Orbiting the doctor planets

February 22, 2014

“Can’t you just take a pill”?

“Yeah, right.”

We all hear this. But for me, there’s no cure. The best I can hope for is a combination of treatments that might help. I’ve made a lot of dietary changes. Thankfully, I can do those on my own. I’m also fortunate to be able to research medications and supplements. If I just listened to my old doctors, I’d be much worse off. Instead, I’ve seen a lot of improvement. Unfortunately, I still have a long way to go.

Because of my research, I know what I want to try next. I just don’t know how to get it. Sound familiar? Figuring out what to try was hard enough, but this is even more frustrating. I want to try adding another medication to my current one. It’s a very common combination in some areas, but unfortunately not a lot of doctors around here do it. Actually, that’s not true. Plenty do it, but they don’t take insurance and they cost a lot of money. The doctors that take insurance instead tend to prescribe med X, which is more profitable to the pharmaceutical companies. They buy into the hype from the pharma reps, and that’s all they offer. It took me ages to get med A, and now I’m stuck trying to get med B.

Dr. P prescribes med A a lot, actually. I was lucky to find him. Unfortunately, he doesn’t usually work with med B and he hasn’t been returning my emails. Dr. D could potentially be helpful with this, but he hasn’t returned my last three phone calls about a different, simpler matter, so I can’t really trust him with this. Dr. H works with med B a bit, and has been willing to prescribe it in the past. Unfortunately, he doesn’t believe in med A, and would want to combine med B with that with med X, which I’d rather avoid. I was on med X for 9 years and was very sick. I don’t want to go back. Dr. S thinks I should try something else first, but she understands my reasoning for this, and is willing to support me. Unfortunately, in Massachusetts naturopaths aren’t allowed to prescribe medications, so her support only goes so far.

I’m so lucky to have this many medical professionals to turn to, and yet none of them are able to help me! I can’t see spending thousands of dollars per year for a doctor who isn’t covered by insurance, but I’m feeling like I’m running out of options. The doctors all seem to be clustered together and I’m circling them, unable to find a way to make contact and have a reasonable conversation where we all speak the same language.

My friends try to listen sympathetically when I talk about this bullshit, but the truth is that they don’t really understand, and I don’t blame them. After all, who could possible understand such an absurd system if they don’t have to deal with it directly? I wouldn’t either. But in my current situation, I have no choice. So I’ll spend the weekend feeling annoyed and pissed off and frustrated, and on Monday I’ll go back to making phone calls and trying to get in touch with these moving planets that I’m forced to deal with. Grrr.

15 Comments | Decisions, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

Explaining why I don’t work to potential dates

February 15, 2014

I’m a pretty open person when it comes to the health-related crap I have to deal with. There are some things I don’t like to share, but not many. I’ll share about 98% of what I deal with when I talk to family and friends. Acquaintances hear a lot. I’m even pretty open with strangers. Until, that is, the topic of jobs comes up.

Last night was Valentine’s Day, so I did what so many singles do – I went to a singles party. This was a much better party than most, which is why I went. It had awesome people, it wasn’t in a club, there was some background music but it wasn’t too loud, and the entire point of the night was to have actual conversations with people and then exchange phone numbers/email with people you’re interested in. I’d gone once before, and this time was even better. I pushed my body hard and was thoroughly exhausted when I got home, but I felt it was worth it.

Aside from the aches and pains and exhaustion of standing so much, there was just one problem: the question, “What do you do?” This isn’t a very common question in some cultures. In Boston, it’s one of the first things people ask. They use it to define you, to learn more about you. It makes some sense, since people spend so many hours working. The problem is, how can I answer it? In general I’ll gladly tell someone that I’m not working because of health issues, but not if I think I might want to date them. I don’t want to scare them off yet!

I spent the night saying, “I’m not working right now.” But then the next question was always to ask what field I work in, and so many people asked if I’m looking for work, or what I’m looking for. I’ll be evasive, but I won’t lie, so that was a lot harder. I usually said I’m considering my options, which is true. I’ve been giving a lot of thought to what kinds of work I could do when/if I’m able to work again, even part time. But I just know that on any first date, the subject will come up again, and what then?

In the long run, whoever I end up with will have to be ok with my health issues and my inability to work, at least right now. The issue is that I want to introduce the topic slowly, and on my own terms. I want them to get to know the parts of me that aren’t controlled by my health problems, and that’s hard to do if health problems are the first thing they learn about it.

