30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: cough variant asthma, chronic hypertension, chronic anxiety, and PTSD (from Katie’s delivery)
2. I was diagnosed with it in the year: 2002 with the first three, the last was late 2008
3. But I had symptoms since: childhood for the asthma. Since college for the anxiety
4. The biggest adjustment I’ve had to make is: shifting from teaching in person to teaching online.
5. Most people assume: that I can do anything and everything because Jerome Bettis played football and Jackie Joyner-Kersee was an amazing athlete.
6. The hardest part about mornings are: remembering to take my medications with the hustle of children and dogs.
7. My favorite medical TV show is: Diagnosis, Murder.
8. A gadget I couldn’t live without is: my nebulizer
9. The hardest part about nights are: getting to sleep. I’m always afraid of waking up in the throes of an asthma attack. It’s the scariest feeling.
10. Each day I take _16_ as needed pills & vitamins. (No comments, please) plus two puffs of advair and albuterol as needed.
11. Regarding alternative treatments I: have not really found any that are viable for me.
12. If I had to choose between an invisible illness or visible I would choose: I don’t think I would change for something more visible. I just wish I could make people understand that there are things you just shouldn’t do around me
13. Regarding working and career: I miss the fact that I don’t see my students in person. I miss teaching books that I love. I miss going to conferences. I haven’t been since Colorado Springs. I spent the whole thing wandering around wheezing.
14. People would be surprised to know: how much I hate leaving my house and being exposed to triggers. I have my asthma under good control as long as I don’t have a lot of exposure.
15. The hardest thing to accept about my new reality has been: how hard it is to do things that I consider normal. I can’t even weed my garden because it stirs up too much pollen and makes it impossibly hard to breathe.
16. Something I never thought I could do with my illness that I did was: travel to a school graduation last year. The last time I did extended travel, I got really sick, so I was worried that this, with all the people in enclosed spaces, was going to do a lot of damage, but it didn’t.
17. The commercials about my illness: make me sad. I can’t do anything and everything and the commercials make it hard for people to understand that.
18. Something I really miss doing since I was diagnosed is: being spontaneous. Everything has to be planned and organized. I have to remember medication whenever I go anywhere.
19. It was really hard to have to give up: being places like church. The enclosed space, lots of people thing is like a breeding ground for illness for me.
20. A new hobby I have taken up since my diagnosis is: I started knitting. It helps me calm down and keep track of my breathing. Particularly good for the anxiety portion of the program.
21. If I could have one day of feeling normal again I would: go to the movies. I haven’t been able to sit in a movie theatre in years. I start wheezing and I have to leave.
22. My illness has taught me: that patience is important. I might not be having a good breathing day today, but tomorrow might be better. I might not be be so stressed or so easily triggered.
23. Want to know a secret? One thing people say that gets under my skin is: You don’t really have asthma. Or, my other favorite, you use asthma as an excuse not to do things.
24. But I love it when people: are considerate and remember that things like perfume trigger me.
25. My favorite motto, scripture, quote that gets me through tough times is: Just keep swimming. (Dory from Finding Nemo.
26. When someone is diagnosed I’d like to tell them: It’s not the end of the world, but it will change your world and the way that you view it.
27. Something that has surprised me about living with an illness is: how much my perspective changed. I always thought that I was good at empathy, but I’ve discovered I wasn’t nearly as good at it as I thought I was.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring things for the baby. After the delivery, I couldn’t do anything and the people who helped in that first two week period really made things so much better. They honestly have no idea how much.
29. I’m involved with Invisible Illness Week because: I don’t look sick when you look at me, but my body knows differently. I want people to know that you just don’t know who might have what by looking at them.
30. The fact that you read this list makes me feel: like you care. Thanks for taking the time :).

We Need Health Care Reform

This is not a political issue. This is not a party issue. This is a human issue. Every one of us, insured or uninsured is one major illness away from a catastrophe. No matter how well insured you think you are or how well off you think you are, one major illness could wipe you out. No person should have to go bankrupt in order to preserve his or her life.

