The diagnosis
I'm glad I had someone with me when I finally saw the rheumatologist again yesterday after my unexpected absence this last 10 months.
I've had so many diagnoses in the last eight years, and we just discussed the insomnia I "woke up to" as a serious symptom for anyone, but most especially a bi-polar who has 24 hour drive-thru brain activity.
Dr. Kim had taken a whole slew of blood tests, but I had been side tracked with other more urgent issues, and when I did not return, I had no idea what these tests had revealed. There is a serious problem with communication between my doctors as these records should have reached my primary last November and only now am I hearing about the results.
Autoimmune has nothing to do with cars
With my first autoimmune diagnosis being Grave's Disease, I was told early on that if you have one you're likely to get another.
My endocrinologist told me this and had me tested for Lupus five years ago. Lupus is becoming big business and I was told that the rash on my neck which has stuck with me for six years connected me with the likelihood of this particular autoimmune disorder.
I really didn't necessarily care or believe that I had this, as I have been told I had cancer at least three times, and given the variety of illnesses suggested, I didn't trust the tests or the testers.
This time I "felt it" when Dr. Kim said that I have the Lupus markers and that I have had them for years now. He also told me I had a severe Vitamin D deficiency too.
So, in the last 10 months, my tests have revealed not the probable onset of these disorders, but further confirmation of their on-going damage to my body.
I thought there was a cure
Knowing that I had been tested, the tests used were highly sensitive, and I knew somewhere in my mind that I have autoimmune problems, but I didn't know how bad it would get until now.
The doctor apparently didn't realize that I had been sidetracked because of other issues such as Bradycardia, pain episodes that no medicine can relieve, skin molting and weight loss, inability to get my thyroid under control, and finally the gastric issues that left a hole in my hull.
He was not sensitive as I asked about the cure for Lupus. There is a new therapy that had been touted around the internet as a cure for Lupus and my cousin thought to tell me that they could "cure" me.
Self delusion was what is was for me. I could have looked it up and researched it, but I wanted a cure and maybe I wanted hope of a cure. Either way I had a different expectation than what I heard.
The doctor told me they could treat it with Plaquenil the old standard and some Vitamin D which if he had listened to me, I would have told him I was taking a Vitamin D supplement during the winter but he had his agenda I guess. What that means is that there is still miscommunication, again.
Dr. Kim, who had been more sensitive the first time I saw him, made it clear that he was irritated that I had not returned. He said I could have kidney failure and die, that I have to treat the issue.
Well, they could have sent that information to my doctor here in the mountains, an hour away from his office, but five minutes from my home. Not to argue, which is what I do best, but healthcare is failing because of issues such as simply getting these records to the right people in a timely fashion. If this is so serious, then why wasn't a phone call made or a why didn't they check in when I cancelled the appointment because I had been harmed at the local ER?
So, I was told that this therapy would not end the pain, and I would not work again. Yeah, I was glad I had someone with me it was good for me and it also helped me to not hit him for being so coldly direct.
I am lucky to have my friends
I went quiet which is something that isn't me, and my friends have said the right things, as they are my support, they know me and what to say and not to say. They are also my counselors who are continuing to learn about PTSD which is a huge challenge at this stage.
My mind made a note yesterday of the methods the people are using around me to refocus my attention off of certain issues. I am always amazed at the gifts people have to give that they are often unaware of and I try to make sure they realize their importance in my continued life as well as what they bring to the world in general.
I would not have made it thru this last round without all the great care that has been given to helping me back to my feet. My friends have given me hope always, my father has been my strength, and my family has been my backbone, as I walk thru the valley of darkness I shall not fear.
Shit, I'm scared to death, but I have faith, and it's been God given and God driven. I was in the waiting room while one of my friends attended her appointment, and a conversation began with a woman who has many things in common with me.
She was sitting in a wheelchair, and we laughed talking about general things such as the new wave of pain management clinics. I threw in a few caveats about the legal "crack" industry and then I realized there was something about her that I needed to know.
Ask and you shall receive
"If you don't mind me asking, why are you in that wheelchair?" I wondered, being slightly invasive for asking her that so directly.
Her list started with Lupus.
