Archive for May, 2011

May 30, 2011

Memorial Day in memorium of ourselves

by Living with RSD: what comes next?

Both of my grandfathers fought in WWII. I’ve always loved Memorial Day,not just for the great parties, but for the red, white and blue. It is the mark of the beginning of summertime and a new season starts. I did have big plans for this weekend. I thought that it would mark the end of my rehab and the beginning of brighter days. My doctor’s appointment on Friday reminded me of this. Not only did my programmer remind me that I should be pitied, he didn’t finish uploading my new programs. My neurostimulator for my arms is malfunctioning, again.
I suppose that I should be used to these curve balls, but I still don’t see myself as having any differences than anyone else. But, I know the world sees it differently.
I spent the past two days trying to get ahold of my device representative. You see, he is away on vacation. I know that he works hard and I certainly don’t begrudge anyone of their time off, but it does sting a little. I can’t go on weekend holidays because I don’t have the energy for it. I tried to take my daughter to the pool yesterday, but I could stand being in the sun. My medications make it difficult. I don’t want to complain, but sometimes I feel like I live in memorial of my old self. I don’t feel different, but my body tells me that I am.
So, today my body budget is pretty limited. I am going to try to go to the gym. The cardio workout gets oxygen to my hands, which gives me a few hours of relief. I have to wait until Tuesday to get reprogrammed until my rep gets back from vacation. I am hoping that with a workout I can get some deposits into my body budget that will let me celebrate the day with the kids. They understand that my energy is limited, but it’s hard on them. My daughter wanted me to play cards with her last night, but I couldn’t hold them. She understands. They always do.
Memorial Day is a great time to reflect on our family members who have passed and celebrate them. May be today is also more than just barbeques and picnics. Today shoud be a day to celebrate the things in the past that we need to let go. It’s also a day to remember our relationships, not only with each other but with ourselves, and to celebrate the new ones. May be it’s time to stop mourning who we aren’t and to focus celebrating who we are.
Happy Memorial Day!

May 28, 2011

Don’t pity me

by Living with RSD: what comes next?

Please don’t pity me. I went to the doctor’s yesterday. The appointment didn’t go as well as I would have liked. I thought that I could be done with doctors for some time. No such luck. I need a CT scan for my foot, a trip to the physiatrist and even more rehab. My back is in spasm, my CRPS is still not being managed well and my ankle and foot that was broken 9 months ago is not healing. I’m not happy with any of these things, but please don’t look at me with pity. In addition to the doctor, I saw my device rep for reprogramming. Gone are days of quick appointments. I was in the doctors for 90 minutes, but please don’t pity me. I watched the man who programmed me. He was very kind and helpful, but he looked at me with pity. He saw me as an individual with RSD. Not an individual. I fight to remember who I am through all of this. I want to be a role model for my kids. I want them to see me and forget that I’m not normal. I don’t want them to know all of the things that I can’t do. My life is hard enough. So, please don’t pity me. I can’t get dressed up because it hurts. I’ve had to cut my hair, put all of my cute shoes in the closet, give up running, buy a new car. I can’t cook a nice meal. But, please don’t pity me.
And here’s why. I know that I have RSD. I fight it every second of every day. I don’t need to see it in your face. I struggle with my loss. I know that it’s not fair. I know that my prognosis is not good, but I don’t need to see that in your face. Don’t pity me. If you pity me, I realize that it’s a lost cause. When you pity me, I don’t feel like myself. I feel like I am just an individual with RSD. But, I am so much more. So…please don’t look at me with pity. Look at me as someone on my team. Look at me like you’re going to make things better, even if you can’t. Look at me like there is something worth fighting for and that I’m not at the end of my rope, the end of my treatment. Look at me with compassion not with pity.

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May 26, 2011

Jerseylicious, Paris and the Secret

by Living with RSD: what comes next?

You must be thinking that I’m crazy to even put Jerseylicious and Paris in the same posting. And…the Secret on top of that. Well, here’s my line of logic. I’m not proud to say that I’m a huge Jerseylicious fan, Team Olivia by the way. But, so be it. Jerseylicious is awesome and it reminds me of my recovery after surgery #3. I would watch it almost everyday on my DVR. When you’re on mega painkillers, it’s nothing but entertainment. I was catching up on this favorite show of mine to see what nutty thing they would do next. Olivia read the Secret and was creating a motivation board with pictures of all that she wanted out of life. On this board was a mad, cool car, a Savannah cat named Stiletto Daaahling, an apartment and new makeup brushes. She also had the long-term goal of creating her own makeup or fashion line. Apparently, in the book “The Secret”, the author talks about visualizing your goals, focusing on them all day and creating this board. By focusing your attention on these goals, you will manifest to come to be. So, back to the show, my darling Olivia got her apartment and her creepy boyfriend, Mikey, sent her the makeup brushes. I ask you this….who’s the crazy one? Really, Olivia and I aren’t that different besides her massive amount of Spandex that I could/would never wear outside of a gym.
Ahhh…meh oui. What about Paris? Well…that’s on my board. I want to take my daughter to Paris and see how beautiful this world can be. I want to travel. I want a happy family. I want to balance my budget and I really need to figure out how I’m going to spend the rest of my life living with a disability.
Your assignment…consider what you would put on your board? Even it’s just one small goal. The only thing that matters is that you say it aloud. Besides, who could it hurt? It’s kind of nice to dream and hope again.

