Thursday, May 23, 2013

Poetry


Today I'm holding in my heart on of my favorite poems:

"Nobody Knows My Name¨

I´m tired 
dead anonymous tired
of getting mail addressed 
to all those people I never was

Gustavo Peres
Gustavio Penley
Gary Porris
Gus Perry
Gustaf Pirey

Nobody here knows my name.
This would never happen in Havana

- Gustavo PĂ©rez Firmat

Sunday, April 21, 2013

Boston v. Royals, a home coming.

Things have been a little rough in Boston recently.  I was home for the afternoon on Monday, April 15th, as public schools in Massachusetts are largely on break this week. I had the local NPR station on, as I did house work. After hearing about the bombing I turned on the TV and was shocked to see what was happening. I am not a marathon attendee as I'm not a big fans of crowds, and this is one of the biggest crowds in the city annually. This area, however, is one I know pretty well. I have visited an acupuncturist in the building above one of the bombing locations. I've been to the Copley library dozens of times. To see somewhere so familiar stained with blood, inundated with chaos, was jarring. 

The following days our city was coming to understand what had happened. Thursday evening photos of the suspected bombers were released. I was driving on 93 north back home around 10:30 that night, and saw a number of state police cars fly past me. I can only assume they were headed to Cambridge, as the events were unfolding there. I was awoken at 6:30 by a robocall to stay home. The city was in lockdown, the manhunt was underway. By the end of the day Friday, one suspect has been killed, the second is police custody. 

Which brings me to Saturday, April 20th. We as a community had been on edge for a workweek. And I was going to a baseball game with my sister. I don't attend games often, this was a special treat to begin with. We were in for a treat; a good game and a cultural moment. 

 There was a clear police presence.
 We were still home.




 First responders from the marathon.


 
 Welcome back, Big Papi!


 A beautiful day at the park

 Its Neil Diamond!
 Everyone is standing to sing...
 Sweet Caroline...
 Bum bum bum!

"Fenway Park is a little lyrical bandbox of a ballpark. Everything is painted green and seems in curiously sharp focus like the inside of an old fashioned Easter Egg. It was built in 1912 and rebuilt in 1934 and offers, as do most Boston artifacts, a compromise between man's Euclidean determinations and nature's beguiling irregularities." John Updike in The New Yorker (1960)

Friday, December 28, 2012

Sharing Gluten Free Advice

A friend had asked for any words of wisdom I had in going gluten free. The email be came quite lengthy, and I thought other people may find it helpful.

Email:
The first step in going gluten free is to understand what gluten is. This list: http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html goes through all the names gluten can be hidden under. Be very suspicious of anything with "natural flavors". If your friend has a smart phone, I recommend downloading an app like evernote, and saving this document there. When reading the ingredient list in the store, and I come across unfamiliar items I search the document to see if its gluten-related.

Next, I suggest your friend go through the cabinets, fridge, and freezer and identifying what has gluten in it. I put stickers or a mark on them to signify which aren't safe. Depending on how much processed food there is, she may find lots or little gluten. She also has to look through her make up, lotions, anything that can go in or on her body. I have been glutened from face cream, mascara, lip gloss, and its a dickens of a thing to figure out.

The key to being successful at living without is to focus on what you still can eat. Lots and lots of fruits and veggies! All fruits and vegetables are naturally gluten free. Alternatives to wheat, like rice, or quinoa, milk, eggs, butter, coffee. Every GF-er has product preferences. I prefer Udi's gluten free products (bread, granola, etc), Tinkyada Pasta Joy (aka the GF pasta with a bunny on it), and King Arthur's flour/mixes. It is very expensive to replace "regular" foods with GF alternatives. For example, the cheapest I've found Udi's bread is $5 per loaf, and the loaf is smaller than traditional packages. Its seems much smarter to me to find breakfast alternatives. My favorite breakfast is rice, beans, a touch of cheddar, a sunny side egg and some avocado.

Eating out can be difficult, she has to be a staunch advocate for herself. Allergyeats.com is a great website (and app) to navigate peer reviewed restaurants. I find the most success, with restaurants that don't have GF menus, to review the menu to find the most likely GF items, and then review with the server what my needs are. Often the manager comes over to clarify, and will typically bring my plate. The best chains I can suggest are Not Your Average Joes, Joe's American Bar and Grill, Wagamama, and the hot food bar at Whole Foods. Remember, its her health, she is the only one with something to lose in the process.

I would also recommend collecting data. There is a bias that can occur when we try new diets that documentation can clear up. I would recommend starting with a summary of symptoms, including duration, in as much detail as possible. I came to be gluten free through a juicing diet. I had been feeling miserable for years, and had developed acute symptoms. Once I started reintroducing foods I found the symptoms to reappear with gluten, dairy and soy. Many people who have gluten intolerance/allergy often have multiple food issues (my mother has Celiac's disease, as well as intolerance for fish and sea food, but my grandmother has just Celiac's). If your friend has some remittance of symptoms but not a full recovery after a month of clean (no accident) GF living, she may want to look at these other allergens as well. The top six allergens are gluten, soy, dairy, fish, tree nuts, and peanuts.

