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

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.

Leave a Comment » | Decisions, Fatigue, Frustration, Healthcare, Medication, Pain, Rants, Symptoms | 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

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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