Archive for September, 2011

September 21, 2011

My PT dilemma

by Living with RSD: what comes next?

I am faced with a PT dilemma. PT is working. My back and neck are actually feeling better. I can see my neck again. My shoulders are starting to release. I know that I can continue to get gains. Truth be told, I’m just tired of going. It’s been 10 months, on top of two years, of weekly and biweekly visits. I’m tired and quite frankly poor. At $15 dollars per visit, it’s costing me about $60 per month for the visits. Not to mention the time away from either work or the family. I just am not that motivated to go. I’ve been trying to talk myself into believing that it could be different if I cut things back to just once per week. I suppose that it could, but I can’t even manage to get to the appointments. I’ve missed the last two. One for lack of scheduling and the second due to traffic. I was supposed to call back yesterday, but I couldn’t even manage that.

I’m thinking that the real trigger is that I just want to be as normal as possible. No more doctors. But I do have a new norm. It’s all a lot to consider. A step at a time. The first step is to pick up h phone and make the call. May be I will, but, then again. When all else fails, I think, what would I tell my kids. Do the right thing, but I hate the right thing.

I’ll call and try and get scheduled soon….later.

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September 17, 2011

A big day

by Living with RSD: what comes next?

It is very big day for me. A big step towards acceptance of my RSD.

If you have read any of this blog, you know that I pride myself on my shoes. I love them. I do pick my outfits according to the shoes. And, I will check out everyone’s shoes in the room. First thing that I do. I don’t think about the ones that aren’t my style, but I sure do zoom in on the ones that I love. There are also certain people that I seek out just to check out their shoes. For me, not just an obsession, but my identity.

I have worn the same pair of tennis shoes for the last 4 months. My last fall was about 3 weeks ago. I used to fall several times a day. This is a huge advance for me. I have been terrified to wear real shoes. Plus, the brand of shoes that I am allowed to wear is really not my style. They are clunky. Not the sleek shoes that I am used to. Not the beautiful heels, but a chunky, clunky heel that is rubber and not imported leather. I fought buying these shoes. I didn’t want them. But, I tried them on. I am not going to lie. I thought that they were ugly. I still think that the are ugly. But, they did feel great. Almost like wearing two bricks on my feet. Very stable.

So, I was a big girl and bought the ugly, practical shoes. Now, I have two pairs that I can wear to work. I don’t love the shoes, but I am proud of myself. I did the right thing. I still need to buy more shoes, but this was a big first step. Next step, black boots. Michael Kors has some beautiful ones. I just hope that they are stable enough for me…

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September 14, 2011


by Living with RSD: what comes next?

When you have a chronic disorder, disappointment is something that you’ve come to live with. Disappointment that you can’t hold your child’s hand, go on long runs or wear your favorite shoes. Again, not to be such a Debbie Downer, you hold onto disappointment as the familiar. It’s almost that when something does go your way, when the pain has faded, you can’t enjoy it because you are waiting for the tides to turn.

Disappointment has become a standard of living for me, almost like eating or brushing my teeth. I don’t particularly enjoy it, but it’s just something that I need to go through. I didn’t realize this until later this afternoon. Once again I found myself disappointed. But, I’ve come to expect it. Disappointment can become a nasty habit or a dirty secret. To top it off, I’m disappointed in myself for being disappointed. A circle of frustration.

So, how to turn the negative into the positive? How can I not turn this into low expectations? I know the problems, not the solutions. This minute, I’m trying some deep breathing. Living moment to moment. By focusing on that, I can’t get disappointed over the bigger picture.

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September 8, 2011

Debbie Downer and Holly Golightly

by Living with RSD: what comes next?

I’ve been remiss in posting on my blog lately. I wish that I could say that I was on a fabulous holiday relaxing on the beach somewhere. But, no. I have been doing the same old routine. I’ve just felt like such a Debbie Downer lately that I didn’t want to subject anyone to my mood, even in my blogging world. My first instinct has always been to hide these moods from other people. I tend to be an upbeat person at heart, but I can’t seem to pull it together. I can’t say that this is the best approach to the world. It tends to keep people at a distance since there is a side to me that no one really knows. But may be it’s time to open up that side a little bit. I just hate to pull people down.

So, here I am, stuck in rut. Holly Golightly talked about getting the mean reds in Breakfast at Tiffany’s. The mean reds are worse than the blues. The blues, you see, are just when you are down a little bit. But, the mean reds is when you’re sad and you don’t know what you’re sad about. To cheer herself up, Holly visits Tiffany’s, a place where nothing bad could happen. Here I am in the mean reds and I don’t have that place to visit. I’ve tried to refocus my energy and regain my Chi. I held onto it for awhile. That positive place in my world where anything can happen, but I’ve even lost my Chi. Now, I’m not only Chi-less, but I’m Tiffany-less. No where to hide from those mean reds.

This leaves me with nothing left, but to acknowledge that I am in a negative space. Not end of the world negative, not even unhappy negative, but definitely not a happy space. I don’t like it, which is another not or negative to add to my growing list of negativity.

For today, I thought that I’d try to reroute that negative to a positive. May be, just for today, or just for an hour today, I’ll take the time to recenter myself and think about not not being happy. That’s a tall order for me. Or may be I’ll just go to Tiffany’s instead. Sort of a What Would Holly Do approach to the world.

September 2, 2011

Shaking the globe

by Living with RSD: what comes next?

As a child, I loved watching snow globes. There was something very peaceful in them to me. I always spent my time focusing on the scenery inside. My favorite globe was from NYC. The Empire State Building and Statue of Liberty along with the streets of the city. It even had tiny people on the inside, shopping. I would marvel at the size of the not to scale, or even geographically incorrect, city was. I loved it. Then, I would shake as hard as I could to watch the fake snow crystals fall to the ground. I would look to see if the people somehow magically moved. Or if the Statue of Liberty put down that heavy torch. But, it always remained the same. Constant and unwavering.
For today, this is my inspiration. As my world gets shaken, I get to decide to remain constant and unwavering. Somehow, I find this image very comforting. So, sitting here in the parking lot for my PT appointment, I’m going to dedicate this day to be my snow day, even if it is only September.

It also makes me want to go to NYC again. I broke my globe and need a new one!