Health, Reflections, Story of my Life

Delta Airlines Doesn’t Know Peanuts or A Defense Of “Crazy” Food Allergy Parents

I am on a Delta Airlines flight and they just offered me peanuts. We usually fly American Airlines, so I was shocked. Luckily my daughter is not with me or I would be freaking out. 

Why? I am the mom of a child with food allergies. And sitting near someone eating peanuts could kill her. Literally. Last time I checked, an airplane is not a great place to have a major medical emergency. Unlike milk or eggs or most other food allergies, peanuts somehow contaminate the air around them and even a trace amount in the air, similar to the way a smell works, can cause a reaction. So why the peanuts when so many have similar reactions? I have no idea. Obviously someone making decisions doesn’t understand the severity or seriousness of the situation. 

My daughter is allergic to all nuts (technically that’s peanuts and tree nuts), any milk products, eggs, and shellfish. She will have a life-threatening reaction simply by being in the same room as peanut butter or getting milk or ice cream on her skin. A tiny bit of the wrong margarine (99% of the ones on the market) can make her deathly ill. This reaction by definition includes more than one body system, such as GI, respiratory, skin, etc. As a mom, these reactions are very scary. You never know how bad it’s going to be this time; each one is different. Maybe this time she’ll “just” throw up and break out in hives all over. But it could be just as likely that her lips and face will swell up and her throat will close off and block her airway and kill her. And as the parent, you’re the one making the on-the-spot call about what to do. Except in an airplane the options are more limited. Even at home it’s a crazy-stressful situation. Can it be treated with just Benadryl? Do I call the ambulance? Give an EpiPen (a shot of epinephrine)? Give 2 EpiPens? Which hospital to use? When seconds matter, you don’t have time to call the doctor. Is this a reaction that will keep getting worse or is this as bad as it will get this time? 
And complicating the situation for some families, the families with no prescription plan, is the fact that the price of EpiPens has increased to where they are now $600 for a pack of 2. Some reactions take 2 to control. And last time I heard, ambulances don’t carry them, so even if your insurance plan covers an ambulance ride and emergency care, you’re still supplying the EpiPens. 

So next time you hear about the mom of a food allergy kid who seems to be taking it a little too seriously, going a bit extreme, put yourself in her shoes. If it was your kid who could die simply from being in the room or on an airplane with peanuts, would you take it lightly, try not to inconvenience someone? I hope not. 

And Delta Airlines, please change your snacks before you kill somebody. 

Health, Reflections

How I Deal With Chronic Pain

I hurt every day of my life. I have for the last 17 years (except the last 2 trimesters of each of my pregnancies). My particular dragon to fight goes by a variety of names: Chronic Intractable Headache, Transformed Migraine, Migraine With Aura, Menstrual Migraine, Migraine Without Aura, and a few others. The particular manifestation shifts at times, but it’s always a headache. The list of treatments I have tried is as long as my arm. Nothing takes it away. Every new practitioner is convinced that THEY have the answer and it’s really so simple. But it’s never quite so simple. 

I say this not to gain pity, but it’s my reality and someone might find my story helpful. 

So what do I do when I wake up hurting every day knowing that the pain will likely grow as the day progresses? Knowing that tomorrow will likely be just as bad if not worse? 

I suppose that sounds rather negative. I think it’s not; it’s facing the ugly truth of reality. As the Bible says in Proverbs 13:12, “Hope deferred makes the heart sick.” I can hope and hope, but after several years of deferred hope I got rather “sick” of it and decided to go with reality instead. The truth sets free. Yes, a miracle could happen, but it hasn’t yet, and I have to go on and live life.

I am inspired by my Grandmother who suffered from migraines, debilitating rheumatoid arthritis, and finally ALS (Lou Gehrig’s Disease); I don’t remember ever hearing her complain. She went shopping on her knotty feet, created Christmases that were unforgettable, expressed her unbelievable love for her grandkids, and generally squeezed every positive moment she could out of her painful life. 

There are things I cannot do. Flashing lights are bad. Loud noise is bad. Exercise is painful. I taught 1 kid to ride a bike and all the running-behind-the-bike triggered a multi-day flare up and put me in bed. So I try not to do things that are going to increase the pain. The day I took the kids skating with a homeschool group and got an aura (the flashing lights only I can see that occasionally alert me that a bad one is coming) in the car on the way there, I had to call in backup because the loud music and flashing lights were just going to compound the pain. The day I woke up on vacation fully intending to go skiing with the family but instead lost my breakfast and lunch and everything else I tried because of a migraine, I had to accommodate. Me barfing on the ski slope would be a memorable family experience, but not one I wanted to create. 

