Re: Pam, new member whose brother is in hospital...

[Guest guest]

Pam, Welcome. We have three mail members at the moment, although one lives in India and is not

active at this time with the group. Two men live here in the States, and post to the group fairly often. The one most active right now, is . If you address a post to his name in the subject line,

I'm sure he will reply within a few days. And, in terms of Lupus appearing differently in men as

opposed to women, honey...Lupus appears differently in EVERY patient. Some of us share similar

symptoms, some of us don't. Some of us are labelled Lupus SUSPECT because our tests are not

positive enough, some are labelled non-specific autoimmune disease, and some get lucky and get a

dx right away. I waited almost thirty years for the word "suspect" to be removed from my chart.

Your mother is more than welcome here, as are you and any family members who wish to learn about

Lupus, and it's effects on patients, family, and friends. We have many informational articles on

those very subjects. One of our favorite mottoes is: Knowledge is Power. We offer up to the minute information on diagnosis, testing, interpreting test results, treatments, and shared experience

that can really help patients and families, alike, understand and cope with this disease.

We also have learned to laugh in the face of adversity. We can joke around about some pretty

scary aspects of this disease, but our information is always as accurate as we can make it. We truly

understand and care about our members and their families. We know how frightening and frustrating

this disease can be, how difficult it is to get good care, and we have learned how to be assertive in

directing our own cases.

What kind of infection is your brother fighting? I was misdiagnosed with a case of severe flu, about

7 years ago. After two weeks of fighting with a substitute doctor (Mine was out of town, of course.),

I ended up in an ambulance careening through town on my way to the ER with a fever of 105. I

was incoherent part of the time, in a great deal of pain, and had no idea what was happening to me.

Turned out, I had sepsis from a silent UTI (A bladder infection without obvious symptoms had spread

to my left kidney, where it developed a large abcess.), and nearly died. Took three week long stays

in hospital, constant IV antibiotics of different types (Being Lupus patients, many of us are suddenly

allergic to medications without warning, and I went through several antibiotics before they found one

I could tolerate.) for a total of 22 days in and out of hospital, then seven weeks of IV antibiotics at

home to get well. It took me a full year to regain my strength, which as you may know, with Lupus

is never very high, anyway. So, I know what your brother is going through.

The best advice I can give you and your family is to pay attention to your brother's care, very closely

and make sure he is getting the right medications. If he is on a ventilator, it may be that his lungs

are what's involved, here, so do they have a pulmonary specialist working on him, too? There should

be a social worker in the hospital who can help you take charge of his case as much as possible, and

who can advise you on how to get the right services for him, too.

Please keep us posted, and by all means, tell your mother we are here for you all. Hugs, MM aka:

Mike, one of the moderators

[Guest guest]

You really hit the nail on the head. we don't know which came first,

in my memory it seems like about the same time, which would be in

line with what you were just saying. there are lots of issues with

him not taking his meds. i believe he is getting his meds

administered to him now because he is barely conscious. its very

complicated with the bipolar and he is not a very nice person to deal

with, he was that way before bipolar or lupus.

Pam

> Pam, Was your brother bi-polar before the Lupus dx? I ask,

because

> sometimes neurological problems are part and parcel of Lupus, and

psychoses induced

> by Lupus are common, and can be

> treated in most cases. Also, even if he was bi-polar before the

Lupus dx,

> his medications for that

> should be updated on a regular basis. Times and bodies change,

and since I

> am the adoptive mother

> of four special needs kids, I have dealt with many brain disorders,

bi-polar

> among them.

>

> If his bi-polar problems are interfering with his ability to accept

medical

> treatment for his current

> infection, your mother may need to have a psychiatrist added to the

roster so

> his meds can be

> monitored and perhaps administered by injection while he is so

ill. Just a

> thought.

>

> Hugs, MM