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. . . .

Food brings us together

Week 7: Two Crackers (with cheese)

Well, Thanksgiving has passed; the biggest eating day of the year for the United States. On the days leading up to it, I could tell things were still not “right” (pertaining to my digestion of course). Mike & I were heading down to MA to be with my family. Since I had created a list of “trigger” foods and “trigger” situations, I was well aware the travel was one of them. Indeed the day we left there was some small amounts of growling, but as we approached the state boarder I could tell that the four hour car ride was leading to stagnation. I mentally prepared myself for Thanksgiving. I pictured myself eating some squash, flavored with some fresh rosemary and a dash of salt and pepper. With all the people at the table and the commotion, I figured no one would notice.

I am not sure why I care if people notice. It is true, I feel some shame about having Gastroparesis, as I have taken it under my wing that a part of this must be my fault.  It is true that when I go to do research on the web about GP, one of the causes is a history of eating disorders. For about two years in college I denied my body the right amount of food, and exercised profusely, as my body wasted away. Surely this was related, as with several other factors.

Anyhow, back to Thanksgiving. Last month, I had shared with my family information about my new diagnosis. I felt relieved that they were all very supportive and understanding. No more did I need to give strange reasoning for my picky and unpredictable eating patterns. Before, I would say, “My stomach is f***ed up”, now I can say, “I have a medical condition. I have Gastroparesis.” I was afraid my family thought I still suffered from an eating disorder. This made me upset, because I felt so far and removed from having an eating disorder. That young woman who had an eating disorder seemed juvenile, weak and a million miles away. I was so confident that I had moved away from controlling my caloric intake and caring about body image. As a matter of fact, I wanted to gain weight! (and still do) I was so sick of people commenting on how thin I was (or am). I feel like yelling, “It is not by choice! I cannot eat like a normal person! Oh how I would love to eat cheese endlessly, to have another slice of pizza, to indulge in chocolate coated almonds. “

So yes, back to the Thanksgiving meal. I did start to feel somewhat down as the Thanksgiving day dragged on. Seeing my mother working so hard in the kitchen, making each item by scratch, made my body feel envy.  She always overdoes it;  without doubt we end up witha plethora of leftovers. I wanted to sit down with a steaming plate filled with a mound of mashed potatoes, of fresh garden green beans, whipped squash, a roll with butter dripping off, with my Mom’s slightly sour, yet delightful cranberry sauce, with my contribution of sweet potato pie, stuffing, and of course our traditional walnut loaf with burgundy sauce.  (Then pie! Pecan pie!)Despite mindfully preparing myself that I would only be able to digest a little, it was still hard to imagine not enjoying a Thanksgiving meal as one is supposed to.

One lesson I have learned with Gastroparesis, is that there is so much more to a meal than the food. Now I have more attention to be focused on my lovely family, and out delightful conversations. I have made a point with this diagnosis, to not avoid situations that involve food. Food brings families and friends together to share conversation, laughter and traditions. I was not going to let myself miss out of this important piece of life! This piece of life is more important than a piece of pie.

A day in the life of gastroparesis

DAY FOUR          

Monday morning

It is Monday. I am back home in Vermont. I wake up and lay still. Do I feel anything? Is anything moving? After being awake from 4 a.m. to 4:3 0 with many gurgling noises and practicing deep breathing, I was hopeful.

It is late. 8:10 a.m. Usually I get up an 6:45 a.m. so I can go for a hour long walk before work. Today I choose to sleep in. I shower quickly and pull out some clothes to wear to work. I continue to feel a sense of hope.  Although I do not hear loud gurgles coming from my mid-area I feel slightly lethargic, like I need energy from food to pick me up.

All weekend I told myself, “By Monday you’ll be okay. Your stomach will be back to normal”. And now Monday was here! I could enjoy food again; my morning muesli, by midday my delicious creamy yogurt. . .a banana. Mmmm. And I was not even dreaming of dinner yet. With fresh local vegetable from our farm share there was plenty in our refrigerator to choose from.

After barely eating for three days (with absolutely no appetite), I decided I better start out with something easy. Kindergarten style for my stomach to digest. Referring to the “low-residue/ fiber” information sheet I had, I decided cream of wheat should be safe. I decided to make it with soy milk for added protein. Oh, how I wanted to add raisins!  I really do love raisins. “No” I told myself, “start easy on yourself”. But, I thought, I could add some nutmeg for a bit more flavor!

