not very well as of today. Ask me tomorrow; maybe I'll have a better outlook.
It's been a year since I've posted. A lot has happened in that past year, and looking back, not a lot of it is very uplifting. I truly miss blogging and the camaraderie of following "friends" blogs and hearing feedback on my own posts. Graduate school ate my life this past year, but just two more projects and then I will be done. I plan to never go to school again as long as I live. Good gravy, 20 years is enough!
I just reread some old blog posts, and my goodness do I sound young, naive, and whiny. If there's anyone still reading this....why did you continue to follow me? lol, I wish I were joking, but that's the nature of growing up. Our former selves no longer "knew" all we thought they did.
This is just a short note proclaiming my re-entry into the blog scene. Don't expect any updates until the semester is out. In case you're concerned, the goings on of the past year, despite how trying they have been and continue to be, have not taken a toll on my faith in Allah (swt) (although I don't "practice" Islam nearly so much as I should) or my marriage, mash'Allah. Insha'Allah I can count on that to be the case for the long haul.
Thursday, April 18, 2013
Monday, April 23, 2012
Islamic Swimwear
I've never been a fan of Islamic swimwear, or the "burkini" if you will. I've contemplated purchasing one on many different occasions, however, regardless of my feelings on their look, but always talked myself out of it.
The things I couldn't get around were:
a) cost
and
b) attached hood.
Islamic swimsuits are EXPENSIVE. At least to frugal ol' me. Any piece of clothing I purchase is within the $5-$30 range with very few exceptions for special occasions or outerwear (coats). I had a bikini back in high school that actually cost $80. My mom bought it for me for Easter though. Even she was upset with the cost but it was literally the only one that fit me right and covered enough for us both (me and my mother) to be comfortable. After that experience, bikini buying fell to me, and I probably never spent over $40 myself.
My first summer as a Muslim I was not fully covering yet so I bought board shorts and a short sleeved rash guard (think surfing) to wear swimming. The two combined were probably close to $50, and I wore it about twice, both times being uncomfortable. It's strange because you feel "too covered" when with your family (cousins, etc.) all in their bikinis, but yet not covered enough as a Muslim who knows you need to actually cover much more. So you're uncomfortable on two fronts!
Next you have the attached hood. Ooooh this hood has been the deterrent for dozens of swimwear purchases. I just think it's the goofiest looking thing. I wear hijab and feel pretty. I wear an attached swimhood and feel like a conehead.
So, a number of factors with the upcoming summer caused me to 'dive' back into the search for Islamic swimwear. The first is my son's age. At 3.5 he knows what swimming is, knows he wants to do it, and knows he wants Mommy to do it with him. The second is my husband's internship...in Louisiana. We'll be an hour from the beach, the apartment has a pool and 'whirlpool' and I have no desire to just sit on the sidelines.
Ignoring the cost aspect and telling myself the next article I edit will almost pay for the suit (which is true), I ordered a two piece hoodless suit from Splashgear.
It was this suit only with no hood (the hood is a third piece for an additional $15) and flowered pants instead of the plain black (about $102 USD including shipping). Well, using the size chart I ordered small bottoms and a medium top. It was huge! The bottoms were ridiculously baggy and the sleeves of the top were too long and it just looked sloppy. I planned on exchanging it for a smaller size in navy blue (with navy blue flowered pants). I would be out return shipping but I knew with the current fit of the suit I would never wear it.
Well, suddenly, my husband decides he does not like this suit at all. He says he thinks the flowered pants look goofy. I counterargued that the plain pants did not look like me at all, which he agreed, so the decision was made to simply return the suit and continue the search.
The very next day I was excited to find a hoodless option at Modestly Active. Without even receiving the $90+ back for the former suit (which is still pending, insha'Allah soon!) I ordered the suit shown right for about $110 USD. It shipped from the UK super fast arriving today.
Much to my dismay, however, they did not send the right suit! They sent the exact same suit, but with a hood!
I promptly e-mailed the company as to how to remedy the situation without having to pay return shipping to the UK. While waiting for their response, I decided to try the suit on.
The hood is just as ridiculous as feared. HOWEVER, after ordering the hoodless option (with the intention of wearing a normal shayla hijab with it) I started to worry that I would not be allowed to swim with a hijab in public pools and water parks, etc. (making my purchase not so useful). I played around with the hood and no, could not make it look good to me or my husband, but was happy with a shayla wrapped around it. Also, the hood can be pulled down without looking too silly if you're with women, family, etc.
I had convinced myself that the hood was a good mistake, when I received an e-mail from the company saying they'd send out the hoodless asap and transfer return shipping $$ to my paypal account to send back the hooded suit.
So now I'm waiting to hear if they received my e-mail saying "No! Please don't fix your mistake! I like the hood!" lol. So yes, the hood looks funny, but if swimming at a public pool or park with regulations, there's a good chance hijabs will be seen as dangerous/unhygenic/not allowed, so the hood is a necessary option. However, at the beach, private pools, etc. I will take advantage of the option to wrap a shayla around it making it more feminine and less alien. I apologize for the poor quality photos! I was using my phone and the lighting is bad, etc. I just wanted to give you a visual of the hood and the hood w/hijab (how I hope to wear it!)
The things I couldn't get around were:
a) cost
and
b) attached hood.
Islamic swimsuits are EXPENSIVE. At least to frugal ol' me. Any piece of clothing I purchase is within the $5-$30 range with very few exceptions for special occasions or outerwear (coats). I had a bikini back in high school that actually cost $80. My mom bought it for me for Easter though. Even she was upset with the cost but it was literally the only one that fit me right and covered enough for us both (me and my mother) to be comfortable. After that experience, bikini buying fell to me, and I probably never spent over $40 myself.
My first summer as a Muslim I was not fully covering yet so I bought board shorts and a short sleeved rash guard (think surfing) to wear swimming. The two combined were probably close to $50, and I wore it about twice, both times being uncomfortable. It's strange because you feel "too covered" when with your family (cousins, etc.) all in their bikinis, but yet not covered enough as a Muslim who knows you need to actually cover much more. So you're uncomfortable on two fronts!
Next you have the attached hood. Ooooh this hood has been the deterrent for dozens of swimwear purchases. I just think it's the goofiest looking thing. I wear hijab and feel pretty. I wear an attached swimhood and feel like a conehead.
So, a number of factors with the upcoming summer caused me to 'dive' back into the search for Islamic swimwear. The first is my son's age. At 3.5 he knows what swimming is, knows he wants to do it, and knows he wants Mommy to do it with him. The second is my husband's internship...in Louisiana. We'll be an hour from the beach, the apartment has a pool and 'whirlpool' and I have no desire to just sit on the sidelines.
Ignoring the cost aspect and telling myself the next article I edit will almost pay for the suit (which is true), I ordered a two piece hoodless suit from Splashgear.
It was this suit only with no hood (the hood is a third piece for an additional $15) and flowered pants instead of the plain black (about $102 USD including shipping). Well, using the size chart I ordered small bottoms and a medium top. It was huge! The bottoms were ridiculously baggy and the sleeves of the top were too long and it just looked sloppy. I planned on exchanging it for a smaller size in navy blue (with navy blue flowered pants). I would be out return shipping but I knew with the current fit of the suit I would never wear it.
Well, suddenly, my husband decides he does not like this suit at all. He says he thinks the flowered pants look goofy. I counterargued that the plain pants did not look like me at all, which he agreed, so the decision was made to simply return the suit and continue the search. The very next day I was excited to find a hoodless option at Modestly Active. Without even receiving the $90+ back for the former suit (which is still pending, insha'Allah soon!) I ordered the suit shown right for about $110 USD. It shipped from the UK super fast arriving today.
Much to my dismay, however, they did not send the right suit! They sent the exact same suit, but with a hood!
