Chronic Illness Perspective: Life’s Minor Inconveniences

A tiny fire started in my microwave last Friday and I didn’t catch it until the smoke rolled into the dining room. We were 20 minutes from leaving town for the weekend, so I set up the medical-grade air filter and figured the smell would be gone by Sunday night. Um, no. Although I never actually saw flames, the smoke damage ruined the microwave and permeated the walls and cabinets.

This was a minor household mishap — no one was injured and the damage is small and fixable. What I can’t get over is that I found the situation funny.

Really? Who reacts to a house that smells like smoke and days of cleaning with amusement? Yet neither daunted me. I could only see that my kitchen would be the cleanest it has ever been and that I might be required to paint the kitchen cabinets, which I’ve wanted to do for years. Isn’t that weird?

Trying to figure out the sources of my amusement led me to chronic illness. The many strategies I’ve learned to keep illness from subsuming me are useful for managing any sort of distress. A problem that doesn’t bring harm to anyone and doesn’t permanently damage my home just isn’t that big of a deal.

The fact that I actually feel well enough this week to do the work played a large role in my response. If I were relegated to the couch and had to smell the smoke without being able to do anything about it, I’m sure I’d be pretty frustrated. Still, this is the kind of thing that would have sent me into a tailspin even in the years before I got too sick to cope with the world. Being stuck on the couch this week would have been annoying, but I don’t believe I would have been fretful and distraught.

Chronic illness has given me so much valuable perspective. I’m not grateful for being sick and I will never say it is a gift, but after being so sick for so long, the minor inconveniences of life don’t matter all that much. I do appreciate the perspective.


Stem Cells for Headache, Migraine

Could stem cells reduce migraine or headache frequency and severity? Anecdotes and at least one study indicate they could be useful for migraine. They’ve also been studied for traumatic brain injury and trigeminal pain, according to James from Headache and Migraine News. Stem cells are used for a variety of inflammatory conditions, so their potential efficacy for migraine and headache is not unexpected.

Headache specialist Dr. Alexander Mauskop wrote about stem cells form migraine and headache last week, which is the first time I’d heard of the connection. He describes the research and why stem cells might be beneficial in an accessible and succinct way — far better than I possibly could. Read Stem Cells for Headache for the details.

Early stem cell research was done with cells from aborted fetuses, so it was highly controversial. Fortunately, stem cells can come from many different sources, including a patient’s own fat. Research into stem cells for a variety of conditions is exploding — I’m happy to see migraine and headache getting some attention.

Stem cells are definitely an interesting topic for research to explore, but this treatment is nowhere close to ready for widespread use. (I add that caveat because some companies who provide stem cell therapy do promote its use for migraine and headache.)


Good Doctor Stories

Despite my terrible experience last week, most of my experiences with doctors have been excellent. After such a negative post, I want to highlight some of the great doctors I’ve encountered.

There’s the doctor who held my hand, looked me in the eye and told me she’d never give up on me. That was nearly five years ago and I still tear up when I think of it. Her kindness and sincere desire to help were a beacon of hope when I was at rock bottom.

When I moved back to Phoenix, I saw a new headache specialist who spent two hours listening to my migraine history. Two. Hours. He seemed genuinely interested and didn’t talk about a treatment plan until he knew my entire story. He helped me piece together my history and see that my childhood illnesses were very likely migraine attacks with little or no head pain. The treatment plan he came up with was comprehensive and addressed all of my needs.

For a while I was seeing my current headache specialist and another concurrently. The secondary specialist started me on Lyrica and it caused me to have suicidal thoughts. That was the last straw for anticonvulsants for me, but that doctor still pushed me to try Topamax. My current specialist understood my reluctance and has never again suggested I try an anticonvulsant.

When I told my headache specialist how helpful DAO has been for me, he was thrilled for me. He didn’t care that it’s not a scientifically proven treatment, nor did he care that he wasn’t the one to tell me about the treatment, he was just happy that I’ve finally found some relief.

Those are the some of the biggest moments, but there are so many little things that add up to feeling like I’m well cared for:

  • Being listened to
  • Acknowledgement that my symptoms are both real and debilitating
  • Being honest when they’ve reached the limits of their knowledge
  • Not telling me they know exactly the treatment that will do the trick
  • Not encouraging me to retry medications that I’ve had severe side effects from
  • Asking if I want to have children (I don’t, but if I did, it would affect my treatment in numerous ways)
  • Having respect for my writing about migraine (they don’t have to read it, but I do want them to acknowledge there’s value in it)

Last week’s doctor failed on every one of those counts (and I actually wrote the list months ago), but most of the doctors I’ve seen shine on all points. I’m tremendously thankful for the incredible care I’ve received from headache specialists.


Setting My Skepticism Aside

Several of you have sleuthed out which doctor I saw last week and, upon reading her website, have asked (kindly) why in the world I even saw her. “Quack” is the word that comes to mind looking at her site — her version of science is hogwash and her treatment practices are over-the-top woo. The appointment proved that she is indeed a quack.

Why is someone who understands and appreciates science, dislikes quackery, and has solid critical thinking skills seeing a doctor like this? It’s really quite simple: I want to feel better and current medical science isn’t moving quickly enough for me. If this doctor had given me even one piece of helpful information (and her credentials indicated she could), the visit would have been worth the money spent.

This is odd an odd place to be. I have the utmost respect for Western medicine and appreciate that diagnoses and treatments are well grounded in science. Pursuing treatment that has little or no empirical evidence to support it goes against my inclination. However. The most improvement I’ve had has come from a treatment that’s untested and unproven for a diagnosis that’s outside mainstream medicine.

