On not noticing the pain

March 2, 2015

The point of pain is to make you aware that something is wrong with your body. At least, that’s supposed to be how it works. Unfortunately, for some of us that system is malfunctioning.

In theory, you feel pain, you pay attention to it, you try to fix the source of it. But when your pain is constant, that’s not how it works.

My pain started more than 22 years ago. I’d have it for days, weeks, or months at a time. It would randomly go away, only to return at some unexpected time. Then about 19 years ago, it changed: it got worse and it became a 24/7 presence in my life.

Most people would expect me to have been thinking about my pain every day then and now. And in a way I did and do, but not in a focused or conscious way.

After all these years, I know what movements and actions will trigger pain and I avoid those. If I absolutely had to pick up something heavy or move in certain ways, I literally wouldn’t know how to do those things now. It’s been so many years, that I don’t remember how. Like riding a bike. I stopped riding a bike due to the pain and I’m pretty sure that if I tried now, despite the well-known saying, I’d fall over (at least in part because my center of gravity has shifted quite a bit since I was 16.) So I suppose that in avoiding those triggering actions the pain is on my mind, but only in the background.

These days, I only pay attention to the pain in two situations:

  1. When it spikes. I can’t ignore those sudden increases.
  2. When it’s consistently severe. I can ignore pain up to a 6 on my pain scale (with a range of 1-10) fairly well, and a 7 if I need to, but above that I can’t ignore it. When it hits 8.5 I start considering taking pain meds, even though they have side effects that I hate.

So what about the rest of the time? Well, I notice it sometimes, but it doesn’t take up a lot of room in my brain. Other times I forget that I’m even in pain. When the doctor asks if I’m in pain, I sometimes have to stop and take inventory of my body. Because otherwise I’m not sure. Other times I’m in a lot of pain and it’s obvious even to me.

I’m not saying it’s easy to ignore pain or even that it’s natural. For me, it was a matter of self-preservation. When I was 17 I reached a point of exhaustion and I just had to learn to sleep through the pain. There was no other way to function. So first I began to sleep through the pain, then I pushed it farther and farther back in my mind as it became my new normal. And there were other things on my mind. I was applying to colleges, going out with friends, dating for the first time, fighting with my sister, thinking my parents were unfair (hey, give me a break, I was a teenager!) and spending many hours on homework. I had, you know, a life.

In other words, there was more to my life than just the pain.

Even now, when my life is more taken up by my health problems than it was in those early days and I can’t work at a job, I have non-health things going on, too. I date a bit, I spend time with friends, I volunteer. And, yes, I take care of my health constantly. In an odd way, that’s also a distraction from the pain.

So now, like then, sometimes I’m too busy to think about the pain. Sure, a 5 on the pain scale would upset most people. And I admit, if I suddenly feel a 5 in a new place, I can’t ignore it. But if I feel a 5 in an area where I’ve had daily pain for years then sure, it might not get my full attention. A part of my brain picks up on the pain signals, decides it’s not worth addressing, and relegates it to the back row of my attention theater.

A little while ago, in the middle of typing an earlier paragraph, the pain got bad enough that I could no longer sit up in a chair. I noticed the pain. I had been ignoring it for most of the last week and my body finally gave me some clues that if I kept ignoring it, I’d be paying a steep price later. And that’s why I’m now typing to you from my couch. But while I was busy continuing this post, I forgot about the pain completely. I wasn’t aware that I was even in any pain at all. Now that I think about it, yes, it’s still there. It’s significantly better than it was when I was in the chair. No doubt that it’s better. But it’s there. And if I wasn’t so used to it I’d probably be worried that something was wrong with my body.

But I know better than that. And that’s why I’ll keep going about my day, doing as much as I can so I can cross things off my “to do” list for the day, and only noticing the pain if it gets worse again. Until then, it won’t even cross my mind.

And if it does, I’ll shove it away.

6 Comments | Expectations, Frustration, Limitations, Medication, Pain, Symptoms, Unpredictable | 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

Dear doctor: Those symptoms you ignored were signs of a real problem

January 7, 2015

I don’t expect every doctor to know everything there is to know about medicine and health. I don’t even expect them to know everything there is to know in their own specialty. But when I present the same symptom to many doctors, and it’s common enough to be written on one of those silly internet lists, shouldn’t at least ONE DOCTOR have known what was going on??? Or at the very least, they shouldn’t have brushed it off!

Back in my mid-20s my fingernails began to curve. Before that they were pretty typical nails, I think. Then suddenly, they curved downwards as they got longer. The first and middle fingers were the worst on each hand. I just cut them recently so I can’t take a photo today, but trust me on this; it was really noticeable.

I didn’t assume there was a major, life altering problem, but it definitely wasn’t normal, so I showed my doctor. He brushed it off, saying it was nothing. I showed my next doctor after him. Same response. I showed many doctors, both internists and specialists. Some said it was nothing. Others weren’t sure, but said I shouldn’t worry. Not a single one suggested that maybe it should be investigated. A friend said it could be a vitamin deficiency of some sort. My doctor didn’t agree. So what could I do about it? Looking things up online wasn’t so easy just a few short years ago, and I had bigger health problems to worry about.

I came across this short list, What Your Hands Can Reveal About Your Health, a few months ago, and I haven’t been able to forget about it. That’s because it was so clear about this problem that none of my doctors addressed:

Curved nails

Soft nails that curve likes spoons can be a sign of iron-deficiency anemia, says Dr.Leffell. The condition, called koilonychias, can be due to such malnutrition, gastrointestinal blood loss, worms, gastrointestinal malignancy, or celiac disease. See your internist who can check your iron levels.

Now, obviously my doctors screwed up in other ways. I had low ferritin levels for many years, but none of my doctors addressed it. It wasn’t until I sent myself to a hematologist that I finally received the iron infusions that got my levels up to where they should be. And I had symptoms of Celiac Disease for many years, but doctors kept telling me it was IBS, or IBS and reflux, or IBS and stress. Nothing improved until I put myself on a gluten-free diet. So really, the finger nails were just one more symptom that was ignored.

But why were they ignored?

I will never know why multiple doctors chose to brush off my concerns about very real symptoms of very real illnesses. I’ll never know if other patients were similarly dismissed. But I do know that an injustice was done.

I am so grateful that I took my health into my own hands. It’s not easy, and sometimes I forget to fight back, but I’m trying. And every time I come across another symptom that my doctors overlooked or brushed off, it’s a reminder that it is worth every bit of effort I expend to continue pursuing the treatments that I believe are best. From now on, I choose to see my curved fingernails as a reminder that I need to make my own decisions about what is relevant to my health. I won’t be brushed off again.

6 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Medication, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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