And when she was finally done her husband pointed out her skin allergies, as she had huge red holes in her chest caused only by the EKG stickers.
My mind was reeling as she told me last week that she almost died in the hospital. But then she and her husband started laughing. I said, "you certainly have a good attitude about this."
She simply explained that it had been going on for 10 years and that she had to accept it or continue to be angry. I told her I'm still in the angry stage, but I realize I do need to move on from here as it won't help to do anything but make me more stressed out.
I got up after the conversation and was compelled to give her a hug. Though her issues from health problems were many, her ability to communicate compassion was still intact. She had a great sense of humor, she acted kind, and in that one hour I had a renewed sense that I am not my illness.
This woman was not her illness and I won't be either. Oh, you watch me work doctor, whether it be from my bed I will still maintain to whatever level I can reach comfortably. (though it may be uncomfortable for some certain others)
It's a new day with an infinite number of things I can and will do....
Wednesday, August 17, 2011
Tuesday, August 9, 2011
Insomnia: the forgotten symptom
Taking over my own health
I took a drive to the Rural Health Clinic over the weekend to see and maybe feel if I could, the beginning of what has become a mudslide of health problems that started in my life.
Yes, I'm bi-polar, but does that mean I am more prone to other disorders, mental or physical, or really what I'm saying was it the chicken or the egg?
Did my bi-polar have anything to do with my thyroid problem for instance? The stress of being bi-polar could certainly link it to other problems, and here's the biggest problem I suddenly realized that I face: Insomnia.
For the last 8 years I have had differing levels of insomnia, meaning losing restful sleep so important to a BP, but also to any human being.
I could probably say that this symptom of itself has been a serious problem in my ability to regain my health. I've had autoimmune symptoms, and no diagnosis, but the problem I see is the fact that the symptom of lack of sleep, can exacerbate the rest of the problems.
Now I believe I may understand what happened with Michael Jackson
I've never had a sleep problem, I liked to sleep, and I made sure I had my 9 hours a night. It was clockwork back then, I didn't have to work to sleep, I just went to work and came home and fell asleep.
It seems easy enough, just like breathing, it was on it's own clock, the timer in my head, the Melatonin, all smooth sailing for 40 years.
And like a dark force had come over me, I couldn't sleep, my body went into stress.
Doctors immediately bring up "sleep aids" such as Ambien and I was given this drug at a time the insomnia was far beyond control of a drug.
The sleep pattern became so disturbed that I was in mania all the time, and I after a while I could not control it. In fact, my bird is living in a $800 dollar cage that was "free" to the crazy lady who nitpicked the imperfections of the cage, that the company decided to discontinue our purchase, and the cage was without cost.
But it's never without cost
As I was saying about Michael Jackson, he obviously suffered from insomnia to even consider using the particular drug, I don't have the name of it in front of me, but it's delivered via licensed anesthesiologist, to get to sleep.
His health, mental health was at stake, and the doctors even with all his money did not treat him properly.
I don't know anything about his potential for abuse of children, but I do know, that insomnia can cause a myriad of symptoms, including lack of self control.
When Jackson died, it was unnecessarily so in my opinion. He was sick, he couldn't sleep, his body had no recovery system to steady his mind and keep a balance in his body.
I could not handle the loss of sleep. I have a sleep journal my friend, not doctor, suggested I mark down the pattern which was occurring. Looking back in time, I see that I had a serious problem, and nothing on my medical records says "insomnia."
Why is insomnia not noted for it's debilitating side effects?
When I arrived here in this rural area above Bakersfield, I was sick, very sick, and probably slept one minute a night. But I was never sure, as I would writhe in bed, trying to get comfortable all night long. Suddenly I think the candle blew out for only a moment, then with a start, I would re-awake to the unreal, the one minute of sleep.
I assume my brain had to shut down or it simply began to shut down on it's own, to save my life.
Stress a killer and Insomnia the stress-or, together break down muscle, change the chemistry of the mind.
Now I'm not saying as a bi-polar that I haven't done some really strange things based on a mind which had no "off" switch, but what happened 8 years ago, was way beyond my "normal" strangeness.
