Category Archives: Anaphylaxis

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.

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.

Why Fear Is Sometimes a Good Thing – And Allergy is an Individualized Disease, Not One-Size Fits All

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I am seeing a disturbing trend from several popular online allergy bloggers. Many of them are starting a “do not live in fear” motto when it isn’t really about living in fear, it is about living rationally. It is not rational to put your life in imminent danger when you know how to avoid the danger.

Let me repeat that in bold:

It is not rational to put your life in imminent danger when you know how to avoid the danger.

Many will say I am alarmist. I do not believe I am – and many would agree with me. It is irresponsible to ignore limitations.

If you have a severe food allergy and continue to expose yourself willingly and knowingly to your allergen you are guilty of playing Russian Roulette. Is this responsible behavior?

Now, that being said, there are some allergens which are very easy to avoid. Some of those are the Top 8 allergens that FAAN recognizes. (I have a tirade about the effects of the Top 8 focus on another blog.) However, even here, there are problems in that FAAN refuses to recognize that a significant portion of individuals react to soy-based lecithin despite their claims otherwise. (They, like so many others, have basically been bought out by industry – perhaps unknowingly. I will come back to this problem.) Some are not major components of the food supply, but because they are not required to be labeled, there is a real danger of inadvertent exposure.

There is one allergen that is growing in the USA that the powers that be continue to deny is allergenic. Corn. Corn allergy is real. Corn allergy is hellish. Would you like to know why? Go read the King Corn Challenge blog entry where he interviewed a mother of a corn allergic child. There is no “safe zone” outside of one’s own home. And, if you are one of the unlucky few (like me), who can react to aerosolized proteins, well, no, you can’t just sit and socialize while others eat your allergens. There is a very real possibility of ending up in the hospital.

Some are going to say that you can just ask the chef to prepare something special for you. This is very difficult in the United States – much more possible in Canada. I have traveled in both countries and can tell you I have had reactions almost every time I have trusted an American chef, but not a Canadian chef. (There is one exception with a chef in Harrisville, Michigan.) Why is that? Well, because the chef will not have contacted the processing plant where the food is likely to have been washed with citric acid. Citric acid is almost always corn-derived. Or, with meats, to keep them moist, the Codex Alimentarius allows for the injection of corn syrup or dextrose without any labeling.

This is not the fault of the chef. This is the fault of the large, entrenched food manufacturing interests. If the chef is a locavore using a local processor who he knows is using only a water wash, you will be able to trust him, but then he might use table salt.

Table salt? Table salt is stabilized with corn. If you have a corn allergy you need to use non-iodized sea salt or kosher salt. The only safe iodized products would be those that get their iodine from kelp or other seafood.

Does this mean you have to stop living if you have a corn allergy? Of course not! It means you will have to adapt your behavior in order to avoid a hospital visit where there is a high likelihood they will do more damage than good.

What the hospital isn’t safe? Nope. You see, most people, including pharmacists, have no idea where those drugs come from, and trust me, do not believe in “denatured” with current manufacturing processes. Some places that corn could be hiding in a medical institution:

  • binders in pills,
  • dextrose in injectible medications,
  • dextrose IVs (the first thing they want to connect you to – demand Saline Only IVs),
  • Alcohol Pads,
  • Cleaning Supplies,
  • Cornstarch on surgical gloves (you can ask for dust-free gloves to be used, well if you are conscious),
  • medical adhesives.

Oh, and the list can go on, but I just wanted to give a smattering of an idea to people who think that those who choose to avoid dangerous situations are being neurotic.

Well, let’s say that you want to call the manufacturer and find out if something is corn-free. This is not as straightforward as it once was largely due to FAAN‘s Top 8 Allergen campaign. Many manufacturers now hide behind this campaign and refuse to even answer questions. Those that do answer, may not have the correct information. Here is an semi-fictionalized example (names have been changed because, well, all of them are guilty.)

Customer: Hi, I need to know whether your cupcake liners are corn-free.

