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

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

Dreams of winning the hypothetical medical lottery

December 13, 2013

I keep reading and hearing about the big $400 million lottery jackpot. I thought for a minute about what I’d do if I won (unlikely, since I didn’t buy a ticket) and I was surprised by what came to mind.

I used to dream about winning. I figured I’d quit my job, buy a house, travel with friends, get a couple of dogs, and support20120809_220808 charities. Those were the first things that came to mind. Those are all still on my mind, but now something else comes to me first: doing all the health stuff I feel I can’t afford to do right now.

Money doesn’t solve everything, but it sure could help! I wrote about this 2 years ago but life was so different then. And back then, I didn’t know what was causing my health problems. If I had that money now, I’d immediate see the doctors who don’t take insurance, run all the lab tests that the insurance companies don’t want to cover but that I know I need, and take the extra supplements I’ve been avoiding. That’s already thousands of dollars every year. Then I’d go back to physical therapy and start getting therapeutic massage every week. I would pay to see a doctor for a medical marijuana prescription and buy a high-end vaporizer to help with the chronic pain. I would get a dog, which would do wonders for my emotional health (and I could then afford a dog walker for the days I needed someone, which would be most days.) I could get a home with central air conditioning so I wouldn’t feel as horrible all summer long. Of course, I wouldn’t have the stress of worrying about my future finances, and that would really help with my cortisol levels. I would update both my eyeglasses and my orthodics more often. And of course there’d be things like buying only organic produce.

This flashed before my eyes in an instant, and then it was gone. I didn’t win the lottery. I need to save the money I have in case my benefits are pulled away, which could easily happen any time. And I don’t have enough money to make all of that happen anyway.

It’s sad but true: good health costs money. I’m lucky to be doing as well as I am, to be honest. I’m thankful for a safe home, good health insurance, and a supportive family. But $400 million might not be so bad to add to that.

6 Comments | Expectations, Frustration, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Why don’t I cry?

November 25, 2013

Sometimes I wonder why I don’t cry more about my health situation. I certainly have good reason to. Sometimes I want to, but I don’t. And I wonder why.

I just emailed a bunch of loved ones to let them know that my new, long-awaited treatment isn’t working. I thought about the many options I can try out next. I thought about the months and months of trial and error, of hope and despair, of improvements and horrible side effects, that now await me. I thought about it all, and I wondered why I wasn’t more upset.

Right now I am wrapped in a blanket. My hands are so cold that it’s hard to type. Yep, we’re getting some early winter weather here in New England. I want to take a hot shower to try and warm up, but I’m too tired to manage it. Should I want to cry?

I’m sure that part of my lack of crying is my positive attitude. I’m cold, but at least I have shelter, warm clothes, and the ability to get warmer if I have to (I can drive to a friend’s house, complain to the landlord about the lack of heat, etc.) My treatment isn’t working right now, and trying others could be tough, but at least I have options. That’s a hell of a lot more than what I had two years ago. Or even 1 year ago. Or even earlier in 2013. Overall, life isn’t that bad.

Then again, it isn’t all that good, either. My life is tough. Sometimes it really sucks. I want to date and have a job and play sports or even just take a long walk. Yeah, it sucks. But a long time ago I promised myself that I wouldn’t constantly get upset and cry over it. The thing is, I made that promise to myself about 20 years ago when I was a kid. I had always been a crier, and I didn’t want to be considered a cry-baby. Also, I was trying to prove to myself that I was stronger than my pain. That made sense back then. I occasionally cried over the pain, just like I occasionally cry now when it’s really bad. But the thing is, I still only cry when it’s really horribly extremely bad, and maybe there are other times when a release of emotion would be good for me. My health situation is much worse and much more complicated than it was 20 years ago. Back then, it was sporadic pain. Now it’s constant pain, fatigue, digestive problems, and more. Back then it didn’t stop me from doing anything other than certain sports. Now, it stops me from participating in so many important facets of my life. So why don’t I cry more often?

I don’t know what the answer to that question is. Maybe one day I’ll figure it out. Maybe I won’t. Right now I don’t think it’s important enough to worry about it actively, but I like to be self-aware, so I’ll keep it in the back of my mind and maybe the answer will come to me. In the meantime, I’m not in denial and I’m not suppressing my emotions. I know all too well what my situation is and I’m facing it head-on. And that feels good.

Plus, I have this blog as an outlet. I can’t believe I’ve written almost 400 posts now. I’ve found writing it to be very cathartic and the readers to be very supportive. So thank you all.

I admit it, I don’t have an answer. I don’t know why I don’t cry more. And right now, that’s ok.

4 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Pain, Support, Symptoms | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »