Category Archives: Asthma

The ever-changing view

07 Thursday Nov 2019

Posted by in Asthma, faceliftbook journey

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Pieces of the puzzle came together for me last week.

But I’m having trouble seeing the big picture as I’ve been searching for those missing pieces for a year now.

It’s easy to remember when it started. It was November 9, Oldest Son’s birthday last year, and we were on a college visit with Middle Son when I woke up with what seemed like a cold.

Except I didn’t get over it.

I’ve already written a lot about this, so I won’t repeat it all. But something was different about this feeling. Mostly that I lost my senses of smell and taste, and my sinuses always seemed congested. And I was often hoarse or unable to sing.

It just came to me as I was writing this, that this whole scenario happened to me before, a long time ago. Don’t you love it when one memory triggers another?

That time it also lasted about a year, from deep winter of early 1995 to late spring of 1996. The worst part for me was losing my voice. At that time we were very involved in our church, and it was like torture to not be able to sing out, or often to even talk loud enough to be heard.

I remember at the time I felt it was God pulling me back from some pride issues I was having. It may well have been his way of reining in my ego! And when I came to face it and learned to have humility about whatever gifts and talents God had given me, my voice returned to normal.

If I had documented every time I had these same symptoms I think I would find a pattern of my “normal” being limited by things I never thought to look for.

Sometimes I’ve been diagnosed with bronchitis, even pneumonia. More often with a sinus infection. For all these years, other than my long-ago original diagnosis of asthma, health care professionals have not made much of a connection between asthma and my issues.

And not one of them ever thought to test me for allergies.

Until after my near-death experience a few weeks ago.

The Monday following my most recent attack I was with my asthma and allergy doctor. So far we had been tackling asthma issues. I had participated in a couple clinical trials, and found some medications that worked better than what I had been using.

I was able to brainstorm with my doctor for a few minutes, and he was adamant that what I had experienced was not an asthma attack, but an allergic reaction.

And he was right.

I finally remembered taking Aleve an hour before I couldn’t breathe, and as I’ve looked back over the last year I realize I had been taking a lot of Aleve, especially before my worst attacks.

Yes, some of them were asthma, but some were allergic reactions. And some of my asthma triggers are turning out to be things I’m allergic to.

Which brings me up to last week, when I finally got tested for environmental sensitivities.

The worst thing I heard was that I’m allergic to trees. All the trees. All the ones I’ve loved my whole life. My beloved birch trees, that I used to climb as a girl. The willow I loved to drape around me like a beautiful dress and dance around in it.

And the maples I dug up from in front of my parent’s house and planted in our brand new freshly married yard, with dreams of my own someday children climbing and playing in their grown-up shade.

And the pieces fell into place. Why I can’t tolerate being outside for too long. Because it’s not just trees. Add grasses and weeds.

And it isn’t because I don’t want to take a walk or run around on a ball field or explore a forest.

If you could have seen me as a child you would be amazed that I could ever be happy inside four walls.

But for years it has been increasingly harder to enjoy, and I’m really sad to see the reason. Now I have to deal with it.

I’ve been referring to this whole process like it’s a puzzle and pieces have been missing. But when I started writing this post the words to one of my favorite songs as a teenager popped into my head:

“My life has been a tapestry of rich and royal hue
An everlasting vision of the ever-changing view
A wondrous woven magic in bits of blue and gold
A tapestry to feel and see, impossible to hold” (“Tapestry”, Carole King)

That idea of my life as a tapestry has always intrigued me. I do a little needlework, and the backside of a piece often looks drastically different from the finished side. But since adolescence I’ve always been aware that at any time I may be seeing the “pretty” side of my life, or I may have emerged behind what is easily seen to get a different perspective on my situation.

I think I really want to see this as a tapestry instead of a puzzle.

And there’s more. Dust mites. All the dust mites.

I have always known I can’t stir up the dust. This is not a new thing, but I was not constantly plagued with the physical aftermath before this past year.

My way of dealing with this has been to avoid cleaning. Even as a girl I would rather deal with laundry or dishes than vacuum and dust. And as an adult I decided it was better to not kick up the dust so I wouldn’t be sneezing and blowing my nose for days.

So I’m sunk, outside or in.

When I look at this section of my tapestry, will I see God working in the background to move me into a different season of life where he has things for me to do away from the things that cause me discomfort? Or will I see only what I can’t do or be around anymore, things that used to bring me such joy?

And between the two outlooks, I think I’d rather this be about learning a lesson in obedience from God and not about the restrictions imposed by allergies.

And why can’t it be both?

Because it isn’t just funny shaped pieces that somehow fit together.

Life is so much more a moving, shifting work of art. It’s a living canvas, a cloth knit with a changing palette of elements.

And just like in the act of writing these thoughts I saw a thread that entered the scene over twenty years ago, where I am now, whatever is ahead, is no accident.

This design has a designer. And though I may not like or understand what is being woven in me over this past year, I can choose to step off.

And lift my face.

And see that it’s just a small part, a unique and necessary pattern, in a masterpiece.

Constricted

17 Thursday Oct 2019

Posted by in Asthma, Gratefulness journal, Recovery journey

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So to give a little more information about my adventures with asthma (or what I did this summer!), let me take you back to July. I was finishing up my first clinical trial, and for some reason right at the tail end of it I had a pretty bad attack.

For me an attack usually starts with coughing, the coughing is productive and doesn’t let up, and it progresses to wheezing as my lungs get congested with mucus and at the same time the air passages swell, making the space for air to move smaller and smaller.

I lose the ability to talk.

So I have several hours of time spent focusing on my breathing.

I can’t read, play games, even concentrating on tv is too much to expect. I recline or lie down and try to slowly bring air in and out.

The place my mind goes during an attack is a new landscape for me. I’m aware of things immediately around me, but I can’t focus on any of them. Sometimes other people’s voices come through clearly, but I can’t respond.

I’m thinking about how I can’t think too deeply about anything, and I get distracted by my own wheezing, losing even that pitiful train of thought.

I know I’m getting better when the fuzziness of the world around me starts to clear, a sharpness returns like a camera lens that was a little out of adjustment. Only I thought it was clear.

I’ve had mild asthma for years, and never had to do more than use my rescue inhaler once every few months, usually after exercise or going out in very cold or humid air. My “normal” triggers.

But last November I got what I thought was a cold that I couldn’t shake. It settled in my sinuses and nothing I did seemed to help. Meanwhile I lost my sense of smell and taste, started each morning blowing my nose and using a dozen tissues, and lost my voice quite often.

In January I began my adventures with asthma attacks. It wasn’t until after the first one was over that it occurred to me what it was.

I have a really high pain tolerance, and so I was determined to just get back to normal breathing. Even though that took 2 1/2 hours with the first attack, I stubbornly didn’t consider it to be serious.

In February I had a second one. Then in March and April I got help at urgent care, finally getting two courses of antibiotics, which helped not only my sinuses to clear, but also started getting rid of junk in my lungs!

I felt so much better! I had high hopes of spending lots of time piddling in my garden areas this summer.

Then in May I had my third attack. It was on a hot day, humid air, and I had stopped at my daughter’s to plant some flowers I’d gotten her for Mother’s Day.

So much for spending time gardening.

I was very cautious in June, staying inside in air conditioning as much as possible, very aware of my activity and surroundings.

My first clinical trial began in June and it seemed to go well. I was using a better drug than my usual, and I was ready to switch when the trial ended.

But right before my last office visit in early July I had my fourth attack.

This was not part of my plans. I was set to finish the trial that Monday, and leave for five days in Nashville at CR’s Summit East on Tuesday. I had the good meds packed and ready to travel, and I was determined to not let myself get too stressed or tired, hoping to avoid more attacks.

Then a long car ride from Ohio to Tennessee, walking on hills, temps in the upper 90’s, and humidity of about 90%.

And lots of walking at Summit.

I found myself experiencing pain deep in my calves and had a toe swollen and discolored. And a strange feeling of constriction in the middle of my chest.

Despite my physical ailments, I was having a great time. I settled in that first night and started adding to my list I’m keeping of one thousand gifts from God that I can be thankful for. Over the next four days I wrote down 103 different blessings.

I was feeling such thankfulness to God for getting me to Summit, where I was immersed in an atmosphere of pure gratitude and awe of all God has done in all of our lives, me and the 3,000+ others attending, that I couldn’t do anything but give praise.

Yes, my friends were concerned. We discussed whether I should get checked out at a hospital. The words pulmonary embolism were thought and spoken, as were deep vein thrombosis and concern about the chest feeling being one of those odd woman signs of a heart attack.

I prayed about it and really felt I was going to be ok. My breathing was not bad. I carried all my meds with me and used them as needed. I let the rest of our group go off without me and stayed put close to my workshops.

It made for a lot of time with God and it was all good.

On the ride home I got a call from my husband. He and two of our kids had been in a car accident in a parking lot. They were a little banged up from being t-boned, and the van had probably received a death blow.

So no stress for the last four hours of the drive!

When I got home we headed out to get some dinner.

And even on the way there I was starting to cough.

