Archive for ‘Goals’

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 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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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!

July 17, 2011

90 days later….and now what?

by Living with RSD: what comes next?

About 90 days ago, I received a challenge to set a goal and work towards it. So where am I now?

I had set out to heal my soul and to focus on the recovery of the parts of me that doctors can’t heal. To find my passion and to figure out the rest of my recovery from surgery….to heal my soul.

Now, I knew that 90 days wouldn’t do it, but I thought that I could get a great start. When I began that journey, I anticipated being done with physical therapy. I wanted to explore other options for recovery. But, my body wasn’t ready for that. More physical therapy, more doctors. I thought that I could start the concept of a body budget. Focus on letting the positive energy flow through me and to get rid of the toxins that hold me back. Sounded like a great plan.

Some time into it, I realized this. The positive energy doesn’t come from exercise, sleep or even eating the right foods. Again, it flows through the soul.

My heart needed to heal. It still needs to heal. I’ve taken great strides forwards to eliminating the toxic energies that were pushing me down, but I still have some work to do.

Now, I sit at the end of my second round of physical therapy. My ankle seems to be holding steady in place and I haven’t fallen into any random strangers lately with the exception of a few close calls today. Much of my control of my body has changed. I can’t do what I used to. I am not okay with that yet, but I am closer to fine.

I realized too that I am both the master of my soul and the very one that puts it in a prison. I have allowed myself to stand in the way of my own happiness. I am making better choices to focus on positive energy everyday, but it’s hard.

I’ve also tried clipping coupons to control my budget. To date, I’ve only saved a out $20 not too great. But, I did score some great samples of post it’s, free paint, a free Bluetooth and some yummy coffee. Can’t be too sad about that.

I don’t know how you measure success. For me, it’s going to be wearing those beautiful Calvin Klein heels and getting to wear some great fall boots. I did score one pair of shoes in all of this. My Brooks running shoes with a stability sole built into it. I suppose that I needed new soles to heal my soul. My 90 day challenge has really turned out to be how to wear the same tennis shoes.

July 12, 2011

An oasis

by Living with RSD: what comes next?

I just finished dropping off my 9 year old at camp. It is a camp set back, in the woods, where they walk through the woods, feed the animals, and get inspiration to do art. Paints, watercolors, clay, paper mâché….it doesn’t matter. They go where the inspiration takes them. It’s her oasis. I couldn’t have invented a better camp for her.

So, this got me to thinking about my oasis. How would I describe the perfect place for me? And has this perfect place changed over the years…I wish that I had the answers. I think that I know what my oasis is not. It’s not a place with chaos. There is order and reason around me. Things make sense to me. I don’t have to guess what people mean or what they are doing. I am not around people who are harming me, either intentionally or non-intentionally. I am not tired. There is a wealth of energy and freedom to do what I want.

It’s not surprising to me that my vision is defined by emotions and emotional support and not things. I can’t define the things, but only the emotions that I feel. In the past, I’ve had many pains and many service providers. Even now, I see a team of specialists to work with ths muscular pain in my foot, the tension in my back, my RSD docs and someone to look over me. But, what I don’t have is someone to heal my soul, or spirit. I’ve thought a lot about those angels in your life, real or perceived, who guide you to your soul. But, the reality is that it’s me, and me alone, who is looking out for my soul. I’ve come to realize that in order to heal your soul, or honor your self, it to speak the truth. But, there are people around you who don’t want to hear it. Speaking the truth can cause pain to others. But, it’s like the whisper that can no longer be silenced. The truth is what heals the soul. I have been trying to honor mine.

In the meantime, I’d like to go take a walk in the woods. May be my oasis will be found.

July 9, 2011

Is RSD the cure for optimism?

by Living with RSD: what comes next?

I’ve always been a closet optimist. My mother has always been the chronic optimist. I never wanted to be like that. I wanted to be a realist…dealing with life’s bumps and turns as they come. Secretly, I would actually blindly and naively believe that things will work out for the best. Pollyanna on the inside trying to pretend that I was Judge Judy.

Lately, I’ve been feeling a little bit down, overwhelmed and flat out wrong. I think that I have finally cured by optimist streak. I can’t say that I believe things will work out any more. I don’t believe in the happy ending, or the bright side. I am glad that my kids don’t have RSD, but I can’t guarantee that they won’t get it. I find myself changing and growing in directions that I never saw coming. I’m tired and I just can’t sleep long enough.

When the RSD made my hands cold, I bought gloves. I have socks and leg warmers to help with my cold feet. In a way, it feels like it’s made soul cold, but I have nothing to warm it. I’ve been trying to connect to my spiritual side, but it’s not always easy. I am finding an envious person looking in the mirror where there didn’t use to be. I have never envied money or things and that hasn’t changed. But I do envy health and the ease of life for others.

I suppose that the grass might be greener. May be my optimism hasn’t been cured after all.

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.