Before I start, I should explain something.
If you are sick, you trust your doctor and their office to make the right decisions for you. To call in the right medication to the pharmacy, to know what medications you are on, what will interact with your medications, things like that.
Odds are, since a normal person only goes to a doctor once or twice a year, they can't screw much up.
Things are different for people like me.
I see a Pain Specialist 3 times a month.
I am in the Infusion Center every week, for 2 days in a row, 6-8 hours a day.
I have 2-3 days to recover from my infusions, due to the fact that I'm allergic to them. (Aseptic Meningitis)
I have to see my Neurologist 2 times a month.
Then, add in procedures for my back and neck, visits to my Regular Doctor, and time spent in the Pharmacy, and guess what?
It feels like I have a full time JOB.
The point I am attempting to make is, I think I had more "down time" when I ran a small business! Being chronically ill is exhausting.
So, that point made, imagine spending your entire day in pain, just leaving the doctor's/pharmacy/hospital, picking up your kids from school, and when you check the mail, you get a notice that the ONLY pain medication that actually works has been denied by your insurance company.
No biggie, right? I should just be able to call the doctor's office, tell them what happened, and they will send over some magical paper that explains that I NEED this certain medication, and poof, everything will be fine in a week or so.
In a perfect world, that would be the case.
Here's how the process of getting an "expensive" medicine approved is supposed to go:
1. Take the medication to the pharmacy, and they tell you that your insurance company has denied it.
2. The pharmacy is SUPPOSED to fax a letter to your doctor's office, informing them of the denial, and they can either give you your prescription back, or keep it until the medication is approved.
3. The doctor's office SHOULD replace your prescription with something that IS covered, and then start the "Prior Authorization" (PA) process for the medication you were originally prescribed..
4. Within 5-7 days, you get a call from the pharmacy letting you know that your prescription is ready.
That's the "poof" I was talking about. Seems easy, right?
The problem I have been having is, depending on people to do their job.
Okay, let me get back to the headache, and try to explain how all of this comes into play.
Where was I?
Ah, the RHIZOTOMY.
After 2 cervical facet injections, one of which nearly scared me away from the pain specialist altogether, I was ready to fix this headache.
It had been an entire year of pain. Unreal.
There is no long descriptive story about the Rhizotomy. I was heavily sedated, and don't remember anything until I came out of the room.
I was told that I would know the SECOND that I was done whether or not it worked.
I thought I knew what to expect, but yet again, as seems to be the case when I get my hopes up, I was wrong. Again.
When I came out of the room after the Rhizotomy, I could still feel my headache pain. I was worried sick, because I actually had a new pain.
The right side of my head was now ON FIRE. A horrible burning sensation had stemmed from the procedure.
I panicked. Not a little bit, either.
I started to cry, uncontrollably, in the recovery chair. This drew the attention of the anesthesiologist, who came to check on me. When I explained that I was still in pain, and thought that I was supposed to feel better immediately, he looked confused. He sent the Medical Assistant over to see me.
I got the "You have to give it time..." and when I asked how MUCH time??? The answer I got sent me into a downward spiral. "4-6 weeks."
My poor husband. I was discharged a weeping mess. AGAIN.
This time, he didn't wait for me to calm down to ask me what was wrong. He could tell I was still in pain, and got my verification. See, he was under the same impression I was. That once the procedure was done, I would absolutely KNOW that it worked.
So, he did what any loving husband would do. He wanted someones head on a platter.
He asked for the doctor, or anyone that could tell him what went wrong. He wanted an explanation, anything that would explain my pain. He got me comfortable in the car, turned on the AC, and paced back and forth while the office staff got more and more uncomfortable. When they realized he wasn't leaving until SOMEONE talked to him, they sent out the Medical Assistant.
The MA explained that in "most cases" the nerves react immediately, and a patient can tell that the procedure worked. In other cases, it can take 4-6 weeks to work. She folded and rung her hands, as I crawled out of the parked car. I had heard what she said, and wasn't happy.
I apologized for being so upset, and told her that I had looked forward to this day for so long, because I thought I would be out of pain. That was all I wanted. I had gotten my hopes up, and really shouldn't have.
My husband went into the office, made another follow up, and we left.
An entire year had gone by, with no pain relief.
So, I don't mind saying this now, since I survived it, but I got depressed. Pretty badly.
My husband packed me in the car, and we disappeared to Assateague Island for a day.
Alright, earlier I mentioned the medicine. Here's the HELL part I'm talking about.
At any doctor's office, there is a staff member, (presumably more than one) that is in charge of PA's (Prior Authorizations), referrals to other doctors, and getting procedures approved by your insurance company.
