My Life as a Research Subject: Part Four (Or, You Have an Incurable Disease. Oh, wait. No, You Don’t.)

I’ve been telling you about my participation in a clinical research study for a medication to prevent menstrual migraines.  At first, I thought it was going to be easy money. Then I met Dumb Nurse, and things went downhill.  In Part Three, I told you the events that led me to feeling done with this study.

And yet, I wasn’t done.

Oh, unfortunate me.

The third week of October, I got a couple of calls from the research center.  Since I didn’t have or want any further appointments with them, I did not answer and let the calls go to voicemail.  The messages stated that they had lab results back that they wanted to give me.  I thought they had given me all my lab results — I’d had high liver enzymes and then they re-tested and everything was normal again, and they’d given me those results already.  So twice I ignored the messages.

On the last Wednesday of October, I got yet another call from the research center.  Wanting to get them off my back for good, I finally answered.  The girl said that they had lab results in, and the doctor wanted me to come down and discuss it with him.

I said, “No, I’m not making any more appointments.”

She said, “Um… well, the doctor really wants to see you about these results.”

I told her to send them to my family doctor and I would review the results with her.  I had an appointment in two days anyway.

The girl said, “Um… well… can I just give you the results?”

Big sigh.  “Fine.”

“You tested positive for Hepatitis B.”

Shock and silence.  Then, “How in the world would I have contracted that?”

“Well,” she said, “it’s contracted through bodily fluids.”

Now, I work in a doctor’s office, but I have almost no contact with patients.  I haven’t had a blood transfusion.  I haven’t gotten any tattoos or had any acupuncture.  I don’t do drugs (so I don’t share needles), and my husband and I are monogamous.  So I basically have zero risk factors for contracting Hepatitis B.

The girl continued, “The doctor wants to see you back for treatment.  He’ll treat you for free.  And if it makes a difference, the employee you had a problem with previously no longer works here.”

My head is still spinning.  “I need to think about this.  Send the records to my family doctor and I’ll discuss it with her,” I said.  And have her re-test me, I added silently.

So, like all patients do these days, I Googled Hepatitis B and confirmed that I had no risk factors.  Then I started thinking… I had a vaccine for some kind of hepatitis about ten years ago.  Which hepatitis was that?

After doing a little more internet research, I determined that it was indeed Hepatitis B that I had been vaccinated against.  And I know that when you have a vaccine, sometimes those antibodies stay in your system and cause false positive results on blood tests.  Chef has experience with this because he had a TB vaccine as a child.  He was born in Germany, where that vaccine is common, although it is not given in the U.S.  So every time he gets a TB test, the results show he’s positive.  It’s a real pain in the neck.

But Hep B vaccines are relatively common these days, and I would certainly have thought that a doctor’s office would know how to interpret the results — or at the very least, ask the patient if she had ever been vaccinated.  They never asked me that question.

That is, not until the phone rang again.

It was the same girl from the research center who had called about 45 minutes earlier.  “Um… I was just looking at your results again, and, um… have you ever have a Hepatitis B vaccine?”

Why yes, yes I have, I assured her, in a much nicer tone than I was feeling.

“Well, these results may be because you had the vaccine.”

“Yeah, I finally figured that out on my own.”

She began to apologize.

I said, “Look.  I’m not necessarily upset with you, but this just goes back to the problems I’ve had with your facility all along.”  And while I didn’t use the word “incompetent” I’m pretty sure I gave her the idea that that’s the word I was thinking.

First she tried to shift the blame, then she tried to tell me how she “went the extra mile” to look into it more after she’d called me.

And I said, “Well it would have been really nice if someone had done that before you called me and I freaked out for an hour.”

She apologized again and made some excuse and said, “Well, that’s why I called you back,” as if that was going to make me ever-so-grateful.

I said, “But you don’t call someone and tell them they have an incurable disease before you have all the facts.  That is not okay.

After a stunned silence, she apologized again.

“Thanks,” I said, and I hung up.