By the time our food came I had progressed to wheezing. And nausea. My husband and I left then to head home, where the attack continued and was worse than any other, adding in vomiting and sweating and shaking.

And when my husband asked if I needed to go to the emergency room, I shook my head no. Because I couldn’t imagine being able to make the effort to walk out to the car to drive there. So I toughed it out. Again.

The next morning, Sunday, I made it until the last of three points in our pastor’s sermon before the constriction in my chest and my shallow breathing made me sure that I was headed to the hospital after service.

I got the lecture about how people actually die during asthma attacks. How the pain in my legs and chest could be the things I’d already thought of.

And I got my first nebulizer treatment.

Truly sweet relief.

Lots of really good things happened that day and into the next, as I was admitted to the hospital and they ran several different tests.

I found out I have great veins in my legs. My heart is perfect. My lungs had no nodes or nodules that would be symptomatic of lung cancer, and no embolism.

The only thing wrong was that asthma had filled my lungs with thick, sticky mucus that I needed to be able to get rid of.

Just like I’d been saying for years.

So a course of steroids and antibiotics, the nebulizer sent home with me, and otherwise a clean bill of health.

I will tell you another time how that knowledge has affected me.

Three attacks total in July, and three more in September brought the total to nine over nine months, the most serious one I wrote about a couple weeks ago.

And then a breakthrough. While brainstorming with my asthma doctor we figured out the culprit. Aleve. Which I’d taken for pain before most of my worst attacks.

So now I’m hoping to only talk about asthma attacks in retrospect.

Because I never want to feel that constricted ever again.

Not Finished with Me Yet

03 Thursday Oct 2019

Posted by in Asthma, Childhood, Recovery journey, Tragedies

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Last Thursday I almost died.

Literally.

I’m still gathering all the pieces of why I didn’t, and I want to capture for you my perspective on what I hope is a one-time occurrence.

(For some background you could check out my post “Inspiration” from August 8, 2019.)

I’m really big on gaining knowledge and understanding. So when my asthma and allergies (still unnamed) started ramping up and causing attacks, I went into research mode. I made an appointment with a pulmonologist, but it was almost two months away. So I responded to a Facebook post about an asthma clinical trial, and found my asthma and allergy doctors instead.

Since then I’ve participated in two clinical trials designed to test generics of an effective asthma drug that makes it more affordable to do what should come naturally.

Breathe.

So in a two week time I had already had two serious asthma attacks: one after visiting a very musty used-book store, another that woke me up coughing and choking in the wee hours of the morning.

That second one got me thinking that I needed a better strategy of how to communicate that I was having trouble. I was alone in the family room to use my nebulizer for an albuterol treatment at 4am, taking my phone in case the distress didn’t let up. But my husband’s phone charges overnight in that room, so it would be down to my teenagers or 911 if I couldn’t walk and breathe at the same time to get help.

I freely admit I have control issues. Four and a half years of Celebrate Recovery have gotten me to the point where I can clearly see my problems, but I still don’t want to admit that I need help.

I don’t want to be powerless.

Seriously, I have been in places where I had no control over what was being done to me, and as a girl I decided I would do my best to control everything I could to make sure nothing bad happened to me again.

Yet Thursday night I had almost no control over what was happening to me.

Just the day before my third attack in two weeks, I met with my mentor, who I hadn’t seen for a month, and we talked about my need to have a written and easily communicated way to let my family know what I needed. So while working Thursday, my mind was on doing this, making a list from the most drastic to least invasive things to do for me or ask me about.

In my controlling mind I never wanted to entertain the idea of needing to call 911. That was for people who couldn’t analyze their own situation and be proactive about doing for themselves all they could.

Joke’s on me.

My niece, a firefighter and EMT, will give me a look next time I see her, but on my list was to ask her what to expect if I ever needed to call for emergency help. Because I like to work it out in my head before it ever happens.

Someone else was doing the working out, way better than I ever could.

Simple things like me feeling inspired to clean the garage. Okay, boss the teenagers around to get the garage cleaned. This happened a few weeks ago after moving Middle Son into college, when I was feeling the need to clear out the staging area in the house, and do the every-ten-year garage purging. It wasn’t completely cleared, but in organized piles at least.

I just want to park inside it this winter.

And getting stocked up on my regular asthma meds for when the current trial ended, something I would normally wait to spend the money on.

Way farther back, two and half years ago, Baby Girl had taken the classes and gotten certified for adult and infant CPR training. Though she had never had occasion to use it, she wanted the knowledge and confidence it gave her to work with young children in many areas of her life.

