A life of constant experiments

December 11, 2014

When your health changes constantly and you’re trying to improve it, sometimes there’s no way to know what will help versus what will make it worse other than to try. It can be difficult, frustrating, and exhausting to have to constantly try things out, knowing they could make you feel horrible, but what choice is there? Sometimes, all you can do is experiment.

A few years ago I hated the constant experimenting. I was nervous about each one, and so many either had no effect or made things worse. It was overwhelming to be constantly thinking about which experiment I was in and which I should do next and how to control the variables.

I’ve been noticing a big difference lately, as the number of experiments has gone down. There are still a whole lot to keep track of, but over all, it’s less stressful. I try to only do one at a time, so the shorter list means I no longer have a year-long list of them waiting. Still, I get nervous.

Last month, my experiment was to start walking almost daily. More recently it has been getting my new CPAP setup to work for me. That involved further experiments with different sleep schedules. Then last week, I took a short trip. I have 2 new supplements to try and 1 prescription to start. Walking seems to be working, as long as I don’t overdo it. The CPAP setup experiment is a partial success. There’s more to be done. The new sleep schedule is a success, though. The trip was mixed, but overall it showed me that I need to improve more before I travel again. I’ll start one of those new supplements this afternoon, then the other in about a week. The prescription will have to wait until I know where those supplements stand. Maybe they’ll make me really sick, maybe they’ll help me feel better. Maybe both. Maybe neither. And that’s the “experiment” part, because I just can’t be sure.

Having relatively few experiments to do right now is a relief, but it still isn’t easy. I have to constantly think about what I’m doing and about how I feel. Friends think I just take a pill and then wait and see. But it’s not so easy when I know that pill might make me feel really sick. Should I take it today, even though I’m going out this afternoon? And if it doesn’t agree with me, will it ruin my plans for the weekend? Or I could wait. I could put it off, like I’ve been doing for the past 2 weeks. But that doesn’t help anything, it only delays the inevitable.

And of course there’s the juggling act, as I try to figure out which experiments to run in which order. Friends think my doctor decides this but they don’t. I do. My current list of experiments spans 3 doctors, and that doesn’t include the travel. There’s no one person to turn to. Besides, no one knows my body better than I do.

I feel like my own guinea pig. I don’t like it, but it works. Trying new things is the only way to feel better, either for a minute or in the long term. So that’s why I push myself. And that’s why I’ll risk ruining both my afternoon plans and my weekend plans by trying a new multivitamin today. Because despite the problems, it’s worth it if it works. I only hope it works.

6 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

What’s your diagnosis?

December 5, 2014

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?

4 Comments | Educating, Frustration, Isolation, Rants, Symptoms | Tagged: , , , , , , , , | Permalink
Posted by chronicrants

Where’s my apology?

November 29, 2014

Apologies are powerful. They convey regret and an acceptance of responsibility. They are also hard to come by, especially, in my own experience, with doctors.

Over the years I have seen many doctors. Some have treated me well. Others did not. Some were dismissive, some were ignorant. I was told I was just trying to get attention or that I was imagining my symptoms. I was given misdiagnoses. I was dismissed. I was given unnecessary surgery, surgery that could have been avoided completely if the doctor hadn’t ignored some test results.

I received prescriptions, judgments, proclamations, criticism, and referrals. What I never got was an apology.

A simple example: I asked my doctor to run a test for something specific. He insisted on running a less expensive test. When I got home, I researched and saw that the test he ran was inaccurate for the problem I suspected. It came back negative. I paid out of pocket to have the test run myself and it came back positive. He accepted my test results but never admitted that he should have run the test in the first place. Where’s my apology? I spent my own money, did my own research, and spent many hours fretting over this. He could have just ordered the test, but didn’t.

And then there’s that doctor who did the unnecessary surgery. Where’s my apology from him? That was many years ago, but I’m still resentful that he was so pompous about the whole thing, insisted that it was still informative. I read the records. It gave no new information, but it did succeed in increasing my pain, weakness, and instability in that joint. He never apologized.

I know the medical field is wrought with lawsuits that cost doctors a lot of money and their reputations. So they need to be careful.

But we’re human beings, damn it! Patients are not just puzzles that, when you make a mistake, can be taken apart and put back together again. And if you break a piece, you can’t just throw out the whole box. And yet, that’s often how I feel I’m being treated.

I’m not looking for a 20 minute speech for each and every misstep. But when someone clearly makes a mistake that causes harm to another human being, the appropriate thing is to apologize. This is no less true for doctors. They should learn in medical school that saying, “I’m sorry” for their mistakes isn’t a mistake and it isn’t a weakness. Personally, it would make me respect them a whole lot more.

3 Comments | Expectations, Frustration, Healthcare, Insensitive, Rants | Tagged: , , | Permalink
Posted by chronicrants

Sharing too much and not enough

November 19, 2014

I get tired of answering the same questions about my health and insurance woes from my family and friends all time, and they feel awkward about constantly asking. It would easy to just have them follow this blog, but I’m keep this blog anonymous, and only a select few know about it. So I send emails.

I don’t send too many emails, and the last one was several months ago. I always find it tricky. I want to include enough information to answer everyone’s questions, but not so much that the email is cumbersome to read. I want to cover everything, without overwhelming anyone. I want to share enough, but not too much.

There’s no guideline for this. There are online tutorials for writing the perfect business-related email. There are tips on writing difficult emails to a friend. But I’ve never heard anyone mention a group email to update friends on a chronic health condition. I try to keep the tone light, but informative. It’s serious, but not too heavy. I only started this a couple years ago, and most of the earlier updates were insurance-related, so it was easy to make fun of the system. It’s harder to make jokes when I’m writing about my health.

And then there’s the audience to consider. Close relatives and less close friends and everyone in between are all on the list. They’re all people with whom I feel comfortable sharing this info, so privacy isn’t a concern, but their knowledge is. The people who I’m closer to know a lot more about my health conditions in general and often the specifics that I’m dealing with at any given time. A good friend who I speak to less often won’t know these things. I know I need to include enough details for the latter to understand, but I don’t want to bore the former.

Now let’s say I find a balance for all of that. There’s still the issue of my own shyness around this stuff. I’m happy to answer questions, but feels so self-centered of me to send out these emails, as if everyone wants to know this stuff. I know that’s irrational. I know that they want to know – most of them get this email because they asked to be kept in the loop. I guess I’ve just never been good at being the center of attention for any reason.

I’ve been meaning to write this latest email for over a month. I’ve thought about it from time to time, but I just never got around to it. Today’s the day. I’m going to write it right now. I just wish I knew what I was going to say.

4 Comments | Educating, Frustration, Rants, Support, Symptoms | Tagged: , | Permalink
Posted by chronicrants

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