Saturday, December 31, 2011

And Then I Went to the Mall...

Earlier this week, I did the after Christmas returning, which seems to be just as big a thing as the before Christmas shopping. I started at Sears because the sweat suit I was returning had been purchased there. What I didn't realize was that my brother had gone to Hagerstown to shop and not to Winchester, which meant that the person behind the counter was going to have to figure out how to process a return for an item which that particular store doesn't carry.

I always feel sympathy for people that work in retail. I know they see multitudes of unpleasant, stressed, angry people who want to blame them for everything that isn't working in their lives. So I try to be pleasant and laid back and not let my anxiety about being in hell at the mall show through when I get up to the counter.

There was a good line of people in the returns aisle and one woman on the cash register. She obviously had not been working there long and was clearly very anxious. I remember from working retail myself that returns were difficult and that was way before the days of computerized checkout. When I got up to the front of the line and handed her my returns, she totally blanked on what she was supposed to do. She had to call in a manager to help her.

Here's where it got interesting for me, because all of a sudden I saw the dynamic from the office where I worked for a year. I was the stressed out employee who couldn't remember what I was supposed to do and the manager who jumped in to help the poor cashier was the office manager who was in charge of me. It was like looking in a mirror.

The cashier was desperate to learn what she was supposed to do so that the next time this kind of return occurred, she wouldn't have to call in the manager. The manager was clearly frustrated, irritated, and not willing to show the woman what she needed to do.

In other words, the manager was not "teaching the woman to fish." She was simply handing her a fish and walking away.

The manager stepped in, her very presence forcing the cashier behind her while she hit keys and buttons and processed my return and handed me my refund. The cashier was trying to watch and remember what she was doing and the manager was clearly not wanting to show her. Wow. How familiar was that? She was trying desperately to learn the job and the person in charge of her didn't want her to know how to do it.

When I worked in that office from 2009 to 2010, I did everything I possibly could to help in whatever way was needed. And I really tried to learn how to do things "their way" (including being walked over to the filing cabinet to be shown exactly how far to push the lock in).  But, I could not seem to retain anything I was told when it came to dealing with the public aspect of my job. I had the technical part down pat, but my poor, addled, short-term memory simply could not process instructions. Then there was the fact that if I offered to do something, I was brushed aside immediately while the office manager did it. She not only wouldn't teach me how, she wouldn't let me even try or watch while she did it.

I look back on that job as a learning experience, but I don't think I learned whatever it was they were trying to teach me. What I learned is that if you have a control freak for a boss (and I had more than one), you are not going to be able to learn the job. Between my own memory problems and the fact that she felt threatened by my presence (for reasons I still have yet to fathom), I was there for over a year and I never learned how to do most of the things they needed me to do when she wasn't there.

My counselor tells me I now have post traumatic stress disorder from my experiences in that office and I don't doubt her. I am still unable to drive down the street on which the office is located without having a panic attack that feels like I should be having an EKG immediately. The fact was that I was never respected as a person in that job and, because of that, my anxiety got so far out of hand (like the woman at Sears last week) that they began to hate me pretty quickly.

It was only a matter of time and by September of 2010, I was already planning on when I would tell them I was leaving. I realized that the good things about the job (it got me out of the house, I enjoyed the field, etc.) were far outweighed by the fact that I was so stressed that I carried a box in the backseat of my car in case I decided in one dramatic moment that I needed to clean out my desk and go home. Surely this was a sign that it was not a place I should be working, but I just could not see that. I wanted to make it work until I was ready to let it go.

And being a nice person (as I like to think I am), I wanted to give them plenty of time to find someone to replace me. I also thought that the extra income would be a good thing to have for the holidays, so I figured I would give them a lot of notice after Christmas so that they would have time to find someone who could handle the job without the attending anxiety I simply could not control.

The sad thing was, they didn't value the work I did or the effort I was putting in that was becoming more and more desperate as time went on. I can see myself at that job and I pity that woman because of how incredibly anxious and terrified she was of doing something wrong. If I could go back and tell myself one thing, it would be that it was not a good idea to try to go back to work in the "real world."

I know now that the combination of personalities simply was not a good one. But I do wonder if the same thing would happen to me in a job where I was treated with simple respect, taught the things I needed to know, and had allowances made for the disability with my mental illness and memory problems instead of irritation and frustration. And whether working for someone who wasn't such a control freak would have made my working life bearable and, even, enjoyable.

The saddest part? The people I worked for were in the mental health field. And I felt like I could not tell them I had a mental illness because they would most certainly not have wanted me there. And because of my bipolar disorder, they very quickly surmised that they didn't want me there. They just didn't exactly know why because I could not summon the courage to tell them. (There's that stigma again.)

That year caused me such intense pain, anxiety, and depression that my therapist has recommended that I not try it again. There's a reason for the fact that social security agreed I am disabled by my bipolar disorder. Up until 2010, I always thought that I could at some point just pretend that I didn't have it and go back to my former self-sufficient self. Instead, I spent a year practicing learned helplessness and losing whatever self esteem I still had.

I felt really bad for that poor cashier at Sears, because she has no idea what she is doing wrong. And the fact is, she isn't doing anything wrong. It's simply that no one is willing to train her decently or do do anything to allay her anxiety in any way. Which is probably making her working life a living hell.

There's no moral here. Simply a flashback that comes with PTSD from a "learning' experience.

Wednesday, December 28, 2011

Check Me Out All Writin' and Stuff!

Today you can find me over at Off The Deep End, writing about handmade Christmas gifts and such.

Since I had a fairly traumatic trip into the lunchtime shopping district of downtown Winchester, including a trip to (shudder) the mall (or as I like to refer to it, hell), I will just kindly ask you to wander over to my article over at OTDE and take another couple of my anti-anxiety meds. Maybe with some wine and benadryl.

Good thing tomorrow is out to the movies with a friend. After the trauma of returning things the week after Christmas, I need it!

