"Wow Em! You look green!"
--Jeannine, my best friend since 7Th grade, remarking on how I looked last Thursday when I was 'crashing'--
"Well, I've seen you pale recently, but it's been a long time since I saw you looking a different COLOR!"
--Jeannine, commenting Wednesday evening on how I looked last week--
Well, for some reason Feedburner has been a bit tempermental. The post I most wanted to go out recently letting folks know I was down for the count, did not got out to subscribers. Sooo, you'll have to go to my blog itself to read Part I of Crash, Boom, Boom!
Warning: Part II of Crash, Boom, Boom! which follows is definitely a rant. I'm frustrated, tired, worn down and just plain grumpy. However, the post is worth a read if you want to know the answers to such burning questions as: What does my neck pain feel like? Why is being chronically ill a full-time job? Why do we need a serious makeover of our health care system? And, a question I cannot answer, why are some doctors so hateful? (This is NOT a new question for me--I'm not sure why it even surprises me anymore when I am treated so miserably).
We DID since then figure out the cause of my 'crash'. Turns out it was the Neurontin--the medication I was trying for neuropathic pain. Since stopping the medication we are now certain is was making me worse. Oddly, my pain is better off of the medication than it was on it! I'm still feeling pretty miserable, but I'm not nearly as sick as I was and I was able to visit with my Uncle on Monday and Tuesday--just in much more limited time slots than I would have liked.
What makes it so hard to discern what is causing what with me is that I have basically the same reaction to everything. If I do not tolerate a medication or treatment, I have the same constellation of symptoms--basically an ANS storm and a lot of looking green! So, it really doesn't matter WHAT the side effects are supposed to be for the 'normal' population, I will most likely react with and ANS system going nuts, as I did this time around. It's also hard because we never quite know when the medication will build up in my system enough to create a reaction--this time it was about three weeks, which makes sense for a drug like Neurontin, which takes about a month to know whether it is working or not.
I give my mom all the credit this time for her 'mother's intuition' in solving the puzzle. By Friday of last week I was so sick and pale (your choice of color--gray according to my mom, green according to Jeannine), that it seemed unlikely it was the antibiotics, as I had not increased my dosage.
I put in a last minute email to my ANS specialist hoping to catch him Friday evening before he left the office (he often emails around 6:30), but quickly got an out-of-office reply. Just my luck!
I opted, on Friday night, not to take the Neurontin.
I was up all night until 5 am, feeling agitated, anxious, jittery and could not sleep. It was as if I was having some sort of withdrawal symptoms. I knew to wean off of this medication to avoid a risk of seizures, but I was taking the lowest dose possible. So weaning, in effect, meant going to a dosing schedule of every other day for a few days.
I was so relieved on Saturday afternoon when I woke up and logged on to my computer only to hear the familiar Gmail 'beep' signifying a new email from none other than my wonderful ANS doctor. He happened to be back from his trip and on email--thanks be to God.
He said based on my response to the Neurontin I should definitely stop it, and could most likely stop it abruptly with no problems.
I emailed him back, hoping he might be on email later that day to tell him what had happened to me off of the drug (a call into the pharmacist suggested that my symptoms were possibly withdrawal so I needed guidance on whether or not to take the medication every other day instead of stopping abruptly). I also left him a voicemail, hoping he would call. I DID NOT want to have to page him, as he was NOT the prescribing doctor for this medication.
As Saturday progressed we felt more and more uncertain as to whether or not I should take the Neurontin or not. I was super sick on the medication and very sick going off of it. What was the best strategy? Stop it and get it over with? Or take another dose every other day and keep some in my system? I leaned towards just getting it out of my system, but dreaded another night like the previous one.
I did not hear back from my specialist, and at Mom's suggestion paged the local pain clinic and doctor who had prescribed the drug.
The following enraging discussion ensued:
Doctor: "Yes?"
Me: A quick description of the reaction to the medication, the suggestion of my specialist to stop it, and my question regarding what to do about stopping the medication considering the withdrawal effects.
