Travelling Music - MP3 Player is on shuffle

Here's the current track:

It's five o'clock in the morning
And you're just getting in
A knock upon the door
A voice sweet and low says(who is it?)
She opens up the door
And she lets you inAnd never once does she say"where have you been?"

She says,"Hold it,
Are you hungry,
did you eat yet,
Let me hang up your coat now"
And all the time she's smiling
Never raises her voice
It's five o'clock in the morning
And you dn't give it a second thought

The sweetest woman in the world
Could be the meanest woman in the world
If you make her be that way
She might be holding something in
That's really gonna hurt you
One of these fine days

There you are in the hospital
Bandaged from foot to head
In a state of shock
That much from bein' dead
You didn't think your woman
Could do something like that to you
You didn't think she'd got the nerve
Actions speak louder than words
Louder than words
Louder than words
Louder than words,
come on
Come on,baby,baby
If you don't give a damn about me
Come on baby,baby
If you don't really care about me

Packing, getting ready to go home

I started packing to go home. A long process for me that involved washing and then rolling all the clothes, leaving out the clothes for the last few days and gathering together all the souvenirs, gifts and books that I have acquired during the month.

I have a box going to the post office tomorrow to mail home the books.

I have more clothes now than when I came - some I bought, some were gifts. I have to go to WalMart to get a carryon bag for the things that I cannot or will not put in the suitcase that will be checked.

Packing makes me sad and anticipatory at the same time. I am sorry to be leaving my friends, learning about fine art pens, petting the dogs and seeing new places. I love to travel - need it to keep me going even though it is really hard on my body. I am happy to be headed home to see my partner, my daughter and my cat. I can't wait to see the ocean again and sometime in the next few weeks to being married finally to my partner.

I have an early morning flight - tough but it will put me into Logan in the afternoon. I can't wait to fly in over my house, look down and see the beach knowing that in a few minutes I will be home.

Here's to the packing being finished.

Saturday morning

Two steps forward, one step back. That's how it's going here.

Yesterday I awoke with a migraine - I get 3 of these a year but since I was also dehydrated I was trying very hard to drink water with the nausea that the migraine causes. Spent a good portion of the day in the dark with a fan on sleeping the headache away.

In the evening, feeling like I had better try to eat something, we headed out for Vietnamese Pho which was quite tasty and salty. Felt better after that and was encouraged.

Until bedtime....then it began....and I lost all the liquids I had taken in over the course of the day.

Awoke this morning to the same issues...dehydration, dizziness and vomiting....thank god no migraine today...beginning to drink again.....

Favorite Lyrics that I am listening to right now....

You may not see the end of it
But luckily she comes around
It isn't what she talks about
It's just the way she is

(...and she says)Ooh darlin' don't you know
The darkness comes and the darkness goes
Ooh babe why don't you let it go?
Happiness is never how you think it should be so

I mystified the simple life
I covered up with consciousness
I saw myself and broke it down
'Til nothing more was left
She saw the symptoms right away
And spoke to me in poetry
"Sometimes the more you wonder why
The worse it seems to get"

(...and she says)Ooh darlin' don't you know
The darkness comes and the darkness goes
Ooh babe why don't you let it go?
Happiness is never how you think it should be so
But she runs away She runs away...

And then you know comes a time
You need her more than anything
You may belive yours are the wounds
That only she can heal
Then everything will turn around
And she becomes so serious
What she chose to offer you
Was all that you could have

Sick...again

So I am sick....again.....

It's really hot here and I am not doing well. I am dehydrated, feel terrible and am spending more and more time in the bathroom every day and all night long. I really want to enjoy my last days here but all I can do is stay quiet and pray.

Lots of water, gatorade, whatever will stay in and hopefully soon this will calm down.

One Week

One week to go - then I'll be home on my deck looking at the ocean and tanning again. It's been a great trip - full of fun, food, laughter and unfortunate difficulties. I have struggled here to find my baseline and stay there - tending to dehydrate quicker and easier here than at home, hiding when I am not feeling well because I consider it rude to be a guest in someone's home and be sick, and pacing myself (which I always struggle with - even at home).

I miss my kid and my partner. Really miss them. Being apart for so long is a funny thing - it makes you realize all the things that you truly love about the people in your life and it makes you sad that they are not experiencing all the things that you are.