I’ve stayed quiet on this for as long as I think is rational, but I can’t stay quiet any longer. Consider this. My insurance company covered the birth of our daughter. They didn’t balk at the extra expenses of more exams because the pregnancy was high risk, but they did refuse to cover the high risk specialist, though they did cover the ultrasounds that he did every month (go figure that one out; we’ll pay for the test, but not for the guy who reads it). They covered the immediate birth of my daughter, no sweat. They attempted to argue every single charge related to my near-fatal complications.

They refused to pay for the second anesthesia on the 17th because it wasn’t “medically necessary” for the purposes of giving birth. It was medically necessary, however, to save my life. That, apparently, was secondary. They argued about the number of units of blood. They argued about the amount of fluid I was given. They argued with the tests run to make sure my kidneys were functioning (a common complication after the surgery I had), and on, and on, and on.

This same insurance company feels I should stop taking the asthma drug that controls my asthma except during extreme situations, and take something that is “similar” — it’s not the same pair of drugs and it doesn’t work the same, and my doctor doesn’t believe we’ll have the same results, but my insurance company argues (and sends me letters monthly) suggesting that it is in my best interests to switch. They believe that I should have no more than 4 migraines in a month and so limit my medication on that front to four pills.

I get that people don’t want the government controlling their health care, but, honestly, your doctor isn’t controlling it now. Your insurance company is and they don’t care about you, your health, or what’s best for you. They care about what’s best for their bottom lines. And that’s no way to care for patients.

I have incredibly weird reactions to drugs. For example, I am severely allergic to Naproxen. Like, throat swelling, can’t breathe, nearly died, allergic. My insurance company doesn’t care about that and frequently tries to insist that the medication that I can take for migraines should be substituted with one that contained Naproxen. So, I pay more in order to stay alive because the only drug I can take is not on their preferred list.

Or, if you want another example, take my daughter. While her life is not threatened by her condition, her eyesight and normal development is. Because of all the screwing around on the part of the insurance company, we are now assured this surgery won’t take place before October 1. Because it won’t, we are now going to be out $4000 plus 20% rather than $3000 plus 20%. It’s going to be hard to absorb that hit, but we can. And the worst of it is that they reset the policy on October 1, but the calculations of our out of pocket expenses gets reset on January 1. It works to their benefit, not ours. This is the result of letting private industry regulate our health care.

Or, you want to argue quality of care? Okay, I can do that, too. My daughter had an outstanding surgeon. One we felt extremely comfortable with and were really happy with having do the surgery. But, because our insurance company won’t cover her, we can’t afford to use her. And remember, even though I needed I high risk specialist for both of my pregnancies, neither insurance company covered that cost, so we had to. We’re fortunate that we could afford to do that. What if we couldn’t afford it? Then what would have happened?

Add to that what I’m seeing with my mother- and father-in-law, both of whom have been hospitalized for nearly a month. A conservative estimate of my mother-in-law’s care? $300,000 to $1 million. My father-in-law’s care will likely be somewhere in the neighborhood of $200,000. They have no insurance and no money. We certainly can’t afford to pay for that (nor are we legally responsible to pay it). So, who pays it? I don’t know. I do know that they will end up bankrupt. I know that my father-in-law, who is a World War II veteran was told at the VA that there’s no help for him there at all.

Finally, P and I lived uninsured for the first five years of our marriage. It was extremely scary and not something I would ever want to do again. But insurance doesn’t fix the fear or save us because insurance isn’t actually there to benefit us. They bet on us. If we’re well, we’re a good risk, but if you get ill or develop a chronic illness, health insurance works against you in every way that it can.

We need a system that protects the people of this country and puts the health and welfare of the people above the cost. We need our doctors to be doctors and not be dictated to by people who read spreadsheets, but who have never set foot in a medical school class. We need a system that is not broken and that allows everyone to receive care pre-existing condition or not without fear of losing their homes, hopes, and dreams.

We need health care reform and we need it now.

When Asthma Doesn’t Seem Like Asthma

Quick. When you think of someone with asthma what do you picture? What do you hear?

For most people the answer is wheezing. They see someone who always seems to struggle for air a bit or whose breathing is audible a lot of the time. My aunt had that kind of asthma. It was scary stuff. She could go from feeling fine to not feeling fine quickly and listening to her struggle to breathe was painful and when you were familiar with her triggers, you took great pains not to trigger an attack.

