Finding (and Maintaining) Hope… After Loss. 

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Finding (and Maintaining) Hope… After Loss.  

I have been struggling to find words lately. 

Everything that comes into my mind is riddled with doubt and anxiety. 

Infertility changes you… I’ve touched on this specific topic before, but it bares repeating. 

With the decent developments in my story, it has changed how I approach the world and my day to day life.  

I am pregnant. I am now 7 weeks.  

5-6 weeks is when I had my full MC this time last year. I was literally still grieving the loss this time last year… After my old obgyn had refused to see me when I called about pain that led to severe bleeding. Before they actually saw me and had given me very little to go on in terms of hope. Before I had 2 more chemical losses, so faint, almost not there at all, but still heartbreaking when they left me.

Before I went to a fertility specialist. Before I found out I had stage 4 severe endo and low ovarion reserve. Before surgery. Before I healed. Before our first round of IVF. Before I had one more chemical losses, (a fresh transfer after our first round of IVF). Before PGS found out more then half of the embryos we had frozen were abnormal, leaving us with only 2 heathy embryos. Before the FET cycle started. 

And now. I’m pregnant. Pregnant after the FET. And justifiably scared. Scared of every twinge. Every pain. Every bowel movement. Every step I have to walk up. 

Every bit of moisture in my pants and instantly I am thinking “This is it!” And then there is nothing… Thankfully. A moment of relief.  

I am frightened. I keep repeating in my head: “Its only 10%! It’s only 10% after PGS of a loss. Only 10%.” So low. But It’s not enough for the doubts in my mind. 

I thought seeing it at the first ultrasound (week 5) would have been enough… It wasn’t. 6 week ultrasound and I cried with my favorite clinician before she even put the probe in. I was afraid it would be gone again. And then I cried seeing it’s tiny heartbeat show up right away. A little swirly flash on the screen like it was saying “Look! Mom! I’m alive! Relax!”

As I sat there crying the clinician told me “Today you need to be happy. Don’t worry. Be happy all day today.” And I cried some more with happiness, still tinged with fear.  

I frequently put my hand on my already extremely (and stupidly) bloated stomach and whisper “Don’t leave me little one. I saw your tiny heart beat on the monitor. So tiny and flashing light. Please grow healthy and strong for mommy.” 

I constantly ask my husband “Everything is alright? They are alright?” And he has to reassure me. The other day we were in the middle of eating watermelon and I blurted out: “Everything is alright? The baby isn’t dead inside of me?”

The poor man damn near dropped his fork he was so shocked. Then I had a mini anxiety attack, which involves crying and laughing like a lunatic while my husband hugged me.  

I am afraid. So afraid. I wonder if I will be fearful the whole pregnancy. I’m afraid to be too happy. Afraid to be “too sure.”  

I watch other pregnant women walk past me, with no cares. Here I am, waiting on my rainbow baby. Fearful every waking moment.  

Infertility changes you. Especially with previous losses. You live in fear. Fear even with happy news. I am so happy and so afraid.  

I get an ultrasound every week, and I seem to start panicking about 3-4 days after for the next one. So I am panicky now that my next one is on the 5th. At 12 weeks I go on to a normal OBGYN and I won’t get weekly ultrasounds anymore. Will I still be a basket case at week 12? Will I survive until the next ultrasound without turning into a lunatic? Or do I need to buy a heart monitor to listen whenever I start to panic. 

Soon I need to make a decision about CVS. Do I do it? Or will I freak out even more about a MC? It’s just a precaution after the PGS in case they missed something. Even though the chance of MC is so low… I am so afraid of it. So afraid. I will have to discuss this with the doctors before making a decision.  

I don’t mean to sound ungrateful, but I am so alone in this fear. People who haven’t had a loss don’t understand what it’s like to be so incredibly afraid. I should be happy, not so afraid.  

How do you find/maintain hope after a loss?

The “Two Week Wait.”

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The “Two Week Wait…”

Collectively the worst experience for any women dealing with infertility. 

Last transfer I was hopeful. This time I feel… Discouraged. This whole protocol I’ve felt down. Just sad, and it makes me angry and confused.

If this one doesn’t take we’ve resolved to stop, and do another round of IVF to get more eggs before doing another FET. That’s frightening in an of itself. We have to put everything back on hold and start back over again. I know there are so many women who have done this… And I feel your sadness as if it were my own, even though it’s not my reality yet.

