Finding health solutions outside the doctor’s office

August 14, 2013

This month’s blog carnival topic over at Patients for a Moment really caught my attention. It’s being hosted by Getting Closer to Myself – go check it out!

There are a few questions I could have answered, and I’m choosing this one:

How has social media impacted your illness experience?

Anyone who has been following this blog knows that I only recently began to figure out what’s causing my various symptoms. But do you know how I’ve been finding answers? It sure wasn’t at the doctors’ offices! They were all pointing fingers at each other, saying it was someone else’s specialty and not offering me any answers. The real journey started with a book.

I was bored while all of my friends were at work, so I went to the library. I thought I’d check out the books about one of my symptoms because it had been a long time since I’d done that, and while I was perusing the shelves, a title caught my eye about hypothyroid symptoms. I grabbed the book and immediately started reading. That book led to another, and those led to web sites which connected me to Facebook groups. Suddenly I found an entire community of hypothyroid patients online, mostly on Facebook and Twitter and in other places, too. They were dealing with hypothyroid and a lot of the accompanying issues that I also face, like adrenal fatigue.

Being ill can be isolating in the predictable ways: spending days at a time alone at home, not working, and having to miss social events are of course difficult. But the thing that many people don’t realize is that it’s also isolating to be sick and not know why, which symptoms are attributable to which diseases, which symptoms are relevant and which aren’t, or what to do about it all. This can make a person feel very alone, because it seems that no one else understands. Finding books, blogs, web sites, Facebook groups, and Twitter chats of people going through the same thing makes me feel a lot less alone. But they’ve also given me hope because, for the first time in many years, I have treatment routes to explore! In fact, if it wasn’t for the Chronic Babe online support group (which sadly no longer exists) I would have never begun seeing the naturopath who cured my IBS and who has helped me in so many other ways over the past year.

Let’s face it, social media is far from perfect. Finding the right groups and accurate information can feel like looking for a needle in a haystack, but it’s possible. We have to watch out for scams and inaccurate information. There are still doubters. But for me, social media has been incredible. It has given me a community to turn to, answers to my questions, and the hope that I could improve. I can’t wait to see what happens with it next!

Leave a Comment » | Educating, Expectations, Healthcare, Isolation, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

When or if I get better?

August 13, 2013

I will never be completely healthy. I accepted that reality a long time ago, and I’m ok with it. Please understand that I’m not happy about it, but I am ok with it. There’s a difference. The thing is, my health took a real dive a couple of years ago, right around the time I started this blog. In hindsight, that’s probably why I started writing it when I did, but at the time I didn’t realize what was beginning; I thought it was just another temporary flare.

So now when I talk about getting “better” I’m not referring to being 100% healthy. I’m just talking about getting back to where I was a few years ago. I’m talking about being well enough to work and date and travel and go out with friends. I’m talking about being able to do laundry and cook and leave the house all in the same day.

For the last two years or so, I’ve been referring to an optimistic future of that sort as “if I get better.” I knew it might not happen. I wasn’t trying to be pessimistic – after all, I was still speaking of it as a possibility. I hadn’t ruled out that it could happen, I just wasn’t so sure. So I said “if” a lot. And then today I caught myself saying, “when I get better…” I immediately stopped and correctly myself to “if” but it had already happened. The “when” was out there, hanging in the air.

I’ve been more optimistic lately. I’ve finally gotten to see two excellent doctors who I’ve been waiting a long time to see. I have several different treatment methods I’ll be starting soon, and any one of them, or possibly all of them, could really help me. I’ve been feeling better for a few weeks, too. The improvement is quite noticeable. Sure, I still can’t do everything I want to do. Yesterday I did laundry, and then had to choose between grocery shopping and seeing friends because I still couldn’t do all three in the same day. (Note: I chose to see friends. Until recently I wouldn’t have made that choice, but I felt well enough to know I could manage to get groceries today, which I did.) This improvement could be temporary or it could be just the beginning of further improvements. I don’t know. I can’t know. But I can hope. And for the first time in a very long time, I do have hope.

So maybe I’ll get better. Maybe I won’t. But the hope is enough to make me switch from thinking about “if” to “when.” And when I get better, boy will I celebrate!

6 Comments | Expectations, Fatigue, Limitations, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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

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