Needing a change

September 21, 2016

I’m in a rut. I guess that’s to be expected since:

  1. My health limits what I can do.
  2. I’m totally a creature of habit.

Still, it’s bugging me. A lot. I used to travel all the time. It was rare that I was in my town for more than 2 months at a time. I’d go away for weekends, or long weekends, or week-long trips. I traveled locally, across the country, and abroad. And I miss it.

I did other stuff too, but travel was a great way to break out of the work-home-work-home-work-home-socialize-work routine.

So now I’m wondering about traveling again. I’ve written about it before, but this time I think maybe I should try it. I don’t feel quite ready, but I have a feeling that I never will.

I’m trying to decide where to go. My first choice is Sweden. I was planning a trip there when I became ill, and I’ve always wanted to follow through on that. With any luck I could use my frequent flyer miles and at least cover the airfare.

Or I could visit a friend in the U.S. That would be a lot easier and definitely less expensive. The problem is that the people I most want to see are in places I don’t particularly want to go. Either I don’t have any interest or, more often, I’ve already been there so many times. I’d rather go someplace new and different. After all, the point is to make a change, right?

I’m going to make other changes, too. I hope to move in the near future (I’ll let you know when that gets worked out.) And after that I’m going to try getting a dog again, and this time I’m hoping it works out better. But then what? I need to do something else. And I don’t know what it will be.

I want to get out and meet new people! But I’m an introvert, and going to events full of strangers feels unpleasant and exhausting. Plus, they’re so often in the evenings, and by then I’m not really up to going out. Or they’re on weekends and involve things I can’t/don’t want to do like kayaking, eating out, hiking, etc.

I need to find the right group of people to hang out with. And start doing new things. I need to get out of my comfort zone.

What do you do to get out of your comfort zone? Do you travel? Where do you go? Do you meet new people? If so, how? Please comment and give me some ideas!

4 Comments | Decisions, Fatigue, Frustration, Isolation, Medication, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

Getting good doctors isn’t about luck

July 16, 2016

I lied. It’s a little about luck. But mostly it isn’t. Mostly it’s about research and persistence and organization and all sorts of other things.

I have some really great doctors. I feel so lucky to have them. My friends with chronic illnesses say I’m lucky to have them. But the truth is, luck had little to do with it.

I’ve worked damn hard to get this line-up of doctors on my side, and I had to go through a lot of shitty doctors over the years.

First I spent years in a system where I could only see doctors within that group. Twice I got referred to specialists outside that group because they didn’t have anyone to help me, but each time I only saw that specialist once. And in hindsight, I realize that those specialists had really been on to something each time. Damn. My diagnoses got delayed for many years because I played by the rules and stayed in that group.

Then I moved, and I didn’t live anywhere near that group. Since I was a student (in graduate school) I was able to stay on my parents’ insurance, and since I was out of state I was allowed to see another doctor and insurance would reimburse me. I decided to use this to my advantage. It was a conscious decision.

Back then I thought that the pain was my only treatable symptom, so I went on a national arthritis group’s web site and saw that they mentioned rheumatologists. I’d never seen a rheumatologist, except for one of those outside, 1-time referrals, and all he did was rule out Lupus. Yes, I’d had more than 10 years of joint pain and hadn’t been examined by a rheumatologist. It sure was in a shitty system.

I found a list of local rheums, made a lot of phone calls, found one that my insurance would reimburse me for, and made an appointment. Within a few weeks I had my first diagnosis: autoimmune disease. Shameful that it took more than 10 years, but I finally had it! It wasn’t in my head!

I was lucky. I was also opportunistic.

A few years back it was obvious I wasn’t absorbing iron properly. I tried every type of supplement. I ate red meat and spinach. But my ferretin was still way too low. I asked around and researched and found a great hematologist. On my way to the appointment, I realized I never got a referral from my primary care physician! Without that referral, insurance wouldn’t pay for it. Damn! So I called up the office and they wouldn’t give me the referral because this doctor was at a different hospital and they got a lot of pressure to only give referrals to doctors at their own hospital. But I already had this appointment, I was in the car already headed over, and this guy was supposed to be really good. She wouldn’t budge. So I fired her. I immediately looked for a new doctor.