I continue to set aside my skepticism (as long as I don’t believe a treatment to be harmful) because Western medicine hasn’t yet been able to help me much. I haven’t given up on allopathic medicine, but I’m also not sitting around waiting for it to catch up to my needs. If I had, I wouldn’t have felt better in the last nine months than I did in more than a decade.

My ability to function is more important than money or having my beliefs called into question by finding a treatment that goes against the grain. I won’t bankrupt myself for a treatment and I won’t try anything I deem potentially harmful or total bull. I evaluate every provider I see with logic and reason and, if I have to stretch my boundaries a bit sometimes, that’s OK. Time out of bed is the most precious commodity I have and I will always seek to increase it. This is my life.

(Since some of you have asked: I didn’t do any of the tests and will not be seeing this doctor ever again.)


So-Called “Patient-Centered” M.D. & the Worst Medical Appointment of My Life

Having such severe and varied symptoms as I have had for so many years means I’ve seen A LOT of doctors. Most have been compassionate, knowledgeable and kind, with a few appalling exceptions. Yesterday’s was far worse one ever. Ironic, given that this is the first M.D. I’ve seen who specializes in functional medicine, a patient-centered approach that considers the whole person by spending time with and listening to the patient, according to the Institute of Functional Medicine.

Sounds great, right? Except that she seemed to have missed the memo. She explained that has an M.D. and practiced as a gastroenterologist for 30 years, but got into to functional medicine to consider the physical, psychological and spiritual aspects of patients, including their “roots and soil.” She then interrupted me non-stop and got aggressive and angry. A handful of examples:

  • She’d ask questions then cut into my response almost immediately to explain why what I was telling her (about my own life and experience) was wrong or inaccurate.
  • When I misunderstood a question, she let me answer for a minute, then barked, “That’s not what I asked.”
  • I tried to clarify a statement. She cut me off and said my response “didn’t matter.”
  • She told me she would not call what I have migraine, that I have headaches. (I’m not too picky about whether the attacks are called migraines or headaches, since that’s the terminology that specialists and researchers use, but I’ve never had someone refuse to acknowledge migraine at all.)
  • The dietary discussions were all either her saying, “Really????” when I mentioned a trigger or telling me I had to stop eating something and that I should try the alternatives. I’d list all the alternatives that have been triggers and she’d say, “Really????” There was no input, no guidance, no connections, just disbelief.
  • She was 70 minutes late to start the appointment. At the end, she handed me off to the person who could give me prices for tests and told her, “These are the tests I want ordered. There’s no dietary plan or supplements because she’s too sensitive.” Then she left. No “It was nice to meet you” or “We’ll try to figure this out” or even “Thank you.”

As galling as all those examples are, it gets way worse.

The main assessment: I have migraine because of a psychological block from my childhood and I need to do some deep emotional work. When I mentioned the great work I’ve done with my therapist in the last year, she said that if my therapist were going deep enough, my migraine frequency would have declined. (That’s the only time she said migraine instead of headache.) The solution? To journal at home. With my non-dominant hand.

She pleasantly explained that she’d read all the ingredients in a supplement aloud and I should tell her if I’d reacted to anything that was in it. She got through one list and, when I said quercetin had triggered migraine attacks in the past, she said, “If you can’t take this [supplement], then I have no idea what I can do for you.” Later, she sighed and said, reluctantly, “We’ll see what we can do for you.”

Then she told me about the tests that she’d need to do to figure out what was wrong with me. Although the office doesn’t take insurance, she asked what my health insurance company is. “That’s terrible,” she said. “If you’d had X or X, they’d reimburse for these tests, but your company doesn’t.” Then she said that the most helpful test she wanted to do was $2,000, but she wouldn’t order it because of the cost. The other tests she wanted me to do totaled $2,228.63. I’ve looked into the recommended tests. They all claim to gather tons and tons of seemingly useful data (a seductive prospect for someone who is trying to make connections to improve their health) that has absolutely no solid utility.

Hart’s take: She’s a fraud who preys on sick and desperate people. When I arrived with 10 years of records from impressive medical centers and a detailed dietary analysis and used medical terminology with ease, she knew she couldn’t pull the wool over my eyes. She was aggressive and accusatory to show me that she couldn’t help me through no fault of her own, but because I was in the wrong.

I agree with his perspective. I was already suspicious of the office’s financial set up. According to their website, they don’t accept insurance because “we prefer to have a direct relationship with our patients and to give them the opportunity to make the final decision as to which treatments are most beneficial for them.” Some perfectly reputable health care providers don’t take insurance, so that alone isn’t a red flag. Right before the appointment, I learned they charge for medication refills through a pharmacy. Afterward, I discovered that every test they do has an added service charge of $40-60 and another $40 if shipping is involved.

I know enough about migraine, medicine and my own body to know this doctor was mistreating me to save face. I was able to get angry and not be heartbroken by having an “expert” tell me there was little hope for me. If this had happened 10 years ago, I would have been devastated. I would have believed that I would never be able to find relief from migraine, not that the doctor was blaming me for her shortcomings.

That’s what I’m angriest about. I saw through her bullying, but what about the people who do arrive in her office doe-eyed and terrified? Either she takes them in for thousands of dollars of tests, supplements and follow-up appointments or they leave believing they’re a hopeless cause. How is that patient-centered? How is it in the best interest of anyone or anything other than the doctor’s bank account?