Archive for the ‘Rheumatoid Arthritis’ Category

Perspective

Monday, January 19th, 2009

I called our company’s HR department last week to ask a question about maternity/disability leave payments. I finally spoke to a person, I’ll call her Mary, who could help answer my question. She pulled up my “file” on the computer and noted that I had just been out on maternity leave in 2006-2007. “Yes”, I said, “I have one son who just turned two and we’re expecting another boy in April.” I was, at that moment, feeling the little one stretch inside me and felt compelled to add, “We feel very lucky to have two little boys. They’ll only be about two and a half years apart and we know that we will be very busy, but we are very happy.” Mary responded “Oh, I know what you mean. I have one and we’ve been trying for another.” I wished her luck and another baby soon and then as if I had opened some sort of floodgate for her it all came spilling out. How they had bad been “trying for a couple of years” without a baby. How she worried that her daughter would be too far apart from her potential sibling and that they would fight. How she had gotten pregnant a year ago only to have an anomalous ultrasound. A diagnosis of a serious genetic problem. How she had felt her son move within her. How they had named him. And then how he died when she was five months pregnant. I told her that I was so sorry and that I know she must miss him very much. She thanked me for saying so, we talked a bit more, and then we hung up.

My current pregnancy has been somewhat difficult. We had an early indication of potential genetic problems, I am perpetually nauseous, I haven’t made it more than three days without throwing up, I was absolutely felled by a bout of gastroenteritis and ended up in a hospital in Bakersfield (long story) over the holidays, and I contract every time I even roll over in bed. But at this point, all indications are that we have a perfectly healthy baby boy who is likely to stay put until he is full-term. I have an smart, charming, and very energetic toddler snoring away down the hall. And I never thought I would get here.

I’ve known that I had, as those in our grandmother’s generation would say, “woman problems” since I was twelve. I actually missed a round of the SATs when I was younger because I was passed out in pain due to cramps. The problems waxed and waned throughout high school and college and I received a probable diagnosis of endometriosis. There is no cure for endometriosis but I coped with careful management strategies and painkillers until around the time Jeff and I were married. I clearly remember looking down and Jeff’s and my intertwined hands at our wedding rehearsal noticing small red bumps on mine. I brushed it off as some sort of allergic reaction to the manicure I had had earlier in the day. I started to feel progressively sicker on our honeymoon and within a month I was at the doctor with fatigue, abdominal/pelvic pain, and other troubling symptoms. I finally had a laparoscopy in January 2002 and when I woke up Jeff gave me the rundown of what the surgeon had found: significant endometrial lesions and adhesions, holes in my peritoneum where the endometriosis had “eaten” through, and the worst, “She said that we need to try to have kids before you are 30.” I was 23 years old. I KNEW I wanted children but we were really not ready so I went into overdrive. I sought out a new job with a significant pay raise. We bought a house three months after my 24th birthday and worked long hours to make it a home. I saved hundreds of dollars a week for a nest egg to support an extended maternity leave – or fertility treatments. I felt relatively good for a couple of years until 2004 when I developed, literally overnight, debilitating pain in my wrists, followed by joint pain throughout my body, extreme fatigue, and the reappearance of those mysterious red bumps on my hands. After another round of “find a decent doctor” I was diagnosed with an unspecified auto-immune disorder, likely either lupus or rheumatoid arthritis. Living in a major metropolitan area I was able to see the guy who literally wrote the book on lupus and when I talked to him about wanting to have children soon he looked at me like I was insane and told me he didn’t think that was a good idea. Regardless of the name of the disease the treatment was initially the same and I took my much hated medication dutifully to attempt to beat my disease into submission. And after a year or so, I did feel much better. I was twenty seven, not getting any younger, and so we decided to try for a baby.

The moment I saw those two pink lines was the most shocking and thrilling of my entire life. After years of believing such a thing might be impossible for me I was utterly stunned and speechless. I immediately had a feeling that it was twins. Jeff, still shocked himself, thought I was a bit nuts. I had all the typical early pregnancy symptoms: so very tired, odd food aversions and cravings, a stuffy nose (who knew about that one!), and nausea. But after a couple of weeks I suddenly wasn’t that tired anymore, my food sensitivities lightened up, and I was devastated believing we had lost the baby. A few long days later at my first ultrasound I found out why. There was one perfect little embryo with strong heartbeat and there had been a second baby, now rapidly disappearing into the ether of my uterus. That little embryo was Thomas and now I find myself, again, against some significant medical odds pregnant with another healthy boy.

