Thursday, August 16, 2012
The Paradox of Pain Care in the USA
Living with chronic pain in the current American health care model today is a paradox. If I had access only to prescription pain medications, my pain would not be managed. If I had no access to prescription pain medications, my pain would not be managed.
To effectively manage pain, there is no single treatment tool that will ‘fix’ the problem. Sadly most healthcare plans only cover prescriptions, shots or surgery as long term chronic pain treatments. Physical therapy is limited to a handful of visits. Acupuncture, massage and other alternative treatments are not covered by healthcare plans and not accessible for people who are unable to pay the out of pocket expense for these valuable treatment options.
The people unable to pay or unable to speak for themselves are the ones that are vilified as drug seekers, addicts, malingerers and a drain on our society. Chronic pain has been criminalized to the point that people with pain who rely on valid prescriptions for their medications are blamed for the fatal or debilitating consequences of misuse and abuse actions of others who have acquired similar medications without valid prescriptions.
If the conversation and media focus is on the fatalities due to misuse/abuse, then we all miss out on identifying the problem. The problem is NOT that prescription medications (including opioids) are used to treat chronic pain. The problem IS that prescriptions are often the ONLY treatment option provided by most healthcare plans.
The solution is to ensure that all people at all socio-economic levels have access to all treatment options for effective pain management. Physical therapy should not be limited to a handful of visits. Acupuncture, massage, meditation, nutrition counseling, sleep facilitation, TENS units, relaxation training…. should all be offered as part of a comprehensive healthcare plan.
When I’m injured, taking medications damps down the pain enough for me to get some sleep, get to physical therapy, get acupuncture, and feed myself to start it all over again. Meditation, distraction and relaxation exercises keep my head clear, enable me to keep track of symptom variations (good and bad) and find some peace. Epsom salt baths, self-massage, heat and ice are all cost effective ways to help myself heal. All of this together gives me hope that I will be able to get back to a lower level of pain that doesn’t prevent me from moving forward.
I live with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that has caused painful joint dislocations since childhood. Chronic pain is a part of my life. It is not my whole life as long as I have access to all of the treatment options.
Monday, May 21, 2012
May EDS Awareness Month Interview Details
May is Ehlers-Danlos Syndrome Awareness Month check out an interview with Clair Francomano and myself this Sat., May 26 at 8 pm Eastern on WBAL Radio 1090 AM. You can listen live online by going to the website:www.paulchristomd.com, or access podcasts of the show after it airs.
Joint Hypermobility Pain: Ehlers-Danlos Syndrome
May 26, 2012 - 8pm Eastern
Harold Houdini, the famous escape artist probably had Ehlers-Danlos Syndrome (EDS). Many with extreme joint flexibility can voluntarily dislocate and relocate their joints due to EDS.
Unfortunately, 90% of those with EDS suffer from chronic pain for over 6 months, and pain is a cardinal feature of this syndrome. Extremely mobile joints, tissue fragility, and tendon and ligament injury can be caused by this genetic disorder of collagen formation.
We’re joined by Maggie Buckley, who shares her experience with joint hypermobility, accompanying pain, and methods of coping with EDS. Ehlers-Danlos expert, Dr. Clair Francomano tells us how best to manage this condition and what treatments may someday be a reality.
Joint Hypermobility Pain: Ehlers-Danlos Syndrome
May 26, 2012 - 8pm Eastern
Harold Houdini, the famous escape artist probably had Ehlers-Danlos Syndrome (EDS). Many with extreme joint flexibility can voluntarily dislocate and relocate their joints due to EDS.
Unfortunately, 90% of those with EDS suffer from chronic pain for over 6 months, and pain is a cardinal feature of this syndrome. Extremely mobile joints, tissue fragility, and tendon and ligament injury can be caused by this genetic disorder of collagen formation.
We’re joined by Maggie Buckley, who shares her experience with joint hypermobility, accompanying pain, and methods of coping with EDS. Ehlers-Danlos expert, Dr. Clair Francomano tells us how best to manage this condition and what treatments may someday be a reality.
