Archive for June, 2011

June 28, 2011

It’s a small world

by Living with RSD: what comes next?

Is Disney really the happiest place on Earth? Well..kind of. Disney did what no one else has been able to do, I really did forget my problems for a few days. I was brought back to reality when the pain killers wore off and my feet swelled up. I could have let it bring me down, but I realized that I had all of the tools with me. I had the medicine and the appropriate footwear, sure, but what got me through the week was me. It was my first time not being able to go on the rides. I was nervous about how I felt about it, but more nervous about how my children would feel about it. They did a great job. And what I missed was hearing my children laughing, or crying, on the rides. I wanted to be there with them, but in my own way, I was. I got to cheer them on and be there when they got off. Not only that…I was able to keep up with them walking, running and waiting in the park. Granted, the painkillers helped a great deal, but I did it! I felt like I proved to the kids that things might be different now, but it’ll all be okay. That did more for my recovery than any physical therapy, doctor or narcotic. So, things might be different, but it’s all going to be okay.

Back at home, I’m trying to keep the spirit of Disney with me. That spirit that our differences are what makes the world go around. One mouse did for me what no amount of painkillers or medications could do. I have a t-shirt and coffee mug to help me remember when I slip back to defeat and the blues of having this disorder. At the end of the day, I get to be me. My flawed self has nothing to do with the disorder and everything to do with my soul. It’s more important to focus my energy on rebuilding my soul and my body will follow.

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June 19, 2011

Audrey Hepburn wore flats, so they can’t be that bad

by Living with RSD: what comes next?


I’ve had some challenging days behind me now.

I began a new round of physical therapy focusing on proprioception and desensitization. My physiatrist wants me to focus on reducing the impact of the RSD and to stop falling. All great goals, but I can’t say that I’m too optimistic about them. You see, as part of my real 90 day challenge to myself, I wanted to explore how to deal with the long lasting impact of RSD on my own. Not to be in therapy anymore, but life took a different turn. The most challenging of it all was to hear the therapists impression of me. A very unrealistic expectation was that they would say everything is okay and I don’t need therapy anymore. No such luck. Not only did I hear promises of “we (I) can do better”, they took away another one of my great pleasures. Yes, it was time to address the shoes. Now, in all fairness, I hate my shoes now anyway. A collection of ballet flats, which are nice on low key days, but no fun when you have parties and work to go to. I was being good by wearing those. But, the ballet flats aren’t even good for me. Stability sneakers that is a fancy word for orthopedic looking shoes. These days, they have really nice ones. It wasn’t realistic of me to expect any different recommendation. $200, which blew my budget, for the shoes, orthotics, and socks to go with them. I could have a really bad ass pair of heels with that money. Plus, they made me recycle my toners. The toners are bad for me, but I spent $90 on those. So, total out of pocket cost was $300, not to mention what it cost my heart and soul.

To top it off, the PT discussed the use of a cane. My immediate, more guarded response, was no. I was thinking of the more appropriate “hell to the no”. I’d love to be the role model of someone who is handling the disorder, taking care of business. Instead I shot down the recommendation from any further discussion. The last time that I did this was when they recommended a lower spinal neurostimulator implant to help me out with my feet. I broke my foot the next day on travel with an unnecessary fall, in some cute strappy sandal wedges. I leave on holiday tomorrow for Disney, so, if history repeats itself, I could have a big fall coming to me with Mickey and Minnie.

To add insult to injury, on the same day, my neurostimulator wasn’t working properly. In the end, it was two dead cells suspected of causing the surges and shut offs from my device. By the time that I saw my device rep, my hands were shaking so badly that I couldn’t hold my device in place. I had to hold onto the walls to walk down the hallway. My original pain management specialist came into check on me. He wondered why I hadn’t seen a neurologist to check on all of these symptoms.

So, if we’re really looking closely, in this 90 day challenge, my goal was to move away from traditional medical treatment and closer to a less invasive Eastern Reiki treatment. I had hoped to document the impact of that. Instead, I have seen another orthopaedic (for my back), plastic surgeon (for breast reduction for my back), physiatrist, new round of physical therapists, three different device reps with two emergency reprogramming appointments, radiologist for a CT scan of my ankle, and a recommendation to only where stability shoes, walk with a cane and see a neurologist. I think that I have movement the opposite direction of my goal.