Doctor: (YELLING) "If you want to talk to me about Neurontin, do not call me on a Saturday evening. If you want to talk to me about Neurontin, call my office on Monday. Do not call me on a Saturday evening."
Me: "But, I need to get off of this medication because it is making me sick, but I am having withdrawal effects."
Doctor: "How much Neurontin you taking?" (He is not American, speaks broken English and is often very difficult to understand).
Me: 100 mg
Doctor: (YELLING) "That is not possible. Absolutely not possible to have withdrawal at that low of a dose. Absolutely zero percent chance of that happening. Not possible."
Me: "Then what should I do about dosing?"
Doctor: "Do you still have Neurontin left?"
Me: "Yes"
Doctor: "Well, then keep taking it."
Me: "But I need to stop it. It's making me sick. I need to know how to stop it and go off of it."
Doctor: "Just stop it then. OKAY??"
Me: (having given up at this point) "Okay."
Doctor: "Okay then."
Me: "I did not call to get yelled at." (I said this very calmly!)
Doctor: "Have a good evening."
Total phone time: 2 minutes
Did he ever think that I wouldn't call on a Saturday evening unless I felt absolutely desperate? Did he ever think that HE prescribed this medication so it is HIS job to help me if I am reacting to it? How was I supposed to have a good evening when I felt so sick? And, when did it become okay to yell at patients? Did he remember that HE chose to be a doctor in a town where he would be on call? He could have stayed in Texas in a big hospital where he wouldn't have had to take as many weekend calls.
I am one of the first people to say that I have empathy for people on all sides of the health care world--the caregivers, the doctors, the patients, the nurses, etc. Doctors and nurses are overworked and overtired. They are stuck in horrible binds with the insurance companies. Being a patient is hard work too. But, there are lines. There are boundaries that should not be crossed. Yelling at a patient is one of those.
What happened, oh what happened, to the Hippocratic oath?
This call follows an absolutely horrible first visit with this pain specialist. However, I'm caught in a bind--he is the only pain specialist in town who works with neuropathic pain AND my ANS specialist cannot prescribe any medications that need pre-authorization from MA because I have not seen him in the past year. My ANS specialist knows my case inside and out, and in the end, he always seems to know what is best for me--but I'm stuck trying to see a doctor locally to go through the hoops of MA.
On Sunday, my ANS specialist emailed me regarding my phone call and email to him on Saturday. His email popped up just as I was on the computer, so I said, "I'm online, will write right back!" He wrote: "I'm surprised that you are reacting to such a small dose, but I guess I shouldn't be, as that has been a consistent pattern for you before. I would agree that these side effects sound like withdrawal symptoms." It made me laugh in a difficult time. Note: He said my symptoms certainly fit those of withdrawal. We then discussed the next possible options in drug treatment.
Somehow, I feel like he always picks up the slack. He's always the one who has to pick up the pieces that the other doctors don't want to deal with. He does it with such humility and grace (and humor), never seeming bothered. It's as if he's resigned to knowing that most doctors won't deal with difficult cases or cases that don't fit in their 'boxes'. I feel guilty, but I think somehow he has accepted that this is part of treating patients like me--the kind who NEVER have things 'go as expected'. He will now monitor whatever drug I am prescribed. This means, as he says, I may NOT start it until he is back from his summer vacation so that I am not stuck in a situation where I cannot be in contact with him! This is an ongoing joke between us--he will write, "I will be out of the office such and such dates so I do not want you starting any new medications while I am away."
For the past few weeks, I've been feeling like I'm drowning in this MA frustration. It's eating at me.
Today, I spent the entire day of my 'awake' time calling the pain clinic (no call returned), the pharmacist (angel pharmacist out of town), and my MA nurse case working trying to find the answer to what should be a simple question: Are Trileptal or Lyrica covered by MA? If so, what are the pre-authorization requirements? It was me who told the MA nurse that Lyrica is covered only if you 'fail' at Neurontin.
Why isn't this information readily available, especially to the nurses who work for MA?
