Saturday, February 28, 2009

Multiple Chemical Sensitivities

Now I am by no means saying I or anyone else has this BUT in reading my book home safe home which is very outdated they mentioned something interesting.........(below) so I wondered what was out there 'today' almost 22 years later on the topic.

Quote: "Multiple chemical sensitivities (MCS) is now fairly widely known and accepted by at least par tof the medical community. A peron becomes sensitive through immune system damage caused by either a one time dangerously high level exposure or continous low level exposure such as is found in modern homes and office buildings. Once the damage is done, all sorts of low level exposures, such as to perfume or cleaning products, can cause symptoms. All sorts of symptoms are possible, including dizzines, fainting, itchy, burning eyes, runny or congested nose, dry throat, shorteness of breath, asthma, upset stomatch, diarheah, menstrual problems, extreme fatigue, insomnia, memory lapses, poor concentration, depression, and behavioral changes."

Here is what I would have to guess would be the best site for up to date info:

If anything it does seem the CF population would be at a higher risk for this and less likely to pick it up since it would most likely be 'par for the cf course' whether it showed up as athritis like or breathing like symptoms.

Interesting food for thought

Five Non Toxic Housecleaning Basics

Good Housecleaning: Five Non-Toxic, Get-the-Dirt Out Basics
Annie Berthold-Bond Issue 112, May/June 2002

My friend Rachel is pregnant with her second child. Like many pregnant women, she is distilling all of society's free-floating anxiety about exposure to toxic chemicals into nine months of serious worrying. Rachel asked me to teach her how to do nontoxic cleaning, and she was pleasantly surprised to find out how easy and effective it can be.

There are five basics that I use for nontoxic cleaning: baking soda, vinegar, a good soap or detergent, washing soda, and tea tree oil. I believe you can clean everything in the house with these items. Rachel liked the simplicity of having to learn about only five ingredients. She also felt less vulnerable the more she took charge of the number of chemicals coming into her house.
My rule of thumb about nontoxic cleaning is this: use only ingredients that have been used without harm for so many years that they are "generally regarded as safe"; otherwise they would have long since been abandoned.

Baking Soda A commonly available mineral full of many cleaning attributes, baking soda is made from soda ash and is slightly alkaline (its pH is around 8.1; 7 is neutral). It neutralizes acid-based odors in water and adsorbs odors from the air. Sprinkled on a damp sponge or cloth, baking soda can be used as a gentle, nonabrasive cleanser for kitchen countertops, sinks, bathtubs, ovens, and fiberglass. It will eliminate perspiration odors and even neutralize the smell of many chemicals if you add up to a cup per load to the laundry. It is also a useful air freshener and a fine carpet deodorizer.

Washing Soda A chemical neighbor of baking soda, washing soda (sodium carbonate) is much more strongly alkaline, with a pH around 11. It releases no harmful fumes and is far safer than a commercial solvent formula, but you should wear gloves when using it because it is caustic. Washing soda cuts grease, cleans petroleum oil, removes wax or lipstick, and neutralizes odors in the same way as baking soda. Don't use it on fiberglass, aluminum, or waxed floors, unless you intend to remove the wax. Washing soda is found in the laundry section of most supermarkets.

Vinegar Vinegar is a mainstay of old folk recipes for cleaning, and with good reason. The vim of the vinegar is that it kills bacteria, mold, and germs. It is also the opposite of baking and washing soda; it is acidic and therefore neutralizes alkaline or caustic substances. If your tap water is hard and you have trouble with mineral buildup (which looks like a corroded dirty powder), soak a cloth in vinegar and rest it on the problem area for a few hours. The acid will break down the minerals and they can be wiped away. Acids dissolve gummy buildup and eat away tarnish. I have also found vinegar particularly good for removing dirt from wood surfaces.

Heinz company spokesperson Michael Mullen references numerous studies to show that a straight 5 percent solution of vinegar kills 99 percent of bacteria, 82 percent of mold, and 80 percent of germs (viruses). Heinz's packaging cannot claim that vinegar is a disinfectant, since the company has not registered it as a pesticide with the Environmental Protection Agency (EPA); however, it seems to be common knowledge in the industry that vinegar is powerfully antibacterial. (The CBS news show 48 Hours aired a special report on tests from the Good Housekeeping Institute showing this.) Use white distilled vinegar, since apple cider vinegar can leave stains.

Soap or Detergent Many people are confused about the difference between soaps and detergents. Both are surfactants, or surface active agents, which basically means they are washing compounds that mix with grease and water. But soaps are made of materials found in nature, and detergents are synthetic (although some of the ingredients are natural); they were developed during World War II, when oils to make soap were scarce.

There is little doubt that soap is better for your health and the environment than detergents. Detergents are very toxic to fish and wildlife. Washing with soap has a big drawback, however--the minerals in water react with those in soap, leaving an insoluble film. This can turn clothes grayish, and the film can leave a residue (such as is found on shower stalls, for example). Detergents react less to minerals in water and, for all practical purposes, are the product of choice for laundry, unless you have very soft water. Those of you with hard water, which has a high mineral content, undoubtedly already know this. If you do use detergent, you can ensure the least possible damage to the environment by selecting the most biodegradable products. (See For More Information) Health food stores carry brands of detergent made with renewable materials instead of petroleum-based ingredients, and with natural essential oil fragrance and no dyes. They also sell liquid vegetable-oil soap called castile soap.

Tea Tree Oil A friend once offered me a very beautiful but musty bureau. I thought that setting the bureau in the sun for a day or two might kill the mold, but that didn't do the trick. Much to my surprise, the solution I finally discovered was easy, used all natural materials, and removed 100 percent of the musty smell.

I have found three natural ingredients that kill mold: tea tree oil (an essential oil found in most health food stores), grapefruit seed extract, and vinegar. Each has its pros and cons.

Vinegar is by far the cheapest.

Tea tree oil is expensive, but it is a broad-spectrum fungicide and seems to kill all the mold families it contacts; the problem is that it has a very strong smell, but that dissipates in a few days.

Grapefruit seed extract is also expensive but has no smell.

Mold can be dangerous to your health, even if you aren't allergic. Many people react to mold by getting tired and even depressed. Try to stay on top of moisture and mold as soon as either arises. Dry out anything that is damp, such as basements (use a dehumidifier) and carpets. Fix leaks in plumbing and roofs. Wipe up spills. Make sure water doesn't escape from shower curtains. Vigilance will pay off!

My Seven Favorite Recipes

Creamy Soft Scrubber ½ cup baking soda liquid detergent Pour the baking soda into a bowl and add enough liquid detergent to give the mixture the texture of frosting. Scoop it onto a sponge to wash surfaces. This is the perfect recipe for cleaning the bathtub, because it rinses easily and doesn't leave grit.

Window Cleaner 1/4 to 1/2 teaspoon liquid detergent 3 tablespoons vinegar 2 cups water Put all the ingredients in a spray bottle, shake it, and use as you would a commercial brand. The detergent in this recipe is important--it cuts the wax residue left by products you might have used in the past.

Oven Cleaner 1 cup or more baking soda water squirt or two of liquid detergent Sprinkle water generously over the bottom of the oven, then cover the grime with enough baking soda that the surface is totally white. Sprinkle more water over the top. Let the mixture set overnight. You can easily wipe up the grease the next morning because the grime will have loosened. When you have cleaned up the worst of the mess, dab a bit of liquid detergent or soap on a sponge and wash the remaining residue from the oven. Note: If this recipe doesn't work, you probably didn't use enough baking soda and/or water.

All-Purpose Spray Cleaner 1/2 teaspoon washing soda dab of liquid soap 2 cups hot tap water Combine the ingredients in a spray bottle and shake until the washing soda has dissolved. Apply and wipe off with a sponge or rag. Furniture Polish 1/2 teaspoon oil, such as olive (or jojoba, a liquid wax) 1/4 cup vinegar or fresh lemon juice Mix the ingredients in a glass jar. Dab a soft rag into the solution and wipe wood surfaces. Cover the glass jar and store indefinitely.

