Wednesday, December 16, 2009


Later today, the children have to get their H1N1 shots.

I say 'have to' because the doctors said it is best for their mother.

I have already had mine.

Billy has had his.

Now the little ones 'have' to have theirs.

I feel badly that the only reason they are getting these shots is because they have a sick mom.

Otherwise, I really don't think we'd get them the vaccine for it.

Not because we are anti-vaccinations, because we are not.

But IF IT WEREN'T FOR CROHNS, no one in this family would have gotten this vaccine, that we all know so little about, but are all lining up to receive.

I was told I didn't have a choice, and that it was in MY best interest that the children and husband got them too.



Yeah, that sounds biblical.

That sounds like the behavior of a submissive wife and mother.


I don't like the way that sounds.

And I damn sure don't like the way it makes me feel inside.

And I know it will make me feel even worse during the screaming that will take place in about 12 hours.

I fucking hate what I have to put my family through, day in, day out.

Sometimes it's just a matter of me laying in bed too much and missing out on something.

But this?

My kids have to get stabbed by needles because I have Crohn's Disease.

One of them will exclaim this tomorrow at the top of her lungs.

And she's right.

She's absolutely right.

But what the fuck am I to do about it?

"It's in YOUR best interest that your famiy is vaccinated."

I hate this.



We prefer Gilette.

Mach 3 actually.

And why are the blades so damn expensive, can you tell me?

Cuz the reason we prefer Mach 3 is because they are cheaper than Fusion.

Why am I talking about razor blade preferences, you ask?

No, I am not preparing to slice my wrists vertically, or to institute bleeding from any part of my body, thank you.


It's my mouth.

My mouth, my tongue, my gums, the top of my mouth, the outside corners of my mouth, under my tongue, the walls of my mouth.

Did I grind up some razor blades and eat them for supper?

Are you sure?

Well, it feels like I did.

And the occasional rampant bleeding looks like I did.

And did you know your taste buds can just fall right off?

They look like mushrooms.

I wonder how many I started with, versus how many I have left?

They turn white.

They hurt like HELL.

Then they fall right off.

Or they were shaved off when I was chewing the razor blades.


My mouth is in complete agony.

It feels better when I drink warm coffee though.

But I've been drinking so much coffee that gosh, it's 124 am and I am still wide awake.

Anyone who knows me in real life, knows that I have never been a coffee drinker, and also knows that I have never been a night crawler.

Blame my mouth.

And the razor blades.

One doctor and one nurse say it's the crohn's. I think it is. For goodness sake, what the hell else could it be? Besides that, I've been diagnosed with it from Stem to Stern. And the sores look like the same sores I have in my stomach and gut. The only reason I present this argument is because my favorite doctor - Doctor Fucking Hank , the alleged Crohn's GURU, says it's not Crohn's it's some sort of drug interaction. To which the other doctor and HIS nurse say, then why does it feel better when you drink coffee? And why does it NOT FEEL better when you take Atarax?




Gosh I'm sick of diagnosing myself!

So now, I guess we wait until the next treatment on 12/29 and see if my mouth results in any improvement. If it does, I'm right. If it doesn't, UGH.

Please pray that we get relief either before then, or on 12/29. I mean, my mouth Really REALLY REALLY hurts. The sores and ulcers are EVERYWHERE within the mouth.

If you were here, I could show you. But I'm not putting a picture of my sick and ulcerated mouth on the web for all the world to see.

Not today.

Wednesday, December 9, 2009


Believe it or not, it has been six months since I had actually been to Dr. Hank's office near my home for a regular, ole' six month follow up appointment.

I tried to postpone it as long as humanly possible.

But, alas.

The greatest nurse in the world calmly, gently, actually I think the word is GLEEFULLY, reminded me that I had to see him every six months in order to keep getting my Remicade like I had been.

Which, translated between she and I, really meant:

"Heather, shut your piehole, go see the asshole, keep your mouth to a minimum, and I will get to stay in charge of your Remicade treatments and everything will still be okay. Don't go in there causing problems or the only person you are going to hurt is YOURSELF! Just do it!"

Believe me, I understood her, IMPLICITLY.

And to be honest, I didn't want to see him anyway.

In years and appointments of the past, I would go in there with notes, and internet clippings, and names of drugs in research, and.......


Now, I just go in there.

Especially since he has acknowledged that I am his albatross.

Remember this?

So I went.

And it was fine.

I guess.

He was mildly perpelexed, hmmm, no that's not the word, I think IMPRESSED is the word, at my new medical team:

Dr. Primary
Dr. Pain
Dr. Blood and Erin the Vampire
Dr. Fairy Tale in my Dreams who may or may not be waiting in the wings for me at one of the most accomplished medical universities in the South

New medical team notwithstanding.....

He knows he is no longer in control of my medical care and decisions.

I am.

He knows that I am a lot smarter and more educated related to my illness than he had previously given me credit for.