But there are things I CAN do. If I’m going to hurt anyway, I might as well be adding something positive to the pain. Do I WANT to get out of bed? Usually not. Does it help to stay in bed? Only about twice a year. Do I end the day saying “I wish I had just stayed in bed?” Never. Do I feel great throughout the day? No. Do I want to crawl in a hole and pull it in after me? Absolutely. Do I feel good at the end of the day that I actually got some stuff done? Yes. Was the stuff I got done as much as I wanted? Often not. 

Sometimes I have to put the goals really low. Sometimes my goals have to be really short-term. “In the next 10 minutes I’m going to load the dishwasher instead of griping at everyone because I hurt” or “I am going to get through dinner without busting out in tears” or “I’m going to church today with a smile on my face and there I’ll spend time with my Father and worship Him along with my spiritual family.” I have made the decision that I want to get all I can out of life. I will add positive to the pain. Some days are better. Some are worse. I try not to borrow trouble or hope from tomorrow. Today is enough. 

Sometimes, though, I do choose to do big things. I chose to have 5 children. I choose to educate them at home with the best possible education. I direct the music and children & youth departments at church. I travel to Africa with my husband. I bite off more than I can safely chew and then I chew away. Often I surprise myself by what I can do when I have decided I will do it. 

The other decision I have to make is how to present myself to those around me. I have consciously decided that I don’t want to be thought of as “the headache woman.” I talk about it to my family so they know what’s going on, and sometimes, honestly, just to vent. I rarely talk to others about it unless I think it can help them or if I have to explain my behavior. When I am in a loud place and have to wear earplugs or if I am wearing sunglasses inside I might say something. But I have chosen to be a women who has a lot of things going on and oh yeah, I think she has headaches.

How is this working out for me? Quite well, actually. I have a life; I have a busy, fulfilling, contributing-positive-to-the-world life. I have friends. My family is cared for and loved. Is life perfect? No way. Is it better than it could be if I made different, less-positive choices every day? Oh yeah. 

So if you have chronic pain in your life, whether physical or emotional, add something positive to it. Add several things positive to it. Determine that you will get as much out of life as you can in spite of the hand you’ve been dealt. Because it sure is better than crawling in a hole and pulling it in after you. 

Health, Reflections, Story of my Life

What ALS Looked Like To Me

ALS is a big ugly evil monster. Or at least that’s how I imagine it. It attacks its victims’ motor neurons, leaving sensory function and cognitive abilities intact. In other words, it attacks its victims’ ability to control movement, gradually taking away communication and the ability to swallow, walk, control the hands, and eventually, even breathe. All the while, the victim can still feel and think normally. The frustration and fear this monster causes is unimaginable.

Now let me tell you my story.

My paternal grandmother died of ALS when I was 16.  Her disease wasn’t diagnosed until a few days before she died.  How that happened in 1990, I don’t know.  I wish I could discuss that with a few of her doctors, but it’s probably best that I never had that chance.

(If you would like to read more about her and how amazing she was, read my Tribute To My Grandparents)

She had suffered for years from migraine headaches and horrible rheumatoid arthritis.  She was on so many medications that strange side effects were the norm.  When she started exhibiting new symptoms, including a lack of control of her arthritic fingers, the only explanation anybody came up with was that they were just more side effects of the strong meds she was taking.

The next thing I remember is that she started to lose control of her tongue. You don’t think much about your tongue until it stops working. At first her speech was slurred, and then eventually it was not at all understandable. She did her best to communicate, but we were all very frustrated trying to help her. Then she couldn’t swallow. She got so tired of Ensure. And then she couldn’t even get that down. She lost too much weight. Grandpa would try to keep some humor going and would joke with her, cajoling her to eat, but we all knew it wasn’t funny. We didn’t know what to do, though. Why a doctor didn’t suggest a feeding tube, I’ll never know. Probably best that I don’t discuss that one with them either.

Her arthritic feet had been surgically fused together to help her arthritis. This combined with her ALS was a recipe for falling.

The progression took years, but she finally lost control of her fingers, hands, arms, and then she was gone.

She never lost her will or her positive attitude. She wasn’t going to let this monster, though she didn’t even know its name, take that from her. It was the only thing she had left that she could control, I guess.

She was mentally sharp until the very end. Perhaps that’s the worse thing about this slow creeping disease. You can feel and think just fine. What you can’t do is move. And what good is thinking and feeling if you can’t move or function or communicate?

My grandfather was her caretaker. He was a champ. This manly tough oilfield welder loved and cared and nurtured until her fight was done. A year later he also died. They just belonged together, I guess.

So if you hear of ALS, know that it is an indescribably horrid disease that nobody conquers. It is a monster, ugly and unstoppable, taking down every victim it attacks. Maybe someday that will change.

Health, Reflections, Story of my Life

The Gift of Today

Today was a gift. A wonderful, glorious, marvelous gift.

