Medicine and my Pharmacist

For one of the tests I am having done, we both have to take a prescription to keep me from getting an infection.  Luckily, I just came across my ex pharmacist in line at the grocery store this week - so I transferred all my stuff to him at his new pharmacy and could get this one filled! :) It made me happy to find him, because I trust his knowledge and I like having him as the point man between all the different doctors that I see. :)  Even tonight, when I picked up the meds, he said "I know this scrip was from a fertility clinic, but I want to make sure you are not pregnant - because you absolutely can not take this med if you are."  Most places just put the sticker on the bottle and hand you the bag!  He rocks. :)

His Test

My husband had to do his portion of the testing today.  Super quick and easy.  Oh to be a boy!

They called and said everything is A-OK ... so now, on with my tests.

The Initial Visit

Usually when I'm heading into uncharted territory, I make a plan.  I google, I read, I get a book from the library, I browse chat rooms and message boards.  Even if I throw out half the ideas I come across, I like to know it all.

I didn't do that before today.  I didn't want to be scared off by people's comments.  I am sure this who process has chat boards buzzing around the world, just based on the things I read during wedding planning.  If people will have 425 posts about exactly which pink they should make their bouquet, then I'm pretty sure people will have at least that many about how babies.  I just didn't want to read it.

We met with Dr. Katz today.  Being in the office was a different experience than many other doctors offices.  First of all, we were the only ones there.  Someone showed up just as we were leaving, but other than that the place was deserted.  I wonder if they do that on purpose, or we just happened to hit a light day?  

So amusing brain lapse - we both had to fill out questionnaires before going.  My husband put our anniversary as 6/29/08 - which is indeed the day we got married.  I however transposed some numbers and put 6/28/09.  What? I just took a year off our marriage.  Oops!  Dr. K interviewed us about our family history and our medical history and all the basic stuff before telling us the timeline and plan that was in our future.  I could tell that Dr. K gives this speech all the time, because not only could he recite the information, he wrote upside down on yellow graph paper so that we could see it while he read.  (I bet he uses graph paper on purpose to make it easier!)

Basic info - now that we've broken past 1 year and are moving steadily towards a year and a half, our chances of being surprised one month are getting slimmer and slimmer.  So - we test!

Mike's test is easy and takes no time at all, of course!

My first test is an ultrasound to see if I have the eggs I am supposed to have, along with blood work.  Good thing about this test is that it'll be on a high pain day - perhaps it will give a clue as to the pain!!  That is the hope.

Then I do another test called an HSG to see if my insides are nice and healthy.

Concurrently, we will do a DNA test to make sure babies we have won't have any serious carrier type diseases like CF.  That's the testing that the big glossy packet mentioned.  

So...that's the plan.  We did not get to meet the nurse that will be our primary nurse because she was off today.  Same with the woman who is in charge of financial stuff.  However, I did dig around in my health insurance website and I'm fairly certain that I'll be covered for initial testing and some of the treatments.  A little frustrating to not get to meet all those people today, but when you get squeezed in before the big holiday I guess that's what happens!

The Packet Arrives

When most doctors tell you they're sending paperwork in the mail, you get a standard size envelope with a few pages of questions and perhaps a sheet with the privacy notice.  The mail from SG was as big as a college admissions packet.  Those envelopes were filled with glossy pictures of beautiful people studying on a perfectly manicured lawn or hanging out in a huge beautiful dorm room that nobody on campus actually lived in. :)  This packet actually had very few pictures.  There were a lot of graphs, charts, and tables towards the back ... especially dealing with the statistics of their IVF program.  I was expecting cutesy baby stuff and pink and blue and green and yellow literature.  Instead, it's bold blue and yellow and looks like information from a business company instead of a group who's in the baby business.  The most interesting flier in the packet was a letter to patients who already have kids.  They were requested to not bring their children to the offices to be sensitive to those patients who haven't gotten there yet.  The flier was a different shape and color scheme than the rest of the papers and looked like it had been designed quickly to be added.  The whole idea fascinated me. But I guess in my world, I'm around kids all the time.  I don't think of them as out of place ever because I spend more time with kids than with adults.

This packet had a lot of information, but was really just a different format for the same pages on the website.  Doctor bios, a description of where you'll start, and the assurances that while most people think of fertility treatments as being just IVF, almost everyone who is seen at their practice is helped long before that stage.  (I liked that assurance.) 

Several times in the literature, I identified myself ... young 30's, regular Gyn referrs patient for inability to get pregnant in the early stages of advanced maternal age, irregular cycles throughout her life.  Those are the patients that they can usually help with minimal intervention.  That's me!  It's good to know these things.

