Am I doing enough?

December 15, 2015

A friend called me and was upset. She had just spent a while talking to a friend of a friend with the same diagnosis as her, but who was doing a lot better because she had done a lot more research and tried many more treatments. My friend felt like she wasn’t doing enough. I knew that feeling well. I’ve had it many times myself. Maybe you have, too?

I think it’s common to feel that way. After all, we’re taught that when we’re get sick we go to the doctor and get better, so when we don’t get better right away, we wonder if it’s our fault. Then we read about someone who was magically cured through their own research and we wonder why we haven’t done the same.

Of course, not every illness is easily cured by a doctor. And those magic cures are often individualized treatment plans that were figured out through years of research and trial and error. We see the results, but we don’t see the backstory. Meanwhile, we’re all in the middle of our own backstories.

The thing is, if you’re doing all that you can, that’s enough. It has to be. I know people with my same diagnoses who can not only work, but jog every day and go hiking. That’s great for them, but I can’t do those things and thinking I “should” isn’t helpful. In the same way, someone might be able to do a lot more research than I can. And that’s ok. Someone else can’t do as much as me, and that’s ok too.

About 4 years ago, I started to do my own research. It was hard. Damn hard. I was so fatigued that I could rarely read more than 5 pages at a time without falling asleep. The brain fog was so bad that I had to read each paragraph multiple times before I understood it. Often I read a few pages, fell asleep, woke up with the book on my lap, and had to reread what I’d just read because I’d forgotten it all. But I kept going because I was determined. It paid off, because it led to me doing so much better. Sounds like something everyone should measure up to, right?

What you didn’t see (because I’d only started this blog earlier that year) was the several years before that where I’d given up hope. You didn’t see the years, yes YEARS, that I hadn’t wanted to do any research at all and had resisted encouragement from others. You didn’t see how long it took me after doing the research to actually put any of it into practice. And yes it has helped, but I’m nowhere near “better.”

Would my health be better now if I hadn’t put off doing research for years? Maybe. Maybe not. A lot of what I found wasn’t available 5 years earlier. I wasn’t sick enough back then to be willing to try some less conventional approaches. And it doesn’t matter. Because I did what I felt ok with at the time.

I wasn’t ready to do the research then. And that’s ok. I was doing the best I could. Physically I put all I had into working, exercising and physical therapy, taking care of myself, and having just a bit of a social life. Emotionally, I didn’t have the capacity to do the research. And that’s ok. I did as much as I could. So it was enough.

Sooner or later, you’re going to feel like you’re not doing enough. When you do, remember that if you’re doing your best, that’s enough. One day your best might be hiking up a mountain. Another day your best will be brushing your hair. Whatever it is, it’s enough.

As for my friend, she’s feeling a bit better now. I told her everything I’m telling you now, and then some. I pointed out that the person she spoke to had had her symptoms for many more years than my friend had. She’d had more time to try things. She’d had more money available to try things. We don’t know how severe her symptoms were or weren’t. And I pointed out that my friend has recently tried several new things and is currently waiting to see if they work. She’s already seen some small improvement. Waiting isn’t fun or exciting or sexy, but it’s necessary. It’s nothing to feel bad about because it has to happen. The person she spoke to had a lot of time to try things out and wait to see what happened. There’s no point in my friend feeling bad because her “during” doesn’t compare to someone else’s “after.”

So what about you? Do you ever feel like you’re not doing enough? And when you do, how do you handle it? Please share your thoughts in the comments.


Which is worse: knowing or not knowing?

December 2, 2015

My surgery was just over a month ago and for me, the worst was not knowing what to expect. Not knowing if it would work out ok. Not knowing.

For me, that’s always the worst.

But I was talking to a friend yesterday and she said the opposite. She has a surgery coming up that she’s had before and for her, the worst is knowing what to expect. She knows just how bad it could be.

To know or not to know- That is definitely the question.

When I don’t know my imagination runs wild, and what I come up with is always worse than the reality.

But what if it wasn’t?

Which do you prefer? Do you want to know what to expect or would you rather not? When you see doctors, do you ask them for ever detail you can think of (like I do) or do you get only the most basic of information, preferring not to know in advance?


How many medical appointments have you had this year?