I hope this information helps your friend. Its not an easy transition, but I do believe it saved my life. Please let me know if there is anything I can do to help!
/End Email

These are my suggestions, and should not replace medical advice.

Sunday, September 23, 2012

Making long distance work

Due to work requirements, my partner and I are currently living at opposite ends of the United States. We do the best we can with visits, but they are fewer and longer between than we'd both like. To get through the difficult interim moments, we have come up with a few solutions, all of which make me thankful for technology.

-Date Night
We get together on Skype of FaceTime, and do an inane activity together. I'll be with him while he cooks dinner. He will be with me while I sweep the floors. But the most fun we have is dedicated date nights. We pick a time and date, and an activity. Often it involves watching Netflix instant together, while I eat dinner and he eats lunch. It doesn't sound exciting, but it really is the high point of my weekend.

-Video Messaging
With time zones and work schedules (I'm at work by 7 AM and asleep pretty early as a result), it can be hard on weekdays to make connections. In the morning while I'm getting ready or heading to work I record a video on my phone. I then load it privately on a youtube channel we share, so he can watch it while he gets ready for his day. Its hokey, but it makes me feel like he is more involved in my day to day life.

While long distance relationships are hard, we are making it work. I'm thankful for the effort we are both willing to put in, the means we have to get together, and for the technology that makes this all more bearable.

Sunday, September 16, 2012

10-10-10

In life we all experience stress. Daily stressors, like traffic or dropped toast, come and go. Larger stressors, major illnesses, major life changes, are often longer lasting. Working with teenagers one of my main goals is to help them find perspective. Yes, stress with friends is unfortunate but for some students not life altering. Failing one quiz is a learning lesson, not a mortal failure. This was all summarized in Suzy Welch's book 10-10-10 (http://www.amazon.com/10-10-10-Life-Transforming-Idea-Suzy-Welch/dp/1416591826).

Mrs. Welch is married to business man Jack Welch, and comes at the issue from a business perspective. In summary, she suggests reviewing if a problem will matter in 10 minutes, in 10 months or in 10 years. I will sometimes change the time frame, depending on the student's ability to conceptualize time. It has been one of the most effective ways I've found to help ground others (and myself!) in times of stress.

The next time we are inevitably stressed, I encourage you to consider, in 10 years will returning an email matter? Will spending time with your family? Will it matter in 10 months? Maybe, but really think about it.

And if the problem is traffic, the answer is no.


Wednesday, August 8, 2012

Exciting summer

This summer I've had lots of great opportunities. I visited southern California, learned to swim, and taken up origami. This weekend I'm taking an intro to sewing machines class, too! I'm very thankful for all the fun things I've been able to experience this summer!

Monday, July 9, 2012

Sunday, July 8, 2012

Soy safety tip

Soy is everywhere. I looked a little while back, and it's in the olive oil cooking spray I had been using, resulting in poisonings. I shopped around and ended up with this oil spritzer from Crate and Barrel. So far, it's been great - highly recommend it!


Happy (SAFE!) cooking :)

Sunday dinner

Two egg whites, one yoke beat together, slices of farmers market tomatoes, Daiya cheddar "cheese" wedges, Udi's whole grain bread, with Earth Balance soy free spread.




A nice, safe, quick dinner for a hot summer's night. :)

Tuesday, June 12, 2012

Self Advocacy, and Answering Questions

Speaking to an acquaintance about the health issues I've had he suggested I may want to post a more detailed telling of my experience, in hopes of helping another person out. Given the number of personal accounts I read in trying to find my way, I will take his advice. Please be aware this is only my experience, and cannot substitute your own consultation with medical care providers. This is an abridged overview, with some medical visits omitted for brevity. In total I have seen two dermatologists, two rhuematologists, an infectious disease specialist, a pulmonologist, a psychiatrist, a gastroenterologist, a sleep specialists, a weight health center, a nutritionist, a neurologist and an allergist. I am also fairly certain I have not figure my whole situation out, and more information may come.

