It never ceases to amaze me when I think of how much power music has. It takes me right back to that time in my life that was enveloped by that song, that genre. I can listen to cross-over country from the 80's and be right back on Washington street in Vallejo, eight or nine years old. I can listen to Chris Deburg and be in eighth grade again. I hear hair bands and I'm 16, 17, 18 years old...young, strong, and free. I hear CCR and I'm standing in my garage in Florida, watching these huge, fat raindrops from a sudden summer rainstorm with my kids. I hear music from 2007 and I'm in the middle of moving from Maryland to Michigan and my life is a little upside down. I can be right there again, feeling how I felt when I heard that song. It's a blessing and a curse because I can be in my memory, but sometimes that is just agony.
I'm going through hell with my daughter right now. She's 18 and headstrong and making her own life decisions. It's hard because I love her so much and I don't want to see her stumble. I'd give anything....anything......to roll the clock back 10 years and be standing in that garage again with her, listening to CCR and watching the rain. It's incredible how quickly the time passes. The days and years seem to take forever sometimes, but then you blink and they're walking up the aisle to get their diploma...and they're gone.
I don't think everyone has that same connection to music. The ability to be transported back in time to the beat. Like I said it's a blessing and a curse. I love that I can hear a song and close my eyes and relive the best moments in my life, but I also hurt just as much if that song is connected to a painful memory. "I Believe" by Diamond Rio will always remind me of how I felt when I lost Angie, and "One Night At A Time" will always remind me of the first time my husband picked me up and took me out to a nice restaurant and then the 50th State Fair.
I love that music connects me to people, whether they are still in my life or not. If I miss someone that's now gone, either because they've passed on or simply moved on with their life, I can listen to something that brings them back for just a few minutes. But sometimes that works against me because I'll get caught off-guard by a song on the radio or just somewhere in my day and BOOM...I get hit with a memory, whether I wanted it or not.
It never ceases to amaze me that a beat and a melody have so much power.
Thursday, February 24, 2011
Sunday, February 6, 2011
twenty, thirty, forty
I'm going to be 37 in three weeks, and I haven't quite figured out how I feel about it. This officially puts me in my late thirties now, right? What do you do when your body thinks it's in its sixties, but your mind is still somewhere in your late twenties or early thirties?
I handled turning 30 with relative ease actually. I freaked when I turned 27. For some reason reaching my "late twenties" just sent me over the edge. (was that really a decade ago now? holy crap.)But by the time I hit 30, I had three kids, was married, and pretty settled, so it wasn't very traumatic. The d.h. happened to be deployed for that one, so I took myself out to dinner too.
So, now how does 37 look? Well, still married. I have been with the hubs for 12 1/2 years, married just over 11 of those. We have an 18 year old that I keep threatening kidnapping schemes to try to bring her back home, a 16 year old boy that tests my patience on a regular basis, and a 7 year old that I spend all day, every day with because we're working our way through third grade. Some days whether she likes it or not.
If I died tomorrow, people would notice. I have friends and family, and it's fair to say in 37 years, I've made a pretty good life for myself. If C doesn't hear from me on twitter for a few days, she sends out a tweet making sure I'm still alive and in one piece. I had a friend send me a note on FB the other day asking after me because she had noticed I was quiet lately. That feels really good! If I completely disappear offline for a day, people notice and realize that typically means something is really wrong that day. I have loved ones, and I am grateful.
But I was thinking about my house the other day and noticed that if someone were to poke around, they might wonder how old the occupant is. I have medicine bottles stashed in several different places, depending on which medicine it is and when I need to take it. I have Ensure shakes in the fridge for the days I can't get much food down. My cane is in the front coat closet, and these days I occasionally ask the karma gods if I'm going to need to get it out soon because my hip has been bothering me. I have pain meds, nausea meds, thyroid meds, and sleep meds. It might make a person wonder.
I always think that a person's home tells a lot about their story. Mine says that my body thinks it's somewhere in its sixties, but if you look through my computer, you'd see that my mind is still some where in my late twenties....maybe early thirties. I play video games, I still have all of my college papers stuck off in my documents, and I am on social networking sites goofing off.
Do you ponder the years when your birthday comes up, spoonies? Are some years more significant than others?
I handled turning 30 with relative ease actually. I freaked when I turned 27. For some reason reaching my "late twenties" just sent me over the edge. (was that really a decade ago now? holy crap.)But by the time I hit 30, I had three kids, was married, and pretty settled, so it wasn't very traumatic. The d.h. happened to be deployed for that one, so I took myself out to dinner too.
So, now how does 37 look? Well, still married. I have been with the hubs for 12 1/2 years, married just over 11 of those. We have an 18 year old that I keep threatening kidnapping schemes to try to bring her back home, a 16 year old boy that tests my patience on a regular basis, and a 7 year old that I spend all day, every day with because we're working our way through third grade. Some days whether she likes it or not.
If I died tomorrow, people would notice. I have friends and family, and it's fair to say in 37 years, I've made a pretty good life for myself. If C doesn't hear from me on twitter for a few days, she sends out a tweet making sure I'm still alive and in one piece. I had a friend send me a note on FB the other day asking after me because she had noticed I was quiet lately. That feels really good! If I completely disappear offline for a day, people notice and realize that typically means something is really wrong that day. I have loved ones, and I am grateful.
But I was thinking about my house the other day and noticed that if someone were to poke around, they might wonder how old the occupant is. I have medicine bottles stashed in several different places, depending on which medicine it is and when I need to take it. I have Ensure shakes in the fridge for the days I can't get much food down. My cane is in the front coat closet, and these days I occasionally ask the karma gods if I'm going to need to get it out soon because my hip has been bothering me. I have pain meds, nausea meds, thyroid meds, and sleep meds. It might make a person wonder.
I always think that a person's home tells a lot about their story. Mine says that my body thinks it's somewhere in its sixties, but if you look through my computer, you'd see that my mind is still some where in my late twenties....maybe early thirties. I play video games, I still have all of my college papers stuck off in my documents, and I am on social networking sites goofing off.
