Random gifts

Gastroparesis, in least in the way I experience it, seems so random. Today was one of those days, which are few and far between, when I have felt hungry for every meal, and am eagerly awaiting the next one. (I am making split pea soup as I write).
Although I am about to contradict that I said it is "random", I am realizing it seems that every Wednesday I am hungry. Hmmmm. . . Often Friday I have the "stuck" feeling. Hmmm, hmmm and hmmm again! What is it about Wednesdays that causes a better flow? Perhaps I can put the credit on NIA; the wonderful dance/ yoga/ exercise class I do each Wednesday morning that focuses on both the  mind and the body. The way I move in that class, in circular and creative ways, is a much different movement than my usual run or walk. Or maybe I should attribute it to Mike's music from the night before: Tuesday nights I go watch my talented husband either play the drums or vibraphone at a local coffee shop; a relaxing and mindless activity. Or perhaps I feel good on Wednesday as it is "hump day" and I have made it through half of the work week. But then this would not make sense as to why, often on Fridays, my stomach feels "stuck". An overload from the week? Are there trends other days? I would also generalize that Saturdays and Mondays are more likely to be "stuck" days while Sundays seem to be better "flowing". This is odd, and how much is this completely random, and how much is the likelihood there are patterns?
This all being said you may see why is is difficult to explain to people what I can eat. Wednesdays I may be able to have a salad dotted with colorful accouterments, or a few bites of pasta and sauce, while Friday may be veggie broth with a trace of carrots and spinach.
This is also why I am hesitant to make reservations at a restaurant, or meal plans with friends and family. I never know, until that day, what my stomach will be.
While I used to seek total control over my body when experiencing an eating disorder, I now must accept that I have little control. This is probably a good lesson for me, but certainly not easy. My personality type is more one of seeking control over things. While it is hard to see the positive aspects of gastroparesis, perhaps it is giving me the gift of flexibility. 

Vertiginous Spiral of Guilt

It is a lovely evening, as I sit with my sister Sarah, my nephew Aggie, and a friend of Sarah’s from college, Stella, and her husband and young daughter. We are at Duende, a restaurant in Burlington. We are enjoying the live music being played by my husband Mike and company, as we sit around a table talking. The waiter comes to the table, bringing along the menus. He announces that tonight the specialty is Ethiopian food.

He passes out the menus to each of us, and I watch as the adults open the menu and “oooh” and “ahh” over the plethora of unique choices. I choose not to open my menu, knowing tonight I will not be able to order any of this food. My stomach is in what I call “recovery”: when it is recovering from a “stuck” episode. That means I must eat with care, to keep it improving and to have it return to my normalcy.

I knew that when I suggested we go here, I would not be able to eat. Two days ago, after returning from a long car ride and trip, I was very hungry, much to my likeness. With some elan, I had made myself my favorite salad, and had a few bites of Mike’s cheesy pizza.  Perhaps the salad I made was too large; or that it contained two much cheese or nuts. The next day I woke up with that ugly “hungover” stomach feeling, with some nauseous feelings and discomfort. Now, two days later, I was still being careful not to upset this lymphatic organ of mine.

The group discussed what to order. It was decided a smorgasbord of items would be ordered, as the group was eager to try a variety of the inimitable foods.

“Since there are 5 of us adults and 2 children, we could probably order 5 main courses and a few appetizers,” suggested Stella.

I spoke up, “Actually I am okay- I am not going to have anything,” I said.

Slightly addled, Stella glanced up from her menu. “Oh, okay? Are you sure?”

“Yes,” I responded, “Thank you”.

It is in moments like these, with people I do not know so well, that I debate whether to speak up and become limpid about my digestive condition, or to remain quiet, with a cryptic silence.

Suddenly, a memory dawned on me that lead me to be fashed. It was 11 years earlier. Sarah and her partner were living in cooperative housing in Somerville Massachusetts with a bunch of their fellow recent college graduates.   I had spent the evening at their apartment, socializing and participating in the evening meal.

The next day, Sarah called me. “Rae,” she said, using my middle hypocorism,” Last night after you left Stella asked me if you are anorexic. I did not know how to answer.”

