Tag Archives: anaphylaxis

There’s Peanuts In That?

I have had a difficult time focusing on writing my blog posts.  I am not sure what is going on other than I am still grieving.  I have been watching many episodes of Diners, Drive-Ins, and Dives with my husband.  Despite all my food allergies, I still enjoy watching the cooking shows.  I keep thinking I might see something that looks so delicious I might want to spend hours in the kitchen trying to rework it to make it safe for me.  It doesn’t happen too often.  Quite frankly I get frustrated too easily.  And summertime does not exactly conjure up a longing to spend hours in the kitchen slaving over a steaming pot on the stove or in front of a hot oven.

A few nights ago Guy Fieri was at a restaurant where the chef was making Mole.  I have never had it.  In my non-food-allergic world I might give it a try.  Then the chef began tossing ingredients into the pan.  The first ingredient was peanuts (a definite no for me).  Then she added mushrooms (another no especially with my fungal infection).  This was followed with plaintains (anaphylactic to those) and avocado leaves (very allergic to avocados and I am sure the leaves wouldn’t be any safer than the avocados themselves).  I think there was alcohol in there as well.

So where am I going with all this?  Imagine you have a peanut allergy.  You go to a restaurant and by a dinner that has sauce.  Because peanuts are not mentioned anywhere in the description, you think you are safe.  Then WHAM, your throat swells shut!  We have to be so very careful!  Food allergens can be hidden in everything!

When was the last time you ate something you thought “was safe” and found out the hard way it wasn’t?

Catch Up Mondays: Why did my face feel like it was being pulled apart? – revisited

This was originally posted on June 13, 2012.  Surprisingly when I have looked at the search engine terms that have led others to my blog, this has been a question posed more than once.  I guess I am not the only one who has felt like this.  — A side note is that at the end I talked about my cover photos – – the cover is done and everything has been submitted.  Hooray!

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Peanut Allergy

I have been reading quite a bit about children dying from food allergies.  Today I read something on the Huffington Post about a rocker going into anaphylaxis from eating a single blue m & m.  Rocker, Liam Gallagher, at age 40 reacted violently to eating a blue m & m that had a peanut in it.  His mouth began to swell and his throat began to tighten.   He developed anaphylaxis and was seen by a doctor who told  him he had a peanut allergy.  He now carries something with him (most likely an epi-pen).

This is just a reminder to all of us that we can develop an allergy to peanuts or any other food at any age.  Out of the blue our body can decide that it isn’t going to tolerate any more of a protein in a certain food.  It is also a reminder to take food allergies and intolerances seriously.

Fragrance Sensitivity Awareness

I am giving you this link to a Fragrance Sensitivity Awareness Slideshow courtesy of my friend Miche at the-labyrinth.

Thank you Miche for sharing this information.

College Food Allergy Initiative

Recently I did a post on food allergies being considered a disability .  I just began following gratefulfoodie.  I was intrigued and inspired by her post on college life and food allergy initiatives.  I know many of you have food allergies and some have life threatening food allergies as well.  And again, some are dealing with college life and food allergies.   I think you will like reading this post.

Epinephrine injectable devices

I carry an epi-pen.  It is a last resort kind of thing for me.  I also carry a vial of histamine (with my correct dose) and allergy syringes.  The histamine works great for my and most of my reactions and doesn’t cause all the side effects of epinephrine like my heart racing.

There was a time when that was my only option for a reaction (my pre-Environmental Health Center-Dallas days).  Believe me, I used it many times.  I used it during reactions from Amphotericin-B I was taking nebulized and I used it when I ate oatmeal and had my throat swell.

While I am glad that I have it should my histamine not be enough to control a severe reaction, it is bulky and the box it comes in with the prescription number on it is even bulkier.  I find myself throwing away the box and then can’t remember when I ordered it or what the prescription number is.  It doesn’t fit into a pocket or small compact purse either.

There was an article in the New York Times on February 1, 2013 (thank you Jennie) about an updated version of an epi-pen.  Twin brothers Eric and Edward Evans grew up with serious food allergies and had to contend with this bulky epi-pen.  The brothers developed a much slimmer version of an epinephrine pen about the size of a smartphone.  I was intrigued at the compact size of this new device.  I wonder if it would fit into a small handbag or a pocket?  I plan on asking whichever doctor I see next about it.  What are your thoughts?  How many of you carry an epi-pen now?  How many of you would like to try this new Auvi-Q?