Vinegar Deodorizer Keep clean spray bottles filled with straight 5 percent vinegar in your kitchen near your cutting board and in your bathroom, and use them for cleaning. I often apply the vinegar to my cutting board before going to bed and let it set overnight. The smell of vinegar goes away within a few hours. Straight vinegar is also great for cleaning the toilet rim. Just spray it on and wipe off.

Mold Killer
1: Tea Tree Treasure 2 teaspoons tea tree oil 2 cups water Nothing natural works as well as this spray for mold and mildew. I've used it successfully on a moldy ceiling and shower curtain, and a musty bureau and rug. Tea tree oil is expensive, but a little goes a very long way. It also has a very strong odor, but that dissipates in a few days. Combine tea tree oil and water in a spray bottle, shake to blend, and apply to problem areas. Do not rinse. Leave in the bottle-it has a long shelf life.

Mold Killer 2: Citrus Seed Extract 20 drops citrus seed extract 2 cups water The advantage of using citrus seed extract instead of tea tree oil for killing mold is that it is odorless. Combine the citrus seed extract and water in a spray bottle, shake to blend, and apply to problem areas. Do not rinse. Leave in bottle-it also has a long shelf life.

Mold Killer 3: Vinegar Spray Straight vinegar reportedly kills 82 percent of mold. Pour some white distilled vinegar into a spray bottle and apply to moldy areas. Let set without rinsing, if you can put up with the smell, which will subside in a few hours.

Books Bower, Lynn Marie. The Healthy Household. Healthy House Institute, 1995. Dadd, Debra Lynn. Home Safe Home. Jeremy P. Tarcher/Putnam, 1997. Steinman, David and Samuel S. Epstein. The Safe Shopper's Bible. Macmillan, 1995.

Websites Hundreds of everyday solutions for a healthy lifestyle. Free monthly e-mails from the Children's Environmental Health Coalition, offering simple steps to keep your baby in a healthy home. Also offers the video Not Under My Roof! Protecting Your Baby from Toxins at Home with Olivia Newton-John and Kelly Preston. Shopping for the green home. This Environmental Defense website is an excellent resource for information about specific chemicals found in household products. Enter the name of a chemical in the search box, and you will be told about its toxicity and what regulatory lists it is on. Environmentally friendly, nontoxic household cleaners and products, plus information on household toxins such as chlorine. Annie Berthold-Bond is the Healthy Living content producer for and the author of a number of books, including Better Basics for the Home (Three Rivers Press, 1999) and Clean & Green (Ceres Press, 1990). She lives in Rhinebeck , New York .

Good, Clean Fun, How to Clean Your House (GREEN GUIDE)

Good, Clean Fun
How to clean your house without hurting the planet

By The Green Guide
18 Mar 2003

If you think of your home as a haven from pollution, we've got some bummer news. Levels of pollutants in indoor air can be from two to more than 100 times higher than outdoors, according to the U.S. EPA. That indoor pollution is due in large part to volatile organic compounds (VOCs) that evaporate, or "offgas," from home decorating and cleaning products.
Make your home clean and green.

So if the weather cooperates, step one for green cleaners is: Open a window and let those pollutants out! Yet even in the spring and summer, when a vase of daffodils can fill a room with a lovely natural scent, many consumers stubbornly keep using synthetic room fresheners and fragranced cleaning products that are full of VOCs and other toxic chemicals. These can make our indoor air unhealthy, provoke skin, eye, and respiratory reactions, and harm the natural environment.

Take those so-called air fresheners. According to a study published in New Scientist in 1999, in homes where aerosol sprays and air fresheners were used frequently, mothers experienced 25 percent more headaches and were 19 percent more likely to suffer from depression, and infants under six months of age had 30 percent more ear infections and 22 percent higher incidence of diarrhea.

In choosing alternatives, however, consumers need to be alert to greenwashing. "Just because a product says it's natural doesn't mean it's nontoxic," says Jeffrey Hollender, CEO of Seventh Generation, which produces genuinely eco-friendly cleaning supplies and household products. The word "natural" is undefined and unregulated by the government and can be applied to just about anything under the sun -- including plastic, which comes from naturally occurring petroleum. Because no standards exist, claims such as "nontoxic," "eco-safe," and "environmentally friendly" are also meaningless, according to Consumers Reports' Eco-labels website.Instead of being taken in by slogans, David Steinman, coauthor of The Safe Shopper's Bible, advises looking at labels for specific, eco-friendly ingredients that also perform effectively. These include grain alcohol instead of toxic butyl cellosolve as a solvent; coconut or other plant oils rather than petroleum in detergents; and plant-oil disinfectants such as eucalyptus, rosemary, or sage, rather than triclosan.

You can also mix your own cleaners, as does Annie Berthold-Bond, green living editor at and author of Clean and Green and Better Basics for the Home. According to Berthold-Bond, a few safe, simple ingredients such as plain soap, water, baking soda (sodium bicarbonate), vinegar, washing soda (sodium carbonate), lemon juice, and borax can satisfy most household cleaning needs -- and save you money at the same time.

If you're in the mood to detoxify, getting rid of germs doesn't have to mean overkill: This is your home, not a hospital. In 2000, cleaning products were responsible for nearly 10 percent of all toxic exposures reported to the U.S. poison control centers, accounting for more than 206,000 calls, over half of which concerned children under the age of six. According to Philip Dickey of the Washington Toxics Coalition, the most acutely or immediately hazardous cleaning products are corrosive drain cleaners, oven cleaners, acidic toilet-bowl cleaners, and anything containing chlorine or ammonia (which should never be combined -- see below).Read on to get the dirt on various conventional products and ingredients and their eco-friendly alternatives. With a little effort, you can make your home a truly clean haven rather than a chemical storage tank.
Dish Detergents, Laundry Detergents, and All-Purpose Cleaners


It's a wash.

Most conventional dish and laundry detergents are made from petroleum, a nonrenewable resource. Some detergents contain alkyphenol ethoxylates, which are suspected hormone disruptors that don't readily biodegrade and can threaten wildlife after they go down your drain. Ethoxylated alcohols in liquid detergents can contain carcinogenic 1,4-dioxane.The fragrances in detergents and fabric softeners can contain phthalates, chemicals that have been linked to cancer and reproductive-system harm in animal lab tests.

Fragrances may also trigger asthma and allergic reactions, with symptoms including skin and respiratory irritation, headaches, and watery eyes. Although phosphates, which choke waterways, are no longer used in most dish and laundry soaps, they can be found in dishwasher detergents. Phosphates are highly caustic and can be fatal if swallowed.Other ingredients turn dangerous when combined: Diethanolamine and triethanolamine can react with nitrites (an often undisclosed preservative) to form carcinogenic nitrosamines.


Use laundry soaps labeled "fragrance-free," advises Harvey Karp, a Los Angeles pediatrician and author of The Happiest Baby on the Block. If you want to use citrus-oil products, sniff-test a small amount from a few feet away, as these products can be irritating to allergic or sensitive individuals. Karp also advises choosing dish and laundry detergents and all-purpose cleaners that are plant-based (corn, palm kernel, or coconut oil).To remove stains from clothing, try soaking fabrics in water mixed with borax, lemon juice, hydrogen peroxide, washing soda, or white vinegar. Or, look for "non-chlorine bleach" made from sodium percarbonate or sodium perborate, available from Bio Pac, Ecover, Naturally Yours, Shaklee, or Seventh Generation.Fabric can be softened by adding one-quarter cup of baking soda to the wash cycle; this recently worked on several pairs of catalog-bought cargo pants made of a cardboard-stiff cotton that literally scraped a teenager's skin. A quarter cup of white vinegar will also soften fabric, as well as eliminate cling.Less toxic products include Ecover and Seventh Generation laundry and dish soaps; Aubrey Organics and Vermont Soapworks all-purpose household cleaners; and Bioshield and Naturally Yours dishwasher detergent.
Antibacterial Soaps and Cleansers, Bleach, Stain Removers, Disinfectants, Glass Cleaners, and Bathroom Scouring Powders (Whew!)


