dying. In fact, until I started the Rapid Eye > Technique, I wanted to die. RET removed that desire and changed it > into a desire to start all over and to give to people as much as I > possibly can, and to enjoy some things in life. I am bedridden so > even going to the park would be enjoying life, I moved to Canada 9 > years ago this week but have been too sick to go meet friends. I did > meet a few, but was not able to share in the give and take that > friendships need to survive, so the friendships didn't survive. I am > living with my terminally ill mother (also lupus) and my terminally > ill father (just went into a nursing home in March but we cared for > him before that) and my terminally ill brother (who moved close to > the nursing home so he could feed dad twice a day). We don't know > who will go first. I wish we could all go at once. We are so close, > it will be really hard to miss even one of the others...but knowing > we will soon all be together is a comfort. > It is possible that this threat of me dying is just like all the > others, where the Dr. would say "You can't live past 2 more years", > then in 2 years I would have a NDE, get sent back to earth, and it > would start again, but this time the feeling is completely > different. I have enough organ= damage now that death is possible. > Death itself is easy. Its living alone through this pain and fear > and starving that is bugging me. Mom is not well enough to help me. > She is living on ensure drinks since I can't cook for us anymore. > Just after being told my prognosis, I made it a full time job to > find an agency to help my family. I went through them all, no luck. > I have had ads up to hire someone for years with no reply. There is > a real labor shortage crisis in Canada so they are begging for > immigrants to come work here. My husband couldn't bear to see me > suffer so much, and loves me so much, he wanted to come here and > help my family, but that's not happening either. I guess that's good > because it would be awful for him to come here and live with a sick > wife, not able to enjoy life or get help to adapt, and then if I > died, he's be left in strange country alone. It would be much > better if he could come after I could get this heart treatment so I > would have a little bit of strength to help him. I feel so bad that > I can't be the kind of wife I want to be, the kind he deserves, but > I "SERVED" hubby #1 so much that I wore out my body before I was 35, > then when I started slowing down, he tossed me out like a used > Kleenex. He ten married an oriental woman, thinking that was the > only way he would get "served" like I served him, but that backfired > on him. I am thankful that God got me out of that marriage, because > even though I thought I knew what love really was, it was completely > different compared to the love I get now, even from 10,000 miles > away. If there is such a thing as a twin flame or mirror spirit or > soul mate, this man makes me believe there are such things. We are > so much in tune with each other, even calling at the same time, > saying the same things, knowing what the other is feeling. I want > this man despite breaking all the rules of his society and he feels > the same. Rules of marrying outside the tribe, color, religion,age > group, away from the family, everything. We are both willing to give > up everything to be together. It sounds foolish, and I do fight with > my practical side and my desire to be with him, because I know how > hard marriage is at the best of times, he doesn't. He's an innocent.> Even with the heart condition taken care of, if that would take > me back to where I was 4 months ago before the hart problem, then I > will only have 4 hours a day of strength, but I still HOPE I can > find ways to change that. If I can't, then I feel very sorry for the > life my husband will face with a sick, but adoring wife.> I am ashamed to complain, because I know things could be > worse...but sometimes it really needs to be vocalized that I am > struggling and alone and need encouragement, and soon will need a > real human local friend or employee to help with living skills. Mom > is sick upstairs in her room, I am sick downstairs in my room, and > rarely are e able to do much for each other. I am SOOO thankful to > be alive in the age of internet so I can reach people even from my > bed. People from all over the world. I am a knowledge sponge, so I > am learning more from bed than I could if I traveled the world if I > were healthy, so this little box is a blessing. lol.> thanks for everything you said. It really did help me a > lot. This really is an amazing bunch of people~!> Much love and gratitude,> Sheila> > ; AND > ALL....> > > As I read your story, it feels like my insides are being> > pulled out, because I am feeling the same in 1 way, but had > completely> > different experiences than you. This new way of thinking tells me > that> > everything I am suffering is my own fault and it seems to add more> > pain and guilt and shame instead of helping it. This new way of> > thinking (well its all new to me) tells me that if I were to just> > think differently, there would be no more suffering. I am still> > rebelling against that. That leaves no room for God helping us walk> > through certain circumstances because He knows we need to learn > from> > them. It leaves no room for others needing to help those who need> > help, because "they caused it, they are supposed to work out of it> > themselves", and I have been told that, but have never been taught > > how to think differently. Just today I was going to send a note to > the> > group, saying how much pain I was in and that I did just want to > die> > today, and that my enthusiasm to stay alive,> > > which started just a few weeks ago, had burned out because I > don't> > even have much strength to breathe or to process any > thinking....but> > didn't think I should post it here, because I would get blamed for> > "thinking WRONGLY", and that everything I am feeling, I brought on> > myself...and that information does NOT help me get out of the pain.> > Does this new way of thinking leave any room for God comforting me > or> > there even being a God who loves me? I'm at the point where I am> > trying to decide whether to accept/believe all of this, or to go > back> > to what I knew before, where I DID feel comfort from my God. I am > in> > pain, and I too was too ashamed to say anything here. I have not > even> > had the strength to read all the posts, so have considered kicking> > myself out of the group, because I am in grade 1 with this new way > of> > thinking, and all of you seem to be in University, and I don't even> > understand half of what is said, until I learn other concepts > first. I> > don't know what to think or> > > feel or think...I just know I am in terrible pain and afraid > that I> > might have to annul my marriage because I am too sick to help him> > survive and adjust once he immigrates. He is from Swat, by Kashmir > in> > the Himalayan mountains, also where Shangri-la is believed to be,> > where Buddha was born. He had to travel to Pakistan for > immigration,> > and they said that according to PAKISTANI LAW, there was something> > left out on our marriage certificate. We got a lawyer from Swat, > who> > said that since we were not married in a Pakistani owned area,> > Pakistani law does not matter. The Afghanistan people have to go to> > Pakistan for immigration too. So then we were told it would take > from> > 1 to 4 years to even get a hearing to tell the judge about the> > mistake, but I am happy for the delay, so I can try to get well > first.> > I am just thinking what if I don't get well? Why delay his life? I> > need to let him move on and marry someone else...but he doesn't > want> > to. Ok enough babbling, thanks for> > > writing that. I really was ashamed to cry out for help in here > too.> > > Blessings, > > > Sheila> > > > > > > > > > > > > > > > > > ---------------------------------> > > Boardwalk for $500? In 2007? Ha! > > > Play Monopoly Here and Now (it's updated for today's economy) at> > Games.> > >> >>