Tuesday, December 27, 2011

My Christmas Challenge to Myself

So this year we spent a boatload of money making our own children very happy. I am not immune to the Christmas "wants" and my husband made me very happy by buying me this wonderful new Mac Book Air that I am typing this blog post on. I've always loved the gifting and receiving during the Christmas season.

One of the things that was on my wish list this year was a dollhouse kit. When I was growing up, my parents bought what they could afford in the way of a dollhouse for me and what I remember is an aluminum structure with some plastic furniture and dolls. It worked fine for me then. But, after I got a look at The Bloggess' haunted dollhouse that she has been working on for 10 years (Jenny Lawson's Haunted Dollhouse), I turned pea green with envy and started obsessing about building a haunted dollhouse of my very own. I even commented on her post, asking how on earth she had put the thing together and she responded, very kindly I might add, that it had taken her a year to build the actual house and she's been scouring miniature sites and hobby stores, etc. ever since. She made a lot of the actual things that are in the house herself, such as the teeny little books that are everywhere, and there are about a million references to various horror films and books. It's totally awesome.

So, of course, I wanted one. But then I thought, "What am I going to do with this thing once I build it?" I could keep adding stuff to it. I could get my mom to make little curtains and bedspreads. I could make it a haunted dollhouse. Or I could just make it a really cool dollhouse that is furnished the way I would really like to furnish my own home - kind of like Kathleen Kelly's New York City apartment in "You've Got Mail." I drool over her furnishings every time I watch that movie.

But I got to thinking, as I saw the avarice of my own spoiled children and the "I want, I want, I want" attitudes. Not to mention my own "I want it" attitude. How did I get this spoiled and why have I passed it along to my children? I don't know the answer to that, except to say that maybe I'm a lot selfish deep down. If I want it, I buy it and, as my husband says, "We are bleeding from a thousand cuts" as I add to the "stuff" that we already have. I have done nothing to work towards that minimalist lifestyle I so admire. Nor have I done much in the way of convincing my children to give back to their fellow man.

As I thought more and more about the dollhouse, I began to think about how much joy it would bring to someone. Maybe a child who wouldn't otherwise get a Christmas gift. Maybe a sick child. Maybe...oh maybe I could build it and donate it to the local pediatric cancer ward at our hospital. And then I started getting excited. Because who deserves a really cool dollhouse if not the sick kids at the local hospital?

I waivered back and forth - I could ask the nurses to select one particular little girl and donate it to her family anonymously. Or I could just donate it to the cancer ward for all of the children to play with it.

Of course, there are two questions here. One, will I be able to part with it once I finish it? The answer to that is yes, because I have decided that if this one is successful, I will build another one the next year and donate it to someone else. And so on. Maybe one day, I will build one for myself. Or maybe this one will be the test and then I will build another one after I have some building experience under my belt.

Which brings me to the second question. Can I actually build it? After opening the box as if it was going to explode, I pulled the instruction manual out. Oh boy. What have I gotten myself into? This is no race track that I would put together in an hour to put under the Christmas tree. It's not plastic parts. It's real wood and it requires gluing, sanding, painting, leveling, measuring, staining...and that's assuming I can understand the instruction themselves, which appear to be written in a foreign language. I see an English word or two in there, but the rest all seems like, well, Sanskrit.

This morning, there was an article in our local paper about a 98 year old woman who died recently and left the dollhouse she had built to the local Discovery Museum. She wanted to share all of her creativity with the kids in Winchester. When I saw that dollhouse and the amazing things she had made for it, I thought, "There has to be a way I can do this without it being a total disaster. If I can learn to cook, I can learn to do this."

So, after all the Christmas decorations are put away and I make my first run to the hobby store for the right kind of glue and whatever else I need (anyone know what "light spackle" is?), I will empty the box out onto our dining room table and see if I can figure out how to build this thing. And if it turns out, I will solicit donations of handmade items to put into it, along with furnishings and such.

Hopefully, it will be done by next December and I will have figured out who is going to receive it. And I also hope it will be something that someone would want to receive.

I'm a smart, college educated person with a bachelor's degree and 30 years of sewing experience. But building - that's something else. I am going into this with a positive attitude and I will post pictures along the way. Oh, and cover it at night so the cats don't think all those little pieces are cat toys. (I may want to look into some rubbermaid containers!)

Wednesday, December 21, 2011

Merry Christmas to All!

I've been writing some fairly serious stuff this week about the autism-vaccine litigation and I hope that you will read and share my three part article on how the case went.

However, I wanted to lighten the mood just a bit by sharing some pet photos. If you are a "facebook" friend, then you've probably already seen them. If so, enjoy again. If not, just enjoy!


Ho Ho Ho from Jackson

Kylie, who is WAY too cool for Christmas dress up!

Since my children are teenagers and much too blase to have their photo taken for a yearly Christmas picture and because this year there wasn't a lot to celebrate (although the fact that we are together here as a family is always a blessing!), I am sharing some of my portraits of my animals. 

It occurs to me that the wonderful camera that Justin bought me for my birthday might be the start of a new hobby.

Here's hoping that you have a wonderful Christmas and a Happy New Year. And here's also hoping that the cure for cancer comes in 2012 while there is still time for those I love who are suffering.

The Fizzle in the Autism Vaccine Litigation - The End

(I apologize for the posts being out of order. Blogger was not cooperating. You can read parts one and two below. This is the final installment of the three part series on the vaccine litigation.)

Here are the vaccine facts.

Joey received:

12/10/98 Hepatitis B

01/05/99 Hepatitis B

02/11/99 DTaP/DTP/DT; Hib; Polio

04/27/99 DTap/DTP/DT; Hib; Polio

06/09/99 Hepatitis B; DTaP/DTP/DT; Hib

(That's 11 vaccinations containing thimerosol in his first six months, if you're keeping track. If you remember, the Merck internal memorandum said that 8 thimerosol containing vaccines within the first six months of life would put 87 times the Swedish daily allowance of mercury for a baby weighing 12 pounds.)

