You find yourself debating the idea of purchasing groceries for your family, or seeing a doctor for a recurring cough that seems to be emitting parts of your lower lung. You'd borrow money from someone in your family, but everyone is on edge about losing their jobs, and you are not sure yours is going to be around much longer either. We're cutting coupons, waiting extra days between laundry so we can use less electricity because the cost of running our lights has gone up so much. Every where we turn we're being told how much worse it's going to get. Yet, we're coughing, and can't figure out what we should do about seeing a doctor.
Not too many years ago, former President Bush stated that those who were unable to afford health insurance or medical care from a primary physician should just go to the emergency rooms and then the hospitals could sort out the mess. In February of 2005, Reuters posted stories that more than 50% of the bankruptcies in the United States were filed due to medical expenses. In 2006, it was reported in several news sources that medical billing errors, and down right scams helped create an unmanageable number of cost overages. Certainly double and triple billing of patients has become common practice as medical billing services hand off account files to debt collection agencies even AS patients are in good standing with payments. We're being billed out of good health care.
Visiting an emergency room should be considered in the same way someone would consider dialing 9-1-1. If you can get to a doctor who has a regular rapport with you, knows your history, and can tell the difference between your "normal ranges" and the ranges another patient may have as normal then do so. An emergency room isn't the best answer. So many patients are using this system as the only form of health care- causing those who have true emergencies undue pain, long waits before seeing a professional, and in some cases, death.
If you have to hit the emergency room because it's after hours, or your doctor can't see you for several days, or you are no where near home and are very sick- then you can do something NOW to plan for THEN. Put a copy of your medical records on CD or on a Jump Drive. Add any tests, copy your food diaries, mark down any doctors' contact information you've got. And, if you have a living will, advance directives, or even a designated patient advocate- put that on the drive, too. Keep this with you on your key chain or on a necklace- and you WILL have better care in emergency situations. If you use a service such as GoogleHealth or MedAlert, copy those files too. ANYTHING that gives your emergency room doctor more information regarding your health is FAR better than just hoping he or she will understand from the symptoms at hand.
Jump drives are available for under $5 for enough space that can hold dozens of xray screenshots, medical files, legal files, and you can load them up via Mac, Windows, or even Linux. Save your files as TEXT or as RTF, (rich text format), or even better print them as PDF. You can get free PDF programs such as BullZipPDF from SourceForge.net. If you update your files EVERY time you come back from a doctors office, you can ensure that your current medications are listed.
Include NON-prescription medications, supplements and even if you're on a diet such as Nutrisystem. All of this affects your care in an emergency. And, ensure that the contact information for your next of kin, friends, and even someone from work is listed in case you need to have people come to the hospital and speak on your behalf. I have marked a jump drive with MEDICAL ALERT, in a permanent marker. The drive has a loop which I've attached to the Keychain Loop of my wallet. When someone checks for my ID or Insurance, the drive is available, as well. I do NOT include my social security, mother's maiden name, or specific information that would cause identity theft or worse. But, my health information is stored- and that could save my life.
The Emergency Room system isn't reliable. A person who comes in on an ambulance with a sprained ankle may end up seeing a doctor before the woman who came into the waiting room complaining of chest pains. A man bleeding may be seen before a child with a high fever. You can never tell from one day to the next nor one hospital to the next what the priorities of being seen will be. Then, once you see a doctor you may end up with a new resident, or you may end up with the head of surgery. The wait may be just a few minutes, or a few hours. One doctor may think you need to be admitted, another thinks you just need antibiotics. Having files with you can help you.
There are other options. In the last ten years, "Urgent Care" centers have become part of our neighborhoods. You can see doctors there after hours, and get to see the same doctors, so they are familiar with your history. Local pharmacies are offering "Quick Clinics" so you can see a dcotr if you are coming down with a flu or cold, but can't see your regular doctor for several days. Medical Schools open up outreach clinics, and there are even clinics that drive to you. Some of these services cost far less than standard emergency room fees, and still others are free.
If you have a community center, local hospital, school district, or even a public housing office near by, look in your weekly calendar section of your paper, Craigslist, or even the newsletters. There are free health services offered for neighbors, seniors, the disabled, caretakers, single parents, children. Dental schools offer discounts. The United Way lists free counseling centers, discount health care centers, and even local health spas and gyms have screening days. If you are sick, can't afford a regular doctor, but need care- check your local calendar for FREE or reduced cost options. I worked at a company about 20 years ago that even gave us free Diabetes, weight management, and heart exams because it wanted to retain a healthier, happier employee. Those days may be long gone, or you may be missing out on an employee benefit you may not even be aware exists.