Monday, April 30, 2012
Fit at 50
Great news today from the doctor; I'm cleared to resume driving. I'm considered 100% recovered from the small stroke I had on 15 February 2012.
Free to go where I want, when I want and to choose my mode of transportation. Moving forward at my own pace and on my own schedule is a great relief.
After some introspection I am able to say with confidence that I feel 10 years younger today than yesterday. You see, on February 15th I felt as though I had aged 20 years. A month later I felt 10 years younger since I had fully resumed all of my physical therapy exercise routines. I realized today that the extra 10 years I've been weighted down by came from explaining to everyone that I had had a stroke and needed a ride or some other assistance like picking up things at the store or mailing a package for me. The mantle of years was all in my head; my perception of myself, the image in my mind. Turns out it is true that you are only as old as you feel.
Living with Ehlers-Danlos Syndrome (EDS) all my life and using all of the assistive devices in my arsenal (wheelchairs, walker, canes, etc.) somehow didn't make me feel old. Saying "I had a stroke and am not cleared to drive yet." did make me feel old. Not helpless. Not needy. Just old. Now I can say with confidence "I had a small stroke at 50 and am fine now."
If you are thinking that I got in my van as soon as I got the OK and drove to Miglet's for a celebration cupcake you would be wrong. Well, partly wrong. I didn't go today. My plan for tomorrow is to drive myself to my acupuncture appointment in the morning before picking up a friend (one of my drivers) and go to Miglet's for lunch. Tomorrow, I'll be 12 again as I enjoy that cupcake.
Sleeping 7 hours straight without waking, a house full of flowers, a phone conversation with a friend...a beautiful day to enjoy.
Keep Moving Forward
Free to go where I want, when I want and to choose my mode of transportation. Moving forward at my own pace and on my own schedule is a great relief.
After some introspection I am able to say with confidence that I feel 10 years younger today than yesterday. You see, on February 15th I felt as though I had aged 20 years. A month later I felt 10 years younger since I had fully resumed all of my physical therapy exercise routines. I realized today that the extra 10 years I've been weighted down by came from explaining to everyone that I had had a stroke and needed a ride or some other assistance like picking up things at the store or mailing a package for me. The mantle of years was all in my head; my perception of myself, the image in my mind. Turns out it is true that you are only as old as you feel.
Living with Ehlers-Danlos Syndrome (EDS) all my life and using all of the assistive devices in my arsenal (wheelchairs, walker, canes, etc.) somehow didn't make me feel old. Saying "I had a stroke and am not cleared to drive yet." did make me feel old. Not helpless. Not needy. Just old. Now I can say with confidence "I had a small stroke at 50 and am fine now."
If you are thinking that I got in my van as soon as I got the OK and drove to Miglet's for a celebration cupcake you would be wrong. Well, partly wrong. I didn't go today. My plan for tomorrow is to drive myself to my acupuncture appointment in the morning before picking up a friend (one of my drivers) and go to Miglet's for lunch. Tomorrow, I'll be 12 again as I enjoy that cupcake.
Sleeping 7 hours straight without waking, a house full of flowers, a phone conversation with a friend...a beautiful day to enjoy.
Keep Moving Forward
Friday, April 20, 2012
The Paradox of Appearances
I'm a walker and I'm a roller.
People are often caught off guard when they see me in my wheelchair if they are used to seeing me out walking Fred around the neighborhood. Others think I have a twin sister - if they recognize me at all - when they see me walking Fred and are used to seeing me in town, on the bus, on BART in my wheelchair.
It is confusing. I get that. I'm sorry it has to be so confusing. Some things to keep in mind.
I use a wheelchair to protect and preserve my joints. Believe me, YOU are safer, when I use my wheelchair in public places that would otherwise require lots of standing or walking.
I walk because it is healthy. My physical therapy routine requires 2 hours per day of standing and walking. So I try to get it all done on the front end of the day. Walking is good for circulation, core muscle maintenance and to stave off osteoporosis.
Walking is also quite painful and uncomfortable for someone like me who lives with Hypermobility type Ehlers-Danlos Syndrome. For me it feels like I've strapped on shoes lined with pebbles to walk the length of a freight ship in rough weather. Yes, really, it feels like that. The ground doesn't feel level or even.
