H1N1

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.

Huh.

MY BEST INTEREST.

Yeah, that sounds biblical.

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

Hmmmmm.

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.

Gilette

~

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.

No.

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.

Ouch.

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?

Right.

Jackass.

UGH!

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.

Until

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.......

HOPE.

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:

"Yes.........

........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.......

~

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.

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.

Reminder

~
it is hard.

to remember.

that whatever i do today.

is more than i have done in a week.

Again:

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

Again:

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

Again:

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

Dammit

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?

Dammit.

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.

Eventually.

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.

DAMMIT!

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?

What is this crack whore talking about?

Oh, yeah!

Right!

The Fifties!

She's back in the Fifties again!

Like......

158.5 on the scale!

Woohoo!

Woohoo!

Woohoo!

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:

BACK IN THE FIFTIES AGAIN!

Hold on, FORTIES, here I come!

~

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.

Nope.

She's never run one before.

Never.

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.

Rojo

Post-Treatment Reaction

~

Anybody want to know how my treatment went?

Well.

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

FOURTEEN pills

FOUR times a day

Yeah.

~

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.

Ummmmmm.

Duh.

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, and.............so , 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.

Hmmmmmmm..

How would I know, really?

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.

Satan

is at work in my life.

He is trying to wreck my body.

He is trying to wreck my family.

He is trying to wreck my marriage.

He is trying to destroy my life.

I have a few words for you, Satan:

BACK THE FUCK OFF, BITCH, CUZ I AIN'T GOING DOWN EASY.

YOU ARE FUCKING WITH THE WRONG BITCH.........AND.........

I am one of God's Christian soldiers these days.

You are outnumbered, guy, big time.

Just go away, and leave me (us) alone.

`

Precipice

~

Having that on the precipice of a nervous breakdown feeling again.

Nothing is 'wrong'.

We are in no worse a situation than we were yesterday. In fact, things are looking 'up' for hubby's new venture.

So I have no concrete reasoning as to 'why' I feel this way.

But my guts are in my throat.

I just want to be left alone.

And if I hear "MOMMY!" one more time, I might just lose it.

I keep having very quick flashbacks to the ugliness of 30 years ago.

As well as the ugliness of the evilness of a couple of years ago.

And then the flashbacks start all over again, like a constant, unending roll of film.

No.

Drugs are not the issue.

I don't take those kind anymore.

Haven't in many months.

I don't know who these demons are who are taunting me.

I don't know what they want.

I wish they would just tell me.

Then perhaps I could give them what they want, so they will leave me alone, before I fall off the precipice.

153

~

Thank you, prednisone and solumedrol, thank you.

153.

POUNDS.

153.

Thank you.

Good news - no one seems to have noticed.

Good news - the low rise jeans still fit.

Good news - the long hair is hiding the moon face a bit.

Good news - Clinique's 7 day scrub lotion is keeping the acne at bay.

Good news - feeling pretty good.

So I guess it's no big deal that I cracked 150 since I was pregnant?

Of course it's not.

All that matters is how I feel.

And I feel pretty good.

And I will stop stepping on the scale, and then I will feel even better!

~

ATARAX ....IS the answer!

A-ha!

Atarax IS the answer to my post-infusion reactions.

Yesterday, I had the itching, and the redness and the hives.

Today, I do not.

Today, it is a struggle to move my legs, but I have no itching, redness, or hives.

And today, I am well enough to lie on the couch and take care of phone calls and paperwork.

Atarax IS the answer.

And can someone please tell ----ME------ WHY------ I------------ am the one diagnosing my own medication as well as diagnosing myself, period????

UGH.

I guess I should just be thankful that it was better this time, and that there is hope for next time.

And that is what I will do, today.

Amen.

Dr. No......becomes Dr. Yes...????????

Monthly Rat Venom Day yesterday, once again.

My four week routine.

If I could name my nurse out loud, believe me I would, from the very top of my lungs, because she is phenomenal.

Perhaps the best nurse I have ever had.

And believe me, I've seen many a nurse in my day.

I digress.

It wasn't such a bad day.

We started 40 mg of Prednisone two days before the infusion.

Since I have been on so many steroids the past two months, both oral and nasal, I have ballooned up to 150 lbs.

And I don't eat anything besides yogurt and dinner.

Oh, and about 4 candy bars a day.

But the diet isn't the reason.

It's the stinkin' roids.

But they are working to make it less of an ordeal for me, so I have stopped fighting them, and counting down the days until my 50th birthday, when I am willing to accept knee replacements.

Not one moment earlier.

Everything in the whole 'new' (since August) regiment seems to be working brilliantly.

In a nutshell:

Methadone, 3x a day, every day, - has eliminated the knee pain. And I have not morphed into Anna Nicole Smith in any way. Dammit.

Neurontin, 2pills, 2x a day, every day - whew. This one was rough. I had to ramp up to a total of 1800mg a day, but Dr. Pain promised me that once I got into my blood levels, the side effects would wear off. And she warned me they were bad. What she did NOT warn me about was that they would be bad for those AROUND me, not necessarily for me. Neurontin is an anti-convulsive nerve drug that is used for epileptics, as well as a whole host of other illnesses, but because abdominal pain is very difficult to treat, she thought this would be a good one to try. It is very inexpensive. She warned me that I would be very sleepy as I ramped up, and that I would sometimes be confused, but if I could just get through those side effects, it could be an excellent solution for me. So when I came home and told Billy about it, he either wasn't listening (I vote for this one), didn't care, or didn't understand the volume of what I was talking about. Halfway through my ramping up to my goal dosage, he starts yelling and screaming at me about how I was acting like a drunk, how my speech was slurring, how I was talking to people who weren't even there, that i was sleeping way too much. And I said, but you knew this when I started the drug! And he said, he guessed he didn't know how bad it was going to be. I told him we were almost to the end of the ramp, could he just hang on long enough to see if the doctor was right? And he reluctantly agreed. As he was driving me to my Remicade infusion yesterday, I asked him, "I have finally reached the optimum dosage and the drug should be stable within my blood level. Have the side effects gone away in your opinion?" He merely nodded his head, yes, which really meant, 'I'm sorry I went off on you when it wasn't your fault, and yes your doctor was right, and I'm sorry I didn't tell you that a week ago.' But that's okay. As long as we're on the same page, he doesn't have to say any more than that.

I also asked him if he thought the 4 week infusion period was working. He said, Yeah, don't you? And I said that I did, but wanted to make sure he did as well.

I knew it was working when I started to have severe breakthrough duodenal and joint pain about two days prior to the infusion. Which means, in laymen's speak, "Heather, um, it's time for Remicade." Hello,

Oh yeah, and my poop looks like real poop! All the time! I don't even know what that means, except for, no one in the family will be able to recognize it if I don't flush!

This nutshell is growing. No need for me to include all my meds, because we might as well type out the Walgreens formulary. No thank you!

back to the Incredible.....Dr. NO!, Other wise known as Dr. Hank.

So I sit in my special Remicade recliner, with the greatest nurse in the world, at 9 am. Most people would have been finished at 11 am. I left at 230. This is an improvement, people! A huge improvement.

She pre-medded me with Benadryl. Then she asked me to use my albuterol inhaler BEFORE she started the Solumedrol. (This woman is bound and determined to make these reactions as minimally horrifying as possible. She cannot make them go away, but dammit she is trying her best to make them better for me, and that is the reason I want to scream her name from the top of the highest mountain!) She starts the fluids, starts the Solumedrol, then starts the Remicade, at about 5ML, then very slowly increases them as time goes on, as I can tolerate.

And here we go.


One hour and 10 minutes in.


Same as always.

I'm starting to feel it.

EXCEPT - it is not as bad as it has been.