I guess it’s all just fear. I am afraid of a negative result. Or another chemical loss.

It means I also walk around obsessing over every symptom.

I’ve had a significant amount of cramping. Not full blown period cramping… But annoying discomfort. Also I feel STIFF inside. I also seem to have excessive moisture… Not full blow discharge though. I’m also waking up covered in sweat… But that’s sorta been happening since I started the progesterone. My breasts are mildly sore. When I was pregnant before my breasts were sore too. My full MC my breast swelled up like balloons almost instantly.

But this isn’t hope in my heart. It’s heartbreak. Fearful of a loss. We only have 2 embryos. There is only one left in the freezer. 

I’ve done everything I can do you little one. I’ve scraped up my insides. I’ve prepped you. I’ve liberated you from my ovaries. I’ve fertilized you. I’ve tested and froze you. I’ve prepped my body for you. I’ve defrosted you and put you back in. It’s your job now. It’s up to you. 

IVF – Dream Orgasms

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This is a thing. Totally a thing that happens with IVF transfers.

My last transfer (fresh) they handed me a paper with instructions, one of which was specifically “NO ORGASMS!” 

(Yes, all caps.)  

At the time I was thinking “NO PROBLEM…” I was still tender from my surgery the month before and the egg retrieval. (Not to mention my ovaries were still gigantic and squishing against my uterus with all their might!). I was not super in the mood for sex… Or so I thought.

Little did I know my body had different plans when I woke up the next morning in the throws of pleasure from my dream. Good job Brain!!!! I instantly freaked about it… But after a bit of research I found out other women have had this happen too. 

I ended up with a chemical loss 2 weeks later, but not because of the orgasm. (Suspected chromosomal abnormalities with how the rest of my PGS testing turned out on the remaining embryos.)

Fast forward: Yesterday we had the Frozen Embryo Transfer of a normal chromosomal embryo and wonder of wonders, last night I woke up yet again, with an orgasm. …And a really good one too….

Luckily, yesterday I specifically asked the nurse and doctor about it. Surprise surprise they actually removed the “NO ORGASMS” script from my instructions altogether, just told me not to put anything in my vagina… And soothed my worries about the dream orgasm situation. Not to worry.

This morning, after the impromptu orgasm, despite the reassurance of my doctor… I did some more online research of other women doing IVF and apparently it’s pretty common with transfers. Maybe it has something to do with the cervix being opened? Or maybe it’s just the progesterone injections? Or perhaps the body just recognized the embryo inside and it’s saying “Hey! I’m pregnant but I didn’t get to enjoy this one!!! Well screw you! Gonna do it anyway!” (They may be helping things along…)

Who knows? What I do know is it’s common. A little weird, but common.

There is literally nothing you can do. My libido was high during STIM, but “shut down” after ER… And then not so much during the Lurpon protocol. However, I suspected this could be a problem again and tried to “tire myself out” in the weeks leading up. Especially if I was on a strict “no orgasms” policy again. Well, that clearly worked. Not regretting it, just saying you can’t win this war. Your brain and body are going to do whatever they want. 

My words of wisdom: Don’t freak out if this happens to you.

My BUTT HURTS!

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At what point do you get used to progesterone injections? 

My docs want me to do it for 12 weeks… (Not including this preparatory stage.)  I did them before for 4 weeks with my fresh transfer, but I guess the mind is truly a miraculous thing when it comes to pain, because I seem to have forgotten how dreadful these things were. 

It’s impressive because my tolerance for pain is ridiculously high. I was living with incredible pain from my endo but it had become so common place I learned to “deal.” So when my doctor went in for the endo surgery she was shocked to find stage 4 severe. She said to my husband right after my 4 hour surgery “I don’t know how she was living with this much pain.” 

So the fact that these injections hurt this much means they are absolutely 100% dreadful. I know women say they’ve been brought to tears by them, and I’m not there, but they hurt all day. That isn’t even an exaggeration. 

Even when I stopped the injections after my chemical loss, with the fresh transfer, I had lumps in my butt for well over a month. The discomfort seemed unending!!!! 

Now that I’m back at square one with these, I can see what people push for the suppositories… But they don’t want me to use them until at least 9 weeks. So why not just go for broke? 

