That sinking feeling

October 9, 2015

I’m sorry I haven’t written in a while. I’ve thought about it but, well, life’s been a bit rough lately. I’ll be writing about it one of these days, but I’m just not ready it. So instead, let’s talk about the phone call I just received 15 minutes ago.

***********

*ring*

Hello?

Hi, this is H from Dr. Z’s office. Do you have a moment to talk to Dr. Z?

Oh boy.

I’ve been Dr. Z’s patient for 10 years now, and this is the first time his office has ever called me for anything other than rescheduling an appointment. I immediately thought about the bloodwork I had done last week. Could it really be that bad? I’m seeing him in two weeks; what couldn’t wait?

I’d had a few things tested it. As it turns out, the concern was about my thyroid results. Unfortunately, he doesn’t test the Free T3, which I think is the most useful. Still, my TSH was very low. It could have been worse, but it was definitely too low. I’d raised the med during the spring and summer. I’ve read that some people need to make changes seasonally and I guess I’m one of those people. I’d completely forgotten about it, though, until a few minutes ago. Apparently, I need to lower the dose again.

So why did he call? Because at these levels, I’m at risk of being hyperthyroid, which means having an overactive thyroid. That would put me at risk of all sorts of things, include heart problems. You don’t want to mess with that shit! I’ve had low numbers before, but never this low. So he wanted to check on me.

Thankfully, I’ve done enough research to know what the symptoms of hyperthyroid are, and I’m not having those. Well ok, I’m having some anxiety, but it’s a very specific kind of anxiety that’s completely warranted, but I’ll get to that in a future post. I’m not jittery, my heart isn’t pounding, I’m not shaking. So I’m ok. For now. But I better start figuring out when to lower my thyroid dose.

There are people who never have to worry about that feeling. They never get medical tests. Or they get tested for relatively harmless things that are easily cured. They don’t know that sinking feeling of hearing that a doctor wants to talk to you about recent test results.

I’ve had that sinking feeling many times before. Sometimes it worked out ok (like when the biopsy showed I *didn’t* have breast cancer) and other times not so good. And those not-so-good memories are why I get the sinking feeling in the first place; because I know it really might be bad news.

Today I’m lucky. Today it’s not so bad. Today I know what symptoms to watch for and I know that I’ll be just find as long as I take the right actions.

I just hope I’m as lucky next time.

4 Comments | Expectations, Healthcare, Medication, Milestones, Rants | Tagged: , , | Permalink
Posted by chronicrants

Even when they’re wrong, it’s still my fault

August 12, 2015

Let’s face it, sometimes customer service representatives aren’t trained all that well. I once had one of those jobs, and I mostly learned what to do through trial and error. I’m sure some callers were annoyed at my inability to immediately solve their problems, but since I was offering technical support on phones, it wasn’t a big deal if something wen8-12-2015 6-10-09 PMt wrong.

Until I got really sick, most of my experience with calling customer support fell into those kinds of non-essential categories. Maybe the cable bill would be screwed up or I wouldn’t have internet access for two days. This was really irritating, but I knew it would eventually be fixed. I also knew that I’d receive reparations for my hassle.

Unfortunately, it doesn’t work that way with government entities. If they get something wrong, it’s still considered my fault. A few weeks ago I wrong about my frustration with SSDI benefits, mostly based on a phone call with a representation at the SSA (Social Security Administration.) I’d read everything, but it’s confusing, so when she corrected me, I assumed she was right. I should have known better. Thankfully, reader StuckInTexas commented and corrected me. But what else are they getting wrong?

I called the SSA 4 times to report earnings from a bit of work I’d done. It was handled 4 different ways, including 1 representative who was so confused, I just gave up and hung up the phone.

Yesterday I called Medicare to ask if a certain treatment was covered. They said yes, but only under certain circumstances. Those circumstances weren’t 100% clear, and when I asked questions, they just reread the same passage. To me it sounds like what I need will be covered, but they wouldn’t confirm that. They were happy to repeat, though, that it’s my responsibility to make sure it’s covered. How is that logical? I can understand that it’s my responsibility to call and check, but if I call and they refuse to confirm, then what? Do they really expect patients to move forward with appointments and treatments without knowing if they’re covered? Obviously that’s sometimes necessary, but often it isn’t.

MassHealth, our state Medicaid, was different. She simply said she couldn’t tell me and then she passed the buck: she said my doctor had to call the provider line. I can only assume the representatives on that line are better trained and will be able to answer the question. When I asked about covering a TENS unit, for example, she didn’t know what it was. When I spelled it, she still didn’t know. Medicare doesn’t cover it, but at least that representative knew what I was talking about. I think. Maybe she didn’t. Maybe they really do cover it. I don’t know!!

