It took me being on disability for almost ten years to learn to say NO to doctors and tell them that I'm still in pain. Especially since, with the way disability is set up, doctors have ALL the economic control in my life. They control my family's economic future, and mine.
In order to have some quality of life, I and my husband learned to stay on top of issues when we could. I didn't consciously mislead doctors. I was female and a people pleaser. You're taught from day one to make people feel better. In the show, House, he phrases it as everybody lies. I don't think it is so much that as it is that everybody has their perspective, including doctors. That's the hard one to get around. They are supposed to be there and unbiased to treat you. HA! As a migraneur I call Bullshit on the entire industry! I have had too many doctors in Emergency Rooms who have wanted me to put on a huge show of pain or have treated me as a drug seeker. I don't DO narcotics most of the time. They don't work well on migraines. They help with some of my other chronic pain conditions and I and my doctors have been discussing issues back and forth, but the current boogie man era of every one who is on a opioid is a drug seeker or drug addict is a crock of shit and it has been blown WAY out of proportion by a media that is looking for ratings. Responsible people who need pain relief were just barely being able to get it, and now it is becoming impossible again.
There are less than 1,000 Headache specialist neurologist in the United States currently. They have many other options to prescribe. And there are many people like me who have multiple pain conditions who aren't a one stop shop for easy answers. The human body is not a quick fix shop and the only way the doctor/patient relationship works is if the doctor actually listens to the patient and if the patient actually takes ownership of their health. After 20+ years I finally have. Some doctors find this VERY disconcerting. But my primary care doctor is an Internist at Oregon Health and Science University Hospital and carries a full load teaching and a full load of patients. He is one of the permanent doctors on staff so he has a huge load and he is very receptive to working WITH me to keep me as healthy as I can be. I have finally discovered that by being just a bit bitchy in my old age and refusing to let doctors or nurses put me off I get better care. I make sure I ask the questions. If I don't feel like I'm getting answers, I outline my concerns in an email to the doctor before my appointment so we can discuss it. And if I don't get taken seriously elsewhere, I follow up with my own doctor and ask him who WILL take me seriously.
But I've always wanted to suggest to them that they not prescribe any test however that they haven't experienced for themselves.
Most tests aren't too invasive or painful and don't do lasting harm and can be done to male or female, i.e. the mammogram, and if some of the doctors and technicians who where performing these tests had to go through the procedures at their own place of business those procedures would be FAR less dehumanizing.
I can tell you now that if a few more male doctors have to stand in a line wearing little pink half aprons over their Moobs (man-boobs) while waiting for the glass plates to squish them flat as they are told to cozy up to the cold @ss machine something would be done about the procedure *smirk*.
Friday, October 21, 2016
Sunday, October 16, 2016
Cognitive Clouds, Cobra and Bankruptcy
To try to explain how bad the cognitive fog can get when you are in so much pain that it's like a dentist's drill is going at your head the entire time you are awake or asleep, and you just want somebody to cut off your head to make it stop.
I was formally fired in 1992. I ran a unit as the technical lead working with mainframe and PC email systems that interconnected statewide over our wide area network and was heading the project to upgrade the system again. So I was VERY familiar with email. It was my preferred method of communication. Yet 6 years later when my old college roommate wanted to get ahold of me, I couldn't remember how to send an email or get into the programs.
I've studied calculus and differential equations but when my children were learning the times tables and factoring I couldn't remember the 7 or 8 times tables because they were, "filed," in a different area in my brain then the other times tables I learned as a child.
Pregnancy and its hormone overload in my body had placed me into a new headache type and placed me in chronic prodome state. What used to be called fugue state. A state in which I can be triggered by any of the triggers that would get me.
Nobody really explained to me why my cluster headaches were different and why I was almost insomnia's poster child with them, who constantly needed to keep my mind occupied to keep from obsessing on the severity of the PAIN.
Low light reading and playing stupid video games became my outlets when sleep was hard to come by. And I couldn't explain that my brain still worked at 900 miles an hour. It just couldn't be trusted to file things in memory correctly, and I didn't understand why the palliatives I'd learned for classic migraine didn't always help for the clusters I was now getting. It was exacerbated by my neurologist having to lighten and restructure her practice for health reasons for herself so that I was without a good anchor for dealing with this new type of headache. But before that happened we tried MANY things. I'm not sure she didn't see some of her future in me. since she was a professional and a migraneur as well. She was pregnant when she downsized her patient base so I've always hoped her migraines didn't get worse.
