My body and your religious beliefs

June 30, 2014

A few years ago the Supreme Court of the United States (SCOTUS) ruled that corporations are people. Yeah, no kidding. Today, it ruled that those “people” can deny birth control coverage to their employees. Yeah, again, no kidding.

If you’re not familiar with these, you can read about corporations being ruled “people” here, and you can read about today’s horrible decision on birth control coverage here. Go ahead, I’ll wait.

Welcome back. In case you didn’t read all of it, the basic idea is that health insurance in the U.S. is usually provided by companies for their employees. Yeah, that’s messed up, but it’s a discussion for another day. The federal government mandated that this health insurance coverage has to include preventative care, including things like cancer screenings and birth control. Birth control is incredibly controversial here in the U.S. (Maybe I’ll talk about my opinions of misogynistic policy-makers, pundits, and loudmouths another day.) A couple of family-owned companies sued, saying that birth control pills, IUDs, etc. could be assisting abortion (even though medical science says otherwise) and that therefore they are against the owners’ religious beliefs. They therefore believe they should not have to provide coverage that includes birth control pills, IUDs, etc. They argue that since it’s about their freedom of religion, they shouldn’t have to pay the penalties, either. And the court bought it. Or, at least, 5 male justices bought it.

The decision was written so that it was clearly meant to be narrow; it should apply only to these particular businesses and only to birth control. But we all know that the door is now open to any other business that wants to sue. And if the court rules that birth control is an “acceptable” religious objection but that pork-based pills or transfusions or whatever else isn’t an “acceptable” religious objection, then they’ll be showing preference for one religion over another. They can’t have that. So where would the line be drawn for healthcare coverage denials?

I have been railing against this ruling on Facebook all day. I am pissed off like you wouldn’t believe. In order to keep my cortisol levels from skyrocketing, I won’t get into this here today. I just want you all to be aware of this ruling. And to say that I believe this, above all else, to be true about the state of healthcare today for those who are not wealthy enough to afford care without insurance coverage:

Who should make decisions about my healthcare:

  • Me
  • My doctors/healthcare providers

Who actually makes decisions about my healthcare:

  • Me
  • My doctors/healthcare providers
  • My health insurance company
  • My disability insurance company (by denying a claim, they take away my health insurance)
  • My government
  • My employer
  • Pharmacies (for example, Walgreens now insists on calling doctors to personally verify prescriptions for opioids)

See the problem?

What do you think about this ruling? How does it make you feel? And who else makes decisions about our healthcare? Who did I forget? Please share in the comments!

17 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Politics, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

What about the infectious diseases?

June 18, 2014

It started with a Twitter chat about different thyroid meds. Then we were emailing about hypothyroid. It morphed into conversations about our families, our hometowns, and the other stuff of life, but it always came back to health stuff. And then the other day Miss Diagnoses emailed me a transcript of an interesting talk about tick-borne illnesses and how their symptoms often masquerade as autoimmune diseases. Hmm. There’s something familiar about that!

I read the 21 page transcript, then I visited the doctor’s web site. I ordered his book from my library system and will pick it up next week when it arrives at my local branch. I considered trying to visit this doctor, without insurance, 5 hours away. And then I checked myself. How many times have I traveled down a similar path?

There are so many things that could be the cause of my health problems. There are so many things that could be contributing factors. It’s hard to know which to pursue. But every time I see a potential answer to the big question, I grab hold of it like a life jacket in the middle of the ocean. Then I remember that there’s a boat nearby. I’m just not sure if I can manage to swim to it, or if it might have a hole in the bottom. Because if I see the wrong infectious disease specialist, I might be told I don’t have any infectious diseases even though I do. Or I might be told I need treatment that I don’t need. Or I might be given antibiotics for 1 month when I really need them for 1 year.

