After I moved to St. Louis I discovered a gluten free store/bakery about an hour from my home that I have visited on a number of occasions. They are, of course, quite expensive, but offered tasty food and retail items I had never found anywhere else. I didn't make it there on a regular basis having it so far away, and to be honest something seemed off in a way, every time I was there.
The owner seemed to be about the rudest, grumpiest person around. I would ask for information about doctors or other gluten free locations in the city and tips for gluten free cooking. Most of the time I couldn't even get an answer. I once placed an order that they were going to deliver to a grocery store closer to where I live and despite having a receipt showing I paid for the product when I picked it up the owner refused to let me purchase any other items until I paid again, as their records showed it had not been paid for. For the longest time I assumed that for whatever reason she just didn't like me, as I would see her being friendly to other customers in the store.
After almost four years of dealing with the place, on a whim I started to ask around to see if anyone else had a similar experience. The first people I asked were friends and family that had visited the store to purchase items for me. They too said that they were treated like they were inconveniencing the staff by being there. Then I asked other Celiac's that were customers there what their experiences were. Not a single person I talked to had a positive thing to say about the place, except that their products tasted good. The last person I asked is a fellow Celiac that I have gotten to know quite well by shopping at another gluten free bakery in the St. Louis area. As it turns out she knew the other owner quite well, agreed she was not a very nice person and does not have Celiac disease, or a family connection to any type of gluten intolerance.
This information inspired me to do some research and investigating of my own. I found out they stumbled into the gluten free business. The owner was manufacturing a few products that were naturally gluten free and a customer advised them if they advertised as gluten free they could make a killing. They apparently decided to set aside some of their product (which was EXACTLY the same as the other) and label it as gluten free and charge a few dollars extra. And it worked. This made them decide to start making other gluten free products and sell them for a large profit. Soon the store had turned into an exclusive gluten free locale.
During my investigation I met an employee. They were hesitant to share too much information regarding their experience but did say that they felt the company only existed to make as much money off gluten free consumers as possible and shared two examples with me. One was they host occasional gluten free vendor fairs and charge a hefty sum for companies that wish to buy a booth for the fair as well as charging a high price for admission. Doctors and lecturers were all volunteers, food and drinks were all at a cost so the company comes out of the vendor fair with a significant amount of money in their pockets. The second was when they have a new product they label it was a hefty price tag and slowly lower the price until the items sell. The goal being to sell them for the highest price possible while still moving products.
After learning all I did about this place I was absolutely furious. I am very much a capitalist, however, I couldn't help but feel taken advantage of. Here was a company with absolutely no idea about the disease, the lifestyle or the diet, and were making a product with the sole intent on making as much money as possible. They don't understand the financial burden of having a loaf of bread cost $8, or a box of spaghetti noodles going for about $4. They are preying upon a group of sick people.
I have made the personal decision that I will not shop there again. I have gotten to know other gluten free store/bakery owners that are in the business for the right reasons and live the lifestyle themselves. In fact my favorite bakery, New Day Gluten Free, takes a loss on certain items like their sandwich bread so that they can supply it to customers for a somewhat reasonable price. I understand not every place can make those types of sacrifices, but I would much rather give my business to a place that knows and cares about the lifestyle than someone who is just looking to make a quick buck off me. That all being said I would encourage everyone to look into the companies that supply their gluten free products and maybe we can start to make a difference in the price of our food!
Thursday, June 28, 2012
Tuesday, June 19, 2012
The Lonliness of Chronic Illness
For me, I think the hardest part of dealing with poor
health is that it is a lonely, lonely world. Sure there are people out there
that care and can empathize and, of course, there
are doctors, but it's not the same. Think of
it like this: When your fingers, ankles, and hips are aching, throbbing and
swollen; simple things like sitting,
walking, climbing stairs and touching your
fingers to your thumbs is not only extremely painful but not always possible.
