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 guilt of not working on the “good” days

June 26, 2016

“Would get a job if you were feeling better?”

It wasn’t a doctor or a judge or a parent asking me this, but a friend who has chronic illness herself. I suspected her motives, but before I asked her about them, I answered her first. It’s not an easy question to answer, only because there are so many answers!

  • If I was feeling slightly better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better every day and thought it would last, I would consider working, but I’d try working for myself first. If that failed after 6 months or a year, then I’d give in and get a job.
  • But if I was feeling a lot better every day and didn’t think it would last, I wouldn’t get a job.

And those are just a few possibilities. And they don’t take the loss of my social security and other benefits into account because my friend asked me to discount them. When I felt a lot better recently I was already working on a project to earn money from home. And sure, I started thinking that I could put more time into it and stand a better chance of succeeding. But then in the blink of an eye I returned to how I’d been feeling before. But even when I was feeling better I wouldn’t have considered getting a job, not only because I don’t want to work for someone else if I can help it, but because how I felt was still unpredictable. Better to work on my own schedule from home and not worry about someone else’s timeframe or spending energy on commuting.

But that’s me, and everyone is different. My friend had been doing much better lately, so she felt like she *should* work. She didn’t want to, but she was supposed to. Her husband came home tired from work every day, while she got to be at home. On the days she felt horrible she felt bad about this, but knew it was necessary. But now she was having more good days and felt she should do more. But her good days were unpredictable, so how could she do it?

Of course, she’s not the first one to raise this subject with me. Many of my married friends say they feel guilty that their spouse is solely responsible for supporting the family financially. Sure, some couples choose to have one person work while the other does not, but that’s a mutual decision. When chronic illness and disability are involved, it feels like there’s no choice.

One financial downside to being single is that there’s no one around to bring in any money. On the other hand, I’m only responsible for myself and my own feelings, and that’s freeing. I still feel sometimes like I *should* work, but only in a general way, only because that’s the pressure that I feel from society overall, and not from anyone in particular. Not that my friend feels pressure from her husband. But she’s aware of his extra responsibility. No one is responsible for me but me. It’s not easier, just different.

For my friend, I suggested that she volunteer one or two days a week to test the waters. She said she’d been thinking the same thing. I hope it works well for her. I really do.

As for me, I hope to never have another job, but I sure would love to earn a living with my own business! I’m working on it slowly, putting in a few hours here and there when I can. It’s going slowly. It may never work. But I’m trying. So maybe that’s my answer to the question? I’ll just keep trying to earn what I can when I can, but in a way that doesn’t set back my health. And of course, that’s the hardest part of all.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Limitations, Pain, Rants, Unpredictable | 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

My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!

15 Comments | Decisions, Expectations, Fatigue, Isolation, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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