going on vacation to boston, maine and new hampshire till july 13…i might write from there, i might not. i might write when i get back, i might not…happy summah everyone!
going on vacation to boston, maine and new hampshire till july 13…i might write from there, i might not. i might write when i get back, i might not…happy summah everyone!
Eighteen-year-old Jessica Terry, brought slides of her own intestinal tissue into her AP science class and correctly diagnosed herself with Crohn’s disease.
“It’s weird I had to solve my own medical problem,” Terry told CNN affiliate KOMO. “There were just no answers anywhere … I was always sick.”
For years she went from doctor to doctor complaining of vomiting, diarrhea, weight loss and stomach pains. They said she had irritable bowel syndrome. They said she had colitis. They said the slides of her intestinal tissue were fine, but she knew that wasn’t right.
“Not knowing much about a disease you’re growing up with is not only nerve-wracking, but it’s confusing,” Terry told theSammamish Reporter.
So when local pathologists stopped in to teach students in her Biomedical Problems class how to analyze slides, the high school senior decided to give her own intestines a look.
What she found? A large dark area showing inflammation, otherwise known as a granuloma–a sure sign of the intestinal disease.
To confirm her suspicion, she checked in with her teacher.
“‘Ms. Welch! Ms. Welch! Come over here. I think I’ve got something!” she shouted.
Mary Margaret Welch, who has spent 17 years teaching science at Eastside Catholic School, had a feeling Terry was on to something.
“I snapped a picture of it on the microscope and e-mailed it to the pathologist,” Welch said. “Within 24 hours, he sent back an e-mail saying yes, this is a granuloma.”
The finding impressed doctors.
“Granulomas are oftentimes very hard to find and not always even present at all,” said Dr. Corey Siegel, a bowel disease specialist at Dartmouth-Hitchcock Medical Center. “I commend Jessica for her meticulous work.”
While Terry’s glad to finally have answers, she now knows she’ll have a tough road ahead.
Crohn’s disease is an incurable, though treatable condition caused by inflammation in the intestines. It can cause malnutrition, ulcers, pain and discomfort.
Still, she looks towards the future with optimism. She’ll begin nursing school in the fall and hopes to have a kid’s book on Crohn’s disease published.
“It was the best of times, it was the worst of times…” -Charles Dickens
It has been a while since I wrote of my medical stuff. Probably some sort of psychological avoidance issue. Or possibly because of the amount of time that I have been dealing with it of late, the last thing I’ve been wanting to do is write about it. But there have been some new developments so I feel obliged to share them.
As soon as I was adequately recovered from the last angiogram, I began intensive work with my chiropractor-2-3 times/week. The work was hard, deep and usually left me feeling pretty crappy for the next day or so. The good news was, that we were seeing some definite, although not permanent, improvement. We at least felt that we had honed in on the root of the trouble. The bad news was that we weren’t really sure what she was doing that seemed to help and if her work would/could have any permanent effect.
Also, my last 2 doctors, neither of whom do I respect (see May 21 post “A Bitch of a Week”), suggested that my problem was caused by my pain medicine and not the other way around. Although this seemed completely illogical to me, I was so desperate, that I think I was open to hearing just about anything. So, when they suggested I get off my pain meds, I was at least willing to give it a try. My fear was, what if I get off the meds and the pain is still there only now I get no relief, have no safety net? That concerned me, especially since getting off the drugs is a long drawn process which need to be undertaken with great care so as to avoid or at least ease withdrawal, which can be a very painful experience on its own. Also, neither of these doctors told me how I should do the withdrawal and neither referred me to another doctor who specializes in helping people wean gently off of narcotics. I was, yet again, alone in my journey.
So, I started calling around to different clinics or programs that were designed to help people kick their drugs. Only problem was, I wasn’t nor am I a drug abuser. Evidently one has to be a hard core addict or as rich as Miss Lohan or Spears to get any help. I was told point blank by 2 different admissions directors that they weren’t the place for me because I am simply dependent on my medicine to feel well, not addicted in order to get high. Damned if you do, damned if you don’t. I did speak with one facility that would have happily helped me to part with a great deal of my money for the privilege of spending 28 days away from my family, attending NA meetings, etc.
Surprisingly, my playing around on the web landed me right at the internet doorstep of the most amazing perfect e-match of a doctor that I could imagine. Her website described someone who was the doctor equivalent of tall dark and handsome. Dr. Gayle was western trained and she is an M.D. Her field of specialty was gastroenterology (a girl after my own spleen), and internal medicine, but she had also studied with a medicine man on a Native American reservation and she became open to other ways of healing. She then learned about other healing modalities and now runs a completely integrated practice. She is well known in her profession and highly respected. She treats the body, mind and spirit as a whole and considers herself a partner with the patient to figure out a way to health and wellness. Imagine that! AND her practice is about a 20 minute drive from my house.
