EI/MCS/Chemical reactivity /COPD

[Ella1]

akrvbob, hope I'm not stepping on your toes with this. (Now I see you are an administrator. I REALLY hope I'm not stepping on your toes...)

Suggestion from the PACK RAT thread, started by anewbiewannabe.
Posts 15,  29, 30, 32.
I have had MCS/EI   (Multiple Chemical Sensitivity/Environmental Illness( medical code  989.89 and 989.90)  for over 20 years, and also have severe COPD and use O2. I have been in my house for most of those years, leaving for short forays generally to medical appointments, for groceries, or walks in the local parks. I changed my way of eating about a year and a half ago, and my ability to breathe has improved, at least a little, and it seems that the reactions to fumes and fragrances has possibly lessened, perhaps changed a little.
I had gotten so good several months ago I started talking to my daughter about a road trip and she decided to come along. Things were good until I got hit for a few minutes with a full strength pine-sol attack. I was isolated again and SOB for several weeks, increased P and O2. Finally recovered, then shortly got the bad cold(?) that's going around. That's where I am now, and still hoping to do some camping and traveling.
I had a new marine deep cell installed a few days ago, attached to a 600 W inverter.
I have an Austin Air air purifier that is supposed to clean (Designed specifically for allergy and asthma relief; Special filtration for removing allergens, chemicals and gases from the air)  I hope it will remove wood and charcoal smoke from the van so I can. Plan for now is to use commercial campgrounds for a few days, hooked to electricity. If that doesn't work, if the fumes are overwhelming, she'll be there to drive us to dispersed camping and I can use the inverter for the air cleaner. Hopefully there would be a lot less smoke, odors, and fumes.  This way I can determine if I can have a safe environment in my van. I am also taking charcoal masks and even a half face respirator w/filters to remove fumes. And of course, all the meds including fresh Vitamin C which seems to help after an exposure, and several tanks of O2.
   
What do you folks do?
Ella1

 

[Ella1]

Thought I'd include this, too: I have an envelope in my vehicle that contains several pages of what should be done medically in case of emergency, including flagging the medical chart and immediately getting an ADA coordinator to help me get what I need. It also has signage for doors re the MCS and no fragrance products permitted.
I will get a metal tag to wear engraved something like MCS /EI/ COPD, code 989.89, ADA Coordinator needed.
Ella1

 

[gypsychic]

Hi Ella. I typed a few things out & then lost it because I tried to add a link and my post didn't save while I went to another tab. Thanks for starting the thread. I'll add some things later after I've gotten some rest.

 

[SoulRaven]

*raises hand* severe MCS sufferer here. Past 3 years slowly recovering from many years of being so severe I was unable to leave a custom-built porcelain trailer.

Austin air filters caused reactions for me; I found Aireox to be the only brand that didn't use any adhesives whatsoever (not even in their packaging) and the only one that didn't cause me issues.

I made my van tolerable using a high output ozone generator - Jenesco is a good brand. You do not want to breathe the ozone at all. It's bad stuff for even healthy people and worse for the chemically sensitive. But if used when you aren't breathing it, it oxidizes a lot of what's outgassing. It's been key to my success of being in any space without my mask.

I now keep my air purifier in storage, deferring to my chemical cartridge respirator - a.k.a. 'gas mask' - as needed. This is my typical setup and it works splendidly. My airways are the most common reaction and I can throw one of these on and it cuts out everything. Mind you it took about a year of trial and error to find one that worked for me, because I reacted to most mask materials themselves. The one I linked to is semi-disposable; ideally you get fully reusable one like this because that'll last a lot longer without bending out of shape. However I reacted to some materials in the silicone. I also personally experience reactions to any cartridges permanently connected to filters. I also react to filters on their own. The setup I've been using the past three years does cause a reaction on my skin leaving a line all around my face, and it causes headaches especially if I have to wear it for over 8 hours straight. For me, it's a magic bullet that means I can walk into just about any environment without the slightest concern of life-threatening emergency occurring. It's definitely something I recommend for severe cases.

