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

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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. 


How I Deal With Chronic Pain

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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. 


What ALS Looked Like To Me

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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.


The Gift of Today

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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.


Enjoy Those Years!

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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.


Human Again

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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!

 


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.