Monday, April 4, 2011


I had a little meltdown this weekend. The combined weight of trying to heal (I'm still bleeding, two weeks later), resume my physical therapy in earnest, diet, get enough sleep, and give Westley something like a normal schedule not involving countless hours of TV just flattened me.

The thing that hurt the most was the realization that I am a sick person.

I think of "being sick" as having a cold, the flu. Something acute. It has struck me before, but didn't really sink in until a few days ago that I have been sick since Westley was born. I've been sick for over three years.

I have new, unexplained food sensitivities. I have new, unexplained pain. I am in pain every single day of my life, from the moment I wake up to the moment I fall asleep. I have pain doing totally normal things, like loading the dishwasher. I almost burst into tears recently in the library parking lot, because I was in so much pain I was afraid that I wouldn't be able to get Westley into his car seat.

A year and a half ago, I was paying out of pocket for physician-prescribed physical therapy. My goal wasn't even to be pain-free. It was to be able to lower Westley into his crib without feeling like I was going to collapse.

I'm not trying to throw myself a pity party here. I'm writing out of astonishment - that I could let myself be this sick for this long. That rather than pitch a fit in the doctor's office, demanding a diagnosis and a pain-free life, I've gotten used to being sick. I've let 60% become the new 100%. I talk about things like "normal pain."

Really? Normal pain? It's not normal for a (seemingly healthy) 28-year-old woman to be in pain while getting dressed or cooking dinner. Or even just lying down.

"I'm tired of being sick all the time!" I cried to my mom.

"It seems to me that when you don't feel well, you think it's 'all the time,'" she observed. "You don't think like this when you're feeling well."

"I haven't felt well in over four months!" I snapped.

"Well, no one feels completely well during their first trimester!" she said. "And now, having to recover from this...event-"

She went on to hypothesize that a lot of what I'm feeling right now is fallout from the huge hormone shifts involved in being pregnant and then being not-pregnant.

But pregnancy hormones don't even come close to explaining everything else that's going on. My new physical therapist tells me my pelvis is out of alignment, and my core muscle strength is practically non-existent. (And she's helping me work on both of these things, but progress is snail's-pace slow.) However, that doesn't explain the food sensitivities, which seem to get more unpredictable all the time.

The bottom line: I have no idea what's going on with me, health-wise. And miscarrying has just complicated that. But it is absolutely not right to be sick all the time.

So today, I refuse to be a sick person. I don't really know what that means. Only that I will no longer accept 60% as "whole."



The Wayward E said...

Having read your blog for a while now, you DO seem to be sick a lot. Find second and third and even fourth opinions, if necessary. Maybe you have some unusual autoimmune disorder?

Medicine is a very complicated business. My father is a pediatrician, and he is constantly finding things in patients that he just read about in a CME journal a few days or weeks before. He's an excellent physician, but knowledge is constantly evolving and no one has all of it at once. Which means that unfortunately, unless someone crosses your path and their symptoms are typical or ring some kind of bell in your head, diagnoses can fall through the cracks from time to time.

Chronic pain is NOT NORMAL. But it is very, very misunderstood, and often goes undertreated. :(

Baby in Broad said...

Autoimmune disease has definitely entered my mind. Perhaps even a "not otherwise specified" type.

Melissa said...

I highly recommend you call Nancy immediately. This is what she specializes in, and she is better at it than just about anyone else. I know she would be happy to make you feel better. Don't hurt anymore than you have to.

Deidre said...

Aw, I am so sorry this is happening! This is terrible. I hope that you find something that makes you feel better and not pain-y soon.

When I was 17 I was diagnosed with a gluten sensitivity and it totally changed everything. I still get weird food allergies sometimes - like sometimes I allergic to nuts - but for the most part it has totally changed my life!

Paige said...

This sucks. Pain isn't normal. Have you tried chiropractic? (Not just any chiropractor, they range from super shitty to just shy of God... I recommend the latter). Mine is a nutritionist/raw foodie, physical therapist, and trained in the "weber technique" (for pregnancy and infants).

Also, FYI... I am still bleeding a bit... 7 weeks later. It is almost gone now, but I was still bleeding regularly when I took the misoprostol at 5.5 weeks (and then, obviously, really heavily while I was taking it) and now (a week later) it is finally tapering off.

(Just reread this next part before posting, and I just want to make sure you know that I am not trying to tell you what to do... I just didn't put up any "details" on my blog so I thought I would share. Oi. The problems only virtually knowing some can create :)

I had really wanted to do it naturally, since that is just the type of person I am (I had my first at home) but in hindsight, I am super glad I took the misoprostol. It waited almost 6 weeks, but by that time, I was just... ready. While taking it, I passed a ton of clots- huge ones- more than I had in the previous weeks combined. And then, 13 hours after taking the last of 4 doses... I passed a mass the size of a large lemon, and it was HEAVY. Startled the shit out of me because not only did I think I was more-or-less done bleeding at that point, but I didn't even feel it coming until the very moment it came out (it was totally painless... physically speaking).

Anyway, If I hadn't taken it, I am sure I would have ended up with a D&C... Once you have a follow up ultrasound, you will get a better picture of what is going on.