Category Archives: Allergy

Port-Free and In Remission

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Monday, June 14, 2010 I got my port out. The gynecological oncologist and the hematologist / oncologist said ok! I made the appointment to remove it fast.

Removing a port is an in-office procedure. They give you a numbing agent, make a cut, and pull it out (with care). Then they stitch you up. I had a rather common reaction while they were pulling the port out – I almost fainted. I got to sit still for 10 minutes or so afterwords to make sure I didn’t pass out walking out.

I guess the screams of pain when they gave me the local had already scared too many waiting patients. I have really sensitive skin.

I bet some of you are wondering what my CA-125 was? It was a completely normal and remission fulfilling 10!

Of course, my pekinese is irritated at me for not picking him up while that wound heals.

Now the irritating news.

It seems I have a rather common tongue fungal infection that the periodontist found. He sees it in cancer survivors all the time. I have one problem. Even though Majic Mouthrinse is compounded the suspension solution used uses benzyl alcohol (allergic) and two corn derivatives: sorbitol and glycerin. I tried to tell the periodontist this while I was there, but he said it was compounded. Now I have to figure out what to do to treat this problem.

Kosher for Passover a God Send for the Corn Allergic

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Every year I go on a shopping spree during the weeks preceding Passover. Corn has infiltrated almost everything eaten in the USA – except for this small pocket of time things like Coca-Cola and marshmallows are available without corn.

Normally, I would have been shopping more than one day – and would get a real supply of Kosher for Passover treats. This year? The head cold that took a good part of Southeastern Michigan out for at least a week. First it hit me, then my DH.

On the day I decided to do the Kosher for Passover shopping, his majesty, SMR fell off the bed and we had to spend most of the day at the veterinarian! It seems the little guy has developed really bad arthritis on one of his front elbows, and a milder case in his other front elbow. He is now on puppy pain medication for it.

So, I got all of 2 hours to hit the main Kosher Kroger in our area. The Kosher for Passover section they normally have was much smaller than I remembered from past years. This might be because I usually shop before Passover actually starts.

So, to all of the Ashkenazi Jews who keep strict Passover dietary rules – meaning no corn or beans – I say THANK-YOU!

A Week of Doctors and Veterinarians

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This week I had an appointment with my gynecological oncologist, Dr. Sunshine, as well as my normal monitoring appointments. (When doing chemotherapy, you get a lot of blood drawn – not as much as during IVF, but close.) I also had to take my poor, itching (from allergies) pekingese to the veterinarian.

Dr. Sunshine had to inform me that I have to stay on pain killers until after chemo because with the nature of the chemo I have, it is just too hard to try and wean off of them until after I am done with my last two chemos. I am on the lowest possible dose, but I still don’t like it. He answered a bunch of questions we had had that only he could really answer – if there were answers. Overall, it was a good appointment even if we did wait two hours to see him. (Practicing out of 11 hospitals means you are a very busy man.) I did chide him about not having anything for Ovarian Cancer Awareness month. (My post is coming for this after Labor Day.)

My poor pekingese! Not only is he itching up a storm, he has developed a bad urinary tract infection with bladder stones. I nearly broke down in tears at the vet’s office when she told us he needed surgery. DH and I don’t want him to go into surgery until his itching and scratching are under control. He has been waking us up in the wee hours of the morning scratching his back and barking in frustration as a very itchy dog will do.

Here is the problem, benadryl does nothing for my pekingese. In the past we have always had to put him on steroids for about two weeks every year. Since it was such a limited time, we didn’t feel he needed shots or such. My mother’s peke is going to start allergy shots, so it isn’t like we wouldn’t do it if we thought it was necessary. While I was in the hospital, SMR developed his urinary tract infection and we had to take him off the steroids and on antibiotics. This meant his itching came back with a vengeance.

Oh, did I mention that to prevent itching means minimizing his time outside while keeping his stones under control until surgery means having him out to pee as often as possible?

Now, the vet finally told us it is ok to give him loratadine for allergies. This seems to be working better for his itching than anything less than steroids has ever.

This was supposed to have been DH’s vacation week and we spent 7 hours in various doc’s offices. Some vacation, huh?

Synchronicity, Anaphylaxis, CarboTax, and Chemo Thursday : This Is In My RSS Feed

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I was feeling comfortable after my Monday meeting with Ms. Clarity and The Chemo Nurses. I got my calendar, and Tuesday got my go ahead to move forward. The port worked well – and they used a numbing agent so I didn’t feel it when she put the needle in to take the blood for my CBC, CA-125, BRCA 1/2, and HNPCC (Lynch Syndrome) tests.

While I was there, Ms. Clarity spoke with my allergist who advised the addition of an H1 blocker as well as an H2 blocker and steroids to my overall protocol. This is a double whammy against histamine production – to way oversimplify things. I haven’t found a good explanation online from a trusted source. Anyway, histamine is what causes allergic symptoms to occur. By blocking those from occurring, the hope is that no reaction will occur – or, if a reaction does occur it will be quickly counteracted.

At this point, I’m feeling a little nervous due to my reading up on carbotax and my own medical history. I have been living a bit too much of the outlier life for my comfort when it comes to medicine. So, just as I am about to embark on the chemotherapy protocol with minimal worry, what comes across my allergy medical news feed, not once, but twice:

Fatal Allergic Reactions Triggered By Common Chemotherapy Drug

A new study from the Research on Adverse Drug Events and Reports (RADAR) pharmacovigilance program at Northwestern University Feinberg School of Medicine identified 287 unique cases of hypersensitivity reactions submitted to the FDA’s Adverse Event Report System between 1997 and 2007 with 109 (38 percent) deaths in patients who received Cremophor-based paclitaxel, a solvent-administered taxane chemotherapy. — Medical News Today

The article went on to state that certain of these reactions happened despite pre-medication. If you are atopic enough, it doesn’t really matter, and I know this. Doing a quickie search with the terms “anaphylaxis taxol” search at PubMed (the Internet face of the older face of Medline), you get 41 hits with the oldest from 1993. Some of them are more encouraging than others, but the overall outlook is less than bright.

Even the rapid desensitization information I came across advised one-on-one nursing care with a resuscitation team on site. Desensitization doesn’t normally include one-on-one nursing. Of course, rapid desensitization is more dangerous.

Now, I dislike it when synchronicity is being too active. That just makes me nervous. I don’t trust synchronicity. Like any irrational human being – and all of us are irrational to some degree, no matter our education or claims otherwise – I find this a little bit unnerving. The information wasn’t particularly new, but the timing couldn’t have been weirder.

Do I believe this is a sign from the universe? Not really. But, it does make one ponder why this was in my allergy feed at just this moment in time. That is just weird.

Dr. Professor and Ms. Clarity Update

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We had the post port / pre-chemo visit Thursday afternoon. It was interesting. Thank goodness I had brought a book that I had just started.

We arrived at 1:15 and immediately heard the doctor being paged to call the ER – never a good sign for a quick visit. Of course, immediately after that we heard at least two calls from other physicians calling him. And, then the waiting room starting piling up.

I’m glad I had book to keep my nose in. Of course, there was a heavily pregnant couple in the small waiting room. They were, thankfully, being very unobtrusive. Then the mother, father and small child came in. This is not a waiting room most small children would be comfortable in. Thankfully, the father did take the child out as s/he was getting very agitated at being stuck in such an unstimulating environment.

Why don’t parents bring a favorite toy or something if they are coming to a non-peds doctor? I mean, doesn’t that just make sense? I seem to recall always having either a book or some game with me when I was a kid. Even small children have games that can entertain them. I’ve seen it when I worked in the children’s section of the library.

Anyway, we finally got in to see the doctor about 2 hours after we arrived. Yes, I said 2 hours. Now, he is usually not running that late, but when the ER calls and other doctors are calling, you know the office has become a zoo.