I was in constant stress, my heart, my mind, and followed by these symptoms, my hair fell out, my hands shook, my strength wavered, and nobody thought to ask how much I was sleeping.
I've been thru one of the most horrendous stress events of my life, when the local hospital, a health trap, mishandled a case of Bradycardia with the use of Narcan, an opiate antagonizer. Not only that but the issue of "informed consent" but the misunderstanding about lack of sleep.
XANAX
The name of this drug sounds like a new car, but unfortunately elicits judgment from healthcare staff, as it is an abused drug apparently.
The drug is in the class of drugs called "benzodiazapines" which are anti-seizure medications generally speaking, but are also used for anti-anxiety, and for manics who just won't shut up.
This group of drugs has the benefit of calming, and it helps in sleep.
I started taking Ativan, which is close the the characteristics of Xanax, but not all of the "benzo's" are created equal, meaning they do not all act the same way.
After six years on Ativan, up to a dosage of 8 milligrams, (yes, that's a lot of honey for the bee) and Melatonin, Valerian root, other herbal sleep aids, and hell even milk, to try and get that sleep I so need, I knew it was no longer working.
I stopped and started various remedies trying to get back to the eight hours or even seven, and it has not changed, except to the extent that it harms me.
One, two, three...and I'm up and awake again, each night. Often, I find food in my bed, so I am getting up during the night in a state that is almost like sleep walking, but more like sleep eating. Crumbs and ants, walk over me, in my "slots" of sleep, then I'm back up.
Netflix has been a good addition to my night owl activities, as it keeps me from getting started on a project and finding myself at noon the next day still writing. I stream TV programs I have heard were good, but since I despise the lassitude of laying in front of a box of numbers deciding how my next few hours are being spent, so Directv, go to hell, I don't watch regular television.
But during these stressful nights, I took my Ativan for years, in fact, as I said, I was at a 8 mg. dosage and was still not sleeping for more than a couple hours at a time. I could have taken more, but I began to realize there was a change in the effectiveness of Ativan for me.
Previous uses of Benzo's
When my mother died, I took Ativan to help the stress. I took 1/2 mg. of the stuff, and I was out in a moment, even a little sleepy when I would arise.
Can you even imagine the shape a person would be in to take 8 mg. of Ativan? I can't even imagine, but now, with a few doctors who care, I am beginning to learn some new things about what is really stealing my health.
I took 10 mg., not voluntarily, at a hospital which had staff making a mistake and insisting that I take, kid you not, 20 mg. of Ativan.
I told these nurses that they needed to check their nursing manuals, and come back with the 5 mg. I was titering down to. It took me 1 1/2 years to go from 8 mg. to 5 mg. and these nurses, who usually will always give less of these types of drugs, came on like gangbusters, trying to force me to take this dose.
Instead, I was given the option of splitting my 20 mg. into 10. So, knowing I had been on Ativan for five years, and it wasn't working properly now that I was reducing the dose, I took the 10 mg. and chewed them, accepting no water.
One half hour later, one of the nurses returned, and I was wide awake and angry that I had to take this mistake, and I say it was because I was bi-polar that I was forced into taking more drugs than necessary. I was also not asleep.
Most people who have no chemical problems, would not have awoken from this 10 mg. error, but I did. Why is the question, and it is the why the doctors avoided the anomaly of why I can take this much of the medication.
They called me the "light weight"
I was never able to take drugs, I was what was called a "lightweight." And I'm not talking about my weight, but my ability to handle intoxicants.
Why hasn't this been addressed? Several reasons such as the moniker "drug seeker" and "user" which don't help to find out what has happened. These are lazy judgments designed to get a doctor an extra hour of flirting with his staff while his wife/husband cooks dinner at home.
I would NEVER recommend that anyone else with insomnia, concomitant with bi-polar and thyroid the master hormone, problems, that they use benzodiazipines for insomnia.
I also would NEVER tell anyone to try Ambien either as it made me angry and a feeling of being drunk.
But it's a serious problem that needs to be addressed. Part two coming up...
I took a drive to the Rural Health Clinic over the weekend to see and maybe feel if I could, the beginning of what has become a mudslide of health problems that started in my life.
