Posts tagged ‘RSD’

October 4, 2011

If wishes were horses..

by Living with RSD: what comes next?

My dad has these funny sayings. He grew up in the Midwest. I don’t know if that’s where they came from. I just consider them his dad-isms. One of my favorites, or the most compelling one, goes something like this. “If wishes were horses, frogs wouldn’t bump their a$& on the ground”.
Nice visual, right? I used to spend hours trying to figure out what this meant. So, in the middle of my teenaged angst or just general complaining mode, my dad would pop out with that one. I can remember, in long car rides, wishing that it was over. My dad would pop out with that one, well, if wishes were horses. We would all laugh hysterically because, really, what is a better visual than a frog on a horse. And how does is even make sense? And, is that the best that he could come up with? I still wished that the car ride was over. And, what a pessimistic point of view. I suppose that he was trying to tell me that it’s useless to wish because the won’t come true. But, don’t buy it.

I agree that some wishes just aren’t ever going to come true. I could wish that I had a million dollars and I suppose that would never come true. I could also wish that I didn’t have RSD. At this point, that won’t come true. It is pointless. But, I think that if you make a wish that it closer to reality, than may be you can manifest it to come true. I wished that I would stop hurting myself by falling all of the time. I worked at it with PT and exercising. I also gave up my precious shoes. I can’t say that it will never happen again, but it came very close to coming true.

So, I have a visual of a frog hopping around the stables, trying to get on that horse. May be the real message is that you have to work hard for your wishes to come true. I don’t know. I have a Shrek-like, puss-in-boots vision of a frog, in riding boots, jumping on a mini-horse. It could happen.

And I guess that my RSD could go into relative remission. If I keep working on it..

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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

Disappointment

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 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!

August 28, 2011

Tearing down the blocks

by Living with RSD: what comes next?

It’s been some time since I’ve last written. I’ve had some pretty bad writer’s block lately. I can’t say that I’m surprised. It kind of matches how I feel, I feel very far removed from my emotions and myself. Lost.
I’ve always been a person with direction, a Virgo for those of you who follow horoscopes. I typically have a plan B and do risk analysis before making major decisions. Even minor ones truthfully. But this block….I don’t have a plan. I’m just stuck. Nothing. I’ve got no plans.
A major breakthrough in my physical therapy has happened. I can now wear shoes other than tennis shoes. Big deal. Huge. Major. But I can’t seem to do anything about it. I have this block. I can’t go back to my old shoes. They will hurt me. Or, to be more clear, I will get hurt wearing them. The therapists have recommended the new shoes for me. I don’t want them. I want my old shoes. But, can’t have them. Only for special occasions. I need go move on. It breaks my heart.
Instead of moving on, I just stay in my Brooks Running shoes, even though I’m not allowed to run anymore. At least they have purple shoelaces.

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August 14, 2011

New career: Weatherman?

by Living with RSD: what comes next?

Stormy weather has always been my favorite. Particularly after this long hot summer. Now, I have my own built in weather system. Just when it feels like someone is squeezing my neck, arms and legs, the storms typically roll in. It’s not too uncomfortable, relatively speaking. Just different.
So, thinking of ways to capitalize on this, I’m thinking weatherman. I am pretty accurate. Of course, this is only right before the storm comes.

The future seems brighter every day.

August 11, 2011

Visiting hours

by Living with RSD: what comes next?

Some people visit their long, lost loved ones, sharing conversation, coffee and well wishes. They find comfort in the love that withstands the test of time. Like a favorite old book, you can pick it up at any point in time and fall in love all over again.

Some people spend hours with these loved ones. I visit my shoes. I was feeling a little down tonight, so I went into my shoe closet to visit my adored ones. They were a little dusty in need of some TLC. There was a method to my madness. I started out with my shoe closet. I went to the summer flats at first. These were my most recent rejects. They looked a little sad. No summer parties, or walks through the parks. Just a storage bag to hold them all. They barely saw the light of day.

I went over to my next set of forgotten friends…the winter boots. Now, I packed these up a long time ago as well, so they were a little dusty. But, I had also double bagged them and put them in a storage box. I sat on the floor and caressed the soft suede of the boot. I did refrain from smelling them, but it was tempting. I love the smell of distressed leather. I wanted to spend more time with them, but I had my eyes set on something else.

Now, day to day shoes I will store in bags and boxes because it’s easier on the space. But my favorite friends stay in their original boxes. Lined up on shelves, OCD style from largest to smallest. I dusted off the boxes, because they were dusty, and ran my fingers over the labels. I can’t say that I’m really into the labels as much as the quality. After all…those 4 inch heels can really tear up your feet. Today, I couldn’t open the boxes. I simply said hello to my old friends. But, there was one pair that I needed to visit.

I went into my clothes closet, where I have some overflow. I pulled out the very pair that I wore almost a year ago when I broke my foot. Amazingly, they didn’t break. I didn’t put them on”. But, I do believe that time will come soon.

I do visit the old friends every now and then. I’m coming to the end of my time in tennis shoes. I don’t know what my PT has in mind. I keep showing her pics of the fall boots. Surely, there are more options!

August 5, 2011

A landslide

by Living with RSD: what comes next?

I’m a very musical person. There is something very calming and soothing to me. It can bring me to a place of clarity that I can’t reach with people or words.

One of my favorite songs is Landslide by Stevie Nicks. I’ve been obsessing on it recently. As a matter of fact, I’m listening to it right now as I write. For those of you who don’t know, it’s about changing and growing. As I child, I felt like it represented growing up. Then, as a young adult, it made me think of letting go of your youth and becoming an independent adult. Now, it gets me to thinking about the changes that are going on in my life. I’ve always been one to embrace change. Embrace might not be the right word. I cannon ball through changes. I thrive in change. This is likely the first change in my life that I haven’t embraced. Change is a necessary evil. You must change in order to evolve. Living with RSD has forced me to change in a direction that I’ve been fighting. I’ve been so uncomfortable for the past few months because I realize that change isn’t something that I enjoy right now. I don’t know that I’ll get to enjoying this change, but I think that I can learn to embrace it a bit more. Like the song says, “I’ve been afraid of changing..”

May be it’s time to jump in. If I can’t cannon ball, may be I can dip my toes in and get my feet wet.

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August 2, 2011

Am I a hypochondriac?

by Living with RSD: what comes next?

I had an appointment with my pain management specialist today. I was dreading this day because I knew how the conversation would go. Right before a holiday, I had an episode with my device. It was malfunctioning and didn’t seem to work. I had shocks every 10 minutes going up to my head. When I went to get the devices reprogrammed, the device rep told me that two leads were burnt out. He didn’t know why. That was 6 weeks ago. I’ve been dreading this day ever since. I knew that that episode would spur a number of questions that I couldn’t answer.

So, tonight I have a fistful of prescriptions, tests and appointments to schedule. Ultimately, I know that I’m okay. But, here’s another series of CT scans, blood tests and neurosurgeons. It’s the great catch 22 at the doctors. Do you keep your mouth shut or do you let them know what’s going on? And, if you do tell your doctors, what do they think? In my heart, I just want one week without a doctor’s appointment. I want to be able to spend that time with my kids. Instead of less appointments, I have more. And, I really do wonder sometimes, am I a hypochondriac? Is this some sick cry for attention that I really don’t want? After awhile, you hit a point where you start to question yourself. I have some comfort in thinking that really hypochondriacs wouldn’t question themselves…or would they?

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