doctor's diagnosis: sinusitis

I was nervous to go to the doctor today. I called around to a few clinics and urgent care centers yesterday afternoon to see what places could take me soonest and at what price. Despite reading a couple lackluster reviews for the health center closest to me, I booked an appointment anyway. Were I needing to see someone about Migraine, perhaps I would have been a bit more cautious. But since I was going in to get some antibiotics for a seemingly routine sinus infection, I figured it wouldn't hurt to see a family doctor and hope for the best. The initial appointment is only $50 (over $110 cheaper than my second option, and 4 miles closer to my house!); after that, you pay on a sliding scale based on income information you provide to the clerk. The maximum payment for a doctor's visit is $50, however. Awesome.

It's been over two years since I had a good, old-fashioned, regular (read: non-neurologist, non-ER) doctor's appointment and I was pretty nervous. I prepare myself for a meeting with someone who might not be a good listener, who might not be warm and caring. Despite his being warm and kind, my former neurologist was not the best listener--his NPs were atrocious, but that's a whole other story.

This feels silly, to be basking in the glow of a great doctor's appointment. Who does this? Someone who has been treated as if she were just another routine appointment to check off the list during a very long, very typical day? I'm not sure. Someone who's used to people trying to play her (contractors for home improvements, car repair folks, insurance companies)? Maybe. In any case, I was really happy with almost every aspect of my time spent at the place.

First off, I must give props (ew--I've never said that before and hope never to again; I'll keep it in to remind myself of that solemn oath) to the receptionist I spoke with yesterday afternoon when making the appointment. She heard how stuffed up I was and was really warm and very helpful: "Oh, honey, you don't sound good! Let me see if I can squeeze you in tomorrow morning. And I'll call you if something opens up this afternoon!"

Despite my better intentions, I drove to the center instead of walking. Hey, it was raining and I felt sick and the .9 mile drive probably didn't kill the environment all that much. By the time I left, the rain was POURING down and I was grateful to have a car. I walked in to a room half-full of families of various races. Seemed most people had colds or the flu--it is a rainy December, after all. The guy at the desk was really friendly, even when I walked up to the window after an hour to ask when I would be seen. Yeah, that was the frustrating part--my ten o'clock appointment ended up being at 11:05. Alas. Luckily I didn't have anything better to do than sit and read.

Oh, oh! The WAITING ROOM! I'd brought my red-tinted shady glasses to protect my little eyeballs and brain from the inevitable fluorescent lights, and guess what? The waiting room was softly lit with low-wattage incandescent bulbs. Oh, what a relief, especially when the wait was a bit long! Even my highly revered neurologist, a headache specialist, has glaring fluorescents in the waiting room. (I really don't mean to rag on him and his staff so much--apparently I have some pent-up bitterness!)

I got weighed and was a bit disappointed--turns out the post-Zonegran weight I successfully gained has, for the most part, dropped off again. Still technically underweight by a couple pounds, but I don't look creepy-skinny or anything. Not at all. I waited in the exam room for a while between nurse and doctor visits, but I passed the time by reading an outdated People--I hadn't realized just how bad the writing and stories and fluff had gotten! Not my style. The doctor walked in and I immediately felt a sense of relief--she was young, smiling, and genuinely apologetic about the supposedly atypical wait. She seemed knowledgeable about Migraine disease, patiently listened to my whole story of the cold-turned-sinus-trouble, and made some OTC drug recommendations as she prescribed an antibiotic. I mentioned something else troublesome to her and she was really comforting and helpful on that front, too--more on that later. For now I'm freaking myself out a bit over a symptom that could very well be nothing, so I'll just wait it out 'til I forget about it again.

All in all, I was really pleased--can you tell? What a sense of relief! How great to have a ten- or fifteen-minute appointment with a doctor who listens, who's friendly, and who didn't act like I was crazy when I mentioned weird symptoms I was concerned about. Three cheers for new doctor! I have a checkup next week. If I'm still this infatuated, maybe she will become my regular family doctor! Yippee.

Very sleepy and very sinusy and very drugged up.

No significant migraine pain for eight days, kids. EIGHT DAYS! True I have this sinusitis frustration, but it sure does beat a migraine episode!

green snot alert

Gross title, I know. But apt if you were to step into my life this very day.