I keep a small backpack as my EDC everywhere I go. One of the mesh side pockets visibly contains epi-pens, and also a small ziplock baggie with various other meds as well as a a dated and signed note from my doctor regarding medical care stating various things about my conditions, also the results of a reactivity test showing which known implant substances are biologically incompatible with me (had to get it done for dental work). In here I also keep a paper of scanned in all the business cards of everyone on my medical "team" and on the back of the paper I write down new names/numbers as I acquire them before I manage to update it.

I also have a sticker on the back of my driver's license stating severe MCS - anaphylaxis and gives the official number for it. The stickers were a joint effort between an MCS specialist and emergency responders in Washington State, who from what one nurse told me were sick and tired of people dying from care when they weren't aware the patient was chemically sensitive. It's been helpful sometimes when people ask for ID, I give them my driver's license and when hesitant they're promptly reassured upon checking the back.

 

[anewbiewannabe]

Ella, I can so relate to the pine sol incident! It's good that you can test things out with your daughter along to drive if you need.

Wow Bitty. I can't even begin to find words. I'm glad that you have a team that takes you seriously and that you have found things that work somewhat so that you can get out a bit. Sounds like you have put together a good team and cover your bases well. It sure seems like if there's people dying from care because of chemical sensitivity they would change their protocols!

I was thinking that I might actually have things to contribute and I may still have, but compared to what you all have to deal with I'm feeling like a neophyte. At least here now we all have other people with the same interest or need, that are dealing with breathing issues as well, that we might be able to share ideas that others haven't gotten to yet.

As for me, it took years to find a doctor to believe it wasn't in my head and years to convince family that I wasn't just being a drama queen and that it was real. There is only one doctor I ever found around here who told me yes I had MCS. He had an allergy shot and dietary program that wasn't covered by insurance and had no guarantees since he couldn't tell me what chemicals the allergy shots covered so I didn't pursue it because by that time I had researched enough to know results were questionable with the protocol. I didn't have the thousands of dollars to risk on a "might help a bit." It wouldn't have helped me get disability if I would have found him earlier either since he told me in the consult that he would not fill out the Social Security papers.

My current doctor, after trying on many of them, at least has MCS as a footnote in my records and gives me inhaler prescriptions for if I get hit where I can't breathe. Whether he really believes it or not I'm not sure, but he's the best fit I've found. I moved out to the country away from near neighbors over 20 years ago and basically became primarily isolated though I still had to do all the basic shopping and stuff associated with living. It got especially worse after all the scented detergents and fabric softeners became the standard. Whether I would have developed MCS anyway or not I don't know, but I worked in a "sick" building for 5 years sealed in with no fresh air. I had never heard of MCS back then.

Everything I've learned to do for my MCS I've had to research and figure out on my own since nobody took me seriously until about 10 years ago. I have latex allergy too, but even though it's on my hospital records and I make a point of mentioning it to any medical personnel I have to deal with they'll still not think and use the gloves or tubes or bandaids---even with the glaring "latex allergy" sticker on the front of my file.

It stinks that others have to go through this and much worse than me, but it's nice to know there are people who understand it from the inside out.

 

[gypsychic]

I too can relate to Pine Sol. It's terrible for me. Luckily I don't have anaphylaxis from any of my chemical sensitivities. I have yet to find a MD that believes MCS exists, but like you anewbiewannabe, my internist now at least prescribes inhalers . I've had nebulizer in the past but not now. It's not just the breathing difficulties, it's the muscle weakness, jerky movements, dizziness, nausea, headache and fatigue that go along with exposure.

Until this was brought up I really hadn't thought about difficulties while camping near others. I guess I've gotten used to my own way of doing things. I shop at odd hours to try to minimize my exposure to people wearing scented products. The problem with that is I can run into stores doing cleaning so I need to try to avoid that as well.

I recently purchased a similar mask to the one Bitty linked. I use the pink & yellow filter cartridges and that has been the only way I've been able to work on anything on my van. I don't know how mechanics can be around all that stuff all the time.

