Moved!

I moved the blog here: http://chocolateandmorphine.wordpress.com/

Commenting on Blogger is a pain in the ass, and I like Wordpress better anyway. Sorry for any inconvenience!

Don’t Hold Your Breath

So, the pulmonologist. He wasn’t terrible, but he wasn’t the wonderful doctor who will do anything to figure out what’s wrong, either. The whole experience was exhausting and confirmed what I’ve been feeling for a long time: I may never find a doctor who can help my dysautonomia, or whatever is making me feel so shitty, let alone understand it in the first place.

I always try to prepare as thoroughly as possible for appointments. I do my homework and bring as much information as I can. This appointment was no exception. I filled out all of the paperwork they mailed me and printed out my surgical history and hospitalizations on a separate sheet because they don’t fit in the lines anymore. I brought my medications with me and actually remembered to bring all of my supplements. Sometimes, it seems like the more prepared I am for them, the less prepared they are for me.

My appointment was supposed to be at 12:30, but I got there early after getting breakfast and walking around Walmart for a while. So, I waited. And waited. And waited. The waiting room continued to fill up while nobody was being called back. Finally, I was called back, vitals taken (but not before starting a fistfight with the scale), put in a room, and told the doctor would be there shortly. And then I waited. And waited. And waited. I sat there on a bench that was almost as creaky as my body, my pain intensifying as time crawled onward.

The same nurse who took my vitals poked her head in and asked if I was ok and if I wanted my mom to come back there. I said I was fine and that I didn’t need my mom to come back there. She explained that the doctor was still at the hospital, but he’d be back in just a few minutes. I’ve heard that line before.

About ten minutes later, a different woman came in and said that we needed to get started on some of the tests that the doctor wanted to have done. By that time, I’d been sitting up for so long that moving was nearly impossible. I was able to stand up without bursting into flames, but walking was another story. My legs were shaking so badly, but the woman barely noticed. She continued to walk at her normal pace, me wobbling along behind her.

She approached me incredulously about why I was there. She said she didn’t understand why my doctor sent me there before trying to treat me. I explained my conditions to her, and she looked them up online to read about them herself. She then proceeded to make comments about people who had it worse than I did. For the mother of someone with type 1 diabetes, you’d think she would be more compassionate.

Then came about a half hour of pulmonary function tests, a breathing treatment, and then more pulmonary function tests. Pulmonary function tests consist of breathing strangely into a tube while locked in a box, all while a lady screams at you over a loudspeaker to BLOW HARDER BLOW BLOW BLOW BLOW BLOW!!! It gets old pretty quickly. My jaw was not amused. There was drool everywhere. Drool-moistened cardboard smells nasty.

After the PFTs, I was taken back to my room to wait for the doctor. Ten minutes later, the young, good-looking doctor was shaking my hand. I explained why I was there. He asked me a few questions, like whether or not I smoked or was currently exposed to secondhand smoke (no and no). Surprisingly, he didn’t mention my EDS or dysautonomia. I mentioned it several times, but only got a response about it when I really probed him. Despite the fact that I wrote about my severe visual impairment in the paperwork and told him about it that very day, he made several nonverbal gestures that I couldn’t see, and he got angry with me when I didn’t respond to his gestures.

He said I have very small bronchial tubes and underdeveloped lungs. There is nothing they can do about it. I asked him a few times if the dysautonomia had anything to do with why breathing seems to take so much effort, and he finally and nonchalantly explained that my breathing muscles aren’t getting signals from my brain. He said this will most likely continue to get worse until…and he trailed off. I asked him what would happen if it does get worse. He changed the subject. I asked him a second time. He quickly scribbled out a prescription for an inhaler and an order for labwork and a chest x-ray. I asked how the inhaler would help with my problems if I didn’t have asthma. He said he would see me again in three months.