Pain medications make you shaky and nauseous which upsets your already
sensitive stomach. Everything you eat seems to make your stomach worse; so you're literally afraid to eat. You put off
eating until your blood sugar gets low which makes you more nauseous and gives
you an unbelievable headache. Once you eat you start the game of trying to stay
as still as possible because if you move the food won't stay down. If you do
manage to keep food down, then it is only a matter of time before you begin to
have sharp stomach pains and potentially diarrhea. And...the
part that makes this so lonely is that no
one is inside your head feeling what you're feeling.
No one understands if you breathe wrong you're
going to get violently ill, or how frustrating it is when a simple task like
holding a fork is more than you can bear. No matter how much friends and family can empathize and doctors take down
details to study and diagnose there is no escape for the torture of living with
all of this, alone, inside you're own head.
I have tried my best to verbalize what this all feels like on a day to day basis, but it's hard to make someone understand that has never lived an hour in my body. It's impossible to imagine what it's like unless you've lived it. And the mental torture of trying to explain to someone only adds to the pain. For example, when meeting new people or talking to old friends and acquaintances, the inevitable question of, 'how do you feel?' always comes up. It has become one of the most agonizing questions because it is hard to verbalize the daily struggle that life has become. Or, how the most exciting thing that has happened to you that month is you have gone twelve days without throwing up. This all hits especially hard when compared to the goings on of people around you like graduations, new jobs, weddings and kids. There is a whole level of mental torture that is unseen, and for some reason seldom talked about.
Medications also play a big part in messing with my mind. They can make me sleepy, dizzy, emotional, restless, depressed, sick, and anxious, cause headaches, sensitivity to light, or make me unable to wake up. If the stress of the illness isn't enough, the side effects of medications is enough to push you over the edge. Sometimes nights are unbearable and it's yet one more aspect to this life that unless you've lived it you will never understand or fully appreciate. I don't intend for this to sound as bad as it probably will but after living through restless, stressful, emotional and nauseous nights I can see how people have accidentally overdosed on pain or sleeping medications just trying to get the pain and agony to stop. Think about this, don't just read it, really think about this and imagine how you'd feel: you're lying in bed at night, you can't stop an extreme restlessness and urge to move, when you do move your joints are so tender and swollen it hurts and makes the nausea worse, you're exhausted, you're on the verge of having an emotional breakdown from the stress and anxiety and medications, and the tears won't stop, the only thing in the world you want is just to fall asleep until it's all over. I've passed many nights this way or doing leg lifts on my bathroom floor in between throwing up, or walking stairs, praying it will all end and then waking up with tear stained pillows and tissues around my head.
Over the last few years I have lost touch with many friends due to my medical issues. I don't blame them or myself, everyone has to move on with their life but on those tough nights, or those impossible days, it still hurts. It hurts to see your friends and families lives going on with the feeling that life has left me stranded in limbo. I recently was watching a show about service men and women coming home from deployment and a sailor made a comment about how after deployment you come home and your six months behind the rest of the world so you have to play catch up. I thought about that for a while and it has left me a little envious. While he gets a chance to catch up, I don't. I will never have a break from the medications or the conditions, the stress or the feeling of being trapped in my own head. I also do not get a break to live life like a normal twenty five year old. I will probably never be able to finish college, I will probably never be able to hold down another job, or even own my own house. I won't be able to travel to the places I want to go, nor do all the things in this life that I would like to do. The only thing that's more painful than that realization is communicating it to those around and hearing their past adventures and plans for new ones.
I know that no one has ever thought life was fair, and these were the cards I was dealt so there is no point arguing with the dealer, however, it does make this life a very lonely place to be. Part of me wants to scream it out loud and force everyone around me to realize and understand what day to day life is like and how I feel in those agonizing hours. The other part wants me to lose myself in denial of what my reality is. For now I suffer in silence except writing here and talking with those few other lonely souls I come across, partially because as much as I try, no one will ever understand the life I live and partially because some days the pain is too much to communicate.