At my neurologist's office, I have no issue with this. The get me where I need to be, when I need to get there.
My problems started back in July. Since I have to be on pain medication 24 hours a day, I have a Pain Specialist for reason. This is what they do for a living. I was hoping for procedures to lessen or eliminate my pain, with the goal to come off of every pain medication I am on, so my body didn't develop a physical dependence.
Since the procedures didn't work, I asked to go on "Long Acting" pain meds instead of short acting (ie. Percocet, Norco, Morphine, etc.) I hate having Percocet (oxycodone) laying around my house with kids around!
So, I was written a scrip for long actings, and a small scrip of short actings for breakthrough pain. I picked it up at the pharmacy with no issue.
Since it has to be titrated upwards, every month the prescription has to be upped, until a good level of pain relief is achieved.
Well, the next month, my prescription was denied. With the cost being over $900 for the month, I couldn't afford to just pay cash for it, so they faxed a denial letter over to the Doc, who is supposed to send a PA over to the Insurance company, and within a week, I should have my scrip.
This DID NOT happen. The pharmacy did their job, but when I called the doctors office, they explained to me that they had not sent over the Prior Authorization form yet.
Here's the timeline of how this went:
July 18- Received the prescription for LONG ACTING pain medicine.
(I was denied the same day, and contacted the Pain Doc's Office)
July 21-Called the PS (pain specialist) to confirm that they had sent over the PA form.
(I had to leave a message, because NO ONE gets to talk to the girl in charge)
August 10th- Received a denial letter in the mail from my insurance company, explaining that I could "APPEAL" the decision. I opted for and "EXPEDITED APPEAL" which would give me an answer in 72 hours....IF, and only IF the doctor's office got the right paperwork faxed over to my "APPEALS COORDINATOR"
August 18th- Made a call to the Appeals Coordinator, and she had received NOTHING from my doctor's office. Nothing.
***At this point, it had been a month since I was written the prescription. I was in horrible pain, and taking MUCH less medication than I should have for 2 reasons. 1) I hate pain medication. 2) I had to spread 2 weeks of medication out over a MONTH.
So, pause on the timeline for a minute. I am doing all of this fighting with the insurance company, and don't have any information as the MIDDLE MAN in the transaction.
So, at my next appointment, I involve the doctor. I show him my notes...( I am an AVID note taker) Names, dates, phone calls, etc.
I explain that I don't have the fight in me when I am in THIS MUCH PAIN to do all this work. It's bordering ridiculous.
So, I thought to myself, "How do I get OFF of the pain meds altogether, so I don't have to do this anymore?"
FIX THE UNDERLYING PROBLEM!
So, my husband and I discuss other options for this headache.
How do we just MAKE THE PAIN GO AWAY? That's all I want. No pills, no doctors, just get rid of the headache.
It's horrible! I spend my days sensitive to light, I can't brush my hair, and by now, I'm avoiding taking a shower to wash my hair. I used to LOVE my hair. It has now reached my waist, and is a dreaded up mess, because I can't take care of it at all.
I don't even remember now what month it was, but in the middle of all of this, I lost sight in my right eye.
Yup, JUST WENT BLIND. Scared to death, I was sent to the infusion center immediately, to dose me full of steroids, in hopes that it was just inflammation.
Okay back to the timeline:
Now Blind in my right eye, dealing with a full blown migraine 24 hours a day, unable to sleep in my bed, and I can't even have the window down in the car, because the wind MOVES my hair and puts me in excruciating pain....
August 20th: We decide to find a surgeon that will cut the nerve.
*Of course, the one Doctor that does this, DOESN'T TAKE MY INSURANCE*
So, we look farther, and decide to get me into Johns Hopkin's Neurosurgery department, and pray they can do it. I live 20 minutes from Hopkin's, so this should be EASY, right????
NOPE. The same "Prior Authorization" girl in the office is in charge of this department as well.
Okay, so, I will skip over the bad parts. I will fill them in later, but I am getting ANGRY just thinking about it. It's been 4 months.
Time on Deck: November 15th, 9:18am. - I still don't have an appointment with Hopkin's.
FOR MY HEADACHE, ALL I NEED IS *ONE* SURGEON TO CUT A NERVE.
I know it's a little more involved than that, but dammit, with 2 other diseases, my life would be SO much better if I could just get one guy to cut a hole near my spinal cord, and destroy this nasty little nerve that is making my life hell.
So, I will call every day, until I have an appointment.
Oh, and I've decided to "name" the Occipital Nerve that has gone haywire, after the girl that hasn't done her job. Yup. I'm that pissed off. I won't let you know her name just yet, but if I find out that she could have done this MUCH sooner, I will call them all out on the carpet.
