Why I must be my own medical detective, and you should be yours

March 17, 2015

I just solved a huge mystery. My doctors agreed that it makes total sense. But they didn’t think of it. I did.

It’s not easy to research a health condition. It can feel impossible when you don’t have a diagnosis. I went to the library when my symptoms started, but I didn’t find anything. That was in the pre-household-internet dark ages of the early 1990s. When I got online a few years later, I tried again, but I didn’t find anything. Years later the internet had more information it on so I tried again, and again, no luck. It was looking up symptoms. I didn’t have a diagnosis yet.

11 years after my symptoms started I had a diagnosis, but it wasn’t very helpful. Then I got more diagnoses. And more. And more. Still, I couldn’t piece together the puzzle. I was overwhelmed. I gave up.

One day in the library I was reading a novel and I suddenly had the urge to get rid of (or at least ease) my daily nausea. I found some books, and my journey began.

I was fortunate in many ways. The brain fog was bad, but I was still able to read. It was slow and torturous, but I did it.  I was educated enough to make sense of some difficult matter. I had just enough diagnoses to follow the right breadcrumbs. I had a fantastic library at my fingertips. I found the right books when I was in the right mindset. I was lucky. But I also worked damn hard. It took many, many months to get through those books. And it was worth every minute.

I’ve noticed lately that I have a lot more free time now that I’m not always studying those books and reading websites and following Facebook groups. It’s not that I’m cured, but I learned enough to get stable, and I was ready to take a break before tackling the next thing. I’ll do it at some point, but now I’m resting.

A couple weeks ago I was having bad brain fog. (I still am.) It came on suddenly and I didn’t know why. Maybe it was the estrogen I’d recently started again for my PCOS (polycystic ovary syndrome)? I could imagine why that would make a difference, but that was the only change in my medications. Or maybe it was the change in seasons? I always have trouble when the seasons change, especially in the spring. I checked with my naturopath. She agreed estrogen itself wouldn’t have this effect, but maybe the fillers would. Or it could be the change in seasons. But that didn’t feel right. I know how that feels, and the symptoms, their degree, and the style of onset just didn’t feel like it came from the start of spring.

There was nothing to do but wait and see. I hate that. But I had no choice, so I waited. Then the other day I looked in the mirror and noticed one eyebrow was thinning near the end. That was odd. It’s a classic hypothyroid symptom, but my thyroid has been stable! I have Hashimoto’s Disease, so antibodies are attacking my thyroid. In theory that means that I’ll need to adjust my medications over time, but my immune system has been calmer lately. And besides, wouldn’t the onset of brain fog be more gradual? It didn’t seem right.

Then a few hours later it hit me: the estrogen! I’d read in my research that estrogen affects the thyroid hormone delivery system. I’d paid attention because at the time I was taking estrogen for my PCOS. I went off of it later. If the estrogen I started a few weeks ago was binding those thyroid hormones, then it could have made my current thyroid dose partially ineffective and caused me to become hypothyroid again! This explains other symptoms, too, like my slight depression, moodiness, and increased appetite.

I emailed my naturopath. She agreed. I emailed my thyroid doc. He agreed. I’m getting blood work done tomorrow. There’s no doubt in my mind that I’m right, but the blood work will confirm it and then the doctor can write me a new, higher prescription.

No doctor was going to catch this. That was clear. I was going to continue to get worse and worse and maybe, just maybe, someone would have eventually realized it was my thyroid. But how sick would I have gotten? Instead, we caught it early – I’ve only been on the estrogen for 3 weeks. With any luck, by next week the brain fog will have lifted and I’ll feel stable again!

Being a detective isn’t easy, but it’s necessary. No one cares about my health more than me. No one will fight harder for my health than I will. And no one can understand my body better than me. Someone else would look at my history and say that this was the same thing I deal with every March. Only I could know that it wasn’t because it just didn’t feel like it.

Think about what you know about your body and your health that no one else can know. Then, when you feel up to it, consider doing a little reading. And please come back here and let me know how it goes!

Do you do your own research? Have you felt it was worthwhile? Please share your experiences, good, bad, or otherwise, in the comments!