 

List of my allergies/sensitivities

Awhile back in a post titled, Identification Please, I talked about my medic alert bracelet and what my inscription says. This is a list of what medic alert has on file for me “in case of an emergency”.  A few months back, my doctor’s PA asked if a certain medication was okay for me.  I couldn’t remember if it had been a problem before because my list is long.  Years ago, when I was constantly being given something for all my maladies, I knew all that I was allergic/sensitive to without blinking my eyes.  Time has passed and the list is less easily remembered.  So, I just had him call medic alert and they immediately faxed him  this list.

MEDICATIONS (CANNOT USE PLASTIC CATHETER NEEDLES)

Allegra

Armour Thyroid

Augmentin

Amphotericin B

Ampicillin

Atavan

Avelox

Azactam

Benadryl (all antihistamines)

Benzalkonium Chloride

Biaxin

Chloramphenical

Cipro

Citanest

Clindamycin

Cytomel

Dextrose (corn allergy)

Diflucan

Erythromycin

Flagyl

Fortaz

Gentamycin

Ibuprofen

Isopropyl Alcohol

Keflex

Lamisil

Levaquin

Levoxyl

Lortab

Naproxen

Nizoral

Penicillin

Primaxin (this caused the episode that almost killed me)

Remeron

Rocefin

Sporanox

Sulfites & Sulfa

Synthroid (lost due to an overdose – the pharmacy gave me the wrong dose and I took it for over a week – over time, I have been able to take this again)

Tequin

Thyrolar

Vfend

Valium

Vancomycin

Zephiran

Zithromax

Zyvox

Lidocaine

Versed

Fentanyl

Gapabentin (Comp only) – can’t even take that any more

Nature-throid

Estradiol (Compounded only)

Progesterone (Comp only)

Acetaminophen

Nature-throid

CHEMICALS

Benzalkonium

Chloride

Chlorine

Cigarette Smoke

Ethanol

Formaldehyde

Glycerine

Ladies/Men’s Cologne

Orris Root

Phenol (Plastics, etc)

Unleaded Gas/Diesel

Fireplace Smoke

Zephiran (benzalkonium name brand)

Methylmercaptan (in rubber & gas)

Latex

FOODS NOT ALLERGIC TO – After looking at this list and then the  list of foods I was allergic to in the beginning you can see what I gave up and how hard it was to eat.  It took about two to three months on the provocation/neutralization treatments to slowly get some foods back as long as I took the shots every four days.  Slowly with this treatment and then later LDA, I gained foods that I never thought I would eat again.

Rabbit

Dove

Acorn Squash

Venison

Elk

Quail

Buffalo

Orange Roughy

Crab (sulfite free)

Milk

Canola Oil

Safflower Oil

Sea Salt

FOODS ALLERGIC TO – after taking injections from the Environmental Health Center and now my LDA treatments – I have gained many foods back.  I was so sick and my body was fighting so hard that it literally thought everything was the enemy.  I lived in a hyper-reactive state for so long.  My body still lives in this state but it reacts less violently to some things than in the beginning. Foods that I can now eat  as long as I don’t abuse them or foods that I can eat after the two weeks following my LDA are  shown in red below.  

Allspice (ANAPHYLACTIC)

Almonds

Amaranth

Apples – organic only

Asparagus

Aspartame

Baker’s Yeast

Banana (ANAPHYLACTIC)

Beef

Beets/Beet Sugar

Black Beans

Blackberries

Black Eyed Peas

Blueberries

Brewer’s Yeast

Broccoli

Brussel Sprouts

Buckwheat

Cabbage

Carob

Carrot

Cashew

Catfish

Celery

Cheese (molds)

Cherries

Chicken

Chocolate (can have mold)

Clove

Coconut (no sulfites)

Concentrated Juices (mold)

CORN (ANAPHYLACTIC) – this was an amazing recovery.

