In the war of Brain vs. Body: body always wins

August 3, 2013

I just had to correct this post title. I wrote “brain always wins” by mistake. Wishful thinking.

Yesterday I went clothes shopping. Thanks to steroids and gluten-free diets and all sorts of other stuff, my weight

Yesterday's cause of today's pain

Yesterday’s cause of today’s pain

has fluctuated a lot. Two winters ago I was a size 14. Now I’m a size 6. Last year I muddled through. This year I had to give in and I managed to buy two pairs of jeans and a top. But I paid a price beyond dollars.

My mom came along. She’s a lot of fun and great company, so I was thrilled to have her with me. She’s also really helpful. She handles hangers and zippers and other difficult stuff. Even so, by the end, my body had had it. Today I’m still suffering for it. I’m in a lot of pain and I’m really tired (though not as tired as previous trips, so I think my supplements are really working!) It doesn’t feel good, but I know from experience there’s nothing at all I can do except give in to my body and rest, so that’s what I’ve been doing.

The other day I saw a promising new doctor. And I finally got the check from the insurance company. It was a good day! Then the next day, a friend won her own difficult insurance battle, finally getting coverage for her son. We want to celebrate, which for us means hanging out to talk about how wonderful it is! We may include desserts if we can find something we can both eat. It’s simple, but effective. So she invited me over to her place. She even offered me a gluten-free dinner. It sounded great, but I was still tired and in pain. I told her I’d get back to her.

What was I waiting for? Did I think the pain would go away in half an hour? I’ve had this pain for many, many years, and I know it doesn’t change that fast. How about the exhaustion? That’s newer, but I still know better. No, this was a case of wishful thinking. I wanted to go to her place, but I knew I probably couldn’t. I wanted to feel better, even though it was incredibly unlikely. My brain was ready to jump in the car and drive the short distance to her place. (She lives so close that she walks it, but of course I can’t do that.) My brain was already figuring out what time I should leave when my body gave me another shot of pain as a reminder that I just wasn’t going anywhere. I want to, but that doesn’t mean it will happen.

I’m trying to remain positive. I will see her another day. I hadn’t planned to go out tonight anyway, and this was last-minute. I could have just as easily turned her down because I had other plans or a date (another bit of wishful thinking.) Ok, other plans would be a lot better than pain and exhaustion, but you know what I mean. Watching a movie and eating popcorn isn’t the worst thing. Or maybe she can come to my place? I haven’t heard back yet. The point is, it is what it is and I can’t change it. I just have to accept it. Doesn’t that sound so zen and mature of me? I wish I always felt this way. Some days I get mad or sad. Sometimes I scream or cry. But today I’m handling it ok.

Because the thing is, I should have realized it the second she invited me over: in the war of Brain vs. Body, Body always wins. Always. Every time. So I might as well just accept it today.

I’ll accept it today, but tomorrow I’ll go back to fighting it with new treatments and more research!

4 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

7 Comments | Educating, Frustration, Healthcare, Medication, Politics, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

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.

Leave a Comment » | Expectations, Frustration, Healthcare, Medication, Politics, Rants | Permalink
Posted by chronicrants

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!

2 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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