Today's questions- When cutting costs, do you use Online health services or do you prefer to see an emergency room doctor? Is someone in your family aware of where you keep health information, or legal papers, in case you are unable to answer doctors questions? Where do you go to when you need to see a doctor after hours, or when you can't get an appointment?
Monday, March 30, 2009
Monday, March 23, 2009
Developing Tolerences for Medications
Over the last seven years I have been taking Morphine S04, also known as MS-Contin. It is given to alleviate pain, and is on a time release. From the start, when I was on 30 mg twice a day until today, when I'm on 80mg twice a day, I've developed a tolerance for the drug- so much so that although I do see differences when I am delayed in taking the pills, I also find that I'm in far greater pain now than I have been in years. Every few years I get x-rays that determine the extent of the joint damage Ehlers-Danlos has taken, and in that time, I also get re-evaluated for pain medications.
It is true that the difference before the pharmaceutical and now is the ability to walk or not. I have a motorized wheelchair at the ready, and as I type this blog my left shoulder is working its way back into the socket. For those of us dependent upon pain medication, the ability to perform simple tasks is often an indication of how well the pain is managed. No one has ever said to me, "Oh you're high!", or "You seem a bit out of it", because the pain medication does its job. It isn't designed to be a recreational activity for me- or millions of others.
But, our bodies develop tolerances to long term medications. Women who take birth control to help with break-through bleeding find that after a few months, or years, the symptoms return. Someone who was able to wake up after a cup of coffee may find it takes up to three to feel that same way later in life. And, those who are on opioid medications also find that after time, the body develops an ability to reconnect with the pain. There is often an additional prescription or recommended drug given for the pain that occurs between doses, and many times, this increases side effects, and may prove to be less than useful in assisting against the searing, throbbing, or piercing sensations.
Some doctors will attempt to offer several options to handle the pain-between-dosages. In my case, it was first a simple Naproxen. This over-the-counter solution does wonders for my headaches, and if I have a cup of tea- I'm set to go for the next few hours. But that soon lost its effectiveness. I was put on Hydrocodone, also called Lortab or Vicadin. The side effects made it fairly difficult to appreciate the pain-killing properties. Then I was given Oxycodone. Now most pharmacists will say, "Morphine and Oxy don't mix", but pain specialists seem to believe that is an error, and if taken as directed, and blood is monitored, the patient should be okay.
This combination worked for me for about two years, until a few months back when I was finding that it was far more difficult for me to move each day. Now that I'm in my mid-forties, I'm finding that age plus dislocations is a difficult combination. The xrays showed that I've got several sockets that are shrinking, and that isn't allowing me to recover from the bone and joint issues as quickly. My doctor and I discussed other options, and I'm scheduled to see a rheumatologist, but in the meantime, I'm now on an Immediate Release version of the Morphine, which I take every few hours between the long-term dosages. Because I've grown a strong tolerance for the drug, the idea that a similar formula should work well seemed logical.
But that does not take into account the renewal of side effects. In the first few days, I noticed a remarkable change in pain relief, but I also noticed that some of the issues that appeared included nausea, loss of appetite, and an almost PMS-like feeling just before the next dosage is due. In a few days, I should develop enough tolerance of this new form that this reaction will abade, but in the meantime, it's the miserable feeling between then and now. My doctor is working to find the correct long term dosage so I don't have to take any more break-through pain medication again. This will be a welcomed relief, eventually.
Today's questions- What do you find has been your greatest relief in building up tolerances to medications? How do you handle the initial side effects? What medications would you rid yourself of if you could?
It is true that the difference before the pharmaceutical and now is the ability to walk or not. I have a motorized wheelchair at the ready, and as I type this blog my left shoulder is working its way back into the socket. For those of us dependent upon pain medication, the ability to perform simple tasks is often an indication of how well the pain is managed. No one has ever said to me, "Oh you're high!", or "You seem a bit out of it", because the pain medication does its job. It isn't designed to be a recreational activity for me- or millions of others.
But, our bodies develop tolerances to long term medications. Women who take birth control to help with break-through bleeding find that after a few months, or years, the symptoms return. Someone who was able to wake up after a cup of coffee may find it takes up to three to feel that same way later in life. And, those who are on opioid medications also find that after time, the body develops an ability to reconnect with the pain. There is often an additional prescription or recommended drug given for the pain that occurs between doses, and many times, this increases side effects, and may prove to be less than useful in assisting against the searing, throbbing, or piercing sensations.