I also have a wheeled walker that I use in my home. It is narrower so it fits better through the narrow doorways.
These are assistive devices, aides some of the many things that keep me moving forward. None of these things make me sad or feel like any less of a person. They are what have opened the world for me. They get me where I'm going.
I'm always happiest when my feet don't hurt, aren't you? Please be happy with me walking, rolling, moving forward.
People are often caught off guard when they see me in my wheelchair if they are used to seeing me out walking Fred around the neighborhood. Others think I have a twin sister - if they recognize me at all - when they see me walking Fred and are used to seeing me in town, on the bus, on BART in my wheelchair.
It is confusing. I get that. I'm sorry it has to be so confusing. Some things to keep in mind.
I use a wheelchair to protect and preserve my joints. Believe me, YOU are safer, when I use my wheelchair in public places that would otherwise require lots of standing or walking.
I walk because it is healthy. My physical therapy routine requires 2 hours per day of standing and walking. So I try to get it all done on the front end of the day. Walking is good for circulation, core muscle maintenance and to stave off osteoporosis.
Walking is also quite painful and uncomfortable for someone like me who lives with Hypermobility type Ehlers-Danlos Syndrome. For me it feels like I've strapped on shoes lined with pebbles to walk the length of a freight ship in rough weather. Yes, really, it feels like that. The ground doesn't feel level or even.
I also have a wheeled walker that I use in my home. It is narrower so it fits better through the narrow doorways.
These are assistive devices, aides some of the many things that keep me moving forward. None of these things make me sad or feel like any less of a person. They are what have opened the world for me. They get me where I'm going.
I'm always happiest when my feet don't hurt, aren't you? Please be happy with me walking, rolling, moving forward.
Tuesday, March 6, 2012
Monday, March 5, 2012
Treasure
Being an independent sort of person makes it a challenge to ask others for help. I've learned some lessons on how to best to do this with dignity. I acknowledge that thinking "I don't want to be a bother" is flawed. Thinking about it instead as a social invitation has worked out really well. Since I generally feel fine and don't need assistance in the traditional sense of holding me up or doing things for me, I do need a ride, distraction or companionship. I've had the great fortune to spend true quality time with wonderful friends, neighbors and family members in the last couple of weeks instead of the quick check in via email or other less personal means in this digital age. What a treasure it is to give/receive a hug, to look someone in the eye, to hear someone tell their story. It is the connections we make that enrich us beyond material wealth.
This morning I walked with Maria. Maria is a frequent walker in our neighborhood usually seen with 12 year old black lab Willy. I was saddened to learn that Willy's health is failing due to a 'mass on his spleen' and no longer has any interest in walking with his people. Maria was ecstatic to be able to walk with Fred and I. We talked about health issues (canine & human) as we enjoyed Fred's antics. Maria introduced me to more people I've only seen in passing.
Thanks to friends like Maria, I'm back up to my pre-stroke walking time, distance, pace and frequency. My PT exercises are back up to pre-stroke levels with the exception of maximum weights for the free-weight portions. I was using 15 lb weights for 4 moves prior to February 15th. Now I'm at 5 lb weights and am expected to stop increasing it when I get to 10 lb weights in a couple of weeks.
Still no driving. Still no clue as to why it happened. Still wearing the cardiac event monitor. Still not staying still.
This morning I walked with Maria. Maria is a frequent walker in our neighborhood usually seen with 12 year old black lab Willy. I was saddened to learn that Willy's health is failing due to a 'mass on his spleen' and no longer has any interest in walking with his people. Maria was ecstatic to be able to walk with Fred and I. We talked about health issues (canine & human) as we enjoyed Fred's antics. Maria introduced me to more people I've only seen in passing.
Thanks to friends like Maria, I'm back up to my pre-stroke walking time, distance, pace and frequency. My PT exercises are back up to pre-stroke levels with the exception of maximum weights for the free-weight portions. I was using 15 lb weights for 4 moves prior to February 15th. Now I'm at 5 lb weights and am expected to stop increasing it when I get to 10 lb weights in a couple of weeks.
