The song of the night is “Ain’t Nothing Gonna Hold Me Down” by Men At Work.
I just got back from Dartmouth Hitchcock Medical Center in Lebanon, NH, a long trip from the Northwest parts of Vermont. So there I was, being poked and prodded like a science experiment by yet another doctor, and was told yet again that I have Complex Regional Pain Syndrome Type I, Reflex Sympathetic Dystrophy.
“Ain’t nothing gonna break my stride. Nobody’s going to slow me down, oh, no, I’ve got to keep on moving.”
And then I learned that though I may believe that Doctor’s tossed prescriptions at me, there was in fact a reason for such behavior, and that is because the number one method to treat CRPS is with Pharmacology and physical therapy. Trying in fact to find the perfect recipe for that patient to find their “cocktail” that will provide pain relief. We are still searching for my “cocktail”. And here I thought I was always a Mojito girl, turns out I could be a Bloody Mary girl or even a Martini girl. I knew already I was a Wii girl, my body feels the pain from the Wii exercises, but my swelling goes down.
“Ain’t nothing gonna break my stride. Nobody’s gonna slow me down, oh no, I’ve got to keep on moving.”
So my symptoms were analyzed today, I felt very comfortable with my Doctor, don’t misconstrue that statement, I feel very comfortable with my local Doctors, but it took a bit of time to get there with some and not with others. I had an immediate sense of positive vibes from this Doctor, and an immediate sense that he knew what he was he was doing, he knew CRPS. Thusly, I now know that I shouldn’t expect that just because I don’t have allodynia (sensitivity to touch or clothing), but I do have hyperalgesia (severe pain when only slight pain would be expected). I have swelling, mottled skin, skin temperature change, and pretty shiny skin too. We won’t get into the pain in moving the body part, the mood swings, and of course the sleeping issues. I know to stick to treatment plan, I know what I have to do, and so….
“Ain’t nothing gonna break my stride. Nobody’s gonna slow me down, oh no, I’ve got to keep on moving.”
So what's the next stepyou ask? The nex step is to stay on the Pharmacology program,and see how respond. Continue with my physica therapy program, continue with my craniosacal therapy, take up mirror box therapy, and let nothing break my stride or slow me down...
"I got to keep on moving"
Thursday, October 29, 2009
Thursday, October 22, 2009
"Say it if it's worth saving me" ~ Nickelback
I haven't blogged in awhile, I've been working on quite a bit. I just completed a short story that was entered into a competition through Good House Keeping.
I'm currently working on a novel with my friend Juli Manz.
Since I made my last post, much has happened, things of course are under constant change for people with CRPS.
So, the month of September was spend in a good deal of pain, trying craniosacral therapy to lessen it, and other holistic measures. http://www.craniosacraltherapy.org/Whatis.htm
Building up my medical team. I'm lucky to have a great Doctor that knows what RSD is about, and that here is no cure. He's goo to me, and willing to try these holistic measures to see what will give me relief. I've been doing craniosacral for about four weeks now. I notice a difference after I get the treatment, I'm more mobile, like I am in the summer, able to move easier, keep up with my kids while walking in the grocery store. I no longer rely on my cane, and I'm happier about that. It's a very gentle manipulation of my limbs, even the infected one, but it's like being able to stretch it after so long. It's a tingly release that feels good, and leaves me feeling good for about 5-6 days.
I go to PT twice a week, for measurements of my swelling, gentle balance exercises and a gentle massage. It helps with the swelling and keeping my foot from blowing up large and purple.
The chest pains I felt after the last epidural have not eased. It's believed that I have costrochondritis, an apparent inflammation of the cartilage in between my ribs. Well it's going on 8 weeks with this pain, and and nothing seems to be making it better. Then three weeks ago I started to note this pain in my triceps of my left arm, and them it started to spread down the arm,down into the elbow,and into the forearm and the finger. I noticed that it was getting harder to type, to grasp thing, or hold them for a long period of time. I called my doc, an now I have an MRI scheduled on my neck and lower back. A possible pinched nerve, a possible RSD spread, do we know hell no, not yet.
This is the stuff that makes a person so frustrated, and that's when I started to think about this song by Nickelback which brings us to the title of this post...
"Prison gates won't open up for me" Sometimes this disease feels like a prison. I'm trying to break out of, I know there is "no cure" and yet still I don't want to believe. I think maybe if I take more vitamin C and I do mirror box therapy I'll be cured. I can't give up hope, it's all I have. For me the "you" in this song that I'm reaching for, that I'm calling for is a cure.
