Sunday, March 24, 2013

Referral Request Rodeo

I ramble a lot. My asides are in italics. They're long ass asides.

I see a nurse practitioner at a rheumatologist's office. I go to that office because my (former) primary care physician referred me there. It was a grand total of six months from start of hand-wrist-elbow-knee-ankle-foot pain to first rheumatology visit, and I was happy to see someone because pain in ten types of joints really sucks.

We've had four appointments together, and I am seeking a second opinion. I have difficulty communicating with her: processing what she says to me takes twice as long as what it should, and she appears to think I'm being flippant about the risks of DMARDs. I think. She's a little difficult to follow. I do know I don't agree with some of her thoughts on treatment, like her desire to have me avoid DMARDs and chew on NSAIDs with misoprostol (lithium interaction? disease progression?), which is a great reason to get a second opinion.

The last time I saw my (current) primary care physician, he said he would refer me to a different office if I was having difficulty with my current rheumatology office. I saw him because current rheumatology office told me to go to the primary care office for the back issue I had prior to getting the rheumatology referral, because I was not referred to the rheumatology office for my back issue. I had called the rheumatology office to tell them the steroid I was given helped my back, and I wanted to keep that awesomeness going, which is how this mess started.

Primary care doctor said he wasn't sure if the back issue was autoimmune-related or not, so I really need to see a rheumatologist about it. My back pain started prior to the other joint issues, and there is a chance my immune system decided to snack on my sacroiliac region before stopping by the hands en route to my elbows, knees, and feet. Primary care doctor, who is a first year resident, straight up admitted he didn't know a lot about autoimmune disorders. I like a man who can admit when he has no clue. His cuteness is a bonus.

I received a letter in the mail from my primary care physician's office. I was referred to my current rheumatology office with the time and date of the follow-up appointment that I set a month ago at my last visit printed neatly on the waste of postage that was the letter.

My husband said he hasn't seen me that pissed off in a long time. Even my typical speech doesn't include that many f-bombs. My disdain for this rheumatology office is higher than that of green eggs and ham. And I'm a vegetarian and rarely eat anything with food coloring.

The nurse at the primary care physician's office was very nice and helpful. She said the doctor referred me to a specific rheumatologist rather a practice, and his address was that of the current rheumatology office. I explained that the doctor no longer works within that health system and now is in an independent office (no small feat in my town), and his address is [insert address]. She promised to get it through and told me which number to push to reach her or the other triage nurse who would know what was going on.

While most of what I've learned in counseling could have been gleaned from a trip to the public library rather than several class hours and thousands in debt, I did learn the art of getting my way, and I would not have been able to pick that up on my own. I play into people's socioeconomic, gender, and racial biases. My primary care and psychiatrist offices were chosen because they're used to treating people with multiple issues who receive Medicaid, but still get enough funding to function efficiently and keep providers from getting too burned out. These providers seem to find me easy to relate to - dominant race, educated, private insurance, middle-class. My psychiatrist and I have had a few conversations on NPR programs, and he seems to be full of bizarre factoids about the neurological system. The outfits I select for appointments are stylish, casual, but obviously for comfort - no buttons, nothing too tight, no jewelry outside of my wedding set. If I'm feeling bad, but not so bad I'm thinking about suicide, I might bring my preschool age daughter. She has ringlets and Elizabeth Taylor eyelashes. She's going to make me look like a cow. Which is fine, I'm happy she's pretty.

Okay, so taking my kid on appointments is usually the result of needing to see someone right now and not being able to find a babysitter. I don't spend too much time talking about my issues with her - right now I think being honest but not too detailed is best for her age. Still, cute kids are a nice touch.

I think I'll do a post on How To Win Friends and Manipulate People sometime.

Anyway, it took three phone calls to get the office to send the request to the right place. The nurse suggested I call the office where I'm being referred to make sure they received what they needed. I was left with the impression she went the extra mile on this one and got as far as she could, which was I appreciate. I called the hopefully new rheumatology office and was told they need my records from the old rheumatology office, and they do not request records for new patients. I called primary care office back and was told the current rheumatology office hadn't sent them any of my records (Uh, what happened to coordination of care?) and though they had access to my lab work due to having privileges at the hospital where I have my labs done, they can't release those records as they are not theirs.


At this point I get in my car and drive to the hospital so I could speak with someone from the records department. I was told I would be charged over a dollar per page if I requested the records to go to the new rheumatology office, but I would not be charged anything if the primary care office requested the records and then did whatever they wanted with them. It was recommended that I sign releases at the primary care office.

The journey continued to the other end of town, where I had to explain to the receptionist (who was pretty nice) in a few different ways that I needed their office to request records from one of the big two health systems and forward them on to the rheumatology office I want to see. I had to fill out the releases in a manner that did not make it look like I requested the records be released - I did that accidentally because I wanted some lab work sent to my psychiatrist, and I was stuck paying twelve bucks.

That's where I'm at now. Will call on Monday to see how things are coming along.

- Elisabeth

Friday, March 22, 2013

When Life Gives You Lemons, Do Lemondrop Shots Before Getting a Prescription

Welcome to the first blog post! Let's get acquainted:

I'm in my late twenties, and I've had to reevaluate my long-term goals and modify the day-to-day life stuff on three occasions. The first was when I was diagnosed with Bipolar Disorder at 23. The second was when I had my daughter at 25. And the most recent was at 28 when I was told I had an autoimmune disorder and would experience a life of waxing and waning pain. The kid was on purpose, the rest of the garbage no way in Hell. 

Seriously, I'm in my twenties. Can I get a break, here?

Bipolar Disorder is unpleasant for me, but I have tried to use the experience to help others find meaning in life with psychiatric issues being one of many aspects to themselves. When I was diagnosed, I found numerous sites and books with honest, reputable information. The mental health field is flawed, but clinicians, those with diagnoses, and families are working to promote humanity in treatment and eliminate stigma.

The most notable bit of information you will find on advocacy, support, and professional websites is that psychiatric problems suck. The drugs are barely tolerable, families can rip apart, careers can be destroyed, clinicians are overloaded and can't always help as much as they want/should, House is about the most accurate depiction of psychiatry you'll find in popular media (Though I appreciate their compassion, Risperdal doesn't induce lactation within hours and hypnotism isn't typically used by physicians) - I have enough material for a few books on the Fits-Diagnostic-Criteria Subject.

So when I went to look up information on rheumatoid arthritis one day - possible diagnosis at the moment - I was surprised at what I found. The Arthritis Foundation paints a picture with Sweet-n-Low spiked paint of autoimmune-related arthritis, and sites like WebMD takes a Calvinist approach to explaining etiology and self-care.

To sum up:

It's not a big deal, and it's your fault you feel like shit. Go for a walk or something. And eat fish. Lots of fish. Fish cures everything. Fish and walks.

Alright, maybe I'm being snarky. Well, I am being snarky.

But I'm also being honest.

To the point of the blog!

1. Day in the life of a twenty-something mom and wife in suburbia who swears a lot, often while stubbing toes or having conversations with a priest on existentialism, but in writing as well. 

2. Handy tools for living.

3. Research and theory on autoimmune disorders and psychiatric diagnoses. Plus comorbidity of the two - yes folks, there's research on that, some disorders might share the same etiology as autoimmune disorders, and the ideas are not fringe-y.

I'm not the only one who finds absurdity in some of the issues surrounding advocacy and treatment in RA: the lovely lady at RA Warrior has been fighting the BS for years now. Visit her site, it's awesome. My blog's focus will be more on my life and information on things I find interesting. Maybe someone will find this blog helpful. Outside of, ya know, me.

- Elisabeth