IVF: The Raw Truth– Episode II, “Injections”

I have decided IVF is somewhat similar to pregnancy. The meds make you bloated, tired, and nauseous. Also, after it’s over you forget just how hard it was and say things like, “Oh, it really wasn’t that bad.” That’s bullshit and anyone who says anything like that is either delusional or lying. I feel like I’ve had the flu for two and a half weeks. I am dehydrated. I get painful muscle cramps and spasms and no amount of potassium or water is helping. Everything hurts and look I like a heroin addict. It’s not easy! I used to think IVF was the cheater’s way out. It is most definitely NOT for the weak!
If you’re doing IVF there is just NO WAY to avoid harsh medications and needles – a lot of them. We tried other fertility treatments for a year before moving to IVF so I lost count of how many times I’ve been stuck with a needle throughout this journey. I’ve given over 20 tubes of blood in the last year, but a nurse drawing labs and stabbing YOURSELF are two totally different things. 
Growing up I was Hypoglycemic, meaning I had chronically low blood sugar. I checked my sugar every day by sticking myself with (basically) a thumbtack to check my sugar. I also worked as a medical clerk and tech for over a decade. I saw minor surgeries, gave injections, and even assisted with epidurals and spinal taps. You would think giving myself a shot would be nothing, but it’s different when you’re doing it to yourself. I know some women have their partners do it, but honestly that sends my anxiety to a whole new level. Trusting someone doesn’t mean you believe they know how to stick you with a needle without killing you. I can feel what’s going on with my body. He can’t. Therefore, I do the shots and he assists. 
I’m hoping I can help others by offering up some lessons I have learned through this process…
BASIC TIPS–

*Open all your supplies ahead of time. You’ll need gauze, bandaids, needles, syringes, alcohol swabs, and the medication(s). If the meds need mixed have them all mixed & drawn up, ready to go, a few minutes before you give the injections. 

*Be sure to bleed the needles to avoid air bubbles. 

*Sometimes holding an ice pack on the area for a minute or two beforehand helps. Ice packs and/or heating pads sometimes help after, too. 

*Once you know which ones hurt the most, do them last. For me, Menopur has been the worst so far but everyone is different. 

*Have someone there to help you. It’s not hard to do it alone, but it definitely helps to have moral support and a helping hand. 

*Ask your clinic for videos on how to do the injections. My clinic has videos on their website. I have them saved to my favorites on my phone browser and I sometimes watch the videos while I am doing my shots. 

*Even if you don’t bleed, use the little round bandaids. They mark where you’ve already given shots so you know where not to stick the next time. I rotate day-to-day from right to left. Once I have done the same side twice, I take the older bandaids off and leave the newer ones on. Right now I have six bandaids marking the shots I have done for the last two days. 


Here is what I can tell you about my experience with the shots so far…

I am not sure which one(s) it is, but I am VERY dehydrated! I drink nothing but water – CONSTANTLY and I’m still thirsty. When they draw labs my veins roll (another sign of dehydration). DRINK AS MUCH WATER AS YOU CAN! The average person is supposed to drink 64 oz of water a day, minimum. I’ve been drinking double that and I’m still kind of dry and sometimes get muscle cramps (Charlie horses). Also (disclaimer) ALL of my injections up through embryo transfer will be Sub-Q/subcutaneous (under the skin), even my trigger shots (HCG/Lupron). Some people will do SOME inner-muscular shots and some sub-Q shots. Your protocol will definitely be at least slightly different from mine so I’ll try not to be too specific. This is just MY experience. Everyone is different. 
FOLLISTIM–

Follistim and Gonal-F are the same thing. No one explained this to me at first and once I found out I felt totally stupid. I’m using Follistim. This is the easiest injection to give of all the ones I have done so far (in my opinion). The needle is very thin and short, and the medication basically draws itself up. You dial a little knob to your dose, do the stick, and then press a button/plunger until the dial goes down to zero. The really cool thing is if there isn’t enough medication in the vial you’re using, the plunger will stop at the remaining dose you need when the vial runs out. You change the cartridge(vial) and needle and just stick and hold the button again until you get zero. 
Now, that’s not to say the medication is the easiest to handle. Follistim is tolerable but it definitely burns. I’ve learned to set it out for 3-4 minutes to let it warm up a bit before I use it. Also, after you bleed the needle (get the little drop at the top of the needle to avoid air bubbles), it helps to shake the drop off before sticking. However, no matter what I do, it still burns for at least 20-30 minutes after I take a Follistim injection. For me the burn spreads all throughout my entire abdomen. Some say Follistim doesn’t bother them at all. Everyone is different. 
CETROTIDE–