Some doctors will attempt to offer several options to handle the pain-between-dosages. In my case, it was first a simple Naproxen. This over-the-counter solution does wonders for my headaches, and if I have a cup of tea- I'm set to go for the next few hours. But that soon lost its effectiveness. I was put on Hydrocodone, also called Lortab or Vicadin. The side effects made it fairly difficult to appreciate the pain-killing properties. Then I was given Oxycodone. Now most pharmacists will say, "Morphine and Oxy don't mix", but pain specialists seem to believe that is an error, and if taken as directed, and blood is monitored, the patient should be okay.
This combination worked for me for about two years, until a few months back when I was finding that it was far more difficult for me to move each day. Now that I'm in my mid-forties, I'm finding that age plus dislocations is a difficult combination. The xrays showed that I've got several sockets that are shrinking, and that isn't allowing me to recover from the bone and joint issues as quickly. My doctor and I discussed other options, and I'm scheduled to see a rheumatologist, but in the meantime, I'm now on an Immediate Release version of the Morphine, which I take every few hours between the long-term dosages. Because I've grown a strong tolerance for the drug, the idea that a similar formula should work well seemed logical.
But that does not take into account the renewal of side effects. In the first few days, I noticed a remarkable change in pain relief, but I also noticed that some of the issues that appeared included nausea, loss of appetite, and an almost PMS-like feeling just before the next dosage is due. In a few days, I should develop enough tolerance of this new form that this reaction will abade, but in the meantime, it's the miserable feeling between then and now. My doctor is working to find the correct long term dosage so I don't have to take any more break-through pain medication again. This will be a welcomed relief, eventually.
Today's questions- What do you find has been your greatest relief in building up tolerances to medications? How do you handle the initial side effects? What medications would you rid yourself of if you could?
Thursday, March 19, 2009
What is Talk and Die Syndrome?
It wil be on the cover of dozens of magazines over the next few weeks, with the loss of the beautiful, talented Natasha Richardson. Yet, it wasn't talked about as much when Sam Kinison died over a decade ago. He seemed to be handling a head-on collision fairly well, was talking to his brother, then the talk became confused, and then he died. Mrs. Neeson even told the ski instructor jokes about her mistake and fall, and apparently shoo'd away the idea of seeing a hotel doctor until she started to feel head pain. By then, the swelling in her brain had done more damage than could be repaired.
Our brains have no nerve endings to feel pain. When we get headaches, it's not the brain that is aching, it's the tissues around it, the muscles, the sinus cavities, and even the skullcap. The skull is constructed to provide a protective layer of bone around our brains, and there is also small space between the brain and the skull allowing for minor swellings in case of injury. But, when the swelling is too much, the tissue around the skull responds with pain. Some people have brain trauma that is so severe they don't realize it until something catastrophic happens. Brain injuries are often diagnosed well past the time when people can have full recovery.
In the last few years the show Mystery Diagnosis on Discovery Health, has featured several illnesses that people have survived that could have had dire consequences. One woman had brain fluids leaking from part of her skull. She tasted strange metallic flavors, but no doctor could find the issues she was having. Her head hurt especially when she was subject to pressure changes, like in airplanes or hiking. Any one of these flights could have killed her. It was her persistence to seek help that finally got her an answer, and required her undergoing multiple surgeries to patch this leak.
In another tale, a man had water in his ear, and would experience dizziness. After several years of issues, he found out that part of his brain had swelled so much it was leaking into other parts of his head. A young girl had an accident during her teen years, and only a decade or more later was given the news that her illness was due to a pituitary injury. Yet, sudden trauma can confuse us because our brains feel no pain. And, we are unable to tell people that we are experiencing brain injuries if we have no symptoms. People may notice us slurring our speech, or even responding slowly, yet we assume we are fine. In fact, we may be experiencing stroke.
There is a reason why ambulances are called to any car accident. If a person has hit her head on an airbag, a steering wheel, or even the back of her car seat, she may have some trauma that will not show up for days. EMT's are trained to ask specific questions, and to look into a victim's pupils to see the responses. If there is the slightest chance there is brain trauma, the victim will be taken to a hospital and given a CATscan, MRI, or even a test that measures epilepsy or sleep responses. They're not trying to bilk you, they're trying to ensure no injuries are hidden. Many people lose their lives weeks, months, or even years after an accident simply because they refused to go to a hospital.
There were no less than 20 emails to me in the hours that Natasha Richardson went into the hospital. No one was asking about gossip and silliness- they wanted to know how common it is to die from an accident as minor as a ski slope fall. I don't have numbers and stats on that, and I am sure the magazines and news wire services are going to do a substantial amount of reporting. I do know the under-reported incidents are very high since hospitals are no longer required to do autopsies after deaths. I also know that in the last thirty years, more men have died from brain related injuries simply because they do not go to the doctors as often as women do.