Representative: Yes. Our cupcake liners are corn-free. Why wouldn’t they be?

Customer: Do you know whether they use either a corn-based paper or wax?

Representative: No, they are plain paper. – This is not a real answer since paper is one of the products that is made from corn.

Customer: Are your lines dusted with cornstarch?

Representative: I don’t know. I would have to contact the line manager.

Customer: Can you have the line manager contact me? I can be reached at 1 555 555 5555.

Representative: Ok. I’ll have him call you back.

Later:

Customer: Hello

Line Manager: I understand you need to know about cornstarch? We dust the lines to clean them with cornstarch. But, you’ll be happy to know our product is corn-free.

Customer: Uh… Thank-you for calling me back. If you are using cornstarch, how is your product corn-free?

Line Manager: The product does not contain any corn.

Customer: Thank-you.

This is a fictionalized account of a real conversation. Is it any wonder the corn-allergic are a wee bit paranoid?

Of course, occasionally they will say something to the effect that they work closely with FAAN to make sure their product is allergy free and just send you a form letter about the Top 8 Allergens. They will then inform you that you should talk to the FDA who will inform you you need to talk to FAAN. FAAN will then tell you to talk to the FDA.

The National Corn Grower’s Association is very proud of its work in promoting new uses for corn. Go read their PDF.

As to always carrying an epi-pen, I do. The thing is, despite taking epinephrine, people can still die from a reaction. It is not a cure.

Corn Allergy – Even School Assignments Threaten?

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On the Avoiding Corn on Delphi Forums, amaxcat, one of our really great contributors, posted the following url:

http://www.ncga.com/education/unit9/u9story.html

It is the National Corn Growers Association school lesson suggestion to show just how corn permeates everything.

It takes us through a story showing the character, David, baking cupcakes for a contest and his cousins. The idea is for students to use the PDF that is included to identify all of the corny ingredients.

Well, the PDF shows that not only the ingredients, but the paper liners, and even the plastics could be corn-derived. Coatings on paper can be corn – and paper itself can be corn. (Personally, I have even run into maize yarn. Thank goodness my local yarn store knows of my allergy!)

This little exercise is one of the best examples showing that corn is in everything.

What concerns me most is the call for a Corn Cooking Club?!?! There are children out there that can die from even slight exposure from corn. And, despite efforts to deny it, more and more people are getting correctly diagnosed with a corn allergy. Can you be more irresponsible?

Corn is not hypoallergenic.

Nothing is hypoallergenic. You can be allergic to anything that has a protein. (It is a chemical reaction if you are not reacting to a protein, but those reactions can be just as deadly.)

Here is the thing that makes me craziest with lay people and non-allergy medical professionals both:

The refusal to understand that allergy is a very individualized disease. No two people are going to have the exact same list of allergens. Just because I am allergic to one substance do not wish other allergies upon me!

Social Isolation, Chronic Illness, and Invisible Handicaps – Food Allergy

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There are some illnesses that create more of a sense of isolation than others. Our society does not deal with disease well. Now, we have gotten better – but we still make assumptions. I suffer from one “hidden” disease I am very open about – severe allergy – and another chronic illness that I don’t share openly because, frankly, it is a private matter. (And those who don’t know what it is, can just keep guessing.) I also have friends who suffer incredible hardships because their handicaps are hidden, some of the type we don’t talk about in mixed company.

Now, why am I so hesitant to share information about one disease when I am so open about another? The biggest reason is that I must share information about my allergies if I don’t want to inadvertently die. Yep, die. I am not being melodramatic; wish I were. The other disease, though incredibly painful, is something I do not have to share with anyone but my closest family and friends – and some in the blogosphere.

Why am I blogging about this today? Well, one reason is that this week is Food Allergy Awareness Week or some such. Now, I am not a big fan of FAAN, but they do a lot of good things for a large portion of Food Allergy Sufferers. They just neglect those of us with inconvenient allergies. Most of us who have been around a long time saw this come about with them finding corporate funding, but that is another rant. One thing they did do right was sponsor a study on Social Isolation in Food Allergic Children. This, can, of course, be extrapolated to adults. A socially isolated child tends to become a socially isolated adult.