02/08/00 Chicken Pox (Varicella), MMR
05/17/00 DTaP/DTP/DT; Hib; Polio
01/03/03 DTaP/DTP/DT; Polio; MMR
10/03/09 Influenza
07/31/09 Tdap

21 vaccinations by the age of 11. The only one that was optional was the influenza vaccine in 2009. For those of you who don't already know, the flu shot they offer still contains thimerosol. Being aware of this, the 09 flu vaccine Joey received was the flu mist, which does not contain thimerosol. By this time, I was so leery of putting any more vaccinations into my youngest son's body that I turned down every optional vaccine I was offered. I had to have the Tdap done in order for him to be able to attend middle school. Now we are done with the federally mandated vaccines he must receive for him to go to school. If I said I wasn't relieved, I would be lying.

Another tidbit of information. Thimerosol was ordered to be removed from all childhood vaccines by 1998. However, supplies of the preservative containing vaccines were sitting on the doctors' shelves and continued to be used until 2000. So, any vaccines your child received prior to 2000 most likely contained thimerosol. It has been removed and is no longer used today. So, if you had worries about the mercury preservative, as long as you don't have the flu shot given to your child, he or she will not have thimerosol injected into their bodies. If you want to have them vaccinated against the flu, I highly recommend you have the flu mist, which does not contain the mercury preservative and is a safe alternative.

So, the story has ended. Except that it hasn't. My son still has autism and we still do not know what caused it and whether the drug companies are at fault. We will probably never know. All we can do now is work with Joey on a day to day basis, in conjunction with an absolutely fantastic team of teachers and autism specialists through our local school system. Joey has thrived in this environment. He is mainstreamed (with a co-teacher in his core classes for extra help with focus) into seventh grade, he is in the advanced math class (having gotten a perfect score on his standardized math test last year), and he is on the honor roll. His teachers love him. The other kids seem to love him. And bullying, so far, has not been an issue. Because of the heightened awareness of what autism is in the school system, I am hopeful that the other students will continue to be understanding of Joey's "quirks." And I have nothing but hope that he will go to college and become a successful, independent adult. Or he may live with us, continuing to need assistance with daily living skills. Either way, I am fine with who he is and love him more than life itself.

I didn't want to really end the story here. Below are the last pieces of correspondence between me and the law firm in Kentucky who handled our case. I have left out the names of the attorneys out of respect for their privacy.

Excerpt from my email to attorney upon receiving attorneys' fee check for endorsement:

"It's amazing how the government works, isn't it? Amazingly awful. They need to do the research and present TRUE findings so that we can make our own decisions on the vaccination issue...

...The problem I  have with the whole thing is that the government forces us to inject our children with multiple vaccines or they are not allowed into the public schools. Then, if there is an injury, they have a kangaroo court made up of their own medical experts, paid for by the big pharmaceutical companies who profit from adding vaccine after vaccine. I have turned down every one that I possibly could that was not required by law and was very concerned about the DTaP I had to get for Joey before he could go into middle school, not knowing if the vaccines are safe or not...

The doctors always got very defensive when I would ask questions and swore that the vaccines are safe. I think there's a lot of evidence out there that for some children, they aren't safe, but it's getting buried."

And then I received this incredibly kind, handwritten letter from the managing partner of the law firm.

"Dear Chelle,

I wanted to respond to your heartfelt letter and let you know that I share your pain and frustration. I have a twenty year old daughter who is autistic and there is no question - to me - that her vaccines caused her autism. As you indicated, we have proof that the link to thimerosol was covered up. We just never could get a judge to agree.

As I am sure you can imagine, our firm has spent a much greater amount of time and resources on Joey's claim than the $2,000 we were finally awarded. This is also true for the few other cases we have handled. I can't comment on the bigger firms and bigger amounts of cases, but my guess is that the same is true for them. I just don't know.

On a personal level I, like you, have spent the last 18 years of my life trying to get answers. I am always glad to see a fellow parent keeping that conversation alive!"

And then I knew exactly why they took our case.

The Fizzle in the Autism Vaccine Litigation - Part 1

On June 19, 2002, an attorney in Florida filed our claim against the Vaccine Injury Compensation Program ("VICP"). We hoped to have experts who would investigate whether the MMR vaccine (measles, mumps, and rubella) and, in particular, thimerosol, the preservative which was used in (and subsequently removed from) most vaccines when Joey received his shots at 14 months, was the direct cause of his autism.

Nine years later, we still do not know whether the vaccines caused or triggered Joey's autism.

Because the approximately 5,300 claims that were filed in the VICP were "tried" by three special masters appointed by the government, which in turn is paid vast sums of money by the insurance and pharmaceutical companies, we will never know. Because all vaccine injury claims must be filed in VICP (in order to protect the health insurance companies, pharmaceutical companies and the doctors who administer the vaccines from frivolous claims and humongous jury awards), there is no trial, no judge, and no jury. The petitioners (us) are not given a chance to investigate the government's documents because the government decides what our attorneys are allowed to see and what they aren't. And then the special masters appointed by the government (remember, financed by the insurance and pharmaceutical companies - no conflict of interest there) decides whether there is a link.

As a concession to the "rights" of the victims of injury from vaccines, the government has allowed the petitioners' attorneys to file for legal fees, which means our lawyers were able to be paid for some of their work. Nine years after our case began and thousands of pages of medical records and documents filed later, our attorneys received just over $2,000. What an incentive to keep working, right?

They were greatly restricted in what they are allowed to see and what they were allowed to present. They were never allowed access to all of the documentation from the vaccine companies or the studies that were done regarding whether there is a link between vaccines and autism. Which means they were fighting our fight with both hands tied behind their backs.

