The myth of a miracle cure

July 21, 2013

Warning: This is a bit negative, even for me, so make sure you’re feeling positive and upbeat before you read it. And afterwards, go look at pictures of cute puppies or something. A picture of my favorite cutie is here, just for some balance.Pooch

I just read a book where a little boy has a fatal, degenerative disease. It was fiction, and the disease was made up, so I knew, based on the type of book, that the disease would be cured just before it killed him. And of course, it was.

My health problems are not fatal, but they’re degenerative. And there’s no miracle cure about to come fix me. The problem is, I don’t think most people understand that.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after. It happens practically over night. In fact, not only does the disease stop getting worse, but they even manage to improve the person’s health, as in the novel I just read, so that they get to be completely healthy. If only, right?

After so much exposure of this sort, people start to think that this is how it works in the real world. Those of us who actually have these diseases know better, though. We follow all the research on our disease. We know who’s working on it and who isn’t. We know how much money is being spent on our disease versus others. We know if the focus is on cures or on treatments or maybe, if we’re really lucky, on both. We know if any work is being done on preventative measures or on diagnostic techniques. Some of us follow the research in great detail and others only have a vague awareness, but we all know. We know, on some level, if a promising cure or treatment is in the works or if it’s something we’ll be lucky to see 40 years from now.

We also know that even if a cure or treatment is close, that doesn’t mean it’s accessible to us. If a cure was found today, how long would it take to reach its intended target? Well, the answer varies based on so many factors, but the answer is always measured in years, not in days like in the movies. Even if you manage to get into a human trial of the treatment, and even if you manage to get the drug instead of a placebo, human trials don’t happen over night. There are so many stages that come first, including animal trials. FDA approval is needed in the U.S. And there are great risks to taking an untested drug. You know how sometimes you take a drug knowing there’s a slight chance, or even a great chance, of a certain side effect? Well who do you think gets those side effects first? Yep, the testers. It’s definitely risky.

And sometimes it’s difficult or even impossible to get into those trials. If you have to wait for the drug to come to market, it can take so much longer. But wait, don’t forget the costs! The pharmaceutical companies just spent a whole lot of money developing whatever you’re about to take and they want to get some of that money back. In the books and movies you just get the drug. There’s insurance or a rich uncle or some compassionate benefactor. Too bad it isn’t always like that in the real world. If you don’t happen to have insurance to cover the drug (and it often doesn’t cover the new ones) and if you don’t have the money to pay for it (which could easily be tens of thousands of dollars – no that isn’t an exaggeration) then you’re just out of luck. Sorry. Too bad. Go home.

So the next time someone says, “Isn’t there a pill you can take?” send them over here. Maybe this will open their eyes just a bit. There isn’t a cure, or even a treatment, for every illness. Oh, how I wish there were. Some are getting closer, but people need to trust us when we tell them if there’s a treatment coming or not. We’re paying attention. We know these things. We’re not about to be surprised over night. If and when a treatment comes along, we’ll know about it long before we’re able to take it, and we’ll be counting down the years.

Fuck the shoulds

July 17, 2013

I don’t get this mad very often, but right now I’m completely pissed off. I want to take all of the “shoulds” and get rid of them forever.

Let’s look at a few: I should handle this problem better. I should be smarter/wiser in this situation. I should be more patient. I shouldn’t let myself feel sick. I should have more self control. I should be a better friend/sibling/parent/worker by nature. I should know how to fix this. I should I should I should….

Ok, be honest, how many of these have you thought to your self? I’m betting at least one, but probably a lot more, not to mention many others I didn’t write out. Some of these are internal shoulds (we burden ourselves with these assumptions) and others are external (other people push them on us.) It’s important to look at the two separately, and I may do that on another day, but today I’m concerned that they exist at all.

Let’s get on the same page here: there are no shoulds in life. We are who we are. Well ok, there are some shoulds: We should all try to be decent human beings who care for one another and try not to hurt each other. But as for the rest, it’s complete bullshit. Giving birth doesn’t magically turn someone into a knowledgeable parent. Getting a job doesn’t magically make someone a great worker. Being sick doesn’t magically make someone strong enough to handle it. Just just not how life works.

I was recently talking with other folks with chronic illnesses and I noticed the same themes: people thought they should be able to handle their problems better just because it’s assumed of them. They felt they’d failed because they needed help. For some reason, not being able to do absolutely everything was considered a failure. Why is this? We’re only human. We ask for help with all sorts of things. When my friends’ roof leaked, they knew they couldn’t fix it themselves so they hired someone to do that. Is that so bad? When my grandfather has computer problems, he calls me to ask for help. What’s wrong with that? And if I feel too ill to get to the pharmacy to pick up a prescription then I’ll ask a friend to do it for me, and no one better dare suggest that’s any sort of weakness on my part. In fact, I think it’s a strength. It’s hard for many of us to ask for help, and knowing our limitations and respecting them enough to ask for help is a sign of how strong we are, not how weak.

A friend asked me to help her out with her kids. She was alone while their dad was out of town on business and she felt overwhelmed. Like me, she isn’t good at asking for help, so when I saw her message I knew it was serious. I was relieved that I was having a “good” day and was able to go over to help out. Sure enough, she was at her wit’s end. She was overwhelmed and exhausted. Having someone else there to watch the kids, give them food, keep them from crying, and all that other good stuff really helped her out. But afterwards, she talk about how she felt she wasn’t a good mother. Why? Because she felt she should be more patient. She should never get frustrated with her kids. She should never lose her temper. I pointed out that being a mom doesn’t make her less human. Of course she’s still going to lose her patience! There’s nothing wrong with that, as long as she keeps it within reason and asks for help when she needs it, like she did that day. But the part that pisses me off about this is that I’ve heard this same thing from so many friends who are moms! They all feel that they should be better, that simply because they have two X chromosomes and some kids, they’re supposed to magically be perfect parents. And they’re so embarrassed that they’re not perfect that they don’t talk about it, so they don’t realize it’s happening to everyone else, too. I think they tell me because I’m not a parent, so I can’t judge. But it also means I can’t reassure them.