Cumin

Dates

Egg

Eggplant

Flaxseed

Garbanzo Bean

Ginger

Grapefruit

Green Bean

Green Bell Pepper

Green Peas

Kamut

Kiwi

Kidney Bean

Lemon

Lentils

Lettuce

Lotus Flour

Maple Sugar/Syrup

Melon (all)

Millet

Milo Flour

Molasses
Navy Bean

Nectarine

Nutmeg

Oat – steel-cut only

Ocean Perch

Onion

Orange

Oregano

Peach

Peanut

Pear

Pecan

Pineapple

Pinto Bean

Pistachio

Plum

Potato

Pumpkin

Pumpernickel

Quinoa

Red Snapper

Rice

Salmon

Sesame Seed

Shrimp

Sole

Soy

Spaghetti Squash

Spelt

Spinach

Strawberries

Sugar (cane)

Sunflower

Sweet Potato

Swiss Chard

Tangerine

Tangelo

Tapioca

Tea (Black – mold)

Tea (Green)

Teff

Tomato

Tuna

Turkey

Walnut

Wheat

Yam

Yellow Squash

Zucchini

Lamb

Olive/Olive Oil

Cranberry

Grape/Grapeseed Oil Cod

ENVIRONMENTAL ALLERGIES/SENSITIVITIES

Pollens

All Molds

All Chemicals

Dust

Dust Mites

Fabrics (Cotton, etc)

Liebster Award

I was excited to see Friday that I had received the Liebster award from Rachel at doilooksick.

To accept this award, here are the rules:
• 1. You must thank the person who gave you this award – check
• 2. You must display the Liebster heart on your blog – check
• 3. You should nominate 7 other blogs – check
• 4. Each person must post 11 things about themselves – check
• 5. Answer the questions given to you by the blogger who nominated you – check
• 6. Create 11 questions for those you nominate to answer – check
• 7. Notify your nominees and provide a link back to your post. – check

doilooksick authored by Rachel is a wonderful site that I have been following for the last five months.   Her mission is to educate others on invisible illnesses.  Rachel has also added a wonderful series entitled Chronic Travel Bug.  doilooksick also just celebrated its first birthday.  I am happy to say that I have been following nearly half of its first year.

The blogs I am nominating are: 

  • The Labyrinth – Miche is educating others on her ordeal with mold and chemical sensitivities while trying to attend college.  I can’t seem to get my comment to post.  Miche – I hope you see this.
  • Living With Fibro – Calvin tells the story of a young man suffering from fibromyalgia.  Calvin has recently published a book of poetry and started The Gluten Free Chef where he bakes and sells gluten-free products.
  • Celiac and Allergy Adventures – Amanda talks about living with Celiac Disease as well as other allergies.
  • Jen’s Thoughts – As the author of a soon to be published book, I appreciate Jen’s blog topics on strategies for writers and reviews.
  • Dysautonomiac – Lindsay shares  information into her life living with dysautonomia (POTS).
  • akrummenacker – Allan also lives with fibromyalgia.  Despite the fatigue and pain that comes with fibromyalgia, Allan just had his first book published.  It is on my list of books to read very soon.
  • Mastcellactivation – Anaphylaxing discusses what life is like constantly battling anaphylaxis.  As a person who has had her share of anaphylaxis episodes, I can sympathize with her.

And now 11 things about myself (wow that is a lot of things to come up with).

  1. I love to read and am finding that I am enjoying my new Kindle more than I ever thought I would.  I used to read mostly mysteries and now I find myself becoming a more eclectic reader.
  2. I love being outdoors when the pollen and mold counts aren’t too high and going for walks.  I tried bicycling but it sends my asthma into a tizzy.
  3. I love old movies, especially Katharine Hepburn, Audrey Hepburn and Doris Day.
  4. I wet sanded the entire primered body of my 1964 Chevy Impala that my dad was restoring for me in preparation for being painted.
  5. I hated riding the bus in high school so rather than catch the bus a few blocks from my house to take me to the high school I attended, I walked the approximately 2 miles each way even in the cold and even in my short skirts and heels (we weren’t allowed to wear jeans or even pantsuits at the time).
  6. I love the fact that in less than a year I have 63 followers to my blog and have published over 200 posts.
  7. I was nominated to Who’s Who in Junior Colleges.
  8. I nailed off the entire sub-floor of a 2500 square foot house by myself.
  9. I want to be in Disneyland right now with my grandchildren but can’t because there is no place for me stay.
  10. I am finishing up the final stages of my book in preparation for submission.
  11. I enjoy crafting and sewing.  At one time in my life I had a boutique every year at Christmas where I sold my bears, dolls and other crafty things I made.