Talk and Die Syndrome is a common issue with brain trauma. The victim may have bumped his head on a shelf, or had something fall on him at work. For the next few hours he will appear to be fairly normal, but when he gets home from work, his wife will notice that he seems to be daydreaming, or that he seems to mispronounce words. Some people will have emotional changes, and seem to have mood swings. Then they start to feel, in some instances, but not all, that they have a headache, or are nauseous. They'll lie down- or take a pain med, which hides symptoms further. Aspirin, the blood thinner and pain reducer may end up making it worse. Because it thins the blood, more flows into the skull cavity. The swelling and blood have nowhere to go, and the pain intensifies. This is usually when a doctor or ambulance is called, and by this time, unless drastic measures are taken to relieve brain pressure, it may be too late.
Being a self-advocate is REQUIRED of anyone experiencing any form of injury. If you feel you are probably over-reacting when it comes to a head injury, there is no such thing. You could be saving your life. You could be saving yourself from years of disability. If you fall and feel the impact from your spine to your head, you should see a doctor before dismissing the possibility that you have harmed yourself. The doctor is happy to say "Oh, you're probably fine" and send you on your way. It's up to us to insist we get care for injuries. It's better to have a medical file that has a clear test, than a mortuary file that lists a preventable cause of death.
Was Ms. Richardson's death preventable? Possibly, but it's not clear how fast the injury happened to her, how much injury she may have suffered in the past, or if her trauma was the result of this one incident or of years of incidents. For some people,it can be a matter of minutes from the impact to their demise, and for others, it may take several incidents over several years. Talk and Die Syndrome can kill someone within moments, even if the patient seems fine and normal for hours. The damage that is fatal is done and nothing can change it.
So, today's questions- What can you do to protect yourself from head trauma? Were you in any accidents and refused medical care? How important is it for a doctor to take tests even if the signs are pointing to "normal" after an injury?
Our brains have no nerve endings to feel pain. When we get headaches, it's not the brain that is aching, it's the tissues around it, the muscles, the sinus cavities, and even the skullcap. The skull is constructed to provide a protective layer of bone around our brains, and there is also small space between the brain and the skull allowing for minor swellings in case of injury. But, when the swelling is too much, the tissue around the skull responds with pain. Some people have brain trauma that is so severe they don't realize it until something catastrophic happens. Brain injuries are often diagnosed well past the time when people can have full recovery.
In the last few years the show Mystery Diagnosis on Discovery Health, has featured several illnesses that people have survived that could have had dire consequences. One woman had brain fluids leaking from part of her skull. She tasted strange metallic flavors, but no doctor could find the issues she was having. Her head hurt especially when she was subject to pressure changes, like in airplanes or hiking. Any one of these flights could have killed her. It was her persistence to seek help that finally got her an answer, and required her undergoing multiple surgeries to patch this leak.
In another tale, a man had water in his ear, and would experience dizziness. After several years of issues, he found out that part of his brain had swelled so much it was leaking into other parts of his head. A young girl had an accident during her teen years, and only a decade or more later was given the news that her illness was due to a pituitary injury. Yet, sudden trauma can confuse us because our brains feel no pain. And, we are unable to tell people that we are experiencing brain injuries if we have no symptoms. People may notice us slurring our speech, or even responding slowly, yet we assume we are fine. In fact, we may be experiencing stroke.
There is a reason why ambulances are called to any car accident. If a person has hit her head on an airbag, a steering wheel, or even the back of her car seat, she may have some trauma that will not show up for days. EMT's are trained to ask specific questions, and to look into a victim's pupils to see the responses. If there is the slightest chance there is brain trauma, the victim will be taken to a hospital and given a CATscan, MRI, or even a test that measures epilepsy or sleep responses. They're not trying to bilk you, they're trying to ensure no injuries are hidden. Many people lose their lives weeks, months, or even years after an accident simply because they refused to go to a hospital.
There were no less than 20 emails to me in the hours that Natasha Richardson went into the hospital. No one was asking about gossip and silliness- they wanted to know how common it is to die from an accident as minor as a ski slope fall. I don't have numbers and stats on that, and I am sure the magazines and news wire services are going to do a substantial amount of reporting. I do know the under-reported incidents are very high since hospitals are no longer required to do autopsies after deaths. I also know that in the last thirty years, more men have died from brain related injuries simply because they do not go to the doctors as often as women do.