Let’s go farther, to 8-year old me, who was learning to use a riding mower and wanted to hear herself sing over the noise. And who was almost drowned by a neighbor boy in our pool, so I decided to learn to breathe deeply and be able to hold my breath for long periods calmly. Who loved to be onstage and belt out lines or songs, no cheating with microphones. Who toughed out labor every time with no help from drugs.

Just breathing deeply.

So when very suddenly Thursday evening I went from laughing over pictures of a cake I’d had delivered to Middle Son at school, to not feeling right, to labored breathing, sweating, feeling a little nauseated, all the pieces (much more than I could ever list) from my whole life’s story came together in some of the hardest words I’ve ever said.

I need help. Call an ambulance.

I guess I’m not shocked this didn’t register. After all, I’m the one who handles these kinds of things. Because nobody else can (Ha! My deluded mind talking again.)

But as I stumbled back into the chair by my nebulizer and with shaking hands broke open a vial and poured it in, I heard my husband making the call.

My ears quit working. I couldn’t make out all the words. I could see my younger daughter trying to catch my eye, saying something I couldn’t understand. I barked out a few one-word orders on the exhales, but I couldn’t stand not having the little push of air helping with my feeble inspirations.

I was hardly breathing. In only a couple of minutes.

And several more passing while the ambulance rushed from five miles straight up the road.

There was no white light at the end of a tunnel. My whole life didn’t “flash before my eyes”. I don’t think I was that close to death. But then again, what do I know? Why do I try to minimize the seriousness of those moments?

The reality is, if the EMT’s hadn’t gotten there quickly, I probably wouldn’t be writing this.

There was a lot of activity going on around me. Kids rushing out to make sure the garage was wide open and shoving those piles farther out of the way. Moving one of the cars so vehicles could pull close to the house. Clearing laundry baskets and shoes out of the floor and away from the door so there was clear access.

Me begging wordlessly for another vial of albuterol, frustrated at how long it took me to communicate what I needed. (Should have gotten that plan down in writing.)

And the overriding need to breathe.

Out is possible. It’s a relaxing, a release, as little as it may be it didn’t take much effort.

But inspiration…

I didn’t fully understand what I was talking about until Thursday night, when every thought, every bit of my will was focused on moving that magnificent muscle, my well-developed diaphragm, and feeling a pitifully small whiff of air making it’s way into my wheezing, mucus-filled, inflamed, closed-up lungs.

There were suddenly strangers, one kneeling beside my chair talking in my ear, others carrying things, holding things up, putting things on my face and in my veins, asking questions I couldn’t answer.

The voice by my ear telling me to hold just a quick second before breathing out, to get the medicine in.

I’m just as sure as I can be that it’s like Luke described it: “Suddenly there was with the angel a multitude of the heavenly host praising God…”

Not the people, don’t misunderstand me. There was a battle going on in that room that was far beyond the working of my labored lungs. There was an eternal question that was being answered:

Who is in control here?

It wasn’t me.

In fact, I fought some of the things they wanted to do. I couldn’t stand the mask (they said it was like a CPAP, so that’s out for me in the future), but I wanted the oxygen and aerosol drugs it was providing so they let me hold it as close as I could. When they couldn’t get a clear oxygen reading, I heard something like 84%, they talked about intubating, and I motioned the kids to leave the room for a bit. Thankfully they didn’t need to do that.

The hardest part was hearing them ask questions I knew the answers to, but couldn’t speak.

Yet within an hour and a half of getting to the hospital I was talking to everyone and walking out on my own two feet.

Two days later Baby Girl (who is 16 and my hero right now) shared what she had been trying to tell me. She had her CPR manual out and was preparing herself mentally to be able to break her mother’s ribs if I went unconscious before the ambulance arrived and she needed to keep my heart beating. Because she is the only one in the house trained to do that.

And in the emergency room I learned that the EMT who took charge of me is also a nurse at the hospital we wanted to go to. He knew exactly what they would do, and did all he could ahead to avoid any delays in my care.

My family rushed madly to gather things I might need if I were admitted, let our grown kids know the situation, reached out to our church, got there quickly to be with me, though I was pretty unaware of my surroundings for a while.

The next day I canceled work and appointments, let myself be chauffeured to get more meds and run necessary errands, and was able to go to Celebrate Recovery.

I got there late because I’d run off without my phone and had to turn back. Got caught by a train, and after arriving during worship had three people I needed to talk to before I paid attention to the song.

And then I looked up to the screen and I got my answer.

“From life’s first cry, til final breath, Jesus commands my destiny.”

Thank you, Jesus, that you have not yet let me reach my final breath!

Inspiration

08 Thursday Aug 2019

Posted by in Asthma

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Feeling inspiration is always great, but I want to share a little about the other meaning of the word: the drawing in of breath.