But SWEET MERCIFUL LORD!!! There has to be a better way!

To Shave? Or Not To Shave?

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To shave or not to shave?

The untold story of infertility… 

I have super sensitive skin and I’m a fan of completely no hair around my vulva. (Preference is preference.) 

Ultimately the sensitive skin presents challenges. It seems that no matter what I do I end up with razor burn 2-3 days after… And I’ve tried everything. Literally everything to avoid this… (Including hemorrhoid witch hazel wipes, which are the best bet). 

Anyways… Razor burn is just about as attractive as having a full bush in the bedroom. Plus, I feel weird in both cases. 

So in a completely normal space of time I go completely bare and then let it grow out ever so slightly (rinse repeat).  

However, when your told NOT TO HAVS SEX AT ALL during IVF your less inclined to shave until it becomes a necessity. 
Though I don’t enjoy feeling like a wolverine… It’s just with everything going on you sometimes feel like “fuck it…” There is nothing sexy about IVF. 

And when you have to follow the insane sensitive skin routine I do, far less inclined to give a shit about it. 
So I try to walk the line between “OMG” and “Yey!”

This week was a little too “much” for me, I’ll admit, but hey, it was just the ultrasound.  

Knowing my FET is next week I decided to postpone until Saturday so it had a little time to spazz out with the burn and a small amount of hair to grow back by transfer time 
I may be partial but I think I have a relatively attractive vulva/vagina… As far as vulva/vagina’s go. As a general rule I think reproductive organs are pretty ugly… Useful. But ugly. I also know I’m all around “small” and they have to go out of their way to find a small speculum for me… Which is funny because one day during my mock transfer they had to use the large speculum for one woman, and the small one for me within the space of a few hours. My point there is, I don’t like to look like I don’t maintain my vulva… Although I’m sure the doctors and nurses have seen EVERYTHING ALL DAY EVERY DAY! LoL

I guess it’s vanity that compels me. 
Anyways… I shaved yesterday, giving my body some healing time before my actual doctor is shoving a catheter into my cervix and hopefully inserting my “human seed.” 
I doubt I’m the only Shakespearean “To shave or not to shave…” out there. We talk about everything else… Not so much hair. What’s your routine with the docs visits?

Just a GENERAL FYI- I am perfectly comfortable with my body. It is a personal preference of mine to shave. It’s not due to society, I am an non-conforming gendered female. I am simply more comfortable without hair. Please don’t try to degrade me for your decisions or ASSUME I am uncomfortable with my body because I like it to look a certain way. Don’t try to push any “agenda” on me. You like it one way, I like it another. Let’s leave it at that, shall we?

I am not excited.

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Where did my life go? Seriously. Where did it go?

Oh yeah… The endless pursuit of a child. 

Being responsible doesn’t always pay off, kids. You try to focus on establishing your life and get settled in your career… But in the end you only get a good paying job to pay for the fertility treatments you are going to end up needing.  

Sorry, “Debbie downer” today. I just feel… Punchy.

I also started my progesterone injections (which are just as awful as I remember) under the guise of my FET on Wednesday. But I refuse to be excited… Because my psyche is not going to survive another loss. Full or chemical. I think If I ever get pregnant I will walk around like I’m carrying the new messiah for 9 months… Fearing losing it. 

I wonder when you get past the fear of MC? Even knowing that everything was screwed up inside of me, and that my remaining eggs in my ovaries are less then normal. It doesn’t make it easier. It doesn’t make me less stressed or worried. 

So I’m not excited. I can’t be. If it happens it happens. I am so tired of disappointment. 

That being said, I think the circumstances are “in our favor.” My body can GET pregnant, and now we know that the 2 frozen embryos are “normal.” My lining looks great, and the gigantor cyst on my left ovary went from “cats eye” size marble, to normal size marble. My body is ready.  

But I’m still not excited. And I think that’s probably weird. 

Because Why The F*ck Not? 

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Last week during my baseline they found that my left ovary had regrown the cyst. In the 2 months since my surgery the f*cker had grown back! The worst part, I KNEW IT! I felt it weeks ago and I knew it was back. My husband convinced me it was in my head, like a phantom limb after all these years. So I ignored the pain of it again. It wasn’t until I was laying on the table with the glorious ultrasound probe inside jabbing my cervix that the asshat reappeared on the screen! The clinician said “Wow! That’s a gigantic cyst you go there on your left ovary!” 