You see, this morning I started getting a migraine. (My migraines like to make a big announcement with flashing lights, so I knew it was coming.)

Lucky for me, I had a headache appointment yesterday where the nurse practitioner gave me several new meds to try. Well, they weren’t really NEW, since I’ve tried them all before and they never worked. Actually, nothing ever works, so I didn’t hold out much hope.

Today, it worked! Within about 2 hours I was up, eating, and functioning normally; well as normal as I ever do.

So today was a gift. Instead of lying in bed with intense pain in 1/2 of my head, I was able to do all my normal stuff.

But you know what? Actually every day is a gift. I have freedoms and friends, life and love, health and happiness that I take for granted every day.

But not today, because today was a gift, direct from heaven above, delivered to me. I didn’t take it for granted today.

Hopefully I’ll remember that tomorrow and the next day, too, when little frustrations happen, when the kids argue, when I forget what I’m supposed to remember not to forget.

I’ll remember that it could be worse. Much worse. But it’s not. And that’s a gift.

Health

Enjoy Those Years!

I’ve become those elderly women who stop you in the supermarket when you have an infant and 2 toddlers with you and you’re just trying to get a loaf of bread and also keep them from destroying aisle 3. These lovely women say “enjoy these years because they grow up too fast”. Meanwhile you’re sleep deprived and just want 2 minutes of quiet without wondering what’s being pulled off the shelf in the next room. You hear “mommy” 3,254 times a day, usually followed by a request to help with something or avert an emergency.

But really, this childhood thing goes lightening fast! Believe it or not, the babies will sleep through the night, learn to control their body functions, and even sometimes clean up their own messes, occasionally without being told. Discipline will change from counting to three and time outs to more creative forms of getting their attention. But they’ll never be a baby like this again. Eventually that little boy who plays with dirt will need to shave. That little girl smiling in that pink, red, and orange outfit because she dressed herself will have her first crush.

And you’ll breathe a sign of relief, but you’ll realize that, like me, you’ve joined the club of old women who tell those young moms, “enjoy these years because they grow up too fast”. And you’ll be right.

Health

Human Again

imagesThere’s a saying where I come from that says, “They look like something the cat dragged in.” It’s not a compliment. Well, having a non-functioning thyroid makes you feel like “something the cat dragged in.”

The thyroid is a butterfly shaped gland that regulates metabolism and energy levels.  This sounds like no big deal until it stops working.

I know because my thyroid has lately decided to call it quits. My nurse practitioner had never seen thyroid lab values as out-of-whack as mine. One of those tests, the TSH, should be between 0.36 and 3.74. Mine was 69.5. She’s not sure how I was functioning at all. I guess she doesn’t know how stubborn I am.

Since being diagnosed with hypothyroidism I have met many other people with this problem. According to the NIH, 4.6% of the US population 12 years of age and older have hypothyroidism. This is a diagnosis that affects not only the patient, but also the other people in the patient’s life.

I didn’t even know that I had a problem because the symptoms developed so slowly.  I got so used to feeling awful that I thought it was normal.  Soon after my diagnosis, before treatment began to have an effect, I wrote a description of what I felt like. In order to help understand how it feels to have an underactive thyroid, I will share below some of my symptoms and what they felt like to me at that time. If you are experiencing these symptoms, please see your doctor and don’t let it get as extreme as mine was.

Here’s what I wrote:

Fatigue – This is a bone-deep weariness, unrelieved by sleep. My body is using every resource just to make my vital organs work. There’s none left for unimportant things like, say, energy or ambition. Something simple like grocery shopping or walking to a single store in the mall exhausts me for the rest of the day.

Increased sensitivity to cold – I am like our lizard looking for the warmest spot to soak in some heat. Last Christmas I sewed bags of dry rice for family members to warm in the microwave and use as heating pads. I also made myself a large one, and it has become my best friend. I pile on the covers in bed and still wake up cold after several hours of sleep.

Unexplained weight gain – This one is very simple. If I don’t diet, I gain weight. If I diet, I gain weight anyway. I could eat anything or nothing and still gain weight. Just as my metabolism only has enough energy for my vital organs, and none for ambition or energy, I’m also not burning as many calories as I normally would, so I gain weight. They tell me that once my thyroid medication kicks in and my blood levels are normal again, I will feel better in many ways, but the weight I have gained will not leave in the same easy manner that it arrived. However, if I work at it, I will be able to lose weight, which is more than I can do right now.

Muscle weakness – Did I mention that five minutes on a stationary bike feels like I just ran a marathon?

Pain, stiffness or swelling in your joints – When I get up in the morning, my joints feel like I am about 30 years older than I am. I take steps one at a time.

Thinning hair – With all the hair I gather off the bathroom floor after I brush my hair, I’m surprised I have any left on my head. What I do have left on my head is very brittle and has all the smooth texture of straw.