So there you have it. Yet another doctor who knows of dysautonomia, but has no idea how to manage it or even try to lessen its symptoms. The whole ordeal took four hours, and I left there feeling worse than when I arrived. Oddly (and frustratingly) enough, mom wasn’t pissed off by how the appointment went. She’s just happy whenever we find out I don’t need surgery.

I’m done. I’m done being told I’m only going to get more and more uncomfortable and dysfunctional as time goes on but, oh, there’s nothing we can do for you. And yet I see other people with dysautonomia and EDS who have doctors who keep trying and fighting to help their patients feel better. Why can’t I have one of those doctors? Do I need more money (yes)? Fancier things (sure)? Bigger boobs (nah)?

Maybe it’s not the doctor. Maybe it’s me. If I was just a better, easier patient, maybe things would be better and easier for me.

A Pox on Our House

My brother is getting over the chicken pox. He came home from school last week after passing out in the library and being rushed to the emergency room. As he was hooked up to heart monitors to make sure nothing was seriously wrong, mom noticed the first few telltale spots forming. Dr. Idiot insisted that it wasn’t the chicken pox. He’s just now past the part where you fantasize about ripping your skin off. We think he passed out because he hardly had anything to eat that day, and he’s normally a very good eater.

As for me, I’ve been incredibly busy with schoolwork. This is the last 10 days of the semester, which means the workload is really intense. I am exhausted. Once the semester is over, I think I’ll be crashing for a solid week, at least.

Done with psychology (YAY!). Two English papers to go.

In just a few hours, I meet with the pulmonologist for the first time. I’m nervous, especially since I found out that he’s in the same office building as the DOOMatologist that I had a catastrophic experience with the year before last. With any luck, he’ll be nothing like that DOOMatologist, and maybe he’ll even know what to do with me. Ah, a girl can dream...

Education Frustration

I have two papers to write for English and four chapters to read for psychology by the 30th. Instead of actually doing the work, I’m doing what any good, responsible student would do: I’m blogging about school.

I just registered for Fall classes. Like this semester, I’m taking two classes, Spanish 1 and Art History 1. They have nothing specifically to do with my major of biology. They’re classes that everyone has to take in order to graduate.

Because of my health, or lack thereof, I have a very hard time getting out of the house. So far, all of my classes have been online. I knew there would eventually come a day when I would have to go to campus for a class. That day has come – there is no online option for Spanish 1. I’ll be going onto campus on Monday and Wednesday for an hour and 20 minutes to learn Spanish. Art History 1 was available online, thank God.

I’ve only been taking two classes because I know that this is the most I can do without crashing. I desperately wish I could take the “usual” number of classes, and I was very tempted to just sign up and go for it. Fuck you, health problems!

Aside from my mom and a few close friends, nobody understands why I can’t just go to school like everyone else. My doctors don’t get it. Most of my family doesn’t get it. Nobody gets it.

I’m getting straight As, so I’m going to be on the Dean’s List and 4.0 List, right? WRONG! I won’t be getting my name in the newspaper for being on the Dean’s List and 4.0 List because I’m not able to take enough classes to qualify for either list. Some of my doctors have said that they’re going to be looking out for my name in the paper, but it won’t be there. And they don’t get it. It’s not fair.

Getting As in two measly classes is no big deal, anyway. At least not in my school’s opinion.

My reduced life expectancy combined with the snail’s pace at which I’m taking classes means that I may never actually graduate. Even if I do graduate, I’m not well enough to even get a job. My efforts will mostly likely go unnoticed. It’s not fair.

Students who struggle against illness to take two classes deserve to be acknowledged just as much as full-time students. I hope people begin to understand this someday. Until then, I’m sticking with it, because my mind is a terrible thing to waste.

Snot Funny

I feel like I’ve just snorted a few lines of fire ants. My eyes won’t stop leaking. I feel like shit.

Two mornings ago, I woke up with the beginnings of what is most likely the head cold mom had three weeks ago. At least she loves me enough to share with me. Why it took my wonky body three weeks to come down with this thing, I do not know. I can’t explain anything my body does – I cannot be held responsible for my body’s actions.

