Why I’m against the way we dispense the birth control pill

July 31, 2013

I was put on “the Pill” the week I turned 18. I wasn’t put on it for birth control purposes, but because my previously-heavy period had gotten so bad that I passed out from the loss of blood. The doctors figured this would fix that problem.

Birth control pills

What it did was mask the problem. Once I was on birth control pills (BCPs), I could no longer have accurate hormone tests run. The specialist thought I had PCOS (polycystic ovary syndrome) but it would be another 7 years before I found out he was right. In the meantime, I just dutifully took the Pill every day, as instructed, and assumed I wouldn’t get pregnant and that everything was under control. My primary care physician (PCP) du jour always prescribed it.

A friend of mine was suffering from depression for a long time. She tried changing all sorts of things about her life. She got a new job, tried a new diet, saw therapists, but was still depressed. I saw her a few months ago and the transformation was incredible! She was the happy, upbeat person I remembered from so many years ago! She was dealing with some truly horrible circumstances at home, and yet she seemed happier than I had seen her in 10 years. What changed? She went off the Pill. She said the change happened quickly. She’s no longer in therapy. She’s just avoiding birth control pills. Too bad none of her doctors thought to try that. Apparently, it never occurred to any of them.

A friend of mine found out the hard way that because of a medical condition, birth control pills won’t prevent pregnancy for her. She found when she got pregnant!

I now take a half of a BCP every day. I do this not for birth control, but because I need the boost in my estrogen levels. This is how my endocrinologist prescribes it.

Hormones are a tricky thing. Mess them up, and you could be in serious trouble. I know this from experience and from what I’ve witnessed. So why are PCPs prescribing hormones? Why aren’t women being sent to endocrinologists? Now there’s even talk about making BCPs available over the counter, without prescription!

Let me be clear. I am very much FOR giving women better birth control options. I think that making BCPs widely available is a good thing, but it needs to be done intelligently. Women should receive free visits with endocrinologists. Only endos should be allowed to prescribe BCPs. Endos should be well-versed in the possible side-effects of BCPs. When I got horrible mood swings once a month, when I felt horribly depressed and wanted to cry for no reason, my endo knew to take me off the Pill, let my body settle down, then start me on something else. My PCP didn’t know to do that. After women get these free visits, then BCPs should be available at the local pharmacy free of charge. I strongly believe this.

On the other hand, I do not want to see women getting the Pill without seeing a doctor. This is an unpopular view among my very liberal social crowd, but having more experience with medical issues, I am very ready to confidently take this stand. There are just too many ways it could go wrong. There are women for whom BCPs won’t work as effective birth control, and many for whom it can have horrible side effects. We call it “the Pill” and yet there are many different formulas. Should I take an estrogen-based one or a progesterone-based one? I like the idea of only getting my period 4 times per year, but will that one work for me? I could ask the pharmacist, but what will they know? They have no idea what my hormone levels are. No, women need to see endocrinologists who know which tests to run, how to interpret them, which medications to prescribe, and how to handle the side effects.

Our bodies are too important to just hope that it all works out.

And by the way, if providing free birth control is so important, where are the free condoms? I don’t want to get pregnant, but BCPs won’t work for me, so I need something else (assuming I’m even fertile, but that’s a topic for another day.) Plus, I don’t want to get STIs, either! Condoms should be distributed at doctors’ offices and at pharmacies, free of charge. Those things are expensive! Let’s make it easier for everyone to avoid unwanted pregnancies and STIs.

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Inexcusable insurance stress

July 29, 2013

For a while now I’ve been on MassHealth. That’s the Massachusetts version of Medicaid. If you don’t live in the U.S., Medicaid is health insurance for the poor and the disabled. It’s partially funded by the federal government but it’s administered by the states. This means that the type of coverage you have, and if you’re even eligible, is based on where you live. Ridiculous, right? Thankfully, I live in Massachusetts, where I am eligible for MassHealth. In other states I wouldn’t have been able to get it.