Talk and Die Syndrome is a common issue with brain trauma. The victim may have bumped his head on a shelf, or had something fall on him at work. For the next few hours he will appear to be fairly normal, but when he gets home from work, his wife will notice that he seems to be daydreaming, or that he seems to mispronounce words. Some people will have emotional changes, and seem to have mood swings. Then they start to feel, in some instances, but not all, that they have a headache, or are nauseous. They'll lie down- or take a pain med, which hides symptoms further. Aspirin, the blood thinner and pain reducer may end up making it worse. Because it thins the blood, more flows into the skull cavity. The swelling and blood have nowhere to go, and the pain intensifies. This is usually when a doctor or ambulance is called, and by this time, unless drastic measures are taken to relieve brain pressure, it may be too late.
Being a self-advocate is REQUIRED of anyone experiencing any form of injury. If you feel you are probably over-reacting when it comes to a head injury, there is no such thing. You could be saving your life. You could be saving yourself from years of disability. If you fall and feel the impact from your spine to your head, you should see a doctor before dismissing the possibility that you have harmed yourself. The doctor is happy to say "Oh, you're probably fine" and send you on your way. It's up to us to insist we get care for injuries. It's better to have a medical file that has a clear test, than a mortuary file that lists a preventable cause of death.
Was Ms. Richardson's death preventable? Possibly, but it's not clear how fast the injury happened to her, how much injury she may have suffered in the past, or if her trauma was the result of this one incident or of years of incidents. For some people,it can be a matter of minutes from the impact to their demise, and for others, it may take several incidents over several years. Talk and Die Syndrome can kill someone within moments, even if the patient seems fine and normal for hours. The damage that is fatal is done and nothing can change it.
So, today's questions- What can you do to protect yourself from head trauma? Were you in any accidents and refused medical care? How important is it for a doctor to take tests even if the signs are pointing to "normal" after an injury?
Monday, March 9, 2009
Why Xrays?
At 8 A.M., I walk into the Women's Clinic at the Veteran's Clinic, expecting nothing in particular. This weekend was wrought with painful moments, with the shoulders each taking turns over which would pop out the farthest. Then, migraines hit with fervor, so I was fairly incapacitated for the entire 72 hours. This morning, I expected nothing. For years I had strolled into these buildings, hoped for some assistance, and was taken through the systematic methodology of "First let's try this.." as is the rules of the Veteran's health system. But today, I expected nothing, and got a doctor who listens.
Several weeks back, another doctor, my former "regular" one, ordered X-rays which were mandated prior to any pain medication changes. The FDA is scrutinizing a manufacturer that provided Oxycodone to the hospitals, and clinics, and therefore, my pain medications were reduced. At the same time, she orders Xrays to provide me with a cause to visit the VA's pain specialist. Reduction of pain meds, xrays, then pain specialist. Seems like an illogical step to me. Also, I was given the name of a local rheumatologist who is well-versed in Ehlers-Danlos, and figured he would probably appreciate these scans, so I willingly went along with the idea.
The Xray center is just downstairs from the Women's Clinic. When I walked into the office today, my new "regular" doctor, Dr. Valerie Schram, sat at her desk, looking at my reports. But, not just the reports from the radiologist, but the weight fluctuation, the medications, the history of visits, and oh, yeah, the blood levels that confirmed Hashimoto's Disease. This is the same doctor who, after seeing me gain and lose upwards of 40lbs in a single month suggested I may have a thyroid disorder SIX years ago... but was dismissed by the then, Regular doctor. She was trying to help me years ago. And, after my last visit with the Regular Doctor, I gave a sigh, walked into the business office, and asked to be switched to the one person in the system who seemed to understand at least part of what I was going through.
The former doctor sat with me for less than 10 minutes each visit, making empathetic commentaries, and yet, never quite did anything more than offer me more pills. This doctor looked at the prescriptions, and said, "oh, I see you're not taking antidepressants anymore?" showing me that she was truly reading the file rather than thinking about the previous patients' diabetes, and future patient's flu shots. Dr. Schram paid attention to me, as a person. And, after we talked about the issues with medications, and the reason why I elected her over the previous "regular" doctor, I asked about the xrays.
The first thing she said was, "We need to control your pain, and I think the best way we can do that is after the appointment with the rheumatologist." But she didn't just leave it at that, she said, "Until then, we need to find out what the correct dosage of your medications is NOW." Then she went through and handed me a new pain medication prescription that wasn't a "break through pain" one, or a "just in case" one. It's a testing prescription that allows me to increase or decrease my current morphine levels, so she knows what the correct dosages for me are, without guessing. After that, she read through the xray results. Not just skimming, she read through the notes, and locations of the issue. We are now aware, together, that my hips, hands, and wrists, and yes, even shoulders, have progressively been getting worse, by about 7-13% since the last set last spring.