I heated up the soy milk in the microwave and mixed it in with the cereal. I decided, to be on the safe side, to give myself a half serving. I figured if I felt hungry in an hour or two, I could eat something else small and so on. I placed it in a to-go container, kissed Mike goodbye and headed out to the car.

The car was covered in frost! This was the first time I had seen that this fall. After clearing off the car, I got in. As I wanted to eat my breakfast warm, I slowly grabbed my spoon dipped it carefully into the gooey grain and spooned it into my mouth. It was good.

Was my stomach muscles triggered? Did they freeze as this cereal went down my throat, into my esophagus and into my stomach?  By the time I had arrived at work, about seven minutes later, I was feeling uncertain.  My stomach did not seem to be sensing that it was supposed to do anything. Dullness and quiet followed.

Monday afternoon

I arrive home about 1 p.m. to drop off the car for Mike. I have yet to hear a peep from below. My belly that is.  By now all hope is lost. I guess Monday will not be the day to eat again. How can this be, I think! I ate so little since Friday. Why is it not going down? To give an example of this diet that yields no hunger:

FRIDAY: At noon at ½ of a mashed banana and 2 dates. Dinner included a few bites of cabbage and some sweet potato, a few bites of soufflé.

SATURDAY: Stop at Starbucks. . Vanilla latte. Dinner- ½ cup vegetable broth; hot maple milk.

SUNDAY: Starbucks again . . . same beverage. Dinner ½ cup vegetable broth blended with 2 tablespoons tofu.

Not to mention that my energy levels have remained the same. Therefore I walked for over one hour each day. . . Still no rumblings.

So back to Monday at 1 p.m. I come home. I want my yogurt. I want food. I want to eat! But I know it will just get worse if I do. I know I need to be patient, to not force hunger to arrive. I feel so angry. I just want to bury myself in my room and cry. But I know my life must continue. I can take control of this, I am in control! But right now I just feel sad. As Mike gathers his belongings and gets ready to leave I express my frustration out loud. “How is this possible?!” I yell. “I do not understand what is wrong with me!” Mike gently takes my hands in his. “Sweetie, it’s okay,” he says. “One moment at a time.” “But is so annoying”, I yell in return, near tears. “It’s okay, remember you can’t have 100% control of this”. “But I do have control!” I reply. “Yes, you have some control, but not 100%”, he repeats sympathetically. I put a piece of water melon gum in my mouth.

Monday night

It is 5:30 and I have arrived home from work. Since I did not need a lunch break, I took an hour to go for walk around town. It was a gorgeous autumn day, rather warm, with the scent of fallen leaves in the air. I felt fine on the walk, my energy flowing, my feet moving. I tried not to think of my digestion, to distract myself with thoughts of my work or upcoming birthday party plans, but my mind kept shifting back to my middle.

I am thinking that I better skip dinner tonight, despite Mike taking the time to make me a slow cooked simple soup. Last night did not do me any good and this morning’s cereal seemed to lead to stagnation in my improvement.  As meals are a time of rest and relaxation for me, I decided I needed to come up with a plan B. I decided I could do some research on the condition: Gastroparesis. I could write a note to my Mother, thanking her for her support and advice over the weekend. I could work on Halloween decorations. “How much time not having to cook and eat dinner will save, “I chuckled to myself.

I lay on the couch.  Slowly I let a breath out, and gently let one in, feeling my stomach rise, just as my Mother had taught me. I could hear her saying, “Let your diaphragm relax”. It was her inkling that the tensing of my diaphragm was leading to increased lack of movement, and augmenting stomach muscle functioning. On the couch for thirty minutes, somewhere between hopeful and helpless. Very few sounds emerged.

I had an idea! I found a ladybug shaped electric massager a friend had given me years ago. For another thirty minutes I laid, moving the lady mug on my belly, pushing on my stomach & intestine; trying to work out the kinks. Some progress. . . Did I hear something! Did I feel something drip?

I crawl off the couch and am surprised to see it is 7 p.m. I decide to have a hot mug of water with apple cider vinegar. This is followed by a ginger ale. . . and a strawberry Starburst candy.

9:30 p.m.

Still no appetite. We will see what tomorrow brings. . .

You have just experienced a day of Gastroparesis. “Gastro. . .what?!” you may ask. Gastroparesis is not one of the increasingly apparent digestive conditions we hear about today. More and more we are hearing about certain allergens such as to wheat, or nuts.  However, has anyone heard of this disease such as this,  when you are not allergic to a particular type of food, but cannot digest food all together?

