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.
Monday, June 29, 2009
Thursday, June 25, 2009
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.........."
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.........."
Tuesday, June 23, 2009
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.
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.
Friday, June 19, 2009
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.
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.
Thursday, June 18, 2009
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!
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!
Wednesday, June 17, 2009
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
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
Friday, June 12, 2009
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,
Well, Dr. Hank. I am your obstacle, your burden, your ALBATROSS, no more.
The Albatross' new doctor has a whole new perspective on the management of my illness.
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."
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 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.
Tuesday, June 2, 2009
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
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
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