I lost my blog! Damn, it was so good,too. Very detailed information about last week's session. My brain remembers very little of it. Of course.
Hmmm, what did I want to say? This is a question that runs through my desperate brain very often.
Here's what did stick in my brain: PT explained to us that a new study indicates that Fibro patients' muscles need four to five times as long to relax as your average person (whoever that is.) She was using this study to illustrate why it is important to rest in between exercise sets because a muscle not at rest cannot fully engage, making the exercise far less effective. This study also explains a great deal about the omnipresent muscle pain and, often, the lack of muscle definition, that are some of the highlights of Fibromyalgia. She also spoke at length about the importance of doing exercises for only a few reps, maybe 5 or 6, because after that, muscles cannot hold their "grip" as well and you are not getting the benefit of the exercise, and may begin to overcompensate with other muscles that you could end up injuring. So much about which to think, but it does make me feel a bit better about the general state of disrepair into which my body has fallen.
I have tried, for decades, to stay in shape. Not to be a swimsuit model or to run a marathon, but just not to be stared at and pointed at as either too skinny or too "plump" (my five year old's word.) I have very close friends who are in absolutely incredible shape, even after having numerous babies and it is a constant self esteem battle to say, over and over, I can't go to your trainer, I can't hike three hours into Runyon with you, I can't wake up at 5 am and do Barry's Boot Camp with you (but I am so damn impressed that you guys do all that.)
I started doing yoga in the early 90s. When I started, I was very inflexible in some ways and over flexible in others. Teachers found this odd but told me I would become more flexible as I learned more. It is now 16 years later. Still exact same amount of inflexibility and flexibility.
One thing this Fibro Boot Camp has given me is more tools by which to express myself in these matters. Now I know I could hike Runyon again....if I take a 10 minute break every 20 minutes. Now let's see if I can muster the discipline to do that!
Tuesday, July 14, 2009
Sunday, July 12, 2009
WTF
Last week in Bootcamp, in OT, we filled out time management evaluations and I had to narrow in on the four major things on which I need to work: making the most efficient work of my energy, making time for myself, committing myself to too many things and completing tasks even when I am tired. I have a terrible time management problem. I am constantly hounded by the "should" monster while the "guilt" fairy is sitting on my shoulder and I cannot stop moving even when it cause me great pain. I can never say no.
We were given a handout with some quotes and one hit home for me: from Stephen Covey: We are controlled by the clock and our compass. "Our compass represents vision, values, principles, mission, conscience and direction what we feel is important and how we lead our lives." Now, I am not one to quote people like Stephen Covey, but I did really find that this is what I am missing these days. I used to only be controlled by my compass, I like to believe, but certainly the clock takes up most of my life now.
Another important quote was from a fellow fibro sufferer: "Forget your pride." This is an extremely difficult one for me. Just writing this blog and putting all this out into the ether is humiliating on several levels, but I realize it is also cathartic for me and helpful for my loved ones at the same time. I started out life as the geeky, awkward, poor kid who had nothing but brains to recommend her and then I developed (literally) into a cute blond chick with big boobs who had to fight to remind people that she was intelligent. These days, my eidetic memory has more holes than a slice of Swiss cheese and my medications, age and my inability to exercise more than 20 minutes at a time has left my "cute girl" body in the dumpster. I can't remember what I read the night before and I have to wear "sensible" shoes and a "fanny pack" -god I hate that word. I am trying my hardest to come to terms with all these things, but, man, those sensible shoes are KILLING me.
Another important lesson: I cannot control most things and I have to stop trying. I am wasting energy trying to will other drivers into driving well; I am wasting energy being angry at my assistant for not knowing where to put the return address on an envelope; I am wasting energy being angry at myself for the person I have become. I need to use my energy in a productive manner-mainly, being there for my son and my husband, relaxing, meditating, painting, reading, you get the idea.
We were given a handout with some quotes and one hit home for me: from Stephen Covey: We are controlled by the clock and our compass. "Our compass represents vision, values, principles, mission, conscience and direction what we feel is important and how we lead our lives." Now, I am not one to quote people like Stephen Covey, but I did really find that this is what I am missing these days. I used to only be controlled by my compass, I like to believe, but certainly the clock takes up most of my life now.
Another important quote was from a fellow fibro sufferer: "Forget your pride." This is an extremely difficult one for me. Just writing this blog and putting all this out into the ether is humiliating on several levels, but I realize it is also cathartic for me and helpful for my loved ones at the same time. I started out life as the geeky, awkward, poor kid who had nothing but brains to recommend her and then I developed (literally) into a cute blond chick with big boobs who had to fight to remind people that she was intelligent. These days, my eidetic memory has more holes than a slice of Swiss cheese and my medications, age and my inability to exercise more than 20 minutes at a time has left my "cute girl" body in the dumpster. I can't remember what I read the night before and I have to wear "sensible" shoes and a "fanny pack" -god I hate that word. I am trying my hardest to come to terms with all these things, but, man, those sensible shoes are KILLING me.
Another important lesson: I cannot control most things and I have to stop trying. I am wasting energy trying to will other drivers into driving well; I am wasting energy being angry at my assistant for not knowing where to put the return address on an envelope; I am wasting energy being angry at myself for the person I have become. I need to use my energy in a productive manner-mainly, being there for my son and my husband, relaxing, meditating, painting, reading, you get the idea.
Tuesday, July 7, 2009
I'm good enough, I'm smart enough, and, WTF, people like me.
So I did breathe my way into forty, wearing ridiculous but gorgeous Christian Louboutin heels that lasted about an hour on my feet. My husband threw me an amazing party with wonderful friends, great drinks and incredible food (thank you, Campanile.) Friends from high school, college, law school and my life in Los Angeles all came and we danced and laughed and I almost felt young-ish.
I felt like I had an important learning moment that weekend. We had been talking in Psych about how negative thoughts truly can affect your physical well being (raising cortisol, adrenaline, etc.) and how that is especially true in Fibro patients since we generally live in fight or flight mode anyway, with raised levels of all those hormones already. I realized that I have also often let negative thoughts run my life and a large reason for that had to do with my fear of not being thought of as intelligent. That doesn't automatically make sense does it? Well, in my twisted German, Goth mind, it did. I had come to believe that true intelligence is always distrusting and snarky and negative. Positive thinking, to me, was perky and fake and insincere and mindless. It seemed sad, actually, like the great Senator Al Franken's Stuart Smalley from SNL. I have also come to realize I have quite a problem with black and white thinking, so I cannot navigate the gray waters of life very well and am, therefore, trying to be more open to some of the ideas I have hated in the past, i.e., "positive thinking."
Positive thinking, I am starting to realize, does not require one to be skipping along mindlessly while giggling to oneself, not ready for the anvil to fall out of a clear blue sky. One can simply try to leave open the possibility that not all is evil and dark in the world. This has become both easier and more difficult since becoming a parent. But I have decided that, rather than anticipate the worst in every situation and look at everything through a lens clouded by pain and anger, I would give myself permission to just take things at face value.
I believe I have looked at the negative side of life because I have always wanted to be prepared for the worst. I like to play chess with catastrophe. I like to look eight moves ahead and see all the bad that is up ahead, so I believe I can prepare myself for it. Obviously, this is truly impossible. Saying it out loud or writing it down makes it seem even more ludicrous, but, in my twisted brain, it has always made sense. Besides making me a generally dark person, it seems it has also filled my brain and body with bad chemicals and hormones that may add to my pain.
So, my new plan is to take a situation and not just jump straight to the dark side. I will take a deep breath; I will look at both sides of the issue; I will tend to the "positive" side of the issue, because what is the harm in taking that side for once? Perhaps I will be unprepared for the worst because I haven't thought it all through to its horrible conclusion. But here's the truth, even though I was always preparing for the worst, when the bad things did happen, I was never really prepared. I wasn't steeled against the pain, physically or mentally or emotionally. In fact, it all seemed even worse because I had been expecting something bad to happen and, when it did, it just fueled my fury that the world was a bad place.
So now, I will take the sunny side of the street for a while and see what happens. It can't be worse than the stormy side.
I felt like I had an important learning moment that weekend. We had been talking in Psych about how negative thoughts truly can affect your physical well being (raising cortisol, adrenaline, etc.) and how that is especially true in Fibro patients since we generally live in fight or flight mode anyway, with raised levels of all those hormones already. I realized that I have also often let negative thoughts run my life and a large reason for that had to do with my fear of not being thought of as intelligent. That doesn't automatically make sense does it? Well, in my twisted German, Goth mind, it did. I had come to believe that true intelligence is always distrusting and snarky and negative. Positive thinking, to me, was perky and fake and insincere and mindless. It seemed sad, actually, like the great Senator Al Franken's Stuart Smalley from SNL. I have also come to realize I have quite a problem with black and white thinking, so I cannot navigate the gray waters of life very well and am, therefore, trying to be more open to some of the ideas I have hated in the past, i.e., "positive thinking."