Once in the room, I explained, once again my concerns about the drugs. Thankfully, one of the chemo nurses wrote everything down and is calling the drug company to check formulations against my allergies! In an attempt to reassure me, Dr. Professor explained the minuscule odds, even among atopic patients, of a reaction. My answer was, “I seem to be living in outlier land right now.” He had to concede that was true.

Ms. Clarity was then reassuring me that they would be watching me very closely the entire time. And, she explained that they have epinephrine, and, if absolutely necessary, I would be sent via 911 to the hospital. Subsequent chemo would then need to be done in the ICU under an allergist’s supervision.

I don’t have the greatest history with immunotherapy. Remember what I said about living in outlier land? Well, I’m one of those patients who did not tolerate immunotherapy very well. As in repeated systemic reactions, not well.

Ms. Clarity also said I would be getting benadryl intraveneously, as well as low dose steroids for the day before, of, and after chemo. I may have been being a pain, but I felt I needed to point out that I have had reactions that took 3 epinephrine shots to counteract and have had enough steroid suppression to get a rare pneumonia. Yes, I am being paranoid. Perhaps I’m focusing all of the fear on the allergic reaction? Maybe, but its familiar, and I found plenty of literature indicating its high allergenicity.

Weirdly, no one actually looked at the port. I did however ask why I was having so much back and neck pain from it. Enough that I have been taking both prescription M.otrin and V.icodin in order to sleep. The tension is so bad that it actually travels into the back of my head. Thursday night I couldn’t even pick anything up past a certain level without feeling pain. It was really weird.

I was told that this isn’t that unusual. Some people just don’t adjust to having the port as well or as fast as others. It still sucks. Thursday night DH yelled at me to start taking the painkillers in a more consistent manner. Did I mention I am not very good about taking painkillers? You would think I would learn.

So, I have to do a peeing plus blood test for Monday. Yes, I get to collect 24 hours worth of urine to make sure my urine output is ok for chemo. I don’t recall if I mentioned that while I was in the hospital, a few people mentioned I was peeing like a racehorse while emptying the catheter buckets. I understand that they have to check certain levels, but hey.

On Monday, they will also be doing the two gene tests that will let me know if I need to warn my female relatives to be checked. I think Lynch Syndrome is more likely than BRCA 1/2 considering my family’s medical history. Of course, the chance of either is rather low, but I feel it will be better to check and warn than to not check. I mean, due to having had several relatives who had had colon cancer and melanoma, I was already doing preventative care for both. (As were most of my relations on that side of the family.)

So, Monday, I also get all my nifty chemo prescriptions that I fill vs. the ones that they give me on Thursday. Thursday is when the first chemo treatment will be. They said it will probably take about 4 hours. I’m taking my nifty netbook to play games or write. They don’t have a working wireless and most cell phones don’t get any service in their location.

Of course, that we got out of there at 4 PM irritated DH to no end. He was grouchy and grumpy the rest of the evening – except for when I fed him pasta. He’s a good man, but this is getting to him. Of course, without his beard and mustache I feel like I have robbed the cradle!

Doctors’ Visits, Pharmacies, and Insurance Fun

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This past week was one of doctors’ visits. On Monday, there was none, but I was just tired. This may have been because I tried to wean off the pain pills too fast. Yes, I tried to do that again. Did I mention that doctors have yelled at me for this?

Tuesday

Tuesday was a visit with my ob/gyn, Dr. Compassionate. He is the same doctor who did my D&C. Seriously, this man has an amazing bedside manner. You may cry with him, but it is truly with him, not because of him. Dr. Compassionate said my stitches were healing beautifully. As a matter of fact, I am healing a week ahead of schedule. I still have about 3 weeks for the internal stitches to heal. He did take me off of all restrictions that don’t involve internals, though!