Popular in liquid form, antibacterial soaps are helping to promote growth of resistant bacteria, according to a 2000 World Health Organization report.Chlorine bleach, a common disinfectant frequently found in scouring powders and cleaning solutions, is highly caustic, meaning it can burn skin and eyes -- plus it can be fatal if swallowed. When it travels from your drain into the natural world, it can create organochlorines, which are suspected carcinogens as well as reproductive, neurological, and immune-system toxins. And be warned: Bleach (also known as sodium hypochlorite and sodium hydroxide) should never be mixed with any product containing ammonia or quaternium compounds. Doing so creates highly toxic chlorine gas. Many conventional scouring powders and cleaning solutions contain chlorine bleach.


Instead of using antibacterial soap, Karp recommends thorough hand-washing (about two minutes' worth) with plain soap and warm water. To disinfect bathroom or kitchen surfaces, try Earth Power's EPA-registered herbal disinfectant or Seventh Generation sanitizers. White vinegar helps kill bacteria, mold, and viruses, according to Berthold-Bond, who uses it on everything from kitchen surfaces to toilet seats. However, the only foolproof way to kill food-borne pathogens such as salmonella or E coli is to use hot, soapy water to wash all cutting boards, dishes, knives, and surfaces that have touched raw meat or eggs.

Oops, you missed a spot!

Scrubbing sinks, tubs, and countertops with a paste of baking soda and water effectively removes dirt rings and some stains; if that doesn't work, try a paste of washing soda and water, and be sure to wear gloves. Commercial non-chlorine bleach products include Bon Ami scouring powder and cream cleansers from Earth Friendly, Ecover, and Seventh Generation.For cleaning windows, fill your own spray bottle with water and either one-quarter cup white vinegar or one tablespoon lemon juice to cut grease. Safer commercial glass cleaners are made by BioShield, Earth Friendly, Naturally Yours, and Seventh Generation.
Drain, Oven, and Toilet-Bowl Cleaners


The corrosive ingredients in these products can severely irritate eyes, skin, and the respiratory tract, and can be fatal if swallowed. Chemical drain cleaners are among the most dangerous of all cleaning products, containing sodium hydroxide and sodium hypochlorite (bleach) that can permanently burn eyes and skin. In oven cleaners, lye and sodium hydroxide can burn skin, eyes, and the respiratory tract.


For drains, a plunger "snake" plumbing tool should first be used to bring up as much of the clog as possible, giving cleaning products room to work, or perhaps eliminating the need for them entirely. Earth Friendly and Naturally Yours drain cleaners use enzymes, rather than caustic chemicals, to dissolve obstructions. Don't forget to prevent future blockage with inexpensive metal or plastic drain screens, available at most home-improvement or hardware stores.To clean oven surfaces, coat them in a paste of water and baking or washing soda and let stand overnight, then scrub off the paste while wearing gloves. Among commercial products, EnviroSafety's plant-based multi-purpose cleaner works well. Or you can use the non-chlorine scouring powders and creams listed above. To prevent future buildup, line the oven floor with aluminum foil and wipe oven walls and ceiling clean after each use. For toilets, forget the fancy stuff: Again, use the simple, non-chlorine scouring powders and creams listed above, or try AFM SafeChoice or Ecover toilet cleaners.

Furniture and Metal Polishes


These are corrosive and may cause eye, skin, or respiratory tract irritation. They can also contain nerve-damaging petroleum distillates or formaldehyde, a carcinogen.


Polish furniture with a mixture of one teaspoon olive oil and one-half cup white vinegar, or look for solvent-free products that use mineral or plant oils, such as Earth Friendly furniture polish or Hope's lemon oil. As your grandmother probably knows, silver can be kept clean with toothpaste. Copper can be polished using a cloth dipped in white vinegar or lemon juice with salt dissolved in it; just rinse with water when you're done. You can shine your brass with a paste made from one teaspoon salt, one cup white vinegar, and one cup flour. Or, use Kleen King copper and stainless steel cleaner, Twinkle copper and silver polishes, or Hope's brass and silver polishes.

Air Fresheners and Other Perfumed Products


Aerosol propellants contain flammable and nerve-damaging ingredients as well as tiny particles that can lodge in your lungs. Fragrances of all kinds can provoke allergic and asthmatic reactions.


If the air outside is clean, open your windows and ventilate the natural way. An open box of baking soda removes odors. (If you're feeling Martha Stewart-ish, you can decant it from the box into a pretty bowl.) Cedar blocks or sachets of dried flowers and herbs provide gentle scents -- but avoid any potpourri that lists unspecified "fragrance" on the label; this could mean synthetic chemicals, including phthalates. Look for products scented with essential plant oils, such as lemon, verbena, or lavender.Finally, we cannot stress enough that you should avoid aerosol sprays in any product, as they disperse ingredients through the air and make them easy to inhale. Even nontoxic ingredients can irritate eyes, noses, and lungs. Carelessly shaken powders can also spread through the air and cause irritation.
Now Get to It!
Most of the eco-friendly products mentioned above can be found in supermarkets or natural-food, hardware, and home-improvement stores -- or online. For more complete info and further tips, see the Green Guide website, and check out the green-cleaning advice in Grist's book, Wake Up and Smell the Planet.And remember: When it comes to green cleaning, less is definitely more!

Air Fresheners Linked to Lung Damage

Given this most recent bout inflammation for me happened after moth ball exposure I am thinking ALL those totes (in basement) are going outside on big clothes lines this summer for a WEEK and then paying someone to take them to a laundry mat to clean them all--what a mistake!

Air Fresheners Linked to Lung Damage
Chemical in Air Fresheners, Toilet Deodorizers, Mothballs Cuts Lung Function

By Daniel J. DeNoonWebMD Health News
Reviewed by Louise Chang, MD

July 27, 2006 -- A chemical found in air fresheners, toilet deodorizers, and mothballs -- and in the blood of 96% of Americans -- may harm the lungs.

The finding comes from a National Institutes of Health study that measured lung function and blood levels of 11 household chemicals in 953 U.S. adults. All 11 chemicals are volatile organic compounds -- chemicals given off as gasses from common household products.
Only one was linked to lung damage: 1,4-dichlorobenzene or 1,4-DCB. You know what it smells like -- mothballs. It's most often used in room deodorizers, urinal and toilet-bowl blocks, and, yes, mothballs.

The 10% of people with the highest blood levels of 1,4-DCB did 4% worse in a test of lung function than the 10% of people with the lowest blood levels of the chemical, found Stephanie J. London, MD, and colleagues at the National Institute of Environmental Health Sciences (NIEHS).

The researchers called this a "modest reduction" in lung function. But they warn it could be serious for people who suffer asthmaasthma or other lung problems. And the reduced lung function test linked to 1,4-DCB is also a risk factor for heart diseaseheart disease, strokestroke, lung cancerlung cancer, and death from any cause.
"Even a small reduction in lung function may indicate some harm to the lungs," London said, in a news release.

A 2005 study found that the risk of asthma in children age 6 months to 3 years goes up as their home 1,4-DCB exposure increases."This research suggests that 1,4-DCB may exacerbate respiratory diseases," said NIEHS director David A. Schwartz, MD, in a news release.
In some homes and public restrooms, the CDC has detected 1,4-DCB levels that exceed the Environmental Protection Agency's minimal risk limit for long-term exposure.
London suggests that people can limit their exposure to 1,4-DCB by reducing their use of products containing the chemical. But that may not be entirely successful.

A 1987 study by the Environmental Protection Agency found 1,4-DCB in the air of 80% of U.S. homes surveyed. Only a third of these homes used products containing the chemical.
The new findings appear in the August issue of Environmental Health Perspectives.

More Green Changes--sort of

Well I am looking for some hair items without alot perfumes etc, seems if they are closest to my face and I sleep breathing them in this makes sense. But I am not committed to it until I find something that will work. That being said this summer I got some GREAT deals on my haircare items and stocked up. Well I have had them all in my bathroom closet and the closet does smell when I open it up. Now that I am doing my Neil-Med rinse every day and that is where I keep the stuff I figured a good part-way change would be to continue to use the products while I look for alternatives but to STORE them in the basement so I wasnt being exposed to them en-mass for no reason.