Yes, I'm bi-polar, but does that mean I am more prone to other disorders, mental or physical, or really what I'm saying was it the chicken or the egg?
Did my bi-polar have anything to do with my thyroid problem for instance? The stress of being bi-polar could certainly link it to other problems, and here's the biggest problem I suddenly realized that I face: Insomnia.
For the last 8 years I have had differing levels of insomnia, meaning losing restful sleep so important to a BP, but also to any human being.
I could probably say that this symptom of itself has been a serious problem in my ability to regain my health. I've had autoimmune symptoms, and no diagnosis, but the problem I see is the fact that the symptom of lack of sleep, can exacerbate the rest of the problems.
Now I believe I may understand what happened with Michael Jackson
I've never had a sleep problem, I liked to sleep, and I made sure I had my 9 hours a night. It was clockwork back then, I didn't have to work to sleep, I just went to work and came home and fell asleep.
It seems easy enough, just like breathing, it was on it's own clock, the timer in my head, the Melatonin, all smooth sailing for 40 years.
And like a dark force had come over me, I couldn't sleep, my body went into stress.
Doctors immediately bring up "sleep aids" such as Ambien and I was given this drug at a time the insomnia was far beyond control of a drug.
The sleep pattern became so disturbed that I was in mania all the time, and I after a while I could not control it. In fact, my bird is living in a $800 dollar cage that was "free" to the crazy lady who nitpicked the imperfections of the cage, that the company decided to discontinue our purchase, and the cage was without cost.
But it's never without cost
As I was saying about Michael Jackson, he obviously suffered from insomnia to even consider using the particular drug, I don't have the name of it in front of me, but it's delivered via licensed anesthesiologist, to get to sleep.
His health, mental health was at stake, and the doctors even with all his money did not treat him properly.
I don't know anything about his potential for abuse of children, but I do know, that insomnia can cause a myriad of symptoms, including lack of self control.
When Jackson died, it was unnecessarily so in my opinion. He was sick, he couldn't sleep, his body had no recovery system to steady his mind and keep a balance in his body.
I could not handle the loss of sleep. I have a sleep journal my friend, not doctor, suggested I mark down the pattern which was occurring. Looking back in time, I see that I had a serious problem, and nothing on my medical records says "insomnia."
Why is insomnia not noted for it's debilitating side effects?
When I arrived here in this rural area above Bakersfield, I was sick, very sick, and probably slept one minute a night. But I was never sure, as I would writhe in bed, trying to get comfortable all night long. Suddenly I think the candle blew out for only a moment, then with a start, I would re-awake to the unreal, the one minute of sleep.
I assume my brain had to shut down or it simply began to shut down on it's own, to save my life.
Stress a killer and Insomnia the stress-or, together break down muscle, change the chemistry of the mind.
Now I'm not saying as a bi-polar that I haven't done some really strange things based on a mind which had no "off" switch, but what happened 8 years ago, was way beyond my "normal" strangeness.
I was in constant stress, my heart, my mind, and followed by these symptoms, my hair fell out, my hands shook, my strength wavered, and nobody thought to ask how much I was sleeping.
I've been thru one of the most horrendous stress events of my life, when the local hospital, a health trap, mishandled a case of Bradycardia with the use of Narcan, an opiate antagonizer. Not only that but the issue of "informed consent" but the misunderstanding about lack of sleep.
XANAX
The name of this drug sounds like a new car, but unfortunately elicits judgment from healthcare staff, as it is an abused drug apparently.
The drug is in the class of drugs called "benzodiazapines" which are anti-seizure medications generally speaking, but are also used for anti-anxiety, and for manics who just won't shut up.
This group of drugs has the benefit of calming, and it helps in sleep.
I started taking Ativan, which is close the the characteristics of Xanax, but not all of the "benzo's" are created equal, meaning they do not all act the same way.
After six years on Ativan, up to a dosage of 8 milligrams, (yes, that's a lot of honey for the bee) and Melatonin, Valerian root, other herbal sleep aids, and hell even milk, to try and get that sleep I so need, I knew it was no longer working.