Dr. Compassionate asked us about when chemo was starting and getting my port (more later) put in. DH thought he was the gating factor, but, Dr. Compassionate pulled back from that question to make it clear that that was for Dr. Professor and my gyn/oncologist, Dr. Sunshine, to decide. We told him the plan was to start chemo in either the first or second week of June. Before we left, Dr. Compassionate gave me a hug. From what MIL, the nurse, has said, our situation has shaken a lot of the medical personnel who know about it.

Wednesday

Wednesday was the day we met with Dr. Perfectionist, the general surgeon. He is an Iraqi doctor who refuses to speak anything but English – even to his Arabic patients! He also has earned the respect of all of the other physicians and nurses around him. He is the person they all say to go to get your port put in. And, yes, my MIL knows him well and warned him that her daughter (in-law) was coming to see him for a port.

What is a port, you ask? Well, since I have the world’s lousiest veins, the doctors all feel that it would be best to make it easy to access a vein for both getting blood and getting the chemo into me. The port is a device put into the upper chest that accesses a vein for just that purpose. I don’t like to think about it much. I’m scheduled to have it put in on Friday, May 29th.

I have to say, however, his office staff leaves much to be desired. Both were rude and gruff and could not handle the little insurance blip we are dealing with. You see, earlier in the day, my DH had gone to the pharmacy to get my l.ovenex prescription filled. Now, the pharmacy guys were great, but, the insurer sent them a letter on the medical but not the pharmaceutical benefits. As a matter of fact, they gave them the wrong number for the pharmaceutical benefits. The letter they got faxed to them had all of the things a medical practitioner needs for billing. We gave this to the woman and she was like – this is not good enough. Thank goodness my MIL was there!

This woman was also being a pain about interruption of coverage. The date of end of coverage for continuation of care without pre-existing conditions is 63 days in my state. We were well within the time and had no actual interruption in coverage. (Due to my allergies, I am really familiar with this and have gone without things to make sure I have never had my coverage interrupted.)

Thursday

Thursday we met with the gynecological oncologist (gyn/onc), Dr. Sunshine, for our post operative check-up prior to starting. His office, unlike Dr. Perfectionist’s office, were not phased by the insurance insanity that has ensued. The receptionist called and despite having to inform the person on the other end that she had just asked them that question and repeatedly having to explain that she was in another state, was able to get things in order for our visit.

We went over the chemotherapy stuff again, and Dr. Sunshine mentioned something that didn’t register until today – one of the drugs is from the yew plant. I didn’t think anything of it until I went Friday to get paint thinner and saw a yew plant. It’s an evergreen. I am extremely allergic to most trees – including evergreens. I hope the substance does not contain the protein I react to. (I will be calling my allergist to make sure he has been consulted. For that matter, before this started, I was supposed to see him again.)

Funnily, when we asked if Dr. Sunshine had consulted with Dr. Professor yet, he mentioned that when he called Dr. Professor, Dr. Professor told him he needed to know he was at a card game in Las Vegas. There is a legend that Dr. Professor has been banned from various casinos around the country for card counting. No one knows the exact veracity of these rumors. Dr. Professor is smart enough to know how to count cards without being caught, I think.

Now, while Dr. Sunshine is awesome, I’m not so sure about his Nurse Practitioner. She was sent in because I asked about counseling and support groups. Specifically, I do not want to hear about people who are surviving for their kids. DH and I went through why we needed someone who had dealt with infertility. Not 10 minutes later she was talking about young women who had infants and small children. Hello? You are a gynecological oncology nurse. You should be familiar with psychological issues surrounding infertility. I nearly lost it completely when my voice broke and told her, “I would give every minute I have left to have had a child.”

The Nurse Practitioner also kept pushing how the group therapy would be a good thing because I now have a life-threatening disease. See, there is a disconnect for most people here. My fellow anaphylaxis sufferers, which is more predictable and manageable? Anaphylaxis or treatable cancer? I have been living with a life-threatening disease where leaving my house puts me at risk of dying because I don’t control my environment since my late 20s. This cancer is, to my mind, a new, minor change.