I can’t recall what I said, or how I reacted that summer day. I do recall feeling embarrassed, somewhat shocked and unsure where to go from there.

And now, here I was, 11 years later, still thin and refusing to order any food. “What did Stella think?” I wondered. Although a saga of event, unknown to her, had occurred in the past decade, here we were, in the same boat. “Was she thinking and wondering if I am still anorexic; that the eating disorder is a sempiternal state?” I thought.  

Of course, I know I no longer have an eating disorder. And should I really care what other people think? Moreover, I should not assume what other people think, either.

This situation was one of those times I was lead into a vertiginous spiral of guilt. Was having gastroparesis my fault? If I had not deprived myself of food for so many years, would my current digestion be so screwed up?

I tell myself I will never know the answer. I tell myself it is irrelevant; it does not matter. One can only learn from one’s mistakes.

I lean back in my chair, order a hot cider, and enjoy the music.

Hello Peanut Butter

3/7/11

Eating some peanut butter today. Wow, it is amazingly good. I do not think I have eaten peanut butter for over a year. Maybe it has been two years. It is one of those items I have crossed off my list as foods that tend to lead to the “stuck stomach”. But today, I was craving it so badly, and decided to see if I could handle a small amount. I find that I can handle a small amount of most foods. I would have loved to eat your classic Pb & J sandwich, but this was not an option. All those carbs and fat at once would be a recipe for disaster. So instead, I had a few dates stuffed with peanut butter, with a dollop of raspberry jam on top. Dates are easily digested by me, so this seemed like a safer bet. It is strange to me that as a child I could eat a whole sandwich, and it would go down fine, and then I could eat dinner in a few hours. Can my mind, remembering this, train my nerves to shift, and create this lovely phenomenon again? It amazes me when I see people eating sandwiches at lunch, whether it be PB & J, or a meat and cheese and vegetable sandwich or other. I think, “Oh my god, if I ate that, I would not be hungry again for days!” And there they are, munching on potato chips on the side, not realizing (it my eyes) how lucky they are. (That being said, I have never been a lover of sandwiches or potato chips).

Along with peanut butter, there are several other foods and meals I shy away from, as they have lead to Gastroparesis attacks in the past. Again, I could probably have two or three bites of these foods, but that is not so easy to do. These food/ meals are as follows:

Harder to digest foods:

·         Pizza, calzones, or anything of the like

·         Pasta

·         Baked goods: *muffins, scones, croissants, cookies, brownies

·         Fried foods: French fries, doughnuts

·         Desserts: most contain too much fat for me to digest (including ice cream)

·         Breads: bagels, toast, sandwiches

·         Fondue, or anything with a lot of cheese

·         Rice in medium to high quantities

·         Any kind of nut butter

·         Any high fat dairy product

·         Raw fruits (except maybe melons or grapes)

·         Other random foods that upset my Gastroparesis: papaya, avocado (probably due to high fat), seitan, tempeh

Easier to digest foods/ foods that seem to stimulate digestion:

·         Cooked or pureed vegetables

·         Cooked fruits and dates

·         Vinegars

·         Mustards

·         Garlic

·         Small salads

·         Pureed tofu

·         Eggs (hard boiled, over-easy, in soufflés or other!)

·         Hot liquids

*I do eat ½ of homemade muffins sometimes, but I heat them up with water and mash them.

Wow, in writing this, it appears I can eat so little. I used to feel like that, but I have become quite the creative cook. And remember, I can eat the foods listed in “harder to digest” just in small amounts, and when I feel my digestion is flowing.

Here are two recipes I make often.

Gastroparesis recipes:

GP  Greek Soup

Ingredients:

½ chopped onion

1-2 cloves minced garlic

2-3 diced sun dried tomatoes

1-2 chopped artichokes

Small handful of spinach

1 cup vegetable broth

¼ cup balsamic vinegar

2 T. nutritional yeast (optional)

Method:  1) spray a tiny bit of olive oil onto a pan, Turn stove to medium. Add garlic and onion d sauté for 3 – 5 minutes. 2) Add sun dried tomatoes, artichokes and vegetable broth. Cook for 5 minutes over medium heat. 3) Add spinach, balsamic vinegar and nutritional yeast. Cook another 5 minutes. 4) Salt and pepper to your liking and enjoy!  