I've had a cough/cold/stuffy head for over two weeks now. We all know I get angry about my own (and others'!) lack of health insurance, but at times like this that anger really flares up. I am confident that this is a cold. I am not being helped much by over-the-counter medicines and, now that the cold seems to be morphing into a sinus infection, I feel that I may soon want a doctor's help/antibiotic prescription. But I won't go to the doctor for this. First off, I don't have a general practitioner anymore. Used to have one but, as per UGA policy, I can't go see her now that I'm not affiliated with the university. Alumni not welcome. Wah. Never bothered getting another GP because, well--I had no insurance and no inclination to drop a few hundred bucks to see a doctor just so I could establish a relationship with him/her.

So now I'm green-snotted and stuffy-headed. Sinus infections can be extra obnoxious for us migraineurs, as we're oft used to having stuffy heads related to migraine attacks. Stuffy heads can lead to migraines or be a side effect of certain stages of migraine. I don't want my stuffed self to turn into stuffed-and-migrainey self. So far so good, but still.

I'm so mad that I can't call up a friendly doctor and say, "Hey there, this is your patient, Janet! What's going on? Listen, I'm feeling icky and think I might have a sinus infection. Could you be old-fashioned-doc for a sec and call in a prescription for me? Oh, you can't? That's okay--how about I make a drop-in visit to your office this afternoon. Cool? Cool."

Last time I made a doctor's appointment I was told it'd be over TWO MONTHS 'til I could get in to see the doctor. That two months is almost up--I have my appointment with this guy in mid-December. Many an Athenian has told me he can work wonders with migraineurs, focusing on lifestyle changes. I love a good holistic doctor who's not a quack--this guy is supposedly the real deal. I'll drop a couple hundred with fingers crossed and get back to you. It's gotta beat the rude service and hyper-prescribing tactics I ended up encountering at my neurologist's office.

Scratch that: EX-neurologist. I think I may have forgotten to mention that I dumped him a month or two ago. Yay, me! I gave him and his office a chance to keep me, but they didn't seem to give a crap. Alas.

Anywho. The 15+ day cold isn't much aggravating my head, though a big cough can certainly give me a burst of mild head pain. Ick.

I'm off to blow my nose. Jealous?

save healthcare & our country!

Hi, guys. The Obama campaign folks sent me the following list and I thought I'd take their advice and repost it. If you're not pro-Obama, rest easy--I'm not going to pressure you to change your mind (even though I really think you should!). If you are pro-Obama, reading the following list is very important!! Repost this list if you desire.

TOP 5 REASONS OBAMA SUPPORTERS SHOULDN'T REST EASY

1. The polls may be wrong. This is an unprecedented election. No one knows how racism may affect what voters tell pollsters—or what they do in the voting booth. And the polls are narrowing anyway. In the last few days, John McCain has gained ground in most national polls, as his campaign has gone even more negative.

2. Dirty tricks. Republicans are already illegally purging voters from the rolls in some states. They're whipping up hysteria over ACORN to justify more challenges to new voters. Misleading flyers about the voting process have started appearing in black neighborhoods. And of course, many counties still use unsecure voting machines.

3. October surprise. In politics, 15 days is a long time. The next McCain smear could dominate the news for a week. There could be a crisis with Iran, or Bin Laden could release another tape, or worse.

4. Those who forget history... In 2000, Al Gore won the popular vote after trailing by seven points in the final days of the race. In 1980, Reagan was eight points down in the polls in late October and came back to win. Races can shift—fast!

5. Landslide. Even with Barack Obama in the White House, passing universal health care and a new clean-energy policy is going to be hard. Insurance, drug and oil companies will fight us every step of the way. We need the kind of landslide that will give Barack a huge mandate.

If you agree that we shouldn't rest easy, please sign up to volunteer at your local Obama office by clicking here:

http://pol.moveon.org/obama/office.html?source=blog&id=14534-5183653-nFgmwbx&t=1

When meds make you lose your mind

To everyone who's ever felt out of it or stupid while taking a brain-altering drug: this short but poignant New York Times article by Judith Warner is wonderful! I responded to the article with this long letter (which initially started as a short comment). Links throughout lead you to relevant blog entries.