Of course, that was before. Now I’ve won my long term disability appeal, so I’m getting my old health insurance reinstated. You’d think that was a good thing, right? Wrong!

Obviously my old insurance costs a lot more than MassHealth. I was on MassHealth not as someone with a disability (don’t get me started on that!) but as someone of low (in my case, nonexistent) income. So I didn’t pay premiums or copays, and I paid only tiny amounts for prescriptions. And my old insurance is used by more doctors, so in theory that’s good. But here’s the problem: referrals.

In Massachusetts, most health insurance plans are HMO. That stands for Health Maintenance Organization, but as far as I can tell their just trying to maintain their balance sheets, not our health. HMOs require that all doctor visits by approved by the patient’s primary care physician (PCP). If I want the insurance to cover any appointment with any specialist (except for eye care, for some reason) then I must get a “referral” from my PCP. This sounds good, until you consider the reality:

  • Many PCPs want to discuss each situation, so that means time, effort, and money (yes, we pay to see PCPs aside from yearly checkups) for each discussion.
  • The PCP can say no because they don’t think you need to see that specialist. That’s one of the reasons it took eleven years for me to be diagnosed.
  • The PCP can say no because they’d rather you see another doctor. Usually they want you to see one within their own hospital network.

I did my research. I asked around. I figured out exactly who I should see. Sadly, they took my old insurance but not MassHealth. I waited many, many months. Then, finally, they started taking MassHealth! I got the first appointment I could, for this Thursday. You see, with MassHealth, specialist referrals aren’t necessary – I can see whoever I want as long as they take my insurance! What a novel idea!

But here’s the thing: I can only use MassHealth as long as I don’t have access to another health insurance. But now that I’ve won the disability insurance case and I’m getting my old health insurance back, I’m going to lose MassHealth. Sadly, the changeover is due to happen on Wednesday. Yes, just ONE DAY before my big appointment! So after waiting for about a year to see this doctor, it all comes down to needing a referral from my PCP.

I called my PCP’s office today. They said they’d run it by her, but told me she usually doesn’t refer to anyone outside of her hospital network. Now, I’m completely willing to leave her practice. In fact, I plan to leave it anyway. But there’s no way I’ll be set up with someone else by Wednesday. That just isn’t possible, especially because no PCP gives a referral before having a first meeting with a patient. So now I’m worried that I’ll miss out on my big appointment and that I’ll have to put it off even longer, all because my PCP may not give me the referral.

The inexcusable part? She wouldn’t withhold the referral because the doctor I want to see is the wrong specialist for my condition or because he has a bad reputation. She would withhold it only because she prefers to have her patients seen within her hospital network. There are advantages to that, of course. She knows the physicians, the medical records are all within the same system, etc. But it is also very limiting. I’ve researched those doctors and they don’t do the treatment I want. The treatment I want is less common, but by no means experimental or unconventional.

I should be confidently awaiting my big appointment, looking forward to new treatment possibilities. Instead, I feel stress that it may not happen. Is this the medical system we deserve? How have we let it deteriorate to this point. This is simply not acceptable.


Energy work-arounds for a social life

July 26, 2013

Yesterday I had some friends over to my place. We all have chronic health issues, so we all understand how hard it is to do these get-togethers. Beforehand, talking on the phone, S mentioned how great it is that I had the energy to organize this. I pointed out that all I did to “organize” was send a few emails, and that by having it at my place, I didn’t need to expend the energy to go anywhere. See, she and the others thought I was being generous by offering to host, but really, I was saving up my energy by having them here. She laughed and appreciated my “sneakiness.”

Of course, this only works to a certain extent. I was still running around, opening and closing windows to adjust the temperature, getting food and water for people, cleaning up spilled food (I do love my dustbuster!) and generally trying to be a good hostess. By the end I was exhausted, despite having rested most of the previous day, and so I spent all day today in my apartment resting. It has only been in the last hour that I have begun to feel a bit less run down.

