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Archive for the ‘Adventures in Colitis’ Category

Deflated.

Tuesday, July 12th, 2011

So.

Today pretty much crapped out sometime in the afternoon.  We spent a nice morning at the library, seeing everyone we know come and go and picking out fun books.  Then it was back home to hide from the humidity until my doctor’s appointment this afternoon.

Today was THE DAY! The day that I go off the medication that is too dangerous to take while pregnant.  We had (have?) finally decided that we’re ready and it feels right for another small Hattaway to come into the world.  I’m well, I’m strong, I feel happy.  It’s time!

And then I went and found out that the doctor doesn’t want me off the meeds.  He says I need them to stay well.  (Do you remember me sick?) And that if I want to be pregnant, I need to take the risk.  So I call my OBGYN, who told me in no uncertain terms that this medication is a Class D med and that no one should be pregnant on this medication.  Not me.  Not anyone.

So either way, either decision, I’m going AMA.

And that’s the really, really short version of the story.  I intend to follow up with both doctors, try to find a way.  Figure out a way that I’m not risking a dozen or more scary things for this baby, or letting myself just become sick.  Again.  So sick that I can’t take care of the baby that I have.

And here comes the disclaimer that I know my problems are small compared to many, but then comes the claim that they are big.  To me.  And to my family.  And that I’m just so sad that I can’t just get pregnant like so many others.  I know I’m in a big group, women who want babies, who for whatever reason can’t have them easily, or at all.  And I have a feeling I’ll get some semblance of what I want, someday.  But I’m human, and a FEMALE human at that.  Which means I’m going to cry about this and feel scared for awhile.

What do I choose?  I’m hoping there’s a miraculous option C.  Some way that both the baby and I can be safe and well.  You know, that baby that I’m not allowed to conceive.

Big breath….

When I came home from the appointment I found Cy playing in his room with my Mom.  I tried to tell her what happened, and of course just ended up crying.  And Cy came up to me and said, “Mommy, you sad?” I said “Yes, I feel sad.” He said, “I get you a KISSYOU!”  And ran out of the room.  He came back with one square of toilet paper, a “kissyou,” or tissue…and watched as I wiped my eyes.  He then snatched it back and ran into the bathroom, where I heard him flush it down the toilet.

Later when we were on the way to pick John up at work Cy asked, “Mommy, you still sad?”  And then after John was in the car he told him, “Mommy was crying at Cy’s house.”

The poor kid.  He is my sweetness.  And as much as he fills my heart so full that I think just sitting next to his bed and smelling his hair and listening to his breath is all I ever need to be happy forever, I want another one.  Because he’d be such, such a good brother.

Yes. This is about birth control but other things, too.

Thursday, March 11th, 2010

So.

I think things are finally settling down, a bit.

The last couple weeks have been a blur of playdates, book clubs, doctor’s appointments (for Camper and me), jury duty (I know, suck) and whatnot.

So let’s go back, shall we?

So yes.  In the spirit of full disclosure (I mean, I wrote about getting it) I totally got Mirena pulled a couple weeks ago.  I think it was making me crazy-o.  I read this post along with about a hundred others that identified some symptoms I’d been experiencing.  Of all the things I mentioned to the doctor, only two were “enough of a medical reason” to yank the thing, except for the fact that I’m starting to get freaked about not having periods anymore.  She said that ANY reason to want it out was enough.  So now we’re doing the whole “wait for the periods to come back and then figure out another plan” plan.  Which will include birth control.  (I guess my choices now are The Copper IUD, Yaz (cause it didn’t make me crazy) or an assortment of “barrier methods.” Dear God. Help us.)  Because I cannot get pregnant on the meds that I am on for my Colitis. The doctor actually said, “You have to be so careful.  This isn’t a situation in which you aren’t planning a baby and if you got pregnant it’ll be a happy surprise.  It could be very, very bad.”

Welcome to my colon, people.  Stupid colon.

In the meantime, I am feeling more emotionally sound.  I don’t think I’ve cried since I got it pulled- which now that I think about it- is pretty wow.  Today is John’s day off, lately AKA Erin’s day to freakityfreak out and cry about life and I haven’t felt that pressure building up yet.

It could be that I’ve gotten outside in some sunshine, that I had a wonderful two-day vacation from diapers and making chicken nuggets, that my husband did the dishes while I took a SUPER long shower…or any number of other things.  Or it could be that I no longer have a TEENY bit of hormones floating around my uterus in the form of a white plastic anchor.

Yeah.

SO.  WITH THAT SAID, this past weekend I left my husband and child and went to VA for my friend Emily’s wedding shower.  I’ve been to a LOT of wedding showers, and I’ve never felt so included and excited and had so much fun before.  E’s family put it together, and the food was good, the company was good, the games were imaginative and fun…the theme was “Herb Garden.”  Which was nice a springy, and each bridesmaid (or member of the wedding party…) had an herb leaf on her name tag.  I felt special just to be part of it, and Emily got tons of awesome swag.  And that plus a number of hours spent talking with her, just one on one, which is something we never get to do, was just so nice.  I told John when I got home that it was so good to sit and talk with an old friend for hours and realize that although a lot of our relationship might be reminiscing, our friendship now is based on who we are now, what we’re doing now and includes the people we love, now.  In short: it was so good.  And I can’t wait for the wedding.

