chronic pain/fibromyalgia · Jews/Jewish/Judaism/Orthodox Judaism

The Pain in the Butt You’re Feeling is Me

I am getting my wisdom teeth pulled.

In fact, all that lovely money from speaking engagements I’m doing in March is going to be forked over to the dentist in April. I have no dental coverage and even at the “student” clinic, I go to, there is no sliding scale and what they call “affordable” would make you cry. I have kept putting off dental treatment because I had to put my money elsewhere…towards shockingly hig prescription co-pays, towards everything that isn’t covered by my ever-pricey health insurance and oh, to lend my sisters money for healthcare costs because they don’t have ANY healthcare at all.
The first time I got a wisdom tooth pulled it cost me $1,000.
The dentist had planned to remove two wisdom teeth, one side of the mouth, but the first tooth was so impacted that it took him hours to get it out. And this was no student, but a nice (Jewish) Central Park West dentist who helped me get my fibromyalgia diagnosis after I came to him in 2005 with a phantom toothache I thought was a “cavity.” No cavity, just fibromyalgia. I could not have made it through the next few months and the awful round of doctors I had to see to get my diagnosis (doctors who laughed, accused me of being mentally ill and who finally told me at least it was fibromyalgia and “not a brain tumor”) if it had not been for this dentist’s support.
Many times, I have visited me and he has not charged me. He knows my husband is in yeshiva and the dentist himself studied at one of the most prestigious yeshivas in Jerusalem even though he is no longer religious. When I told him I was converting shortly after beginning to see him in 2005, he told me that I was “crazy” but then gave me a “Jewish discount.”
I am going to get the last three wisdom teeth pulled in April. All at the same time. This, despite the fact that my CPW Jewish dentist thought this was a bad idea because of my TMJ and most especially, fibromyalgia. Any kind of pain in one section of my body travels and causes havoc in other places. But I cannot afford to get it done this way, much less one costly tooth at a time.
The dentist, a student and oral surgeon, said “I should be okay” and putting me under should help. When I asked if she would be giving me extra painkillers afterwards because I am now “tolerant” to so many, she said no. I worried that she was concerned I was an addict trying to get extra pills but I explained about the fibromyalgia and the previous dentist’s fears.
Still, she ignored me even when I added that I was “very, very concerned” about this undergoing this procedure. She said if problems arise, she will help me coordinate a refill. Somehow, I don’t have faith. Especially considering that to schedule an appointment at this clinic, I had to call, wait on hold 10-15 minutes at a time, then hang up for hours before someone would deal with me. And every appointment lasts at least three to four hours. I went home feeling worried, petulant, sulky and hating doctors. Even though I am one of those crazy folk that loves dentists (and gynecologists!) because they are the only ones who have ever taken me seriously (before and after fibromyalgia) and treated me like a sane person!
Reading the blog “Dancing With Pain” and connecting with fellow chronic pain sufferer Loolwa Khazzoom, I have decided to do the following. I am going to do what I should have done before I ever even made the appointment for my wisdom teeth. I am going to call my former dentist and get his take on the procedure. I am going to get his cellphone number so that the other dentist can speak to him. I am going to get my rheumatologist on the line and get his take and HIS cellphone number. I am going to show up to the appointment with my husband, who people have no problem taking seriously, to help me advocate for myself, get that prescription for extra painkillers first before I allow them to operate on me.
I have tried the other route.
I have really suffered when doctors ignored me.
When I said I was asthmatic (albeit, allergic asthma) and I probably shouldn’t take a medication with even possible side effects for asthmatics, the doctor ignored me and I had my first major asthma attack from a medication that listed it as a possible side effect. In his defense, he was as desperate as I was to find the drug that would help make my fibromyalgia manageable.
When I said I was worried about a medication that “gave me a really bad headache the last time,” another doctor ignored me. The next time it put me in the emergency room where it was deduced I was allergic to sulfa. It took me two years to pay back the $1500. At the time, my income was $600 a month. $500 of which was for the three-block ambulance ride that had arrived after my recently kidnapped 14-year-old sister had called 911 because I lost consciousness.
I had also told them that many antibiotics failed me often and I worried it was because my mother never followed the directions and even used old antibiotics to “treat” my allergies and other ailments. Despite this, the doctor gave me cheap antibiotics, even when I explained I would pay for the more expensive kind with my credit card if I had to. I ended up in the emergency room having the most expensive antibiotic dripped directly into my body via IV.
So, Loolwa, I’m listening! And now, when doctors ignore all the hard earned information I give them about my health as someone who has lived it, the pain in the butt THEY will experience is ME. I will try to get past how demoralized and traumatized I am from dealing with all the doctors who have shamed me.
NOTE: As I reiterate numerous times whether I post about my health, please subvert any desire to respond to this post with a suggestion of “things I should try” for my health. I will ignore and delete any such comments whether they are posted here or emailed to me directly. If you are confused as to why, click on the “chronic pain/fibromyalgia” tag and read ALL of the previous posts.