Pureed Tofu

Ingredients:

½ cup tofu

1 tsp. vegetable stock

2 T. tomato paste

2 T. mustard

2 cloves minced garlic

2 T. Green Goddess salad dressing (optional)

2 T. nutritional yeast (optional)

Salt and pepper

Method: 1)  Boil tofu in water with vegetable stock for about 10-14 minutes until well cooked. 2) Place in immersion blender with remaining ingredients. 3) Blend away! Add more or less of additives to your liking. 4) Warm up again and enjoy.   

Getting "better"

People often ask me how my stomach is doing. I often say, "It is doing much better than it was a year or so ago, thanks for asking". The follow up question I often get then is "So you can eat whatever you want now when your digestion feels good?" Unfortunetly, the answer to this is a big fat "no". It has made me realize that, yes, my digestion is improving, but not ultimately in the way I wish it would. When my digestion is having a better day, it is true I can eat whatever I want, in small portions. And when I say "small", I mean "small". Perhaps for you a small portion size of pizza would be a slice or two. For me, it is a measly two or three bites. And yes, maybe I can have a cookie. Not a whole cookie, but again, one or two bites.
The other day I went to a benefit wine tasting with a good friend. Along with the wine, a sample of baked dessert goods were being offered by a bakery I love, "Mirabelles". I hesitated before taking a plate of the yumminess. My friend asked, "Can you eat anything of that?" I said, "No, and I don't really like chocolate anyhow" (unless it is in liquid form). My friend sighed, and pushed her plate away, seemingly feeling guilty she could enjoy such pleasures.
Later I realized I wish I had responded differently. Sure, I could have eating a chocolate macoroon and a cinnamon cookie. But the consequnces? Not worth it. I certainly would not be hungry for dinner a few hours later and maybe not even for breakfast the next morning. I would much rather eat something I know I can digest, then take the risk of eating something that could get "stuck" for 12 hours or much more.
Of course, another aspect helping my digestion is the digestive enzymes I take at every meal and the drug, "motilium". These both help, but are not panaceas. And I have to be careful of the motilium dosage as if it is the right time of the month, my breasts become swollen and I lactate like a young mother. It would be a bit hard to explain why I have wet nipple marks on my shirt to my coworkers without having a baby.
Of course, that could be a whole other blog posting. . ."my experience with producing breast milk without actually having a child". . . . Maybe I should consider myself lucky. How many other women get to practice pumping before they actually have a kid?!

Needles

Dec 18^th, 2009: Needles

Ever since I can recall, I have been afraid of needles. Or perhaps it is not the actual needles, but the feeling that passes over me when they are suck into my body. Countless times I have felt a wave of nausea come over me, and I start to feel very uncomfortable. Then, I faint. I have so many stories of fainting, starting with when I was in kindergarten and fainted in front of my whole class (That was due to a high fever, however, not needles).

So you can imagine how surprised my family was when I told them I was going to start doing acupuncture. “That’s ironic,” my sister said, “Don’ t you hate needles?”

At this point in the game of gastroparesis, I was willing to try anything. I did some searching on the internet, and came across a woman who looked well qualified and experienced. I was nervous on the first visit. As I took off my shoes outside of the waiting room, I could feel myself growing uneasy. I felt warm and slightly queasy.  After waiting a few moments and leafing through eastern health books, Kayla called me into the treatment room. She asked me all sorts of questions: some were like any health practioner would ask such as “What is your (medical) family history?” and “What illnesses, surgeries ect have you had?” Others were out of the ordinary for my Western upbringing. Questions such as, “When do you feel you have the most energy; morning, noon, or night?” And “What sorts of foods do you have a tendency to crave?” And rather than checking my reflexes or my height and weight, Kayla looked at my tongue more carefully than I ever have looked at it, and took copious notes on its appearance. As we went through this introduction, I watched the clock tick by. Maybe, I thought, there would not be any needles today. Perhaps this first visit would just be information gathering. As if Kayla was reading my thoughts she said, “Okay, if you want to get up on the table, we can begin the treatment”.

