how's it going? long medical things post.

I keep it happy on here, I really do.

Honestly, my memory isn't the best, so when I read over my LJ, I like seeing all the happy and pretty moments.
But I've been struggling with some health issues lately and threshing some stuff out, and I felt like talking about it a bit. So here is more than you ever wanted to know.



I have a rare disease called RRP, which I was diagnosed with at age 2. Basically, HPV growths grow on my vocal cords, and periodically block my airway/mess up my voice, and have to be removed. I've grown up "walking it off" and not talking about it much, because, when you have something that is out of ordinary and makes you sound weird, you learn to hide it at a young age, and try to fit in. You don't talk ponderously about health problems and sound like a complainer. You don't talk about dealing endlessly with insurance companies and doctors' offices and surgeries and anesthesia and scopes. You don't talk about how, when there's regrowth or a bad cold, the extra effort to speak and push out air is frustrating and exhausting. You nod and shrug with a smile when someone suggests honey and lemon, or asks if you have a cold, or tells you that you have a Joan Rivers voice. You try to talk and sing like a normal person. Teaching, doing outdoor theater, learning and attempting to speak a tonal language? Well, that's just pure bonus thickheadedness.


It can make an extrovert into an introvert. (I can explain this more later, I guess). It can make you stick your head in the sand and ignore medical problems, hoping they go away so that you don't have to deal, until they become bigger. It can make you go the other way to Hypochrondriac City, living with paranoia that things are getting worse and that tombstone shadow is lurking, lurking.

Since I've had children, I've tried to *not* ignore problems and be too cavalier about things (like my life, ha!), because the stakes are too high. I've joined an RRP Support Group online. I've read more about my actual disease (crazy, I know). And I've been extra watchful, because the most recent findings (and really, there aren't many, because no one cares too much about a rare disease, at least until it goes cancerous), point to hormones affecting the growth rate of the paps, (sometimes with distinct ebbs and flows at different ages of life), and that it is rather caused by an autoimmune deficiency, rather than just purely a transmission from an HPV infected mother to baby at birth (otherwise, there would be far, far more cases, and adult-onset points to autoimmune factors as well). I know, this is so fascinating. Old people, self-absorbed people, talk about medical conditions and diseases as if anyone cares. Anyway, I've been pretty fortunate, post-intense-childhood, and averaged maybe a surgery every five years or so, and my voice has surprisingly held up through some crazy, crazy abuse.

But the last six months it's gotten worse and worse. Like, the worst since I can remember accurately. Of course, I immediately went to my Otolaryngologist at NYU Langone, my doc that I've been seeing for 25 years. We both peered at the scope and it didn't look bad at all in there. I was so jubilant, thinking that I could defer a procedure for a while longer after all, that I didn't discuss with my doc *why* my voice was getting worse and worse then. And that just started me down the rabbit hole.

(What I presume was) the stress of the upcoming oto visit (and what I thought would be impending expensive surgery), about a week or two before my NYU doc appointment, made me think that I was having heart problems. I had chest tightness, weird, weird chest tightness. I got an EKG done at my local GP, because I thought I was having some kind of problem, but the EKG was fine, so I moved on.

In the spring, with a worsening voice, I visited an endocrinologist. I thought that I would get my thyroid checked, since older RRP females have a high likelihood of it crapping out as they age, and I had some other wonderful symptoms. I also thought that my voice might be getting crummier because of estrogen decline (this happens and is another sign of hypothyroid, etc; think of a quavering elderly lady's voice). But my levels came back within normal ranges, (not optimal, but not wacky enough for synthetic hormones; which, as someone who can trigger booming pap regrowth with hormonal changes, I felt *slightly* leery about taking synthetic hormones anyway). ((I now think that aging/hormone changes have a *lot* to do, this time, with my voice's decline, but perhaps mixed with some other factors)). So, I added some vitamin supplements to my (already pretty healthy organic) diet, and moved on.