I don’t know that I’ve ever been so angry.  I had become worried — for my own health and the health of my husband — because they didn’t do their jobs before calling me.

Two days later, I went to see my family doctor who reviewed the results with me in detail, taking a lot of time to look things up to make sure she had the information correct.  She showed me what she had found and went over the results carefully, making sure I understood.  She assured me that the reason the test (one of three tests, actually) came back “reactive” was because I’d had the vaccine.  I have new-found love for my doctor.

And I will never participate in a research study again.

Ironically, as I was writing this post, that stupid center called me again. It was the center director who said that the doctor was there and wanted to talk to me about my lab results.

Now, in case I haven’t made it clear, I HAVE HAD IT WITH THIS RESEARCH CENTER.

So I said, “No.”

“Well, he just wants to go over the information with you,” she said.

“No!” I repeated.  “I don’t want to talk to anyone from your center again.  I’ve already gone over the results with my family doctor who assured me that the reason the results came back the way they did is because I had a vaccine.”

“Well, that’s why we were calling.  He wanted to go over that with you.”

“NO,” I said again.  ” You don’t call people and tell them they have Hepatitis B without having your facts straight.  I don’t want you people to call me ever again.

Oh yeah.  I said “you people.”

And then I hung up on her.

Now, are we done?  I certainly hope so.  I really don’t want to write Part Five in this series.

So the question: Was the money worth it?

H- E-Double Hockey Sticks, no.

Sorry for my language.  I know my nieces and nephews sometimes read my blog.  But this time, it had to be said.

Okay.  I’ve got that out of my system.

And thankfully, I don’t have an incurable disease.

My Life as a Research Subject: Part Three (or, You Don’t Understand Your Own Body)

I began chronicling my experiences in a clinical research study on menstrual migraines here, where I talked about how making $30 a month to go to a doctor and take some medication was going to be easy money. Then I wrote here about how Dumb Nurse was making my experience not-so-good by bruising me during a blood draw and repeatedly asking me questions I’d already answered.

I figured that after getting the all-clear on my labs, we’d be back to smooth sailing.  So the next time I started my period, I called for an appointment, just like I was supposed to do.

I started on a Monday, and I called that same day.  The girl who answered the phone told me that she didn’t have the ability to schedule me an appointment, but she’d take a message and have someone call me back.

On Tuesday or Wednesday of that week, I got a call from a guy at the research center, whom I distinctly remember was a recruiter, to make my appointment.  I thought it odd that a recruiter was making my appointment (shouldn’t he be out, oh, maybe recruiting?)  But maybe he’s been cross-trained, so no problem.  I told him that due to my work schedule, I’d need an appointment on a Friday.  He offered me that very Friday.  The Friday of the same week.

Now, I thought this was odd because the medication, which I was supposed to start taking on the first day of my period, lasts seven days, and I had been told that the appointments should be made five to seven days after the last dose was taken.  So that would mean that the following Friday would make more sense, but I figured that since he worked there and was calling to make the appointment, he knew what he was doing.

Apparently not.

On Thursday, Dumb Nurse called.  I couldn’t get to my phone, so she left a voicemail.  She said that she’d gotten a message that I’d started my period and that an appointment had been made for me that Friday, but that it was too early since I wouldn’t be done with the medication yet.  Okay, fine.  Recruiter guy messed up, no problem.  But then, Dumb Nurse says, “And besides, I don’t see how you could possibly have started your period yet.  Our records show that your last cycle started on (she gave the date), so I just don’t see how you could have started again already.  That just doesn’t make sense.  Anyway, I’m canceling the Friday appointment because it’s too soon.  And please call me back to make a new appointment.  And I don’t understand how you could have started again already.”

I have short cycles.  I have had for as long as I can remember.  When I gave the research staff all my information at the beginning of the study, I told them that my cycles were on average 23 to 26 days.  I’m pretty sure that every woman has an extra short or extra long cycle every now and then.  This one was extra short — only 21 days.  It doesn’t happen often, but it happens.  And I was pretty ticked that she had the nerve to tell me that I couldn’t possibly have started yet.  Um, I’ve been menstruating for over twenty years now.  I know when I’ve started, okay Dumb Nurse?