Slowed heart rate – Normally a slow heart rate is good, but in this case it is not.

Problems concentrating – “Brain fog” is a term used for this symptom because it feels like that thought is just beyond your grasp and you can’t quite reach it.  It’s right there…almost.  I estimate that my IQ is probably about 2/3 of what it used to be.

Low body temperature – 98.6 is never reached. Remember that part about the lizard in the sun?

Depression – I wouldn’t call what I feel depression as much as I feel apathy. It’s just been very hard to get motivated to do anything. But I guess this one could be a lot worse. It’s not too extreme.

Impaired memory – I need to make a list of the lists I make. I have always been forgetful and air-headed, but lately I’ve taken it to a whole new level. The other day I drove somewhere and literally forgot which route I took. My husband tells me things, and not only can I not remember what he said, but I have forgotten the entire discussion, never to be remembered again.  Until I figured out that my thyroid was low I was concerned that maybe I had Alzheimers.

I am feeling better and better as my medications get my body back to normal.  I am feeling human again.  As the words to the Beauty and the Beast song say:

When we’re human again
Only human again
When the girl fin’lly sets us all free
Cheeks a-bloomin’ again
We’re assumin’ again
We’ll resume our long lost joie de vie
We’ll be playin’ again
Holidayin’ again
And we’re prayin’ it’s A-S-A-P
When we cast off this pall
We’ll stand straight, we’ll walk tall
When we’re all that we were
Thanks to him, thanks to her
Coming closer and closer
And closer and…
We’ll be dancing again!
We’ll be twirling again!
We’ll be whirling around with such ease
When we’re human again
Only human again
We’ll go waltzing those old one-two-threes
We’ll be floating again!
We’ll be gliding again!
Stepping, striding as fine as you please
Like a real human does
I’ll be all that I was
On that glorious morn
When we’re fin’lly reborn
And we’re all of us human again!

 

Faith, Health, Reflections

Same Old Same Old

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Before Sunday evening prayer service, one our ministers allows people to share prayer needs with the congregation. We allow, even encourage, our children to speak their requests.

My 2 daughters always name the same things: my older daughter’s skin condition and my chronic headaches. I am told they also name these same requests every Wednesday night in their Kids’ Bible Night classes.

So recently my seven year old decided to save a little time. She raised her hand, waited to be called on, and then said, “Just the same old same old.”

There was a pause, and then the adults in the congregation laughed out loud. This was funny on several levels. First, the way she said it was funny. I didn’t even know she knew the phrase “same old same old.”

Mostly, though, it was funny because so many times in prayer we all feel like that. “Okay, God, not much has changed. You’re still awfully good to me. I’m still a sinner making mistakes and needing forgiveness every day. And I still need pretty much the same things.”

So what’s the point? The point is that we need to say it for our own sake. We need to be reminded of all of those things. We need to exercise our faith, continuing to trust Him for our needs. We need to include God into our lives.

We probably want to verbalize it a little differently, but “the same old same old” is not necessarily a bad thing.

DIY, Health

DIY Easy Reversible Breastfeeding Drape

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I breastfed my babies for about 4 years of my life, and I have nursed my babies just about everywhere. I am a modest person; I am very open about bodily functions (me being a nurse and all), but exposing myself isn’t something I want to go around doing. My go-to nursing drape at that time consisted of the largest receiving blanket I could find (which was never QUITE big enough), a shoestring, and 2 safety pins: not exactly a classy accessory. After I was all done breastfeeding, my daughter’s eczema was just awful and I learned how to sew well enough to make her some non-itchy clothes. I made some breastfeeding drapes for presents at baby showers, nice large stylish ones with adjustable straps, and they’ve been a big hit. I like my design better than any others I’ve found (I don’t like the ones with boning in the front. They allow you to see the baby eating, but they also allow anyone sitting next to you to do the same,) so I’ll share with you how I make them. They are REALLY simple.

Warning: If you are really good at sewing, these instructions will seem way too detailed and simple. I am in no way a professional seamstress, so if you’re a beginner, that’s okay. You do need to know how to cut material, sew a stitch, and put in a button and buttonhole.

Time to complete from start to finish (not counting washing/drying time): 1 1/2 – 3 hrs (depending on skill level).

Supplies needed:

– 2 pieces of coordinating material, 36″X 44″ You want something thick enough to not be flimsy, but thin enough to not make you and the baby hot. Remember, it will be double thickness, and hopefully even a baby born in the autumn will be breastfed through at least part of the summer, so lets not smother the little thing! I usually get a pretty cotton fabric in the quilting section. This pattern needs something that doesn’t have a one-way design but can just go any-which-way. I like to pick a material that is discreet and doesn’t yell, “Hey, everybody look what I’m doing over here” but is also classy and something a lady would wear. I see these as more for the mom than the baby, so I avoid a babyish pattern. But those are just my thoughts. You may want something entirely different.