Why are food allergic patients so socially isolated? Food is the central point of much of our culture. And this is not limited to family functions. How many business deals are done over lunch? Do you think it doesn’t hurt someone’s career wouldn’t be hurt if they can’t effectively network because the presence of a given food can cause a reaction? What about the great numbers of people who will not be inconvenienced for another person’s needs?

I can’t go anywhere where there is popcorn. I have to inform all of my co-workers that I can’t be around popcorn. Think about this. The most common snack food around is microwave popcorn – which can be a triple whammy since I’m allergic to soy and milk as well.

The first question I get asked: “What’s in popcorn that you are allergic to?”

My answer: “Popcorn.”

Then the person starts listing all the places that have popcorn. Most people forget gas stations. Think about this, if there isn’t a “Pay Outside” option, I can’t use the gas station to fill up. I can’t go into a Target, some KMarts, etc. Oh, and thank goodness for DVDs. I can’t even go near a movie theatre.

I’m not the only one.

Honestly, personally, I lost a lot of friends – who obviously weren’t real friends – when I was diagnosed with food allergies that precluded me from going out to eat. It is pretty hard to go out to eat when you are allergic to the triumvirate of the North American Diet: Corn, Soy, and Milk. And Italian is out with Olives and Olive Oil being allergens. Oriental foods? Rice is an allergen. How about a movie? Popcorn. But, there are other things that I can do. We can rent a movie and have food in – I’ll host. We can go to a museum. We can see a play, sometimes. Or a concert, sometimes. (There may or may not be popcorn at either.) It did help me find real friends who value me as a person rather seeing only what I cannot do. Some are brave enough to take the cooking challenge, some are not. A running joke is to try and get the Iron Chef or Iron Chef America (especially Alton Brown) folks to try to cook a meal for me – with me scrutinizing every food.

If you are new to food allergies, Alton Brown is an invaluable resource for the science of food. I want his entire video library and keep meaning to get it as a gift from my dear husband.

I was an adult when I had to deal with this – and it nearly knocked me down. I was lucky enough to find a wonderful community of folks, Stilyagi and Pinatariders, among them – not to mention the knitting communities, allergy communities, etc. in real life. I also had several online support groups I could turn to. Of course, some of them I fell away from due to a variety of reasons, but there are some core groups that have always been there. I can’t imagine how much harder it would have been when I was a teenager? I shudder to think.

There is nothing about me that would indicate that I have a handicap that prevents me from breathing – a major life function – without accommodation. Food Allergy is not the only disease like this. What about the person with severe breathing problems that are “under control” as long as they don’t exert themselves? Or the person with a cardiac problem that precludes exertion? Asthma?

Next time someone with a handicapped sticker who looks whole and hearty parks in a handicapped spot, do not assume that you can see their handicap.

Oh, and let’s not forget sexual issues that are handicaps. We don’t talk about Women’s Health at all in this country, and I will discuss that in my next post.

Really? ER Doc’s Don’t Know Anaphylaxis? What a Surprise!

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This just makes me madder and madder:

How Common Are Severe Food Allergies?

Let me start by telling you a story:

Between Christmas and New Year’s I had an infection (which will remain nameless) for which I was taking a cream (also remaining nameless). I had noticed a little light-headedness when applying the cream in the past, but, thought it was related to the pain.

My husband had just taken the dog for a looong walk when I noticed it was time to reapply the cream. I went to the upstairs bathroom where I kept the medication and applied it. I felt very dizzy and sat down putting my head between my legs…

I woke up staring at the toilet paper holder being confused by the sound of running water. “Is the toilet on the fritz? Wait… that doesn’t make sense.” I thought when I noticed the water all around the bathroom floor. I don’t know how long it was before I noticed the toilet tank had been shattered.

I started screaming for help. No one came. I wasn’t really able to move, at first. I calmed down enough to crawl around to the valve to shut off most of the stream of water.