I fly home in one week - a hellacious flight at 6 a.m. I will have my bag of Rainbow Donuts for the flight, my mp3 player and books to read, bonine to take for the airsickness and a seat close to the bathroom. I get into Boston at 4 p.m. and my plan is to eat some rice that night in the big fluffy bed while hanging out with my kid and my guy. Maybe my cat, Lulu, won't be pissed off at me and might make an appearance but usually it takes her about a week to forgive me for leaving her.

I love the visiting out here, the massages, shopping, food and laughter. I could never live here though - too much heat, not enough ocean water for me. I need to be by the water - it makes me feel calm and content. I love the storms on the water, the clear sunny days that last forever, the sand and shells and the deck time spent in the summer.

Here's to the best week of the trip yet & the returning home.

Santa Fe

Definitely you should go if you haven't been there. Nice town - lots of art, great shops, good food and warm weather.

Try not to notice the freakishly large roaches and you'll be fine.

Trust me - I was just there and it was great!

Ode to a Great Sandwich

First of all you need really good italian bread - think sub roll. Add good quality ham and turkey, oil & red wine vinegar, shredded lettuce, onion, fresh tomatoes.

When you get this at your table add more oil & vinegar, pepper and some grated parmesan.

Enjoy!

This so pisses me off

I am reading blogs today and I find an interesting one so I settle in to read the past posts. I find a post that is interesting in some aspects and I read the comments to find that someone has listed my blog and implied that I am a person who "wants" to be sick.

Why would someone who doesn't know me, doesn't know anything about where I've been or been through and hasn't ever even spoken to me decide that they "know" this about me? Because people make assumptions. They read one thing, one diagnosis, and they allow that to define you.

In my case it seems that Fibromyalgia is the diagnosis that this person decided defined me. Which is hysterical since I got that diagnosis in 1997! I haven't had a problem with this in 8 years. I take no medication for this and I don't go to ER's or doctors looking for pain meds. I don't use it to sit at home, opt out of life or whine about my lot in life.

I know that there are people who relish being sick - who can't wait to have the attention and will use anything for an excuse so they don't have to work, go to school, raise their children, etc.

I assure you I am not one of them.

Hammered

This weekend I helped some friends with a show in Prescott, AZ. I am not sure if I was a help or a hinderance since I am new to this and spent alot of time trying to be helpful, not in the way.

Today I am sore, really sore and tired. I forget the toll on the body that travel and activity takes on me. I slept really well, had another nap and still I am sitting here feeling like I crawled out of the depths of the earth.

But....I would do it all again today if I could. I would get up before dawn, ride in the back seat with a cup of iced coffee, carry things and set up tables or chairs or set out the pens, walk for food/drinks/errands and talk to people. Why? Because I cannot do this full-time, because I spend 3/4 or more of the year housebound (and sometimes bedbound) and because people are really cool.

In Prescott there is a town square ringed on all sides by stores. If you look down the street there is the most amazing vista of a mountain framed by an old-fashioned western town. The temperatures were in the 80's with a nice breeze. We set up the incredible pens that my friends hand make. I met some great people - some were other vendors and some were customers.

There was a great guy selling spice mixes for dips - we joked and laughed all weekend and yes, I bought a bunch of those packets. How could I not?

Another girl drove from Utah and made the most amazing jewellry with natural stones. She was really sweet and I hope she made enough money to get home to her horse and home.

Bruce & his wife were friends of my friend and they supplied me with some tasty bakery products over the weekend. Nice people.

Customers came from all over including some from back home which is always fun. A nice couple bought a pen from Blackstone Valley. Another woman at the end of the day was nice and a pleasant way to end the day.

I am in for a bigger busier show in Santa Fe next weekend. I am resting to gear up.
Here's to more interesting people in a new place.

Favorite Foods

My favorite foods (in no particular order and not a complete list):

Strawberries, raspberries, blackberries
Cantaloupe
Pineapple
Dates
Pasta - prefer creamy sauces and fresh pasta
Potatoes
Avocado
Tomatoes
Asparagus
Snow Peas
Sugar Snap Peas

Cheeses - this is gonna be tough -not a complete list, just a start:
Real Parmesan
Humboldt Fog (ashed goat cheese from CA)
Brie
L'edel de Cleron
Capri Goat Logs - really like the garlic & herbs
Aged Gouda
Grafton 4 yr cheddar
Buffalo Mozzarella

We'll call this section - SUGAR since that's what it really is about:

Pie - homemade, it's a food group
Cake - Love the cupcakes from Party Favors in Brookline, MA, also Montilio's and Konditormeister make great cake

Foods that I need when I am not feeling great:

tapioca pudding or arborio rice pudding
tea - I love Yorkshire Gold brand tea
San Pellegrino Limonata
bagels or good bread for toast
rice

Steak - big red meat eater now - love it!
Chicken
Seafood - lobster, shrimp, crab legs

Tell me about your favorite foods.