So she called me again, and this time I answered.  Dumb Nurse told me again that she needed to reschedule my appointment, and said again that she just couldn’t see how I could have started already.

“I have short cycles,” I said angrily but quietly, because I was at work while I was having this conversation.  “This one was just shorter than usual.”

“Oh,” she said incredulously.  “Well, I guess we can schedule the appointment then.  But since this is the fourth month of the study for you, we need to schedule it with the doctor.  I’ll need to look at his schedule and see when he’s available.  I’ll call you back.”

And I’m wondering why she hadn’t looked at the schedule before she called me back in the first place.

But… she never called me back.

And I started a new cycle.

By this time, I was done.  If the staff doesn’t know when to schedule appointments and doesn’t call back to get one scheduled — and especially if they are going to imply that I don’t know when I have started my period, then I don’t need the $30 I’m getting for my effort.

A couple of weeks later, Nice Nurse called.  “We were just wondering if you were going to come back to see us again?”

I said, “Well, let me tell you what happened.”  And I told her the story.  I could tell that she was mortified that I’d had this experience, and she apologized.  She said that she understood my not wanting to come back, but the doctor really wanted to see me for one last visit, so could she schedule me?

Fine, I thought.  So I let her schedule me, but I had already decided that I was going to call back and cancel the appointment.

A day or two later, the director of the research center called me.  She said that Nice Nurse had told her about my experience, but she wanted to get my story first hand.  So I told it again.  She apologized profusely.  I mean, really, over and over to the point that I was sick of her apologies.  Finally, she said, “I understand that you’ve been scheduled for a final appointment.”

“Yes,” I said, “but honestly, I don’t want to come.  I’m done.”

It took me a while to convince her that I didn’t need her to do anything to rectify the situation and that I wasn’t going to hold a grudge, but that I was truly, completely, utterly done. Finally, she seemed to understand.

Sadly, though, this was not the end.  Keep watch for the last installment: “My Life as a Research Subject: Part Four” (or, “You Have an Incurable Disease.  Oh, wait.  No You Don’t.”)

My Life as a Research Subject: Part Two

Back in July, I wrote about the clinical research study I was in for a medication for menstrual migraines.  I expected to be in that study through about December, but I have dropped out.  I thought I’d tell you about my experiences.

I was going monthly to my appointments, where the nurse would check my vitals and get a blood sample.  I liked the nurse, whom I will call Nice Nurse.  She was competent and accommodating.

Then one month, the nurse changed.  From the day I met her, she rubbed me the wrong way.  She did not seem to know what she was doing it.  So, for lack of a better moniker, I will call her Dumb Nurse.

At each visit, I was to be given a “headache diary.”  The diary was a set of papers — a different page for each week — on which I was to record any headache symptoms and any medication I might take.  The first week that I saw Dumb Nurse, she gave me the stack of papers, the pregnancy test, and the study medication and sent me on my way.  When I got home, I realized that she hadn’t given me the right pages for the diary.  There were two of the same week, and none of another week I needed.  I called and asked her to send me the correct pages.

“Oh, I gave the wrong pages to a lot of people,” she said.

“Well, can you mail me the right pages?” I asked, and told her what weeks I actually needed.

“No, just write it on notebook paper or something,” she answered.

Now, I would think that the pharmaceutical company would prefer that I use the proprietary documents they produced for my record-keeping, rather than a random piece of notebook paper.  But apparently Dumb Nurse didn’t think that was so important.  Fine.  I scribbled out the wrong dates on one of the papers, and wrote in the correct dates.  On another, I just wrote all the information on the back of the page.  It certainly wasn’t as neat or legible, but apparently it wasn’t important enough to spend forty-four cents to send me the right pages.

