Archive for ‘Rehab’

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

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 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 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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July 31, 2011

The upside to things

by Living with RSD: what comes next?

I saw my physiatrist on Friday. The good news is that I’m almost officially no longer a fall risk. Still stuck in the tennis shoes, but they are working. The sort of bad news is that I have two more months of therapy. The upside to that is that they are finally going to work on my back and getting me more comfortable. I can live with that.

My kids were really upset when our cat of nearly 15 years passed away. His body finally had enough with a tumor that was infecting his blood stream. He stunk. The upside to that is that my daughter was finally able to get her bunny. She’s adorable and the dogs have really taken to her. I can also live with that.

Regrets are a funny thing. We offer them when we are unable to attend a party. But we also despair over them when we are unable to change the events of the past. The same word can be used to describe two distinct things with such different levity.

I have many things in my life that I wish that I could change, but I’m not sure that I have any regrets. I live with the full knowledge that life unfolds as it should. That thought offers a lot of comfort to me when I can only see the downside to things.

July 19, 2011

Hairline fractures, dislocated kneecap and groin pull…oh my

by Living with RSD: what comes next?

4 months into physical therapy. My second round. I have a third round coming to work on my back.

Every time I go to therapy, I have a new pain. This is likely due to my time spent with the Zumba mafia, but I feel closer to Humpty Dumpty. After finally getting my ankle back into alignment after 10 months, my ankle bone continues to hurt. Last week, the physical therapist assistant decided that this must be due to my kneecap. I was supposed to get surgery some time ago for my slippery kneecap, but opted out. She taped up the kneecap and sent me on my way.

A few falls and a few visits to the gym later, I also have nasty groin pull to go with that. It doesn’t stop me from my exercise, but probably should. Today, at the physical therapists, I showed her m pain and she decided that I must have also had a hairline fracture on my ankle when I broke m foot several months ago. She taped it up and said that this is what is throwing off my knee and groin pull. All compensatory.

So, I am beginning to feel like I was better off before I went to see them. I don’t know if it’s better or worse to know all of the complications. They don’t have enough tape for all of may aches and pains. How far up would they have to go?

In the meantime, got to rest up. I have a Zumbathon this weekend.

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 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.