The Moment before I had joked about how my left ovary was the main “trouble-maker.” 

Now I was back to “What?!” 
Just what I needed, right? 
The clinician assured me it was “okay” for what we were doing, and then she went on to explain my next set of instructions… I know I didn’t really hear her although I nodded my head like a bobble head. 
It wasn’t until she touched my arm comfortingly that I quietly asked if she was sure about the cyst… I assume she saw the concern on my face she because she smiled softly and said she would review with my doc (who luckily was in that day). I let out a relieved sigh and thanked her profusely. 
For the next few hours I sat around in limbo waiting for the doctor to call to tell me whether they were going to cancel my FET cycle. Then all these strange thoughts came unbidden to my mind… I started to panic about whether it would burst while I was pregnant, if I did actually get pregnant… Do I keep going? Do I stop and go back under to get the cyst removed? How about the whole ovary? Stupid lefty isn’t really responding to STIM well anyway. Get rid of it! 
Luckily that afternoon when I got the normal bloodwork/medication call the doctor said it was okay to keep my medication going and that these cysts often “resolve on their own.” Which is comforting… Except the other one was growing in there for 20 years. I guess the main difference is this one appeared to be full of blood from the ultrasound, not tissue and yuck. 
Having surgery again would mean another month of recovery… Another month before I can move forward again. It also took a ridiculous amount of time to recover… To be fair, I had stage 4 severe… And my colon was glued to my pelvic wall with endo… It was a 4 hour surgery instead of the hour and a half it should have been. Of course, recovery wasn’t quick! At some point I started to believe I would always be this way now. Then one random day I stretched and it didn’t hurt. So I stretched a little further and suddenly I realized I was “normal” again. I had finally “recovered.” 
I should also reaffirm the fact that I also went straight into IVF so my body didn’t have a break. I don’t have a lot of eggs left (let alone good eggs) so I wanted to get what I could out. I figured why not let everything heal at the same time as the surgery recover. My mentality was: If I’m traumatizing my insides, let’s just do it all at one time. It meant I was in WAY MORE PAIN then the average IVF cycle… My ovaries were screaming! I started to talk to other women waiting for their ultrasounds/bloodwork and they would be like “Nope… No pain…” It made me crazy! LoL -Of course the one had stage 1 endo and PCOS, so her STIM was a lot let then mine. I however was responding to STIM so well on the ovaries that I had to start Cetrotide really early to stop my eggs form popping out. In fact, one still did, but that’s because left ovary is a piece of crap. 
Anyways… ALL OF THIS got me to thinking… If I get pregnant, IVF is considered high risk the whole time. If I ended up with a C-Section I could lobby to get my left ovary out at the same time. 

I mean, if they can tie tubes during a C, I think they can take one out! Right?
It’s especially appealing because when I’m just doing the Lurpon injections I feel like a normal human. Not that I’m considering a sex change anytime soon (as a gender nonconforming female I support all gender choices), but I rather enjoyed not having any estrogen. I am now honestly looking forward to menopause! 

And if I got one ovary out that would cut down on my estrogen dramatically… And the growth of my endo (which the doc told me is probably growing back as we speak… And by the growth of the cyst in going to agree). 
I’ve also considered the idea of the Lupron protocol for my endo treatment. I was on BC for 18 years… Which apparently didn’t do a whole lot to delay the progress of my endo. 
Other new and interesting things: 

With this first FET cycle I’ve been dealing with a lot of bullshit. Mainly my period starting a whole week late. And I honestly didn’t realize how batshit I get when I take Estrace. Estrogen makes me nutso. I’ve taken to warning people of my hormones instability… And I’m not even at the full dose yet. AND we haven’t added the progesterone which tends to make me weepy. Angry and weepy is going to be fun.  
I can still feel left ovary making a scene. I will be curious to see if it got any bigger on my ultrasound next week. Right now it’s just the aching that shoots up into my lungs and makes it difficult to breath. That should ease up with the end of my period… 

I guess we will see. 
The moral of the story kids: You know your own body! If something doesn’t feel right tell your doctors! 

Infertility Is Not One Size

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Infertility is not one size fits all.

