Chronic Pain members - Welcome, please introduce yourself

@peach414144 I am right there with you, sister!

And don't forget all that you can get from the free sources. The NIH.gov, the OpenLibrary.org, CancerNet.org, Amyloidosis.org, the Mayo Grand Round videos, etc. Good stuff, there. A lot of it is very brief, but can be very helpful.

Thanks for the note, blindeyepug. Fortunately, one of the things I deal with is that the fibrils have invaded my sensori-nerve system and taken away a lot of my pain. But that is also the curse, because those nerves transmit the signals from my brain to my heart, lungs, etc. When the signal to my heart quits, so do I.

Thanks for the resources @oldkarl. I had not seen the Mayo Grand Round videos...definitely adding it to my list of links.

John

@gailb and @hazelblumberg, Scott is correct. Sharing medical marijuana is illegal. The law considers it “redistribution” if you share your legally attained medical cannabis product. You can read more in this blog post:
- The Dangers of Sharing Medical Marijuana https://www.marijuanadoctors.com/blog/medical-marijuana/dangers-of-sharing-medical-marijuana

Here is further reading about medical marijuana from Mayo Clinic http://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855

Well, rats! I uploaded it, but I think there's a limit to how big a file can be. Perhaps my letter was too long. Maybe I can just copy it and print it here.

July 31, 2017

Dear Dr. :

I have been a patient of yours for nearly 25 years. You know me well by now. I have a few things to say to you:

1. When I started experiencing severe TMD pain every day, I called your office and asked to see you. A, your appointment scheduler, told me that you were out of town for one week. I explained how much pain I was in and asked to see either Dr. X or Dr. Y; I have seen Dr. Y in the past when you were out of town. A told me that
a. she could not guarantee that either of the other dentists would help me and
b. if I had already been in pain for one week, then waiting another week to see you shouldn’t matter.
She would not schedule an appointment for me with either Dr. X or Dr. Y.

2. The TMD pain continued. During that weekend, I could stand it no longer and called your office. Dr. Y was on call. He listened to me and called in prescriptions for Tylenol plus codeine and for Flexeril. I was very grateful to him.

3. When you were back in town, I called to make an appointment to see you as soon as possible. A scheduled an appointment for quite a few days away. I told her once again that I was in excruciating pain from TMD, and she reluctantly scheduled an earlier appointment.

4. You began giving me anesthesia injections in trigger points once per week. I went through a series of injections, some farther apart than one week when I wasn’t in as much pain. You also prescribed exercises for me to do: while in the shower, I was to get my face wet and warm and then repeatedly open my mouth as far as I could; I was also to massage the trigger points. I faithfully carried out these instructions and continue to do so every day. The last time I came in for an injection, you told me that you thought I should see an oral surgeon, Dr. Z, and also suggested that I see a pain-management specialist.

5. A was to “work on” getting me an appointment with Dr. Z very soon. When I heard nothing from her, I called back. The receptionist told me that A was “working on it.” It took quite a while for A to do so. In the meantime, I called Dr. Z’s office and requested an appointment. At first they only had an appointment far in the future. But they called me back, told me that they had had a cancellation, and I got to see him quickly. It was only my calling about cancellations that got me an appointment so soon. Dr. Z’s receptionist never mentioned that A had ever called, and I assume that Robin did not.

6. Dr. Z spent a lot of time with me. He had me move my jaw in all directions, poked and prodded and felt trigger points, and did a 360-degree x-ray of my mouth. He told me that I had no joint damage and was therefore not a candidate for surgery. He wrote me a prescription for Flexeril. (I still had some of Dr. Y’s left, so I didn’t have to fill the prescription immediately. I had used the Tylenol plus codeine only when the pain became unbearable. When I finished them, I did not call back to ask for a refill.)

7. The TMD pain did not go away. A friend who has severe back pain suggested that I contact B, NP, whom she sees for pain management. (Ms. B is affiliated with Dr. C.) I called Dr. C’s office to set up an appointment. The receptionist told me that I would need a referral from either my dentist or my primary care.

8. Because you had been seeing me regularly for TMD, I called your office to request a referral toB. I told your receptionist that I had been in severe pain for over a week, and that it kept waking me up at night. I then had to get up, take more ibuprofen (I was already taking ibuprofen at bedtime), as well as Flexeril. These were not helping. Your receptionist called me back and said that you would not write me a referral. Rather, I would have to call my primary care for one, even though I had not been seeing her for treatment of TMD. I then called my primary care, D, DNP. She is on vacation until August 1.

9. I called your office again and explained the situation to Jennifer. I asked if you could perhaps call in a prescription for painkillers for me just until Ms. D was back in town and gave her the name and phone number of my pharmacy. I also told her which painkillers I could take without becoming extremely nauseated—Tylenol plus codeine or Vicodin—because after various surgeries, I have been prescribed other painkillers that made me ill. Jennifer said she would talk to you. Neither you nor your receptionist called me back.

10. I called your office again, in pain, and asked if you could call in a painkiller for me. A told me that it had been called in. I said that no one from your office or from CVS had called me. “The receptionist called it in,” said A. It took two days for anyone to take my pain level seriously, and then no one could be bothered to call me.

11. I will never go back to V, the physical therapist to whom you referred me. He didn’t listen to me and only talked at me. After one session with him, I was in agony for 2 ½ days. I cancelled the four sessions he wanted me to have with him.

After 25 years, you know that I am not a painkiller/opioid drug addict. You know every medication that I take. You know that I do not abuse drugs. That you would (a) not write a referral to a pain-management specialist after you had suggested that I see one or (b) wait two days to call in a prescription for painkillers is puzzling. Evidently you do not value me as a patient, or you cannot be bothered with me because my situation is somewhat out of the ordinary.

You might like to talk with A about her attitude. She provides the first impression of your dental practice. How many other people are turned off by her behavior and decide not to come to your practice—or not to continue to come?

It is difficult for me to fathom your unwillingness to refer me to a pain-management specialist, given that you suggested I see one.

I will not be coming back to you for dental care again. I will not be recommending you as a dentist.

Hazel Blumberg-McKee

dear hazel b. you are right again. many people realize this and know that the jobs in the government are for show. getting a pay check. fileing all that paperwork and on and on. seems like this is a dream world or rather a nightmare. and are taxed for this. still love my america anyway.

please, excuse me for saying this but the doctors know out tactics. they do not care and they ALL KNOW EACH OTHER and discuss us. my goodness, the more we jump around from doctor to doctor the more we become OUTSTANDING to their private groups. you don;t know how sorry i am to say this but truth is truth.

@jimhd Thanks Jim. We all have troubles and we deal the best we can. I find great support with my family and here with all of you on Connect.
Jen

Roxie is my third Cavalier. And my last because I don't want my dog to outlive me. Puppies take a lot of energy.