Dear Judith,

I confided in a friend a few weeks back about how stupid and out of it I felt while on my preventive drug (Zonegran) for around 1.5 years. He forwarded me this article this morning--I'm so glad it was published in such a large forum!

I joked a lot about the potential side effects ("difficulty word-finding," "cognitive impairment") when I first started popping Zonegran, but I never thought I'd actually be one of the patients affected. My cognitive impairment didn't kick in until a few months into drug treatment--and the patient leaflet said that all the cognitive side effects are usually here and gone after the first six weeks of treatment. I decided I was just getting stupid. For the first time, I wasn't in school or doing academic reading. I couldn't work a 9-5 job because of my migraine attacks. Maybe I just lost my brain.

Madge (commenter above), it seems you're admonishing Judith for not having said something sooner to her doctor or pharmacist. It seems to me that Judith took action pretty quickly. As for me, I was embarrassed about the side effects and not even sure if they were side effects from Zonegran--maybe they were just side effects of life, the new and not-so-improved Janet. I'd always prided myself on my writing and thinking ability and suddenly that was disappearing. This phenomenon is so strange, so unfamiliar, and so hard to pinpoint that it's not easy to see that it's connected to a drug you started months ago. I didn't say anything to my doctor or pharmacist about it until months later.

Someone named "cla" commented before me about how busy doctors are today, how perhaps we patients should adjust our expectations instead of expecting doctors to be at our beck and call (I'm paraphrasing here--hope I've not taken any liberties, cla). This is b.s.! I KNOW that doctors are overwhelmed with insurance claims, paperwork, bureaucracy, and five visits a day from drug company peddlers who overwhelm them with ads and sample medications. I think that cognitive side effects should be treated as seriously as physical side effects, that doctors should be honest and up front with patients. Migraine disease is so much more than a series of episodes (which may or may not involve a headache)--it's a disorder that affects your ability to function, your ability to have a so-called "normal" life, your ability to enjoy what you have without being worried about the next attack. If doctors are focused entirely on how the body is affected (if they're focused on that at all and not distracted by their bureaucratic duties) and not focused on how the patient and her life are altered due to the disease (or drugs given to treat the disease), those doctors need some lessons in patient-doctor communication. They need to learn more about migraine's ins and outs and realize that, just because the clinical trials didn't reveal a prevalence of a certain side effect, LOTS of people are losing their minds, their selves, while on certain prescription meds.

After over a year and a half on Zonegran, I finally weaned myself off (with doctor's straightforward assistance and little care as to why). I still don't feel as smart as I used to. I still have trouble finding the words that used to come so easily to me--but I have to have the faith that this will come back to me. That I've taken brain-altering drugs and it might just take awhile for the firing synapses to resume their old speed.

In closing, thanks for this article. Thank you so much.

"narm!" (arm numb...narm!)

For those of you who are Six Feet Under fans, there's a slim chance you know what I'm quoting in today's post title. If you're confused, worry not: I shall not enlighten you. I will tell you to watch Six Feet Under, however. I've watched the entire series twice over. I love it.

But back to business: my left arm has been a state of discomfort for a few days now, and my hand has hurt off and on. I suspect a pinched nerve. Yeow! You know when you awaken after sleeping on your side and your arm feels out of whack and slightly numb in spots, slightly painful in others? That's how my arm has been feeling for DAYS. My sneaking suspicion is that my usually funky back has done something shady to the nerves that run down my arm. I'm going to give it a little more time before saying uncle and spending the dough on a doctor. It's crazy how large a portion of my ever-dwindling money pile goes to health costs.

Sometimes I wonder if I'd be more apt to see a doctor if I had insurance. My immediate response is "YES," as I now feel I would not take health coverage for granted as I did for the first 26 years of my life. I can't imagine being able to see a doctor and not having to pay an arm and a leg--the thought has become hard to wrap my mind around. When I did have insurance, I didn't like going to the doctor, though. I postponed visits and didn't have a tendency to make appointments to investigate such things as numb arms. Maybe now that I've grown older and wiser I'd change my habits. Maybe the subject is null and void since I don't have insurance and won't have it for awhile.

