The government is voting to kill us

March 15, 2017

On the one hand I don’t want this blog to get too political. On the other hand, how can I not discuss politics when the government is talking about taking healthcare away from millions of people!?

There is a lot I want to say, and I can’t say it all at this moment, but rest assured I will be back to discuss it another day!

For today I want to talk about this feeling that the government is trying to kill us, and how healthy, working people respond to that.

You see, I have said many times that the government is trying to kill us. If you don’t know what I’m talking about, look at that link above. Many healthy friends with jobs think it’s an exaggeration. Most of them will have health insurance through their employers. It might cost more, but they can make up the difference if they cut back in other areas. They hate it, but it won’t kill them.

And if they did lose their insurance, it would suck, but they could cough up the money for the occasional doctor visit or antibiotic. They would hate it, but it wouldn’t kill them.

Then there are people like me. I’m not nearly as well off as they are, but not as badly off as many of my other friends. Because most of my health conditions are pretty stable. If I miss a medication for a few months my health would decline, but I wouldn’t die immediately. I have savings and supportive parents who can afford to help me to a certain extent. We could find a way to cover my more basic health costs for many years. And maybe I would skip seeing the doctors who didn’t feel entirely necessary (though really, I try not to see doctors unless it’s necessary!) And hopefully, eventually, a new political party in office would fix things. We could cover the gap. Besides, I am likely to have some insurance coverage, even though it would be greatly reduced.

But then there are other friends of mine, not to mention the many strangers I have never met. These are people who do not have safety nets. They are more likely to lose their insurance altogether and they do not have the money to cover the costs. For these people, there will be no way to see a doctor or take a prescription. Even worse, many of them have illnesses that will quickly kill them.

These are limited examples, of course. I’m not getting into the many thousands who will become bankrupt and the many other thousands who will have to quit their jobs due to poor health.

These are horrible circumstances. Any reasonable person is upset by this. And then we remember…. our politicians are the ones who want to do this to us. A handful of people with high salaries and kick-ass health insurance (congresspeople have the best health insurance in the country) are deciding whether people like me will be able to see the doctors we need to see.

If you’ve been reading this blog from the beginning, then you know I was working when I started it. I hated to leave my job, but there was no way I could continue to work. I spent years fighting for the benefits I had paid for and deserved. It was a miserable road and I was horribly sick. Now, finally, my health is improving! It is not perfect by any means, but it’s so much better! I’m even looking for ways to start doing a little bit of paid work. This new health insurance situation could destroy that progress. It could stop me from earning any money at all. It could dash my dreams permanently, by making my health worse in a way I might not be able to recover from.

If that sounds dramatic, good! Because it IS dramatic! We are talking about taking away the ability for people to care for their health.

Healthcare should be a right, not a privilege reserved for the rich. But that is what the republicans in this country want. They want to give more money to the rich even if it means killing the poor.

They should be ashamed of themselves. They are voting to kill us.


What is that ghost pain?

March 3, 2017

My physical therapist kept asking “Does anything hurt?” It was a good question, but I had no idea how to answer.

I felt pain that I knew was pain, and then I felt other pain that wasn’t real. It wasn’t in my head, exactly. It was more like my foot had fallen asleep, but instead of pins and needles, it hurt. And that spot on my leg. And my shoulder.

I have had so much pain for so many years, I’m good at ignoring it. Then when someone asks if I’m in pain I need to stop blocking it out, and it comes rushing at me all at once. PAIN!

This took it to a different level. I had acknowledged my pain, but by focusing on every movement, every massage, and trying to determine if it was causing more or less pain, I was too focused. It gave the impression that everything hurt. But there were different kinds of pain, and some were more “real” than others.

This isn’t the first time this has happened. But since I was lying on the massage table for a while, I had plenty of time to think about while I tried to figure out if that pain in my back was real pain or this ghost pain. And did my ankle really hurt, or was that more ghost pain?