I had my foot surgery at the end of August.  After that, I was on pain medication — Percocet and Vicodin — for about a week.  I dutifully wrote down the medications and dosages and the days that I took them.  When I took the paperwork in for my next research appointment, Dumb Nurse asked me several times about the medication, and I showed her where I’d written it all down.  She seemed to have understood.

The bloodwork I’d had at that appointment (at which Dumb Nurse wiggled the needle around in my arm mercilessly, claiming that my vein “must have rolled” and that was why she couldn’t draw the blood) came back with high liver enzymes.  I figure it was probably due to the pain medication.  Dumb Nurse called me and asked me what medication I had been on and what the dosages were.  I reminded her that I had written it in my headache diary.  She asked again, trying to verify the dosages.  I told her that I was no longer taking the medication, and since I was at work and the bottles were at home, I could not look for her, but again stated that I had written all the dosages on the diary.  She asked what days I had taken the medication.  Again, I told her that this information was recorded in the diary.

Since my labs came back with high liver enzymes, I had to go back in for another, more comprehensive blood draw.  Thankfully, Dumb Nurse asked Nice Nurse to come in to do the blood draw.  Nice Nurse got my vein the first time.  And they drew twelve vials of blood.

Holy moly.

But before they drew the blood, Dumb Nurse asked me again about the medications, dosages, and days that I took them.  Seriously?  We’re doing this again?

So I reminded her that I’d written it all down in my last headache diary.  If she had asked me to bring the bottles in, I would gladly have done it.  But she didn’t.  And — silly me — since I had put the information in writing, I figured she had what she needed.  Especially since we’d had this conversation already.

Anyway, I went home, waited a few days, and they called to tell me that the labs came back and my liver enzymes were fine again, so it must have just been the pain meds that I was on.

So… you’d think that would be the end of it, and I could get on with participating in the research study and making my $30 per visit.

Only, that’s not what happened.

Stay tuned for “My Life as a Research Subject: Part Three” (or, “You Don’t Understand Your Own Body”), and “My Life as a Research Subject: Part Four (or, “You’ve Got an Incurable Disease.  Oh, Wait.  No You Don’t.”)

Great Things About Being Self-Employed

In the last couple of weeks, I’ve written about the difficulties and drawbacks of being self-employed, including dealing with health insurance and getting payment from clients.  But I don’t want you to think that owning a business is all bad.  If it were, we wouldn’t be doing it.  So in this post, I wanted to talk about the things that are great about being self-employed.

1. Being your own boss. This is one of the biggest reasons that Chef wanted to have his own business.  He’s a hard worker, but he doesn’t do so well when someone else is telling him what to do.  He’s headstrong and stubborn sometimes, and those qualities sometimes don’t mesh well with a corporate environment where sometimes staff members don’t have the liberty to act on what they think is best.  I know that in my own job, I sometimes disagree with the way the bosses are managing the company, but I can’t often do anything about it, which is frustrating.

2. Flexibility of schedule. To some degree, this one depends on what kind of industry you’re in.  Some businesses need to be open from 8am to 5pm, five or six days a week.  Restaurants and retail might be more limited in what their hours are.  Even in those instances, though, the owner could choose to be closed on Mondays, or to open later or close earlier on certain days.  There used to be a toy store in my town, and the owner would go to a merchandising conference every February.  She’d make it into a vacation, and be closed for one week each February.  It was a slow month for her anyway, so closing the store and taking some time off worked out okay for her.  With Chef’s business, he has to be available to deliver sculptures when the events are taking place (usually weekends and some weekday evenings), but since almost all of his communication with clients is done via telephone or email, he can do that any time of day, from any location (thanks to internet access on his phone).  If he wants, he can go to the shop late at night to get the designing and carving done.  A friend of ours is a photographer (and she’s really good, by the way), and while she has to shoot her photos at the client’s requested times, she can do all her editing at home while the kids are at preschool or late at night after everyone else is asleep.