My 11 questions from doilooksick.

1. You don’t look sick. How do you look? In my mind I still look like I did thirteen years ago before I got sick.  My hair is colored, I am wearing my contacts, and I am wearing make-up.
2. What was your favorite thing that happened on valentines day this year?  My husband ate a simple dinner with no special dessert while I ate my lamb stew in preparation for my allergy treatment.
3. When you tell people about your illness or health problem, what would you like to hear in response?  How does this affect you?  I am so sorry that you have to live within such strict guidelines.  What can I do to make it easier for you to be around me (and really mean it).
4. What’s one skill you’d really love to learn? I would love to learn to tat.  As a highschooler an elderly woman my mom was caring for tried to teach me and I had no patience.
5. What’s one thing you’re wanting? A trip that is further away than a day trip where I can spend the night in a hotel, eat whatever I want, and go shopping.
6. What’s three things you’re thankful for? I am thankful for a husband that is still with me after my life became so complicated.  I am thankful for family that understands and are willing to accommodate my crazy life.  I am thankful that both my daughters have partners that do not think I am crazy  and have accepted my life since day one.
7. What has changed in your life in the past five years?  My sensitivities have improved some through treatment and I have been blessed with the addition of the last two of my three grandchildren.
8. What would you like to be different in five years? I would like to world to be more aware of chemical sensitivities and the ravages of mold exposures and I would like to be well enough to take a trip.
9. Do you have many friends or just a few close friends?  That is a good question.    I have about four friends that have hung with me through this illness and I have become close friends with a few that I have met along my way because of this illness.
10. What’s the funniest thing that’s ever happened because of your illness or health problem? There have been a few that I can think of.  The funniest one was one that I talked about here in my blog.  My daughter and I were on the side of the road trying desperately to get a garbage bag over her hair because she had just had it done and it was making me sick in car when I highway patrolman pulled over to see what the problem was.
11. What’s your dream job? Gosh, I don’t know if I have a dream job.  I have learned to love writing since working on my book and starting this blog.  I also love to sew.  I would love to have the energy and stamina to make clothes for little children who have nothing.  A friend and I once said years ago that it would be nice to make Easter dresses for little girls and give them away.  I do, however, work on quilts when the mood and energy level are just right that I donate to a children’s hospital.

My 11 questions to those I have given the award.

  1. What is your favorite childhood memory?
  2. If you could pick someone famous to support your cause, who would it be and why?
  3. How many books do you currently have on your shelf or e-reader waiting to be read?
  4. As a child, what did you want to be when you grew up?
  5. What is your favorite holiday?
  6. If you could cure one illness, what would it be?
  7. Do you like surprises?
  8. What are you most thankful for?
  9. Who is your hero?  Why?
  10. What is the last blog you have signed up to follow?
  11. What is your favorite song?

 

Sulfites and Drugs

I know many of you out there might not use medications. But at some point in your life, there may not be an option in order to stay alive. I have discovered that there are medications that contain sulfites. I am sure this list is by no means complete as new drugs and variations of those drugs come on the market daily. Following is what I have learned about drugs and sulfites.

Bronchodilator solutions for asthma

  • Adrenalin chloride 1:1000 concentration
  • Bronkosol
  • Isuprel hydrochloride solution

Topical eye drops

  • Pred-Mild
  • Pred-Forte
  • Sulfacetamide
  • Prednisol
  • desamethasone

Injectable medications

  • Amikacin
  • Betamethasone phosphate (Celestone)
  • Chloropromazine (Thorazine)
  • Dexamethasone phosphate (Decadron)
  • Dopamine
  • Epinephrine (Adrenaline, Ana-Kit, Epi-Pen)
  • Garamycin
  • Gentamycin – I have taken this before and reacted.
  • Isoetharine HCI
  • Isoproterenol (injectable)
  • Lidocaine with epinephrine (Xylocaine) When I needed this before, I had to get it preservative free.
  • Meperidine (Demerol)
  • Metarminol
  • Norepinephrine (Levophed)
  • Procaine (Novacaine)
  • Prochloroperazine (Compazine)
  • Promethazine (Phenergan)
  • Solutions for total parenteral nutrition and dialysis
  • Tobramycin