If you are sick, you trust your doctor and their office to make the right decisions for you. To call in the right medication to the pharmacy, to know what medications you are on, what will interact with your medications, things like that.
Odds are, since a normal person only goes to a doctor once or twice a year, they can't screw much up.
Things are different for people like me.
I see a Pain Specialist 3 times a month.
I am in the Infusion Center every week, for 2 days in a row, 6-8 hours a day.
I have 2-3 days to recover from my infusions, due to the fact that I'm allergic to them. (Aseptic Meningitis)
I have to see my Neurologist 2 times a month.
Then, add in procedures for my back and neck, visits to my Regular Doctor, and time spent in the Pharmacy, and guess what?
It feels like I have a full time JOB.
The point I am attempting to make is, I think I had more "down time" when I ran a small business! Being chronically ill is exhausting.
So, that point made, imagine spending your entire day in pain, just leaving the doctor's/pharmacy/hospital, picking up your kids from school, and when you check the mail, you get a notice that the ONLY pain medication that actually works has been denied by your insurance company.
No biggie, right? I should just be able to call the doctor's office, tell them what happened, and they will send over some magical paper that explains that I NEED this certain medication, and poof, everything will be fine in a week or so.
In a perfect world, that would be the case.
Here's how the process of getting an "expensive" medicine approved is supposed to go:
1. Take the medication to the pharmacy, and they tell you that your insurance company has denied it.
2. The pharmacy is SUPPOSED to fax a letter to your doctor's office, informing them of the denial, and they can either give you your prescription back, or keep it until the medication is approved.
3. The doctor's office SHOULD replace your prescription with something that IS covered, and then start the "Prior Authorization" (PA) process for the medication you were originally prescribed..
4. Within 5-7 days, you get a call from the pharmacy letting you know that your prescription is ready.
That's the "poof" I was talking about. Seems easy, right?
The problem I have been having is, depending on people to do their job.
Okay, let me get back to the headache, and try to explain how all of this comes into play.
Where was I?
Ah, the RHIZOTOMY.
After 2 cervical facet injections, one of which nearly scared me away from the pain specialist altogether, I was ready to fix this headache.
It had been an entire year of pain. Unreal.
There is no long descriptive story about the Rhizotomy. I was heavily sedated, and don't remember anything until I came out of the room.
I was told that I would know the SECOND that I was done whether or not it worked.
I thought I knew what to expect, but yet again, as seems to be the case when I get my hopes up, I was wrong. Again.
When I came out of the room after the Rhizotomy, I could still feel my headache pain. I was worried sick, because I actually had a new pain.
The right side of my head was now ON FIRE. A horrible burning sensation had stemmed from the procedure.
I panicked. Not a little bit, either.
I started to cry, uncontrollably, in the recovery chair. This drew the attention of the anesthesiologist, who came to check on me. When I explained that I was still in pain, and thought that I was supposed to feel better immediately, he looked confused. He sent the Medical Assistant over to see me.
I got the "You have to give it time..." and when I asked how MUCH time??? The answer I got sent me into a downward spiral. "4-6 weeks."
My poor husband. I was discharged a weeping mess. AGAIN.
This time, he didn't wait for me to calm down to ask me what was wrong. He could tell I was still in pain, and got my verification. See, he was under the same impression I was. That once the procedure was done, I would absolutely KNOW that it worked.
So, he did what any loving husband would do. He wanted someones head on a platter.
He asked for the doctor, or anyone that could tell him what went wrong. He wanted an explanation, anything that would explain my pain. He got me comfortable in the car, turned on the AC, and paced back and forth while the office staff got more and more uncomfortable. When they realized he wasn't leaving until SOMEONE talked to him, they sent out the Medical Assistant.
The MA explained that in "most cases" the nerves react immediately, and a patient can tell that the procedure worked. In other cases, it can take 4-6 weeks to work. She folded and rung her hands, as I crawled out of the parked car. I had heard what she said, and wasn't happy.
I apologized for being so upset, and told her that I had looked forward to this day for so long, because I thought I would be out of pain. That was all I wanted. I had gotten my hopes up, and really shouldn't have.
My husband went into the office, made another follow up, and we left.
An entire year had gone by, with no pain relief.
So, I don't mind saying this now, since I survived it, but I got depressed. Pretty badly.
My husband packed me in the car, and we disappeared to Assateague Island for a day.
Alright, earlier I mentioned the medicine. Here's the HELL part I'm talking about.
At any doctor's office, there is a staff member, (presumably more than one) that is in charge of PA's (Prior Authorizations), referrals to other doctors, and getting procedures approved by your insurance company.