November 6, 2015

Every now and then I’ll talk to a friend who mentions a medical appointment like it’s an unusual thing. They’re going for their yearly checkup or they only go when they have a problem, which is rare. It’s hard for me to imagine that life. I try to remember back to a time when I only went to the doctor occasionally, but I think I was 10 at the time. And it made me wonder, just how many appointments do I have each year?

I had no desire to go through my calendar and count them all, so this is a bit rough. I did a search for “Dr.” in my google 11-6-2015 11-42-40 AMcalendar and for “PT” because that’s how I enter my physical therapy appointments. I searched my brain for any other entries that might have been entered differently (there are at least a few). I left out non-appointments, like stopping by a lab to get blood work done. Searching only in 2015, I came up with 42 appointments. 42!!!

If you have weekly appointments, this probably doesn’t sound like much. But if you see a doctor only once a year to refill your birth control prescription, this probably sounds like a huge number. And it is.

42 appointments is a lot. That’s 42 days I couldn’t schedule anything else. 42 times I had to plan my day around a medical appointment. 42 times I had to schlep down to an office, sit in a waiting room, talk to someone about my personal medical health. How many minutes, hours, days have been spent traveling to and from appointments, sitting in waiting rooms, waiting in offices, talking to people who may or may not be able to help me?

How much more time that isn’t included here was spent making appointments, rescheduling appointments, calling doctors, emailing doctors? How much time was spent tracking down medical records, taking notes, organizing notes, filling out release forms, sending records to other doctors?

How much time was spent thinking and worrying about these appointments?

The numbers are huge and discouraging. But I’m doing what I have to do to ensure the best health possible for myself.

What about you? How many appointments have you had this year? Take a guess, and put it in the comments. After all, there’s comfort in community.


Finding ways to handle stress

October 26, 2015

We all have our coping methods. Some are healthy, some less so. When I found out I needed to have surgery, I threw IMG_20150724_195633together a gluten-free chocolate cake mix, baked it, added on the frosting, and proceeded to eat just over half the cake in 4 days. Suffice it to say, that was one of my less healthy ways of dealing with stress.

I’m stressed out. My distrust of and anxiety around doctors and anything medical has been growing exponentially lately. It was a problem even before this surgery, but now it’s worse. It doesn’t help that the doctors didn’t handle this whole incident correctly to begin with. On top of that, my thyroid levels are off, not something you want as you head into surgery. And if that weren’t enough, my sleep doctor just emailed me about my most recent sleep study. I was so hopefully that maybe, finally, I’d get some consistently good sleep. At least! I was so excited! His exact words were, “Your breathing was a rhythmic mess. We have our work cut out….” No reassuring.2015-08-20 22.19.09

Sometimes I wish I drank. This is one of those times.

But I don’t. So I need to find another way. What always makes me happy? That’s easy: dogs! If you’ve been following this blog for a while, you’ve heard me mention my parents’ awesome Sheltie from time. Looks at these photos…. isn’t he adorable? And other dogs make me incredibly happy, too. I stopped by a local pet supply store the other day just to maybe see some dogs. The store doesn’t have dogs, but customers often bring theirs with them. I didn’t see any, and as I headed out of the store in defeat I saw him: a puppy! Petting that puppy cheered me up immensely.

So I did the only logical thing: I posted on Facebook and asked my friends to share cute dog photos and videos with me!

The outpouring has been fantastic. A lot of friends want to help me but they can’t because they’re too far away or because they have their own health problems, but this is something they can do. A few even posted photos to their own walls and tagged me, asking their friends to share their own photos, so their friends did, too! Every day there are more cute photos and videos. Some are my friends’ dogs, and some are random internet findings. I don’t care, they’re all wonderful!

And that’s why today, when I was messaging with a friend on Facebook about my current medical issues and feeling stressed out and overwhelmed and on the verge of tears, I suddenly found myself laughing at a video of a Shiba Inu digging in the sand that a friend had posted to my wall.

So now I’m asking you to do the same. Please share a link in the comments, tweet me at @CIRants or email msrants at gmail.com. I’ll gather up those photos and create a post of them to share with all of you!

So that’s how I’m handling stress this week. What about you? How do you handle impending stress?