I had been expecting a phone call so had my cell phone on the vanity – but I couldn’t reach it.

I thought I heard my husband and dog return. I screamed again. Ran out of breath. Screamed again. My husband came upstairs to find me trying to lift a peroxide bottle that must have spilled when I fell. To him, it appeared I was pouring peroxide out.

I don’t know how long it took, but he helped me get up to go to our bed. On the way I threw up. I knew then that I was having a severe allergic reaction. I also just wanted to go to sleep. My husband panicked. (He claims otherwise, but who wouldn’t?)

He couldn’t decide whether to call an ambulance or his mom. His mom is an R.N. with over 35 years of experience. She might have an idea of what to do. Just as he was struggling with this, she called. We had left some stuff at her place on Christmas and she was going to stop by to drop it off if it was ok.

Husband, of course, starts telling her what is happening and she instructs him to call an ambulance. Mother-in-Law (MIL) gets there almost immediately. Husband had helped me change out of cold wet jeans into big sweats. MIL just happened to have gotten her new nurse’s bag and takes my blood pressure: 50/70 and falling.

According to MIL I was glassy eyed, looked like I was in diabetic shock – but, a little later we find out my blood sugar was perfect. I thought I was telling them it was an allergy but they tell me that I was non-communicative.

The ambulance arrives. Six, big, burly guys, and 4 short little girls come into our bedroom and start trying to give me an IV. (I have “baby veins” and with FALLING blood pressure, there was nary a vein to be found.) I am screaming everytime they poke me with the needle as, well, my skin was flush and hypersensitive.

They read the medic alert that stated plainly I carried epinephrine with me. They promptly ignored it.

They asked my husband if I was ok to move. My husband, not a medical professional.

They finally get me on the gurney – after finally giving up on giving me an IV – to begin bumping me around. I throw up again. Of course, it probably didn’t help matters that it was the four short women who were carrying me.

I tell them I need to throw up BEFORE we get to the stairs and they ignore me. I, thinking their incompetent, sit up on the way down and throw up. They yell at me to lie back down. At some point during this I start claiming the untruth that I can walk by myself. (I was feeling like a bumper car.)

Finally, they get me into the ambulance where they do the blood sugar test and find my blood sugar is just fine. I know I was asking for epinephrine. Well, I thought I was.

My husband tells me that the ambulance driver (Star Ambulance) asked him how to get to the hospital. We are a straight shot to the hospital and if you know our area at all, you will know this.

I threw up again on the way there.

I get to the ER and am alone with a nurse trainee for a very short time before my husband is with me – or was that after – but before long my MIL was there. Thank goodness she was a surgical nurse in her time.

At some point they gave me oxygen. Honestly, I don’t really remember this. I just remember at some point it was irritating my ear and I wanted it out from the back of my ear. But noticing that came later. I think I was on oxygen at this point.

The young ER physician at Pontiac Osteopathic came up and started going prattling on about nonsense as far as I was concerned. I kept telling him it was an allergic reaction. He actually said the following:

“Syncope is not an allergic reaction.”

Um… ok, yeah, blood pressure dropping suddenly wouldn’t cause loss of consciousness or anything like that.

He kept prattling on about there was no swelling or hives. At some point I suggested he read past the first 3 symptoms of anaphylaxis. I have no idea how long this lasted. But I know I was left unattended without epinephrine for a very long time.

He came back with the nurse on duty who also said she had never seen such a thing in her 20 some odd years. I said the same thing to her, sighed and said “Fine, atypical anaphylaxis I never swell.” I told them to call my allergist. He is on the Medic Alert, and I know he answers calls if his patients are in the ER. He’s an older doctor with an actual work ethic, you know?

To those of you who are unfamiliar with the joys of the orphan disease known as anaphylaxis, it is any systemic allergic reaction. The dangers are if it is affecting the respiratory system or the cardiovascular system. You don’t have to swell or have hives.

