When you aren't sick, you can go about your day,and not take two seconds thinking about the things you do. But as I learned from an early age, when you have any kind of chronic condition, anything throughout the day takes a lot of thought, and the people around you take this for granted. The Spoon Theory is a great read on this.
And once I started feeling the effects of RSD, it only made it more important. The problem is, when you 'look normal', you have days that you want to 'feel normal'. And that can lead to some serious consequences.
Yesterday was one of those days.
I was feeling good. I had some pain, but manageable pain in my back, leg and arm. My house had acquired an accumulation of filth, because I hadn't been keeping up with the mess, and my partner is usually busy with work. I had reached my 'dirt tolerance'. With vacuum and broom in hand, I asked my partner to help me clean the house from top to bottom. We Spring cleaned the whole house, and I had to micromanage, being the control freak that I am.
Once finished, I sat, and the pain slowly began to grow through out the day. I began to regret doing some of the work- but at the same time it felt 'emotionally good' to have some senses of order back in my life.
And then the pain was so bad, I just sunk into the lazy boy chair, by leg up. I woke up in the dead of night, my chest and back in a pain I could not describe.
Today, I am still sore. I am very tired. Have a learned my lesson? For the most part. But there will still be days where I will need order, and need to feel 'normal'.
Sunday, July 18, 2010
Friday, July 16, 2010
Lack of Resources-
I spent yesterday looking through RSD pages online (my favorite), in hopes of finding a a specialist or center that would be more effective in my treatment. In one support group, the most common thing I read was- "don't let your doctor just put you on a some opiates, and forget you for a month or two". That rang too true to my ears.
Since being diagnosed this past Spring, I had only seen my doctor twice, and all he had done is recommend that my GP continue to prescribe me Percocet, and that I have 3 Stellar Ganglion Blocks (my second one was today).
I still haven't seen him since my RSD, or what I am certain is RSD, spread into my leg.
But I did finally locate a group that promotes RSD research and Legislative Change. Check it out. I found it helpful. It has great resources.
After a long night of intense pain, I woke up, and was denied breakfast. Luckily, the block was scheduled at 11AM, or I might have become ill tempered. My mother and I made our way to the out patient clinic, a 45 minute drive from our home, where sat in a overstuffed plastic chair, covered in heated linen.
About one hour later, I was wheeled into 'surgery', where they proceeded with the Stellar Ganglion Block. An overly creepy nurse would stroke my head, and tell me I was a 'good patient'. I better be, to allow a woman who just told me I was crazy to think I had RSD in my leg to shove a needle in the front of my neck, with no medication.
But I digress. I had been having chest pain for the past week. I was reading from the first site, where I get the most consistent information-
Since being diagnosed this past Spring, I had only seen my doctor twice, and all he had done is recommend that my GP continue to prescribe me Percocet, and that I have 3 Stellar Ganglion Blocks (my second one was today).
I still haven't seen him since my RSD, or what I am certain is RSD, spread into my leg.
But I did finally locate a group that promotes RSD research and Legislative Change. Check it out. I found it helpful. It has great resources.
After a long night of intense pain, I woke up, and was denied breakfast. Luckily, the block was scheduled at 11AM, or I might have become ill tempered. My mother and I made our way to the out patient clinic, a 45 minute drive from our home, where sat in a overstuffed plastic chair, covered in heated linen.
About one hour later, I was wheeled into 'surgery', where they proceeded with the Stellar Ganglion Block. An overly creepy nurse would stroke my head, and tell me I was a 'good patient'. I better be, to allow a woman who just told me I was crazy to think I had RSD in my leg to shove a needle in the front of my neck, with no medication.
But I digress. I had been having chest pain for the past week. I was reading from the first site, where I get the most consistent information-
The staging of RSD is not as critically done on the basis of dysfunction (stage I) meaning abnormal function of the sympathetic system in the extremity, dystrophy (stage II , meaning trophic and inflammatory changes, skin changes and other signs of inflammation), atrophy (stage III, meaning usually minimal degree of atrophy in the involved muscles), or stage IV (meaning disturbance of the immune system, suicidal attempts, stroke, heart attacks, intractable hypertension and chest pain, and in some cases development of cancer). The prognosis is more related to the temporal development of the above four stages.And there was more involving Stage Four-
Stage IV: Identifies the final stage of RSD / CRPS manifested by:1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes. This is in contrast to the opposite, up-regulated function of immune system in early stages.2. The hypertension in early stages due to alpha-1 up-regulation reverses to eventual exhaustion and to the common occurrence of orthostatic hypotension in this late stage. Blood pressure changes in this stage are due to autonomic failure. The failure of the sympathetic system exaggerates the response to drugs that lower or raise the blood pressure.3. Intractable generalized extremity and visceral edema involving the abdomen, pelvis, lungs, and extremities due to long-standing disturbance of sodium-potassium and calcium magnesium pumps usually left untreated for several years. The same organs may eventually be subject to multiple abscesses due to failure of immune function.4. Ulcerative skin lesions.5. High risks of cancer and suicide.6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.This late stage is almost the flip side of earlier stages, and points to exhaustion of sympathetic and immune systems. Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system.