I wonder if I’ll ever find a way to explain this to someone who hasn’t experienced it? “You see, there’s real pain, then there’s this shadow of pain that can pop up anywhere….”

Have you experienced what I’m talking about? If so, do you have any idea what it is???


The magic healing power of the pooch

October 8, 2016

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I saw my naturopath the other day and she asked about my recent health. I had two answers: one set for before the pup’s visit and the other set for during.

But now he’s been gone for a week and I miss him horribly. And I’m not feeling as great, either.

It was a nice coincidence that he arrived the same day the weather changed. Summer sucks for me, and my symptoms ease when the temperature and humidity drop. I was simply lucky that those changes started the day my mom dropped him off at my place.

Then for 8 days we cuddled, we walked, and he kept me on a schedule. Like it or not, I had to take him out 3-4 times per day. I usually didn’t want to, but once we were outside, I figured we might as well walk a bit. After all, it made him so happy.

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Every time I took him for a walk, I went much farther than usual. Then on the way home, I’d take a longer route so he could walk more. Or I’d get home, then walk a few more blocks and then back. Because he loved it.

I should have been fatigued, but I wasn’t. The change in weather helped, but not that much. I was tired each evening, but not fatigued, and that makes a huge difference.

Then we would cuddle. I learned when he was most likely to cuddle and I changed my schedule to get more cuddle time! He was cuddly in the morning after his breakfast, so I set my alarm earlier so we’d have more cuddle time between his breakfast and mine. Seriously. (This photo was taken in the evening. I tried to balance the laptop on one leg while he slept against me. Heaven!)

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I had less pain, too. Even with all of that walking, my toes hurt less. And the rest of me hurt less. Or maybe I just noticed it less. Either way, I loved it.

Plus I saw more people. Even though I didn’t see many friends while I had him (not his fault – some of my plans fell through when someone got sick) I talked to a lot more neighbors. Everyone wanted to pet him. We were stopped constantly when we walked down the street. I was amazed at what a difference it made in my mood to be able to talk to so many people.

In general, I was happier. Just happier. Every single thing I did was better with him around.

When I had to give him back to my parents I almost cried. When they got him, though, my mom kept saying that I looked happier than she’d seen me in a long time. And I was.

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One day I’ll have a dog of my own. In the meantime, I’ve asked my parents if I can borrow this special guy for a few days next month. Because he truly is the best medicine I could ask for.


Why I prefer the virus

August 25, 2016

A few days ago I wrote about some symptoms I was having, but I didn’t know why. Now I know.

When I felt fatigued, brain fogged, and just “off” for the first couple days, I assumed I was just having “bad” days. After 4 days I was concerned. What if this wasn’t just my typical “bad” days? I wasn’t getting better. What if this was a long-term issue? That happens all the time, after all. I get a new symptom, or an old symptom becomes worse, and it stays that way for months or even years. Crap crap crap!

On day 5 I was fed up and I emailed my Naturopath. It was a Sunday, but I felt better having reached out anyway.

The next morning she wrote back: there’s a virus going around with my exact symptoms. I wrote back that I don’t have any other virus-like symptoms. No runny nose, sore throat, or upset stomach. She assured me this is what the virus is. Extreme fatigue. I decided to accept that. And then something interesting happened.

I rested.

For the first few days I had tried to continue my normal life. That means trying to “be productive” and “get stuff done.” Sure, I might be doing a lot less in a day than a healthy person, but I was doing it nonetheless. I was working on blog posts for this and another site, I was thinking about doing my laundry (though no actually doing it,) I was trying to clean up around the apartment. But I was failing at all of it. I just couldn’t manage.

Then I spent a couple days not doing anything and feeling guilty about it. I’d accepted that I needed to rest for a few days, but there were so many things I should be doing. I even went out briefly one day to get a prescription and some groceries. I felt bad about canceling plans with friends. It sucked.

Once I was told I had a virus, though, I rested without guilt! It was lovely! I watched tv, crocheted, listened to audio books, and read. My only responsibility was to keep myself fed, and I did that with simple meals: eggs, leftovers from the freezer, sandwiches. I washed dishes only as needed.

