Chesley Cruz was taken from her Mother after they decided they could not tolerate the medications and treatments for lupus.
This is not the first case of this I've heard of, but when i read about it yesterday on the web I was outraged. Our government strongarms people, esp. those with children into doing horrible medical procedures/ drugs. that is not the land of the free. that is a police state.
when i decided i didn't want to do chemo anymore, I just quit. i did not announce it to my doctors, or the clinic. i just quit going. i have lupus. i wonder if they would have been so non-chalant if i had cancer? I heard some cancer patients getting in battles and also having their child taken away because they want to quit chemo. of course, Chelsey had lupus, no cancer. I guess the difference is she was a kid, so she had no rights. They even put an armed guard at her hospital room to keep them from leaving! Something is very wrong with this picture. No one noticed when i quit going. maybe because i was an indigent (no money) patient? sometimes it pays to be invisible!
i've had this disease for 16 years and have learned there is no point in arguing with the doctors sometimes. so if i have a real hardass who won't listen to reason, i just say OK then i do what i want to do anyway. I learned that from watching my little sister. Mom would tell her to do something then she'd say OK and never do it. It was a much easier for for her than me- I always argued with my Mom then did it anyway. The whole passive aggressive thing is so much easier (and you get your way!).
this girl wanted to quit the meds (understandable- i hate them too- i think we all do) and go to dr fuhrman, who does natural healing through diet. i have his book and plan to see him myself. but it is not an either/ or situation. in fact, he carefully weans you off the pills while doing the diet.
if i had the opportunity to get in a time machine and advise this girl adn her poor family i would say continue going to the regular doc, but *also* go to dr fuhrman. when the doc hands you prescriptions, say thank you, see you next month, take them, give them a chance to supporess the disease, then let dr fuhrman (who is an MD) help you decide when you can taper off the drugs. I would also tell the Mom do some reading and talking to others who have lupus- these horrible side effects are normal but necessary to get the disease under control. Give them a chance to work, to get the disease under control, then try the natural stuff so she can get back to being her old self in time. It sounds like they did a horrible job of explaining things to Chelsey and her mom, and instead just tried to get them to follow orders (which of course is just going to make them dig their heels in- that's how any normal person reacts to such behavior)- while the poor mom watched her daughter appear to just get sicker. They switched treatments so many times none of them had a chance to work.
if you suddenly stop taking prednisone or any of the drugs used to control lupus, you will get very very sick. you have to taper.
i think it's wrong what they did to Chelsey and her family, and other families who do not wish to take toxic drugs and go through horrible procedures- taking the child away. I'm just saying there are ways to work around the system. It's like dealing with an unfair work or parental situation. You don't go at them head-on. You work around them. You may be right, but trying to prove your point to them isn't worth the abuse you'll take. Or losing your life.
This was a tragic and unnecessary chain of events.
http://www.courant.com/news/local/hc-lupusgirl0312.artmar12,0,3182716.story
Chelsey's letter to the judge:
http://www.courant.com/news/health/hc-cruzletter,0,5299403.story
interview with mom
http://www.courant.com/news/health/hc-lupusmom0315.artmar15,0,4161167.story
7 comments:
Such a sad story. And yes, I can totally relate to sometimes telling doctors what they want to hear just so you can be on your way.
When my mom was diagnosed with cancer, at first she listening to every doctor. Then she realized it's not their body that has to be poked or carved into so she decided to step back, educate herself and take care of herself on her terms. I have a lot of respect for her for doing that, especially after such shocking news.
It's sad that our relationships with doctors have to be so dysfunctional!
Your mom sounds very strong.
And I echo her exact words!
They are not the ones who live with the long or short terms ramifications of these decisions. So their vote only gets to count... oh let's say 1/5. wasn't that in the constitution? :-0
Yes, and it's sad that doctor's relationships with pharmaceutical companies seem more important than the ones formed with their patients.
amen to that!
i've sat in a paper towel gown waiting for the doc, only to finally stick my head out into the hall and see him flirting with the drug rep.
i'd wear high heels and makeup to my appt, but if i look too good, the doc will just say "you *look* fine!"
sigh.
i never wear makeup to the doc because i need them to see what the drugs and illness are doing to my complexion. i don't do my hair either because they need to see when it's thin and damaged. give up all dignity in order to be taken seriously!
Hahaha, once again I can totally relate!
Sad story...I have taken matters into my own hands somewhat. I have been on 80mg of predinsone and on plaqunel. I broke out with vasculitis last summer while taking the high doses. I had a skin biopsy done and it came back as being drug induced. HELLO...the only drug I was on was Prednisone. My Doc told me that was "POPPYCOCK!" My last visit to him last month he suggested that maybe we needed to do Chemo. I asked what kind of chemo and why he felt it was needed. He told me that I was a smart girl and that I could look it up on the internet. I have an appointment next month with a NEW DOC IN A DIFFERENT CITY to see if she can shed some light on the subject. He was such a jerk!
so wait a minute, first you tell him the prednisone caused the vasculitis and he said you're full of crap then you ask him a question and he tells you to go find out for yourself because you're smart. soudns like he is easily threatened.
what an ass! I would totally register a complaint with the board of medicine. I've had several jerky doctors with whom i've had to part ways. all rheumatologists. what is it with rhuematologists? they really know how to pour salt in the wound.
80 Mg is a *lot* of prednisone.
i had the chemo before. it's another way to suppress your immune system. they probably want to give you cytoxan. it made me very sick for about 3 days. i onyl did 2 treatments. i couldn't tolerate it.
this is why i do stuff like gluten free diets and acupuncture, so i can take fewer drugs. they all have horrible side effects, some of them serious and long term.
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