These little indignities

My back started hurting in the middle of the night on Saturday. I didn’t lift anything heavy or exercise or slip. I was just lying in bed. I walked around and tried to stretch but I could barely walk. I took round the clock pain meds for the next two days and overthought why it hurt. I thought about the likelihood of pyelonephritis, splenic distress, compression fractures. It was not my best work. (If you’re looking to not sleep when you have sudden onset back pain that started at night, google “night time back pain.” You’ll be all set.)

Pain is a huge trigger for me. My doctors recognize this and agree that managing my pain is very important to avoiding anaphylaxis. Honestly, it is probably the lynchpin to this whole shebang. When I can maintain a workable baseline, I get stable pretty quickly. So when laying on a heating pad is giving me 6/10 pain and walking is more like a stabby 8/10, it bodes poorly for my no epi streak.

I called my PCP’s office first thing on Monday morning. It was easy, since I had been up all night in pain. I told her who I was, that I had a rare blood disorder and that being in pain could cause me to go into shock. The receptionist was dismissive.

“You can see another doctor,” she started before I cut her off.

“I’m not going to spend an hour explaining my disease to someone who doesn’t know me,” I said, wincing. I am all for educating, but not when I am in huge pain and borderline mast cell attacking.

“Well, then it looks like you’ll be waiting until 3:30, because that’s the only time he has room. It’s the same rules for everybody,” she said, her voice half an octave higher than it was when she answered the phone.

“Tell him it is me and that I am in a lot of pain. Just tell him. Don’t schedule anything. Just tell him I am in a lot of pain.”

“Okay, I’ll tell him when he comes in at 8:30,” she answered.

At 8:32, I got a phone call. “He says to come in right away, can you be here at 9:45?” she asked, a little breathless. “Yup,” I said, warm with victory.

It was a small win, but it mattered a lot. “It only took you ten years to find a good doctor,” my mother commented as she drove me a few towns over to his office. It’s true. I have lost count of the doctors who called me crazy, accused me of Munchausen’s, thought I was drug seeking. Also numbering into the dozens are providers who refused to acknowledge or effectively treat my rare disease. The amount of health care losses I have accumulated over my lifetime is staggering.

I take Zofran three times a day, every day, in order to not constantly throw up. I have a prior authorization for the quantity. This summer, my doctor wrote a prescription for 270 tablets per 90 days. The mail order pharmacy filled it correctly and shipped it out. In October, I submitted a refill request. When the order arrived, the prescription had been altered to 27 tablets with 40 refills because “that many ondansetron is obviously an error,” the pharmacy supervisor told me. After three phone calls, they eventually agreed it wasn’t an error. I had to call three more times to get them to agree to change the prescription back and send me the 243 tablets I was owed. Over 15 hours of my life to correct a mistake.

Last week, I went to pick up a prescription at my local pharmacy. I worked for this pharmacy chain in the pharmacy for almost ten years. They told me I didn’t have a prescription to pick up. I gave them information on when it was called in, when I was notified it had been received, and suggested that it had been returned to stock. Two of the staff behind the counter reiterated that there was no prescription, that I was wrong, that it had never even been refill requested so I was just confused. When I explained again that I couldn’t go without this medication, the pharmacist snapped, “You don’t need to tell me that!” before turning away. Awesome.

“You think it was returned to stock?” the third staff member asked. “Yea, I’m pretty sure,” I said, pretty irritated after ten minutes of arguing. “I’ll take a look,” he offered. I sat down and waited.

Thirty minutes later, one of the other staff members called my name. The prescription was ready. “You found it and you didn’t even tell me?” I asked, incredulous. I had now wasted an hour in the store. She rung me out without looking at me, obviously offended by the audacity in asking them to find a prescription for a medication I cannot go without. She shoved the prescription across the counter and walked away. Two months ago, this same pharmacy dispensed me a prescription for 1mg prednisone with both 1mg and 5mg prednisone in the same bottle. I got a phone call with a bored apology.

These little offenses constitute a huge portion of my yearly interactions with the healthcare industry. For every one person who is interested in actually rendering me decent care, there are many more who think my case is too complicated to be worth the time. For every pleasant interaction, there are five incidents in which I am treated rudely. For every ten mistakes that are made, one may actually hurt me. I lose hours and hours to begging people to correct mistakes they made so that I can get my medication or medical supplies or appropriate treatment. The effect this stress has on my health is significant.