I called her office and was able to get in last Tuesday. And what happened next was truly amazing. We sat, I spoke, she listened. She took some notes and asked a few questions, but mostly she just listened. And then she stated quite simply and matter of factly, that she had a pretty good idea about what could be causing my pain. Just like that. At the end of our meeting she looked me directly in the eyes, put her hands on my arms and said, “We will figure this out.” And I believed her.
We all have a very large muscle that runs up the length of the torso, connecting at the hip and up near the diaphragm (the very diaphragm from where the median arcuate ligament was cut in my original surgery), called the iliopsoas muscle. Her thinking (which was confirmed on examination) is that this muscle has been in chronic spasm since the surgery, likely as a result of the body trying to protect itself from the trauma of the surgery. She said that it would account for all of the pain that I have described to her-the squeezing inside my body, the wrapping, the burning-all of it (other than the normal aches of being a grown up and having 3 kids and living in a stressful world). But not only that, she actually has a plan for dealing with the muscle. She told me that we have to break the cycle of the spasm and re-teach the muscle that it doesn’t need to be that way-that it can simply relax now. Not only that too, but she has a plan for breaking the cycle and that is through the use of magnesium injections which cause muscles to relax.
So, last week I had my first injection. I won’t say it was a pleasant experience, because it wasn’t, BUT at the end of the treatment, my pain was gone–GONE!. And for the nest several days I woke up without pain. It was truly amazing. She wouldn’t venture to guess how long the relief might be, planning several more injections-once a week for the next month and we’ll take it from there. I still take my meds because A. I can’t just stop them and B. there is no expectation that one shot is enough. In fact as the week has gone by, I have felt some pain creeping back in, but I am taking much less medication than I was even a week ago. I am scheduled for another injection this afternoon.
It’s too early for me to claim victory-way to early, but for the first time in a very long time, I actually feel hopeful…
More to come.
While I would never presume that you will actually ever read this, I am going to write it anyway. The Supreme Court today, rejected, some yadda-yadda thing about DADT (I’m not trying to make light, I just really don’t know the details and for now, am too tired to study up on it. I do, however, know the gist.). A couple of weeks ago, the California Supreme Court upheld Proposition 8, preventing gay couples from marrying in the State of California. It wasn’t that long ago that the same conversation took place about people of color in the military, women in the military, interracial marriage. It seems that gay is the new black.
You may wonder where a letter like this fits in a blog about being a parent. This is exactly the place it belongs. It belongs here on behalf of my children for whom I wish a world in which equal rights are a given, and on behalf of the children who have had to lose their jobs because of their sexual orientation. I write it on behalf of all children who would be safer because of having certain individuals back in the military protecting us rather than back here fighting for the very rights the rest us take for granted.
When you were running for president, you stated explicitly, that while you were not personally in favor of gay marriage, you were in favor of equal rights and that you would very quickly into your presidency, overturn Don’t Ask, Don’t Tell. Now, I understand that you are a very busy man, running a country that was previously run into the ground, dealing with a war started by criminals, trying to rescue a sinking economy that was set afloat and then popped by your predecessor, etc, etc. You are busy, as am I. I don’t run a country, but I do run a household, and I can tell you that it is no easy task either. All in one week, washing machines break, brakes on 2 year old cars go, toilets back up, lamps short out, televisions flash their dying whatever it is they flash, children get sick, dinners need to get made, etc, etc. (BTW, I have been in chronic pain for the last 2 1/2 years as well and I am here to tell you that that in and of itself, is a bitch.) Like you, I have almost no time off, no time to myself, and people who rely on me for their every little (and big) thing.
O.K., to get to the point. We all have tasks that we put off, even willing to take on harder, more grandiose tasks, to avoid doing-tasks that (and here is the important part) when all is said and done, we imagine to be much harder, much more onerous, much more difficult than they really are. In our imaginations, we make the task bigger than it is and in doing so, we give the task power over us. (For an example, see my post from last week called “A Daunting Task.”)
You can, with the stroke of your pen, overturn Don’t Ask, Don’t Tell. There is a bill in the House called HR 1283, which, when it passes, will do just that. But meanwhile, you hold the power in your hand. You know the facts-since DADT became policy, 13,000 service men and women were released from their duties-men and women who actually want to be in the military, all the while extending tours of personnel who want to come home. There is no evidence that keeping gays and lesbians out of the military is of any benefit to our country and could, in fact, be a major detriment. The public, overwhelmingly (yes, church going Republicans, even), are in favor of ending DADT. It is time. It is a task, that I can only imagine, seems worse to you than it could ever actually be. Once DADT is repealed, the conversation around it will disappear, the people who support you will continue to support you, those who don’t will continue to not, and those that are now sitting on the fence, those GLBT folks who supported you in a big way and are having doubts, will have faith that they will see equal rights in their own lifetimes. We will have access to thousands more troops who can live their lives openly, willing to fight for and die for our country just like any other poor soul. (I can’t believe I actually just typed those words, considering what a pacifist I am.)