A friend recommended a product for using as a internal wall. Its a chemically inert plastic resin that doesn't have any VOCs is used in hospitals and industrial kitchens. Everything that goes into the van I need to consider it's effect on air quality. It makes things more difficult but what are you going to do.

After thinking for so long that an air purifier couldn't work in a van, I finally did a search today. I used to have a large IQAir that was wonderful. I did find a travel air purifier that has a 12v adapter. At >$300, I'll be doing more research before committing to any particular product but good to know at least I might be able to use one. I imagine I'll need a pure sine wave inverter to run any air purifier that doesn't have a 12v plug.

When I get to a place where I can use my laptop instead of my phone to type I'll link the things I want to add. It seems to be hit or miss if I loose my posts while trying to copy links so it can wait a day or so.

Maybe I should try to find an MCS specialist. With more and more people having issues its seems to be more recognized. Right now I've just been labeled as asthmatic but most people with asthma don't relate to my other symptoms that happen upon exposure. Not sure how they test for it. That certainly won't be fun. Let's huff some pinesol to make you sick so we can see it for our own eyes because taking a history isn't enough. Like I could make this stuff up.

My big trigger seems to be mold. If I'm around mold then I seem to be more sensitive to everything, chemicals allergens, food, light, noise, etc.

Once I get situated I'm going to go gluten and dairy free to see if it helps. I don't think it could hurt.

All this sensitivity is one of the reasons I am going to live in a van - more control over my environment. Living with others who don't have to deal with these types of sensitivities, at best I'm eccentric, at worst I'm crazy. I can't wear makeup, perfume, use antiperspirant, scented soaps for body, clothes or dishes, fabric softeners, regular lotions, sunscreens, hair products, cleaning products, candles, etc. My mom is a smoker and doesn't get that I can't be around her even after she's put out the cigarette. My sister loves glade plugins. It's different.

 

[Ella1]

The Austin Air I have now is a standard, and it's about 12 years old I think. If this works, I'll see about getting a "baby's breath" which is much smaller. I couldn't do an ozone machine. The van itself has always been safe for me. It's the fumes and fragrances I may run into that I may need to eliminate from the van air or my clothing. My airways/lungs are also the first reaction, but far from the only one. Depending on several things my whole body might be injured as I'm sure you know.
What is "EDC"?
I got my half face respirator in 1998. It was modified for me so I could attach an O2 hose to it, but it makes more sense to just use the canula. I don't know how well I will be able to tolerate it. After all this time, it still has an odor. I talked to one of the 3M people a few weeks ago. He said the best filters for my need was the 60923 -with a yellow label   http://www.amazon.com/3M-Cartridge-..._indust_5?ie=UTF8&refRID=0Q51WKCATKR65DR0S8CS      I still have to get those. I have others that are not quite that quality.
I have epi-pens to carry and I keep extra drugs with me in my purse. I'll add medical contacts to my wallet. I also have a card that says "no providers/procedures/treatments that are not covered by my insurance. A DL sticker such as you have would be wonderful. I have a wallet card but it could easily be overlooked.
So I have several levels of protection and no idea how well any will work or not. This is part of what this journey is about. I don't know if this is fool-hardy or freeing. A recent 1/2 hour exposure to perfume had me non-functional for a day. This attempt may be a really stupid error on my part.
Ella1

 

[gypsychic]

Ella - that filter cartridge that you linked is the one I use. It's allowed me to be around paint fumes, wood dust, and solvents. I was able to use some spray paint to touch up some spots after dealing with some rust. After I walked across the yard I took the mask off thinking I was far enough away. I had to put it right back on but while it was on I never had a hint of an issue. It's made a huge difference in my life.

