Life with chronic illness: a bigger suitcase

March 17, 2014

It used to be that when I was going to spend the night someplace, I’d quickly throw some things in a bag and head out the door. Toiletries, change of clothes, a book… I didn’t need much.

Then I started having to add pills. Lots of pills. And a sunlamp. And I still had the clothes, toiletries and book, of course.It 20131202_162116took longer to pack. And I needed a bigger bag.

When I went gluten-free, I had to bring food with me. Leftovers for lunch and dinner. A container of gluten-free oatmeal for lunch. Snacks. Oh, and all of the pills, clothes, toiletries, and a book. And an extra bag and a cooler

Now I’ll be adding something new to the list: a CPAP machine. If it works it’ll be worth it. But it’s heavy. And in addition to the CPAP I still have to bring the food and the pills and the clothes, toiletries, book. Now in addition to the cooler and bag of food, I’ll need a rolling suitcase. For one night. What happens when I go away for longer.

This isn’t the end of the world, but it illustrates my point. Life is hard for everyone. We all worry about our family, our friends, money, jobs, etc. But having a chronic illness means more thinking, more planning, more effort. It means not being able to just throw clothes in a bag and run out the door. It means thinking everything through very carefully. It means considering every angle, every possible outcome, before making a decision.

It means packing a bigger suitcase.


The big medical marijuana problem: paying for it

February 26, 2014

I was going to write about some events that happened yesterday but I’m still too upset, so those will have to wait. Instead, let’s travel back in time to Monday.

As I wrote then, I had a lot to do on Monday, and most of it was health-related. A big item on my list was to make an appointment to get a prescription for medical marijuana. As it turns out, it’s called a certification, not a prescription, but that’s just one of the things I learned.

I had been putting this off. I kept hoping that if one of my new meds worked, then I wouldn’t need medical marijuana for pain very often, or maybe not at all. But it’s been months and the meds haven’t worked. If anything, some of my symptoms have even gotten worse lately. After a horrible bout of pain and nausea the other night, which was only helped by the marijuana I happened to have already, I’d had enough. I finally decided it was worth getting the certification. I won’t use it often, so I considered just buying it off the street, but even from a trusted source, I couldn’t be sure what I’d get. Besides, some strains are better for the treatment of chronic pain, and I’d need to go to a proper provider for that. I got the names of doctors who will write the certification from friends, and was told it would be $200. Oy! And keep in mind, that’s $200 for the certification. I’d still have to buy the marijuana, the vaporizer, and everything else. But what can I do? And I’m already spending so much money on healthcare that isn’t covered by insurance, so what’s a bit more, right?

You might be wondering why it’s so expensive. I’m no expert, but here’s my understanding:

  • Any doctor is allowed to give the certification by law, but most medical centers aren’t comfortable with it and don’t allow their doctors to do it. Also, most doctors don’t have the experience with medical marijuana to make them qualified. After all this isn’t taught in medical schools.
  • The doctors that offer the certifications don’t take health insurance. I’m not sure if this is their choice or the insurance companies’ choice. I’m guessing it’s both.
  • Massachusetts is being very slow to set up medical marijuana dispensaries. They were approved by ballot in November 2012 and we don’t have them yet. In theory, they should be running later this year. That means most people aren’t using medical marijuana yet. So there aren’t as many doctors to offer certifications yet. That lack of competition means that prices can still be high.

So on Monday I picked up the phone to make my calls, and I wasn’t please. One friend told me the place she went was sketchy, and it sounded that way to me, too. That one was $200 for a 1-year certification. The other place seemed more professional and was $250 for the initial visits, with required follow-up visits for recertification every 6 months at a rate of $100 each. I found another online that seems great. That’s $250 for the initial visit and $200 for the recertifications every 6 months. And again, this isn’t for the marijuana, just for the certification so that I can legally buy it.

Those are the numbers, and they really suck. Being sick is expensive. We all know that. But it amazes me just how much of my medical care and treatment isn’t covered by health insurance. This is just one more example. So now I need to decide, should I go to the sketchy place for $200 for the first year, or a more legitimate place for $350-400 for the first year? What lousy choices.


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.


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….