Its Mother’s Day here in the USA. I’m a mother home very sick with a lupus complicated drug reaction. Since this is Lupus Awareness Month, I hope to blog something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really need to know more about the effects of this devastating disease:
Archive for the ‘random’ Category
True intimacy is achieved when you feel safe enough to be emotionally naked with your partner. You know your partner will not try to talk you out of your authentic feelings, will not say you’re “over-reacting”, will not try to fix it, and will not ignore you. You know you will be supported and validated no matter what you’re feeling and sharing, verbally or otherwise. You know you will receive empathy.This is love, pure and simple…
I was just watching a news story about a police officer who was killed by a “career criminal”.
Now there’s something for the perpetrator to be proud of. A murder to add to his resume.
Come with me to an interview with a career criminal composite. We’re having coffee at a Mac Donald’s in a really scary part of town.
“So what do you do for a living, Bob?”
“i’m a career criminal.”
“Could you tell us a bit about your job?”
“Yeah. I sell drugs. Steal and kill and stuff like that.”
“What kind of compensation can a good career criminal hope to make?”
“Well, the drugs are always good for a few hundred, even a grand some nights. Or you can always get some cash from someone walkin’ down the street. It depends on the victim. You have to be good at targeting your mark. If you’re lucky, you can make hundreds in just one night. If you screw up and the mark has no cash, there’s always the payoff of the thrill kill.”
“Yeah, you know, like, you kill the mark anyway because you’re pissed off and just want to at least get a rush from that. Cops are better though.”
“Cause they think they’re so above us, and are always sticking their noses into our business. I mean everyone has to make a living, right? I need a roof over my head and food on my table just like anyone else.
“Well…it must be dangerous?”
“Some. ” (He flexes his muscles a bit, clearly proud.) “But not if you’re tough, and you’re good. A lot of so called career criminals are just criminal wannabe’s. They’re amateurs. They don’t stay on the street, or anywhere else, very long.”
“Does your mother know what you do for a living?”
“Well, she knows I’ve done time but she also knows I was wrongfully convicted. I mean, otherwise why would they allow us conjugal visits?”
“Yeah, man it ain’t so bad at all. In our state, we have the right to get a trailer one weekend a month for our booty call.”
“Have you ever thought of going straight, getting a…real job?”
“Hey lady, you ever see where I grew up? Did ya think I was gonna be a banker, or a lawyer? I”m doin’ just what my daddy did..”
“You could go back to school…”
“And make what? Ten, fifteen bucks an hour when I get out? Who could live on that?” He looks at me like I”m a complete jackass and stomps out, like a bull ready to charge.
I walk fast, trying not to run, and get into my upscale car, locking all the doors. I feel scared, confused, angry, and also strangely sad for him. For the blankness in his eyes and the danger in his soul.
I zoom home to my cozy little house in the burbs, and thank God our sons were born into the life we’ve been able to offer them.
“Make new friends but keep the old. One is silver and the other is gold.”
I’m finding I don’t agree with that old saying. Some of my old friends have disappointed me terribly in regard to my health issues. No support at all. Not even polite questions about how I’m doing. If I mention I’ve been having a hard time, they respond as if I mention the weather has really been getting to me. Yet my blog friends are here for me all the time, express genuine concern, and check in with me to see if I’m OK when I’ve been quiet for a while.
So for me, new friends are the gold ones. Thank you, each and every one of you.
I would like to introduce the brand new blog of my friend Viv: Zen and the Art of Tightrope Walking.
She’s a wise and witty writer, a wicked poet, and a sincere and cool soul searcher. Check it out!
I really must break the best kept “secret” on the web. If you have any creative spark, juice, electricity – professional or just yearnings, please do check out Cafe Crem. This is an online, international cafe of the kindest, most wonderful people who encourage all efforts at all stages of artistic development.
The sense of generous, artistic community is truly a gift. It was created, and continues to be developed by Miki, an awesome artist, and Kev, her partner, an awesome musician and writer. Miki is French, Kevin is English, and they both live together in Spain.