The ER doc then decided to try and give me an IV. IDIOT. Blood Pressure Dropping? Baby Veins? The poor nurse – not the same as before – kept trying to find a vein – my MIL even helped him look. I was beginning to feel better, so I was helping. (You can spontaneously recover, but if untreated, a relapse can be more severe.) Finally, my MIL asked me what my allergist did when I had reactions.

My allergist, I love my allergist, he does what you are supposed to do. Intramuscular injection of epinephrine followed by Benadryl + H2 Inhibitor and a course of Medrol. This is the recommendation of the AAAI. Of course, study after study has shown ERs have very poor compliance with this.

This incident started at about 3:30 or 4:00 PM. I did not receive proper treatment (epinephrine) until 6:00 / 6:30 PM. This put me at risk for a biphasic anaphylactic reaction. If you have a secondary reaction it is most often worse then the first. The first had me unconscious immediately. I don’t want to think what else could have happened.

Oh, they also gave me an alternate treatment for the infection.

I then proceeded to try to get in with a doctor. I called my GP first, he was on vacation so I talked to his nurse. She was appalled by the actions of the ER. His partner didn’t want to see me, so I called a specialist I am seeing about another matter related to the infection. He pretty much confirmed it sounded like a severe allergic reaction.

I called my allergist, but his offices were closed – he is close to retirement. I dread that day. At this point I didn’t consider it an emergency. I was just getting ready for a surgery for another matter and was worried about cross reactivity.

So, I called the next week to get into my GP and he was also appalled by this. It was obvious to him what had happened. He was not pleased that the ER had not tried to contact him. And, like me, and all of the other doctors, kind of told my husband he should have given me epinephrine. Because of my medical history, just assume I’m in reaction if presenting like that. He had us go see my allergist.

My allergist didn’t feel there was any need for additional testing since the course of events went applied cream –> unconscious -> came to. He thinks the thing that saved me was that I take an antihistamine each and every day without fail. He was unsurprised by the ER. I get the feeling allergists on the whole are not well-pleased with ER treatment of their patients.

Of course, everyone is obsessing on how the toilet tank got shattered in the fall but I was unmarked. The thought was head injury by my husband, he keeps going on about afraid of me jerking and hurting myself more. (Epinephrine needle goes in the thigh, mostly like a bee sting.)

“While many people think that anaphylaxis requires that the victim is in shock, this just isn’t so, he says. “A person doesn’t have to have falling blood pressure or be in shock before a diagnosis is made. Any multisystem allergic reaction with symptoms such as shortness of breath, rash, or vomiting is anaphylaxis.” Dr. Carlos Camargo, MD (from WebMD article linked to at top of post).

Um… shock? HELLO!??!! Think maybe there is even more education needed than Harvard Allergist Dr. Camargo suspects?

Every allergic person I know has had a similar experience. Every one of us lives in fear of being killed due to the inaction of improperly trained medical personnel. Allergies seem to be growing in the population.  It is vital ER physicians learn about the presentation of severe allergic reactions.

Series of Unlucky Events

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Last night I went to Whole Foods to pick up some groceries. Unfortunately, as soon as the cashier started ringing up my order another cashier headed towards us. I ran out leaving behind everything – including my purse – and saying “I can’t stay, I’m allergic to popcorn.”

So there I stood in the cold as the cashier came out with my purse. She rang up the order; I paid with my credit card, and the cashier brought my bags out to me.

Whole Foods was a “safe” place in my mind. No longer. <sigh> It is very difficult to avoid popcorn.

For those who don’t know, popcorn can kill me from simply being aerosolized. I breathe it in and my blood pressure drops, flush, etc. Unfortunately, the majority of Emergency Rooms cannot recognize anaphylaxis if it does not include outward swelling or hives.

If your circulatory system stops, you die. The only known treatment is to receive intramuscular epinephrine in time and a course of H1 and H2 inhibitors with prednisone for about a week to prevent a secondary reaction.  And this does not work in 100% of the cases.

Only option left is to avoid it, or stop breathing when I think I sense it around me.