She was with another patient, and I had to pee, so I told her, it was starting, but that I was okay, and that I was going to the bathroom, and she said she'd be ready as soon as I got back, was I sure I wanted to wait. And I said I thought I was okay. And she said Okay.

So I went to the bathroom (10 feet across the hall), peed, started to wash my hands, and a very purple faced Heather was staring back at me. So I knew it was time to get my purple face back into that infusion room, and QUICK.

I get in my chair, she has finished with the other patient, and is loading me up with more benadryl. She tells me to use my daily inhaler, Xopanex. I do. Still not feeling so great, still hot to the touch, still purple, still itchy, but the electrical current isn't nearly as bad as it has been in the past, and I am not screaming at the top of my lungs that I am going to die, I hate this I hate this I hate this. So she gives me some more solumedrol.

Oh, she had stopped the Remicade BEFORE I went to pee, I forgot to mention that part.

I remember that I still wasn't feeling very good at all, but I didn't feel like I was 'dying', as I really have felt in the past.

At this point, nothing is going into me but straight fluids.

I knew I couldn't just stay there all day, so I told her to turn it back on.

She did, but she told me to take a valium and a methadone (all within my normal dosage instructions), and two more hits off of my albuterol inhaler. I did what I was told.

And that was it.

No more reaction.

Finished at 230. Not so bad.

But during my time there, I had some questions for Dr. Hank.

I'm sure you've gotten this message before, but my love affair with Dr. Hank has diminished to some other kind of affair, that I can't even describe. I feel like I don't even need him as long as I have her. And that any time I am REQUIRED to see him, he orders some stupid damn test I know now that I don't need, or just ends up making me mad as hell because I still can't get over the 'albatross' factor.

So I had a few questions. One of the questions, I have asked EVERY SINGLE TIME I have had an infusion, and have gotten the same answer, but this time I did my damn homework and reworded it.

The question was related to the post-infusion reaction that I have been having when I am at home, which scares me more when I don't have my nurse, or I am all by myself, or what in the heck do I do now?

The question was, "When I have the post-infusion reaction at home, the rash, the hives, the itching, isn't there SOMETHING ELSE, SOMETHING besides Benadryl that he can give me. I mean, there has to be, because this one time, at Band Camp, my daughter had an unexplainable hive breakout from head to toe, and Benadryl didn't work, and a shot of epi didn't work, and a steroid didn't work, and her AWESOME pediatrician recommended this antihistamine ATARAX that she said was much more powerful than Benadryl. Can I try that? Has he heard of it? Does he think it will work?

The answer was: Sure, she can have Atarax. I'll write a script for 120 pills, with 3 refills, and tell her it is much stronger than Benadryl.

Oh, Dr. Hank thank you so much! Awesome! Let's try something new.

BUT WHY THE FUCK HAS IT TAKEN YOU NINE FUCKING YEARS TO ANSWER 'YES' TO THIS SAME MOTHER FUCKING QUESTION I HAVE BEEN ASKING YOU? WHY, WHY, WHY?

Because I decided to re-word the question?

Because maybe you got laid last night?

Sorry. Maybe that was inappropriate. But guess what happened?

My post-infusion reaction, due to the addition of Atarax to my drug cocktail diet, made ALL the difference today. It was much better than it had been in the past. And yes, I was 'out of it' all damn day. And no, I did not get a single thing done. But the only place on my body that had a reaction was my arms, wrists, and hands. Which were very red, itchy, and covered and in hives. But I put some heat packs on under some gloves, as this seemed to stop the hives which were worst on my wrists. And I slept all day. But that is OKAY.

We have potentially solved ANOTHER problem. When I say We, I say ME. Ugh.

The second question was, my insurance company has become a pain in the ass related to paying for Nexium. Even though the docs write it one way, the insurance company won't give me all that is written for, and charges me three times a month. I don't knoww what the deal is, but the question was: Prevacid gets released as an OTC drug on 11/10. May I please cancel the Nexium and take Prevacid instead?

And the answer was: Sure.

My third question will be asked and answered when I go to see him in 6 weeks. And that question is "What do you think about sending me to Gainesville to see Dr. Know It All about Crohns, just for a look-see?"

We will see if Dr. No has indeed turned into Dr. Yes.

Anybody know of a great Hanukah gift for a diabetic Orthodox Jew GI?

Anyone?

Yes, this is what I have resulted to: bribery.

Whatever it takes, amigos.

Whatever it takes.

Doctor Whackjob and the Aliens

~

So today, I went to a dermatologist.

For no reason other than, well, I've met my deductible for the year (imagine THAT), and I may or may not have a few suspicious looking spots, seeing as how I have skin the color of a storm trooper, covered in freckles from head to toe.

So off I go.

To meet Dr. Whackjob and the Aliens.

If you've ever been to a dermatologist (I hadn't, and it would have been nice to have known this), you take off all your clothes, and put on a gown.

Very reminiscent of going to the OB/GYN, but whatever.

So Dr. Whackjob comes in.

Followed by his five aliens.

I call him Dr. Whackjob for the following reasons:

1). He spent wayyyyyy too much time admiring and commenting on my gorgeously fabulous red hair. Yeah, it's gorgeously, fabulous, but dude, COME on, ENOUGH ALREADY!

2). He had on a tie that looked like somebody's tee shirt from a Grateful Dead concert. Not very doctor-ish.

3). He started asking about my Crohn's and suggested the following: that the doctors give me pregnancy hormones to make my body think that it's pregnant. (Sometimes, if you have Crohn's and you get pregnant, your body goes into remission during the pregnancy, then usually comes back after you give birth. In my case, this happened both times, at almost exactly the same times).

Okay, so here I am naked, and the last thing I wanted to do was insult this doctor who I heard was the best dermatologist in my area, in case I had a melanoma on my leg the size of Texas, and was really going to need to be nice to him for a long time.

So I just shook my head and said, "Sure". But he wouldn't stop, he wanted me to write down on a piece of paper the name of this hormone (which now resides in the Lake County landfill), and suggest to my GI that he give it to me, to try to convince my body that it's pregnant, and maybe it would stop my Crohn's symptoms.

And he concluded with, "It's just an idea."

Whoa.

ARE YOU FUCKING KIDDING ME?

It's just an idea?

I have a clinically diagnosed complication of a disease that I share with 249 other human beings on the planet, and you want me to propose "just an idea" to these doctors who are so completely educated on this ONE disease that they might just have me Baker Acted (Google it) to the nearest mental institution on the suggestion that they PRETEND to impregnate me so that my Crohn's might subside in NINE MONTH INTERVALS?

Because a dermatologist with a Grateful Dead tie said "It's just an idea."?????????????

Yeah.

Right.

Uh-huh.

I'll get right on that.

Anyway, back to the aliens.

So you lay on this table, nekkid except for the 'gown', and Doctor Whackjob is wearing these like 3D glasses that light up and he is scanning my body from head to toe, and every now and then he shouts out to Alien #5 a word that sounds like "Milla", or "Keysucker" or "Kleptomaniac" and she types all this into the Alien computer, and then Aliens #1, 2, 3, and 4, follow Dr. Whackjob's lead, picking up one of my limbs, and shouting out the same words and the location in which those words were found, like, "Kleptomaniac, lower right eye".

Honest to God, I felt like I had been kidnapped by Aliens, and they were examining a human for maybe the 10th time, and were logging what they had found.

It was freaking WEIRD, and that's all I have to say about that.

Oh yeah.

The news?

Allegedly, I am a dermatologist's worst nightmare.

Apparently, I have beautiful skin, albeit quite freckled, but no signs of anything amiss whatsoever, even that kleptomaniac eye of mine.

And he never has to see me again, unless I or one of my 'normal' physicians detects something has appeared from out of the blue or has changed.