Yesterday I got a long form in the mail from the SSA. They want me to fill out all earnings I received since I went on SSDI. This was triggered by the earnings I recently reported, but I thought that only happened if the earnings were $750 or higher in one month. My earnings weren’t over $400! So now what should I do? I don’t want to have to fill out the form, but even more, I don’t want to be put in the category of people they “observe” unnecessarily. I want to call the SSA to check on this, but I’m pretty sure that if I call 5 times and speak to 5 different people, I’ll get 5 different answers! And if I do get 5 different answers, they’ll still say it’s my responsibility to handle this correctly. If I get 1 answer from everyone and it’s wrong, then the SSA will still say it’s my fault, even if I do exactly what they tell me to do. Don’t believe me? Look at what happened to these disabled folks who were on SSI.

I will take responsibility for my own mistakes. But I think these big government entities should do the same. What do they really expect from us? If they can’t manage to properly train their own employees in these complicated rules and regulations, is it reasonable to expect the general population to understand these same complicated rules and regulations? I don’t think so.

Have you encountered anything like this? How do you handle it? And if you’ve had to report income while on SSDI, did you have to fill out tons of paperwork? Please comment below so we can help each other out!

7 Comments | Educating, Expectations, Frustration, Medication, Rants | Tagged: , , , , , , , | Permalink
Posted by chronicrants

The shock of speaking with a supportive doctor

August 9, 2015

“I’m impressed by how well you know your body.”

“It’s not your fault you have gluten intolerance or hypothyroid. It’s just what you’ve had to deal with and it seems like you’ve been doing a great job.”

I’m not used to hearing things like this, especially from a doctor. Who was this amazing stranger?

24 hours ago life was good. I’d had a fantastic day with first one friend, then another. I’d spent a lot of it outside on one of the rare August days that’s cool enough for me to be outside. I was happy and content and tired in a good way. It was an absolutely perfect day. Until the reaction.

I’d been putting off trying Metformin for ages. I was worried that it wouldn’t sit well with me. I know a lot of women have problems with it. But I was also running out of options. I can’t take estrogen because of the side effects, and ditto for progesterone. My naturopath wants to try some homeopathic treatments. My only options were the homeopathy, Metformin, or literally scraping my uterine lining. I’d prefer to avoid that last one. So after dinner, I swallowed 1 pill. And almost immediately it hit me.

Diarrhea, nausea, and a racing heart all waxed and waned for what seems like years. After several hours of symptoms I texted my aunt my symptoms and asked her to get my uncle’s opinion. He’s a non-practicing doctor. The last time I had a bad reaction to a medication he told me to wait it out. When I blacked out in their living room he took my blood pressure and had me rest. He’s never told me to go to a doctor. This time, he told me to call my doctor. So I knew I should do it.

It takes a lot for me to call my doctor. I’m sure many of you can relate. I’m used to things going wrong with my body, so I don’t panic. And the diarrhea wasn’t so bad. It was certainly less bad than my reaction to eating gluten. But the racing heart had me worried. My resting pulse is around 75. I kept checking my pulse using a phone app. It was 82, 89, 95, 94, 88, 83, 99, 101, 109…. I didn’t like that my pulse had gotten better, then worse again, and so had the diarrhea and nausea. I almost never call a doctor after hours; the last time was probably 10 years ago when I was coughing up green phlegm. But this time it seemed like the right move, so when my uncle told me to call, I did.

My endocrinologist (who prescribed the Metformin) doesn’t have after hours, so I called my primary care physician’s office. Just 5 minutes after I left the message I got a call back from the doctor on call. This was 10:30 on a Saturday night, so I wasn’t sure what to expect. This guy was amazing! He spent 25 minutes on the phone with me. I stated my symptoms, the timing, and what I’d been doing (orange juice in case it was a blood sugar problem (because Metformin can do that), sucking on ice to stay cool and hydrated, etc.) I was a bit defensive and insecure as I stated just a few of my current diagnoses. I was apologetic for calling. I couldn’t help but brace myself for the doubt that usually follows, so I was shocked when, instead of doubt, I received support!

Thankfully, he didn’t feel I needed to go to the hospital unless things got worse. He agreed with me that, because of my immune system problems, it was best to keep me away from the hospital as much as possible. That was a relief. The shock was the way he treated me. Instead of assuming I was exaggerating, he took me seriously. He said more than once that it was good I called. He told me how impressed he was with the way I was responding to his questions and monitoring my situation. He couldn’t have been any more perfect.

My current doctor is supposed to be the best, but I haven’t been thrilled with him. Now I’m thinking about switching. I might be much better off with whoever belongs to the voice I heard over the phone last night who was calm, reassuring, supportive, and clearly knows his medicine, too. I don’t have to decide now, but I’m definitely going to give this some thought.

As for my own saga, another 1/2 hour or hour after I got off the phone and had texted an update to my aunt and uncle, my symptoms eased enough that I was able to doze off. When I woke up, I felt much better. I dozed again, and this time when I woke up I felt ok. I moved from the couch to my bed, and slept a deep sleep until morning. I’m spending the day resting, just like the doctor ordered. It’s another gorgeous day outside and a friend invited me to a barbecue, but I don’t mind missing it. I’m just happy to be feeling ok (though tired.) Today has been all about computer solitaire, movies, tv, and crochet. But tomorrow might just be about researching that doctor.