The hood is just as ridiculous as feared. HOWEVER, after ordering the hoodless option (with the intention of wearing a normal shayla hijab with it) I started to worry that I would not be allowed to swim with a hijab in public pools and water parks, etc. (making my purchase not so useful). I played around with the hood and no, could not make it look good to me or my husband, but was happy with a shayla wrapped around it. Also, the hood can be pulled down without looking too silly if you're with women, family, etc.
 |
| How I hope to wear it dependent upon pool policies. |
 |
| A necessary evil. |
So now I'm waiting to hear if they received my e-mail saying "No! Please don't fix your mistake! I like the hood!" lol. So yes, the hood looks funny, but if swimming at a public pool or park with regulations, there's a good chance hijabs will be seen as dangerous/unhygenic/not allowed, so the hood is a necessary option. However, at the beach, private pools, etc. I will take advantage of the option to wrap a shayla around it making it more feminine and less alien. I apologize for the poor quality photos! I was using my phone and the lighting is bad, etc. I just wanted to give you a visual of the hood and the hood w/hijab (how I hope to wear it!)
Thursday, March 8, 2012
Does anyone read this anymore?
Just in case someone does, short recap time!
Hijab - still wear it 100% of the time in Kentucky, 40% of the time in Indiana (any time I'm not around my parents).
Prayer - REALLY struggling lately. I was doing the best I've ever done during Ramadan and now I've totally lost it. This semeste'rs work load starting the trend and it's become a habit. I do more du'a now than in the past, but I realize the ritual prayer is the most important and I need to do a lot better.
School - A day or two before the semester began the college e-mailed me saying, "your program is being cancelled. You must finish within the next three semesters. Plan accordingly." Well, my plan had been to take one course a semester. It's graduate school, it's hard, I've got a son, and I work (more on that later). I was in no hurry to rush through. So, I had to add a class this semester (and all of the following) as well as take courses this summer in order to get done on time. Thankfully, my complaints about finding tuition money for these extra unplanned courses resulted in about $2000 heading my way. Yay for school being paid for!
Work - I am still an Independent Consult for Thirty-One Gifts but am planning on retiring at the end of April. There are multiple reasons for this: a) I am too busy with other things to give the business the time it requires to succeed, b) everyone is poor right now and doesn't have money to spend on bags/purses, c) I think I'm annoying my friends, d) it's a Christian company and I feel like a fraud, e) 5 months in and I've still spent more than I've made, and f) new catalog is released May 1, I can't afford another catalog launch (new supplies, etc. etc.).
More work - I am happily working as proofreader/editor for The New Muslim Survey, found here: http://www.thenewmuslimsurvey.org/ . Take the survey; make your voice heard! :) Any errors found on the website are not my fault! I edit the articles only, the little website "blurbs" were typed without my input. :/
Family - My family still does not like that I'm Muslim. My mom is getting better, though she wouldn't admit it. She cooks separate zabiha food for us, called me the other day about a sale on long sleeved layering shirts at Wal-Mart, etc. I openly show my brother pictures of me in hijab. My grandmother's could both use a great deal of prayer. Alzheimers seems to be winning more each day. :(
Friends - I HAVE FRIENDS IN KENTUCKY! One night last fall I had four (Muslim) women in the park ask me to join them and I thought I was on my way out of loneliness. When they found out my husband was Shi'a, however, they never got ahold of me again UNTIL months later, one of them had the audacity to ask for help with her research paper. I had tried to get ahold of her in the past hoping to go to the park for a gathering again or something but was ignored. So, no, I didn't help her with her paper. I am an extremely nice person, often too nice for my own good, but this time it was NOT happening.