Nearly three years after seeing our “vanishing twin” I find myself thinking about him (I have no way of knowing, but in my mind, he is always a he.) a little more often, wondering what kind of little person he might have been; looking at Thomas and thinking how much he seems to need a playmate to burn off his inexhaustible energy with. I find myself thinking about Mary and her son and how clear it was from her voice how much she loved him. And I find myself thinking about all of those years I spent agonizing over how my body would ever support a pregnancy and a baby. A few nights ago Thomas was having a particularly difficult time falling asleep. Jeff came out of his room exasperated and I went in to lie next to Thomas and rub his back. Rather than being annoyed, I felt quite peaceful and I thought to Thomas “I will stay with you for hours. I will be with you as long as you need me to. I am so very glad that I have your little back to rub. ” In a few short weeks I will have two little boys’ backs to rub, to nurse, to laugh with, and to watch grow up; whatever other problems we may face, that makes me feel like the luckiest woman in the world.

Rock-a-Bye

Protecting Your Assets: It’s About Much More Than Money

Saturday, October 11th, 2008

So, in keeping with the advice of my last post, I will assume that you have gone and informed yourself about the economy. And I will assume that you don’t like what you have heard and read. Now what? You didn’t cause this mess, but unless you are already living on your fully paid for self sustaining farm with some gold bullion stashed next to the squash in your root cellar, you are certainly going to be affected. The first order of business: protecting your assets. I am going to broadly lump assets into five categories:

  • Monetary Assests: savings accounts, retirement accounts, etc.
  • Property Assets: home, land
  • Community Assets: schools, libraries, parks
  • Health Assests: your and your family’s physical and mental health
  • Job/Skills Assets: your job, your education, other useful skills

And you thought I was just going to talk about money.

Monetary Assets

Savings accounts: Most of us have one (or more of these). First off, whatever you do, don’t keep more money in any one institution than is covered by the FDIC deposit limits. Now I realize, that most of us don’t nominally have $250,000 sitting in our bank account, however, there are situations where this might apply. For example, you might receive an inheritance. Or perhaps after selling your home you may have a small gap before purchasing another – even just a few days where a couple of hundred thousand dollars or more (if you’re lucky) might sit in your bank account. It would be rather unfortunate for you, if the bank happened to fail on one of those days. For more information on the current limits go to the FDIC website. Second, there have been 15 bank failures this year – expect more. I would be wary of most commercial banks. Yes, your deposits are insured, however, in the event of a failure you may have limited access to them. Furthermore, given enough failures the FDIC insurance fund will be depleted and then there will be trouble. We use a relatively small, local credit union. Credit unions are not for the profit of shareholders, therefore they generally took on much less risk than the commercial banks. As an added bonus, credit unions almost always offer better interest rates on savings accounts than a traditional bank. Finally, I think it is always a good idea to keep some cold hard cash on hand. Enough to buy a couple of weeks worth of groceries and gas. Even if the economic apocalypse never comes to pass, the next earthquake/hurricane/flood might be just around the corner.

Retirement plans: I am not going to tell you whether or not pull your money out of the stock market, although I will say I doubt it has hit bottom yet. For many young people, such as myself, there is nothing much you can do about the money in my retirement account even if you wanted too. For example, I simply am not permitted to access the money in my retirement accounts unless I retire. So we are stuck. I was joking to Jeff that I am just going to consider the tens of thousands of dollars we have lost as a sort of indirect campaign contribution for Obama since the economic crisis has clearly helped him in this election.

Property Assets

If you own a home, it is probably your most valuable asset. As such, treat it like you would a family member and keep it in good health. Take care of things such as roof repairs, leaks, termites, etc. that have the potential to become major expenses and/or render your home uninhabitable. If you have some land associated with your home, treat it as an asset as well. Land is good for much more than a manicured green lawn, you can use it as humans have for thousands of years – to grow food. So treat your soil well – don’t use pesticides/herbicides, fertilizers, etc. Build up your soil and it’s fertility through composting. If you are lucky enough to have shade and/or fruit trees maintain their health. For more information on how to turn your lawn into food check out the book: Food Not Lawns.

Community Assests

Unfortunately, as resources tighten and government appears increasingly bankrupt you can expect that many public services and institutions will be given short shrift. But remember that long before public schooling, libraries, and parks became the responsibility of the government, they were the responsibility of the people and were built up through volunteers. Become an advocate for the things that you care about. Personally, I have a great love for our library system. It provides us with books, movies, children’s music/storytime, and internet access all for free. If services do shut down or become so ill-funded that they are no longer useful remember that you can create your own. Get together with a bunch of other moms and start a music class, consider homeschooling, exchange books with friends, invite kids over to your park-like backyard.