Most people take it for granted. There’s no thought required, unless you want to hold your breath or blow out birthday candles. Before I was diagnosed with asthma I never thought much about it.

As a kid I could run – and place with the fastest – in any kind of sprint or short race. But in the Presidential Fitness Challenge the 600-yard dash was my undoing. We ran five sides around a large square of grass, and I usually walked the last two or three with stitches in my sides, panting.

Though I never went to a doctor about it as a child, as an adult I developed a wheeze. Like a squeaky toy under a rocking chair. It actually took me months to finally get checked. I wanted to try all the home remedies I could before going to the doctor, but the diagnosis was exercise-induced asthma. Surprise.

The only effect on my life was occasionally using a rescue inhaler. Maybe five or ten times a year. Not hardly worth the expense of the medicine, and I’d often use it way past the expiration date since I used so little.

My personal experience with asthma attacks was one year on a women’s retreat when an older lady got to laughing too hard and had one. I was helpless. Between a few of us someone thought to run back to her room and get her inhaler, but the woman herself couldn’t speak to give us instructions. She had to concentrate so hard on moving air in and out that she couldn’t waste it on talking.

Inspiration – the drawing in of breath.

Not easy for her to do. In fact we were about to call 911 when she was finally able to pull in enough air to send it over her vocal cords and say she was feeling better.

I cannot tell you how many times over the years I’ve thought about that night. Her distress, my ignorance of what was happening to her, our panic as a group, the way that several voices at once can drown out the silence of the one who can’t speak.

We tend to listen to the voices we can hear. When they go silent, our own thoughts and sounds take over. But not always in a good way.

A couple years ago I suspected my symptoms were getting more complicated, causing muscle spasms between my ribs, and after trying several medications I decided to try an inhaled daily steroid to see if it helped.

I want to be clear about this. I decided this. I went to health care providers begging for help at figuring this out, but got no farther than, “What do you think you should do?” So I did a little googling and came up with a medicine to try, ran it by my very helpful and knowledgeable pharmacist, and picked the cheapest choice.

It seemed to work for about a year. But last fall things ramped up again, and I started into about eight months of frustration with all people medical, combined with constant sinus problems, no sense of smell or taste, increased wheezing and coughing, and the topper – asthma attacks.

My first one came on a Friday evening, and I didn’t know what was happening. I guess I expected it would be instant shortness of breath, but the reality was I started coughing up great quantities of mucus and it didn’t slow down.

I tried sipping water, used my rescue inhaler, and decided it would probably calm down by the time I got to Celebrate Recovery. But when I got there I sat in the car and texted people inside that I was having trouble breathing and was heading home. Two and a half hours later, I was finally able to breath normally.

When the second one happened I knew enough to not push myself. I sat still, I took the medicines I had, I forced myself to breath deliberately.

There is a kind of breathing that is so labored that your chest rises up from the middle from the effort of the drawing in of breath. The expiration is much easier, an afterthought of the extreme work of trying to force air into passages that are closing and filling with mucus.

I could feel this happening, I could point to it, but I couldn’t explain it verbally. So this second time my family was around and would say things like, “It sounds like you have a bad cold,” or “Do you need a drink to help clear your throat?”

Not helpful. I just have to say this. To be visibly struggling to draw in air, and have it dismissed as a sudden onset, already at maximum mucus production cold when I had NO SYMPTOMS five minutes earlier is frustrating beyond belief. I couldn’t even think of the reply I wanted to make, much less send the sounds out of my mouth. I was reduced to violently shaking my head no. And crying. Which only made it worse.

So several more have followed. I should have gone to the emergency room or an urgent care with a couple of them. I finally went to the ER the day after my worst one and was admitted. That’s a story for another day.

My point is that I understand being the person who is clueless as to what is happening to someone having an asthma attack. And now I understand being that person. Sitting in distress, whispering, “inhaler” with nobody hearing, feeling unable to stand and walk down the hall to get it myself.

And I’d like to say that what I need, what my friend all those years ago needed, was for someone to understand that I have no control over this, and that there are only a few things that will help if I can somehow tell you.

So ask: is your inhaler…? and ask all the logical places. Because I may only be able to move my head. Ask if I am able to get any air in. If I’m not, try every drug or device I have. If they don’t work, get me to someone who can help me. Don’t listen to my protests, because I’m basing it on what I see possible for me to do on my own, not on what I need.

If my lungs are closing, I’m not getting much oxygen to my brain. And it is showing in my stubbornness. And I’d much rather yell at you later, lungs full of air, for overreacting, then not be able to draw in one more breath.