Poop da loop. Off to a productive day!

the face of rejection

That's me, all right. With renewed hope and energy, I applied for an insurance plan yet again a few weeks back. Last week an agent from the insurance company called me to talk about the medications I am on now (as well as the ones I have taken for the past three years). I was honest and straight-forward while also telling the extremely helpful agent how much this would change my life, to actually have insurance again. I told her how I hadn't even had to fill my triptan prescriptions yet because of all the free samples my doctor gives. I told her how I'd weaned myself off of some expensive drugs months ago and had no interest in starting them again. I assured her that I was still taking measures to prevent Migraine attacks, but that instead of being expensive pharmaceuticals, they're herbs and vitamins I pay for out of my own pocket.

She spoke as if I would be covered. I assume that tone is easier to take, rather than beginning each explanatory sentence with, "If you are chosen as someone we'll cover, then this is how it will work..."

I had high hopes. I thought that THIS time it would work. My hopes were diminished a bit when she ended the call by saying, "All right, Janet, I'll report all this information to our underwriters and get back to you." Underwriters look at the number of meds and the various diagnoses you have. In my experience, they don't really factor in how badly someone could be helped by insurance--that would chop their profits in half, I'm sure, were they to accept those that needed it for frequent care.


In any case, I got a letter back on Saturday afternoon, indicating that the decision was made by the underwriters almost instantly. After all, they must have sent the letter the day I spoke with the agent, given the turnaround time. The answer? NO. The reason? A history of chronic Migraine disease and various prescriptions medications on my record prevented me from being approved.

Duh, that's why I need it.

I've been putting off watching Michael Moore's Sicko since I've been pretty sure it'd really piss me off. I think I'm ready to be really angry about this. Maybe I'll rent it this week.

GRRR!

please insure me!

I sucked it up and spent the last couple of hours learning about insurance plans (again), reviewing optional plans (again), looking up insurance-related vocabulary (again), and filling out details about my health (again) in the hopes that an insurance company will let me be a part of their money-grubbing workings and not reject me (again).

Thank goodness for ehealthinsurance.com--I like being able to see all my options laid out at once. There's also a "chat live" icon you can click--a chat window opens up and you can ask the folks whatever questions you might have. There's a longer wait time for this feature on Saturdays, but hey--they're around on SATURDAYS!

I'm trying not to already feel hopeless about this, but man! It sure did take me a long time to fill out all the forms the last several times I tried to get insurance, and everyone rejected me. Perhaps cutting down the number of prescription drugs I'm on should help.

Anyone have a particularly good plan that helps a lot with your migraine care?

Have a nice afternoon/evening, depending on where you live!

Goodbye, Zonegran/Hello Petadolex!

Guess what, guess what, guess what?! I am officially weaning myself off Zonegran. My neurologist gave me a plan to follow and everything. I started on the drug in April 2006 and quickly worked my way up to 200mg/night. In October of 2006, my neurologist upped it to 300mg/night in the hopes of killing off more Migraine attacks.

It is now January 2008 and, after months of going back and forth about the issue, I've finally started the process of getting off the meds. This marks the second night in a row I'll be taking 200 mg/night instead of 300mg.

Here's the plan.

Up until now: 300mg/night before bed.
Then for two weeks: 200mg/night before bed
For two weeks after that: 100mg/night before bed
And for the two weeks after that?: 100mg every OTHER night before bed

And then I'll be done. Minor snafu? The doc didn't call in enough pills to the pharmacy to get me through all the weeks. I'll run out of pills during the last stage, right when I've almost got it beat. We shall deal with that when the time comes--a quick but annoying call to the neurologist's voicemail will clear that right up.

To complicate and [I sincerely hope!] improve things, I've been prescribed a new treatment, if "prescribe" is the accurate word here. My doctor is requesting (nay, ordering!) that I begin taking a new pill every day, but not one I need his signature for. What is this, you ask? Why, it's a little something called Petadolex. This herbal supplement has virtually no side effects, is relatively inexpensive (especially if you're starting from scratch sans insurance like me!), and is readily available on this here World Wide Web. There are actually verifiable scientific studies in which results show that Migraine frequency and intensity decreased in people using it daily. And my neurologist, one of the foremost experts in the field, is recommending that I take it.

