Dear doctor: Those symptoms you ignored were signs of a real problem

January 7, 2015

I don’t expect every doctor to know everything there is to know about medicine and health. I don’t even expect them to know everything there is to know in their own specialty. But when I present the same symptom to many doctors, and it’s common enough to be written on one of those silly internet lists, shouldn’t at least ONE DOCTOR have known what was going on??? Or at the very least, they shouldn’t have brushed it off!

Back in my mid-20s my fingernails began to curve. Before that they were pretty typical nails, I think. Then suddenly, they curved downwards as they got longer. The first and middle fingers were the worst on each hand. I just cut them recently so I can’t take a photo today, but trust me on this; it was really noticeable.

I didn’t assume there was a major, life altering problem, but it definitely wasn’t normal, so I showed my doctor. He brushed it off, saying it was nothing. I showed my next doctor after him. Same response. I showed many doctors, both internists and specialists. Some said it was nothing. Others weren’t sure, but said I shouldn’t worry. Not a single one suggested that maybe it should be investigated. A friend said it could be a vitamin deficiency of some sort. My doctor didn’t agree. So what could I do about it? Looking things up online wasn’t so easy just a few short years ago, and I had bigger health problems to worry about.

I came across this short list, What Your Hands Can Reveal About Your Health, a few months ago, and I haven’t been able to forget about it. That’s because it was so clear about this problem that none of my doctors addressed:

Curved nails

Soft nails that curve likes spoons can be a sign of iron-deficiency anemia, says Dr.Leffell. The condition, called koilonychias, can be due to such malnutrition, gastrointestinal blood loss, worms, gastrointestinal malignancy, or celiac disease. See your internist who can check your iron levels.

Now, obviously my doctors screwed up in other ways. I had low ferritin levels for many years, but none of my doctors addressed it. It wasn’t until I sent myself to a hematologist that I finally received the iron infusions that got my levels up to where they should be. And I had symptoms of Celiac Disease for many years, but doctors kept telling me it was IBS, or IBS and reflux, or IBS and stress. Nothing improved until I put myself on a gluten-free diet. So really, the finger nails were just one more symptom that was ignored.

But why were they ignored?

I will never know why multiple doctors chose to brush off my concerns about very real symptoms of very real illnesses. I’ll never know if other patients were similarly dismissed. But I do know that an injustice was done.

I am so grateful that I took my health into my own hands. It’s not easy, and sometimes I forget to fight back, but I’m trying. And every time I come across another symptom that my doctors overlooked or brushed off, it’s a reminder that it is worth every bit of effort I expend to continue pursuing the treatments that I believe are best. From now on, I choose to see my curved fingernails as a reminder that I need to make my own decisions about what is relevant to my health. I won’t be brushed off again.

6 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Medication, Rants, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

What a difference a year can make

December 30, 2014

As I made plans for New Year’s Eve this week, I suddenly remembered last year. The difference is startling.

Last year, I didn’t want to go out. I had no exciting plans, but even if I’d had them, I probably would have skipped them. I was sad, anxious, and overwhelmed. My grandfather had just passed away. I was still reeling from the passing of my grandmother almost exactly one year earlier. My financial situation was precarious. My hearing for social security benefits was still a few weeks away. My long term disability claim was about to be reviewed and possibly denied. My health was lousy. I was trying so hard to get better and I just couldn’t seem to make the progress that I wanted to make. I had no desire to celebrate the end of such a crappy year, and I wasn’t filled with hope or anticipation for the coming year. I dreaded attending any sort of celebration with happy, optimistic people. So when friends invited me over to hang out, making it clear it would be an early night, that sounded perfect. We talked. We played board games. And when midnight rolled around I was at home in my pajamas, watching the fireworks alone on tv.

By January 2, life had resumed as normal, and I continued plodding along.

This year is difference. I’m not looking forward to some wild, crazy night. But then, even with perfect health I probably still wouldn’t be. I guess that’s what age does to you. I don’t feel the need to celebrate, but I also don’t mind it. Some friends want to get together for a low key evening of talking, drinking, eating, and playing board games (we all love Settlers of Catan) and that sounds just about right to me. We’ll all toast the new year in together, but we won’t stay out too long past midnight. 2 couples have young children who will wake them up early and the other person will get up early for bird watching the next morning. So even if I didn’t need to get to bed at a reasonable time, everyone else will probably be leaving by 1am anyway.

But it’s more than the logistics, of course. This year I saw such improvement. I recently lost another grandparent and that has been difficult, but his final weeks and days were not as horribly painful as the others’. I lost my long term disability insurance coverage but I gained social security. More than that, I no longer have to worry about either one. The lack of worry has had an enormous impact on the improvement of my health. On top of that, I have stable health insurance for the first time in years. With the ability to see doctors and try new treatments, and with the lack of stress, not to mention with another year of the previous treatments under my belt, I’ve seen some huge improvements in the last year. Sure, I still have big health problems, but they’re more manageable and I have more reason to be hopeful.