May 25, 2011

Budget busters and PT

by Living with RSD: what comes next?


These topics seemingly don’t go together. But, in my warped mind, they do. Today was my second to last day of physical therapy. During my 3 month long, long stint in PT, I learned a few things about myself. One, I hate PT. Nothing personal. I just don’t like having the restrictions and the pain of rehabing the very parts of your body that are actual pain. The goals for me were to focus on my back, upper and lower, arms, core and legs. Like me, you might be wondering what’s next? Second, for the first time in my life, my goals weren’t to focus on returning to premorbid. They were about returning to functional. I am a fall risk because I am unsteady on my feet. I probably will continue to be unsteady on my feet. Now, let’s get to how this relates to budgeting. I went the gym last week. Loved every minute of it. I spent three days recovering from my two hours of work outs this weekend. I need to make very conscious decisions about what I choose to do with my body and the implications and paybacks.
Now, I blew my budget this past month on a reallly cute sweater. I love my new sweater. It wasn’t in my budget. It really compliments my wardrobe and was worth it. I need to focus the same intensity towards my body. Perhaps I should create a body budget that looks at my energy levels and the choices that I make. I tend towards this approach because it doesn’t take away my right to choose. There are some things, such as work or paying bills, that I have to do. But, there are some things, like Zumba and getting cute sweaters, that I choose to do and will make work.
So, my new approach, as I exit PT on Friday, is a body budget based on my energy levels and right to choose. May be this weekend I’ll create that budget. BTW, in the meantime, I’m going to Zumba this weekend!

May 24, 2011

My goals

by Living with RSD: what comes next?

I’ve been very neglectful, my dear friends. Studies say that if you want to reach your goals, you must write them down. I was motivated to start this blog for two specific purposes. I have had my life turn around, upside down. I have done the surgeries, prescriptions and medical treatments. It’s now time to move on and get a new start. So, my goal is two-fold.
1) I want to explore my spiritual and emotional recovery. This blog is a means of expressing the emotions that I keep bottled up. Also, I want to consider other types of treatment, most specifically Reiki. I just want to get complete and cleared of all of the other treatments first. The gym is my world and my emotional healing. I believe that part of my emotional recovery is starting back at the gym.
2). Looking for some stronger financial well being. I can’t earn more money, so this means I’ll be looking more closely at my bills to be sure that I know where my money is going and why. I have downloaded a budgeting app and also have started clipping coupons. My first grocery outing was grossly unsuccessful. Spent $250 only to save $5 with coupons. I did much better the next time. Spent $79 and saved $7. I’ll keep moving forward.

So, those are my goals. I have two deadlines. One, by July 15th, I need to summarize my progress for a work contest. Prize for winning…trip to St. Thomas for one week. I won’t be finding any coupon for that. My other date is by years end, 2011. I want to take stock and see how far I’ve come. I’ m guessing that spiritual growth and awareness won’t come to me in three months, so I owe it to myself to continue to grow.

Those are goals. $12 saved so far. Too bad I didn’t budget for a manicure.

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May 20, 2011

Raise your glass

by Living with RSD: what comes next?
Raise your glass

Raise your glass

Don’t adjust your clocks. It really is 5 in true morning. Insomnia strikes again. I recently saw a newscast that talked about momsomnia about mother’s who don’t sleep because of household worries. I have the not so unique qualifier of living with a disability added onto that. Pain wakes me up. I am robbed from sleep when it’s time to take a new pill, to turn over because my incisions are hurting or because my dreams betray me and remind me of the loss that I’m not supposed to talk about. You see, when colleagues and family ask how I’m doing, they want me to be okay so badly that I don’t have the heart to tell them the truth. But, to my unknown readers and the entire web word, I will give you the truth that I can’t tell them. My body is healing, undoubtedly. But, I realize that I no longer have control of this body. My RSD has taken over. I can’t wear the shoes that I want, the beautiful heels that are a symbol of days gone by. I can’t type some days because my hands are shaking so badly that I can’t hit the correct keys. I can’t walk some days without falling. People will tell you that they are there to pick you up. They aren’t. They are there to hope that you get up on your own. Doctors have discharged me, only to say that I have they have done all they can do. The cruel reality is that this is true. They have. But they haven’t returned me back to normal. This reality is supposed to be my new normal and I fight it with everything that I know how to do. This isn’t the reality that I want. So, what’s girl to do?