Health Assests

Your health, and the health of your loved ones, is obviously one of the most important things to protect. That said, it is not easy in a severe economic downturn, particularly if you face the loss of your job and it’s health insurance. Now is the time to make sure you are current on your and your children’s vaccinations, go in for that dental check-up, get into therapy, and pick up that spare pair of glasses. This issue hits very close to home for me. For example, I nominally take a combination of drugs to treat my rheumatoid arthritis (RA). One of those medications, Humira, is insanely expensive. Without insurance it is $17,500 a year. Seventeen thousand five hundred dollars. Even with insurance, we pay a couple of thousand dollars a year for my medication. Needless to say, I don’t see how we would make ends meet if we lost my job and my health insurance. That said, RA is an aggressive, damaging, and potentially fatal disease. Not treating it is not an option. So I have a back-up plan. There is a cheap, generic, medication (prednisone) that I can take in fairly large doses to keep me alive and walking with a total cost of $48 a year. Despite the vast price difference I don’t rely on alone now as it has significant side effects. However, it is good to have a back-up plan. If you have a chronic health condition, mental or physical (remember that your mental health is just as important to you and your family as your physical health) it is a good idea to talk your doctor now about low-cost solutions should the need arise.

Job/Skills Assets

Job: Your job is a huge asset, particularly if it comes with insurance benefits. Now would probably be a good time to make sure that you are a “good” employee. You don’t want them to think of you first when the lay-offs come around and if you should lose your job you will want excellent references. No matter how secure you think your job is, you should also update your resume and keep it current. If you have an inkling that you may lose your job, start looking for a new one immediately. You want to beat the rush as much as possible.

Skills: Remember that you almost certainly have skills beyond your job. For example you might work in IT, but also spend your free time working on your car or motorcycle. Many hobbies can be turned into marketable skills. If it isn’t too expensive, perhaps now is a good time to polish your cooking skills with a culinary class, take an advanced carpentry workshop, or learn how to brew beer. You’ll be protecting yourself against the loss of your job and you’ll have fun in the process.

I strongly believe that the economic turmoil we see now is only the beginning of what is to come. We face not only the potential collapse of our financial system, but the (not unrelated) problems of climate change and the end of cheap, abundant energy (e.g., peak oil). Despite that, this post reminds me of how much I do have and how much I want to preserve what is good. I have a beautiful (if rather dusty and furry) house, a garden full of ever increasing amounts of food, a fantastic family, great neighbors and friends, and a good education and set of skills. That’s what is important and that is what I am working to protect. I hope that by that definition, you are all rich as well.

Go Bag Go: Hope for the Best and Plan for the Worst

Tuesday, August 12th, 2008

A couple of weeks ago I sat in a rocking chair nursing and rocking Thomas (and myself) to sleep when I suddenly awoke to a great deal more rocking than I was making. I quickly realized that we were having an earthquake and calmly walked out the hallway with Thomas to ride out the quake. It was only a moderate earthquake and we didn’t suffer any damage but I took it as a warning to update and improve our “go bags”. Our go bags are backpacks filled with the basic necessities of survival (excluding water and food which we have stored separately) for three days.

Regardless of whether or not you live in earthquake country it is a good idea for everyone to have a go bag at home and, if you work farther away than a home office, a go bag to keep at work. A well stocked go bag is particularly important if you or a member of your household has any medical conditions or food allergies that might not be able to be accommodated at a shelter. Ideally you would “shelter in place” during a disaster and our home is well stocked to do so. However, sometimes as in the case of a small scale disaster such as a gas leak or a large scale disaster such as hurricane Katrina it is just not possible to remain at home. That is where the go bag comes in. So what’s in our go bags?

In my home go bag I have enough supplies (excluding water and food) to keep me reasonably comfortable for three days. My home go bag contains:

  • A 30 day supply of my non-refrigerated prescription medication
  • A moderately sized first aid kit with an additional bottle of Tylenol arthritis strength
  • A complete change of clothing including two pairs of underwear, two pairs of socks, pants (that zip into shorts), a tank top, a long sleeved t-shirt, and a sweater
  • Comfortable walking shoes (my old athletic shoes)
  • A cosmetics bag including: shampoo (can also be used as soap), contact solution, a contact case, a toothbrush, toothpaste, a hairbrush, hairbands, lip balm, a fingernail clipper, feminine hygiene supplies, sunscreen, and a small sewing kit
  • A package of tissue
  • A extra pair of glasses
  • A flashlight + extra batteries
  • Matches
  • A map of Los Angeles County
  • A chamois towel
  • A charger for my cell phone
  • A laminated emergency card listing the phone numbers, addresses, and emails of everyone in our immediate family
  • An empty water bottle
  • $20 broken down into a roll of quarters, a five dollar bill, and five one dollar bills
  • A dust mask
  • A hand crank emergency radio
  • A pocket knife