I have endometriosis that ruined my tubes and ate up my eggs. Someone else I know has PCOS. Someone else I know has a weak cervix. The list goes on and on… 

Infertility doesn’t come in the same flavor or size. People need to stop making blanket statements about it.
Whenever someone gives me their crackpot advice it takes strength of will not to rip off their head and drink their blood… (And with fertility meds I do believe that possible at times.) 
Some of the most shitty advice I frequently get: “Be careful! I know someone who did IVF and then got pregnant naturally later!”
Good for them, I can’t begrudge them for their luck. Sometimes the body just needs help figuring out how to do it. I’ve heard these stories too… But they did do IVF for a few rounds before they had any success. They had an IVF baby first. That still shows the worth of IVF. 
HOWEVER, my body is not the same. My body is “broken” for lack of a better word. Natural conception would most likely kill me. Three of my losses have been presumed ectopic because my tubes are so narrow and twisted nothing can get down them. My shitty old doctor didn’t do their due diligence before I switched to a fertility clinic (if your patient calls you and says “I’m pregnant and in a tremendous amount of pain” you should PROBABLY SEE THEM IMMEDIATELY!), so we will never know for sure… But because of what they found inside during my surgery, it’s safe to say that’s what happened. My uterus itself is fine. I can GET pregnant. For heavens sakes, I’ve done it 4 times. -Keeping it, however, is another story… Mainly because of its location “my ovaries/tubes” as not a good place to implant… But also because I have low ovarion reserve and the remaining eggs are statistically high for abnormalities. Luckily, the two remaining embryos (out of 5) we have in the freezer have both been tested and are genetically sound. I am HOPING that now that they’ve been tested we will have success on this FET. (I will still have CVS done to make sure nothing bypassed the first round of testing…) 
If it goes wrong this time we may have to explore the possibility that my body treats pregnancy as an infection. Hopefully we won’t have to cross the bridge of reproductive immunology, but it’s a possibility I live with. 
Without IVF I would never be able to have children because I have to put my embryos in backwards (through my cervix) because they can’t make it down my tubes. 
I wish people would spare me their uneducated advice about MY body.
I especially love when people know better then doctors.

I understand this is not easy for other people to understand, but acting like IVF is some ridiculous alternative I have CHOSEN instead of having normal sex makes me want to scream! Of course I want to spend ridiculous amounts of money to have no sex and stick needles in myself daily rather then enjoyable intercourse! 

My infertility is personal. It’s mine. Everyone has their own type of infertility. That’s why each clinic designs a protocol based on each individual patient. 
Lucky for me, I have some great friends who have been there for me even when they didn’t know what to say or do… They sat silently listening, offering encouragement, and even grieved with us when we lost another one.
In conclusion: 
It’s likely that you know someone with infertility. It’s 1 in 8. Be supportive. Don’t say asshat things. I would recommend a shoulder to lean on, not a mouth full of bullshit. 

Stolen.

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Stolen
. I was reading an IVF success story a friend had passed along my way yesterday, and the woman who had shared her story wrote that “infertility steals who you are.”

It wasn’t until that moment that I realized it. 

Infertility does steal who you are. It steals your body and changes it. It complicates your emotions. It hijacks your hormones. It makes every moment of your life seem like a tiny little hell hole that only you exist in. 

It’s not just sweat you are feeling falling from your skin in this race, you are literally breaking apart. Little pieces of you break off with each hurtle you jump. 

Every moment, every single moment something gets lost. And you cope with it like it never existed before. What choice do you have? 

I feel like my life is measured in doctors appointments. I’m always waiting for the next ultrasound/blood work/surgery. You live in a world of “worst case scenarios” because it can and always does get worse. 

Meanwhile, through all these doctors visits, ultrasounds, and surgeries I ruin special moments for my friends and family. I can’t go dress shopping for my friend’s wedding because I’m lying on the couch on mandatory bed rest. With any upcoming social events I have to gauge what I can and can’t do with what the new cycle might bring, and usually that means a days and sometimes hours notice. I even have to carry my medication with me in a lunchbox because I’m tethered to a schedule. Sometimes I have to inject myself in a public restroom, which feels a lot like a drug addict. 

I have reminders set on my phone to take medication at all sorts of strange hours. 