If I’d rested from the start, the virus probably wouldn’t have lasted so long. It was 8 days. Today is the first day I feel 100% over it. But I probably would have felt better days ago if I’d only rested from the start.

The thing is, when you have chronic illness you can’t rest every time you feel bad, because you’d never do anything. Even when my fatigue was at its absolute worst, I did stuff. Or I tried to do stuff. Or I felt guilty about not doing stuff. Because I felt that way every day, so pushing through was the only way to get shit done.

But a virus is different. It’s temporary, and we know it’s temporary. Resting with a chronic illness, only feels good in the moment, but resting with a virus means overall improvements in health. It’s worth resting if it means I’ll get better, right? So I rested.

And on top of that, there’s the sympathy! Family and friends were checking on me every day. That doesn’t happen with chronic illness. And I get it. Checking on someone every day for a week is one thing, but you can’t check on someone every day for the rest of their life. Still, it felt good to know people were thinking about me and wishing me well in the moment.

So given the choice, sure, I’ll take the virus every time! I felt only slightly worse that usual, and in exchange….

I got to rest without guilt!

What about you? Do you feel guilty when you rest? Do you find it easier to have a virus that you know will go away? Or are you the opposite? Please comment and let me know how you feel about it!


What if this symptom is different?

August 16, 2016

How am I supposed to answer the question, “What causes X symptom?” The thing about the kinds of autoimmune illnesses I have is that the symptoms can vary a lot. My Hashimoto’s leads to fatigue and difficulty adjusting to temperature changes. Someone else with Hashi’s might not have those symptoms and might instead be overweight and have no eyebrows. And I have multiple illnesses like that.

Even better, some of the illnesses have overlapping symptoms. The pain could be from Hashimoto’s, Celiac, or connective tissue disease. So when the doctor asks, “What’s causing the pain?” I just shrug. Sometimes I can tell. Sometimes I can’t. So be it.

But this also means that when there’s some new symptoms, I just assume it’s because of these illnesses. I make that assumption even when I probably shouldn’t.

Blood when I poop? That’s probably the Celiac. Pain in a new place? That’s probably the connective tissue disease. Except I could be wrong.

I often have new symptoms that are strange enough or severe enough that most people would see a doctor. Sometimes it’s clear what the cause is, but sometimes it isn’t. And I don’t want to be rushing to the doctor every time. It’s tiring, it takes time, and my doctor is too likely to stop taking me seriously.

The thing is, what if it’s serious? I wonder about this sometimes. A friend had symptoms that her doctors attributed to her chronic illness. She pestered them to run more tests. It turned out to be cancer. A friend without chronic illnesses recently had severe pain out of the blue. He went to the emergency room and had all sorts of tests done. It turned out to be nothing much. It could have also been nothing important. When is it worth running the extra tests? When isn’t it?

I wonder if other people with chronic illnesses have these concerns? I’m I being to cavalier? Should I take certain symptoms more seriously? If so, which ones? And would my doctors also overlook my symptoms and automatically attribute them to my chronic illnesses?

What do you think? Do you ever wonder about this? How do you handle it? Please comment and let me know what you do.


Because it can never be simple

August 9, 2016

The appointment went well. The doctor was great as always: smart, personable, and though always busy, acting like he has plenty of time to talk to me and answer my questions. Yes, I like this guy a lot. His new fellow (it’s a teaching hospital) seemed really good, too. I left with a plan.

The next step went better than usual. Instead of waiting 6 months or more for my 3-month followup, I actually got an appointment in just 3 months! I was told they had hired new residents and that freed up some of my doctor’s time.

I happily went for blood work. They usually stop taking patients at 5:15 and it was 5:20, but they said they were happy to squeeze me in. Good thing I’m an easy draw!

Yes, everything was going smoothly. Until it wasn’t. Because apparently I can never just simply have a good, smooth, simple appointment.