The litigation limped along. In August of 2005, our attorney wrote to tell us that some decisions had been made as to discovery and the government had provided approximately 180,000 pages of documentation, most of which related to product license applications (completely irrelevant to our claim, but still had to be waded through). The attorneys continued to try to get study results and information on new research studies which were being conducted at George Washington University. They also were attempting to get "outcome" data relating to a 2003 study which had followed children who had been exposed to thimerosol, but the government continued to stonewall our attorneys' efforts and they never got a look at any of those documents.

In a letter dated August 9, 2005, we received a letter from our attorney which stated, in part,

" appears the government is playing "hide the ball" with the VSD (Vaccine Safety Datalink) data. The CDC no longer maintains the VSD, and instead pays millions of dollars per year to a third-party contractor to maintain the database; the VSD, therefore, is not longer in the "possession or control" of the CDC, and is not discoverable from the government...The VSD is now managed by "America's Health Insurance Plans," the national trade association for the HMOs! AHIP, in turn claims that it never "sees, touches, stores, or has anything to do with the actual data itself."

You can see why things were going slowly. Not to mention why nothing resembling real information ever had to be produced - the health insurance companies managed the database! The government had our attorneys chasing their tails.It had been three and a half years and we were no closer to an answer or a trial. Plus, we were still waiting on important scientific studies to be completed and published. It is my understanding that most of the children involved in this proceeding were around Joey's age. Of course, it would take years of following these children to determine scientifically whether there is or is not a link between the MMR vaccine, thimerosol, and autism. We waited, along with thousands of other desperate parents, to find out if our son had been damaged by the government mandated vaccine program.

Remember that we continued to seek treatment for Joey which was not covered by insurance while this suit limped through the government's kangaroo court. That was a whole other fight that was finally won (recently) and health insurance companies are now required by law to provide coverage for autism treatments. Unfortunately, Joey is now 13 and much too old for those particular treatments to work. Fortunately, we got treatment through the school system and out of our own pockets and Joey is now extremely high functioning, mainstreamed and on the honor roll. More about that later...

Stay tuned for part two of this story. It's way too long for me to do in one post.

Tuesday, December 20, 2011

The Fizzle in the Autism Vaccine Litigation - Part 2

In a February 6, 2007 letter from our attorney in Florida, we found out that after a year of argument and debate, the special masters decided to hold a series of hearings on each of the three various potential causes of vaccine related autism. They directed the petitioners' attorneys (us) to designate "test cases" that were representative of the children whose injuries were a direct result of the combined exposure to thimerosol and the MMR vaccine. The test cases would be tried in sequence beginning June 11, 2007. So much for our day in court. Out of 5,300 cases, only six would be heard.

Medical records from each claimant were collected, reviewed, and analyzed by our attorneys to determine which cases best represented the claims that the vaccines had caused our children's autism. It was assumed that if there was a favorable outcome in the test cases, the government would then agree that vaccines had injured our children as well and compensate us accordingly.

In August of 2007, our Florida attorney handed our case off to an attorney in Kentucky. Our new attorney had found in the discovery a Merck inter-office memo dated 1991. Merck manufactured and sold the MMR, DPT, HIB, and Hepatitus B vaccines, with thimerosol, which was removed from all vaccines (except the flu shot, which still contains the preservative).

The problem discussed in the memorandum: "The key issue is whether thimerosol, in the amount given with the vaccine, does or does not constitute a safety hazard." 

Merck was aware that the mercury found in thimerosol might constitute a safety hazard in 1991! And here is the conclusion of the Merck memorandum:

"If 8 doses of thimerosol containing vaccine were given in the first 6 months of life (3 DPT, 2 HIB, and 3 Hepatitis B) the 200 ug of mercury given, say to an average size of 12 lbs., would be about 87X the Swedish daily allowance of 2.3 ug of mercury for a baby of that size...It is reasonable to conclude...that thimerosol should be removed from single-dose vials when it can be removed, especially where use in infants and young children is anticipated."

Merck inter-office memorandum, 1991.

They knew. They knew. But the special masters refused to allow our lawyers to present this evidence. Why? By the way - how many vaccines did your children get in their first six months of life? My children all had a lot more than eight.

In 2008, Hannah Poling, a child of about Joey's age, was awarded $1.5 million for the first year (and $150,000 for each year thereafter, up to $20 million) after she received nine vaccines in one doctor's visit that immediately resulted in marked encephalophy and autism symptoms. Her case was severe and clearly related to the vaccinations. Prior to her visit to the doctor, she was a healthy, vibrant, engaged child. Three days after the visit and the nine vaccinations, "she developed high fevers, stopped eating, didn't respond when spoken to, began showing signs of autism, and began having screaming fits. In 2002, Hannah's parents filed an autism claim in federal vaccine court. Five years later, the government settled the case before trial and had it sealed."

The problem with Hannah's award was that the government conceded that autism had resulted from those nine vaccinations she received in one day before it came before the special masters in the VICP court. A concession is different from a decision by the court after a trial. 

"In Hannah’s case, the Department of Health and Human Services advised the Department of Justice not try her case and to compensate Hannah for the injuries incurred after her vaccinations.  The public did not find out about the concession until journalist David Kirby wrote about it in the Huffington Post on February 25, 2008. In a sense, Hannah was the first autism/vaccine injury case on record to be reconciled even though her case did not go to trial.

We have many questions as to why the government would concede this case before trial and rule against others that had similar evidence."

Read more here:

The Omnibus Autism Proceedings Decisions

Because Hannah's case was conceded and did not go to trial, the other @5,300 families still waited on the special masters to make a ruling in our cases. In February 2009, the first decisions were handed down. The special masters found no relationship between autism and the vaccines. All in all, six test cases were eventually argued before the VICP court and six cases were found not to be related.  Because these cases were dismissed with no ability to appeal (because this was not an actual "court"), the remaining petitioners could choose to bring their cases to the VICP independently or quietly walk away.