So, I ended the day with no answers and more frustration. The Ambien ordeal is on hold for now because I must recuperate from this medication and find a new one to try before we travel to NY for my Lyme appointment in late September.
And if you're actually still reading this rant, I might as well finish my story, eh? The first visit with the pain doctor--a pain in the toosh!
At my first visit I spent 3 hours waiting to see him for 20 minutes. I spent quite a bit of time with a nurse and provided her with documentation of my underlying conditions and a bulleted list (as suggested by my ANS doctor) of how moving my neck creates pain and what symptoms follow (i.e. pounding heart, sweating, dizziness, etc.).
Usually, I go into appointments alone but since I had been waiting for hours, the nurse offered to bring my mom back to keep me company. I am glad that she was there to witness the appointment because sometimes I lose sight of how I was treated or take things too personally. Later, after I told my ANS specialist about the appointment he joked that it was just too bad I was so intimidating in person! Ha!
Immediately the doctor--whom I will call Dr. Pain--came into the room talking very loudly and saying (in reference to the information I had brought him on my underlying conditions), "I do not know anything about these illnesses. I do not know about Chronic Fatigue Syndrome or Orthostatic Intolerance. I can only treat your pain. Do you understand? I can't treat your other illnesses. I can only treat your pain. Do you understand?"
After he said this several times my mom, who NEVER asserts herself to a doctor said, "Yes, we do. We're intelligent. We understand." My jaw about hit the floor.
Dr. Pain says, "Okay good. Because people come in and expect us doctors to have the answers to everything."
Now it was my turn to assert myself. I said, "I don't expect you to have the answers to everything. I'm just asking you to treat my pain."
Dr. Pain: "Good."
Me: "But some doctors also think that they DO have all of the answers."
Dr. Pain: "Oh not me. I don't have a big ego. I was born with a small ego."
And he so clearly demonstrated this on Saturday evening when I paged him, didn't he?
During the appointment he did not let me get a word in edgewise, he did not let me explain my pain or look at my bulleted list. He did not examine me. At the end of the appointment he just said, okay, I'll give you Neurontin 100 mg a day and walked out.
I had NO idea why he picked Neurontin, why he labeled my pain as neuropathic, what side effects to expect, how long the drug would take to begin working, etc.
Luckily the following week I had an appointment with my PCP who then examined me and discussed my pain and how it might be neuropathic pain. For example, I have been having pain in my elbows when I bend them across my belly or chest to fall asleep, and then they go numb. Dr. Pain did not let me explain this symptom. My PCP, on the other hand, examined me for ulmer nerve problems, carpel tunnel, etc. and when I showed no signs of those, suspected the pain was originating in my neck. I also have a lot of pulling and throbbing sensations, rather than pain which I can describe as shooting or sharp or dull or achey.
The major issue is finding something to inhibit the ANS responses I have to moving or using my neck. For example, I cannot lie on my side and rest because there is so much 'pull' in my neck that my heart begins to pound, and the vicious cycle of pain and ANS symptoms takes off. Oh how I envy my friends--when I watch them curl up in bed and feel comfortable or when I watch someone type at a computer or watch TV without it causing a barrage of symptoms. And what would it feel like to sit down in a chair without a zillion pillows propping me up in a precise position that does not create too much 'pull' on my neck?? What would it feel like not to rely on ice packs and heat and Ben Gay in addition to my Lidocaine patches? I would very much like a super-sized lidocaine patch as they do work wonders, but just not even close to enough! I wonder, I hope, I dream that I will know what it feels like to be in less pain.
Blessings to you if you've made it through these mixed up ramblings. On my part, I'm promising to be less of a Miss Grumbolina next time I post!
Emily
Photo: I thought a picture of Kermit the Frog was fitting based on Jeannine's comment. Anyways, ever since my gallbladder surgery the term 'you look green' has come up a lot, especially before my gallbladder was removed and I really did look green. I became known as 'the green girl' on DINET and then later 'the girl formerly known as green'. Unfortunately, I still turn green sometimes!
Image taken from: http://muppet.wikia.com/wiki/Kermit_the_Frog.
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