I didn’t start Cetrotide until about a week before we expect(ed) the egg retrieval to take place. The hardest thing about Cetrotide is dosing. It comes with a small syringe full of mixing solution, attached to a huge mixing needle. I squirt the solution into a vial of Cetrotide powder, and swirl until mixed. That now-mixed vial is a full dose, but I take a half dose, and the syringe that came with the liquid in it is not marked at all for dosing. I re-cap the mixing needle, remove it from the syringe, and attach it to a new syringe which does have measurements marked. Then I draw up the dose. After the dose is drawn I change to an administration needle, which is pretty small but longer than the Follistim needle), get the air bubbles out of (bleed) the needle, and give the shot. I don’t feel anything at all. It doesn’t seem like the Cetrotide has any immediate side effects. However, 20-30 mins after I give it I usually get a headache and start feeling EXTREMELY tired. My doctor says that happens to some people but it isn’t common. Also, I sometimes get a little red splotch around the injection site, and it itches for a few minutes. 
MENOPUR–

I started taking Menopur one day before I started the Cetrotide. This one has had the worst side effects for me so far. Administration is pretty much identical to Cetrotide- same size needle too. Menopur hurts pretty bad as soon as it goes in, and the pain seems to spread and get worse over a the next 30-60 minutes. I do Menopur injections at night and the burning sometimes keeps me from getting to sleep. I take Tylenol to help ease the burning. It basically feels like my abs and lower back are cramping badly, and I have that scalding hot water on my skin feeling I mentioned in a previous post. The Menopur, for me, hurts bad at injection, for a long time after, and seems to make me feel bloated and crabby. It’s like PMS on steroids. I hate it. I am hoping I never have to use Menopur again, but as is the common theme, everyone is different. 
TRIGGER SHOTS–

We are using a dual trigger – HCG (Novarel) and Lueprolide (Lupron). I did them this morning. They were Sub-Q. In the past I have done only HCG triggers and they were inner-muscular. Honestly, Sub-Q was easier. It burned a lot less and didn’t make me achy after. I had to do it 36 hours before retrieval so I was up at 5am today. I did the shots and went back to bed for an hour before getting up for work. It’s almost two hours later and I feel fine. I didn’t have any of the cycle meds last night (no shots), only an antibiotic. I have to admit I feel pretty good this morning – for the first time in a couple of weeks. Other than a Charlie-horse in my leg when I first woke up I have no body pain, and my headache is barely noticeable. 
Overall, it’s all tolerable, especially if this works. I did walk around feeling like I had the Flu for two weeks, basically, but I lived with it. My belly is bruised, sore, and bloated. I am tired. My whole body aches off and on, and I have a never-ending mild-to-moderate headache. I don’t sleep well, am sometimes nauseous, and I am never comfortable. BUT I am blessed to be able to walk this path. Many cannot. We can BARELY afford it, even with insurance, and we also have help from family and friends. So, I will not complain. I want people to know what it’s like, but I never want my future child to think it wasn’t worth it. It is worth it in every single way. If we had the money to do 100 cycles we would. We would just keep on trying until it works, but hopefully we don’t have to even worry about that. With every shot, blood test, and ultrasound I feel like we are one step closer, and I am thankful for every single step!

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IVF: The Raw Truth – Episode I

I don’t have all the answers. Every fertility journey is different so I don’t claim to know exactly what you might be going through, but I know there is someone out there who has no idea what to expect, or someone who just needs to know s/he is not alone. We had NO IDEA what to expect, and our first doctor wasn’t very good at filling us in. Surely I am not the only one, so I thought chronicling our journey might help someone else. Maybe it will help me, too…

After we found a new doctor and decided to move forward with IVF, we were told to get our finances in order and start taking prenatal vitamins. It felt kind of… un-exciting. It does not happen very quickly like you think maybe it should. You try getting pregnant for YEARS before you resort to IVF so a few weeks/months of waiting for IVF to start really shouldn’t seem that long, but it does. It took a few weeks to get our money together (we had already been saving) and then we called to see how soon we could start. They got us in two months after our initial consultation. (Note: Every clinic is different.)
MONEY DOES MATTER-

After we chose our protocol, I was told the clinic financial coordinator would get with us on how much our prescribed protocol would cost. WAIT! Let me say something here. First– Since our state mandates insurance pay for SOME fertility treatments we had to guess at what all we would pay out of pocket. They had us sign a payment agreement. Second– there is NO WAY the biller at your clinic can tell you exactly how much their services will cost you out of pocket until your insurance is actually billed. Your insurance really decides how much you pay. Also, you have to account for travel, labs or other third party services, and MEDS! The meds are not cheap and most insurances will likely refuse to cover at least one (or all) of your medications. So, what the biller at your clinic tells you is definitely NOT all you will pay. It’s just the tip of the iceberg! Even paying out of pocket there are extra little costs that pop up. Just prepare for it.

