Access to Safe and Appropriate Dental Care for People With MCS/ES: Part 3

Part 3: Things I Need to Do to Survive a Trip to the Dentist     

(I have severe MCS, the measures I need to take are not necessary for everyone)

In addition to making sure I am fully prepared for what I need in order to survive the days following a trip to the dentist (supplies, food, frozen foods, etc), I have to prepare for the actual visit. Depending on my state of brain fog and or brain injury symptoms, this can be very time consuming and challenging.

If possible, I discuss these measures in advance with staff when I make the appointment, to make sure they are prepared to accommodate my disability related needs, and can be comfortable explaining them to other patients who might have concerns when seeing me.

At the cabin, getting ready to go to the dentist
At the cabin, getting ready to go to the dentist
After one dental visit when I came home with all kinds of fragrance residues that the previous patients left on the chair, chemical residues that would not wash out of my safe clothing, I started taking a sheet of mylar (aka emergency blanket made of polyester and aluminum) to cover the dental chair with. These are fairly inexpensive and can be re-used many times, unless handled roughly. These can also be used to cover a car seat when someone “unsafe” is in your safe car, or if you are in someone else’s car.
Note: these are best aired outside for at least an hour before use. The last cases I received (early to mid 2011) have one side with a chemical odour that (to me) resembles the odour of bleach (and triggered my fibromyalgia when I was using one as a curtain even when I couldn’t smell it), so I use a bit of painters tape to mark the good side and put the bad side down on the thing I am covering. I cannot use this for long term situations like home furnishings, but for temporary measures it can prevent more problems than it causes.mylar

I’ve worn a tyvek suit (I try to have a few of these on hand for repair or other chemical laden people to wear when entering my home, also aired out before use) to protect myself and my few precious articles of safe clothing from most (but not all) of the fragrance and other airborne chemicals. (Note, that if you have to use a washroom and remove the suit, the fragrances will still getcha). It doesn’t make me happy to be purchasing products from chemical companies in an effort to protect myself from their other products, but what else can I do now?

The last dental office I went to said they were fragrance free, except that the soap in the washroom had fragrance (I didn’t look for a fragrance-emitting (air”freshener”) device, I was too sick by the end of my appointment) and their carpet runners were cleaned with fragranced products. All these are volatile and cause 2nd or 3rd hand exposures.

A tyvek suit without me in it
A tyvek suit without me in it

I have asked in advance to have oxygen during the whole visit when making the appointment. This can cost quite a bit, and it varies, so ask. Some dental oxygen masks have been  made of phthalate laden vinyl, others have been better. It might be possible to discuss this in advance. I haven’t had luck searching dental supply outlets to see what’s available. We can buy and bring our own Tygon tubing (safer than the regular vinyl tubing), but there are different sizes and who knows if they will be compatible. If there’s a tolerated medical tape, then that might work if the sizes aren’t compatible, but it might not. Just another thing on the list of preparations to research and discuss.

I cannot drive myself, because even if I was able to get myself to a dentist, I would not be able to get myself back after the exposures, so I have to arrange for someone to drive me there and back, someone who won’t freak out about being seen with someone wearing a tyvek suit and mask, and can handle it  if I’m really struggling on the return trip home.

My father used to take me. He saw how sick a trip to the dentist could make me. He passed away a few days after my last visit to the dentist. I know he was very worried about me being able to manage on my own at the cabin after that extraction. I don’t know how much that contributed to his fatal heart attack. The woman who made sure I didn’t die while at the summer cabin during winter, took me to her dentist when I was experiencing severe pain that November. She had a pretty good dentist, and she was absolutely amazing with the precautions and preparations she took to make sure I was as ok as possible during the long trip and while at the dentist. Everyone should be so lucky as to have someone that caring and responsible around! But I have yet to find anyone in the Ottawa area who can help me here.

Homeopathic remedies have been a lifesaver for post extraction dental pain, as I cannot safely use pharmaceutical pain-killers due to the synthetic ingredients.

For dental work and some other types of injury, a couple of remedies that have almost universal benefit are Arnica and Hypericum. Arnica is good for injuries like getting your finger stuck when closing a car door, and Hypericum is good for injuries around nerves. I was advised by a homeopathic doctor at one point to take a 200C dose of Arnica before the extraction, and to alternate between Arnica 30 and Hypericum 30 after as needed. For me that was every few hours the 1st day and almost none the next. One dentist I went to even had some available for his patients! I had my own.

Something I have not been able to do yet, and have run into trouble with both the numbing agents and filling materials as a result, is the materials compatibility testing.  For me it’s an out of pocket expense and an office access issue.

I currently have some serious, long festering dental issues that need to be addressed, preferably sooner rather than later.

My challenges: lack of access, ODSP (finances), lack of a personal support

Sadly, like Doris,  I and others are also between a rock and a hard place, without equal access to safe and appropriate dental care.

I live in the southern Ottawa, Ontario area now, and have to find a dentist who has a reasonably accessible office (see Part 2), who accepts ODSP dental insurance, and who is willing to take on someone with severe MCS/ES.

My ODSP worker did find out that IF one of the Gatineau Quebec dentists were to accept, they could bill the ODSP dental plan insurance company, but the reimbursement is for much less than what a specialized dentist charges, and it doesn’t cover the extras we with MCS/ES need. Yes it’s better than nothing, but it is still discriminatory coverage that doesn’t provide equal access.

I haven’t called to see if the dentist would agree to accept this type of insurance, because I have not been able to find a safe ride there and back, and I can’t afford the oxygen that I would require while there (ODSP does not cover this) and I haven’t been able to get material compatibility testing done either, due to lack of finances and because it would also require an extra trip that I have no ride for.