Here is what I HAD in my closet (just 2 of 4 shelves LOL)................

Here is what I removed from my closet!

Now if I can find an alternative I have to decide if I want to sell this all at a garage sale in the spring or donate it to womens shelter. Women's shelter I can get full MSRP off my taxes and do a good deed but it is so much I am afraid it would cause a red flag (IRS wise)--since I already have alot other stuff ready to go there too. Or I could just donate it and not worry about the credit I suppose though lowering my taxes is a big happy spot! Garage sale would be interesting, especially since I have a ton of cleaners to decide same thing about. Who knows maybe that is against law to sell so much stuff en mass LOL. Last year I did it with a table of HBA I had gotten for free and made over $50--the stuff went like hot cakes!

Green Cleaning Experiment

Ok so my first week on the green cleaning experiment. Total cost experiment $5.

Here is what I have tried so far:
two large bottles hydrogen peroxide with spray tops inserted $2
two large spray bottles 50% distilled white vinegar/water $2 for HUGE bottle
two small boxes baking soda $1 for 2 boxes

My goal is to clean as many things as simply as I can and then branch out to 'specialized' products where I cant fill the niche or find a simple way. I would prefer to buy as little 'fancy' products as possible for the economical as well as convenience reasons.

I will start documenting what I try, what works, what doesn't. Perhaps one thing will work most of the time but I will need some 'strong cleaner' once in a while I can have someone else do, we shall see.

Today I did the bathroom downstairs and upstairs, not a deep clean just overall regular clean up.

I used vinegar water on the mirror-A+

sprayed toilet, washer, dryer and cabinet with hydrogen peroxide-A

sprinkled baking soda in sink and used scratch pad-B+ (required more rinsing than say ajax but worked very well)

followed up bathroom sink fixture with vinegar water due to streaky look after baking soda-A+

sprayed the floor with hydrogen peroxide, I tend to hand clean bathroom floors because I just dont think they get cleaned well otherwise. So I sprayed it, let it sit while doing the other stuff and then since this wasnt a 'scrub day' I used a paper towel to go around all baseboards behind toilet getting any dust balls, lint, hair etc, threw that away then used a small towel to wipe the tile down. The floor dried fine, looks good, no dirt/hair, germies are gone, I think I am happy with that. Since peroxide will kill germies (have to look into this further)and has no smell it was my first choice to try, we shall see what works best in long run.

I tackled the tub after letting baking soda sit in it and using green scratchy pad. It was wonderful as I could clean and not shoo DD out of the room for fear of her breathing in ajax. I could scrub more vigorously because I was not trying to hold my own breath! It worked well for 95% of everything. The only thing I would like is too look into something I can spray on shower walls for a 'soak' and something that has some soap scum cutting ability for that path directly under the soap holder. Overall B+.

I did this cleaning while wearing my breathe healthy mask-C Now I give it a see but only because of my comfort. I am not used to wearing a mask and I breathe funny when wearing them, I expect this to be A once I get 'used' to it.

OVERALL=A+++ it looks nice and clean and it was CHEAP and most importantly it didnt hurt my breathing ONE BIT. Used to be after I cleaned bathroom I took out trash because of all the paper towels and other contaminated smelly stuff I had used, then I would leave bathroom fan on forever and try not to use it. There was NO smell! Hooray. I think we have a winner.

PS wear gloves when using peroxide!!! Trust me I forgot!

I will try to post the more 'fancy' ideas once I find them LOL!

Our budget Dave Ramsey

Someone asked us about our debt snowball, budget plan etc. If you have read total money makeover this will make sense, if you haven't go get it!

It takes 3 months minimum to get a budget that even comes close to working so dont beat yourselves up. Our budget has evolved over time we have had a huge variance on our amoutns we set over just the past year. We have decided we are DONE with debt and we are as lean as we can get. We now value being free and clear more than our comforts and frivalities that we can add back later.

So the only frivalities we have in our budget is my gym membership which for health reasons is a necessity. We do not feel constrained or stressed, we are actually happier than we have ever been. We started out with alot other funds and as summer approaches we may re-visit having a tiny vacation fund and as the year progresses we will start a small christmas fund ---keeping in mind we got super intense in the fall08 and our christmas budget was $200 total.

We have cut out: xm, more expensive internet (we still have to have high speed for our work), home phone, all extras on the cell phones (Dh's work pays for most and we end up paying like $20 to have mine added on), and cable.

Envelope System All Cash Basis ($ listed per week):

$110 Household (this includes all food, household consumables, HBA, cleaners, lightbulbs toilet paper what have you) It was too much hassle to have it separated out IMO. The 10 actually goes to savings for our 'meat' fund and I put 100 in envelope.

When we started getting serious DH would work overtime and take side jobs. I was kind of let down since I am salary so I started looking in to ways to trim our household budget. I found I could cut out equivalent of a part time job from my budget by couponing among other things. So my budget for this is pretty low. I am working on getting it lower in the spring I had planned to be down to $85 and $10 but I have recently went green on cleaning products and some health beauty aids so that ups the cost a bit so for now I am just shooting to maintain this level.

People assume because I coupon that we must eat like crap, we dont! We eat almost exclusively whole grain, lots fruits veggies, I buy beef and hog from a farmer and chicken some organic some not when it goes on sale I buy ALOT. I used to buy organic milk but now I have found some cheaper ones that are BGH free so that is 'good enough' for now. I have slowly found subs for our budget busters. I cook, I dont use ton convenience foods, we rarely eat out. Anything like 'stopping for coffee' comes out of our spending money. I stockpile when things are cheap, plan weeks meals around veggies that are on sale when I can, we have learned to adapt to more bananas and apples and less raspberries and melons etc. I use dried beans, buy rice in bulk that isnt instant etc etc etc.

I also try to buy any 'kitchen items' out of this for instance I just had to replace my george foreman grill ( a must for me), a large pan, a large measuring bowl, and a collander. I went lean on grocery budget planning around mostly things I had and buying bare bones and managed to scrape buying these items out of grocery budget but if I couldnt have done it we would have used 'home improvement' budget.

$30 'spending money' We each get $15, this used to be significantly higher but we got more intense and cut it down from $30. I pack DH's lunch and coffee each morning and he has almost stopped going out to eat etc. For first time ever I see him saving his money when he wants something its amazing! I always pack my lunch and dont buy sodas etc so the $15 isnt as hard for me though I used to augment my clothing or entertainment money with spending money I would save up so that has been an adjustment.

$30 Clothes (separated by me, dh, DD) This also included at times diapers, wipes though alot times I bought that with grocery money. It also for DD pretty much includes everything for her whether its a new toy, shoes, etc. Yes this clothing budget is hard for me!!!! And I did get $400 last fall before I lowered my clothing money as I needed gym shoes, bras, etc so the $10 week is purely maintenance for me right now.

$10 Entertainment (we rarely do eating out but when we do sometimes I go from grocery if I have the extra, other times from entertainment. Depends on reason why too if I just dont feel like cooking then probably groceries but if we are 'going out' then entertainment --if that makes sense). We have gotten creative with things to do for entertainment that are cheap or free, we visit family more too. We may double this at summer time since there is more to do etc not sure yet.

$20 Charity. This is a source disagreement for DH and I. I would like to do more charity DH does not. Deal is once we are debt free I can tithe and do my charity soooooo right now I still do give a signficant amount to charity via my grocery fund to woman's shelter and food bank when I get good deals via my couponing hobby.

$5 Gifts. Last year we had alot weddings etc and I had to up this. Not expecting that this year. How $5 you ask? For instance, my birthday was in Jan we did $20 spending cap but DH had been saving his 'blow money' and added to this. We got our niece and nephew that live in town a small birthday gift. We just dont do alot gifts. For xmas I made alot 'food' gifts for family, we spent $100 on charity and included what we had done in lieu of gifts in the letter. DH and I did not exchange gifts this year but we had a blast buying and giving the gifts to charity, I didnt feel 'down' at all. DD got $50 spent on her from us and a significant amount for grandparents, I used that $50 and bought her a little tikes kitchen off of craisglist and clearance shopped like crazy--she actually got ALOT stuff too much with all grandparents added in there!

