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.

6 Comments | Decisions, Expectations, Frustration, Healthcare, Rants, Symptoms | Permalink
Posted by chronicrants

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.

4 Comments | Expectations, Frustration, Healthcare, Rants, Symptoms, Unpredictable | 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

Confronting the ghosts of medical experiences past

May 10, 2016

Two weeks ago someone I know through my chronic pain support group asked if anyone could give her a ride to an appointment in a town that she can’t get to by public transportation. I volunteered. Little did I know.

It wasn’t until after I volunteered that I thought to ask where in that town her

IMG_20160510_164221

Where I walked after confronting today’s ghost.

 

appointment was. It turns out, it was at the same medical center that I went to for my entire childhood. It’s the place where I was treated badly over and over and over again.

My first reaction wasn’t a good one. I pictured the ride up that elevator. I remembered the waiting rooms. I flashed back on the parking garage. And I got really anxious.

And that’s while I was still sitting in my living room!

If figured I could drop her off, find someplace else to wait, and then pick her up. But I was still worried about how I’d react when the time came.

Then someone else in the group volunteered to take her. I told her that if she didn’t mind, it would help me out if she could go with the other person. I never told her why – why cloud her opinion of the place? I was incredibly relieved, but still, the entire thing brought back a lot of memories I’d managed to block out.

Today was different. When a friend called and said she was anxious about an appointment and asked me to go with her, I asked where it was before I answered. I’d learned my lesson. It wasn’t until we arrived at the office (which I’d never been to) that I saw the name on the door. Oh my!

This was the surgeon who messed up my treatment when I was 18. On top of that, he was a real prick. I never call anyone that, but he was. He was a jerk. An asshole. He told me that I shouldn’t complain about the pain I was in because the Olympic gymnasts (it was during the Olympics) were in worse pain (who would he know?!) and look what they could do.

If I was better at standing up for myself back then, I would have pointed out that they had a choice. I didn’t. And I would have pointed out that he was a real jerk for talking to a 17-year-old like that. And I would have never seen him again.

But I didn’t say any of that. Instead, I returned to him and let him perform surgery on me. What was I thinking?

And I saw him today. My friend asked me to go into the appointment with her. I put my feelings aside and acted like I didn’t know the guy. I supported my friend. I took notes. I asked questions.

And now I’m not sure how I feel. I went to a pretty wooded park and walked around for a bit after that. I pet a couple of dogs that people were walking (because any day I pet a dog is a good day!) But I didn’t think about that doctor at all.

Maybe I’ve moved past it. Maybe I dissociated from that guy. Maybe I’ll have nightmares tonight. Maybe this will catch up to me in a week. I don’t know.

All I know is that right now, at this moment, I’m feeling ok. I’m focusing on that. And I’m going to try extra hard to avoid horrible doctors and terrible buildings from past experiences, but I know that might not be possible. After all, I’ve seen a whole lot of doctors in over 20 years of living with chronic illness in Boston. I guess it was inevitable that I’d face some of these ghosts again. I just hope it’s the last time for a while….

Have you had experiences like these? How did you handle them? How do they make you feel?

2 Comments | Frustration, Healthcare, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »