Day Six:
I don't know where the day went today, but my head is still spinning and I'm too tired to write. I went for my Rheumatologist visit and have no idea where I am or where I'm headed. Everything makes me a "complex" case (of course), so nothing is clear cut. The only great news I got was that nothing "else" is wrong... right now. Woohoo. But where does that leave me? I need the genetic test for Celiac but don't know if insurance will pay for it. Super! A biopsy, like the one I already went for a year and a half ago, may not be definitive in my case. Wonderful! So now I just wait. For what, I don't exactly know.
Today I'm more frustrated than I have been in a few days, so I feel like I've taken two steps back. I feel like I'm getting somewhat used to eating this diet now, but even still I can't help but wonder how I'm going to manage for the REST of my life. My mom brought over a gluten-free cake (one of the mixes) and I took one bite and wanted to gag. What a disappointment. It tasted like the bread I eat for my sandwich. Seriously.... the aftertaste is like your morning breath after a night of drinking. My mom thinks I exaggerate (me???!!!) but if you don't believe me, try it. My wonderful, supportive husband ate two huge bites of the cake (ha!) and said it wasn't too bad, until the aftertaste set in. Then he changed his tune and said he might eat it if he was starving and there wasn't anything left to eat. I mean, hellllloooo! Can you understand why I'm mourning here? Maybe I'll just stick with fruit after all. But can I really give up the real genuine brownie? Me? That will be a sight to be seen. In my frustration, I punched the leftover cake (hahaha)... a normal cake would crumble. No, not this cake! This mighty cake bounced back, like my Tempurpedic mattress. Ugh. I just might gag again.
Tuesday, January 31, 2012
Monday, January 30, 2012
Day Five:
Today I am riddled with questions.
What in the hey am I supposed to eat for lunch? Today was my first day eating lunch at work with no sandwich. Gluten-free bread is palatable if you toast it, which isn't possible at school, so I am left with limited options. So I brought a salad the size of Texas and had a good laugh as people looked at me like I was a rabbit loose in the garden. Don't get me wrong, I love salad as much as the next guy. Sometimes, though, it just isn't satisfying... at all. I've tried all of the fixings- nuts, fruit, meats, eggs, cheese.... let's just say it's going to be an adjustment. Especially without the ever-so-delicious garlic butter crouton. I am not a soup person either. I don't mind it, and sometimes really enjoy it, but I will rarely get excited about soup. Not to mention that most soups that aren't homemade have gluten in them. So that's out, too, since I don't have the energy or desire to brew up my own concoction. So here I am... yet again realizing that my life revolves around bread. Hmph. Lunch is my favorite meal of the day. Seriously. But at least I've got my chips! So I'll just eat salad for now and keep on thinking.... what am I going to have tomorrow?
Will I gain or will I lose? That's another question on my mind today. Celiac is such a crazy disease, because people have so many different symptoms that while some gain weight after diagnosis, others lose weight. Which category will I fit into? It's funny, because before diagnosis, all I wanted to do was lose the weight I put on. Not because I cared about my pant size, but because I didn't feel comfortable. But today, after diagnosis, I really don't care what happens with my weight (okay, well maybe that's an overstatement since I obviously don't want to gain 100 pounds).... but my point is, all I want to do is get healthy. If that doesn't mean losing this weight, then so be it. If I do lose it, well, I will consider it a major bonus of course! I think women spend so much time worrying about their weight, when what they should really be focused on is whether or not they take care of themselves and are focused on how they feel. When you think about it, why do we all need scales?
Juice or Smoothie? I bought a juicer, and now I'm thinking twice about it. It seems like a lot of work, and a lot of money. I discovered these super healthy smoothies that seemed expensive until I really started to calculate what I am going to spend on fruit and veggies for the juicer, not to mention the time and energy it will take to make all of these drinks I'm planning to have. So what do I do? Abandon the juicer and stock up on the smoothies? It seems like it can't be the most cost effective this way, but how can I possibly buy 6.5 apples, 3.5 oranges, 1 banana, and 3.75 mangoes for under the cost of the fruit smoothie ($3.15)? Why is this so puzzling to me?
When am I going to stop being hungry? Anyone? Ben says it's in my head because I'm thinking about it constantly. Really, babe? I'm sure perseverating on this fact doesn't help anything, but no matter what I do my stomach is really and truly growling at me. How can I stop thinking about it when I'm interrupted every five minutes by a snoring elephant? It's really pretty aggravating at this point. The worst part is still that I don't want to eat most of the time. I just don't get it. I bought Tilapia for dinner tonight and had to put it in the freezer, because the thought of putting that in my mouth made me want to gag. This is almost like being pregnant again, except without the babies... and without the bread.
Tonight I had my very first "normal" meal. By normal I mean that I didn't do anything different than before before my diagnosis (aside from checking the labels). TACOS!!!! Yum. Another interesting question that I'm pondering... other than bread, why are most of my favorite foods gluten-free? Is this just a lucky coincidence? Well, whatever the answer is, I might as well stop asking questions and just enjoy what I can!
Today I am riddled with questions.
What in the hey am I supposed to eat for lunch? Today was my first day eating lunch at work with no sandwich. Gluten-free bread is palatable if you toast it, which isn't possible at school, so I am left with limited options. So I brought a salad the size of Texas and had a good laugh as people looked at me like I was a rabbit loose in the garden. Don't get me wrong, I love salad as much as the next guy. Sometimes, though, it just isn't satisfying... at all. I've tried all of the fixings- nuts, fruit, meats, eggs, cheese.... let's just say it's going to be an adjustment. Especially without the ever-so-delicious garlic butter crouton. I am not a soup person either. I don't mind it, and sometimes really enjoy it, but I will rarely get excited about soup. Not to mention that most soups that aren't homemade have gluten in them. So that's out, too, since I don't have the energy or desire to brew up my own concoction. So here I am... yet again realizing that my life revolves around bread. Hmph. Lunch is my favorite meal of the day. Seriously. But at least I've got my chips! So I'll just eat salad for now and keep on thinking.... what am I going to have tomorrow?
Will I gain or will I lose? That's another question on my mind today. Celiac is such a crazy disease, because people have so many different symptoms that while some gain weight after diagnosis, others lose weight. Which category will I fit into? It's funny, because before diagnosis, all I wanted to do was lose the weight I put on. Not because I cared about my pant size, but because I didn't feel comfortable. But today, after diagnosis, I really don't care what happens with my weight (okay, well maybe that's an overstatement since I obviously don't want to gain 100 pounds).... but my point is, all I want to do is get healthy. If that doesn't mean losing this weight, then so be it. If I do lose it, well, I will consider it a major bonus of course! I think women spend so much time worrying about their weight, when what they should really be focused on is whether or not they take care of themselves and are focused on how they feel. When you think about it, why do we all need scales?
Juice or Smoothie? I bought a juicer, and now I'm thinking twice about it. It seems like a lot of work, and a lot of money. I discovered these super healthy smoothies that seemed expensive until I really started to calculate what I am going to spend on fruit and veggies for the juicer, not to mention the time and energy it will take to make all of these drinks I'm planning to have. So what do I do? Abandon the juicer and stock up on the smoothies? It seems like it can't be the most cost effective this way, but how can I possibly buy 6.5 apples, 3.5 oranges, 1 banana, and 3.75 mangoes for under the cost of the fruit smoothie ($3.15)? Why is this so puzzling to me?
When am I going to stop being hungry? Anyone? Ben says it's in my head because I'm thinking about it constantly. Really, babe? I'm sure perseverating on this fact doesn't help anything, but no matter what I do my stomach is really and truly growling at me. How can I stop thinking about it when I'm interrupted every five minutes by a snoring elephant? It's really pretty aggravating at this point. The worst part is still that I don't want to eat most of the time. I just don't get it. I bought Tilapia for dinner tonight and had to put it in the freezer, because the thought of putting that in my mouth made me want to gag. This is almost like being pregnant again, except without the babies... and without the bread.
Tonight I had my very first "normal" meal. By normal I mean that I didn't do anything different than before before my diagnosis (aside from checking the labels). TACOS!!!! Yum. Another interesting question that I'm pondering... other than bread, why are most of my favorite foods gluten-free? Is this just a lucky coincidence? Well, whatever the answer is, I might as well stop asking questions and just enjoy what I can!
Sunday, January 29, 2012
Day Four:
Neurologist. Rheumatologist. Endocrinologist. Orthopedist. Dermatologist. Otolaryngologist. Podiatrist. Gastroenterologist. Allergist. Perinatologist.
This is a list of many of the types of specialists I have been to in my life. I always told my mom I would be in a medical journal some day... I'm still wondering. I won't be talking about most of the doctors listed above in today's post, mostly because many of them deal with other issues I've had. We'll leave that for another day... and maybe another blog. ;) I can't help but wonder, though.... how much of it all connects to where I am now and this disease? As you read on, you'll see what I mean....
You may be wondering how I got to this diagnosis.... My medical history is very long and complicated (obviously), so I'll try to leave out the unrelated stuff! I felt compelled to share this part of my story because some of you, or people you know, might be having similar problems and have no idea that it may be due to Celiac Disease, or even just a sensitivity to gluten. 1 out of 133 people is affected by this disease, and 97% of them are undiagnosed. Some of my symptoms include severe fatigue, unexplained weight gain, abdominal bloating, joint pain, and migraine headaches. Here is a link if you want to read about all of the symptoms. The interesting thing is that most of my symptoms are not classic symptoms of Celiac Disease. However, weight gain is a classic symptom, but so is weight loss... so how is a doctor supposed to even guess that this is a possibility?
Believe it or not, my story began in my early teens, when a positive ANA blood test (some kind of antibody level that was very abnormal) led me to my first autoimmune disease diagnosis- Vitiligo. My body began attacking healthy pigment cells, and parts of my body lost all color. This disease has ebbed and flowed throughout the years, and affects nearly every joint on my body. At times it seems to stabilize and even regenerate itself, and at other times it spreads like wildfire leaving me very discolored. For years I was plagued by this disease. I was so upset and embarrassed when I looked at my face, my hands, my arms. But then I realized that I had an autoimmune disease and I wasn't sick. I was lucky. Around the same time, I was having stomach problems and learned I was severely lactose intolerant. I failed the test with flying colors and was sent on my way with a list of foods that I could eat. (This was back when LI wasn't well known. I have a vivid memory of crying to my mom that the only thing on the list was marshmallows and peanut butter. Ha!) This, too, has varied in intensity throughout my life, but still plagues me. However, in reading about Celiac Disease, LI can actually resolve itself after beginning a gluten-free diet. After nearly two decades with a dairy-induced stomachache (among other things!), can you imagine how much hope I have?
In my later teens, I was diagnosed with Hypermobility. I was constantly having pains and overdoing it... one day it would be my hip, then my knee, then my wrist. Hypermobility is diagnosed with a Beighton Scale... you can score a maximum of 9 points, depending on how loose your joints are and how many of the maneuvers you can do (such as bending your thumb down to touch your wrist). Wouldn't you know, I scored a 9. And in case you're wondering, yes, I can do that. Try it- it's bizarre. I recently learned that the bilateral hernias I suffered at age 21 and 24 were probably a result of being hypermobile. Who'd have thunk it. In high school, the migraines started. I've had periods of time when they aren't too bad, and then other times when they have drastically impacted my life. During one of my worst spells, I was instructed to track every migraine for almost a year so that we could find the cause, but the doctor was never able to find a common denominator between them. So I just continued to deal.
Age 30. I began to gain weight. Am I getting old? My weight has always fluctuated by two to three pounds, so the first few pounds didn't raise any red flags. But then came five pounds. And then five more. This may not seem like a lot, but it was the most I had ever gained at once, aside from the 32 pounds during pregnancy. At first I chalked it up to motherhood and not taking good care of myself. But after a few months, no matter what I tried I couldn't get the weight to come off, not even a pound. And then, the fatigue set in. I've always, always, always, been a tired person since as long as I can remember. I'm the first to bed and the last to rise. I love to sleep. But this fatigue was different. I would complain about it to my doctor, but we would both just laugh and then talk about my life with twins. This went on for quite some time, until I began noticing the fatigue was getting worse, yet my girls were getting older and somewhat easier to take care of. I couldn't make it through a day without napping. By 8:00 at night, I would fall asleep and Ben would gently guide me up to bed... unable to get me up before 7:00 the next morning. And I was still impossibly, frustratingly, tired. I couldn't help but complain, and even I got tired (ha! pun intended!) of listening to it.
Nothing seemed to make sense. The joint pains were worse than ever... getting out of bed became a struggle some days. And the headaches were horrible. I was also feeling so anxious that I began grinding my teeth at night. Then my OB/GYN decided to run a test. She said she had been thinking about everything I'd been saying and something wasn't adding up. She was the only person I trusted and I knew she believed me... that something must be wrong. She was right. I was diagnosed with Hashimoto's Disease a short time later, which is another autoimmune disease that affects the thyroid. Hallelujah, I have an answer! Off to a new doctor I went, who assured me that the right medication would fix my symptoms. At first I thought I was getting better. I lost a pound and seemed to get up a little quicker in the morning. The placebo effect? Who knows. About three months into treatment I realized that nothing had changed. Not my weight, my forgetfulness, my anxiety, my pain, nor my fatigue. Wow. You can imagine how deflated I felt. So I went back to my OB/GYN, which seems ridiculous, but really was the only place I could turn to. With now two verified autoimmune disease plaguing me, it was time to call in some help. She encouraged me to see a Rheumatologist, which made my head spin because I knew it just meant more tests. I put it off for almost a month, and then with the encouragement of my friend Val, finally realized I couldn't just wish these symptoms away. And here I am today. You'd think I would feel skeptical, given my lack of success with the Hashimoto's treatment. But I'm not skeptical at all, because wouldn't you know, Celiac is commonly linked to thyroid disorders. I've also been told that most people with autoimmune diseases have more than one. So all I have left is hope that this is the diagnosis. This has to be it. All of the statistics show that it typically takes 4 years to diagnose Celiac Disease, so I know that I'm not alone. Third diagnosis is the charm, right?