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

The sad math of getting off benefits

March 15, 2015

Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and 3-15-2015 1-59-07 PMalways did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….

I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, 20120809_220808social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.

But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.

So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.

Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!

So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)

It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.

I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.

If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.

8 Comments | Expectations, Frustration, Healthcare, Job, Limitations, Politics, Rants | Tagged: , , | Permalink
Posted by chronicrants

My improved health: how I got here

February 16, 2015

A friend recently asked me what has helped me the most. I’ve thought about that vaguely from time to time, but this time I really considered what got me to where I am.

Three years ago I had left my job hoping to go back soon, and instead I found myself feeling steadily worse. I was house bound 3-5 days per week, on average. An afternoon with a friend would leave me barely functioning that evening and all of the next day. My memory was lousy, I was nauseated all the time, the fatigue was debilitating, and the pain was getting even worse.

Now, I only spend 1-2 days at home each week, and when I go out, it’s for longer stretches of time. I do more each day. When I’m home, I don’t feel as bad. The GI symptoms are almost entirely gone, the pain is mostly stable and an acceptable (for me) level, my memory is better (but not great yet), the fatigue has improved so much, and I can recover from an afternoon out pretty quickly. It feels like a miracle! But it wasn’t a miracle, it was a lot of hard work and a bit of luck.

I think what helped me was a bit of an insurance doctor, a lot of my naturopath, and a huge amount of me.

The doctor that the disability insurance company made me see encouraged me to see a sleep doctor. I had been thinking about it, but he nudged me more in that direction. I did sleep studies and started using a cpap machine, and it made a huge difference. For the first time in ages I was waking up feeling slightly better than I had when I went to sleep!

My naturopath did a lot for me. I was already gluten free, but she got me off dairy and helped me figure out the other foods I should avoid. She got me on various supplements that have been helpful (and some that weren’t, but that’s ok – it’s all trial and error, right?) She got my vitamin D levels up, improved my zinc levels, and found a multivitamin that didn’t make me feel ill (something have had problems with for many years.) She tested my adrenals and got me on supplements to help them. She guided me through every step of the process.

The luck was that I had medical conditions that could be improved. Not everyone is so fortunate, and I am grateful every single day that I had options, even thought I had to work incredibly hard to find them.

And then there’s me. When I was barely functioning 3 years ago, and the doctors were all telling me there was nothing they could do, I decided to at least learn a bit more about my situation. I picked up a book at the library, and that led to more books, blogs, and online support groups. Reading was slow thanks to the brain fog and fatigue, but I eventually learned that my hypothyroid treatment wasn’t the only option, despite what my doctor had said. I did more research. I learned which kinds of doctors I should see. I made many phone calls. I learned about naturopathy and researched naturopaths, eventually choosing the one that I see now. I went on a gluten-free diet. Later, I stuck to the more restrictive diet that my naturopath recommended. It wasn’t easy, but I did it. More recently, I cut out all trace amounts of gluten, like from lotions and from kissing someone who’s eaten gluten. Again, it isn’t easy, but I’m doing it. I’ve swallowed more pills per day than I’d like to think about. I’ve stressed about the financial cost of it all. I’ve fought with insurance companies and with doctors. When a doctor I’d waited months to see was unexpectedly out of the office and I was given a substitute (who was useless, by the way) I complained to the head of the office and got an immediate appointment with the doctor I wanted (who was incredible!) I pushed myself to do more than I wanted to do. When a doctor didn’t want to give me the hypothyroid treatment I wanted, I found someone new (and the treatment change was a good move!) I found a new podiatrist when I felt my orthodics weren’t right, I restarted physical thearpy, and I learned about trigger points. As I felt better, I moved on to new lines of research. I followed up every lead from books I read and from patients I spoke to. I like to knit, and sometimes, as you’re knitting along, pulling at the yarn, you’ll encounter a knot, and it’s hard to untangle it. I’ve been untangling the knot of my health conditions for the last few years.