I stopped and started various remedies trying to get back to the eight hours or even seven, and it has not changed, except to the extent that it harms me.
One, two, three...and I'm up and awake again, each night. Often, I find food in my bed, so I am getting up during the night in a state that is almost like sleep walking, but more like sleep eating. Crumbs and ants, walk over me, in my "slots" of sleep, then I'm back up.
Netflix has been a good addition to my night owl activities, as it keeps me from getting started on a project and finding myself at noon the next day still writing. I stream TV programs I have heard were good, but since I despise the lassitude of laying in front of a box of numbers deciding how my next few hours are being spent, so Directv, go to hell, I don't watch regular television.
But during these stressful nights, I took my Ativan for years, in fact, as I said, I was at a 8 mg. dosage and was still not sleeping for more than a couple hours at a time. I could have taken more, but I began to realize there was a change in the effectiveness of Ativan for me.
Previous uses of Benzo's
When my mother died, I took Ativan to help the stress. I took 1/2 mg. of the stuff, and I was out in a moment, even a little sleepy when I would arise.
Can you even imagine the shape a person would be in to take 8 mg. of Ativan? I can't even imagine, but now, with a few doctors who care, I am beginning to learn some new things about what is really stealing my health.
I took 10 mg., not voluntarily, at a hospital which had staff making a mistake and insisting that I take, kid you not, 20 mg. of Ativan.
I told these nurses that they needed to check their nursing manuals, and come back with the 5 mg. I was titering down to. It took me 1 1/2 years to go from 8 mg. to 5 mg. and these nurses, who usually will always give less of these types of drugs, came on like gangbusters, trying to force me to take this dose.
Instead, I was given the option of splitting my 20 mg. into 10. So, knowing I had been on Ativan for five years, and it wasn't working properly now that I was reducing the dose, I took the 10 mg. and chewed them, accepting no water.
One half hour later, one of the nurses returned, and I was wide awake and angry that I had to take this mistake, and I say it was because I was bi-polar that I was forced into taking more drugs than necessary. I was also not asleep.
Most people who have no chemical problems, would not have awoken from this 10 mg. error, but I did. Why is the question, and it is the why the doctors avoided the anomaly of why I can take this much of the medication.
They called me the "light weight"
I was never able to take drugs, I was what was called a "lightweight." And I'm not talking about my weight, but my ability to handle intoxicants.
Why hasn't this been addressed? Several reasons such as the moniker "drug seeker" and "user" which don't help to find out what has happened. These are lazy judgments designed to get a doctor an extra hour of flirting with his staff while his wife/husband cooks dinner at home.
I would NEVER recommend that anyone else with insomnia, concomitant with bi-polar and thyroid the master hormone, problems, that they use benzodiazipines for insomnia.
I also would NEVER tell anyone to try Ambien either as it made me angry and a feeling of being drunk.
But it's a serious problem that needs to be addressed. Part two coming up...
Monday, August 1, 2011
My road's been less traveled
I think I've expressed my distaste for Facebook, but let me do it again anyway. It has replaced daytime television and has become some sort of race for thousands of friends who would never be there if you begged them.I think it's causing a new mental illness of sorts.
I'm not saying it doesn't have some advantages such as finding old chums, chatting with people who have no phones (or something like that) but it seems to be a place to say the oddest things. And some scary things such as what I read today.
There have been suicide posts on "Face it you're bored" and I'm even going to push it to cries for help. I looked thru many posts, and so many people are in need out there. They need to be heard.
My nephew is suffering from depression and he gets his support via Facebook. It is strange, but I guess I'm glad he has some way to express his out of control feelings and get a response.
Sometimes it's easier to write than to talk to someone about deep, dark feelings...I most certainly can relate to that. And I did write on "my wall" today. Then I commented on Facebook.
It's odd, but the internet can be a place of healing and as much as I don't have a "chicken" or a "diamond" for a game, I see there are benefits to this type of communication.
Our President Obama is using the internet in a way no other President or politician has in history. I've been saving all of his correspondences as well as Jerry Brown, California AG Kamala Harris, and our local representatives. This is history like we have never seen it in this context, and I am very interested in following the tactical as well as the other unique changes being brought about on the internet.
