Diagnosis: Prologue

When I look back on my childhood it feels like I was always sick for some reason. I either had a cough or a cold or I was sneezing or I felt nauseous (I would say it was in my chest and now I’ve learned that’s acid reflux) or something. There were also times I didn’t understand what was going on with me but I knew I wasn’t feeling well. I felt “weird” as I would say and I still say sometimes now.

My first memory of “not feeling good” is probably when I was six years old. My mother says she remembers me having sick times before that but I think that’s when I started really noticing how I was feeling and how much it was affecting me. I believe I had something like 23 times of “feeling sick” in first grade. I know I missed a lot of school. I feel very fortunate that my school didn’t hold me back a grade for missing so much of it. I couldn’t help it. I would get a cold (probably more allergies than anything but we didn’t know it at the time) and then it would ALWAYS travel to my lungs and I’d start the coughing and once that started I was in for it. The cough was like a “bark cough” and I still call it that now when it happens (much more rare thanks to knowledge and medication). Lots of times there was wheezing and feeling like I just couldn’t get enough air. It really felt like there was a monster in there trying to come out. I’d wake up in the middle of the night with horrible coughs and a lot of times I couldn’t breathe through my nose which made it even worse. I was miserable.

Numerous times my parents would get me up in the middle of the night and we’d go to the Emergency Room because my cough was so bad. Numerous times we were sent home by doctors who told us there was nothing they could do. Not once did they mention that I might have asthma. Not once did anyone say that I had a sinus infection. Not once did they say there was anything they could for me except maybe give me cough medicine to knock me out…I think. I couldn’t breathe without coughing. I know they heard my wheezing. I know they heard my coughing. There was no way to miss it. I’d be in school and in public coughing like crazy and the looks I would get. Everyone thought they would catch something and that I was infectious. I couldn’t be quiet. They would say to leave a drink by my bed. They would say to give me a warm drink, that might help. They would say to give me whiskey (probably why I don’t like alcohol much at all) and I’m sure it was just to knock me out. I don’t think anyone mentioned an inhaler to at least give me some relief until I was 16. It was awful for all of us. I know my parents did the best they could for me. They tried really hard to get answers so I could have some relief. So I just kept blowing my nose and sneezing and coughing and suffering and it felt like a really vicious cycle of sickness.

It wasn’t until I was 16 (and now that I’m thinking about it probably a few years before that) when I was playing field hockey that a doctor said that perhaps I might have exercise-induced asthma. I can remember never feeling like I had enough air to do anything. So imagine running around and trying to play and starting to wheeze and run out of air. For the longest time I thought that was normal. No doctor that I could remember up until then had paid much attention and would send me away as if it was just the way it was. I just didn’t understand how the other kids/players could handle doing anything. It really was a struggle at times. I somehow just kept pushing through it. I had to deal right?

I can distinctly remember asking this doctor at 16 if me being short of breath was normal. He sat back in his chair and looked at me in deep thought. It really was monumental to be paid attention to at all about my breathing at this point. He didn’t discount what I was saying and he said he thought I might have exercise-induced asthma and to try to take a certain inhaler. I don’t even remember what it was anymore. I was blown away. I think that started my journey of being blown away about having any answers. You mean, there really is something wrong. I’m not totally out of my mind. (Well, about this anyway.). It was scary and such a relief at the same time.

So back in field hockey I’d take my inhaler when needed. My coach knew and understood and you know what? Life got a little bit easier. I wasn’t a good player really but at least I could participate and I wasn’t suffering as much. Maybe this doctor had something. I mean, my grandmother had asthma. Why wouldn’t I? But you see I only had exercise-induced asthma I thought. Using my inhaler when I exercised didn’t stop me from getting sick and coughing and blowing my nose and still wheezing.

When I was 18 I met a doctor who listened intently to what was going on with me. She pulled out a pamphlet on asthma and had my mother and I read it. I was in awe. It was describing me. It talked about the coughing and the wheezing and the sneezing and the full sinuses. I couldn’t believe it. There was an answer. That’s when I started my medical journey thinking I had asthma and starting an inhaler regimen. Not long after that I saw an allergist (hmm, wondering how much of one he really was because he didn’t address my allergies but anyway) who listened even more to me and did a breathing test that I barely passed. I forget what it was called. Turns out I was only breathing at 30% lung capacity. He couldn’t understand how I was breathing at all and functioning. He also looked in my nose (first doctor to do that I believe) and wondered how on earth I was breathing through my nose at all. So he started me on a major regimen of nasal sprays and more inhalers. I felt so much more relief. It was unbelievable.

But see that didn’t explain everything. It always felt like there was always something missing. What about the rest of the reasons I didn’t feel well? What about those times I still felt “weird” as I talked about in the beginning. I can’t explain them. I didn’t (and sometimes still don’t but think it’s connected with the lupus–diagnosed in August 2010 so how many years later?) understand them or know how to describe them or that it was abnormal. It was just the way it was. I could feel better? I also had those weird nauseous feelings in my chest as I talked about too and that didn’t help anything. I didn’t know that’s what acid reflux felt like. AND my cough and sinus issues were still not really resolved. To really confuse the story, there is still a big discrepancy between all of my doctors past and present (and heck probably future) about whether I have had asthma, if I have the kind that comes and goes (apparently it can do that–I had no idea), if I have it now (no inhaler since I think December 2010) or if it was JUST sinus issues with post nasal drip being the major culprit all of these years (for a much later Blog…) or what it is.

This is how I lived until I was 25 and the MS symptoms started. I’m still convinced I was feeling lupus at that point too but it hadn’t been clearly detected yet. I believe I have been feeling some sort of lupus or connective tissue disorder/disease symptoms since I was at least 6 years old.

Writing all of this really helps me see how far back my resentments go about not feeling well. It helps me understand that my body needs lots of love and it will take as long as it needs to to get better now that so many of the puzzle pieces are falling into place. I can also see how much trust I lost in any medical professionals way before trying to get an MS diagnosis or whatever it was going to be in 2002. I knew that I had to ask questions and that blowing me off didn’t help anything. The past experience told me to keep on it, that something wasn’t right. Tingling on the bottom of my feet wasn’t normal. Really. Plus, I didn’t have an awful childhood and wasn’t completely miserable. I was still a kid who did fun things. It was just really hard physically quite a bit. Now I know why I’m so tired of being sick and tired.

OK. I feel like I can get on with the rest of the Diagnosis story. I just had to relive all of that a bit first.