This here is my Medicalert bracelet. My new one that is. In 2009, I threw away my old one because I had recovered so much that I did not see being exposed to chemicals as a threat to my health because I wasn’t having painful, life impacting symptoms. And I just didn’t see the need for it. As soon as my health improved I stopped paying my yearly fee, and stopped wearing the bracelet: it was a plain stainless steal emblem attached to a black velcro sports band. However, ugly fugly that it was, it would have still done the job of identifying the chemicals that I was sensitive to, and told the medical staff what treatment I needed; and it created a feeling of safety whenever I left my home. I threw it out when I left the farm house, we were living at, and moved back to the city. In some ways, I feel totally stupid believing that I was cured. But if it… when it happens again, I’ll still believe I’m well/cured because it’s a great state of mind to be in. Who’d want to hang onto the idea of being sick, especially once you have the freedom to do almost whatever you want? (Hence throwing the MedicAlert bracelet away.) Yes, maybe that oh-I’m-so-fuckin-cured-now state made me behave in ways that caused me to get sick again. So, next time, I’ll be more careful; I’ll never go back to using a whole lot of chemicals again/or living near mould, because I’m living proof that they can build up in the body and cause a relapse (or effect the immune system, thus causing sensitisation to them—which ever theory works for you)!
My condition is now worse than it’s ever been, and I’d forgotten all about the bracelet until I saw this post over Lindsay’s blog, Musings of a Dysautonomiac, a friend of Rachel’s over at doilooksick, and of author’s, Kathryn Treat over at allergictomylifemybattle, and I realised that that was exactly what I needed to help me feel more confident when going out and leaving my home: all these people have invisible illnesses. (So, thanks to those lovelies!) And, I can’t say that one illness is more serious than another, but I can say that anyone who has an illness that’s invisible, absolutely needs one of these babies!
I’m lucky, I have knowledgable doctors and specialists, and if there ever was a medical emergency, I’d certainly want anybody who was medically assisting me to have these guy’s input, and I’d need them to advise medical staff. And I’d want any medical staff who were treating me to actually treat me without harming me. It’s no biggie really; but if they don’t know that I’m chemically sensitive, and I can’t tell them, then it could cause a massive problem for me. (And, now that we have the Hospital Guidelines for people who are sensitive to chemicals or have MCS, the process is a lot clearer. For staff and for me. I used to be scared to go to a hospital; I’m not now because I know there is a formula for all medical attendants to follow.)
If you have a medical condition that causes you to wonder that, in the realm of all freaky, unknown possibilities, if something were to go wrong, how would medical staff know certain things? Then you may need one of these gorgeous little jewels to help you chill out a bit.
This is what’s on my emblem:
CHEMICAL
SENSITIVITIES:
PERFUME, SOLVENTS,
VEHICLE EXAUST.
(WEARS MASK)
On the emergency card that I carry in my wallet, and another that lives stuck to my fridge, it says:
(The same as above +): Medical Conditions: chemical sensitivity, associated with sinus, eyes, upper respiratory symptoms, dry eyes, headache, nausea and musculoskeletal system.
Allergies: (Here the list gets longer because there is more room): Sensitive to moulds, perfumes, nitrogen dioxide, vehicle emissions, wood smoke, and inhaled allergens (and some medications, which I’ve omitted from here).
Medications: (In here are the Medicines and supplements that I take) Wears a mask and avoids chemicals to which she is sensitive to.
Other information: Please refer to the Multiple Chemical Sensitivity (MCS) Hospital guidelines and the links as noted in ‘other notes’
See that bit above about the MCS Hospital Guidelines? I gave the MedicAlert people a hardcopy to keep on file, which makes me feel secure in the knowledge that I will be treated with the appropriate care.
(The links to where they are kept on the web are also on file. Except the Victorian Government archived them, asking people to use the contact form to request a copy; so I asked them nicely to please put them back up because people can’t email and wait for this important document in an emergency! So that’s why I ended up printing a copy and posted them in to go on my file. You, too could do this. (And yes, the lovely people working for the Victorian Government put them back up!)
Now, here is something to confuse to you, I’m not sure… Even though I titled this post ‘MedicAlert and MCS’, I don’t identify as having Multiple Chemical Sensitivity (MCS), although my symptoms are the same, the treatment is the same, and so are the things that improve my health after an exposure (exactly the same as compared to an individual with MCS) and all of these are exactly the same as those for MCS.
What is Multiple Chemical Sensitivity (MCS)?
Here’s an extract from Allergy and Environmental Sensitivity Support and Research Association Inc.(AESSRA), Australia’s number one association for chemical sensitivities and MCS:
The 1999 Consensus Statement criteria for Multiple Chemical Sensitivity (MCS) are:
1. The symptoms are reproducible with (repeated chemical) exposure.
2. The condition is chronic.
3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome.