I see more disabled people working in the future on computers set up to serve their particular challenges. I could use some new additions to my computer which could possibly make a difference in my ability to be more productive, possibly even able to work more.
Hopefully, in a few years I will not have to read, I will be read to. Yes, it's already available, but for a price. Touch screen would cut workman's comp in half. We already should be ordering our computers with voice commands, which again would stop the repetitive injuries eating away at our disability monies.
I need to work to live in the sense I need air to breathe, water to drink, food to eat. It's part of who I am and I don't want to give in to my maladies.
The internet is changing the world, we can reach out to each other. As much as I face off with Facebook, I do see some communication that is necessary.
The next generations of computers and programs should be considerate of the elderly who also could benefit from communicating with family. How many lonely people, lost their spouse, live alone, and have nothing but cable television, would benefit from seeing their grand kids via the computer, videos and so forth.
So, if I were marketing, I would make simplistic version for seniors who are afraid or have no experience with computers, which could offer safety, security, and support.
Kids with cell phones can call for help. Kids know how to operate these devices more so than their parents and parental controls are a joke.
It's a new age, with a new way of thinking, and how about those moments, fellow bi-polars, when you're about to unload on someone, you have a list of support people on your computer to keep you out of trouble. I know there are support groups starting on Facebook and it's a remarkable thing to have lived half your life afraid to say "hi, I'm bi-polar" and get a stare, and then find people who have experienced the very same prejudice and isolation, is a truly miraculous transition.
Okay, my nephew is important, and I'm going to go write to him on Facebook right now.
I'm not saying it doesn't have some advantages such as finding old chums, chatting with people who have no phones (or something like that) but it seems to be a place to say the oddest things. And some scary things such as what I read today.
There have been suicide posts on "Face it you're bored" and I'm even going to push it to cries for help. I looked thru many posts, and so many people are in need out there. They need to be heard.
My nephew is suffering from depression and he gets his support via Facebook. It is strange, but I guess I'm glad he has some way to express his out of control feelings and get a response.
Sometimes it's easier to write than to talk to someone about deep, dark feelings...I most certainly can relate to that. And I did write on "my wall" today. Then I commented on Facebook.
It's odd, but the internet can be a place of healing and as much as I don't have a "chicken" or a "diamond" for a game, I see there are benefits to this type of communication.
Our President Obama is using the internet in a way no other President or politician has in history. I've been saving all of his correspondences as well as Jerry Brown, California AG Kamala Harris, and our local representatives. This is history like we have never seen it in this context, and I am very interested in following the tactical as well as the other unique changes being brought about on the internet.
I see more disabled people working in the future on computers set up to serve their particular challenges. I could use some new additions to my computer which could possibly make a difference in my ability to be more productive, possibly even able to work more.
Hopefully, in a few years I will not have to read, I will be read to. Yes, it's already available, but for a price. Touch screen would cut workman's comp in half. We already should be ordering our computers with voice commands, which again would stop the repetitive injuries eating away at our disability monies.
I need to work to live in the sense I need air to breathe, water to drink, food to eat. It's part of who I am and I don't want to give in to my maladies.
The internet is changing the world, we can reach out to each other. As much as I face off with Facebook, I do see some communication that is necessary.
The next generations of computers and programs should be considerate of the elderly who also could benefit from communicating with family. How many lonely people, lost their spouse, live alone, and have nothing but cable television, would benefit from seeing their grand kids via the computer, videos and so forth.
So, if I were marketing, I would make simplistic version for seniors who are afraid or have no experience with computers, which could offer safety, security, and support.
Kids with cell phones can call for help. Kids know how to operate these devices more so than their parents and parental controls are a joke.
It's a new age, with a new way of thinking, and how about those moments, fellow bi-polars, when you're about to unload on someone, you have a list of support people on your computer to keep you out of trouble. I know there are support groups starting on Facebook and it's a remarkable thing to have lived half your life afraid to say "hi, I'm bi-polar" and get a stare, and then find people who have experienced the very same prejudice and isolation, is a truly miraculous transition.
Okay, my nephew is important, and I'm going to go write to him on Facebook right now.
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