3. Doing what you really love. I’m sure that there are people who work for large companies who love their jobs.  Teachers and nurses and accountants and architects and mechanics and sales reps — I’m sure there are lots of people who are perfectly happy with their positions and don’t mind one bit working for someone else who will take the responsibility of paying the corporate taxes and dealing with profit and loss statements and managing staff and inventory.  But in other cases, having a small business might be the only way to really do what your heart calls you to do.  For example, it’s not easy to be an ice carver and work for someone else, because ice carving isn’t typically a corporate-type industry.  There aren’t too many ice carving companies in the U.S. that hire more than a couple of people.  So if you want to do that, it’s probably best to have your own business.  I don’t know many photographers who work for someone else, unless they are doing something rather un-artistic like school photos, which I would think would be less fulfilling than wedding photography, for instance.  Even in industries where it’s easier to find a job for another company (like accounting or hospitality or construction, for example), going out on your own allows you to specialize in a way that you might not be able to do working for someone else.

4. Having something that is your own. Sure, there are lots of ways to accomplish that.  There are lots of hobbies you can have that allow you to create, and you can say, “I did this!”  But having a business is a big deal, and being able to make it successful is an amazing accomplishment.  There’s a lot of pride in saying, “I built this company from the bottom up, and it is successful and financially sound.”

Making a decision to start your own business is something that should be carefully considered.  People like to spout statistics about how many small businesses fail each year.  And it’s true — lots of them do fail.  But lots of them succeed, too.  It’s not a venture to tackle lightly or without lots of forethought.  But it’s something great for people who like adventure and want all the benefits listed above.

Small business owners, what things do you love about having your own business?  Do any readers have ideas for a business that they just haven’t had to nerve (or capital) to start up yet?  Anybody out there working for The Man who just can’t wait to get out?  Or do you love working for someone else?

Replacement

About three weeks ago, I posted about how our Scion got totaled.   After what seemed like a long time of waiting, we got the settlement from the insurance.  They paid off the Scion loan.  Hooray!  Now ALL of our cars are paid for.  We don’t have a single car payment!  They also sent us a check for about $4000 to purchase another vehicle.

This is what Chef chose:

It’s a manual (which Chef likes) and has plenty of room for ice sculptures in the back.  We’re pleased with it.

And did I mention?  No car payment!

My Life as a Research Subject

***WARNING:  This post mentions girl stuff like menstruation.***

I probably didn’t need to give you that warning, but I thought I ought to.  I’d hate for you to get all excited about this post only to find out that I discuss stuff having to do with my period.  Because, well, that’s kind of… not a very nice subject.

Anyway, I’m part of a research study that a local doctor is taking part in.  I previously mentioned it here.  The study is for a new medication that’s supposed to help prevent menstrual migraines.  I’ve been to the research clinic twice now, and I thought you might like to know what it’s like to be a guinea pig.

My first appointment was for intake.  I had talked to the recruiter who got me all signed up and answered a lot of my questions, and set up the appointment.  When I arrived at the appointment, I was taken to an exam room where the recruiter asked me a bunch of questions — medical stuff, social history (such as “How many alcoholic beverages do you consume per week?”), that sort of thing.  Then she left, and three medical assistants swooped down on me.  One asked me another 40 questions or so, dealing with my cycles, my headaches, my current medications, and so on.  The second took my pulse and blood pressure, then hooked me up for an EKG.  The third took five vials of blood.

Then the doctor came in.  He asked me another 40 questions or so, including questions about where my head hurts when I get a menstrual migraine, how many headaches I get per month, and how I treat them when I get them, including what medications I take for them and whether I sleep or drink caffeine to try to get rid of them.  He did a very brief physical exam which he said was really just a formality, and then he left.

The nurse was next.  She brought me the study medication (or placebo), a headache journal, a pregnancy test, a book about migraines, and some packets of information about the study.  After I submitted a sample for a urine test, I was free to go.