Do you ponder the years when your birthday comes up, spoonies? Are some years more significant than others?
Learning to be still through the pain
I wish I felt strong enough to handle what's coming, but after yesterday I just feel small, and weak, and scared. I struggled through another god awful migraine/ just-kill-me-now day yesterday, and I scheduled my next procedure and had my pain specialist change my meds.
I woke up yesterday with a headache, which is never a good sign. I've had migraines all my life (which must have made me a fun child to raise), so I've learned to be very,very still and escape from the pain. But it doesn't always work, if the pain comes in waves, sometimes I just can't help but to roll over and groan at the peak of the wave, but god knows I try to just be very still and escape into my head. Everybody has a place that they think of, that they escape to, when they are in pain or feeling sick, or whatever. Sometimes, it's imagining laying on the beach in the warm summer sun. You might try to think of the smell of the ocean and of the suntan lotion, the warmth on your body, and the gritty texture of the sand beneath you as you attempt to leave the pain behind.
Yesterday, I had "Fire and Rain" by James Taylor stuck in my head, so I kept thinking of the lyrics of the song. I imagined myself sitting in my mom's house in Hawaii with my daughter because I miss her so much. I thought about being somewhere else, anywhere else, because the pain was more than I could take. I concentrated on being very still, not moving at all, just breathing, as I escaped into my head, away from the hurt my body was struggling with. It's not an easy thing to do, and I sure have not mastered it yet. But I try, and I escape when I am in pain, or when I'm scared...or when I'm in the middle of a procedure that scares the hell out of me.
I scheduled the next step in handling the pain in my neck. It seems I have Facet Syndrome and the joints in the spine in the neck (specifically C6 and C7) are deteriorating and that's what's causing me pain. The solution to that is burning the nerves in those joints, or what's called a Rhizotomy. I've been with a friend of mine as she went through the procedure, and now that I'm facing it in my neck, it's really scary. But, Ging and I just tell ourselves that if we can get to the other side of that 30 minutes, it will be okay. Sometimes, you just have to concentrate on getting to the other side.
I also had my meds changed from Percocet to Morphine. Apparently, there's some kind of barrier when it comes to pain meds and docs put you off and put you off, and then finally....they realize that you have something really wrong, and pow...pain meds. It's a hell of a process to be on pain meds in America these days...at least legitimately. But they finally give me what I need, and I comply with all the bullshit that goes along with it.
So, be still my Spoonies, when the pain comes. Imagine the beaches in Hawaii. Escape to where you are safe and calm.
I woke up yesterday with a headache, which is never a good sign. I've had migraines all my life (which must have made me a fun child to raise), so I've learned to be very,very still and escape from the pain. But it doesn't always work, if the pain comes in waves, sometimes I just can't help but to roll over and groan at the peak of the wave, but god knows I try to just be very still and escape into my head. Everybody has a place that they think of, that they escape to, when they are in pain or feeling sick, or whatever. Sometimes, it's imagining laying on the beach in the warm summer sun. You might try to think of the smell of the ocean and of the suntan lotion, the warmth on your body, and the gritty texture of the sand beneath you as you attempt to leave the pain behind.
Yesterday, I had "Fire and Rain" by James Taylor stuck in my head, so I kept thinking of the lyrics of the song. I imagined myself sitting in my mom's house in Hawaii with my daughter because I miss her so much. I thought about being somewhere else, anywhere else, because the pain was more than I could take. I concentrated on being very still, not moving at all, just breathing, as I escaped into my head, away from the hurt my body was struggling with. It's not an easy thing to do, and I sure have not mastered it yet. But I try, and I escape when I am in pain, or when I'm scared...or when I'm in the middle of a procedure that scares the hell out of me.
I scheduled the next step in handling the pain in my neck. It seems I have Facet Syndrome and the joints in the spine in the neck (specifically C6 and C7) are deteriorating and that's what's causing me pain. The solution to that is burning the nerves in those joints, or what's called a Rhizotomy. I've been with a friend of mine as she went through the procedure, and now that I'm facing it in my neck, it's really scary. But, Ging and I just tell ourselves that if we can get to the other side of that 30 minutes, it will be okay. Sometimes, you just have to concentrate on getting to the other side.
I also had my meds changed from Percocet to Morphine. Apparently, there's some kind of barrier when it comes to pain meds and docs put you off and put you off, and then finally....they realize that you have something really wrong, and pow...pain meds. It's a hell of a process to be on pain meds in America these days...at least legitimately. But they finally give me what I need, and I comply with all the bullshit that goes along with it.
So, be still my Spoonies, when the pain comes. Imagine the beaches in Hawaii. Escape to where you are safe and calm.
Fibro Ads
When I'm out and about, I don't look sick or like I have any kind of disability. If I were to have a handicap placard in my car and pull into one of those parking spaces and then get out of my car and walk into the store or restaurant, I would probably be one of those people that snarky people look at and think ' ugh, I hate it when perfectly healthy people take those parking spots'.
I don't have a placard for my car, but I will eventually. And it will probably be before I look sick enough for most people to think I need one, and before I need my cane again or a wheelchair.
My point is that there is no recovery for Fibromyalgia, or myo-fascial pain syndrome, or a thousand other invisible diseases. There's a whole nation of us that have things like Rheumatoid Arthritis or bulging disks, herniated disks, Osteo-Arthritis, Fibromyalgia, and a whole host of other pain disorders.
No one can tell by looking at me that I have an artificial hip. or that someday that hip may fail or loosen and then I'm fooked. If I wouldn't have had my surgery almost three years ago, I'd already be in a wheelchair, having finally lost the ability to walk. But I'm getting sidetracked because my hip has been bothering me a lot lately. I still have arthritis in what's left of the bone in the area, and between going dancing at the Khaki Ball and the chilly, damp weather we've been having, I've been feeling it. So, every now and then I wonder if I'll lose the ability to walk someday.
But what I was meaning to work my way towards was pointing out that there is no cure, so it really annoys me when "Fibromyalgia Clinics" advertise and spout that they offer recovery options for Fibro patients. That's like telling us that it's not a real disorder, and you could fix it if you just try hard enough. It IS true that symptoms can be mitigated by some meds for some people and by eliminating some foods from one's diet, but not everything works for everybody. And there is no cure.