He knows that I know. (hold on for this one).

We finished the appt.

He examined me.

He made small talk related to the pain doc, and said he was very happy to hear that the methadone was for my knees, not for my guts.

He said he was glad I stayed with the Neurontin rather than give up on it in the beginning because of the 'drunk like' side effects. I told him that had been ugly, particularly for the hubby, but we were through it and back to 'normal'.

I told him our biggest concerns now were financial, and getting insurance after the COBRA runs out in March, and finding 'work', since our reserves were GONE.

He inquired about Dr. Blood. I told him that Dr. Primary wanted him on board BEFORE I got lymphoma, not AFTER. He neither agreed nor disagreed, he just nodded his head in that oh-so-condescending-way-of-his.

Finally, we are done.

He wishes me a Merry Chirstmas.

I wish him a Happy Hannukah.

And then I say......

"So.....we proceed as we have been.......then?"

He nods.

And then he says, "Unless you want to try something else."

And I know there is nothing else.

But I humor him and say, "What else?"

And he says, "Another drug that would not help you as well as the one you are on."

And I said, "Then we continue with the Remicade, as is, then, yes?"

And he sums it up better than I ever could, better than I thought he could:


........Until there is something else."

And I repeated him.

"Until there is something else."

Which was the most hopeful thing either of us could muster.

Because no matter what, we both have hope.

He, must have hope, because of his vocation, because of his practice, because of his patients.

Me, I must have hope.

I must have hope.

For me.

For my babies.

For my babies' babies.

For my siblings.

For my siblings' babies.

Yes, I must hold on to that hope.

Because hope is all there is.

Until there is something else.......


Monday, December 7, 2009

Not Me! Monday


The scale did NOT say 157.5 pounds today.

I have NOT washed and dried and folded three loads of laundry so far today.

I have NOT completed the addressing of 250 Christmas cards.

I have NOT made my bed, with freshly washed sheets.

I have NOT dry Swiffered where I found it necessary.

I am NOT exhausted.

It is NOT 1:10 pm.

I am NOT exhausted.

It is NOT 1:10 pm.

Why do I keep saying it?

Because it is NOT difficult to read.

I am NOT exhausted.

It is NOT 1:10 pm.

There is NOT more to do.

So very much more to do.

I did NOT promise that the dining room table would be cleared off today.

It will NOT.

I have NOT let myself down once again that the Christmas cards are NOT finished.

I have NOT sent out all of Jake's birthday invitations.

There are NOT four more loads of laundry to wash, dry, and fold.

There are NOT presents in boxes hidden all over this house and two others that I need to open and wrap and then hide again.

There are NOT presents en route that I forgot I even ordered.

There are NOT so very many more things to do.

I do NOT have bell choir concert practice tonight.

My body is NOT still having a Remicade reaction every 2-3 hours.

I am NOT tired.

All that NOT being said.

I am now going to take my high carb, high protein lunch which soothes my wounded mouth.

I am going to take my afternoon medicines.

I am going to put on my fluffy socks.

And I am going to take a nap.

My new normal tells me that I have to accept what DID get accomplished.

Instead of what did NOT.

Yes, I have so much undone.

Yes, I have a full day of errands to run.

But not the next day.

Maybe I will get more finished on Wednesday.

Maybe on Thursday.

Maybe on Friday.


Maybe NOT.

But I have to let go.

Right now.

And take a nap.

Because my body says I have to.

I wish I did NOT.


it is hard.

to remember.

that whatever i do today.

is more than i have done in a week.


Whatever i do today, is more than I've done in a week.


Whatever i do today, is more than I've done in a week.


Whatever i do today, is more than I've done in a week.

Saturday, December 5, 2009


Had a treatment on Tuesday.

Which means my body should be at it's utmost highest point of immune suppression.

Which means I should be as healthy (or as symptom-free) as possible for the next four weeks.

That's the way it is supposed to work, anyways.

That's the way it USUALLY works.

Cept today.

When I woke up and started pooping my brains out.

Or my guts out.

Eight pounds worth to be exact.

I even pooped in the shower.

Isn't that just the most awesome thing to be able to admit?

That you are almost 40 years old, have a college degree, unbelievable ninja skeelz, and poop on yourself in the shower?


I'm freezing cold.

I'm feverish.

I'm loading up on meds and carbs and bananas.

My mother asks if I've called the doctor.

Why would I do that?

What the HELL is HE going to do?

It is not ALBATROSS fishing season.

I know what to do.

It will get better.

Eventually there will be nothing left to poop.

Eventually it will be another day.


Praising God that today is a horribly yucky day outside and it's okay for all of us to be in our jammies and lay around.

Praising God that so far there has been no blood or vomiting.

Praising God that the children are getting along today (well, sort of).