I still have health-related problems that I’m trying to figure out. I want to see some doctors that don’t take my insurance. Social security disability doesn’t come close to paying all of my bills. I’m still not sure what’s causing some symptoms. I’m still reacting badly to some medications. But overall, I feel better enough that I can be optimistic that I’ll figure out ways to handle all of those issues sooner or later.

It’s not perfect, but it’s better.

One year passes quickly, but it’s really a long time. 365 days. 52 weeks. 8760 hours. It’s going to pass no matter what, so the best we can do is hope that as it does, our lives will be good and our health will improve, or at least not get worse. Then we need to do all we can to make those hopes a reality.

I don’t know how I’ll be feeling 1 year from now. Maybe better. Maybe worse. Maybe the same. But I sure as hell hope I’m doing better. And I hope you are too.

As we welcome 2015 and those 8760 hours begin passing, I will be hoping that you and I all see some good times, some improvement in our health, and some ways to manage the difficulties we face.

Here’s to us.

7 Comments | Expectations, Healthcare, Isolation, Limitations, Milestones, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Choosing to stay home vs. being stuck at home

December 23, 2014

If you’re a spoonie, you probably know what it’s like to be stuck at home. And maybe you sometimes get to choose to stay home. They’re very different.

For most of the last few years, when I was home it was because I was stuck at home. If I felt up to going out, I did because I knew I had to take advantage of the limited opportunity. But lately I’ve been feeling a bit better and I’ve been choosing to stay home. I’d sort of forgotten what it was like. I’d had a lot of time at home before, but this is different, and I’m still learning the ways that it’s different.

When I’m stuck, I want to go out, or to at least have the option to go out. When I can choose, I often don’t want to go out and have to talk myself into taking a walk or running errands, just to get fresh air and exercise.

When I’m stuck, I’m often lonely. When I can choose, I appreciate the quiet solitude of being home alone.

When I’m stuck, I’m sad to miss out on social events. When I can choose, I feel less bad if I miss those events.

When I’m stuck, my apartment feels small and cramped. When I can choose, my home feels warm and cozy.

When I’m stuck, I’m bored and can’t do much beyond watch tv and read a bit. When I can choose, I often feel well enough to work on hobbies, cook, clean up the clutter, and also read and watch tv (not all on the same day, though.)

When I’m stuck, I feel sad. When I can choose, I feel content.

When I’m stuck, I’m very aware of the pain and fatigue. When I can choose, the pain and fatigue are obviously less, and feeling better allows me to mostly ignore the pain and fatigue that remain.

When I’m stuck, I spend a lot of time on social media, trying to connect with the outside world. When I can choose, I spend more time doing things on my own.

When I’m stuck, I think about the things I can’t do. When I can choose, I focus on the things that I can do.

When I’m stuck, I make plans for a future that seems remote and unlikely. When I can choose, I make plans (the same plans, by the way,) for a future that feels foreign but possible.

When I’m stuck, I go out every chance I get. When I can choose, sometimes I go out and sometimes I stay in.

When I’m stuck, having company is thrilling. When I can choose, sometimes company is nice and sometimes I’d rather stay home alone.

When I’m stuck, I am very aware of being stuck. When I can choose, I’m very aware that I have a choice. And I’m so incredibly grateful to have that choice.

7 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

How does blocking a handicapped parking space help those selfish people?

December 22, 2014

I’ve written several times about how annoyed I get when someone illegally parks in a handicapped parking space. It’s rude, inconsiderate, selfish, and inexcusable.

So you can imagine how I feel when I try to park in a handicapped space, only to be blocked not by a car, but by a Handicapped Parkingshopping cart. Yeah, I get pretty pissed.

Yesterday I went to a new grocery store. There were two carts in the handicapped space! Luckily they were to the side and I drive a small car, so I was able to fit into the extra-wide space. Still, it was so wrong! And yes, there have been times when I have had to drive past the space, because I don’t have the energy or I am in too much pain to get out of my car, walk over, move the cart, get back in my car, park, then continue with my errands. This time, I was with someone, and we each took one cart on our way into the store.

Then I came back to my car, only to find a new cart that someone had left between my car and the small island of dirt and grass! What the fuck?!?

There is absolutely no excuse for this! If you are able to walk as far as that space and put the cart between my car and the grass, then you could walk a few more feet to the cart return. Yes, there was a cart return, and it was just across from my car. And if there was no return, there would still be no excuse for leaving a shopping cart there. Leave it in a non-handicapped space. Or, you know, do the decent thing and bring it back to the store!

I try to the assume the best in people. I really do. But these are the things that make me cynical. These are the things that make me wonder how someone can be so unbelievably self-centered that they either don’t realize or don’t care that they are making things so much harder for someone who probably already has to exert a whole lot more effort to go to the grocery store.

I complained to a worker and asked him to tell the store manager. He said they were aware of the problem. Obviously, there’s nothing they can do. So I say we do something! When you see someone doing this, let them know how despicable they are being. Let’s shame them mercilessly. And maybe, if they are embarrassed enough, it might occur to them that the best way to avoid being shamed and embarrassed is to, you know, be a decent human being.

4 Comments | Educating, Frustration, Insensitive, Parking, Rants | Tagged: , , | Permalink
Posted by chronicrants

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