My doctors are now telling me that I have more of a myo-fascial pain syndrome stemming from DJD, but I am still an advocate for Fibro. Because it doesn't matter what name you put on what's wrong with me, my existence doesn't change. It doesn't matter how you label it, I'm not going to get better.I know there are other Fibro patients out there that feel the same way. When we're fighting with our doctors, we wonder why they are fighting so hard against us when they know we're not going to get better either. The only thing you can do, doc, is keep me from getting worse. Why are you fighting with me?
This whole post came from a reader asking me about these billboards she saw with just "Fibromyalgia" and a phone number. She asked what are they advertising? Clinics? Meds that don't work? I have tried all of the current "FDA Approved" Fibro meds. They turn me into a crazy person. I finally put my foot down and told my doctors they were no longer allowed to mess with the chemistry in my brain.
I've seen plenty of progress in the last couple of years when it comes to Fibro, but I have seen setbacks too. What do you think, my darling readers, have I made an impact? Have I raised awareness or enlightened some of you? Have you learned something? Is there something else I need to address? Questions, comments, and input are always, always appreciated!
Thank you all again, for coming along on my journey, and for reading my ramblings!
I don't have a placard for my car, but I will eventually. And it will probably be before I look sick enough for most people to think I need one, and before I need my cane again or a wheelchair.
My point is that there is no recovery for Fibromyalgia, or myo-fascial pain syndrome, or a thousand other invisible diseases. There's a whole nation of us that have things like Rheumatoid Arthritis or bulging disks, herniated disks, Osteo-Arthritis, Fibromyalgia, and a whole host of other pain disorders.
No one can tell by looking at me that I have an artificial hip. or that someday that hip may fail or loosen and then I'm fooked. If I wouldn't have had my surgery almost three years ago, I'd already be in a wheelchair, having finally lost the ability to walk. But I'm getting sidetracked because my hip has been bothering me a lot lately. I still have arthritis in what's left of the bone in the area, and between going dancing at the Khaki Ball and the chilly, damp weather we've been having, I've been feeling it. So, every now and then I wonder if I'll lose the ability to walk someday.
But what I was meaning to work my way towards was pointing out that there is no cure, so it really annoys me when "Fibromyalgia Clinics" advertise and spout that they offer recovery options for Fibro patients. That's like telling us that it's not a real disorder, and you could fix it if you just try hard enough. It IS true that symptoms can be mitigated by some meds for some people and by eliminating some foods from one's diet, but not everything works for everybody. And there is no cure.
My doctors are now telling me that I have more of a myo-fascial pain syndrome stemming from DJD, but I am still an advocate for Fibro. Because it doesn't matter what name you put on what's wrong with me, my existence doesn't change. It doesn't matter how you label it, I'm not going to get better.I know there are other Fibro patients out there that feel the same way. When we're fighting with our doctors, we wonder why they are fighting so hard against us when they know we're not going to get better either. The only thing you can do, doc, is keep me from getting worse. Why are you fighting with me?
This whole post came from a reader asking me about these billboards she saw with just "Fibromyalgia" and a phone number. She asked what are they advertising? Clinics? Meds that don't work? I have tried all of the current "FDA Approved" Fibro meds. They turn me into a crazy person. I finally put my foot down and told my doctors they were no longer allowed to mess with the chemistry in my brain.
I've seen plenty of progress in the last couple of years when it comes to Fibro, but I have seen setbacks too. What do you think, my darling readers, have I made an impact? Have I raised awareness or enlightened some of you? Have you learned something? Is there something else I need to address? Questions, comments, and input are always, always appreciated!
Thank you all again, for coming along on my journey, and for reading my ramblings!
The Velveteen Xunnie?
I was recently reminded of the book The Velveteen Rabbit, and specifically the part of the book during which the stuffed animals are having a discussion...
"'You BECOME,' the horse said to the rabbit. 'It doesn't happen all at once. It takes a very long time. Generally by the time you are REAL most of your hair has been loved off and your eyes drop out and you get loose in the joints and very shabby. But those things don't matter, because once you are real, you can't be ugly, except to people who don't understand.'"
I just received a package from the home medical supplies place, dropping off my new braces/pads for my elbows that I'm supposed to sleep in to protect the ulnar nerve so my arms don't fall asleep all the time. Sort of a silly thing to have to have, don't you think? But it got me to thinking that this isn't the first time I have had to have in-home medical supplies and care. I've had walkers and crutches. Oxygen tanks and braces. Nurses and physical therapists.
So, is it true, do you think? If all my hair were to be rubbed off and as I get sort of shabby and loose in the joints, am I becoming more real? I suppose the argument could be made that all people go through that process. It is, after all, our elderly that are often the most beautiful if they have lived the life with the greatest love and it rubs off. It just so happens that Xunnie is aging a little faster than most people do.
So I was laying on my bed with ice on my neck a little while ago, wondering if I have become more real because of everything I have been through. I was wondering how I feel about facing the fifth surgery soon. I was wondering if living one's life on double time really opens up the big picture?
It's easy to get lost in details and drama, especially these days. My hope is that I have become more real and developed the ability to recognize what really matters, even if the hair has been loved off of it, and the eyes have dropped out, and it looks a little shabby. I hope that I am more real because of what I have been through and because I know I don't have the same kind of time someone else might.
A friend of mine recently asked me where I would be at 70 as she thought of her own mother's natural degeneration. I simply responded that I may never see 70. I won't have another 34 years. That must be hard to think about for the average thirty-something, but it's something I already know. But hopefully by then, all my hair will be loved off and I couldn't possibly be ugly, except to those who don't understand.
"'You BECOME,' the horse said to the rabbit. 'It doesn't happen all at once. It takes a very long time. Generally by the time you are REAL most of your hair has been loved off and your eyes drop out and you get loose in the joints and very shabby. But those things don't matter, because once you are real, you can't be ugly, except to people who don't understand.'"