Now I just had to wait for my period to start.  I was afraid it was going to happen while we were camping, but God was kind to me and delayed it until we got back.  That first day, I called the nurse, and said, “I’ve started,” and she scheduled my next appointment.  Let me tell you, it’s rather odd to call someone and tell them you’ve started your period.

Also, I had to take a pregnancy test.  And that seems silly to me because isn’t the fact that I’ve started my period a pretty good indication that I’m not pregnant? But the pharmaceutical people have to cover themselves, and they don’t know the effects of the medication on an unborn child, so even though I was positive I wasn’t pregnant, I peed on the stick anyway.  And it was negative, so I filled out an affidavit stating that the pregnancy test was negative, and that night, right before bed, I took the medication.

Each day for the first seven days of my cycle, I took the medication at bedtime and filled out my headache journal, stating that I had taken the medication, and whether I had any headaches that lasted more than 30 minutes.  I wrote down whether I took any other medication to get rid of the headache, and whether I had any other symptoms (sensitivity to light or sound, nausea, etc) with the headache.  I also listed any other symptoms I was having that were unusual for me.  (I was super-drowsy, and while I’m not positive that’s a result of the medication, I wrote it down because it might be.)

After the medication was gone, I still had to keep a headache journal.  About two weeks after I had started, I went back for my follow-up appointment.  They asked me a few questions, took a vial of blood, gave me new pages for my journal, a new pregnancy test, and another packet of medication, and sent me on my way.  I’ll see them again in about a month.

So far, I haven’t gotten any checks in the mail, but I figure they probably cut checks once a month, and it hasn’t been a month since my first appointment yet, so I’m not too worried about it.  But I will be keeping an eye on the mailbox for my check ($30 per appointment) because while it’s great to be doing something for science and all and I hope they can help people with menstrual migraines, honestly, I’m doing this for the money. And I’m not ashamed to say so!

Indiana Dunes

A couple of weeks ago, I got to escape the grind of the same old, same old, to go on vacation with Chef, his parents and niece, and some friends.  The Indiana Dunes were calling, and we answered!

We camped at the Indiana Dunes State Park Campground from Tuesday night through Friday afternoon.  It’s a really nice campground, especially if you’re going with a large group.  When it’s just Chef and me, I like the campsites to be more secluded, but since we had three sites, it was nice that it was easy to get from one to the other, and it felt like a nice little camping community.  A water spigot was right next to us, and the trash facility and the bathrooms & showers were a very short walk away.

The beach, of course, was our main attraction.  Normally it’s an easy walk, according to friends who have camped there regularly over the years, but the beach trail was under construction so we had to go around… and going around was long and arduous.

Okay, maybe not arduous, but it was sandy and hot and hilly — and have you ever tried to climb up hills on hot sand?  It’s not very easy.  So usually, since we had lots of people going with all their stuff (towels, beach bags, chairs, umbrellas, etc) we drove.

The sun was shining, the weather warm, and the water perfect.

We all took turns preparing meals, and this was a brilliant idea.  The adults were assigned two meals each, and it was so wonderful to know that we were responsible for these specific meals and no others.  It made it a more relaxing time for everyone, I think.

The one problem we had was lack of appropriate signage.  It was hard to know how to get to the beach, and once you were there (especially if you had walked the long and arduous, hot and hilly trail) how to get back to the campground.  Once when we went to the beach, we found that we were in a no-swimming zone, but we didn’t know that because there were no signs.  (“If we put signs way out here,” one staff member told us, “they’ll just get stolen.”  That seemed like a stupid excuse to me.)  We also learned that swimming is permitted only in chest-deep water or less (one friend was swimming out to a buoy and got sent back), but I don’t recall seeing any signs to that effect, either.  It’s very easy to get around if you already know where you are going, but if you’re not familiar with the park, it’s not terribly evident.


Still, it was a really good camping experience.  The sharing of meal responsibilities, the fun games, the beach, and the showers which were really nice for camp showers all made it a very fun time from which I was not quite ready to return.

I’d definitely recommend it.

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