In an order entered by the Office of Special Masters in the United Stated Court of Federal Claims (that kangaroo court referred to previously), the court wrote, "The decisions in the test cases are not binding on other petitioners in the OAP who claim that vaccines cause ASD. However, unless petitioners have different evidence or theories not presented in the test cases, the results in the test cases indicate that the instant claim is unlikely to be successful."

We had evidence; the court refused to even look at it.

Our lawyers recommended that we withdraw from the vaccine litigation in February of this year and we agreed to do so. Because there was really no point to our continuing when they had already said there was no chance that we would win.

The problem I have with the decision is that the test cases weren't fairly tried in a court of law and therefore were not bound by constitutional rules of law. The VICP was developed to protect vaccine manufacturers from huge jury awards to keep them researching, developing, and manufacturing vaccinations. These vaccinations are then mandated by the government that our children receive before they are allowed to attend school.

I want to state here that I am not anti-vaccination. Do I believe that the vaccinations caused Joey's autism? I have absolutely no idea because we were never allowed to investigate the outcomes of the studies that would have told us whether or not there was a link. There was no access to the databases that had the information we needed because they were controlled by the HMO's. They were not accessible to legal discovery by our attorneys because we were not suing them in a "real" court of law, because we couldn't sue them in a "real" court of law.

There may not be any link between vaccines and autism. But if there isn't, why did the special masters concede Hannah Poling's case before it could go to trial and why were we not allowed to look at the outcomes of the studies which would have indicated there was no link?

Almost ten years after filing our initial claim, we no longer have a legal recourse to find out if vaccines caused Joey's autism.

Stay tuned for part 3...the end of the story.

Monday, December 19, 2011

The Pee Goes IN The Toilet!

People who know me know that there are a lot of things I don’t do.

I don’t cook. I tried to cook when we got married 23 years ago and the things that were coming out of the kitchen were not even remotely edible. I can remember one dish (not what it was exactly) that I wouldn’t (couldn’t) even taste, it smelled so bad. I think we got pizza that night. Luckily, we discovered that Justin is very good at cooking and now I am more of a clean up the kitchen after dinner kind of gal. And I'm great at takeout - as long as Justin phones it in.

But…cleaning the kitchen is about as far as I go when it comes to cleaning. I do. not. like. to. clean. And cleaning really aggravates my fibromyalgia, which gives me a really good excuse reason not to clean my house myself. I convinced Justin that the best thing to do was to hire someone to come in every other week and do the “heavy cleaning,” meaning dusting, vacuuming, cleaning the bathrooms, and mopping the lower level of the house. This arrangement has worked out well. I have fewer fibro flares and the house gets cleaned a lot more regularly than it would be if I was in charge of it. I can put off cleaning a bathroom longer than Jamie can put off a geography project.

I confess to being a lousy cook and housekeeper. Yes, I am a stay at home mom and I am very involved in making sure my kids get to all medical, orthodontic, and dental appointments. I attend their parent-teacher meetings. I am in charge of the special education meetings and documents for Joey. I help with homework, I encourage children who are falling behind or not doing their work, I dole out punishment. I even do secretarial duty for Justin by making his appointments for him, balancing the checkbook, paying the bills, and running interference with telemarketers and Jehovah’s Witnesses. But I do not clean.

So every other Thursday, the woman we hired comes and does the work that I no longer want to can do. She dusts, vacuums, scrubs bathrooms, and mops floors. The house stays clean and smells good for about 12 hours, until the dog again starts shedding puppies all over the floor and the kids have hit the bathroom one time.

We have four bathrooms in our home. This was actually a consideration for me when we bought the house, because I did not want to clean four bathrooms. When I saw the size of the master bath with its soaking tub and separate shower stall, I believe I emitted a groan. Most people would be thrilled to have so many bathrooms. With three boys and a husband, four bathrooms should be a good thing, right?

And we have this wonderful person coming every other week who scrubs those bathrooms. So, what’s the problem?

When you walk up my stairs, the younger boys’ bathroom is at the top of them. And The Smell hits you about halfway up the stairs. There’s no mistaking it. It’s urine. I wonder how a 13 year old and a 15 year old can constantly miss the very large target of the inside of the toilet bowl. You hardly even have to aim, right? But apparently, at least one of these kids is missing the bowl. Is it really that hard to put the pee inside the toilet???? And…it’s not just pee. It’s also poop! (I'm really sorry for the visual; you can imagine how I felt.) How do you get poop on the outside of the toilet bowl and on the woodwork around the door? Do you put your contacts in before or after you use the toilet? This brings up all kinds of issues I don’t even want to think about.

Yesterday, I got sick of The Smell, thinking anyone who came into my house would think either (a) I am not changing the cat litter or (b) we allow our dog to pee indiscriminately around the house. Since neither of my cats is marking its territory and I know the dog would rather die than pee in the house, it has to be my kids. Especially since The Smell hits me going up the stairs. The dog is not allowed upstairs.

Where have I gone wrong? Apparently my potty training skills missed the mark. Literally.

I steeled myself with a bucket of warm water mixed with Oxy-Clean and a wire scrub brush, went into the bathroom, and turned on the lights. Are they serious???? I am embarrassed to have the cleaning lady come and see what is on that toilet. And she comes to clean! She doesn't bring a bio-hazard suit.

I set to work first wiping up as much of the mess as I could with some Lysol disposable cleaning cloths. Just ewwwww.

I then took the wire brush and scrubbed as hard as I could around the corners and the inside of the seat, wiped pee off the floor, and tried not to look at the dirty, urine (and…) stained water flowing from the brush into the bowl.

The more I scrubbed, the less white the seat got. But at least it appeared to be approaching clean. And then I realized that I had scrubbed the paint right off the seat. I couldn’t quite bring myself to give a toilet seat CPR, so we are probably going to be going to Lowe’s for a replacement shiny new seat that they will ruin within the first week of it being attached to the porcelain underneath.