In case you’re wondering, when I arrived at the hematologist’s office I was basically in tears. I had waited 6 months to see this doctor, and now I didn’t have a referral. They called out their billing specialist from the back office. He was a nice guy and reassured me that they’d work it out. I saw the hematologist. He ordered iron infusions and they helped. The billing specialist also recommended his own PCP, who I switched to immediately. (That didn’t work out, but that’s another story.)

I didn’t liked my doctor, so I found someone else.

Years before that I wanted to see a specific endocrinologist, but my doctor wouldn’t give me a referral. I tried other doctors with no luck. So I reverse engineered it – I called that endocrinologist’s office and asked which doctors give referrals to him. His administrator wasn’t allowed to tell me that, of course, but she said that she could tell me that she and her coworkers all saw Dr. J and loved her, and that they recommended her. Sure enough, I loved Dr. J, and she gave me that referral to the endo.

I went to a lot of trouble to find a doctor who would give me the specific referral I wanted.

Now I just started with a new doctor who I love. I love the approach of his entire office. I love that we have conversations about my treatment as equals. I tell him about research I’ve read and he listens respectfully, then counters with his own argument. He’s glad that I debate with him. I wanted to see him years ago but I had doubts about leaving the hospital network I was in. I should have done it anyway. Now my PCP can’t read the notes or tests from my specialists and they can’t read his because they’re in different hospital networks. That means I have to be the one to ferry records back and forth. It’s a pain in the ass, but it’s worth it. I love this guy, and I’m certain my treatment will be much better. I waited longer than I should have, but at least I finally made the switch.

I took a chance and it was worth it. Sometimes it’s not, but I have to try.

I know that some people have fewer options. There’s only one specialist within 50 miles. Or their national health insurance assigns doctors to them and they aren’t allowed to switch. But I also know that sometimes we follow rules or conventional guidelines when we shouldn’t. Sometimes we have to find loopholes. Sometimes we need to ask for help. I have found many workarounds to the “rules” over the years.

It doesn’t always work out in my favor. I admit that. But I also know that almost every single health improvement I’ve had has been because I did my own research and pushed to find the doctors who would give me the tests and treatments that I felt I should try.

I have a kick-ass team of doctors now. But that didn’t happen by accident. I worked fucking hard to make it happen.

Lucky me.

What has your experience been? What will you do to make your own luck? Please share in the comments. We can learn through each others’ experiences!

10 Comments | Decisions, Expectations, Frustration, Healthcare, Medication, Rants, Raves, Support | Permalink
Posted by chronicrants

The futility of “You get what you pay for” in healthcare

May 15, 2016

It started as a normal health conversation. I was talking to someone I knew who just got her license (like a prescription) for medical marijuana. She was talking about how great her doctor was, and how I should see him.

I had just started the process to get a license myself. I pointed out that I had already seen a doctor and I wasn’t about to see another. She said I should see hers when I have to renew my license (in 6 months, per state law.) I pointed out that my doctor is cheaper. And that’s when she said it.

You get what you pay for.

I was stunned. First, that’s obviously not always true. My smartphone, for example, was one of the cheaper ones out there, but it’s been running perfectly for 2.5 years. I have plenty of friends with phones that cost twice as much that haven’t lasted as long, or with shorter battery lives. More expensive is not always better.

But more than that, she knows about my financial situation. So even if she’s right, why would she suggest that I spend an extra $100-200 per year unnecessarily? How insensitive!

To be fair, I don’t think she fully understood what she was saying. She became unable to work before she ever reached the age to work. But at a young age she also moved in with the man she later married. He has a good job that easily supports them both. Funds aren’t unlimited, but they take the occasional trip overseas, have 2 dogs, live in a nice apartment, and can afford extras that help her health-wise like massage appointments and laundry service. That’s the only adult life she’d ever known.

So she doesn’t know what it’s like to know that every penny you spend is being pulled out of limited savings. She doesn’t know the fear that if you spend too much, you will run out of money, and then what?

I shook off that comment. I was too surprised to coherently answer, and I knew it wouldn’t matter anyway. Still….

You get what you pay for.

Maybe she’s right? I’ve thought about it a lot in the last two days. Maybe I should have seen that other doctor. In theory, I got what I needed: the license. But her doctor did sound helpful. He gave her personalized advice: which strains of cannabis to buy, how much to take, etc. Then again, it’s too soon to know if his advice was accurate. Maybe it was, and maybe it wasn’t. Maybe my doctor’s more generalized advice will turn out to have been more useful.