Praise God that I have no signs of skin cancer.

And most importantly, Praise God that I don't have to see Dr. Whackjob and the Aliens again.

Hopefully, never, ever again.

Whew.

~

Status Quo

~
Recent 'progress'? in a nutshell:

Had my regularly scheduled Remicade on 10/6.

Had my regularly scheduled allergic reaction to said Remicade exactly 1 hour and 10 minutes later.

Had my oh-so-wonderful-gift-from-God-Nurse by my side the whole time.

The reaction was a 2 out of 10.

I think this had a lot to do with the fact that I had been on steroids for a whole month prior, due to our attempt to obliterate my sinusitis, ear infection, bronchitis, and asthma that kicked up out of nowhere.

I was on two oral antibiotics, one antibiotic injection, and three rounds of prednisone.

I had exactly 3 weeks to get better before my next Remicade, and guess what?

We did it.

The 'team'.

We got me better enough to have the Remicade.

After the Remicade, I continued to 'react' for 72 more hours.

This is becoming my new normal.

So now, when I have a Remicade infusion, I can't just block out one day that week.

I have to block out three.

Or four.

Or however long it takes for my body to stop attempting to reject the medicine that actually makes me pretty 'normal' the rest of the times.

Oh yeah, and we added a hematologist to my repertoire.

You know, just because I didn't have one.

Ha!

Considering that I have to have my blood drawn every quarter to test my liver function due to the Remicade, Dr. Primary (the sage Dr. Primary that he is), thought it might be a good idea to have a blood guy on board.

Fine by me!

So I go to see blood guy.

I like blood guy!

I can get blood drawn in blood guy's office, and get the results IMMEDIATELY!

Why haven't we thought of this BEFORE?????

Right.

So, after meeting Blood Guy, Blood Guy tells me he is SHOCKED at the state of my liver.

In a good way.

Says he can't believe I've been on Remicade for as long as I have, at the dosages that I have, and taken all the other drugs that I have, and have such a perfectly clean as a baby's liver.

OH PRAISE GOD!!!!!!!

Wonderful news!

YES!

I can actually go to a doctor, and there NOT BE A PROBLEM!

WOOHOO!

And.....

Blood Guy says he doesn't think I need B12, or Iron, or Calcium at this time.

He wants to 'wait and see'.

I am totally cool with that.

Loving Blood Guy.

Loving my TEAM!

My bowels are doing pretty good. (Thank you, Remicade).

My pain is being managed well. (Thank you, Dr. Pain).

My primary doctor is seeing me monthly and I have developed quite a nice relationship with him as well as his staff (Thank you, Dr. Primary).

I cannot complain right now.

Not this month.

There is a lot of emotional stress going on in my family and extended family right now, and Team Fallon definitely needs your prayers, but I have not seen this affect my Crohn's in any way, not so far anyhow.

(No, Billy Two Swords and I are not having problems -- everyone always assumes THAT!).

I will post more details about the prayer needs of my family later, when we get some more information, but suffice it to say, my dear, sweet, husband is going through the most difficult year of his life. And HE needs your prayers.

But thankfully, (that GOD guy again!) my health is stable enough at the moment that I am able to provide him with whatever he needs, whenever he needs it.

And to that, all I can say is:

AMEN.

Next Remicade treatment - 11/3.

Until then.........to God be the Glory!

No Pee For You!

I made the cut.

Dr. Pain trusts me.

I don't have to take drug tests when I go to get my meth anymore.

That would have been good information to have BEFORE I drank eleventy bottles of water in 6 minutes so I'd have enough pee.

But I won't complain.

We are working very well TOGETHER, Dr. Pain and I.

I talked to her about the breakthrough pain, and she increased the amount of methadone pills in my prescription, and told me just to add a dose here and there if and when I need it (again, don't worry, I am on a 2.5 mg dose - VERY SMALL), and if that didn't work, she would consider adding an additional nerve pill that alleviates my duodenal stomach pain next time.

All in all, easy peasey visit, didn't have to pee, nice to have a doc who doesn't think I'm a crackhead, and I'm all methed up and ready to go for another month.

Meth Lover

Okay, that's probably a bit extreme.

But after following Dr. Pain's explicit instructions to take the methadone every eight hours, whether I have pain or not, guess what?

No pain!

Or at the very minimum, very manageable and tolerable pain.

Never in a million years would I have guessed I would become a 'legalized' meth user, but I'll be damned, it's working.

I've had a couple of days of really bad duodenal pain that was not controlled by the meth, but I meet with Dr. Pain tomorrow, and will ask her what my options are for breakthrough pain.

Oh, and as an aside, I wore my brand new nineteen dollar low cut Old Navy Diva jeans to church today in my new 139 lb. size 10 smoking hot bod.

Just thought I'd throw that out there, cuz it's my blog, and well, I can!

Onward we trudge!

Watermelon Head

I'm alive today, thought you might want to know.

So today I am working on the computer, getting sleepy, will probably nap and read some.

I always keep my day after Remicade 'empty', so that I don't have to worry about anything.

Billy took care of the kids this morning, he's got the boat guy coming this morning to see what's wrong with it, and then he will take Jake to wress-a-ling practice tonight, so Reilly and I can just lay in my bed and watch tv together.

My voice is shot - side effects of all the benadryl and solumedrol (steroids), I am red and hot to the touch, but I do not have a fever.

Yesterday, Sue, my nurse, told me to take two benadryl before I went to bed last night, which I did, and to continue taking it today, round the clock until the reaction subsides.

I have started that already.

The reactions are most definitely better than they have been, and we've been tweaking it every time.

This time, I was in the bathroom across the hall, trying to pee, when the reaction started, and they didn't have a call button, so I stopped peeing, didn't even wash my hands, looked in the mirror and looked like I had a watermelon sized face the color of a tomato, and ran back to the lab while attached to my IV pole.

She was ready, stopped the Remicade, and administered all the meds, and waited about 45 minutes before starting again.

Is it weird that it feels better when she holds my hand throughout this whole process of hell?

Throughout the rest of the day, I would get fidgety or itchy, and she would add smaller doses of meds as she felt accordingly.

We'll get there.

No Poop For YOU!

~

Say it just like the Soup Nazi from Seinfeld:

No POOP for YOU!

I haven't pooped in eight days.

Yes, you are reading the right blog.

Little Miss Diarrhea has not pooped in eight days.

I am loving this!

No, I am not going to call my doctor.

No, I am not in any pain.

No, I do not have a fever.

No, I do not think there is anything 'wrong'.

My bowels used to be like this 'before' I had Crohn's.

So this is an awesome sign.

Our current protocol continues to work.

I am loving 'NOT' pooping.

No Poop for ME!

~

Lobster

Yesterday was Remicade day.

It went pretty smooth.

Had the reaction, Miracle Worker nurse was right there with the back-up meds, and I finished in record time - 4 1/2 hours!

And then I woke up this morning.

LITERALLY every part of my body is bright red, the color of a steamed lobster.

I have red sheer curtains in my dining room, and if I stood behind them, you wouldn't be able to see me.

That is how red I am. (okay, no redhead jokes now, that's not what I'm talking about!)

And, not only am I red, but I am scorching hot to the touch, but I have no fever.

Once again, I have hives on the palms of my hands, and the pseudo-electric current is slowly coursing through my body, but not like it does during the infusions.

When I woke up this morning, I could not move my arms or my legs.

But I took my time, and finally was able to shake them alive again.

I went ahead and medicated myself, called Miracle Worker Nurse so she could document the continued reaction for the file, and wholeheartedly agreed that I took the right meds, at the right dose, and to continue with them every four hours until the reaction goes away.

Suffice it to say, I will be dozing off very shortly.