Now, I realize that non-allergists and non-anaphylaxis sufferers don’t really get that life-threatening part. The thing that bothers me is that I can’t seem to communicate that walking into an unknown place could lead to my immediate death if they are popping popcorn and I don’t exit fast enough. Cancer looks simple in comparison. Annoying, but simple. Perhaps I am weird in my outlook here, but the first time you come close to dying from something innocuous, you start looking at life completely differently. (Yes, DH has pointed out the worry with reactions to the chemo drugs. Rapid immunotherapy or complete depression of the immune system, anyone?)

After seeing Dr. Sunshine, we went to Dr. Professor’s office because of insurance issues. Insurance did not want to cover my l.ovenox. I have two blood clotting disorders – double heterozygous MTHFR and PAI-1. I’m having a port put in and it is important a clot not occur once it is there. I’m also recovering from a major surgery that endangers me in regards to clotting. L.ovenox is sort of important in these situations.

DH and I knew we chose the right location for chemo when they didn’t even blink and described exactly what was going to need to happen. Of course, I found out that no one had written the giant red letters about popcorn on my chart yet. They were shocked. Yep, I know it is rare. I also loved how they looked at me like are you kidding when I described my various (bad) ER experiences where I have been told you can’t pass out from anaphylaxis. See, your circulatory system stopping tends to cause a loss of consciousness in most people.

I made my post port / pre-chemo appointment with either Dr. Professor or Ms. Clarity. When they asked if I had to see Dr. Professor I said I thought it didn’t matter since Ms. Clarity ran the office. My meaning that she kept care of the things he doesn’t have to be involved in. The checking of a port is pretty straightforward from my understanding unless there is a problem. Good PAs and NPs – especially those in specialties – know when they need to get the doctor involved. They implement with more autonomy than an RN, who in turn, has more autonomy than an LPN, etc. Offices are run by support staff, not doctors. Doctors need bandwidth to keep up to date on treatments, diagnostic changes, surgical procedures and their own professional stuff. I don’t want them doing stuff that can be done by a PA, NP, RN, LPN, NA, etc.!

Friday

Friday was a day I got to sleep in and do a little shopping. I went to get paint thinner as my mom – who is staying to take care of me – wants to paint my front door for us. It does need it and she is better at it than either DH or me! We also went to K.ohls where we both bought some clothes. She did better at the clearance rack than I did. I got tired faster than I expected. That part sucked.

On the medical front? DH got my drug refills and found one of the drugs went from a 30 day supply to a 28 day supply and went from a 40 USD co-pay to a 110 USD co-pay. He has been rather grumpy since. (Can’t say I blame him.) Really, something has to give in regards to this. Thank goodness we have insurance as the drug in question is 4,000 USD for a month’s supply sans insurance. Something has to change in the USA in regards to our medical system.

I meant to blog these each day, but, for some reason, tended to be tired by the end of each day. So, you get to suffer a rather blow-by-blow of the week and its jumble of emotions.

I am also way behind on email and apologize to those who have not yet heard from me. I am getting there!

Asthmatics Sentenced to Death – The HFA Inhaler Debacle

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HFA Inhalers do not work. Asthma and COPD are too dangerous of diseases to mess around with medicines that are known to work, namely, CFC Inhalers.

For those allergic to corn or alcohol, HFA Inhalers can send us into anaphylaxis. CFC Inhalers were safe because there was nothing but albuterol in them.

The HFA Inhalers do not have the ability to reach and clear the lungs. This leaves those with severe asthma needing to use epinephrine – an epi-pen – if they want a chance to make it to the hospital and a nebulizer.

So, are asthmatics and other lung disease sufferers targeted for death by the country’s lawmakers? Intentionally or not, I believe the answer is yes.

Please support The National Campaign to Save CFC Asthma Inhalers ( https://www.savecfcinhalers.org/ ). Congress has endangered millions of Americans with short-sightedness that only benefits big Pharma.