The question packets for each of us are extensive.  I did fill mine out already, and it took a lot of time.  It asks all kinds of questions about my medical history as well as everyone who is related to me.  It's a good thing I listen when people babble about that kind of thing!

Another interesting inclusion was the request for genetic testing.  They have several levels we can choose from, but they recommend doing at least a certain level.  This is one of the reasons I have dreaded baby creation turning into a science project.  Regular people just get pregnant and have the kid!  I mean, lots of people may choose not to have kids if they find out both parents carry a recessive gene for a dangerous disease, but I don't think that regular gyn offices whip out the genetic testing form the day you mention wanting to have a baby. 

This whole thing is overwhelming.

Making The Phone Call

If you live anywhere near Baltimore or Washington, you've heard the commercials for Shady Grove Fertility.  I've been hearing them for years.  In 2003 and 2004, a woman in my grad school carpool went through fertility treatments.  I remember the SGFC commercials starting around then because fertility treatments were something I heard about on a regular basis.  It appears that they are spreading, because when the doctor gave me their card, she directed to me to a branch of their office very near to our hometown.  So now, after meeting on eHarmony, we get to have a baby with the help of another radio commercial.  It would appear that advertising works on us???? :)

Fertility seems to be a go-to topic for long running TV shows these days.  I do remember "Mad About You" having a season about wanting to get pregnant, and others have followed suit - "Friends" and "Rules of Engagement" being 2 I can think of off the top of my head.  I guess it took the place of adopting or fostering a kid to spice up the show.  When I have watched those storylines, I have always told myself that such a small part of the population deals with that situation and that it's just made for TV.  Now we "get" to live at least a small part of that reality!

Anyway, the phone call.  The girl who answered was very perky and positive and very different than any random receptionist that picks up the phone at a regular doctors office.  In fact, after our 25 minute phone call, she sent me an email so that I'd have both her email address and a direct line to get a hold of her if we had any questions.  She's our personal patient representative.  Of course she's in a completely different branch than we will be visiting, so she won't be there in person, but I guess then you don't have to start your story from scratch every time you call.  Pretty smart.  I wish my regular Gyn office had something like that!  They don't even answer the phone - rather, you have to leave a voice mail and get a call back even to make a regular checkup appointment. 

Anyway, SG did need quite a lot of information just to get the appointment made.  Lots of insurance questions because this is a big bucks medical specialty I guess.  I wasn't thinking about my husband's side of this when I called.  I guess I've always assumed that if there was ever a problem, it'd be me.  Recently, my work made a cost cutting measure that made us take our spouses off our health insurance if they had the option to get it through their own work.  This means that we're no longer on the same policy and his isn't quite the "Cadillac plan" that mine is.  I honestly didn't think about him needing to have tests and stuff done too.  I need to call her and give her hubby's details but I did check with his insurance and he should be well covered for the testing phase at least. If it goes much further than basic testing on his end, it could wind up costing us big bucks.  

The whole time I was on the phone I kept thinking, seriously?  I'm having this conversation?  All of a sudden the fact that our having a baby is going to be at least part science project became a strong reality.  Nobody dreams of that!  Our initial consultation is 90 minutes - 2 hours and involves both of us and a bunch of questionnaires that are coming in the mail.  I can hardly wait to see what they're going to ask us...

There's Absolutely Nothing Wrong With Me

My health history is an odd one.  As far as most of the paperwork says, there is absolutely nothing wrong with me.  However, I haven't been "right" in 15 years, or almost half my life.  The official diagnosis is fibromyalgia, and every time I read anything about it, it reads as my life story.  So I'm ok with the diagnosis.  However, it seems that about 75 to 80 percent of doctors in the world (or at least in the sphere I've been in contact with) don't buy it.  Not that I have it, or even that it exists at all.

I'm lucky.  I went to college, I've traveled, I've gotten married, and I've held a good, steady job for 10 years.  Those are all things that some fibro patients don't get to experience, so I know that I'm lucky.  I go long periods of time where my pain doesn't interact with my life and the enjoyment of it so that's good too.  However, I'm pretty sure that normal people don't do all those things while thinking about how badly their legs hurt.

To look at me, I don't look sick.  That's a good thing.  There have been times in my life where that wasn't the case.  My husband has never seen me in a super flare up (and we're hoping that it stays that way forever!!) and I've actually been medication free for two and a half years!  (Disclaimer - I'll admit - I've occasionally thought that I would pay a lot of money if someone would give me some meds RIGHT NOW.)  The last time I stopped taking meds (It was Cymbalta) I was so sick for a month and a half from the withdrawal that I like to tell myself I'll never take them again.  Of course it'd be nice if I never had to make that choice again ... I have been working through the pain by going to bed early and being a hermit for the last year or so, so I've proven it can be done.