I don’t ask much from my kids in the way of chores. They do their homework (occasionally), have weekly trash duty, help with cutting the grass (on occasion), shovel snow if forced, take the dog for walks, unload the dishwasher if they happen to be unlucky enough to open it right after it’s been run, and they are responsible for keeping their rooms neat. Every other week. Other than that, they play video games and raid our pantry and our wallets. Their lives are pretty sweet. The younger ones even get an allowance for these few chores. We are free rent, food, and an ATM all rolled into one.

Let’s face it. As a parent, I pretty much suck.

Every other Tuesday, I warn the entire family that the cleaning lady is coming on Thursday and they need to straighten their rooms. I remind them again on Wednesday. By Wednesday night, I am yelling. Last time, I peeked into Ben's room and saw something like this:


Okay, it wasn't quite this bad. But it's what I thought I was seeing.

I know college kids are messy. But, this college kid lives at home and is supposed to be putting his clean laundry in the dresser and picking up his books. He's 20 years old, for God's sake! At what point do I get to stop being the maid?

Two weeks ago, after a request that he straighten up his room so the cleaning lady could clean it (I don't pay her to pick up after you!) and having a result similar to what you see above, I went into Ben’s closet and cleaned out the lower portion just to spite him. (Because doing that for him clearly will make him understand why he should be picking up after himself). I came up with four pairs of shoes he’d outgrown (with shoe boxes), two quilts, a duffle bag I’ve been looking for for months, his high school diploma, an honor roll certificate (bent in half), a memoir he wrote for twelfth grade English class that I had never seen before, three pairs of never worn jeans, and a pair of work pants. And that was just on the floor of the closet. (There was more, but I wasn't taking inventory out of shock.)

On Thursday, when our wonderful cleaning lady rings the doorbell, Ben will pile everything that is on the floor onto his unmade bed so that she can dust and vacuum. He will leave all of his crap out on the counter in his bathroom for her to clean around and his wet towels on the floor for me to grab before she gets here.

I think I will “clean” out his desk next.

Thursday, December 15, 2011

CFS or ME?
I have a lot of friends on my Facebook page who suffer from the disease that has been known for so many years as Chronic Fatigue Syndrome. It makes it sound like people are just tired, which is so far from the truth.

An international study, which came out in July, is finally a consensus on the definition of Myalgic Encephalomyelitis and how it should have its rightful acknowledgment as a true illness with definite symptoms. With a definitive set of symptoms that can be diagnosed, there can now be criteria for patients to qualify for research studies, possibly netting eventual effective treatment and possibly even a cure.

After running down the symptom list, it appears that I can give myself this new "definition" of whatever it is that I am living with on a daily basis. Hopefully, with a new definition and all of these experts agreeing that this is a neurological disorder that changes the central nervous system, we will, as a group, be taken more seriously by our doctors.

Plus, doesn't it help to have an actual medical name for whatever this is? It legitimizes the illness and hopefully begins to end the stigma of "Chronic Fatigue Syndrome." Hopefully.

If you would like to read the article, you can find it here.

I wish everyone in the Fibromyalgia and ME communities a very Merry Christmas and hope that the coming year brings us better treatments, better acceptance by the medical community, and better understanding of what living with this chronic illness really means.

Tuesday, December 13, 2011

When Is It Too Much Already?

(Image from

So, by now you've probably noticed that I have not been posting much. To say my life is in a state of upheaval would be the understatement of the year. Possibly the century.

This year has been the year from hell for our family. My mom was diagnosed with a  rare form of cancer and had surgery to remove the lower portion of her left leg on February 1st. Just as she was recovering, she found out that it had spread to her lungs. Enter intensive chemotherapy for four months which almost killed her on a couple of occasions. Now they are going in on December 27th to try to zap the remaining nodule and we are praying that will put the cancer into remission where it belongs. In January, my parents will be moving to sunny South Carolina to finally live their retirement dream. Unfortunately, that is a long ways from where we live and I have been trying to accept their decision, not always with very much grace.

We lost Justin's dad to a heart attack on July 8th. It was a sudden, unexpected loss and very traumatic for our family. The day of the funeral was the day I found out my mom's cancer had spread. That day may very well stand out as one of our worst days ever.

My best friend, who survived invasive breast cancer in 2009, after six months of grueling chemo, discovered she had ovarian cancer. Then the breast cancer came back in her lymph nodes. Last week, she found out that it had spread to her lungs. Her biopsy is today and I am scared to death. Cancer needs to go away, permanently, in the people that I love. She is 37 years old and has four kids. How can life be so unfair?

Last month, I missed Thanksgiving with my husband and children because I had pneumonia and then an allergic reaction to the antibiotic the doctor gave me. It took me a month to recover from that. Just as I was starting to feel better, last week I got a kidney stone. I'm wondering what's in store for me next and whether I will be sitting in my house alone on Christmas Eve because something new and wonderful has attacked my immune system. Living with fibromyalgia, chronic fatigue syndrome, and mental illness is hard enough without having the added bonus of these new assaults on my body. And it's a horrible time for me to be sicker, which is probably why I am. I need to get back to my own "normal" so that I can spend time with my family and friends.

To say this year was hard would be kind of laughable. Let's just come right out and say this year sucked. My mom always told me, "If you don't have something nice to say, then don't say anything." It's good advice, but it also means that I have shut down completely in the last few weeks. I've barely been on the computer and I figured that if I blogged, it was going to be nothing but negative, whiny stuff that no one wants to read. So I haven't been writing and I apologize for that.

Of course, with the number of blogs out there, you may not even have noticed I was gone and if so, that's okay.

I am trying to be hopeful that the New Year will bring something better. I keep thinking things can't get any worse and then they do. But I have a roof over my head, a husband who loves me, three healthy sons, and the ability to do anything I want to do without someone telling me when and how to do it. Those are priceless things.

I can only hope that God will be kind enough to end all of the bad news and replace it with some good news. I keep thinking there has to be hope, because otherwise, how do you get through the day?