So why didn't my doctor tell me about this long ago?

I fear that the answer lies in the well-founded fear that doctors are getting some pretty big payoffs from Big Pharma in exchange for pushing certain drugs to their patients. (I just stumbled across this article that describes how influential drug reps can be! Frightening.) This doesn't seem entirely true in my case, perhaps, since I was taking the generic form of Zonegran anyway--but I lasted the first four months of my drug therapy without needing one prescription from my local pharmacy. Why? Because my neurologist had tons (TONS!) of free samples to give me. While I was very grateful for this, I also find it off-putting to think of the millions of dollars and labor hours spent in order to get those sample packets into my hand. I fear that the motive isn't just to make me and others like me well. I think it may have to do with handouts, payouts, and some free vacations and dinners to boot. A friend of mine who's a pharmacist just went to a talk given by my aforementioned well-known neurologist--a talk about Topamax. "Why would he do such a think in his free time? You know he's got to be getting paid for it."

And I'm off on a little bit of a tangent. I'm really hoping that there's a good reason why I went through four preventative treatments, all of which had adverse side effects, all of which I told the doctor I was hesitant to go on, before he told me about this side-effect-free alternative therapy. I really hope that the reason has nothing to do with his being money-grubbing, 'cause I like him. I do.

Goodnight, and I hope you're feeling well!

prescription drug prices are out of CONTROL

Let's just talk about how zonisamide, the generic form of Zonegran, costs me $25.00 for a month's supply at my local Kroger pharmacy. I think the regular price is $35.00 but they gave me a lower price to keep me from leaving. That's 90 pills for $25. Pretty nice, eh? (The brand-name drug is way more, as I'm sure you could guess.)

As I've mentioned before, I have no insurance, so all prices mentioned here are what one must pay if she has no health plan and no prescription coverage.

I was out of town for Thanksgiving and didn't have enough medication to last me the whole time. I figured I'd have my neurologist call my prescription into a Florida pharmacy near my parents' house for the sake of convenience. Walgreens was the closest place--heck, there are about 83 within five square miles of their subdivision. Ridiculous. The same exact number of the same pills (same generic drug manufacturer, mind you) had an unbelievable price tag: approximately $130 (give or take a few bucks) for 90 days. No, they don't match prices. (Kroger and other leading and not-so-leading drugstores do.)

IT IS SCANDALOUS. Truly. They do this just for profit, just because they can. If you know of some other reason, then let me know. I doubt that Kroger gets the drugs for a lot cheaper than Walgreens does. I bought a few days' worth instead. I spent $21 and change on enough pills for vacation--that's almost as much as I spend on an entire MONTH when I'm at my home sweet home.

I'm so angry.
Justifiably so, I think.

Figured I'd share my righteous indignation with you all on this fine, overcast Sunday afternoon.

O! Canada

What with Patriot Act-driven paranoia seeping into my mind just a little bit now and again, it strikes me that this might not be the best idea, but I'll say it anyway: I bought some prescription drugs from the internet. A legit site in Canada that sent me my drugs WAY below cost what they would have been at my local pharmacy. For a girl who has zero insurance (with no insurance or full-time job with benefits on the way), this was a necessity I had to cash in on eventually, and eventually came in February 2007.

The service prompt, the pharmacists thorough and understanding. I'll do it again in a heartbeat and for a fraction of the cost. If you're interested in what company I went with, I'll let you know--I'm not about to advertise for any particular place out here in the open, but I will recommend what worked for me if you're daunted by all the options and are scared of getting a place that seems apt to take your money and run.

stories from the moneyless trenches, or, "well, that certainly explains a lot."

For numerous reasons, I just compiled a list of all my out-of-pocket medical expenses for 2006. For the first three-quarters of 2006, mind you. Before I reveal how much of my own cash I've dished out to pay for treatment, over-the-counter medication, and the ridiculously overpriced prescription medication I rely on to function somewhat normally, keep the following tidbits in mind:

1. I have had a health insurance plan all year. True that it switched last month, but I've been covered all year, and total money I've spent, the total I'm set to reveal, does not include health insurance plan costs. My sweet parents helped their then-student daughter with that burden.

2. I have had a health insurance plan all year. But I still pay exorbitant amounts for prescription drugs. That's all I'll say about that.