For house and car repairs we have a $50 fund that we keep for small this and that items. DH does most all of our repairs so we can keep it low. We used to do $50 week for each when we had some things we had to have worked on. Now if we have a large expense coming up (we had to buy new tires) we will budget for it and save additional. Or this week we had to buy part for exhaust fan in bathroom so whatever DH used out of the $50 we will bump back up to the $50 next week. This summer we have to buy gutters (not a want long story LOL) so we are figuring out how much that will cost and will start setting it aside bit by bit.

Ok that is probably more explanation than you wanted but that is where we are at and yes it is GAZELLE but it is great! Goodness this took forever to explain I hope someone finds it useful and you're not all thinking I'm nuts LOL!

Nicole & Jared
debt free date: Apr2010 or SOONER

Wednesday, February 25, 2009

interesting asthma medication classes

was doing some background site link searching for a friends whos hubby has managed to live with asmtha most his adult life but done a horrid job maintaining it so she wants to learn more. I found this useful reference tool though I need to actually more thoroughly read it and make sure its 100% factual.

Monday, February 23, 2009

Organizing & Updates

I am trying to go through some of my old docs to get my references in line in my blog, I will do it here and there, its a work in progress, I hope to soon add some info in regards to green cleaners and my experiments with them.

I have been challenged and gladly accepted to investigate the irritants in my home. I have the book home safe home and have gotten started already! Here are all the cleaners I removed from my bathrooms and kitchen YIKES!! Yes that entire tote is full and that doesnt include removing dish soap or laundry products that will take an act of well...something big for DH to get rid of his fabric softener and such, one step at a time! The purple tote on top is all kids soap and shampoos!

I also removed all the HBA for Lillian, that has long since bothered me. Why are kids products so perfumed they smell good on their own. I stopped using them for a bit and then slid back into it. I kept her scent free good lotion and will get a new bath wash/hair wash for her. She smells just fine on her own!
Since I do couponing I stockpile when its on sale so the pictured items dont count all the bulk stuff in basement LOL. That is mostly the 'smellies' that I used like glade plug ins. I stopped using previously on my own, initially I could only use the 'clean' smells like clean linen but not much else, then I found them irritating all of the sudden so I chucked them all in the basement and plan to sell them off in my spring garage sale I have a HUGE tote of them as they were a 'money maker' for a long while so why not buy them LOL--well now I do have a reason they are irritating, literally!

Calculating Maximum Heart Rate

Finding Your Maximum Heart Rate and CalculatingYour Heart Rate Zones
Heart Rate Calculator

Credit going to:
The Heart Rate Calculator above calculates heart rate based on the Karvonen Formula. See Zones below for a description of the above.

Enter your Age, Resting Heart Rate and Maximum Heart Rate (If Known) then click Calculate
Top of Form
Resting Heart Rate
Maximum Heart Rate
Zone 1
Zone 2
Zone 3
Zone 4
VO2 Max(90-100%)
Zone 5

Karvonen Formula

A very effective method of calculating your zones is by the Karvonen Formula. This formula takes into account your resting heart rate (RHR). Knowing your resting heart rate helps you to determine your Heart Rate Reserve (HRR) or working Heart Rate. Heart Rate Reserve (HRR) or working Heart Rate the difference between the Maximum Heart Rate (MHR) and Resting Heatt Rate (RHR). The greater the difference of your MHR and your RHR the greater your HHR or WHR. This is important because this tells you how great your heart rate intensities can be.

The best way to measure your resting heart rate (RHR) is when you first wake up in the morning and before you get out of bed. Simply count your pulse for 15 seconds beginning on the zero count and multiply by 4. You can do this for 5 days and then average the results. This is your resting heart rate. Keep in mind that lack of proper rest, stress and lack of proper nutrition, and medication can influence your RHR. One sign of over-training is an elevated RHR. By becoming aware of your RHR you can more closely become in-tuned with with how your body is reacting to different stimulus.

You will also notice that using the Karvonen Formula the percentages of MHR will be higher. This is because this method indicates more closely your actual VO2 Max. VO2 Max or Maximal Oxygen Consumption is the total capacity to consume oxygen at the cellular level. This represents the total maximum aerobic capacity of the muscle cells.
MHR - RHR = _____ x % = _____ + RHR = Karvonen Formula

For Example: MHR = 180. RHR = 60
180 - 60 = 120 x 70% = 84 + 60 = 144 bpm

180 - 60 =
120 x 50% = 60 + 60 (RHR) =
120 bpm (50%)
180 - 60 =
120 x 60% = 72 + 60 (RHR) =
132 bpm (60%)
180 - 60 =
120 x 70% = 84 + 60 (RHR) =
144 bpm (70%)
180 - 60 =
120 x 80% = 96 + 60 (RHR) =
156 bpm (80%)
180 - 60 =
120 x 90% = 108 + 60 (RHR) =
168 bpm (90%)

Once you know your percentages of max heart rate then you can exercise according to your goals and fitness capacity in the following heart rate zones.

Zone 1 (50 - 60% of MHR) - The lowest level you can exercise in and still increase fitness levels. For beginners or people who have not exercised for a long period of time. This zone can be for just improving your overall health. It can also be a good recovery zone for people who are over-training and need to take a break. This mode is also good for people who want to lose weight as the main source of fuel used by the body is fat stores.

Zone 2 (60 - 70% of MHR) - This is the zone where the heart begins to benefit. Training in this zone will begin improve your hearts ability to pump blood and improve the muscle cells ability to utilize oxygen. In this zone stored body fat is the primary source of energy utilized hence this zone is referred to as the weight management zone. This is a good zone for long slow distance exercise as the body becomes more efficient at feeding the working muscles more efficiently especially with fat as the main fuel source.

Zone 3 (70 - 80% of MHR) - This zone is the most effective for overall cardiovascular fitness and is often called the "aerobic zone" or "target heart rate zone". This is the optimal zone to workout in to increase your cardio-respitory capacity or the bodies ability to transport oxygenated blood to the muscle cells and carbon dioxide away from the cells. After a while you will be able to cover more distance during workouts in less time. Your body will burn less glucose and more stored fat as fuel thereby working more efficiently. This zone is also effective for increasing overall muscle strength.

Zone 4 (80 - 90% of MHR)(85-90%= Anaerobic Threshold) - this level is where you cross over from aerobic training to anaerobic training which is called the anaerobic threshold or AT. This is the point where the body cannot effectively remove lactic Acid from the working muscles quickly enough. Lactic Acid is a by product of glycogen consumption by the working muscles. This zone is primarily for people who want to increase their performance levels. You would characterize this zone as hard. During this zone your muscles are tired, your breathing is heavy and your fatigued. The benefit of training in this zone is you can increase your bodies ability to tolerate and deal with lactic acid for a longer period of time as the enzymes in your muscles responsible for anaerobic metabolism are increased. For competitors it is good to know your anaerobic threshold as many fit athletes can compete at or about their anaerobic threshold.
Zone 5 (90 - 100% of MHR)(VO2 Max) - You will only be able to train in this zone for short periods of time. You should not train at this level unless you are very fit. In this zone lactic acid develops very quickly as you are operating with oxygen debt to the muscles The value of training in this zone is you can increase your fast twitch muscle fibers which increase speed. You will not be able to stay at this level very long and should be used in intervals or sprinting work at the track.

My Huff Cough Technique

I will add to this once I find the really good description of the two kinds of huffing I perform, I ran across the explanation somewhere and I think I saved a copy of it. Anyway I read the bit below 1-7 in a letter written by Dr.Warwicl to Amy who has a great blog and I extracted this bit for my personal reference.

Whenver I find my self lapsing I come back to remind myself. I do this followed by huffing and repeat. It has been very effective for me. The other thing I do is remind myself to huff throughout the day, like certain triggers for instance if I walk in to go to the bathroom I huff, driving down road I try to huff a few times, etc so its kind of an automatic response and reminds me through the day. This idea was also mentioned somewhere in a Warwick correspondence or his bell curve letter, I cant remember which.