 

[Ella1]

anewbiewannabe, Thanks for your input. You have a lot to contribute.
I've been generally fortunate too, in having medical people that understand and will provide what I need. It was not always that way, and I still run into that mindset, attitude and behavior. Even a month ago I had a PULMONOLOGIST APP. When I made the app, I asked them to remind him I am the one who needs him to not use the fragranced hand sanitizer. I got a certified letter from the office manager saying they had to use sanitizers, and a few other things. I wrote back with explanation and information. Wish I had gone further. I did tell them that there is a fragrance free hand sanitizer (a 3M product) the cancer clinic uses, and gave the full name, plus links to fragrance free facilities in various areas. When I went in for my app, I was taken right to a room, and no staff that i saw had any fragrance that I detected. Of course I was only with his assistant, then with him. I knew from before he does not use fragrances. And he didn't use the fragranced hand sanitizer.
If you are still looking for a doc, consider an industrial and/or environmental toxicologist, board certified preferably.
There are still times when I can't get out at all for weeks on end. Safeway grocers here (and in other places) has an "order on line, delivery service. Used to be a $50 minimum, and delivery fee. Used to be I could email a local grocer a shopping list and in 2-3 days, they'd gather it. I could go in, get the basket, pay, and leave. Minutes in the store rather than much longer. Do-able.
I go to stores at off times for the same reason- avoiding people and cleaners, and there are some I learned I simply can't go into: a nearby grocery store, and a local department store, because of reactions...
I do not have a sine wave inverter for my air filter, and I do not plan to get one. It's not needed, I don't think. I won't be carrying my O2 concentrator, because I cannot run it at night anyway. THAT WOULD require sine wave. I talked to the man at http://www.donrowe.com/ . 800-367-3019 He was very helpful. So I'm taking E-tanks instead...I don't breathe well enough. At night I need continuous flow at 3 lpm.
Mold is a huge problem. My original doc thinks it 's what sent me on this road.
All those things and more are toxic to more people and they don't realize it. Many of the diseases /health problems advertised could be eliminated by eliminating fragranced products from their environment including a lot of respiratory problems, leaking and erectile dysfunction problems, learning, comprehension, muscular, social, rage, speaking, on and on.
If you find yourself in a situation where you need help, if a faciliiiity is big enough--maybe over 50 employees, I think they are required to have an ADA (knowledgeable) person. Get that person if yu need. MCS/EI is a recognized illness and you can request (certain) accommodations to help you.
Perhaps if your doctor knew there is a medical code for this--989.89--he would be willing to diagnose it as a primary illness for you.

ICD-9-CM Diagnosis Code 989.89
latest release 2012
Directory ICD-9-CM Diagnostic Codes > (800-999) 17. INJURY AND POISONING > (980-989) Toxic effects of substances chiefly nonmedicinal as to source > 989 Toxic effect of other substances, chiefly nonmedicinal as to source > 989.89
ICD-9-CM code 989.89 is a specific, billable medical code that can be used to indicate a diagnosis on a reimbursement claim.
Description Toxic effect of other substance, chiefly nonmedicinal as to source, not elsewhere classified
Short Description Tox eff nonmed subst NEC
Maybe he would give you a nebulizer, too. That helps me a lot. I have a battery operated one I'll be taking.
Gypsychic, I get those symptoms too, at times--as well as others. A lot of times I don't know the trigger.
I just read your new post. It's nice to know those filters works. I need to put it on my to do list. I got stopped by that terrible cold. Thanks for writing about it. I'd like to do a couple of tours with her, but she'll have to drag the O2, maybe 2 tanks as well as my other needs. It may not be a lot of fun for either of us at that rate.
Thanks for the responses. All this has been very helpful.
Ella1
Check out the Austin Air Baby breathe filter. It's much smaller than the standard sizes and should do the needed work. I hope.

 

[Ella1]

Here's info for 3 major clinics. If you are near them, consider using them. If not, a call or letter may get you info on help in your area.
http://www.chemicalinjury.net/
Dr Grace Ziem Address: 16926 Eylers Valley Rd, Emmitsburg, MD 21727 Phone: 301 241-4346

http://www.ehcd.com/ The Environmental Health Center – Dallas (EHC-D)
8345 Walnut Hill Lane, Suite #220 Dallas, Texas 75231 USA Phone: 214.368.4132

Dr Michael Gray, Benson, AZ 300 S Ocotillo Ave, Benson, AZ 85602 Phone: 520 586-9111
Or again, an MD, board certified, working industrial/environmental toxicology, maybe also a family practice or other.