Wednesday, December 7, 2011

Old Fashioned Beef and Noodle Soup

As most of you know, I struggle in the kitchen to make anything edible. That has recently changed (SQUEE!!!!), as evidenced by the picture above. Justin is very, very happy right now!

I'm definitely a beginner and still learning (and yes, I've had some remarkably awful dishes that resulted in pizza ordering), but I have recently had a boatload of help from a book that Justin bought me called "America's Test Kitchen Slow Cooker Revolution." Justin watches American Test Kitchen every week on the Food Network and I sometimes have one ear tuned if they are making something I particularly like. But I don't really care for cooking shows (probably because I've been so spectacularly bad at it) and usually the people who are chefs just have these awful, droning voices that remind me of those sports announcers that make me hate televised sports.


This soup is the second recipe I've made out of the book and's not me! It's been the recipes or something, because I made sausage lasagna in my crock pot from a recipe from this book (yes, lasagna!) that was absolutely awesome. And I don't care for lasagna.

I didn't think to take lasagna pictures, but I was smart enough to snap the above picture of the beef noodle soup last night right after I took my first bite and realized that oh my freaking God! I can cook!!!!

So, in the interest of sharing this marvelous discovery, I will share the recipe (with a couple of very minor revisions) for the soup here. I don't want to post up all of their recipes, because you really should buy the book - it's available here for less than $18. Just an FYI - my crock pot cooks really fast, so I shaved time off of this recipe. It calls for you to cook it from 9 to 11 hours on "low" and I only cooked it for about 7 1/2 hours. Also, I used stew beef instead of the blade steak and, because of that, I didn't have to remove the beef from the pot at the end, since it was already in bite sized pieces. This might also have contributed to the faster cooking time. Plan on about an hour chopping time for the vegetables.

Old-Fashioned Beef and Noodle Soup

2 onions, minced
4 garlic cloves, minced
1 tablespoon tomato paste
1 tablespoon vegetable oil (I used virgin olive oil - it's healthier)
2 teaspoons minced fresh thyme or 1/2 teaspoon dried (I found fresh in the produce section)
6 cups beef broth (I used 6 cups water and 6 boullion cubes and made the broth on the stove)
1 pound cremini mushrooms trimmed and sliced 1/2 inch thick (I used fresh sliced mushrooms from the produce section)
3 carrots, peeled and chopped medium (I used baby carrots, about 18 of them)
2 celery ribs, chopped medium
2 tablespoons soy sauce
2 bay leaves
1 1/2 pounds beef blade steak, trimmed (I used 1 pound stew beef and cut it into bite size pieces before putting into crock pot)
Salt and pepper
3 ounces wide egg noodles (about 2 cups) - (I used the small curly egg noodles, one half of an eight ounce bag)
2 tablespoons minced fresh parsley (I forgot this and we didn't miss it)

1. Microwave onions, garlic, tomato paste, oil, and thyme in bowl, stirring occasionally until onions are softened, about 5 minutes; transfer to slow cooker. (I didn't stir them and they were fine.)

2. Stir broth, mushrooms, carrots, celery, soy sauce, and bay leaves into slow cooker. Season beef with salt and pepper and nestle into slow cooker. Cover and cook until beef is tender, 9 to 11 hours on low or 5 to 7 hours on high.

3. Transfer beef to cutting board, let cool slightly, then shred into bite-size pieces. Let soup settle for 5 minutes, then remove fat from surface using large spoon. Discard bay leaves.

4. Cook egg noodles in boiling salted water until tender, then drain. Stir cooked noodles and shredded beef into soup and let sit until heated through, about 5 minutes. Stir in parsley, season with salt and pepper to taste, and serve.

I promise you will not be disappointed in this recipe. These people spent a year with 30 slow cookers going constantly, refining the recipes and adding lots of flavor so that the meat and vegetables don't come out mushy and tasting like you boiled them.

If you make this and it's a success, please let me know. I will definitely be making it again. Jamie even liked it and that's saying something!

Monday, December 5, 2011

I May Have Lost My Kindle...To My Son!

This is my new Kindle Fire...which I may never see when Joey is home. You see the problem, right?

He has taken to sauntering past the family room to see if I am using it and if not, he says, "I was going to borrow your Kindle Fire..." and looking at me as if he should have 24/7 access to my new toy. In fact, the day I brought it home and was showing it to him, he said, "Mom, you need to learn to share your new toys." Really?

My kids have every game system in existence. The older two have cell phones. They all have newer computers than I do. I haven't bought anything new for myself as far as electronics go since I got my new "texting" phone a year ago, which is now completely out of date thanks to Apple and Steve Jobs and my now out of date original Kindle that Justin bought me for Christmas last year. I even had a cashier tell me that I could load my coupons onto my smartphone. When I told her I don't have a smartphone, she looked at me like I had told her I was homeless. How could I be so deprived?

Wow. When I was growing up, we had two televisions (did I mention that my kids all have televisions in their rooms? with cable?) - one was in the family room and one was in my parents' bedroom. There were no computers, no video games, no kindles, no iPods. I had a clock radio for music and eventually a little turntable to play my Journey albums on. We went to the library once a week during the summer and I checked out and read about 7 to 8 books a week. I still love to read, but now I'm doing it on this classy, shiny new object that also will check Facebook, play words with friends, and, apparently, let Joey play some game called "doodle jump." Which he loves. Which he played all weekend, every time he saw me put my new toy down.

I didn't do much reading this weekend.

What happened to riding your bike, going to the pool, playing outside, sitting in your room with a can of Charles Chips cheese pretzels (God, do you remember those? My mouth is watering!) and reading a stack of library books? I used to rearrange my room every week when school was out. Moving furniture around kind of became a hobby. I learned to cross stitch when I was still in high school. If I wanted to talk to someone, I picked up the phone in the kitchen (there was no phone jack in my bedroom until late in my teens) and pulled it as far into the laundry room as the cord would allow to get some privacy. We didn't have a dishwasher or a microwave until I think I had already graduated from high school.