Still no driving. Still no clue as to why it happened. Still wearing the cardiac event monitor. Still not staying still.
Monday, February 27, 2012
Knowing My 'Normal' Saved My Life
I was in the hospital Wednesday (2/15) mid day until today (Friday, 2/17) mid-day. I suffered a small stroke. I was instructed to take it easy for the next week (no driving, no lifting, etc.) and take my time building back up to my previous activity level. We literally didn't know what had happened until about 2 hours before I was released. The small stroke was identified on an MRI taken the night of 2/16 that was reviewed early the following morning in detail.
The MRI report says:
"There is small focal area of restricted diffusion in the right inferior lateral temporal lobe with subtle gyriform area of restricted diffusion seen in the right insular cortex. There is no corresponding T2/flair signal abnormality. No susceptibility artifact on GRE sequence. The findings are consistent with an acute infarct.
The ventricles are midline, without mass effect, hydrocephalus or shift of midline structures. There is no extra axial-fluid collection. The flow voids are maintained in the major intracranial vessels at the skull base. The sella and cranial vertebral junction appear unremarkable. Globes, orbits and mastoid air cells are clear. Mild ethmoid sinus mucosal thickening.
**IMPRESSION**
MR findings consistent with an acute infarct in the right temporal lobe. No findings to indicate hemorrhage."
While walking Fred on the morning of Wednesday the 15th, I experienced chest pain and a shoulder/neck pain I'd been experiencing for a week off and on became constant. So I bribed Fred to come home early from the walk by holding Zuke's treats in front of him to get him to move forward. Once home I knocked on Karl's office door and told him to get dressed and ready to go because I thought I was having a heart attack and was going to call 911. I sat in my office chair by the front door, called 911 and told the dispatcher I thought I was having a heart attack. EMS arrived soon after, started oxygen, asked me tons of questions, and determined I needed to go to the hospital.
On the way out the front door, my left side went completely numb and I lost the ability to speak properly. As I collapsed into the arms of the firefighter behind me, I remember the paramedic looking up at my face and saying "Looks like she's stroking." The firefighters picked me up and put me on the gurney, did a stroke assessment test and then lifted me into the ambulance. Karl followed by car. Fred stayed home.
Karl knows more about what happened in the ER. Inside my head I could form thoughts perfectly and I was frustrated that I couldn't make the words come out. Nurses, doctors, lots of concerned faces, I got a bit confused, they took me to CT. I was so cold and shivering so uncontrollably on the way to CT that the nurse thought I was having a seizure as we exited the elevator and the transport tech rushed my gurney to the CT lab. There was a frenzy of activity with 2 nurses hooking me up to monitors and 2 techs wrapping me in warm blankets. They got me still, transferred me to the CT machine. As Ike, the CT tech was arranging me on the machine - he was gently aligning my head, neck and spine - I was suddenly speaking and the nurse, Danuta, hollered "YAY! She is too young for this." I laughed, everyone laughed and they got on with the scan.
On the way back to the ER, Danuta kept asking me questions and encouraging me to talk by asking me questions and telling me I was getting better, sounding clearer. When we turned the corner to go back into the exam room, I heard her say to several people "She is talking. It's a miracle. She is talking better." It was a development that proved to be a game changer as the ER team had been preparing to administer TPA, the FDA approved stroke intervention drug that works best within 3 hours of the onset of symptoms. Since I was talking and 'coming back' they cancelled that plan, administered aspirin and admitted me for 24 to 48 hours of observation with evaluation.
I was admitted to the Cardiac Monitoring Unit where the nurse handling my care focused on the neck, shoulder and chest pain. Three rounds of nitroglyceride and that stuff finally went away. My blood work was all negative for a cardiac event and she was trying to play it safe. These are the symptoms of anxiety and extreme anxiety is a precursor to stroke. Since Karl had arranged for our friends Tom & Lori to take care of Fred, Karl stayed with me to watch Survivor.
