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!

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!

The eny, meeny, miny, moe method of choosing a treatment

August 9, 2013

When a doctor presents multiple treatment options, my favorite question to ask is, “If I were your

Too many pills!

Too many pills!

sister/daughter/best friend, what would you suggest I do?” This usually makes them stop and think about things in a slightly different way. I preface it by saying that I know it’s ultimately my own decision and I won’t hold them to whatever they say. This has produced some interesting responses over the years.

Right now, though, that isn’t working. Right now I’m choosing among treatments in different specialties, so there’s no one doctor (that I know of) who’s familiar with all of them. I did ask the hematologist this question yesterday, which is how I decided to do iron infusions. But maybe I shouldn’t? Another doctor prescribed hydrocortisone (HC) for my adrenal insufficiency but my naturopath thinks I should keep taking Isocort. That doc isn’t familiar with Isocort. But then, I’ve also received a new thyroid-related prescription, NDT. I can’t do all of these at once, and maybe I shouldn’t do all of them at all!

It’s generally agreed that the thyroid can’t heal until the adrenals are properly supported, so if I’m going to do the HC then I need to do that before the NDT. Some say NDT won’t work if the patient is iron-deficient, so I guess I’d have to do that first. But again, that’s if I do these treatments at all. They all have risks of side effects. What if I do the iron infusions first and have some bad effect and it takes me a long time to recover, and that makes me put off the HC and NDT, which are both promising? Of course, the HC has lots of potential side effects that I’d really rather avoid, too.

It’s overwhelming. This is my body. This is my health. This is my life. I don’t want to fuck around here. It’s too important to just randomly guess. And yet, sometimes I feel like that’s all I’m doing anyway. Right now I’m looking at three new treatments. Those are in addition to my current supplements and my complicated diet. Maybe one or more of them will work. Maybe they’ll make me better. Maybe they’ll make me worse. But I have to try, right? Yes, I have to at least try.

Must I educate everyone?

August 5, 2013

I went to a party the other night. (As a side note, YAY! I got out of the house and went to a party!) I know the hosts through a former job, and I had met a lot of the other guests through them and through that same job. I hadn’t seen them in years, so while at a normal party one or two people may ask, “What do you do?” at this party everyone asked. I hate that question, but it’s hard to avoid. I mentioned to one guy that I was unemployed. He said he wished he could get that gig. I was about to respond, “Yeah, it’s a great gig except for the lack of any income!” and just laugh it off, but our host overheard and mentioned that I was out on disability.

So here’s the problem: he shouldn’t have said that. I didn’t mind, but in general, it should be up to the person in question to disclose their disability status or not. It’s no one else’s place to do that. So I feel like I should say something so that he knows and won’t do it to anyone else. After all, I don’t mind, but there’s a good chance that someone else will. My guess is that he was trying to help me out but clearing things up, but there many times and many people where I don’t want it mentioned. After all, this was a party. I didn’t want to discuss my health – I wanted to have fun!

The thing is, I’m tired of educating everyone. Yes, I’d like to help him avoid offending someone else, or making someone else uncomfortable, but do I need to do that? I mean, it’s not my job to educate everyone, right? And it’s exhausting to be doing that constantly. I like to think of myself as a health activist, but it doesn’t have to be 24/7. At some point, enough is enough, and I think I just hit the point where I draw the line.

I like to educate others. Really, I do. I help whenever I can. This weekend I offered advice to parents whose teenager recently came out as gay and is having a hard time (I’m bi.) Today I’m helping someone newly dealing with chronic pain figure out the support services that exist in our area. But must I always correct honest mistakes? Maybe not. Maybe I’ll just let this one slide.

And yet, I feel guilty. So maybe I’ll say something after all….?

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