Sleep evades me just like my beautiful Calvin Klein peep toe sandals with the 4 inch heel. In my sights, but something that I can’t have. There is no one in control. The RSD took that from me. Every question, every decision that I make, now has the question “Will my RSD let me do this, let me wear this?”.

Medical specialists have long talked about phantom limbs. It’s a medical condition seen in patients who are recent amputees or who experience sudden paralysis due to a trauma, such as a stroke. Patients still can feel the arm or leg that was removed, but their mind hasn’t caught up with their body. They still reach for things, try and use it, and believe that it’s there. I feel like I have four phantom limbs, but they are there. Everyone can see them, but I’m not in control of them. I remember the day that I made the decision for the first implant. My daughter reached out to hold my hand. I had extreme sensitivity to touch at the time. When she reached for me, the pain shot through my arm. My arm, the same one in which my mind wanted to reach for her and hold her forever, my RSD decided this same arm would swipe at her to push her away. She fell back on the sofa, shocked. She was 6 at the time. The worst part about it was that she said “It’s okay Mom. I’m sorry that I tried to touch you”. She wasn’t being snarky. She meant it. But, it wasn’t okay. I looked at her and realized that my ability or inability to cope with these changes in my body weren’t all about me. That was the day I decided to pursue these doctor recommendations. I don’t regret any decisions that I have made. I regret that I had to make them.

So, how do you heal….mind, body and soul, when your body can no longer be what your mind and soul believes and needs it to be? I don’t have these answers. Apparently, I have inherited my mother’s need to look at the silver lining. The secret is that no one, including myself, has the control over their body that they think they do. Otherwise, no one would be overweight, have diabetes or experience heart attacks or strokes. The difference between them and me is that I have the cruel realization that I’m not in charge. My RSD is.

To quote one of my favorite songs Raise Your Glass by Pink…
So raise your glass if you are wrong in all the right ways.

May 17, 2011

Here comes the rain

by Living with RSD: what comes next?

I’ve always loved rainy days. Something about them seems refreshing….like a renewal. I’ve had a really few sad days lately. I’m not sure that I could articulate way. I just feel a large loss in my life. It’s almost that now the surgeries are over, I have time to feel sad about them. I’ve been trying to draw parallels to the rain. Without rain, there would be no flowers, no washing away of the pollen. I don’t know if we would appreciate the sun quite as much, if we didn’t have some rain. But, rain it is. There is a lot of beauty in the rain as well. May be these periods of sadness are also not that bad. Perhaps it is just something that we have to endure until the sun comes back to remind us that it’s alright…

May 15, 2011

Mixed blessings

by Living with RSD: what comes next?

I went to a baptism this morning. Baptisms always get me to thinking about renewals and original sin. Not to get too religious, some people believe that you are born a sinner by the flawed human nature. This pastor talked about how you are born with the word of God within you, as well, and if you listen and do the word of God, you will be blessed. Now, whatever version of God you choose to believe in, or not to believe, blessings was the word the really caught me. Can you honestly say that you can recognize the blessings that do exist in your life? Three years ago, I was in a car accident that radically changed how I can live my life. It didn’t change who I am. As I am now trying to cope with living with a disability, I have more trouble recognizing these blessings that must be there. I don’t feel unblessed, but I am not sure that I am feeling too blessed in my life. May be today serves as a reminder to look more carefully.

May 14, 2011

Connecting with others

by Living with RSD: what comes next?

One of my therapists, Leta, gave me the name and number of client who also has a neurostimulator implanted. She was looking to connect with others who have implants. This was the first time that I have spoken to another implanted patient. Her implant is for a facial nerve. The leads are on her upper lip and above her brow. They connect behind her left ear with the wire connecting to the battery above her breast bone. She is having some troubles adjusting to the implant. She is four weeks after the surgery. We shared our stories and journeys that have lead to these decisions. I spoke to her for about 45 minutes. While I spoke to her, I felt good. I was finally doing something to acknowledge and accept what has happened to me. It felt a little less that something bad happened to me, but rather I was doing something about the bad thing that happened. I felt very positive.
After I got off of the phone, I cried for hours. It was a level of acceptance that I haven’t felt yet. I have spent the last few years in and out of doctors, but I haven’t really heard what they were trying to tell me. It’s been a long journey medically, but I haven’t started the journey to heal my soul. May be this is the first step.

May 11, 2011

First day back at the gym

by Living with RSD: what comes next?

So, I survived my first day back at the gym, Zumba. It was nice to see the girls, but something sad about my limitations. I didn’t know the routines and felt frustrated by what I couldn’t do. I realized that it wasn’t apparent to everyone else that I was struggling. That was almost worse. It is a double-edged sword. On the one hand, I don’t want people to know that I have a disorder, on the other hand, it’s hard to be judged when people don’t know your limitations. I kept telling myself that it’s in my head. People don’t come to the gym to judge me. I’m having a hard time letting go of running, but I guess that is for another day. For today, I need to celebrate surviving my first day back at the gym.