Posts tagged ‘pain’

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 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!