And you thought this post was going to be about a scrumptious steamed lobster slathered in hot melted butter with a fresh baked loaf of French bread on the side?

Yeah, I wish it had been.

Sigh.

Really

~
Oh my knees are really hurting.

REALLY hurting.

Sigh.

As I was driving home from a friend's house with Jake this afternoon, I was listening to my contemporary christian radio station, and I heard "Bring the Rain" by MercyMe.

For those of you who don't know it, don't worry about it.

But it made me realize, that my entire life has been a battle.

Actually a series of battles.

I think I have one beaten, and then there is another one for me to fight.

A child of divorce.

A child of an alcoholic father I never knew, who died before I could connect.

A child of sexual abuse.

A child of rape.

And then an adult with an alcoholic husband.

And then an adult of divorce.

And then Crohn's Disease.

I have won every battle.

I am still fighting the last one.

But amazingly, I am still, and always be, a child of God.

He has brought the joy

and He has brought the glory,

and Lord Jesus

He is bringing the rain.

Eh

I got nothing better to say.

Then why the heck would I post?

I dunno.

It's my damn blog.

Just felt like it.

My knees and hips are throbbing.

Two Vicodin, Two Valium, Four Ibuprofen, a boiling hot jacuzzi bath, and a vibrating bed later, and they are still throbbing.

Because I have to take the steroids to get ready for Remicade on Monday.

YAY!

Woohoo!!!

Can't freaking wait!

Oh boy!

Okay, I will go away and shut my piehole now that I'm done complaining.

A whole bunch of a lot of damn good it does.

Which is why I try not to do it.

But it's just been a couple of those kinda days.

I'm done now.

Goodbye.

Guilt?

So we have returned from our vacation of a lifetime.

It is 1127 am EASTERN time.

I woke up at 10 am EASTERN time.

Highly unusual, for those of you who know me In Real Life.

But then again, that would be 7 am PACIFIC time.

Anyway.

I can't get out of bed.

I hurt all over.

My knees are throbbing.

My guts are raging.

I am two weeks behind on Remicade (remember? TFG????)

And I am starting to feel it.

Remarkably, I had two bad days on the 35 day trip.

Personally, I consider that to be miraculous.

I used to be better at math, but 2/35 seems like a very small percentage to me, even though I can't do it in my head anymore.

So why is this post entitled guilt?

Well, for those of you who know me In Real Life, you know what a go-getter I am, how I never stop, how I suppress the unsuppressable, how I never quit, never say die, and just plain suck it up.

Right now, I am staring at dust.

and dog hair.

and filth.

and bags upon bags upon bags that need unpacking.

and a 4 foot high stack of mail.

and an empty refrigerator.

and two monsters who are bouncing off the walls because they can't discern the difference between exhaustion and insanity.

and a husband who is already up, doing errands, mowing the grass, making a million phone calls, laying out chicken to thaw for dinner and asking me, 'when are you going to publix because there is NOTHING to eat'.

and a list of school supplies that need to be purchased.

and thank you notes that must be written.

and thank you gifts that must be bought with money that doesn't exist.

and 3,000 pictures that need to be edited and cropped for the scrapbook of a lifetime that will commence being created on the first day of school (I'm not THAT crazy that I would start THAT project TODAY).

and 12 more blog posts to be written to get everyone caught up on our trip before every miniscule detail escapes my memory.

and business battles that need to be fought with lots and lots of energy and fortitude.

and enemies that must be faced and beaten.

and I continue to lie here.

and I think I am going to continue to lie here, today, for as long as I possibly can.

So back to my original question.

Should I feel guilty?

For lying here for one day?

For going to Publix in five or six hours, instead of right this minute?

For letting the monsters watch whatever they want to watch on television today, since they haven't watched tv in 35 days?

For letting the house 'go' for one more day?

When healthy people go on vacation, do they take 'one' day to recover?

Or do they wake up in the morning and jump right on it?

I know the answer.

I used to jump right on it.

I used to be healthy.

THAT's Never Happened Before

Today I pooped my pants in Las Vegas.

And no, it wasn't at the CRAPS table.

Not So Bad

I had a Remicade infusion today.

It wasn't so bad.

On the scale of Remicade hell, it was about a 3. A 1 would be NO allergic reaction at all. My last treatment was the worst one I have ever had in 9 years, so that one was a 10.

One hour in to the infusion (like F'in clockwork), the reaction started.

They knew what to do, and five minutes of Remicade hell later, I was sound asleep from all the drugs, and woke up six hours later, when the infusion was just about finished.

I am tired, and my knees are in tremendous pain (from all the 'roids), but as we all know, I have meds for that, so I hope to rest and sleep soundly tonight as we all have a big day tomorrow, wrapping up loose ends for our big trip. (Details forthcoming).

Another Crohnie found my POOP blog today, and we have 'met', and I have guided her to this site.

God is good.
All the time.
All the time.
God is good.

He really, really, really IS.

Of Mice and Men

"The best laid plans of mice and men, often go awry...."

This is usually the case in my life.

But I must say, lately, our best laid plans seem to be going as they should, as planned.

Today, I met with Dr. Primary. He was the first doctor who gave us a slice of hope after my nine year GI, Dr. Hank, abandoned me. Today was my first follow-up appointment since then.

He was thrilled with my progress.

He was very happy that I was helped by a doctor he referred me to, and that I was progressing and continuing to progress.

I told him that I had met with Dr. Pain who he had referred me to, and that even though we were still in the experimental stage of what pain meds were going to work for what areas, I felt very comfortable with the addition of this specialist to my repertoire

He concurred with her modus operandi.

He was not at all surprised to hear that I was planning on separating from Dr. Hank, and in fact said to me, "I had a feeling you were heading in that direction, the last time I saw you." Actually, he seemed pleased to hear that I was going down this road. Doctors typically never say bad things about each other, but I could tell he was having as much difficulty dealing with the Jackass as I had been.

I told him I had already met with the new GI, and that I can't sever my relationship with Dr. Hank until we can solve the 'where in the hell can we get this girl her Remicade at a place that will work with her allergy to the drug so she doesn't die while she's infused with a drug that will potentially save her life' problem.

Dr. Primary said he had a very good relationship with the new GI, and that he was certain that we could figure something out, asking me how much time he had to solve this problem, between my next scheduled treatments and my next appt with Dr. Hank.

I told him he had 10 weeks.

Dr. Primary also said, there was no way that I should go to Shands (in Gainesville) every four weeks for Remicade, that was ridiculous.

I was very happy to hear him say that.

But he did agree that I should go to Shands for consultation and research opportunities.

He promised me that this was a small hurdle, that we can all work together to figure this out.

He also wrote me prescriptions that Dr. Hank used to write for me, but said "get those from your primary now." TFG!

I thanked him profusely, and said I was so very relieved to know that I now had a TEAM of physicians. He smiled and said, "you're welcome."

Not once did he refer to me as an albatross. I'm not a mind reader, but I don't think he was thinking of the word albatross during the entire length of the appointment.

Nor did he allude to the absurd notion that I was crazy, aka "situationally depressed".

Whew.

It is such a pleasure to see a physician who cares and wants to treat me and wants to heal me and wants to "first do no harm". A physician who is not going to 'split hairs with me' over whether I am suicidally insane, or just wanting to end my pain by inevitably ending my life. This guy doesn't want me to die. He doesn't want me to feel like I'm going to die. He wants me to live and thrive. He gives a damn. All of the new docs give a damn.

Now I just have to divorce the one who doesn't.

"The best laid plans.........."

TFG

WARNING

In case any of you missed the previous warning when you tried to enter this blog, I am warning you again.

This one is REALLY R-rated, because I am REALLY mad.

So you have been DOUBLY warned.