I guess I do the positive pressure breathign of small breaths in until I feel I will explode followed by two varying forms of traditional huffing and then repeat the breathe holding scenario again. I repeat until dry or exhausted LOL.

1. To prepare the lungs and airways for the huff coughing technique, you must first expel all the stale air in your lungs and airways. Begin by slowing down your breathing. Take slow gentle breaths, ending with one slow exhalation lasting three to four seconds.
2. Inhale slowly using your diaphragm. This is called diaphragmatic breathing or "breathing with your belly". This inhalation should be a slow comfortable breath; do not overinflate your lungs.
3. After inhaling a breath slowly, hold it for 3 seconds. This is done to control your breathing and prepare for an effective huff cough.
4. Tilt your chin up slightly and use your stomach muscles to make a series of three rapid exhalations with the airway open, making a "ha, ha, ha" sound. This helps to open the epiglottis in your throat and better allow the expulsion of the mucus in your airways.
5. Gain control of your breathing again by taking a couple slow breaths.
6. Repeat the huff coughing technique until the mucus has reached the back of your throat.

It wasn’t enough that his patients actively cough up their sputum. He wanted a deeper, better cough, and later, in his office, Warwick made another patient practice his cough. The patient stretched his arms upward, yawned, pinched his nose, bent down as far as he could, let the pressure build up, and then, straightening, blasted everything out.

Finding An Accredited Center

Finding an accredited center in the US

Checking Up on How that center is doing

Webcasts regarding care centers and more important CF topics

Common Values in FVC Tests

Shucks unfortunately this doesnt show up nearly as well in this as it does in word. I have a ton of articles and links on my computer that are helpful, I want to start organizing them so I figured I'd do it here.

Explanation of common test values in FVC Tests

Forced Vital Capacity
This is the total amount of air that you can forcibly blow out after full inspiration, measured in liters.

Forced Expiratory Volume in 1 Second
This is the amount of air that you can forcibly blow out in one second, measured in litres. Along with FVC it is considered one of the primary indicators of lung function.

This is the ratio of FEV 1 to FVC. In healthy adults this should be approximately 75 - 80%.

Peak Expiratory Flow
This is the speed of the air moving out of your lungs at the beginning of the expiration, measured in liters per second.

FEF 25-75% or 25-50%
Forced Expiratory Flow 25-75% or 25-50%
This is the average flow (or speed) of air coming out of the lung during the middle portion of the expiration (also sometimes referred to as the MMEF, for maximal mid-expiratory flow).

FIF 25-75% or 25-50%
Forced Inspiratory Flow 25%-75% or 25%-50%
This is similar to FEF 25%-75% or 25%-50% except the measurement is taken during inspiration.

Forced Expiratory Time
This measures the length of the expiration in seconds.

Slow Vital capacity
Tidal Volume
Maximum Voluntary Ventilation
Note that functional residual capacity (FRC) cannot be measured via spirometry, but it can be measured with a plethysmograph.

Results are usually given in both raw data (liters, liters per second) and percent predicted - the test result as a percent of the "predicted values" for the patients of similar characteristics (height, age, sex, and sometimes race and weight). The interpretation of the results can vary depending on the physician and the source of the predicted values. Generally speaking, results nearest to 100% predicted are the most normal, and results over 80% are often considered normal. However, review by a doctor is necessary for accurate diagnosis of any individual situation.

Sunday, February 22, 2009

Reading Update

Well the reading is great, so far I am adding to the list faster than I am reading LOL but the book I really want to need next is in the mail so I am waiting a couple more days before next book.

123 Magic
When Bad Things happen to Good People - Kuhner
Scientist in the Crib--Science meets how babies brains work--this just interests me
Happiest Toddler on the Block

Next Up:
Love Dare
Home Safe Home (alternatives to toxic laden household products)

On Docket in No particular Order (problem being once I get on a 'subject' I find more and more I want to read on it so my guess is the religion/marriage books will take over for a bit)

Skinny Bitch in the Kitchen (wholistic eating not what you think)
Power Spoken Word
Power Spoken Tongue
Sacred Marriage
Butekyo Breathing Shut your Mouth
The surrendered Wife
Marriage Book-Gary Neumans
"Better' - Atu Guande
Some sort History Book - (perhaps Steve Ambrose?)
Woman Power - Schlessinger
Priceless - Ramsey
Proper Care and Feeding Marriage - Schlessinger
5 Love Languages - Gray
Millionaire Next Door - Stanley
Power Praying Wife - Omartin
QBQ - Miller
Purpose Driven Life - Warren
Dare Discipline - Dobson
Raising Girls - Dobson
Guerilla Marketing - Levinson more for DH maybe I will get him it on tape or I might read it

Saturday, February 21, 2009

Inflammation Banter

I have had two awesome convos with others have issues similar in nature to mine, I definately want to capture these so I can go back and reflect later.

Laura Montana girl

I can soooo relate to what you are saying. I often feel the tight wheezy feeling even though my pft's are not down that bad, but it always turns into infection if i don't treat it quickly. I also culture ABPA, and my doc is in the process of getting me on xolair. Anyway... that's not really my point...... My point is that the ONLY thing that helps me when I start having the wheezy's is pred, and even though I despise the side effects (moon face, irrationality, sleeplessness, jitters, screaming at the dog for reasons he has completely no control over...ect.ect.ect) It is really the only thing that helps with the wheezing, not even my breathing tratments will do the trick. My docs, both the ones at my old clinic and the one I am seeing now prescribe prednisone when I start exhibiting these symptoms. I know that pred can mask the syptoms if you are actually getting an infection, but for me, many times a couple weeks on pred will help with the wheezing, and i will not develop an infection. However if I do nothing the wheezy's almost ALWAYS land me in the hossy with a flare. I would say on average I am usually on pred at least twice a year, but many times it is more often. I am currently taking pred, and have been doing so since dec. I haven't found anything that really helps with the side effects, except I was thinking if maybe they could ease me into the pred the side effects might be less. I've noticed that after a couple days my body kinda adjusts and I don't feel so irritable, and the tears don't flow as freely, so I'm thinking I will ask to be put on a smaller dose and ease my way up to the big dose and the ween myself back down (don't know if this will work or not, but hey it's better than insta-crazy Laura) I also try to take it as early in the am as possible, to kinda counter act the sleeplessness, but still there are times when i need an ambien when I'm on steroids. I know one of the side effects of long term steroid use is thinning of the bones, so I have to have DEXA scans yearly to check my bone density, but that's all I can think of at this moment........... Hope this helps!!! BTW does the xolair work for you? OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.OK big DUH on my part!!! Another side effect of long term steroid use is, of course steroid induced diabetes...... don't really know how that one slipped my mind, considering prednisone is probably the leading reason I now wear an insulin pump.

Laura - THANK YOU! Funny my symptoms come on differently than yours but I can relate to exactly what you are saying I get back pain, followed by a pressure around lower lobes (where I have scarring on outer peripheries that would be most likely to 'touch' sac when inflammed), then intermittent pleural pains that will last a brief second and then increase in frequency and length, tiredness, then lack of sputum movement then I will get a day or so where I get really junky mucous and then a bleed. Pretty much verbatim I can follow that pattern same as PMS or any other bodily 'rhythm'. I never really wheeze but I do start getting short of breath like going up stiars whihc is not my norm and I start getting a excercise reactive cough which for a daily excerciser SUCKS! I had a lady ask me if I was contagious a bit ago. All well. On the diabetes ugh, my family is rampant with it---whomever says there is no link to carrier symptoms I call BS if they did a study on my family I am 100% positive they could prove it. Anywya I digress. So both my sisters are type 1 and I have been trending towards diabetes world since I was first tested at 12/13. Right now I am able to counter problems by eating high protein/complex carbs but we shall see and thank you for the reminder. Also, interesting that you have ABPA, did you mean you culture aspergillus? I do not culture asp but I do have ABPA and the xolair HAS been wonderful for me, I will not go without it now. You can see my blog, a side of cf for my journey with xolair. I HIGHLY recommend it especially given the symptoms you describe.