There are different “rooms” in the cafe depending on your interest. There is the recently opened “Cafe Literati”( for the writers) the “Cafe L’Arte” (the Art Gallery) “Ca’ Puccini”(the Music Studio) and “The Mini Bar”( for teens and kids).
I love it there. Hope you will too.
If this can save ANYONE, ANYWHERE, I will be so happy….
Most people know the main signs of a stroke:
- Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
- Sudden confusion, trouble speaking or understanding
- Sudden trouble seeing in one or both eyes
- Sudden trouble walking, dizziness, loss of balance or coordination
- Sudden, severe headache with no known cause
But these are not so well known, and are routinely used in the emergency room. They were used with me when I stroked. I actually check myself with these when I am having fears of another one:
1. Ask the person to raise both arms
2. Smile and show their teeth
3. Ask them a question that requires a coherent sentence for an answer
4. Ask them to stick out their tongue (it should come straight out).
If ANY of these are even questionable, rush the person to the hospital. If they arrive within 3 hours of the onset of a stroke, there is a drug that can completely reverse its effects.
For more information go to the American Stroke Association.
OBAMA AND HIS MOTHER
There has been so much joy in this country to see a black man finally elected to the presidency. And I share that joy…I never thought I would see such progress in our society in my lifetime… all the talk about unity and one people in this country as represented by Obama. The only thing is, the fact that he’s half white is pretty much ignored, as I see it. Why???? Wouldn’t it be even MORE unifying to acknowledge the mix of BOTH races in our president elect???
I know from my studies that people of mixed race tend to identify with the minority half. I don’t know why. I just know its so. And I don’t get that. It seems like a disowning of half of who you are. Kind of a reverse racism of your own identity.
Talk to me somebody…Help me understand this….
How BEAUTIFUL is this?
“Imagination is more important than knowledge”….A. Einstein
P.S. I don’t know who is the artist of this awesome image. I found it in my huge selection of saved photos. If I downloaded something from your blog, please tell me and I will give proper credit. Thx.
Well it turns out that this image was downloaded from the site of one of my best buddies, AmberMoon, LOL! So anyway, if you want creativity or inspiration, you really should visit her site.
I’m taking one today. I mean, everyone else gets them. Why shouldn’t I? Even shrinks need mental health days once in a while. I need to relax and not HAVE to get in my car and go anywhere, be anywhere. No pressure…Mmmm…..
So lets see….I think I will dust today since I have an allergy to the stuff and its a real pain to walk around choking all the time….and do more Christmas shopping ONLINE (I don’t do malls anymore)..and finalize my choice of photos from the wedding for my “parent album”…oh…and i guess it would be a good idea to search again for my very expensive, lost wedding rings, I know they’re in this house someplace…and i need to get started on the jewelry I’m making for Christmas gifts….and call my mother which is never, ever less than a one hour conversation (that’s another whole post in itself)…and I have several, repeat SEVERAL baskets of ironing that I’ve been avoiding like the bubonic plague…and for that matter there’s probably at least the same amount of wash to be done…
Ok, so this is not what I’d advise a client to do on a mental health day. I would suggest to a client that she do something fun, relaxing, no chores allowed! But then again, for some people, getting chores done on a day when they would be going to work is good for their mental health because all that stuff is no longer waiting for them…hovering.…stalking them…
I guess I should call this my housework health day.
Tell us the truth. What do YOU do on your mental health days?
That title has nothing to do with my post. Its just a play on words of an old book called Even Cowgirls Get the Blues. I don’t know…that’s just where my brain went… Anyway, what I really wanted to mention as a P.S. to the Calling All Racial Minorities post about needing more money for lupus research is this:
I specified minorities because that’s the majority of people who get it. But not all. I, for one, am Italian American. My neighbor who has it is a platinum haired Norwegian American. Just want to say that all the rest of us need to be heard too.
