BFN. BFN. BFN…Infinity…

BFN
Quick Update:

My day got off on the wrong foot–can you guess what happened??? You are correct if you guessed that I tested with a FRER and got a Big. Fat. Negative. at 12dpo. I told myself “it’s going to be negative, so don’t freak out and panic and try to find that second line that isn’t there”. And I played it pretty cool, I think. But then Mr. MLACS called and upon hearing him say he’s sorry and we’ll try again my voice cracked and the tears of frustration, sadness, and embarrassment that I didn’t even know I was fighting started pouring out. Then Mr. MLACS said something I didn’t expect since finances are super tight this month–he asked me what it would cost us to do the medicated cycle (Letrozole + Bravelle + HCG Trigger, with Ultrasounds and IUI) and I told him, and he said “I may be able to swing that”. WOW. Thank you, Thank you, Thank you, Mr. MLACS.

So today I called Express Scripts to see about pricing the Letrozole and even though I figured it wasn’t covered I asked about my coverage for Bravelle…and guess what…it’s covered! Not entirely, as I believe I am responsible for 10% of the cost of generic and 40% of the cost of name brand, but that’s better than I expected! I’ll take it! After that I was frantically calling my OBGYN Dr. Angel’s office trying to get a script for the meds. The Bravelle must come from Freedom Pharmacy, and in my experience they take forever to get the order filled and the meds shipped, so I was thrilled when Dr. Angel himself called me back and I was able to explain all of this to him–and he happily agreed to send the prescriptions today. I LOVE this guy! I think a medicated cycle in November may actually happen! Goosebumps.

As a side note, did you guys know that Express Scripts (the only mail order pharmacy I know of in the US since they took over Medco) also owns Freedom Fertility Pharmacy? Can you say “Monopoly”?!! This is just insane to me, that they get away with this. And explain to me why Freedom Pharmacy was going to charge me $350 for ONE month of Endometrin, but Express Scripts only charged me $45 for a month??? Please, explain to me why two companies that are part of the same corporation and both contracted through my insurance are charging such drastically different prices for the same product. Why is nobody talking about this Monopoly? Is this part of our “healthcare reform”, that there should be no competition in the gazillion dollar pharmaceutical market in America? Wth dude. End rant.

XOXO,

MLACS

 

Open Mouth, Insert Foot

Lately, all the people I talk to in the medical profession (mostly nurses), treat me as though I have never researched a disease I’ve had for 10 years. I don’t know what sort of idiots they’re used to dealing with, but I know a helluva lot more than they do–both from a scholarly perspective AND from a personal perspective. For example, one haughty NICU nurse said she had been diagnosed with UC a year ago. I asked what meds she took and she couldn’t even name them, but recognized them when I rattled off the different brands/types. She said “well it doesn’t matter because they’re all the same”. I didn’t bother getting into a pissing match with her, but she couldn’t be more wrong. The meds we discussed were all variations of the same ingredient (mesalamine) but they are NOT biologically equivalent–which is to say, that they are not all broken down, absorbed, and utilized the same in our bodies. Prime example: I was thrilled when I recently switched from taking 6 Delzicol capsules, to 3 Asacol HD tablets (twice daily). But the extended release meds I tried previously (Lialda) never worked as well for me, and unfortunately neither did Asacol HD, so I switched back to Delzicol this week and have seen improvement. This nurse also uses Canasa suppositories (as do I) but she crinkled her nose when I told her I’m using Remicade. Which brings me to…

ALL my doctors (particularly my GI’s) tell me to use Remicade while ttc and throughout pregnancy. ALL the boards I’ve consulted where women posted stories of their pregnancies while on Remicade and their children’s health afterwards have been nothing but positive. ALL the infusion nurses I’ve had have told me stories of Remicade patients who delivered healthy babies…

But on the flip side, all the nurses (both acquaintances and my infusion nurses) have this nervous, worried/confused look on their faces when I say that I intend to use Remicade during my pregnancy. What gives?! None of them have offered me a “cautionary tale” and in fact each of them can recall at least one Remicade patient that had a normal pregnancy.

Yes, I do read medical journals (not just google), and I’m not blindly following my doctors’ suggestions. Unfortunately (fortunately) researchers aren’t allowed to use pregnant women like lab rats, so there’s just not a lot of data available to support/refute the use of Remicade during pregnancy. So I have to base my decisions on the data I have, the severity of my disease, the experiences of other women who’ve used Remicade in pregnancy and my doctors (who are confident in prescribing Remicade to pregnant women).

So why are these nurses making me feel like I don’t know what I’m doing? Like I’m doing something wrong? I’m ok with every other ignorant “crunchy mama” telling me to quit the drugs, eat paleo and do yoga–and I appreciate everybody’s (judgement) concern, but honestly I expected nurses to be more (educated) understanding.

When I went in for my Remicade infusion today and told “Nurse Carol” that we are ttc, she said “but you’ll quit when you’re pregnant” and without hesitation I said “No”! And proceeded to fill her in on the details of my decision. I could tell she was a bit embarrassed about opening her big mouth–and she should be.