Patients are disadvantaged in their relationships with health care providers. The system is not set up to work for us. It can be a struggle to get medication and appointments and records and care. We stand to lose much and they stand to lose nothing. If they treat us poorly, there is very little chance of real consequences. If they make incorrect notes (THIS HAPPENS ALL THE TIME), they are unlikely to fix them even when you point out the errors. If they label you as crazy, all of your providers will see that note for years to come. It is frustrating and insulting and sometimes humiliating. We just have to take it.

But the alternative is to not get care, and that’s not an option for people like me. I have no choice but to regularly submit to these situations which literally sicken me because they have something I need. It’s scary going to doctors you don’t know, and going to unfamiliar emergency departments, and switching insurance, but the only way out is through.

I saw my doctor on Monday morning. We ruled out all the scary stuff and he wrote me some muscle relaxers. We discussed a pain med schedule and he sent me on my way. “Call me if you any problems,” he said on the way out. It was a good reminder that sometimes it’s worth the trouble. We may have to fight for treatment in the system, but outside of it, there’s no hope at all.

We can do this.  Stand up and fight.

 

5 Responses

  1. Deanna Pindell December 30, 2014 / 11:26 pm

    Two compliments: First, I am consistantly grateful for the content you write, the clarity and honesty you bring to the topic along with the sound scientific basis.

    but even more than that, in this article, the poetry of courage and honesty moves me. thank you for the artfulness of this essay.

    Warmest hugs.

  2. Judie December 31, 2014 / 9:34 am

    Thanks for sharing. What kind of pain schedule did he put you on? I am getting increased pain, sometimes body wide which may be related to a trigger. I always have just dealt with it but as I age (56) i am starting to consider my quality of life more and I am wanting to discuss it with my doctor, I have EDs, systemic mast cell disease and RA. Between the three it am lucky if I get 5 days a month without pain. It’s starting to wear me out! I am luckily not depressed by it but I can see how it can cause depression.
    When I do take meds I appreciate the few hours of relief. I am active and want to stay active. Anyway I appreciate all you do, I learn so much from you, Thank you for taking the time to research and educate us all. Happy new year.
    My daughter has many bouts of vomiting, I am going to suggest she request of ran.
    Judie

  3. allison December 31, 2014 / 10:50 am

    Best one yet, Lisa. This is my heart on paper. Well, screen. Im so thankful for you. HNY!

  4. Yvonne January 5, 2015 / 4:42 pm

    Awesome. I’m so glad you have found some help. Love to hear that my experiences are not isolated. Is it bad that I feel better knowing I’m not the only one having these troubles with the system? I think that you make us feel better/stronger by sharing your story.

    Thanks again

  5. Deborah Ewing November 21, 2015 / 9:30 pm

    I have been battling systemic mastocytosis for 10 years. I have been in severe bone pain . This year through testing I found out that 40% of my bone marrow was mast cell tumors and that my lymphatic system is now involved. I have spent this year with nausea everyday. I have had my second round of chemotherapy (first round was three years ago) I received five months this year . My tryptase level was over 300 when I started chemo in March , it was 75 when I finished . The good news is I have found a wonderful physician Dr Paul Shami at the Huntsman Cancer center in Salt Lake Utah. He is starting a clinic for Mastocytosis and will be running trials for suppression of the CKIT gene which is the driver for the mast cell. I am planning to be in his study. Every time I have an appointment with him I walk away with HOPE . During this process I have felt hopeless until I met Dr Shami, I searched the country for help and was lead by unseen forces to the Huntsman and Dr Shami. At one point in this long process I was Experiencing anaphylaxis daily one time I was hospitalized and in anaphylaxis for five days, no one thought I would live. I am posting his number for anyone who has lost hope, I know you will find it if you make the call. 801-585-0236 his assistant is Deirdre Driscoll. The Huntsman Cancer center is a non for profit hospital all money they make goes back to the care of the patient. No matter where you are make the call it has been a life saving experience for me and it has renewed my faith in the medical community

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