4. The symptoms improve or resolve when the incitants are removed.
5. Responses occur to multiple chemically unrelated substances.
6. Symptoms involve multiple organ systems.(2)
I don’t identify as having MCS because nowhere in any of my files is it written down by my treating doctors as ‘MCS’: two specialists have it down as chemical sensitivities to various chemicals, and my GP calls it chemical allergies. The two specialists that I see, even say that it has different causes: one specialist says it’s an immunological response (like an allergy but the mechanisms are different) and avoidance of chemicals is key; and the other one says it’s partly that, but it’s also the body becoming over toxified, therefore, it’s a toxicological response, and the body is depleted of vitamins and nutrients, and that avoiding chemicals entirely is not good because the body cannot build it’s own resistance/immunity up (this doctor does not support me going out and getting sick from exposures, he just thinks that 100% isolation is detrimental in the long run!). Two completely different ideas. Two different treatments. Same diganosis. I don’t care which one is right, and both doctors have helped me immensely over the years; so when I got better, I could not pin point what exactly helped me… and it didn’t matter then, not so much as what it does now (cause I’d really like to know this curing factor!). So with a multi-pronged approach and baby steps I’m following the same path, including covering my but with a Medicalert bracelet!
So I don’t have MCS, but I wan’t to be treated like I have MCS? Confused much?
MCS is a recognised, diagnosable condition in many countries overseas (Germany, Denmark, Sweden, Japan). It does exist. And in the US, and in Canada it’s recognised as a disability. In Australia it is too. But it’s not recognised by the Australian Medical Association as a medical condition—as yet. (And this would be because of the two examples above: doctors don’t agree on the cause, or the treatment.) So I can’t go talk to a doctor I don’t know, and say that I have some illness that he says he doesn’t understand cause it’s not in his medical book. And I can’t it because then it’s my job to explain it to him, even though I have no proof to support that I have it. I can’t and I won’t put myself through that. (I know, I should just take one for the team and walk around saying: “I have MCS.” But I need to get on with my life. I need to go to Uni. I need/want to get work one day. And I need to have people understand me because I need their support.) However, I can say that I have chemical sensitivities (which is my diagnosis but it’s not an actual disease or a condition); and if people don’t understand about chemical sensitivities, then I can say I have chemical allergies or inhalant allergies, and I can produce a lot of proof via testing and treatments and doctor’s letters that show, yes, I have chemical sensitivities/or ‘allergies’ and need to be treated as such. And, yes, it’s a disability and (sometimes) needs to be treated as such. But if I ever go to the hospital, I want to be treated as if I have MCS…
So that’s why my MedicAlert bracelet says ‘Chemical Sensitivities’. Get it?
Don’t you just love my new MedicAlert bracelet? Haven’t they changed over the years?
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Just for you: MedicAlert Links
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More Bloggers and MedicAlert:
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Iphone App
The iPhone app, ICE 123, that holds emergency information (thanks be to doilooksick for this info) for people who don’t want to wear an ID bracelet:
– Free! Full features like the paid version (Except camera & full health description view)
– Make family cards
– Customize ICE labels*** It is a normal practice for Police, Fire & Paramedic personals to call the phone owner’s near & dear relations in case of emergencies.
*** In Emergency Situations, your senses never work, but your iPhone can help you.
For more information, click here
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Allergy Wristbands Australia
Allergy Wristbands for children and adults
Cheers
Here’s to never going to hospital, ever. And the only point of this post only ever being to help someone else!
x
Update (February 2013)
Have you seen the new Australian MediAlert community service advertisement (CSA) on free-to-air television or on Foxtel in recent weeks? If you haven’t, click here or to see an extended version click here or watch the extended version below (the shorter version has far more impact, as it’s dramatic, it makes you feel awful for the actors even though it’s not real life (I got all emotional).
If you have a MedicAlert Bracelet, here is some information about updating your details.
Mayo Clinic just found super high toxic levels of copper in me. I am severely allergic to metal from this and the synthetic fabric wrist bands wouldn’t work either. So I put tape on the back of the metal part, and tied it on with organic hemp. Mine says “Chemical intolerance. anaphylaxis to petrochemicals.” Even though I am not anaphylaxis. But it means fatal allergy. A paramedic friend helped me word it so paramedics would stand back and think before doing anything rash. I never thought of sending the hospital guidelines to Medic Alert. However, no one ever looks at my bracelet at the E/R. They just want me to remove my mask and say what is wrong. Sigh. However i was refused an apartment because the landlord saw it and my mask.
Thanks for passing along the app info and for crediting moi! Great post, glad to be helping out! 😀
Much nicer bracelets and a very, very good idea even if it’s not official you have MCS. I don’t believe you claiming that is keeping you sick. You are pro-active and positive and definitely looking down that road for recovery. I’m not sure one recovers completely, but you reach a stage where life feels a whole lot more normal than it used to and that is something to be grateful for and look forward to. Big love ♥
Yes, that is exactly what i wanted to say but couldn’t articulate it! And you know, for the bracelet that I bought, it is advertised that it is NOT for everyday use because it has Swarovski crystal ‘elements’ and it may not last long. But I chose it for everyday use because i figure that i won’t need if for that long, if that makes sense. And i was thinking of making my own bracelet out of crystals, if needed. Any clues as to what sort might be good?
Ps. I’m looking forward to that stage. ♥
Very nice post – and thanks for the pingback!
Another nice new feature from MedicAlert is custom smartphone wallpaper with the MedicAlert phone number and member number. I use a passcode on my phone so I set it as the unlock wallpaper – even if they can’t unlock my phone, they can get the appropriate medical info from MedicAlert, and my emergency contacts are included with that.
That’s okay. My pleasure. Wow, what a great idea. I was wondering about having information on the phone, and as to how would anyone know where to look, or even if they would look. So, are you saying they can see it on the cover? How do I find this app? I’d like to get it for myself, and add it to my post for my readers. Modern technology is amazing, hey?
Oh, I like your blog’s content and i’ll be keeping an eye out for more.