But she guided me through the initial steps of dealing with Chronic Daily Migraine. Which only needs to be 15 days a month. Go figure. I wish I only had headaches 15 days of the month...then maybe I could work, cause there are 12 weekend days in a month...hmmm.` Now 'chronic' migraines are sometimes diagnosed as 8 days or more a month for 6 months or more. At the point I was fired I was getting migraines 5 or 6 sometimes 7 days a week and had been for over a year. I had my husband and 2 tiny children to support. We had determined that by the time we paid for daycare, he would have been working for $1/hour and it than that to us to have family home with our children. But that made the assumption that I was okay to work.
We didn't expect pregnancy to trigger so many family illnesses so badly. Looking back, I'd have to say that it was massively exacerbated by the high stress nature of the way I approached my job, my life, hell, everything ... I believed in giving it my all and holding nothing back and so I had absolutely no reserves of strength or energy. I was getting classic migraines. I was getting clusters. I was getting icepicks. I was getting zigzags. I was getting sinus headaches and tension headaches and the dehydration from the spinal taps that were sometimes done. I could tell the difference on the rebounds.
I'd been raised in a family that firmly believed in the Calvinist work ethic and believed that working hard was the way to get ahead and that was what was important for your family. It wasn't important if you were happy, or if you were necessarily around your family though you were supposed to be a good parent in there somewhere. But it was imperative that you supply all material needs to your family so they were free from want and had a roof over their heads. I'm at the very youngest of what can be seen as the Baby Boomer Generation. Though most of my friends are Generation X'ers. My parents lived through the Depression and the World Wars and some of their attitudes about financial stability and not starving were passed down. I still keep a stockpile of canned goods that some Gen Xer's just don't understand.
I was lucky that I had taken out disability insurance because it kept us semi-solvent for the waiting year until disability kicked in. I was pretty much bed ridden as they tried various preventatives one after the other and we kept finding new ones that didn't work, or that my body became too conditioned too to work. In that time period the only insurance I could get was a continuation of my coverage under Cobra at almost $900/month and my prescriptions were running close to $1000/month. I had to stop getting the acupuncture treatments that actually helped the migraines and the weekly massages that actually helped the fibromyalgia. And my therapist that my insurance insisted I see, as well as the PT. I couldn't afford them anymore.
My disability insurance was only for 2/3 of my salary and the disability insurance I'd taken on my mortgage was 1 month short of kicking in. My retirement was about 3 months short. So I ended up with us ending up prescriptioned and insuranced right into homelessness and bankruptcy. Chase Manhattan was nice enough to foreclose on the house as part of the bankruptcy proceedings, We had no one who could take us in.
We were very lucky my parents agreed to help us by buying an RV we could stay in on their property while storing our stuff in their family room and den and we rented two storage units. Not that my mom let us sleep in the RV all that often. She didn't consider it warm enough for her grandchildren. I was very happy we were inside later on. my dad had a heart attack and my husband and niece were there to give CPR. It gave people time to say goodbye.
I was amazed we actually got a place to rent to us after the foreclosure and bankruptcy, but they did. So about 6 months after my dad passed, I and my family moved to be closer to my husband's job. Yes, he now was working, having decided that even though I was not at 100%, we couldn't make it on my disability alone with 2 children and the cost of my insurance and the cost of my meds. plus we had no coverage for him or the children.
I was still silly enough to be trying to be in charge of our monthly bills as I always had been and balancing our checkbook and accounts...what a mistake! After the 4th time I made over a $700 error and needed to have my mother bail us out because I couldn't add and subtract through the cognitive fog and pain (Imagine that dental drill with no pain killers and being half asleep ALL the time, or at least feeling that way, with your mind NEVER clear.) I passed the bills to my husband...that was an even BIGGER mistake. LOL He believes in paying bills as he sees fit, when HE wants to .... as he says, They'll still be there NEXT month. Aargh!
I was formally fired in 1992. I ran a unit as the technical lead working with mainframe and PC email systems that interconnected statewide over our wide area network and was heading the project to upgrade the system again. So I was VERY familiar with email. It was my preferred method of communication. Yet 6 years later when my old college roommate wanted to get ahold of me, I couldn't remember how to send an email or get into the programs.
I've studied calculus and differential equations but when my children were learning the times tables and factoring I couldn't remember the 7 or 8 times tables because they were, "filed," in a different area in my brain then the other times tables I learned as a child.
Pregnancy and its hormone overload in my body had placed me into a new headache type and placed me in chronic prodome state. What used to be called fugue state. A state in which I can be triggered by any of the triggers that would get me.
Nobody really explained to me why my cluster headaches were different and why I was almost insomnia's poster child with them, who constantly needed to keep my mind occupied to keep from obsessing on the severity of the PAIN.