In 6 months I will need to decide if I should see the same doctor I already saw, or try hers. I’m not sure what I’ll do. What I do know is that line rubbed me the wrong way.

People are constantly offering suggestions of things that will help my health: acupuncture, massage, Alexander Technique, etc. Many of these will and have helped – but who’s offering to pay for them? No one!

So from now on, I think that will be my response. When someone says, “You get what you pay for” or “You should try X” (and of course X isn’t covered by insurance) I’m just going to say:

Are you offering to pay? Thanks! I’d love to try that!

What about you? Have you encountered comments like these? What do you say? Please comment below! I’d love to know!

5 Comments | Frustration, Insensitive, Intrusions, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: | Permalink
Posted by chronicrants

How little pain should I expect?

May 5, 2016

So many doctors have made it clear: I shouldn’t expect to ever live a life without pain again. Ok, I’ve accepted that. But lately I’ve wondered: should I raise the bar for my own pain relief expectations?

I’ve been watching friends, acquaintances and strangers online dealing with their chronic pain. They complain about their pain, while still trying to live somewhat normal lives. They complain that they can no longer go jogging, work two jobs, carry heavy loads, or climb a lot of stairs. At first I’ve thought, “well of course you’re in pain, you shouldn’t expect to still be able to do that.” But then I thought, maybe they should. Maybe I should.

Obviously there are limitations. I’ll never be able to jog. Or work two jobs. Or for that matter, carry heavy loads or climb a lot of stairs, either. But maybe I should be able to do more than I’m doing now without feeling so much pain.

Some days it isn’t that bad. It’s nothing more than a nuisance. But then, I never try to do anything pain-inducing anymore. I don’t think about it. I simply haven’t done those things for so many years that it never crosses my mind to pick up something heavy, reach out my arm at a certain angle, or sit still for a long time. I shift my position constantly without realizing it, because over the years I learned it was necessary and I did it so often that it became automatic. But maybe I should be able to sit still for longer without feeling pain?

There aren’t a lot of options. I don’t like using prescription painkillers because they upset my stomach and it doesn’t seem worth it. I’ve tried NSAIDS, steroids, Plaquenil, Cymbalta…. it’s not like there are a lot of prescription options left. I try nonprescription things too, mostly through my naturopath.

But today I opened the door for a new possibility. I registered for medical marijuana. The United States is a funny place. I know a lot of you aren’t in the U.S. so basically, marijuana is illegal on a federal level, but some states have made it legal. That means that technically you could get in trouble for having it even in those states where it’s legal, but chances are the feds won’t bother you unless you’re a big player of some sort. On top of that, our current federal government has specifically said they’d lay off. It’ll be interesting to see what happens after the next election. But I digress….

As I was saying, I registered for medical marijuana today. I paid $200 to see a doctor, because none of the doctors who do this are covered under insurance. In a few weeks I should have my license from the state. Then I can buy medical marijuana, also called cannabis, but going to a dispensary (there are about a half dozen in the state so far.) I learned about the different strains. It’s possible to get strains of cannabis that help the pain, nausea, or other symptoms without getting you high. That’s what I’ll be aiming for.

But what’s my goal? When I walked in the door today thinking that I wanted to use it for the days when the pain is the worst. The thing is, the people I spoke to there acted like I’d be using it more often to help the pain more often. After all, hadn’t I just said that I was in pain all the time?

I have no intention of using it all the time, of course. But maybe I could use it more, so that instead of only using it on the worst days, I use it on all be the best days. Because shouldn’t my goal be to feel as little pain as possible?

Obviously I have to wait and see how I feel once I start. Maybe I’ll want to use a lot of it, maybe not. I’ve used it before, so I know that I’ll at least want to use it for nausea and digestive pain. It’s a miracle for that. But what about my joints? If it helps my joints, should I try it? And I learned today that it can help fatigue. That could be a life-changer!

I don’t expect this to cure me. I don’t expect to be pain-free. I don’t expect to walk 5 miles or lift a 5-year-old. But maybe taking a swim and cooking dinner the same day should be a reasonable thing to expect?

How do you set your expectations? Our abilities and symptoms are all so different, but we all have the same problem of figuring out what limitations are reasonable and what aren’t. How do you figure it out? Please comment and let me know!

9 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

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