Positive thinking, I am starting to realize, does not require one to be skipping along mindlessly while giggling to oneself, not ready for the anvil to fall out of a clear blue sky. One can simply try to leave open the possibility that not all is evil and dark in the world. This has become both easier and more difficult since becoming a parent. But I have decided that, rather than anticipate the worst in every situation and look at everything through a lens clouded by pain and anger, I would give myself permission to just take things at face value.
I believe I have looked at the negative side of life because I have always wanted to be prepared for the worst. I like to play chess with catastrophe. I like to look eight moves ahead and see all the bad that is up ahead, so I believe I can prepare myself for it. Obviously, this is truly impossible. Saying it out loud or writing it down makes it seem even more ludicrous, but, in my twisted brain, it has always made sense. Besides making me a generally dark person, it seems it has also filled my brain and body with bad chemicals and hormones that may add to my pain.
So, my new plan is to take a situation and not just jump straight to the dark side. I will take a deep breath; I will look at both sides of the issue; I will tend to the "positive" side of the issue, because what is the harm in taking that side for once? Perhaps I will be unprepared for the worst because I haven't thought it all through to its horrible conclusion. But here's the truth, even though I was always preparing for the worst, when the bad things did happen, I was never really prepared. I wasn't steeled against the pain, physically or mentally or emotionally. In fact, it all seemed even worse because I had been expecting something bad to happen and, when it did, it just fueled my fury that the world was a bad place.
So now, I will take the sunny side of the street for a while and see what happens. It can't be worse than the stormy side.
Monday, June 22, 2009
Breathing towards forty
It is so strange to take deep breaths. I can tell you I always thought I was breathing. Now, I realize I have spent much of my life holding my breath. I have no idea why, but I have. Walking around, taking deep belly breaths...what a strange sensation.
So I am going to be Forty next week. I freely admit that I am in complete denial about it. I also freely admit that one of the reasons it is hitting me so hard is having this illness. I have felt like this illness has stolen my youth to some degree. I do feel like it has kept me from becoming the person I thought I would be. However, if I examine my life, obviously, I am so lucky to have what I do have-I was able to complete my law degree, work as a lawyer, travel the world, married an amazingly supportive and loving man, have an exceptionally bright (if I do say so myself-completely unbiased) child, have a beautiful house and extremely supportive and understanding friends. No, I did not become TombRaider, no, I did not scale Mount Everest, no, I didn't become a world wide respected artist. C'est la vie. The one thing I am having trouble accepting is that I did not become Sheryl Crow.
Let me explain. A few years ago, I was lucky to be the "plus one" to Sheryl Crow's 40th birthday party. It was an incredible party-she had a whole concert where she played songs with amazing guests and then she had a beautiful party at a restaurant. This was shortly after she had started surfing and was in the most perfect shape and simply gorgeous. She was dressed simply and yet looked stunning.
I still had a few years before I turned forty, so I resolved I would figure out a way to also be a picture of perfect health and joie de vivre.
Instead, as I creep up towards that day, I am wearing a cervical collar to sleep and am currently only able to work out 20 minutes a day. I have to use a fanny pack and wear proper, sensible shoes. I keep buying those ridiculous high heels, though. I just think they are so hysterically gorgeous. Yes, I am sure the people who created them are men who have no idea what it feels like to walk on twenty five inch heels with 100 lbs per square inch on each toe. I still can't resist them.
Maybe if I just keep breathing deeply these last few days of 39, I'll turn into Sheryl Crow and only wear heels from now on.
So I am going to be Forty next week. I freely admit that I am in complete denial about it. I also freely admit that one of the reasons it is hitting me so hard is having this illness. I have felt like this illness has stolen my youth to some degree. I do feel like it has kept me from becoming the person I thought I would be. However, if I examine my life, obviously, I am so lucky to have what I do have-I was able to complete my law degree, work as a lawyer, travel the world, married an amazingly supportive and loving man, have an exceptionally bright (if I do say so myself-completely unbiased) child, have a beautiful house and extremely supportive and understanding friends. No, I did not become TombRaider, no, I did not scale Mount Everest, no, I didn't become a world wide respected artist. C'est la vie. The one thing I am having trouble accepting is that I did not become Sheryl Crow.
Let me explain. A few years ago, I was lucky to be the "plus one" to Sheryl Crow's 40th birthday party. It was an incredible party-she had a whole concert where she played songs with amazing guests and then she had a beautiful party at a restaurant. This was shortly after she had started surfing and was in the most perfect shape and simply gorgeous. She was dressed simply and yet looked stunning.
I still had a few years before I turned forty, so I resolved I would figure out a way to also be a picture of perfect health and joie de vivre.
Instead, as I creep up towards that day, I am wearing a cervical collar to sleep and am currently only able to work out 20 minutes a day. I have to use a fanny pack and wear proper, sensible shoes. I keep buying those ridiculous high heels, though. I just think they are so hysterically gorgeous. Yes, I am sure the people who created them are men who have no idea what it feels like to walk on twenty five inch heels with 100 lbs per square inch on each toe. I still can't resist them.
Maybe if I just keep breathing deeply these last few days of 39, I'll turn into Sheryl Crow and only wear heels from now on.
Thursday, June 18, 2009
Tired of the WTF titles...
I approached the second week of Boot Camp with a bit of trepidation. I had had such highs and lows last week and I still couldn't fully move my neck. And, frankly, I WAS worried about my hypoid muscles.
I arrived wearing velvet sweatpants, a black shirt with leopard print on it, my Twilight sweatshirt and a fanny pack. Yes, a fanny pack. Although I prefer to think of it as a hip belt. I had to wear it because of my broken neck. All in all, I was impressive. I was shocked Tyra Banks didn't chase me down and crown my America's Next Top Model right then and there.
I arrived early and, as soon as PT saw me, she asked about my neck and she put my neck in traction! It was an odd sensation, but felt really good. I then did 15 minutes on the treadmill. This is nothing for your average person, but for me, it's huge.
During the PT session, I wasn't sure how to approach PT about my neck and my hypoid muscles. My opportunity came when we were each to show our favorite exercises we were doing at home. One of my fellow campers was demonstrating a neck twist that my PT did not want me to do and, since I wasn't showing the proper enthusiasm for it, PT came over to (I thought) force my neck into position. I jumped back and she looked at me, quizzically. I then had to explain the whole hypoid muscles scandal. She nodded, but said she felt I had a "joint mobilization" problem, not a muscle problem. What? What does that mean? She said we'd work together at the end of the class. We didn't. I still don't know how and who should mobilize what where??? For the rest of the time we did Pelvic Clock rotations, which were odd but fun, and theraband exercises. She stressed that we needed to do these every day, along with our (approved) stretches and our walks and our aerobic exercises.
Now, could someone figure out how to fit all this extra stuff into my day? Oh, right, we have to take that time away from something else, from SOME one else. Fun. Not my strong suit. PT wanted us to make sure we explain to our support systems how necessary all this was. So here I am telling you...and telling me, I think.
In OT, we discussed sleep. Sleep, that elusive nymph. Fibro patients tend not to get into Delta sleep, the sleep where the body and mind can truly heal themselves. We learned that this can lead to severe fatigue and decreased activity endurance. Um, yep, did realize that. Fibro patients often also suffer from restless leg syndrome (ME), which also makes it difficult to sleep. The constant "fight-or-flight" response that is present in Fibro patients makes it impossible to allow the para-sympathetic system to kick in and perform its function-which is to regulate our internal states-digestion, sleep, managing pain and emotions and healing the body.
Here are some rules we learned regarding best possible sleep hygiene, as they call it. (I have never liked that term. It sounds like one should sterilize oneself before getting into bed.)
1. A routine is extremely important. This regulates your body clock. How many times has someone told you to go to bed and get up at the same time, even on the weekends? It sounds so good and reasonable, but, come on-how can one do that? Especially with children.
2. Exercise each day. Obviously good no matter how one sleeps.
3. Get outside into the sunlight as soon as possible after waking. Stay there for at least 15 minutes, and this should be done between 7-9 am. This is another good way to set your body's biorhythm . This is something I hadn't heard before; I am happy to get new information that makes sense to me.