I would never wish my life on anyone, but I still wish I could make people understand. Understand things like how alone I sometimes feel in this world, and how there are times when I think I'd do anything if I could just make it all stop. If you happen to be reading this and have never dealt with issues like this I am begging you to stop and think about how your life would be different, and how lonely the world would be. Think about the blessings you have and that you don't pass your time in such ways, and the abilities and opportunities you have because not everyone does, and there are some people that would do almost anything to live a "normal" life like that.
I have tried my best to verbalize what this all feels like on a day to day basis, but it's hard to make someone understand that has never lived an hour in my body. It's impossible to imagine what it's like unless you've lived it. And the mental torture of trying to explain to someone only adds to the pain. For example, when meeting new people or talking to old friends and acquaintances, the inevitable question of, 'how do you feel?' always comes up. It has become one of the most agonizing questions because it is hard to verbalize the daily struggle that life has become. Or, how the most exciting thing that has happened to you that month is you have gone twelve days without throwing up. This all hits especially hard when compared to the goings on of people around you like graduations, new jobs, weddings and kids. There is a whole level of mental torture that is unseen, and for some reason seldom talked about.
Medications also play a big part in messing with my mind. They can make me sleepy, dizzy, emotional, restless, depressed, sick, and anxious, cause headaches, sensitivity to light, or make me unable to wake up. If the stress of the illness isn't enough, the side effects of medications is enough to push you over the edge. Sometimes nights are unbearable and it's yet one more aspect to this life that unless you've lived it you will never understand or fully appreciate. I don't intend for this to sound as bad as it probably will but after living through restless, stressful, emotional and nauseous nights I can see how people have accidentally overdosed on pain or sleeping medications just trying to get the pain and agony to stop. Think about this, don't just read it, really think about this and imagine how you'd feel: you're lying in bed at night, you can't stop an extreme restlessness and urge to move, when you do move your joints are so tender and swollen it hurts and makes the nausea worse, you're exhausted, you're on the verge of having an emotional breakdown from the stress and anxiety and medications, and the tears won't stop, the only thing in the world you want is just to fall asleep until it's all over. I've passed many nights this way or doing leg lifts on my bathroom floor in between throwing up, or walking stairs, praying it will all end and then waking up with tear stained pillows and tissues around my head.
Over the last few years I have lost touch with many friends due to my medical issues. I don't blame them or myself, everyone has to move on with their life but on those tough nights, or those impossible days, it still hurts. It hurts to see your friends and families lives going on with the feeling that life has left me stranded in limbo. I recently was watching a show about service men and women coming home from deployment and a sailor made a comment about how after deployment you come home and your six months behind the rest of the world so you have to play catch up. I thought about that for a while and it has left me a little envious. While he gets a chance to catch up, I don't. I will never have a break from the medications or the conditions, the stress or the feeling of being trapped in my own head. I also do not get a break to live life like a normal twenty five year old. I will probably never be able to finish college, I will probably never be able to hold down another job, or even own my own house. I won't be able to travel to the places I want to go, nor do all the things in this life that I would like to do. The only thing that's more painful than that realization is communicating it to those around and hearing their past adventures and plans for new ones.
I know that no one has ever thought life was fair, and these were the cards I was dealt so there is no point arguing with the dealer, however, it does make this life a very lonely place to be. Part of me wants to scream it out loud and force everyone around me to realize and understand what day to day life is like and how I feel in those agonizing hours. The other part wants me to lose myself in denial of what my reality is. For now I suffer in silence except writing here and talking with those few other lonely souls I come across, partially because as much as I try, no one will ever understand the life I live and partially because some days the pain is too much to communicate.
I would never wish my life on anyone, but I still wish I could make people understand. Understand things like how alone I sometimes feel in this world, and how there are times when I think I'd do anything if I could just make it all stop. If you happen to be reading this and have never dealt with issues like this I am begging you to stop and think about how your life would be different, and how lonely the world would be. Think about the blessings you have and that you don't pass your time in such ways, and the abilities and opportunities you have because not everyone does, and there are some people that would do almost anything to live a "normal" life like that.
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