My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, November 20, 2012

She was so nice I cried

Yesterday I called my Medicare Rx (part of Medicare Part D) provider because I got a strange bill in the mail.  I was sure that my premiums were all paid by the state this year, so I was really confused by the bill.  Was this from 2012?  Is it for 2013?  I listened to some bad muzak and was transferred to a very nice woman.  She explained that the state paid my premiums in 2011, but not in 2012, so I had not paid them--all year.  She made a seven month payment arrangement with me, where I will pay my monthly premium plus that payment.  I thanked her for being so nice and actually cried on the phone because I was so thankful.  I've never talked to someone about being behind on a bill and had them be nice about it.  She told me that if she expects others to be nice to her, she has to be nice to them.  Then she wished me a good day and a Happy Thanksgiving.  Wow.

I think anyone who has had to talk to many creditors on the phone, most of them shouting at you, many of them telling you what a bad person you are, would understand.

I've been in a flare because my rheumy (who is only a PA or NP) that treats my EDS and fibromyalgia, doesn't know how to read paper that comes out of a fax machine.  Over the past week my pharmacy has faxed the office three times and I've called and left a message once.  The medicine I need is crucial to keep my pain levels down and keep muscle spasms down; I seriously feel like screaming sometimes.  She's at a University Clinic!  Shouldn't I be receiving better care at a University Clinic?

I called her office last week to make an appointment for after the first of the year, and got one for January 3rd.  I asked them to send me a map.  On the map they wrote "Appointment: December 3rd," with a time.  I called them yesterday and asked if they changed my appointment to December, instead of the January 3rd appointment they gave me before.  They looked it up in their computer and said in their computer it said my appointment was for December 3rd.  Needless to say, I was frustrated.  I told them that when I made the appointment I stressed that I wanted it after the first of the year, and that they made it for January 3rd, which is what I wrote down.  Then, in a very brain dead sort of voice, the receptionist repeated, "December 3rd."  I asked her if she could please cancel the wrong appointment in the computer and make a new one after the first of the year.  So, now my appointment is right after the new year, and late enough in the day that we won't have to hurry to get there, since we live far away.  I don't have a Primary Care Physician, just specialists.  My EDS is treated (just the joints and soft tissue) by my rheumy.  I don't have a doctor for my overall EDS or POTS.  All my doctors, except my Neurologist, are at University Hospital, and so far these are my results:

Rheumatology Clinic - Bad
Cardiology - Clueless and Good Bedside Manner
Genetics - Horrible Bedside Manner and Semi-clueless
Endocrinology - Very Good

The only ones I see every year and a half to two years are my Rheumy and Endo.  I don't see Cardiology or Genetics anymore.  I'm supposed to see my Rhemy and Endo more than I do, but I can't make it up there more often than that.  It's about an hour away, and when you are in poverty, an hour away is very expensive.

Anyway, I have a payment plan set up for my Medicare Rx, I'm still waiting on my medicine, and I got a new appointment with my rheumy for after the first of the year.  Have a Happy Thanksgiving Everyone!


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