Laurie Colwin

I miss Laurie Colwin. For those of you who are unfamiliar with her, she was a columist for Gourmet in the 90's and wrote two food books that I love (Home Cooking and More Home Cooking). She wrote the best columns and her recipes are great. Unfortunately she passed away unexpectedly at a young age.

If you are into food and enjoy reading about it, please check out her books.

A Day Living Like This (with history)

I am not a good patient. I have not accepted that this condition is a part of my life - even though I went through a year of every medication there is and of being tubed, scoped and tested, another year after that living with it. I have been told by the best that this is here to stay. Still I don't believe it and don't want to accept it.

Here's the history:

In September, 2005 I had my gallbladder removed. The surgery went well and I recovered well from it. I went to San Francisco to visit friends and felt great. A month later I had adhesions removed from my small intestine and stomach wall. These were caused by a ruptured appendix years earlier and they were giving me discomfort. This surgery was an open abdominal procedure and one week after the surgery I was in the ER at 2 a.m. with a small bowel obstruction. That was the surgery that I didn't recover from - I know I spent time in the ICU. I believed it to be a day - my family says it was a week. Don't really remember it at all. When I got to the Med-Surg floor I was sicker than I had ever been in my life. I do remember not being able to drink or eat and throwing the Surgical team out of my room one day so I could have 5 minutes where someone wasn't poking me or changing my dressing. I feel badly about that. From my records there is some discrepancy over whether or not I had C-Difficile - I think I may have given how sick I was. I had an infection in my incision and spent 17 days in the hospital. I never stopped having diarrhea, it never changed in intensity - I have between 10 to 30 trips a day. Every day.

For 3 months I was completely bed bound except for the trips to the bathroom. I couldn't hold down any food at all and had a hard time with fluids. I crawled into my primary doctor's office at one point so sick and so weak that it's a wonder I didn't get admitted to the hospital. In January I began eating nothing but grapefruits and grapefruit juice. And in February with the help of months of Compazine and a some sunshine on a cruise that I had no business being on, I finally was able to start to eat. The diarrhea continued, unabated. In June I was hospitalized and had a colonoscopy which was normal except for a bunch of polyps and some inflammation.

Medications that we tried are many - Lomotil 3 times (no change), Immodium (vomiting), Pamine Forte (severe eye pain), Cholestyramine and Colestid 3 times (vomiting, stomach pain), Tincture of Opium (hives),Entocort EC (stomach pain and no change), Octreotide (stomach pain). We also added metamucil which caused me to writhe in pain so severely that I never could bring myself to try it again. I get the same crazy writhing pain from vegetables, beans, nuts, seeds, ice cream. I am truly housebound by this condition for the most part - a couple of times a year I get stir-crazy and then I travel and pay the consequences.

So here's today - I get up really early to go with my friends to work a show. I drink my coffee, eat my breakfast pastry while riding to the show. After arriving to the show I visit the ladies room and then nothing after that for hours which is not normal for me. So I start deluding myself into believing that I am getting better, that today is the day that my body is going to heal itself and I will be able to live a normal life again. And even though I know rationally that this cannot and will not happen to me I want so badly to believe it. Then it happens - that moment when it all comes crashing back and I am forced to face the fact that today is just like any other day and I am left feeling like I fell from some great height onto concrete.

It's not that I am stupid. It is incomprehensible to me that this is my reality and I, who has such faith in Western Medicine, realize that there are limitations to what medical science can do for me. I haven't been able to fully embrace any holistic remedies because how can they work when medications designed and tested for my disorder have failed? I do go for massages when I can and I do tai chi and yoga. Meditation and guided imagery every day. These balance me and make me feel centered and whole but they do nothing for the diarrhea.

I have other conditions - asthma, fibromyalgia, traumatic brain injury from closed head trauma which caused neck disc herniations with nerve entrapment. I just had a cancer scare and underwent surgery to have my ovaries removed. But all of these have always been treated successfully and I have been able to bounce back.

Why didn't it happen for me this time?

