Alright, so I have some pet-peeves. I'm not perfect.
I never claimed to be a doctor. I will never claim to be a doctor. But I know doctors well. I know the system well. My mother is a very successful nurse, I’ve worked in hospitals, I’ve worked for Disabilities agencies, and I’ve been living with Chronic Illness for 10 years. I’ve been around the block a few times when it comes to the health care universe. Which is why this scenario that occurred yesterday bothers me.
One of my managers has recently been diagnosed with High Blood Pressure. And I mean very recently. He saw me take some Ibuprofen and commented about how I’m too young to be having joint pain! (ok, so we’ll call this pet-peeve number one, but you can’t blame him. The truth is, most people my age *shouldn’t* be having joint pain. It’s not his fault for not assuming I have a Chronic Illness.) I very simply explain that I have “a Chronic Illness” (I didn’t feel the need to be specific) and that standing in heels aggravates my knees. “No big deal,” I say. “Ibuprofen works wonders.”
He then goes on to talk about his recent diagnosis and how his doctor recommended this treatment plan to detox his system. I say, “Detoxing is always good. Be careful to research what you’re doing though. But yeah, it’s a very good way to reset your body when it’s out of wack.” Making it obvious that I know what Detoxing is, and that I’ve been through the process more than a few times. I know what he’s getting at. And I already hate it.
But he walks away, and I sigh with relief. But no more than 15 minutes later, he comes back with a stack of paper work. Of course, his detox program (which, naturally, is a very expensive all inclusive treatment plan that needs to be done in full. No mix and match allowed) all printed out for me. He goes on and on about how this is the best stuff on earth. How I’d be just fine if I would look into it.
He’s my boss, so I take it and smile and say thank you. But if he were anyone else in the world I would say this: “You sir, have been ripped off. What you hold in your hand is no better than a pamphlet to a faith-healing retreat or a get-rich-quick scheme. Detoxing by definition is a good thing to do for anyone, not just those of us who are sick by definition. But there is no one right way to do it. And you don’t need to pour hundreds of dollars into some wealthy man’s pocket in order to do so. More importantly, I know this because I’ve been living this way for 10 years. I’ve trial’d and error’d more diet/health/wellness plans than you’ve ever heard of. The first doctor you’ve seen in 10 years did not just happen to have the cure.”
In honor of this frustration, later tonight when I get home I’m going to post some more information on Detoxing, and how to do it without throwing money out your window or suffering.
My doctors are pretty shit! They are all like 'Yeah it probably this so we will give you a bladder op....Oh that didn't work? Hmm well we will give you a hysterectomy......Oh right didn't work either, Right ummmm, well you have Fibromyalgia!!!'
I have been admitted to hospital that many times it's crazy, my pain levels are ridiculous, I have this stupid UTI stuff now too, along with partial and sometimes full sensory loss in both legs and hands and now I have started to develop lumps on my joints! I am so sick of doctors, I just don't ever want to go now. I have 5 (specialists) and they all suggest the opposite. I am going to request a Rheumatologist now! What's the test or signs of Lupus. I mean I can read about it, but it's always better to ask someone who knows.
I hope you don't mind me asking
Thank you <3
I have been SO eager to answer you I’m so sorry it took so long.
This is why I say we have all the power right now. It is the information age, and that is what “we” (the collective conscious of the internet) are here for. Doctors are just people trying to make money. Rheumatologists, in my opinion, are the worst. They will try to put you on drugs before they’ve even heard your full name.
THERE IS NO ONE TEST FOR LUPUS. Don’t let anyone tell you differently.
If you have at any one time 4 out of these criteria, you most likely have Lupus.
Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
From personal experience the frequent UTI’s are definitely a sign of an autoimmune disorder. Not sure about Lupus, as many Autoimmune disorders look very similar, but it’s definitely a symptom I’ve dealt with.
Don’t let doctors just guess on you anymore. If you don’t feel satisfied with their answer, tell them they need to explain it better. And if they give you a wishy-washy explanation, go get a second opinion. Fight for your answers girl.
And I will never mind you asking. You can ask as many questions as often as you want. I’ve been living with SLE, RA, Raynaud’s and other such things for about 10 years now.
Guys, I’m going to be hosting support groups at a few hospitals and libraries in my area soon. The concept I have down pretty well, it won’t be much different from the things I talk about here on my blog, just in person and with a little more of a sharing environment. So here’s where I’d like your help.
I’ve felt in the past when going to chronic illness related events that the people hosting them didn’t take our illness into consideration which is QUITE silly. (I joined an SLE group who took us to the zoo at noon on the hottest, sunniest day of the summer. We could barely move on the bus ride home.)
So far I know that in addition to the coffee that will be provided, I’m going to have some herbal non-caffeinated tea available since these meetings will take place around 6, and many people won’t be able to have caffeine that late. My question to you is what other things would you want someone to take into consideration when planning an event like this for you?
I just wanted to raise some of the concerns I have with it like a few others have but it seems my comment hasn’t been approved. I don’t agree with the message the spoon theory promotes but I was still polite about it. I’m rather offended that they haven’t published my comment, it makes me wonder…
That’s what happened with me. My friends in college stumbled upon the Spoon Theory and it was SO embarrassing. They may not be publishing critical comments anymore since not so far back a few of us voiced our concerns about Spoon Theory and accidentally started a hate war full of attacks by the sweet people of butyoudontlooksick.com.
What you CAN do, however, is become a part of my ongoing project in an attempt to create a new message to encompass life with chronic illness. I have a bunch of stories in my ask box from people telling me their favorite metaphors for chronic illness, their diagnosis stories, jokes, etc. When I have a bunch of them I’m going to see if as a group we can’t compile them into a great message.
So send me any stories/jokes/metaphors you like, and as many as you like!
It’s up for approval this week from the FDA. They say it should be approved by Thursday, and then for European patients later this year. This by no stretch of the imagination will make this drug available for you and I. The patent system is pretty messed up and it might take a long time for this drug to be affordable, or available to all Lupus patients. But it doesn’t matter.
All in all this is a good thing. Not just because we’ll be able to get our hands on this drug. But because this drug is opening up a new competitive market for drug developers. They anticipate that this drug will help Human Genome Sciences Inc. explode in terms of money and publicity and business. People are going to be fighting over us for once. More drugs, more research will be showing up rapidly.
((The cynic in me also wants to believe that while this will put drug development into upswing it will put us about 10 steps back in the development of a cure. Why cure the disease when there’s so much more money to be made in treating it? But you guys don’t have to be an angry cynic like me.))