Our clinic offers some services for which they don’t even bother billing insurance, like the anesthesia used during egg retrieval, for example. It’s $500. They use a special scope to monitor the embryos for five days following fertilization. It’s called an embryoscope (trademark: Dr. Peter Ahlering/MCRM Fertility). It’s not even been around long enough to be billable to insurance. That’s $800. You can see how the costs add up pretty quickly. Most clinics also require a deposit. At least one small portion of that deposit will most certainly be kept by the clinic. We were lucky. Our insurance out-of-pocket (OOP) was only a few hundred dollars from being met so the clinic waived our deposit, as long as we agreed to pay for all of our clinical services up front, and another $500 to the anesthesiologist a couple of days before retrieval. Most couples with insurance would have to pay twice what we did. Have I mentioned how awesome our clinic is? Well, they’re fabulous!!! (Note: All clinics are different. See a common theme here?)
MEDS, MEDS, & more MEDS –

The cost of meds has really been the biggest shock for me. One cycle for us is about $850 in copays for medications. If we have to do more than one cycle it will be a little less next cycle, as long as we get it in before my deductible and out of pocket reset in January. Note: If you can somehow meet your insurance OOP before starting fertility treatments (particularly IVF) you need to try to do that!! When my OOP is met my med bill will be next to nothing compared to what we paid this cycle! As soon as you know what meds your doctor wants to use, call the insurance or pharmacy (if you’re self-pay) and make SURE how much it will cost you. (Tip: Be sure to ask the doctor or nurse if you will need multiple scripts for the same medication. — I needed 3 scripts for Follistim for one cycle.)
Curious as to some of the meds your doctor MIGHT prescribe? Here is a list of the ones I know about. There are lots of other ones, but this could give you an idea. Keep in mind each of these probably goes by half a dozen different brand names…
*Gonal F or Follistim

*Chlomid

*Letrozol

*Lupron or Luprolide

*Cetrotide or Cetrorelix

*Menopur

*Progesterone capsules, suppositories, or injections (Progesterone in Oil/PIO).

*HCG/Novarel

*Antibiotics (mine is Z-pak / Zithromax, AzaSite, and Zmax)

*Birth Control (maybe)

*Progestin

*Endometrin
We’re well into week one of our first IVF cycle. I feel like it’s kind of the downhill slope and I can finally breathe a little. We’ve had SO MUCH trouble getting my meds from Prime Specialty Pharmacy!!! It took us a month to navigate that shit storm! Now that we have the meds and the only thing we really have to pay for is the anesthesia at retrieval I feel a bit of relief. I’m cautious but more relaxed.

 

I don’t know anyone who has considered or tried IVF who truly knew what they were getting into in the beginning. You read everything you can get your hands on and ask all the questions and you still find yourself completely overwhelmed at some point in the journey – maybe multiple points in your journey. It’s almost like I don’t even know what questions to ask, much less the answers, and quite frankly most medical professionals aren’t very good at making sure their patients are informed enough TO know what questions to ask. In my opinion these OB’s, RE’s, and embryologists should be educating their patients so much they are leaving very few questions in the first place. (Just my two cents.) Given the lack of education, the cost, and the emotional havoc infertility inflicts on everyone, at least one emotional breakdown is inevitable, usually more than one – many in fact. Just trust me! Lucky for us our new doctor and MCRM are amazing and we feel much more secure than we did prior to April 26th this year.
Birth Control Pills (BCP’s) —

My baseline ultrasound and labs were done last Thursday, 7/13/17. That’s considered “Day 1” by my doctor. I was on birth control (BCP) for a few weeks prior so as to get me on the cycle days he wanted. They select about 15-20 couples each month for IVF and every woman in each cycle will be on their period at the same time. I’ve said this before, but I think he must be NUTS to want 15 women on the rag all at once! I feel sorry for the nurses/clinical coordinators. I know mine has spoken to me every single weekday since I started the BCP’s. This journey is HARD and Aunt Flo is a bitch in my experience. Add the insane stress that comes along with all things IVF and it’s a recipe for a nuclear meltdown! Oh! If you go on birth control don’t think it will mean you get a break from Aunt Flo! I have been off the pill for 11 years. I went on the BCP’s on Day 3 of my period in June and was on them for about 5 weeks. I spotted the ENTIRE TIME! 😡 Talk about pissed! I thought we could have a sexual free-for-all. I was bloated and oozing. Who would want to have sex with THAT???
INJECTIONS–