There aren't any breaks, and there are no noticeable cracks in the joint sockets, which is great news. But there are spurs, and swellings, and other weird stuff that we get with a disease that makes you a private circus. On Friday, I pick up the CD of the images so that the new rheumy can check them out. But this doctor listened, and paid attention to the long term issues, and seems to get it. The xrays were something she had to have just to put me into the pain management program, anyway, but the idea that she's actively inolved in trying to make the pain bearable is a welcomed change.
The Ehlers-Danlos does cause remarkable changes in skeletal structures. In the exam room, I was twisting my elbow almost 80 degrees out of place when they took the first shots of it. On the report the phrase, "no obvious dislocation" made me laugh. I guess it's a normal thing to have someone's hand upright and elbow facing backwards when getting pictures done. But, the rheumy should know what the images really show. I've been given body scans, and MRI's, Cat and Pet scans. Kind of like an Animal Planet show, without the tails, although I suppose I do have tales, afterall. In the joint mobility spectrum, not having the pictures would make it harder for most doctors to see the issues faced by those of us with sublux and dislocation issues. But, since the tendons, muscle, and joint tissue hardly shows on these, it's likely I'm going to have more scans. I'll be sharing those with you, too.
Today's questions- How did you know you found the RIGHT doctor? What tests do you find reassuring to your condition? Do you feel like you need a pain management specialist to assist you?
Several weeks back, another doctor, my former "regular" one, ordered X-rays which were mandated prior to any pain medication changes. The FDA is scrutinizing a manufacturer that provided Oxycodone to the hospitals, and clinics, and therefore, my pain medications were reduced. At the same time, she orders Xrays to provide me with a cause to visit the VA's pain specialist. Reduction of pain meds, xrays, then pain specialist. Seems like an illogical step to me. Also, I was given the name of a local rheumatologist who is well-versed in Ehlers-Danlos, and figured he would probably appreciate these scans, so I willingly went along with the idea.
The Xray center is just downstairs from the Women's Clinic. When I walked into the office today, my new "regular" doctor, Dr. Valerie Schram, sat at her desk, looking at my reports. But, not just the reports from the radiologist, but the weight fluctuation, the medications, the history of visits, and oh, yeah, the blood levels that confirmed Hashimoto's Disease. This is the same doctor who, after seeing me gain and lose upwards of 40lbs in a single month suggested I may have a thyroid disorder SIX years ago... but was dismissed by the then, Regular doctor. She was trying to help me years ago. And, after my last visit with the Regular Doctor, I gave a sigh, walked into the business office, and asked to be switched to the one person in the system who seemed to understand at least part of what I was going through.
The former doctor sat with me for less than 10 minutes each visit, making empathetic commentaries, and yet, never quite did anything more than offer me more pills. This doctor looked at the prescriptions, and said, "oh, I see you're not taking antidepressants anymore?" showing me that she was truly reading the file rather than thinking about the previous patients' diabetes, and future patient's flu shots. Dr. Schram paid attention to me, as a person. And, after we talked about the issues with medications, and the reason why I elected her over the previous "regular" doctor, I asked about the xrays.
The first thing she said was, "We need to control your pain, and I think the best way we can do that is after the appointment with the rheumatologist." But she didn't just leave it at that, she said, "Until then, we need to find out what the correct dosage of your medications is NOW." Then she went through and handed me a new pain medication prescription that wasn't a "break through pain" one, or a "just in case" one. It's a testing prescription that allows me to increase or decrease my current morphine levels, so she knows what the correct dosages for me are, without guessing. After that, she read through the xray results. Not just skimming, she read through the notes, and locations of the issue. We are now aware, together, that my hips, hands, and wrists, and yes, even shoulders, have progressively been getting worse, by about 7-13% since the last set last spring.
There aren't any breaks, and there are no noticeable cracks in the joint sockets, which is great news. But there are spurs, and swellings, and other weird stuff that we get with a disease that makes you a private circus. On Friday, I pick up the CD of the images so that the new rheumy can check them out. But this doctor listened, and paid attention to the long term issues, and seems to get it. The xrays were something she had to have just to put me into the pain management program, anyway, but the idea that she's actively inolved in trying to make the pain bearable is a welcomed change.