Low light reading and playing stupid video games became my outlets when sleep was hard to come by. And I couldn't explain that my brain still worked at 900 miles an hour. It just couldn't be trusted to file things in memory correctly, and I didn't understand why the palliatives I'd learned for classic migraine didn't always help for the clusters I was now getting. It was exacerbated by my neurologist having to lighten and restructure her practice for health reasons for herself so that I was without a good anchor for dealing with this new type of headache. But before that happened we tried MANY things. I'm not sure she didn't see some of her future in me. since she was a professional and a migraneur as well. She was pregnant when she downsized her patient base so I've always hoped her migraines didn't get worse.
But she guided me through the initial steps of dealing with Chronic Daily Migraine. Which only needs to be 15 days a month. Go figure. I wish I only had headaches 15 days of the month...then maybe I could work, cause there are 12 weekend days in a month...hmmm.` Now 'chronic' migraines are sometimes diagnosed as 8 days or more a month for 6 months or more. At the point I was fired I was getting migraines 5 or 6 sometimes 7 days a week and had been for over a year. I had my husband and 2 tiny children to support. We had determined that by the time we paid for daycare, he would have been working for $1/hour and it than that to us to have family home with our children. But that made the assumption that I was okay to work.
We didn't expect pregnancy to trigger so many family illnesses so badly. Looking back, I'd have to say that it was massively exacerbated by the high stress nature of the way I approached my job, my life, hell, everything ... I believed in giving it my all and holding nothing back and so I had absolutely no reserves of strength or energy. I was getting classic migraines. I was getting clusters. I was getting icepicks. I was getting zigzags. I was getting sinus headaches and tension headaches and the dehydration from the spinal taps that were sometimes done. I could tell the difference on the rebounds.
I'd been raised in a family that firmly believed in the Calvinist work ethic and believed that working hard was the way to get ahead and that was what was important for your family. It wasn't important if you were happy, or if you were necessarily around your family though you were supposed to be a good parent in there somewhere. But it was imperative that you supply all material needs to your family so they were free from want and had a roof over their heads. I'm at the very youngest of what can be seen as the Baby Boomer Generation. Though most of my friends are Generation X'ers. My parents lived through the Depression and the World Wars and some of their attitudes about financial stability and not starving were passed down. I still keep a stockpile of canned goods that some Gen Xer's just don't understand.
I was lucky that I had taken out disability insurance because it kept us semi-solvent for the waiting year until disability kicked in. I was pretty much bed ridden as they tried various preventatives one after the other and we kept finding new ones that didn't work, or that my body became too conditioned too to work. In that time period the only insurance I could get was a continuation of my coverage under Cobra at almost $900/month and my prescriptions were running close to $1000/month. I had to stop getting the acupuncture treatments that actually helped the migraines and the weekly massages that actually helped the fibromyalgia. And my therapist that my insurance insisted I see, as well as the PT. I couldn't afford them anymore.
My disability insurance was only for 2/3 of my salary and the disability insurance I'd taken on my mortgage was 1 month short of kicking in. My retirement was about 3 months short. So I ended up with us ending up prescriptioned and insuranced right into homelessness and bankruptcy. Chase Manhattan was nice enough to foreclose on the house as part of the bankruptcy proceedings, We had no one who could take us in.
We were very lucky my parents agreed to help us by buying an RV we could stay in on their property while storing our stuff in their family room and den and we rented two storage units. Not that my mom let us sleep in the RV all that often. She didn't consider it warm enough for her grandchildren. I was very happy we were inside later on. my dad had a heart attack and my husband and niece were there to give CPR. It gave people time to say goodbye.
I was amazed we actually got a place to rent to us after the foreclosure and bankruptcy, but they did. So about 6 months after my dad passed, I and my family moved to be closer to my husband's job. Yes, he now was working, having decided that even though I was not at 100%, we couldn't make it on my disability alone with 2 children and the cost of my insurance and the cost of my meds. plus we had no coverage for him or the children.
I was still silly enough to be trying to be in charge of our monthly bills as I always had been and balancing our checkbook and accounts...what a mistake! After the 4th time I made over a $700 error and needed to have my mother bail us out because I couldn't add and subtract through the cognitive fog and pain (Imagine that dental drill with no pain killers and being half asleep ALL the time, or at least feeling that way, with your mind NEVER clear.) I passed the bills to my husband...that was an even BIGGER mistake. LOL He believes in paying bills as he sees fit, when HE wants to .... as he says, They'll still be there NEXT month. Aargh!
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