I’ve heard all different stories about the Follistim. One consistent report is they burn. They don’t just sting. They burn like you splashed boiling water on your skin, and for me the burning spreads all throughout my abdomen. I’ve done 5 shots so far. BUT, you do get used to it. Honestly, they’re tolerable for me. I just did one about an hour ago and I don’t feel terrible, just a little uncomfortable. It’s like a dull burn.
We go tomorrow for our first ultrasound and labs since we started the injections. I’m nervous, but I’m just holding onto hope. It’s all I can do. What choice do I have? Like I said, I don’t have all the answers, but here is some info that might help you out…
This is what I’ve learned so far (Tips and Tricks for staying – somewhat – sane):

* Ask your doctor or nurse for a list of every single medication you could possibly need for your treatment!!! — When we started this I was told to call my insurance to see about how much it would cost for medication. I was told to ask about progesterone, Follistim/Gonal F, HCG/Novarel, and Cetrotide. It turned out I also needed Lupron, Menopur, and a Z-pak. Also, I needed 3 separate scripts for the Follistim (so 3 separate copays). None of this was explained to me until after I got the call from Prime Pharmacy to setup delivery and they told me I owed them $900 in copays – which was wrong, by the way, because Prime is stupid and doesn’t understand what a “met” Out is Pocket is! This brings me to my next point…

* Dealing with the insurance will most likely be one of the most frustrating parts of this entire journey! — Seriously folks, if I was rich I would pay for this out-of-pocket just to avoid dealing with my insurance! Every person I speak to tells me something different, and the pharmacy apparently does not know the phone number to my insurance company because they have failed many times to call them when they should have. Thank God for my clinical coordinator at the doctor’s office because she is a saint! I don’t know any other nurse on this planet who has spent the number of hours on the phone with an insurance company that my nurse has. If you are lucky, you will have help from your clinic like we have had. If not, prepare to spend a lot of time on the phone with your insurance. And you should expect a lot of stress… and cussing. I hope not, but you should be prepared.

* Don’t do anything you don’t want to, but don’t make medical decisions based on money. You can make more money. You can’t make more eggs, and you can’t avoid regret if you don’t follow your gut. DON’T ignore your gut!
This post is crazy long, but it should get you started. Feel free to reach out. This stuff is NOT easy!!!! Until next time…

Follistim, Gonal-F, and Insulin? – OH MY! (Updated)

I knew IVF required more than medication-assisted intercourse, but I didn’t realize I would encounter a preverbal buffet of medications and supplies! (And my insurance lied and said it was all covered, too!) I was told I would pay McDonald’s prices and got a bill for Ruth’s Crist! 

I’m so confused! I don’t even know what half this shit is for! Here is the list of prescriptions (“scripts”) sent to my pharmacy…


When they told me to call my pharmacy to ask about drug coverage they didn’t tell me to ask about anything other than HCG, FSH, and Progesterone. Wait! There’s more!


In case you’re wondering, yes! I am pretty sure that says Insulin near the bottom there. I’m not diabetic. Wtf??? 😳 (Update: I think it’s just an insulin syringe, not actual insulin.) The picture cut off the Sharps container, which I told them I already have from before, but I guess they forgot. I have two, actually, so I guess I’ll just tell the pharmacy when they call? 

Now, I took out that whole last s cation from before because it is all irrelevant now…

So, I got a call from my specialty pharmacy telling me I owed them roughly $680 before they would ship all that crap (pictured). I argued back that my out of pocket (OOP) for the entire year is only $462 away from being met so they need to check again. They told me to call my insurance. 

I call BCBS of Illinois and I get this Christa bitch who laughs at me and tells me the Lupron isn’t covered because it’s a compound and is $270, the progesterone isn’t covered the way it was ordered and it’s about $100. “To top it off” (she chuckled) “since the [OOP] isn’t met and non-covered items don’t count toward [OOP] you have to pay a $150 copay each for the FSH and HCG. That’s a grand total of roughy $675 for just the meds, when my OOP is {this} close to being met!!! I all but told Little Miss Chuckles to go fuck herself. 