I just received a package from the home medical supplies place, dropping off my new braces/pads for my elbows that I'm supposed to sleep in to protect the ulnar nerve so my arms don't fall asleep all the time. Sort of a silly thing to have to have, don't you think? But it got me to thinking that this isn't the first time I have had to have in-home medical supplies and care. I've had walkers and crutches. Oxygen tanks and braces. Nurses and physical therapists.
So, is it true, do you think? If all my hair were to be rubbed off and as I get sort of shabby and loose in the joints, am I becoming more real? I suppose the argument could be made that all people go through that process. It is, after all, our elderly that are often the most beautiful if they have lived the life with the greatest love and it rubs off. It just so happens that Xunnie is aging a little faster than most people do.
So I was laying on my bed with ice on my neck a little while ago, wondering if I have become more real because of everything I have been through. I was wondering how I feel about facing the fifth surgery soon. I was wondering if living one's life on double time really opens up the big picture?
It's easy to get lost in details and drama, especially these days. My hope is that I have become more real and developed the ability to recognize what really matters, even if the hair has been loved off of it, and the eyes have dropped out, and it looks a little shabby. I hope that I am more real because of what I have been through and because I know I don't have the same kind of time someone else might.
A friend of mine recently asked me where I would be at 70 as she thought of her own mother's natural degeneration. I simply responded that I may never see 70. I won't have another 34 years. That must be hard to think about for the average thirty-something, but it's something I already know. But hopefully by then, all my hair will be loved off and I couldn't possibly be ugly, except to those who don't understand.
Perspective
I'm reading a new book called "An Unfinished Marriage" and it's interesting to see the life of a mother and wife from the outside after living inside of it for so many years. I just stumbled upon a page talking about how the author fractured her ankle and ended up having surgery to correct it, thereby putting her on bedrest for about eight weeks and the effect it had on her marriage of thirty years.
"....remembering that moment helps me realize that being helpless or weak has its place in the life of a marriage - that to let down one's guard, to be touched for reasons other than sex, can carry a couple to an unexpected level of intimacy." ( An Unfinished Marriage, p. 126). She goes on to talk about how she had always been the giver, which gave her the benefit of retaining control. I see myself in this because the d.h. and I just had a disagreement today about me feeling like he treated me as though I was helpless, and I objected because today was one of those days that I could do what I wanted, and what I needed to do around my house.
I know there are days that I can't, days that I am not as self-sufficient as I used to be....as I'd like to be. But I can't just give up. I have to push myself to keep up with a mostly typical life of a thirty-something stay at home mom. But I had my eyes opened by that simple passage, and realized that I'm fighting to retain control as well. I'm much happier if I have control of the situation, and over my existence.
One of the tenants of life that I have impressed upon my children is that each person needs to fashion his or her own existence, or others will be more than happy to do it for you. One of the main struggles in a life of constant, chronic medical issues is that loss of control, and it's hard to face. Just like the author of the books says that she has never been comfortable receiving...I know very well that I have a hard time taking up time and space, and that's part of what I'm struggling with as I realize that I am weaker...and even sometimes helpless now.
I just thought that this was a good way to touch on another aspect of life as I know it. My docs still are saying it's quite probably not Fibro anymore, but instead DJD (Dejenerative Joint Disease), but life as I know it is pretty much the same. And I started this blog to raise awareness, to share what life is like for people like me, and Ging, and her mom, and many others. I suppose that includes touching on topics such as how living with a chronic condition affects our relationships.
Does it strain it sometimes? Absolutely. But my d.h. knows this is not what I chose. I wanted to be a dancer, but fate...well, she said no. Does it lead to a place where only he and I know? Yes, sometimes it does. Joan Anderson, the author of the book I'm reading, is right. It does lead to an unexpected level of intimacy. The balance of control shifts and you have to trust one another more than might typically be the case.
"....in sickness and in health..."
"....remembering that moment helps me realize that being helpless or weak has its place in the life of a marriage - that to let down one's guard, to be touched for reasons other than sex, can carry a couple to an unexpected level of intimacy." ( An Unfinished Marriage, p. 126). She goes on to talk about how she had always been the giver, which gave her the benefit of retaining control. I see myself in this because the d.h. and I just had a disagreement today about me feeling like he treated me as though I was helpless, and I objected because today was one of those days that I could do what I wanted, and what I needed to do around my house.
I know there are days that I can't, days that I am not as self-sufficient as I used to be....as I'd like to be. But I can't just give up. I have to push myself to keep up with a mostly typical life of a thirty-something stay at home mom. But I had my eyes opened by that simple passage, and realized that I'm fighting to retain control as well. I'm much happier if I have control of the situation, and over my existence.
One of the tenants of life that I have impressed upon my children is that each person needs to fashion his or her own existence, or others will be more than happy to do it for you. One of the main struggles in a life of constant, chronic medical issues is that loss of control, and it's hard to face. Just like the author of the books says that she has never been comfortable receiving...I know very well that I have a hard time taking up time and space, and that's part of what I'm struggling with as I realize that I am weaker...and even sometimes helpless now.
I just thought that this was a good way to touch on another aspect of life as I know it. My docs still are saying it's quite probably not Fibro anymore, but instead DJD (Dejenerative Joint Disease), but life as I know it is pretty much the same. And I started this blog to raise awareness, to share what life is like for people like me, and Ging, and her mom, and many others. I suppose that includes touching on topics such as how living with a chronic condition affects our relationships.
Does it strain it sometimes? Absolutely. But my d.h. knows this is not what I chose. I wanted to be a dancer, but fate...well, she said no. Does it lead to a place where only he and I know? Yes, sometimes it does. Joan Anderson, the author of the book I'm reading, is right. It does lead to an unexpected level of intimacy. The balance of control shifts and you have to trust one another more than might typically be the case.
"....in sickness and in health..."
The pain I've been holding onto...
I'm a very musical person. I can't play a single instrument (I did play the flute in 5th grade...just not well....oh, and I played guitar in high school) and I don't write songs, but there is something in music that moves my soul and gives me life and breath. My heart is a dancer's heart, but my body...well, she says not so much.