The obstacles are enough to make your head spin!

So, in the meantime, I have severe bone loss and infection in one part of my mouth, and one of my front teeth is quite loose and is going to fall out eventually. These infections have been ongoing in a more serious nature for at least a year and a half, if not longer.

I have tried to find a safe enough for me ride to get to a dentist, someone who can also wait and bring me back home. If I had been able to find anyone, even a paid volunteer from the agency that has paid volunteers for seniors and disabled people, I could have called around to see if a dentist that was safe enough for me was also willing to accept the ODSP dental insurance AND be available on a day that I could get a ride.

That’s a lot of IFs that need to line up…

It was a bit easier going out and meeting people while at the cabin, because the outdoor air was so much better there, and there were much fewer people. Here I get dinged (or rather assaulted by toxic chemicals) too often just outside my door (or inside if I open the window when people are doing laundry), and there’s no place to go or way to get there where it would be safer for me to meet people. And since we with MCS/ES aren’t in anyone’s official mandate to “serve”, there are no organizations we can call who provide fragrance free assistance.

I did discover via the Dental Society that there is a dentist who does home visits in this area. I called, and he actually uses fragrance free laundry and personal care products, although still the conventional toxic ones, but they were at least not as bad as the fragranced ones.

He confirmed what I suspected, that I have some serious gum disease and bone loss, and that one of my front teeth will end up coming out, sooner or later. It is loose and occasionally very painful, shooting up to my brain. If the pain becomes too much, I will need an extraction instead of waiting for it to fall out on its own. But then I’ll need a ride and the other special stuff I don’t have access to or can’t afford…

I’ve already had 3 extractions because I didn’t have timely or safe access to dental care. One of them, the last one that was done just before my father died while I was staying at the cabin, (he knew how much dental visits affected me because he had accompanied me to the last 2 extractions in Toronto) has never really healed properly, and I haven’t been able to eat on that side of my mouth since then, because food gets stuck in the gums and then it gets more infected.

All the teeth in that quadrant are loose now. And the infections are ongoing. Salt water rinses are helping a bit, but the infection could spread and cause other more serious problems, I am told.

I also have a cavity in one of my good teeth on the other side, but I have no way to have it addressed now, before it becomes a huge cavity.

False teeth or dentures are probably not an option for me, as I don’t tolerate synthetics against my skin (and that would include plastic in my mouth). I haven’t done much research to see if ceramic teeth exist, or if there’s a way to use them without plastic in a mouth with some serious bone loss, but I am pretty certain that at this time, the expense would not be covered by ODSP anyway. And, I’d certainly need material compatibility testing, which also isn’t covered. And assistance to get to and from appointments.

If I lose more teeth, I won’t be able to chew. I have to make pretty much all my own foods from scratch already, and to get all the nutrients that I need, would need a juicer and a blender that have no plastic touching the food, so either glass or stainless steel, like an old Vitamix. Glass and stainless steel equipment is more expensive than plastic, but most plastic causes adverse effects in me.

Again, not covered by the Ontario Disability Support Program. Some people have even had major obstacles thrown in their way to get a regular plastic blender (money is available for purchasing a blender for patients with dysphagia/swallowing or mastication difficulties only ).

I wonder if toothlessness would qualify?

I wonder how long I can last before the infection spreads? Before more teeth become loose? Before more of my bone is lost?

Oh, and there are identified connections between MCS/ES (autism) and dental problems. Glutathione issues and oxidative stress… interconnections… chickens and eggs…

Effect of dental metal ions on glutathione levels…  among others that I cannot find now… It might be that the metals and other types of incompatible fillings actually cause more oxidative stress, gum disease and bone loss in some of us with MCS/ES. Perhaps that’s why so many people have their health improve when their mercury fillings are removed…

I will close with the same things I said in Part 2:

Most people just pick up the phone, make an appointment to see their dentist have a couple of hours of discomfort, and are good to go for another year. For many people with MCS/ES, a trip to the dentist can require days to weeks of preparation and research, and still result in a several month recovery period because of chemical (usually unnecessary fragrance chemicals and toxic cleaning products) and financial barriers to safe and appropriate access to basic dental care.

I think something needs to be done to make safe, appropriate dental care accessible to everyone.

How difficult is it really, to have even one private room in a dental practice that has good indoor air quality and staff who use fragrance and toxic chemical free personal care and laundry products?

How difficult is it really, to have a supply of safer dental products and materials on hand?

How difficult would it be to create even one mobile unit that could travel each province or state providing basic, dignified, dental care to those of us who cannot receive it otherwise?

3 responses to “Access to Safe and Appropriate Dental Care for People With MCS/ES: Part 3

  1. Crazy Mom Crafts A Lot

    I’m so sorry. I live your story as well in Arizona in the US. On top of that I’m a single mom again and my 17 yr old has to do everything. Not only has it made my life miserable but it has horribly affected my children. There are too many of us now for there to continue to be excuses from those in the medical communities for not making reasonable accommodations. We are people and need and deserve help too!

    • It’s so challenging. I am sad and glad your 17 year old is helping so much.
      And I really hope that someday soon we’ll be treated like humans and be able to have our basic needs met without being ignored, trivialized, assaulted, etc. It really wouldn’t be that difficult, if only people wanted to… That so much of the medical community doesn’t want to, and would rather subject their own to continued exposures than accommodate us, is truly bizarre…
      We need more people speaking up and demanding healthy change!

  2. And this is how it still goes when discussing access needs:

    The Effort and “Inconvenience” of Single-Handedly Trying to Remove Systemic Barriers to Access

    The Effort and “Inconvenience” of Single-Handedly Trying to Remove Systemic Barriers to Access

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.