These all led me to believe my symptoms were all related to the RSD and much more serious than I thought. I wanted to talk to my doctor. But he was not there today, as I was told he would be.
The Stellar Ganglion Block only increased my suspicions. So far, 4 hours after the procedure, I have had no chest pains. Is this a coincedence?
And the pain in my leg is significantly less. Do I wait until August to see my doctor, or do I switch teams, and start the trip almost 2 hours to get what could be better care. I would have to rely on my family for rides, but it would be for my family's best interest that I recieve better care. They are the ones that are truly suffering.
For me, I am learning to cope. I have a TENS machine for my really painful days. My son is content to play in his playpen and watch Sesame Street. I have a Ketamine cream. I am thinking about getting a cane so I am not hoping around on one foot.
But I don't want my coping to interfere with my family's happiness either. Any sign of stress on them, and I will call the other pain treatment physicality.
Thursday, July 15, 2010
My story-.
Everyone with RSD has a story. How the injury happened. How long they suffered before they were diagnosed. What limb and body parts have been affect by this chronic condition.
It was 2002, and my best friend was driving on aback road to get gas. It has just started to rain,and *Smith wasn't very experienced at driving. We went around a sharp corner, and he tap his break. I saw my life flash before my eyes,and the next thing I knew,we had spun into a telephone pole, on the passengers side.
Luckily I was wearing my seat belt. But little did I know that the minor whiplash I had encored would change my life forever.
Over the next few months, I suffered shoulder pain, more excruciating than I could possibly describe. I learn to cope with the pain, by lessening my daily activity, using heat.,and taking ibuprofen on a regular bases. The doctor I saw for my shoulder told my I might have injured my rotator cuff while sleeping, and sent me to physical therapy.
Four years later, the pain had only intensified. I was living now on medicare, which barely covered any of my health costs. My only option was to see a chiropractor. She would snap and massage my muscles, which helped me get through my sleepless night. I was on my third bed by now, trying to see if it would help my shoulder.
I told my doctor that I was getting numbness in my arm. She tested me for Lyme disease and when it came back negative,told me I must have had a vitamin B deficiency, and gave me a shot 'to help'.
Nothing was helping anymore. And I only help alone. I kept quiet,and learned to cope.
In 2003, I had become engaged to my wonderful partner, Steve*, and we decided to try and conceive. My seizures were pretty much under control, and we wanted to start a family. In September, Caleb* came into our lives, perfectly healthy.
And several months later, I was ready to figure out once and for all what was causing the pain in my left arm. I went through a total of 3 primary cares, 3 chiropractors, 2 orthopedic surgeons, 4 neurologists, 3 psychiatrists, and a physiotherapist before I was finally diagnosed with Reflex Sympathetic Dystrophy, 8 years after my initial injury.
A pain management doctor looked at all of my symptoms, all of my tests, and all of my information, and finally took the time to put all of the pieces together.
It has been very frustrating, not only for me, but my loved ones as well. But in the end, it has been worth it. Since the initial accident, my RSD has spread down to my left leg, and into my foot. I have trouble walking, and writing (I am left handed). I can only pick up my son for short amounts of time. My journey is far from over. And so my journal begins.
It was 2002, and my best friend was driving on aback road to get gas. It has just started to rain,and *Smith wasn't very experienced at driving. We went around a sharp corner, and he tap his break. I saw my life flash before my eyes,and the next thing I knew,we had spun into a telephone pole, on the passengers side.
Luckily I was wearing my seat belt. But little did I know that the minor whiplash I had encored would change my life forever.
Over the next few months, I suffered shoulder pain, more excruciating than I could possibly describe. I learn to cope with the pain, by lessening my daily activity, using heat.,and taking ibuprofen on a regular bases. The doctor I saw for my shoulder told my I might have injured my rotator cuff while sleeping, and sent me to physical therapy.
Four years later, the pain had only intensified. I was living now on medicare, which barely covered any of my health costs. My only option was to see a chiropractor. She would snap and massage my muscles, which helped me get through my sleepless night. I was on my third bed by now, trying to see if it would help my shoulder.
I told my doctor that I was getting numbness in my arm. She tested me for Lyme disease and when it came back negative,told me I must have had a vitamin B deficiency, and gave me a shot 'to help'.
Nothing was helping anymore. And I only help alone. I kept quiet,and learned to cope.
In 2003, I had become engaged to my wonderful partner, Steve*, and we decided to try and conceive. My seizures were pretty much under control, and we wanted to start a family. In September, Caleb* came into our lives, perfectly healthy.
And several months later, I was ready to figure out once and for all what was causing the pain in my left arm. I went through a total of 3 primary cares, 3 chiropractors, 2 orthopedic surgeons, 4 neurologists, 3 psychiatrists, and a physiotherapist before I was finally diagnosed with Reflex Sympathetic Dystrophy, 8 years after my initial injury.
A pain management doctor looked at all of my symptoms, all of my tests, and all of my information, and finally took the time to put all of the pieces together.
It has been very frustrating, not only for me, but my loved ones as well. But in the end, it has been worth it. Since the initial accident, my RSD has spread down to my left leg, and into my foot. I have trouble walking, and writing (I am left handed). I can only pick up my son for short amounts of time. My journey is far from over. And so my journal begins.
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