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.

 

If I’m going to the ER, I better need it

A friend expressed concern this week that I do not always go to the emergency room when I should. It’s a fair concern, and I’ve been thinking about it a lot.

Seeking emergency assistance presupposes that the benefit outweighs the risk. For people like me, this is not always true. People with mast cell disease often have a very complicated relationship with their medical providers, including their favorite local ER. Let me give you an example of how it plays out when I go to the ER.

On the way to the ER, I page the person covering service for my immunologist and GI mast cell specialist. At least one of these doctors will call ahead to the ER to tell them I have systemic mast cell disease and must be treated immediately. They will give orders for immediate IV medications to stop anaphylaxis. I also have a signed letter from my doctor listing emergency treatment protocols, in the event that I can’t get in touch with one of my doctors.

When I arrive, I say the following: “Hi, my name is ( ) and I have systemic mast cell disease. I am in anaphylaxis and need IV meds immediately to prevent going into shock. Dr. (whoever) called about me.” The receptionist may or may not tell me to fill out a form and take a seat. I may or may not have to argue with them. My mother may or may not have to argue with them. Most of the time, I am not looking great by this time, so either way, I am in a bed in the ER pretty quickly.

A nurse comes and puts in my IV. With my terrible IV access, this often takes upwards of twenty minutes. Remember – EVERY time you break the skin of a mast cell patient, you risk anaphylaxis. If I am anaphylaxing, this makes me worse. Getting an IV is dicey for me.

During this time, I speak to three or four other people. They might be nurses, physician’s assistants, interns or residents. An attending physician usually comes over. I tell every single person that I need specific IV meds immediately to prevent shock. I then have to explain this, telling each of them the exact same long, complicated story. They generally react badly, like I am telling them how to do their job. Most of these people have never seen anyone with my disease. Statistically, they may never see anyone with my disease again. I do not have time to wait for them to figure out the exact remedy for someone like me. People like me are directed by our physicians to be forceful and repetitive when presenting to an ER to avoid situations where we wait hours for meds.

If there are any students anywhere on the ward, they will ask if they can observe my (rare and exciting) existence. I always say yes, because medical professionals recognizing mast cell disease can only ever help me.

After half an hour in the ER, I am likely just getting my IV meds. They give them IV push, not infusion, because that is faster and at this point, faster is better. However, giving some of these meds IV push can cause wild variations in blood pressure for mast cell patients. I may or may not have problems related to stabilizing my BP.

Frequently, the reason I end up in the ER is because I had a bowel obstruction that hurt so badly that it triggered anaphylaxis. If this is the case, I am also told to request pain medication to suppress the pain to suppress the mast cell reflex. Most pain medications are not safe for mast cell patients. I am limited to tramadol, fentanyl and hydromorphone.

Telling anyone in an ER that you can take hydromorphone but not hydrocodone or oxycodone is guaranteed to get you an eyeroll and an assessment as a junkie. The fact that this can be easily verified through my medical records (or google) does not help my cause. So I just have to accept the fact that I have been branded as a drug addict. From that point on, I am treated as a junkie for the duration of my stay. People go from being curious and helpful to full of disdain pretty much immediately.

Last summer, the ER wanted to order a CT scan to make sure my bowel obstruction wasn’t turning into something worse. They wanted me to get a pregnancy test and wait for the result before getting the test. I refused because I had been in my OBGYN’s office twice that week and knew that I could not be pregnant. I didn’t want to wait hours longer for a test that I was already going to wait hours for. The physician’s assistant turned to the resident and told him that “she just wants dilaudid, she could care less if there’s a baby in there.” Unbeknowst to me, they called my PCP to let him know that I was “drug seeking.” This sort of things happens pretty much every time I go the ER. It is not unusual for people with mast cell disease.

Please note that this happened at the prominent hospital where I am seen several times a month, a hospital that has a department that treats my disease, and where all of my pertinent medical records reside.

Eventually, the reaction ends and I either go home or am admitted. Funny: as soon as one of my doctors, or their representative, shows up and states that I am being admitted because I have systemic mast cell disease, no one is calling me a drug addict anymore. But they’re not apologizing either. Once I am admitted, I generally have far fewer issues.

The emotional stress of going to the ER has to outweigh the physical stress of my current reaction for me to go. I wish it weren’t that way, but it is. If I cannot breathe, am bleeding freely, or have dangerously low BP, I go to the ER. But otherwise, I’m probably going to wait it out at home.

Experiences like this are the reason why rare disease awareness is so important.