Wednesday, March 26, 2008

great lupus advice- from an MD even!

Andrew Weil is very open-minded for a doctor.
This is some fantastic advice on dealing with lupus, whether your own or your loved one's.

He must have gone through some serious soul-searching to reclaim his humanity after surviving medical school. Amazing stuff.
Read it!

Tuesday, March 18, 2008

Girl in medical dispute dies

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.,0,3182716.story

Chelsey's letter to the judge:,0,5299403.story

interview with mom,0,4161167.story

Monday, March 17, 2008

The Devil You Know

The reaction I had to reading the prednisone literature when i was finally
diagnosed in 1993... "Osteoporosis, diabetes, hair loss, high blood pressure, frequent infections, mood swings,weight gain, cataracts, acne, insomnia"... was "Not no, but *hell* no!"

I refused to take it because of all the short and long term side effects. I figured I could just deal with the pain and the whole thing would eventually sort itself out. I kind of think of it as "the devil you know"- meaning I was used to being exhausted and in pain. Those were known entities. But osteoporosis and cataracts? Weight gain and acne that I couldn't control? I wasn't ready for that. So, I did not take anything, and I got sicker and sicker and sicker and nearly died. It did not help that I went to the rheumatologist who literally cussed me out for not taking the prednisone, without addressing my concerns and educating me. Finally, months later, and with a different doctor, my will was broken and I took the stupid prednisone. It saved my life. It also made my hair fall out, my face blow up, my skin look horrible, and I was so anxious i thought i would climb the walls (if I could just get out of the chair).

As soon as I had some energy, I started seeking out alternative medicine so i could do things to help me get off
the prednisone before it killed me!

So if you're sitting there with lupus not wanting to go on any meds because they are toxic (they are) or you think "I can take it"- you can't go on like this. don't be a hero. get some relief. chronic pain is tough on your soul and chronic inflammation is tough on your organs. you gotta get some relief.

After I got off the prednisone following about 9 months on it, I went for years just putting up with the pain and
inflammation (again, but I wasn't debilitated this time- yet) because i did not want to go back on the
prednisone. This time I knew that prednisone devil, and the lupus devil. And I still chose the lupus devil. That's how crappy being on prednisone is. Did I mention it tastes like rat poison?

After 16 years living with this thing i can tell you, it's not just going to go away by waiting it out, and
the inflammation is very dangerous. It can raise your blood pressure, send you into heart or kidney failure, damage your organs and put you at 18 times greater risk for stroke. i had 2 strokes in 2002. i am fully recovered now but the road was long
and hard and I'm still paying the bills on that one!

Yes, some of the drugs used to treat lupus are very toxic and can cause other diseases if you're on them long enough. But here's the thing- you can die from lupus, too, and a lot sooner than you would if you had instead been on the meds. My advice (to myself) When the lupus is flaring out of control, get on the meds, get the thing under control, then improve your diet, lifestlye, environment (workplace and home) and stress management and get back off the drugs.

I'm not a fan of taking pharmaceuticals, but it has become a necessary evil at points in my life. For those of us with painful chronic diseases who have to at least temporarily take something so we can get back on our feet and deal with this thing properly, maybe it will (literally) be an easier pill to swallow if you promise yourself that as son as you feel better, you will start seeking out some natural ways to heal yourself that you can do alongside the prednisone/ cellcept/ whatever you're taking, so that you waon't have to be on it so long that you develop lymphoma or something else gnarly (like unpayable credit card debt!).

We can get better. It's not all devils.

Monday, March 3, 2008

lupus- a laughing matter?

i've pretty much given up on people "getting it" if they haven't had some direct experience with lupus or something similar. i get tired of being judged or blamed for my illness, so i generally don't tell anyone I even have a chronic illness until I figure out they can be trusted not to say or do something hurtful/ idiotic.

it ticks me off that comedians use the word "lupus" as a punchline. they would never use the word cancer as a punchline.

i have heard the word stroke used as a punchline and i didn't think it was funny at all (of course i've had a stroke- that may have something to do with it).

maybe when someone asks me what my diagnosis is, I'll tell them I'm a comedian. that really should be a disability. noone normal does that for a living, trust me!