don’t give up! my experience getting into the level 2 pain program…

dont-give-up1Last week was one heck of a week! I had been waiting for that week for months… the day when the decision on whether or not I get into the pain program was determined. I go to Kaiser, but I believe this process is probably similar at any hospital/ medical center. The main point you have to remember… DON’T GIVE UP! Be vigilant about your health, it’s YOUR body, and at the end of the day you are the only one that will make it a priority.

It all started when the nurse practitioner I had been seeing for years… retired. I was suddenly at a loss. She was very caring and seemed to know what was going on and prescribing my meds, taking me off work when I needed, etc. She was a Subject Matter Expert. So I thought. I still have extremely great thoughts about her, but not in any of that time did she even MENTION this Level 2 Pain Program.

May 2009. My first appt with, and I’ll call him… “Dr. No Bedside Manners” was horrible. He barely acknowledged me as having Fibro, was really abrupt while examining me… didn’t acknowledge I was in real pain even though I was clearly crying while he was examining me… told me that I shouldn’t still be taking opiods after all this time, basically made me feel like a drug addict… just all in all… not a good visit. This after seeing a very sympathetic, understanding yet knowledgeable NP before. I seriously thought to myself… “Oh crap, here I am again, back in Kaiser hell…” BUT I do have to acknowledge that he told me about the Level 2 Pain program and enrolled me in the introduction class. That’s pretty big… so kudos to Dr. No Bedside Manners for that. At any rate, when I walked out of there, I looked at my husband and decided that would be the last time I saw that guy.

My Intro class was scheduled for July. Unfortunately I had to travel for work, unexpectedly the same week and had to cancel out of my class. Had I known the consequence of that decision, I would have never canceled. When I received my new date, it was not until October 6th! I called every few weeks and there was just no way I was getting a new date. In fact, I received a call and the class was pushed out a few days!

In between May and October, I was bounced from my PCP to the Dept of Physical Med & Rehab. This is the Dept that does the referrals to the Level 2 Pain Program. I took the time to fill out a complete profile of myself and gave it to a Physiologist who put the information into the computer… only to tell me that she can’t treat me, but will refer me to the program (again) and basically her only role is as the “gatekeeper” to the Level 2 Pain Program. What? She can’t prescribe meds, she can’t help with my handicap placard, she can’t help me determine if I should continue to work or not…. she can’t help me period! Very good use of my time… and after this visit, I looked at my husband and we just walked to the car in silence and once in the car I just burst into tears.

So… back to my PCP… between May and October is a long time to be in excruciating pain. I needed a solution for my pain. I was not sleeping, I could barely walk most days. I was almost 100% confined to my bed. My life sucked. I up’d my anti-depressant, I had hit bottom. My PCP is looking at me, she says “I’m not a pain specialist, I can try to help you, but I’m not sure what I can do…” I’m ready to just give up.

Through all this, the only consistently good things? The support from my family… AWESOME! The support from my boss… WONDERFUL! The support from my friends… BEAUTIFUL! They are all the best, I couldn’t ask for better. I have been truly blessed from this perspective.

If it hadn’t been for all the support, I don’t know what I would have done. Let’s just skip to the good now. It’s now Friday, October 9th (my son’s 17th bday) and I’m at the Intro to the Level 2 Pain Program class.  Before coming, I had to fill out this 7-8 page form which provides a very comprehensive/ detailed overview of my pain problem. During the class, we are taught how pain is processed, active vs. passive chronic pain treatment, cycle of pain, about opiates… and about the chronic pain team. While in class, my information is reviewed by a psychologist.

There is only one absolute criteria that you have to pass… you cannot be on any opiates to join the program. You have to sign an agreement that you will discontinue use. This wasn’t an issue for me… I only take a few times a month. Once you finish the intro class, you get a call from the Nurse Care Manager to set up the pain team evaluation appt. And now we have gone full circle… back to where I started….

October 2009. Last week was my pain team evaluation appt. It was four hours and I met with a Doctor, Psychologist and a Physical Therapist. Each for 45 minutes. Earlier in the week I had a phone appt. with a Clinical Pharmacist to review all the meds I was taking and had taken previously. At the end of the three 45 minute sessions the three + Pharmacist + Nurse Care Manager all got together in a room and agreed on a treatment plan for me. They then brought me in the room and reviewed it with me. They recommended that I:

  • Participate in the 10-week Level 2 Pain Program starting in January
  • Light aerobic exercise 2-3 times a day for 10-15 minutes to work towards 30 minutes a day
  • Individual PT appts
  • Biofeedback appts
  • Individual Psych appts for cognitive strategies
  • Make some changes on my meds

There were two options for the Pain Program. There was a pilot program starting November 2 for Fibro and Migraine patients but the team felt it would be too heavy-duty on the exercise as well as the people they were including were, for lack of better words, in better shape than me,  I was not ready for it.

I am really excited to get into this. I hear great things about this. Success rate is very high providing you always follow what you learn and make it a change in your life and don’t fall back to your old habits.

This was a long post, but I wanted to make sure you understood the process I went through. This way, when you start to go through it, maybe you will be better equipped and your expectation will be more realistically set. It’s not a quick one… so please be patient.

Thanks for reading! Stay cool!

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