These instructions make the sides of the drape the selvage/factory edge and the top and bottom the cut edges, so make sure that works with your material’s design.

So here goes.

YOU WILL NEED:

– 1 large button, the bigger the better. At least 1 3/8″ is great. (As you can see here, 1.25″ and less is considered a choking hazard by the Child Safety Protection Act.)

– Thread that either matches or accents with the material. The thread WILL show.

– Velcro, 10 inches long, 1/2 inches wide. I always use the sew-on kind. I’ve been tempted to try the heat-bond kind, but I’m afraid of it coming off at just the wrong time. Nope, don’t want that!

– Sewing-type flexible tape measure

– Scissors

– Straight Pins

– Dull pencil

– An iron

– Something with a right angle, such as a piece of paper or a book

– A straight edge

– A writing pen

– Sewing Machine with button hole setting

IT’S ALSO NICE TO HAVE:

– A Yardstick, or even better, a t-square

– Air soluble marker

Instructions:

1) Wash and dry your material just as you plan to wash the finished product. Use the same washer and dryer settings and detergent so you don’t get any surprises when you wash it later. Iron your material and cut off any threads that have bunched at the edges during washing.

2) Wind your bobbin and thread your machine.

3) Your material probably shrunk in the washing/drying process. That is the point, after all. The length from selvage to selvage, whatever that is now, will be how wide the drape is. You want to leave the selvage as is, make the corners square, and make the 2 pieces the same size. How? Do this. Probably one piece will be slightly smaller than the other. Work with it first. Make the sides and corners of the smaller piece even, straight, and square. This is where a t-square or yardstick will come in handy. If you don’t have those things, use a straight edge of some kind and a square corner (like a piece of paper or a book) to create a 90 degree angle. Leave the selvage uncut. Use it as the basis of your square corner. Use your air-soluble marker (or pen if you don’t have one of those) to mark the edge you want, and cut it out. Once you have one rectangle as you want it, place the other piece of material under it, right sides together, and cut the second to match the first. Now you have 2 nice, even, matching rectangles.

Find the cut edge, not the selvage. Cut off a 3 1/2″ strip of material from the bottom of each of your 2 big rectangles. This will be your strap. Cut off the end of each strap piece so they are each 29″ long. After you are done cutting, you should have 4 pieces of material: 2 big rectangles and 2 long strips. The strips will be 3 1/2″ x 29″. The big rectangles should be somewhere around 30″x40″ but it will vary a little.

4) First we’ll work with the 2 big rectangles, so set the 2 long strips aside for now. Put the 2 rectangles with right sides facing each other, match the edges up, and pin together or baste around the edges. This will be the body of the drape.

photo

5) Sew around the edge with a 5/8″ seam allowance. (On the selvage edge, sew it just inside where the printing starts. It will probably be a little more than 5/8″. Go all around except leave a 7 inch opening on one side. Use your scissors to cut a small snip in each corner. Be careful not to cut the stitch you just made.

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6) Using the 7 inch opening, turn your material right-side-out.

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7) Using a pencil stuck through the opening you left, poke the corners out so they’re not squared off and not rounded. Do this gently so as not to poke holes in your material.

photo 4

8) Press your material with your iron. Put your hand inside the opening and push the seams tight as you iron them. Make the edges nice and crisp. The seam should be at the edge of the pressed material. Don’t iron the opening yet. Of course, don’t iron your hand.

photo 5

9) Fold an edge at the 7 inch opening to match the rest of the edges that are sewed, and iron flat. Pin the opening shut.

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10) Now sew a stitch 3/8″ from the edge all the way around, paying special attention to secure the opening you left before.

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11) Now fold it in half, placing the sides (the selvage ends, the shortest sides) together. Place a pin at the top at the 1/2 way fold or mark it with your air-soluble marker. Measure 3 1/2″ on one side and make your buttonhole up and down, perpendicular to the edge.

photo 2

12) Now measure 3 1/2″ on the other side of the 1/2 way pin and place the end of the soft, loopy side of the Velcro there, extending toward the side-edge of the drap. Put it just inside the stitch you made in step 10. Pin it in place. Sew as close to the edge of the Velcro as possible while still catching the edge. Take out the pins as you go, not sewing over the pins.

photo 3

(My measurements are a wee bit off in this picture. Sorry for that.)

13) Now set that aside and get out the 2 long strips you cut in step #3. As I said before, this will be the strap.

14) Put the 2 strips right sides facing each other, match the edges up, and pin together or baste around the edges, similar to how you did the large rectangles in step #4.

15) Sew around the edge with a 5/8″ seam allowance. Go all around except leave a 4 1/2″ opening on one side. Use your scissors to cut a small snip in each corner. Be careful not to cut the stitch you just made.