I came home to my baby, who I am very glad to be bringing to the wedding next month (no more leaving him behind!) and to JURY DUTY.  Ta da.  So, I really wonder what they expect SAHM’s to do about their KIDS during Jury Duty.  I know they give ME and excuse for if I work, and will pay ME for days I miss from my WORK, but what if I don’t work and I then have to extend that to my husband?  Does my excuse card work for him?  Or…what?  In the end we just sat there for a couple hours and then went home, and I did have both my mom and John to chill with Camper…but what if?  Yeah.  I want to know, too.

So now life goes on.  Back to normalcy.  Whatever that is.

Just in case…

Friday, October 23rd, 2009

you were wondering what it looked like to get a weekly blood test from a woman who needs to go back to nursing school.

photo(2)

And that’s just after one week.  I get to go again on Tuesday.  I just hope the bruise stays so I can say, “HEY, LOOK AT what you did to me!”

Eeek.

Mercaptopur

Wednesday, October 14th, 2009

I’ve been under the weather for a couple of days.  Just a cold, I think.  But no fun.  Then today I went to the gastroenterologist for my routine appointment- and have since spent the rest of the day in a weird fog.  I ran around trying to get my new medicines and…er…daily procedure equipment? (if you really want to know…ask) and then ended up sitting and cutting squares for something I’m making for Camper’s  for Christmas for an hour after dinner because I couldn’t get my body to do anything else.  After he went to bed my brain finally turned back on and I managed to clean the floors and continue washing diapers (not before running out) and put away everything from the day.

And now on to posting.

SO, you might or might not know that I’ve been dealing with a whole huge random uncomfortable health concern for over a year now.

(Catch up here, from when I thought I caused my own problem, here when we were told a baby sheep caused my problem, and here when I passed out in the grocery store and we knew that niether I nor the baby sheep had anything to do with the problem. Wait a few months for my baby to be born because no one could figure out what was wrong with me while the baby was inside, get through a cross country move to have a non-helpful general practitioner told me it was emotional, only to be countered by a gastro who actually did a test and diagnosed me.  And know we know that it’s indeterminate colitis (is it Chrohns, is it Ulcerative Colitis? We may never know….) that is kicking my butt.  Still.)

I was fine for awhile on my whopping 12 pills of Asacol a day, until a few weeks ago.  I called and asked (yes REQUESTED) to try Prednisone again before going to what I was told is “the next level of drugs.”  But today I went to the doctor again, and even on 12 Asacols and 6 Prednisones a DAY…I’m still not good.  Not good at all.  So we added a new drug called Mercaptopur.  Which I have not Googled at all because I just don’t want to know.  I know three things. A) It is used for leukemia patients  B) I can’t get pregnant or breastfeed while taking it and C) I have to have my blood tested weekly to make sure my liver doesn’t shut down or some other nonsense.

I can’t even TELL YOU how upset that makes me.

I know, I know.  I’m lucky that there are drugs that can help me feel better (hopefully).

But the idea that I am NOT HEALTHY ENOUGH to be without this scary medication (or something bigger and scarier) and that I can’t get pregnant on it means that I can’t get pregnant.  Not that we were planning on it, but the freedom was there.  I could have.  Now that freedom is gone.  I need to get better, and in order to get better I have to take this drug.  And that is that.  Responsibility.  No one wants a pregnancy like the last one.  Remember when my Mom came to live with us for like… MONTHS because I wasn’t aloud to drive places on my own and didn’t have enough blood and glowed in the dark?

ARG.

And, just for instance, if I were to get on a plane and crash land on a desert island and I didn’t have these meds and these blood tests, I’d be SCREWED.  Stupid night time television reminding me of my limits.  Moving on.

On TOP of it, I found out why I’m not sleeping.  The Prednisone, now nicknamed “pill from hell” has apparently raised my resting heart rate to somewhere around 100-120.  The doctor said that I am to avoid exercise and stress, and just try to relax.  The nurse said it’s like I’m exercising just sitting here.  Writing this blog.  No wonder I’ve been SO HUNGRY and SO TIRED and SO NOT SLEEPING.  For WEEKS now I’ve slept so crappily, and if I heard even the SMALLEST noise I’d wake up with my heart pumping ready to GO GO GO.  My mind has been RACING and my body can’t seem to keep up with it.  Now I know why.  The drugs have induced some kind of heart situation in which my body is running on overdrive- which obviously needs to stop soon.  As soon as we can wean me off the Prednisone we will.  But SERIOUSLY.  (On the flip side, now I don’t have to worry that it was my OCD going all crazy.  Nope, just a panic-causing drug.  It’ll calm down when I get off of it.)

So to recap: I’m not better.  Not even close.  I get to take scary new drugs that mean that I can’t just have a baby an old time we feel like it, and I’ll regain a normal sleep pattern when I get off the juice.  Meanwhile I just have to light some candles, endure the sympathy eyes from women at the WalMart pharmacy who were previously uber mean to me, and try to relax while my child is teething.

pills 010Check it.  I finally broke down and bought a pill organizer for the 20 pills I take daily.  Nothing says chronic like M-F AM PM plastic containers.  Awesome.