There was a time when I believed, as so many people still do believe, that if you get sick, you see a doctor, they find the problem, they treat you, and you get better. But I know better now. I have literally dozens of stories to disprove that neat little theory. Take last fall. I saw a sleep doctor who said there was nothing he could do to help me. He gave me a referral to a sleep psychologist. Great. Then I saw someone else in his practice (the doctor I’d originally been trying to see anyway!) He ordered tests that the first doctor didn’t even suggest. He suggested a medication change that the first doctor ignored. I ended up with a sleep apnea diagnosis that the first doctor never considered. And he prescribed a CPAP machine that I was clearly never going to get from the first doctor. The CPAP has made a huge difference for me. I sleep so much better, and I feel more clear-headed. Some nights I haven’t used it all night for one reason or another (an ear infection, congestion, a weird dream that caused me to take it off in my sleep) and there’s a noticeable difference the next day not only in my fatigue and energy levels, but also in the clarity of my thinking. More than that, if untreated, sleep apnea can be dangerous. One doctor diagnosed it. Another never considered it. And that was in the same practice.

I can give similar stories in the fields of endocrinology, rheumatology, internal medicine, physical therapy, psychology, dentistry, orthopedics, and probably others that I’m not thinking of right now. So why should infectious disease or any other specialty be any different?

And yet I know that I need to pursue this. And visiting an supposed-expert 5 hours away for many hundreds of dollars just isn’t the most realistic approach. I need to find someone local, and I really won’t know if they’re any good until I try them. And even then, I don’t know enough about the field to be sure. But I’ll try, because what other option is there? Can I really risk leaving this stone unturned?

I started a list tonight of new paths to pursue, new potential pieces of my health puzzle. Maybe this isn’t one of them. But there’s no way to know until I try.

If you know of a great infectious disease specialist in Boston, please let me know in the comments or email me at msrants at gmail dot com ! And I’d love to know about your experiences with infectious disease diagnoses and research.

7 Comments | Educating, Expectations, Frustration, Healthcare, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

Chronic illness mentoring

June 5, 2014

“My friend was just diagnosed with multiple sclerosis last week.”

She said it because she’d overheard me telling someone else about some good resources for studies that had been done, but for someone newly diagnosed, I had other advice. I told Amy that a lot of people lose their friends when they get sick and are no longer able to be as social as they had been before. I told her to make it clear to her friend that she’d be there for her, no matter what. And that she then needed to follow through. I told her that a lot of web sites indulge in fear-mongering, and that she needed to tell her friend to ignore those sites. I told her that her friend needed to talk to others with MS, but only the ones who could be realistic and encouraging, not the ones who are in denial or who will tell her that her life is over. Amy asked how her friend could find the right people while avoiding the wrong ones and I told her to do the research herself, to go on Twitter and on blogs, filter out the negative ones, and give her friend links to the better ones. I warned her that it would be scary and discouraging to see some of the writing, but that it was the best way to help her friend from hundreds of miles away. Amy said that her friend was wondering if she should leave her job and I told her to tell her friend not to give up anything before she has to; when she becomes too disabled for her current work then she can find something else, but there’s no reason to act disabled before she really is.

And then I gave her my email and phone number and told her to have her friend get in touch with me. But I doubt the friend will.

When I first started feeling sick, I felt so alone. I didn’t know anyone else with symptoms like mine. I looked in books, but I didn’t find anything. The world wide web was just coming into existence and didn’t have a lot of information. As my symptoms progressed and the internet grew, I tried again, but with no luck. Now it’s the opposite: there are too many places to turn. Someone who is newly diagnosed can easily be bombarded with information, some accurate and some not. There are scam artists and legitimate resources. There are bloggers who talk only about the worst symptoms and others who act like life will never change. There are horror stories scattered across social media like landmines. There are so-called “inspirational stories” leaving most people with unrealistic expectations of what they are expected to achieve. If you look hard enough, you just might find, hidden amongst all of that, a few people talking about the reality. They discuss the good and the bad, the easy and the difficult, and present it as fact.

