Tuesday, February 3, 2009

How do you feel NORMAL???

How do you feel NORMAL?

It was an important question. An innocent question, actually. Posed by a friend of mine over Shabbos dinner last week. It was my fault, really. I had told him that in any given IVF cycle, a woman could be on 10-12 (or more) different medications.

Just as an example, here's what I took/take:
Doxycycline
Baby Aspirin
Birth Control Pills
Lupron
Follistim
Luveris
HCG Injection
Zithromax
Estrace
Prenatal Vitamin
Metformin
Progesterone in Oil Injections

Now, I didn't list out my medications for him, but just at the sound of 10-12 (or more) medications, he was shocked. Visibly shaken. How do you feel NORMAL?

He immediately tried to retract the question, sensing, perhaps, that he may have stepped over a line into territory that was too sensitive. But, honestly? It was an honest question. It was an important question. And it deserved an honest answer.

The truth is, you don't feel normal. Nothing about this process is normal. And nothing subsequent to this process is normal. A friend of mine who has four children, including a set of 3 year old IVF twin girls is still so completely traumatized by her IVF experience that she can barely remember any of it - she has so completely blocked it out of her mind. She herself is a physician, and so had a deep understanding of the clinical aspects of the process, and yet she has retained nothing of her one IVF cycle because being forced through this emotionally draining experience was too much for her to process. And, in fact, it was the sheer number of medications that pushed her over the edge of sanity with the whole experience. To her, it was taking someone who was, on the surface, a completely healthy human being (save slightly elevated cholesterol in her case), who took no medications in her life and suddenly handing them this enormous box of medication that would become their life for the next month. That aspect alone was so life-changing for her that it seems that she will never be the same, and possibly will never be over the bitterness of the experience.

I, for one, am fascinated by this, as I've always been a person who has to take a handful of pills before I go to bed at night, so the boxes full of medication don't bother me a bit. That being said, there's nothing normal about giving yourself injections three times a day. There's nothing normal about any of this, of course. There's nothing normal about going in for ultrasounds every three days, or every other day, or in some cases (like mine) every day by the end. There's nothing normal about all the bruises we end up with all over our bodies. On our arms from the blood draws. In our hands from the IVs from the egg retrieval anesthesia. In our stomachs from the subcutaneous injections. In our buttocks from the PIO injections. There's nothing normal about any of this, is there? How could we possibly feel normal?

Nevermind any of that, he said, if you're taking all of those medications, sooner or later the side effects have to add up! That's for darned sure. The debilitating headaches. The hotflashes. The exhaustion. The snippiness. The crankiness. The nausea. The headaches. The weight gain. The weight loss. The headaches. The weepiness. The mood swings. The headaches (have I mentioned how much I hate lupron?). You're right, my friend, we don't feel normal. We feel like shit.

And yet, we are expected to lead our normal lives. We are expected to lead our normal lives without letting on to the world that there is anything at all out of the ordinary going on in this very private aspect of our lives. We are expected to sit quietly hoping and praying for a miracle. We go to work each day. We come home each night. We shower, we get dressed, we socialize (if we can). If we already have children, we still have to tend to them, run their carpools, help them with their homework, take care of their appointments, get them to soccer. We are expected to sit at baby showers and smile as if they don't bother us. We are expected to ooh and aaah at other people's pregnancy bumps. We are expected to be normal, functioning members of society with all of these hormones injected into us - side effects and all.

Yet, we cannot lead our normal lives. This week alone, I've had to cancel three meetings and two lunch dates. Last week I had to keep three people on call for Shabbos to have things arranged so that I had adequate child care and halachically appropriate arrangements for me to go to the clinic should I have to go for retrieval on Shabbos (I did have to go on Shabbos). Things change at the drop of a hat. I had only 48 hours notice to make my arrangements for retrieval on shabbos - a complex set of arrangements to make - and that included moving my entire work schedule around on Friday so that I could go into the office in order to sign all my consent forms ahead of time, since I wouldn't be able to sign anything on Saturday. This week, I was supposed to have Transfer on Thursday. Then Tuesday. Then Thursday. But maybe Friday. Who knows!

We can't schedule vacations. Heck, I can't even schedule lunch with my friend L who wants to take me out for my birthday which was last week.

So, no, my friend, we don't, and can't, feel normal. But I thank you for your very honest, and very important, question.

9 comments:

Anonymous said...

I have my own chronic medical issues that keep me from feeling normal in much the way you describe.

I'm so hoping this cycle proves to be fruitful for you!

battynurse said...

Nope, nothing normal about it. I didn't really mind all the meds, it felt like I was doing something. Also didn't mind the bruises they were badges of honor. However what the meds, hormones and all the other junk of the cycle did do has totally done a number on my head that 2 months later I'm still trying to recover from.

Bea said...

Great post. Great points. I was trying to explain it to someone about a month ago, and I was failing miserably. Eventually I just had to stop and say, "Put it this way - having this baby was like getting my life *back*." That seemed to work.

Bea

LJ said...

Normal? Yeah no such thing as normal on that shiz.

Jamie said...

I totally agree. Thanks for a great post!

decemberbaby said...

This is a fabulous post. Really. Its phenomenal that people expect infertiles to act normal through all the treatments. Phenomenal, and unfair - if it wasn't so personal that we don't want to share the details.

Well written.

Anonymous said...

So well said, my friend.

Kitty said...

You're right in that it is not normal, but it is relative. I see it as "my" normal, sort of like having triplets is crazy to most everyone, but "normal" for me. Does this sound odd? My infertile life of drugs and ultrasounds and blood draws became became, well, I guess sort of ordinary. IVF is unfortunately my routine way of conceiving children. So, while the drugs and tests make me feel all goofy, the process does not. I really liked your post. Good stuff for me to think about when I talk to other infertiles.

Malky B. said...

Fantastic post! It just about says it all for people going thru treatment having to keep doing their "normal" lives while on abnormal drugs.