The main thing I did was I ignored all of the naysayers. The doctors told me I couldn’t get any better. Friends and family thought I should stick with “traditional” medicine. But I stuck at it. I didn’t do anything that didn’t seem to have some solid research behind it. I listened to patient experience, but I didn’t follow up on anything unless multiple people had had good results, and then I was still careful. And all along, I knew it might be for nothing. I knew the doctors might be right and I might not get any better, but I held out a glimmer of hope, too.

I won’t pretend I’m perfectly healthy now. Or that I ever will be. I know that my health conditions are permanent. The best I can hope for is to go into remission, and even that is a long shot. But I’m trying.

Because I could have given up. I could have accepted what the doctors told me. I would now be bedridden, with no hope of any improvement. That could still happen some day. I know that. But I’m focusing on one thing: today is not that day.

I’m not suggesting that my story is one that can be replicated. I’m not trying to be inspirational or any of that other bullshit. I’m not pushing anyone to do what I did if they don’t want to. I’m simply trying to answer the question I hear over and over from friends and from readers: “How did you manage to improve?” I’ll gladly give more details if anyone wants them, but for now I’ll just say, it was a bit of luck, a fair amount of searching for the right medical providers, and a whole lot of effort by me.

Leave a Comment » | Decisions, Educating, Expectations, Fatigue, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Tagged: | Permalink
Posted by chronicrants

What would it look like if healthcare worked the way I wanted it to?

January 19, 2015

I write a lot about all of the small things that I think are wrong with the system and the many small improvements I’d like to see. Those are all fine on a small scale, but what about the big picture? I decided to mentally design my own fictional healthcare system. For this my 500th (!!) post, I’m laying out just a few ideas for a system that I would 1-19-2015 5-44-01 PMactually want to be a part of. But I want your input to help make this fictional system even better! So please add your own ideas in the comments!

Now, I know that none if this is realistic right now politically, but wouldn’t it be nice if……?

To start, Ms. Rants’ Healthcare System (MRHS) is a system that would put the patient first. The goal would be to maintain health and prevent illness. Let’s say that again, because that’s a big fucking deal, and something that most of us don’t experience right now.

The system would put the patient first.

The goal would be to maintain health and prevent illness.

Oh my, I’m already light-headed with excitement! Ok, so we have our goal in place. Next up, let’s make sure everyone can access it, and I do mean everyone. Sure, someone has to pay for this, but I’m thinking there would either be a sliding scale or it would be paid for through taxes. But every person would have access to MRHS, regardless of income, assets, health, sexual orientation, gender identity, race, religion, citizenship status, etc.

And since we’re talking about access, that means that every office would have the following:

  • Accessible doors, chairs, bathrooms, examining tables, and everything else for all (including those who are able-bodied, in a wheelchair, overweight, blind, etc.)
  • Well-trained staff to understand and assist with the above.
  • Translators. The MRHS would have a staff of translators all over the world, all accessible via online video. When needed, translators would also be available in person whenever possible. All documents would be available in any language needed by the patient.
  • Medical personnel available for home visits for those patients who are unable to leave their homes.
  • Appointments in the morning, afternoon, and evening as well as weekend appointments. For the rare time the office is closed, patients can go to their local hospital for no charge.
  • Reserved appointment times for those who need last minute appointments not only for emergencies, but because they can not schedule in advance. For example, a retail worker may not know their work schedule until a few days in advance, so they need the flexibility to move appointments.

Of course, MRHS would also provide transportation to appointments for those who need it.

Now let’s talk about medical records. These would be electronic and available to every medical professional in every practice. I have spoken to programmer friends who work on these kinds of things so I know it’s not realistic right now, but this is my dream, and I’m choosing to dream about a world where this is possible. Right now, my Beth Israel hospital records can’t be read by my doctor at Brigham & Women’s Hospital unless I print them out and carry them with me. In MRHS, though, every doctor would use the same system. Everyone would be connected. But it wouldn’t only be the doctors who were connected: the patient would also be connected! The patient (or in the case of a child, the patient’s guardian) would approve each doctor who would see their record, and could rescind that permission at any time. The patient would also be able to make notes in their record, pointing out discrepancies between what they said/feel/experienced and what the doctor wrote. Of course, for this to work, every patient would need internet access and a computer, but of course in the MRHS dream that’s the reality, so that each patient can also participate in online support groups and do their own medical research. Training to use the computer would also be provided.