Sorry Pastors, Christian friends, aunts, uncles, whomever doesn't like the way I speak my mind, but this is how I am feeling right now.

So yesterday I finally went to see the Pain Management Specialist. She was kind, understanding, supportive, and ready to attack the situation. I was told to stop taking the Vicodin. I'm cool with that. It doesn't work anymore anyway, after nine years, it's time.

She has prescribed methadone.

I started to hyperventilate.

And visions of Heath Ledger and Anna Nicole Smith came to mind.

Dr. Pain said, "Mrs. Fallon, if you take the medicine AS PRESCRIBED, and you are a responsible adult who doesn't also chase her meds with VODKA and add a dessert of HEROIN, you will be FINE."

Whew.

So I took my first dose of methadone last night. (It is a VERY low dosage, by the way.) Didn't see Lucy in the Sky With Diamonds, wasn't drooling, and woke up this morning. So, so far, so good. I still have pain, but I'm supposed to be taking it three times a day, but that really isn't feasible with my lifestyle at this juncture (you know, when I have children to feed, and I have to drive them places), so we'll have to work this dosage schedule out, but at least she treated me like a person, which I appreciate immensely.

In addition to the methadone, she is going to add a nerve medicine (I don't know the name of it) at a later date, as well as pain patches for my knees. I left her office feeling hopeful and grateful and relieved.

And then there was today.

Today, I had what I thought was going to be my final appointment with Dr. Hank.

TFG.

Which also stands for "That Fucking Guy".

Yeah, I'm mad.

I went there with every intention of telling him that I was going to switch doctors, thank you for all that you have done, I'm going to Shands, but I still want to have my Remicade infusions at your lab, can I have your blessing, blah blah blah.

For the record, I do pretty well in situations of conflict. Unusually well. Some call me a conflict seeker. I don't think I "seek" it, I just don't avoid it. I face it head on, and usually I call myself a winner at the end of the day.

TFG

To summarize, because I am so angry, and my head is absolutely pounding at the memory of this appointment, and what I consider to be an absolute WASTE of thirty dollars that to be honest with you, I don't have to waste........

We reviewed the past four weeks and my 'status'. I told him about the changes in meds prescribed by Dr. Primary and Dr. Pain. He concurred. (Then why the FUCK didn't you prescribe them in the first place, JACKASS?)

We talked about "how are you doing (AND I QUOTE) upstairs"?

I looked him square in the eye, and said, "I don't think I ever had a problem UPSTAIRS."

He said, "I think you had and continue to have, situational depression related to an illness you cannot control."

I looked him square in the eye and said, "Dr. Hank, I almost killed myself, that's how bad the pain was."

He said, "Doesn't surprise me at all. That's a symptom of depression."

I said, "You call it depression, I call it AGONY."

He said, "I am not going to split hairs here. The important thing is that you are better."

NO! THE IMPORTANT THING IS THAT I HAVE DECIDED THAT YOU SUCK, BUT I CAN'T FUCKING FIRE YOU BECAUSE YOU ARE THE ONLY PERSON IN THREE COUNTIES WHO CAN INFUSE MY REMICADE, DAMMIT!

We get back to talking about the Remicade. He says, "So you're scheduled for Remicade next Monday, and then four weeks later."

I look at him in horror, and say, "I've just planned a six week vacation, because YOU told me we were on a 2-4-6-8-8-8-8-8-8-8 week schedule!"

He said, "No. Clearly, you misunderstood me."

TFG! I am not depressed, I am not suicidal, and I am DAMN sure not DEAF!

He continued with, "NORMALLY, that would be the case."

Readers, That has ALWAYS been my Remicade schedule. For NINE F'in years.

He went on, "But since it is YOU (meaning, ALBATROSS), you will be on a four week schedule. Period."

TFG

I told him that was going to work, that we planned our SIX week vacation to the DAY around my Remicade treatments.

And he sighed, and said, "Well i guess this time, it will be six weeks, but next time, it will be four."

TFG

And he had the decency to ask where we were going that would take six weeks.

And I told him.

And he told me I was nuts.

TFG

And I said, "You know what, I got out of the hospital, I suffered for another two weeks, I finally got better, and I said to myself, I have no idea how many tomorrows I have left, and I looked at those three most precious to me, and I said, we're doing it. We're going to the Grand Canyon.
I don't care about the money, I don't care that it sounds crazy, I don't care that we don't have jobs, I feel like this is what we as a family absolutely positively need to do."

And he said, "I'm proud of you."

What?

TFG

And then he spent fifteen minutes telling me all about the wonders of the Grand Canyon.

TFG

So I came home and Billy said, "how'd it go?"

I said, "I didn't fire him."

Billy laughed and said, "Chicken shit!"

And I said, "What the hell am I supposed to do? I can't get the Remicade in Clermont! What the hell am I supposed to do?"

Billy said, "Did you tell him you had seen the other doctor?'

"Nope"

"Did you tell him you want to go to Shands?"

"Nope"

"Why?

"Billy, have you met THAT FUCKING GUY? He is IMPOSSIBLE to talk to!"

"i know, but what are you going to do?"

"I have 10 weeks before I have to face him again."

The splendor of the Grand Canyon awaits, and dammit, TFG is going to be the last thing on my mind, I promise you.

Ugh.

TFG.

Eleven Hundred (1,100)

That is how much ceramic tile I mopped today, on my hands and knees.

Hmmmmmmmm

Someone is doing pretty well, considering.

And yes, I'm insane.

Cleaning the INSIDE of my house like crazy for my very-soon-to-be-SEVEN-year-old-daughter's POOL party tomorrow.

Like who is going to care if the tile was mopped by hand or by a mop?

Why am I telling this to my Crohnie followers?

Just to let you know that there is hope.

That you can have days where you feel well enough to mop 1,100 square feet of ceramic tile, be it by hand, or be it by mop.

Hope.

What a glorious word.

Conundrum

One of my most favorite words in the English language.

Conundrum.

I have others too.

Menagerie

Buffoonery

Quagmire

I think you get the drift.

So here is my conundrum, today.

I have pain.

No news there.

Not so-horrible-I-want-to-stick-a-hot-poker-in-my-eye-in-the-hopes-of-releasing-endorphins-pain, but significant pain nonetheless.

And I have pain meds.

Good ones, if you know what I mean.

They take the pain away.

But sometimes, they make me mean. (Or Mean-er, if you ask my husband).

And sometimes, they make me depressed.

And I have meds for that too.

And no, I really and truly believe that I do not have a prescription drug addiction problem. I would say that most definitely, I am a drug USER, but I don't think I am a drug ABUSER.

So the conundrum is.....

Take the pain meds and be comfortable and sometimes mean,

Or don't take the pain meds and be uncomfortable and irritably mean?

Or do whatever I want until Monday, when I finally meet with a pain management specialist in the hopes that we can get all my different pains in all my different areas treated with different meds?

And therein lies the conundrum.

Monday is four days away.

I think my family can endure four more days of some level of meanness.

At least I'm hoping they can.

Heckfire, maybe I'm just mean all the time, but I only notice it when I take the drugs???

Do NOT answer THAT!

Forgetfulness

Forgive me, friends.

I forget to post on this blog when things are going well.

Because this blog, for me, is about venting.

And when one is feeling well, one has no need to vent, right?

So what I'm trying to say is, I'm feeling pretty good.

Praise God....AGAIN!

The combination of new drugs, the restart of the Remicade treatments, and the addition of steroids has made me pain free.

Not symptom-free, but pain free.

I can live with symptoms. And I can live with some pain. But I cannot live like I was living before the pain went away. So I am just thankful that it did.