I climbed up on the table. “Do you like it to be quiet or have music while you have this done?” She asked. “Quiet is fine, “I responded. I laid back on the table. “I am going to start by putting some on your head,” she said. I cringed saying, “Actually, if you don’t mind, I would rather not know where you will be sticking them.” “No problem,” She responded, kindly.  Asking me to alter my clothing some, she proceeded to stick needles into my arms, mid chest area, stomach, feet, and legs. Usually I would feel a gentle prick, but sometimes an electrifying shock went through my body. “Oooooooh!!!!!!” I would call out. “Sorry,” she would say, “Some spots are more sensitive than others”. After she placed in the ballpark range of 20 to 30 needles in me she said in a rather upbeat tone, “Okay, see you in 20 minutes!” I think she saw my eyes grow wide. “Do you want me to come back half way through and see how you are doing?” She inquired. “Yes, please,” I said, with perhaps too much desperation in my voice. I could not imagine lying in a room by myself with that many of the oh-so-feared needles sticking in me!

Am I Okay?

Dec. 9, 2009: “Am I Okay?”

I cancelled my gastric emptying test that was scheduled for Monday. About 6 months ago, I had a barium swallow, which showed nothing out of the ordinary. I had expected this, as when I went in, I could feel that my stomach was “flowing” normally. After doing some research over the internet and talking to another person with Gastroparesis, I decided it was not worth the $300 dollars plus out of my health savings account. From what I could tell from my research, there was nothing that the gastric emptying test would show that the barium swallow did not. It was imply to confirm the diagnosis. I felt strongly that my daily experience yielded much more weight on the diagnosis than any test. But there was a part of me questioning if it was the right thing to do.

I told Mike I had cancelled it.

“Okay Sweetie,” he replied simply.

“Well, what do you think? What is your opinion? Was that a good idea?”

He paused, looking to the side thoughtfully. “Whatever you want is fine,” he said, not giving me any insight into his turning wheels.

I pressed more. “But do you think it was okay for me to cancel it?”

Finally, the truth: “I don’t know. I mean, a part of me wonders “what if you have something more serious?” Isn’t the test to rule that out, too? I know it is very unlikely you have a tumor, but what if you do? I certainly believe in early detection and know how much we would regret it if we found out down the road we did not identify something earlier. “

Wow. I sat back in my chair staring at Mike. I had not realized he was harboring some of my same fears.

“You’ve been thinking about this?” I asked inanely.

“Of course I have!” he responded. I must admit that selfishly it made me feel better that I was not alone in my uneasiness. Since this episode of GP began, the thought of a more serious illness or disease loomed in the back corners of my mind. When I felt nothing was moving in my stomach, when I felt there was a weight in my between my breasts, I wondered if a tumor was slowly growing; blocking food and causing discomfort. Or, what if it was one of those many autoimmune disorders? I was rather familiar with chronic illnesses from my work as a medical social worker, and from episodes of the popular t.v. show “House”. I could almost hear Dr. House saying (about me) “Maybe it’s Lupus”. Or something more obscure like “Hirschsprung’s disorder” or “Whipple’s Disease”.  I pictured myself in a hospital room, bored and thinking about how much I took my “normal” life for granted: going to work, cleaning my apartment, simply enjoying home.  I knew I was visualizing the worst possible scenario, but maybe it is okay to prepare for that very small possibility?

Also, it is true that if I did not have this gastric emptying test now, and had it later as symptoms worsened, that I would never forgive myself if they actually did find something (like a tumor) , that had been growing slowly a this time. Then my doctor, waving her finger at me, could point out, “I scheduled that test for you 6 months ago and you canceled it! What were you thinking?!” 

So all this contemplation and writing to update you that, yes, I cancelled the gastric emptying test. I would rather spend my money on treatments. Would I have cancelled it if money was not an issue? I am not sure, but the cost definitely played a role in my decision making. As the healthcare debate dwindles on in this country. . .

So the question continues, “Am I okay?”