What’s missing, I realized while I spoke to Amy, is a mentor. There are probably a few hanging around the web, but I haven’t met them, and I imagine they’re even harder for a newcomer to find. We see mentors in business situations all the time, but where’s the mentor for someone newly diagnosed with a chronic illness? Where’s the person to guide you when you’re scared and your family and friends don’t understand? Where’s the person to help you navigate doctors and insurance and nightmares about a scary future? I needed that when I first got sick more than 20 years ago. People need it now.

The other day it was Amy. Last month it was the woman who gave me my tetnus shot. I can’t help everyone, but I’ve decided to label myself a “chronic illness mentor” so that at least the occasional person will feel comfortable calling me. I’ll print up some free business cards and hand them out. I will make no promises. I won’t cure an illness or even make the journey easy, but I hope that I can at least make it a bit easier for people at a very difficult time.

Does this sound like a reasonable approach? How would you offer your help to people? What else do you think I should do? Please comment and let me know.

8 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Kindness, Support | Tagged: , , , | Permalink
Posted by chronicrants

In search of chocolate and reasonable customer service

June 3, 2014

The thing about avoiding gluten is that it isn’t always obvious where the gluten is hiding. I do web searches, but often there’s no clear indication about the product I’m searching, or there’s something clear but it’s 5 years old. Sometimes a product is well labeled, but often it isn’t. And that brings me to my two-day search for chocolate chips.

A different cake made by my aunt

A different cake made by my aunt

Chocolate itself usually doesn’t have any gluten-containing ingredients (though there are exceptions.) However, flour is often used on conveyor belts to prevent sticking, and that means that the chocolate isn’t actually gluten-free. If the chocolate package isn’t labeled, then, how do you know? The answer is that you call the company.

I decided not to have a birthday cake this year. Just having a party will be exhausting enough and I didn’t want to have to worry about stopping at the gluten-free bakery that day. I didn’t mind. Well, not too much. Then my aunt offered to bake me a cake! She’s always been so considerate of my food restrictions, and she’s one of the few who I trust to cook or bake for me.

The other day, with my party fast approaching, she emailed me a list of ingredients. She said she wanted to use Ghirardelli chocolate chips. Yum! I could find the info on the web site, so I called the company 6 times and each time I heard the same message about how no one was available and I should leave a voicemail and it would be returned. I left a message, but it was never returned. Not helpful.

With Ghirardelli not an option, my aunt suggested Callebaut. Again, the information I needed wasn’t on the web site. The first time I called, I got a message about how no one was available, etc. I didn’t leave a message. When I called later, I got a human being – success! Or so I thought. She needed a product number. When I said I didn’t have one, she said she couldn’t help me because they have multiple products. I asked her to tell me which of their chocolate chips are gluten-free, even if it’s more than one, and she said she couldn’t do that. Well, I’m not about to spend hours standing in a store aisle calling customer service numbers where I may or may not reach someone and reading off product numbers! That’s a #customerservicefail if I ever heard one!

Finally, my aunt said she could use Nestle, though it wasn’t her first choice. Maybe it wasn’t her first choice, but it sure was my favorite! I didn’t even check the web site this time. When I called I got a human right away. She didn’t transfer me. She apologized for making me wait about a minute while she pulled up the information. Then she read through multiple items and told me not only that they didn’t have any gluten ingredients, but that the equipment did not process wheat products. That was it. Simple. Straightforward. Easy. The way customer service should be.

I get that gluten-free folks, those of us with an actual medical condition and not just the ones doing a fad diet, might not be the most powerful demographic for companies to reach out to, but they still should. If they ignored every small group, they wouldn’t have many customers left. And really, it’s the right thing to do. Anyone should be able to find out if a product contains allergens. I understand that having a product number might be more convenient for them, but it’s just not realistic for customers. And it’s not necessary. If Nestle can be so helpful without a product number, then should the other companies have that same capability?

So it looks like I’ll get my birthday cake, and it won’t make me sick. Too bad it was so hard to get the information I needed to begin with!

11 Comments | Educating, Expectations, Frustration, Gastrointestinal, Insensitive, Limitations, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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