Sunday, August 31, 2008

Invisible Illness Awareness Week

Just when you thought you were going to get a week off from designated weeks, along comes "National Invisible Illness Awareness Week" September 8-14. Now this is not an "official" awareness week, as in one designated by an Act of Congress, but it is being honored by many online communities and even has its own blog at . Sponsored by Rest Ministries, a large Christian organization which serves the chronically ill, the week is focused on highlighting the needs of people with chronic illness.

So-called invisible illnesses include diabetes, heart disease, lupus, chronic fatigue syndrome, fibromyalgia, and certainly MCS. The invisible illness blog has an article today listing twenty things church members can do to help people with chronic illness. A couple of the things on the list are, "Don't tell me how great I look, when I know I look lousy," and "Don't tell me that if I had enough faith or prayed hard enough my illness would go away." Another one I would add is, "Don't tell me about your Great Aunt Mable who had the same thing and cured it by waving feathers over her head every third Tuesday at 3:00 am."

Lisa Copen, who started National Invisible Chronic Illness Awareness Week in 2002, made the following statement:
"Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression."

During this week in September, twenty telephone seminars will be held on applicable topics, and guest bloggers will write articles as well. In Copen's words, "We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible."

So, the second week of September, be more aware and not so invisible.

Tuesday, August 19, 2008

Making the World Safe for Babies and Children

Okay, so I haven't been very good at keeping up with this blog this summer. It's just that I've been too busy in my Grandma role to keep up with everything else. Not that I'm complaining. I can't think of anything I'd rather do than play Grandma.

Besides spending a good portion of July with baby Jack and his parents, we had our Sara and her two boys, George and Jack, with us this past week. Of course, there have been numerous days with Cole, Max, Sterling and Morgan, and we just found out that Jill and Michael are expecting another baby the day after Christmas. Truly, my cup runneth o'er.

So, needless to say, my mind has been much on children and babies. Today I heard about a great "natural baby" website at . If you too have babies-on-the-brain, check it out for products and other information. It's more than just another retail website. There's lots of interesting baby help too. And, if anyone is close to Vancouver, BC, this website has information about a Mother's Conference being held there on October 25th. Sounds interesting.

Some other tidbits have also come across my email this week that may be of interest to anyone wanting to improve the air quality of a home or office (especially important for homes with little people). One way to improve indoor air quality is to introduce toxin-consuming plants into your environment, such as philodendron, spider plants, golden pothos, peace lilies, bamboo palms, mums, and English ivy. According to NASA research, these plants help remove formaldehyde, carbon monoxide, benzene and other toxins from the air. Of course, these plants may be poisonous if ingested, so you'll need to keep them out of reach of little hands. (We keep ours on top of tall bookcases.)

Another tip is to have a no-shoe policy in your home or office. You can't believe what kinds of things get tracked in on the bottoms of your shoes and then get left in the carpet as you walk across it (like pesticides, oil and grease, dust, etc.). Not only do these pollutants affect the air quality, they aren't too good for little hands and knees that crawl across these surfaces. If you have someone who just refuses to go unshod, a pair of shoes used only for indoor wear is a alternative solution. Just make sure he/she doesn't sneak outside in them. Personally, I prefer to go barefoot, but I do have a pair of fleece LLBean slippers I wear around the house on cold Montana winter days.

Any other suggestions?

Tuesday, August 12, 2008


I often read, and sometimes comment, on other blogs. In one recent discussion I expressed my troubles with attending church meetings due to MCS and the loss I felt. Another person commented that perhaps I was expecting church meetings (and the people at church) to fulfill too many of my needs. Perhaps my expectations were setting me up for disappointment.

I have thought about this over the past couple of weeks and have come to the conclusion that, indeed, I have expected way too much of my church community.

Before we moved to Montana, I was very involved in volunteer activities at the schools and in the community at large. I also worked part time at a retail book store and had many friends and acquaintances outside of the church setting. I went to church on Sunday and felt that my physical and spiritual needs were met, but I didn't rely on the church community to fulfill all of my needs, particularly my social and intellectual needs.

When we moved here seven years ago, our children were all adults and we worked out of our home, so I really had no place but church to meet and interact with other people. At first, as I was making new friends, this was quite sufficient. But, as time went on, I felt starved for a stirring literary discussion or someone with whom to share my political views. When I couldn't get these needs fulfilled at church, I became frustrated. Then, on top of that, I started having serious problems with chemical sensitivities at church. When people weren't willing to change their habits to accommodate my needs, I felt rejected and unloved.

The truth is not that people don't care, but that they don't really know how to meet my needs, and they can't possibly meet all my expectations. Truly, my expectations were just too great for the available resources.

This past Sunday, I was able to go to church in one of the other buildings in our area. I went expecting nothing, except to enjoy being with some of my family. There were no great stimulating conversations, and I couldn't tell you what the talks were about (I was holding a one-year-old on my lap through the service). I didn't make any new friends or have any great new spiritual experiences. However, I did enjoy being around other people and it felt good to do something on Sunday other than sit at home and read a book (my usual Sabbath activity). It isn't easy to lower one's expectations, but it does result in less frustration and anger.