So, every once in a while I hear a song lyric that just takes my breathe away. Like literally, I just feel like I've had the wind knocked out of me, and I realize something for what it truly might be. I've been walking around for days with country music in my head from the Jason Aldean concert I went to last Sunday, so when a friend of mine posted something from what I knew to be an alternative band, I followed the link and listened to it thinking I would at least have something new in my head today.
This is the part that I remind you, my darling readers, that Fibro or myofascial pain syndrome or, well anything chronic medical condition really, is hugely tied to where your mental and emotional status is as well as taking care of oneself physically. My heart has been struggling with the fact that my oldest child is now 18, and graduated, and trying to find her way out in the big, bad world, and I would do anything to just gather her back up into my little nest and keep her and protect her....but I can't. I have to let go. I wasn't given a choice on this one.
So, in this new song, I heard the lyric "the pain I've been holding onto" and it just really struck me. How often to we hold onto something that hurts without realizing it? How often does pain just become a part of who we are? I'm not just talking about the population that lives like I do, with physical pain, but even all of the healthy people. Do you walk around with something that hurt you and keeps hurting you, and not realize that you've been hurting so long, you've forgotten how not to hurt?
I really love the lyrics of this song:
What do you think, readers? Even if this kind of music isn't your favorite, listen to the lyrics and think about your first scars. Did they fade? Are you holding onto pain?
I am forever on a quest to understand the human mind, that's why I was a psych major. But all that did was tell me that exceptionally well educated people that spend their lives listening to people describe their early childhood don't have any more of a clue about our minds that the rest of us.
We all walk around damaged in some way, but what pain are you holding on to?
So, every once in a while I hear a song lyric that just takes my breathe away. Like literally, I just feel like I've had the wind knocked out of me, and I realize something for what it truly might be. I've been walking around for days with country music in my head from the Jason Aldean concert I went to last Sunday, so when a friend of mine posted something from what I knew to be an alternative band, I followed the link and listened to it thinking I would at least have something new in my head today.
This is the part that I remind you, my darling readers, that Fibro or myofascial pain syndrome or, well anything chronic medical condition really, is hugely tied to where your mental and emotional status is as well as taking care of oneself physically. My heart has been struggling with the fact that my oldest child is now 18, and graduated, and trying to find her way out in the big, bad world, and I would do anything to just gather her back up into my little nest and keep her and protect her....but I can't. I have to let go. I wasn't given a choice on this one.
So, in this new song, I heard the lyric "the pain I've been holding onto" and it just really struck me. How often to we hold onto something that hurts without realizing it? How often does pain just become a part of who we are? I'm not just talking about the population that lives like I do, with physical pain, but even all of the healthy people. Do you walk around with something that hurt you and keeps hurting you, and not realize that you've been hurting so long, you've forgotten how not to hurt?
I really love the lyrics of this song:
What do you think, readers? Even if this kind of music isn't your favorite, listen to the lyrics and think about your first scars. Did they fade? Are you holding onto pain?
I am forever on a quest to understand the human mind, that's why I was a psych major. But all that did was tell me that exceptionally well educated people that spend their lives listening to people describe their early childhood don't have any more of a clue about our minds that the rest of us.
We all walk around damaged in some way, but what pain are you holding on to?
Notes from under the bed....
I just looked and saw that my last update was September 3rd, 17 days ago....more than two weeks ago. I have been thinking about my blog, and about the commitment I wanted to make to post at least four or five times a week, but the truth is I haven't written mostly just because I didn't want to.
I did have my Facet Block, but it ended up being last Tuesday, instead of the prior Thursday, and it was an incredibly painful procedure and a difficult one to recover from. Today (a week later) is the first day I haven't woken up with a massive headache or praying someone would just save me and chop my head off because my neck was killing me. I'm still pretty tender and the back of my right hand still has a really gorgeous bruise from the IV, but I'm alive, in one piece and grateful I am not in as much pain as I was four days ago.
When I am, however, in that painful place, I think about all sorts of things. I'm forever telling my d.h. that it's noisy in here. I think about things I have read, or wrote, or learned in college. I think about current world politics, the way established religions war over ideas with each other, and I think about stuff in WoW. I am in a constant state of confused over so much that I am surrounded with in the world, so when I'm sitting on the sofa shaking from the pain, I escape into my head and think about things I'll probably never understand.
For example, I have found huge examples of selfishness lately, but just when I think that the world is simply filled with thoughtless, selfish people I hear "oh, yeah, I've been thinking about you/wondering how you are/reading your blogs" and I find out I matter a lot more than maybe I thought I did.
I have a hard time taking up time and space. The outrageous Cris is really just a facade. And every time I find out that someone thinks about me and notices when I don't blog/tweet/facebook it floors me. I keep looking at the world around me and thinking 'love me, love me, love me!!!'....and every once in a while, it whispers back (usually just when I need it the most) "I do".
I did have my Facet Block, but it ended up being last Tuesday, instead of the prior Thursday, and it was an incredibly painful procedure and a difficult one to recover from. Today (a week later) is the first day I haven't woken up with a massive headache or praying someone would just save me and chop my head off because my neck was killing me. I'm still pretty tender and the back of my right hand still has a really gorgeous bruise from the IV, but I'm alive, in one piece and grateful I am not in as much pain as I was four days ago.
When I am, however, in that painful place, I think about all sorts of things. I'm forever telling my d.h. that it's noisy in here. I think about things I have read, or wrote, or learned in college. I think about current world politics, the way established religions war over ideas with each other, and I think about stuff in WoW. I am in a constant state of confused over so much that I am surrounded with in the world, so when I'm sitting on the sofa shaking from the pain, I escape into my head and think about things I'll probably never understand.
For example, I have found huge examples of selfishness lately, but just when I think that the world is simply filled with thoughtless, selfish people I hear "oh, yeah, I've been thinking about you/wondering how you are/reading your blogs" and I find out I matter a lot more than maybe I thought I did.