Originally posted by: Nightwriter Yes, Yes, Yes, Nicole. This is my story also. You are soooo lucky that you have doctors who recognize this. You are on this site far longer than I am, so that you may have read some of my posts. This is ALL I talk about. So your theories are going to help you so much! Thank you!

I will go back and search under your name as time allows but if you have a blog or a summary it would be most appreciated. I tend to be a very educated, pro-active, aggressive patient known for getting my way LOL and I am sooo happy that i have changed clinics last year. I went in to them saying 'this is my first feb with you guys and this is what will happen' and it worked!

I wish that I had found my doctor years ago who treats the inflammation just like you are talking about. She said that it really was too bad, because I sustained so much permanent lung damage (also bronchiectasis) that could have been avoided.

I went 21 years without being diagnosed after which I diagnosed myself and still got referred to a shrink and NOONE will ever treat me like that again so if I get to where someone is not taking MY knowledge of MY body serious I am OUT OF THERE! I can totally relate and you are right I am fortunate to have gotten fed up and transferred. So this new doctor: it helped that my bronch last year was clear, clear, clear the doc said he saw less mucous than any average Joe until he got to the lowest lobes he could and then he found some but they showed me the salt water mucous cocktail it was very light in color and well pink too of course since Ihad had a bleed but I think that convinced him also he took pictures and everything looked more bright pink/red that I think it was supposed to. He was surprised though that there was not 'massive inflammation' nothign striking and reportedly less than an average CF'er but I always follow a weird pattern and never fit the mold. I am ALWAYS the square peg medically speaking. Oddly enough this weird 'inflammation issue' I had last year that made me pursue a new clinic got to the point where for whatever reason after the second round of antibiotics when I could tell I still had something infl going on I got completely non productive like I have never been in my LIFE, then bled shortly after, which after that was was when he did the bronch.

When I first went to my doctor, she came up with a plan to reduce inflammation. I remember getting a cortisone shot and a very brief course (maybe 10 days of oral steroids) to get me started. I had to also reduce the inflammation in my nose (I was 100% blocked on one side and I didn't know) by using nasal washes and nasal sprays. The dripping down is a big source. Then I had to get rid of carpet, add a quality air filter and vacuum, remove fragrances, etc. I was tested for asthma and allergies. Put on antihistimines (I saw you take Xolair).

I have recently stopped wearing perfume, gotten breathe healhty mask for cleaning, dusting, hair spray use etc, I have been on xolair and allergy shots for 2 years. I switched from zyrtec (which is drying) to allegra and have a few more sinus headaches but find mucous movement easier. I could NOT have done allegra before getting allergies under control I just got too severe headaches and after taking EVERYTHIGN zyrtec worked best. We do have two dogs which I am allergic to but once my current serum vial is out for dogs that vial will be made 10x stronger and I will work up to it so that should help too (there is new data last year showing they could increase serum level on dogs). My DH tries to keep dogs bathed regularly and we have 3 beds we wash, air outside, store and rotate to keep them manageable. We have all hard wood and tile so that really helps. I love our dogs but I have talked to him about once they are old and gone getting something a bit more allergy friendly, he hates small dogs but perhaps a labradoodle LOL but I digress. Other things I have done is slowly switched to using alot cleaners to vinegar, baking soda, and bleach--this is a work in progress. As the stuff I have now runs out I am goign to look into less scented bath body products etc as well. I also am trying to arrange for my sister to come over and do some stuff that bothers me and for DH to take over ajax duties like tub scrubbing etc when other things just arent cutting it. I dont have a huge amount sinus issues, especially given extent my allergies, I dont culture anythign and nothing is blocked but I have notbeen checked by an ENT in years so probably should get an update. I do rinses when I am sick or feel the need. Now that my allergies are under control I have little to no dripping issues but the sinus's do act up with every pressure or season change. We will be in teh house we are in right now (which isnt bad but basemeent gets damp--hubby sprays bleach when that happens and was built in 1878) for a few more years but the next house is going to be built or gutted and have some VERY specific things to make it a breathing heaven!

I went from severe hemopytsis, and constant IV's, including inhaled Tobra in addition to always feeling sick to fairly normal. In the beginning, I was still sick every few months (sometimes with bleeding, fever, bad cough) but used Tobi and was fine. The illnesses started getting farther and farther apart. I couldn't believe it. My baseline FEV1 was 37%. Within 2 years it hit the low 50's, enough to go back to work and live a "normal" life gain.

I am sorry to hear you had to get that ill to get someone to listen to you. My baseline FEV1 did increase significantly when I started being ubber compliant, excercising, treating my allergies, and using xolair. The fact that when you take a steroid, you get better proves there is inflammation at work like you said. Especially when you see IV's didn't do the trick. My doctor tells me that short term steroids are okay. I take inhaled steroids every day, and if I'm sick and not getting better, I get a low dose shot. I don't know what meds you take and if you want I will share with you what I do. In addition to taking appropropriate meds and mucus clearance, I do take a number of anti inflammatory supplements. You can do a search under my name and find them. Always check with your doctors because what I do may not be right for you.

I take: allegra (most effective non drying on market) singulair (why not treat every potential allergen avenue available) zithromax (again with teh macrolide and inflamation benefits a good idea) prevacid 2/day (recently discovered acid reflux was irritating my lungs and causing inflammation, my reflux seems to have increased from occasionally needing once a day to always needing 2x/day) advair HFA 230/21 (changed from discus with new doc and higher strength this helped, old doc thought I should wean off of advair completely since I was treating allergies and ggetting xolair WHAT ever I refused) Nasacort (most effective for me and I have tried them ALL of course in winter my sinuses bleed but doesnt seem to matter which one I take that happens) birth control (my bleeding and inflammation also appear tied to my hormone levels, long story, this is an experiment)
Xopenex (I do this or 3-4 puffs albuterol before my treatments but am going to ask to switch to xopenex inhaler too)
Pulmozyme (2 vials once a day, for someone with high FEV1's studies have showed twice daily dosing beneficial, most clinics dont rx this way I requested it at old clinic and does great by me and in no way appears tied to my bleeds, It is supposed to be one vial 2x a day but I have found the other way more effective for me not to mention time efficient)
TOBI (I do month on month off not true 28 days, thinking about changing but again I do better alot times with HTS months than TOBI months.

Any time I am not doing TOBI I do just the xopenex and pulmozyme in the morning and then HTS at night)

Supplements: 1000mg vitamin c 2x/day,
Magnesium mg? tue/thur/sat and every day on abx (this is to replace the mg antibiotics leach from your system),
Calcium 500mg 2x day (previously had osteopenia but now am +1 instead -1 so no more!)
gut flora supllement (varying kinds and dedication to taking them)
B complex (cant hurt right?)

I would like to take more supplements and am looking into what vitamin levels macro micro trace I can and want to have run to help spur this on. The reason I am not more into supplements is because I just weaned my daughter this summer and I am planning to get pregnant again this year so I am very cautious. I believe in educated experimentation on myself but not my child(ren).

So I love your theories. If you do anything in your life to remove triggers it will add to your progress. Remember, in addition to actual allegies, there are irritants and chemical sensitivities that raise the inflammation which cause exacerbations. Most of the time, after an exposure, and subsequent symptoms (increased mucus, cough, fever and/or bleeding) I can treat the inflammation with my doctor's guidance, and I can get better without antibiotics. If I can't get the mucus out (such as being restricted in coughing because of bleeding), then it can turn into infection.

THanks! I addressed the triggers and my attempts at reducing them above. Let me konw any additional suggestions that are not TOO extreme, I do like to keep a life balance in perspective as well. Well scratch that tell me everything and I will decide what I think will fit in my life budget etc. So I konw taking steroids could allow an infetion to get a strong foot hold have you found problems when goign on abx after takign steroids?