I admit that I’m pretty pushy with my friends, but even then I don’t advocate things if I can’t back my claims up with data and examples. I certainly don’t push my (medical) opinions on strangers! And knowing what a big decision Remicade is and that doctors (are supposed to) only advocate it when less invasive treatments have failed…knowing that a woman with an overactive immune system would rather risk the unknown and take Remicade, rather than lament the demise of her baby because her own (broken) body attacked her pregnancy…me personally, I would wish her well and keep my f*ing mouth shut. But that’s just me.

I Finally Found the Doctor of My Dreams (and now I’m moving)

Today I had my last appointment with my beloved GI, who I will refer to as Dr. Handsome. I first met Dr. Handsome in April, in the midst of my post-miscarriage health crisis. I had been misguided and bullied by my former GI doc, and I came to Dr. Handsome feeling beat-down, scared, and vulnerable—I really hoped that he would hear me out and see my point-of-view, and empower me to make weighty decisions about my treatment.
When he walked in the room, I was captivated: Tall, athletic build, silver hair, ice blue eyes, nice smile, and a friendly voice (hence the name “Dr. Handsome”). He immediately put me at ease. He listened to me nervously rattle on about my medical history, and he rolled his eyes (appropriately) when I told him about the crazy bullsh*t my former GI was trying to pull. But where he stole my heart, was when he shook my hand and looked me in the eye as he was leaving and said “We’re going to take GOOD CARE of you.” I get all teary-eyed just thinking about it—no doctor has ever said that to me before. I believed him.
Dr. Handsome had suggested Remicade at that first visit, but I was not ready to go to “big gun” meds, as there are risks and once you’re on it you will stay on it for years…most of the time it buys you 2-5 years at most, and then you have to look at other meds or surgery if your Ulcerative Colitis can’t be controlled. I didn’t want to be pregnant on Remicade. I didn’t want to have my colon out. So Dr. Handsome referred me to Cedars Sinai for a second opinion. At first I thought he was just trying to get rid of me because I didn’t want to take his advice, but when I said that to him he chuckled and said “Noooo, I’ve never fired a patient before and you ‘re a sweetheart! I genuinely want you to have the second opinion and Cedars is the best of the best.” WOW. Like, wow…I left his office with a smile. In the meantime, my UC got remarkably worse and I started feeling pretty desperate to get it under control.
After a couple of weeks of enemas that weren’t working and a mostly liquid diet, my patience was wearing thin. Then I learned that I have slightly elevated NK cells (which can affect implantation of an embryo) and I learned that Remicade helps to regulate NK cells. After a lot of prayer and soul-searching, I finally decided it was time to try the Remicade, so I went crawling back to Dr. Handsome and practically begged for it. I told him I just want to get pregnant and have a healthy baby. And he said to me “We are going to take CARE of you, and you are going to get pregnant and have a healthy baby.” I was so relieved, I cried.
I bought Subway for lunch for their whole office (20 people) to say “thank you”. What you may not know, is that doctors used to get lunches provided by the pharmaceutical reps almost daily (I worked for a Neurologist and the whole office got catered lunches at least twice a week). BUT there was a law passed in January whereby doctors can no longer accept these catered lunches from the drug reps. SO, if you are trying to get on your doctors’ good side (and really, you ought to butter-up his medical assistants and office staff because they call the shots) then food goes a long way, especially since this law was passed. Just sayin’.
After that, the office staff and medical assistants rolled out the red carpet for me! Now this was not my motivation and I didn’t expect it, but it is nice to have your calls returned promptly and to hear a bubbly voice that is happy to help you.
Anyhow, the reason I went in today wasn’t just to say goodbye. It was to ask Dr. Handsome how I should plan for the future of my disease (UC). We both agreed that I need to stay on Remicade (and all the other sh*t that I’m on) for now, and that it’s not time for surgery. For me, my goal is to hurry up and have a baby before it gets any worse. And then if it gets worse after I have the baby (inevitably it will) I want to seriously consider surgery. Fun facts about surgery:
1. I would have the J-pouch surgery. First, they remove my colon and fashion a colon out of my small intestines. While it heals, I’d have a colostomy bag. But a couple months after the first surgery, I would have a second surgery to re-attach everything. Presto!
2. After the surgery, I would be considered “disease free”!!! Did you know that Ulcerative Colitis is the only disease that is curable?! It is! Because once you remove the colon, it’s gone. No more meds.
3. I’d have more frequent bowel movements (like 7 per day). I could handle that, I think, if it meant no sickness and no more meds!
Dr. Handsome suggested that his preferred surgeons were at the Mayo Clinic in Scottsdale, AZ. He said I can always call him, and gave me a hug. I also got hugs from his medical assistants. They said come by and visit whenever I’m in town. I wonder if it’s because I brought them cupcakes today? Or maybe it’s the hilariously long and rambling messages I leave for them. In any case, I hate to leave them, but I’m confident that they are there if and when I need them. I feel good now that I have a plan for “what if”. God Bless Dr. Handsome.
***I brought Dr. Handsome and staff generic grocery store cupcakes. Normally (when I’m not in the middle of moving) I would go balls-out and attempt something pinterest-worthy, like the picture below.
WHOOOOO wants a cupcake?!!

Remember, the way to a doctors heart is through his staff, and they way to his staff is through their stomachs

Remember, the way to a doctors heart is through his staff, and the way to his staff is through their stomachs