Here’s what I think that I might be missing. May be this is moving towards my goal. I wanted the rest of my life. May be this is it. Balancing my job, my family and now my evergrowing medical team. What is missing in that, for me, is my life. What happened to me? I’m getting lost in sea of treatment.

May be I’ll find it next week at Disneyworld. It’s the first time off in some time that doesn’t pertain to doctors. It’s just about me. It’s nice to remember me. I never thought that I’d say that it was my goal to be in those ugly ballet flats, but I do miss those. After all, Audrey Hepburn worn flats too, so they can’t be all that bad.

I’m still not using a cane!

June 14, 2011

The case against Google

by Living with RSD: what comes next?

I love Google. I spend most of my work day, and life, using it to find the right answers, but, to be completely honest with you, the last few days have been pretty tough on me. You see, I made the mistake of googling my medical prognosis and options. I didn’t like the list of choices presented to me. I’ve been trying to stay positive, but it’s just emotionally draining to stay that way.

You see, my foot has not been healing properly. I broke my foot and sprained my ankle 10 months ago. It has not healed, after 3 months of staying off of and physical therapy. I had a CT scan, with and without contrast, yesterday. It made me feel utterly exhausted. I don’t know if it was a reaction to the contrast, or if it was going NPO while on meds, but I couldn’t keep my eyes open. I even left work a little early, which is a big deal to me since I am limited on leave. It may be not being able to read the results and then having to wait for the interpretation. Even though I should know better, I googled what the results could mean for me. I’m not sure that I am happy with any of the choices.
1) My best case scenario is that my ankle just needs more time to heal. I start another round of PT on friday, which brings my new total up to 5 months, to work on my proprioception and desensitization to get the RSD under control.
2) A slighty more aggressive approach would be to boot and/or cast my foot. If the ligaments are loose and just need more time isolated, this might give it the opportunity to restrengthen it. This would also put me out of the exercise classes that I love so much. But, would trigger a worse RSD response in my foot.
3) My final option is a surgical repair for my foot. This would also involve 1-2 because it would add more PT and might result in the boot. Also, a very nasty RSD response. I’ve read that this might also involve another injection.

I was looking for more freedom in medical decision making and more liberation to start the rest of my life, but it feels like that control is being taking away. My choices are all ones that I don’t want, but doing nothing is not a realistic option. You see, I keep falling. One of these falls resulted in a repair of my original spinal neurostimulator. I’d like to say that it wasn’t because of the fall, but I just don’t know. Why I know is that I am moving farther away from the cute shoes and closer to the flats and hightops that I’ve been trying to avoid.

All this right before I leave for Disneyworld. I wanted the kids to have a trip where they would see that nothing has changed, but it all has. I can’t ride the rides with them. I don’t have the energy to walk them around all day. Now, I might need a boot to be able to do that. I know it might be the right thing to do, but I’m not happy with it. If I were to consider this under the guise of my body budget, I would say this puts me at a lower level for today. I really wanted to be higher. And I really wanted to get back in my “big girl shoes”. I suppose that I shouldn’t feel down about decisions yet to be made, but easier said than done. May be tomorrow…may be instead of googling medical decisions, I need to start googling some cute shoes. Chanel has some great flats. Target is closer to my budget.

June 12, 2011

Faking it

by Living with RSD: what comes next?


I feel great. After 3 cups of coffee and a tramadol. I’m ready to exercise. I know that I will feel my endorphin high later. I also know that I’ll pay for it later.

So, the question of the day is this, is it better to fake it and take some pills to have some extra energy to exercise, or should I not take the pills and maintain my low level of energy? I don’t know. Yesterday, I had a great day. I also took a tramadol and higher doses of Lyrica. Oh, also a two hour nap. I woke up very tired and groggy today. Nothing that another tramadol can’t take care of. But, this is how the addiction starts and is exactly what I didn’t want. Medication to get through the day. But, all of my days lately are just me faking it. Faking the smile, faking the confidence and faking the happiness. It’s like I’ve left the party in someone else’s coat. Everything feels all wrong combined with that big after celebration let down. And now I’m left with what comes next. Feeling uncomfortable, awkward and unfamiliar with my own self.

Next, I get to go play the part of someone in shape, who loves to exercise, only I can’t really do what I used to. May be no one will notice what goes on behind the smile.

June 10, 2011

Money does grow on trees

by Living with RSD: what comes next?

