Tuesday, December 24, 2013


: causing harm in a way that is gradual or not easily noticed
: of a disease :  developing so gradually as to be well established before becoming apparent
  1. Most people with this insidious disease have no idea that they are infected.
So I’ve been thinking about how to write about what has happened to me over the course of the last 6+ weeks and all that comes to mind is the word “insidious”. Every time I met with a new doctor and answered all the questions they were asking about my symptoms - when they began, what did I notice first, did I have this or did I have that? All I can come up with is this was the most insidious attack because I had no warning. There were no early warning signs; no hints I was coming down with anything; no clues given to me to let me think something needed attention. I had no idea I was sick until I was so sick I needed to be admitted to the hospital. At least that’s how it seems to me.

I’m not exactly an unobservant patient. I think, especially since I’ve had to learn to live with IC, that I’m very aware of my body and what is going on with it. I think this is true of most chronically ill people. We have to learn to listen to our bodies and be on the lookout for flare ups or problems with our condition that need attention. 

But then there are things that are so small, that start out so subtle that we think it’s no big deal. So for me, when this long journey began, one day I was - for me - fine. My IC issues were ever present of course. But, I didn’t notice anything new starting to attack my body. Certainly, nothing that seemed significant. I didn’t feel “sick”. I didn’t have a cold; no sinus issues, no temperature, no reason to stop and truly take notice.

Insidious. When it’s staring the doctors in the face (the symptoms that is) and they can hear me wheezing, see me coughing so hard, long and intensely that I double over in agony because I've torn several intercostals, cannot breathe and require oxygen they know something is seriously wrong. Yet every single test kept coming back negative. That’s insidious. It’s there, they know I am sick and seriously so. But it’s not giving them a clear picture of what it is that’s attacking my body. 

It took time, but we finally got an answer to what the insidious disease that I am battling is: Obstructive Lung Disease/Adult Onset Asthma. We have no idea what triggered it and maybe we never will. That's OK; I'm just glad to have answers.

I don't know about you, but of course I've heard of Asthma. I know people with Asthma. They all seem to manage their condition well. I assumed once we knew what it was, I would start treatment and would begin to feel better right away. That one puff on my inhaler would bring instant relief. That's what the commercials would have you believe. It's easy to treat. It's not that serious. It's "only" Asthma. I should know better. How often do we, as IC patients, talk about people not understanding what we're dealing with. How often do we complain that people do not take us seriously? That if they don't have it, they don't get it. I will confess to being more ignorant about this than I care to admit.

But here's the thing: Asthma is a lifelong disease that causes wheezing, breathlessness, chest tightness, and coughing. It can limit a person’s quality of life. It has changed my life dramatically - and forever.

The doctor didn't come into my hospital room and nonchalantly just say "you have Asthma; here's your inhaler; you can go home." He sat down for a very serious conversation and said "you have Obstructive Lung Disease". He explained that means it could be one of several different types and what those are: among them COPD, Emphysema and Asthma. He told me that even though the Chest CT Scan diagnosis was COPD, I have no risk factors to explain getting that, so he believed I have Adult Onset Asthma. We had a long conversation about how to treat this very serious attack and then how to move forward once it was under control.

But first we have to get it under control. We're still working on that. And I am making improvements. Inches at a time. Inches. Last Monday I saw the Pulmonologist again, one week after being discharged from the hospital. He is fantastic. They repeated the Pulmonary Function Test in his office and it proves Obstructive Lung Disease. He said my situation is like a huge forest fire and they are having more trouble than usual putting the fire out so that they can get me to a "maintenance" place. It will probably take longer than I would like. My doctor said I had gotten so bad that it will take that much longer to get it under control. The big mystery is WHY; Adult Onset Asthma usually has some trigger and we cannot figure out a trigger. So again - insidious. It's just very strange and he admits the WHY is something we may never know. But now we know WHAT and can treat it. He takes this very seriously. I have a bunch of meds to take and a plan in place for now, but this is another disease that I will have to manage for the rest of my life. Right now, getting the "fire" put out and just being able to treat it with maintenance meds is our goal. I see him again next week.

I have a long road ahead of me.  The coughing has improved a lot but it’s not gone yet and when I do cough, I just re-injure the torn intercostals and that is agony. Even after we get this under control (please let’s get this under control), I will have a lot of work to do toward regaining my strength and learning to live with yet another chronic, incurable disease and more medications. This will require a coordinated effort between my Primary Care, my new Pulmonologist, my Cardiologist (all the treatments for this have exacerbated my heart issue), my Neurologist and my IC doctor. Everyone needs to be on the same page!

I will have lots to talk about in therapy and am looking forward to seeing my psychologist in the new year to begin working on how to deal with all of this. I am not embarrassed to admit this has been a rough go.

We take so much for granted like breathing. Not being able to breathe for 6 weeks is a long time; it's scary and it's painful. 

I began this with one word: Insidious. This was a sneak attack that I was not prepared for. It set us back further than we would have liked and on the defensive trying to come from behind to try to get things under control. We are inching our way toward a better place. I was so unprepared. 

This is a story without an ending. It is really the beginning of another new reality for me. There is so much ahead of me, but I am blessed with a loving and supportive family who is going above and beyond to help and support me. I do not take it for granted. I am blessed and love them all so much. 

I want to thank everyone for the messages of support and encouragement sent to me. Thank you all for letting me know you are thinking of me and that you care. Thank You all!

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