Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.


When those horrible medical symptoms aren’t medical at all

November 14, 2015

There’s a tipping point. It’s the moment when you feel something odd in your body and just assume that it’s related to your chronic health condition. Before the tipping point you question what it could be. But after that point, you just assume.

Of course, sometimes it’s a medical problem that has nothing to do with a chronic illness, like an injury or the cold that’s been going around.

But sometimes it isn’t medical at all. And then don’t we feel a bit silly? It’s a good reminder, though, that not every odd bodily feeling is part of a chronic illness.

The other day I was really cold. My body doesn’t adjust to temperature changes well. I also have Raynaud’s, and my hands were very white with tinges of blue. I was starting to feel lethargic. For a while I wondered what I had done to stress my thyroid or adrenal glands. But eventually I noticed that my radiators were cold. I checked the temperature in my apartment and it had dropped. I emailed my landlord and, sure enough, there was a problem with the heat that they were working to fix. Huh. I was looking for thyroid and adrenal triggers and it was really a busted boiler. Oops!

Sometimes my vision gets blurry. I used to always worry about what could be causing it. All sorts of terrible scenarios would run through my head and I’d be very nervous. Now I know better and I immediately check the two most likely culprits: it’s always either a smudge on my glasses, or I forgot to switch my reading and distance glasses when I walked away from the computer. Oops!

What about you? Have you thought you were having some horrible symptoms only to find out that it was something completely benign and non-medical, like a smudge on my glasses? Please share in the comments! I think we could all use a little comic relief and the reminder that not all “symptoms” are medical.

Adjusting to my new-found support

November 13, 2015

We all know how it goes. You get sick and everyone steps up to help you. Then you stay sick, and people get busy with their own lives. It happens. I’m as guilty of it as anyone. And that’s why it feels so odd when the support is offered again.

Part of the problem, of course, is that I suck at asking for help. I should do it more. And part of the problem is that I would 2015-10-17 11.45.26be asking for help so often, my friends would get burned out. I get that. I can’t expect anyone to be visiting me every other week or helping with laundry regularly. But at the same time, I know that people forget, and that’s tough.

So when I had surgery a couple weeks ago, it was wonderful that so many friends stepped in to help and offer support. Suddenly there was an outpouring of good wishes, emails, and phone calls. I’ve gotten visits and thoughtful gifts (like a gift card for grocery delivery!) After so many years of poor health, this all feels a bit strange, but it’s far from the strangest part.

The strangest part is every time someone looks at my foot and comments on the cast. I don’t know how to respond when someone asks if I’m in pain or if I’m having a tough time. I won’t lie to you – this isn’t easy. But it’s not that bad, either. I’m stuck at home, but the truth is that I’m often stuck at home, this is just for a bit longer. It hurts, but very little compared to my normal daily pain, and a hell of a lot less than the original injury. I’m limited, but not so much worse than usual. I’m frustrated, but that’s nothing new. It stops me from doing things what want to do, but that’s like all other days. Yet people ask about it as if it’s so different.

The truth is, I feel better this week than I have in ages, thanks to the change in seasons and my forced increase in rest time.

In another month I’ll be back to “normal” and the extra emails, calls, and visits will have ended. For now, I’ll just enjoy it while it lasts.

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.

So much for October

November 2, 2015

October is my favorite month of the year. It’s not hard to see why. For one thing, heat and humidity make me feel like shit. They exacerbate my symptoms and I pay the price all summer long. October is the first month that I feel decent. There’s 2015-11-01 14.07.39no snow or ice to deal with yet. And I get to enjoy the gorgeous fall foliage here in New England.

Except for this year.

In September I had a bit of an accident with a knife, and I haven’t been able to walk around much since then. I’ve been enjoying the cooler temperatures and lack of humidity, but there’s just no way I can walk around in the woods right now. Still, as I look at my post-surgery foot, or rather, the bandage around my post-surgery foot, I’m trying very hard not to feel too bad about missing out on my favorite month of the year.

There will be another October. There will be many more Octobers. And I expect to enjoy quite a few of them. I can still see some of the pretty colors from the passenger seat of a car. Ok, it’s not the same, but that’s ok. It has to be ok. Because I can’t keep feeling sorry for myself.

There are a lot of things I can’t do anymore, and that’s I’ll never do again. I will never jog again. I will probably never ride a bicycle again. I will never backpack around Europe again. I might never work in an office again. But there are still a lot of things I CAN do. So as I see the calendar yelling at me that November is here, I’m trying not to feel too bad about missing out on October this year. There will be another one.

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 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?

You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.

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