4. Bedtime snack of complex carbs helps brain to produce serotonin, which is the chemical that actual gets you to fall asleep. I like anything that tells me to eat MORE, so I am happy with that one.
5. No naps! Thank god someone finally says that because I HATE naps. I hate the feeling of waking up groggy after a nap and realizing it is not morning and probably close to dinner, which still hasn't been made (or ordered, in our case). Ugh. And someone is always trying to tell me to nap...not anymore, sucker.
6. No screen time an hour before bed. That is a tough one, all around....
7. Make the bedroom dark, clear of clutter, filled with soothing white noise.
Anyone who has their own child knows the best way to get a kid ready for bed is with a bedtime routine: a bath, some stories, written or told, a little alone time. This is also necessary for adults. We just don't do it. We rush, rush, rush, and then fall into bed, filled with stress and adrenaline.
Ok, Ok, so I get the sleep hygiene thing; however, I don't see how any of that will help the actual chemical processing problem. We were so busy talking about what we would change in our sleep routines that we never got around to that question. Tomorrow.
In the Psych section, we went over how learning to be aware of our thoughts, emotions and behaviors can help achieve good mental health, which will help us live with a greater quality of life. It is far too easy to let negative thoughts take hold and take over what could and should be pleasant parts of our day. Limitations, chronic pain and depression are all parts of the fibro life. Paying close attention to how negative thoughts impact those areas will allow us, eventually, to let those negative thoughts go on their (un)merry way and leave us to deal with the realities of our life as they truly are. Pacing is a key skill, and this is something that will actually just need to be drilled into my head. Psych told us what we already know: a typical fibro person "yo-yos" through activity cycles of manic overdoing only to fall into complete inactivity due to exhaustion and pain from the mania. Obviously, this then would trigger negative feelings (guilt, angry, frustration, depression.) Fibro patients are in a constant state of arousal and not in the good way. We perceive lights, sounds, smells, etc. as an attack so our heart rates and blood pressure are up, our muscles tense-ready to run or fight, our breath is shallow, our extremities are cold and our senses are oversensitive, which then leads to a catch 22.
Here are some of her tips for allowing that parasympathetic system kick back in:
1. Adding at least one pleasurable activity into each day. (what, cleaning up eviscerated mice from my office bathroom doesn't count? Thanks to my dear cat for the gift, though...)
2. Resting. What does that mean? I still don't really know.
3. Pacing. Hand me that drill for my head, please...
4. Breathing-we did more breathing exercises, including a progressive muscle relaxation which actually did work. Interesting fact-women, especially, have a hard time getting the correct amount of oxygen in their blood. Why? Because we learn at a young age to hold in our stomachs. This limits our lungs capacity for expansion and, therefore, we end up taking only shallow breaths. Less than optimal oxygenation in our blood can lead to many functions in our bodies not working as intended.
and 5. Be conscious of your thoughts. Don't be a slave to your emotions. I Must Learn This One.
Most of all, it is important to practice all these things in order to try to retrain the parasympathetic system.
I left feeling positive. Yes, there were some parts of this program that was the same old pig in a new dress, but there were also new farm animals and they seemed to all be going to prom...ok, I have completely lost that metaphor. Basically, I do like having all this info (old and new) in one place and I know that I have the capability of figuring out which ones are actually useful. It's still difficult dealing with the "hypoid v. joint mobilization" issues-one doc/Pt/etc against the other. I want to arm myself with the most current knowledge so I can help make those decisions myself.
As I was leaving, I was given (not from the Bootcamp) info about a new drug that has helped fibro patients tremendously. It is called Avinza and I planned to ask my doctor about it. However, when I got home and read the brochure, I realized it is time-released morphine. Yes, I am in pain, but I am terrified of these hard core drugs. But, damn, those brochure pictures sure make it look benign and those people look so happy....well, they are on morphine...
I arrived wearing velvet sweatpants, a black shirt with leopard print on it, my Twilight sweatshirt and a fanny pack. Yes, a fanny pack. Although I prefer to think of it as a hip belt. I had to wear it because of my broken neck. All in all, I was impressive. I was shocked Tyra Banks didn't chase me down and crown my America's Next Top Model right then and there.
I arrived early and, as soon as PT saw me, she asked about my neck and she put my neck in traction! It was an odd sensation, but felt really good. I then did 15 minutes on the treadmill. This is nothing for your average person, but for me, it's huge.
During the PT session, I wasn't sure how to approach PT about my neck and my hypoid muscles. My opportunity came when we were each to show our favorite exercises we were doing at home. One of my fellow campers was demonstrating a neck twist that my PT did not want me to do and, since I wasn't showing the proper enthusiasm for it, PT came over to (I thought) force my neck into position. I jumped back and she looked at me, quizzically. I then had to explain the whole hypoid muscles scandal. She nodded, but said she felt I had a "joint mobilization" problem, not a muscle problem. What? What does that mean? She said we'd work together at the end of the class. We didn't. I still don't know how and who should mobilize what where??? For the rest of the time we did Pelvic Clock rotations, which were odd but fun, and theraband exercises. She stressed that we needed to do these every day, along with our (approved) stretches and our walks and our aerobic exercises.
Now, could someone figure out how to fit all this extra stuff into my day? Oh, right, we have to take that time away from something else, from SOME one else. Fun. Not my strong suit. PT wanted us to make sure we explain to our support systems how necessary all this was. So here I am telling you...and telling me, I think.
In OT, we discussed sleep. Sleep, that elusive nymph. Fibro patients tend not to get into Delta sleep, the sleep where the body and mind can truly heal themselves. We learned that this can lead to severe fatigue and decreased activity endurance. Um, yep, did realize that. Fibro patients often also suffer from restless leg syndrome (ME), which also makes it difficult to sleep. The constant "fight-or-flight" response that is present in Fibro patients makes it impossible to allow the para-sympathetic system to kick in and perform its function-which is to regulate our internal states-digestion, sleep, managing pain and emotions and healing the body.
Here are some rules we learned regarding best possible sleep hygiene, as they call it. (I have never liked that term. It sounds like one should sterilize oneself before getting into bed.)
1. A routine is extremely important. This regulates your body clock. How many times has someone told you to go to bed and get up at the same time, even on the weekends? It sounds so good and reasonable, but, come on-how can one do that? Especially with children.
2. Exercise each day. Obviously good no matter how one sleeps.
3. Get outside into the sunlight as soon as possible after waking. Stay there for at least 15 minutes, and this should be done between 7-9 am. This is another good way to set your body's biorhythm . This is something I hadn't heard before; I am happy to get new information that makes sense to me.
4. Bedtime snack of complex carbs helps brain to produce serotonin, which is the chemical that actual gets you to fall asleep. I like anything that tells me to eat MORE, so I am happy with that one.
5. No naps! Thank god someone finally says that because I HATE naps. I hate the feeling of waking up groggy after a nap and realizing it is not morning and probably close to dinner, which still hasn't been made (or ordered, in our case). Ugh. And someone is always trying to tell me to nap...not anymore, sucker.
6. No screen time an hour before bed. That is a tough one, all around....
7. Make the bedroom dark, clear of clutter, filled with soothing white noise.
Anyone who has their own child knows the best way to get a kid ready for bed is with a bedtime routine: a bath, some stories, written or told, a little alone time. This is also necessary for adults. We just don't do it. We rush, rush, rush, and then fall into bed, filled with stress and adrenaline.
Ok, Ok, so I get the sleep hygiene thing; however, I don't see how any of that will help the actual chemical processing problem. We were so busy talking about what we would change in our sleep routines that we never got around to that question. Tomorrow.
In the Psych section, we went over how learning to be aware of our thoughts, emotions and behaviors can help achieve good mental health, which will help us live with a greater quality of life. It is far too easy to let negative thoughts take hold and take over what could and should be pleasant parts of our day. Limitations, chronic pain and depression are all parts of the fibro life. Paying close attention to how negative thoughts impact those areas will allow us, eventually, to let those negative thoughts go on their (un)merry way and leave us to deal with the realities of our life as they truly are. Pacing is a key skill, and this is something that will actually just need to be drilled into my head. Psych told us what we already know: a typical fibro person "yo-yos" through activity cycles of manic overdoing only to fall into complete inactivity due to exhaustion and pain from the mania. Obviously, this then would trigger negative feelings (guilt, angry, frustration, depression.) Fibro patients are in a constant state of arousal and not in the good way. We perceive lights, sounds, smells, etc. as an attack so our heart rates and blood pressure are up, our muscles tense-ready to run or fight, our breath is shallow, our extremities are cold and our senses are oversensitive, which then leads to a catch 22.