My doctor has this amazing setup where he assigns you to your own nurse, coordinator, biller, and patient support specialist. You share them with other patients, but it’s nice knowing I have a “team”, and I can communicate with each of them directly through this app called eIVF_Mobile. The messaging feature has its quirks, but I work every day. I can’t spend all day on the phone. I have poor people relying on me to save the day! 

So, I sent my nurse (Jen F. – there are 3 or 4 Jen’s) a frantic message. I’m pretty sure the wetness from my tears could be felt through the computer screen! I apologized for freaking out, but explained that NO ONE from the clinic told me I even needed Lupron, or whatever the fuck Cetrotide is, or ever mentioned any of the meds would be compounds. I mentioned that I knew all along compounds weren’t covered, and that the FSH needs a prior authorization, or a step-down or medical statement of necessity (SMN) for approval. I reported that if someone had given adequate information ahead of time we never would have signed a payment agreement and would never EVER have given them almost $1500 up front before knowing the cost of meds. And then I apologized AGAIN. (I see a lot of apologies in my future.)

Now, it does seem like there were some missteps here – on everyone’s part- mine, the clinic, the pharmacies (I have two), and the insurance (especially Miss Chuckles), but I THINK it is resolved. I got an email from the nurse saying they found the Lupron in a “covered” form – a kit. I have no clue how much this will cost, but “covered” sounds good. Also, she got the pharmacy to get me a progesterone that’s only $15 (not $100). If nothing else we have saved about $85, and my OOP is DEFINITELY met after we pay for these meds!!!

If I had $5.00

If I had $5.00 for every time someone said something hurtful to me about my infertility I could pay for the IVF and have some money left over for baby stuff (or a vacation if the IVF failed). I would start the collection process with my mother, who told me I am too old and that my bf doesn’t want a baby, once I finally gathered the courage to tell her. Yeah. I would charge her double. 
We didn’t tell people about the fertility treatments at first. For starters, it’s no one’s MF’ing business, but also, I wasn’t prepared for the pity, the ignorant comments, or the negative feedback. Some people mean well but just dig the knife in deeper and others, well, they’re just fucking rude. My mother was rude, and she made assumptions about my relationship with my bf that she had absolutely no right to make.  So, my fears were realized, and then I noticed something. It didn’t hurt as much as I thought it would. And if it didn’t hurt that bad coming from my own mother it likely wouldn’t hurt much at all coming from anyone else. It’s like getting your first tattoo and going straight for the face then realizing if you can get a tattoo on your face you can probably handle getting tattooed anywhere!
I can’t get $5.00 from every ignoramous who doesn’t know how to speak to infertile people. However, I CAN get $5.00 for every item sold in my fundraiser! This amazing chick that sells Lularoe has walked this path of infertility and heartache before me and she kindly offered to throw me an online pop-up fundraiser. We get $5.00 for every piece sold, and she only charges $5.00 shipping (in the continental US) no matter how many pieces someone orders. It won’t make up for every hurtful thing anyone has ever said to me, but it might offset some of the cost because this IVF stuff is NOT cheap!   Here is the link to the fundraiser: https://www.facebook.com/events/210079476178958/?ti=icl
Yes, I shamelessly plugged my fundraiser and whined about my insensitive, toxic mother in the same post, but let’s look at what really happened here… We finally told the world what we are doing, after more than a year of struggling on our own. Yes. I am a little worried about what some of our loved ones might say, but I am also glad to finally know we have some support. Every person who supports us erases two who don’t. Thanks for reading!

-CC

Sick…

9/16/17– UPDATE (sort of): 

G does not have leukemia. We don’t know exactly what IS wrong, but we do know (for now) it is not terminal. He has been diagnosed with ANA (anti-nuclear antibodies). Basically, G’s cells are attacking his own tissues, particularly his muscle tissues. He can’t build muscle to support his body structure and growth. He grows but his muscles don’t grow with him, and he can’t maintain or gain weight. He is so, so thin. It’s incredibly sad to watch. Of course they are concerned about his heart because it’s a muscle and muscle is the main tissue affected. He has been through more tests than any of my clients who all have permanent debilitating disabilities. He has been such a trooper through all of it, and we are talking 100’s of tubes of blood at this point. He did an EKG and stress test a couple of weeks ago. My mom said he got through it like it was nothing. 
Mom has been going along to all of his appointments, per his request. My sister hates her going because Mom is a nurse and tends to “hijack” the appointments. It really shouldn’t matter what my sister wants. Her very sick son wants his Nana with him as he goes through the scariest thing he will likely ever face in his life. There is nothing wrong with that. She needs to suck it up for her son, but alas, she doesn’t. This thing with G has definitely increased the strain on the relationship between my mother and sister, which wasn’t good to begin with. 