Now I know you are reading this and you are saying "what's she doing drinking coffee?" and "get off the sugar". Believe me, I have done it all - gave up coffee for 7 months - no caffeine, no decaf, no nothing. I was not a happy girl and it didn't change a thing. And same for the sugar - I also did Gluten Free, Dairy Free, added Probiotics for months at a time and then eventually graduated to the "No Food Diet" which is where I spend alot of my days. It's easier - don't eat because it's not worth it. Drinking liquids - water, juice or anything is difficult too. And the more times I run to the bathroom the less I want anything to keep that cycle going.

I've lost 100 lbs now. I can eat whatever I want as long as it is not anything healthy - no high fiber, no beans, no nuts/seeds/dried fruit, no dairy such as ice cream. I can eat easy things - rice, potatoes, chicken or steak, french fries, tapioca pudding, greek yogurt. My body doesn't know the difference - none of it stays with me for very long. I drink electrolyte enhanced water because I lose my potassium levels easily. I limit my coffee to one cup a day and I try to drink things like limeade or lemonade occasionally.

Recently I was hospitalized again for dehydration. I know the signs now and know when to call the doctor or head to the ER. I know not to wait until I am passing out (been there and done that). I told you I am not a good patient. I am stubborn, defiant and keep trying to live life as I used to. I know that the dehydration is preventable and I would love to prevent having it ever again but sometimes my condition is so bad that I cannot hold even water down - then I know it's a matter of time. When I get the dizziness, the headache, cold feet & hands, aching shins - this time around I even had really bad stomach cramps too. It's the worst feeling in the world. This time I got lucky - one night, lots of fluids, some Cipro for a brewing UTI and my primary came in & got me discharged (he told them at admit that I would be trying to get out of the hospital and he was right). My blood pressure was still postural but I was released. I drank and drank all week but was still moderately dehydrated when it was time to fly to Arizona. I got on the plane - possibly a bad judgment call on my part and arrived to 100+ heat. A rough couple of days and a scare with heat exhaustion then things turned around. No sitting out in the sun like at home, no going out at the worst part of the day, lots of electrolyte enhanced water and potassium supplements and I am hanging in there.

Until today. Today I had to face my limitations again and it was hard. I am still trying to find a balance between what I can do and what I would like to do. I would love to go back to work, leave the house, shop for groceries, do laundry. I can't do those things on most days. If I have a doctor's appointment then I stop all food and water for two days beforehand so I can get to the appointment and through the appointment without having to run for the bathroom. I can't stand for long anymore due to muscle weakness. My hair falls out and according to a nutritionist that I saw I don't eat enough calories in a day. I am working on that when I can - eating red meat, cheese, yogurt, nut butters on crackers - but most days I fail at this task.

So starting now I am going to start taking it one day at a time and I am trying not to wait for a miraculous recovery in the meantime.

Meg

Early Morning

Off to Prescott, AZ this morning with friends who are working today. It's early - I got up at 4 a.m. and I am ready to go. Made the iced coffee, toasted the breakfast and soon I will be sitting in the back seat with my mp3 player on. God I hope there is a bathroom along the way!

Sun is just coming out now - 6:09 a.m.

More tonight when I return....

First Post - New Blogger

In Arizona, eating strawberry and chocolate satin pie slices and introducing myself.

I am a woman who deals with a chronic gastrointestional disorder, Chronic Bile Salts Diarrhea with Malabsorption, which was the gift from my three surgeries in 2005. Since then I have become a "patient", albeit not a very good one, and I have a tendency to spend alot of time in hospitals annoying the crap out of my doctor by getting dehydrated. So I am prone to comment on my hospital experiences (generally I am clawing my way out of there within hours of being admitted) and my doctors, who are fantastic and deserve better patients than me.

I am also a woman who worked for over ten years in the natural food industry, primarily with specialty gourmet products and also for ten years in restaurants. I am a foodie, love to talk about food and sometimes I actually eat some food.

Then there's the ocean - it's right outside my house and I spend alot of time out on the deck watching the water. It's amazing to me to live here.

My goals for this blog - talk about things that happen so I stay sane, talk about food for fun and share humorous thoughts with anyone who stops by. I will share books that I read - next up for me is a book called White Coat: Becoming a Doctor at Harvard Medical School which since I am from Boston is a must read about the Holy Grail of med schools.

I hope you will enjoy! For now I am going back to that pie....