We also have a go bag for Thomas which has a somewhat different makeup and includes:

  • Thomas’ medications (includes infant Tylenol)
  • A box of hemp milk
  • A bottle
  • A sippy cup
  • A small spoon
  • Favorite snacks (freeze dried fruit, snappea crisps)
  • A onesie
  • Long sleeved/long pants pajamas
  • Socks and shoes
  • A sun hat
  • Sunscreen
  • A blanket
  • A sling
  • 18 Diapers
  • One package of baby wipes
  • Small amusements (a notepad + crayons, stickers, two board books)

We have had go bags at home for a couple of years now, however, with the recent earthquake striking during the daytime I realized that in a significant disaster we might need to make our way home from our respective workplaces without a car or public transportation. I work only 2 miles from home, however, Jeff works 17 miles away. Certainly walkable but it would be a much more pleasant and safe walk with a few supplies. Therefore Jeff and I now each have go bags that we keep at work. Jeff’s work go bag includes:

  • A small sized first aid kit
  • Comfortable walking shoes
  • Sunscreen
  • A hat
  • A flashlight + extra batteries
  • Matches
  • A map of Los Angeles County
  • A laminated emergency card listing the phone numbers, addresses, and emails of everyone in our immediate family
  • An empty water bottle
  • 2 liters of water
  • Powdered Gatorade “singles”
  • Granola bars
  • $20 broken down into a roll of quarters, a five dollar bill, and five one dollar bills
  • A dust mask
  • An old pair of work gloves

In addition to our go bags we also have a go box (actually a cat carrier) filled with emergency supplies for our pets which includes leashes for all,disposable litter boxes, three days worth of food for each animal, disposable food/water bowls, and a blanket for each animal.

I hope we never have to use the bags, but knowing we have them ready to go brings me a small bit of peace every time the earth starts to shake.

Change of the Week: Talk A Governement Representative About An Important Issue

Friday, August 8th, 2008

Right now the California State Assembly is considering passage of a bill, SB 1713, which would ban the chemical Bisphenol A from many products in California including cans, formula containers, baby bottles and toys. As someone who suffers from a severe, incurable autoimmune disease (rheumatoid arthritis), potentially triggered by chemicals in our environment such as BPA, I am passionate about the passage of this legislation. Today I sent a letter to our state assembly member, Anthony Portantino urging him to vote YES on SB1713. Below is the text of the letter:

Dear Mr. Portantino,

Regarding SB1713…

Yesterday I received a mailer headlined “Don’t Let Sacramento Politicians Remove Products From Your Grocery Bag”. The mailer urged me to “tell you to vote No on SB1713″.

I was so troubled by the misinformation, outright lies, and scare tactics in the mailer that it had the opposite effect that it had intended. I am writing to ask you to vote YES on SB1713 and ban Bisphenol A (BPA) in California.

BPA was first developed in 1936 as a synthetic hormone. Today it is primarily used to make hard plastics (polycarbonates) such as baby bottles and to line food containers such as canned goods. Numerous studies have shown that BPA leaches from the containers into our food, exposing us to large cumulative levels of BPA throughout our lifetimes. Over 100 scientific studies have shown that BPA has adverse health effects including:

-Behavioral changes including hyperactivity, an increase in aggression, and increased susceptibility to drug addiction
-Diabetes and obesity
-Early puberty
-Down syndrome
-Reduced sperm count
-Breast and prostate cancers
-Impaired immune function
-Brain damage associated with impaired learning and memory

Canada recently (April 2008) imposed a similar ban on BPA to that being proposed by SB1713. The Canadian ban has not resulted in a dearth of affordable food and products. Instead, it has given consumers the ability to feed their families conveniently, affordably, and safely. With the passage of SB1713 California would become the first state in the nation to ban BPA in cans, formula containers, baby bottles and toys setting a precedent for the rest of the country.

I would be happy to speak with you or your office further about this issue and provide references for the studies that I mentioned above.

As a concerned mother and a scientist I urge to vote YES on SB1713. Thank you.

Please consider taking the time to write or call your state assembly member regarding this issue.  You can find out who your representative is at the California State Assembly homepage. To find out more about BPA and its adverse effects visit Environment California’s BPA page.  So very few people ever take the time to write or call about any issue that it only takes a couple of dozen people to make a difference.