August and September Equal Canning (and Freezing)!

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I have been absent from blogging due to massive amounts of canning.  Of course, I did my traditional (not roasted) ketchup and barbecue sauce – not to mention enough bread & butter pickles to make for Christmas, the parents, and the in-laws.  This year I also made peach preserves, plum preserves, gingered-pear preserves, grape jelly, raspberry jelly, and small batches of blackberry jelly and nectarine preserves.  I will be doing a bit of apple preserving as well – frozen pies, pie filling, apple preserves, and maybe, just maybe, some drying.  (I am thinking of getting a dehydrator.  Any recommendations?)

 IMG_1337 IMG_1334 IMG_1320 IMG_1300

I would be doing more, except, well, you can’t find anything smaller than a quart canning jar for love or money in my area.  I went far afield to find some 4 oz. and 8 oz. canning jars.  I’m put off by paying for shipping for canning jars!  I may put up grape juice and other fruit juice since quart and half gallon jars are currently available. I will admit that I have fallen in love with the 12 oz. quilted jars.  They are perfect for giving pickles as gifts rather than the somewhat too large quart jars (yes, I know some folks can eat a whole quart in a sitting), or the too small 8 oz. jars – plus, they look pretty.

Why do I can so much stuff?

Well, because of my allergies.  Do you know all the things that have corn?  Do you realize that it is impossible to even get commercial pectin without corn (dextrose)?  Yes, I even made my own pectin from apples. 

I use beet sugar to minimize the issues with cross-reactivity with cane sugar and corn.  It is very common to react to cane sugar if you are allergic to either rice or corn to react to corn sugar – or develop it.  Well, I’m allergic to both corn and rice.  Thus far I am not allergic to cane sugar, but I am not going to tempt fate by using it in everything.  I am aware that those with sulfite allergies cannot use beet sugar.  (Beet sugar is high in sulfites due to the way it is processed.)

I can guarantee that there is no cornstarch used in dusting my jars or lids for processing and packaging.  The lids and jars are washed and then sterilized to remove any foreign substances.  So far, out of tons of jars, I have only had 2 fail to seal.  Once my cabinets are in and filled with the goods, I will post a picture of all – or most -of my canned bounty.

It really isn’t that hard to do.  Of course, I grew up canning foods so I may have a few non-standard habits that the USDA would not approve of.  I figure that if my Great Grandmother (a USDA circuit rider in the 1920s) would do it, it would be safe.  All my relatives are canners.  I even heard my aunt can’t keep up with her crop in-take.  My bounty comes from the Farmer’s Market.  All local farmers who rely on repeat customers.  No one is allowed to sell there if they aren’t the actual grower or producer.  I know that there is a problem at other markets with non-growers and non-producers acting as middlemen, not here.

If you want to try canning, I highly recommend the book, Ball Complete Book of Home Preserving: 400 Delicious and Creative Recipes for Today.  I like this even more than the Ball Blue Book because it has so much more information.  I think it is worth every penny I spent on it.  It is already getting very worn.

I’ve run out of room in my freezer!  It is filled out with most of a quarter of a cow, blueberries, a raw ham, and various pork and lamb pieces.  I have recently learned that baked bread tastes fresh if you freeze it immediately after baking.  (I love the The King Arthur Flour 200th Anniversary Cookbook/Dedicated to the Pure Joy of Baking – chock full of useful information like this.)  A good rainy day for baking massive amounts of bread and freeze it up for later use. 

Now, DH is a city boy, through and through – well, he is a lake lover but never seems to make it out onto the lake these days.  This makes him nervous about the preserving tendencies of his wife.  He is upset that I have a freezer that is full and have been making noises about possibly acquiring a second one.  I have a small freezer and would like a second one.

I have managed to do a very small amount of knitting – just work on a pair of socks I started way back in March.  Yes, I am the world’s slowest knitter.  Sorry, no picture yet.

