August 5, 2011

A landslide

by Living with RSD: what comes next?

I’m a very musical person. There is something very calming and soothing to me. It can bring me to a place of clarity that I can’t reach with people or words.

One of my favorite songs is Landslide by Stevie Nicks. I’ve been obsessing on it recently. As a matter of fact, I’m listening to it right now as I write. For those of you who don’t know, it’s about changing and growing. As I child, I felt like it represented growing up. Then, as a young adult, it made me think of letting go of your youth and becoming an independent adult. Now, it gets me to thinking about the changes that are going on in my life. I’ve always been one to embrace change. Embrace might not be the right word. I cannon ball through changes. I thrive in change. This is likely the first change in my life that I haven’t embraced. Change is a necessary evil. You must change in order to evolve. Living with RSD has forced me to change in a direction that I’ve been fighting. I’ve been so uncomfortable for the past few months because I realize that change isn’t something that I enjoy right now. I don’t know that I’ll get to enjoying this change, but I think that I can learn to embrace it a bit more. Like the song says, “I’ve been afraid of changing..”

May be it’s time to jump in. If I can’t cannon ball, may be I can dip my toes in and get my feet wet.

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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 27, 2011

Face the music

by Living with RSD: what comes next?

So, I’ve gained 12 lbs since I’ve been working out again. Some very kind individuals tell me tht it’s muscle, but it’s not. It’s from poor eating habits. I could make many excuses, but it’s from me not taking care of myself.

For three months after my surgery, I didn’t exercse one bit. I did the physical therapy, if that counts, so I was moving. But, it wasn’t the high intensity cardio that I like so much. And have been doing 5 times a week. I went back to the gym hoping to maintain. You see, I’ve trained for the 10 milers and 10Ks. 100% of the time, I gain weight while I’m traning. This isn’t because of a lack of exercise. Poor nutritional habits.

I do have a sweet tooth that accounts for some of my bad habits. But, the worst part of it all, is that I’m not eating enough. I am so used to restricting my diet that I can’t seem to find the right balance between exercise and food. I am also nervous that the side effects of my meds are catching up with me. All of them warn about weight gain.

So, my solution is to journal what I eat. I hate doing that. It’s a form of torture. May be the thought of journaling will be enough to do what I need to do. I also need to add more weight training and less cardio, or less intensive.

OK. A plan works for me. And the public confession. This way, you all can hold me accountable.

July 26, 2011

The pleasure of pain

by Living with RSD: what comes next?

I’ve had this neurostimulator implant for two and half years now. For those of you that don’t understand how they work, I’ll do my best to explain. I have RSD, which gives me wrenching pain in all four of my limbs. It also gives extreme temperature changes and swelling to the joints. I loose my perception of where my limb is in space, which matters more for your feet. It’s not constant, but I can’t control when it comes and goes. Stress makes it worse and exercise makes it better. The neurostimulator does not stop the disease. It blocks my perception of the pain, or stops the pain. My hands still turn blue and purple, but I can’t feel it as much. Every once and a while, I’ll turn off the neurostimulators to see if I still need them. Doesn’t take me too long to realize that the answer is yes. I couldn’t function without them.

This got me to thinking if only there was a device like this to stop the pain to you soul. You could just turn on a switch and let the pain happen around you. The pain happens, but you just don’t take it so much to heart. This got me to thinking even more. The reality is that we do have the power within yourself to slow down your perception of pain. Somehow, thinking of dealing with my struggles this way was helpful.

July 23, 2011

What did you say…sorry, my mind was in Paris

by Living with RSD: what comes next?

I saw Midnight in Paris last night with a good friend. It was a beautiful, touching film about reinvigorating your passion for life. I loved it. I loved the scenery, I loved the clothes and I loved the styles. It was an absolutely breathtaking film. It got me to daydreaming. If only it were as easy as being wisked away by the lost generation. Bohemians who live the artists life, painting, drawing and writing about the romance of Paris.

So, all day today, I’ve been captured and taken away to Paris. I was 14 when I went to Paris. The city was overwhelming. You could breathe in the energy. I have been waiting to go back for years. Watching this film recaptured that feeling. All day, when the phone rang, I was in Paris. During meetings, I was in Paris. I haven’t thought about any health issues today or any other of my life stressors. I’ve been in Paris. I don’t know how long this will last. I just know, for now, I’m still in Paris.

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 14, 2011

Going back to school

by Living with RSD: what comes next?

I had the chance to spend a lot of time over the weekend with school-based personnel. I used to work in the schools myself. I sat in sessions, in the speakers classrooms, and listened to the latest and greatest in my field of work. The enthusiasm of the professional Learners got me to thinking that may be going back to school and learning something new isn’t such a bad thing. Unfamiliar, yes, but not bad. So, may be learning or re-learning how to manage my pain around the weather fronts and what shirt can hide my atrophy in my wrist doesn’t have to be construed as a bad thing.

So, I was all geared up about this whole notion of going back to school, or re-learning, with the speciality of RSD. But then Zumba happened.

I love Zumba. I went to my first class, but accident. It was the first class after my first surgery going back to the gym too soon. I have been doing it ever since and consider it my therapy, both physical and mental. I have been fighting hard to get back my stamina. But there is a group of grown women, I’ll call them the Zumba mafia, that reminded me what I hated about school. You see, the Zumba mafia has to stand in the front row. They are loud. They move together. They are disrespectful to the class. And the largest insult that I can give them, they interfere with other people’s workouts. Saying all of that, I actually do really enjoy them individually. Collectively, they are no different than any other queen bee and wannabe group that you see in school. I did always hate that. So, in the school of RSD, there are still those people that keep you down. I know that it’s a stretch, but humor me. As many insults as I’ve thrown, I think my real problem with them is that I envy them. They get to take it all for granted. I need to be worried about if I’m going to fall again because I can’t feel my feet. I know they have their own set of worries, but it’s still difficult for me. I suppose the moral of the story is that going back to school isn’t all about books and learning about RSD and the pain management of that, but it’s the pain management of the Queen Bees and how I handle my emotions.

I handle it the same way that I did in high school. Kill em with kindness. They are my Facebook friends. And I never let them see me hurt.

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.