Here are some of her tips for allowing that parasympathetic system kick back in:
1. Adding at least one pleasurable activity into each day. (what, cleaning up eviscerated mice from my office bathroom doesn't count? Thanks to my dear cat for the gift, though...)
2. Resting. What does that mean? I still don't really know.
3. Pacing. Hand me that drill for my head, please...
4. Breathing-we did more breathing exercises, including a progressive muscle relaxation which actually did work. Interesting fact-women, especially, have a hard time getting the correct amount of oxygen in their blood. Why? Because we learn at a young age to hold in our stomachs. This limits our lungs capacity for expansion and, therefore, we end up taking only shallow breaths. Less than optimal oxygenation in our blood can lead to many functions in our bodies not working as intended.
and 5. Be conscious of your thoughts. Don't be a slave to your emotions. I Must Learn This One.
Most of all, it is important to practice all these things in order to try to retrain the parasympathetic system.
I left feeling positive. Yes, there were some parts of this program that was the same old pig in a new dress, but there were also new farm animals and they seemed to all be going to prom...ok, I have completely lost that metaphor. Basically, I do like having all this info (old and new) in one place and I know that I have the capability of figuring out which ones are actually useful. It's still difficult dealing with the "hypoid v. joint mobilization" issues-one doc/Pt/etc against the other. I want to arm myself with the most current knowledge so I can help make those decisions myself.
As I was leaving, I was given (not from the Bootcamp) info about a new drug that has helped fibro patients tremendously. It is called Avinza and I planned to ask my doctor about it. However, when I got home and read the brochure, I realized it is time-released morphine. Yes, I am in pain, but I am terrified of these hard core drugs. But, damn, those brochure pictures sure make it look benign and those people look so happy....well, they are on morphine...
Monday, June 15, 2009
WTF did I do to myself?
So, Girl had her first melt down (since beginning program-Girl, OBVIOUSLY, has had many meltdowns). Now Girl was heading into the weekend with a bronchial patient for a husband and a five year old who is always on "GO!" Hard to "rest and regulate" as Girl was instructed.
Girl tried, she really did! Stretches first thing Saturday morning. Ate healthy breakfast. Girl tried not to let horrid low pressure system affect her, but it always makes her muscles ache.
Girl took son to miniature golf five birthday party and she knew she was in trouble when he, whose body is like a constant furnace, announced, "I'm cold, mommy." Fever! Girl and son tore out of there before Hazmat was called in.
So....Girl retreated to that well known place-the Mother Bubble. You can barely see the sky, the bubble is so thick. Poor bronchial husband tapped on the Bubble a few times to ask for some water, but could not get through.
Girl does admit that regulation needs to be learned.
Girl got a lovely surprise Sunday morning. Girl had the hubris to yawn and stretch at the same time. Girl's neck would have none of that. SNAP! CRACKLE! POP! and Girl was down. On the floor. Yelling. Laughing (Girl sometimes reacts inappropriately to pain by laughing-i.e., beginning labor contractions). Girl's husband hauled her up onto Zero Gravity Chair and there she stayed for half the day. Heat, Motrin, Oxy, nothing helped.
Meanwhile, sick son fell asleep on floor next her chair. Thankfully, bronchial husband was able to fetch a blanket for poor child and dear, kind friends fetched food for us.
Girl was most disappointed that her first weekend with new program was a BUST.
Girl had her own Physical Therapist work on her neck on Monday. This woman can work miracles, and helped a great deal, but also filled Girl with worry.
Girl: Let me show you my new exercises.
Miracle PT: Ok, some of these are ok for you, but they are very conventional and some might not be safe for your hypoid muscles.
Girl did not even know she HAD hypoid muscles and now cannot believe she risked injuring them.
Girl felt depressed that new program may just be same old pig dressed in new fancy dress. Girl decided not to do stretches again until she sees Program PT.
Girl is peeved.
Girl tried, she really did! Stretches first thing Saturday morning. Ate healthy breakfast. Girl tried not to let horrid low pressure system affect her, but it always makes her muscles ache.
Girl took son to miniature golf five birthday party and she knew she was in trouble when he, whose body is like a constant furnace, announced, "I'm cold, mommy." Fever! Girl and son tore out of there before Hazmat was called in.
So....Girl retreated to that well known place-the Mother Bubble. You can barely see the sky, the bubble is so thick. Poor bronchial husband tapped on the Bubble a few times to ask for some water, but could not get through.
Girl does admit that regulation needs to be learned.
Girl got a lovely surprise Sunday morning. Girl had the hubris to yawn and stretch at the same time. Girl's neck would have none of that. SNAP! CRACKLE! POP! and Girl was down. On the floor. Yelling. Laughing (Girl sometimes reacts inappropriately to pain by laughing-i.e., beginning labor contractions). Girl's husband hauled her up onto Zero Gravity Chair and there she stayed for half the day. Heat, Motrin, Oxy, nothing helped.
Meanwhile, sick son fell asleep on floor next her chair. Thankfully, bronchial husband was able to fetch a blanket for poor child and dear, kind friends fetched food for us.
Girl was most disappointed that her first weekend with new program was a BUST.
Girl had her own Physical Therapist work on her neck on Monday. This woman can work miracles, and helped a great deal, but also filled Girl with worry.
Girl: Let me show you my new exercises.
Miracle PT: Ok, some of these are ok for you, but they are very conventional and some might not be safe for your hypoid muscles.
Girl did not even know she HAD hypoid muscles and now cannot believe she risked injuring them.
Girl felt depressed that new program may just be same old pig dressed in new fancy dress. Girl decided not to do stretches again until she sees Program PT.
Girl is peeved.
Sunday, June 14, 2009
WTF Did we do on the 2nd Day?
In between the first and second day of the program, I was on my own. I did my stretches, I ate my gluten free, dairy free, soy free food, I wrote down my blocks of time and when I felt the most pain, etc. I was ready for day two.
The second day of the program each week is dedicated to individual meetings with the therapists. I was very interested to see how these meetings would enhance the new information I had gathered on the first day. I only had half an hour with each person and felt like I wanted to tell them everything that was wrong with me and everything that I had already done in each of these areas over the years and have them lead me into the light.
Not too much to ask in 30 minutes, is it?
I met first with Physical Therapist (PT) and, again, I liked her. She was no nonsense but kind, at the same time. We went through some Feldenkrais stretches and she, again, explained to me the importance of not overdoing. This is just one lesson I cannot seem to keep in my head. I think I feel so angry at my limited physical capacities and stamina, that I just keep punishing myself by pushing myself and then I cannot do anything. I was dismayed when she told me she already thought I was doing too much by doing some Pilates, some water workouts, some walking, some elipitical bike each week. I want to do more, not less!!
I then met with Occupational Therapist (OT) and this is going to be where I have my hardest time. I truly KNOW what I should do in this area: I know I should sit ergonomically at my desk, I know I can get my five year old to wash his own berries in the morning, I know I should get up half an hour earlier so I don't have to rush. It's the putting into action that I cannot figure out. I felt like OT and I were at a bit of a loss. At least in this initial meeting, I did not feel she had much to share with me and I kept trying to be enthusiastic so she wouldn't think I was being a know-it-all that just said, "Yes, but...." to every suggestion and throw me out of the program. I was a bit crestfallen after that meeting.
My last appointment was with Brain Psychologist (BP) and it is hard also to do any sort of analysis in 30 minutes, especially when you've never talked with this person in any depth before. We did talk about my difficulties with resting and sitting still and NOT doing. This is clearly a deep rooted issue and I am thankful I go to my own therapist where I could really delve in this problem.
So, all in all, I leave my second day of the program a bit less enthusiastic. Thirty minutes is just not adequate time, I believe, in which to create any change.
As the day continued, my mood darkened considerably. I arrived home and the usual chaos was everywhere. My business (http://www.littlestork.com) had a few hiccups that needed attention; I had picked up my son from his last day of Junior Kindergarten and he was so excited and full of energy and he needed every ounce of my attention; my poor husband had just come back from the doctor, diagnosed with bronchitis.
As I surveyed the chaos, I started to feel truly hopeless. I felt like I could have all the best intentions in the world for this program and yet the reality of life (and my own issues) were going to keep me from putting the new ideas into action. It seemed so exciting to sit in these sessions and think about new ways to plan ahead for pain and sensory overload situations. But, being in my complete mess of a house, with my husband (worst patient in the world, btw) sick as a dog and my amazing wonderful son wanting to say to me every single word that is ever in his brain (and you can't not engage with him-he will not be ignored or blown off) and my business requiring just the usual upkeep that any other small business requires, I felt so frustrated and angry and that nothing would ever change for me. It would be one thing if I were a single chick and my only responsibility was myself. I think then that I could really attack these changes. Of course, I didn't back then, either. But I would like to think that, had I had the benefit of a program such as this one, I would have truly incorporated these changes. The thought of putting actual thought into my daily actions in a real way seems impossible. How can I think about how straight my spine is or doing daily meditations (even for five minutes) or take this slowly or plan for going places when they are less crowded or even remembering where my meds are in my chaotic life?
