Posts tagged ‘body’

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!

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June 1, 2011

Body budgeting with an early wake up call

by Living with RSD: what comes next?

I’m up again at crack-o-dawn, as my old co-worker would say. To top things off, I have a function this evening that will have me coming home at 10 tonight. I can hardly remember the last time that I was out. I was a good girl and didn’t grab my Lulu Guinness wedges to wear tonight because I know that I should be wearing flats, even though I really hate my flats. They need some attention. But, chances are that my balance continues to be off. It’s hard to get dressed for cocktail hour when you have a two inch scar on the back of your neck, but I think that I have succeeded in matching comfort with style. But, it’s a new thing for me.

As for my body budget, I’m running on a no budget day. I did do rehab last night with my hands, so my arm is cramping up. It’s also a day with a heat advisory, so I also know that the weather will be slowing down. This means that I should take it easy today. Easier said than done! I haven’t learned that skill yet, but I am trying. So, for now, my plans are to move slowly and may be even take a nap at work if the 14 hour day proves to be too long. We’ll see how that goes.

All in all, I have a plan. The more in control I feel of my choices for my body, the more control of my RSD I’d like to think that I am. I would like to control my body to sleep, but that appears to allude me for now. I wish that my finances were this in control. My prescription went from $40 for a three month supply to $120. Wow! I wish that I had that kind of increase in my pay. The cost of this disability is brutal. I spend $100s a month on doctors visit and $100s more on my 4 prescriptions. And they tell me not to be stressed. I make too much money to qualify for assistance, but not enough to not feel that pain. I do place funds in my FSA for medical costs, but that is still money that could have been in my pocket. Yikes! As for the money for my prescription, I would much rather but the money into some cute black flats because mine are old and worn out. Like me!

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May 25, 2011

Budget busters and PT

by Living with RSD: what comes next?


These topics seemingly don’t go together. But, in my warped mind, they do. Today was my second to last day of physical therapy. During my 3 month long, long stint in PT, I learned a few things about myself. One, I hate PT. Nothing personal. I just don’t like having the restrictions and the pain of rehabing the very parts of your body that are actual pain. The goals for me were to focus on my back, upper and lower, arms, core and legs. Like me, you might be wondering what’s next? Second, for the first time in my life, my goals weren’t to focus on returning to premorbid. They were about returning to functional. I am a fall risk because I am unsteady on my feet. I probably will continue to be unsteady on my feet. Now, let’s get to how this relates to budgeting. I went the gym last week. Loved every minute of it. I spent three days recovering from my two hours of work outs this weekend. I need to make very conscious decisions about what I choose to do with my body and the implications and paybacks.
Now, I blew my budget this past month on a reallly cute sweater. I love my new sweater. It wasn’t in my budget. It really compliments my wardrobe and was worth it. I need to focus the same intensity towards my body. Perhaps I should create a body budget that looks at my energy levels and the choices that I make. I tend towards this approach because it doesn’t take away my right to choose. There are some things, such as work or paying bills, that I have to do. But, there are some things, like Zumba and getting cute sweaters, that I choose to do and will make work.
So, my new approach, as I exit PT on Friday, is a body budget based on my energy levels and right to choose. May be this weekend I’ll create that budget. BTW, in the meantime, I’m going to Zumba this weekend!

May 20, 2011

Raise your glass

by Living with RSD: what comes next?
Raise your glass

Raise your glass

Don’t adjust your clocks. It really is 5 in true morning. Insomnia strikes again. I recently saw a newscast that talked about momsomnia about mother’s who don’t sleep because of household worries. I have the not so unique qualifier of living with a disability added onto that. Pain wakes me up. I am robbed from sleep when it’s time to take a new pill, to turn over because my incisions are hurting or because my dreams betray me and remind me of the loss that I’m not supposed to talk about. You see, when colleagues and family ask how I’m doing, they want me to be okay so badly that I don’t have the heart to tell them the truth. But, to my unknown readers and the entire web word, I will give you the truth that I can’t tell them. My body is healing, undoubtedly. But, I realize that I no longer have control of this body. My RSD has taken over. I can’t wear the shoes that I want, the beautiful heels that are a symbol of days gone by. I can’t type some days because my hands are shaking so badly that I can’t hit the correct keys. I can’t walk some days without falling. People will tell you that they are there to pick you up. They aren’t. They are there to hope that you get up on your own. Doctors have discharged me, only to say that I have they have done all they can do. The cruel reality is that this is true. They have. But they haven’t returned me back to normal. This reality is supposed to be my new normal and I fight it with everything that I know how to do. This isn’t the reality that I want. So, what’s girl to do?

Sleep evades me just like my beautiful Calvin Klein peep toe sandals with the 4 inch heel. In my sights, but something that I can’t have. There is no one in control. The RSD took that from me. Every question, every decision that I make, now has the question “Will my RSD let me do this, let me wear this?”.

Medical specialists have long talked about phantom limbs. It’s a medical condition seen in patients who are recent amputees or who experience sudden paralysis due to a trauma, such as a stroke. Patients still can feel the arm or leg that was removed, but their mind hasn’t caught up with their body. They still reach for things, try and use it, and believe that it’s there. I feel like I have four phantom limbs, but they are there. Everyone can see them, but I’m not in control of them. I remember the day that I made the decision for the first implant. My daughter reached out to hold my hand. I had extreme sensitivity to touch at the time. When she reached for me, the pain shot through my arm. My arm, the same one in which my mind wanted to reach for her and hold her forever, my RSD decided this same arm would swipe at her to push her away. She fell back on the sofa, shocked. She was 6 at the time. The worst part about it was that she said “It’s okay Mom. I’m sorry that I tried to touch you”. She wasn’t being snarky. She meant it. But, it wasn’t okay. I looked at her and realized that my ability or inability to cope with these changes in my body weren’t all about me. That was the day I decided to pursue these doctor recommendations. I don’t regret any decisions that I have made. I regret that I had to make them.

So, how do you heal….mind, body and soul, when your body can no longer be what your mind and soul believes and needs it to be? I don’t have these answers. Apparently, I have inherited my mother’s need to look at the silver lining. The secret is that no one, including myself, has the control over their body that they think they do. Otherwise, no one would be overweight, have diabetes or experience heart attacks or strokes. The difference between them and me is that I have the cruel realization that I’m not in charge. My RSD is.

To quote one of my favorite songs Raise Your Glass by Pink…
So raise your glass if you are wrong in all the right ways.