Let those in the military closet come out. Let those that have served long past their commitments come home. Reinstate those that were discharged and give them back their dignity and honor. You are a smart man, and the writing is on the wall. DADT will end. Let it be part of your legacy to end it sooner rather than later. I assure you, once you do it, you will realize that it is not nearly as big a deal as I am imagining you are imagining it. You face big, complicated, scary issues. This one is easy.
I’ll make you a deal. You overturn DADT (by weeks end, let’s say) and I will tackle those EOB’s and medical bills in the corner of my office. What do ya say?
Then I’ll give you an earful on healthcare…
Yes, You Can!
With the utmost respect and admiration,
Last year on this date, we celebrated our son’s coming of age. He put together an amazing ceremony with readings from many cultures and writings from many people throughout the world. They all reflected to him, what it means to become a man in today’s world, to be part of a bigger community, to have a deeper consciousness and to take to take on greater responsibility in this world. I wrote a piece to him. It is what follows.
As most of you probably know, I am a pretty big baseball fan and a crazy Red Sox fan. I am not, on the other hand a religious person. When my husband and I began our journey as parents we agreed that we would raise our children to be good people, but that we would not raise them to follow any particular religion and that we would leave that choice to them as they got older. So it was much to my surprise (shock) when our son told us he wanted a bar mitzvah. How could this have happened I thought? Where did we go wrong?
Of course, we also have given our children just about everything they have ever wanted and we have certainly supported them in all of their endeavors, so there was no question that if he wanted it, we would make it happen. Meanwhile though, we wanted to ensure that he was mindful and reflective of this experience and was doing it for the right reasons, not because it was what he thought his grandparents expected or because it was what many of his friends did. We wanted to ensure that he was aware of the meaning behind his words, be they English or Hebrew. We had many conversations with J (some rather intense) about what it was he really wanted in doing this ceremony and in acknowledging his journey to adulthood. We encouraged him to explore his feelings and goals and his own belief system–to look at where he sees himself in the world and in his own community. J, with us, came to an understanding that he really wanted a ceremony to mark his coming into adulthood and he wanted to be surrounded by the important people in his world to share this moment in his journey.
Somehow (through divine intervention of the baseball gods) we found ourselves able to have this celebration at this amazing house of worship (Dodger Stadium). It is not, of course, Fenway Park, but the spirituality of the game is definitely here. What a perfect location for us. I’ve always joked that if I had to chose a religion, it would be baseball. The rules of baseball are not unlike the rules in life. They are a guide, a set of clearly defined directives for playing the game fairly (without instant replay) and allowing everyone equal chance at greatness. Even the torah is not meant to be read literally but as a set of metaphors and lessons for how to live a just life.
One day when J was about 8 or 9 he told us he wanted to play baseball. I was so glad when he chose it as his one and only sport. Baseball combines the best of a team sport and an individual sport. Sometimes you stand alone and strike out and other times you hit one out of the park. Every day, people have outstanding moments in a game but rarely can one person be given sole credit for a win and likewise even though we’ve seen people massively blunder a play (think Billy Buckner), one person can truly never take full blame for a loss. Sometimes you sacrifice for the good of the team, sometimes you get beaned on the head, every once in a while, you have a day-a moment when you pitch an elusive perfect game or, you face challenges that seem insurmountable, but you always have your team around you to lift you up. Each day and each game bring new opportunities and possibilities.
So too is life.
Each failure or crushing defeat brings with it the optimistic chant, “there’s always next year” and sometimes, sometimes when you keep the faith long enough (86 years) next year actually comes, you can overcome the demons of your history and just like that, curses can end.
Things can turn on one pitch or when you seem to be down to your last out, one small gesture can turn it all back around-David (Roberts) can look Goliath right in the eye, challenge him head on, steal a base right from under his nose, and know that things have turned around just like that. Empires fall and dynasties end, and the underdog, the little guy can, with the right bunch of idiots around him, do the impossible.