The Ehlers-Danlos does cause remarkable changes in skeletal structures. In the exam room, I was twisting my elbow almost 80 degrees out of place when they took the first shots of it. On the report the phrase, "no obvious dislocation" made me laugh. I guess it's a normal thing to have someone's hand upright and elbow facing backwards when getting pictures done. But, the rheumy should know what the images really show. I've been given body scans, and MRI's, Cat and Pet scans. Kind of like an Animal Planet show, without the tails, although I suppose I do have tales, afterall. In the joint mobility spectrum, not having the pictures would make it harder for most doctors to see the issues faced by those of us with sublux and dislocation issues. But, since the tendons, muscle, and joint tissue hardly shows on these, it's likely I'm going to have more scans. I'll be sharing those with you, too.
Today's questions- How did you know you found the RIGHT doctor? What tests do you find reassuring to your condition? Do you feel like you need a pain management specialist to assist you?
Tuesday, March 3, 2009
Charting Tests, Getting Food Right
I've mentioned in other posts about the importance of blood testing regardless of how you feel. The best doctors will take a baseline test, and better doctors will take a minimum of one test per quarter to ensure you are tracking bilirubins, CBC, and other counts that may end up being major problems, or solutions, down the line. I have found many free sites which let you keep track of medications, and have also posted about these. I use Google Health, as it is accessible to both myself and my doctor's health plan. I did a yearly check of the changes in my charts and I discovered something that my doctors may have missed.
Over the last few months, the tests that show the issues within my heart, and kidney have had some large number changes- at a steady rate. From the first to the most recent, I know now that when I began a particular treatment, the heart began reacting differently. Triglycerides, lymphocytes, and even cholesterol have greatly changed, and it seems to be coinciding with one medication that I've not been happy taking- morphine. I went from relatively insignifcant, unremarkable numbers to fairly noticeable jumps, and it's been a steady 3-4% change per month. Long term use of this medication is affecting me, and now the blood tests are confirming this.
Because the numbers are just barely within the 'normal ranges' I still have the ability to assist in getting them back to a level that will bring fewer red flags to a cardiologist. Here's the homework, and here's the research coming into play. I understand that to counter some of these numbers, I need to improve Potassium levels, among other minerals. I need to supplement with either a stronger nutritional plan, and return to the Statins which I was cutting back on over the last six months.
The studies of statins over the last ten years has been a bit of a circus. They're a miracle drug. They cause strokes. They're responsible for saving lives. They're making patients appear to have Alzheimer's. People are as confused as researchers and the only people clear on the issue seem to be in marketing departments. BUT, the truth is, statins have done more for the advancement of issues than they have done harm for millions of people. http://www.medicalconsumers.org/pages/cholesterol_skeptics.html
Now in my case, where I'm in control of MY health, I have elected to return to Zocor, (simvastatin), and to start on a regular intake of Omega Oils. Yes, flaxseed, fish oil, and in gel capsule format to ensure they're reaching my bloodstream. I've done enough research to know that most capsules and hard tablets aren't digested completely, and much of the vitamin and supplements in these forms pass through the system. I've also increased Vitamin D, and Calcium levels of the supplements I've been taking.
Over the next few months, the results of many patient studies with Calcium and Vitamin D will appear on the web, and in journals. You can read many of the tests in progress, which are promising better health for those who have hormonal issues. And, from some of these studies, you don't read about a miracle pill, or uper-Pharma which is behind the research. You're reading about scientists, biologists, and health professionals in the Cleveland Clinic, in Germany, in Italy, and in the United Kingdom doing independent discovery. Two articles explain the point far better:
http://ods.od.nih.gov/factsheets/vitamind.asp
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/
The nutrition I've had over the last forty-five years, much in my control, has been less than optimal. I spent entire YEARS not eating a single vegetable that wasn't part of a fried plate of food. When I was in the Navy, my primary source of dinner came from Kellogg's, or maybe Chick-Fil-A. Only on Fridays did I have steak and crab legs, as was the ship's usual fare. As much as the years of bad medicine harmed me, so as my own elected way of life. I was also killing myself by not being wise nutritionally. I can't put blame on a medical system when it was just idiocy leading me to the kitchen now and then.
It wasn't until I was in my 30's that I started to ensure I had lean proteins, salads, fresh fruit, and oh- yeah- steamed veggies rather than peanut-oil dipped fried goodness. I've never really been a french-fry fan, or a potato chip eater, but now I like yam fries, (baked), and occasionally I'll have a sliced avocado chip. (raw) But I wasn't able to absorb nutrients properly. By this time, I was on enough medications to prevent digestion of the minerals, vitamins, and even trace metals I needed. I started with Flintstone chewables- just to see if I could keep to a daily regime of something better. It worked. I became hooked on ensuring I had iron, calcium, and other nutrients as part of my daily "medication". But, I slacked.