 

[anewbiewannabe]

I'm fighting a migraine so haven't been able to respond yet. It's doing better today but my words might not be well put together and I may forget things for now. Great info on the codes, traveling medical info, and places to check into. Just to give an idea about my experience with doctors---I had a direct phone number to an office at the Mayo Clinic in Cleveland for a different health issue years ago; I left messages several times and never received a call back even though it should have been a perfect fit. It would have been challenging for me to get there since it was a day long drive so I moved on.

So far on the MCS I've been able to adapt my life on my own since I had/have other health issues that required me to navigate the medical system. I'm definitely going to get my doctor to write up some papers or something to have with me even before I'm on the road since I'm on my own now. In the meantime I'm dealing with specialists on other things and dealing with the frustration of myopic specialists who only deal with one part of the problem at a time when the separate issues are all related and within their specialties---thank you insurance companies.

In order to get this written I'm not going to go back to find who said which, but I'm also one who reacts to mold and always have. My daughter has asthma so there's been a nebulizer around here for a long time. She's gotten better as she's older so gets by with inhalers. I react to albuterol so my inhaler on my current insurance is $71 so I do everything I can to avoid using it---don't have a clue if there's something other than albuterol that could be used in a nebulizer and hope to never need to find out.

Somebody, and probably more than one somebody, mentioned the other issues and changes. I react to all the different personal products and cleaners too so I've found substitutes, and florescent lights, and fresh mulch---even lavender plants.......... It does get cumulative after an exposure. We are the canaries in the coal mine and have noticeable reactions to things that aren't good for anyone in reality---AXE, anybody relate? Ugh! LOL Perhaps someone who doesn't deal with what we deal with to varying degrees will read this and think about their headaches around certain things and make changes to help their health before it gets worse.

I changed my diet years ago after having some testing done so I avoid gluten, rarely have dairy (never was big on it) other than butter, and avoid all the foods I'm intolerant of to the best of my ability as well as trying to eat organically as much as possible. If I could afford it I'd still be on the program I was on after the testing and still have more of my health. I had the best health of my life at that point. Going off the gluten got rid of a lot of pain and increased my energy. I'm in shorter supply of energy after going off the program but the pain I had prior hasn't come back except if I get near gluten.

Listening here makes me wonder if some of my other issues are worse because I'm not being careful enough---exhaustion after being out shopping, etc. I have other things going on that contribute to the exhaustion, but maybe wearing the masks when I have to go to the store would help some.

Those of you who deal with more than I probably already know this, but in case someone reads this who gets headaches in the car without knowing why will benefit from something I learned years ago----set the air in the car on recirculate so that exhaust fumes don't come into the passenger area---you may not smell them but without the recirculate these fumes come inside if you are in traffic. I keep my window cracked whenever I drive too unless I see something like a farmer spraying his fields or someone mowing the grass. I close the window and open the sunroof if stuck in traffic. For rainy days instead of using the defrost to defog the windshield use the air conditioner set on whatever temperature you need for the season (you can run it on hot in winter) and it will do the defogging without switching off the recirculate. I got tired of having to choose between breathing and seeing out the windshield and discovered that one. I'm fortunate that my car stays on recirculate unless I switch it off but some vehicles require it being turned on every time.

Short term memory issues mean I have to write notes for things that aren't conditioned in so I'm definitely looking at setting up things as simply as I can. Speaking of which, I'm sure there were other things I had thought of to add but I don't remember them currently so I'll close for now.

 

[gypsychic]

Great stuff - thanks for sharing. Axe body spray - made me laugh out loud. My cat (I could probably breathe a little better if they weren't in my life but not sure how happy I'd be - it'll b a sad day for me when I can't have furry animals in my life but I know it's a possibility) is laying on my stomach as I read ur post & didn't appreciate the interruption when I laughed out loud.

I hope ur migraine subsides soon. I've been lucky enough to find my worst migraine triggers in food and have few and far between since then. Headaches of other sorts are another story but at least I can function through non migraine headaches. Migraines and I was down for 24-72 hours. Horrible. So sorry, be well.

