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

Some things I wish were covered by health insurance

January 28, 2014

I look at the many, many medical thing I pay for that aren’t covered by insurance, and I wonder why they aren’t covered. I would think that most of these would be cost-effective for the insurance company. I won’t go into the financial aspects now, but I just want to mention a few of the things that I think should be covered. Please add your own in the comments!

  • Supplements. If prescription medications are covered with a copay, why aren’t supplements? My doctors all want me to take multivitamins, vitamin D, calcium, and others. They tell me to. Yet the supplements aren’t covered.
  • Massage therapy. Ok, I found out yesterday that it’s covered, but only if I get a prescription for physical therapy, find a physical therapist who does massage therapy, and get it billed as a physical therapy session. And it counts as part of my physical therapy sessions for the year, which aren’t unlimited, so that means I’ll get fewer other physical therapy sessions. But I think it’s necessary. It’s expensive, so I only do it 1-2 times per year, even though my doctors and physical therapists say I should do it 1-2 times per month. A few days ago, my neck hurt so much that I could barely turn my head. After today’s massage therapy, I feel so much better. I can turn my head again!
  • Acupuncture. This has been one of only two things that has ever helped my chronic pain, and yet it’s not covered! I can go to a pain clinic under insurance, even though it won’t help, but they won’t pay for acupuncture treatments.
  • Marijuana. In fairness, medical marijuana is new in my state, but I still doubt insurance will cover it any time soon. They pay for all sorts of painkillers that have lousy side effects and that don’t do much to help me, but they don’t pay for marijuana, which is the only thing besides acupuncture that helps the pain. I don’t use it often, but when I need it, I want to have it handy, without worrying about the ability to pay for it.
  • Orthodics. My insurance covers a visit to the podiatrist and it covers physical therapy. But for some odd reason it does not cover my orthodics, even though they are completely necessary to prevent all sorts of problems. I am completely lost as to why they aren’t covered.
  • More mental health visits. I get so few, it doesn’t even seem worth going. I’d run out just as the doctor was starting to know me, and I wouldn’t be able to pay out of pocket, so why bother? So I’m missing out on useful treatments because of inadequate coverage.
  • Naturopaths. I can’t really blame the insurance company here, but I still wish naturopaths were covered, like they are in other states and in other countries. Unfortunately, the state of Massachusetts won’t license naturopaths, despite all of the good they can do, so insurance doesn’t cover them. That means that I have to pay out of pocket, even though my naturopath has been more helpful than the 10 previous doctors I had seen, combined.
  • Various tests. There are many very valid tests that aren’t covered by insurance. Some are used in medical research. For certain things, they are more accurate than the covered blood tests. The insurance company will cover the inaccurate blood test, but not the saliva test or urine test that’s more accurate. Lovely.

Those are a few of the things I wish my health insurance covered. I know I’m lucky. I have one of the best health insurance plans in the state, and access to pretty decent care. Still, after rent well over half of my spending is for medical care, and that’s even with health insurance. So yeah, I wish this other stuff was covered. What about you? What do you wish was covered by your health insurance?

1 Comment | Expectations, Frustration, Healthcare, Limitations, Medication, Pain, Politics, Rants, Support, Symptoms | Permalink
Posted by chronicrants

How chicken ruined my laundry plan

January 22, 2014

The plan was simple: breakfast then rest then laundry then lunch then more laundry then more rest. I’d scheduled today for laundry several days ago. I was ready. I was desperate. I was running out of clean, comfortable underwear.

It started out ok. I ate breakfast, and rested, but then I was really cold so I took a hot shower, so I had to rest some more. I was starting to get the clothes ready, but then I remembered that I meant to get dinner started in the crockpot. I set aside 20140102_214125the laundry prep and headed to the kitchen. This is the easiest way for me to “cook.” I just throw some ingredients in the crockpot and then leave it for 6 hours or so. But as I was getting it ready, I realized what the odd smell in my kitchen had been – the chicken was no good.

Crap. Now what? I had two issues: I couldn’t make dinner and I had smelly, expensive chicken in my kitchen. The first wasn’t too bad. I had other food, so I didn’t mind waiting. But I needed to return that chicken. It was too expensive to throw out, and I didn’t want it smelling up my kitchen. I was too tired now for laundry, so I figured I’d do that after lunch, then return the chicken. But that was no good. What if I was too tired to leave the house? Better to do the thing that meant leaving the house, I decided, and do the indoor chore after. So I returned the chicken.

Once I got to the store it was quick and easy. I bought new chicken breasts that I can put in the crockpot tomorrow. No worries. I needed to stop at another store while I was out, but I was just too tired. I’d been pretty active the last 4 days, and 4 consecutive days of leaving the house is my limit. Often I can’t even manage 4. Today was #5. Oh boy. So I skipped that second errand.

And now it’s almost 4pm. My neighbors will be coming home in the next couple of hours, which means I’ll have more competition for the washing machines and dryers. My brain is saying I should just do the laundry and get it overwith, but my body is just So. Damn. Tired. I’m still hoping to do laundry later today but first, I think I’ll go lay on the couch and watch some tv. It’s not my first choice. In fact, if I’m not going to do laundry then I’d rather read my book, make some phone calls, work on an article I was asked to write for a newsletter, or even play solitaire. But I’m just too tired, so I’ll be resting on the couch. And if I can’t do laundry today, then tomorrow I’ll just have to wear the too-small underwear that rides up my butt. So be it.

I blame the chicken.

Note: If you’re tempted to suggest I use a laundry service, read this.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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