And, I paid for it. Now, I need to be a lot more diligent in my nutritional care. I see how not minding the metals, the B's, the C's, and the minerals is affecting me far more than I have ever in the past because I can read my blood tests. I can see where the changes are, and I see that many of the changes seem to coincide not only with the increase of medications for pain, thyroid, and the decrease of statins, but also the decrease in my own regimented use of supplements. Over the next few months, I'll let you know how well they've done to improve or disprove the theory that my heart relies upon them.
Today's questions- What are you skimping in your diet? Have you had blood tests with remarkable changes and can track what medications you've taken during those changes? What can you do to improve your overall health with diet as a primary source?
Over the last few months, the tests that show the issues within my heart, and kidney have had some large number changes- at a steady rate. From the first to the most recent, I know now that when I began a particular treatment, the heart began reacting differently. Triglycerides, lymphocytes, and even cholesterol have greatly changed, and it seems to be coinciding with one medication that I've not been happy taking- morphine. I went from relatively insignifcant, unremarkable numbers to fairly noticeable jumps, and it's been a steady 3-4% change per month. Long term use of this medication is affecting me, and now the blood tests are confirming this.
Because the numbers are just barely within the 'normal ranges' I still have the ability to assist in getting them back to a level that will bring fewer red flags to a cardiologist. Here's the homework, and here's the research coming into play. I understand that to counter some of these numbers, I need to improve Potassium levels, among other minerals. I need to supplement with either a stronger nutritional plan, and return to the Statins which I was cutting back on over the last six months.
The studies of statins over the last ten years has been a bit of a circus. They're a miracle drug. They cause strokes. They're responsible for saving lives. They're making patients appear to have Alzheimer's. People are as confused as researchers and the only people clear on the issue seem to be in marketing departments. BUT, the truth is, statins have done more for the advancement of issues than they have done harm for millions of people. http://www.medicalconsumers.org/pages/cholesterol_skeptics.html
Now in my case, where I'm in control of MY health, I have elected to return to Zocor, (simvastatin), and to start on a regular intake of Omega Oils. Yes, flaxseed, fish oil, and in gel capsule format to ensure they're reaching my bloodstream. I've done enough research to know that most capsules and hard tablets aren't digested completely, and much of the vitamin and supplements in these forms pass through the system. I've also increased Vitamin D, and Calcium levels of the supplements I've been taking.
Over the next few months, the results of many patient studies with Calcium and Vitamin D will appear on the web, and in journals. You can read many of the tests in progress, which are promising better health for those who have hormonal issues. And, from some of these studies, you don't read about a miracle pill, or uper-Pharma which is behind the research. You're reading about scientists, biologists, and health professionals in the Cleveland Clinic, in Germany, in Italy, and in the United Kingdom doing independent discovery. Two articles explain the point far better:
http://ods.od.nih.gov/factsheets/vitamind.asp
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/
The nutrition I've had over the last forty-five years, much in my control, has been less than optimal. I spent entire YEARS not eating a single vegetable that wasn't part of a fried plate of food. When I was in the Navy, my primary source of dinner came from Kellogg's, or maybe Chick-Fil-A. Only on Fridays did I have steak and crab legs, as was the ship's usual fare. As much as the years of bad medicine harmed me, so as my own elected way of life. I was also killing myself by not being wise nutritionally. I can't put blame on a medical system when it was just idiocy leading me to the kitchen now and then.
It wasn't until I was in my 30's that I started to ensure I had lean proteins, salads, fresh fruit, and oh- yeah- steamed veggies rather than peanut-oil dipped fried goodness. I've never really been a french-fry fan, or a potato chip eater, but now I like yam fries, (baked), and occasionally I'll have a sliced avocado chip. (raw) But I wasn't able to absorb nutrients properly. By this time, I was on enough medications to prevent digestion of the minerals, vitamins, and even trace metals I needed. I started with Flintstone chewables- just to see if I could keep to a daily regime of something better. It worked. I became hooked on ensuring I had iron, calcium, and other nutrients as part of my daily "medication". But, I slacked.
And, I paid for it. Now, I need to be a lot more diligent in my nutritional care. I see how not minding the metals, the B's, the C's, and the minerals is affecting me far more than I have ever in the past because I can read my blood tests. I can see where the changes are, and I see that many of the changes seem to coincide not only with the increase of medications for pain, thyroid, and the decrease of statins, but also the decrease in my own regimented use of supplements. Over the next few months, I'll let you know how well they've done to improve or disprove the theory that my heart relies upon them.
Today's questions- What are you skimping in your diet? Have you had blood tests with remarkable changes and can track what medications you've taken during those changes? What can you do to improve your overall health with diet as a primary source?
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