I did meet one friend, during that time period, who has since moved in next door (thanks to my pleas to the landlord). I thought I was happy with just one friend, my husband and son, my stressful schooling, and my random attempts at work. However, I met another woman at the beginning of this semester. My son hit her in the eye with a toy tent pole, so I thought the friendship came to a halt before it started. Weeks later, though, she called and invited me to go to a gym with her. She said it was a woman's gym, so I thought I was going to a Curves or something. She then told me we'd be going from 9 - 10:30 at night. I thought it odd, but I was up for it. Turns out, it's a co-ed gym during the day, but on Tuesday and Thursday nights, it's Muslim women only!!!!! Basically, it's amazing. I feel I've made three good friends through going (and I've only been five times), and a lot of nice acquaintances. It's SOOOO nice to feel comfortable exercising! T-shirts, tight pants or capris, no hijab! It's just a really wonderful experience and just seems so out of place in small town southern Kentucky. It's a college town so there are a LOT of Muslim women at this gym. And it's all been spread by word of mouth. Additionally, Muslim women are just more fun to work out with. Nobody's there to get all muscular, we're just there to get/stay fit, and take care of ourselves. Also, there is not that level of self-consciousness that I've experienced in the past (pre-Muslim days). When it's Zumba time, even if you suck at Zumba, you give it a shot. If someone (or everyone) drops out (needs a break, too tired, etc.) you can stand there and do Zumba by yourself and nobody will bat an eye. I've never experienced such a thing.
So, in addition to giving me a HUGE social boost, I feel great from working out regularly and am honestly much happier with myself. I've never been fat, needed to lose weight, etc. But I certainly was not healthy either, with my food choices and sitting with a computer all the time.
Reading - Benazir Bhutto's "Reconciliation." Just a short bit in but it seems like something everyone should read, especially in the west with all the crazy Muslim propaganda
Politics - suck. Since it looks like Ron Paul can't win the nomination, I guess I'll have to vote Obama again.
International affairs - suck. What about Bahrain people, what about Bahrain? I know Syria is no less bad due to Bahrain experiencing something similar. However, it really irks me how the U.S. is all (especially John McCain) "we've got to do something!" when they're selling arms to Bahrain and in cohoots with Saudi Arabia who is killing protestors in their own country and in Bahrain. Seriously, people. Seriously.
And Iran? If we go to war with Iran here comes World War III, and here comes me moving to Canada. I'm tired of living in a country that protects "the interests of Israel" despite whether it's morally right or even practically right (think military we just brought home). I'm also tired of living in a country who thinks everyone's business is their own. We've got a shitload of problems here at home, they (Afghanistan, Iraq, Libya, Syria) don't want your "help" anyway, so let's just fix ourselves first, mmkay?
I think that's it. I want to write a book. Like, for publication. But I am totally drawing a blank on ideas. A memoir would be interesting, but at this stage in my life entirely too personal (unless published anonymously, which isn't recommended). Any ideas? I'm sarcastic which comes off in my writing. Keep that in mind. :)
Hijab - still wear it 100% of the time in Kentucky, 40% of the time in Indiana (any time I'm not around my parents).
Prayer - REALLY struggling lately. I was doing the best I've ever done during Ramadan and now I've totally lost it. This semeste'rs work load starting the trend and it's become a habit. I do more du'a now than in the past, but I realize the ritual prayer is the most important and I need to do a lot better.
School - A day or two before the semester began the college e-mailed me saying, "your program is being cancelled. You must finish within the next three semesters. Plan accordingly." Well, my plan had been to take one course a semester. It's graduate school, it's hard, I've got a son, and I work (more on that later). I was in no hurry to rush through. So, I had to add a class this semester (and all of the following) as well as take courses this summer in order to get done on time. Thankfully, my complaints about finding tuition money for these extra unplanned courses resulted in about $2000 heading my way. Yay for school being paid for!
Work - I am still an Independent Consult for Thirty-One Gifts but am planning on retiring at the end of April. There are multiple reasons for this: a) I am too busy with other things to give the business the time it requires to succeed, b) everyone is poor right now and doesn't have money to spend on bags/purses, c) I think I'm annoying my friends, d) it's a Christian company and I feel like a fraud, e) 5 months in and I've still spent more than I've made, and f) new catalog is released May 1, I can't afford another catalog launch (new supplies, etc. etc.).