16) Using the opening, turn it right-side-out.

photo 8

17) As before, using a pencil stuck through the open end, carefully poke the corners out so they’re not rounded.

18) Iron your strap. Put your finger or use the pencil inside the opening and push the seams tight as you iron them. The seam should be at the edge of the pressed material. Don’t iron the opening yet. Again, don’t iron your finger.

19) Fold an edge at the opening to match the rest of the edges that are sewed, and iron flat. Pin the opening shut.

20) Sew a stitch 3/8″ from the edge all the way around, paying special attention to secure the opening left before. Now your strap is sewed.

photo 9

21) At one end of the strap, attach the button just inside the stitch.

photo

(This button is smaller than I like. Get a bigger one for yours to be safe.)

22) At the other end, on the same side of the material as the button, pin the rough strip of Velcro, the side with the tiny little hooks. Sew as close to the edge of the Velcro as possible while still catching the edge. Take out the pins as you go, not sewing over the pins.

photo 10

23) Now the strap is done. You are almost finished.

24) Button the strap on the drape. Put the strap around your neck and velcro the other end.

photo 4

TA-DA! YOU ARE DONE!

 

Health

Food Allergy Tips for the Newly Diagnosed or I Wish I Had Known Then What I Know Now

Though I am trained as an RN, this blog is intended to share our personal story, not to give medical advice. Please consult a doctor for any medical advice you may need.

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My 4-year-old daughter had severe eczema that was totally out of control. Her skin would crack and ooze and redden and swell and itch mercilessly. Her practitioner decided to do a round of allergy testing. Since her skin was so bad, they did the blood test instead of the skin pricks. I didn’t think much of it; they had done this when she was less than a year old and she was allergic to eggs and peanuts (and dog, but we don’t eat much dog), but that was all. We had gotten used to the egg and peanut allergies. As she started eating table food we adapted her diet to fit her; she kind of grew with it. Well, when this round of tests came back, she was allergic to EVERYTHING food-wise. Her practitioner picked out a very few foods that she thought were safe, and my daughter basically ate those same foods for about a month. To the list of eggs and peanuts to avoid, we added corn, wheat, oats, tree nuts, shellfish, apples, milk, fish, beans, peas, carrots, garlic, spinach, sesame, and soybeans. Oh, and also she had to avoid eating anything containing these foods, any derivative of these foods, and anything processed on the same equipment as these foods. Feeding her was suddenly very tough. At 4 years old, she didn’t understand what was going on and would sometimes sneak foods she wasn’t supposed to have. (Did you ever try to feed a 4-year-old the same 5 things for a month?) We gradually added in one food at a time to see what her reaction would be. About twice a week we would try a food from the forbidden-food list. Sometimes after eating a food she would get really itchy and break out, so I would pull her back off that food and mark it as questionable. Her skin was so volatile that it could be from the food, or it could be some other unknown. Then I would wait several days and try it again. If she reacted twice, I marked it down as a for-real allergy. We determined, after the whole process of elimination was done, that she was truly allergic to eggs, peanuts, tree nuts, shellfish, milk, sesame, and soy: a formidable list, but certainly much better than the original one.

Having dealt with her allergies for the last five years, I have learned many things that I wish I had known when she was first diagnosed. Here are some of them:

1) False positives abound – Especially if your child has eczema, the results from allergy tests will probably show lots of things they’re allergic to. They are almost assuredly NOT allergic to all these things, but you must be patient and work the process to find out how she reacts to actually eating the food. One day maybe they’ll have a better process, but for now, this is it. Do as we did: find a few things allowable. Then, every 3 or 4 days try a food on the forbidden-foods-list. If the food doesn’t affect them negatively, you’re golden.

If the test says it IS okay, it probably is. There aren’t too many false negatives. http://drrobertwood.com/beware-false-positives.shtml

2) Become a label reader – Learn what to look for. The Big 8 allergies are: milk, eggs, fish, crustacean shellfish (crab, lobster, shrimp, etc.), tree nuts (walnuts, almonds, pecans, etc.), peanuts, wheat, and soybeans. In the US, food companies must declare if a food contains these. However, there are several ways they might do this. For example, if it contains wheat flour it might just say that in the ingredient list.

Sometimes it will be in Bold:

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Sometimes it will not:

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If it contains whey or casein or cheese or any other milk derivative, it should say something like “contains milk” below the list:

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Or it could follow the ingredient right in the list with a parenthesis like “cheese (milk).”

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Some products are wonderful and list it really plain in bold print at the bottom of the list. Some are hidden in a 10-line-long list of ingredients. It’s like extreme hide-and-seek. But they do have to declare it in some way.