And the bet I made with God? I'm still keeping my end of the deal. I get up each and every day, and I am productive. I am not taking a single day for granted. Okay, sometimes I take a nap. But I'm pretty sure He's okay with that. Even HE rested on the seventh day, right?

I have my next Remicade treatment the last week of June. Not thinking about or worrying about it until it gets here. It is going to suck, but it will be temporarily sucky. And then it will be six weeks til the next one. And then eight weeks from thereafter.

It is going to take some time for me to get this new doctor/fire old doctor situation squared away. So I'm not sure exactly when I'm headed to UF Shands, but since I'm no longer considered 'emergent', there really is no hurry if my symptoms and pain are controlled.

I am headed to a pain managment specialist next week, at the urgency of all my physicians. I have different types of pain in different areas of the body, and not one pain medication works for all of them.....so off I go to a pain doc. I'm cool with that. I think it's a great idea, and I wish they had thought of it sooner. Oh well. Nothing ventured nothing gained.

I will try to keep posting even when things are going well.

Or, you can always check out my other blog, which is filled with laughter and mayhem, which I post every day:

http://poopinmypocket.blogspot.com

Releasing the Albatross

As I have posted in the past, I have been blessed for eight years with a remarkable GI, Dr. Hank, who specializes in Crohn's Disease.

For eight years, Dr. Hank has been there for me.

I have Dr. Hank's cell phone number.

Dr. Hank calls me in the middle of the night with test results.

Dr. Hank has asked me to assist him in launching a local chapter of CCFA (the Crohn's and Colitis Foundation of America).

I believe that Dr. Hank had a big part in the miracle conception of our two babies, as it is difficult if not impossible for Crohn's patients to conceive. Yes, I know God was the primary miracle provider, but God also enabled Dr. Hank with skills and knowledge.

Dr. Hank has pictures of those two miracle babies in his office.

To say that Dr. Hank has been an important and integral part of our lives over the past eight years is one of the biggest understatements I could ever make.

But in the past 60 days, after much prayerful consideration, after a period of agony and thoughts of suicide, and many, many, many lengthy discussions with Billy, Billy and I have decided that it is time to move on.

I am leaving my comfort zone of Dr. Hank, and getting a new gastroenterologist.

Specifically, I will be getting a whole TEAM of gastroenterologists.

I was 90% sure of my decision before I had my Remicade treatment two weeks ago.

But Dr. Hank himself made the final decision for me.

When the nurses called Dr. Hank to tell him the severity of my reaction to the Remicade, he eventually wandered over to the infusion lab.

As Dr. Hank walked in the door, this is how he greeted me:

"Well.....if it isn't my ALBATROSS."

Friends, I know what albatross means - "most legendary of all birds".

But let me illustrate for you what Dr. Hank's statement really meant to me:

According to Wikipedia, Charles Baudelaire said it best in a poem, using albatross as a metaphor for someone with a burden or an obstacle, that they have,

"an albatross around their neck"

Well, Dr. Hank. I am your obstacle, your burden, your ALBATROSS, no more.

If I had become such an obstacle, such a burden, such an ALBATROSS, all you had to do was tell me.

If you were as professional as I thought you were, you would have said to me, "I can no longer help you, but I can help you to find someone who can."

But he didn't.

Dr. Hank said, "You are going to have pain. You're going to have to live with it. Accept it."

To which Heather Fallon replied, "BULLSHIT. UNACCEPTABLE."

Dr. Hank's next words to me were, "There is NOTHING more that can be done for you."

To which Heather Fallon replied, "Nobody backs FALLON into a corner. Nobody."

The Albatross has been released.

The Albatross has found someone who not only BELIEVES I can be helped, but is EXCITED about helping me.

The Albatross' new doctor insists that I need to be consulted at UF/Shands Hospital in Gainesville, where the Southeastern Center for Inflammatory Bowel Disease is located.

The Albatross' new doctor believes that now that my disease has spread to my entire digestive system (yep, stem to stern), that I need to be seen by clinical researchers who are involved with cutting edge, up to the second, research on Crohn's Disease, in particular, the rarest of all versions of Crohn's Disease - duodenal Crohn's Disease.

The Albatross' new doctor says that there are approximately 250 people (yes, TWO HUNDRED AND FIFTY) people in the UNIVERSE with Crohn's Disease in the state that mine is now in.

The Albatross' new doctor thinks that Dr. Hank is a wonderful physician. But he also believes that Dr. Hank may not have ever seen someone with my disease in the state that it has evolved to, and he is having difficulty accepting that he personally cannot help me, and that I shouldn't be angry or disappointed, but that I should be thankful for the eight years that he gave me, and that Dr. Hank should understand and respect my decision to do all that I need to do to elongate my own life.

The Albatross is in complete agreement. I am so very thankful for Dr. Hank. I will cherish his involvement in my care for the rest of my days. I will remember him, honor him, and recommend him. I am no longer angry, no longer disappointed. I have given it up to God, and God has gifted me with the grace to forgive Dr. Hank for his professional shortcomings. Dr. Hank and I have different faiths, but we share the same God. Dr. Hank has prayed for me. He has told me so. I cannot harbor anger towards a man who has prayed for me, cared for me, healed me. I love him still, and I forgive him.

The Albatross' new doctor has a whole new perspective on the management of my illness.

The Albatross and her new doctor AGREE and have already established a COMMUNAL relationship, not one in which the doctor drives the boat, but one in which the patient and the doctor WORK TOGETHER to keep the patient ALIVE as long as possible, to keep the patient as COMFORTABLE as possible, to keep the patient OUT OF THE HOSPITAL as much as possible, to keep the patient AWAY FROM A SCALPEL for as long as possible.

The Albatross is no more.

The battle continues.

Heather Fallon is back.

Bring it, Crohn's Disease.

Bring it.

Reaction

~

It is 232 am, MY time.

Yesterday, I had my second loading dose of Remicade. For those of you who don't know what Remicade is:

It is a type of chemotherapy that is infused via IV into your body over a period of time, in my case, four hours.

It is called a TNF-blocker. TNF is a protein made by the brain. In Crohn's Disease and Rheumatoid Arthritis patients, our bodies make too much of this protein. This excess protein then attacks our bodies - with RA patients, it attacks the joints, sending the body into an inflammatory state. With Crohn's patients, it attacks the digestive system, mainly the intestines, sending the body into an inflammatory state.

For 9 years, I have been a Remicade patient. The only time I ever went off the drug was to attempt to get pregnant and have children. Giving all the praise to God, it worked, and we were able to produce two of the most beautiful, brilliant, HEALTHY babies EVER. And then, last year, a decision was made by the trinity (me, Billy Two Swords, and Dr. Hank), for me to stop taking the Remicade.

Here is why:

My immune system is fucked up. Hence, I have Crohn's Disease. For whatever reason, genetic, viral, environmental factors, who freaking knows, my immune system is on a mission to DESTROY my digestive system. No one knows why, it just is. The Remicade is an immunsuppressive. Meaning, it tells my immune system to stop working. Therefore, I am susceptible to a whole host of germs, infections, some I had never heard of before I got them: MRSA, pancreatitis, gastroenterities, pneumonia, strep infections on my FINGERS. Yeah, Heather Fallon doesn't a cold. She gets pneumonia. I had contracted too many secondary infections as a result of my suppressed immune system, that the trinity made the decision to stop the Remicade. After I stopped, I had surgery to correct a perianal fistula (which the Remicade was helping to heal, as well as settling my intestines into a milder state of disease). This seemed like a brilliant decision at the time. The surgery was a success (with the exception that I no longer have full bowel control, but whatever, I'm living with it. Most importantly, I'm still living.) And I then entered a symptom-free state of remission that I had not known in nine years. I was so healthy! I was a new person. And then in January. It was back. And it had moved. To my duodenum. And I was told that Remicade was my ONLY 'hope'.