What does “No New Lupus Drug in 50 Years” mean to you? Do you have lupus? Do you love someone with it? Did you love someone you lost to lupus? What can you do?
And WHY has there been such a shameful lack of research??? Interesting that the majority of victims are minority women…blacks, Asians, Hispanics…. I can’t help wondering how much faster they’d be moving if the majority of victims were white, upper class men… The YouTube I’ve inserted here talks all about the difficulties of research due to the complexity of the disease and the genetic variations of the patients. But still…you have to wonder…
The Lupus Foundation of America invites you to share your story with Congress. FIGHT for more money for research!
Share photos, personal stories, put faces and details on the stats they don’t even have.
God helps those who help themselves. LET’S ALL DO IT! LET’S FIGHT FOR OURSELVES! Go to the LFA website (link below) for details on how to make your voice be heard in Congress.
I know I will. C’mon guys. We are all we have. Lets stick together and do this together. Look what Rosa Parks, one woman, was able to accomplish with a single act.
From the LFA Website:
November 20, 2008 marked the 50th anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus. Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.
I am so ashamed to report that until I read VanessaLeigh‘s post today, I had no idea…
I lost three family members to AIDS. My Uncle Joe died in his 40’s. He was a handsome, brilliant professional actor and singer who never did make it to the big time. He never had the time. Also, in those days, he “passed”…but not enough… God what a guy magnet he was! I remember he visited my husband and I when we lived in Italy and we practically had to barricade the doors to protect him! Ok, I’m exaggerating a bit, but you get the idea. He was also one of the funniest people I’ve ever met, my mother’s dearest friend, wild, witty, best known for his role as one of the original four cabaret singers in Jacques Brel is Alive and Well and Living in Paris. When he died, they had a tribute to him that I will never forget at The Village Gate in Manhattan, where the show ran for years. I was so proud to be his niece. I was always a bit in awe of him and so I loved him from afar. Uncle Joe, I pray that you’re alive and well and living in Paradise with my father and yours.
Lenny and Joe, my own age and my cousins on the other side of the family, will be harder to write about, because I loved them more. They were my age and we grew up together. They started drugs at the age of twelve which ultimately led to them dying of AIDS, also in their 40’s. Lenny was the proverbial chick magnet. He was a swaggering, gorgeous, macho early Sly Stallone look alike. He was bitingly sarcastic (anyone who reads my blog knows I hate sarcasm) but I could read him…I knew him…I saw his facade…his emptiness and no clear sense of his own identity. The same emptiness drove his identical twin brother. Joe was the less aggressive one. A goofier sense of humor. A one girl kind of guy. Rough around the edges, both of them. Street smart but no interest in academics, ever. Their twinship, rather then feed a closeness, seemed to drain both of them of their psychological life’s blood. Almost as if there weren’t enough for both of them. God I miss them. My roots. We were the first three kids in a huge Italian extended family. We all lived together in a 3 family house until I was about 6. There was a built in pool which of course needed adult supervision in order for us to jump in. So we would start the garden hose and put drops of water on our foreheads in order to get someone to take pity on our overheated bodies. On Christmas Eve we listened in awe as reindeer and bells clattered across the roof of our house, courtesy of our ingenious uncles.
I started life with two older “brothers”, and now they’re both gone. There but for the grace of God went I.
Lenny and Joe, I will always, always miss you. I will always be grateful for the love and the roots and the FUN we had as kids, before the drugs and the plague took you. And I will ALWAYS associate the magic of Christmas with you, and remember the sound of those bells on the roof.
Most of all, I pray that, like my Uncle Joe, you’re in Paradise with my father and yours.
And so, my friends….who would you like to memorialize here?
Sniffle, sniffle, SNEEZE…..Sniffle, sniffle, SNEEZE 😦
We don’t live in the same cage, but somehow I managed to catch it…. Good thing I love ya, Amber.