I will be posting the recipes in the following days.  And, yes, I will be returning to book reviews in a bit.  I should just plan on a August into September sabbatical for canning every year.  Really, I should…

Living Without Exposes FAAN’s Duplicity on Corn Allergy? Well, a Little…

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There is an article at Living Without – a pretty good magazine dedicated to those of us living with food restrictions due to immunological issues about corn allergy and FAAN. As some of you are aware, I have major issues with FAAN.

If you suffer from an allergy outside of the Top 8, I suggest you respond to this article – and make whomever you can aware. Munoz and her cohorts are doing more damage than good with their emphasis on the Top 8 allergens. Allergy is a very personal disease, and not much can be generalizable.

This is my letter to Living Without:

FAAN has done more damage than good with their emphasis on the top 8 for anyone suffering from an allergy outside the Top 8. I am anaphylactic to popcorn – and possibly corn oil. The allergy is IgE mediated – not an intolerance.

Before FAAN, it was possible to get companies to work with you if you had an allergy to something outside of the top 8. Today, you will get a pat answer that “corn is not an allergen according to FAAN and the FDA,” from companies. Oh, and if you contact FAAN they will say it is the FDA, contact the FDA, and they say they get their information from FAAN. Also, it would be wise to trace the money that supports FAAN – one of their major corporate sponsors is KRAFT, which is known to put corn in absolutely everything.

The lack of transparency caused by FAAN’s insistence on only focusing on the Top 8 is not exclusive to corn allergy. I have seen it come up with rice (common among Asians), lettuce, and a number of other less common allergens. Again, companies that used to be cooperative quote FAAN guidelines as if they were gospel. They simply are not!

I was also a participant in the very, very flawed study out of Tulane. The placebos used (peaches) are known to have the highest cross-reactivity with corn according to European researchers. I am also allergic to lentils and should have been excluded from the study due to my already diagnosed issues. Despite becoming progressively more ill from the tests – including throwing up on the first challenge – they allowed me to continue until I spent an entire night very, very sick with food poisoning like symptoms. I was told I did not react. I suggest they read the PDR (Physician’s Desk Reference) to learn about allergic reactions.

The Tulane study was underwritten by corn growers and manufacturers. It is nice that they are saying it exists but is rare – but I am running into more and more people who are getting diagnosed with corn allergy in real life – not just in the online community.

Munoz has betrayed everyone who does not fit her definition of what allergy is. The Europeans – because they do not rely on corporate sponsorship – are much further ahead in studying, treating, and recognizing every immunological disease, including allergy. They and the Canadians have long recognized that maize is in the top 12 allergens world- wide.

So, what do you think the real reason largest growing lobby’s main crop not being recognized as a major allergen is? Watch the Farm Bill debate and tell me that there isn’t a lot of money in making sure that corn is never recognized as an allergen within the USA.

I am tired of this fight. But, unlike some other fights I pursue, I don’t have a choice whether to fight it or not. Hidden corn is everywhere. food manufacturing practices allow for its uses without any type of labeling whatsoever. They can inject meats with corn syrup and dextrose (in the USA this is always corn-based) without any labeling because the injection is considered part of the manufacturing process. Same with a corn-based citric acid wash.

As to those who holler “no proteins left”! After the pet food disaster, do you really trust manufacturers? I sure don’t.

The scariest part? Even unprocessed organic and “natural” foods can be “minimally” processed with corn-based substances.

I rely on the farmer’s market, Whole Foods, Kroger’s Organic, and Trader Joe’s for most of my shopping. Even with those trusted companies, I have, on occasion gotten very ill from accidental exposure.

I don’t even want to go into the issues around medication! No ingredients have to be labeled and almost all medications have corn-derived fillers.

But, the Farm Subsidies to one of the most soil-damaging crops around (seed corn – not sweet corn) keeps increasing each and every time a new Farm Bill is passed. Monsanto and ADM are mighty powerful companies with politicians in their back pocket.