In June, I noticed a sharp pain in my left shoulderblade, and some shortness of breath, and again, the increasing voice difficulty. I thought I was just working out too hard (ha HA!) or carrying my son too much with that arm. I laid off for a few weeks and slacked on the exercise, but the feeling was still there, and I tried to ignore it, but then it felt slightly more stabby when I took deep breaths. So then I went a bit nutso. I became instantly concerned that my RRP had gone pulmonary (which happens, but only in 10% of cases), and that it had progressed into lung cancer (pulmonary RRP can be, along with early lung cancer, asymtomatic, suckers!). A stabbing left shoulderblade pain comes up as a symptom of lung cancer, as well as voice hoarseness.
I moved pretty fast as soon as I thought this might be a possibility, actually. I looked into getting a lung scan, but (even if you have a preexisting, precancerous rare disease), unless you are over 55 and a smoker, insurance won't just let you go in for a lung scan. It's easy as pie if you are over 55 and a smoker, though. Tons of programs to shepherd you through. I called my Oto, but his office, quite honestly, is TERRIBLE, and he never got back to me. He often goes away during the summer on charity medical retreats. I thought he could score me a pulmonologist referral or hook me up, so that I could get checked out more easily. No dice. I called a host of local pulmonology offices in my area, (so that I would not have to go into NYC with a babysitter and all that $ and hassle), but they were booked for the NEXT THREE MONTHS. I thought maybe a local Medi-Merge clinic might be able to order an Xray or CT scan, but then who was going to read it? The medtech there? Should I trust that??

So now I was starting to sweat it out, and think about it all the time. I decided that if I *did* have cancer, I needed to know, like, right away, and not passively wait like a chump. I went in the evening to my local ER. I knew that they would be able to score me an instant referral to a pulmonologist, and I could 'skip the line', as it were. To this date, I have not yet received my ER bill, and I think of it with absolute dread every day.

Did I see an actual doc in the ER? Of course not. I saw a PA. But whatever. He and a nurse listened, assured me that I wasn't crazy to get checked out (nice, that), and also suggested that it might be a PE in my lung (pulmonary embolism), since I have a blood condition and am prone to clots. Golly, this hadn't occurred to me (hey, I leap right to cancer!), and I actually felt really relieved, thinking that this might be the problem. Simple!! They did a D-dimer (a test to see if your blood is all disastrously clotty), and a chest Xray. The PA didn't feel comfortable jumping right to a CT scan, because he was worried about excess radiation (and he's right; radiation could also cause my RRP to go all squamous-crazy and go cancerous, woot!) One ER chest x-ray later, and we ruled out a PE (which is good, I guess, because going on long (or lifelong) Coumadin or Xarelto or somesuch would also bite). He said that the xray was clear, so nothing major, and gave me the pulmonologist referral so that I could get an appointment the following week. All good things, but I admit that I cried in my car for a while, feeling like a fool, for ever going to an ER and thrusting that expense on my family, and for freaking out over ostensibly nothing, hysterical female.

The pulmonologist, although he had zero experience with RRP, was very accommodating. He said that anything major would have showed up with the chest xray, but if we *wanted* to do a CT scan, insurance would *probably* pay for it. He (rightly) declined to do a bronchoscopy, since that could spread the disease, etc. We did some breathing tests, as a baseline, and I guess it's good to have a local pulmonologist on hand, things being as they are.

But my voice is still increasingly, increasingly shitty. Many other members of the RRP support group have spoken for years in whispers, or not at all, especially from childhood, or had trachs for life, so I know that I should feel fortunate. But last night, I couldn't sing our goodnight song to my daughter. And she cried. And I feel so frustrated and trapped and anxious sometimes.

((I know this is a lot of sorry-for-myself; try being married to me, ha HA!)) but yeah. I can barely talk to people at social events; anything with background noise, and my voice drops right out and is inaudible. My current theory is that my cords have lost some elasticity due to age/abuse/hormonal changes, and that is *adding* to some scar tissue, which is making everything worse as it accrues, maybe in some bad feedback loop, or maybe I have some new "webbing" between cords, or some paps "hiding" behind a cord(s) where we couldn't see before...oh, you tricky paps!

I know that I should feel more relieved and overjoyed that it *doesn't* seem to be cancer, but with the looming ER bill and also the *increasing* and daily, annoying problem, I don't feel relieved at all. I just want to solve this. I just want to talk to my children. I have so much I need to tell them, so much to teach them.

I have an upcoming appointment with my Oto in October. Hopefully we can figure out something new. This can't be it for my voice. I don't want to live this way.