Two days of blood work, stroke assessment screenings by every specialty, an MRI and a treadmill stress test all resulted in a diagnosis of minor stroke. The objective assessment tools used by the occupational therapist determined that my left side is at 80 to 85% of the right side with regards to strength, coordination, etc. There is a good chance that it will return to 100% if all goes well.
Once home I began by walking 300 yards and increasing the distance walked by a factor of 1.5 to 2 until I was back up to an hour long walk with Fred on the 26th. Normal speech processing is restored. The minor foot drop on the left is mostly resolved. No hearing or vision loss.
At my first follow-up appointment on 2/23, things went great from my perspective as I'm cleared to be alone (no more babysitters) and clear to ride the bus (freedom). No driving for 2 to 4 weeks depending on the next round of blood work - coagulation tests. Blood pressure was 111/60 this morning. No problems with the Zocor yet. My doctor is concerned about how it will affect my liver and plans to order more frequent liver panels to track that. The low dose aspirin is going on also at 2 x 81 mg per day. They doubled my prilosec to 2 x day to tolerate that and are hoping for the best on the GERD situation. The doctor told me today that my BMI is normal and that I need to ramp back up on the PT exercise routine. He said I am at my maximum weight range and should be careful to stay below that. I will continue with acupuncture to help the healing and continue to manage my pain. The doctor and I agreed today that I'm 'practically' 100% back to normal.
I'll have more follow-up doctor appointments, a 30 day heart monitor and blood work over the next couple of months. I passed the first milestone of 48 hours without recurrence. The next milestone is 90 days. I'll be on daily aspirin and cholesterol lowering medications for the rest of my life.
It is like a complicated math word problem; After a minor stroke like this there is a 60% chance of recurrence within 90 days. Use of a statin drug is said to reduce the risk of a stroke recurrence by 70%. Women who experienced extreme hot flashes during menopause are at a higher risk of stroke. Migraneurs are at increased risk of stroke. Ehlers-Danlos syndrome increases the risk of stroke, particularly in the vascular type. Stroke risk is minimized by a low fat diet full of fruits and vegetables. Low cholesterol readings usually indicate a decreased stroke risk. What is the likelihood that Maggie will suffer another stroke? Hoping the answer is close to zero.
I was in the hospital Wednesday (2/15) mid day until today (Friday, 2/17) mid-day. I suffered a small stroke. I was instructed to take it easy for the next week (no driving, no lifting, etc.) and take my time building back up to my previous activity level. We literally didn't know what had happened until about 2 hours before I was released. The small stroke was identified on an MRI taken the night of 2/16 that was reviewed early the following morning in detail.
The MRI report says:
"There is small focal area of restricted diffusion in the right inferior lateral temporal lobe with subtle gyriform area of restricted diffusion seen in the right insular cortex. There is no corresponding T2/flair signal abnormality. No susceptibility artifact on GRE sequence. The findings are consistent with an acute infarct.
The ventricles are midline, without mass effect, hydrocephalus or shift of midline structures. There is no extra axial-fluid collection. The flow voids are maintained in the major intracranial vessels at the skull base. The sella and cranial vertebral junction appear unremarkable. Globes, orbits and mastoid air cells are clear. Mild ethmoid sinus mucosal thickening.
**IMPRESSION**
MR findings consistent with an acute infarct in the right temporal lobe. No findings to indicate hemorrhage."
While walking Fred on the morning of Wednesday the 15th, I experienced chest pain and a shoulder/neck pain I'd been experiencing for a week off and on became constant. So I bribed Fred to come home early from the walk by holding Zuke's treats in front of him to get him to move forward. Once home I knocked on Karl's office door and told him to get dressed and ready to go because I thought I was having a heart attack and was going to call 911. I sat in my office chair by the front door, called 911 and told the dispatcher I thought I was having a heart attack. EMS arrived soon after, started oxygen, asked me tons of questions, and determined I needed to go to the hospital.
On the way out the front door, my left side went completely numb and I lost the ability to speak properly. As I collapsed into the arms of the firefighter behind me, I remember the paramedic looking up at my face and saying "Looks like she's stroking." The firefighters picked me up and put me on the gurney, did a stroke assessment test and then lifted me into the ambulance. Karl followed by car. Fred stayed home.