To understand their relationship you first need to understand something about my mother. Mom has OCD. A lot of people think that means she is a “neat freak” or germophobe. Not quite. In fact, hoarders have a form of OCD. You can do your own research on what Obsessive Cumpulsive Disorder really is, but let me say this – if you are the subject of one of my mother’s obsessions, you’re just screwed. That’s part of why I keep my distance. She just can’t deal with everything not having a “place”, and things must be “clean” – to her standards.  The “place” has to be specific but not tidy.  Her dishes and laundry are always done and put away. Her house is always clean, but it also harbors little cubbies of clutter, piles of “order”, organized chaos. You get my point. She’s not gross, just weird. My sister, however, can be a little gross. I hate saying that but it’s kind of true.  This, of course, makes my mom absolutely nuts. In response, my mom tries to guilt and bully my sister into cleaning her house – not just cleaning it but cleaning it to “Mom standards”.  And OF COURSE this means everything has its PLACE!!! And what batter way to be sure it gets done than to “help” my sister do it. By help, I mean show up unannounced and start bulldozing through your daughter’s house and shouting at her to help you, all the while telling her what a terrible mother she is. Do you understand why I live two towns away?
Side note: I hope you don’t think my family is some white trash, redneck, country idiots who belong on Dr. Phil. My mom (and maybe my sister too) has a mental illness. She can’t help it, and my sister can’t cope with it. 
Well, my sister finally had enough. She kicked my mom out of her house and stopped asking her to babysit. She had her boss change her work schedule so that Mom never needs to watch the boys for her, and she changed the locks on the house so Mom’s key no longer works. When Mom did show up one day and wouldn’t leave until my sister allowed her to “help” clean, my sister threatened to call the police and have her removed. My mom feels like she has lost her grandchildren, and my sister has most certainly lost her mother – whatever relationship they had left. But honestly, they’re both adults and I don’t give a shit how this affects them – not near as much as I know it affects G. Thank God his little brother is too young to understand, but G needs my mom. He wants her to be there for him, and their juvenile and irrational behavior is causing him to go without the support he needs. That’s the real tragedy here. I have tried mediating but it causes too much stress for me, and I am 9 weeks pregnant. I can’t afford to lose my only chance at having my own family because two adults can’t get their shit together for a child who desperately needs them to grow up. 

So, my dirty secret is out. My family is nuts, and dysfunctional. I moved away because I can’t deal, and at a time when my nephews and I REALLY need my mom, she’s too broken. She’s broken by the OCD, and by my sister’s inability to understand and accept her illness. Please send us some good vibes – especially G, his little brother, and my little Sweet Pea. 
Original Post:

I don’t talk about my family much, but there is one family member who is my absolute favorite soul, my nephew, G. I know all parents think their kid is the most unique, the cutest, the sweetest, etc. People think it’s weird I am so obsessed with G, but I absolutely adore him. I would help raise him and spend time with him every day for the rest of my life if I could. Our bond is special, and I can’t imagine anything bad (truly bad) happening to him. 

My family is complicated and it would take too much blogspace to bore you with it. However, to understand my relationship with G you probably need to know this… G spent the majority of his first 3 years living with me and my ex-husband. He called my in-laws “Grandma” and “Grandpa”. I helped raise him. I continued to care for him 3-4 days a week after my divorce, until the grandmother I lived with became terminally ill and eventually passed away. I moved two towns away and I only see G a few times a month now. It breaks my heart not seeing him. 

My mom called last night and told me G is sick. Honestly, that’s not unusual. He was born with GERD and was a sick baby. He also has Asperger’s Spectrum Disorder. (Basically, he is socially awkward and is really good at music and art.) My point is he always has some kind of ailment. This is not a cold or the flu. It’s something more. G has always been pretty pale, but lately his skin is almost transparent. He’s had a lot of stomach trouble. He doesn’t sleep much and he’s always tired. He’s cranky and whiny and he’s had some bruises that were taking a long time to heal. Off to the children’s hospital for labs. It took 6 weeks to get the results. As it turns out, he likely has one (or more) serious illness from a list of about 10 things that could be wrong with him. Most of them are treatable, and most likely survivable, (but all can be terminal). That doesn’t make it feel any better, especially when one of them is luekemia. 

