Part 1 The PCP (May 2010)
The insurance company, in their infinite wisdom, assigned me a doctor, randomly. Here, here’s this doctor, he’s in your neighborhood, and he participates in our network. He is part of a medical group that I try to avoid. Cool.
My first visit with him was for flu symptoms. We chatted, he wrote a prescription.
My next visit, was to address the joint pain I began experiencing daily—like every joint, every day. I had done considerable research on my own, eliminated the unlikely, and had narrowed it to Rheumatoid Arthritis (RA) or Lupus (which because of my age, wasn’t very likely). I wasn’t happy about either.
I can’t tell you when I had the first episode – because I chalked it up to the flu, or a hard day, or not drinking enough water and possibly being dehydrated. So, maybe the first three got by me.
But in May, 2010, I had had enough. Episodes were increasing in regularity, and intensity. I already had a bad back, I needed to attack this head on. So despite my lack of faith in the medical community, I called and made an appointment with my PCP.
We chatted. He nodded empathetically. He never looked at or touched my joints. He prescribed Toradol, an anti-inflammatory, at my request. He referred me to a Rheumatologist, in the same medical group.
Appointment in three months. Cuz, you know that makes sense. Go to the doctor for pain that immobilizes you, wait three months to have anything even looked at. I was angry, but took the appointment. Meanwhile, he’d do blood work, to see what we would see.
I smiled, and acquiesced to the blood work, knowing, from my own research that in more than 25% of RA patients, the blood tests were inconclusive. But what did I know—I’m an English teacher.
Part 2 Specialist, Rheumatologist 1. (August 2010) [copied from my facebook with edits]
I went to see the “Specialist” yesterday. Finally. I was supposed to get some answers! … pfft!
I arrived early, as requested. I filled out the requisite paperwork. And then I waited, because, you know, he’s a “Specialist,” so clearly the wait needed to be at least as long as it would be with a PCP. The waiting room was vacant, save my book and me.
I was eventually called back by a young nurse who repeated several times it was her first day. She weighed me – the scale was digital and read in pounds. She dutifully wrote it down. So far so good, well except the weighing me part, of course.
She measured me. How tall are you? she queried.
I was a little concerned by this question, because, you know, she was measuring my height. I’ve been 5’7” since I hurt my back in ’89. I used to be 5’8”. I replied.
Oh, you’re 5’5”.
Hmm. As a math challenged English major, I assumed she was simply having trouble converting from inches to feet. That woulda been my issue there. She proceeded to check my blood pressure – three times – before she calmly smiled and said – 160/90.
What? Um? Do you have my records from my PCP? They’re in the same medical group and everything is online, so that made sense, she should have access, right?
“Of course, we are all in the same system; anything anyone enters from any location is accessible to everyone in the system. It’s all amazingly efficient.”
Well, yeah, maybe if someone bothered to look at the flipping chart! My normal blood pressure is 120/65. Not to worry she tells me – you just drove through the city (it was a somewhat sleepy drive on a completely deserted highway to an upscale suburb in Richmond’s West End) and are here to be diagnosed with a possible terminal disease, I’m sure that has caused you blood pressure to rise a little.
Terminal? Who said anything about terminal? Now my blood pressure should be rising. She told me the doctor should be with me shortly and wandered off in her delusional contentment satisfied with her woefully lacking nursing skills.
The Specialist arrived and asked a battery of questions that I had answered on the initial requisite paperwork in his lobby. He nodded a lot. He asked about the hysterectomy I had in ’96. His follow up question asked if I was still menstruating regularly!
OK. Now, my blood pressure must be going through the roof. I found a way to work in a question about where he attended medical school — someplace in Philly that I’d never heard of. I began to get anxious. A ditzy nurse is one thing – an idiot for a doctor is a completely different story.
It is however, apparently, my story.
The Specialist informed me that all the blood work I had done 3 months ago was useless. He hadn’t ordered it and he wanted it done a different way. Same blood work, done differently. But he wanted me to wait until I was in the middle of a flare up to go and have the work done. He was starting to sound high maintenance in addition to idiotic. I just nodded.
Finally, we came to the issues of diagnosis and medications. Well, it could be Lupus (my age, as I said, makes this unlikely), or it could be RA, or – or – it could be a completely random Celiac Disease, because you know, I have one of the thirty or so symptoms of that. And until he knew exactly what we were dealing with, he was reluctant to prescribe anything. He, instead, wanted me to take 2 Aleve twice a day. I informed him that if taking Aleve had worked, I wouldn’t have come to the doctor. But, my protestations and rationale fell on deaf ears.
I went to sit in the waiting room to await the orders for the blood tests when an obvious crackhead walked in with her obvious crackhead little sister. And by little I mean she was about 5’5” (rather than 5’7″ or 8 ) and rotund. Her socks didn’t match, well they didn’t match each other, but each one matched one of her sister’s.
I pretended to read.
Crackhead-the-patient approached the reception window and asked for her medication. The nurse dutifully handed over the anti-rheumatoid medication that I had come for. The patient demanded her pain prescription. The nurse squirmed, but relented. She scurried back to ask Dr. Know-nothing for pain medication for the crackhead at the window. He apparently obliged. The nurse triumphantly handed over the small piece of paper.