 

[anewbiewannabe]

Thanks gypsychic. Glad you got a laugh. Yeah, I'd breathe easier without my cat as well, but in the rearranging lives I was the one that got left holding the cat. After 8 or so years she's kinda grown on me and I take my responsibility to my babies, even fur babies, seriously. Though, a shave for her isn't out of the question! I need to bathe her soon to neutralize the dander and fur that is flying off of her with the Spring shedding.

Turned out to not be a migraine but I wish it would have been. I only get them about 3 times a year so was never able to figure the triggers. I'm on a round of prednisone now to see if it helps the inflammation. *sigh* Could be worse though. I meant to take the MCS numbers to my doctor today but forgot since my focus was elsewhere. I'll be seeing him again soon so I wrote it down in the notebook I take for next time.

Has anyone used the silk (I think it was silk) type masks in the past? We ran into a young girl with MCS at a workshop one time and that is what she used in order to be there. I'm open for recommendations on them since I'm not ready to go out in my small community in a full-on mask yet. Baby steps! Also, I'm hoping to have some help from a friend who has cat allergies too so if I can find something that works for her then I might get more help.

Thanks in advance!

 

[Ella1]

That girl may have had a charcoal insert in it, as the silk itself will not protect the lungs:

http://www.icanbreathe.com/photo.htm
Caution: The mask does not provide protection to lungs. For smoke, fine particles, gases, hazardous dusts, or chemicals seek other types of masks which are NIOSH approved for toxic gases, asbestos, silica, or spray paint. The consumer is responsible to determine the suitability of application. Do not wear mask near a flame.
For house cleaning I've been using a wet bandana (think stage coach robbers) on top of a sun visor over my nose. My ability to breathe is so compromised I can't breathe unless the bandana is held away from nose and mouth. A sun-visor (one of those "bills" from a baseball cap type thing) with the elastic behind my head keeps the cloth away. I still have to remove it after a very short time.
I plan to buy some silk and make a mask or two. Used to be--in fact I think you still can get charcoal inserts for them.
Try the NEEDS site http://www.needs.com/
I expect I'll get mine from there. -I'm not associated, haven't bought from them yet.

I wanted to suggest that, esp if you have a problem convincing your doc about your reactions, to keep track.
When I did it years ago, I made a graph, listing reactions alphabetically by body system, in a column down the side of 1/4" graph paper, and across the top line, the dates-1-28, I think it was, fit across the top line.
Whenever I had a symptom, I put a check in the appropriate box. No space on the graph for suspected trigger, but I did make notes separately. It didn't take long to see what parts of me were most affected.
Just off the top, respiratory, nervous system, brain fog/thinking/ comprehension/bad decisions, eyes, rash, joint pain, inability to form words, and more. These were entered as part of my medical records. It was a quick, easy, way to record. Even if the symptom lasted a short time. You are right-they accumulate, get over run and overwhelmed.

 

[anewbiewannabe]

Thanks Ella. Yes, I know it had at the least a charcoal layer---had forgotten that part when I asked. The detail I remembered after a few years was that the outer covering is silk. I know it was from some allergy shop but have no clue where I wrote the information down since avoidance has worked pretty well for me most of the time. It covered from right below her eyes down to under her chin. I know that her reactions were much more severe or at least apparent than what I was dealing with. Oh, the other reason I didn't get one right away is I get tired and overheated quick when breathing in the heated air in masks---may be something I have to learn to deal with. I'll check out the masks on that site.

My regular doc will probably surprise me when I bring in the codes for MCS by having already noted them. I at least know MCS is on my file because the residents he has come through on rounds with him sometimes always ask about that and about my gluten issues---so hopefully they are more aware when dealing with their own patients in the future. MCS seems to go along with fibromyalgia for a lot of people but which came first is questionable. I had the MCS for years prior---perhaps it happens because of years of minimal treatment/understanding. A lot of the symptoms are the same/similar so at this point it's hard to track the cause if there is just one. Wish I could start out with a clean slate so I could differentiate each one, but then again with a clean slate I wouldn't want any reactions!