P.S. I'm hungry!
Neurologist. Rheumatologist. Endocrinologist. Orthopedist. Dermatologist. Otolaryngologist. Podiatrist. Gastroenterologist. Allergist. Perinatologist.
This is a list of many of the types of specialists I have been to in my life. I always told my mom I would be in a medical journal some day... I'm still wondering. I won't be talking about most of the doctors listed above in today's post, mostly because many of them deal with other issues I've had. We'll leave that for another day... and maybe another blog. ;) I can't help but wonder, though.... how much of it all connects to where I am now and this disease? As you read on, you'll see what I mean....
You may be wondering how I got to this diagnosis.... My medical history is very long and complicated (obviously), so I'll try to leave out the unrelated stuff! I felt compelled to share this part of my story because some of you, or people you know, might be having similar problems and have no idea that it may be due to Celiac Disease, or even just a sensitivity to gluten. 1 out of 133 people is affected by this disease, and 97% of them are undiagnosed. Some of my symptoms include severe fatigue, unexplained weight gain, abdominal bloating, joint pain, and migraine headaches. Here is a link if you want to read about all of the symptoms. The interesting thing is that most of my symptoms are not classic symptoms of Celiac Disease. However, weight gain is a classic symptom, but so is weight loss... so how is a doctor supposed to even guess that this is a possibility?
Believe it or not, my story began in my early teens, when a positive ANA blood test (some kind of antibody level that was very abnormal) led me to my first autoimmune disease diagnosis- Vitiligo. My body began attacking healthy pigment cells, and parts of my body lost all color. This disease has ebbed and flowed throughout the years, and affects nearly every joint on my body. At times it seems to stabilize and even regenerate itself, and at other times it spreads like wildfire leaving me very discolored. For years I was plagued by this disease. I was so upset and embarrassed when I looked at my face, my hands, my arms. But then I realized that I had an autoimmune disease and I wasn't sick. I was lucky. Around the same time, I was having stomach problems and learned I was severely lactose intolerant. I failed the test with flying colors and was sent on my way with a list of foods that I could eat. (This was back when LI wasn't well known. I have a vivid memory of crying to my mom that the only thing on the list was marshmallows and peanut butter. Ha!) This, too, has varied in intensity throughout my life, but still plagues me. However, in reading about Celiac Disease, LI can actually resolve itself after beginning a gluten-free diet. After nearly two decades with a dairy-induced stomachache (among other things!), can you imagine how much hope I have?
In my later teens, I was diagnosed with Hypermobility. I was constantly having pains and overdoing it... one day it would be my hip, then my knee, then my wrist. Hypermobility is diagnosed with a Beighton Scale... you can score a maximum of 9 points, depending on how loose your joints are and how many of the maneuvers you can do (such as bending your thumb down to touch your wrist). Wouldn't you know, I scored a 9. And in case you're wondering, yes, I can do that. Try it- it's bizarre. I recently learned that the bilateral hernias I suffered at age 21 and 24 were probably a result of being hypermobile. Who'd have thunk it. In high school, the migraines started. I've had periods of time when they aren't too bad, and then other times when they have drastically impacted my life. During one of my worst spells, I was instructed to track every migraine for almost a year so that we could find the cause, but the doctor was never able to find a common denominator between them. So I just continued to deal.
Age 30. I began to gain weight. Am I getting old? My weight has always fluctuated by two to three pounds, so the first few pounds didn't raise any red flags. But then came five pounds. And then five more. This may not seem like a lot, but it was the most I had ever gained at once, aside from the 32 pounds during pregnancy. At first I chalked it up to motherhood and not taking good care of myself. But after a few months, no matter what I tried I couldn't get the weight to come off, not even a pound. And then, the fatigue set in. I've always, always, always, been a tired person since as long as I can remember. I'm the first to bed and the last to rise. I love to sleep. But this fatigue was different. I would complain about it to my doctor, but we would both just laugh and then talk about my life with twins. This went on for quite some time, until I began noticing the fatigue was getting worse, yet my girls were getting older and somewhat easier to take care of. I couldn't make it through a day without napping. By 8:00 at night, I would fall asleep and Ben would gently guide me up to bed... unable to get me up before 7:00 the next morning. And I was still impossibly, frustratingly, tired. I couldn't help but complain, and even I got tired (ha! pun intended!) of listening to it.