To make matters worse every time I take Estrace I become a homicidal maniac. What’s with that? 
I took a walk at lunch today and I had to decide whether it was worth it. A walk. Something I used to routinely do… But lately I haven’t (mainly because I physically couldn’t walk -or even bend/stretch for that matter). But I know I shouldn’t be changing my routine too much right now… I know another round of bed rest is on its way. 

The reality is that most of the time I’m like a human slug these days because of my body. I just don’t have the energy. Infertility steals your energy.

Does it get easier? No. You just get used to it. 
It’s like being kidnapped and held hostage by your own body. 

But even so… I am hoping that what was stolen can be replaced with bigger and better things.

Every single moment of this makes you stronger. You will survive and it will surprise you how well you do it. Every hoop you jump through makes the next one easier. You start to expect them. You have to keep pushing. You have to keep taking steps. I know what this reward is, and it’s worth the path littered with the broken pieces of the soul you have left behind along the way. 

Infertility steals who you are, but that’s what a good insurance policy for. 

The Tale of the Killer Hotdogs

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I came across an majorly unscientific article about “Killer hot dogs!”
The premise was that hot dogs cause childhood leukemia.

What a load of garbage. Propaganda designed for the weak minded to start some new “clean eating” trend.

I should state that I do buy into organic eating, however I also believe our world is far too toxic to eat exclusively organic. You need a certain amount of toxins in you so you don’t walk around perpetually sick.
I should amend the aforementioned statement to say: I prescribe to the mentality of “some organic is better then no organic.” Which mostly means I don’t go out of my way to do it. I’m not shopping at whole foods (because F that place is expensive!!! AND most of the customers seem perpetually irritated or perhaps inflated with their own self-importance…) blah blah. I shop at the normal local stores and buy organic produce/items whenever possible.

So… Whenever some celebrity is tooting their organic diet in pregnancy I can’t help but wonder how deathly ill their children will be when they are exposed to our toxic environment outside of the womb. You can’t protect them forever because as some point breast milk needs to turn into solids. And solids become a matter of urgency when feeding screaming/hungry children. Most working adults don’t have the time or energy to slice up the organic celery every night… But assuming you have the time, its even more difficult when they see their friends are eating different things… Especially when their playmates are going to inevitably eat some pink-slime treated hamburger that comes with a tantalizing toy. How do you say “no” to that?

Anyways:
I would wager that it just so happens that children are more likely to eat hot dogs then the average adult. Seems like a fair statement right?
I would also venture to say that when they pulled the data for their little statistic it just so happened to be in the pull. Not that hotdogs cause leukemia, but that children with leukemia are eating hot dogs with the same frequency as children without leukemia (which is a lot across the board).

So I felt punchy and made this comment to the weird article. Thankfully several learned minds also agreed with the data and the correlation on hot dogs/leukemia.

…But one crazy lady just flat out replied “HOT DOGS ARE DEADLY!”

Making a blanket statement like “hot dogs are deadly” proves a certain lack of critical thinking.
Of course a hot dog is deadly if you jammed it down someone’s throat and purposely choked them with it… I think you could probably find 100 creative ways to kill someone with a hot dog if you really wanted to.
…But eating a hot dog occasionally does not guarantee certain death. (Or leukemia).

I would like to think I’m an expert on this matter because for a solid year as a child I exclusively ate hot dogs. This is true. All I ate for breakfast, lunch, and dinner were hotdogs. That’s not even a joke. I 100% did that. So how am I still alive?
I wouldn’t place money on the fact that I have some mutant gene that causes me to be immune to the “deadliness” of hot dogs. I had consumed 1,095 hot dogs that year. The next year I wouldn’t eat anything but Bologna. … So Unless you truly believe I’m some processed meat monster, by crazy article logic I should be dead.

The point remains: You just can’t believe everything you read on the Internet without a little research. There are people who will tell you that abscess teeth can be treated with coconut oil… Which in truth, if untreated, is most certain “death” when the infection hits your blood stream and circulates all over your body. Might as well go to a dentist and avoid the hospital. I don’t think it wise to claim to know more then a doctor. And I’m not claiming to either.
You can believe what you want, but don’t go about throwing hogwash at people and get mad when they push back.

My point is: Control your blanket statements, and do a bit of research from nonbiased parties. It wouldn’t hurt you to be a little more well rounded.