I was also resting today because I am going out tomorrow. Because of the weather, I wanted to be indoors. The friend I’m going out with suggested a few possibilities. I chose a small museum for which I can gain free admission through an old job perk. She’s thrilled to go, and I can save both money and energy. I’ve been there many times, so I know that it’s easy to navigate with lots of comfortable seating throughout the place, a great elevator, and small manageable rooms. Luckily, they change exhibits often, so it’ll still feel like a new experience for me. My friend is driving, so that saves me energy too. And with my handicapped parking placard, we should (I hope!) be able to park close to the entrance. She will buy food at the cafeteria and I will bring my own so that we can eat together there.

I have no plans for the following day, so if I’m tired then I’ll just stay home and rest.

This isn’t perfect, and I’m far from my energy goals, but it’s a start. By resting, hosting, and planning shorter activities, I can at least have a bit of a social life. It may not be the social life I used to have or the one I want to have, but I’m still incredibly grateful for every bit of it.

How do you manage your energy limitations? What do you do to maintain a social life? Please share any ideas you have!


Incredible what 2 years can bring

July 24, 2013

The other day I wrote what has so far been my  most popular post. I felt inspired, so I wrote it. And then I went on with my day. But that night, just before bed, I looked at my calendar and saw the note I had made for myself a while back: it was the 2 year anniversary of this blog!

Anniversary

I feel bad, like I forgot a friend’s birthday. This blog has been so helpful for me, and I forgot its anniversary! It got me thinking, too, about how much has changed since I started writing this.

Two years ago I was just starting to feel much worse, which in hindsight is probably why I started this blog when I did. I wrote every single day for months, until my energy waned and I was forced to cut back. Still, even now it’s rare for me to have a day that I don’t think about what to write here. I have so many ideas, so many posts composed in my mind, and I hope that one day I can type them all out.

Two years ago I was typing into emptiness. My mom would sometimes read my blog, but that was about it. Now I have Subscribingdozens of readers on my mailing list, many more who follow me through twitter, and probably more I don’t know about who use Feedly, Digg, or some other reader. I get comments, which mean so much to me. It’s fantastic to know that people enjoy, are touched, or feel comforted by this blog. I want so much to reach out, and this my way of doing it.

Two years ago I thought I communicated well about my illnesses. Now I know better. As I write about things I often don’t even think to discuss, I realize how much I censor, whether intentionally or not. When I question if I should write about something, I realize that if I can’t be open about it here, in relative anonymity, then I must be pretty closed in real life. And when people comment on certain posts to say how rare it is to have these discussions, I remember that I’m not the only one with this problem.

Two years ago I was working full time. I knew my days of working full time were limited, but I expected to count them in years, not weeks. Now I have been out of work for almost as long as this blog has been around. I didn’t immediately return as I had hoped, and I’ve been coping with that. I don’t know if I will return to work some day. I hope that I will. But I’m trying to accept the uncertainty of it all.

Two years ago I thought I knew what was causing the worst of my health problems. Now, through a lot of research, I’ve found multiple other possible causes. I’ve discovered ways that I’ve been improperly treated. I have learned about new tests that need to be run. I have looked for new practitioners to see, including “non-traditional” ones.

Two years ago I thought I could never make “drastic” changes to my diet. Now I’ve redefined “drastic” because the changes are so worthwhile that I no longer think of them as being difficult. Food doesn’t matter. Health matters. Food is a means to an end for me, so I’ll do whatever it takes to make sure my food isn’t making me sick.

Two years ago I needed to vent. I got frustrated by so many health-related issues. My family and friends tried to understand, but they just didn’t get it. Now I have you. You understand. Sometimes things happen that suck and it helps to commiserate with people who’ve been through it themselves. Insensitive comments and rude actions need to be changed, but we also need to deal with them ourselves on a case-by-case basis. You’ve helped me do that. This blog has been more cathartic than I ever would have imagined when I started writing it.

So thank you for two wonderful years. It’s been a wonderful journey so far and I’m looking forward to seeing it continue.

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Edit: I forgot to mention that this is my 357th post here. In case you were wondering (I was, which is why I went back to look it up.)


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!!!


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