More work - I am happily working as proofreader/editor for The New Muslim Survey, found here: http://www.thenewmuslimsurvey.org/ . Take the survey; make your voice heard! :) Any errors found on the website are not my fault! I edit the articles only, the little website "blurbs" were typed without my input. :/
Family - My family still does not like that I'm Muslim. My mom is getting better, though she wouldn't admit it. She cooks separate zabiha food for us, called me the other day about a sale on long sleeved layering shirts at Wal-Mart, etc. I openly show my brother pictures of me in hijab. My grandmother's could both use a great deal of prayer. Alzheimers seems to be winning more each day. :(
Friends - I HAVE FRIENDS IN KENTUCKY! One night last fall I had four (Muslim) women in the park ask me to join them and I thought I was on my way out of loneliness. When they found out my husband was Shi'a, however, they never got ahold of me again UNTIL months later, one of them had the audacity to ask for help with her research paper. I had tried to get ahold of her in the past hoping to go to the park for a gathering again or something but was ignored. So, no, I didn't help her with her paper. I am an extremely nice person, often too nice for my own good, but this time it was NOT happening.
I did meet one friend, during that time period, who has since moved in next door (thanks to my pleas to the landlord). I thought I was happy with just one friend, my husband and son, my stressful schooling, and my random attempts at work. However, I met another woman at the beginning of this semester. My son hit her in the eye with a toy tent pole, so I thought the friendship came to a halt before it started. Weeks later, though, she called and invited me to go to a gym with her. She said it was a woman's gym, so I thought I was going to a Curves or something. She then told me we'd be going from 9 - 10:30 at night. I thought it odd, but I was up for it. Turns out, it's a co-ed gym during the day, but on Tuesday and Thursday nights, it's Muslim women only!!!!! Basically, it's amazing. I feel I've made three good friends through going (and I've only been five times), and a lot of nice acquaintances. It's SOOOO nice to feel comfortable exercising! T-shirts, tight pants or capris, no hijab! It's just a really wonderful experience and just seems so out of place in small town southern Kentucky. It's a college town so there are a LOT of Muslim women at this gym. And it's all been spread by word of mouth. Additionally, Muslim women are just more fun to work out with. Nobody's there to get all muscular, we're just there to get/stay fit, and take care of ourselves. Also, there is not that level of self-consciousness that I've experienced in the past (pre-Muslim days). When it's Zumba time, even if you suck at Zumba, you give it a shot. If someone (or everyone) drops out (needs a break, too tired, etc.) you can stand there and do Zumba by yourself and nobody will bat an eye. I've never experienced such a thing.
So, in addition to giving me a HUGE social boost, I feel great from working out regularly and am honestly much happier with myself. I've never been fat, needed to lose weight, etc. But I certainly was not healthy either, with my food choices and sitting with a computer all the time.
Reading - Benazir Bhutto's "Reconciliation." Just a short bit in but it seems like something everyone should read, especially in the west with all the crazy Muslim propaganda
Politics - suck. Since it looks like Ron Paul can't win the nomination, I guess I'll have to vote Obama again.
International affairs - suck. What about Bahrain people, what about Bahrain? I know Syria is no less bad due to Bahrain experiencing something similar. However, it really irks me how the U.S. is all (especially John McCain) "we've got to do something!" when they're selling arms to Bahrain and in cohoots with Saudi Arabia who is killing protestors in their own country and in Bahrain. Seriously, people. Seriously.
And Iran? If we go to war with Iran here comes World War III, and here comes me moving to Canada. I'm tired of living in a country that protects "the interests of Israel" despite whether it's morally right or even practically right (think military we just brought home). I'm also tired of living in a country who thinks everyone's business is their own. We've got a shitload of problems here at home, they (Afghanistan, Iraq, Libya, Syria) don't want your "help" anyway, so let's just fix ourselves first, mmkay?