Here are the facts of my recent consult. I would really like to know what you think or have experienced, positive or negative, in this area of medicine.
I wanted to try alternative medicine for my lupus since there doesn’t seem to be anything else to try except for chemo which I don’t want to do. I can still function and work and don’t want to live my life around that. I called this particular doctor of osteopathy because I heard he’d really helped a women with lupus for the past 20 years. He’s in practice with his son, a tech. First I met with the doctor, who spent over an hour taking a very comprehensive history. He said traditional medicine teaches doctors to start with the symptoms, come to a diagnosis, and then treat the symptoms. He explained that what he does is different in that he looks further back to the causes of the disease and starts his treatment there. Ok….sounded reasonable. He took quite a few vials of blood.
The next step was to go downstairs to his son and get tested for the causes. With blind faith I went, not even asking about what the procedure entailed. What it turned out to be was three hours of testing using some kind of probe on the meridians of my fingers which produced computerized data for his father. (For the uninitiated, meridians are the energy fields used in accupuncture.) This cost $550. and was not covered by insurance.
I then went back to the doctor at a later date for the results. The blood tests were unremarkable. But the computerized meridian tests indicated all sorts of parasites, bacteria, viruses, low functioning adrenals, and lymes disease which I have apparently had for at least 8 years. I have been tested many times by my rheumatologist for lymes and adrenal functioning but he and his son explained the test was for “stealth” organisms which hide by embedding in the organs and escaping detection of traditional medical tests….He said that the hidden stealth organisms are what cause the autoimmune system to attack the body.
He offered an eight month treatment plan, to the tune of several thousand dollars, none of which is covered by insurance. To start with, animal stem cell injections. Then various kits from his son with herbal remedies which would definitely help my immune system. I reminded him I’d come in for help with lupus and he said, “Oh? IS it lupus?” He suggested I not tell my regular medical doctor about the treatment since they’re so skeptical of alternative medicine, and then let him be surprised after the treatment with the improvement in my health and THEN tell him how I’d gotten better. (Ok, even as I write that I am embarrassed…what BAD medicine it is to NOT practice coordination of care!)
So now I finally decided to do some research (duh) and I find out that homeopathic remedies are so diluted that basically there is nothing of the original “essence” left by they time you take it. Lots of talk by traditional medicine of no research, just placebo effect.
Responses, anyone? I would so appreciate them….
You have to be a baby boomer to appreciate this I think. Click on the link and be SURE you have your sound on 🙂
He reports that Amity Pierce Buxton, founder of The Straight Spouse Network, estimates that as many as two million straight spouses will, often suddenly, traumatically, and by accident, find themselves discovering that they have a gay or bi spouse. The article also reports that Joe Kort, an Imago therapist specializing in gay issues, has seen couples negotiate arrangements other than splitting. Some agreed upon solutions have been allowing one or both parters to have relationships outside the marriage, allowing the bi/ gay partner to use porn and webcams but not meet sexual partners face to face, or the bi/gay partner agrees not to indulge in outside sexual behaviors or porn.
What a tough and painful situation for everyone involved…particularly where there are children…or the spouses still love each other… What would you do?
I just read an article about a California surgeon facing trial in an organ donation case. He is accused of hastening the death of a very ill man in order to harvest his organs. The man’s mother sued the hospital and got a $250,000. settlement, though the hospital admitted no wrongdoing…hmmm…
It seems so morally admirable to be an organ donor, at least in theory. Like giving blood. But I confess that its exactly for this reason that I said no when asked recently if I wished to be an organ donor. I would not want to live on life support, but I frankly don’t trust anyone except my loved ones to make the decision to pull the plug. At that point, I would be more than glad to help someone else live a longer or better life as I leave this one. (Not that anyone could even use my diseaed organs, I don’t think. Maybe my eyes..)
But I don’t want medical staff, or anyone else who doesn’t love me, speeding me along on my journey for purposes of expedience.
How about you? Are you a donor? Or not?