I used to have this great vision of a child of a money tree. It looked like a tall oak tree with all kinds of bills in the place of trees. I wished that I could be the first to find that money tree. As an adult, I’ve lost the vision. However, I realized that money does actually grow on trees.

Here’s my thought. I can’t make more money, so, in looking at my financial budget, I need to look closer at my how I spend my money. Stores are continuing to raise their prices and the price of gas is at a “cheap” $3.75 per gallon right now. But, here’s the money on trees, coupons!

I have tried to commit to coupons over the past few months. It’s a lot of cutting without a lot of pay off. My first try at it, I spent $250 and saved $5. Not too great. I did better the next week, saving $10 on $80. Then I lost inspiration. I admit, I did stop watching Extreme Couponing, which was fueling my coupon frenzy. But, it still didn’t seem to sustain me.

This morning, as I was thinking about my money tree and childhood dreams, I realized that rather than trying to compete with the couponers, some of whom seemed like glorified hoarders (sorry), I just need to envision that money tree. Instead of bills on that tree…coupons. All I need to do is see the tree through the forest.

June 7, 2011

The price of things these days..

by Living with RSD: what comes next?

I’m at the point in my life to follow what I love..what does this means to me?

There is a price and cost associated with and to everything these days. Financially, how can I not focus on the actual costs of things? With gas averaging $4 per gallon, prices of groceries skyrocketing, I can’t help but focus on my bottom line. It’s like getting pay cut. The benefit to all of this is that it forces me to really examine how I choose to spent my “assets” and why. I constantly challenge myself with questions, including what will this add, do I really need it, is it a want and can I get it cheaper. Answering these questions help me to determine the right decisions. I am clear and confident about what I choose.

I’ve been trying to use these same questions to apply them to my health and body budget. For example, I’ve received the medical clearance that I wanted to go back to exercising. I used to work out a lot. I used to train for 10 mile races a few times year. I used to go to Zumba several times per week. All of those things were my outlet. They are clearly something that I value and want, and need, in my life. It is a clear want. I might also argue that I need exercise in my life. However, energy is limited. Therefore, I need to determine what is my real need and what the consequences of that exercise might be. For example, I have just finished my Zumba class for the third day in a row. I can already tell that will have a significant impact in my energy levels. I was hoping that it would assist me in getting to the next level of fitness. But, I can see it’s going to have a negative impact on what I am able to do these next few days. So, while I did enjoy my Zumba, it didn’t add anything to my recovery. A better choice might be to focus on strength training. My emotional bank has been fairly high the past few days. But, my physical budget is low. My foot is numb. I believe that my same injury to the break and ligament tears are aggravated. So, I made a bad choice with my assets. For the next few days, I need to recoup what I’ve lost. Tomorrow, I’ll try yoga or something else more low key.

June 5, 2011

What I have learned from nature

by Living with RSD: what comes next?

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I went to the National Zoo yesterday. Absolutely amazing animals. I fell in love with the clouded leopard. I don’t recall ever seeing fur so beautiful. It got me to thinking about all that I could learn from nature.
1. Even though I do love the clouded leopard, there are so many different furs and pelts that are just as beautiful. We were not all created to be the same. May be there is room for differences.
2. I love a monkey. Let me tell you why. Monkeys are smart. Monkeys don’t like to be limited by cages. But, monkeys make the best of it. They roll around, play and fling poo at each other. They are making the most of it and still having fun! Who couldn’t learn from a monkey?
3. Some animals are more popular than others. It reminded me of high school. But, that didn’t make the “less popular” animals less. They weren’t less intriguing, less fascinating or just plan less.
4. Mob mentality rules. At the panda house, everyone mobbed outside, where there were no pandas to be seen. They sat waiting and the crowd grew larger in anticipation of something that was never there. But, if you turned the corner, you got to see the panda. Sometimes, you can’t follow the mob. Make your own path.
5. The zoo is fun!

We topped the day off with a trip to Georgetown Cupcakes, which were absolutely wonderful and worth the wait in line. I’m trying to use what I learned from the zoo to be okay with the fact that I am different and lost a little of myself. It’s a slow process for me. I’m not sure that I’ll get there. In the meantime, I think the larger lesson learned was that every day is better when you top it off with a cupcake!

For my body budget, physically I feel spent. All of the walking and long easy burned me out. Emotionally, I am overflowing. The city and life has an energy all onto it’s own. It’s contagious. The big question of today is what will these energy levels help me get done today?

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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