Thinking about it while my brain is working a little better, I'm pretty sure he accepts the MCS---the major improvements in other areas from going w/o gluten are another story. As long as he's worked with me the way he has I haven't cared what the diagnosis was to a degree. Now I've got other possibly unrelated things going on he refers me to specialists---like to have an orthotic for my shoe. I will definitely need to make sure of things being listed in my file before I get on the road so if I have to deal with other doctors I will have another doctor's opinion backing up what I say and will carry a copy of my records with me too.

I'm hoping my first foray into the wild will be sans cat---she can stay with my daughter. *fingers crossed* If I get marked improvement without the cat then I'll have to figure out a new arrangement for the cat and get a stuffed animal or something.

I did a long post on a personal hygiene thread about what I use for cleaning and washing---predominately one ingredient things. I'll see if I can find a link later. Do you all still use commercial products while wearing masks or have you found it necessary to get really basic in what you use too?

 

[Ella1]

It's possible you will find a big change without the cat. It may take several days, even if the cat has never been inside your vehicle.
I just ordered the 3M Organic Vapor/Acid Gas Cartridge/Filter 60923, P100 Respiratory Protection for my journey. This trip will test a few environments and a few safety measures, including the air cleaner and a few different masks and this 60923, as well as my comfort level in using the half face respirator. Today I'm planning an 8 hour tour boat ride (gas/oil/bilge) as well as camping in pine forests and wood smoke/barbeque. Turns out one campground does not have electricity, so will also find out if the marine battery survives a night of running the air cleaner...I've been trying to get info on the fumes of the boat, but haaven't yet. I may decide to cancel it, but what I've read about this filter, I should be safe. Today I will hook it to my E-tank and use just the mask to get an idea of whether this might possibly work.

As I said, I've been pretty isolated for a long time. I used to be active: volunteer for several organizations, plus employed full time, worked with fragranced people 8-10 hours a day 5 days a week, recovering over the weekend, though I didn't know that's what I was doing enjoyed activities and hobbies, and for the last 20 yrs, pretty much nothing. Lost friends, family, work, all, just trying to survive and recover.
As far as personal, laundry, and house hold products, I've been fragrance free (FF) for over 20 years. I don't use cosmetics, all soaps/shampoos, detergents, cleaners are FF. I used to use baking soda in laundry, but haven't been able to for the last 2-3 years. Some FF products affect me negatively so I use others. Household cleaning is pretty much vinegar or lemon juice, FF detergents, water.

I have someone spray for insects/wasps at my doors.

I am taking baby powder (talc) that does have fragrance added because I can't find FF talc any more. When parked, I'll put a ring around tires to keep ants etc from crawling up and in. I did get FF mosquito repellant.
I'm also taking borax and food grade DE for the same purpose.
I'm apprehensive about this trip.

 

[anewbiewannabe]

I can relate totally to the major life changes it necessitated since I did about the same. I noticed on some FF products they really aren't---they just use some kind of masking fragrance---so I can't use them and don't bother to try anymore. I'm able to use biokleen for laundry still---for 20 years or so. It seems like I saw some unadulterated talc someplace but it's not the greatest thing---if it shows up again I'll share a link. I wonder if corn starch would have same effect for pest deterrent since it can be substituted for other uses of talc?

Good luck on the boat trip! I love the smell of pine forests, but we don't get along so well anymore. *sigh*

You'd have to check for sensitivity, but I've rubbed fresh lemon on before for mosquito repellent with good effect---did as well as the deep woods off others were using around me. Ugh. The two most common carriers for stuff are things I react to so even if the active ingredients would be ok, I can't try them unless I make something with them that omits those carriers. A dermatologist argued with me over my one reactivity even though another doctor was the one who diagnosed it after I kept wondering why my dry skin got worse and burned using balms that work for everyone else.

There's so many variations in what people react to that it makes it hard sometimes. Similar to other allergies---different people, different allergies. It's nice to have people around to share ideas that might be beneficial to another.