I think that's it. I want to write a book. Like, for publication. But I am totally drawing a blank on ideas. A memoir would be interesting, but at this stage in my life entirely too personal (unless published anonymously, which isn't recommended). Any ideas? I'm sarcastic which comes off in my writing. Keep that in mind. :)
Friday, December 16, 2011
insert expletive here
The USCIS is 100% inept, not concerned with the welfare of its' citizens, citizens to be, or residents, and...
can kiss my ass.
I am so mad right now. I feel like burning something down. In high school I used to joke about burning the school down, but any issue I had with my school pales in comparison to the wrong the USCIS has done.
Hate. Hate. Hate. Is all I feel.
We passed our immigration interview in early April. We received a notification that the green card should be arriving in a few weeks. No card ever arrived. We called multiple times and were finally told that the card was mailed, must have been "lost" in the mail (although our internet status STILL shows the card as never having been mailed) and that we'd have to submit a new application along with $450 additional dollars (in addition to the upwards of $2000 already submitted), for a mistake that IS IN NO PART OURS.
We were told we could check with the post office, in August, on where it might be. But were given no tracking number. That doesn't make a damn bit of sense.
In September we filed again, but filed as having "never received the card" which does not require payment. A response from the September application did not come until TODAY. A denial. Because we were "mailed a card." They now suddenly provide us with a tracking number (Which was never offered...and I think was even denied existence, before). Of course it's too late to track it now. We tried online to no avail. I will call the post office tomorrow but it's probably a lost cause. And if THEY have a tracking number, how did THEY allow it to get lost!? What the %$@#!
Now we have to apply again, pay the $450 f-ing dollars that we don't have (we barely pay all our bills) and wait another 3+ months to see if this fiasco can finally resolve. My husband could graduate this summer, but is holding off because if he doesn't have the card, he can't graduate (he'd be made to leave/couldn't find a job, etc.).
Have I mentioned I'm angry? I'm tempted to get an attorney involved (we had an attorney through the whole application process, which is why it cost so much), but I don't want to pay $200 an hour to save $450...because I feel there's really nothing even they can do against the U.S. government.
AGH!! That's the sound of me screaming while banging my head against a wall.
can kiss my ass.
I am so mad right now. I feel like burning something down. In high school I used to joke about burning the school down, but any issue I had with my school pales in comparison to the wrong the USCIS has done.
Hate. Hate. Hate. Is all I feel.
We passed our immigration interview in early April. We received a notification that the green card should be arriving in a few weeks. No card ever arrived. We called multiple times and were finally told that the card was mailed, must have been "lost" in the mail (although our internet status STILL shows the card as never having been mailed) and that we'd have to submit a new application along with $450 additional dollars (in addition to the upwards of $2000 already submitted), for a mistake that IS IN NO PART OURS.
We were told we could check with the post office, in August, on where it might be. But were given no tracking number. That doesn't make a damn bit of sense.
In September we filed again, but filed as having "never received the card" which does not require payment. A response from the September application did not come until TODAY. A denial. Because we were "mailed a card." They now suddenly provide us with a tracking number (Which was never offered...and I think was even denied existence, before). Of course it's too late to track it now. We tried online to no avail. I will call the post office tomorrow but it's probably a lost cause. And if THEY have a tracking number, how did THEY allow it to get lost!? What the %$@#!
Now we have to apply again, pay the $450 f-ing dollars that we don't have (we barely pay all our bills) and wait another 3+ months to see if this fiasco can finally resolve. My husband could graduate this summer, but is holding off because if he doesn't have the card, he can't graduate (he'd be made to leave/couldn't find a job, etc.).
Have I mentioned I'm angry? I'm tempted to get an attorney involved (we had an attorney through the whole application process, which is why it cost so much), but I don't want to pay $200 an hour to save $450...because I feel there's really nothing even they can do against the U.S. government.