In addition to having an already misbehaving immune system, my body REJECTS Remicade. The one time that I need my immune system to NOT work, to just shut up and be quiet and don't fight......it decides to attack the Remicade with a vengeance as it is being infused into my body.

Let me describe for you the vengeance that occurs EVERY SINGLE TIME I have a Remicade infusion.

Yesterday, I was pre-medicated with the following meds and doses (this might not mean much to some of you, but trust me, it is an ABSURD amount of medication):

50mg of Benadryl
100mg of Solumedrol
1 Valium

The nurse began to infuse the Remicade. I fell asleep.

EXACTLY one hour and 15 minutes later (like clockwork, happens EVERY F'in TIME),
the reaction started. It wakes me from a dead sleep. It begins in my toes. Like iodine dye that is injected into your body for imaging tests, it's that kind of feeling, that it goes through every vein in your body, except this isn't just a warm funny feeling. I've never had electroshock therapy before, but I think this might be pretty close. It is as if electric currents have been injected via my toes, then crawl up my legs, into every part of my body. By the time the current gets to my chest, my lungs feel like an elephant is sitting on them. Then I start to turn beet red. My face turns the color of a cooked lobster. I started screaming for help. Sometimes I break out into hives. Sometimes my arms and legs start to flail. Always I am sobbing and moaning. My blood pressure starts to bottom out, and my pulse goes through the roof. And then I start to scream, "MAKE IT STOP! MAKE IT STOP" "HELP ME" "HELP ME" "Dear God, PLEASE make it stop". This all takes place over a period of SECONDS. And it is the most terrifying experience. The feeling that something is taking over your body, and you have absolutely NO control.

The nurses were wonderfully quick, attentive, and ready. They immediately stopped the Remicade and increased my fluids. I got re-dosed with the following:

50 more MG of Benadryl

I did not go back to sleep, as most would have expected (including myself)

In the past, at this juncture of the treatment, the reaction usually stops and the infusion proceeds as if nothing happens. Not yesterday.

They re-started the Remicade.

Not more than 15 minutes later, I was in terrifying agony once again. They stopped it, increased the fluids and gave me:

Versid

Versid usually sends me into twilight la-la land.

Nope. Not this time. Still wide awake.

They re-started the Remicade.

The palms of my hands broke out into hives. Oh, I have gotten hives before, but never in the palms of my hands.

They gave me more Versid.

No change.

My throat started to close up.

They gave me another 100 mg of Solumedrol.

At least I was able to swallow again.

Still having the electrical current raging through me. Still having hives on my palms. Still crying and sobbing and saying, "I hate this, I hate this, I hate this, I am NEVER doing this again."

We are now three hours into an infusion which would ulitmately take six hours on this given day.

Even though they said they had given me the maximum of Benadryl, they went ahead and gave me one more 50mg dose of Benadryl. That is a grand total of 150 mg of Benadryl. I think most people would sleep for a week if they were given that much Benadryl. Oh how I wish I could have. Or just have slept through the remainingly anagonizing three hours.

It didn't have much effect.

I told them to FUCK it. Crank that damn Remicade up as high as it would go, and get me the Fuck out of there. In true Heather Fallon one-day-at-a-time fashion, I analyzed my situation. Yes I was in misery. But I knew, as soon as that drug was in me, and the infusion was OVER, I would feel fine. I just had to get through two more hours of absolute hell on earth. I looked at the bag of Remicade and calculated the two hours on my own. I started counting the drips. I knew I wasn't going to die, it was merely an issue of suffering. I wiped my tears and breathed deeply. I gave it up to God. Then it became 90 minutes. Then it became 60 minutes. I asked the nurse to call Billy Two Swords to let him know what was going on, and why I was running so late (it was kinda hard to talk with a swollen tongue and throat). I asked her to call my ride, my BFF K, and let her know what was going on, so she would know what time to pick me up.

And I prayed that God would get me through the next 60 minutes, because there was no one else or thing that could.

He did.

I got through it.

And here I am at 230 in the morning writing about it.

Remicade.

A drug that may save my life.

A drug that may kill me.

A drug that may give me lymphoma.

A drug that costs $15,000 per dose.

Why, you ask.

Why, do you do this?

It works.

That's why.

It sucks big, hairy, buffalo balls, but dammit, it works.

I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT

But dammit it works.

"Suffering produces endurance and endurance produces character and character produces hope" - Romans 5:3-4

God is good. All the time. All the time. God is good.

Four more weeks til the next one.

And not going to think about it until I get there with an IV in my arm.

That's how I roll.

One day at a time.

I have a little girl's birthday party to plan.

I have no-school summer activities to figure out.

I have a lengthy vacation road trip to coordinate.

I have cookies and cupcakes to bake.

I have church volunteering to do.

I have a God who needs to be glorified.

I have a bedroom renovation that will require my assistance.

I have a household to run.

I have a husband to snuggle with.

I have a dog who recently became blind in one eye who needs me.

I have lots and lots of hugs and kisses to give.

I have people who are counting on me for love and laughter and friendship and fellowship.

I have an example to provide, to all those who are suffering.

I have a life to live.

"There but by the grace of God, go I." - John Bradford

Lazarus and Betting with God

Since my miraculous 'recovery', my week has consisted of the following:

Cleaning house like a madwoman. Mad, as in, obsessed.

Errand running and shopping.

Attending worship for the first time in six weeks.

Traveling to Crystal River to see my parents.

Designing a new master bedroom suite.

Moving furniture and packing/unpacking closets to prepare for demolition of said new master suite.

Pilates.

Volunteering two hours at church to fold bulletins.

Purging hand me downs and packing eight huge garbage bags for the thrift store.

Enduring the NBA conference finals (trust me, this is most definitely an endurance test if you are married to my husband).

Buying groceries for our church food pantry.

Trying to eliminate the inches of drywall dust that cover every inch of our house due to the remodeling project.

Building a pirate ship.

It is important for me to note all of these things I have done in the past week, because I kinda made a bet with God.

When I thought I was going to die, even if it were at my own hands, I promised God I would never take another day for granted. That my idea of feeling 'okay', would someday mean I was feeling 'great'. If HE would just make me better than I was.

Well.

HE did.

And I am keeping my promise.

We had a bet, after all.

When I was at church the other day, folding away, Pastor C. saw me and had a huge smile on her face.

She said, "Heather! You are back! It's like you have risen from the dead!"

Amen, sister.

Just call me Lazarus.

Slow Fade

As difficult as it is for me, I need to write this post. It is a testimony, and as your Christian sister, I am obligated to share those.

Thirty days ago, I thought I had lymphoma.

Two weeks ago, I thought I had a bowel obstruction and was going to need emergency surgery.

One week ago today, I thought I was going to die at my own hands. It was the only way I knew to stop the pain.

It is true. Much as I hate to say it, write it, think it, remember it. I thought about it. I cannot lie.

But God saved me.

Like always.

And here's how He did it.

One week ago today.

I was wandering through the house, a zombie, in horrible, intractable pain.

Popping pills every few minutes. Lots of pills. Any kind of pill. Anything to kill the pain.

Nothing worked.

Nothing took the pain away.

Nothing.

Nothing took the pain away.

I could not eat.

I could not sleep.

I could not think.

I could not talk.

I could not sit.

I could not lie down.

I can't even tell you what I COULD do.

I watched my dear, sweet husband watch me suffer. That provided even more angst.

I started to seriously worry about his mental state. How strong was he? Could we get through this?

At some point, the song "Slow Fade" from Casting Crowns crept into my head and stayed there.

For hours upon hours.

This is what pounded in my head, over and over and over and over again:

Daddies don't just crumble overnight.

It's a slow fade.