At my neurologist's office, I have no issue with this. The get me where I need to be, when I need to get there.
My problems started back in July. Since I have to be on pain medication 24 hours a day, I have a Pain Specialist for reason. This is what they do for a living. I was hoping for procedures to lessen or eliminate my pain, with the goal to come off of every pain medication I am on, so my body didn't develop a physical dependence.
Since the procedures didn't work, I asked to go on "Long Acting" pain meds instead of short acting (ie. Percocet, Norco, Morphine, etc.) I hate having Percocet (oxycodone) laying around my house with kids around!
So, I was written a scrip for long actings, and a small scrip of short actings for breakthrough pain. I picked it up at the pharmacy with no issue.
Since it has to be titrated upwards, every month the prescription has to be upped, until a good level of pain relief is achieved.
Well, the next month, my prescription was denied. With the cost being over $900 for the month, I couldn't afford to just pay cash for it, so they faxed a denial letter over to the Doc, who is supposed to send a PA over to the Insurance company, and within a week, I should have my scrip.
This DID NOT happen. The pharmacy did their job, but when I called the doctors office, they explained to me that they had not sent over the Prior Authorization form yet.
Here's the timeline of how this went:
July 18- Received the prescription for LONG ACTING pain medicine.
(I was denied the same day, and contacted the Pain Doc's Office)
July 21-Called the PS (pain specialist) to confirm that they had sent over the PA form.
(I had to leave a message, because NO ONE gets to talk to the girl in charge)
August 10th- Received a denial letter in the mail from my insurance company, explaining that I could "APPEAL" the decision. I opted for and "EXPEDITED APPEAL" which would give me an answer in 72 hours....IF, and only IF the doctor's office got the right paperwork faxed over to my "APPEALS COORDINATOR"
August 18th- Made a call to the Appeals Coordinator, and she had received NOTHING from my doctor's office. Nothing.
***At this point, it had been a month since I was written the prescription. I was in horrible pain, and taking MUCH less medication than I should have for 2 reasons. 1) I hate pain medication. 2) I had to spread 2 weeks of medication out over a MONTH.
So, pause on the timeline for a minute. I am doing all of this fighting with the insurance company, and don't have any information as the MIDDLE MAN in the transaction.
So, at my next appointment, I involve the doctor. I show him my notes...( I am an AVID note taker) Names, dates, phone calls, etc.
I explain that I don't have the fight in me when I am in THIS MUCH PAIN to do all this work. It's bordering ridiculous.
So, I thought to myself, "How do I get OFF of the pain meds altogether, so I don't have to do this anymore?"
FIX THE UNDERLYING PROBLEM!
So, my husband and I discuss other options for this headache.
How do we just MAKE THE PAIN GO AWAY? That's all I want. No pills, no doctors, just get rid of the headache.
It's horrible! I spend my days sensitive to light, I can't brush my hair, and by now, I'm avoiding taking a shower to wash my hair. I used to LOVE my hair. It has now reached my waist, and is a dreaded up mess, because I can't take care of it at all.
I don't even remember now what month it was, but in the middle of all of this, I lost sight in my right eye.
Yup, JUST WENT BLIND. Scared to death, I was sent to the infusion center immediately, to dose me full of steroids, in hopes that it was just inflammation.
Okay back to the timeline:
Now Blind in my right eye, dealing with a full blown migraine 24 hours a day, unable to sleep in my bed, and I can't even have the window down in the car, because the wind MOVES my hair and puts me in excruciating pain....
August 20th: We decide to find a surgeon that will cut the nerve.
*Of course, the one Doctor that does this, DOESN'T TAKE MY INSURANCE*
So, we look farther, and decide to get me into Johns Hopkin's Neurosurgery department, and pray they can do it. I live 20 minutes from Hopkin's, so this should be EASY, right????
NOPE. The same "Prior Authorization" girl in the office is in charge of this department as well.
Okay, so, I will skip over the bad parts. I will fill them in later, but I am getting ANGRY just thinking about it. It's been 4 months.
Time on Deck: November 15th, 9:18am. - I still don't have an appointment with Hopkin's.
FOR MY HEADACHE, ALL I NEED IS *ONE* SURGEON TO CUT A NERVE.
I know it's a little more involved than that, but dammit, with 2 other diseases, my life would be SO much better if I could just get one guy to cut a hole near my spinal cord, and destroy this nasty little nerve that is making my life hell.
So, I will call every day, until I have an appointment.
Oh, and I've decided to "name" the Occipital Nerve that has gone haywire, after the girl that hasn't done her job. Yup. I'm that pissed off. I won't let you know her name just yet, but if I find out that she could have done this MUCH sooner, I will call them all out on the carpet.
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