Of course, since each patient is being given the opportunity to be an active participant in their own care, the notes they add to their electronic record will be read and responded to in a timely manner. Patients can email every doctor, nurse, physician’s assistant, and other medical professional. Patients can also enter requests for certain tests and explain their reasoning as well as request changes in medications. Medical professionals will not receive any incentives or disincentives regarding tests or treatments, so all tests will be ordered unless there is a reason not to, and all treatments will be chosen based on their likelihood of success for the patient.

All tests and medications will be covered 100% by MRHS, of course. In addition, any over-the-counter item prescribed by a doctor will also be covered. For example, the multivitamins and vitamin D that my doctors now want me to take would be covered.

And it should go without saying that all accredited medical professionals will be covered. That includes doctors of all specialties, naturopaths, acupuncturists, chiropractors, and every other medical professional. If they’ve successfully completed their training, registered, and haven’t done anything really wrong, they’ll be covered. Simple.

Now, we haven’t touched yet on what it means for a medical professional to complete their training. You see, the MRHS has a different set of criteria for medical professionals than the current systems. Each medical professional will have to go through schooling and then follow up with continuing education, as they do now in many systems, but the content of that training will be different. Yes, they will be taught biology, etc. But first they will be taught to respect patients. They will consider a patient’s experience and intuition. They will learn not to dismiss a patient’s reported symptoms simply because they are unlikely or unusual. They will spend time overnight in hospitals, being treated as if they are ill, being taken care of and woken up for tests, etc. They will experience waiting rooms. They will go to offices and sit in waiting rooms, then report their symptoms to a strange person and see what they say. Nothing can replicate the pain, fear, and uncertainty that many patients face, but it’s a start.

They will focus not only on curing illness, but on maintaining health.

They will be trained to treat all patients equally, eliminating all racism, sexism, homophobia, biphobia, transphobia, anti-semitism, islamophobia…. and all other prejudices. They will be taught how to truly listen to patients. Medical professionals across specialties will team up when necessary. A rheumatologist, neurologist, and naturopath might all consult with one another about a particular patient or about a series of patients who seem to cross their specialties. Medical professionals will never lie to patients, even if they think it is in the patient’s “best interest.” They will offer patients all potential testing and treatment options and will guide but never decide for the patient. They will take their time with each patient and be sure the patient fully understands everything and that all questions are answered.

In short, they will learn to put the patient and the patient’s health first.

In the MRHS system, pharmaceutical companies will have no direct contact with medical professionals. Instead, a web site will be regularly updated. It will list every medication. New medications will be marked as new. It will include study results, including effectiveness and side effects. It will include comments by prescribers. When prescribers have questions about a medication, they will post their question to a message board on the site. Other prescribers will answer. Pharma reps can also answer, but their screen names will show they are pharma reps. There will be no more “conferences” for specific medications paid for by the pharma companies. Instead, medications will only be discussed at medical conferences. Pharma companies won’t attend these conferences. Prescribers will present on medications just like they present on medical equipment and other treatments, studies, observations of patients, etc. They will not be paid for this in cash, meals, or any other compensation.

I know this doesn’t cover everything, but isn’t it a fantastic beginning? I would love to be a patient in this system!

I realize that at some point my perspective changed. I started this article by writing about what “would” happen, and at some point “would” changed to “will.” Normally I would go back and change that so that it’s consistent, but I like it the way it is. Right now MRHS is a dream, but I’d like us all to start thinking about it as a potential reality. If we don’t dream big, it will never happen. I’d rather dream big.

Ok, your turn: what would you change about MRHS? What did I miss? Please add your thoughts in the comments! Let’s see just how great we can make this!

And on a side note, thanks so much for sticking with me. I can’t believe this is my 500th post! How did that happen?

6 Comments | Expectations, Frustration, Healthcare, Medication, Politics, Rants | Tagged: , , , | Permalink
Posted by chronicrants

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