Companies do NOT, however, have to declare if the food was prepared in the same facility as one of these allergens. Even if they did, does that mean that it’s in the same building but ½ block away, or does it mean that the same conveyor belt for the “Peanut Delights” candy is used for the “Unpeanut Delights”. (Sing with me now: Almond Joy’s got nuts. Mounds don’t.) Or it could mean that the same conveyor belt is used, but it’s been several days since a batch of peanuts touched the belt and it’s cleaned thoroughly every day. You can see the problem. It does seem from my experience that name brand products are a little better about declaring things more clearly than generic items.

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As always, the best things are fresh, homemade, and simple. My daughter actually eats healthier than the rest of us. If you are still confused or want more information, you can go to http://www.fda.gov/food/resourcesforyou/consumers/ucm079311.htm for more.

3) Anaphylaxis!!! – This is a big scary word for a full-body, multi-system allergic reaction. In other words, if you only get hives (skin), it’s not anaphylaxis. If you just throw up (digestive system), it’s not anaphylaxis. If you only wheeze (respiratory system), it’s not anaphylaxis. However, if any 2 body systems are affected at once in an allergic reaction, it is considered anaphylaxis. Now, to make things a little more complicated, some of the symptoms are not readily apparent (blood pressure changes, for example). Or if you pass out (technically only one system) you obviously won’t be able to know or communicate what else you’re feeling. Take a look at this link because it describes it a lot more thoroughly than my little summary can. http://en.wikipedia.org/wiki/File:Signs_and_symptoms_of_anaphylaxis.png

Click here to go see a printable “Food Allergy & Anaphylaxis Emergency Care Plan.”  You should ask your doctor to fill this plan out for you so that it is individualized to you.  Make sure you understand the actions for each possible situation.  If in doubt, call 911 while you take a dose of Benadryl, give a shot of epinephrine (click here to read about the different epinephrine auto-injector options currently available), and you’ll get an ambulance ride. Once at the hospital, they will keep you there until the epinephrine has worn off to make sure the symptoms don’t come back. In some states, ambulances do not carry epinephrine, so make sure you keep yours on you at all times. Also, do not leave them in a hot or cold car as it can damage the medicine. I keep one set in my purse and one set at home. (If your child attends school or daycare, you will need to check their policy concerning accessibility, storage, and delivery of epinephrine and Benadryl. Since I homeschool my children, I am not knowledgable in this area.)

4) Restaurants – Most people eat out. To not do so at all is quite unreasonable. In the 5 years since we discovered all these allergies, my daughter has never had a reaction from eating at a restaurant. We don’t eat out a lot, but we do go on vacation and have the occasional fast food lunch or birthday celebration at a restaurant. Here’s what I’d advise. Print up some little business cards (Avery labels from Staples work great) that say “My name is Soandso and I am allergic to: …” and list your allergies.

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If you live in an area with a lot of hispanic kitchen workers you might want to get it translated into Spanish.

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When you go out to eat at a sit-down restaurant, pick something from the menu that you think will work for you, or make up something that you think would be doable for them. Order that, give the waiter the card, and then ask them to double-check the ingredients and make sure it doesn’t include anything on your card. We often ask for a grilled chicken breast with no rubs or seasonings with steamed veggies with no butter. Most places will happily comply. (They don’t want a lawsuit or bad publicity, and they do like big tips. If you leave a big tip to a good waiter you can count on good service in the future and have secured yourself a safe place to eat.) As far as fast food or chain restaurants go, they are actually a little easier than one-of-a-kind restaurants. Almost all chains now have websites with allergy information on them. Check ahead of time and pick out a few things that work. I know at McDonald’s my daughter can have a plain hamburger and chicken nuggets; no fries. At Arby’s it’s a roast beef sandwich with no bun (yep, a sandwich with no bun) and curly fries and cherry turnover. (Arby’s often has all their employees change gloves when you tell them you have a food allergy! Yeah!) If we go by Dairy Queen for a treat, she can have an Arctic Blast. Every great once in a while restaurants will change their ingredients, so re-checking is good. I use an app called Allergy Caddy that helps me when it’s a spontaneous on-the-go situation, but they can’t always keep up with changes. If you discover something wrong, notify them and they’ll update their info. Some places are just impossible; I love little hole-in-the-wall mom-and-pop restaurants but they are flat-out dangerous if my daughter is along. The employees of these wonderful little spots often don’t have a clue about what an allergy means. (One time at a little place I ordered “a hamburger, no cheese because my daughter has a milk allergy”. I made it as clear as I could. NO CHEESE! The guy comes out with a burger with a slice of cheese on it. When I said she couldn’t have cheese he just took the slice off and tried to give it back to me. Eye-yi-yi! Scary stuff, right there!) Avoid buffets: you can’t check the ingredients and people switch up the serving spoons all the time. Chinese restaurants are out if you have a peanut, sesame, or soy allergy.