It started out with just a hint of yuck and some extra sneezing. Now, I’m in full-on, flat-out My Body Hates Me Mode – fire ants, leakage of facial juices, and the ever-present nausea that comes with postnasal drip.

Won’t someone kindly rip out my sinuses, please?

On a happier note, everything is worked out with my insurance. Well, everything I actually CAN work out with my insurance is all worked out. My pain doctor’s office got my new referral, insurance approved my morphine for six more months, and I didn’t even have to have them change my primary care physician because they had the right one on file! I’m still waiting for my insurance cards to arrive in the mail, but I can get medical care and prescriptions filled by bringing the letter they sent me wherever I go to get treatment.

I get all of my meds refilled next week, and I still have to find out which ones are the least expensive so I can pay for some out-of-pocket so I can have the more expensive meds covered by insurance (they only cover five prescriptions per month, bastards!).

Everything fell into place perfectly, which is unusual for me. It’s a huge weight lifted off of my shoulders. I have several big English papers due in the next few weeks, and now with this face-explosion of a head cold, insurance issues are the last thing I need or want to be worrying about.

Bye-Bye BlueCare!

This morning, I called BlueCare to check to see if the prior-authorization for my morphine had been approved, or even requested in the first place. Instead of finding out the status of the prior-authorization, I received some surprising news.

As of March 26th, I have been covered by Americhoice! TennCare approved my request to be changed from BlueCare to Americhoice! I was told that the request would take about 30 days to be processed. It took THREE days.

I no longer have to worry about whether or not my appointments with my pain management doctor will be covered (unless they dump Americhoice patients, too).

There are things I still have to take care of, phone calls I still have to make (ugh, I hate the phone!), and ducks I still have to put in a row. Because it will take time to get my new insurance cards, and I have medical needs that are time-sensitive, I have to:

- Call Americhoice and see if they can tell me what my ID number is.
- Have them change the primary care physician they have on file for me, if it isn’t already correct (because they usually just assign a primary care physician based on how close they are to where you live – mine is more than an hour away).
- Call my primary care physician’s office and tell The Referral Lady that I need a referral through Americhoice to my pain management doctor’s office.
- Call my pain management doctor’s office and let them know that I need a prior-authorization through Americhoice for my morphine.

I’m off to check the mail and get these phone calls over with (ugh – anyone want to do it for me?).

A Pain in the Neck

I have a ton of reading that I need to do for psychology, but my neck is being especially painful. My whole neck and both shoulders are burning, stinging, and feel cold-hot, very much like the feeling you get in your fingers after you've been outside in the freezing cold for far too long. Every time I sit up to try to get some reading done, the burning, stinging, and pain starts up again. I’ve taken my painkillers, but they aren’t cutting it, and they make me even more tired than usual.

Mom will without a doubt try to convince me to let her read to me. Unfortunately, I have a hard time retaining information when it’s read to me. I learn and remember better when I can read for myself. Plus, I don’t like letting mom help me. It’s not because she’s not a good helper – she’s a great helper. It’s just that…it’s not her job to help me. I signed up for school, I should be able to do it myself.

I’ve always been stubborn when it comes to accepting help from others. I would sooner let myself get angry, become frustrated, and fall behind than allow someone to help me.

I have no idea why.

This stubborn refusal to accept help even extends to my dealings with doctors. I hate asking for help so much that I’ve let symptoms go unchecked for years, even decades. I get irritated with doctors who don’t ask the kinds of questions that pull information out of me, even though it’s my responsibility to bring things up and not theirs to drag it out of me.

A small part of me thinks that if I just opened myself up to people and let myself be helped, my life could be a lot better. Then, there’s the other part of me, the much bigger part that’s afraid of getting shot down if I open myself up.

I know I can choose which part to listen to, and that I should probably choose the part that’s telling me to open up. I just wish I knew how.