Today, I had to advocate on behalf of a family member to get appropriate services for his health care needs. In the process, I gave the institution feedback about the way they run the patient and family meetings. They told me they did them that way to comply with state regulations about making sure that the meetings are patient- and family-directed. I thought the whole process was ridiculous, which is why I was working on a course correction today.
Their version of the meeting included 20 staff members around a long table, and the patient and family at the far end, away from the people who they needed to talk to. The meeting started with introductions (of a bunch of people who are not working on the patient’s case as well as a few who are and who don’t identify themselves as such). Then the administrator who was running the meeting turned to us and said, “So what’s your question?”
The whole thing was pretty intimidating. We couldn’t figure out how to get the information we were looking for, shouting across the table in front of an audience of professionals. They gave us generic answers in a way that was meant to get us to accept their plan without further input. It was terrible.
I decided the situation was unacceptable and wrote a letter asking for a proper meeting, which they gave us today (the same day I handed in the letter). Then we had a meeting in which we discussed the plan for the patient, they told us in detail their expectations and why they had proceeded the way they had up to this point, the patient had a chance to say what he thought, and the family members, including me, had the opportunity to ask questions and make suggestions.
The rest of the day, all I could think about was the crappy care I received as I was trying to get a diagnosis of the tick-borne illnesses, back when I was extremely sick. Back then, I couldn’t advocate for myself. I could barely stand up or hold a thought in my head long enough to verbalize it. I was in terrible pain, losing weight because my digestion wasn’t functioning, and frustrated because the medical staff thought it was okay to send me home and see me in a week to do another test. My main supporter, my mother, wasn’t sure how to navigate the dysfunctional system and was afraid to step on my toes. (I was difficult to deal with because the pain made me highly irritable.)
Later on, I ran into a doctor who was mortified that I hadn’t been hospitalized. In a sense, he was right. Given my condition, especially the leg paralysis, it makes no sense that the doctors who examined me thought I should just wait until they could think of something new to test for. The situation was, in reality, dire. Only one doctor, a gastroenterologist, put me on the fast track for testing. She considered my digestive problems urgent in nature and squeezed me in by coming to work early.
I didn’t want to check in to a hospital. I still avoid them whenever possible. Emergency rooms are geared towards stabilizing patients and moving them on to other locations to resolve the problems that bring them in. I’ve been to them three times since this illness incapacitated me. One time my doctor sent me because he was afraid I had appendicitis. Emergency rooms know how to test for and resolve that, so it made sense. It wasn’t appendicitis, so I followed up with my doctor once we were sure the problem wasn’t life threatening. The other two times were with the kidney stone. I debated going both times. They turned out to be appropriate uses of the ER because the doctors know how to stabilize a patient with a kidney stone while giving referrals for follow up care.
Way back in 2001, after I got all these illnesses, but before I knew about them, I was rushed to the emergency room because I fainted in a supermarket. They helped stabilize my blood pressure with fluids and woke me up. A doctor there found a heart condition (that I still have from one of the tick-borne infections) and told me to come back if I had any difficulty breathing, especially in the subsequent 48 hours. I went back when I had tightness in my chest. The medical staff decided it was a panic attack. I wasn’t interested in their psychobabble. (I did have a panic attack after I got there and they started to mistreat me.) After that, I decided no more emergency rooms for symptoms that aren’t life threatening. Better to wait it out and see a regular doctor if it doesn’t go away.
I avoided checking into a hospital with the leg paralysis because I had no perspective on what they would do there that could help. Later, when I realized that, at the very least, they could have run all the tests in three days that took me months to schedule, I thought, maybe that would have been okay. But I was terrified of getting an additional infection in the hospital. I didn’t want to deal with the crazy hours they schedule for bloodwork, the noise, the lights and the lack of sleep. I didn’t want to have to fend off pain killers or fight about taking psychiatric drugs. I knew there was something wrong with my body, but based on the reactions of the doctors I did see, I knew that they assumed my problems were psychosomatic when the tests they ordered didn’t generate a clear diagnosis.
My conclusions are that the health care system is falling apart. It certainly can’t deal with controversial, difficult-to-diagnose conditions like mine. Now I know that it doesn’t even deal efficiently with run-of-the-mill conditions like the one my family member has. As the system collapses, it gets harder and harder to get effective help for anything more complicated than a flu vaccine.
Given how much my legs hurt this morning, I know the Lyme Herx isn’t over. So I stuck to Candida today.
The Candida treatment is still at 10 minutes on my abdomen because I still have some symptoms in my intestines and I’m still breaking out on my skin. In the next few weeks, I’m going to increase the amount of probiotics I take to increase the intensity of the treatment. Then I’m going to add coiling time for other parts of my body. Even though I estimate it will take at least a year to completely get rid of this infection, I’m quite happy with how far I’ve gotten.
- Candida, abdomen, 10 minutes
I was reminding myself today that the purpose of detoxing is to support my body’s functions, not to find new items to feel bad about not doing. So I stopped worrying about how much time I spend on the BioMat, what happens if I miss 2 days of kombucha or one castor oil pack. I’m doing quite well with the detoxing process. Lots of these activities are cumulative. I don’t see a big difference from one day to the next, but I do see an increase in my strength that seems to be lasting this time.
- homeopathic support
- juiced greens
- skin brushing
- BioMat (40 minutes on level 2)
- castor oil pack on liver
Mom added a bit of fennel to the juice today. It was highly refreshing.
The Herx is continuing to bounce around inside my body (or my spinal column?). No night sweat last night. I slept quite well until my furry, orange alarm clock decided he didn’t have a snooze button this morning.
I started the day with low back pain that went away after I got up and moved around. The real kicker today was bilateral pain in my legs from the knees down. The pain was in my joints, muscles, bones and skin. That’s right, skin. The skin was hypersensitive. The fabric of my pajamas made it hurt more.
I’ve had a headache all evening. I’ve had floaters in my vision all day. I have bone pain in my forearms and hands. My neck is stiff and hurts around my spine, going down into both shoulders.
On the plus side, I had an apetite today.