I’m terrified. I’m angry, sad, and feeling quite helpless. I can’t imagine how my sister feels. I can’t understand why this is happening to a nine-year-old, particularly the one nine-year-old I love more than any human being on this planet. I spent all night crying. I cried myself to sleep. I keep praying over and over, “Please, not him. He can’t be sick.”

IVF: Hurry Up & Wait (more than 2 weeks)

I thought IVF was supposed to be the fast food version of getting pregnant. I was SO WRONG!
We finally have the right doctor, with the right staff, and all the stars are lining up for us. So, why am I not happy? Dr. A assigned us to a “coordinator” to guide us through this IVF stuff, which is great. No one bothered to guide us anywhere at the (old) RE’s office, except to the checkout window where we could pay our bill. I’m thrilled that we have an entire “team” – a coordinator, patient support specialist, nurse, embryologist, a billing specialist, and of course Dr. A – the best reproductive doctor in the Midwest. (Not one of the best – THE best.) 
We are signed up for the July cycle (which really means August), and now we just wait for my June period to start. With a whole team and step-by-step instructions, not to mention a minimum 50% chance of conception in the first try, I should be feeling pretty great. I don’t know why I feel so shitty. 
My partner got his semen analysis back several days ago, a few days before Mother’s Day. It was perfect. One less hurdle for us to climb, and he was ecstatic. I thought I would be too, but I cried instead. It was just a glaring reminder that the reason we are doing all of this – the reason we have suffered so much – is me. It’s my fault. Its been my defect all along, and continues to be me. I am broken, and I FEEL broken. It’s defeating and lonely. 
So, we got the green light to move forward and Dr. A said we could probably transfer in July, or that’s what I thought he said. He told me all we needed to do was confirm the plan with the billing department and we would move forward from there. I called the billing director. She said IF we could pay all our copays, meds, and out-of-pocket (OOP) expenses upfront she would forego the $2,000 deposit for us, since my deductible is met and my OOP is only a few hundred bucks from being met. GREAT! That’s more money to save toward maternity leave! Then, she said IF we did all of that we would be “squeezed in” for the July cycle and transfer in August. I thought Dr. A had said July transfer (not cycle), so I said something to the billing director. She said the June cycle for July transfer was already full. Ok. I am sure the doctor doesn’t mess with clerical BS so I let that one slide. July cycle then. Sigh… 
Then I learned this: The clinic we go to takes about 20 women per month for IVF cycling. Everyone placed in a particular cycle will go on birth control pills the month before and all 20 of them will have a period at the same time. (First of all, 20 women on their period at-the-same-time!!!) Also, that period will be during the second-to-last week of the month, not the beginning of the month. Therefore, your transfer doesn’t actually happen until the first week of the following month. (This is why the June cycle would have meant a July transfer (early July). Being on the July cycle means two months before we transfer (the first week of August), which happens to be our anniversary week. That’s all fine, except it’s not. 
We bought tickets MONTHS ago for a concert that we will most likely have to miss, scheduled for the day before our anniversary. If we transfer on/before August 1st we will have to skip the concert because I’ll be in bed rest for at least a day or two. We won’t know our exact transfer date until about a week before the transfer, however we do know it will be sometime between Aug. 1-5. 
 What this all means is we are waiting twice as long as we originally thought to cycle, and a week longer than THAT to transfer, AND we might lose a LOT of money (a lot to me anyway) to give up tickets to a concert I have wanted to see for about a decade. Not to mention I have to go through THREE periods (May, June, & July) before we transfer. Talk about BS!
Before you get all judgey, please know that I am totally aware of how childish and selfish I sound right now. I’ve waited 11 years to get to this place in my life and here I am whining over a few extra weeks and a goddamned concert. It’s dumb, and pathetic, and I feel like a total shit, which of course makes me feel even worse. I just can’t help it. I can’t help but be sad that we aren’t transferring in June like we originally hoped. (Even July would have been nice.) I’m scared I am jinxing us and none of our embryos will be worth keeping in July and it will be all my fault because I’m being a whiny little bitch. And even though it’s so spoiled of me to complain, I am sad our anniversary plans might be screwed and one of my bucket list wishes may never come true because I might be on bed rest the day of the concert. I’m just sad, and scared, and waiting, waiting, waiting. I have waited 11 YEARS!!! Now, I have to wait two more months, and it’s making me crazy – just absolutely nuts. 
I feel really crappy about myself, truth be told. I feel bad about being infertile, about being selfish and whiny, and sad when I should be optimistic. I am just feeling shitty, and it sucks. I should be thankful. I should be happy. I shouldn’t be sad, but I just can’t help it. I am scared, and I feel kind of alone, and I have let this totally consume my life. I just don’t know how to feel any other way. I hope our first cycle works (even though our chances are kind of slim – 50%). I mean, our chances are 25% better than anyone trying naturally so there’s that. I just hope this works and that it will make me feel better. I think it’s about the only thing that will make me feel better at this point. Nothing else will fix me. I guess getting my hopes up for a June or July transfer didn’t help. Sigh… I guess I’ll just shut up and wait now. What choice do I have?