I have a hard time taking up time and space. The outrageous Cris is really just a facade. And every time I find out that someone thinks about me and notices when I don't blog/tweet/facebook it floors me. I keep looking at the world around me and thinking 'love me, love me, love me!!!'....and every once in a while, it whispers back (usually just when I need it the most) "I do".
So, I'm apparently old....
I got to see my new pain doc yesterday, and to be very honest I did not expect much of a result. I figured I would meet some new doctor that would throw pain meds at me for a few months while I worked with my primary care doc to get into physical therapy. But I gotta say, it went so much better than I could have ever predicted.
I have a really great pain management doc! He's an anesthesiologist who works with a neurosurgeon and a physical medicine and rehabilitation (PMR) specialist all in one office. He is also the only surgeon in Maryland (and one of the few in the country) that does the procedure (out patient laproscopic surgery) I will probably need in the next couple of months.
He reviewed my case, my symptoms, and my prior procedures and took a look at the MRI from my neck that was done in January....and pronounced that I have Facet Syndrome in my neck, meaning that the joints in my neck are degenerating. That combined with the fact that I have already had a hip replacement is pointing to me having Degenerative Joint Disease (DJD). I thought it might be because I was a dancer and a runner in another life, but no...it's congenital it seems. Lucky me.
My mom keeps asking why I have so much wrong, why I have to go through all of this. It looks like I may finally have an answer to that question.
I'm scheduled for an in-office procedure (Facet Block) next Thursday. It's a diagnostic procedure that will definitively diagnose Facet Syndrome and set me up for the next surgery. My medical insurance has recently starting refusing to pay for a procedure that would burn the nerves in these joints that are causing me pain, so my doctor described a surgical option that accomplishes the same thing. He'll go in laproscopically and clip the nerve instead of burning it, thus offering me (hopefully) longer term pain relief.
I have miraculously been sent once again where I need to be. I ended up in Michigan the year that I finally needed my hip replaced and found the number two surgeon in the country to offer me an option that would last me the rest of my life, and now I have ended up once again just where I need to be. My new pain doc is the only surgeon in Maryland that does this surgery for my neck.
Thank you Karma, for you are kind when I need it most.
I have a really great pain management doc! He's an anesthesiologist who works with a neurosurgeon and a physical medicine and rehabilitation (PMR) specialist all in one office. He is also the only surgeon in Maryland (and one of the few in the country) that does the procedure (out patient laproscopic surgery) I will probably need in the next couple of months.
He reviewed my case, my symptoms, and my prior procedures and took a look at the MRI from my neck that was done in January....and pronounced that I have Facet Syndrome in my neck, meaning that the joints in my neck are degenerating. That combined with the fact that I have already had a hip replacement is pointing to me having Degenerative Joint Disease (DJD). I thought it might be because I was a dancer and a runner in another life, but no...it's congenital it seems. Lucky me.
My mom keeps asking why I have so much wrong, why I have to go through all of this. It looks like I may finally have an answer to that question.
I'm scheduled for an in-office procedure (Facet Block) next Thursday. It's a diagnostic procedure that will definitively diagnose Facet Syndrome and set me up for the next surgery. My medical insurance has recently starting refusing to pay for a procedure that would burn the nerves in these joints that are causing me pain, so my doctor described a surgical option that accomplishes the same thing. He'll go in laproscopically and clip the nerve instead of burning it, thus offering me (hopefully) longer term pain relief.
I have miraculously been sent once again where I need to be. I ended up in Michigan the year that I finally needed my hip replaced and found the number two surgeon in the country to offer me an option that would last me the rest of my life, and now I have ended up once again just where I need to be. My new pain doc is the only surgeon in Maryland that does this surgery for my neck.
Thank you Karma, for you are kind when I need it most.
Everything's Eventual
I have fight in me today. I'm working my way off all the unnecessary meds and fighting to get food down. It might take me close to an hour to get a yogurt down (Greek yogurt...not that slimy American stuff), but I got it down and that's 10 grams of protein. Ten grams of energy to fight back!
I saw a new neurologist this morning (at the ungodly hour of 8 o'clock!), but it was totally worth dragging my ass out of bed at 6:30. He had reviewed my file and performed the best, most comprehensive exam I have had since my symptoms started. He was great! He listened and examined me thoughtfully, and gave me good news.
I do not have MS, even though I meet some of the criteria, I don't have the right symptoms and he (Dr. Epstein....who came down from Bethesda) is confident that I really don't even have Fibro. Basically, what it boils down to is a myofascial pain syndrome stemming from the fact that my left leg is close to an inch shorter than my right leg and my body is kicking it's own ass trying to compensate.
Additionally, all the weird pain-y crap in my arms is due to my ulnar nerve being compressed near my elbow. You know that nerve that you hit when you smack your funny bone? Yeah, that one is compressed...Doc says it's not that uncommon, especially in thin people. (Side note: all this crap has made me lose close to 5 pounds in the last week and a half....so, yay for thin and my pants fitting better, but apparently there are issues if one is thin, sort of like if one is overweight).
Finally, because I am such a raging insomniac, I'm not getting restful, restorative sleep and that is creating a viscous cycle. So, the plan of attack is to get me these brace/pad things to wear on my elbows when I sleep (I know, weird, right??) that will alleviate those symptoms. Doc suggested a physical medicine/sports medicine specialist for the myofascial symptoms (muscle pain issues for those not familiar with the term). All of which will hopefully lead to the ability to sleep better...thus allowing me more restorative sleep and hopefully breaking the cycle.
This is the first time I've had a doctor break down the symptoms by themselves and examine each one without trying to group everything together and put it all in a pretty little box. Apparently my previous pain specialists (while working with the right intentions) were doing the wrong things. I don't have a central nervous system issue. It's more of a peripheral nerve issue in my arms and a muscle pain issue in my shoulders.
This I can work with. This I am actually excited about because there is definition and hope! I'll wear my silly little pads for sleeping in on my elbows and I'll go to physical therapy for muscle pain. I'll get shoes that help even me out. I can get better.
Thank you to the neurologist that traveled all the way down to our remote little Southern Maryland from Bethesda and helped me so much!