Praising God that my husband is being amazingly understanding today, knowing that this is such a freaking weird thing to happen just AFTER a treatment, and especially since he spent the entire day with me yesterday, and he is just as perplexed as I am as to why the hell this is happening.

Praising God because it seems like that's what I should be doing than Damning him.

But sometimes I just feel like saying Dammit, at the same time that I'm really Praising HIM.


Friday, December 4, 2009

The Fifties


I know!

Can you hardly believe it?

With all the steroids and laying around?

And that I haven't shaved my legs in three or four days (which counts for at least 3!)


What is this crack whore talking about?

Oh, yeah!


The Fifties!

She's back in the Fifties again!


158.5 on the scale!




I guess I forgot to mention that I actually tipped 165 pounds (that would be ONE HUNDRED AND SIXTY FIVE POUNDS for you visually impaired individuals) BEFORE the dreaded turkey day.

And yes, I ate my turkey and my mashed potatoes and my sweet potatoes and my awesomely scrumptious Paula-Deen-stolen-but-call-it-my-own-Corn Casserole and my very own Pumpkin Puddin' Pie and my Mama's pumpkin pie which I usually skip but this year it was quite delectable, especially since I ate one whole ENTIRE pie covered in REGULAR Cool Whip.

So yeah, I'm guessing the weight gain really WAS water retention or a drug reaction, and that the prescribed meds to correct such abnormalities really DID their thing.

I'm not going to ask how.

I am not going to ask why.

I am merely going to be thankful that I didn't have to go buy some size 12 Divas, that the size 10s are going to be A-O-Kay!

But no matter what, it's great to be:


Hold on, FORTIES, here I come!


Thursday, December 3, 2009

Marathoners and Hurricanes


I am certain I have introduced you to my most fabulously delicious SIL, Mermaidelicious.

But if you have forgotten, here is her picture:

But this post is not about a picture of Mermaidelicious.

It's a post about love.

By now, all of you out there know that I have Crohn's Disease.

If you didn't know that, well you know it now.

If you don't know what it is, you can Google it.

Or you can just take my word for it.

It sucks.

But let us return to Mermaidelicious.

Do you know how sometimes you'll have someone in your life whom is hurting, or whom is suffering, or whom is just plain miserable, and you care about them so darn much, you just don't know WHAT to do?

Well, we haven't really talked about it, but I think this is how Mermaidelicious was thinking, oh about 18 weeks ago or so.

So with a most personal touch, she figured out a way to not only help me, but perhaps millions of others, as well as providing me with a visual, concrete example of her love for me.

Here it is:

Help for Hurricane Rojo

She's going to run a half-marathon in my honor.


She's never run one before.


Not one.

And I assure you, that no matter how hard I tried, or how badly I wanted to, or how hard the world prayed....I would never be able to run a half marathon for Mermaidelicious or anyone else. But I can most certainly post her journey on my little, ole' blog.

But this isn't necessarily a fund-raising story.

Mermaidelicious and her husband, my brother, Two Fisted Chris, just moved across the country, permanently, oh say, 7 days ago.

This morning, Mermaidelicious will board yet another plane, and on a beautiful morning in Las Vegas, Nevada, surrounded by desert sand and sun, and survivors and strangers and supporters and loved ones, yes, on this date, Mermaidelicious will attempt to complete her very first Half-Marathon in honor of sick, little, old, ME.....Hurricane Rojo.

I'm not even going to try to put what I'm feeling into words.

To do so would be to dishonor her selfless action.

Instead, I will leave you with a montage of Mermaidelicious

Thank you, Mer.

I love you to pieces, and I'll always remember.


Wednesday, December 2, 2009

Post-Treatment Reaction


Anybody want to know how my treatment went?


Here's my post-treatment prescription regiment until the allergic reaction subsides:


FOUR times a day



Technical Difficulties


Clearly, there was no live feed from Tuesday's always-fun-and-oh-so-entertaining-and-painless Remicade transfusion.

Mighta had something to do with the fact that I didn't take my laptop with me.



Well, in another 4 weeks, we get another shot.

But again, there will not be a webcam, for HIPPA reasons, as the infusion lab seats 8 other Crohnie's, just like me, and they might have a problem with being videotaped, and I'm not a lawyer, and, and, , yeah, no webcam.

But I am going to make a concerted effort to post the transfusion process in words, as difficult as it may be, and when you read it, it will probably be reminiscent of Hunter S. Thompson. Or something.

But all my drugs will be legally administrated.

I think.


How would I know, really?

Tuesday, December 1, 2009

Live Feed Today - by your favorite Crack Whore

My doctor's infusion lab now has wireless service for all its patients.

For the first time in the history of my battle with Crohn's Disease, I will be doing a live feed throughout my Remicade treatment, starting at 9 am.

Sorry, no webcam.

and please keep in mind, I will be EXTREMELY high throughout the process/odeal.

Tell all your friends!

This could very well lead to a Pulitzer.

Or being Baker Acted.