I'm a big advocate on Lupus and patients rights. Not all doctors are great listeners or note takers. If you have ever received your medical records and have read them carefully you'll be the first one to notice this.
It's always a good idea, when you have a doctor visit or have any medical tests done, that you receive a copy of your records for your personal files.
I once received my medical records from a "well known" university and famous doctor. On page 10 of "my" medical records I began reading and it said, "patient doesn't know her own name and I read further and the prescriptions weren't what I was taking. Upon reading the records weren't mine! Not only was that a HIPPA violation, but a violation of patient rights. This same doctor said I over exaggerated my condition(s).
It's quite funny that a doctor can be a "specialist" in a field, studying strokes, migraines, lupus, rheumatoid arthritis for years; yet not experience any of those symptoms, but tell me I over exaggerate my symptoms.
When I say I have 20+ severe migraines monthly and literally track them on a calendar and state that my migraine puts me to bed at least 2 hours during those 20+ days a month, I literally mean what I say. There are no exaggerations of what I am saying. If I say that my head feels like I have been hit by a 2x4, then that is what I mean. Why is it that a doctor who has not been in your shoes can actually judge you on your level of pain; because he/she was trained in that area for "x" amount of years?
Its frustrating to know that your specialist can't do anything further with you because he has utilized all means accessible to him. Meaning he doesn't know what else to do. Really? For the past 3 years I have had MRI's every 6 months, changed up migraine meds, found brain lesions, been tested for MS, and he can't do anything further so he pushes me off to another university where I wait until September?
In the meantime, I'm having lupus flares and that creates terrible migraines; which makes me bed ridden. People will ask, "how do you care for your 2 kids"? Well, I can't. They tend to themselves; as bad as that sounds. They know mommy is sick and mommy has a migraine. Pretty bad for a 3 and 5 year old to know this!
So...Tuesday evening the migraine was so intense it put me into the hospital. I hated being a burden on my family. Yes, that's exactly how I thought of it; as I'm a burden. Who wants their husband and 2 toddlers to take them to the hospital and wait? You have to be insane and especially if your children are as active as mine and bounce off the wall(s). Needless to say, I sent them home before I was seen.
The immediate care actually only "half" cared for me then they called the ambulance and sent me to the main hospital because they thought I was having another TIA. At this point I was thankful my family had left.
I wish migraines on no one.
June is migraine awareness month also! We need to find a cure for this as well!
http://www.migraineresearchfoundation.org/
I created a tracker/log for a lupus support group that I'm an admin for and this is a wonderful way to track your symptoms. This log/tracker can be modified to "tailor" your needs: http://excel.office.live.com/x/ExcelView.aspx?FBsrc=http%3A%2F%2Fwww.facebook.com%2Fdownload%2Ffile_preview.php%3Fid%3D314450641977517%26metadata&access_token=520086761%3AAVKa3xsD4DMcqLA_HN_c8L_uble3jGivOz4zY_jpvKpo-w&title=LUPUS+TRACKER+2012.xls
When I was diagnosed with Lupus, RA, Neuropathy, Ankylosing Spondylitis, Colitis and having had 4 previous TIA's; I had no idea about any of them. I had to do research on them and was terrified about all of them. I knew a few people that had gone through the above mentioned and the outcome wasn't good.
After doing research and knowing what I was dealing with, I knew what questions had to be asked and what meds were available to me.
I'm constantly going online to research the LFA. This organization is wonderful and the information is endless. I'm a big proponent of utilizing this website (www.lfa.org). Research is in need of funds to help us rid this horrible disease and to find a cure. Without funds, there will be no research and no cure; simple as that!
Please find me on FB http://www.facebook.com/regina.s.villalobos
It's always a good idea, when you have a doctor visit or have any medical tests done, that you receive a copy of your records for your personal files.
I once received my medical records from a "well known" university and famous doctor. On page 10 of "my" medical records I began reading and it said, "patient doesn't know her own name and I read further and the prescriptions weren't what I was taking. Upon reading the records weren't mine! Not only was that a HIPPA violation, but a violation of patient rights. This same doctor said I over exaggerated my condition(s).
It's quite funny that a doctor can be a "specialist" in a field, studying strokes, migraines, lupus, rheumatoid arthritis for years; yet not experience any of those symptoms, but tell me I over exaggerate my symptoms.
When I say I have 20+ severe migraines monthly and literally track them on a calendar and state that my migraine puts me to bed at least 2 hours during those 20+ days a month, I literally mean what I say. There are no exaggerations of what I am saying. If I say that my head feels like I have been hit by a 2x4, then that is what I mean. Why is it that a doctor who has not been in your shoes can actually judge you on your level of pain; because he/she was trained in that area for "x" amount of years?
Its frustrating to know that your specialist can't do anything further with you because he has utilized all means accessible to him. Meaning he doesn't know what else to do. Really? For the past 3 years I have had MRI's every 6 months, changed up migraine meds, found brain lesions, been tested for MS, and he can't do anything further so he pushes me off to another university where I wait until September?
In the meantime, I'm having lupus flares and that creates terrible migraines; which makes me bed ridden. People will ask, "how do you care for your 2 kids"? Well, I can't. They tend to themselves; as bad as that sounds. They know mommy is sick and mommy has a migraine. Pretty bad for a 3 and 5 year old to know this!
So...Tuesday evening the migraine was so intense it put me into the hospital. I hated being a burden on my family. Yes, that's exactly how I thought of it; as I'm a burden. Who wants their husband and 2 toddlers to take them to the hospital and wait? You have to be insane and especially if your children are as active as mine and bounce off the wall(s). Needless to say, I sent them home before I was seen.
The immediate care actually only "half" cared for me then they called the ambulance and sent me to the main hospital because they thought I was having another TIA. At this point I was thankful my family had left.
I wish migraines on no one.
June is migraine awareness month also! We need to find a cure for this as well!
http://www.migraineresearchfoundation.org/
I created a tracker/log for a lupus support group that I'm an admin for and this is a wonderful way to track your symptoms. This log/tracker can be modified to "tailor" your needs: http://excel.office.live.com/x/ExcelView.aspx?FBsrc=http%3A%2F%2Fwww.facebook.com%2Fdownload%2Ffile_preview.php%3Fid%3D314450641977517%26metadata&access_token=520086761%3AAVKa3xsD4DMcqLA_HN_c8L_uble3jGivOz4zY_jpvKpo-w&title=LUPUS+TRACKER+2012.xls
When I was diagnosed with Lupus, RA, Neuropathy, Ankylosing Spondylitis, Colitis and having had 4 previous TIA's; I had no idea about any of them. I had to do research on them and was terrified about all of them. I knew a few people that had gone through the above mentioned and the outcome wasn't good.
After doing research and knowing what I was dealing with, I knew what questions had to be asked and what meds were available to me.
I'm constantly going online to research the LFA. This organization is wonderful and the information is endless. I'm a big proponent of utilizing this website (www.lfa.org). Research is in need of funds to help us rid this horrible disease and to find a cure. Without funds, there will be no research and no cure; simple as that!
Please find me on FB http://www.facebook.com/regina.s.villalobos
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