5) People will not fully understand; don’t expect them to – They try, and their intentions are good. Educate if it will do anyone any good. Don’t give anyone a 2 hour lecture about the dangers of peanut clusters or the evils of inaccurate food labeling. Use your noggin in filtering good advice from bad. Be kind. Teach people “Don’t Feed The Bear”, so to speak, and teach your child to check with you before eating anything. An older child can understand, but a little one cannot be expected to “get it”, especially at first. Those closest will have to have a few very basic instructions, but don’t expect them to “get it” either. Somebody has to be the point person who is making decisions and giving orders.

6) You’ll get it – It’s like drinking from a fire hydrant at first. There’s so much information coming at you and so many changes you feel totally overwhelmed. Eventually you will figure out what you’re really allergic to, and you’ll learn to cope with those specific things.

7) There is hope – Many people outgrow their allergies, though not all do. Prepare yourself that you may not outgrow any. Then if you do, it’s an added bonus. My little one just outgrew her soy allergy. Yee-haw! Also, there is extensive research going on for a treatment for these food allergies, and I believe one day we’ll have the cure. Just not yet.

8) Little specific-food tidbits I’ve learned –
For egg and milk allergy, find a health food or natural food store that offers vegan foods. Egg replacer, fake cheese, and even fake ice cream, can all be found there. Just watch out for soy and nuts if those are allergies you also have, because many, even most, of these vegan items have soy and/or nuts.

Even with a soy allergy, most people can have soybean oil and soy lecithin, so some things that say “contains soy” at the bottom may actually be perfectly safe. Do a little test by trying soy lecithin and soybean oil (one at a time) to make sure it’s safe for you, and then read the labels more specifically than “contains soy”. If it’s soy lecithin or soybean oil the label will probably say “contains soy” but you can still eat it. However, be careful because some things have BOTH soy flour and soy lecithin. That’s obviously out. This is one that restaurants do not at all understand. If it has soybean oil or soy lecithin they will say it is unsafe. Ask them to read the actual labels for you, or ask them to bring you the label or make a copy of it.

Corn is similar in that many people with corn allergy can eat corn oil and corn syrup. Again, figure out your allergy and your body, and read labels like crazy.

9) No insult intended, but read “Food Allergies For Dummies“. It is an easy-to-understand primer, a wealth of information, and it’s written by a doctor who is allergic to peanuts, so he’s lived the experience.

Good luck in your journey. That’s exactly what it is. And though it’s probably not a journey you planned or wanted, it can definitely be managed and it doesn’t have to shut down your life.

 

Faith, Health

What a Headache!

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Every minute of every day I have a headache. Sometimes it is just below the surface of constant consciousness, and sometimes it is bad enough that I can feel my pulse in my head and hurts to move at all. It tends to get worse as the day goes on. Certain things increase the intensity of it: weather changes, hormone fluctuations, stress, and schedule changes. Obviously, none of these things can be avoided.

I have seen numerous doctors and tried basically every kind of drug and treatment that is available for headaches: chiropractic care, herbal remedies, shots, inpatient treatment, IV medications, injections, nasal sprays, yoga, heat, ice, relaxation, distraction techniques, and even acupuncture. Nothing works. I feel like the lady in the Bible with the issue of blood; she saw many physicians yet grew worse.

My husband is the pastor of Newark UPC and is an adjunct professor at Urshan Graduate School. I am the Director of Children and Youth Ministries as well as the Music Director. I have 5 children, ages 7 to 14, whom I homeschool. I cannot just stop life, and I know that if I did I would become a depressed puddle on the floor.

So what do I do? How do I cope?

I have chosen to live my life. Sometimes it is a choice that has to be made on a day-to-day basis, sometimes minute-by-minute. I ask God that He not allow me to face more than I can bear, but even if He does, I know He will make up the difference. His Word says to take no thought for tomorrow, and I try to live by that when it comes to my pain. If I start worrying about how I’m going to get through the rest of life, it becomes too much. If I can get through one day at a time, that’s enough.

In the midst of my problems God has been so faithful. The 14 years that I have had these headaches have been the best years of my life. I have been blessed with a wonderful husband, 5 beautiful children, and great friends. He has provided my every need, and I know He will continue to be faithful as I live day-by-day. I laugh with my children and my husband. I teach my children how to read and write. I help them with their Bible Quizzing. I love and serve the people at church. I continue to choose to live my life to the fullest.

I know that God is able to heal me; that is not in question. Whether He chooses to do so is in His hands. The faith of trusting God through a problem is as necessary as believing that He can remove the problem. I continue to ask Him for a miracle, but until then I will trust His strength and do the work He has put before me.

I truly can do all things through Christ who strengthens me.

Originally Published in the July/August  2012 issue of Reflections Magazine.