Every spring, I wait with anticipation for opening day. Where I come from, the beginning of baseball season, means spring is here. Here in Los Angeles where temperatures fluctuate by only a few degrees from January to June, the coming of spring may not mean much, but in Connecticut, it means the snow will finally be gone, the crocuses will pop up and the daffodils will soon follow. It means a fresh start after the long dormancy of winter. the start of a new baseball season means a clean slate, a new beginning, a new chance, and eternal hope and optimism. Such is the start of a new life. When J was born (4 weeks before we expected him, but of course, during spring training) , we could see for the first time as parents, a new life, entrusted to us, a life filled with hope and optimism-a perfect start. We saw a new person with a very old soul. This child has not disappointed. Every day he shows us greatness, sometimes he makes an error, but he gets back in the game and continues to play, sometimes he makes an amazing play, a web gem moment. He is loyal to his friends and family–his team, and he is a team player. J has and has always had great empathy and compassion. He loves animals and he has a value system that is deep and unwavering. At the same time, such as in the game of baseball, J knows that he can never take things too seriously. He has a great sense of humor and sees life in all it’s irony and foolishness. Many nights before going to bed, I find myself in J’s room laughing my ass off with him over something foolish but hysterical. He is a powerful good friend, a fierce big brother, protective and challenging at the same time. He is as likely to pick on M (his younger sister) as he is to hang out with her playing a video game, or showing her the latest funny You Tube video. When J was little, if he got sad or hurt, he only wanted his baby sister M to comfort him. J delights in his newer baby sister, and told me shortly after her birth, that he finally understands how much we love him.
Recently, in a game in Baltimore, Manny Ramirez made an amazing catch in left field, ran up the back wall and high-fived a Sox fan, before running back down and throwing the ball to double up the runner on first. I have never seen anything like it before and that is one of the reasons I love baseball so much. You never know what is going to happen and you continually see things you have never seen before. that is the beauty of the game of baseball and that is the beauty of the journey of life.
Mahalo is J’s middle name as most of you know, because we got him when we were on our honeymoon in Hawaii. Mahalo means thanks you in Hawaiian. J, as you travel the bases of life, always remember the rules, and always always Keep the faith. Mahalo for being our son.
I just put my 3 1/2 year old to bed. She was chanting “What do we want? Civil Rights! When do we want it? NOW!” Crazy, right?
She doesn’t know the meaning of those words and it is my deepest hope that long before she has her own children, there will be no need for rallying cries such as this. But until that day, the chant must be repeated loudly and clearly across our nation and across our world. An hour ago, my family returned from a demonstration, one that was organized very last minute, in response to both the disturbing decision by the California Supreme Court and the firing of Lt. Dan Choi for publicly coming out of the closet. Lt. Dan, as many were calling him tonight, was there to speak, passionately and from his heart about knowing first hand how important it is to fight for the right to love. As simple as that. This man spoke, and many listened as he put it so clearly. This man who has risked his very life for this country is fighting the battle of his life for the simple right that so many of us take for granted. I don’t agree with war and I have never understood a person who would choose a life in the military, but this man, this strong man, this eloquent man, who has become a symbol for a movement to which he has been drafted, showed me the true meaning tonight of the words “courage” and “hero.”
This afternoon, I told my children that I wanted to attend this rally and that I wanted them to go too. I wanted them to understand what it means to be a part of something bigger than one’s self. We went, and my husband met us there and we held signs and took pictures and chanted and listened. And my children felt the energy that is created when many voices come together as one. I told my children after, that the reason I wanted them to go is that I want them to be able to tell their children what it feels like to be the change they want to see in the world. I told them that I hope that their children will ask them with confusion how it was that homosexuals could not marry, could not be afforded the same rights to love and live and die for their country-that their children will not be able to even imagine this world.
Here’s the thing. I was going to write a funny piece about the “don’t ask, don’t tell” life of a mom. How as long as you don’t ask me if my beds are made, I won’t tell you that they aren’t. As long as you don’t ask me when I last showered, I won’t tell you. As long as you don’t ask me if the kids had cereal for dinner, I won’t tell you. We all walk around with our dirty little secrets and an unwritten code that we won’t ask the real questions and we won’t expect the real answers. BUT, after going to this rally, after listening to Lt. Choi speak of the necessity to deny his very being in order to keep his job, a job that so many Americans consider heroic, my dirty little secrets seem insignificant, not even worthy of mention. To live your entire life as a lie-don’t ask me if I am gay and I won’t tell you, is incomprehensible to me.
There are so many problems that we as a country and a world face-the environment, the economy, healthcare, disease, education-that it is entirely mind boggling that we even need to spend our resources to fight for a basic human right. Rick Jacobs, chair of the Courage Campaign, Lt. Dan and another young man whose name I did not get, spoke of these things and we listened and we replied and we shouted and we told our children that we must pick our battles and when we do, we must fight for them with everything we have. I grew up in a time when, in certain places, people of color could not drink at the same water fountain as white people. Last November, we elected an African American man to the highest office in our land. Yesterday that very same man nominated a Latina woman to the Supreme Court of the United States of America.
Times have changed. Times are changing.
It is time to change don’t ask, don’t tell. It is time to ask. It is time to tell.
…if you google “prop hate” and then scroll down to the bottom, you see the words “Blog posts about prop hate”. At this very moment, 9:55pm pst May 26, 2009, if you click on that link, the next page shows MY blog in the number 2 position out of 472,061-holy crap! This is so cool-thanks to everyone for reading my blog!!!!