3. I'm only counting costs of things for which I could find receipts. Those of you who know me well know that I am not the best at holding onto small bits of paper with teensy numbers written on them, so who's to say what I might be forgetting?

4. I don't have a steady source of income. Seeing this number might not seem like much to you, but when you think of how I only work a handful of hours a week and have not even a steady part-time job (let alone a full-time one), it might hit home that this amount of money is what it takes me to make in surprisingly lengthy periods of time. But finally it makes sense to me why I don't have money--it's true that I spend almost everything I have on Migraines. Yay, head! Suck up my money! Yeehaw. (It's true that seeing this grand total, though shocking, is a source of some relief--at least I know that I had money at some point, and that it wasn't all a dream.)

Okay, here we go: $2,625.

*I mean my tone to be matter-of-fact, not whiny.

a surprise in the mail

I got a bill from the place where I got my MRI in late June. My insurance didn't cover the MRI, as it turns out. I owe $2,260.

Remember how I mentioned that I have $48 in the bank?

a little human touch...

So maybe having someone hug me, hold me, talk to me, or stroke my hair is particularly soothing during a Migraine attack mainly because I am an extraordinarily affectionate person to begin with. But I just wanted to say how incredible it is to have others' support while I'm feeling awful.

I've mentioned before that I don't always tell people what's going on with me, health-wise: "Oh, I'm just tired." "Oh, I have a lot of work to do." "Oh, something came up--I'm just not going to be able to make it." In recent months, I've really tried to tell friends the truth as to what's going on in my brain: chaotic, throbbing pain.

To my relief and joy, people have been supportive. Here are just a few snippets of what some exceptional people have contributed to my life lately, causing me to smile and helping the pain be just a little less sharp.

1. My friend R. learned about my Migraine disease several weeks ago during a chat over beers. He has turned out to be incredibly supportive of my search for new methods to help my pain. Some things he's done? Well, he told me he would give me his head if he could. (Silly, but the sentiment was genuine!) He also has done research on Migraine and has forwarded me some enlightening articles.

2. I've said before that I've been getting "weekend headache" during the last several months. A couple of nights ago, I had to go home early due to the pain. Wanting to be supportive of my friends tipsy hunger, I told L. I would try to eat with her downtown. Unfortunately, the restaurant's lighting was entirely too bright and I couldn't stand it. She made her order a take-out one and stood outside with me, making me change benches so that the seemingly glaringly bright street lights wouldn't blind me--she stroked my head as she stood strategically in between my throbbing eyeballs and the street lamps.

3. That same night, I got home and took my medication. Checked my email for the hell of it and one of the boys I'm not-dating-but-not-not-dating was online. As one who's especially vulnerable when trying to endure a Migraine attack, I told him what was going on with me. He stayed online with me as I typed to him how I was feeling. Though he lives really far away, he let me know how he would hug me and hold me if he could. As cheesy as it sounds, that support was so very comforting.

4. Final vignette, and then I'm off to bed.

My insurance plan allows me to spend $1000 on prescription drugs before I have to start paying for the medications myself. Surprise, surprise: with the cost of Migraine medication, my allotment was out after only 3 months of being on my 12-month insurance plan. Recently I got my refill on Relpax & Effexor XR (for Migraine treatment and not for depression, as it's commonly prescribed). The pharmacist was kind but impersonal as she had me sigh the check. "So, you don't have insurance?"
"Oh, I do, but the prescription allotment ran out."
(No comment from pharmacist.)
The grand total for one month of Effexor plus 12 Relpax pills was well over $300. I tried to beam like a champion as I signed away what little money I have in my account. I wanted the pharmacist to smile or do something to acknowledge my situation. Nothing.

Then, as I handed her my signed copy of the receipt, she looked at me and said, "God bless you, ____." I'm not religious, and I must note that her tone was more of one used by a lovely girl raised in the South who uses the phrase frequently rather than one who is extremely Christian.

Just those words, along with her look of genuine empathy, were enough to drive me to tears. I said a quick thanks and made my way out of the building as my eyes filled with water.

Just these little moments make things feel so much better. Just having someone make the effort to connect with me and say that he/or she understands a bit of my struggle means the world...