8 thoughts on “The Pain in the Butt You’re Feeling is Me

  1. That is terrible- it is such a shame that many of my colleagues are ignorant when it comes to fibromyalgia and other conditions that used to be written off as Pain Disorder or other forms of somatoform disorders or hypochondriasis but that we now know are neurological and rheumatological in nature.

    When I used to moonlight at a local ER, I was shocked that so many nurses had no consideration for patients who were hyperalgesic and who needed to give blood. Hyperalgesia is a form of trypanophobia, and this is a serious and legitimate diagnosis, according to the DSM-IV. Many people just cannot take needles due to the pain that is causes them. I would have to unfortunately scold whoever the attending nurse was and allow the patient time to relax and then use emla cream for the patient.

    It is not just fibromyalgia that so many doctors are ignorant about. Endometriosis, for instance, is another condition that many non-ob/gyn's simply do not know enough about. This lack of knowledge sadly hurts many patients. That is why I am committed to patient-centered care, as well as narrative medicine, which does stress consideration for the full context of what the patient has to say.


  2. I wouldn't even dream of telling you how to look after yourself! I am just so glad that we still have a National Health Service in this country which is paid for through every earner's salaries, enabling you to go to the doctor/hospital and only have to worry about paying for the prescription of £7.20 per medication, not the ambulance ride or the test or the appointment itself.

    It may have a lot of faults, but at least we have it.

    I wish you all the very best with your dental woes!



  3. Aliza,
    I think you are doing the best thing that you can do: get communication going between doctors and be your own advocate. These are basic rights you have as a patient. You decide what to do after you've gotten the best opinions. I hope you get some good recommendations. ¡Animo, muchacha!


  4. It is a hard lesson learned, but never too late! Welcome to the club of self-advocates, aka – pain in the butts for doctors! In my experience, they will love or hate you for it, but either way, you'll come out better than before!


  5. Good for you.

    Bad Cohen gets around these types of doctors by dropping technical terms he's picked up by basically memorizing Anatomy Trains and the Fibro medical traiing manuals.


  6. The only thing I would say about the wisdom teeth removal is if you aren't knocked out, make sure to be willing to stop them for more anesthesia. I discovered the hard way that I metabolized lidocaine way too rapidly while having three wisdom teeth removed, and I was afraid to tell the dentist I was feeling what he was doing too frequently.

    Other than that I think you're beautifully prepared and going in with backup in case the dentist keeps pooh-poohing you is so smart.


  7. I'm as disabled as I am now (muscles all atrophied, on a ventilator 24/7) because no one would listen to me as a child.

    I hate dealing with the medical (non)system.

    And boy do I understand chronic pain. It's not the acute, it's the chronic that crushes my spirit, I'm starting to break down, there are so few breaks from the pain that I don't have a chance to gather myself, replenish my reserves. And this is WITH pain medicine almost every 4 hours.

    I moved to the most populous city in America, yet still don't know who to turn to. I feel like I 'm slowly losing the battle, physically, psychologically, spiritually…..


  8. Nick, I know it's crazy to say this considering how different our situations are, but I understand in my own way. I really do. “The system” is crazy and sometimes, I wonder if it's just meant to drive people like us crazy so then we won't notice.


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