As the day continued, I was snapping and sniping more and more. My husband sat me down and actually put into words what I had been feeling. That smart bastard knows me too damn well, bronchitis or not. He said that we would figure it all out. We would be able to incorporate the changes. Because it is vital to our lives that these changes were made. I was truly so happy to hear him say these things, but it also made me realize that one of the biggest obstacles here was me.
I know that is a pretty standard "psych 101" thing to say. And I know that it's true. I need to say no. I need to plan. I just need to do it, dammit. Do it, dammit. Do it, do it, do it.
The second day of the program each week is dedicated to individual meetings with the therapists. I was very interested to see how these meetings would enhance the new information I had gathered on the first day. I only had half an hour with each person and felt like I wanted to tell them everything that was wrong with me and everything that I had already done in each of these areas over the years and have them lead me into the light.
Not too much to ask in 30 minutes, is it?
I met first with Physical Therapist (PT) and, again, I liked her. She was no nonsense but kind, at the same time. We went through some Feldenkrais stretches and she, again, explained to me the importance of not overdoing. This is just one lesson I cannot seem to keep in my head. I think I feel so angry at my limited physical capacities and stamina, that I just keep punishing myself by pushing myself and then I cannot do anything. I was dismayed when she told me she already thought I was doing too much by doing some Pilates, some water workouts, some walking, some elipitical bike each week. I want to do more, not less!!
I then met with Occupational Therapist (OT) and this is going to be where I have my hardest time. I truly KNOW what I should do in this area: I know I should sit ergonomically at my desk, I know I can get my five year old to wash his own berries in the morning, I know I should get up half an hour earlier so I don't have to rush. It's the putting into action that I cannot figure out. I felt like OT and I were at a bit of a loss. At least in this initial meeting, I did not feel she had much to share with me and I kept trying to be enthusiastic so she wouldn't think I was being a know-it-all that just said, "Yes, but...." to every suggestion and throw me out of the program. I was a bit crestfallen after that meeting.
My last appointment was with Brain Psychologist (BP) and it is hard also to do any sort of analysis in 30 minutes, especially when you've never talked with this person in any depth before. We did talk about my difficulties with resting and sitting still and NOT doing. This is clearly a deep rooted issue and I am thankful I go to my own therapist where I could really delve in this problem.
So, all in all, I leave my second day of the program a bit less enthusiastic. Thirty minutes is just not adequate time, I believe, in which to create any change.
As the day continued, my mood darkened considerably. I arrived home and the usual chaos was everywhere. My business (http://www.littlestork.com) had a few hiccups that needed attention; I had picked up my son from his last day of Junior Kindergarten and he was so excited and full of energy and he needed every ounce of my attention; my poor husband had just come back from the doctor, diagnosed with bronchitis.
As I surveyed the chaos, I started to feel truly hopeless. I felt like I could have all the best intentions in the world for this program and yet the reality of life (and my own issues) were going to keep me from putting the new ideas into action. It seemed so exciting to sit in these sessions and think about new ways to plan ahead for pain and sensory overload situations. But, being in my complete mess of a house, with my husband (worst patient in the world, btw) sick as a dog and my amazing wonderful son wanting to say to me every single word that is ever in his brain (and you can't not engage with him-he will not be ignored or blown off) and my business requiring just the usual upkeep that any other small business requires, I felt so frustrated and angry and that nothing would ever change for me. It would be one thing if I were a single chick and my only responsibility was myself. I think then that I could really attack these changes. Of course, I didn't back then, either. But I would like to think that, had I had the benefit of a program such as this one, I would have truly incorporated these changes. The thought of putting actual thought into my daily actions in a real way seems impossible. How can I think about how straight my spine is or doing daily meditations (even for five minutes) or take this slowly or plan for going places when they are less crowded or even remembering where my meds are in my chaotic life?
As the day continued, I was snapping and sniping more and more. My husband sat me down and actually put into words what I had been feeling. That smart bastard knows me too damn well, bronchitis or not. He said that we would figure it all out. We would be able to incorporate the changes. Because it is vital to our lives that these changes were made. I was truly so happy to hear him say these things, but it also made me realize that one of the biggest obstacles here was me.
I know that is a pretty standard "psych 101" thing to say. And I know that it's true. I need to say no. I need to plan. I just need to do it, dammit. Do it, dammit. Do it, do it, do it.
Thursday, June 11, 2009
WTF happened the first day?
I had to, of course, choose my outfit very carefully for this first day. It's like the first day of school. You don't want to be uncool nor do you want to look like you are trying to hard. THEN, I remembered that we were supposed to wear comfortable clothes. Um, yes, that would make sense, but that makes it even harder. Well, I settled on some lovely velour sweatpants and some very sensible shoes and a big comfy sweatshirt.
I walked into the waiting room and was handed a big white binder. I turned to find another woman waiting, with a white binder, wearing MY SAME OUTFIT! Ok, colors were slightly different, but what a faux pas already. What would Perez Hilton think? It did make me think I would have at least one friend there.
This waiting room, as are all waiting rooms, was inexplicably freezing. While people experience Fibromyalgia differently, we all do not suffer cold gladly. Cold tenses up muscles; we all already experience painful muscle tension. This often seems to escape those that treat Fibro. That and that strong fragrances, especially unnatural ones, cause tremendous headaches and yet, so often, as is the case in my ACUPUNCTURIST'S office, of all places, they have those horrible so-called "air fresheners" plugged in everywhere. ARGH.
It turns out there will only be three of us in this six week program. I had truly expected twenty people, somehow looking like Denis Leary's AA meetings in "Rescue Me." Nope, it was me, my doppelganger and another woman. All clutching our bright shiny new binders as if they were the Holy Grail. Of course, we were all hoping that they would, indeed, turn out to be just that.
We were led into a room inside a larger gym by a woman I liked immediately. She is from Israel and, as she put it, "is tough on the outside, but a softie on the inside." We introduced ourselves and it was then that I realized that my doppelganger was half my age. Half my age. I need new clothes.
Our lovely instructor led us through some stretches and I almost tuned out. I have had no less than 30 PTs show me the same stretches over the years. They never help. I felt defeated already. But, there I was, already underestimating Mima. She actually walked me through how those stretches, done at certain times and with certain accessories, would make it easier to do every day tasks. Here was an important difference. She was pointing out what I needed to do to make it work for me. It was soon obvious that an important word for this boot camp was "ACTIVE" not passive. Mima explained that, due to pain and frustration at experiencing even more pain when being active, fibro patients begin to suffer from lack of muscle tone, which then adds to pain. Keeping any sort of muscle tone is incredibly difficult for Fibro patients, even with working out. Adrenaline is pumped out at inappropriate times, and with nowhere to go, tears muscles. Mima, god bless her, is going to teach us how to be active WITHIN REASON (Fibro patients often have a hard time regulating-anyone who knows me should be shocked by that)and make it work for us. Mima gives us homework. I LOVE HOMEWORK! Binders and homework-I almost skipped down the hall. I need to get a new school skirt and patent leather mary janes and I am good to go.
We then had a break and I, having been gluten, dairy and soy free now for a few weeks, (and also trying to lose 45 pounds in 2 weeks for my impending doom, I mean, 40th birthday) was concerned about where to eat lunch in 45 minutes before our next session. The young girl and I decided to bravee the deli in the building. I am not a deli in the building kind of girl. I have food phobias that have food phobias. That could be its own blog. BUT, I was not going to run to starbucks to get a pretend milk shake disguised as a coffee drink, so i braved their version of Lentil soup, and for a special treat, allowed myself raw almonds. I was pleased(-ish) with the food and proud of my will power (for once.) Young Girl (She'll be YG from now on) and I struck up a conversation and it truly is like having a weight lifted off one's shoulders to talk with someone who has the same experiences as you and understands the frustrations of the every day.
What truly struck me while I was talking to YG is that I WAS YG when this saga started. Now I am Old Girl and that is one of the worst parts of this entire disease for me. I really did, in some illogical part of my brain, think I would somehow get back all the days of my youth that had been afflicted by this disease that made me feel old at 20.
