Archive for ‘Extended caregivers’

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.

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July 5, 2011

Look Ma…no hands

by Living with RSD: what comes next?

For the Fourth of July, a number of our neighbors set off fireworks. We are at the highest point between the mountains and the sea. My house and the house across the streets are the. To highest homes on the block. This makes for great firework watching. All over the long weekend, fireworks were set off to honor independence and freedom. Naturally, it got me to thinking about my deepest wish to be free from pain. I used to want it for one day. At this point, I’d settle for a few hours.

So, my lovely and wonderful neighbors across the street, the other highest point, asked us to come over to watch the fireworks….from their roof. Some people might think, okay, not too bad. But, you go up, crawl out the window, climb up the shingles, to the flat 20×20 highest point, down the back side and voila. I haven’t been so terrified in awhile. Now, I could hear my therapists saying both “Don’t baby it” and “Don’t fall. You’re not steady on your feet”. Somewhere between the babying it and the steadiness, I made it. And the view was perfect. Not so much the fireworks all around, but just claiming a little bit more of my independence everyday.

June 28, 2011

It’s a small world

by Living with RSD: what comes next?

Is Disney really the happiest place on Earth? Well..kind of. Disney did what no one else has been able to do, I really did forget my problems for a few days. I was brought back to reality when the pain killers wore off and my feet swelled up. I could have let it bring me down, but I realized that I had all of the tools with me. I had the medicine and the appropriate footwear, sure, but what got me through the week was me. It was my first time not being able to go on the rides. I was nervous about how I felt about it, but more nervous about how my children would feel about it. They did a great job. And what I missed was hearing my children laughing, or crying, on the rides. I wanted to be there with them, but in my own way, I was. I got to cheer them on and be there when they got off. Not only that…I was able to keep up with them walking, running and waiting in the park. Granted, the painkillers helped a great deal, but I did it! I felt like I proved to the kids that things might be different now, but it’ll all be okay. That did more for my recovery than any physical therapy, doctor or narcotic. So, things might be different, but it’s all going to be okay.

Back at home, I’m trying to keep the spirit of Disney with me. That spirit that our differences are what makes the world go around. One mouse did for me what no amount of painkillers or medications could do. I have a t-shirt and coffee mug to help me remember when I slip back to defeat and the blues of having this disorder. At the end of the day, I get to be me. My flawed self has nothing to do with the disorder and everything to do with my soul. It’s more important to focus my energy on rebuilding my soul and my body will follow.

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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 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 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.

May 9, 2011

Derby odds

by Living with RSD: what comes next?

I watched the Kentucky Derby the other day. I have to admit that I was rooting for Mucho Macho Man because I thought his trainer had a great story about beating the odds. It got me to thinking about my odds. Did I beat the odds or did I just come in last? Only a small fraction of individuals who sustain an injury get RSD. An even smaller amount of individuals with RSD have the disease sustained after 6 months. A smaller amount has it spread so that it’s in all of the limbs. I’ve always thought of myself as loosing this race, but may be I’ve actually won it. I’m doing okay. I can’t do everything that I did before, but I can still do some things. May be I could look at the brighter side. It’s certainly better than focusing on the dark cloud. Some food for thought. Glad I didn’t put any money down on Mucho Macho Man. She didn’t win the race, but she’s got a lot of heart.

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April 26, 2011

Party hard

by Living with RSD: what comes next?

We had two parties this weekend. One for a 50th wedding anniversary and the other an Easter party. I knew ahead of time that this would drain my energy, but it still comes as a shock to me. It was the first time that both of my families saw me since my last surgery. Massive storm fronts brought some much needed rain to the area and also brought my hand tremors back. I have a difficult time eating and using utensils. Naturally, both parties were buffet style. I managed to get away without spilling, but not without many stares.

I say all of this not for pity or because I feel bad about myself. The tremors don’t really bother me. I’ve figured out ways to manage with them. The stares are what I find difficult. They remind me that I should feel sorry for myself. That what I’m going through isn’t normal. It reminds me of the loss that I feel. I wish that I could say that I’ve resolved those feelings, but I haven’t.

I have a beautiful pair of Calvin Klein sandals with a heel that I bought in January after my second implant. I’m still working in PT to get in those heels. I really wanted to wear them this weekend. The loss that I feel/felt isn’t so much about the tremors. It’s more that I couldn’t get in those heels. I’m beginning to wonder if I ever will.

To go full circle, I wish that people wouldn’t stare. I wish that they would ask how I feel and what they could do to help. There is nothing that they could do. But , sometimes it’s nice knowing that they would be there to lend an ear if I needed it.

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