I would like to educate people about Gastroparesis. As the name sounds, “gastro” refers to one’s stomach and the digestive tract. “Paresis” refers to the state of being paralyzed. Therefore, it is easy to see by breaking this word down how it may greatly impact an individual. In myself, and others with this diagnoses, we experience a sensation that our stomachs are motionless, stagnant, unresponsive. In a typical stomach, the stomach muscles are able to push food along, moving the food to the small intestine and onward. In Gastroparesis, the food has trouble moving along, and can sit on one’s stomach for an unknown and unusually long time. As you can imagine, this is not exactly a comfortable experience. It can lead to nutritional deficiencies, nausea and vomiting, and unstable blood sugars.

Before I move on, a little more background on digestion; a flash from the past from middle school biology.  Your digestive process begins in your mouth. As soon as you place food on your tongue your salivatory glands, well, start salivating. We chew with our teeth, and this begins to break down the food into smaller pieces. It then travels down the esophagus and into the stomach.  The stomach is a muscular and hollow organ, with four distinct sections.  The cardia, is where food enters from the esophagus. The fundus is the upper curve of the organ. The corpus body is the main central region. The pylorus or anthem enters into the small intestine.

The stomach lies in the upper abdominal cavity, in front of the diaphragm. Behind the stomach is the pancreas.  Valves, or sphincters keep the contents of the stomach where they should be. The esophageal sphincter is in the cardiac region and the Pyloric sphincter divides the stomach and the small intestine.

The stomach is surrounded by parasympathetic (stimulant) and orthosympathetic (inhibitor) plexuses, or networks of blood vessels and nerves). These regulate the secretion activity and the motor activity of the muscles.

Normally, the stomach kills off the microorganisms with acid and begins an increased mechanical breakdown of food.  Acid both kills most contaminating microorganisms and begins mechanical break down of some food (eg denaturation of protein), and chemical alteration of some. After some time (typically an hour or two in humans, food is digested. With Gastroparesis, it can range from 4 to much more (72 plus) to digest.

There is no rhyme or reason for why otherwise healthy persons may experience Gastroparesis. Often persons who have diabetes have this as a syndrome. Otherwise, it can occur with persons who have experienced trauma to the Vagus nerve.

Thanksgiving 2010: Celery Soup

I love Thanksgiving. I love the idea that it brings all Americans together to share a meal, regardless of religion, race, gender, age ect. It is a time to celebrate the harvest with an abundance of food.  It is a time to be with those you care for and to realize all you have; to be thankful.

However, since suffering from Gastroparesis, I have come to have a “love-hate” relationship with this holiday. My illness desires the opposite of the idea of the large, never ending meal. With Gastroparesis, there is not always one type of food you need to avoid, as there often is with other digestive disorders. With GP, the best approach is to eat several small “meals” throughout the day.

I do not need to eat a classic Thanksgiving meal to feel that stuffed, overly full feeling. Lucky (ha ha) for me, I pretty much have that feeling after each time I eat. Not because I eat whooping servings at each meal. Rather, because my stomach can only handle small amounts at a time. Therefore, simply a single serving non-fat yogurt and ½ a banana (cooked) gives me that after-Thanksgiving-feeling.

You can see why then the Thanksgiving meal is hard for me. Luckily, I have an understanding husband and family. I have made a vow with myself that I will not let this disorder get in the way of enjoying social events. I try to make the best of it. This year for Thanksgiving I made a soup recipe I have never made before. Soup is a common food for me to eat as it digests easily, and I often lazily make the same kind. So my celery soup laced with thyme felt like a treat. This does not mean it is easy to watch others take their mashed potatoes, sweet potatoes topped with marshmallows, rolls with butter, cranberry nut sauce, green bean casserole, gravy, turkey, and turkey. While perhaps I could eat a bite of each, it seems easier to stick to one food that I know will go down. When I watch my family enjoy the pumpkin pie after, I admit that I am amazed at what a “normal” stomach can consume and frustrated at what my meager belly can fit.  

So despite my optimism, I did end up in tears this year. I hate to feel sorry for myself, as I tell myself there are people much worse off than me with life threatening diseases, or those who do not have enough food to eat. But in the moment, I just feel so angry. “Why can’t I be like everyone else?” “Will I ever enjoy a “real” Thanksgiving meal again? “How did I take it for granted back when I could eat more “normally?”

Later, as I sipped my hot cider for dessert, I calmed down. I felt thankful for the nice company of my family, for the stories we shared over the meal, for the love that went into preparing for the meal. And I am sure I will be okay,  I need to just take it day by day.