Nothing seemed to make sense. The joint pains were worse than ever... getting out of bed became a struggle some days. And the headaches were horrible. I was also feeling so anxious that I began grinding my teeth at night. Then my OB/GYN decided to run a test. She said she had been thinking about everything I'd been saying and something wasn't adding up. She was the only person I trusted and I knew she believed me... that something must be wrong. She was right. I was diagnosed with Hashimoto's Disease a short time later, which is another autoimmune disease that affects the thyroid. Hallelujah, I have an answer! Off to a new doctor I went, who assured me that the right medication would fix my symptoms. At first I thought I was getting better. I lost a pound and seemed to get up a little quicker in the morning. The placebo effect? Who knows. About three months into treatment I realized that nothing had changed. Not my weight, my forgetfulness, my anxiety, my pain, nor my fatigue. Wow. You can imagine how deflated I felt. So I went back to my OB/GYN, which seems ridiculous, but really was the only place I could turn to. With now two verified autoimmune disease plaguing me, it was time to call in some help. She encouraged me to see a Rheumatologist, which made my head spin because I knew it just meant more tests. I put it off for almost a month, and then with the encouragement of my friend Val, finally realized I couldn't just wish these symptoms away. And here I am today. You'd think I would feel skeptical, given my lack of success with the Hashimoto's treatment. But I'm not skeptical at all, because wouldn't you know, Celiac is commonly linked to thyroid disorders. I've also been told that most people with autoimmune diseases have more than one. So all I have left is hope that this is the diagnosis. This has to be it. All of the statistics show that it typically takes 4 years to diagnose Celiac Disease, so I know that I'm not alone. Third diagnosis is the charm, right?
P.S. I'm hungry!
Saturday, January 28, 2012
Dr. Oz on Celiac Disease vs. Gluten Intolerance
Check out this video to learn more about Celiac Disease from Dr. Oz. It's very informative and a real eye-opener.
Check out this video to learn more about Celiac Disease from Dr. Oz. It's very informative and a real eye-opener.
Day Three:
Peanut butter. I've decided it's my new favorite thing. It's 4:50 a.m. and I'm eating a spoonful, along with a clementine, because I couldn't stay one more minute in bed. Interestingly enough, I didn't feel like I was hit by a truck when I got up and headed downstairs for a snack. Hmmmm.... could this be? A cure? The glass has to be half full, I know.... I am trying to change my pessimism here. It's quite difficult when all I keep thinking about are new things to mourn. Like when my Ben, my sweet, loving, but sometimes clueless hubby, came out of the blue at 11:00 last night with the word "calamari," which sent me into tears. He's trying to mourn with me, I know, but it only keeps reminding me of the favorite (ohhhh, the favorite!!!!!!!) things I can no longer enjoy in the way I used to. But I have to remember he means well, and we'll get through this as long as I keep on communicating to him, and everybody else, what I need.
This morning, when I woke up HUNGRY, my first thought was my two little girls asleep in their beds. I started to cry because I felt overwhelmingly sad. (There's that term "overwhelmed" again, sorry!) Yes, it's great that this disease can cure me. Absolutely, I know I will be (and am) thankful for that. But what about what's lost? I can't help but think about it. My two beautiful girls and the time that we've had since I've been home with them. How many opportunities were missed because I had to rest, or couldn't wake up in the morning after too many hours of sleep? "Mommy, how are you feeling today?" my Lauren now asks me every morning. It's almost too painful to think about. I am grateful that I haven't had to work full time during this time, as I have had soooo many snuggles with my babies, and too many good times to count. Plus, I don't know if I could have physically handled it. But at the same time, why did my girls have to pay a price, too, for this disease? I want to rewind the clock for them, and give them all of me, not just the pieces they have gotten. In eight months they will be off to school full time, and even though it isn't my fault, I can't keep the thought out of my mind that I've wasted all of the precious time I've had with them. I guess it's going to take some more time... some more acceptance... and definitely some more peanut butter.