I felt the needle moving around my arm. Then it moved more. It wasn’t slipping, it felt deliberate. I didn’t look – I never do – but I asked what was wrong. The phlebotomist told me the vein was moving away from the needle, and that that can happen with overuse.

Overuse. Sheesh! Well, it was probably true. I’ve gotten A LOT of blood drawn over the past 20+ years since the doctors first took my symptoms seriously. And it was almost always in my left arm, because I have so much more pain in my right. And it was usually in the same spot on the same vein, because that’s the one that pops right out, practically asking to be stuck. So yeah, I could imagine overuse was a possibility. This would suck. I’d have trouble doing it on my right. But what could I do?

She offered to try a different vein in my left arm but I said no, to just do my right. I didn’t like the way that needle had felt in my arm. It had made me a bit queasy. I just wanted this over. Then I felt funny.

Then she was running into the room with water. Wait, hadn’t she been standing next to me? Apparently I’d lost a minute somehow. She was calling out, “Bring me some juice ASAP!” I drank the water. She put a cool wet papertowel on the back of my neck. The room was swimming. My face was tingling. I felt foggy-headed. I drank more. I was having trouble sitting up straight. There was juice in front of me. I drank it. She said my color was coming back. I hate to think how bad I must have looked before that, because I doubted I was looking so hot at that moment. I drank more juice. There was a nurse in the room. A doctor came in. They all looked concerned. Oh boy.

The room was steady now, but I felt a bit shakey. I walked around a bit, because they wanted me to prove I could. Thankfully, this was one of the only times I hadn’t driven to the office; I had taken the bus so I could avoid rush hour traffic going home. I was worn down, but generally feeling better. But I was confused. I wasn’t foggy-headed, just confused. What the fuck just happened?!?

The staff kept reassuring me, saying that this was common. Maybe it’s common to them, but not to me! I was seconds away from fainting and I don’t faint. Ever. Ok, once, but I had lost a lot of blood that day without eating anything and that was 19 years ago. This made no sense! Once last year I had 9 vials drawn as a fasting test and I just felt a little light-headed afterwards. I drank water, ate a granola bar, and was completely fine. I’ve never had anything like this! And besides, she hadn’t even drawn blood!

The staff was great. I left the office after drinking more juice, eating a bit, and promising to eat more when I got home. Good thing I always carry food with me, because all they had was gluten-y food! I wasn’t hungry in the slightest, but I forced myself to eat.I promised them I would take an Uber home instead of the bus. Luckily I had just used Uber for the first time a couple weeks ago, so I had the app on my phone and knew how to use it. The doctor gave me her cell phone number and made me promise to text her so she’d know I got home safely.

Waiting on the street corner for the Uber sucked, but he finally came and we made it home. I was in the office so long that by then, ironically, traffic wasn’t so bad. The minute I got home I pulled off my clothes and put on something comfy, texted the doctor that I was ok, grabbed some juice, and got on the couch for some light tv. After several hours of lying down, watching tv, and feeling like crap, I suddenly started to feel better. Thanks to my chronically ill body, of course, I still felt fatigued the next day from the whole experience, so it took another full day of resting on the couch before I felt decent enough to leave the house. And then finally I could think about all of this.

The phlebotomist, nurse, and doctor who had crowded around me all mentioned something with a “v” that I couldn’t remember. When my doctor and his fellow heard about what happened, the fellow called me. We talked for 20 minutes. She felt it was most likely a vasovagal response. Ah hah! That was the “v” word the others had used! Today I saw my naturopath for a checkup and she also felt I’d had a vasovagal response.

Basically, it’s the body overreacting to a trigger. Often the trigger is the sight of blood. The sight of blood doesn’t phase me in the least. The feeling of a needle moving around in my arm, on the other hand….

So that’s the theory. And there’s no way to know if it will happen when I return next week for that blood draw again. Or if it will ever happen again. Maybe it won’t. But with my luck healthwise, that’s probably too much to hope for.

So much for my simple appointment.


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!


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