Karl knows more about what happened in the ER. Inside my head I could form thoughts perfectly and I was frustrated that I couldn't make the words come out. Nurses, doctors, lots of concerned faces, I got a bit confused, they took me to CT. I was so cold and shivering so uncontrollably on the way to CT that the nurse thought I was having a seizure as we exited the elevator and the transport tech rushed my gurney to the CT lab. There was a frenzy of activity with 2 nurses hooking me up to monitors and 2 techs wrapping me in warm blankets. They got me still, transferred me to the CT machine. As Ike, the CT tech was arranging me on the machine - he was gently aligning my head, neck and spine - I was suddenly speaking and the nurse, Danuta, hollered "YAY! She is too young for this." I laughed, everyone laughed and they got on with the scan.
On the way back to the ER, Danuta kept asking me questions and encouraging me to talk by asking me questions and telling me I was getting better, sounding clearer. When we turned the corner to go back into the exam room, I heard her say to several people "She is talking. It's a miracle. She is talking better." It was a development that proved to be a game changer as the ER team had been preparing to administer TPA, the FDA approved stroke intervention drug that works best within 3 hours of the onset of symptoms. Since I was talking and 'coming back' they cancelled that plan, administered aspirin and admitted me for 24 to 48 hours of observation with evaluation.
I was admitted to the Cardiac Monitoring Unit where the nurse handling my care focused on the neck, shoulder and chest pain. Three rounds of nitroglyceride and that stuff finally went away. My blood work was all negative for a cardiac event and she was trying to play it safe. These are the symptoms of anxiety and extreme anxiety is a precursor to stroke. Since Karl had arranged for our friends Tom & Lori to take care of Fred, Karl stayed with me to watch Survivor.
Two days of blood work, stroke assessment screenings by every specialty, an MRI and a treadmill stress test all resulted in a diagnosis of minor stroke. The objective assessment tools used by the occupational therapist determined that my left side is at 80 to 85% of the right side with regards to strength, coordination, etc. There is a good chance that it will return to 100% if all goes well.
Once home I began by walking 300 yards and increasing the distance walked by a factor of 1.5 to 2 until I was back up to an hour long walk with Fred on the 26th. Normal speech processing is restored. The minor foot drop on the left is mostly resolved. No hearing or vision loss.
At my first follow-up appointment on 2/23, things went great from my perspective as I'm cleared to be alone (no more babysitters) and clear to ride the bus (freedom). No driving for 2 to 4 weeks depending on the next round of blood work - coagulation tests. Blood pressure was 111/60 this morning. No problems with the Zocor yet. My doctor is concerned about how it will affect my liver and plans to order more frequent liver panels to track that. The low dose aspirin is going on also at 2 x 81 mg per day. They doubled my prilosec to 2 x day to tolerate that and are hoping for the best on the GERD situation. The doctor told me today that my BMI is normal and that I need to ramp back up on the PT exercise routine. He said I am at my maximum weight range and should be careful to stay below that. I will continue with acupuncture to help the healing and continue to manage my pain. The doctor and I agreed today that I'm 'practically' 100% back to normal.
I'll have more follow-up doctor appointments, a 30 day heart monitor and blood work over the next couple of months. I passed the first milestone of 48 hours without recurrence. The next milestone is 90 days. I'll be on daily aspirin and cholesterol lowering medications for the rest of my life.
It is like a complicated math word problem; After a minor stroke like this there is a 60% chance of recurrence within 90 days. Use of a statin drug is said to reduce the risk of a stroke recurrence by 70%. Women who experienced extreme hot flashes during menopause are at a higher risk of stroke. Migraneurs are at increased risk of stroke. Ehlers-Danlos syndrome increases the risk of stroke, particularly in the vascular type. Stroke risk is minimized by a low fat diet full of fruits and vegetables. Low cholesterol readings usually indicate a decreased stroke risk. What is the likelihood that Maggie will suffer another stroke? Hoping the answer is close to zero.
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