In the spring of 2010 I was simply miserable. I had a rash over large swaths of my body, (warning: images of skin rash) largely on my joints. The rash wasn't itchy, but painful, particularly when wet. Worse still, I was tired all the time, confused, irritable, easily angered, quickly getting lost in familiar places, and had trouble finding words. I would look at my friend trying to say something, trying to will him to read my mind, but nothing came out. Occasionally I would switch and be able to express myself in Spanish, when English is my first language. As such a verbal person, this was devastating. At first doctors thought I'd been bitten by a bug, or perhaps I was very stressed. Yes, I was stressed, but it was a symptom and not the cause. I was sent to the dermatologist who gave me a prescription antihistamine cream and said to come back if it didn't get better. It got worse, and my symptoms increased. They biopsied the rash on my knee, which came back with the results of "erythema multiforme", or, a nondescript rash with wood like striation. Well, they said, as its on your joints perhaps a rheumatologist. I researched and found a doctor that met my criteria. I was seen by his fellow, and cursorily dismissed, sent to another dermatologist who "has an interest in rheumatology". By this time I had been put on a course of steriod, which may have been one of the worst experiences in my life, and the rash had disappeared. The second dermatologist (and his army of five student doctors) said to call again if the rash came back.

While I no longer presented with the rash I still had all the remaining symptoms. I would fall asleep two hours after waking up, even after drinking copious amounts of caffeine. Further, I didn't feel any caffeine withdrawal symptoms. I had been training for my first 5K when this illness hit in full force, and could no longer walk up a flight of stairs without feeling winded and dizzy. I spoke to my primary care doctor, and we agreed for another rheumatological consult. This rheumatologist was very through, spending ample time with me, asking questions, appreciating my honesty and she was very respectful of me as a person. She found my pulmonary function to be diminished, and check my cardiac health as well. While it was clear something was wrong, she couldn't find anything related to her field.

From this point we consulted with an infectious disease specialist. My symptoms presented as similar to blood disorders or an infection. Given my high SED rate, infection was more likely. This is when my weight began to be treated as a cause. Multiple doctors began to say "If you just lost some weight you would feel better", or "your body is under a lot of stress with your weight". I will freely admit I was very over weight, with a BMI of 43 (morbid obesity), but I had been fighting with my weight for six years and only now did I have this trouble. Further, it wasn't for lack of trying with exercise most days of the week and limited calorie intake. This, perhaps, was the most painful part of this experience. I felt like I was being blamed for my body betraying me, that all my efforts were over looked, and if I were just not another lazy fat person I'd feel better. Being my mother's daughter I wallowed for a short time and then went in to battle mode.

Anything a medical provider wanted to try, I was game. No matter the pain or the humiliation, I would do it. I did a sleep study, and the results did not clearly indicate an apnea (though the private company who ran the sleep lab was convinced I needed a CPAP machine. No, I don't have one, yes, I'm fine. Consult with another sleep doc recently found suspicion if I'd had any troubles to begin with.). I started to see a counselor to prove it wasn't all caused by depression (it wasn't, but my word as a mental health provider wasn't enough). I saw an endocrinologist after providing food journals and exercise logs (using a pedometer) to the infectious disease doctor. The endocrinologist ran some tests and determined nothing was wrong, which I found outrageous. I wanted a second opinion, and this endocrinologist found I did have high levels of cortisol, and should be monitored for symptoms of Cushings. At this point I was out of ideas, and assented to see the staff at the weight clinic and to consider surgery.

As mentioned in the post linked at the top, I consulted a nutritionist and she put me on a 900 calorie diet (imagine living on the equivalent of 9 100 calorie yogurts a day). And yet I couldn't drop any weight. My partner was worried about my nutrition, so we decided to try a juicing diet we had seen in a movie.
I will admit I didn't follow the reboot to the letter. I juiced two meals a day and ate one. Two days in I started to feel great - and none of the warned side effects. Then I had a sandwich and it all fell apart. The bread! It was the bread! I went gluten free, and felt great, but there was still something more. I would still get the rash and have other muscle pain or neurological symptoms. Through further elimination I removed dairy, casein (a milk protein) and soy. I've lost 20 pounds so far, and can see the overweight BMI designation not far away, and hopefully the healthy weight one not far after that. With my health back I am overjoyed to be able to exercise again.

I wouldn't say I'm 100% yet, there are still some days I have symptoms and no idea how. Its a work in progress. The most important message I have for other people suffering in any way is to keep fighting. The irony of the matter is you need to fight the hardest when you are feeling your worst. Despite the litany of medical providers I have seen, my partner and I solved this problem ourselves. It was only though self advocacy, study of medical literature and being assertive that I had the meetings I needed to rule out other issues. If you are worried you can't advocate for yourself, or if you don't have the social support system, consider locating a patient advocate. Present as much evidence as you can. I came to every meeting with a written list of family medical concerns, medical concerns I had from birth to the current day (surgeries, broken bones, infectious disease exposure), and photos of the rash. I also began to refuse treatment of the rash, arguing that it was a symptom. As the body's biggest organ the skin can act as a barometer for the whole system. If your doctors aren't giving you the respect you deserve, the time you need, or the support and answers to improve your health, get a second opinion. Remember: they are the expert in their field of medicine, but you are the expert on your body and how you feel. Both deserve respect, neither can exist without the other.

I hope this post is helpful to someone, and you will all forgive my digression from my typical statements about beauty. In truth, being healthy is one of the most beautiful things around.