Staying Positive When All Is Negative

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Everyone who deals with a chronic illness, infertility or any traumatic event, deals with the problem of getting worn down from the constant stress of it all.  Some things are in our control, some things are not.  Sometimes the things we think we can control are really outside of our control.

This gets further complicated when dealing with support communities – whether online or in real life.  People, being people, sometimes get hurt by the oddest things.  No one meant to be hurtful or mean, but it happens. Lord knows, I have hurt people unintentionally.  Probably, I have hurt more people than I thought I have. Once you take on the task of supporting others – tacitly or not – you end up creating new stresses for your yourself.  Language selection can actually cause all kinds of problems.

Some communities do not like the words outsiders use to describe them while others embrace those words.  Many words that should not be emotionally charged are due to cultural considerations.  In the USA, words like retarded have accumulated a morass of meaning that have nothing to do with what the word originally meant. Any group has to decide how to define itself with or without the emotionally charged words that society has already assigned it.  This is not so easy.

No matter what choices are made, someone is going to take objection.

Mel, over at Stirrup Queens, for instance, has an abbreviation list for those who are dealing with infertility, child loss,  adoption, and parenting after infertility.  She chose to use the term TTC – a standard from the old Usenet News days that is widely used on bulletin boards – to describe the beginning journey.  Many people started to object as this did not include those who had conceived but never given birth, those who lost an infant, and those who skipped medical interventions for adoption.  Now, there is a discussion about what would be the right abbreviation.  Poor Mel is feeling bad about this and actually changed her blog entry to TTP – Trying To Parent – rather than TTC (Trying To Conceive).  She also felt bad for making a simple mistake – saying every IVF cycle leads to conception.  That is not true, many, many are canceled/fail before that point.

So, what is Mel doing?  She is trying to come up with the perfect term.  The thing is, the variety of human experience surrounding just this one trauma is so diverse that there is no perfect term.  There are a variety of terms that are needed to communicate.  It is a veritable language of its own.  But, even these small disagreements tend to cement the community as a community.  Even bringing up how we can each best support the other in their unique circumstances.

“I got corned,” is a refrain we hear on the Avoiding Corn list quite often.  It seems as if society is out to kill us.  Literally.  Items that used to be safe suddenly have hidden corn ingredients.  If someone who has a corn allergy sees the word sorbitol, he or she knows to run, not walk the other way.  It does not help that some physicians do not even believe in a corn allergy.  (I have the paperwork from testing plus ER visits to prove my corn allergy.)

Of course, moods are not lightened in the corn allergy community when we hear of new and unique uses of corn.  But, then we remember that because we have to watch everything we eat and come into contact with, in some ways, we are healthier despite ourselves and our allergy.  Unfortunately, often, the information of what is causing our issues comes too late to avoid severe damage to our bodies.  Allergies, left untreated, can cause all kinds of health problems.

Then there are those in the “disabled community” that have added challenges of living an alternative lifestyle.  One such blogger is Liz at BadgerBag.  She has opened her life up to those of us on the Internet to share her trials and her triumphs – and like all of us, her prideful folly.  It sometimes feels a bit voyeuristic to read her most excellent blog, but it shows what determination to be true to one’s self can mean.

Recently, a knitting blogger, Becka, at The Knitting Wounded found out that she has breast cancer.  At first she was going to pack it in and crawl into a corner.  Then she decided to keep on knitting and blogging as a distraction.  Her posts may not be as frequent – or may be more frequent – but she is going to do what she has to do.

Now, this post may come across as rather negative to some of you, but that is not the intent.  It is to show that no matter how negative the circumstance people persevere, somehow, some way, until they can’t anymore.

I think that is something positive.  And I think that if people have the strength to argue  over terminology; whether or not something is or is not a real concern; or, what the appropriate behavior is to be, then maybe, just maybe, something positive is going on after all from that seeming slight or surrender.