General Anesthesia Drugs

Sites I visited to get my sulfite information:

http://www.webmd.com/allergies/guide/sulfite-sensitivity

http://ww.sulfites.org/sulfite-foods

http://nutrition.about.com/od/recipesmenus/a/organic.htm

http://www.allergy-and-diabetic-health.com/sulfite-free-foods-no-way-out-to-survive-the-fight-goes-on.html

http://www.allergy-and-diabetic-health.com/sufites-in-bleached-sugar-beet-and-cane.html

http://www.wikihow.com/Live-With-an-Allergy-to-Sulfites

http://allergies.about.com/od/foodallergies/a/sulfites.htm

Sulfites and Food

Ok so this is part three of my story on sulfites. I hope you all are not tired of hearing about them yet. The list of foods is long. Somehow the lists I have found don’t seem to be as lengthy as what I remember. But then again, with my brain fog and the fact it was about thirty years ago it is hard to know for certain.

Before I start listing the foods I will respond to a question a friend of mine asked. She wanted to know if organic foods were safe from sulfites. From what I have read that they are not allowed in organic foods in the US. I also read that organic foods that travel over borders can be sprayed with sulfites or sit in a tub of sulfited water or ice to prevent browning.

Foods with naturally occurring sulfites are grapes (why even organic wine can contain a certain level of sulfites), onions, garlic, salmon, leeks, lettuce, chives and asparagus.

The FDA has broken down the foods with sulfites by category in their FDA Guide to Foods and Drugs with Sulfites.  The Sulfite levels have also been categorized by ppm (parts per million and shown in red) with greater than 100 ppm considered very high (strict avoidance), between 50 and 99.9 ppm considered moderate to high (avoidance advised in those with sulfite sensitivity), between 10 and 49.9 ppm considered low to moderate (may cause symptoms to those with severe sulfite allergy), and less than 10 ppm considered very low levels (generally do no pose a risk even to those with sulfite sensitivity).

Alcoholic Beverages (beer, cocktail mixes, wine, wine coolers) Wine is in the very high and beer is considered very low.

Baked Goods (cookies, crackers, mixes with dried fruits or vegetables, pizza crust, Quiche crust, flour tortillas) Low to moderate level.

Beverage Bases (dried citrus fruit mixes) Very high level.

Condiments and Relishes (horseradish, relishes, pickles, olives, salad dressing mixes and wine vinegar) Low to moderate with wine vinegar being in the moderate to high level.

Confections and Frostings (brown, raw, powdered or white sugar derived from sugar beets) Very low level.

Modified Dairy Products (filled milk – when vegetable oils are substituted for animal fat) Not available.

Fish and Shellfish (canned clams, fresh, frozen, canned or dried shrimp, frozen lobster , scallops and dried cod – my lobster experience was mentioned in my first post Low to moderate level.

Fresh Fruit  and Vegetables (potatoes) Very low level.

Gelatins, Puddings and Fillings (fruit fillings, flavored and unflavored gelatin, pectin) Very low level.

Grain Products and Pastas (cornstarch, modified food starch, spinach pasta, gravies, hominy, breadings, batters and noodle/rice mixes) Very low to moderate.

Jams and Jellies (because of the pectin) Very low.

Nuts and Nut Products (shredded coconut – although I have found unsulfured coconut) Very low.

Plant Protein Products (canned, bottled or frozen juices including lemon, lime grape and apple; dried fruit; canned, bottled or frozen dietetic fruit or fruit juices; maraschino cherries and glazed fruit) Moderate to very high level.

Processed Vegetables (vegetable juice, canned vegetables including potatoes, pickled vegetables including sauerkraut, dried vegetables, instant mashed potatoes, frozen potatoes and potato salad) Sauerkraut is in the very high level while the other items seem to fall in the low to high levels.

Snack Foods (dried fruit snacks, trail mixes, filled crackers) High to very high levels.

Soups and Soup Mixes (canned seafood soups, dried soup mixes) Low to moderate levels.

Sweet Sauces, Toppings (corn syrup, maple syrup, fruit toppings, and high-fructose corn syrup, pancake syrup) Very low to Moderate levels.

Tea (instant tea, liquid tea concentrates) Not available.

My last post on sulfites will discuss medications that may contain sulfites.  I will also provide links to some of the various sites I used when obtaining this information so that you may view them yourself in their entirety.