Crackhead-the-patient moved quickly out of the office into the foyer, dialing her cell phone as she went. This didn’t appear to be suspicious behavior to anyone but me. Maybe it’s not all that odd to rush to make phone calls when you get hooked up with narcotics. Sure.
As the door closed behind her, crackhead-the-sister approached the receptionist window and said, “You know that shit you’re givin’ her don’t work. I took a bunch of them and they didn’t do nothin’ for me.”
And I’m the one who needs to take Aleve? Really? I couldn’t make this stuff up! It is my intention, at the first opportunity, to call my PCP and insist upon another referral. But I am anxious that that will be another three month wait. And whatever it is, is getting worse—more regular. And I need answers…
Postscript: I arrived home from work tonight to a note from my insurance company, they were pleased to inform me that they had approved 999 visits to Dr. Know-nothing for the next 11 months…how awesome is that?
Part 3 Specialist, Rheumatologist 2 (September, 2010) [copied from my facebook with edits]
I talked to friends with RA and they recommended the doctor they used. Three friends, same doctor. I called my PCP and got the referral. The appointment would be in one month and not three – and if the office had a cancellation, they would squeeze me in earlier. Different medical group, but also in-network. So I waited the month, and went…
I waited for over an hour in the waiting room…this did not bode well. I had back to back appointments waiting for me, at work, at 5pm; I arrived at the Dr’s office at 2. But, he came so highly recommended that I held my normally acerbic tongue. It was challenging. It didn’t help that my PCP had neglected to send the referral paperwork; luckily I had my own copies of the blood work results.
They got all of my vitals right, so that was helpful.
Once in, the wait was short. He asked about medical history, answered questions, and took time to listen: points regained. He, then, did something that neither of my PCP nor the 1st rheumatologist did – he touched every one of my joints.
Then he asked more questions.
Not shockingly, all of my joints are inflamed. He asked about the dryness in my eyes (two more points, this is a lesser known symptom of RA and a couple of other autoimmune diseases that cause joint pain). He took a lot of notes. Ordered blood work that he seemed annoyed had not been done with the first batch.
No diagnosis, but I do feel like someone is listening now. He prescribed Prednisone for 30 days, decreasing the dose weekly. He doesn’t want me to take any of the anti-inflammatories previously given because that will mask the effectiveness of the steroid. So, if the steroid doesn’t work, I’m probably going to be grumpy. But his logic is sound, let’s get rid of the inflammation — no matter what is causing it — so we can improve your quality of life, and then we’ll figure it all out.
I go back in three weeks for blood work results and to update him on how the steroid is working… I will at some point move to the homeopathic treatment, hopefully, but, I want something concrete to move forward with. Something that will decrease the symptoms.
I made it back to work in time for the 2 meetings.
I’ve seen the doctor three times now and have a diagnosis of RA – and I really knew that going in. But he is helping me live a better, pan free life day-to-day.
At a friend’s suggestion, I had started taking vitamin D. People with RA tend to have lower levels of it, and taking it daily reduces pain. The first brand gave me a rash, so did a second.
I arrived home from work one afternoon a couple of weeks after my last appointment with the RA doctor, to find a prescription for vitamin D in the mailbox. The awesome new doctor had it checked, and my D level was, well, nonexistent. So, I took the ‘script. I had to take Benadryl with it, because it made me itch. No rash, just itching. I tried a third brand of OTC when the ‘script ended—but it too caused me to itch and develop a rash. I am, apparently allergic to vitamin D. Go figure! Like my iron level, it’s possible that my D level has always been low, but no one has ever checked it before now – so I had no idea I was allergic. Welcome to my world.
It’s not like I can get a lot of it from the sun; I’m a fair-skinned Irish woman. The sun has never been my friend. I appreciate it—through the window. I burn. Peel. Then burn again. It’s very unpleasant.
Part 4 The Irish Woman Doctor. (April 2011)
Things, other than the rash, have been going well health-wise. The pain in my joints has decreased, and is managed with, of all things, Malaria medication. Really. Malaria medicine is used to treat RA. And it works.
Things were going well, until two weeks ago when I turned my head. I have 5 herniated/prolapsed disks in my neck. And I must have turned wrong. I took pain meds, anti inflammatories, did heat, ice, heat. I was miserable for a week. I knew I needed to call the doctor… but the RA doctor wasn’t going to handle this! He couldn’t do the referral to the chiropractor.
After ten days in a neck brace, I relented and called the insurance company and changed my PCP. I have done some research about the doctors locally that 1. Are not affiliated with the group my current PCP was, and 2. Were affiliated with the group my amazing RA doctor was.
I was in luck.
At an office, close to my home (on the same road even!), I found a woman doctor – from Ireland. That could work. She was on vacation last week, so I had to wait until yesterday to see her. But she is awesome.
I was immediately at ease with her. She listened to all my weird idiosyncratic health stuff without bias. Nodding in the appropriate places. Responding to the vitamin D issue with, “Well you’re Irish, so we’re going to have to find a way around being in the sun to fix that, aren’t we?”
I spent about 45 minutes with her and my faith in the medical profession has been reinforced again. She did the referral for the chiropractor (he’s another whole story, I’ve known him for years), without question.
I see both of the good doctors again in June. So, the moral of the story is, don’t accept less-than-professional medical services. You’d shop for a mechanic, shop for the right doctors!
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