How Asthma Changed My Awareness

I spent nearly a decade working for pediatric therapists, and because of this I was always surrounded by children.  Not once did I ever get the flu!  Ear infections?  Sure.  Strep?  Of course.  But I've always been big on getting my annual vaccine, and I chalked my "flu free zone" to just that: vaccines rock.

I've been in my new corporate job for just under two years.  Since I've been here I've had an ear infection, bronchitis, and the flu, twice!  Turns out adults are just as yucky as kids!

About a year into my new position I was diagnosed with asthma.  This was a whole new ballgame for me: if there's one thing that's always worked well, it's my lungs.  Well, I usually get an upper respiratory infection a year, but breathing, in general, always worked.  I may have a decent assortment of diagnoses (fibromyalgia, gastroparesis, interstitial cystitis) but hey, breathing?  This has been completely off my radar until asthma came along.

Acceptance and Raging Jealousy with Fibromyalgia and Chronic Illness

Just because I've long accepted my chronic illnesses doesn't mean I don't periodically wish for more. 

I've accepted who I am and feel well adjusted to my reality.  My limitations.  The fact that I can, in theory, do whatever I want but may be in great pain while doing it, pay for it greatly later, or completely peter out while in the middle of it.  I am still a loving, kind person who volunteers, helps friends, who is optimistic in light of many personal roadblocks.

But I'd be lying if I didn't voice the other side of it.  The feelings of raging jealousy at those who can do the things I'd love to do.

What's in a Name? The Power in Naming Your Health Condition

I once read that it was helpful to be able to specifically yell at your illness or health problem.  Please, don't ask me where I read this, I have no idea.   But the point of the article was that there was power in naming whatever "it" was, both in terms of diagnosis but also in having something specific to direct your frustrations towards.  That you'd have a name to literally yell at.

At the time I only had fibromyalgia - now, that's quite the fancy name for this not so specific problem, but it was also a bit a mouthful.  And what would I be even yelling at?  My back pain?  My brain for not letting me fall asleep?  It felt...not quite right and lacking specificity.

The 18 Thoughts for 18 Years of Living with Chronic Illiness/Pain

When you live with chronic illness and/or chronic pain, you learn a lot about yourself and your body.  You learn about the limits of humanity, of your own finances, and your emotional limits.  You learn about the difference between thrive and survive.  This isn't a finite list, and I'm sure I could come with way more than 18 lessons, but here are the ones that stuck out to me the most in the moment:

1. I'm really in tune with my body.  I can tell when I'm about to have a flare hours or days before it starts. With just one bite I can tell that a particular food will upset my gastroparesis.  I just know.
2. I have no idea what my body is up to.  My body does things without consulting me or giving me decent notice.  Flares start with no reason or indication.  Is that an interstitial cystitis flare or a UTI?  Why did I not sleep?  Why did that food upset my GP?  Friends and family ask, why?  Absolutely no idea.  Because it's Tuesday.  Because Mars is in retrograde. 

Why I'm Not Defined by My Chronic Illness

Until quite recently, I have avoided thinking too much about chronic illness and it's impact on my life.  I didn't want to become one of those people.  You know, those people whose chronic illness or disability becomes the soul of their identity. I thought it was either/or.  I didn't understand that identity could be a spectrum that is continually fluid.

This process of not only thinking about my identity and chronic illness, but documenting my thoughts in a cohesive way has been incredibly therapeutic.  I reflect, write, re-write.  I have drafts of thoughts, feelings, and events that I may never share because I can't figure out how to coherently express it.  No matter what, it's helped me process through a myriad of emotions that have been long lingering under the surface.  I feel like I'm letting parts of me free.

Questioning Pain

We learn at an early age that pain means something is wrong.  That pain is indicative of an infection, an injury, or an illness.  That it's something that is fixable with an aspirin, antibiotic, a bandage, a doctor's visit, or a cast.  That the doctor could feel the heat radiating from the sprain, see the muscle tear on the MRI, the fracture on the X-ray, or diagnose painful strep throat from the swab.  We're told that it hurts now, but it will feel better.

My Body is a Wonderland

When I was diagnosed with gastroparesis, my gastroenterologist told me that I may never get better and recommended that I take a medication to help my stomach function.  The first recommendation was an antibiotic with every meal.  I didn’t want to do this, so she then recommended taking Reglan, a medication that hospitalized my maternal grandmother for weeks.  She and I have had parallel reactions to several medications, so I was wary of trying it.  Her last try was a non FDA approved medication that would have to be made a compound pharmacy, and not covered by insurance.  Now, I know the FDA is far from perfect, and that there are a lot of medications that are not approved here but are in Europe, but my fear was what if this drug worked?  I’d then be stuck paying completely out of pocket for who knows how long...and so I declined again.   I told her I read that it could be controlled by diet, and I’d like to try that first.  After this appointment I called the nurse, not sure if I was supposed to make a follow-up appointment.  Apparently, since I refused medications, the doctor didn’t need to see me again.

Am I in Control of My Body?

Compared to many, my chronic health issues are almost embarrassingly in check. I take my meds. I try to keep to a sleep schedule. I’m not regularly in substantial amounts of pain, and in fact have good days where pain isn’t a factor at all. I’m able to hold a well paid full time job with great benefits.  I miss maybe one day a year due to actual chronic illness related concerns. I know, compared to many, I am very, very lucky. 

Dating, Disclosure, and the ‘Me’ness of Being Me

I have a hard time with dating and living with chronic illness, especially when it comes to disclosure. When do I disclose? Does my potential dating partner deserve to know prior to making a commitment? Do I owe disclosure to them? Do I owe it to myself? I end up waffling around, sometimes disclosing prior the first meeting, and sometimes after several weeks of dating. Sometimes I end up having to disclose before I would like, but I find it hard to have a flare and not explain it.

Because these names, these chronic illnesses of mine, they are a part of me. They don’t define me.