This question throbs in my head each time I eat. Last night I ate what I would consider a risky meal. It was a green salad with tomatoes and caramelized onions. Along side of the salad was some kale and artichoke dip with crackers. Very precarious in the sense that it contained raw vegetables, complex carbohydrates and cheese. What was I thinking? I had learned time and time again that moderation is crucial. As I ate and chewed. . . .chewed, chewed, chewed, I would stop and become more conscientious of my “flow”. “Am I okay??” “Is the food going down?”

I hear about people that cannot stop eating as they love what they are putting in their mouth. In fact, all of us have experienced that, myself included!! But now I do not feel it is a choice that I can at more for the pleasure of enjoying the food. It literally feels as if sometimes I have just one too many bites of a meal and that is what leads to being stuck. . .for days.

So I ask myself, “Am I okay??”  

two crackers

It is almost one week after Thanksgiving. I am on week 7 of experiencing this particular bout of Gastroparesis. As I have said a thousand times before, when this episode began back in mid- October, I had no idea it would last so long. It is getting better week by week. When I think back to where I was on my birthday, October 31rst, I could barely eat at all and was restricted to liquids. Now at least I have felt hungry a few times and have heard some stomach rumblings. My current difficulty is that when I feel hungry I want so bad to eat foods I have been missing and then this leads to a setback. I feel I take one step forward, and then two steps back. I have gone through this twice this week (desiring foods I am missing) and I need to come up with a plan not to let it occur again. For example, on Saturday we drove back to Vermont from Massachusetts. As I mentioned, I had taken it easy over Thanksgiving and my whole stay in Massachusetts to let my digestion return to normalcy. And sure enough, driving back to Vermont, I commented with glee to Mike, “I’m hungry”! He looked at me with wide eyes, “You are??!” he responded. “What are you going to have for dinner?” he asked.

Despite his encouraging me not to, I decided to have a salad. Salads, of all varieties, are one of my favorite meals. It being November, I wanted to make one of my most liked Autumn selections: spinach with dried cranberries, caramelized onions, maple pecans, goat cheese, and a warm garlic vinaigrette.”Are you sure you want to eat that?” Mike asked me again.  “Yes!” I nearly shouted. “I have not had a salad for six weeks and I want one soooooo badly!” I exclaimed.

And indeed it was scrumptious. I oooed and awed at each bite, commenting I had forgotten what I had missed out on. It was certainly the best meal I have had in weeks.  I could feel the meal going down well, to my absolute delight.

But I paid the price. The next day, hoping for continued normalcy, I ate three meals ending with a dinner of roasted root vegetables and Greek Moussaka. As opposed to last night meal, I could tell this one did not go down so well. And sure enough, Monday morning I could feel the “stuckness” and my daily diet consisted of a yogurt and soup broth, neither which I felt like I really needed: I just ate them out of the inclination that I should at least consume some calories each day.

However, I said I am taking one step forward and two steps back. On Tuesday, by 2 p.m. (breakfast was juice and a latte) I felt some stomach grumblings. I spoon fed myself a pineapple smoothie. Just two hours later(!) there was some more grumblings. Impressed, I slowly munched on a few animal crackers. When it came around to dinner time, I decided to have cooked spinach with olives, sun dried tomatoes, garlic and balsamic vinegar. This may have gone down okay. However, I daringly added two “Digestivs” (crackers from England, a sort of cross between a graham cracker and a whole grain cracker) and two slices of extra sharp Vermont cheddar. As usual, Mike looked over at me and cautiously said, “Sweetie, are you sure you’re not overdoing it?”  I am not sure what I responded, but I admit, I was thinking along the same lines. Sure enough, an hour later feeling bloated and slightly nauseous, I said to Mike, “Shoot! I really need to be careful even when my stomach does start to feel normal again!” He looked over at me and laughed, with that “I told you so look”.

Now it is the next day and after drinking an eggnog latte and feeling more than slightly nauseous  and remarkably bloated, I am preparing myself for a full liquid diet.= for several weeks. I am beginning to realize I am jumping too quickly to solid foods and high fatty foods. To return to more consistent digestive normalcy, I need to add foods into my diet more slowly. And that is why I titled this chapter “two crackers”. Two crackers are sitting in my stomach (maybe playing with some cheddar) not knowing where to go, or how long they will stay. . . .