Okay.... A juicer. A breadmaker. A new attitude. Those are the three things I've decided I need on day three. I'm still starving all of the time, and I have no desire to eat (except in the middle of the night, apparently). It's almost like my body is protesting against this new diagnosis. Nothing, and I mean nothing, sounds appealing to me. Not even popcorn, which, if you know me is quite shocking, since it's pretty much a staple in my diet. I've done some research, and I'm amazed to learn that being hungry all the time is a normal and quite common reaction for a person with Celiac who has just gone gluten-free. Honestly, I was hoping that when I put the terms "celiac, diet, starving all the time" into Google, I would get a million hits on medical sites that would tell me that it meant my Celiac test was a false positive, and that if I was hungry all the time I must add gluten back into my diet. Too bad I'm not off the hook. Instead, I got a lot of sites that described just exactly what I'm going through. Hmph. This is a little scary for me because it means this disease is real now. Apparently my body is trying to make up for the time it wasn't properly absorbing the nutrients from food. I have so many questions.... Dare I say that I think this means I am on my way (turtle steps) to acceptance?
You are probably wondering about my dinner last night... well, let's just say that it was the best meal I've had since becoming gluten-free. I know that doesn't say much, but it should. It was a fabulous meal. I had my own menu, and despite the little GF in the corner, no one would suspect a thing! There were two whole pages of food choices, and I am happy to report that everything from start to finish was pretty darn tasty. The bread was a little different, but still good, and my salad, pasta, and flourless chocolate cake did the trick. I'm sure the two glasses of wine helped a little, but who cares... the point is, I enjoyed my meal. Hooray! Thanks, Mom....my GirlFriend and GlutenFree date. I feel happier today, knowing that 1. I have leftovers for dinner tonight, and 2. I can go out to dinner once in a while and actually enjoy it. Phew! Nevermind the bill, and the fact that two hours after I got home I was STARVING, AGAIN!!!!!!!
P.S. Spell check. The word Celiac comes up as a misspelled word. Pretty funny because the word becomes highlighted in BRIGHT YELLOW and stays that way until you fix it. Thanks for the GLARING REMINDER! Some of my choices to fix it are: Celia, Celka, Celtic, Celina, Celeriac. Maybe I'll start to refer to it as Celka Disease. Get with the program, Google!!!!
Peanut butter. I've decided it's my new favorite thing. It's 4:50 a.m. and I'm eating a spoonful, along with a clementine, because I couldn't stay one more minute in bed. Interestingly enough, I didn't feel like I was hit by a truck when I got up and headed downstairs for a snack. Hmmmm.... could this be? A cure? The glass has to be half full, I know.... I am trying to change my pessimism here. It's quite difficult when all I keep thinking about are new things to mourn. Like when my Ben, my sweet, loving, but sometimes clueless hubby, came out of the blue at 11:00 last night with the word "calamari," which sent me into tears. He's trying to mourn with me, I know, but it only keeps reminding me of the favorite (ohhhh, the favorite!!!!!!!) things I can no longer enjoy in the way I used to. But I have to remember he means well, and we'll get through this as long as I keep on communicating to him, and everybody else, what I need.
This morning, when I woke up HUNGRY, my first thought was my two little girls asleep in their beds. I started to cry because I felt overwhelmingly sad. (There's that term "overwhelmed" again, sorry!) Yes, it's great that this disease can cure me. Absolutely, I know I will be (and am) thankful for that. But what about what's lost? I can't help but think about it. My two beautiful girls and the time that we've had since I've been home with them. How many opportunities were missed because I had to rest, or couldn't wake up in the morning after too many hours of sleep? "Mommy, how are you feeling today?" my Lauren now asks me every morning. It's almost too painful to think about. I am grateful that I haven't had to work full time during this time, as I have had soooo many snuggles with my babies, and too many good times to count. Plus, I don't know if I could have physically handled it. But at the same time, why did my girls have to pay a price, too, for this disease? I want to rewind the clock for them, and give them all of me, not just the pieces they have gotten. In eight months they will be off to school full time, and even though it isn't my fault, I can't keep the thought out of my mind that I've wasted all of the precious time I've had with them. I guess it's going to take some more time... some more acceptance... and definitely some more peanut butter.
Okay.... A juicer. A breadmaker. A new attitude. Those are the three things I've decided I need on day three. I'm still starving all of the time, and I have no desire to eat (except in the middle of the night, apparently). It's almost like my body is protesting against this new diagnosis. Nothing, and I mean nothing, sounds appealing to me. Not even popcorn, which, if you know me is quite shocking, since it's pretty much a staple in my diet. I've done some research, and I'm amazed to learn that being hungry all the time is a normal and quite common reaction for a person with Celiac who has just gone gluten-free. Honestly, I was hoping that when I put the terms "celiac, diet, starving all the time" into Google, I would get a million hits on medical sites that would tell me that it meant my Celiac test was a false positive, and that if I was hungry all the time I must add gluten back into my diet. Too bad I'm not off the hook. Instead, I got a lot of sites that described just exactly what I'm going through. Hmph. This is a little scary for me because it means this disease is real now. Apparently my body is trying to make up for the time it wasn't properly absorbing the nutrients from food. I have so many questions.... Dare I say that I think this means I am on my way (turtle steps) to acceptance?