I can appreciate your apprehension, but I'm betting that you have exit plans so that if something's not working you can make changes. Stinks that we have to figure out if the risk is worth it by doing the risking. I'll be wishing you a positive experience.

 

[gypsychic]

This thread has been most helpful! So many ideas & thoughts come up from reading the last few posts but I'm to tired 2 type them out now but will respond at length later.

I understand the concern Ella. Take baby steps, have redundant safety measures, do your research - all which it seems like you are doing. I admire your courage to try! Also sending positive thoughts your way.

Cheers to all

 

[Ella1]

Thanks to both of you, anewbiewannabe and gypsychic. I'm learning too. Last time I was in a pine forest was last year, about 6 hours, with no ill effects. I hope it's the same this time, but I will be in it and near it maybe about 3 days.

No. The talc in this case is an abrasive to repel and destroy insects as they creep on it. I think I read that ants will stay away from talc.  Food Grade DE will do similar work.
Talc is a mineral, made up of magnesium, silicon, and oxygen,
and Diatomaceous Earth is a mineral---silica.
I may mix talc into DE, to make it a one step application and reduce the amount of fragrance. This talc is not as smelly as a different brand I got a year ago.
Another deterrent is instant grits for population reduction. I use it at home.

IIRC, "Fragrance Free" is supposed to mean there are no fragrance chemicals added.
The word "un-scented" usually means more chemicals were added to cover the fragrances in the product.

We do the best we can.

I may try the lemon. Good tip.
That's why I started my graphs: my docs didn't believe me. My skin gets worse using coconut oil.

The only reason I feel somewhat okay with attempting this is that my daughter will get me to safety if needed. I wouldn't try it alone the first time. Reactions can be swift and intense, rendering my non-functional quickly. By that I mean, I sit here, working at breathing, and nothing else.
Even increasing P it can take hours to see enough improvement that I MIGHT be able to drive myself out of the situation.
If I can do this,  it opens a world to me.
The first leg is 400 miles from here, followed by a 7 hour boat tour. But I just talked to the tour manager. He said there really were no places on the boat that there would be no fumes and odors because of the large diesel engine and heads, that it is smelly.   Due to no medical care available and no way to escape fumes, it's not a good idea. I will probably cancel both tours for me. I know he's probably covering his assets, but it really is a big risk for me.   Not being able to get out of the situation could be life-threatening.  So, my exit plan for the fumes on the boat is, no boat!
I hope my daughter will go on at least one of the tours.  

Courageous? Thanks, but no. I'm basically a scaredy cat, been working at releasing  fear for a long time.
"Courage is not the absence of fear, but rather the assessment that something else is more important than fear."
It's important to me to make a change. I have things to paint. I love painting outdoors, on site. I can't do that in my house. I get out locally as much as I can, but want to get further away, too. A trip along the coast, in parks from here to there,  etc. It is a dream, but I will work towards it. It is scary.

I got a dog tag today at Walmart's engraving machine.
MCS-EI 989.89
SEVERE COPD
NEED ADA STAFF
The blank backside will be a good emergency reflector...

Have you read any of the ADA? If you are a "qualified person with a disability" you are protected by the ADA. You have to know if you are, and how to ask for accommodations. The ADA is written so regular people can read and understand it. Google it.
Courage does not always roar. Sometimes it is a quiet voice at the end of the day saying......"I will try again tomorrow" ~ Mary Anne Radmacher.
Thanks for the positive wishes and thoughts.
Ella

 

[gypsychic]

The I can breathe website was interesting. Thanks for the link. I might try one out. It's certainly less 'scary' looking than the 1/2 face masks and I'd feel more comfortable wearing it in public. I think I'll try the activated carbon one.

On the same site, under the resources link I found this:
http://www.nytimes.com/interactive/...20110918_OPINION_ALLERGYGOBIG.html?emc=eta1#3

I found it very relatable and hauntingly honest. For those that don't have to deal with these degrees of sensitivities, I think it's a glimpse into the life of someone who does. Maybe it'll help them understand just a little bit more. Thoughts?