Did I feel deprived? Of course not! I had everything I wanted then. Lots of books to read, friends to go do things with, a best friend who lived right behind me for sleepovers and playing cards all summer, a bike to go to the pool (by myself or with a friend - never with my mom). If I wanted to watch television, I watched it with my parents and/or my brother. I can remember coming home from dates on Saturday night and watching Saturday Night Live with my younger brother. We used to spend family time and have dinner together every night. On Christmas Eve, we played Monopoly and hung out, while I bugged my parents to open presents early.

There simply were no electronic devices available for me to want. Now every kid has a device of choice. And a computer. And don't go anywhere without your cell phone in case you need me or some deviant tries to pick you up in a van. But it doesn't really matter, because the kids are doing all of their socializing in their rooms, behind closed doors, online. It's a little scary. It's also how our social world is working now. I feel sad for this generation of kids who aren't growing up without internet access and texting because they are missing out on so much homemade fun.

But then again, having a cell phone would have been nice the night of my junior prom when my date's car battery died or when I was a little homesick and wanted to get away from the mean girls at a sleepover. Not that there were any mean girls...well, maybe before we moved to Virginia there were lots of mean girls, but at least they couldn't taunt me on Facebook.

Anyway...I suspect Joey will be freakishly excited when he opens up his very own Kindle Fire all pre-loaded with the games he told me he likes on Christmas morning. Justin was a little worried that he would be bored with it by then, but I don't see how that's possible. Want a new book to read? Let's search the Amazon store. Looking for a game? Let's see if there's a free app for that. How about watching a movie? Or a television show? Yep, you get streaming. It's all on there.

Is this a better world for kids to grow up in than ours was? I don't think it's necessarily better or worse. It's just different. And the results of this generation of gaming and texting and Facebook are yet to be tallied until our kids grow up and either excel at what they want to be or are living in our basement, immersed in World of Warcraft and emerging only after dark to steal food from your refrigerator.

Saturday, December 3, 2011

And Then the Dog Exploded

So last night, Jack got really sick. And we didn't realize it. I am a horrible pet owner.

Justin and I have been slightly distracted lately, what with his working about 900 hours a week and my having pneumonia and pretty much not doing a thing around here for three weeks. Last night, we were almost having a normal evening. We watched a little television; Justin went to bed; I worked on a Christmas gift until about 1:00 a.m. The dog didn't make a peep all evening, but some unfortunate smells were emanating from his rear end. I should have known.

After I went to bed, he started to bark. He'd bark. Justin would go downstairs and tell him to stop. He took him outside to see if he needed to go potty. I went downstairs at 4:00 a.m. and finally drugged him. We thought the neighbor's Christmas lights that move were annoying him. They're annoying me, so why not the dog?

Justin got up around 7:00 after not so much sleep and came down to walk the dog. The dog whimpered while he was putting on his shoes and then it happened. He couldn't hold what he had been holding all night. Thank God we have hardwood floors.

We had given him a little too much people food in the last three days and his poor tummy got upset. It's sensitive that way and if we're not careful, he ends up not feeling good because he is such a beggar and we can't resist those big brown eyes. I guess we were a little bit too generous (although we didn't give him any of the chicken enchiladas, so I thought we were doing okay) because apparently he had to let go before Justin could get him outside. And he must have really needed to go because he is mortified when he has an accident. He's good that way.

Justin got everything cleaned up by the time I came downstairs at 8:00, totally groggy. But I could smell the poop. Hey, it's all about the poop, right? Justin had cleaned the floor, opened the windows to let some (freezing) fresh air in, and turned on the fireplace so it wasn't arctic winter in the family room.

The poor dog. I drugged him when what he needed was to get outside to go potty. His tummy was upset and I didn't realize it. I feel like the worst pet owner ever.

He seems to be recovering. I cooked him some hamburger and rice, which is his upset tummy food prescribed by the vet. I carried ice cubes to him on his bed so he wouldn't get dehydrated. I contemplated calling the vet to come take a look at him, but decided to wait out his hangover and see if he got back on his feet. He's been acting a little stoned all day, but he seems to be coming around.

Meanwhile, we spent the afternoon replacing the curtains at our front door with that window film that is absolutely impossible. It took way longer than it should have, although I should have known it was going to because Justin told me it would and he's usually right about these things.

So now we have a dog that seems to be recovering and window film that blocks people from seeing into and out of the door. The lights will still shine through, but hopefully every time the neighbor brings her yappy, hyperactive puppy (Thor? Really?) out to go potty in their front yard, Jack won't see him and start going nuts. Hopefully he'll stop barking at every car that drives by. Anything that moves, he barks. We don't like barking. It's aggravating and it's a behavior that I would like to get him to stop, but I don't know how to train a dog to not do something. I've tried talking to him about it and being reasonable, but he won't listen. I guess the instinct to bark at dust motes in the air is just stronger than rationale from the woman with the treats.

Meantime, I am pretty much fully recovered to my own "normal," after three weeks of hardly being able to move and not knowing what the hell was wrong with me. I got overwhelmed by the blogosphere and thought I wouldn't be able to write again after writing a post I thought was funny as hell, but Justin and Ben both said, "meh." You can't be funny all the time and it's been a bad year.

I went out about 24 hours after starting the second antibiotic and grabbed myself a Kindle fire (which I may never see again because Joey discovered how many free games are on it), worked on my sewing, and decided to make a homemade pie. I know, right?

I may be blogging less in the immediate future, but I hope you'll come back and read when I do. I'm just kind of wiped out and we're going through a very hard time. Grieving is hard. Sometimes God isn't fair and has a warped sense of humor. I wonder how we're going to get through Christmas, but I figure the earth will keep turning regardless of what we are going through, so we'll make it somehow.

Thanks for being patient.