Our second session was entitled "Occupational Therapy." In these sessions, we would learn coping skills for quality of life, for work, for family, etc. We talked about all the things that add to our fatigue, including overdoing (again, with the regulating), sensory overload (we can't handle bright lights, loud music, things like clowns, etc,), emotional stress, poor nutrition, lack of sleep (Fibro patients generally don't get Delta sleep where the body can heal itself), and decreased cognition.
This last point was truly interesting to me. I had experienced my once super sharp brain and eidetic memory disintegrate -this was one of the reasons I had decided to stop working as a lawyer- but it had not truly occurred to me that my lack of "smarts" was making me tired. As the sweet and kind Judy explained to me, having to make your
brain work harder to get through the so-called Fibro Fog, generally created by the fact that your brain is so preoccupied by the chronic pain, makes you even more tired, creating more Fibro fog. COME ON! That hardly seems fair, now does it? Judy sent us off with more HOMEWORK, hurray!!
Our last session was "Psychology." I had assumed that this would be like a group support therapy session, since it does seem very valuable to be able to share similar experiences. The psychiatrist leading our session explained these sessions would actually be about teaching us the psychology of Fibro and how our minds can help us build coping skills. She walked us through the Autonomic Nervous System is wonky is Fibro patients and we can't go to the rest phase that follows a fight or flight response. People see a threat and go in that state. Once the threat has passed, a rest and rebuilding phase kicks in. Not so for us lucky fibro patients. Not only do we not go into the rest phase, our idea of a threat is not always quite what any other person might see as a threat. A lion enters your house-yes we would generally all agree that is a threat. For a fibro patient, someone dropping a glass in another room or a light being too bright can also kick in that fight or flight response. So should you see me beating up a lamp, please be understanding. Obviously, being at such an elevated state of alert at all times burns one out. It literally burns out your adrenals. Being in this state of arousal leaves one unable to heal, rest and manage stress. Aces.
She gave us some great suggestions for beginning coping. Breathing, meditation. Now, obviously, these are ideas that I have heard and even tried before. The difference here is that she understands that a typical Fibro patient might hear-you need to meditate and that patient then feels the need to build a meditation room and buy every meditation tape and perhaps even a buddhist monk (again, that regulation problem). She suggested going to http://marc.ucla.edu/body.cfm?id=22&oTopID=22 and downloading a few of the FIVE minute meditations. Baby steps she says-things that can realistically be incorporated into an already difficult day. She also gave us homework.
I think I am in heaven.
I walked into the waiting room and was handed a big white binder. I turned to find another woman waiting, with a white binder, wearing MY SAME OUTFIT! Ok, colors were slightly different, but what a faux pas already. What would Perez Hilton think? It did make me think I would have at least one friend there.
This waiting room, as are all waiting rooms, was inexplicably freezing. While people experience Fibromyalgia differently, we all do not suffer cold gladly. Cold tenses up muscles; we all already experience painful muscle tension. This often seems to escape those that treat Fibro. That and that strong fragrances, especially unnatural ones, cause tremendous headaches and yet, so often, as is the case in my ACUPUNCTURIST'S office, of all places, they have those horrible so-called "air fresheners" plugged in everywhere. ARGH.
It turns out there will only be three of us in this six week program. I had truly expected twenty people, somehow looking like Denis Leary's AA meetings in "Rescue Me." Nope, it was me, my doppelganger and another woman. All clutching our bright shiny new binders as if they were the Holy Grail. Of course, we were all hoping that they would, indeed, turn out to be just that.
We were led into a room inside a larger gym by a woman I liked immediately. She is from Israel and, as she put it, "is tough on the outside, but a softie on the inside." We introduced ourselves and it was then that I realized that my doppelganger was half my age. Half my age. I need new clothes.
Our lovely instructor led us through some stretches and I almost tuned out. I have had no less than 30 PTs show me the same stretches over the years. They never help. I felt defeated already. But, there I was, already underestimating Mima. She actually walked me through how those stretches, done at certain times and with certain accessories, would make it easier to do every day tasks. Here was an important difference. She was pointing out what I needed to do to make it work for me. It was soon obvious that an important word for this boot camp was "ACTIVE" not passive. Mima explained that, due to pain and frustration at experiencing even more pain when being active, fibro patients begin to suffer from lack of muscle tone, which then adds to pain. Keeping any sort of muscle tone is incredibly difficult for Fibro patients, even with working out. Adrenaline is pumped out at inappropriate times, and with nowhere to go, tears muscles. Mima, god bless her, is going to teach us how to be active WITHIN REASON (Fibro patients often have a hard time regulating-anyone who knows me should be shocked by that)and make it work for us. Mima gives us homework. I LOVE HOMEWORK! Binders and homework-I almost skipped down the hall. I need to get a new school skirt and patent leather mary janes and I am good to go.
We then had a break and I, having been gluten, dairy and soy free now for a few weeks, (and also trying to lose 45 pounds in 2 weeks for my impending doom, I mean, 40th birthday) was concerned about where to eat lunch in 45 minutes before our next session. The young girl and I decided to bravee the deli in the building. I am not a deli in the building kind of girl. I have food phobias that have food phobias. That could be its own blog. BUT, I was not going to run to starbucks to get a pretend milk shake disguised as a coffee drink, so i braved their version of Lentil soup, and for a special treat, allowed myself raw almonds. I was pleased(-ish) with the food and proud of my will power (for once.) Young Girl (She'll be YG from now on) and I struck up a conversation and it truly is like having a weight lifted off one's shoulders to talk with someone who has the same experiences as you and understands the frustrations of the every day.
What truly struck me while I was talking to YG is that I WAS YG when this saga started. Now I am Old Girl and that is one of the worst parts of this entire disease for me. I really did, in some illogical part of my brain, think I would somehow get back all the days of my youth that had been afflicted by this disease that made me feel old at 20.
Our second session was entitled "Occupational Therapy." In these sessions, we would learn coping skills for quality of life, for work, for family, etc. We talked about all the things that add to our fatigue, including overdoing (again, with the regulating), sensory overload (we can't handle bright lights, loud music, things like clowns, etc,), emotional stress, poor nutrition, lack of sleep (Fibro patients generally don't get Delta sleep where the body can heal itself), and decreased cognition.
This last point was truly interesting to me. I had experienced my once super sharp brain and eidetic memory disintegrate -this was one of the reasons I had decided to stop working as a lawyer- but it had not truly occurred to me that my lack of "smarts" was making me tired. As the sweet and kind Judy explained to me, having to make your
brain work harder to get through the so-called Fibro Fog, generally created by the fact that your brain is so preoccupied by the chronic pain, makes you even more tired, creating more Fibro fog. COME ON! That hardly seems fair, now does it? Judy sent us off with more HOMEWORK, hurray!!
Our last session was "Psychology." I had assumed that this would be like a group support therapy session, since it does seem very valuable to be able to share similar experiences. The psychiatrist leading our session explained these sessions would actually be about teaching us the psychology of Fibro and how our minds can help us build coping skills. She walked us through the Autonomic Nervous System is wonky is Fibro patients and we can't go to the rest phase that follows a fight or flight response. People see a threat and go in that state. Once the threat has passed, a rest and rebuilding phase kicks in. Not so for us lucky fibro patients. Not only do we not go into the rest phase, our idea of a threat is not always quite what any other person might see as a threat. A lion enters your house-yes we would generally all agree that is a threat. For a fibro patient, someone dropping a glass in another room or a light being too bright can also kick in that fight or flight response. So should you see me beating up a lamp, please be understanding. Obviously, being at such an elevated state of alert at all times burns one out. It literally burns out your adrenals. Being in this state of arousal leaves one unable to heal, rest and manage stress. Aces.
She gave us some great suggestions for beginning coping. Breathing, meditation. Now, obviously, these are ideas that I have heard and even tried before. The difference here is that she understands that a typical Fibro patient might hear-you need to meditate and that patient then feels the need to build a meditation room and buy every meditation tape and perhaps even a buddhist monk (again, that regulation problem). She suggested going to http://marc.ucla.edu/body.cfm?id=22&oTopID=22 and downloading a few of the FIVE minute meditations. Baby steps she says-things that can realistically be incorporated into an already difficult day. She also gave us homework.
I think I am in heaven.
Wednesday, June 10, 2009
WTF Happened-Part 2
Ok, where was I? Oh, yes the heavens had parted and Girl had seen the Fibromyalgia light. It truly was an amazing day. To finally put a name on the amorphous pains and the increasing fatigue that had plagued the Girl was unbelievable.
Girl scours Internet (mind you, it was 1999) and prints out page and page of stories of people with symptoms like hers.