AGH!! That's the sound of me screaming while banging my head against a wall.
One of My Favorite Pictures
 |
| My MIL and I, masha'Allah. Playing on the swings and eating ice cream. :) |
Saturday, November 5, 2011
My son, Mash'Allah :)
So I was in K-Mart, sans hijab. I didn't have it on for a stupid reason, and so when I saw a hijabi shopping, I felt ashamed...and kind of ignored her. (We weren't close so it wasn't rude ignoring, I just didn't go out of my way to salaam). Well, I've apparently instilled better Islamic manners in my son than myself, because Noah, just shy of three, sees this woman in a hijab, marches up and screams "Asalamu'alaykum!!!" I was still ashamed at not wearing hijab, but this started a conversation between this woman and myself that would have never happened otherwise. Her family is from Libya, and she learned mine and my husband's backgrounds. I met her four children (and my son screamed "asalamu'alaykum" at every one of them in turn) and she met my one. My son grabbed her youngest, a sweet little girl in a beautiful dress, masha'Allah, and proclaimed that we were taking her with us, lol. (He WANTS a baby, and I keep telling him to take it up with his father, because if it were up to me...) Anyway, it was just a really wonderful encounter between two families that would have never happened if it wasn't for my wonderful son, masha'Allah.
Just wanted to share! It's sooo late or I would have elaborated. :)
Just wanted to share! It's sooo late or I would have elaborated. :)
Wednesday, October 26, 2011
Raising FPIES Awareness and Our Personal Story
PLEASE READ THIS! Even if you don't want to shop or donate, my main concern is raising awareness of this condition. Educate yourselves, pretty, pretty please and thank you!
Our main source of guidance throughout this rocky journey has been other FPIES parents, online, who have been fortunate enough to live near doctors familiar with the condition. The FPIES United Family Fund was started by a mother just like me, a mother who needed answers for her son’s health and well being. I am proud to join her in her efforts to support this worthy cause. It is unlikely that research results will help Noah, but our vision is to help all of the FPIES children and parents that come after us. Everyone deserves the opportunity to feed their child without guilt. Many current FPIES families are finding this sample task, so often taken for granted, impossible.
Nikki, of Stiving to Be the Best Me, and FPIES United Family Fund invite you to shop for a cause and a cure!
What is FPIES? Food Protein Induced Enterocolitis Syndrome (FPIES) is a non-IgE allergy. The symptoms of this type of allergic reaction are delayed and include repetitive vomiting that may not start for a few hours following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea filled with blood, mucous and undigested foods that starts later. In some cases, the reaction includes hypotension and lethargy. Occasionally, the child becomes so severely dehydrated from uncontrollable vomiting and diarrhea that they run the risk of shock. The treatment is symptomatic and can include hospitalization for IV fluids and steroids. The latter is given because the pathophysiology is that of a T-cell response
Why do we need your help? FPIES is a condition that mainly affects infants and young children. Many families have had to fight for months or even years to obtain a proper diagnosis for their child’s recurrent flu-like symptoms and hospitalizations. There is no diagnostic testing available for FPIES so many children go undiagnosed, leaving them at high risk for unreparable gut damage, failure to thrive, speech delay, food and texture aversions, or even life threatening shock. Established in September 2010, the FPIES United Family Fund is the first and only grassroots research fund for FPIES worldwide. Currently, the FPIES United Family Fund is pleased to become a funding resource for FPIES research in the newly developing Food Allergy Center at the Children’s Hospital of Philadelphia (CHOP). The Food Allergy Center has developed very ambitious goals and hopes to prevent, and one day eradicate, all food allergies and their accompanying life-threatening dangers and lifestyle hardships that affect a dramatically increasing population of allergy patients. In just over a year, FPIES parents from across the nation have worked together to raise $37,000. Unfortunately, The Food Allergy Center cannot begin research until we raise a total of $300,000
How can you help? It’s easy! All you need to do to help us help these children is to shop at my personal Thirty-One website: www.mythirtyone.com/Lquraish/. As an independent consultant, I am paid a 25% commission off of every order placed through my site. Simply choose the FPIES Fundraiser event when placing your order between Thursday, October 13 – Saturday, October 29, 2011, and I will donate all of my commission to the FPIES United Family Fund in support of FPIES research.