So anyway, along the road to the fibromyalgia diagnosis, we discovered that I do NOT have: arthritis of any type, a nerve problem, MS, a brain tumor, heart problems, bone problems, lupus (it's never lupus!), lyme disease, interstitial cystitis, IBS, or hip problems.  Those are all great things to not have! :)  But since I am used to being in pain, I don't go to the doctor at the first different twinge of discomfort.  This is somewhat ironic, because to many it appears that I am a wimp that has no pain threshold at all.  I used to tell my doctors that this fibro pain was a 10.  I'd always answer 10 because I couldn't imagine being in more pain than I was.  Then I had a kidney stone.  Even though I was on heavy medication, I clearly remember telling the nurse that I should call my rheumatologist and apologize because I had no clue what a 10 pain really was!!

We got married in the summer of 2008.  I stopped taking the Cymbalta then, because the doctors recommended going off it for quite some time before attempting to have a baby.  We didn't want to have a baby right away, but we were 29 when we got married so we didn't want to wait forever.  I stayed on the pill until the spring of 2009.  At my yearly visit that spring, my PA recommended that I go off the pill just to get my cycle regulated.  My period started in middle school and then came rarely throughout high school and college.  Often times it was just a few times a year.  Eventually I started the pill just to be regular.  Even on the pill, my cycle was a little longer than 28 days and so she wanted to see if after all those years we had tricked my body into being somewhat regular.  Suprisingly, while I didn't immediately jump to regular 28 day cycles, I was pretty regular.

In October of 2009, I started having pelvic pain out of nowhere.  I was at the book fair the first time it happened.  I sat down after helping someone and OUCH.  It was during my period, so I shrugged it off as being that.  By that night, I was in so much pain that I couldn't use a tampon anymore.  I actually had to go to the store and buy pads because I never ever use them.  The rest of my period was pretty painful, but when the period went away, so did the pain.  

6 weeks later, Black Friday morning, I woke up at 3am in extreme pain.  It was far worse than October and not during my period.  It felt more like a kidney stone.  I actually woke my husband up to put him on notice that we might need to go to the ER to wait out a stone.  Walking around alleviated the pain, it eventually passed, and I got my period shortly thereafter.  The pain didn't go away completely though, and I decided it was time to see the doctor.

In December, I visited my regular PA.  She recommended bloodwork and an ultrasound to check for cysts.  Of course my ultrasound was on a "no pain" day, so it showed nothing.  The blood work had no issues.  When I returned to get my results, she suggested I move on from her to one of the docs.  The doc did an exam, found nothing abnormal, and suggested I see a doctor that deals with a different system in that part of the body.

That sent me to a urologist.  He did a CT scan of my bladder with contrast, which showed nothing wrong with my bladder.  After a few exams and poking, he decided he wanted to do a cystoscopy and check for IC.  The surgery was put off several times because of the crazy 2010 blizzards, but when I eventually had it done he deemed me a "classic case of IC."  Those familiar with the disease know about the SERIOUS dietary restrictions with that illness.  It was going to be a major change of life - so I got a second opinion.  When you live near Baltimore, that second opinion often comes from Johns Hopkins.  The director of Women's Pelvic Health down there un-diagnosed me.  He claimed that people with jobs like me (teachers, also truck drivers) who have to "hold it" all the time will always get a false positive on that test.  He also pointed to the fact that I don't go to the bathroom all the time as a sign of not having the disease.  It took several months to feel right after that test/surgery.  But overall the pelvic pain seemed to be gone.

Fast forward to November 2010.  The pain came back again, just as bad as that very first day.  Interestingly enough, it wasn't anywhere near my period but rather the time I'd be ovulating.  In addition, I had some GI bleeding.  I remembered the advice of the GYN last year and called the last doctor who has a specialty in that part of the body - a GI guy.  He wants to do a colonoscopy which is scheduled for December 2010.

I also re-visited the GYN.  Since the doctor I saw last year has since moved, I saw a new-to-me doctor.  She read over my medical records from the urology stuff last year and asked me questions about my pain.  She even believed in my fibromyalgia!  (Instant trust right there!)  When she offered to put me on the pill to take away the ovulating and the periods to see if that worked, I told her that we'd been trying to have a baby for a year and a half now, minus the months we made sure I wasn't pregnant for surgeries.

She went into instant business like mode.  She was not comfortable with the amount of time we had been trying with no success.  She talked about endometriosis and fibro being friends and causing problems.  She said she could spend time doing trial and error, but that she felt more comfortable sending us to the fertility guys right away.  She recommended calling asap and getting in as soon as we could.  Her urgency was a little scary, but when my period came the next day (right on cue) I called and made an appointment.  And that's where we stand....