Girl's joy at naming her pain slowly turns to depression as this Internet research came to one pointed conclusion: there was no cure for her newly named disease. In fact, many doctors still did not believe it was truly a disease.
Girl continues on. She goes to miracle chiro three days a week. She also tries several rheumatoid arthritis doctors who "specialize" in fibromyalgia treatment. These treatments seemed to entail more and more medicine, especially anti-depressants.
Girl takes medicine. Girl is a zombie on the floor. Girl refuses medicine. Doctors shrug their shoulders.
Girl has, in the meantime, moved in with an amazingly supportive and loving man. Let this fact not be underrated. This fact may have been the main reason Girl managed to live through the constant pain and fatigue.
Not as supportive-Girl's work. Let it suffice to say, after having nine migraines in 7 days, and receiving little to no support from the place she had once loved so dearly, Girl marched into her boss's boss's office and quit.
Girl's husband, who is only her boyfriend at the time, applauds decision.
Girl decides her health can be her full time job...for now.
That was nine years ago.
Girl had incredibly difficult time NOT being a lawyer anymore. Girl often began (and still does) sentences with "I used to be a lawyer..."
Girl has been doing yoga for years. Friend says to try Pilates.
Girl meets PT at Pilates who tells her to go to endocrinologist who is "performing miracles." Endo runs tests that indicate Girl has human growth hormone of 60 year old woman.
Girl agrees to shoot Human Growth Hormone into herself every day. Girl secretly wonders if HGH will make her into a 20 year again. HGH does not.
Girl does feel better-ish. Girl works out 30 minutes and shoots up with HGH every day. Girl also takes wellbutrin during the day and ativan to sleep and goes to Feldenkrais twice a week.
Just as Girl has found a program that works, alarm, alarm! Girl's biological clock starts going off. So Girl must go off...all her meds...this takes six months and then..boom..pregnant!
Girl has difficult pregnancy-let's brush over that whole thing-and is blessed with an amazing son.
After recovering from a C section and breast feeding for 8 months, Girl tries to go back on meds. Where Wellbutrin made her body and brain happy prior to pregnancy, it now makes her craaaazy. She tries old med after new med again and again. Girl also has a wonderful bouncing baby boy now. Girl is terrified she will drop beautiful boy so Girl gets amazing nanny.
Girl is very lucky.
One lovely May morning, Girl wakes up with invisible spear piercing her left temple. Girl feels as if she is, while being pierced by said spear, also wearing a large hat with a grey feather that is just out of her peripheral vision. Girl's pain is at that really really sad face on the pain scale.
Girl runs from eye doctor to tumor doctor to stroke doctor, from MRI to CAT scan. Medicine after medicine is prescribed, including some that make her crawl into a closet for fear of her life. She is given the "Superbowl Migraine Medicine" which makes her nose stuffy, but little else. She is given a fentanyl patch which makes her pass out. Doctor who prescribed it is surprised to hear that patches had recently been recalled due to inexact dosages.
Girl does not seem to have a tumor nor did she had a stroke. All good news, but what is left? Doctors think it is a migraine. Girl has had migraines for years. Not a migraine. Doctors also discover Girl has hole in heart-a genetic defect that many migraine sufferers have. Girl is assessed and it is decided heart surgery to close hole is too risky, so doctors suggest waiting until AFTER her first stroke to fix said hole. After all, who knows when that will happen? It'll be so much fun to wait to see...
Girl is given neurontin and lexapro and adds the less sharp spear in her head to her bag of tricks that she carries with her.
After a year on those meds, Girl weans off to see what is underneath. Is the spear gone? Is she better? Does she need different meds? Can she please just be off meds?
Girl is not better. Girl wants to try more new things, so follows advice of friend and drives hours to see yet another new doctor who swears and promises this clinic has the answer. The answer, it seems, entails many, many hormones and medicines that the clinic makes itself. Health insurance company is unimpressed and refuses to cover. Girl is desperate so continues to drive hours and pay hundreds for hormones.
Girl slowly turns into Jack Nicholson from the Shining. Girl believes world will come to an end; Girl believes there is no hope; Girl begins drinking with invisible bartender from the 20s...
Girl's father insists she see one of his students at a major LA hospital. Girl does not want to see yet another doctor. Girl finally goes when she thinks of chasing Olive Oyl through a maze in upstate New York.
New doctor is a revelation! Not only is she up to date on fibromyalgia, she also believes in combining Eastern and Western Medicine!! Girl starts on a treatment on acupuncture and meds, including back on the neurontin and lexapro.
One day, husband reads in paper about amazing Fibromyalgia boot camp at different major LA hospital.
Girl wants in. It take several months, but it happens. Girl cannot believe that there is a place where people not only believe in Fibro, but have ideas how to manage it and want to share those ideas.
So here we are...and here we go....
Girl scours Internet (mind you, it was 1999) and prints out page and page of stories of people with symptoms like hers.
Girl's joy at naming her pain slowly turns to depression as this Internet research came to one pointed conclusion: there was no cure for her newly named disease. In fact, many doctors still did not believe it was truly a disease.
Girl continues on. She goes to miracle chiro three days a week. She also tries several rheumatoid arthritis doctors who "specialize" in fibromyalgia treatment. These treatments seemed to entail more and more medicine, especially anti-depressants.
Girl takes medicine. Girl is a zombie on the floor. Girl refuses medicine. Doctors shrug their shoulders.
Girl has, in the meantime, moved in with an amazingly supportive and loving man. Let this fact not be underrated. This fact may have been the main reason Girl managed to live through the constant pain and fatigue.
Not as supportive-Girl's work. Let it suffice to say, after having nine migraines in 7 days, and receiving little to no support from the place she had once loved so dearly, Girl marched into her boss's boss's office and quit.
Girl's husband, who is only her boyfriend at the time, applauds decision.
Girl decides her health can be her full time job...for now.
That was nine years ago.
Girl had incredibly difficult time NOT being a lawyer anymore. Girl often began (and still does) sentences with "I used to be a lawyer..."
Girl has been doing yoga for years. Friend says to try Pilates.
Girl meets PT at Pilates who tells her to go to endocrinologist who is "performing miracles." Endo runs tests that indicate Girl has human growth hormone of 60 year old woman.
Girl agrees to shoot Human Growth Hormone into herself every day. Girl secretly wonders if HGH will make her into a 20 year again. HGH does not.
Girl does feel better-ish. Girl works out 30 minutes and shoots up with HGH every day. Girl also takes wellbutrin during the day and ativan to sleep and goes to Feldenkrais twice a week.
Just as Girl has found a program that works, alarm, alarm! Girl's biological clock starts going off. So Girl must go off...all her meds...this takes six months and then..boom..pregnant!
Girl has difficult pregnancy-let's brush over that whole thing-and is blessed with an amazing son.
After recovering from a C section and breast feeding for 8 months, Girl tries to go back on meds. Where Wellbutrin made her body and brain happy prior to pregnancy, it now makes her craaaazy. She tries old med after new med again and again. Girl also has a wonderful bouncing baby boy now. Girl is terrified she will drop beautiful boy so Girl gets amazing nanny.
Girl is very lucky.
One lovely May morning, Girl wakes up with invisible spear piercing her left temple. Girl feels as if she is, while being pierced by said spear, also wearing a large hat with a grey feather that is just out of her peripheral vision. Girl's pain is at that really really sad face on the pain scale.
Girl runs from eye doctor to tumor doctor to stroke doctor, from MRI to CAT scan. Medicine after medicine is prescribed, including some that make her crawl into a closet for fear of her life. She is given the "Superbowl Migraine Medicine" which makes her nose stuffy, but little else. She is given a fentanyl patch which makes her pass out. Doctor who prescribed it is surprised to hear that patches had recently been recalled due to inexact dosages.
Girl does not seem to have a tumor nor did she had a stroke. All good news, but what is left? Doctors think it is a migraine. Girl has had migraines for years. Not a migraine. Doctors also discover Girl has hole in heart-a genetic defect that many migraine sufferers have. Girl is assessed and it is decided heart surgery to close hole is too risky, so doctors suggest waiting until AFTER her first stroke to fix said hole. After all, who knows when that will happen? It'll be so much fun to wait to see...
Girl is given neurontin and lexapro and adds the less sharp spear in her head to her bag of tricks that she carries with her.
After a year on those meds, Girl weans off to see what is underneath. Is the spear gone? Is she better? Does she need different meds? Can she please just be off meds?
Girl is not better. Girl wants to try more new things, so follows advice of friend and drives hours to see yet another new doctor who swears and promises this clinic has the answer. The answer, it seems, entails many, many hormones and medicines that the clinic makes itself. Health insurance company is unimpressed and refuses to cover. Girl is desperate so continues to drive hours and pay hundreds for hormones.