You are probably wondering about my dinner last night... well, let's just say that it was the best meal I've had since becoming gluten-free. I know that doesn't say much, but it should. It was a fabulous meal. I had my own menu, and despite the little GF in the corner, no one would suspect a thing! There were two whole pages of food choices, and I am happy to report that everything from start to finish was pretty darn tasty. The bread was a little different, but still good, and my salad, pasta, and flourless chocolate cake did the trick. I'm sure the two glasses of wine helped a little, but who cares... the point is, I enjoyed my meal. Hooray! Thanks, Mom....my GirlFriend and GlutenFree date. I feel happier today, knowing that 1. I have leftovers for dinner tonight, and 2. I can go out to dinner once in a while and actually enjoy it. Phew! Nevermind the bill, and the fact that two hours after I got home I was STARVING, AGAIN!!!!!!!
P.S. Spell check. The word Celiac comes up as a misspelled word. Pretty funny because the word becomes highlighted in BRIGHT YELLOW and stays that way until you fix it. Thanks for the GLARING REMINDER! Some of my choices to fix it are: Celia, Celka, Celtic, Celina, Celeriac. Maybe I'll start to refer to it as Celka Disease. Get with the program, Google!!!!
Friday, January 27, 2012
Day Two:
"Why can't you eat the things I eat, Mama?" says my almost-five year old Lauren. Good question. I'm thinking, "Because life is cruel!" but instead, I say, "Because some of the foods you eat give Mommy a tummy ache," and that seems to satisfy her curiosity... for now. My almost-five year old, Natalie, on the other hand, takes a bite of my gluten-free bread and says "Ewwww... this tastes like yuck." My sentiments exactly. Someone told me that I have to change my way of eating, and I think I've come to the sad realization that this is true. Some things just shouldn't be made in a gluten-free form. I'm a grown woman and I'm just going to have to accept the fact that I'm done eating them. Really?! Ughh... well, I guess the first step is admittance. I'm just not quite ready to accept it yet.
Lipstick. Lotion. Shampoo. Soy sauce. Pickles. Salad dressing. These are things I had no idea might have gluten in them. This is where I feel completely and utterly defeated and overwhelmed. Another thing is contamination. I need my own butter, my own toaster tray, my own pan when we cook.... segregation is key. It seems silly, but it makes me feel sad to have to label all my food like I'm an outsider in this family... like using a different tub of butter somehow makes me less connected to my counterparts. This is hereditary, so I pray everyday that my sister and my children don't suffer my same fate. Only time will tell. In the meantime, I will just try to find the positive here.... I don't have to share my food (who wants it anyway!?) and no one will double dip in my containers. Yay!
On the upside, I'm eating a bagel today. Udi's. It's not half bad. The aftertaste is not my favorite, but I'm figuring it'll be an acquired taste. At least it's a bagel. I silently mourn the loss of Nicky's Jersey bagels, but am trying to stay strong. One step at a time. Tonight I'll take my first journey to the outside world... restaurant eating. It's an upscale restaurant (of course) with it's own gluten-free menu. It gives me hope. If I go to a place like Chili's, their gluten-free menu includes a hamburger, with no bun and no fries- ha! That sounds like a real treat. Hopefully if I spend a chunk of change at an upscale place, they'll at least attempt to make a decent meal and hide from the rest of the table that it's gluten free. I can just imagine the horror of my children watching me eat a plain hamburger on a plate at Chili's. What a sight that would be!
By the way, I have a support group. It's not the kind where you meet every week and sit in a circle with donuts (ha!) and coffee, but it's my lifeline right now. My Mom. She's gluten-sensitive and is at least a month into her new life. She's thriving on this diet, so thank God for her support. She's my personal shopper and cheerleader, pushing me through the lowest of the low points. My Aunt Kath is my celiac buddy, too, so I'm feeling the love. She answers my million questions about different products and lets me vent about how much this sucks. Gotta love her. And Ellen, who's gluten-sensitive and has a never ending knowledge base on this topic. She is incredibly enthusiastic and has been on this diet the longest, so I know there is hope. I'm not happy about joining this stupid club, but at least I'm not the first member.
I will get through this, and things will get better. In fact, things will get greater. Right?!
