CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
I got sick on March 9, and I can’t really say that I’m all better.
I also can’t say that I’m surprised. Lupus is ugly. Things hang on.
What has surprised me is how difficult it’s been to get medical care this time around. Since my last flare, I moved an hour inland and we became a single car family. I also have a son in half-day kindergarten, and I’m only just getting to the point that I think I could stay awake and keep the pain quiet long enough to drive to my old doctor and back. When I was coughing up blood, doubled over from abdominal pain, running fevers over 103 degrees—that wasn’t true. I needed to find a new primary care physician and a new rheumatologist, get my records transferred, and start getting some help. But it’s not that simple, and help is still a fair distance away.
March 9, 2011: I wake up with moderate cold symptoms and severe abdominal pain on the right side. It’s enough to keep me in bed, and it gets worse every day.
March 17, 2011: The abdominal pain has persisted, and I can’t drive the hour to my old doctor. I know I need imaging, so I go to the big city hospital. I wait six hours to be seen. I later learn this is normal for the hospital here. CT is negative, though my urine is positive for blood. It’s not enough to be worried. I get Percoset and go home. The abdominal pain lessens over the next two weeks.
April 5, 2011: I wake up with a fever of 104, sore throat, cough, trouble breathing. I call my mom to come help me with the kids. I haven’t been out of the house, except for my ER trip, since I voted in school board elections on March 8.
April 8, 2011: A Friday. I’ve improved enough, but I wonder if I should be seen for all the junk I’m coughing up. I arrange a ride for Monday to my doctor. I call, but my doctor doesn’t work on Mondays. I’m also informed that antibiotics are contraindicated for bronchitis. (I do not believe that this is true of lupus patients.) I hang up.
April 11, 2011: I’m now coughing up blood, so I’m off to the big city hospital again. This time, I bring a pillow, lap blanket, two liter bottle of Coke, light snacks, over the counter meds, phone charger, and books. I wait five hours and change to be seen. My x-ray is negative for “obvious pneumonia.” I’m given a nebulizer treatment, an inhaler, doxycycline, and a cough syrup that will make me lie on my bed and watch the ceiling fans with Zen-like peace and contentment. The staff at the ER doesn’t really seem to understand why I’m there, and they are less than warm about the need for me to have a PCP. I have a PCP, I say, but she doesn’t work Mondays. No one believes me. I leave knowing that I can’t go back unless I need to be admitted.
April 19, 2011: I’ve been doing research. I’m now a super patient. I have decided that I want to be affiliated with a smaller hospital in a smaller city. I check their website and google the affiliated PCPs. I begin calling practices and asking if they’re accepting new patients. You need to call the hospital’s Physician Referral Line, they say. I call the number they give me and get a recording—I need to leave a message and wait for a call back from someone who will presumably tell me what doctors I can call. Really? I call the hospitals feedback line to ask if I’m being medically punk’d. Yes, really. I call and leave a message, knowing that I’ll miss the return call.
April 20, 2011: I miss the return call because I’m driving my son to school. I post on my Facebook wall that I could sell my underwater condo and move home more easily than I can find medical care in this Godforsaken county. A friend calls her Smaller City Hospital affiliated PCP and asks if I can call them directly, and they say yes. My body thrills with victory, and I feel my lupus roar like the dragon at the end of the movie, when the sword is driven home. Over the course of the next couple of days, I call and they agree to do my intake on May 6.
April 26, 2011: I fax a request to my old doctor’s office for my medical records.
April 27, 2011: The office manager at my old doctor’s office, hereinafter referred to as the Record Beast, calls me and asks if I sent this request. I confirm that I did. She tells me that I have to drive out to sign a release in person. I say that I can’t get out there; I’m too sick and I don’t have transportation. She says she can’t send the records without their form. I say that I have an appointment in one week and I need my records. I ask if she can send them to me. No. She says that if the doctor’s office calls her directly, she will send a record of my last visit. I’m very ill, I say, I have lupus and I really need my records. She reiterated that she couldn’t help me. I snapped at her and hung up. Then I cried. It should be noted that two hospitals, an urgent care center, three specialists and two primary care physicians have all sent me records in the intervening time from the exact letter that I sent to my old doctor’s office. Everyone else, in fact, has cooperated.
May 6, 2011: I still don’t have my medical records, but New Doctor agrees to see me anyway. I still have a vicious cough, though most of my other symptoms are gone. I can still feel the abdominal pain if I push too hard, don’t rest enough. I’ve made some notes in lieu of my medical records—I’m not sure what that says about me—and he reviews them and gives me a quick exam. (He also tells me that if his office faxes a release that I’ve signed, the Record Beast at the old doctor’s office will have to comply by law. She’d sent New Doctor a list of medications I used to take and nothing else.) He agrees to refer me to a rheumatologist here and I show him the printout of my Lupus Dream Date. She looks about my age—middle thirties—with med school at Georgetown and residency at the hospital at Brown University. Swoon. He says he’ll put it through right away. He asks for a urine sample and has the nurse analyze it on the spot; it’s still positive for blood. With no symptoms of a UTI, two positive results in two months may mean that the lupus is damaging my kidneys. But I’m not very worried, because I’ll be seeing Lupus Dream Date soon.
May 12, 2011: I am finally well enough to be having a picnic lunch at the playground with my son. He’s off showing me his extreme slide tricks when Lupus Dream Date’s office calls. Their next available opening is August 23; do I want it? I’m too stunned to say But my kidney is bleeding or But I can’t walk very well or But it hurts to breathe. I write down the appointment and thank her. And then I cry. I call New Doctor’s office, but he’s on vacation.
May 17, 2011: I receive the form that I had once needed to drive out there and sign for the Records Beast in the mail, with a great deal of yellow highlighting.
May 19, 2011: I receive a phone call from the office of a rheumatologist that I saw once—just once—saying that my new PCP has put in a referral. The reason that I only saw this doctor once is that she 1) wanted to be a genius and diagnose me with something other than lupus after four years, with no evidence to back that up, and 2) actually sent me a letter with bloodwork saying that x, y and z are wrong and I should really follow up with a rheumatologist. Um, you are a rheumatologist. Says so right after your name. I call my PCP back and leave a panicked message for the triage nurse that I can’t go back there and that my kidneys and I are going to take our chances. Over lunch, the nurse calls back and says she’ll figure something else out. Crisis averted, but I’m no closer to a treatment than I was before.
That’s it. That’s all. It’s 70 days today, I think, and I’m not well, not getting better, not even receiving treatment. I guess I’m farther ahead than I was, in that I now have a local primary doctor who seems to be on top of his game… but I’m no closer to an answer, and no closer to getting my life back. I’m OK—but I’m tired, and I hurt, and I don’t understand why it has to be this hard.
I keep thinking about all the people who have illnesses as serious as mine or worse, and the people who are in pain, who can’t do the things they need to do for themselves or for their kids—and in addition to the Records Beasts and the scheduling problems, they lack insurance and transportation and all the other things you need to make health care happen in this country. I’m struggling right now, but it could be so much worse. And it breaks my heart.
Comment away, loves. And thank you for reading. I have missed you!