[Guest guest]

Thanks so much .

I am trying to gather strength to call all local big wigs in the medical system to get tests and treatment faster. I have even imagined taking part in the huge new industry of medical tourism, where people go to other countries for health care but I don't have my passport yet or money or the strength to travel. When I do get more strength, my hubby and I have been doing lots of talking about taking a honeymoon together before he gets his visa, meeting in a third country for a vacation. That too will take money and strength and a visitors visa to wherever we plan to go, because now Pakistanis need even visitors visas for almost every country on earth. In a few hours I will find out if he got a Polish visa, that would allow him to travel to other European countries as well.

Canada's health care system is 25th in the world and USA is 33rd. Italy and France and Andorra are the first 3. That's one question brought up that I forgot to answer. here is the website that tells which country is which quality in medical care.

http://www.photius.com/rankings/healthranks.html

Nice to meet you too ! Thanks for your kindness and thoughts.

Sheila

Posted by: "" ASundayInJune@... asundayinjune

Sun Sep 2, 2007 3:50 pm (PST)

Hi Sheila,I haven't written to you yet - but after reading this letter, my mindand heart are racing so! I am , 's wife, and fairly newhere in this group. Gosh, but you are such a strong woman! Though bedridden, you arereaching out for answers, for help. Wanting so badly to be with theman you love more than life itself. You are surely a source ofinspiration for me. I feel VERY strongly in my heart that there is a solution to gettingyour husband here AND healing for you! I know that is thinking,thinking, thinking...there must be a way for them to be together. Wewere talking about it a few minutes ago. My thoughts and prayers arewith you!I have been surprised at how much of an impact this group and all itswonderful members have made in my life. I stay super busy at work - Iam a Human Resource Manager for a charter/tour company - but sincejoining this group, several times a day people from the group just popinto my mind. At that moment I stop and say a silent prayer and justsit and think about them for a few minutes. Sometimes there may besomeone that day that I just can't get off my mind...and I am alwaysrelieved to get home after work and check my mail and see that theyare ok.I am so glad to have met you.Much love to you,