St. Elmo's Fire
Sometimes I think I have got to be the biggest dork on the planet. I never saw St. Elmo's Fire back in the 80's when it came out and the Brat Pack was the thing, so I put it on my Netflix Instant Play and watched it the other night. The next day I promptly told my bff that I didn't recommend watching it when one has a) just moved 800 miles, b) is feeling like crap anyway, and c) just had their kid turn 18 and move 6,000 miles away. I bawled.
I'm sure you've seen it (and if you haven't I do recommend it, just not under the above circumstances) and it's set in Washington D.C., which is about an hour or so from where I live now. I've been all over the District so I recognized most of the places in the movie. But it must have been the combination of seeing where I have been, and thinking of where I'd want to be, and seeing the characters struggle with their own emotional troubles that sent me off into boohooville. But it also did the most amazing, unexpected thing.
It gave me the will to fight. For the last eight years or so, I have fought with my own body, and occasionally it gets a pretty good shot in and knocks me down. I guess I was starting to give up. I'm tired of being sick and I'm tired of hurting...and there is just too damn much on this planet that I totally don't understand (but that's a whole other blog series).
But between the movie and the cheesy 80's soundtrack (toldja I'm a dork), I really started thinking. I don't want to die yet. I'm not giving up. There is too much that I still want to do and see. I wanna see my daughter again. I want to beat this and live long enough to see my grandkids. I want to go see England, Ireland, and go see Hawaii again. I want to go to Renn Fests. I want to live dammit.
So, I'm fighting. I want off all these crazy meds and I want my life back. I've had enough. I discovered I can get down a pb & j sandwich and milk and have both last night and today. I'm working to get off meds and get food into me so I can be strong enough to fight again.
That silly 80's movie gave me just the oomph I needed to start working my way back on track. I'm a dork. Oh well.
I'm sure you've seen it (and if you haven't I do recommend it, just not under the above circumstances) and it's set in Washington D.C., which is about an hour or so from where I live now. I've been all over the District so I recognized most of the places in the movie. But it must have been the combination of seeing where I have been, and thinking of where I'd want to be, and seeing the characters struggle with their own emotional troubles that sent me off into boohooville. But it also did the most amazing, unexpected thing.
It gave me the will to fight. For the last eight years or so, I have fought with my own body, and occasionally it gets a pretty good shot in and knocks me down. I guess I was starting to give up. I'm tired of being sick and I'm tired of hurting...and there is just too damn much on this planet that I totally don't understand (but that's a whole other blog series).
But between the movie and the cheesy 80's soundtrack (toldja I'm a dork), I really started thinking. I don't want to die yet. I'm not giving up. There is too much that I still want to do and see. I wanna see my daughter again. I want to beat this and live long enough to see my grandkids. I want to go see England, Ireland, and go see Hawaii again. I want to go to Renn Fests. I want to live dammit.
So, I'm fighting. I want off all these crazy meds and I want my life back. I've had enough. I discovered I can get down a pb & j sandwich and milk and have both last night and today. I'm working to get off meds and get food into me so I can be strong enough to fight again.
That silly 80's movie gave me just the oomph I needed to start working my way back on track. I'm a dork. Oh well.
The Perfect Storm?
Ugh, I am so not keeping up with my writing like I should and like I originally intended to for you, my darling readers. But I sorta have a good excuse -ish for now. At least I keep fooling myself into thinking that maybe I do.
Basically it just boils down to I have been really, really sick lately (as in I haven't had solid food in roughly three days), I just moved 800 miles, my baby just turned 18 (which is fuh-reaking me out), and I am pretty overwhelmed right now....and I hate to whine.
I wasn't in bad shape when I left Florida. I wasn't great but after the epidural shots I wasn't doing too bad. But somehow about a week after I got to Maryland I started going down hill. Unpacking? Pushing myself? I'm not sure, but I started not doing as well. Pain and fatigue went up...and the fight with the doctors started. I finally hit a wall last Friday (August 27) and ended up in the e.r. for a migraine. I hate those days...waking up in pain, trying to beat it back down for six hours or so, then finally crying 'uncle' and going in for a three to four hour ordeal in the e.r.. Knowing they're gonna stick me and I'm probably going to have to fight for a high enough dose of meds to beat the monster down. It always seems to follow the same path.
I did at last find victory over the gawd awful migraine beast, but this one has taken a lot out of me, and my poor body is slowly recovering. I asked the d.h. to make me pancakes later. Finally something I think I can get down.
I wanted to move to Maryland. It's pretty here and it's a good place for the hubs to retire, but I always seem to miss somewhere no matter where I am. Guess that's the price to pay for the gypsy life I have lead? I'm actually plotting and scheming a trip to go home (aka Meeechigan) for a couple of days this month. I think it would do me a lot of good...oh, and Renn Fest is until October 3rd!
Last, but certainly not at all least, my baby girl turned 18 last Wednesday and I was fine until it suddenly hit me that evening that she was going out to her first club this last Friday night...just like I did. My 18th birthday also happened to fall on a Wednesday and I went to my first club that Friday (where I met my first husband....but that's another story) and I just.....fell apart.
She already moved out almost a year ago, but now she's 6,000 miles away and friggin grew up on me, and all of a sudden my house feels so much smaller. My babies are growing up and going out into the world. Sigh. I'm so proud, but at the same time, I would do anything to gather my little chicklings up and keep them close to me and safe forever.
So, as the title implies, I think I just hit the perfect storm of emotional and physical exhaustion and fell apart for a couple of days. I'll go home for a couple of days in a couple of weeks and I know that will feed my soul.
Be well, my spoonies!
Basically it just boils down to I have been really, really sick lately (as in I haven't had solid food in roughly three days), I just moved 800 miles, my baby just turned 18 (which is fuh-reaking me out), and I am pretty overwhelmed right now....and I hate to whine.
I wasn't in bad shape when I left Florida. I wasn't great but after the epidural shots I wasn't doing too bad. But somehow about a week after I got to Maryland I started going down hill. Unpacking? Pushing myself? I'm not sure, but I started not doing as well. Pain and fatigue went up...and the fight with the doctors started. I finally hit a wall last Friday (August 27) and ended up in the e.r. for a migraine. I hate those days...waking up in pain, trying to beat it back down for six hours or so, then finally crying 'uncle' and going in for a three to four hour ordeal in the e.r.. Knowing they're gonna stick me and I'm probably going to have to fight for a high enough dose of meds to beat the monster down. It always seems to follow the same path.