It feels like I’m trying to navigate a minefield. So I’m going slowly, one step at a time. I don’t know what I’m doing, but I’m hoping that maybe, one of these days, I’ll figure it out. In the meantime, if you have any suggestions, I’d love to hear them in the comments.

7 Comments | Educating, Expectations, Frustration, Job, Limitations, Rants, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Looking so hard for a good treatment path

February 9, 2014

At first I titled this: “Looking so hard for the right treatment path” but I’m not so sure there’s just one right path. And even if there is, I might not be ready for it; I might need to take a bunch of small steps before I’m ready for a bigger one.

Sometimes there are fairly clear treatment options. If you break a leg, you probably need to get it set in a cast. If you have an infection, you’ll probably take antibiotics. If you’re allergic to peanuts, you won’t eat peanuts. But sometimes it’s not so straightfoward.

I’ve written before (and also here and here) about having trouble choosing treatment methods. This is definitely not a new problem for me! But once again I find my path blocked and I’m not sure which way to turn.

I could turn in the direction of medication changes. I could switch to a different brand of my current thyroid med, change the dose of the current med, or switch to a synthetic version of the med.

I could turn in the direction of supplements. A lot of hypothyroid patients swear by the efficacy of iodine. But just as many others say it made them worse. Or maybe there’s a different supplement I should try.

I could turn in the direction of dietary changes. A lot of autoimmune patients say that the Paleo diet helped them put their illness into remission.

I could turn in the direction of other specialties. Maybe I’ve done as much as I can for my thyroid at this point, and instead I should be focusing on other areas.

I could turn in any one of those directions, but I can’t be sure which is best. The doctors disagree. None of the treatments I want to try are “traditional” methods, at least not these days. The literature in inconsistent. Every patient swears by one method while another swears against it. I know that I should only try one thing at a time, but where should I begin?

It’s frustrating, so frustrating, to feel lousy and not know what to do about it. I feel like a broken record, but that’s just what I’m dealing with again and again and again.

The good news is that I will try something. It might work or it might not work, but at least I’m going to take action. For me, that’s better than being passive, at least. I just hope I don’t make things worse. I guess that’s why I research everything so carefully. Now, to figure out what to try next….

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

How many chances should I give a “good” doctor?

February 7, 2014

Finding a good PCP* (primary care physician) is really hard. I need to find someone who is open-minded and respectful. They must consider my opinions and be willing to read the research I bring in. They must not dismiss my symptoms as unimportant. They must be willing to give me referrals to the doctors who are most likely to help my health, not just the ones their hospitals get the most money for. You’d think this would be the bare minimum to expect of any doctor but, sadly, that’s not the case. At least, that hasn’t been the case in my experience.

Last fall I thought I’d finally found the one. He seemed to meet my basic requirements and then some. I liked him a lot. We only had a get-to-know-you introduction meeting, but I liked him enough after that to think I could stop searching.

I hadn’t had my old PCP’s records sent over before my visit, just in case it didn’t work out. Why go to that bother for no reason, right? So after the appointment I had them sent. Also, after the appointment, thanks to a new system, I could see his notes online! This was awesome! Unfortunately, there were some mistakes. I might have let them go, but since I knew the Social Security Administration and also the private long term disability insurance would be requesting them to evaluate my condition, I wanted to make sure they were as accurate as possible. So I wrote a letter full of corrections that I wanted made and/or added to my file. Then at the beginning of January, I called and left a message to make sure the old records were received and my letter of corrections had been addressed. I didn’t hear back.

Three weeks later I called again. I was told it was very unusual that he wouldn’t have called back. I left another message. She said that she would mark it urgent so that I’d hear back right away.

That was two weeks ago.

I called today and left another message. I made it clear that I was getting ready to look for a new doctor. The receptionist stressed that this never happens, that he always calls back. Regardless, he hasn’t called me back. I’m feeling so torn. I really like this guy. Medically, I think this is the way to go. But if he can’t return calls, even if the matter isn’t urgent, then what good is he? What happens if the disability insurance company asks him to fill out a form and he never does it? What happens if I call about something that really is important? Then what?

I think this will be the last chance. Today is Friday, and the office is closed over the weekend. But if I don’t hear from him next week, then I’ll have to look for a new doctor. I hate to do that. I liked this guy, I really really liked him. And looking for doctors sucks. But my health is too important to take these chances. I just hope that this time he calls.

*For those not familiar with HMOs, the PCP is the gateway doctor. Insurance will not pay for any specialists unless I have a referral from a PCP, so it’s vitally important that I get someone fantastic.

6 Comments | Decisions, Expectations, Frustration, Healthcare, Rants | Permalink
Posted by chronicrants

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