Personal Story: My son was breast fed exclusively until at 6 months of age we introduced oatmeal. He seemed to eat it just fine, but then he started what seemed like sporadic episodes of vomiting. Looking back there were many days when he would suddenly vomit two to five times, fall immediately asleep, and wake up as though nothing had ever happened. Finally, after many of these episodes, my mom-tuition kicked in and started connecting the dots to oatmeal. What prolonged my confusion was the fact that the vomiting always occurred at least two hours following ingestion of the food. I was stumped. We visited his pediatrician only to be told that allergy to oats was almost unheard of, and all of these episodes, sometimes occurring as frequently as every other day, were independent bouts of the flu. After seeing us multiple times, they finally conceded that oats may not agree with Noah, and told us to avoid them.
Noah started having reactions following the ingestion of other foods, though, and he was eating such a variety at this point that it was hard to pinpoint and remove the offensive foods. At just shy of 11 months of age, Noah ate a meal of squash and egg yolk, both later found to be known triggers. The combined reaction caused Noah to vomit 9+ times and become lethargic and almost completely unresponsive. He was rushed to the ER. Noah was suffering from life threatening shock, yet the hospital, didn’t believe that this reaction could be food related, and performed a whole series of unrelated tests (CAT scan, EKG, spinal tap, x-rays) before giving him the life saving IV that he truly needed. Noah was so lifeless that he barely flinched when the stuck him with needle after needle trying to find a vein for an IV. After being pricked at least 10 times, nurses from the NICU were finally called in to administer an IV drip in Noah’s temple. The IV brought him back to life, but severe diarrhea and unknown test results kept him in the hospital for five days. His diagnosis upon release: the flu. This terrifying episode led us to specialist after specialist and test after test. Noah was at one point only able to eat apples, bananas, pears, breastmilk, and Neocate (a hypoallergenic, very costly formula). His first birthday cake was simply a banana.
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| Noah suffering from a life threatening shock reaction at just 10 months of age. It took another 10 months for an FPIES diagnosis. |
After 10 months of doctors we finally had an allergist agree with us that FPIES was the proper diagnosis. Instead of treatment options, in office trials, or guidance, though, we were told, “Whatever you’re doing seems to be working.” We were left to trial new foods on our own, with the fear that another trip to the ER was inevitable, and that the hospital would give us the go around of tests again. It’s now been over a year since we’ve visited a doctor regarding Noah’s FPIES. Noah is thriving so long as his diet is free of his seven known triggers: rice, oats, sweet potatoes, green beans, squash, chicken, and eggs. His third birthday is coming up which means a retrial of his first fails is in order, to see if he is outgrowing the condition at all. To say that I am terrified is an understatement.
Donations can also be sent directly to:
CHOP Foundation
Attention:FPIES UNITED FAMILY FUND
Lock box #1352
PO Box 8500
Philadelphia, PA 19178-1352
**PLEASE BE SURE TO SPECIFY FPIES UNITED FAMILY FUND ON YOUR ENVELOPE AND CHECK**
Attention:FPIES UNITED FAMILY FUND
Lock box #1352
PO Box 8500
Philadelphia, PA 19178-1352
**PLEASE BE SURE TO SPECIFY FPIES UNITED FAMILY FUND ON YOUR ENVELOPE AND CHECK**
For more information, please visit the following:
http://giving.chop.edu/site/TR?pg=fund&fr_id=1030&pxfid=6824
http://www.thefpiesfoundation.org/
http://abcnews.go.com/GMA/video/parents-limit-child-10-foods-rare-allery-14018160
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