I did at last find victory over the gawd awful migraine beast, but this one has taken a lot out of me, and my poor body is slowly recovering. I asked the d.h. to make me pancakes later. Finally something I think I can get down.
I wanted to move to Maryland. It's pretty here and it's a good place for the hubs to retire, but I always seem to miss somewhere no matter where I am. Guess that's the price to pay for the gypsy life I have lead? I'm actually plotting and scheming a trip to go home (aka Meeechigan) for a couple of days this month. I think it would do me a lot of good...oh, and Renn Fest is until October 3rd!
Last, but certainly not at all least, my baby girl turned 18 last Wednesday and I was fine until it suddenly hit me that evening that she was going out to her first club this last Friday night...just like I did. My 18th birthday also happened to fall on a Wednesday and I went to my first club that Friday (where I met my first husband....but that's another story) and I just.....fell apart.
She already moved out almost a year ago, but now she's 6,000 miles away and friggin grew up on me, and all of a sudden my house feels so much smaller. My babies are growing up and going out into the world. Sigh. I'm so proud, but at the same time, I would do anything to gather my little chicklings up and keep them close to me and safe forever.
So, as the title implies, I think I just hit the perfect storm of emotional and physical exhaustion and fell apart for a couple of days. I'll go home for a couple of days in a couple of weeks and I know that will feed my soul.
Be well, my spoonies!
Teetering
When I started this blog, it was with the intent of posting at least five times a week. I wanted to share life with a chronic condition on a daily basis. If you're wondering where Xunnie has been because I haven't posted in about a week now, well....
Writers exist on a fine line, I think. I write through heartbreak and turmoil. I write through joy. Tapping out my agony into my writings eases a lot of pain, most of the time, for me. But then there are times when I have teetered into too much agony to write through. And that's where Xunnie has been for the last week.
I have been overwhelmed emotionally, physically, and even spiritually in the last few weeks.
Whatever is wrong with me has progressed again. It's more than a flare. Oxygen issues are abundant again, pain has spiked, and I am nauseated almost all the time. I'm waiting on referrals to pain specialists and neurologists again, and hoping like hell they will be kind to me and that maybe....just maybe, some sort of test can be definitive this time.
I have been hurt by some of the people I love most. Some by them walking away from me. Some by their harsh words. Some have hurt me just through thoughtlessness. I wanted very much to have "my girls". Those close we-can-get-thru-anything relationships that last forever, but I just don't seem to get lucky enough to find friends like that. Don't get me wrong, I'm grateful for the friends that I do have.
My relationship with my mother is fragile still, but progressing, and I am very grateful for that. My relationship with my oldest daughter took a hit. I think just because she's at a difficult stage in her life, but I think we'll be okay and I just have to be here and wait for her. That's progressing too, but just fragile right now as well.
Finally, my d.h. has been struggling with his own things and that has been especially hard on me. After 12 years, you learn that sometimes there are bumpy patches and sometimes those bumpy patches last a little while. Not everything is as simple as an afternoon argument. But you wait, and you hope, and you try. Even if sometimes it hurts and it costs you.
When everything else seems to be going wrong, I find myself wishing occasionally that I could still believe in God. I was once a Christian..... baptized and very active in the church and I remember it brought me a lot of comfort sometimes, but through a series of events that coincided with a crisis of faith, I walked away. I now believe very much in the Buddhist philosophies but there is no "Father" in those, and when I am lonely and hurting, I sometimes wish there were.
I realize there is really no humor in this post, and it's a little different from most of my writing. But if you wondered where Xunnie has been......well, she's struggling right now and searching for hope. Maybe it's in one of the boxes that hasn't been unpacked in the garage. I'll have to go look....
Writers exist on a fine line, I think. I write through heartbreak and turmoil. I write through joy. Tapping out my agony into my writings eases a lot of pain, most of the time, for me. But then there are times when I have teetered into too much agony to write through. And that's where Xunnie has been for the last week.
I have been overwhelmed emotionally, physically, and even spiritually in the last few weeks.
Whatever is wrong with me has progressed again. It's more than a flare. Oxygen issues are abundant again, pain has spiked, and I am nauseated almost all the time. I'm waiting on referrals to pain specialists and neurologists again, and hoping like hell they will be kind to me and that maybe....just maybe, some sort of test can be definitive this time.
I have been hurt by some of the people I love most. Some by them walking away from me. Some by their harsh words. Some have hurt me just through thoughtlessness. I wanted very much to have "my girls". Those close we-can-get-thru-anything relationships that last forever, but I just don't seem to get lucky enough to find friends like that. Don't get me wrong, I'm grateful for the friends that I do have.
My relationship with my mother is fragile still, but progressing, and I am very grateful for that. My relationship with my oldest daughter took a hit. I think just because she's at a difficult stage in her life, but I think we'll be okay and I just have to be here and wait for her. That's progressing too, but just fragile right now as well.
Finally, my d.h. has been struggling with his own things and that has been especially hard on me. After 12 years, you learn that sometimes there are bumpy patches and sometimes those bumpy patches last a little while. Not everything is as simple as an afternoon argument. But you wait, and you hope, and you try. Even if sometimes it hurts and it costs you.
When everything else seems to be going wrong, I find myself wishing occasionally that I could still believe in God. I was once a Christian..... baptized and very active in the church and I remember it brought me a lot of comfort sometimes, but through a series of events that coincided with a crisis of faith, I walked away. I now believe very much in the Buddhist philosophies but there is no "Father" in those, and when I am lonely and hurting, I sometimes wish there were.
I realize there is really no humor in this post, and it's a little different from most of my writing. But if you wondered where Xunnie has been......well, she's struggling right now and searching for hope. Maybe it's in one of the boxes that hasn't been unpacked in the garage. I'll have to go look....
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