But my aunt’s asthma is more complicated for me because, it turns out, that I, too, have asthma, even though I’ve never sounded the way she did. I knew about exercise induced asthma and I knew that wasn’t what I had. Exercise and I have always been on somewhat unfamiliar terms (my current attempt at a 30 day challenge, not withstanding). But I always knew I struggled sometimes to breathe. I would start coughing and I couldn’t stop and I couldn’t seem to catch my breath. It was uncomfortable, but I didn’t think it was life threatening. Life limiting maybe, but not life threatening.

And then, almost ten years ago, it wasn’t so simple anymore. I got sick. Very, very sick. My poor doctor was taxed almost beyond his abilities trying to figure out what was wrong with me. He ran tests; he thought he had an answer. Off to a specialist I would go and they would determine that what he thought wasn’t it. He thought I had polyps in my nose. There’s family history and it seemed logical. Except, upon much closer examination by an ENT, it was determined that I absolutely didn’t. More blood tests and he found RSV. Yeah, that RSV. The one that kills babies and old people. That one.

I was so sick that I ended up taking two weeks leave from teaching — in the middle of a semester. Let me tell you how often that’s done. Yeah, very rarely. But, with his note and sick leave built up, I was able to do it without a loss of income. And still, I was sick afterward. It took another three months of me not getting better and him struggling to figure out the problem before the magic day happened.

I started coughing in the office. The spontaneous, racking cough that would get where I honestly thought I would die before I would stop coughing. The cough where I couldn’t catch my breath, couldn’t speak, couldn’t do anything but cough with tears streaming down my face.

He had been on his way to see another patient when he heard me. He burst into the room, and this was real bursting because I hadn’t even seen the nurse yet, and said, I know what it is.

I’m looking at him like he’s lost his mind and he hands me a rescue inhaler and tells me to breathe squeeze and breathe in. I did. He told me to do it again. I did.

And suddenly, I could breathe. It was like a miracle. It was Albuterol.

He called it non-wheezing asthma and he knew how to treat it. I take two different drugs, carry rescue inhalers on my person at all times, and have a nebulizer in my bedroom (and in my carry on luggage when I go on trips). You’d think it would be a relief to know what it is and how we can manage it, and in many, many ways it is. Now I can explain why some things set me off and make me cough and uncomfortable, and yeah. But, because it doesn’t sound like the asthma my family has known, it’s been hard, at times, for them to accept that it is, in fact, asthma.

At one time, I was advised that I should get full-fledged asthma testing because “it’s not really asthma unless you have those tests.” My doctors have a different point of view. I would not respond so well to the drugs that I take if I didn’t have asthma — in other words, they would have no appreciable affect on my coughing and on my struggles to breathe.

These days non-wheezing asthma has a new name: cough variant asthma. What’s particularly interesting, if you read around on it, is that it is difficult to diagnose because the usual tests for asthma don’t work. In fact, there are really only two ways to diagnose it 1) be lucky enough to have an attack in the doctor’s office, or 2) inhale irritants to trigger an attack in the office. In other words, have an attack to prove that’s what’s going on. So, I guess I got lucky in that I had an attack in the office and my doctor knew what he was hearing.

The really tough part is that because I have it, both of my kids have an increased chance of developing it. The first pediatrician we had didn’t think it was an issue, but our current one asks me every time we bring Ben in if I’ve seen any signs or anything that worries me. Because it’s difficult to diagnose and it does occur in children, the best way to catch it is for parents to be aware that it exists and that it doesn’t behave like typical asthma. So, what do I watch for:

1) Coughing. A dry cough that is completely unproductive. It can sound a bit like barking and a bit ragged. It can also seem uncontrollable, like the kid literally can’t stop coughing. Sometimes the kid may say that their ribs hurt from coughing or talk about a little tickle in the back of his/her throat that seems to be making them cough.

2) Specific things that seem to trigger a cough. My triggers are grass, pollen, cigarette smoke, dust, and perfume. So yeah, I don’t get out much.

Of course, this means when Ben has an unexplained coughing fit, I get a little nervous, but I don’t see the uncontrollable aspect that I associate with my asthma. He seems to be able to get it under control and he doesn’t seem to get breathless. I guess that means so far, so good.

Excuse me, I have to go find an inhaler — the dogs just came in and I’m having a “bad breathing” day.