Tuesday, August 5, 2008

Consumer Product Safety Commission Reform Act

The following press release was posted last week concerning the Consumer Product Safety Commission (CPSC) Reform Act, which has been passed by both houses of Congress and is now sitting on President Bush's desk awaiting his signiture to put it into law. The chemical industry lobbyests put great pressure on members of Congress to not pass this legislation, but reason won out. If you are interested, you can call the President's office at 202-456-1414 to urge him to sign this bill. It is a huge step in protecting all of us, but particularly children.

July 31, 2008
Reid: Senate Sending President A Product Safety Bill To Protect American Consumers
Washington, DC—Senate Majority Leader Harry Reid made the following statement today after the U.S. Senate passed the conference report to accompany H.R. 4040, the Consumer Product Safety Modernization Act:
“We are sending the President a strong bill that says his Administration’s lax regulation standards on children’s safety are unacceptable. This bill gives the Consumer Product Safety Commission the resources, authority and oversight it needs to protect our children from lead, dangerous toys and other unsafe products. For years now, the CPSC’s budget and staff had been slashed while 28,200 Americans die and 33.6 million are injured each year. I hope the President agrees that this is unacceptable and quickly signs this good bill into law.”
CPSC Reform Act Expands Funding for the Consumer Product Safety Commission. The bill authorizes a significant increase in funding levels for the CPSC. The bill adds more than $56 million over current levels for 5 years beginning in 2010. As part of the authorization, $25 million was directed toward establishing a public database of injuries, illness, death or risk related to consumer products.
CPSC Reform Act Bans Lead in All Children’s Products. The bill bans lead for products manufactured for children age 12 or younger.
CPSC Reform Act Requires Mandatory Toy Testing. The bill requires mandatory third party safety certification of products made for children 12 and under. Company labs would only be allowed to test products if they are certified by the CPSC, provide equal or greater consumer protection than available third party labs and are appropriately "firewalled" from other operations of the company.
CPSC Reform Act Sets Mandatory Toy Standards. The bill makes mandatory current toy safety standards promulgated by an independent standard-setting organization.
CPSC Reform Act Makes All-Terrain Vehicle (ATV) Safety Standard Mandatory. The bill requires the CPSC to adopt the voluntary ATV safety standard as a mandatory standard. The CPSC would also be required to consider strengthening additional ATV safety standards
CPSC Reform Act Establishes a Database of All Reports of Injuries, Illness, Death or Risk Related to Consumer Products. The bill requires the CPSC to establish a searchable database to include any reports of injuries, illness, death or risk related to consumer products submitted by consumers, local, state or federal government agencies, child care providers, physicians, hospitals, coroners, first responders, and the media within two years. Upon receiving a complaint, the CPSC will have 5 days to submit the complaint to the manufacturer. The manufacturer then has 10 days to respond. The complaint and manufacturers response would then be posted on the database. The CPSC would have the authority to remove or correct a complaint if it is found to be inaccurate.
CPSC Reform Act Sets a Temporary Quorum of 2 Members in Order to Allow the Commission to Conduct Business. The CPSC currently is without a quorum and cannot conduct business that requires Commission action such as a mandatory recall. The bill allows a 2-member quorum to conduct official business for a one-year period and restores the Commission to five members instead of three members to prevent future absences of a quorum.
CPSC Reform Act Streamlines the CPSC Rulemaking Process. The bill streamlines the product safety rulemaking process so that the CPSC can act more quickly in the event of a problem.

Monday, August 4, 2008

Church Revisited

Last night we decided to go visit the church building with no one in it and see if the new carpets had outgassed enough for me to contemplate attending meetings again. I also wanted to see if the new, more eco-friendly, cleaning supplies were being used. I have not been in our building since the new carpet, upholstery and countertops were installed the first part of March.

As soon as I walked in, I could smell the carpet, but it was faint, so we went looking for the new cleaning supplies. Sure enough, they are using the more eco-friendly products. They aren't the products I recommended (and found were available from the distributor), but they are certainly much better than what was being used previously. We couldn't find the new hand wipes (or any hand wipes, for that matter) that we were told were being ordered for use at the sacrament table, so maybe those haven't come in yet.

We were in the building for all of about ten or fifteen minutes, until I just had to get out due to the smell. I went right home and took an antihistamine and some extra strength Tylenol for the headache I could feel coming on. It was a little discouraging, but I am encouraged that the new cleaning products are being used. This is one of those experimental small (very small) buildings with the chapel in the middle and a hallway all the way around (which makes a great race track for toddlers during meetings) and very small classrooms. It has very poor air circulation, with little or no exchange with outside air, and the windows are never opened, so it could take a really long time for the carpet and upholstery to outgas. The other building here in Helena has even newer carpet, so attending church there is not an option either.

Fortunately, I was able to attend church one week in Virginia in an old brick building that was anything but airtight. So I guess my church attendance will be restricted to visits out of town. Sounds like a good excuse to travel to me.