The same is true for chronically ill folks. We hear the stories about the one-legged marathon runner or the person with MS hiking a canyon, and we figure we should  be able to at least get to the grocery store. We don’t talk to each other so we don’t realize that just about all of us are going through the same thing. We all have limitations. We all have obstacles we overcomes and obstacles we don’t. There are no shoulds in life, just life itself. We all have limitations, and expecting them to disappear because they should won’t help at all.

It’s time we all talk to each other. Let’s open up the discussion. We’re all doing the best we can and that’s fucking awesome. Let’s not diminish that. Let’s celebrate it!

I won I won I won!!!

July 16, 2013

There’s a great moment in an old episode of “Mad About You.” Jamie walks into the apartment and tells her husband that she won the big account she was working on. Then she throws down everything her arms and jumps up and down wildly, Yay!waving her arms, and screaming, “I won! I won! I won!” That’s been going through my head a lot lately.

I applied for long term disability insurance in the spring of 2012 and FINALLY last week I got a resolution: I WON! Well, ok, I know “winning” isn’t the most accurate term, but after being denied and appealing and having the appeal delayed over and over and over again, it sure feels like a major WIN.

I’ve been alternating between jumping up and down (well, figuratively anyway) and wondering if maybe I dreamed it all. Did I really win? Is it actually over? Did I really speak to my lawyer or am I just imagining it? My family and friends have been amazingly supportive through this whole ridiculous mess and this is no Boston sunshinedifferent: I’ve gotten hugs, tweets, emails, and phone calls of joy. They are so happy for me. But me, I’m still in disbelief. Could it really be over?

Of course, it’s not really over. I have yet to receive the payment for money owed. I still have to get paperwork assuring me of the ongoing monthly payments. My lawyer needs to be paid. I need to get my old health insurance back, hopefully before my next medical appointment in two weeks. Once I have the health insurance, I need to start applying for reimbursements for prescriptions not covered by medicaid. There’s a whole long list of things I need to do.

And those don’t include the worst of all: preparing for the next stage. My Social Security application is still pending, but that’s not what worries me. What worries me is that the LTD process dragged out for so long, that in a few months I will need to start the application process for the next stage of coverage! After so many months of effort and anxiety, I really want to rest and focus on my health. I don’t want the distraction of more of this bullshit.

So for now I’m trying to just focus on the win. I’m trying to remember that I succeeded. I’m trying to remember that even though I got only what I deserved (actually, less, when you consider the many hours and huge amounts of money spent on lawyers, medical records, medical visits, etc.) this is a good thing. There is more to be done, but that can wait. It will still be there next week. Right now, I need to (figuratively) jump in the air and shout: I WON I WON I WON!!!

And then I woke up

July 14, 2013

I’ve been feeling relatively good lately. A couple supplement changes have resulted in more energy, and the recent break in heat and humidity have allowed me to go outside, which greatly helps my mental and emotional outlooks. It’s been really fantastic.

That’s why I was so happy yesterday. I managed to go to a potluck picnic. It was cool enough that I felt ok being outside despite the humidity. I spent time with friends. I laughed and had fun. I was there for 3 hours, which felt like a long time. I wanted to see another friend afterwards but I was tired, so I went home and watched a movie. All in all, it was a great day and I was happy.

Then I woke up this morning and I felt lousy. My throat hurt, a sure sign that my thyroid was acting up, and I had that run down-dragged out feeling. I had gotten up to go to the bathroom around 5am, and that’s when my throat first started to hurt. Maybe it was the heat, maybe it was the lack of sleep, but my body wasn’t happy. When I woke up at 9:30, late even by my standards, it was worse. I wanted to go back to sleep. I just felt miserable.

I knew immediately that I’d be skipping the brunch I had been looking forward to attending. It was already late, I definitely didn’t feel up to rushing, or even moving at a medium speed. Plus, it would involve talking to a lot of people I don’t know, which would mean acting like I felt ok even though I didn’t. No way I’d be doing that. And then I though about my afternoon plans. I’d been feeling so good lately that I ambitiously made plans to do two things in one day. So much for that. I just hoped I could keep the afternoon plans! And what about my plans for tomorrow? That’s something I’ve really been looking forward to for a while, so I hope I don’t have to cancel! And later this week I’m supposed to do something with a friend, it’s our one and only chance, so if I cancel, we won’t be able to reschedule.

And then I took a step back. Yes, I feel horrible today. Yes, I could be getting sick and I could spend the next week in bed. But it’s also possible that this is a short-term reaction to something and that I’ll feel better tomorrow. Who knows? That’s one of the annoying-as-hell aspects to these kinds of illnesses: they’re entirely unpredictable.

So for now I’m waiting and hoping. I still haven’t decided if I’ll see my friends this afternoon, even though I’d have to leave my house in just 2 hours. They’ll understand if I can’t make it. I’m definitely skipping the brunch today. And I can decide on everything else later. I just wish I could go back and change that feeling I had when I woke up.

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