4 Comments | Expectations, Gastrointestinal, Healthcare, Kindness, Medication, Pain, Raves, Support, Symptoms | Tagged: , | Permalink
Posted by chronicrants

We won! Celebrating while sick

June 27, 2015

Yesterday was a big day here in the U.S. The Supreme Court of the United States (SCOTUS) issued a ruling that makes same-sex marriages legal throughout the country!!!!!

Are you done dancing your jig yet? Ok, let’s continue. This is huge news. SCOTUS also issued a big ruling for health

Equal Marriage Celebration Rally

Equal Marriage Celebration Rally

insurance coverage in this country several days ago. That’s huge too, but it doesn’t have the same kind of emotional impact for me. There weren’t celebrations all over the country for that (at least, not as far as I know.) So today I’m writing about the equal marriage ruling.

This is a good thing for our entire country. Many of my heterosexual family members and friends are saying that, too. But as a bisexual woman, that feels very personal. I’m currently single. Maybe one day I’ll get married, and when I do, it might be to a man or it might be to a woman, but whoever I marry, that marriage will be recognized throughout the country!

I have many friends who woke up yesterday knowing that their marriages were only recognized in some states. A few hours later, those marriages were recognized in every state! This has a lot of legal, financial, and logistical implications. I won’t get into hospital visitation rights, adoption, travel, or taxes right now. And there’s still a lot of work to do to gain housing rights, end LGBT youth homelessness, end employment discrimination, etc. You can see a good partial list here. So yes, next week we need to continue to fight, but right now we need to celebrate!

I spent the morning on Facebook. I hated to be alone – I just wanted to hug someone! I was bouncing up and down in 11535803_10152997661181169_4394317502946977616_nmy chair, crying and laughing at the same time. I’d stop crying, then read something like “Love wins!” and start crying tears of joy all over again. We finally had marriage equality!

This wasn’t quite a surprise. I knew this ruling was coming. I was watching the SCOTUS blog, and was disappointed each day when they didn’t rule on this important case. I expected a win. But when it came, the emotions were shocking and overwhelming. I could hardly believe it! We won!

So there was no question I had to celebrate. A large group of organizations had gathered together to host a rally and a celebration on whatever evening the ruling was issued, so obviously it was going to be yesterday. But here’s the thing about adrenal problems: any stress is a problem. That includes good stress. As I told my dad a few weeks ago, winning the lottery right now could leave me bedridden. So while this was a fantastic day with glorious news, the emotional excitement of the morning at worn me out. I could feel the chest congestion, the difficulty breathing at times, the roughness in my throat. My body had started to rebel.

I debated. I debated a lot. I knew that going to the celebrations could have really bad results, but how could I not go? I was protesting at the State House here in Massachusetts in 2004 when the legislature tried to work around the Supreme Judicial Court’s ruling to make same-sex marriage legal in this state. I was there when they finally delivered the vote that would lead to the first marriages in May 2004. But in May 2004, I didn’t feel well enough to go to City Hall and see the first marriages taking place. I was there, though, in 2012 when we celebrated the SCOTUS ruling that invalidated DOMA, the Defense of Marriage Act. This meant that the federal government would recognized all same-sex marriages, an enormous victory! So even if your state didn’t recognize your marriage, the federal government would.

And here we were in 2015 and I wanted to celebrate. First things first, I sat on the tv with some knitting and a movie and I forced myself to relax. It was tough not to go online, but I knew I needed to calm my emotions. After I rested, I made a 6-27-2015 1-09-45 PMsimple plan: I would get takeout for dinner, then go to the first rally. I would skip the more boisterous celebrations. As much as I wanted to go to them, I knew it would be more than I could handle. And if at any point on the way to the rally it felt like too much, I would come home, because celebrating on my own, or on the phone with loved ones, or any other way, would be good enough. It wasn’t my first choice, but it was the right choice.

In the end, I made it to the rally. Where I once saw opponents holding truly hateful posters, I now saw waving rainbow flags. There was a huge rainbow flag on the gate to the State House! I almost cried all over again. I heard amazing speeches, saw the cheers, and felt fantastic, though tired. So I found a place to sit. I didn’t cheer out loud, only in my head, and I took it easy. It was a necessary compromise, and one that I don’t regret at all.

I can’t begin to explain how meaningful yesterday’s decision was to me. Everything I write here is woefully inadequate. But the energy yesterday was perfect. We all understood each other. Strangers hugged and cheered together. I hugged my friends, simply saying, “Can you believe it?” and “What a day!” and we all understood. No explanations were necessary.

And now, as I type this, there is a rainbow stripe at the top of my screen, because apparently WordPress is in on the celebration. My Facebook feed is filled with celebratory notes, excited words, memes, articles, videos. Profile pictures are rainbow-colored or bi-colored (I went with bi colors.) My straight friends and family are celebrating just as much as the queer ones. Just as it should be. Because yesterday, we all won. And in my own way, I got to celebrate that, despite my illness.

2 Comments | Fatigue, Frustration, Isolation, Limitations, Medication, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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