~
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!
~
Tuesday, November 10, 2009
Thursday, November 5, 2009
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.
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.
Wednesday, November 4, 2009
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.
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.
Tuesday, October 20, 2009
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.
~
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.
~
Thursday, October 15, 2009
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!
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!
Monday, September 21, 2009
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.
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.
Sunday, September 20, 2009
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!
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!
Subscribe to:
Posts (Atom)