Apparently an episode of House has both my Physical Therapist and ND have both decided that mirror therapy is the perfect cure or me so look at this http://www.youtube.com/watch?v=Pe8Y3YETnuY from youtube. My 5 year old and I looked at it, and he said to me, "You're not going to fall for that are you Mom?" I don't know if I'm going to fall for that son, but maybe my mind will. The possibilities that are now coming at me in abundance are scary. None of them are a get better quick scheme, 4 rounds of magnesium through an IV, 4 rounds of Ketamine, 12 weeks later you have the same results, or so the studies say. My ND says Magnesium, my PT says Ketamine, my Doctor has yet to weigh in.
The four walls I'm terrified of, are permanent disability. I'd rather collect my retirement and be able to work. I'm hoping once I get the pain under control that I can go back to living a normal life, I know I may be hoping against hope, but again it' all I have, it's all I'm reaching for. I want o go back to work. I want to play with my boys, and dance.
I head to the neighboring state later this week to their pain clinic to find out what they can do for me, I'd to Boston or NYC if they could give me some relief an return to normalcy.
I'm invoking my warrior spirit, and saying to Hope and Cure, "I'm calling, come please I'm calling"
I'm currently working on a novel with my friend Juli Manz.
Since I made my last post, much has happened, things of course are under constant change for people with CRPS.
So, the month of September was spend in a good deal of pain, trying craniosacral therapy to lessen it, and other holistic measures. http://www.craniosacraltherapy.org/Whatis.htm
Building up my medical team. I'm lucky to have a great Doctor that knows what RSD is about, and that here is no cure. He's goo to me, and willing to try these holistic measures to see what will give me relief. I've been doing craniosacral for about four weeks now. I notice a difference after I get the treatment, I'm more mobile, like I am in the summer, able to move easier, keep up with my kids while walking in the grocery store. I no longer rely on my cane, and I'm happier about that. It's a very gentle manipulation of my limbs, even the infected one, but it's like being able to stretch it after so long. It's a tingly release that feels good, and leaves me feeling good for about 5-6 days.
I go to PT twice a week, for measurements of my swelling, gentle balance exercises and a gentle massage. It helps with the swelling and keeping my foot from blowing up large and purple.
The chest pains I felt after the last epidural have not eased. It's believed that I have costrochondritis, an apparent inflammation of the cartilage in between my ribs. Well it's going on 8 weeks with this pain, and and nothing seems to be making it better. Then three weeks ago I started to note this pain in my triceps of my left arm, and them it started to spread down the arm,down into the elbow,and into the forearm and the finger. I noticed that it was getting harder to type, to grasp thing, or hold them for a long period of time. I called my doc, an now I have an MRI scheduled on my neck and lower back. A possible pinched nerve, a possible RSD spread, do we know hell no, not yet.
This is the stuff that makes a person so frustrated, and that's when I started to think about this song by Nickelback which brings us to the title of this post...
"Prison gates won't open up for me" Sometimes this disease feels like a prison. I'm trying to break out of, I know there is "no cure" and yet still I don't want to believe. I think maybe if I take more vitamin C and I do mirror box therapy I'll be cured. I can't give up hope, it's all I have. For me the "you" in this song that I'm reaching for, that I'm calling for is a cure.
Apparently an episode of House has both my Physical Therapist and ND have both decided that mirror therapy is the perfect cure or me so look at this http://www.youtube.com/watch?v=Pe8Y3YETnuY from youtube. My 5 year old and I looked at it, and he said to me, "You're not going to fall for that are you Mom?" I don't know if I'm going to fall for that son, but maybe my mind will. The possibilities that are now coming at me in abundance are scary. None of them are a get better quick scheme, 4 rounds of magnesium through an IV, 4 rounds of Ketamine, 12 weeks later you have the same results, or so the studies say. My ND says Magnesium, my PT says Ketamine, my Doctor has yet to weigh in.
The four walls I'm terrified of, are permanent disability. I'd rather collect my retirement and be able to work. I'm hoping once I get the pain under control that I can go back to living a normal life, I know I may be hoping against hope, but again it' all I have, it's all I'm reaching for. I want o go back to work. I want to play with my boys, and dance.
I head to the neighboring state later this week to their pain clinic to find out what they can do for me, I'd to Boston or NYC if they could give me some relief an return to normalcy.
I'm invoking my warrior spirit, and saying to Hope and Cure, "I'm calling, come please I'm calling"
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