Today I sure wish I could find my peaceful place of acceptance about which I wrote last night. This is one of those days when peace of any sort eludes me. But I do know that I will find it again. That's one thing about this disease I can always count on; no matter how bad I feel, it will eventually change to better or worse and no matter how good I feel, that will also eventually change to better or worse, but I digress. This whole thing, dealing with this loss of self, life, love, health, credibility and legitimacy as a human being and all that, all boils down to grief. There are 4 general stages in grief in which a person can be at any given time for any length of time which are, in no particular order: anger, denial, sadness, acceptance. All of them are normal responses to any deep loss. I'm rolling around today somewhere between sadness and anger. I'm so tired of hurting and I'm TERRIFIED because I'm forced to return to my PCP and tell her my pain is not under control, which will without a doubt be ill-received and she's going to (excuse me but) piss all over me. I know it's coming. I also know there's nothing I can do about it. I still don't understand why it is that you can tell your doctor that the blood pressure meds, cholesterol meds, antidepressants or antibiotics aren't working, but if you say the pain meds aren't working, the doctor goes into some other mode. How exactly does a doctor differentiate between "drug seeking" and "relief seeking"? And how exactly does one ask for pain relief without asking for it? Isn't adequate pain relief among the "patient's bill of rights" they hand you on your first visit? Frankly I hate pain meds. I do not enjoy how they make me feel, I don't get how people can become addicted to them, and would much rather just not need them at all, thank you. This doctor says that CFS does not cause pain (WHAT?), that FM doesn't hurt that bad (like there's some universal pain limit in FM), and yet refuses to evaluate me for other possible causes, which makes absolutely no sense and clearly indicates that she doesn't believe me. I need a new doctor, but that process is more emotionally challenging than the pain. So gathering what strength I could today, I made some calls looking for another doctor since there's no law that says I can't just keep looking till I find a doctor who gives a sh*t or die trying. I called one doc who was recommended by a good friend with chronic pain, but he is not accepting new patients. I called another who was listed on a CFS "good doctor" list, only to find that he does not take Medicare, which really makes me mad since many of the sickest of us are on Medicare (if we're lucky enough to get it). So how much understanding could he really have if he supposedly understands CFS but doesn't accept Medicare? It's an oxymoron to me. Then I called another doctor who was recommended by a friend whose mother has CFS and claims she is well treated. I was told that in order to JUST make an appt as a new patient, I had to come to the office first and pick up a new patient packet. The lady said, "Otherwise I don't have anything to put into the computer", as if I were not right there on the phone with her. I mean, how much information does she need to give me an appointment? I asked her if she could please mail said packet to me as I am totally disabled and getting there is a major challenge. She said that I should just send someone else by to pick it up (I kid you not, and this is just a regular, run of the mill family practice). I said, "well that's the thing, my husband works 3rd shift and doesn't wake up until after your office is closed, so could you just please mail it to me?" to which she responded, "Ummm, most people just come by and pick it up". I don't know if I even want to walk into the door of a doctor's office that treats people like this as general policy. So I'm back at square one AGAIN, faced with returning to my idiot PCP and being chastised for failing to suffer from my disease within the proper parameters. She is willing to refer me to a pain clinic, but get this, not one pain clinic in this city will take a patient who has a diagnosis of fibromyalgia, regardless of what other condition they may have, even if it's not for treatment of fibromyalgia. Insane, right? I have written to several infectious disease docs requesting consultation, since my PCP will not refer me, and have not received a single reply. My options are getting more and more narrow and I'm feeling really compressed, so yes, I'm not finding my place of acceptance today. Maybe it will be there tomorrow. I think I'll make a list of the things for which I'm grateful, since doing that seems to help on crazy days like this. So do you think insanity like this with the medical community will get better or worse with Obama care? I truly don't know, and I'm just asking for opinions. I have no political agenda. I'm too tired for things like political agendas, and I'm not even sure I spelled it correctly. Thoughts?