A TTC Belly Flop: Telling the family, sort of

I can’t sleep. Perhaps it’s because I finally attempted (& failed) to tell our family we are TTC, but my mother doesn’t support our decision.  It could simply be the killer cramps I am having, or the migraine I am just barely recovering from. OR, maybe it’s all of the above and more. 
We decided a long time ago that our family did not need to be involved in our TTC journey, at least not heavily, and certainly not early on. His reasoning is that it’s none of their goddamn business, and I guess I feel that way a little too. I just don’t want to hear their opinions about it. I’m 36 and he is 40. A lot of people believe we are too old to start a family. Some might believe we aren’t financially prepared, or maybe even that we aren’t cut out to be parents. 
Since we are starting IVF next month I wanted to tell my mom. We don’t have the best relationship but this process is extremely emotional and I thought it would help to have her support. It took a LOT of courage for me to bring it up with her. I tried to approach the subject gently by saying that we have been seeing a specialist just to explore the possibility of having a baby. She looked me dead in the eye and told me I am too old, and she said she doesn’t even think my boyfriend wants a baby, as if she knows anything about what he would want. To really make it clear how she feels she said it must be nice to have insurance and to be able to afford “unnecessary treatments”. She claims she can’t even afford insurance or get a Pap smear when she has been a nurse for over 30 years. Just like that, in a way only my mother can, she made me feel like shit and turned my situation into something all about her in one fell swoop. 
Here is the problem with ALL of that bullshit… A) I don’t see what we are doing as “unnecessary”. That is an incredibly insensitive and subjective opinion, and I CAN’T “afford” it, by the way. We are making MAJOR sacrifices to “afford” it! B) My employer pays my insurance and if she wanted that for herself she should have found a job where they would do the same for her. C) There are lots of doctors who will offer a discount to someone without insurance (like her) so she can get her annual exams, and she makes over $100k/year. There’s no reason whatsoever she can’t afford it. She CHOOSES to forego her annual exams because she CHOOSES to spend her money elsewhere, and she DOESN’T make the sacrifice to pay for it; Therefore, her Pap smear is not as important to her as having a baby is to me! SO THERE!!!… I didn’t say all of that to her. I wanted to, but I guess a small part of me prays she could still possibly support me, perhaps if we can have a baby she will see it was all worth it. Maybe she could even somehow be happy for me someday. If none of that, maybe I can prove her wrong. As spiteful as it may seem, I think living my life the way I want despite her nasty, hateful, insensitive position would be far more rewarding than having her support. 
There are just so many things that go through my head – sometimes hundreds of times a day… What if we run out of money? What if (God forbid) this famous doctor can’t get us preggers – even though he boasts a 90% success rate? How many cycles could it take? How will I tell the rest of my family? How will they react? What about HIS family? They’re SO different from mine, and that is somehow a bad thing, maybe, sort of… What if my mom is right? What if I am a shitty parent? What if I have another miscarriage? What if…
It would be REALLY REALLY GREAT to be able to go to my mother and tell her all of this, ask her what she thinks, and have her hug me and say it will be alright. It would be so wonderful to be able to trust my mother, or sister, or even my dad with my feelings – my deepest, most vulnerable feelings, but I can’t. It’s incredibly hurtful. We truly are on our own. It is scary, and frustrating, and lonely. 
So on nights like tonight, when I lie here feeling as if my insides are getting ripped out and am unable to stay still because I cannot get comfortable, and all the thoughts torture me… all I can do is hope and beg the universe for a few hours of sleep and relief. I need to go to work tomorrow. I can’t afford to miss work for my period when I need to be earning money for those “affordable” and “unnecessary” fertility treatments. I need to be saving my sick days for a possible maternity leave. I need NOT to be stressing over people who can’t be supportive. Extra stress just makes getting and staying pregnant even HARDER!!! It’s just so… consuming. 
P.S. – PLEASE excuse the pity party. Hopefully getting it all out will help me get some sleep. Thank you for taking the time to read.