"Why can't you eat the things I eat, Mama?" says my almost-five year old Lauren. Good question. I'm thinking, "Because life is cruel!" but instead, I say, "Because some of the foods you eat give Mommy a tummy ache," and that seems to satisfy her curiosity... for now. My almost-five year old, Natalie, on the other hand, takes a bite of my gluten-free bread and says "Ewwww... this tastes like yuck." My sentiments exactly. Someone told me that I have to change my way of eating, and I think I've come to the sad realization that this is true. Some things just shouldn't be made in a gluten-free form. I'm a grown woman and I'm just going to have to accept the fact that I'm done eating them. Really?! Ughh... well, I guess the first step is admittance. I'm just not quite ready to accept it yet.
Lipstick. Lotion. Shampoo. Soy sauce. Pickles. Salad dressing. These are things I had no idea might have gluten in them. This is where I feel completely and utterly defeated and overwhelmed. Another thing is contamination. I need my own butter, my own toaster tray, my own pan when we cook.... segregation is key. It seems silly, but it makes me feel sad to have to label all my food like I'm an outsider in this family... like using a different tub of butter somehow makes me less connected to my counterparts. This is hereditary, so I pray everyday that my sister and my children don't suffer my same fate. Only time will tell. In the meantime, I will just try to find the positive here.... I don't have to share my food (who wants it anyway!?) and no one will double dip in my containers. Yay!
On the upside, I'm eating a bagel today. Udi's. It's not half bad. The aftertaste is not my favorite, but I'm figuring it'll be an acquired taste. At least it's a bagel. I silently mourn the loss of Nicky's Jersey bagels, but am trying to stay strong. One step at a time. Tonight I'll take my first journey to the outside world... restaurant eating. It's an upscale restaurant (of course) with it's own gluten-free menu. It gives me hope. If I go to a place like Chili's, their gluten-free menu includes a hamburger, with no bun and no fries- ha! That sounds like a real treat. Hopefully if I spend a chunk of change at an upscale place, they'll at least attempt to make a decent meal and hide from the rest of the table that it's gluten free. I can just imagine the horror of my children watching me eat a plain hamburger on a plate at Chili's. What a sight that would be!
By the way, I have a support group. It's not the kind where you meet every week and sit in a circle with donuts (ha!) and coffee, but it's my lifeline right now. My Mom. She's gluten-sensitive and is at least a month into her new life. She's thriving on this diet, so thank God for her support. She's my personal shopper and cheerleader, pushing me through the lowest of the low points. My Aunt Kath is my celiac buddy, too, so I'm feeling the love. She answers my million questions about different products and lets me vent about how much this sucks. Gotta love her. And Ellen, who's gluten-sensitive and has a never ending knowledge base on this topic. She is incredibly enthusiastic and has been on this diet the longest, so I know there is hope. I'm not happy about joining this stupid club, but at least I'm not the first member.
I will get through this, and things will get better. In fact, things will get greater. Right?!
Thursday, January 26, 2012
Day One:
Two words. Celiac Disease. And My life has been forever changed. I know, I should be jumping for joy, as I am now on my way to feeling better and have a diagnosis that doesn’t include an early demise (I hope), but let’s face the facts, people- plain and simple- this sucks. Anyone who tries to tell me otherwise has never tasted a fresh baguette in Paris. There must be phases of this disease, and I’m calling the first one pure and bitter rage. I’m pissed. It’s been a long road to this diagnosis, I’ll spare the details… the point is, I’m here and it totally sucks! I suppose the fact that I still feel horrible doesn’t help anything, and finding out about my fate on the heels of a ruptured ear drum (seriously!?) really only added icing to my now gluten-free cake (yuck). I’m like a toddler throwing a tantrum at this point and I’ve decided that I’m allowed at least a few days of stomping my feet and banging my fists on the wall. Because really, I’m never again going to have a good piece of bread in my life. Seriously?! I am thankful for all of the supportive people in my life, trying to put a positive spin on this ridiculous punishment, but right now I just need to vent. Unless you’ve been told you will never again have a Fiore’s garlic knot, or a piece of Pepe’s pizza, or Jimmy’s fried shrimp, you cannot possibly understand what I’m going through. I suppose this pity party will have to end at some point, I’m just not ready yet. There must be a bright light somewhere…. the only one I can see is the clock, which is telling me it’s 1:53 a.m., and I’m awake, and STARVING. Ha! My body is calling out in desperation for all of those wonderfully delicious foods that I’ve thoughtlessly shoved in for the last 31 years. Hmph. Well, at least I can still have french fries…..
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