I did have an exposure which I believe kicked this months process into high gear. I had clothes for DD stored in basement in tubs with moth balls well we had brought them up and I asked him to wash them. I had never used real moth balls before. When I got home he had opened them and had them in piles to wash and the whole HOUSE smelled horrid horrid horrid it was really bad even though he was already washing them. He immediately took the others out on back porch and continued washing repeatedly the ones in teh washer but that was also a day of a torrential down pour and our basement got wet so he also overdid it on the bleach (trying to be a sweetie and keep me safe) and so the two together did me in and I got some pain that night, a tiny spot blood next morning which I thougth was from my sinuses, and then the next day was when I got streaks blood for sure from my lungs.

I'm very interested in hearing how you progress.[/Q]

I will keep you posted, thanks!

Friday, February 20, 2009

Investigating Inflammatory Issues

Kk so here is as brief as possible story.

Every feb like clockwork I get same symptoms which to me feel inflammatory related not infection, dont get me wrong sometimes I get infections brewing but not nearly as often as I feel I am having inflammation issues. I get back pain, tightness, intermittent pleurisy, etc. I will go in to my old clinic and they do PFT's that come out really good, showing slight reduction generally starting in small airways. I would tell them I AM getting sick, sure as heck show back up normally to the ER (why hemoptysis only happens after hours and on weekends is beyone me)2-3 weeks later with hemoptysis.

Despite not feeling I have an infection the answer was always there must be infetion in there SOMEWHERE. Ok sometimes I buy this but not all the time. I had one time JUST finished IV's and it happened anyway and they were baffled. Another time they had just seen me, I was clear as a bell and it happened.

Last year I had this happen and after two courses IV's, 5 meds, over 3 months I was not better the pleurisy got SEVERE the bleeding re-occured and I transferred to a new clinic that specializes in adults.

After ruling out all other factors they decided, especially based on what they saw in my bronch that it had to be inflammation based (what I had been saying all along but they not knowing my history or wanting to overlook anything were being precautionary with tons blood test, MRI, CT, Xrays, cultures, bronch etc).

I did 3 weeks steroids (2 weeks @40mg) and one week taper and sure enough after appt FEV were good but not all way back, two months later after all had calmed down etc I was back to having best numbers ever 103%FEV1 and 98% small airways. The FEV I was afriad I had lost and I hadnt EVERY seen my small airways so good when in conjunction with a good FEV1 plus my FVC was up too 111 which was a record. I was thrilled.

Now fast forward to this feb, last week I feel myself following typical pattern and start getting very slight blood streaks in sputum on friday for like 2 hours. Call nurse, tell her I was exposed to something irritating on wed (moth balls ugh) and hve been feeling tight we decide to monitor over weekend. Called monday said nope its not going away and went in this thursday told them the whole sheband about my theory on inflammation vs infection. Get this THEY AGREE.

Today's report FVC 111
FEV1 100 (down 3%)
FEV25-75% 88 (down 10%)

Yes, they had noted in my chart reaction to steroids was good, they had previously eliminated all other avenues and they decided I should start on steroids for 2 weeks. I am THRILLED! I hate steroids and I of course may need IV's anyway, I may get an infection anyway, but at least htey are willing to listen and think outside the box. I am especially concerned about getting sick while on steroids considering its 'going around' badly where I live.

My doc said he has seen a couple patients who seem to have these problems that are inflammatory in nature more often then infection. I culture PA, and achromabacter and have ABPA which I treat with xolair and is in 'remission state' I also have moderate bronchiectasis.

So this is a new adventure for me to explore this avenue. I am trying to figure out a way to do the steroids without driving DH crazy or gaining 10lbs since I have been trying hard and have LOST 10lbs and was shooting for another 10lbs. I am hopeful this will work, I am hopeful I will be able to avoid my feb IV's but I am trying not to get my hopes up. Just to make sure they dont get too up my lungs decided to give me mroe blood streaks today )(&*X^&)(#WE))!!!! but I did feel well this morning, ran two miles, and then this afternoon got some good stuff up which I hadnt been able to for a few days (another sign I always get). So my hope is now that the airways are opening up I will move some stuff that was stuck and this will be accounting for the blood. Unfortunately no breathing treatments tonight.

Ok I am off to bed, glad I can release this here because even DH just doesnt understand how huge this is potentially for me. I think we need to have a talk about a number of CF related issues. He tries so hard but I am jsut not sure how best ot explain some things or tell him waht I want/need during these times.

ok off to bed for real---steroids allowing!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper

15Dec2008 FEV1 103% FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt 152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77

Friday, February 6, 2009

Groundhog Day Resolutions

Saw this idea on another blog and liked it, groundhog day resolutions means I will make the goals on 1/1 then check back on them on 2/2 3/3 etc. Running abit late here but...

My FYI Plan:
Up my workout routine to 5 days a week
on track, have been doing this with 50-65 weekdays and then 1.5 on weekend 1x with a missed day here or there during the week and sundays off but reserved as a 'recoup' day for slacking

Start jogging again with a goal of getting to 3 miles 2-3 days a week (with my Knees permission)
up to 2.25 but had a knee issue earlier in the week so taking a week off

Loose around ~20 pounds, more a size/look/feel issue but that's probably about max I'd want
9lbs down

Be evaluated for Tiger-2
Hubby and I decided this is not right for us right now, multiple reasons including: I am really doing well with my new HTS routine plus I feel the 3x day will be overwhelming and we are most likely trying for #2 this spring.

Do more huffing throughout the day
not started yet

start doing more HTS between now and when I can no longer (if I do tiger-2)
packed a portable neb and will start trying to do one on the way home from work, did TOBI on time tonight so up late doing HTS now while vesting

Start doing a BS monitoring 2x month or so
not started yet

FLUSH MY PORT ON SCHEDULE (I am horrible about this)
Oh my how long has it been *cringes*

Find a more efficient & compliant way to wash/sanitize my nebs
bought a pasta pat for microwave and loveeee it but need to get some bottled water so I can boil, 1/3 the way there!

Determine a new peak flow range
nope, printed the sheet, does that count?

bought some breathe right masks for cleaning, dusting, etc

bought allergen bedding and pillows!

started eliminating alot scented products from cleaning/beauty regimen

Wednesday, February 4, 2009


why is what I want to do have to be in conflict with what I think I SHOULD do?

I dont WANT to do tiger-2, I WANT to get pregnant and ahve a second child--like yesterday. But I need to be an adult and make sure DH and I are on the same page and want to make the same decision, the right decision, for the RIGHT reasons.

I think inflammation is as big if not a bigger deal for me than infection for so many reasons
CFF needs it; I qualify, its part of my duty to my fellow cf'ers
Even 5% would in effect 'cancel out' a future bad year or two's lung loss = longer life
would be healthier when pregnant
if I have a bad health year might be best not to have another anyway
more time to accomplish some feats at work before decreasing my productivity
more time to pay off debt snowball and ensure financial security before expanding family\
more time to get in better shape

time committment, I am alreads stretched so thin in alot ways
postponing our family planning, increasing spacing between kids
perhaps decide too late or too unhealthy to have another child
missing work juggling appointments etc

when you write it all down it looks like I should definately do TIGER-2, thing is they havent called me back so I keep thinking its a 'sign' I know I should just suck it up and call them today, maybe they hit a blip maybe they forgot I dont know.

Tuesday, February 3, 2009

Lung health For My Improvement

So on my part of improving my lungs this year so far I have.....

bought allergen free bedding covers and pillows and installed them. It is hard to tell if its doing anything since I have had a severe allergic reaction (to my allergy shots) and been on steroids since LOL but I have faith it will make a difference!

Bought two breathe healthy masks and even tried wearing them while cleaning--once (its only been a week)

upped my excercise regimen, here is where I am at:

mon/wed/fri - jog 2 miles, walk rest 30 minutes, 20 free weight strength training
thur-variety class (bosu, stability ball, kick boxing)
sat-I have been trying to keep house up more so I dont feel pressure to cook/clean on Lillians nap and have instead been trying to get to the gym

So far this is a nice schedule for me but I cant always make it, this week I have conflicts sadly on tue and thur-booohooo but I am trying.

I have stopped using my portable neb for non-sanctioned treatments and get up earlier the months I am on TOBI--boooo

more to follow