Families don't just crumble overnight.

It's a slow fade.

Finally, I grabbed my bible.

"Slow Fade" still pounding in my head

I read the entire book of Job.

I prayed through the entire book of Job

As I read, and prayed, and "Slow Fade" kept pounding, God spoke to me through it all.

I had to trust Him.

He had always been there before.

And He would be there again.

Somehow, this was all part of HIS plan.

It wasn't up to me to know how or why, it just WAS.

The "Slow Fade" pounding stopped.

And 48 hours later, I was pain free.

Be Still and Know That I Am God - Psalm 46:10

Hope

Hello again, friends.

It is high time for me to thank all of you for your love, support, prayers, karma, uplifting words....we have felt them all, I promise you.

And for those of you who are getting tired of hearing the tribulations of Heather J., well, I am sorry.

I am getting tired of talking about them.

I am way too tired of living it.

Nobody wants it to go away more than I do.

But alas, it won't.

And more are wanting an update than telling me to shut my piehole, so here it goes.

Today we have hope.

We haven't had it in a very long time.

I have duodenal Crohn's Disease.

I knew that.

Not only do I have duodenal Crohn's Disease, but I have fistulizing Crohn's Disease.

Don't know what that is?

Look it up, or just trust me, it sucks.

I am in the .05% of a disease population of 1,000,000.

I have an incurable, chronic, debilitating illness that is extremely difficult to manage, to control, to diagnose, to maintain, to explain.

But I have a new team of doctors that is expanding by the day.

A fresh approach.

An out of the box way of thinking.

I have to regroup and accept some harsh realities, but I do not have to give up.

I will never be healthy.

I will never run a marathon.

But the reality I have today will not be my only reality.

I will never surrender.

To God be the glory.

And to Team Fallon - can't imagine three stronger warriors to be on my side.

No matter what the battle.

Faithfully,

HJF

And......

We are headed to a general surgeon consult in Clermont tomorrow at 830 am.

Praise God....

Dr T. was awesome.

Not ruling anything out....pancreas/liver/heart/PID/Crohn's.....apologized profusely that he didn't have an immediate answer for us.

Said the stainless steel coils could be plausible.

Said that all the imaging tests I have had may not show the whole picture.

Did not dismiss my pain as imaginary.

Treated me like a real person.

Wrote a script for some Valium so hopefully I can rest.

Still waiting for OB GYN to call me back....

Onward we trudge.

Just Maybe

I have an idea.

I think I know what it could be.

Could my body be rejecting the stainless steel coils that were implanted in my tubes in March?

Maybe?

If so......

Could be such an easy fix........

Calling Dr. Ashley right now..............

Daktir Oknahd and the Descent Into Indian Madness

So.

Everyone is already painfully aware of my painful circumstance.

All I have been trying to do is put out the fire in my stomach. Nothing seems to be working. I might get an hour or two of respite, but that's it.

I am headed to Doctor Primary in the morning. I will not be denied an answer, another option.

In the meantime, I had to go for my independent observation by a psychiatrist for my disability application.

So there I go.

To Daktir Oknahd.

(Please note that this is my blog, and I reserve the right to be stereotypical or offensive. If you don't like it, go the hell away.)

So Daktir Oknahd says to me: "Aaaaah... You ha brane inyuree?"

GIRL WITH FIRE IN HER GUT: "No. I do not have brain injury."

Daktir Oknahd: "Aaaahh.....No?"

GIRL WITH FIRE IN HER GUT: "No. I have Crohn's Disease."

Daktir Oknahd: "Aaaahh......ehhhhh????? You ha brane inyuree?"

GIRL WITH FIRE IN HER GUT ABOUT TO PUMMEL HER FISTS INTO THE FACE OF DAKTIR OKNAHD: "Hello? I have Crohn's Disease. Intestines? Inflammatory Bowel Disease? Hello? Are you a doctor? Or did you just stay at the Islamabad Holiday Inn Express last night?"

Daktir Oknahd: "Aaaahh......" (and then she wrote down the following)

brain injury? corns disease?

We proceeded with this "Aaaaaaaaaaaaahhhh.....ehhhh????" nonsense for 15 minutes or so.

She asked me if I ever wanted to harm anyone. I lied. Since yes, I wanted to harm HER....but I told her No.

She asked me if I ever wanted to hurt myself. I told her of course not, I just wanted to feel BETTER. Why would I want to hurt MORE?

She insisted that she had to ask these questions of everyone, that she was only doing her job.

When I told her about my condition, my surgeries, my treatments, she had absolutely no idea what I was talking about.

When I said I was on a medication that HAD TO BE INFUSED....she made me write the words down.

I pointed to my veins in my arm, and said, "Hello???? I....V....?????"

Daktir Oknahd said, "I....V.....M.....?"

HELLO?

I.

V.

!!!!!!!


I don't think this "MD" had ever heard of Crohn's Disease.

Since people in Dubai don't get it. Duh.

Is this my life?

Seriously?

Is this my life?

Is this a bad television episode?

One Month

I was just re-reading my blog.

It is difficult to grasp that I have had this pain for thirty days.

How much longer must I suffer?

And all I can do is look at my poor, sweet husband, who has been watching me wither away. He loves me so much. And he wants so desperately to fix me. And he is as scared as I am, if not more so. I fear that I am dragging him down with me into a pit of agonizing despair. It is so difficult for him to remain strong for the children. I am supposed to be the strong one. It has always been me who has carried the emotional load. Everyone tells me so. Everyone. Heather, you are the strongest person I have ever known.....

Not now.

Not today.

Not in awhile.

The doctors have told me there is nothing they can do for me. I cannot eat anything. Nothing kills the pain. What am I supposed to do? Just sit here and cry and moan and shrivel into NOTHING?

NOTHING?

And I'm not even dying or anything. Or so they tell me. They believe I have the pain, but they don't know why. That they've done all that they can do. Why is this so hard for me to accept?

I want to lie in my bed, with my husband, and my children, and just hug. And just be loved on. Like a puppy. I just want them to pet me like they would a new puppy.

Perhaps

I think I know what dying feels like.

Lord, I pray that I am wrong.

Honestly, this is a pain like no other.

The only thing that takes away the raging pain in my stomach is images of the faces of the three most precious to me. I cannot bear the thought of being without them, them without me. I am so madly, deeply, passionately in love with my husband, my daughter, my son. They have given me the life once thought not possible. A life filled with laughter and joy. A happiness fulfilled. They are who I am. I am who they are. We are one. We wouldn't be the same if we were only three.

I have bragged in the past that I don't cry.

I am crying now.

I don't want to write my funeral instructions.

I don't want to hurt.

I don't want to see the pain of the faces who are watching me suffer.

I don't know how to bear this.

Heal me God.

Please.

Home

Hello, friends.

I am home.

As I write this I am shaking like a leaf.

After 10 days in the hospital, I feel like an astronaut touching the earth for the first time since orbit.
Shaky, indeed.

I don't have much to say, really.

I can tell you what the doctors told me, and did.

I have a stricture (narrowing) in the area between my stomach and small intestine.

This causes me great pain, and my food takes eons to completely digest.

They cannot, or will not operate on this area.

I am not a surgeon.

But I was told by one that if I had this surgery, I would die.

Just like that.

That's what he said.

I think it is because of the risk of infection, and my already warped immune system that doesn't know how to behave.

That being said, I wasn't really given any choices.

I am now back on Remicade.

A drug that is infused into your body over a period of time, like chemotherapy.

A drug that consists of mouse antibodies.

A drug that my body chooses to attack and reject each and every time it is administered.

A drug that may ultimately kill me.

A drug that potentially may elongate my life.

So those are the facts.

Please don't ask me how I feel.

I haven't quite figured that out yet.