Girl slowly turns into Jack Nicholson from the Shining. Girl believes world will come to an end; Girl believes there is no hope; Girl begins drinking with invisible bartender from the 20s...
Girl's father insists she see one of his students at a major LA hospital. Girl does not want to see yet another doctor. Girl finally goes when she thinks of chasing Olive Oyl through a maze in upstate New York.
New doctor is a revelation! Not only is she up to date on fibromyalgia, she also believes in combining Eastern and Western Medicine!! Girl starts on a treatment on acupuncture and meds, including back on the neurontin and lexapro.
One day, husband reads in paper about amazing Fibromyalgia boot camp at different major LA hospital.
Girl wants in. It take several months, but it happens. Girl cannot believe that there is a place where people not only believe in Fibro, but have ideas how to manage it and want to share those ideas.
So here we are...and here we go....
Saturday, June 6, 2009
WTF Happened-Part I?
How did I get here? Let's see if that can be summed up:
Girl with double major in English and German Lit, minor in Art History, who works for an estates lawyer and paints in her spare time, develops insane pain in her hands in 1990. The pain moves into her shoulder and shoulder blade.
Tendinitis doctor: You have carpel tunnel.
Carpel Tunnel doctor: You have tendinitis.
Girl must take winter quarter finals orally. Most fun oral exam: "Logic", and by most fun, I mean, one that makes one want to vomit.
Doctors conclude: Girl is simply a hysteric, unable to deal with the stress and pain everyone feels.
Girl decides: law school would be least stressful place to go.
Girl truly loves law school and makes it through somehow-swimming and lots of drinking may have done the trick at that point. Girl also tries chiropractors and acupuncture. Girl finds several acupuncture needles in her skull after third visit to scary dark Chinese medicine store, where they also make her drink dark, gloopy medicine. Girl decides to drink gin and tonics instead.
Girl moves to West Coast to be full time entertainment lawyer and full time girlfriend to drummer.
Girl studies for the Bar. Girl writes for five, six hours a day. Three days before said Bar, Girl's hand refuses to close around the pencil any longer.
Girl must cancel the Bar. The BAR. That test that was to determine the rest of her life. That test for which she had studied for eight hours or more the entire summer. That test that all her other classmates were taking.
Girl gets to, instead of taking exam to be lawyer, do physical therapy and wear a super attractive plastic cast on her right hand. A cast that does nothing to keep drunk idiots from bumping into her at shows.
Girl tries to get a minimum wage job at mall. Girl is denied. Girl tries to tutor. No one needs a tutor who cannot write. Girl's life is not going where she had imagined it.
Girl, finally, gets to type the bar and passes! Hallelujah!
Girl finds job at entertainment law firm which is 2.5 hours of driving away from boyfriend's apartment. Girl drives stick shift truck with no radio or air conditioner 2.5 hours each way. Girl is not happy. People who know Girl and must be around Girl are not happy.
Girl's new job is interesting and challenging, but Girl cannot understand what is going on with her pain levels. Her hand is working sometimes, but often times, her whole body is in such intense pain that she cannot focus on anything. No use going to another doctor, right? Girl is just a baby. Girl just can't handle what everyone else can handle and her hand issue? Well, no one knows, but it doesn't seem serious. Well, unless you call not being able to use it serious...
Girl continues like this for several years. She moves to new, even more interesting job. Girl does not want to be a whiner (but she knows she is, sometimes.) Girl just wants to do what she wants to do. She tries different nutritional diets, different PTs, different massages, different chiros. It's all random. She struggles to get by and tries to use voice activated software to substitute for her inability to write. It's the late 90s. Voice activated software was like Pac-man. It does not help, except in creating interesting automatic writing poetry.
One day, Girl's hand and back are causing her to be in agony. Friend suggests her chiropractor. Girl, in desperation, runs to one more chiro. This wonderful and kind man says the magic words to her: "You have fibromyalgia," and the sky opens up and the angels begin to sing.
What did the angels sing? Tune in tomorrow and find out...
Girl with double major in English and German Lit, minor in Art History, who works for an estates lawyer and paints in her spare time, develops insane pain in her hands in 1990. The pain moves into her shoulder and shoulder blade.
Tendinitis doctor: You have carpel tunnel.
Carpel Tunnel doctor: You have tendinitis.
Girl must take winter quarter finals orally. Most fun oral exam: "Logic", and by most fun, I mean, one that makes one want to vomit.
Doctors conclude: Girl is simply a hysteric, unable to deal with the stress and pain everyone feels.
Girl decides: law school would be least stressful place to go.
Girl truly loves law school and makes it through somehow-swimming and lots of drinking may have done the trick at that point. Girl also tries chiropractors and acupuncture. Girl finds several acupuncture needles in her skull after third visit to scary dark Chinese medicine store, where they also make her drink dark, gloopy medicine. Girl decides to drink gin and tonics instead.
Girl moves to West Coast to be full time entertainment lawyer and full time girlfriend to drummer.
Girl studies for the Bar. Girl writes for five, six hours a day. Three days before said Bar, Girl's hand refuses to close around the pencil any longer.
Girl must cancel the Bar. The BAR. That test that was to determine the rest of her life. That test for which she had studied for eight hours or more the entire summer. That test that all her other classmates were taking.
Girl gets to, instead of taking exam to be lawyer, do physical therapy and wear a super attractive plastic cast on her right hand. A cast that does nothing to keep drunk idiots from bumping into her at shows.
Girl tries to get a minimum wage job at mall. Girl is denied. Girl tries to tutor. No one needs a tutor who cannot write. Girl's life is not going where she had imagined it.
Girl, finally, gets to type the bar and passes! Hallelujah!
Girl finds job at entertainment law firm which is 2.5 hours of driving away from boyfriend's apartment. Girl drives stick shift truck with no radio or air conditioner 2.5 hours each way. Girl is not happy. People who know Girl and must be around Girl are not happy.
Girl's new job is interesting and challenging, but Girl cannot understand what is going on with her pain levels. Her hand is working sometimes, but often times, her whole body is in such intense pain that she cannot focus on anything. No use going to another doctor, right? Girl is just a baby. Girl just can't handle what everyone else can handle and her hand issue? Well, no one knows, but it doesn't seem serious. Well, unless you call not being able to use it serious...
Girl continues like this for several years. She moves to new, even more interesting job. Girl does not want to be a whiner (but she knows she is, sometimes.) Girl just wants to do what she wants to do. She tries different nutritional diets, different PTs, different massages, different chiros. It's all random. She struggles to get by and tries to use voice activated software to substitute for her inability to write. It's the late 90s. Voice activated software was like Pac-man. It does not help, except in creating interesting automatic writing poetry.
One day, Girl's hand and back are causing her to be in agony. Friend suggests her chiropractor. Girl, in desperation, runs to one more chiro. This wonderful and kind man says the magic words to her: "You have fibromyalgia," and the sky opens up and the angels begin to sing.
What did the angels sing? Tune in tomorrow and find out...
Thursday, June 4, 2009
WTF am I writing this blog?
The first blog must be the hardest to write. I know I am having a hell of a time with it.
I'll begin with the reason for this blog: I have been in pain for most of my adult life. Much of that time, the reason for that pain was a complete mystery. More recently, the reason for the pain is only a slight mystery. I have sought answers in every modality and with (almost) every doctor in various metropolitan areas. There has been so much contradicting information and advice and recommendations. So many doctors have thrown out what the last doctor has said and the eastern doctors versus the western doctors could be its own video game, with how much vehemence they generally have for one another's perspective. I have had such a difficult time sorting through the information. I will be starting a Fibro "Boot Camp" at a major hospital next week and I wanted to document that experience. By documenting that experience, I hope to get a better handle on my progress in this program, as well as share this knowledge with other fibro patients.
I'll begin with the reason for this blog: I have been in pain for most of my adult life. Much of that time, the reason for that pain was a complete mystery. More recently, the reason for the pain is only a slight mystery. I have sought answers in every modality and with (almost) every doctor in various metropolitan areas. There has been so much contradicting information and advice and recommendations. So many doctors have thrown out what the last doctor has said and the eastern doctors versus the western doctors could be its own video game, with how much vehemence they generally have for one another's perspective. I have had such a difficult time sorting through the information. I will be starting a Fibro "Boot Camp" at a major hospital next week and I wanted to document that experience. By documenting that experience, I hope to get a better handle on my progress in this program, as well as share this knowledge with other fibro patients.
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